OK, there’s a lot of crap in this piece that needs to be re-written or scrapped. Taking on a writing project in the midst of a heavy crash may have been a bad idea in terms of writings to share because than crap like this emerges and I told myself I’d stick to the rules. Even reading it now I can see how convoluted my mind way, how easy it was to stray off topic. I’ve begun to improve since Sunday, particularly cognitively, and the writing really does emulate what’s going on during fog. I had to cross some out because it just meandered and was so clunky and unclean, it was very far from conveying my ideas properly at all. Anyway, as uncomfortable as I feel posting writing I don’t like and probably 2/3 of which I would change, or burn, this was partially the point of the project. So just trust and let go. Besides, there’s like 11 people reading this. I think we’ll all be OK.
Anyway, hopefully I’ve written a little better for day 4, or perhaps I’ll have more crap to share! Either way, it might be enjoyable. Just let go Mary. OK, I’m going. So go then. I’m gone. So go! I’m going! Just. Press. Publish. You Nitwit. Alright, see you tomorrow.
Let’s talk. I’m just going to write in list form. It’s easier on my brain for whatever reason right now.
I can’t explain how good it feels to be clean to such a degree as an hour shower will get you. But even better is the smell of my shampoo emanating from me now. I have so little to brag about, but I have to convey how good it feels to smell this FRESH people. It needed to happen, I was too sick for a while, and now finally it has. I sat on a geriatric shower chair instead of taking my typical bath. My wobbly, cinderblock legs are smooth. My skin is clean and feels almost cottony. I spent more than 30 minutes picking out Shampoo at Walgreens a while ago, searching for the perfect scent and I seemed to have found it. It’s left my hair emanating the scent of some subtle, tropical, white flower with tiny pink buds (and no nitrates!) Whatever that means. The scent is what Jennifer Anniston’s scarf closet would smell like. A shower is nothing, I realize. But in my bite-size, do-nothing world, a shower and this residual perfume of the Gods makes headlines. “Local Girl Smells Good!”
2. Secondly, in insanity news, the SAINTS JUST LOST. (Pause. Pour some beer out.) It was no one’s fault, it’s just that sometimes a defender leads with his helmet and interferes with a receiver in order to prevent a reception and somehow he doesn’t get called on it and essentially the whole outcome of the game changes. The non-call smelled like the opposite of J Anniston’s scarf closet. It smelled like what an old Southern man with leathery skin would say as he put down his beer with his eyes glared at the TV: AH HORSE SHIT!
3. Oh good LORD, my hair. This foresty, soapy, new car yet feminine fragrance…How is it even possible?!
4. OK. It’s not like the Saints losing was any one persons fault. These things happen. I mean just like sports writer Jack Baer wrote “If it wasn’t pass interference, the helmet to helmet hit almost certainly should have been called a personal foul. Either way the Saints should have received a 15 yard penalty and a fresh set of downs with a minute 45 remaining, which almost certainly would have effectively ended the game.” See? These things just happen.
5. Idea. Maybe I could charge money for people to smell my hair up close. This is how I can pay for the research that the NIH will not. $100,000 per whiff. It’s also how I can earn some kind of money if my Sofia-Dorothy relationship with my mother goes South or she dies in her sleep and I need to make money to keep the farm afloat. Either one. (Kidding mom, you know you’re my hero and you can never die)
6. I can’t believe that non-call just happened. I still feel so shocked and bummed about it. At the same time I feel so hashtag blessed to smell like flowery beechwood that it diffusses the sadness a decent amount. What if I smelled bad and the Saints had a playoff game that was STOLEN right out from under them? Talk about feeling crappy and smelling like craigs-list. I mean I wouldn’t say the game was stolen from us…it’s just that
8. Monty has gas. I realize Monty always has gas, but this seems specific and particular gas. It’s smells sad. It feels like especially offended gas that could only be expelled for a special occasion. He’s looking more sad than guilty, as though farts are the only way he can physically grieve. They are the tears of a game getting blown. The gas makes me sad, but then I smell my hair and feel glad. It’s funny that smells can make us temporally happy or sad. The realm and cause of human emotions is really pretty extraordinary.
9. Were we really supposed to lose that game or was it a comic hiccup? Some existential mistake? Tolle would say it was no mistake that we lost, because it’s the experience we endured. “The fire of suffering becomes the light of consciousness,” he says. But I fear tonight the light will burst from cars lit on fire and a ref that requires a 24/7 security detail. I joke I joke. I believe
10. I wonder if my shampoo truly comes from Maui. Something tells me it doesn’t. But due to the beautiful potency of its scent how could I care from where it emerged?
11. Cleanliness is Godliness.
12. Monty’s gas has begun to transition into “It will be OK. But that call was true and authentic stinky bull-dung.”
13. Like my mom says, at least we don’t have to be tense next week.
14. BUT MOM I WANNA BE TENSE I JUST WANNA BE TENSE WITH REFS THAT MAKE SURE THE PLAYERS DON’T BREAK EACH OTHERS HEADS!!!!!! Fine I’ll go to my room. No, YOU’RE being obnoxious! …Yeah I have some darks I need washed.
15. Saints, I’ll be your forever fan. Next years is ours. But on a personal note, you’ve given so many of my Sundays a happy distraction from what hasn’t been an easy year or years. Watching you play has energized me to a happy place, and I’ll always BELIEVE DAT you’re a team of good men, win or lose. I’m grateful you’ve made it as far as you have. You’ve been the joy of Sunday’s for much of my family and I, and I hope you feel the pride of the whole city behind you, my dog Monty, and me. See you next season.
Writing is my two-way radio, particularly since I spend so much time in solitude, which really depresses me only four to five times a year. A very specific void opens up and I know I need to see and visit with people who find the same things as funny as I do.
Otherwise, Monty and my parents and staying up late drawing or reading or writing have taken up a lot of my life. It’s been a hard but good life, and I imagine all the time what it will be like when I’m not sick anymore. I watch people working their everyday jobs, knowing they can’t know how lucky they are to do such mundane things without a second thought. That’s the typical way, and it will be a really incredible moment when I shower and don’t give two thoughts hesitation until I’m applying face lotion later and realize I didn’t have to plan that shower I just took.
But back to my two-way radio. Something happened. I’m on one channel and the world is on another. Somehow the signals became switched over the last few months, maybe years…I’ve lost count. I only know it was much easier once, this writing. Suddenly the process became very arduous and tied into webs. I still write everyday. I still turn to it. But I know I’ve grown afraid, I’ve let the voices inside get to me and keep me from sharing what I’ve written out of fear. That’s pretty foolish Mary. Thanks, I know. Which is why whether this post is good or bad, I apologize but I have to post it. It’s the only way I know how to hush those voices and thoughts. It’s the only way to grasp some kind of momentum, move on, and not lose my inner voice completely and my ability to hear the world through my radio. I haven’t stopped listening, it’s just been harder and harder to make sense of the output.
This is halfway because my cognitive function has felt toyed with. I lack mental clarity and trust and staying on route. My thoughts meander and pivot like goldfish in the back of my head and it’s impossible to catch one before they’re swimming in a whole other direction. It’s so easy to convince myself there’s too much at stake (really there’s kind of barely anything) and throw in the towel when I’m inches from the finish line.
I’m going to try hard to stop doing that. I’m going to go ahead and hang my dirty laundry out to dry, that way it can’t convince me in some corner of my mind that a fleeting thought should make up such a definite decision.
I can barely keep my eyes open. But I promised myself I would finish this, because I know I’m the only one who can get myself out of this sticky web that has me all balled up and disoriented.
It’s been a terrible a day. I’ve been crashed for weeks and weak as hell. I finally regained a little strength today, but when trying to fill two prescriptions at my old stomping ground, Walgreens, one was denied by insurance and the other has some manufacturers shortage. They told me to try calling back in a month to see if they would have it then. A month? It’s not socks lady, it’s medicine I need and take everyday! All my energy and emotion went to trying to fill this simple prescription, and my poor mom was back at putting out fires all day while still trying to recover from the Holidays herself. Matt has been a lifesaver with his reassuring voice and enthusiasm to help–an encouraging voice that we’ll get what is needed. I’m lucky to have good people in my life. I know it.
I have enough medicine to last me until tomorrow. If Walgreens doesn’t come through tomorrow, I don’t know what I’ll do. Figure it out like we always do, but I hate how much of such precious, limited energy I have all goes to figuring out how to fill a prescription that life is not doable without. This medicine controls my extreme restless legs/body and the skin crawling I get on top of it. It is pure hell trying to exist without some type of medicine to quell the feeling. It’s also hell that suddenly you call to refill what should be easy and are told there’s a manufacturers backorder and “good luck finding that.” It’s a complicated world, and every month is like this. Never is it a simple refill and go.
Still, I’m lucky I don’t have to handle all of this on my own. But it’s just too much some days, and all you can do is let out a good cry and remind yourself it will be OK. It’s just overwhelming, and this is one aspect of navigating an orphaned disease I wish the NIH could see. This tiny aspect of it–nothing compared to what others endure– and still the amount of time and space and energy it takes up in my tiny little life is uncanny. You’re left to fight battles left and right, but you’re not left with any energy to do it. If you’re lucky you’ve got someone to help you–but that is pure luck it seems.
Anyway, this was supposed to be a post that explored my response and take-aways to the NIH reply to our petition. But I’ve been trying to finish the last 10% of that blog for a month now. Everything is slowed down–mind, body, talking for gosh sakes. I will finish it, but first I have to find a way to get the medicine I need, then I need to slow down long enough to get my radio back on the same channel as the rest of the world. It’d be easier if I had some strength and didn’t feel weak as feather carrying a stone of a body, but I imagine that will come back to me in time.
I can’t stay awake anymore. But I didn’t want to let the voice, the hindrances win. The web tangle me up to where I couldn’t emerge whole. I’m the only one who can get myself out of this writing mess, so I’m hellbent on doing it. I ask you to wish me luck that tomorrow goes better, and I can concentrate on ideas and not convincing Walgreens reps that I’m no drug addict and would just like my medicine so I’m not living in misery, with a cherry on top, please.
OK, I’m sorry this isn’t more substantive. It’s just the first step through this damn ring of fire keeping me from doing what I know I’m capable of, what I feel called to, but I’ve somehow been convinced there’s not any value in. I’m breaking through the wall, if only to remind myself that fear gets me no where and if I could just trust myself like 10% more, I’d probably feel better about everything.
At any rate, thank you to those who’ve stayed with me through these writing ups and downs. I know there’s been a lot of downs, but I believe there will be more ups to come.
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.
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.
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,
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.
Walter J. Koroshetz, M.D.
Chair, Trans-NIH ME/CFS Research Working Group
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.
Sometimes life is so tragically hilarious that you could laugh or you could cry, but when you’ve shed enough tears to fill a pool, laughter is nearly the preferable way to go. If you can swing it.
I’m laughing because it’s New Years Eve, I’m in 5 day old pajamas and have only left the house by being driven by my parents to urgent care over the weekend and for x-rays, blood work and an ultra sound at the clinic today. Now I’m at home, listening to the coonass neighbors set off what sound like homemade bombs, Monty is never more than a foot away from me as he’s afraid of what I can only assume he must assume are the end times out there…
OK so then on top of this somewhat sad, funny setup, there I was watching The Antique Roadshow with my parents. Marc was already half-asleep in his chair. Well, I’m 34, I’m going to kiss Monty for NYE, and it’s anyones guess how late I’ll stay up. Then around 10ish my mom told me she was exhausted and going to bed. I’m at home now, attempting to write, which I’m deathly afraid I’ve forgotten how to do so excuse the caca that may emerge through the next few posts while Stella gets her groove back. The point is, I’m 34 and peeing every 20 minutes and I doubt I’ll make it to midnight. Now that’s comedy! At least we’re not watching My 600 Pound Life…that show can really get you down.
Anyway, I wonder how many other asses were kicked besides mine due to the intrinsic chaos attached to the Holidays. Because you can considered mine booted. Crashed and burned. And it’s raining outside! Some easy reasons to be blue, but rain is actually a huge part of why I love living in the south. My dad always said rain was a sign of balance–and on every occasion some small shower falls from the sky and comforts us all in some way that he’s still there…still looking out for things, even when they’re a catastrophe. Maybe this year it means the scales will tip a little further in the direction of help for the MECFS demographic–help even the ‘playing field’ when it comes to our efforts for change. Maybe I’m just a hopeless romantic. But hey, he’s helped out before.
The biggest bummer besides my body failing is that cognitively it’s been spaghetti brain all over the place a lot of this year. Especially the last 6 months. And it seems like the brain needs rest the same way a physical crash requires one. But writing is my outlet. I feel angst when I don’t write here. Doing it forces me to remember, be patient and grateful and most of all, to help restore my hope. It’s aways been something I can do despite being sick. So to not feel like I can creates a void among voids I’m already fighting. It’s hard to know when to just stop and take a break, or when to just keep writing through it, even when it seems to kind of…suck.
I write through a lot of it and post very little. I tell myself I’ll stop doing that because that fear of bad writing can really tailspin into no writing, and that’s the worst you can do. Inspiration can hit you in the middle of doing what feels like crappy, worthless work. And it seems less likely to be struck by anything meaningful when you’ve turned your back on trying because you’re afraid it will be bad. Sometimes it will be…I think you just write through it. Or you become a lowly loser blogger whose only readers consist of your sister and your aunt Amy. They were the first followers of this blog :)
Writing and thinking and speaking coherently have become so much harder this year. Half of it do to the meds I have to take to control the RLS and skin crawling, where life is just not possible without the treatment. When I picture my brain I see a six lane highway with bumper to bumper traffic that spans for miles with no way to exit besides getting out and walking. It’s so cluttered up there, forgetful and all out-of-order. Luckily it is the pace of writing, its’ patient ability to wait for me to think of words, that allows me to continue. Unluckily, it takes me so much longer to write than before, and by the end I can’t gouge if it makes any sense so I skip it and say I’ll come back to post later. Guess who doesn’t post later? So there’s about six….thousand… of those suckers just open on my computer, waiting to go somewhere. I just need to stop being a pansy and post. What’s with this damned hesitation? Good grief.
It hit me this year how hard it is to be around people who aren’t sick simply because it brought me up close to what a typical life looks like. I tend to forget how dysfunctional mine is. I watched as they would make breakfast and listen to loud music in the morning and carry babies and take showers like it was nothing. Of course it’s nothing. That’s what a healthy life permits you, and so it can be a bitter reminder of the things that are marathons for you, when you see just how easy they could be thoughtless tasks. But this is why sickness is always encouraging consciousness if you’re to live with it and find peace at the same time.
If you kept a list of “can no longer do’s’, you’d run out of paper and possibly lose your mind. In day-to-day life, you have this *creative challenge* we’ll call it, to just hang tightly on to what you can do, what you have, and squeeze the hell out of that lemon for all the juice inside it. Years ago I had to learn to start counting up, not down, in my everyday life in order to keep going. To find momentum, purpose, laughter, creativity–all that cheesy crap they write on picture frames at TJ Maxx–you’ve got to find your small pieces of joy and feed them until they start to return the favor tenfold.
It would be easy enough to be depressed on a day like today. It’s New Years Eve, and I know my friends are picking out fancy outfits for the night. They’ll drink and dance and party. Since we spent most of today at the doctor getting x-rays and ultra sounds and blood work after a bladder infection seemed to move to my kidneys, I think it’s safe to say there’s no partying for my NYE. But that’s OK. I mean it sucks, it’s OK to say it sucks, but it’s OK too. I mean here I am talking about my bladder to strangers on the internet! Should I get into my bowels? I won’t, they’re fine.
I really wanted to write tonight because I was thinking of all the people in similar situations as me–particularly all the sickley’s out there. I just wanted them to know that if you’re feeling low, well 1, that’s understandable. But 2. try hard to remember you’re not alone in all this, even if you’re by yourself. I know it’s difficult to take that seriously. But I also know how isolated it can feel when you turn on the TV and see two million people partying in Time Square while your miles away in PJ’s, in bed, etc. I hope you remember how many others of us there are, going through the same or similar experience, missing out on overhyped parties and whatever else is happening out there.
We’re still connected to each other in some way, and I don’t know how to convey it exactly in a way that really eases the loneliness that nights like these tend to reinforce–but the numbers don’t lie. There are millions of us, all in similar boats. And we don’t have to know each other deeply to know we’re out here. I’m one right here!
Let’s also not forget, we tend to imagine these elaborate parties with tigers on leashes and super models serving champagne on a rooftop with views of NYC, but they’re never as good in reality as they are in our minds. Tonight is just a change of numbers. Tomorrow will be back to normal.
The difference is that it’s 2019, and I plan on working so hard and creatively with my efforts in getting the NIH to see what they don’t appear capable of seeing. -We’ve already made a breakthrough, (more on that next time) and established an important connection. Was their response satisfactory? Haha, NO. Not by a long shot. But this was just one of the first steps, and there will be many more to come.
I would ask anyone at midnight to just stop and focus their attention for even a few seconds on major change for MECFS. Think about the things you want to happen, even if it seems obvious, and send it out into the world. Maybe the desperate changes we need will converge somewhere in the universe, meet over some remote place above the Atlantic Ocean and help make things work in our favor. I believe we can do what we’ve set out for. We just have to continue to help each other, support and carry one another through when the work is too heavy, and never lose hope that we will get through to the right people and that the work we’re doing is crucial. We will attain the change we need, I know it. At midnight that’s what I’ll be thinking of, and I hope you’ll join me.
I truly hope everyone had a happy holiday, sick, well, or in-between. I’ll see you tonight in the stars somewhere. I wish you all the best, and if you’re like me and you’re going to kiss your dog at midnight, maybe also make your wish, kiss your fingertips, and blow it out into the cosmos. I believe in the power of energy if nothing else. Whatever you do, don’t lose hope, as impossible as that can feel. Try to imagine how amazing it will feel when our efforts come to fruition. The advocacy world has made some major progress this year. Now, we just need to get the government to follow our lead :) easy peasy! I think 2019 will have much bigger things to come, so hang in there with me. I need ya.
Health, Happiness and HapPEE New Years!
**I promise this is the last blog that’s so long. I’m fixing it, ok? My brain is thinking in non-sequiturs. I’ll fix it.