The NIH Response to the Petition/Package

Since not everyone receives emails from change.org, which is how the updates regarding the petition are delivered, and it’s the beginning of the year, I wanted to make the NIH response available here so everyone had a chance to see it. Get everyone up to date and on the same page. I can’t thank all of you enough for helping make this happen. I’ll post my and some advocates responses to the letter in the next post. So stay tuned.

The response from the NIH was interesting for a few reasons. Just for clarity’s sake, I’ll say it was not an official response–it was a personal letter emailed strictly to Matt. While they never mention the package and only briefly acknowledge the existence of the petition, I know that Collins receieved the whole kit and kaboodle. How? Because a receipt was sent to my email that the package was delivered and signed for by none other than the big MAN himself! Santa Clause! Or Santa Collins…you know what I mean.

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So, now we don’t have to wonder. Anyway, I’ll begin by posting the letter Matt wrote (rubber-banded to mine) that we included inside the box. Following it is the response from the NIH.

Matt’s Letter:

Dear Mr. Collins,

My name is Matt Tyler. Until just a few years ago, I had never heard of anything called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. And that’s kind of what’s so crazy about the disease. It’s hidden from the majority of us. It wasn’t until I ran into an acquaintance from my younger years, someone who had sort of disappeared from my circle of friends when I was in my mid-twenties. I just assumed she had relocated, had become consumed with beginning a family or a career. You know, normal late-twenties life stuff. Turns out she was dealing with ME/CFS. She had faded into the background not because she had other things in the background to do, but because she was forced to recoil into a bed by a mysterious disease that most of us had never heard of.

I’ve grown very close to her recently and in turn have grown very close to the life that suffering from Myalgic Encephalomyelitis brings with it.  She’s not even on the most severe end of the spectrum, but it still baffles me how she’s able to get up every day (most days, some days just have to involve being in bed all day) and deal with the pain and exhaustion that she feels just because she’s awake. Because she made a sandwich and then walked to the couch.  Because she needed to bathe. And she never complains or whines about her circumstance. She has every right to, but instead she fights however she can. She does things like create the included petition. She exerts the very limited supply of energy she has to give a voice and some hope to the millions of people suffering with this debilitating disease. The millions of people who have been robbed of years of their lives.

You once lived a life where you searched for hidden genes responsible for these types of things. I remember reading once that you would put a sticker on your motorcycle helmet every time you discovered a gene responsible for a disease. I’m sure it was a proud moment applying the sticker representing Cystic Fibrosis. I know that’s not the life you live anymore. Now you get to direct and inspire young versions of yourself. Young scientists trying to make a change in the world. That’s why we need your help. Your influence. Your voice.

The reason for this petition is simple: Allocate more funds toward the research of Myalgic Encephalomyelitis. That’s what we are asking. That’s what the people behind the more than 50,000 signatures are requesting. But I’m sure you understand more so than most of us that by doing that, you are immediately impacting all those millions of people who have been pushed into shadows. If this increased funding happens, not only will the impact happen long term with better diagnostic tools and possible treatments, but you’ll give the people suffering an injection of hope. Hope that they can return to their jobs. Hope that the life they once had and enjoyed is not forever lost. Someone with as much prominence in the scientific world as you making a decision to increase research funding and speaking out about ME/CFS spreads the word about the disease. It might inspire some grad student somewhere to decide this is going to be something they want to attempt to tackle. Some blossoming scientist might decide they want to put a dent in or even end this terrible disease.

I understand that giving more funds to ME/CFS research likely means another diseases’ funding might be reduced. I don’t envy you having to make those decisions. But I can say this. I would imagine in the world where your career exists, the phrase “return on investment” is not foreign. I run a small family business and it’s something I have to consider almost daily. I’m sure it’s a much more difficult metric to calculate in the domain where you must apply it. But I’ll leave you with this: any additional money put towards ME/CFS research, especially if some sort of formal announcement or press release is attached, will yield an exponentially higher return on investment than most other diseases. Because outside of simply robbing people of their careers, health and happiness, ME/CFS robs people of hope. And a life without hope is no life at all.

You have the chance to not only bring about scientific change to help millions of people in need, but the chance to reinvigorate them with hope.

Thank you for your time,

Matt Tyler

P.S.  If you do decide to do what is being asked for in the petition, I will design, make and hand deliver a sticker representing ME/CFS for your motorcycle helmet in hopes that in the very near future you’ll be able to apply it.

***The NIH Response***

Dear Mr. Tyler:

Tell your friend Mary and the supporters of this petition and the me/cfs community to go find the fattest worms they can find, take a seat on a nearby stomp, and eat them at a slow, slow, pace. OK? Thank you and we’ll check back in with you in roughly 10 years from now, mkay? Happy Holidays gbyyyyyyyye!

KIDDING. I had to. OK, Here is their actual response.

Dear Mr. Tyler:

Thank you for your letter to National Institutes of Health (NIH) Director Dr. Francis S. Collins concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  We appreciate your kind words about his work.  Dr. Collins requested that I respond to you on his behalf.

I am sorry to learn that a friend of yours has ME/CFS.  Your description of her experiences underscores the devastating effects of this disease.  With your letter, you included a petition that asked the NIH to increase funding for ME/CFS research to $100 million.

We at the NIH understand the necessity of improving diagnostics and finding effective therapies for ME/CFS as quickly as possible.  We agree that there is a tremendous need for quality research in ME/CFS.  It may be helpful for you to know that the NIH system is open for any researchers to submit their best ideas for funding excellent science in ME/CFS.  The NIH grant system primarily funds work performed in individual laboratories or clinics by teams of scientists working at academic, medical, and other biomedical research institutions, including industry.  Individual investigators interested in pursuing ME/CFS research can submit detailed proposals through their institutions to answer a broad range of research questions.  Proposals can be submitted three times per year.  Proposed projects undergo a rigorous peer review process at the NIH and are then considered for funding.  Investigators receive critiques of their proposals and have the option to revise them and resubmit.

The Trans-NIH ME/CFS Working Group recognizes the acute need to cultivate more research and investigators to work on ME/CFS.  In pursuit of this goal, NIH plans to bring scientists together with patients and ME/CFS advocacy groups in April 2019 to discuss the opportunities in ME/CFS research.  We also plan a meeting intended to engage early-stage career scientists in ME/CFS.  More information about these meetings is available at https://www.nih.gov/mecfs/events

In addition, the NIH is conducting a study on ME/CFS at the NIH Clinical Center in Bethesda, Maryland.  This study, led by renowned neuroimmunologist Dr. Avindra Nath, is exploring the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.  Recruitment of healthy volunteers and people with ME/CFS is underway.  The study is currently recruiting patients who have had ME/CFS for 5 years or fewer.  You can read about the study at this website:  https://mecfs.ctss.nih.gov/index.html  The following site provides a contact email address and the telephone number for the NIH’s Office of Patient Recruitment:  https://mecfs.ctss.nih.gov/contact.html

Please be aware that the NIH generally does not stipulate the amount of funds for specific diseases.  There have been times when Congress provided funds to the NIH for specific purposes, but those instances have been rare—HIV, cancer, Alzheimer’s disease, and more recently, the crisis resulting from opioid overuse disorder.  In special cases there are NIH-driven exceptions, for example, when one or more NIH Institutes set aside funds by issuing a Request for Applications (RFA).  The RFAs for the ME/CFS Collaborative Research Centers (CRCs) and Data Management and Coordinating Center (DMCC) are examples.

As a result of the RFAs, in September 2017, the NIH awarded four grants to support the creation of a ME/CFS research consortium composed of three CRCs and a DMCC.  These centers will help to build a strong foundation for expanding research on ME/CFS.  The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS.  The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.  You can read about the awards at https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research  We hope that the new centers and other NIH efforts will attract researchers from other areas to propose research on ME/CFS and increase the number of young investigators entering the field.

The awards are just one result of the NIH’s efforts to advance research on ME/CFS with the goals of identifying its cause and finding biomarkers to study disease progression and monitor response to treatment.  You can read about these plans in the following NIH news article from October 2015:  https://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome  As part of these actions, the NIH has renewed the focus and efforts of the Trans-NIH ME/CFS Working Group, which is carefully exploring the gaps in our knowledge and identifying the opportunities for research on ME/CFS.  The Working Group will continue to discuss next steps to attract more researchers to this field and expand research on this disease.  You may wish to visit the Trans-NIH ME/CFS Working Group website at www.nih.gov/mecfs

The NIH continues to post research funding opportunities related to ME/CFS in the “Funding” section of that site.  In addition, the information at the “Resources” section of the site may be helpful.  If you would like to receive periodic updates about NIH activities related to ME/CFS via email, please go to that website and click on the link to “Join our listserv” at the bottom of the left sidebar.  The NIH hosts regular telebriefings with the ME/CFS community to provide updates on our activities and answer questions.  Announcements about upcoming telebriefings are emailed via the listserv.

In addition, the National Institute of Neurological Disorders and Stroke, which is the lead Institute for the Trans-NIH ME/CFS Working Group along with the National Institute of Allergy and Infectious Diseases, has recently formed a working group of its advisory council to provide scientific guidance on how best to advance ME/CFS research at NIH.  The working group includes basic scientists, clinicians, Federal partners, advocates, and people with ME/CFS.

We hope that the steps the NIH has taken over the past 2 years and the future progress of the Centers will grow into a major scientific effort in ME/CFS research funded by grants submitted to NIH.  We look forward to working with the community to gain further insights into ME/CFS that will lead to the development of effective treatments and improve the quality of life for people coping with this disease.

Sincerely,

Walter J. Koroshetz, M.D.

Chair, Trans-NIH ME/CFS Research Working Group

*****

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“This is great! We got a response from the NIH!”                                                                        “Yeah, this is a big deal!”                                                                                                                                 “This is bullshit.”

Don’t worry, this may not be exactly what I/We might’ve hoped for, but this provides us good information straight from the horses mouth. There is a great deal of value in seeing how the NIH looks at this issue and what they consider “enough” in terms of how they’re approaching the situation around MECFS. Since some of their advice involved going to congress, this letter can help convey the exact issues we’re talking about when we say there’s a lack of urgency and an overall tone-deaf, dismissiveness when it comes to this disease. Either way, I’m very happy and grateful we received this response, and trust me when I say it will be put to good use. Stay tuned.

Health, Happiness, More to Come!

The Day After…

I am laying on my couch with an ice pack on my head, going through a mental checklist of things I need to do. I need to take a bath. I need to do the dishes. I need to finish my proposal. I need to re-ignite the petition. I need to eat. I’m shaky and my heart keeps beating fast and I don’t have an appetite. It’s interesting how hard it is to eat when you don’t have an appetite–just in the sense that like, you need food to survive and to maintain health and that sort of thing. I need something substantial like a sandwich, but that would involve going to the grocery store and hah.. hah..that’s funny, nope. Not happening today unfortunately. Oh look, a stray almond! I’ll eat that.

This day, my head, my house–all of it feels extremely dense to even process and insurmountable in the department of all the work I’m behind on. All the things I said I’d pick back up or start or finish. They’re just sitting there waiting for me, and I’m laying on the couch waiting for my brain to calm down. I probably need to sleep but I can’t, so I just picked up my phone and figured I might as well write these out of sequence, inconsequential thoughts down as I definitely do not do the things I need to do on my to-do list.

It’s a rough day physically but that was to be expected. We returned home from a trip to Salt Lake for my cousins wedding. I knew that I’d probably overdo it on the trip, but I so rarely get to see my family, sometimes you just have to live a little. But that almost always means you’ll have to pay a lot, with money you don’t have. (Sometimes you get lucky) Don’t ask me how this metaphor ends because I really don’t know. Traveling home yesterday was another clusterf*ck of overwhelming noise and sounds and airport personnel yelling things and security guards barking orders and that strangely depressing wait in line without your shoes or belt–so vulnerable! Laptop out of the bag? Fine, fine, whatever you want. There is also the very particular physical discomfort of flying– that pressure in your head, particularly taking off and landing, the loudness of the motor and that background, high-pitched white noise that makes everyone’s voice sound like it’s coming from a crappy radio. It felt like my brain was swelling, and hey, maybe it was.

By the time we reached our gate for the first leg of the flight I was so cognitively overloaded I was holding back tears. Cry baby! I actually wasn’t sad, I mean I may have been sad to look at, but it seems now when I get cognitive overload that’s what happens. Tears. So.. that’s cool. Then we stopped in Las Vegas– now THAT is a soothing, nice quiet airport where you can really decompress. OK but seriously they should warn you when you get off the plane that all of your senses are about to ignite and possibly implode from the inside and so here are some free ear plugs and a helmet so you don’t die from… I don’t know, too many sounds? I can hear the coroner now say it in a British accent: “Twas death from too many sounds.” It felt like a few tiny deaths. We had time to eat in that airport and even the wallpaper in the food court was overwhelming to look at. It dizzied me. It had diamonds, clubs, spades and hearts, which is very appropro for the destination, but it all just felt like.. a lot. By the time we came home I wasn’t even tired– I was somehow a little wired but enjoyed some silence for a while before more Parks and Rec on Netflix because that show feels like home. OK, this is getting boring.

The good news was how well I felt for at least 3 days of the trip–and they were the important days, too. Of course, I take enough pills to knock out a linebacker, so that always helps keep me somewhat functional. But in general I’ve improved functionally since August, which was a hot disaster with a lot of time being useless in bed. About a month ago, I began taking an anti-viral (Valtrex) for HHV6, Cytelomegalovirus, and possibly a virus that hides in the dorsal root ganglion and can cause a lot of head and face pain. (I’ve basically had a headache for seven years and it spread to my face roughly three years ago. Woo Woo!) So far the pain isn’t noticeably different but I’m moving with more ease, and in general, the right direction. Maybe it was the mountain air. It actually snowed while we were there. It was a nice, balmy 93 here today.

Maybe it was seeing a whole side of my family that I never get to see. And as much as I wish we saw each other more often, it really does make each visit we have together feel pretty special and end up epic in some funny, legacy-leaving way. Like that Christmas when my mom got mad at us for having a bonfire and said we were being reckless and stupid and someone was going to catch their clothes on fire. We laughed her off when she went inside, and then ten minutes later my brother-in-laws pants totally caught on fire. Pretty stupid to be waving lit palm tree branches around as they rained down fiery leaves, but, also hilarious.

My sister arranged for roughly 20 of us to stay in this ginormous house that I am convinced was used for a family of Sister Wives. There were just far too many weirdly placed exit doors with locks. Three too many kitchens. And living rooms. Too many odd rooms where it didn’t all make conventional sense. Hard to explain. Wait should I be a sister-wife? Then I would have help with my wifely duties! Need to think on that…

Anyway, all the love and laughter and piano playing actually energized me and I did better than expected. Major bonus: there was a piano in the house. Second major bonus: my brother Doug, professional jazz pianist and teacher, at your service. Add them together and you’ve got yourself a strange rendition of the song “What If God Was One of Us?” because apparently my brother Nick has really weird taste in music. Doug serenaded us intermittently with some improvisational  jazz, and like always, took requests. So of course, when everyone stumbled inside the house after the wedding, feeling nice and toasty from the matrimonial alcohol, it was only right that we all belted out “Piano Man” at probably an obnoxious volume, with some periodic hugs and a few sloppy cheersing of glasses. We toasted to the dead people and then played all the games they had downstairs, including ping pong, which I think I might actually be decent at. I’m not certain, I may have just played people who were really bad at ping pong. I do curse a lot when I play for some reason. Tisk tisk.

It felt good to be surrounded by people again, and experience the love and noise and general “togetherness”,  whatever that means. I just know it’s rare and fast and doesn’t happen very often, so I soaked it all up before returning to real-life, which is much quieter, and less cool. Waking up Monday was the first day my body said “OK no more though. Like really, I’m out.” And that was OK because there was nothing left on the agenda but to fly home which, was in fact the toughest part of the trip. (“First world problems” I know I know.) So now in the aftermath I lay like a pile of laundry, running through the things I need to do but will still most likely not get done. Dishes. No, eat first. But, no appetite. No real food. What a train wreck: get it together!

There is so much more to say but this is starting to feel like a bore and I still need to eat. How many times have I said that? Anyway, the search continues–how to be sick and alive in the loud, fast world– also how to let things go that you’re unable to do the moment you want to do them, without like, giving up on life. It’s only the day after, I guess the dishes can wait. They aren’t going anywhere.

Here’s a gem of a photo that my cousin Brittany took of at least most of us. It feels like an oddly accurate representation of us all. If anyone in the family doesn’t want to be on the blog…sorry…but you are. I was going to say I’d fix it, but we all know I wouldn’t fix it. I still haven’t eaten! I must eat. Can you spot me? I’m the idiot.

Health, Happiness, Recovery

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Duck Sauce

Congrats Ryan and Wendy! We love ya.

Great Expectations…OK Zero Expectations

Something funny happens when you become chronically ill. Ready? You become totally shitty at fulfilling the roles that probably came easy and natural to you before The Grand Interruption. Parent, kid, sibling, husband, wife, friend–all of those roles are going to suffer, because you’re simply unable to do the things you could before. Your capabilities become limited, your time becomes precious and cornered, and your ability to meet your and other peoples expectations will fall short, again and again. I admit it fully, I’m in general an unreliable source of help, or maybe just unreliable period. And if you don’t think that stabs me straight in the ego, then try saying out loud “I’m a human wasteland” and see how it feels. Because that’s about how it feels.

But we have to be fair, to ourselves and others. We can’t hold ourselves to the same standards as before, especially when we don’t have the same working parts. And we have to remember that the adjustments we make are not adaptations that we alone have to get used to. All those people for whom we provided some kind of role, they’re going to be affected too. They’re going to get exhausted, be disappointed, feel the pain of you not being who you used to be, just as you, the sick person will. I don’t know what it’s like to be a friend or a family member of Mary Gelpi, but I know that I begin 90% of my texts, emails, and conversations with an apology–because I couldn’t make it, I’m responding so late, I won’t be able to attend (insert anything important) I’m sure they become as tired of hearing it as I become of saying it. It’s exhaustive, saying sorry all the time. It’s probably tiresome to be on the other end of it too. But you are sorry, you don’t want to be this crappy of a friend or sister or girlfriend–and while being sick is nobody’s fault, it is the reality and it’s going to be painful. Learning to redefine our roles must be a lifelong process, I’m not sure. I just know I’m still learning.

Maybe a part of being proactive in that transition is becoming more honest and realistic with myself about what I’m able to do. I don’t deny that I suffer from wishful thinking, and probably make commitments I shouldn’t. Letting people know that I can’t be counted on, which is still hard to say, would probably let fewer people down less often. They have to know what to expect, which is unfortunately very little, but it’s up to us to fill them in.  Sometimes you get so busy being sick, you forget to communicate. You forget that people don’t know, or remember. Or you give up on telling them because it can feel repetitive and pointless, but I don’t think that’s true in reality. If I’m not honest about what I can do, out of fear or pride or whatever it is, I will let people down because they won’t know where the line is

I’ve had to face the reality in the last few years that there is no such thing as “solid plans” for me, or relying on myself 100% to be able to follow through with them. Every plan basically has an invisible “tentatively” written behind it. Last month I rescheduled 3 doctors appointments because I was too sick to make it. I have no idea how I’ll feel one day to the next, and that takes constant adjustment. I remember my whole family coming to visit last summer, they were sitting around my living room trying to figure out who could babysit the kids while they went to the French Quarter for the day. I remember sitting in the room saying Guys, I’m right here, I’ll watch them. I was actually, momentarily, offended that they didn’t consider me. Then someone said Mary, you can’t even do your dishes right now. Oh yeah, whoops. I forgot my own unreliability! As Louis C. K. would put it, I’m a non-contributing zero. Hah, yes. That sounds right. I had to laugh that even I couldn’t remember that I just can’t be counted on right now, and as much as that can be a kick in the gut to admit, it’s sort of silly to take it personally. If you’re sick, you’re sick–just admit it and keep moving.

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“Sweetie, can you do the dishes?” “No dad, I’m a non-contributing zero.” “Oh, right. Well, we love you anyway!” “Thanks guys.” “OK now get out of the way so we can do the dishes.”

 

I said in the beginning that being sick makes us crappy at fulfilling our roles, and in the traditional sense that may be true. But it also remains that when you’re sick, you just can’t do what you can’t do. If you don’t have legs, you can’t walk. It’s toxic to compare yourself to an old life where all your faculties were in place, to a new one where half your parts aren’t working. But being sick forces you to redefine your role, and I think there are ways to use your new way of “being” in the world and still be functioning in your respective roles. It’s not as is being sick effects your ability to love. If anything it’s made me love deeper, made me more grateful, and made the friendships that have lasted grow in certain ways. Still, I fail a lot, and many times it’s because I’m a flawed human being, not a chronically sick person. So I try to be extra cautious of both. Like most things being sick teaches, awareness seems to be key.

I’m always asking the questions that I think everyone is asking; am I doing the right thing, am I good person, what am I meant to do with my life? My circumstances? We all have our different sets of assets and vices, and it’s a balancing act trying to find the middle part where your feet are solid on the ground. Becoming chronically sick picks up your lifeless body and throws it upside down and backwards so that when you land you hardly know which way “up” is. It’s a puzzle, a maze, finding your way, but not impossible. The guru’s are always asking “How are you going to use what’s been given to you?” I always looked at that question as asking how I’d use the gifts I was given–the positive things in my life. Now I realize the question is far deeper than that…I think more often they mean, What will you do with your pain? How will you use this Extreme Disturbance to do better? Well hell, I don’t know. I just know that all we can do is try. Many times that means living with the mystery and not the answer. Also not easy to do.

I think it’s possible to use the condition of being sick in positive ways and to also maintain your roles by newly defining them. It seems to require incredible creativity and ingenuity, and I’ve certainly suffered from a lack of those many times. But I know there are ways to transform your old ways into new ones that are equally rewarding but not costly or impossible. I wouldn’t have confronted these conundrums if I hadn’t become sick and lost control of all the things I used to think of as mine. It has at least opened me up to the possibility of higher consciousness, and compared to who I was, I know the Mary without control has a better grasp on reality, is more compassionate, a better listener, less proud and more forgiving. I hope that doesn’t sound like bragging, I just think it’s good to examine the gifts that our so-called shitty circumstances can uncover. I obviously have a long way to go, but I know being sick has opened up deeper channels for me, and transformed the way I see the world and being in it.  Maybe it’s selfish, but I learned forgiveness by having to forgive myself first–for being where I was, for the things I could not do, for always thinking I should be doing better or further along. I had to let the unrealistic expectations go, and forgive myself for not reaching them.

I remember in my first serious relationship, which wasn’t until college, he frequently complained that I never apologized. My response was always “But that’s because I’m not the one who did anything wrong.” Holy cow, I’m the worst! It took years of learning humility and grace that being and saying sorry is a virtuous thing. It means recognizing your wrongdoing and at least becoming temporarily conscious of things you can do better. When you have a fight with someone, sometimes it’s because one person flat-out messed up. But many times, it takes two to tango, and talking things out, forgiving, letting go…all of it is stuff that moves both people forward. I don’t say this pretending as though I’ve mastered the art–I only know it’s there, it’s a choice. And it’s a good thing to know. I don’t know what or who I’d be like, were I still in my structured world, independent, living my life. But I know I enjoy the view from where I am now much more. I almost don’t look at life as mine anymore–I’m not sure whose it is. I’m still the driver, but it’s definitely a borrowed car.

Anyway, I guess this is your healthy reminder to keep those expectations low! And be grateful for the people who love you despite your human-wastelandednesss. They obviously see that you’re still cool despite being sick. And when people ask you to do something you’re incapable of, remind them with a smile: “I’m a non-contributing zero!” Then find new ways to contribute. :)

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“Son, you’re a non-contributing zero, and that’s OK.”     “…Thanks Dad.”

Health, Happiness, New Expectations

 

Apathy, Advocacy, Jumping In

I remember a conversation I had with my mom, roughly six years ago. It was not long after the Great Crash of 2011. I was slumped at a bar stool in my parents kitchen. I’d been crashed a while and not doing very well, physically or mentally. It was a grey, wet Winter, perfectly depressing, and I remember looking out our office window and thinking “I feel exactly like the weather.” I’d been caged up too long, among other side effects. Everything was a reminder of what I’d lost, what I believed the disease took. I knew I should be grateful I had somewhere to go, and I had people to take care of me at all. Not everyone has that, no doubt I was lucky. But I didn’t want help. That kind of surrender is never really easy, but when you’re in need, it’s really the only way to go. Resistance just ends up making you mean to the people who are trying to help you.

My mom was folding laundry, explaining to me the details of a promising new study going on, something involving the gut; I wouldn’t know because I was barely listening. She told me that I should follow the research and recommended I read a blog called Phoenix Rising, a veritable A-Z of everything MECFS. It might help me feel better if I at least understood more about the disease, on many levels.

But I could almost feel a visceral resistance to this idea. Ironically, I didn’t like reading books or blogs or stories about this disease. They only reinforced what I already knew, and they all ended the same—no one got better. I can remember holding back tears, angry tears I guess, that I didn’t want to read anything about this disease again unless it was an article touting that they found a cure.

They?

(Insert really awkward DC photo)

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So terrible.
6 years later, I found myself frozen in the doorway of room 129 in the Rayburn Building in Washington D.C. I was attending an event called “The Storm on Washington“–an event I felt a strong pull toward for a few months.

This room would be our “MECFS Command Center” throughout the long day–a place to commune in between meetings and rest, eat, talk, or collapse. (Really, there were beds) I hadn’t even entered and already I could feel the warmth of the room from so many bodies insides, at least 10 degrees hotter than the icy hallway. It was 9 am and a low, indecipherable murmur pervaded the room from multiple conversations–introductions and instructions and attempts to achieve order among a really huge, logistical effort. I stood there like a lost puppy, watching the quiet chaos unfold. I knew not one person. What the hell am I doing here?

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Meeting the MAN, Dr. Nahle
I was doing what I’d done many times before–jumping in without a clue. But I was among smart and determined people. The principal reason for being there was pretty easy anyway–to share my story, to try and humanize this disease and convey the experience with decision-makers. I’d told my story plenty of times before, I’d become pretty practiced.  That day 52 advocates would meet with over 70 congressional offices and representatives. A success in just making that happen, in my book.  (Thank you MEAction and SolveMECFS!)

It feels like there have been many beginnings to my entrance into the advocacy world. A place I never thought I’d enter, for reasons I’m still unsure of now. Bitterness maybe. Fear probably. I still feel like I’m hardly making a dent, but I am trying, finally. Bitterness, self-pity, doubt–all of those feelings depleted me, when I was already emptied of energy. They still come around. But finding small glimmers of faith that you might be where you’re supposed to be, even if the circumstances are crap, feel energizing. Any time I’ve come across hope, it’s like a flashlight turning on in a cave. It’s somehow always led me out, even if very slowly. But it usually means some kind of surrender; giving it a chance. I don’t write this as though finding purpose in a painful situation is easy. It’s not. Particularly chronic illness, which is long-term. It took a long time to figure out that I could still even have one, as I was. I still lose my way from time to time, and wait for a flashlight to flick on that I can follow.

I didn’t know when I published the petition last year that I was entering the world of they. Nor did I really know what I was doing then either, surprise surprise. I was following intuition and telling the truth, that’s it. But the same energy that brought me to DC encouraged me to write it. Call it the universe, or God, the collective unconscious, or soul–something outside the 5 senses was helping me out. I just sort of followed the scent.

Admittedly, I’m bad at campaigning. Gary Zukav says that when our soul and our intentions are lined up, the universe backs us in big ways. Maybe that’s what happened when it gained something like 20,000 signatures in a day. I was also lucky that my sister does know how to campaign, and my enormous family, circle of friends and other advocacy groups pitched in, all in huge ways, and now that petition has 42,000 signatures. When I wrote it I had my fingers crossed it would reach 1000.

Did 42,000 signatures fix the problem? No. But it did something else important. It connected me to so many people through the feedback page, where people can leave comments. People shared their personal stories, their loved ones stories, gratitude and words of encouragement. Total strangers said they’d pray for this effort. Every time I read one of those comments it made me want to work harder. It showed me how far-reaching and devastating this disease can be.

I thought had it bad? Talk about small potatoes. The petition did two things: 1. Showed me I could have it a lot worse, so easy on the self-pity, chief. 2. Stopped me from looking the other direction. Coincidentally, that’s exactly what we’re asking the government to stop doing now.

It was the petition that led me to connecting with an MECFS advocate online, who knew the D.C. Aide for Bill Cassidy, a Louisiana State Senator. I contacted him, which led me to a meeting with Cassidy’s number 2 guy and the Louisiana State Director, Brian McNabb. Meeting with McNabb for 2.5 hours, discussing everything MECFS was an incredible experience. Did it change anything? Maybe not. But it encouraged me big time. And in the end it scored me a meeting with Senator Cassidy. McNabb warned, it would be in between two events so it’d have to be quick, maybe 5 minutes. I said I’d take it.

So, I met Bill Cassidy in a parking lot on his walk to his car with a group of staffers surrounding us.

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Parking Lot Office
I had to talk fast as he was late to his next meeting and his assistant kept saying “Sir, you’re very late, we need to go.” I spat all the vital things out as fast as I could. Knowing I didn’t have long, I left him with a folder where I’d printed out 25 pages of peoples comments and stories that they’s shared on the petition page. Did he read them? I’ll never know. But he looked me in the eye, he shook my hand, and he told me out loud “I really care about this issue.” I told him thank you, I couldn’t express how much we needed people to care. He said he wanted to continue the conversation when he had more time. We were being herded like cattle to his waiting car. A cynic might say he probably says that to everyone, but it didn’t matter. Here was one more person who had now at least heard of this disease and the issues, and also had some decision making power. His assistant who had hurried us both while listening to our conversation, started to get in her car, but stopped, got out, and gave me a hug first. Good stuff.

Later, my uncle who is a mutual friend of Representative Steve Scalise, had seen my “Chronic Fatigue Syndrome Song” on the petition page–a mostly embarrassing but celebratory song I wrote after hitting 40,000 signatures. He thought it was pretty funny, and asked if I was interested in a sit down

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Obligatory Photo, Thanks Mr. Scalise
with Steve Scalise, a Louisiana Representative and the Majority Whip. Umm, yes. So not long ago, my Uncle Paul and political mentor, Rep Steve Scalise and I all sat down for a while to talk MECFS. He was another kind and engaged listener. He asked good questions and was generous with his time. I told him my story, I attempted to tell the story of MECFS among my hiccuping brain, and Paul helped me convey some things when my words turned to spaghetti mid-sentence.

Would this meeting solve it? No, but it was one more person who now at least knew of the disease. Someone with decision making power. Count it.

It was exactly one week after that meeting that Scalise and others were shot in a baseball field in the middle of the morning. What?! I am as clumsy with thoughts as I am words when it comes to events like that. It’s so hard to understand, it happens way too often, and I still feel far away from it somehow. As cliche as is, I’m praying and sending healthy thoughts his direction and the others injured that day. How this all plays out in history, we can’t know yet. Maybe someone is reading this in the year 2045, and it will all make sense.

Why am I writing this now? Because I need the reminder, which is very obvious but I want in words anyway, which is just to try. A reminder of how much happier I feel when I go for it, even when I don’t know what I’m doing. A reminder that writing 15 versions of this one stupid blog post over the course of a month is mostly a waste of time. Just jump in. It’s not always complicated. It will never be perfect, but it’s almost irresponsible not to try at this point, and to keep trying, over and over.

I continue to walk the thin line between fighting for a cause I whole-heartedly believe in, and surrendering to circumstance and the things I can’t control. I’m always learning , that a sick life can be a good life too–and I hope can still become a person I can say I’m proud of in the end. It’s easy to cross over too far one way or another, but if I stop trying, I’m a gonner. Sometimes I fail. There are many (funny) stories where I blow it. But it feels so much better to get out there and blow it, then to act like a bitter teenager on the sidelines, thinking pain was never a part of the deal. This is the reminder; try. You always feel better when you do, so do.

Health, Happiness, Tryin

Fuel to the Fire

It’s been so long since I’ve typed at a computer, I think my typing speed may have dropped to under 60 WPM. Dangit. I should probably quit writing everything by hand in notebooks, if I want the words to appear anywhere else but in a stack on my bookshelf, that is. Also my handwriting is pretty indecipherable so I guess it makes sense to stick to the computer. It’s just that writing by hand has always felt easier, more accessible and immediate. There’s something more rousing about putting actual pen to page. I hesitate less. My ‘thinking’ mind turns quieter, and the space that must open in order for the good writing to come through stays that way, without distraction. Especially when I’m scratching away with a really great pen. Right now it’s a black Pilot G-2 07. Sounds like a damned air o’plane, and I’d even describe it as a “smooth glider.”. So, I guess I’ll just be transcribing from page to machine for a while. I need an intern. Any takers? I will pay in doughnuts. Why is doughnuts spelled like that?

This last month has been filled with a few major milestones. Most of them aren’t mine, but in the absence of personal excitement, the achievements of those in my inner circle are close enough–plus it’s something to tell other people. Like someone will say Whats new Mary? And instead of saying Um, nothing. I say Not much, but my childhood best friend had a baby! See how that works?

My childhood best friend had a baby. For real! It’s still hard for me to wrap my head around it, not because she’s the first of my friends to start a family. But because we’ve just been friends for so long, since we were babies in fact. We still laugh at jokes from when we were five! Sometimes I feel so young around her–I guess the kid in me comes out. Now she has one! A beautiful, alert, amazing little daughter. It’s all very exciting. I’ve decided that I’d like her to call me “Ont Viv” (what Will called his aunt in the Fresh Prince of Bel-Aire) I find it fitting, and if she has half the sense of humor of her mom, she will appreciate the spirit of this name. Of course, just like a milestone birthday, this big thing happened, and yet it’s not that different. Kaitlin and I are still the laughing, weird, sister-friends we’ve always been, except now there is a tiny little girl sleeping in the corner while we talk. Funny how everything changes, but the middle stays the same. Welcome to the world Bernadette Jane! Love, Ont Viv.

My other best friend, Dr. Emils, got married a week later. I was a bridesmaid: score! A Southern girl and a guy from Amsterdam equaled a classic New Orleans wedding with a dash of Dutch. Nice. Two days of wedding festivities and a crawfish boil led up to the ceremony at sunset, on probably the best day of weather New Orleans has had all year. Everything was perfect and she made such a beaming, beautiful bride. It was a happy, lively experience to be a part of and filled with a lot of love. All topped off with a long second-line led by a classic Nola brass band singing all the greats, including When the Saints Go Marching In. Weddings are the best. No, New Orleans weddings are the best. If you ever get the chance, go! I’m really happy for my friend, mostly because I could tell how incredibly happy they were together.

I’m also the last single girl on the planet. Sweet.

Engaging in a two day wedding weekend is a rare chance for me to see old friends, to be around people my age, to have a reason to dress up–or get dressed at all, for that matter. It’s not often that I get to do things like this. Not often I get to be 32. My life consists of a lot of solitude, which I like, but it’s always nice to get a glimpse of life outside the farm. If anything I live more like a 90-year-old dog lady, so I try to soak up every moment of acting 32. It’s tricky too, because I know that participating in things like this are not without consequence. Acting my own age comes with a price tag, so every time I decide to do it, I’m making a silent agreement. No one really knows the gravity of decisions like this. Or what’s involved in just showing up, or how  I’ll pay for it all later. The choice is so much more encompassing than just deciding to attend a party. I swear I don’t write this out of some martyr, woe-is-me mentality. It just struck me as I was swiping through photos of the big day, which was a really fun day–that it makes perfect sense why so many people misunderstand the illness. They don’t know the weight and preparation and consequence of partaking in something normal, like being a bridesmaid in a wedding. How could they? All they see is this:

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I did.

They couldn’t know how much time and tedious planning went on beforehand, including scheduling when I would bathe, to ensure there’d be enough time for rest between that and the next event. They couldn’t feel the certain amount of pain you just have to bare through things like this. They don’t see the plethora of medicine necessary to endure standing and socializing and lasting through a night. And they’d probably never consider such things, like a bath, or socializing, as exertion in the first place–As something that counts against you in your fight to keep strain at an absolute minimum. And that is almost always the goal. It’s obnoxious even to me, as I write it now. The strange reality of living with this thing. The exhaustive necessities involved in even small things. You’re always calculating how much every little thing will cost you, always trying to save up if you’ve got somewhere to be. But what really struck me is that nobody sees what the pricetag actually looks like. That’s because the pricetag comes later. They don’t see the subsequent week or weeks of recovery that follows at home. Which can look a little like this…

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Poor Monty

When I thought about the outward appearance of illness, the timeline of how it plays out, what I show to people when I’m out and what goes on at home–I realized not only how easy it would be to get the wrong idea about the disease, but also how I might play a part in misrepresenting its reality.

For one thing, I want to emphasize that the reason I am able to even show up and participate in a wedding is because I’m currently at a functional-enough level to pull it off. There is a spectrum to the disease, there is waxing and waning, and there have certainly been times throughout the last 6 years when I wouldn’t have been able to stand at the alter. Even so, being “functional-enough” still means tedious logistical preparation, and a two-week long crash as a result. So, I’m still miles from where I once was, or should be. But many others are bound to their homes, many are bound to their beds, and we are all suffering with the same disease. I realize that people may see me when I’m in public and just not “buy” that I could be sick. And I see why this misperception persists.

But I also think that often we assign too much power to labels, and we attach our personal version or image of what “sick” should look like, and those who don’t fit the bill are either doubted, ignored, or assumed sick “in their heads.” We should all consider the many forms that ‘sick’ takes, and acknowledge that even terminally or chronically sick people don’t look sick at all times. No one would’ve guessed my dad had cancer, and that guy was dying! Looks are deceiving, and this immediate tendency to mistrust what we don’t immediately see or understand results in a basic lack of humanity. I am probably at my most functional that I’ve been since 2012, but I still walk a very fine line. It can and does go south easily, and it still requires help from my parents, a lot of rest and recovery time, a ton of medicine and doctors, and a lot of supine time on my own. (With Monty) And I am a lucky one, for sure. I know that people who suffer with anxiety/depression, bipolar disorder, OCD, Lyme, MS, Lupus and other chronic diseases suffer with similar outer doubt and confusion because their illnesses are not always easily seen from the outside. Labels, symbols, projections; they’re all powerful things, and they’re something we should consider and adjust on the whole before we make up our minds about something we may know zilch about.

I think I feel the need to write about this because ever since I entered the world of MECFS advocacy last year, I came face-to-face with just how poorly understood the disease is, how much misinformation/pure fallacy is out there and dominating the conversation, and how many people are getting it wrong because of the name alone. (Another thing I understand, it’s a stupid stupid stupid name.) I also have to consider whether I am helping to change and fix these misperceptions or if I’m at all contributing to them; and if I am, what I can do to fix it. I thought a lot about that after the wedding while looking through such beautiful pictures from the day, from the confines of my bed, knowing I wouldn’t leave home for a while. I didn’t think critically about this before last year, but I’ve learned up-close how much these things matter. The problem of disbelief is so much larger than gossip or personal dramas. This is literally public opinion shaping policy. It’s allowing the lack of intervention on a disease affecting millions of our own and many millions more around the world. How long will we allow people to suffer? How long will we let the accountable people look the other way? The world is looking at us and our treatment of this disease, and we are totally blowing it.

As soon as we show serious interest, I know other countries will follow suit. I know we will also make important new discoveries and possible cures. For now, we are at a stalemate that is costing millions of lives and billions of dollars. It’s almost hard to believe it’s true or possible after so long. And yet, here we are…

In the last year there has been awesome and much needed support from the public. The many signatures on the petition was surprising and still continues to humble me. I should say, it was that petition with such a substantial amount of sigantures that scored me the local news spot, a meeting with the Louisiana State Director (whom I spoke with for more than two hours about mecfs) and the reason I had a follow-up with our Senator Bill Cassidy. There’s more on the horizon. I’ll write more of that later. But our fight to be recognized, pursued and funded for biomedical research has come closer than ever in the past year, and we have to keep up the momentum. To quote my mom, “The timing could not be worse.” Hah, she is right. Politically things are somewhat of a shit-storm right now, and the potential for a slashed NIH budget on the whole obviously doesn’t work in our favor. But with the recent diagnosis of my sister, the possibility of backtracking our earned success, I have a renewed fire to fight and faith in myself, the advocates, the public, and the system, and an unrelenting hope that we can and will fix this. The timing might be terrible, and yet the truth is, there’s no better time for change than right now.

There are so many people in the advocacy arena who are doing big things–as for me I will continue to campaign for awareness in all ways I can think of, and restart petitioning for signatures. But I think possibly the most powerful voice is that of the public– not from those who are sick, but from those simply who see the injustice that’s happening. That’s who we need to hear more from, and seeing the amount of healthy people who have signed the petition already restores my faith in people all over the world will come together and make this happen. Thank you all again. Here’s to the next 40,000…

Health, Happiness, Fire

Tension of the Opposites

I often forget that my life is somewhat unconventional– That it requires further explanation to obvious meet-and-greet questions. I forget that answering the typical questions that arise with meeting someone new or catching up with someone old will often start a domino conversation effect that can go any number of ways. Sometimes it’s unintentionally critical questions, sometimes it’s the strangest of medical advice, and other times it’s this awful but easy-to-spot look that no matter what words they’re saying, it’s only the word doubt that’s written all over their face. Of course they’re not all this way, and sometimes when I let down my guard and am honest about my circumstances, it opens the door to friendships and closeness I would never have expected. There’s something about sharing a hardship (without being overly needy) and being heard openly, that evokes a certain trust between two people. It says I have seen the darkness too, and the space between them lessens.

There’s a whole spectrum of reactions, and even though I forget temporarily, for the most part I’ve grown used to and so prepare myself for the array of conversational tones and and twists and turns our exchange may take. It took a while but by now I can usually see where things are going fairly quickly and attempt to steer a conversation going nowhere either back to the other persons life or to an entirely new subject altogether. It’s for the best. Outside of the new and complicated, sometimes awkward anecdotes that come with simply talking to a person, my life feels very normal. On a personal, day-to-day level, I’ve grown used to the terms by which I live, and it’s usually when I share these terms with someone else, my large set of footnotes, that I remember how not normal my situation is. I long for the day when I can complain about my jerk boss, commiserate about the insane landlord of my apartment, (which in my fantasy always has big windows) and when my roommates are no longer my parents. No offense to them–they no doubt long for that day, too.

Living life with a chronic illness means a few things for me: It means being 32 and not working a real job. It means taking 25ish pills a day and still living under my parents wing. It means a lot of solitude and a lot of talking to the dog–probably more than to humans. It means I typically smell like BenGay or peppermint oil, and wear an ice pack on my head almost always. These things have aligned themselves under my own heading of conventional. They are my normal. But I forget that they’re not and require an often long, boring story that explains “my normal” that I’ve grown to cringe whenever I have to tell it. Reciting how and why you arrived at here and now, over and over and over out loud, you almost start to feel like a phony. I don’t know what it is, except that maybe after so long of recounting a story, one that could easily be labeled as unfortunate, in such a casual tone of voice that’s inarguably bored with itself, you begin to question how it is that you’re happy. How it is that you consider such ridiculous conditions as if they were commonplace and acceptable. You start to wonder why you aren’t more up in arms about the whole thing.

I don’t know when it became such a frequent place to end up, but lately I always find myself hanging in the tension between two opposites, struggling to find the fragile balance in the middle. Feeling bide between two of anything is usually unsettling at best, but can often (for me) be exhaustive torture. The two forces aren’t necessarily always polar opposites. Sometimes they’re merely dissimilar, but operate on the same plane. Think surrender and giving up. Gone unchecked, one can quietly ooze into the other, and suddenly you’re nowhere you ever meant to be. Sometimes they’re contradictory forces: maybe your heart wants something that the head doesn’t like. Other times it’s reconciling two truths at odds, choosing between two options and stuck in the messy mud of the middle. Since I consider myself pathologically plagued by indecisiveness, I seem to find myself living in this “tension between two” all the time. It’s trickled its way down from me flailing between two important choices, to agonizing over things as inconsequential as toothpaste. I’ve spent way too many hours of my life struggling in that aisle.

Currently, I find myself in the center of multiple conundrums, questions, opportunities, examinations.. Not all of them are quantifiable, and many of them seem to be ongoing or recurring. I lay in bed at night and the questions fly around the room like some kind of adult mobile made of cosmic curiosities and pitiful choices. Here’s an example of the things my brain has been tangled up with lately:

*How do I surrender to my circumstances and accept my reality without giving up on trying to make things better?

*How do I talk about being sick without getting caught up in my story?

*How do I write bearing the reader in mind without compromising authenticity?

*How do I maintain a sense of autonomy and identity knowing full well I am reliant on the help of others.

*How do I engage in advocacy that is proactive and realistic without losing myself and my worth in every day outcomes?

How do I satisfy this sweet craving without overdosing on gummy vitamins?

Welcome to what Carl Jung called “The Tension Between the Opposites.”

Jung taught that if you can withstand the tension between two opposites, if you can sustain the angst of being suspended in the middle for longer than what is typically comfortable, often possibilities and solutions will arise you wouldn’t have considered before. It can be an enlightening experience, but not easy, and often painful while in the thick of it. The waiting is tough. But if you can hold that tension, you’ll usually encounter what he referred to as ‘The Transcendent Third’. This new ‘third’ solution can involve both or neither of the two pieces you’re between, but in the wait, you can reach deeper into consciousness, and often that’s where the wisest answers can be found. “There will be two opposite approaches for solving it. Neither solution will be correct, but must undergo the tension that will result in a third approach.”

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“There will be two opposite approaches to solving a problem. Neither will be correct, but must undergo the tension that will result in a third approach.”

The world is so fast now. We rarely take the time to be still, to even allow a silence, mistaking it for boredom, or a space that must be filled. If you’d like to experience the discovery of the Transcendent Third, you have to answer the question that Lao Tzu posed on the matter: Do you have the patience to wait until your mud settles? I’d say most of us don’t. Or we do but fail to realize it, living among a pace that’s fast and noisy and nearly impossible to keep up with.

Lately I’ve given a lot of thought to the concept of surrender; something I continue to learn and accept almost every day it seems. Among everything that being sick has taught me, surrender seems to stand out the most. Difficult beyond words, but once allowed in, it can feel like you’ve been given a glimpse of the divine. It can be a beautiful thing, but for me, learning it didn’t come easily. Or all at once.

For years before 2011, my body spoke to me in a language called pain. Fatigue. It said slow down, stop, you’re not getting any better. And for years I downplayed, dismissed, and sometimes outright denied to myself that there was a real problem. As things were falling apart inside, I strived to hang on to all the attachments that the illness slowly started to take.  I thought as long as I could keep my job, it lessened somehow the reality of having a disease. It diminished it to an anecdote. I had it, but it didn’t have me. As such, surrender came in pieces. Determined as I was, I couldn’t bare the tension of working, being sick and trying to get better. Convincing myself I could multi-task, I was actually just failing at three at once. Hah. Something had to give. I

will never forget that conversation in Andrews office, me holding back the tears as best as I could, saying I didn’t want to go. I had done my best, but my body just couldn’t take it anymore. Neither of us wanted me to worsen. We hugged and said that thing people say even when they know it’s not true. “I’ll see you again soon!”  Don’t worry, I told him. But he did look worried, something in his eyes. I punched my time card for the last time–yes the 100-year-old gallery still used time cards. On that drive home across the bridge to my parents house, I cried the whole way. I felt more lost and afraid than I ever had.

That was the end and the beginning. The next two years would be the hardest–the most brutal on every level. I resisted. Lied to myself. Conceived of ways I could return to the path I was on before getting sick. It felt like someone had sat on the remote control of my life and accidentally pressed the pause button. There was an incessant feeling that wherever I was, there was somewhere else I should be. Not this. Not here. I was sick when I should be well. In California when I should be home. At home on a weekday when I should be at work. I never had an inkling that Yep, this is right where I’m supposed to be. I thought if only I could survive this “wrinkle in time” I could resume the life I’d had before. Just like that. As if time moved in any direction but forward.

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Bye Old Life

I’ve had six years to adapt to the life I would feel proud to call my own again, but it certainly wasn’t  the one designed by my hand. I think the final straw that led to surrender was simply a matter of being too tired to fight. Somewhere after year 2, I let go of the last of my life plans–fed them into a shredder and watched as little paper ribbons emerged. Surrender. One part complete fear, one part total release. In hindsight it’s clear that the fear was mostly ego-driven. If I wasn’t designing my own outcomes, who or what was? And by the way, who could know the path I should take better than me? (Laughable now)  But the release had one up on the fear. It meant making room for the life that was waiting for me to finally begin. In fact I was the hindrance. I was the one sitting on the remote.

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My Life: Mid Rise Skinnies

After six years in the game, my life doesn’t feel foreign or as though it should be another way. It feels more like a perfectly worn-in pair of jeans. The ones where the denim is at that awesome level of soft and is tight and skinny in all the right places. I think jeans are one of the most personable clothing items. Have you ever tried someone else’s jeans on before? It feels like trying on clown pants. In the beginning, that’s what being home on a Tuesday at 2 pm felt like. Now that’s just business as usual.

I now struggle with the idea that if I surrender too much, if the circumstances of my life simply feel normal, I’ll become complacent. I’ll forget that it shouldn’t be this way. I’m not supposed to be sick all the time and spend vacations half conscious on the couch. But it’s become the norm. I don’t want to become so desensitized that a bookshelf filled entirely of my prescription bottles doesn’t shock me at all. And I don’t want to lose the fire in me to change the things we need to change, as a community that fought long and hard before I ever came around. I want to embrace and be happy where I am, but I want to be proactive. And so I’m trying to find the balance between enjoying the present while also remembering that there’s an injustice at play here, something that needs fixing. And I know that I have to try and help fix it.

I could easily be the one too sick to fight, just like millions of others with MECFS are, but I’d have no doubt that the warriors in the community would continue to work until it’s done. The baton might change hands but the balance remains. And just because I’ve tapped into joy and surrender and gratitude where I am, doesn’t change the fact that I am part of a community, one that has fought for this cause for decades. I owe it to them to do what I can. I am constantly seeking a way to advocate for what I know is right, but remain distant enough that my ego doesn’t get drawn in to the wrong efforts. It happens all too easily.

A very strange thing that might be hard to believe– I don’t actually love talking about being sick. Gasp. And I feel that I’m kind of terrible at the whole advocacy thing. Luckily online my awkwardness doesn’t shine through as much, but it’s still a struggle for me to solicit people to help, even though I believe 101% in the cause and am certain I’ll continue petitioning and fighting for it until the deed is done. But how can that be?How can it be true that I don’t like talking about being sick and yet I have an entire blog devoted to very subject: “Life through the sick lens”?

I’ve toyed a lot with these opposing truths and tried to understand how I could want both. And I think the answer is somewhere near this: By speaking honestly about the experience, particularly the chronic illness experience, which I found to be largely misunderstood, and by foregoing the typical polite response or social etiquette and supplementing it instead with what is true, I open up a space for us to move closer together instead of further apart. By writing about a topic that can be very isolating, I’m attempting to give people a chance to understand, instead of blindsiding them with “Well I live in mismatched pjs and I haven’t showered for a week because I’m too weak to shampoo my own hair and oh, you’ll never understand!” (Runs out of coffee shop. Trips. Continues running.)

Contrary to what I hear people say all the time, the world is actually full of good people, and most of them aren’t trying to hurt you. 99% of the ones I know are exceptional, and they are sympathetic and helpful about my situation when given the chance to be. But you have to be willing to reach out, which means you have to expose a need, and sometimes that’s the hardest part of all. I only know if I keep too tight a lid on my own unusual experience, hellbent that the world will just never get it, I will most likely be right, but it won’t be the worlds fault.

So, life continues, seeking out the peace in the middle. Waiting patiently for the right answer to arise in so many scenarios. And holding the tension between opposites long enough to tap into something deeper and wiser than I ever could be. It’s not the easiest thing, but it sure beats pulling my hair out between Crest Multi Care and Colgate Total at midnight in Walgreens. The point is to be still and patient, wait for the mud to settle, and allow enough time for my own transcendent third to arise.

Health, Happiness, Settling Mud

The Chronic Fatigue Syndrome Song. Hot Off the Street.

Since I have a large amount of free time, I started writing a song about ME/CFS. I called it “The Myalgic Encephalomyelitis But For Our Purposes the Chronic Fatigue Syndrome Song.” Slides right off the tongue right? I told myself if we hit 40,000 signatures, I’d post the song and lighten things up a bit. There’s not much humor in chronic disease talk or advocacy, but I think we could all use some. So, 40,000 signatures later..here we are. A few things.

But first, sign the danged petition. Did you sign it? Just sign it. Did you? Click on the link and type your name. Did you do that? OK, well then do it now. I’ll wait. Sign it. You’ve signed it now? Great! I don’t have to keep saying it? I’ll stop. Cool. OK but so just to be clear you signed it right?  Thank you. I love you. https://www.change.org/p/increase-research-funding-for-me-cfs

1. I don’t claim to know how to play guitar. I learned six chords on it a few years ago and can fumble through a few songs, most of them by Taylor Swift as her songs consist of the same four chords. I love it. Anyway this is why my song is only two chords. Sorry.

2. Monty makes some background noise now and then that I was too tired to edit out. He was chewing on some toy the whole time I played. Then in the middle of verse 3 decides he wants to play tug of war. He’s never had great timing, and we’re working on that.

3. This is more of a philosophical thought in general that I had while writing the song–maybe all diseases should come with their own jingle? That way tragic news might be a tad easier to take. Like “hey hey hey, you’ve got cancer in you brain!” Or “Looks like you’ve got a case of GOUT, hey! But we can fix that, no DOUBT, hey!” More creative lyrically, but you get the idea.

4. I’m sure someone will comment that I don’t look sick. Understandable, and truthfully I have improved from how I was last November when it was challenging just to walk. But looks are deceiving and they call this disease invisible for a reason. All those pill bottles behind me are my own, that I’ve been haphazardly saving for the last 9 months or so. I’m wearing my pajamas but threw on a bra and some lipstick– you know, to be professional.

5. This song is for anyone who is sick, including those with chronic illness, and especially ME/CFS. I hope it makes you laugh or smile, because I know that being sick is a weight you carry around all the time, and it’s heavy and intense to deal with daily. Sometimes you just have to step back and laugh. So let’s have some fun.

But make no mistake, this took work and has a specific goal. Rhyming with adrenal insufficiency is no easy task!  I crashed week after week just trying to record it (I know, and it’s still poor quality) but I wanted it to be decent enough to make the rounds, maybe inform some people, make others laugh, and perhaps land on the desk of someone who can help us. You never know if you never try. I’m ready to fight for this as long as it takes, sick or well. So until we get the adequate funding, prepare for more creative/ridiculous forms of advocacy, and please help spread the word. Yall have been a huge help, keep it goin! Thanks again, and enjoy :)

Health, Happiness, and Disease Jingles

Brain Not Work So Good

I feel this modern artwork both describes what it feels like in my brain recently and also represents the clustershit that my writing has been. At least spaghetti brain can look pretty. The writing is a mess.

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I say the as if it’s someone else’s. My writing. Me. I’m doing that thing where I start out simple, on course, paving a promising path toward something that makes me think but that I can also wrap up and understand in the end. There’s never a lull for words or ideas. They pour out–I have a lot of time to think them up. When I’m not writing them in my notebook or typing them on my phone I’m usually just thinking of nice sentences in my head. I’m mind-writing. Just watching sentences fall into place mentally, perfectly, and I actually feel relief when these sentences are formed. The kind of relief you feel when you  get in your car the first time after you’ve cleaned it, and it was dirty for a long time before. It happened on the way home from the pharmacy yesterday. Sadly, I remember the relief more than the sentences or ideas. I tell myself I’ll remember this later, but I hardly ever do. On rare and momentous occasions, if I just sit down and start to work it will pop out like a wine cork. Ah! There it is. But I hesitate to think how much has gone un written because I wasn’t near a pen or a computer, or that I actually was but just didn’t put the effort into getting it down. Owell. That’s kind of a self-important thought. And, I guess we have to assume the work we never made, lost now somewhere between sleep and consciousness, was probably crap.

The words pour out not because I’m FULL of words and ideas, but because I have no requirements. Few expectations, no deadlines. No assigned topics. And no financial incentive. It’s just a hobby that I treat like a job.  Except that I’d be fired by now and there’s no 401K. Maybe I have too much freedom, so the meandering and circling is just too easy to do. I struggle because it starts off clean, on track with a promising topic and flows naturally in one direction. Then somehow it turns into the literary version of a flying cockroach, darting around clumsily in different directions and you don’t know where it’s gonna land next and you know when it gets killed it will make a crunchy sound. Sorry scratch the last part. I don’t know what it is. I like the words and concepts emerging,they’re just not always in order. Or they’re crap.

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Me Writing Crap

I know this will sound incredulous to some, but when I’m in a crash my brain starts to stutter and cloud way more than usual. In the past I’ve mostly been able to avoid the cognitive effects at least when it came to my writing. But I’ve been working on this post since Thursday. I know I know, easy to blame shortcomings on the illness. But the only reason I feel it is effecting me this time is because that reading stutter returned on Friday too, having to reread sentences over and over, and then just not remembering an entire page and having to start over. Luckily I rested mostly on the couch while Monty quivered near me at the sound of America’s birth, and two friends brought me food! It was nice. Yesterday I was more clear headed reading wise, and able to finish my latest read, The Invention of Wings, which was really great. There’s a lot of good little nuggets in there. And I was surprised and inspired to learn in the authors note, the two main characters were real–born into money and a large plantation in South Carolina around 1830. They would eventually became devout abolitionists and publicly denounce slavery and fight for its end, sharing the cruelty they’d witnessed with their families own slaves publicly, and the world didn’t quite know what to do with them. I enjoy characters like that. It was enthralling and I recommend it.  I need a book club.I just feel like I’d never show up after the first meeting. Anyway my mom says she’ll read it so that’s cool.

Where were we? My writing going in circles, right. I wrote for three hours on Thursday and three hours on Friday and collapsed like a whale on to my couch after both “sessions” and sortof spent the weekend that way. Yesterday when I revisited the words,  I realized I’d written over 4,000 of them, and some made sense and others were in the wrong places and would just require a re-organization of things. But I don’t think my brain can handle it right now. I’m leaning towards spaghetti brain. Noooo. Here, I’ll find another pretty picture.

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Nice, no? That Jaime Rovenstein is really good at creating non-crap. Check out more on her website.

Also, I think this is why agents exist. Why good writers have agents. Proofreading! There’s a word I haven’t heard since college. Maybe that’s what this blog is, one long proof-reading session and one day it will turn into something else that actually pays dollars and cents and I can get an agent or whatever. Or maybe I just need a small person to stand beside me and ring a bell when I’ve written and rambled more than 10 minutes. Now I’m doing that thing where I write about writing. So dumb. I should just write and post. I’m too cautious. I just want it right and I know when it’s not. DING, the bell rings.

I’m going to condense and summarize the absurd amount of words resting on a white page behind this screen. Because I Believe in Brevity!! That sounds like something..a campaign slogan? Specificity is important too. I accomplished neither, so I’m just going to sum it all up. OK. It starts with this sentence.

“I think the time for a typewriter has come.”

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How fun is this dudes art? Check him out.

 

Simple enough right? Then it drops off the edge. I find myself wondering if technology is aiding or prohibiting these things–writing, art, creativity and whatnot. Which somehow brings up the woes of scanning Facebook in the middle of the afternoon, and what those photos are actually capturing. I ask what it is about these photos that leaves me and others sad and yearning as we keep scrolling. (Authenticity, I think is the answer) Then I compare Facebook photos with those JC Penny photos a lot of us took in the 90’s, (dudes, the hair)  and explore physical momentos verses digital ones. Is my generation more or less authentic than the last one? Next I defend Millenials after continual insistence and wagging of the finger I encounter that says Millenials are all lazy, don’t know the value of hard work, we were given too much, have no accountability, and don’t appreciate what we have. This article is a great example which went viral a while ago and a few people posted it on Facebook like “Oh my God, so true.” Uhh, agree to disagree I guess. I agree that your point is false. Then, I deliver a personal conviction that it may not look like it, but I think as humans we actually are progressing, despite a lot of people my parents age saying the world is going to hell in a handbasket. I wonder if their parents said that too. And their parents parents. The fact is we’re still living among the good and evil that has always existed, which leads me to an exploration of that provocatively awesome question David Foster Wallace asked, which is, If we have all the things our parents never had and more, why aren’t we happy?

Let that simmer.

Then I wonder if is this a theme that has repeated itself throughout every generation. Always thinking the next one would surely have it easier. Each one working hard so the  generations after them might have what they never had, and do things they never did, and avoid the hardships that they had to endure. Maybe it’s hard to see that the world is still what it is, and human beings are still who they are, imperfect, after you’ve worked so hard to make it better. Especially if you worked your whole life to do it.

Maybe our notion of happy is off. Or maybe it’s not about happiness. It’s moving forward.

Then the neighbors fireworks got really loud and Monty was quivering below the desk and the writing turned weirdly patriotic. Fast forward from notions of happy and the formulas that work or don’t work, and also the American Dream. Achieving what we’ve historically called the American Dream does not mean achieving happiness. It means achievement. The happiness part is on us. The Dream is living in a country where we’re free to pursue that happiness pretty much any way we want. And I know it’s cheesy, but when you compare this country and our opportunities and freedoms compared to so many other places, we are danged lucky to be born into this one, with autonomy, opportunity and Chronic Fatigue Syndrome! Kidding. I think I have a very good life. I think a lot of people have very good lives and don’t even see it. Anyway this is the part of America that I’ll always be grateful for and humbled by, knowing the generations before me and the blood and sweat and tears that went into creating it, and I guess our job is to make their work and sacrifices worth it. I’m trying! I can’t say whether we’re a happier generation, I don’t know. But I think maybe the more important question is, Are we a more conscious generation? And to that I say, yes.

Now lets go blow stuff up.

Health, Happiness, Happy 6th of July

What Makes An Illness Invisible? I do I do!

There is a certain hesitation that comes with being sick with a disease they refer to as “invisible.” Who are they? And why do they call it invisible? The they is simple; it’s not so much a reference as it is a perspective. People and doctors don’t tell us our ailment is invisible. They simply don’t see it. And when you’re sick, especially for a long period of time, you become keenly intuitive about who sees it and  who doesn’t. With someone who does, a certain ease settles in, as though you could wink at one another and understand it completely, even if you’d met minutes ago. Your guard goes down. Shoulders relax. That apologetic tone leaves from your voice. Those who don’t see it, or don’t fully “accept” it, and it makes sense that some wouldn’t, by the way, given this disease is not visible and is rife with evidence that it’s psychiatric or something else, we can sense that just as quickly. There’s an immediate undertone of tension, it makes my cheeks hurt while talking, the way eating a lemon does. I can feel my defenses go up. No matter how strong I’ve become at sloughing it off, doubt or judgment, it still stings. ‘Rubs salt on the wound’ as they say.  It makes me want to explain everything, from the start, “No wait, if you just listen to how it all went down, if you knew how I was before this, what it’s like most days…” but it’s useless. For them but more importantly for me. For us. I have to cease needing the validation from others and just trust my inner self. ‘Choose your battles wisely’ they say. Turns out they say a lot don’t they.

I think about The Truth, the eternal one that we’ve gotten wrong so many times, absolutely certain with documentation and everything that we were right and that was that. And yet the world remained round and the sun chilled with black sunnies on in the middle of the earth revolving like dude, yall are way off. The truth has never required us to imagesbelieve in it in order for it to remain, and that often brings me comfort. It’s my ego that seeks the validation. Still, I’d call it’s pretty reasonable that you’d rather not be seen as crazy or a malingering pansy particularly in a vulnerable time of your life when you’re sick and need support. But this is another “invisibility factor” of the illness. And it matters because not being believed is a psychological kick in the brain. Or face. And that’s just it. We don’t look the part on the outside. People can’t see pain. Or a headache. Full body weakness. Mental spaghetti. Vertigo. The hit-by-the-truck feeling. Yada yada yada. All there is for “outsiders” is our word, and some take us up on it, others don’t. I’ve been surprised observing the fluctuation of strength in my own word, depending on who it’s being exchanged with. I’ve been struck that a doubter could make me doubt myself.

Besides not seeing it “on” us, most doctors aren’t going to see it “in” us either. Invisibility factor number 2. We’ll give gallons of blood and urine samples and get x-rays and MRI’s and whatever other procedures they can think of that insurance doesn’t really wanna pay for :). They may find little things, but for the most part it will all come back normal. Yaaay! Normal. But let me intervene quickly that the American medical term for “normal” is a bit flawed if you read how the numbers are configured, but that’s another issue. But the point is: invisible. Again. Even in our blood and our brains and our tickers! Sometimes they find little things off here and there, but in no way would consider this a part of ME/CFS, they’re all isolated symptoms. And so there you are either in an ER bed or sitting on the crinkly white paper of a doctors’ office being told you’re in fine health and that this is good news. But it’s also important to point out here, often these tests are ‘normal’ because most doctors aren’t trained on what to look for in regards to this illness. This isn’t taught in most med schools. There’s no standard diagnostic test yet which make makes things harder. Invisibility Factor Number 3: no research. The things a specialist test for are far more in-depth (and expensive) than a regular doctors work up: like NK cells, cytokines, CMV, HHV6 and many more. Right now, due to the lack of these specialists, it’s basically like having cancer and visiting the foot doctor. Welp, everything looks great to me! 

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I mean this is just a great picture

Still, a large man in a white coat, his degrees framed behind him, scanning through your labs and telling you you’re fine, to get outside, drink more water and eat more protein, (my experience) well, it encourages doubt. Even though I knew otherwise. I know what I feel inside, and it does not align with what I’m being told. And yet, when someone challenges your thinking, someone bigger and smarter and who you’re supposed to trust, you can’t help but consider that they might be right–thus, you might be crazy. Woohoo! But it’s important to recognize the reality of the situation right now, and also that this it’s changing. More doctors are being educated about the illness and presumably in the next ten years, you won’t have to travel to other states in order to find one who knows more than you about it. Not to mention, doctors make mistakes. They are humans after all, and they don’t know it all. So often after a bad experience with a doctor, or anyone for that matter, I have to remember, (or my mom has to remind me) that this is vastly misunderstood right now, and people aren’t acting out of malice but from misunderstanding. That lack of understanding is just beginning to change. Slowly. And you know what? I think the petition may end up helping with that. That’s my hope, anyway.

A friend of my mine asked a while back “Have you ever considered that they might be right, that this might be more of a psychological thing, and you could actually be cured by pacing your exercise and receiving cognitive behavioral therapy? Or do you feel totally positive that it’s a physical disease?” This is all under the umbrella that I fully accept and believe that mind and body are connected and the health of the mind is intrinsically tied to the health of the body. Still, this topic is not being brought up so much in the same way with other diseases. The intention is different. I admit didn’t know exactly how to answer. I felt like “techinically” the right answer was, yes, they might be right and this might have a major psychological component that could be an intrinsic part of it and a part of curing it. I should have to consider that these psychiatrists might be right. But I couldn’t do it. Even though I have looked at myself in the mirror and asked that question, considered this  many times Could I be crazy? Could this all be a front, could I be a mildly insane hypochondriac? Or could this all be ignited by something psychological from my childhood that I never worked out?” These doubts have run through my mind more than a few times. But in that moment, despite by own past consideration of other possibilities, I truly felt like a monkey being asked, Are you open to the idea that the others might be right, and you might be a giraffe? I answered in solid faith even though I felt myself nervous to do it. “No, I’m sure that’s not the answer to this.” I was in that moment, a total  monkey.

I am an indecisive, uncertain person by nature. It takes me twenty minutes to pick out what to wear, including pajamas. (Ahem, that’s what I wear)  I doubt and question myself a lot. I feel like I’m still learning how to be who I am. But, I’ve had twenty years of this invisible illness and gone through the ringer of its effects, felt deeply the losses it has caused. I’ve watched what it does to my mom, who I trust. I’ve read the stories and comments of thousands of others with experiences uncannily similar to mine. High functioning, happy people, (SANE PEOPLE) who had a rug swiped out from under them and were never the same. I think of the extremely current research and that of the last five years. I think of Lauren Hillenbrand. Of Whitney Dafoe. Of my doctor, Nancy Klimas. And I just can’t imagine at this point, that all of this comes back to some psychological trauma that just needs to be worked out with behavioral therapy and physical conditioning. This is what is being touted as a legit cure in many countries, including ours, but particularly England, Australia and a lot of Europe. This illness can be triggered by a psychologically traumatic event, but this only points to another pathway in which, whatever this disease is categorically, (presumably a virus that takes advantage of a vulnerable immune system) that it has varying opportunities in which to intervene. This doesn’t make it a mental illness. And even if it were, it still doesn’t justify the way it’s been treated up to now.

I wish I could say that I’ve never doubted myself or the disease again. But I have moments where I do question myself. But I think that’s normal. Enough people question your your point of view, inevitably you’ll question it yourself. I know that there are many more invisible diseases besides M.E., and that a lot of people have felt isolated by the facade it produces. I hope if they’re reading they know they’re not alone, and they’re not crazy. They’re just sick, with whatever: ME/CFS, Depression, Fibromyalgia, Arthritis, Lupus. I have moments where I forget what it’s capable of and crash myself for days. My mom always tells me, don’t play ball with this disease, it will always win. That’s typically how I’m reminded of reality when I doubt it– the state of my own body. It’s hard to doubt your own illness when you’re struggling to walk. And if that somehow isn’t enough, I close my eyes and go back to my inner, inner self, where the truth lives in stillness, without interruption. Where the world is flat. Where the earth orbits the sun. Where an invisible disease simply hasn’t found the cause or cure, but one day soon will be seen, will be believed, but most importantly, will be cured.

Health, Happiness, (In)Visible

P.S. The petition is still live and running! The new goal is to get to 50,000 signatures before I formally present it to Collins and Burwell which should be in July. I promise this is the last high goal. We stop at 50. And if we get there, I will sing a song on camera that I wrote called “Chronic Fatigue Syndrome and Other Associated Conditions” and post it to the blog. It’s two chords, and worth seeing. Mostly to watch me make a completely humiliating knucklehead out of myself. So sign!   Good night.

Me Vs. Myself In My Own Campaign

I have to admit something that feels a little shameful, and since this blog seems to inspire little dignity in me and zero reverence I’ll go ahead and do it.

Lately I’ve felt a schism crack inside of me. I don’t know what it is, a Campaigner and a Skeptic. I’ve been advocating these last two months since I began the petition asking the NIH for an increase in funding for M.E. I can’t tell you how tired I am of just writing that sentence, and probably if you’ve kept up reading this, your eyes just glazed over. And then I feel bad about feeling exhausted by it. I believe deeply in the campaign and I want more than anything for it to do what it set out to, which is actually to change things in a quantifiable way. This whole thing has been fronted by social media, so I’ve spent hours posting it on every forum, every ME/CFS Facebook page, (of which it turns out there are like 4,000), tweeting to the same groups and other organizations I’d only just discovered,  and any and everyone involved in the CFS community, including celebrities who I’d read had the disease. This includes Sinead O’Connor and Olympic Soccer Athlete Michele Akers, but I didn’t hear back from either. I thought about singing a version of “Nothing Compares” to Sinead but rewriting it with lyrics that explained the issue and pleaded for higher funding. But I never did it. I head Glen Beck has ME, but I’m just not going there. I just…I can’t.

I did actually write a song, a two chord song on the guitar, so far titled “Chronic Fatigue Syndrome” but we’ll get to that later. Similarly I’ve been sending emails to both friends and strangers, asking them to do something. But doing this day after day can start to feel..a little desperate. Sometimes I didn’t like myself. It feels like I’m asking all these people to do something for me, people I don’t even know. But I’ve had to constantly remind myself, when I start to feel like some kind of annoying car salesmen with poor boundaries, this isn’t really for me, but for something so much greater. It always has been. One look at the comments page of the petition and it’s so clear that we need help, and we’ve needed it for a long time. So if I’m gonna go for it, I need to go for it. STOP BEING A PANSY, in other words.

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Pansies are quite beautiful it’s a shame they’re synonymous with WIMP

Despite many people and organizations reading my story for the first time, I find myself rolling my eyes at my own account. And I think God, what’s wrong with me? Where’s my pride for this fight? I have to remind myself that this has been a 30 year injustice that started before me, and I am just trying to help fix it. And then I find myself even struggling with that word. Is this really an injustice? And I realize when I ask that, it’s coming from a failure of perspective. The insecurity considering my own experience with this illness, and my sense of normal, which is inside out and backwards. Even though being sick has been the hardest battle of my life, I still look around at things and think “But I’m OK.” Sick or not, I can find ways to make it all work. I have so many people and so much love behind me that I know I’ll be OK. But there are 2 obvious flaws in that thinking. To begin with, when I really break it down, I think

Mary, you’re living in your parents pool house. You aren’t able to work anymore. Sometimes weeks go by without leaving the house or seeing anyone even close to your age. You live in a town you have no connection to except for the pharmacy and three doctors. You hang out with your parents A LOT. Last week your own mother washed your hair for you in the bath because you were too weak to do it. And showers, let’s not even talk about showers. The point isn’t that my life not being normal is the problem, it’s that I’ve become so accustomed to what the illness has done with my version of normal. I forget, this is actually kind of a huge mess that I’m just living out as best I can, one day at a time. I don’t plan things, I can’t keep them. Somewhere, I sense a clock is ticking. It can’t last this way for long, right? And if it does, would I be OK with a life like that?

So is this an injustice? Yes. Read everything that’s happened with this illness pertaining to the CDC, HHS, and the NIH over the last thirty years, and it would be hard to call it anything else. Just because I’m surviving and ‘OK’ doesn’t say anything about the millions who aren’t.

And that brings up the second flaw in my perspective: I am not nearly as sick as so many others who have this disease. There is a scale to the illness in terms of intensity. A portion can function partially, but it’s hard to call those who are at the other end of the scale “sick.” Their bodies are shutting down. Confined to one room, unable to talk or tolerate sound, eating through a tube. Would we call that living? So many people have been sick for decades, their husbands or wives gone because life with this disease hugely impacts relationships. Some can’t understand it or even really believe it. One woman told me her husband divorced her because, he said, “I can’t watch you slowly die anymore.” People, especially husbands, hate feeling like there’s nothing to do for it, no way to help. And at this point, that’s basically where we are. You’re lucky to find a doctor who knows much about it. All of this reminds me; sure, you can make lemonade out of lemons, but there is a far deeper issue at play here, and it’s been slowly building into what is now a health crisis. It’s like the equivalent of the Velvet Revolution- a calm, quiet crisis. It’s gone on gently behind the scenes, behind the noise of other major news, of more important health issues, diseases with names that don’t make a person stop and hesitate whether it’s “real” or not. So I have to remind myself, this is beyond lemonade, and this fight reaches for things far beyond me. This is for the thousands of people who are far and away worse than me, who can’t fight for the change that has long been needed. “Sick” is such an understated way to describe them. “Slowly dying” is more accurate, just like the woman said.

So, I need to stop feeling apologetic for fighting for this change. Yeah, it’s probably annoying on Facebook News Feeds, but I’ve seen my share of weird engagement albums of couples in urban settings, and political rants and pictures of peoples lives that are awesome that make me feel incredibly small and boring. So, I guess it’s OK to annoy with a petition for a while. It doesn’t mean I have to become a full-time advocate, but I need to see this thing through to the end, and getting petition signatures is really only phase 1. I need to participate (at least virtually) in the protests this week, because it matters to me, and I don’t know why I feel like I should keep it a secret that it does. The real work might just be beginning–getting the big dogs on the phone, and in person, and making the case. I will say, I feel more far more confident reaching out to these people with 33,000 signatures behind the request. Printed out, that’s over 1,500 hundred pages of names. That’s impact! And that’s what I was looking for. So Thank You, all of you. A petition doesn’t work unless the people sign. The next phase will be interesting and could take a while. But, as always, I will keep you posted.

I see big change up ahead. Monty too.

Health, Happiness, Justice

“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for. We are the change that we seek.”            -The man, Barack

Breaking News

(Not Really)

Toward the end of this winter, I sat in a bathtub, tears coming down my face, and prayed for change. Things had been stationary and repetitive for too long. All my parts, body and mind, were beginning to go stir-crazy, and I’d given it a solid go. I think in modern times, being confined to the same two rooms for long periods of time without real socialization and not going totally insane is a kind of victory on its own. Things went from stationary to stagnant, and I’m pretty diligent about avoiding that disposition. Undoubtedly, it started to wear on me. I closed my eyes and envisioned the “path” of my life like a black dotted line on a treasure map–obviously th line had been very straight for a while. But I visualized that in the spring the dotted line would take a sharp turn, still progressing, still moving in the right direction or whatever, but that there would be a marked change. It would stir things up, it would springboard the stagnancy of sickness and the same two rooms and same faces at the pharmacy and pop them into the air like popcorn. I wanted an interruption I guess. And I felt tired waiting for one.

The thing about change, I was beginning to realize, is that it has a lot to do with you (me) and less to do with crossing your fingers and waiting around for it. I admit, for a long time in terms of the illness, I did that in a certain capacity. I’ve hoped and prayed for a cure ever since I became sick, but I was never involved or deeply curious in the process of how that could happen. I wasn’t a part of online support groups for ME/CFS. I was never really involved with advocacy, and I didn’t follow the latest research or science. Sometimes people would send me articles from The New York Times or some Magazine that would tell the story of someone sick, usually summarize the history of CFS mostly on the surface, and then reveal the prognosis, which was that there was still no cure and no approved treatments. Once, I was sent a New York Times article called “Chronic Fatigue Syndrome No Longer Seen As ‘Yuppie Flu’” You’d think in some way, a major and respected newspaper validating your disease would be a comfort, but to someone who’s been suffering for years from it, it was more like Yeah, no shit. It’d be like seeing an article titled “Water Found to be Necessary for Survival.” My mom, who follows every study, reads up on trials and new findings, would update me often in an optimistic tone. But I can remember, in the first year after the crash that I’d stopped working and was living in their house, I felt angry and remember telling her I didn’t want to know about any more studies until there was one that found the cure. I was clearly still in the “acceptance” phase of this whole thing, and that was a prissy reaction to say the least, but I just never wanted to get pulled too far into the “community” of the illness. I felt if I entered in too far, which would be easy to do, it’d take me over, consume my identity. And I battle myself a lot in avoiding that transition–I don’t want to turn into the ‘sick girl.’  There are just so many other things I want to do and express, and sometimes the illness feels like it controls too much of my outer life, after already having control of my insides. It’s a strange, duplicitous struggle to face. And some days I feel like the illness wins–not in terms of my body, but my mind. That’s what I try to avoid.

Last week, a news crew was at my house. I say crew, but it was really just two people. An interviewer and a cameraman from Fox8 News New Orleans. It’s funny how it all came to happen, but stars aligned in certain ways, and now news-anchor Rob Masson was interviewing me in our living room. We talked about the petition, about getting sick with this weird, elusive, invisible, strange disease. He was a great interviewer and he understood the illness well. You can tell when someone gets it by the questions they ask. For instance, a person who doesn’t get it asks questions like “Do you think if you did more during the day, you might sleep better at night?” And a more intuitive person might ask “So how do you prepare for an event you know is coming up? And how long do you pay for it physically?” Rob and I had talked already on the phone about the disease, the NIH, the history and the campaign for nearly an hour a week before. Then the day of the interview they ended up staying two and a half hours at our house. (It will probably be a two minute spot) They spoke with me, my mom, and shot footage of Monty, of course. . Normally, the idea of “being on the news” even local news, would stress me out. Mainly because internally I’d think “Why do I have any business being on the news? I’m just a sick person living with my parents?!” But the reassuring and truthful answer was that this really wasn’t about me. I’m an example of one among millions of people living with the disease, and I felt I could speak up for it in that way, provide an example of what it “looks like”–which is nothing. You couldn’t pick a person with ME out of a crowd, but it’d probably be the one lying down using some odd piece of furniture as as a bed. I was/am exceedingly grateful this petition made the news, mostly because I think any press that shows what this disease looks like and is told from the angle of someone who is actually sick, not a psychiatrist speculating about it, is always a good thing.

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(Not Rob Masson)

But the real angle was the campaign, which is also not about me, but about the NIH, and how their lack of funding and research has left millions of sick people without a place to go. You can count the number of CFS specialists with one and a half hands. The reason I felt optimistic writing this petition is that this is a problem with a very clear solution. It has always had a solution, and in every article, blog, comment debate, news story, I see the same desperately needed solution being pointed out, which is funding. The disease is complex, the research and studies and science is complex, but some of the top virologists and infectious disease specialists in the world are signed on to study this, say they can solve it, they are simply lacking the funds. It just seems so simple in that regard. It’s obvious this can’t be ignored anymore. This is an epidemic, and I know that word is overused a lot, but when millions of people are out of commission, and the country is paying billions a year in lost productivity and medical expenses, I would call that somewhat of a health crisis. So, it’s time. And Mr. Collins and Secretary Burwell can make it happen. I know they can.

I’m still learning how to be an advocate. I don’t know if it’s really my calling. My sister on the other hand should consider this as a career option, she’s really good. :) I’m still trying hard to attain more signatures because I’d like to get as many as possible for the protest on May 25th in DC. The power in this method of “protest” is in numbers, so I’m still thinking “Hey, we can make it to 35. And if we can make it to 35 we can make it to 40!” 40,000 has a nice ring to it, a more sturdy number. Anyway, I trust we’ll get the number we need. And I still have the hesitancy of not letting this fight, win or lose, enter too deep into my identity. In my attempt to share the campaign with every CFS organization, I’ve sort of leaped into the Chronic Illness Community…and everything there makes sense. I see myself in all the stories. I recognize the descriptions. I understand completely what people mean in their emotions and discouragements. But sometimes I have to just dip a toe in..share the petition and then get out. If I spend too much time there, I don’t know, I feel too consumed by it. And those are my brothers and sisters! It’s not that I’m turning my back on them, I just live it and write it enough as it is. I guess I don’t need reminders right now. I’m more hungry for change.

This petition I hope can speak for us all. Maybe I will just always be fighting to remember who I am, to hold on to some remnant of myself that was there before I ever became ill or ever started “fighting for a cure.” In one part of me, a flame has been lit and I feel ready to take on the world and achieve this change. Halfway because I’m bored of it. It’s so obvious what we need to do, and I know it will happen eventually, I’d just like it to happen sooner so we can all get on with other things. The other part of me thinks I can write through the filter of being sick till the cows come home, but there’s so much other subject matter out there. There’s so much else to do. And I want to explore it all. There are so many other stories I want to tell. And I think I will. I’m just a little in between worlds for now. Fighting for this cause and also trying to stay conscious of who I am without all of this. Dive too deep into anything and you can get stuck there. Maybe dive is the wrong word. Attach. I don’t want to become attached to this. I want things to change. And then I want to travel to Japan.

So, that’s what’s happening in my neck of the woods. Physically I feel like absolute crap, which is the most efficient and motivating reminder to keep fighting for this change :)  I don’t know when the news segment will come out, though I can already anticipate my self-consciousness about it. I don’t like seeing myself on camera or hearing my own voice. I am fat from the steroids and hardly even feel like I’m in my own body anymore. And it’s a vulnerable thing–I never imagined I’d be interviewed by someone and talk about being sick, 31 and living with my parents on TV. I mean, this could really ruin things for me on Tinder. But the TRUTH is, none of that matters. It’s not about me or my story or whatever I’ve lost along the way. This is about the campaign and what’s next. It’s about what we’re asking for, which is a very specific thing: $100 million bucks. It’s not that much money, come on! But, if the segment goes online I will try to post it here. So, once again, I will shamelessly post the petition, and if you feel like signing or sharing because you haven’t yet, I recommend you do so I can stop writing about this stuff and my sister can stop pestering every person she knows to sign it. Amelie, I love you. Thank you again everyone for the love and support and signing. I guess that dotted line I envisioned making a sharp turn ended up happening in a very strange way. Life is funny.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure

Health, Happiness, HEY MOM IM ON THE NEWS!

The Campaign

OK, so I can’t actually link the above image that says CLICK HERE TO SIGN to the page where you would actually CLICK SOMEWHERE TO SIGN. Blogging problems amiright? In other news, you can click here to sign.

If you haven’t heard, I’ve begun a campaign on change.org. I’m petitioning the head of the National Institute of Health (Francis Collins) and the Secretary of Health and Human Services (Sylvia Burwell). If you have heard, and you probably have because I posted it everywhere for a while there, I do apologize for the redundancy. But for the first time, it seems like the right people are at the helm of the organizations that can immensely influence the potential for way more research (funds) for ME/CFS. I’ve written previously about the shaky if not scandalous history of this weird disease and the mishandling of it (i.e. neglect) on a federal level. As a result of being dismissed and grossly underfunded for so long, treatment-wise we are exactly where we were back in 1987. That was the year my mom got sick, when the disease was hardly even heard of. But it’s a new age, and there are a lot of people fighting out there, and this is just one more way of attempting to be heard, influence important change, and help increase awareness. Plus Monty pressured me to do it.

I’ve never thought of myself as an activist, and I still don’t really, but for the first time I’m feeling the strange pressure to make something happen. Anything. I wrote the campaign on a day when I was feeling really sick but also really hopeless and discouraged. I thought, I can’t sit here and feel bad about this anymore. I had to try. It’s interesting because on one hand, I can’t rely solely on the discovery of a cure to make me happy or my life complete. I forget that even healthy people have a hard time. Life, as discussed and agreed upon with most friends and family, is just really effing hard. It just is. Even if by all accounts you have everything one would require to be “happy” or feel whole. It’s so easy to just assume that everyone else has all their shit together–that they’re drinking champagne on a yacht somewhere with good looking friends and laughing, or having family day in the park with their soul mate and three perfect children. Is that a thing? I don’t know.

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“Isn’t life easy?” “Oh my God I was just thinking how easy life is!!”

But I’m guilty of this. Many times when I’ve felt deeply the challenges of my experience, I’ve felt even more wounded by the idea that the rest of the world is at a party that I’m too sick to attend. And that is fantasy. Sure, there are definitely people out there who have it way more together than me and are probably experiencing more joy than I am in the current era I’m going through. Even so, health, marriage, children, careers–these don’t necessarily equal happiness or fulfillment. Everyone is carving out their own unique path through this chaos, discovering who they are and hoping to live a good life they can be proud of in the process. I’m not positive, but I think “happiness”, or maybe I should call it “inner peace” or contentedness, develops when you are operating out of your true self, that inner person that we catch glimpses of when creating or carrying out our passion or holding the hand of someone we love. It can be anything, but I think there is person within all of us, a 100% unique super-person made of ultimate consciousness that we’re all striving to become. And when we follow the whispers of that super-person, it feels right. It feels stable among a lot of instability.

As I grow older, I think the biggest revelation I’ve come across is that everyone is figuring this thing out as they go. They’re putting on their pants in the morning and going to their job or raising their children or poaching an egg and some part of them has their fingers crossed that they’re doing it right. That they’re doing what they’re meant to. And somehow it can easily seem as though everyone else knows absolutely what they’re doing, where they’re going, and how they’re getting there. But even these people can’t be completely certain. There’s no real way to know, no standard form of measurement that says yep! you’re doing it right! We’re all living this particular round of life as each of our weird selves for the first and time. All we can do is our best, and follow that invisible thing that usually presents in the gut, telling us to turn left or right or that you’re talking to a crazy person or to get the hell out of some place. There’s an inner compass there, and we probably don’t listen to it enough.

My “path” the last five years, which continues now, has been finding a balance; finding a way to manage and tend to this illness and still construct a life that I like; one where I can sustain loving relationships and do some good and make a meaningful life I can be proud of. The balance is also about not letting my life or identity revolve around the illness. This is hard because truthfully, it effects everything. It just does, it should be called Pain-In-the-Ass Syndrome because that’s what it is and you kind of become one out of necessity.  But I know there is a way to use it to become someone better without letting it define me or my life. I know in order to grow and become the most conscious, full version of myself means experiencing every last drop of what is thrown in my path, including the insanely hard stuff, like life-altering illness. My mom reminds me of this when I get really down. Try to take everything you can from this, because these are the unique teachers that help shape who we ultimately become. And it matters that we grow into ourselves, that we become who we’re meant to. Otherwise we’d all be born with the same talents and passions and personalities. We are so awesomely diverse just to begin with, innately, and our experiences through life are even more unique, and this is what informs our distinctive selves for the better, if we engage it whole-heartedly as an opportunity to grow into who we’re meant to be. I don’t write that as though it were something easy. It’s one of the hardest things in life: to accept pain and struggle with open arms and surrender to it as a pathway to being better, more conscious, to living a more fulfilling life. Maybe that’s how to know if you’ve done it right..if you ring out the rag of your life at the end and not a drop comes out.

This post was meant to simply re-post the campaign, but it’s been a tough few weeks mentally and physically. What am I saying? It’s been a tough year. And there’s always words that need letting out. Otherwise cobwebs gather up there. Anyway, last week there was such an amazing response from family and friends, (and total strangers), to signing and sharing the petition, and that was truly humbling. I cried. Like a lot. I don’t know if this will work. I don’t know if it will get enough signatures to get the attention of important people. I just know I felt an ache on a particularly hard day that craved a bigger change and I had felt it for a while. So this was a place to start. I also wanted to remind people suffering out there that there is a lot of action being taken toward working with these agencies and finally getting the support and attention that the disease has needed for so long. Don’t lose hope. We WILL get there. Wherever there is. The good news? We surpassed 1,000 signatures! What does that mean? Technically nothing, except that 1000 people took the time to sign it and comment and share, and that is an awesome feat in itself, and I hope we can keep it going. I will post the campaign again here, and maybe find a better spot somewhere on the homepage where people can sign. I’ll figure something out. In the meantime, let’s all put on our pants, (or PJ’s if you’re sick) and pretend we know what we’re doing. In other words, let’s try. I have to remember to try. And you do too.

And then sign the campaign.  Pants not required.

Thank you, thank you, thank you so much to everyone who has signed and donated to help circulate this campaign. I think my sister is responsible for half the signatures herself that she reached out for. She’s a better campaigner than me, maybe I should hand it over. Thanks Amelie! And thank you to all of you. It truly means so so much, every single signature.  I will of course keep everyone updated. Mostly, I’m filled with humility and gratitude for all the support my family and I have received. Keep it going guys, I can’t tell you how thankful I am, except I just did and I’ve said it 10 times now so I’ll stop. But it’s really nice for people to feel that their voices have been heard, especially sick people who can’t get out there and fight, and I think this campaign is a way to facilitate that. OK ENOUGH TALKING GOD. Here it is. Sign it for Pete’s sake!

Health, Happiness, Pants

Below is the link if you’d like to copy and paste the campaign to send in an email. Otherwise, just click here and sign it. Thank you. I love you. A lot.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure?recruiter=12447733&utm_source=share_petition&utm_medium=copylink

 

 

 

 

You Know What To Do

(Or if you don’t, it’s Signing this petition..that’s what you’re supposed to do..just in case there is any misunderstanding there. OK then..)

Friends, Families, Duders,

This is one of the most important posts I’ve published here, and I need your help. It’s been a very sick winter/spring for me and I’ve worked hard to try and stay positive, maintain hope, and keep from getting overly discouraged. I don’t always succeed in this, but I try my hardest and I have a lot of reinforcements: my dog, family, loving friends, and funny internet videos that truly sometimes help shift me into a lighter shade of blues. I found that one another way for me to maintain hope and stay positive about my life is to at least try and influence change in regards to how this disease is treated, both socially and federally. Things have already begun to change in a few ways in just the last few years, and I have always held onto the hope that I will see a cure within my lifetime.

Yesterday was particularly hard for some reason. Physically things have been roigh, but emotionally I was really feeling it– all of it. Sad, mad, hopeless and discouraged. My phone rang and it was my sister calling, but I didn’t feel I could even get it together enough to pick up the phone and say that sinply, I was a mess. So I texted it instead and after going back and forth a while, I decided there Was this one thing I could, something I’d been putting off for various reasons, none very good, that could help pull myself out of that dark hole, and that was to invest myself into a cause that may have the possibility of producing real change, of making a vital impact on CFS/ME. I think and pray often that other people will do things and enact change and that I will eventually reap the benefits from them. But that’s a somewhat limited hope. And it leaves all the possibility and power out of my hands, when the truth is we all have the means to effect change (even be it extremely small) if we believe in it and work hard enough. That’s what inspired the campaign I wrote using the platform change.org, which helps deliver our message in a very efficient way. I like that it gives a chance for all our voices to be heard, bed-ridden or not, and only requires a few seconds and click of your mouse t have it be heard.  It’s a great alternative in lieu of a “March for CFS Awareness and Funding!” I think we all know how that would turn out…

We’d start out like “Yeah!!! Race for the Cure!! Screw CFS!!!

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Let’s Run and Raise Some Money People!
But then in a matter of, oh I don’t know, 5 minutes..the scene would inevitably change.

So, since a “Race for the Cure” is not exactly in the realm of possibility for a lot of us, but access to the power of the Internet is, I know that this is a great option for us. We’ve just got to acquire as many signatures as possible. Signing this campaign, which asks the NIH for a larger chunk of money to be allocated toward CFS/ME research, is a way to get this message across quickly and with bigger impact. I also like this methodology, because each time someone signs the petition, an email will be sent to the Head of the NIH and the Secretary of Health and Human Resources, and these are the people who have huge influence on how this disease is treated at the CDC–in particular how much money is dedicated to its research. This is our chance guys, so please please please, sign the petition and share it if you’re feeling extra awesome. I have copy and pasted the campaign here so you can read it, but you’ll need to click the link at the bottom of the page in order to sign it. That’s all it takes, the click of a button.

I thank you all in advance for taking part in this, and I truly believe if we circulate it in a wide enough circle, we can influence some major, desperately needed change. But we have to act. So sign it! Then get back to dicking around on the internet. I mean working, or whatever you’re up to. OK, here it is.

Petitioning Director of NIH Francis Collins and 1 other

Demand Increase Of Research Funding To Help Cure “Invisible Disease”

All I want to do is take a bath.

Before I became sick, that wouldn’t be so hard. Now walking is hard. Standing is hard. Some days, I don’t leave the bed and weeks can go by without my leaving the house. I call in sick to doctors appointments and take between 25 to 30 pills a day just to manage my symptoms, but they do not help the disease. I am 31, and I wasn’t always this way.

My heart is heavy knowing that roughly 3 million other people in our country are suffering from this same disease: Myalgic Encephalomyelitis. ME/CFS is a complex, multi-systemic illness that causes a lot of pain and disabling symptoms, specifically severe weakness and crippling fatigue brought on by even minor exertions–taking a shower, walking to the mailbox, or vacuuming the living room can land you in bed for days. There are currently no FDA-approved treatments and no cure, so we are left fighting this crippling disease in the dark. I was diagnosed with this illness at age 9, a happy gymnast at the time, at which point very little was understood about it and we were left with few options. I slowly regained much of my strength but at age 26 I suffered a severe relapse, could no longer work or take care of myself and had to move in with my parents. Despite twenty years having passed since my initial diagnosis, there are still no FDA-approved treatments and no cure. How could that be?

In a word: interest. In a bigger word: money. For more than a decade, ME/CFS has lingered near the bottom of the Allocated Funds list at the Center for Disease Control, never acquiring more than $6 million annually for research. This may sound like a substantial amount, but to provide some context, Male Pattern Baldness receives $12 million a year, so it’s easy to see that our meek amount is on account of low priority, not the result of insufficient funds. This is why I am asking the director of the NIH and the Secretary of Health and Human Resources to increase the funding allotted to the CDC to $100 million per year to research this devastating disease, so that the millions of people afflicted by it who’ve lost their jobs, families, and overall livelihood might finally have a chance at a healthy life again. Whether the lack of action originated from the stigma of the inaccurate, alternate name it was given in the 80’s, (Chronic Fatigue Syndrome) or the fact that it effects mostly women, I don’t know or care anymore. All I know is that we’ve waited and suffered long enough. It’s a time to come together and solve this health crisis, and I know that we are capable.

There is no better time for these agencies to step in and deliver on what’s been promised. The NIH received a $2 billion dollar budget increase this year, and two independent reports from the Institute of Medicine and the Pathways to Prevention have emerged recently calling for An urgent increase in research funding for ME/CFS, both noting how dire and overdue this situation is.

Governing agencies have always played a huge role in how diseases find treatments and cures. Similar illnesses like MS and Lupus are allotted $100 million each, per year, and collectively they effect less people. Due to these higher funding amounts, both illnesses have diverse and far more effective treatment options under their belt. This is how it’s supposed to work, and I know the current SHHR and director of the NIH are the right people to step in and change the game. We can do better, and so we should start now.

I used to have a pretty outgoing life. I was able to travel in college, fall in love, live in France, enjoy SEC Football, and graduate. Now most of my days are sedentary,  spending a lot of my time in bed with my dog and best friend Monty (see photo)– reading, writing, or sleeping. Sometimes it feels like life is passing me by right outside the window. Truthfully I am lucky when compared to the many people who are sick with ME/CFS and don’t have the help or resources that I do. I especially write this campaign with those extremely ill people in mind–too sick to have their voices heard and suffering alone. The point in all this is that it doesn’t have to be this way. This is something we can change. The country loses billions every year in lost productivity due to this illness alone, and so many of us would want nothing more than to enter the workforce again, if we could only take a shower without having to spend the next whole day in bed recovering.

Please help keep the promise of bringing this invisible disease into the light and dedicating the much deserved attention and funding to it that it’s lacked for all these decades. By signing you will help give millions of sick people hope that they are not forgotten, and show our governing institutions that we trust in them to step in and follow through with improving the health of millions of people, many who are desperately sick. I know with the proper resources, this is something we can treat and ultimately solve. Please sign and share this petition. We can do better, and the time to start is right now.

Thank you.

Mary C Gelpi (and Monty)

#WeCanDoBetter

Click Here to Sign

 

This petition will be delivered to:
  • Director of NIH
    Francis Collins
  • Secretary of Health and Human Services
    Sylvia Burwell

Click here to sign the petition, and copy and paste the address below to share it any way you want.

https://www.change.org/p/ask-nih-for-increase-in-funding-to-help-cure-invisible-disease

Again, thank you. #WeCanDoBetter. So let’s do it.

Health, Happiness, CHANGE

Hangers On a Ledge 

I run these ideas through my head, trying to piece it together. I try to make sense of a history that began before me and most likely, I’ll never really be able to figure out. Whenever you’re trying to find where things went wrong and how you can make them right again, it can all feel too big, too long ago to find solutions that make sense now. But still, the red part inside of me that stirs as though it has a body that can do anything, tells me this is something we can fix. We can do better–those words, they play over and over.

I travel back in time, the early 80‘s I guess. That’s when it started showing up in different places and on unexpected people, and the powers at large weren’t able to connect the dots. It’s understandable of course–the thing is literally invisible. Maybe the lack of pressure, lack of genuine concern about the disease began there–at a moment in time where it couldn’t be ‘seen’ under microscopes and wasn’t ‘believed’ often by the people who were suddenly sick and then never better. Maybe it was that the thing wasn’t killing anybody. Nothing fatal. Just a flu. “A yuppie flu” they called it. Not only are the sufferers alive, but they don’t even look the part! They aren’t sick on the outside. And rearranging my position in all this, putting myself on the outside looking in at this “movement” of unexplained sick people, I understand how this notion worked against us–how it continues to today. I think of the old adage “What doesn’t kill you makes you stronger.” That may be true in many cases, but I can’t say it applies aptly here. Not in regards to our bodies anyway, which upon the slightest push can fall and not again get up.

What isn’t killing me is not making my body stronger. I am the least strong I’ve ever been. The medicine has caused weight gain that at times has me and my face looking like a bloated pumpkin. It’s hard not to feel at battle with the thing that is intrinsically connected to me, and between us exists a fine line of fighting it and not fighting it at the same time. The whole thing is an honors class in balance. Some days are better than others, and I wonder, am I stronger, or am I just less sick today? There remains a difference. But I’m probably focusing on the wrong area here. No doubt that in our minds, the adage applies. When every day is a battle, beginning with waking up, with sitting up in bed and planting your feet on the ground and taking those first few painful steps to the bathroom, and doing this day after day after day, for some of us years and decades, well then no doubt your mind will grow stronger. It can also grow cynical, it can become   bitter–but many times you’ll surprise yourself with the strength you find and the moments you find it in. If you can keep trying, if you can manage a smile and a laugh, to be happy for other people, to still believe in something good, then certainly you haven’t been killed, and the battle has made you stronger. But that is our mind. Or the soul maybe– An almost contradiction that is both a connected but separate faculty from the body. Refer to the ancient philosphers and you’ll find some disagreement on the subject. I think in either case, for the mind the body is only temporary. And this brings a relief to me. Whatever happens to me physically, I won’t be carrying it forever.

I think of all the others, sick like me, dreaming and hoping and feeling desires like the rest. It’s strange how our indignant heads are alive and full, swirling with ideas and goals just as though we had a body that could serve them all–make them all come to light. But at present time we don’t. So call us “alive” and say we “look well,” but know there is only a very small surface of which most the world sees. And the majority of life with this illness falls far below it, in a darkness underneath that very few see. Some can’t see it. Some don’t want to. Others just haven’t had the access.

It’s funny thinking about that word “alive.” Sure, we’re alive. But there’s an important difference between living and surviving. “Just getting by” physically, is hard to equate with living. And worlds away from thriving, which might be called a pretty commonly desired endgame. We, however, are hanging on by a thread, and it’s hard to call an existence like that “life” with any real conviction. It’s similar to hanging at the edge of a cliff and grasping it by one hand– would we really call that hiking?

That is the point where many ME/CFS patients are: hanging on with a half-steady grip, still breathing, still a beating heart inside, but stuck; Left with few options but, you know, to go on hanging there. It’s hard to have a social life or work a job or vacuum your living room when all of your mighty, tiny strength is being poured into hanging on to this cliff. It’s no wonder why so many people have it let go. There is just not enough hands at the top, not enough people offering help to pull you up, and no safety net at the bottom. And similarly, just as pulling a dangling body up off the edge of a cliff is a difficult but achievable task, a “problem” with more than one possible solution, curing the disease that has millions of people hanging by their own one or two threads is equally obtainable. It’s just to a larger degree. But it’s far from Impossible. And it would involve a few similar tactics: some people at the top, those say, for whom walking and standing is not a great feat, and who themselves are not also hanging off the edge of a cliff, combining their efforts and resources and intelligence and getting to work; finding a solution, in this case a cure.

Never having the experience of rescuing a person dangling off the side of a high-up something or other, I imagine that a rescue is within the realm of human capability. There are many ways to go about it, and maybe I’m being sort of dense here, but I’d venture it basically comes down to people lowering themselves to the ground, extending their arms to the dangling human, and with a great amount of strength pulling the person up until he’s back on his feet. And while maybe the tactic is basic, the act itself requires a solid effort. Lifting a person from this particular state is like trying to maneuver deadweight– Much easier to carry a body which is alive even if incapacitated, than one that’s dead and stiff. I’d like to emphasize that I’ve never hauled a dead body around but I’ve tended to my share of drunk friends who had 6 too many, and it would take 3 of us just to get the person, alive with a LOT to say about the world and true friendship, into a car. The very obvious point is, saving the person who’s still hanging there off the edge while I write this, is a very doable thing. And I know I’m comparing apples to oranges, or apples to bowling balls, but I believe with every part of me that this issue of solving or at least better managing this disease has never been on account of inability. This is something we can do, we’ve simply chosen not to based on some very obtuse, very lacking scattered pieces of information that cannot be labeled as facts.

Me, I can’t rescue the hangers on the ledge. Of course I can’t, I am one. But therein lies the kind of rescue I can provide. I can hang off the ledge next to you. Because there is something undeniably comforting in knowing that whatever struggle you find yourself facing, that you’re not in it alone, and that others are in the same boat. Or off the same ledge as it were. Like I mentioned, you can’t do a lot while devoting all your energy into grasping your spot on the mountain and not letting go. I can’t march in front of congress demanding to be seen, nor can I carry out the hundreds of other ideas I have that I think could make a difference, could help change the state of things in a positive and progressive way. But I can do a little. And thanks to modern times, maybe my little could turn into a lot. As I write this, I am laying down in a dim room in my moms bed. I have a frozen ice pack on my forehead and around my neck, with a hot pack at my feet under the covers to help draw away the blood from my head, which is throbbing like always. And yet I am still able to write, thank you very much Steve Jobs, on this rectangular dense brick otherwise known as my phone. It’s often hard to sit up comfortably with the computer in my lap and so being able to jot everything down from just a small device is kind of a miracle. Very often, while either FaceTiming with my niece or buying dog food from my phone that will be at my door tomorrow, I this is it-we’ve arrived at the future. And yet, I don’t even know how a calculator works.

The point is, healthy or functioning or bedridden or whatever, there are little things we can all do, in our own way, that can help change things. And yes I hear how corny that phrase played out. Recently I watched an interview with an author and Benedictine Nun named Sister Joan D. Chittister. She was really inspiring to watch. An author of over fifty books, she writes about about many topics including spirituality, women in the church, and social justice. She is clearly leaving an amazing footprint on the world through her written and continued community work and is firing up others to do the same. She said she is often asked by people “What can I do to help change things.. To fulfill humanity or to better the world?” Her answer is very stripped down. “Something.” And her brilliance was immediately illuminated in her acknowledgment that speaking up for a friend is as big as a March on Washington. “Just do something. Wherever you are with whatever you’ve got. When you see an injustice or see something that needs changing, do something. It doesn’t matter how small, just do something.” Of course this answer resonated with me. I often get discouraged about the state of things concerning the disease and the state of my life and all the change I wish I could make happen but physically I am unable to. But I forget that small changes, small acts can have huge impacts when carried out diligently. I have so many big ideas, big dreams that I hope to achieve one day. But I also have to remember that one day is now, and it’s probably better to focus on what I can do today, as I am and with the resources I have now. And I think putting in the work that might feel small, that isn’t NY Times worthy, doesn’t mean it lacks the chance to make a difference. There’s a feeling you get when you pour yourself into something you care about, that seems to carry out a mission from deep inside you, even if you don’t know what that is exactly. I get that feeling every time I sit (or lay) down to write. I may not know for a long time what the role of all this is or how it will play out in the larger context of things later on down the line. I just know it’s what I can do now. It’s my something, so I’ve got to keep at it.

It’s been a pretty sick and trying few weeks for me, and I feel often that accessible moment of how easy it would be to just throw in the towel, or to become hardened by the relentlessness of the experience, but I want to remind the other hangers on the edge out there to hold tight, because not only are there rare gifts to find within all this, things will change. They have already begun to. Today will become tomorrow. And one day soon enough, this will all be a memory of something that yes, didn’t kill us and made us stronger. Hang in there. Hang on. It is going to get better.

Health, Happiness, Cliffhangers 

Love Letter To My Valentine

My love,

I’m well aware of your rare but genuine lack of sentimentality, and me addressing you on Valentines Day, one of those Holidays that makes all the whites of your eyes show when you roll them, is at least a little funny to me. I didn’t buy you one of those trinkets we often laugh at together. A “Blessed” keychain or one of those wooden picture frames with the non sequitur adjectives sketched in, meant to communicate love I guess. Love. Family. Hope. Frying Pan. Coffee Beans! Maybe we’re too young to be such skeptics. Maybe it’s our hiding ego, projecting superiority that we don’t need kitschy picture frames to allude to what’s real and shared inside of us. I’m in the card aisle at the pharmacy looking at a criminally large sized teddy bear holding a heart. It says I wuv you on it. It’s similarly tacky, but I consider purchasing it just for the laughs I know we’d have due to the scale alone; I actually don’t think I could carry it on my own. Then we’d feed it to Monty and watch him go straight for the eyes, as always, and fill the room with the cotton candy innards of a fifty dollar bear. But I hear your words play out in my mind “Don’t ever waste a dime on crap like that for me.”

I could lament about the commercialization of Valentines Day, but I think it’s all been said before, and I already know you’d agree. In fact I’d bet the farm you wouldn’t even bat an eye were the whole thing eradicated. You might not even notice! You’re funny. It’s not that you’re distracted, unaware. I’d suggest it’s the near extreme dedication to living a life of unwavering, powerful love, that is a fireworks display of a spectacle to watch. But for a lucky few, myself included, it’s a humbling miracle to be the recipient of. It sounds so dramatic to say, but I stand by that belief. It’s not hard to do. There have been plenty of reasons for your heart to have closed shop by now. To crack and break and crumble; call the whole thing off. And yet I’ve witnessed it come to the edge and never truly break. Instead I watch it explode like our day lilies in the spring, I watch it grow, astonished, in times that might normally make a person very small. And still yours expands, stretches, finds strength somewhere far in the depths and suits up for another day, knowing well the many things at stake when we agree to live a life. When we agree to love deeply. I don’t know exactly how one attains the capacity to love like this. I can only speak to the immense gifts of wisdom and friendship and compassion it has provided so many lucky ones, and me, knowing too well that ‘thank you’ isn’t large enough a phrase. I think how redeeming and salvational some of its outcomes have been. We’ve all experienced the pang of loneliness, and these last few years have shown me with unbridled truth just how far off and away we can feel, whether in a crowded room or a self-made island. Illness lends itself to its own kind of solitude, that can swallow you up whole if you aren’t prudent. Never have you let me drift too far down the rabbit hole. Sometimes sitting in a room with you, watching The Voice or Scandal or something I have no particular interest in, I feel wrapped in a sanctuary at the center of cupped hands, protected by the thick walls of a steadfast love that I know can never die. For two stoics like us, I can’t help but think ours is a Fairy Tale love, without an ending. We both know there won’t be one. Maybe I’ll submit it to Disney.

I keep thinking of this moment. A grey morning in December not long ago, I was more sick than usual. My central nervous system inflamed to a point that I could hardly tolerate sound or speak. My skin was buzzing, my hearing hurt, my thoughts and words felt and emerged mangled, and I couldn’t exactly articulate what was wrong. I felt like a shaken up liter of coke, hardened and about to fizz out everywhere, but there was no outlet. No where for the ‘fizz’ to go. My nerves felt inside out. When you came in the room, I tried to express what was happening but had trouble; honestly I hardly understood it myself. You didn’t look away, or demand answers or try to immediately “fix” the enigmatic pain I was in. You only said a couple words to me as you sat down on the couch and cupped your hand on the back of my head. “It’s going to be OK Mary,” and your voice cracked when you said it. My body felt as if it collapsed inside, calmed with this soundbite of peace, and the pressure slowly eased from that liter coke bottle. Tears came streaming down my face. I wasn’t that sad, truthfully. Certainly, all of this has been a trying time, for all of us, but there was a lot happening at once, my mind and body both being pulled and torn in different directions, and your very simple words allowed me the outlet. Permission. It’s pretty common for the tears to come when I feel so overwhelmed, overtaken physically. But it wasn’t your words exactly that moved me and conveyed your love with such depth. It was that your voice trembled when you said them. Just barely, and you’re not a crier, I know. I believed you, too, that it would be OK, but in that moment, you saw me. Accepting there was no quick answer here, no advice or platitude that could lift my heavy burden, you did the bravest and most beautiful thing a love can do: You sat down next to me, you put my hand in yours, and you shared what would normally just be my burden, my pain. You didn’t take the pain on, but you faced it with me. If only the world knew they didn’t need perfect words or answers to comfort and relieve us when we’re in the thick of pain. If only they knew that Love listens far more than it talks. A shoulder can mean more than a mouth. Love shares, it communes and confides. In joy and in pain. This is love. Our love. You helped carry the parts that I could not, and turned on its head what felt like momentary hell into saving grace. Just the memory of it strengthens me now.

This made me think of Nepo’s definition of Love. One I come to again and again, the most eloquent I’ve ever heard, and I often find myself reciting the words in my head: talking with friends, watching birds, kissing Monty. Somehow through your small action made with great braveness, your love materialized in a way I could not only feel inside with warm intensity, but could touch and see it, feel it in your hands. His definition for love is only this: Sudden Oneness. How perfect these two words capture what We shared that mangey morning. I warred with my same broken body, but I was also slipping into the outskirts of doubt and hopelessness; a place you know but helped lead me out of. His words so perfectly explain why when you love someone deeply and true, that when they cry you cry. When they’re happy you’re happy. Their joy is yours and vice versa. This is the beauty and brilliance of the oneness from love: lightening burdens and multiplying grateness. My tears continued but something about your unconditional nature made them begin to carry new truth in their waters. Hope, I think. Surrender. Reassurance.  But it was this small gesture that mattered most; allowing me as the mess I was, seeing and hearing me and not turning away or trying to quell it with empty phrases. I know how hard it must have been for you– the only other soul in that dark room, while mine laid strewn on the floor like a discarded garment. It’s not that you saved me, necessarily, but you saw me through the darkness. You stayed. So many fear that stillness of pain, enduring the murkiness of life when there aren’t easy answers to offer someone. You helped see me through it, bring my tired heart back into the light, ready to try once again. But first you let me die a little. Shed a skin I didn’t need anymore. Another testament to what brave love can do. Little deaths prevent big deaths. That was Nepo too.

It’s interesting, but when I recall this whole ‘event’ now, we seem to be alive inside a pocket of timelessness. There we are, the two of us, enduring what we did, frozen in an exchange that felt unearthly, and I can’t for the life of me feel or remember the passing of time. The moment is still alive. The lessons are wide awake, and they pour through so much of me: My fingers when I write. My soul when I’m discouraged. My intellect when my respect for the novelty of life drifts– I think of you and our moment and I know that there is meaning behind the pain, but it requires seeking. And luckily we don’t always have to do this alone. The Oneness that enveloped me, I think in fact may have been my first real glimpse of Forever. Or Eternity. Whatever the word for that otherwise incomprehensible concept is, for a fleeting moment I caught it, like a fast grab of a buzzing fly, followed by thick silence. In this excessively brief lapse in spacetime, I glimpsed the two of us–we were not just not apart, we were the same. We were one another. And the comfort was greater than a reunion you’d imagine would bring great joy. It comforted me. Humbled me. A powerful experience no doubt, but mostly mom I’m just plain grateful to know and learn from you this way. You’ve mastered a difficult and necessary art, and expressed and given it the way that you do, it’s something that will last far after you. And me. And my children too. Perhaps like Einsteins theory come to life one hundred years after the fact, that little ‘blip’ on a device recording an explosion a million years old, your love ripples will be felt long after you’ve gone. This is the miracle of true love. It’s so huge and yet it can be easy to miss. Like looking for mustard in the fridge tirelessly and finally coming upon it on the middle shelf in plain view, right in front of your eyes.

For me, this is incredible news! I half-knew already this was true. Losing and still knowing dad, our love somehow still growing, I knew it had to be real and not just the stuff of voodoo or fairytales. So I rest more assured now. One day you’ll die, and if life is good to us, it will be before me. But I don’t fear this occasion the way I once did. I know it will hard. The pain will be deep, as loss is not a one-way street. You lose more than a person, you miss a piece of who you were with that person. But like my clearly favorite Nepo says, Grief is a sign we loved them well. It’s in living this life, that when we give and receive love in its pure form like this, unconditionally, that it sustains and lives on. It works miracles! And it removes the sting and surprise of death, a thing we treat with pretty odd behavior in my opinion. But anyway, I can’t lie. I’ll be a mess. A sobbing heap on the floor. A shaken up bottle of coke. And where will I go? How will I recover? As I was taught of course–I’ll remember that moment of your bravery, to see your kid in pain once again and have to surrender; to be at peace with the mystery of these things. Just as you saw me through that, I learned that these moments actually do pass. That life does go on, the pain isn’t forever, and we wipe up our mess and keep going. I learned that because you lived through it with me, not because you sent a card with a bow that said “This too shall pass! Call if you need anything!” You are living love, in a beautiful form, and you are doing incredible work in the world because of it.

Perhaps by now it’s become apparent that I’m single. (Haha) But I can’t think of a more deserving Valentine, a bigger barer of gifts who never seeks out recognition or accolade for loving this well. You seem to perform the duties of love effortlessly, and I’m not only grateful to have you around and receive them, but I’m happy and feel lucky to learn what love is through you, how to give it and accept it from such a master as yourself. You’ve been through enough pain for 10 lifetimes, but I’ve never see you throw in the towel or give way to bitterness. Sure, you’re still a human being and a mother and you’ve made your mistakes. We all have. But you’ve never faltered on love and it seems to grow larger and more powerful in happy and hard times. Perhaps this is what the pain of experience does for us. I don’t know. I’m still learning. But watching your resilience and continued faith in life, in things bigger than you and me, in good things, in eternity, I know I’ll never stop seeking the answers. I’ll never stop trying to find the good, the value, the meaning in every kind of experience. Including the dark ones. Perhaps especially those. Thank you. For all you’ve done and continue to do. I don’t know how you’ve not collapsed yet of exhaustion, but maybe all that loving you do is an energizing force. It certainly is for me. Thank you. Keep going.

Oh yeah, Be Mine?

I love you.

Health, Happiness, Modern Romance

7caojdadi

P.S. I extend this letter to Marc, Doug, Nick, Amelie and their significant others for pitching in in all kinds of ways, helping carry me through the crap times, and loving me so well. You are all my angels. Thank you.