Life and Death – FibroM.E.-Awesome

A Little Older Now

Published on April 6, 2023April 13, 2023 by Mary Gelpi13 Comments

A little while ago I was haphazardly complaining that I couldn’t believe how old, number-wise, I was. I didn’t really feel older. I still feel like an idiot kid figuring it out litrally (said with accent) every day. My cousin Brenda piped in with something that should have been obvious. “We’re all getting older Mary. You’re not suddenly older than us!”

What a self-evident, seemingly obvious take on things. I had it somehow in my mind that only I was getting older, while everyone else stayed the same age. She was right, we were all looking the same, while somehow kids were growing and seasons continued to change and evidence of time past surrounded us wherever we looked. I guess that’s all to say, It’s been a while. I’ve missed you. How’s things?

I had no idea how to re-enter this little world I created so long ago and then took a sudden hiatus from for what, two years? Was I doing other important things? You could say that. (I wasn’t.) I was just living, plain and simple. The way people in picture frames and advertisements live. In some sacred moment— without a history of the last 10 years. No memory of being consumed by illness. Nothing lost. All I could ever need, I have. I’m just a smiling girl in a picture, no past—inhabiting ‘the eternal present’ as Tolle calls it. I erase it all.

The taking. Of friendships, relationships, autonomy and money and time. The leaking. Into every corner of my foolish little life. The waiting. In line at the pharmacy. In the first room at the doctor. The exam room at the doctor. On hold with the pharmacy. On hold with the insurance. On hold with the doctors office. And the loss, naturally. The loss of self to something I thought stronger than me. Of livelihood. Of growing into something impressive. Of opportunity. Of ways to make a mother proud.

There had to be a reconciliation with all of all that. And in truth, I might say that every day is exactly that. An eternal letting go, surrendering to what was and is real, all the while continuing to move forward. Embracing what is real and true by the ever changing second. Not to grieve the same things twice. In order for Life to overcome loss. To give what used to be taken. To have gratitude while I wait, because hey, at least I’m able to be here in the supermarket and wait on two feet. Not for long before it hurts, but I am somewhere. I am not a living couch.

This all points to my life now and how things have changed. When I look back at the move to Colorado, I see just how much of an insane shit show it was. We left with high hopes that Rocky Mountain air and crisp clear Colorado water could do nothing but help me. I’d have to feel better here, right? Wrong. It’s all too hilarious that I moved back into my childhood home, but moved into the basement. (It’s a finished walk-out OK!?) Every 36-year-olds dream. I did my best.

Looking back now from a stage of much higher functionality and a new, certain “availability” of health, I see how bad it was. My memory fills with images of me crawling up the stairs to the kitchen, on four legs like a monkey, because I was too weak to walk on two feet. Dizzily stumbling to the bathroom every morning, squinting in pain. Clothes all over the floor and Monty’s chew toys, because there was no energy in me available to do unnecessary things. Multiple Zooms with multiple doctors—zero real answers or treatments. A constant shortness of breath. A darkness under the eyes.

I rarely, ever left the house. People thought it was because of Covid. For me it was just life. For so many with chronic illness, quarantine was simply life as they already knew it. Covid was nothing but an interesting reminder that other people were also at home on a Tuesday afternoon. (Plus a whole lot more. We’ll get there.)

The truth is, I am very, very lucky. I write that with a strong knowing that it’s not even fair, what I’ve been given, because it’s what everyone should be given: a knowing, caring doctor. An MECFS specialist who treats exactly and only that. Proper healthcare. I can hardly convey how stark the contrast—visiting 6 different doctors in New Orleans to address eight different issues and dispense twenty medications, compared to one, bright, excessively knowledgable doctor, in charge of all my medicine, who knows so much more than me about this disease—which, it should be said, is how it should be. The patient shouldn’t have to wonder if the doctor has ever heard of her disease, let alone whether she says its name out loud. That is, if she even mentions it out loud at all. It’s always a gamble. Tell them or don’t tell them? Don’t. Unless they say it first.

Imagine. This will be a time in history, one day, when we look back and say “It was a gamble to even say out loud the name of your disease in the presence of a doctor. It meant they likely wouldn’t believe you. Which meant they couldn’t or wouldn’t help you. Which meant, well, here’s the number to a therapist, in the end. One day in the future, we will look back at this reality in awe. Shock. Shame.

With a lot of luck, but mostly hard work and some gambling on the part of my sister, she was able to arrange an appointment with Dr. Yellman, of the Bateman Horne Center in Salt Lake City. It’s only four hours from here, so even when I have to go, it’s a beautiful drive. I think most ME patients would be eager, health-willing, to drive for days to see this kind of doctor. Like I said, I’m lucky as hell that I got in, and I am far from the most deserving. I’m constantly grateful to have him on board and also a bit woefully heartbroken that so many sick people don’t have this access. To those I say, please hang in there. We will get there. There’s work to do. There’s so much work to do. But we can do it.

I should perhaps clarify that no, I am nowhere near perfect health. What changed is that my specialist is treating all kinds of things that a regular PC doc wouldn’t. Medicine like Cromolyn for Mast Cell Activation Syndrome, Pyrodistigmine for POTS, electrolytes and compression leggings for all parts dysautonomia. (That last bit is the easiest change you can make right now. I’ll post the leggings I use. That and at least one liquid IV a day.)

I still crash. Push and crash as though I haven’t learned this lesson a thousand times. But my crashes are less extreme, and a lot less long. This last month reminded me I am very very far from invincible, and it still doesn’t take so much for me to overdo it. I still need to be cautious with myself, but it’s difficult when I feel energy not to want to run outside and jump on the roof of my Toyota Camry and, I don’t know, sing Taylor Swift at the top of my lungs. Why? Because I can is all. That’s it really.

There is plenty more to say, about everything. We’ve got two years to account for! But mostly, I’m still me.

I hate to say it, don’t know how to say it, except to say it. I finally lost Monty, which I came close to thinking would never really happen. It was exactly a year ago next weekend. I’ve so much still to write about it, and him, and the whole thing. But the most I can say for now is that yes, it was very hard. But I realized that my fear of losing him was actually worse than the loss itself. When the time comes, you know. When you’re close with another soul like that, you know. Monty chose when and where, and I was simply there to pet his velvet ears and take in his smell one last time. OK, so I’m crying now. That happens sometimes and it’s OK. I think how wasteful all that fear of losing him was, when he was panting directly in my face!

Dogs are incredible teachers. Monty was next-level, and what he gave to me, in nearly every category of life, was precious. I really cannot believe how lucky I was to have such a dog as my own. It was a gift and a privilege to have him. I will never forget it.

It’s been a crazy two years. But I’m still here. Still Surviving. And Monty? Well, he’ll live forever ;)

Health, Happiness, Hellos & Goodbyes

The Opposite of Boredom

Published on May 27, 2014 by Mary Gelpi3 Comments

A few noteworthy things of late.

I’m completely lost in Walker Percy’s The Moviegoer. I began reading it Sunday and now I find myself attempting to read only small bits at a time because I’m already dreading it being over. It’s such a good read. The protagonist Jack really resonates with me but also Percy is such a creative and dead-on writer of things large and small. I admit reading his words make me feel like I could never write anything of worth if I tried for it my entire life. But on other pages his complex ideas play out so simply, his writing so accessible that it gives the assuring impression that anyone could do it. The story takes place in New Orleans mostly, among other Louisiana Parishes and the Mississippi coast. I love stories set here, not for reasons of pride but for how perfectly the landscape plays into the story, picking up where plot leaves off. Something huge would inevitably be lost were it to be told from Ohio…or Michigan. All parts of it from the dress, to the houses, to the unnerving racial tension are all intrinsically Southern, and you find yourself loving it whether you hate it or not. Also of note, Percy lived in Covington. He used to drive the bridge to New Orleans. I guess it’s encouraging to know something so inspiring came out of this little town that for so long I hated. Speaking of the bridge..

I had another moment of coherence. This time around mile marker 11. Monty and I were driving home once again, New Orleans to the Northshore, last Monday evening. It was a pretty nondescript Monday, cloudless with little traffic. But my thoughts were floating through me with the rhythm of the bumps per usual. Then I did this thing which I do a lot. A small amount of congested traffic formed from some kind of road repair, and as I slowed my car to a near-halt, I felt myself bracing for impact. Not from me but from a car behind. (No car in particular, I do this no matter who’s behind me) Then I imagined the loud crashing sound it would make and my airbags inflating. Then the last part which is usually the most unnerving for me, I saw my car crashing through the concrete barrier to my right, and my feeble Toyota corolla with Monty and me inside it, falling slow motion into the water. Down, down we’d go.

like this. but less black and whiteness. — Like this. But less black and whiteness.

And usually the thought doesn’t end with a rescue. Usually it ends with me shuttering at the idea of the lights going out on my life so fast, and then me being jerked back to reality, convincing myself someway that death is nothing to think about. As though I’ll never die! But last Monday was different. I had the thought, I braced for impact, I saw the vision of my falling car. And then out of nowhere…tranquility. My mind felt placid. I may have even smiled. I thought how weightless that moment must be when you finally let go. The grand transition. Finally releasing something you’ve held so tightly onto, whether it was good to you or not. The surrender. The relief! It finally occurred to me that only being lost so deeply in the world garners that sort of fear about death. If we could interview those who have “passed on” (as I hear older religious folk say) I think they’d say it wasn’t that scary. Nothing compared to the rest of their life on earth scared to death imagining it! I’d love to get just one interview. It’s like I know all these dead people and none of them will give me the dirt.

Anyway, I can’t explain how reassuring that moment was on the bridge. I remember in California over a year ago, I was sicker than I’d ever been to the point I actually thought I might be dying. And I hated the idea. I was so overwhelmed by that possibility that often it brought me to tears and I’d have to excuse myself and physically catch my breath. In theory it should have been almost a relief to think about–an end to suffering. But I didn’t want to die. And I certainly didn’t want my last days on earth to be like the ones I was having there. Closed up indoors, lifeless, feeling very alone. It’s just interesting to me that now that I’ve really been living these last few months, and dare I say it, even–happy–my fear of death has lessened. I’ve enjoyed the park and the pool with Monty in the sun. I’ve gone to dinner parties. I’ve said yes to things that in my sick past were a big fat no. I’ve spent quality time with people I love, not doing a whole lot of anything at all but talking about life and people and laughing really, really hard. And there on the bridge, for maybe no more than a second, I didn’t fear death. I felt curious and interested. But I wasn’t tense bracing for impact. I was smiling at how much fun I’ve been having and how at ease with life I feel. You’d think that would make the idea of death more unnerving than ever, because it means an end to happy times. But the opposite occurred. From my perspective over the water, death was just another thing that happens. Maybe after all, it’s not that big a deal? Hah. That moment was the first I’ve had that it didn’t feel like this overwhelming weight baring that comes with the knowledge that one day we’re all going to die. And even though my normal angst about it has at least half returned, that moment has really stuck and it feels readily accessible still. There was something very casual about it, which made me trust it even more. Sometimes I find myself looking for grand answers, spectacles, formal explanations of life and existence..and this was not really that. It was a simple and tranquil instant of acceptance, and those are the moments that persist. I pet Monty’s velvet ears, turned up the music and into the distance we drove. That indistinct Monday turned out to be quite the evening as it were.

Besides my newfound excitement for death! (jk)… the Day Lily’s are back in bloom. I looked at all the colors sprouting up yesterday, noting that by nature’s calendar I’ve officially been in this house for one year. I remember writing about these flowers last year, excited for how life in the pool house might unfold. Funny I hardly remember what’s happened in the time since then. In some way the fact that nothing terrible stands out makes it safe to say it’s been a pretty decent year. I only know that being given the gift of “relative health” the last few months has truly been remarkable for me. I’ve been enjoying the hell out of so many moments– of friends and boys and late nights immensely–and I feel gratefulness overflowing in me. I don’t remember the last time I was bored. I’ve read and written and played Taylor Swift on my guitar ridiculously loud. When I’m sick I rest. When I have energy I go. But most notably is this gratitude and the awareness of this gratitude. It occurred to me recently that this is the opposite of boredom. When I feel gratitude I feel like I’m living with my eyes open. I’m often noticing things that were already there that I’d simply skipped over before. I like this feeling of being in touch with my aliveness, seeing the realm of possibility beyond personal limits, recognizing the awe-inspiring nature of everything alive. Maybe it’s why I love saving the frogs from the pool, or why I don’t get rid of the spider living in the corner of my bathroom. I don’t think you can be in tune to these truths and be also bored. Boredom uses a narrow vision, it sees life as something to happen for us and not from us. Even yesterday, which turned out to be a crash day spent in bed, I lost myself in the enjoyment of a book, completely grateful for the existence of novels and good authors. Then completely grateful for a nice house to read them in. I never got out of my pajamas or brushed my teeth. I didn’t exactly contribute to the world. And all the same, it was really a wonderful day. I know there was a recent time in my life when I wouldn’t have thought that to be so.

Health, Happiness, Opposites.

Questions Answered.

Published on April 21, 2014April 23, 2014 by Mary Gelpi7 Comments

Everything is weird. I’m still healthy. And that makes things weird. And also pretty great.

I’m enjoying the three-dimensionality of things. The multitudes of personalities I’m confronting. The sounds that one simply doesn’t here in a bed in Southern Louisiana. Everything is distinctly colorful. Of course the onslaught of spring and the prolific products of hers help. It’s a been a long time since my health has maintained in this way. I’m walking a thin internal line, trying not to delve too hard into the why but not altogether ignoring the possibility of its fleeting nature, just like the season. I’m simultaneously happy at this new disposition and also keeping a dark fear at bay. It could all end quickly– a few things. And being entirely reckless hasn’t served me in the past. So I’m keeping these things in mind of course. But trying not to fall down completely into the rabbit hole where incessant introspective thoughts about it all could trap you just as easy as any sickness could.

For the most part, it’s been fucking great. Sorry. F word only every now and then. But it really is nice being able to stand and walk without the typical interruptions and be social and see comedy and do what other young people are doing. I can’t deny I am simply just enjoying the hell out of all of it. Things feel carefree and almost weightless. Life outside of a window at my house, a window on my phone, is really pretty great. When I get worried about the future or have fear of losing it, my mom tells me the same thing; detach from the outcome. And it’s so, so true.

I’m thinking of so many things these days. I’m still trying to put it together. What purpose will I serve with this newfound health? What did I fulfill in sickness? How to matter and find meaning in all of it– the big stuff and the little stuff and the small bits in-between. I’ve been thinking in questions today. I’m going to write them out with my best shot at answers because it’s just the current of my thoughts lately and I’m not going to swim upstream.

What do you contribute the newfound health to?

It could be the physical therapy for my neck which has lessened that pain load considerably. Could be the prescription switch to Trazadone that has me actually sleeping through the night–never mind the night sweats. Another prescription switch from Neurontin to Lyrica seems to help with pain management in general and maybe the increase in energy. Also it’s Spring and I swear to God I’m always at least a little improved in nice weather and my migraines are less frequent. Also divine intervention. I don’t know. Maybe a little of it all.

What happened to sewing, weren’t you into sewing for a while?

Yeah, I was. And I got really excited about some sewing projects. I sat at the Singer Simple 3116 for hours and taught myself the ins and outs of it. I got carried away and excited with ideas. Then I began, and I jammed the bobbin. THAT DAMN BOBBIN. I took the bobbin apart, unjammed it, and put it back together. And now the bobbin is failing me hardcore. I need bobbin help. Anyone? Still, I’d like to get back to some sewing projects. I find it relaxing and I like learning skills that seem to be fading from my generation.

What’s Monty up to?

You know, same ol…

Let’s talk about tea now.

Drinking this new acai/blueberry/pomegranate mix on the reg. It’s really good. Has there yet been a decision on the universal pronunciation of acai berry? I hear a mix around town. Let a sister know.

How’s the writing going?

I find a lot of reasons not to, but when I sit down and do it I like what comes out. Most of it’s been happening pen-to-page so I’ve been using up my notebooks, which is good because I have a lot. I’ve been on the lookout for a typewriter, but maybe that’s just another fantasy in the works. This thought that some instrument will encourage more writing instead of the truth which is that real writing just requires sitting down and doing that shit. I’m working on that.

Anything else while you’re out here in Neverland typing to yourself?

Yeah I’m reading like 4 books right now and 1 book of poetry. I don’t think this is how optimal reading was designed, but I find my head a little scattered lately. I’m almost finished with The Rosie Project–really funny, really good. Trying to push through Dance Dance Dance (slower than expected). One Dead in Attic is an easy quick read but dismal of course, you know, post-Katrina stuff. The Four Agreements is sometimes rudimentary in comparison to Tolle and Zukav and Nepo, but almost identical in the message. It’s got good stuff. New American Poetry which is proving what I feared–that I don’t really understand how to read poetry. Do you keep reading until you get it? I guess that’s all in the way of books.

And everything else.

For now the goal is to truly enjoy this time of health, appreciating every second where taking a deep breath is easy and sitting isn’t my only option. I’ve held the door for people these last few weeks. I held the door! These very normal things…they’re feeling very good. Clearly I’ve had a lot of doors held for me in my small life, and it feels nice to return the favor.

One last thing:

I saw The Grand Budapest Hotel. I really liked it. Monsieur Gustave..he sticks with you. I’m still stuck on Moonrise Kingdom though. See them both. Make a whole night of it.

Health, Happiness, HEALTH, HAPPINESS!

Don’t Forget to Do Nothing.

Published on April 4, 2014April 8, 2014 by Mary Gelpi4 Comments

Two things happen when I start feeling better: My house gets really, down-to-the-baseboards clean, and my writing takes a hiatus.

For whatever reason, the last two weeks have been comparatively healthy ones. My energy is up and my pain level medium and manageable. Like most people with the illness, I couldn’t tell you exactly what’s changed. And if the past is any indicator, I could just as easily land on my ass tomorrow and be in a bed for a week. Of course, I’m not expecting that, and I’m enjoying the hell out of the newfound energy. My mom says it’s obvious when you start feeling better because suddenly you see all these little things that need tending too that you hadn’t noticed before. I’m sure it’s a defense mechanism of the body. You can’t exactly worry about dusty baseboards when your arms are too weak for teeth-brushing.

As I’ve enjoyed this accelerated momentum and stamina, I noticed I was forgetting to write. It’s easy to see why–often the trigger for me to write is either some sort of pain (physical or mental) that leads to enlightenment or offers some lesson, or it’s diverted attention to some very small detail that I usually notice when the pace of my life is slow, ie when I’m sick. It’s not that the requirement for noticing these deeper observations is sickness, it’s that when I am in fact sick, everything slows down. Out of necessity, I don’t really have a choice. The tasks on a to-do list, the chores, the logistics of physical life are put on hold while whatever broken part of me is on the mend. When I’m in this state, it’s almost as if some parts of my brain are turned up while others turn down. Like the static and noise of everyday life are quieted, and in that absence come the more powerful details and ideas. In other words, I’m tuned in to a different frequency. I’m looking for and sometimes finding answers and meaning maybe because it’s a way to feel alive and happy while waiting on my physical body to “catch up”. But I’ve discovered something in the last two weeks that now I’ll be paying attention to:

I shouldn’t have to be sick in order to be tuned in to that frequency.

The modern world is fast. The to-do lists are bottomless. And even when we die there will be unread emails in our in-boxes. This is why that conscious awareness I have while I am sick, the kind that the mystics speak of, will have to be a choice on my part. (If I am to be well) If the last three years have shown me anything, it’s been the importance of that tuned in consciousness. Of living my life awake, not numbed or on autopilot. These things are easy to forget. Hell, I’ve been healthy a week and half and seemed to have forgotten just as quickly. But it certainly makes me examine the thought that all sick people have– could this be the reason I was sick at all? It’s not a theory anymore, I know with absolute certainty that without illness me and my life would be very, very different. I was a type-A personality; A competitive gymnast to whom school and other things came easy. Would I have ever slowed down? Would I ever have found Wisdom in the Day Lillies or saved the all those baby frogs from the pool everyday while examining the largeness and smallness of life that surrounds me? Would I stop to photograph plants like this just because it struck me as beautiful and that was reason enough for pause?

Well, probably not. And it’s not to say that me noticing the beauty of flowers or the fragility of life is so important or better than what I’d be doing otherwise. But I have to trust in the specific experience I’m having. Things could have been different, but of course, we can’t re-write our pasts. I’ll never know who I would’ve been. On bad days (on unconscious moments) I fantasize that I would have been better. That my life would be a glamorous one and there would be little suffering and I would be the president blah blah blah. But that kind of thinking is mostly ego of course, and all fantasy. Projecting that all my happiness lies somewhere over there, if only things were different is textbook ego. And all that contributes to is a lack of attention to the present. It takes away my power and ability to see and navigate where I am with what I have. If our power is in the present and it’s indeed all we have like Tolle and his peers suggest, then the “if only” thought doesn’t get us very far. It’s rare that we stop to consider that without illness or without our painful experience, we might have been someone worse. Someone very unlike who we are today. Now when I consider why maybe this illness is a part of my path, it makes a little more sense. It’s what I needed to become awake. And clearly I’m still trying to get there.

Of course maybe you’re a student of the chaos theory, in which case all of this is just randomness unraveling in a one-time deal called life on earth. Some people are sick and other people aren’t. Life is good or life is bad and then you die. I’ve considered this hypothesis but it just doesn’t work for me. It doesn’t further my vision or deepen my understanding of life and its complexity. In fact it seems to cut off at the very best part–the why. That’s a question I wonder if I’ll ever stop asking. Most of this experience only begins to make sense when I get down to details like a scientist would, and so that’s where my understanding is. Or where it begins. I am still searching for more answers, for more mentors and schools of thought to point me toward them. But I find it hard to accept a conclusion that appears to stop at the tip of the iceberg in terms of depth and understanding of all the elements of life that we cannot see. Love. Suffering. Belief. Surrender. Grief. Grace. Of course maybe I’m wrong in which case we’re all going to die anyway and I’ll never see you again. So, ya know, whateva.

There was only one day in the last week where I felt bad enough to spend the afternoon horizontal. As I write that I’m containing my excitement at how “good” I’ve felt that only one day this week I was on supine. Anyway, that morning I’d caught the eye of a tree frog on my kitchen door. For whatever reason I watched him a while and then took a picture. On my downtime that afternoon I kept thinking of that frog and the surplus of details on his little tiny body. So I wrote- a poem- for the next two hours. I don’t know whether it was good or not and maybe that doesn’t matter. But I do know for whatever reason, it had me feeling good to write it. I noticed then too, I’ve got to slow down. Even when I feel good, let some tasks lie. Let some calls go unanswered. Sit in stillness and quiet and let the questions come. Even if for ten minutes, I always feel better. Lately I’ve caught myself stuck on the guide channel of my TV, incessantly searching for a show that I feel will entertain or gratify me. I play one show in the window but continue to seek the magic program, while ads about Lipitor blare at unconscionable volumes. Suddenly, I’ll hit the power button, and the subsequent silence feels so. incredibly. good. That was the program I was looking for; silence! Life is noisy, and fast, and always non-stop. Sometimes it’s OK to stop and do nothing. Notice what happens in the stillness. It’s as if a whole other world exists right beyond the busy.

Health, Happiness, and Something Beyond the Nothing.

Word of the Day.

Published on March 22, 2014 by Mary Gelpi5 Comments

I Wanna Get Better

Published on February 27, 2014March 7, 2014 by Mary Gelpi37 Comments

This strange thing keeps happening. This clear salty liquid keeps filling up in my eyes and overflowing down my face. I’ll feel a little overwhelmed and then a sense of loss, like I’m mourning someone. The liquid is an endless spring. I imagine I’ll run out, but I don’t. I have to drink more just to supplement all that salt I’m losing! It’s pretty annoying. I’d like it to stop.

The truth is I become a fragile emotional feather when I’m sick without relief. Gradually, after day and night and day of unrelenting sickness, it just gets to you. It starts to feel like dying more than living. I know that’s a heavy statement, and I use the verb feel very specifically. I am very much alive. Although it does beg the question. At what point do we say someone is “dying?” When their suffering outweighs their relief? That’s another question another day. I am for whatever reason, very alive, although I feel very dead. But dead people don’t cry so I think I can rule that out.

The real reason it’s been so hard recently is that being sick is absolutely and utterly exhausting. It’s overwhelming. And you know what I fantasize about? Being one of the people in my life right now that gets to offer help and suggest improvements and do random kind things. I dream of just being an average person in the functioning world. If you are that person, in anyones life, treasure it. It’s truly a privilege to be able to give to others. I might not have understood that had I never gotten sick. I want to give instead of take take take all the time. I’m tired of relying on help from others and constantly showing gratitude or kissing ass because I’m often helpless, unreliable, or burdensome. I’m tired of being high maintenance. I’m tired of all the pills I take, that work about half the time. Sometimes my stomach turns at the thought of them. I’m tired of being a bad friend in terms of what I am able to offer. I’m tired of what I am made to consider my “social life.” I’m tired of calling in sick to doctor appointments. Of seeing one or two hours of sunlight on bad days. I’m tired of my nightmares and high anxiety dreams every night. You’d think such a weighed down life would find respite in the dreamworld, but nope!! I’m tired of being 29 and relying on my parents as much as I do. Tired of feeling like I have things to offer the world but am too sick and small to carry them out. I couldn’t even hold a part-time job right now. And I’d actually love to. I’m tired of the answer being that there is no answer–there is no cure. I’m tired of being tired. And I know that those I rely on get tired of it too. The effects of all this go beyond me.

I don’t believe in whining and complaining and lamenting about life. Going on that way doesn’t really move us forward. But at the same time, there is pain here, underneath the pain, and if I don’t let it out I fear it will grow and take over my already sick insides. So I have to release it. I thought maybe if I write about it, these episodes of fluid filling up my eyes and clouding my vision and streaming down my face will cease. In other words, I want to stop crying at dog food commercials.

I am someone who loves solitude, thrives off of it even. But lately it feels more like loneliness, which is the third cousin twice removed from solitude. It’s a bad feeling. The difference between the two is that one is chosen and the other feels like the forced, only option. It’s hard to swallow when you’re constantly canceling on plans. And what you’re doing instead of being with friends, is being sick and alone at home. That’s not a fun thing to go through all the time. It wears on you.

I also laugh and cry at myself because I still want to see new places and try new things, meet new people and kiss cute boys. It’s like my heart doesn’t know I’m sick. It never gives up on the idea of new adventures. And then I wonder who would want to date me that has read this blog? I sort of leave my bleeding heart in the words here, and it’s a lot. It probably looks heavy. It can be, like anyones life. I feel vulnerable sometimes knowing that people have read such personal things about me without actually knowing me at all, but it’s part of the project. I told myself I’d always be honest, including when it got ugly. And I feel like it’d be dishonorable to discontinue that just for the sake of vanity. Still though, I worry and wonder if I’m cutting myself off from potential personal relationships by laying it all out there for the world to chew up. I worry where my life will go and how in Gods name I will move forward from here when some days I can’t leave the bed. But our boy Tolle is right: all we have is the present moment. All anyone can do is here and now. And if the present moment has me weak and in bed, (like it does right now) I can’t judge it or myself. This is where I am. I am doing what I’m capable of. Some days are going to look like this:

Not tired of this yet. — Not tired of this part.

I see where I’ve gone wrong. I’ve been judging the circumstances of my life which are beyond my control. I’ve been equating my broken body with who I am and my past as the teller of what my whole life will look like. Neither are true. But my circular thoughts would say otherwise, and sometimes we have to observe ourselves beyond our thoughts and feelings–as they are often flat-out wrong. At the same time, this life is just painful and hard sometimes, and I guess it’s OK to type that out loud. Just like I will type out loud when things change and life is better. Everything is temporary.

I also know that goals never hurt anybody. And I plan to make some more specific ones and at least feel like I am playing a part in my health and happiness. There are small things that I can do and/or avoid that can help. Well, that’s what my mom says, and she is usually right. She’s also planning to give up TV for Lent which sounds great to me. I have a few projects in mind in lieu of the crap we would’ve been watching. Creativity never hurt either. In fact, it’s often where we find relief we didn’t even know we needed.

Also, listen to this song. It’s called I Wanna Get Better by Bleachers and I know the title is almost annoyingly appropriate but it’s a really fun and happy jam. And you can’t have enough of those.

Health and Happiness and Sickness and Sadness :)

Some Posthumous Advice

Published on September 16, 2013 by Mary Gelpi10 Comments

A friend sent this to me recently and I really loved it. There’s something relieving and freeing about it and I think we could all use a laugh. Read it, you’ll smile.

Written by Caitlin Moran,
Published in The Times of London

My Posthumous Advice For My Daughter

My daughter is about to turn 13 and I’ve been smoking a lot recently, and so – in the wee small hours, when my lungs feel like there’s a small mouse inside them, scratching to get out – I’ve thought about writing her one of those “Now I’m Dead, Here’s My Letter Of Advice For You To Consult As You Continue Your Now Motherless Life” letters. Here’s the first draft. Might tweak it a bit later. When I’ve had another fag.

“Dear Lizzie. Hello, it’s Mummy. I’m dead. Sorry about that. I hope the funeral was good – did Daddy play Don’t Stop Me Now by Queen when my coffin went into the cremator? I hope everyone sang along and did air guitar, as I stipulated. And wore the stick-on Freddie Mercury moustaches, as I ordered in the ‘My Funeral Plan’ document that’s been pinned on the fridge since 2008, when I had that extremely self-pitying cold.

“Look – here are a couple of things I’ve learnt on the way that you might find useful in the coming years. It’s not an exhaustive list, but it’s a good start. Also, I’ve left you loads of life-insurance money – so go hog wild on eBay on those second-hand vintage dresses you like. You have always looked beautiful in them. You have always looked beautiful.

“The main thing is just to try to be nice. You already are – so lovely I burst, darling – and so I want you to hang on to that and never let it go. Keep slowly turning it up, like a dimmer switch, whenever you can. Just resolve to shine, constantly and steadily, like a warm lamp in the corner, and people will want to move towards you in order to feel happy, and to read things more clearly. You will be bright and constant in a world of dark and flux, and this will save you the anxiety of other, ultimately less satisfying things like ‘being cool’, ‘being more successful than everyone else’ and ‘being very thin’.

“Second, always remember that, nine times out of ten, you probably aren’t having a full-on nervous breakdown – you just need a cup of tea and a biscuit. You’d be amazed how easily and repeatedly you can confuse the two. Get a big biscuit tin.

“Three – always pick up worms off the pavement and put them on the grass. They’re having a bad day, and they’re good for… the earth or something (ask Daddy more about this; am a bit sketchy).

“Four: choose your friends because you feel most like yourself around them, because the jokes are easy and you feel like you’re in your best outfit when you’re with them, even though you’re just in a T-shirt. Never love someone whom you think you need to mend – or who makes you feel like you should be mended. There are boys out there who look for shining girls; they will stand next to you and say quiet things in your ear that only you can hear and that will slowly drain the joy out of your heart. The books about vampires are true, baby. Drive a stake through their hearts and run away.

“Stay at peace with your body. While it’s healthy, never think of it as a problem or a failure. Pat your legs occasionally and thank them for being able to run. Put your hands on your belly and enjoy how soft and warm you are – marvel over the world turning over within, the brilliant meat clockwork, as I did when you were inside me and I dreamt of you every night.

“Whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

“This segues into the next tip: life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES. However awful, you can get through any experience if you imagine yourself, in the future, telling your friends about it as they scream, with increasing disbelief, ‘NO! NO!’ Even when Jesus was on the cross, I bet He was thinking, ‘When I rise in three days, the disciples aren’t going to believe this when I tell them about it.’

“Babyiest, see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes, talk to Daddy and Nancy about me every day and never, ever start smoking. It’s like buying a fun baby dragon that will grow and eventually burn down your f***ing house.

“Love, Mummy.”

You can see the original post on Caitlin’s blog at Brouhaha

Thank you Giselle for the read! And congrats to my sister Amelie, who is a new mother today. It’s a good day.

Health Happiness Moms

What To Say When Someone Has Died.

Published on July 25, 2013July 10, 2014 by Mary Gelpi25 Comments

It’s been one of those weeks. I realize the title of this post is a little dry, emotionless, business-like even. But I don’t mean it that way. It’s been something I’ve thought and written about before, and in the wake of tragedy the words have been busying my brain. (Hence me writing now, at 3:30 am)

A good friend of mine lost her love suddenly and tragically this week. I hardly knew him at all, but of course in the hazy aftermath of the realization that he’s gone, and the strong sadness I feel for my friend who lost him, we all can’t help that feeling that so often comes in death, sudden or not. He was too young. This wasn’t supposed to happen. Things like this happen to other people. Death is always a knock at someone else’s door. Rarely do we feel accepting when it knocks at our own. Or comes into our neighborhood anyway.

The worst of it is, there truly isn’t much to say in these situations. And as humans, as fixers and problem solvers, it leaves us all a little stumped. A little quiet. There are few words I can think to say to my friend who lost him. Accept to hold on. That we as friends will hold her hand through it. That it will be OK. But first it will be hard and trying and she already knows that. One day at a time I would tell her. Some days, one hour.

As having lost a dad to cancer–a slower death, and a step dad to heart attack- an abrupt and unforseen death, I can say that both are difficult in different ways. At least in cancer you have time to prepare your affairs to some extent. I remember my father in his bathrobe, stick thin except for his swollen legs, on our back patio in the sun picking out music for his funeral. Laughing. Having a wonderful time. And that memory really sticks with me. It made me for once, unafraid of death. With my step-father it was different. No preparation, no time to really process it. He was here and then he wasn’t. Alive then in the ground. And what do you say to a mother who loses the second love of her life? How do you convince her there is design in all this? In the depth and solitude of grief, it’s hard to find reason in any of it. I know that feeling very well. And vague phrases about life and God and a reason for things, often fall flat. In the moment of pain, you just have to feel it and grieve it and keep on going. This is life after all. Peaks and valleys. And here I go with the vague phrases about our temporary existence. I’ll stop.

What I really want to say, is that I feel a real duty in being there for humankind when they lose someone they love. Mostly because I remember what helped and what didn’t in past times of tragedy. And also because there is no education in all this. No preparation in school for what to say and how to act when someone we know has died. And for anyone reading this, it may seem abundantly clear how lacking we are in this culture of behavior in death. There is, or maybe there should be etiquette in it. And so many lack it. I remember a family friend calling after we lost Roger. “What are you guys going to do?!?!” She pleaded to me on the phone. “And your sister is getting married next week!! In the same place your mother was married?! What will she do? Will your mother keep the house?!” I sat on the phone quiet, with tears running down my face. “I don’t know” is all I could say. And then, silence. Because I didn’t know. There was no way to know what to do next. Like I said, one day at a time. I just remember thinking that asking so many questions at that time wasn’t very helpful. In fact, it was the opposite. It’s not at all a time to start changing major life plans or rearranging things. Mourning is a process, and we have to be patient. The most helpful people in that time of crisis, were those who made small decisions for my mother, and didn’t bombard her with questions. A house in a time of grief is filled with flowers and food sent and relatives and friends. There are logistical things to take care of. There is damage control to do. And that’s what we all did for my mom, attempting not to bother her with details. I know this sounds perverted, but in some ways it can be a really beautiful time. It is when we truly acknowledge what it is to be human. We show our love without hesitation. We hold each other in tears and cry with them or let them cry on us. With this embrace we communicate that their pain is our pain too. In death we’re all the same.

I am a severe lover of animals and what they can teach human beings. (Far more than we give them credit for, I think) In grief I am reminded of elephants, one of the only other animals that are noted to grieve physically. They allow themselves to cry. They can be seen caressing the body after the animal has died, and different, distinct behavior can be observed of a matriarch even years after she loses a baby. Surviving elephants are known to stand together in their herd by the body of a fallen one in silence and stillness. Undoubtedly, they exude sorrow and seem to have some sort of formal grieving process, even beyond physical tears. Whenever I think of someone who will need help in their grief, I think of the elephants, standing by one another. They seem to convey to us, it’s not something to do alone.

I remember at the time of Rogers death, some of the most poignant times and helpful moments were those with no words at all. As each of my mothers four children and two step children made their way to our house, each hugged my mom, and both simply cried. I remember her weak voice, but her warm body when we hugged for a while. I live closest to home so I was the first kid to get there. Walking up our porch steps I thought “What will I say?” When we met eyes all she said was my name and then we hugged and cried together for what felt like a long time. But truly, that seemed the mose appropriate thing to do. The only thing to do. There were no words to say then. Helping someone grieve and truly being there for a fellow family member or friend is not so much a matter of having the right words to say but more a matter of simply being there. A warm body to embrace when the reality is too much. A literal shoulder to cry on. Someone who allows us our sadness.

For many people, the crying makes them uncomfortable, or the silence does. But crying is just a part of our grief and something we have to do. It’s a sign of us coming to terms with death. It will come out some way or another. We’re so quick to hush the griever and tell them its OK. But I think it’s acceptable to admit that things suck right now and the creator seems like an idiot and even crack jokes when the timing is right. I never cried or laughed so much as the week that Roger died. Which may sound morbid but it really wasn’t. Someone’s death brings on too the celebration of their life. It’s a time to tell stories and toast to their quarks and remember their beauty. Crying and laughter will ensue, sometimes in the same breath. And maybe even drunken debauchery. At any rate, I want to tell my friend, and anyone in the throes of grief, that it’s OK to cry and it’s OK to laugh and it’s OK to throw plates at the wall. Anything you feel is OK honestly, and you just need to do what feels right to you. There’s no right way to do it.

I didn’t have an answer for the woman on the phone with so many questions before. I couldn’t have known that a year later my mother would fall in love with the brother of my dads best friend and that even a tragic story like this would have its own happy ending. And maybe that was one of the biggest things Rogers death showed me; it was an end, but not the end. The story would go on. And that’s what I want my friend and anyone in the depths of despair to know. The only adage that gave me hope was remembering that This too shall pass. And it did.

Health, Happiness, Grief.

Tiny Little Worlds

Published on June 20, 2013June 21, 2013 by Mary Gelpi13 Comments

Most mornings start out the same for me. My eyes peel open slowly like velcro. My insides feel like they want out. Everything feels out of balance. I throw pills in my mouth, make my pot of coffee, let Monty out, and wait to feel human again. It isn’t the best…mornings have always been the hardest. But roughly an hour later, I start to feel better. The pain subsides. The disoriented, dizzy haze fades, and I sip coffee slowly and let my thoughts organize themselves. Once I’m human again, Monty starts making noises that imply if we don’t go outside and play in the pool soon he is going to explode or implode or something of that nature, so we go. He jumps in immediately, I sit in the water on the first step, and the day really starts. I’ve come to love our routine. It feels good spending so much time outside. Especially after a year of feeling so imprisoned to the indoors. Lately, the last step of morning involves saving frogs from the pool. They are really tiny; cute actually. Usually there are at least 5 of them. I try to keep them together, like they are some kind of family I’m rescuing and I don’t want the children to get separated. I have no idea why I feel this obligation to save them, but I do, and so I do.

They are such incredibly small animals, sometimes I just watch them. I feel bad when I find a floater who didn’t make it. I scan the sides of the pool twice where there are usually one or two and then the two round filters that catch the extra debris. I then usually carry them to the nearby ditch so they can hangout in natural water. Last night, Monty was muddy so I walked him out to the pool to clean him off, (this is now what we consider bath time) and when we approached I heard a loud splash of something that jumped in. When I looked in the filter, a huge frog was in there, spinning from the pump circulation. Certainly he would have died in there. The steps are too deep for them to jump back out. I took him from the filter and released him in the garden, and told Monty to be gentle as he sniffed up close after every hop he took. Then I played “Folsom Prison Blues” to him on my guitar because I learned that song recently and it’s really fun to play. And what’s the frog going to do? Walk out on my concert? Come to think of it that is what happened, but you see my point.

Anyway, it’s interesting to look at such physically tiny life that we normally never see. There’s plenty around here. Including wolf spiders that are INSANELY large and terrifying-looking, but ultimately harmless. So when they’re inside I catch them in plastic cups and throw them outside, basically screeching the whole time because if it escaped the cup and crawled on my hand I’m pretty sure I would pee myself.

There is a huge variety of birds; there are mice and turtles, spiders and lizards, and even these tiny bunnies that Monty chases away. I like watching their world. Something about it makes my problems feel smaller, and I don’t know what the explanation is for that.

Anyway, I really don’t like killing anything alive. Especially because I don’t feel like they are in my territory but that I am in theirs…and it seems so pointless to kill them. There was a time I wouldn’t mind killing tiny things, I think. But now the idea doesn’t sit right with me. (Except mosquitoes, screw them.) So I catch them and release them. Save them from the filters. If anything, it helps me feel like I’ve done something. There are many stationary days. Sleep filled and cloudy. It makes sense to save something from drowning if only because I haven’t done anything else that day. I don’t have to, but I can. Might as well save a frog or five.

Health and Happiness and Little Tiny Worlds

Believe in Miracles? Believe This.

Published on February 4, 2013 by Mary Gelpi29 Comments

Good News! I woke up yesterday totally healed. I have loads of energy and no pain at all. I threw out all my pills and I’ve signed up for a marathon and begin full-time work next week! Haha. Just kidding. But that would be cool wouldn’t it? I’d write my final blog post: “Well, I’m all better now. Peace suckers!!!!”

Last week I put out a call to the master of the Universe with a very modern hope that he reads blogs, and specifically mine. Well it appears, he does. Or he did. After a really tough couple of weeks with bone crushing fatigue and other relentless symptoms, I woke up on Monday…lighter. My weakness seemed to have lifted overnight and I felt energy that I hadn’t felt in a long time. It was bizarre. I didn’t think too hard about it fearing if I did it would somehow leave. On good days you just count your blessings and then you get a few things done that have gone undone and overdue while you were busy sleeping, living under a rock. Or covers. You get it.

I was surprised and deeply moved when I looked at the blog on Monday to see so many people had rallied in my corner, sending positive thoughts and prayers. Many of them perfect strangers. My mom had also written an email to family and friends asking for some divine help, as nothing on “this side” was really working. I was again taken back when I signed onto Facebook to see people gathering troops in prayer groups and the like to pray for me…a sick girl who asked for a little relief. My cousin Cindy asked her “prayer warriors” to come together and see if they couldn’t “lighten her load.” On Monday that is exactly what it felt like physically; like my load had been lightened. That heaviness I had been carrying around, gone. Once again, perfect strangers wrote to say they had been praying for me, many of them offering beautiful and supportive encouragement, assuring me I would get through this. People emailed my mom back all with truly inspiring and beautiful things to say, some as succinct as “Hang on, you’ll get through it.” As I read I cried, overcome by gratitude. But more importantly I believed what people said. I was assured I’d see the other side. With each message I felt a swelling warmth in my chest. Suddenly it struck me that the miracle was not that I woke up basically symptom free on Monday. It was how quickly humanity had come together-friends, family and strangers–with powerful intentions, love, support, and healing thoughts for a girl who some had never even met. It reminded me that we are in this together. We are not each one life, but an interconnected string of lives, and that when we assemble for good cause we are capable of incredible things. When one of us is pain, we all feel it somehow. When one of us overcomes, we all win. And maybe most importantly, when one of us strengthens and expands her consciousness, all the worlds consciousness is raised. We all evolve.

I laugh because in my blog I asked God for one day. Just one day of relief. Well, I was given two. By Tuesday night I felt the heaviness start to come back. My muscles weakened and my familiar sick disposition descended on me. I know that on the outside it seems unfair. Why give her two days? Why not give her the rest of her life? And if God were a genie and life were a two-hour movie, that’s probably how it would work. But we are living in the midst of eternity here–our lifetimes in that context are a flash, but each one brings an invaluable meaning to the whole. The lessons we learn often take a whole lifetime to get perfect, but each contributes a small piece to the universal puzzle. Anyway, in my blog I sadly theorized that maybe I was forgotten about. My symtom-free two days reminded me ever so gently that no, I was not forgotten. This is just the work I have to do right now. A lot of it from bed. Seemingly on the outskirts of the high-paced world, the 9-5 jobs, security or fortune or fame. But just because you live a lot of your life in solitude does not mean you’re alone. Just because you don’t wear fancy dresses and attend important events doesn’t make your life’s work or contribution any less important. We all have very individual paths and under closer examination the design reveals itself as perfect. When I consider that my passion is and has always been writing, something that was absolutely untouched by the illness except that it gave me my platform to begin, there’s no question that there is a higher intelligence who’s job isn’t easy either. I doubt the creator likes to see his masterpieces suffer, but that’s the difference between us and him; he can see the finish line and we can’t.

To keep living takes a massive amount of trust on our part, especially in the midst of pain and hardship. But it’s that solid trust inside me that tells me to keep going. That’s what the voice is grounded in; trust in the grand design. That this is the work I have to do right now in order to become whole, to evolve, and to find inner peace. I often fantasize about a life that I don’t have. One where I wear pretty dresses and attend charity dinners and I charm people with gracefully told jokes and stories. “Tell us another one Mary! You’re the greatest story-teller ever!” they all yell.

That Mary Is One Hell of a Story Teller!!

Haha. I have no idea why that’s what I fantasize about, but it is. And maybe one day I will dress up and I will do those things at a party–but for now I need to be where I am and remember it won’t always be this way. Remind myself that I still have access to life’s greatest treasures whether I’m in my grandpa’s pajamas or in a dress at a fancy party: Love, passion, friendship, community, creativity and hope–they’re all still there. I am still young relatively and I’m still figuring it all out. I don’t know exactly what I believe in, I just know that after last week, I believe.

And I hope you do too, because you were very much a part of it.

Health, Happiness, Miracles.

Dog Spelled Backwards

Published on January 28, 2013 by Mary Gelpi45 Comments

Help. I’ve fallen. And I can’t get up.

I have basically been crashed since the day after Christmas. Even before Christmas, my operational value was at maybe 40%. It has steadily gone down. My joints have become cloudier, my muscles weaker and heavier, noise louder than ever, and ordinary light offensively bright. Simply stated, moving has become difficult again, and this is the hardest symptom of all for me to handle. It’s suffocating. I’d prefer pain honestly. My legs are useless. Sometimes I find myself reaching for things across the bed without so much as flinching my legs because it takes an unwarranted amount of energy to move them. I can’t say what is happening to me. Or what has happened to me. I know that every night I pray really really hard that the next day will be better. When I wake up the next morning, and things are the same or worse, I keep going. I take my daily pill cocktail, wait for relief, stare out of windows, and contemplate what a strange and sedentary existence I have. What else can I do but go on? It’s hard. It hurts. When I think about how long it’s been, I fear how long it could last. But I’m not giving up now. I can see the appeal, but I’m not gonna do it.

Chronic Fatigue Syndrome doesn’t kill you, directly. It’s rate of mortality comes from a scary little thing called suicide, and having suffered with this since age 9, it’s easy for me to see why that option can feel like it’s all you’ve got. It doesn’t feel like much of a life, laying in bed each day. Only hearing the sounds of life but not actually participating in them. It’s like smelling the aroma of baking bread and never actually getting to eat any. You watch entire seasons change, babies turn into toddlers, this Christmas into next Christmas, and you expected things to be different by now. You’d fantasized a certain life for yourself by the time you got to 25. And when that didn’t happen you said 26. And then 27. And now 28. I’m starting to forget the numbers. They’ve never changed anything before.

It’s really hard to understand God during these times. I grew up Catholic and have always had my relationship with God- but it’s very personal. I even imagine him when I speak to him, in a very specific location, as if a bulleted address on Google Maps. I think of him now, through darker and unhappy times and I think either he trusts me too much, or he forgot about me altogether. But would the master of the Universe forget about someone? So much goes into making a person and a life. I know that I am an incredibly tiny tiny piece of the whole, but still, a piece. And while in the context of eternity and potentially multiple universes we can feel incredibly small, I somehow don’t doubt for a second that my life matters, and so does everyone’s who is alive. I don’t say that with a lot of pride either. I say it because there is something solid and untouchable in me, something unstirred by discouragement, failure, despair, loneliness and tears. It says Keep Going, and so I do. But the truth is I don’t know what for and I don’t even know in what direction. Certainly I am lost. But it’s sort of for my own bitter curiosity that I won’t give up. I want to see what’s at the finish line waiting. I need to know this is not all for nothing.

I must be honest, I think a lot about how stupid I think my life is. I know that seems irreverent at best, but sometimes you just have to laugh about it. Today I was too fatigued to brush my teeth. My God! It’s so stupid! It’s so stupid it’s funny. You should see what I look like these days. Somewhere between Jim Carrey when he visits the Nut House in Ace Ventura wearing brown boots and a pink tutu, and an old senile man in pajamas on his front porch with a cigarette and a shot-gun. Sometimes I stare at myself in the mirror, not quite recognizing what I’ve morphed into. The steroids have puffed my face, my skin is pale and there are dark circles I never had until now. But more than that, it’s like the lights are out. What’s that phrase? A shell of who I used to be? Something like that. I feel like a caged animal and I fear that’s what I’m starting to look like too.

All my classy PJ's were in the wash. — Thanks for the clothes Grandpa!

Tonight I cried I guess because it all catches up to me once and a while and feels too heavy to keep in. My mom says we’re all due for a little meltdown now and then. I cried but what I wanted to do was scream, because I am physically nauseous from how sick I’ve been. How relentless it’s been. Day after day, hour after hour. When the weakness makes just standing up a chore that takes energy, my stomach turns. I’m tired of being sick and I’m tired of taking pills. I want to scream but I don’t have the energy for it, so I cry. By default.

When I cry I blow my nose really loud, hoping that it’ll wake God up from his sleep. I hear a rustling and when I look up, it’s Monty standing there, wagging his tail at me. He’d snuck in when my head was buried in my hands. Truthfully, I was happy to see him. It then occurred to me that Dog is just God spelled backwards…so maybe he is listening after all. Maybe Monty is God! I don’t know. And that’s the hardest part about moments and times like these. We don’t see how they fit into the grand design of our lives yet. All we see is what’s happening now. For now, there’s pain and suffering, and if God reads blogs, then I guess this is me asking him to take it a little easy. Maybe just for a day. Either way, I will still go to sleep with hope that tomorrow might be better. And if it isn’t, then the next day, or the next day or the next. Keep going something tells me, and since I have nothing else to do, I guess I’ll do that.

Health and Happiness and Keep On Keepin On.

You’re Doing It Right.

Published on November 21, 2012November 21, 2012 by Mary Gelpi5 Comments

At one time, each and every human being on the planet was a tiny baby in a mothers arms. In front of him lay a pristine and untouched future, where anything was possible. One thing will shape the direction and vibrancy of that future more than any of other thing; love. From whom he learns it, from whom he does not, how he is taught it, and that he experiences it in its most authentic and pure form- unconditionally. Money is no matter, health is no matter, religion, beauty or brains. Without the message that love sends- the gentle reminder that who you are matters- all of these things are fine but rendered useless if they are anything but anecdotes to a love-filled life. There are many ways to measure a life, and many definitions to the word success. You don’t have to go far to find the richest people, the famous people, or the ones deemed very important. And they will often gladly share their secrets to what we call success. But behind numbers and cameras and curtains is a very basic human need- not desire- that we all share no matter what characteristics separate us. We have to have love to evolve. And we have to give it to surrender. And we have to lose it, at least once, to really know who we are. And when we find and learn to love ourselves wholly, then might we love others the best possible way. If we haven’t used it to fill holes, if we haven’t given it to get control, then what we’ve done with love, we’ve probably done it right.

Kennedy tea party — Who Doesn’t Love a Tea Party?

24145779155 — The young lovers of Moonrise Kingdom. Have you seen it yet? It’s good.

26645396796 — Bears Love Each Other TOO.

nutterrbutter — Walrus loves birthday cake.

Monty and Mikey may or may not love when I dress them in towels.

Health, Happiness, Love the Right Way.

The Story You Tell Yourself

Published on October 24, 2012October 24, 2012 by Mary Gelpi17 Comments

It is sunrise again in California and I am reflecting on the last few months of my life. I just dropped my mom off at the airport to fly home to tend to other business. Newsflash, she has a life outside of nursing Mary back to health! I’m really lucky she was able to come. She did an incredible job as most Dr. Moms do alongside my sister and I am much more functional than when she arrived a few weeks ago. I can climb the stairs easy peasy this week–that is something new.

I feel a lot more at ease since she arrived and helped me to process some pretty heavy thoughts I was having. For one thing, I kind of thought I was dying, because I’d never felt that bad before and I imagine death must feel like something close to that. It’s pretty unsettling feeling like you can’t walk or hold a brush to your head or take a shower. Forget climbing stairs, I was scoring my days on whether I could walk to the bathroom or not. Since then my strength has slowly inched its way back. I still do very little physically throughout the day as to not overdo it, but I can feel some energy where there was none before, and for that I am really grateful. I’ve been drinking protein shakes from the naturopath doctor three times a day along with 12 other supplements alongside my normal pill cocktail. I’ve been drinking Chinese tea from Dr. Xu that tastes like ground up birds nest and getting acupuncture twice a week. My B12 was low so I even learned how to give myself a shot…in the butt. It’s impressive. But anyway, it’s helping. All of it, I think, is working in different ways and putting Humpty Dumpty back together again.

I notice that every day has it challenges. Mine has different uncertainties and struggles. Will I be strong enough to climb the stairs, will I get to shower, will Monty and me save the world?! And the truth is I just don’t know. None of us do. There is no certainty about what will or won’t happen tomorrow. There is just here and now. And I notice that when I examine my life with clear hindsight and an open-minded eye, I see that it’s not bad. Like at all. It’s actually kind of enjoyable! I’ve gotten to spend time with my sister and brother-in-law that I never would have had otherwise. I’m lucky to have a mom who was able to fly out at the drop of a hat and give me some much-needed help. I get to read and write as I please. (Even though it’s mostly from bed.) I get to spend ample time with my favorite person, Monty, and I get to put my very little energy towards something positive–writing, humor, optimism, and good news. There are a lot of outcomes of this seemingly crappy situation that are not themselves crappy. They’re more like great. And that always gives pause for reflection. But trust me, it’s easy to go the other direction. The slightest tip of the scale and I could see things very differently. Darker. And I have those days sometimes. I could say it isn’t fair. I could say this isn’t the life I wanted or signed up for. I could look at all the healthy people with their functional lives and long for that to be mine. But, like Iyanla Vanzant says, that’s a life path that doesn’t belong to me. So it’s important to let it go. As long as I try to get back something that was never mine, I will suffer. As long as I tell myself a sad story, I’ll pay.

typerwriter-edited-sepia — What’s your story morning glory?

We tend to think we know best for ourselves. And many times that’s true. But the problem with the human experience is that we are stuck in the mental limitations of space and time, so it’s hard for us to see our lives in the context of eternity. But that’s the truth of existence. We’re just a small part of something much larger, and we aren’t meant to see all of it at one time. I think we’re meant to just hold on and enjoy the ride, and when it’s a shit show, like my life the past year, you hold on tighter. You pull in people to help. You acknowledge there is something bigger than you, and focus your energy on balance. On acceptance. On inner peace.

The thing is, you can’t just tell yourself a happy story about your life and you’ll be happy. You have to believe the story you tell yourself. For some reason it’s like we’re conditioned to believe the sad story more than the happy one. And through the dark times especially, it’s not as easy to find the pretty things, but they are so valuable when you take time to find them. That’s why acceptance is so important. Once I stopped focusing on the happy life I would have once I got better, and instead focused on how to be happy with the life I have now, I found much more success. And it takes work. I have to remind myself everyday of the things that I am lucky for, and most of the time it’s a no-brainer. It’s family. But it’s easy to forget. To slip up. To fall into the humdrum of life and feel like you’re not where you’re supposed to be. And maybe you’re not. But most of the time, life just requires us to be present where we are. We already have everything we need, we just have to be aware of it. In The Untethered Soul, Singer wrote that “Life is surrounding you with people and situations that stimulate growth.”So before you judge your life and your hardships, try to acknowledge that this is what you need in order to become whole. In order to become who you are– the best possible version of yourself. It sucks sometimes. It’s hard. Don’t I know it. But if in the end it forced you to grow and become awesome and happy, well then, it’s worth it isn’t it? Maybe it isn’t such a sad story after all.

I’m learning I have to be careful about the story I tell myself. Because if it’s a happy one, that will be my life. But if it’s a sad one, that will be my life, too.

Health, Happiness, Stories.

Good News.

Published on October 8, 2012October 9, 2012 by Mary Gelpi7 Comments

I never write on Sundays, but I have a little energy today and after a sick and cloudy week, I’m taking advantage of some mental clarity. The truth is I don’t have a lot of news physically. I have been the weakest I’ve been in my life. It’s a little nuts. It feels like trying to move through maple syrup. So life has been in slow motion, literally. But as always, I have help and constantly remind myself how lucky I am for it.

The real challenge with this latest crash has been maintaining emotional resilience. I remind myself of the same idea each time it gets overwhelming; this is only temporary. And when times are golden and everything is going perfectly, that will be only temporary too. The point is to find inner peace and joy that is resilient through circumstance. So just look at the bad times as intense training. Training isn’t forever. At some point you go out into the game and test your skills. And no doubt, the world will always provide you with situations in which to test yourself and what you’ve learned. This year has had a lot of training and a lot of tests, but a part me feels that I am only just beginning to understand any of it.

Since I have a lot of down time, not moving and all, I do a lot of weird things. Like look at nothing out of a window for a long period of time, not really knowing how long has passed when I snap back to present. Sometimes I listen to Debussey’s Claire de Lune over and over and over and just feel the aliveness of a song like that, even though I feel like only a half-alive body. I watch French movies on Fridays because verbally, it sounds nice. French Movie Fridays. Also I love French movies. I write down things in my notebook that I don’t immediately understand or know from where they come; sometimes I just feel like the person holding the pen, channeling something else altogether, something separate from me. Deepak Chopra would say there is no separate, there is no you and no me. Each person manifests the entire universe, all of the people, and the source itself, within themselves– thus separation is just a human illusion. This is why when you hurt someone else, you hurt yourself. This is the oneness found in “waking up.” This is how he explains the part of you that isn’t born and won’t die. It embodies it all, and it is eternal. So I guess some of the things I write down are being pulled from an all-access consciousness that has always existed. I don’t know. Maybe getting sick is what it would take for me to stop and pay attention, to finally write down dormant words, to know what it is to be alive. I just know sometimes I write things that are far more intelligent than I am and I don’t even feel right taking credit for them. Except the White Girls on Facebook post, that was me. :)

There’s a funny phenomena that happens when I’m sick: Once I start to feel better and recover, I can never remember how sick I was or how bad it felt. I can imagine it but I can’t feel it. It’s like my brain deletes the sense memory of it. I have read that this happens to women after childbirth, and I guess it’s an evolutionary survival mechanism. If women remembered how bad it hurt, they’d never have more babies! It’s like the worst hangover you’ve ever had. You swear you won’t do it again, but then the beer tastes so good and the buzz is so nice! I don’t know what the meaning is behind not being able to recall precisely the physical feelings, but being this weak and incapable feels pretty burned in my mind by now. I may not be able to access these feelings again once I’m better, but what I need to remember is that shit, life is fragile. One day you wake up and you’re too weak to walk and your mom and sister have to feed you. It’s not all pretty, but I know there is meaning in it. It’s easy to throw up your arms and scream WELL WOE IS ME, life is unfair and none of this matters. And I’ve done that some days. The problem in doing this is that the very conclusion leaves your experience meaningless. The suffering is the hard part, but if you can hold on, if you learn to live anyway, then you’ve transcended the pain and evolved and it wasn’t for nothing; growth can never be bad. Following the pain always comes pleasure, even if it’s a simple change in perspective. Plenty of people have experienced far greater tragedies than me and come out on the other side– happy and wise. Like my mom for instance, who survived the death of two husbands, but didn’t succumb to darkness and managed to emerge happy and loving.

The goal in all of this for me is not just to stay positive and hopeful, but also to keep my perspective wide and my problems right-sized. This is just a moment in the context of eternity. It’s still really hard but it’s not forever and I’m not on my own. It’s easy to feel like the world is really big and you are really small and your little problems are terrible but that they don’t really matter. But they do, and you do. The way to make them matter most is to conquer them– with humility, grace, whatever you got. Everyone has their battles and each leads to their own lessons and outcomes, all necessary for the evolution of the world. But we all have to do our part. I don’t pretend to know how it all works, and I don’t think we’re meant to know the whole truth in this limited dimension we live in. That may explain why I had a dream last night that TRANSCENDED TIME AND SPACE and I have no idea how to put it into words. I probably sound like a kid during his first experience of dropping acid, but some things we just can’t fathom on earth. And that’s fine. We just need to do our best.

So I’m going to keep trying. Keep hanging on. Keep reading what the Greats have to say and try to make sense of it all. It’s been a challenge to stay optimistic and happy, but I know it’s necessary and I will work just as hard at that as getting better physically. In that light, I’ll introduce a new project that begins tomorrow. I’m going to report a few minutes of only good news every day for 30 days. I’ll begin with personal good news (like, I had enough energy to take a shower today!) then report national good news and then worldly good news. The idea is simple- I’m too young to be cynical. My situation is depressing enough and I don’t want to keep watching the news to see how crappy the world is and how bad people are. It’s important to stay informed on events, but I think it’s just as important to see the good things people are doing and the positive stories too. So that is the newest project and I will post the first video tomorrow around 6–that seems like a newsy time doesn’t it? I will always wear a plaid shirt because plaid makes me happy and I have a lot of them and we’re striving for good vibes here. To give you an idea of things I won’t be talking about, here is the backdrop to my very high tech news desk.

Watch the good news at goodnewsinplaid.wordpress.com.

**Addendum! I jumped the gun on my 6 o clock timeline. I’m a little behind. But the good news is now up at goodnewsinplaid@wordpress.com. If you have good news you’d like me to read on air, send it to goodnewsinplaid@gmail.com. It can be anything from your little league team won to you’ve been constipated for a week and maybe you finally had a bowel movement. If it’s good, it’s good.

Health, Happiness, Plaid.

How to Hang On.

Published on October 2, 2012 by Mary Gelpi12 Comments

I came across these words in the middle of the night last week when I was really sick and couldn’t sleep. I was feeling scared and anxious–of what I wasn’t exactly sure, but there was some sort of doom over my head and I didn’t know how to relieve it. This passage helped. Today my mom read to me the same excerpt out loud while discussing life and love and hardship. I figure twice in seven days is enough of a sign for me to pay attention to the words, so I thought I would share them here as well. They are written by the mystic Joseph Cambpell.

The loss of a love and the pain of a broken relationship is an overload of projection. That’s all it is. In youth, your whole life is this wonderful dream that “This is It”: this relationship is the fulfillment of my fantasy and I can’t imagine life otherwise. No argument can quell this feeling of total projection, of everything in the other one. I guess we can all recall an episode of an adolescent relationship that seemed to be the all-in-all and then went to pieces for some reason.

When a relationship breaks off, it takes a person a little while to settle and find a new commitment. It’s after the breakoff, when there is no new commitment and life has been divested of all of its potentials, that this painful reaction takes place. For some people this is a dangerous period.

The psyche knows how to heal, but it hurts. Sometimes the healing hurts more than the initial injury, but if you can survive it, you’ll be stronger, because you’ve found a larger base. Every commitment is a narrowing and when that commitment fails, you have to get back to a larger base and have the strength to hold to it.

Nietzsche was the one who did the job for me. At a certain moment in his life, the idea came to him of what he called “the love of your fate.” Whatever your fate is, whatever the hell happens you say, “This is what I need.” It may look like a wreck, but go at it as though it were an opportunity, a challenge. If you bring love to that moment – not discouragement – you will find the strength is there. Any disaster you can survive is an improvement in your character, your stature, and your life. What a privilege! This is when the spontaneity of your own nature will have a chance to flow.

Then, when looking back at your life, you will see that the moments which seemed to be great failures followed by wreckage were the incidents that shaped the life you have now. You’ll see that this is really true. Nothing that can happen to you is not positive. Even though it looks and feels at the moment like a negative crisis, it is not. The crisis throws you back, and when you are required to exhibit strength, it comes.

The dark night of the soul
comes just before revelation.

When everything is lost,
and all seems darkness,
then comes the new life
and all that is needed.

Health, Happiness, Hang On.

A Shit Show.

Published on September 26, 2012 by Mary Gelpi13 Comments

I don’t know of any other way to describe the past week except as a shit show. And maybe that points to how juvenile I am, but I honestly can’t think of a more sophisticated word. If you read my last post, you can see that I was in a bit of a bad way last week. I crashed really hard last Monday and was feeling pretty deadly. We did the normal protocol and quadrupled my hyrdrocortisone and I mostly stayed lying on the couch or in bed, researching the little amount of money spent on this illness and writing somewhat of an angry blog about it. I don’t usually like to succumb to moments of mental negativity like that. I think anger has its reasons for existing, but I have always wanted this to be a place of optimism, humor, and hope. So I hope I didn’t put too bitter a taste into the community here. I also need to remember that more research than ever is being done, and while we do have a ways to go, we’ve already come along ways. I’m not going anywhere, and no matter how far agencies like the NIH and CDC take the research, the goal is always to be as happy as possible, with whatever you got. The other goal of this blog is to promote awareness, and so maybe my little moment of anger can help do that in the long run. I think the best thing it did was inspire many of you to comment or email with your stories. Many people say it helps them to read this blog, and the truth is, it is just as helpful for me to hear from you. It’s easy to get so lost in your own story that you only see yourself in the world. The truth is no matter how poignantly real it can feel sometimes, we aren’t alone in this, and that’s maybe the most important thing to remember.

On Sunday morning I had started to bounce back from my week-long crash. I thought. Part of the “Shit Show” of last week was that on Monday, our kitchen flooded due to a leak in the wall. It was going to involve some major reconstruction (basically knocking out every wall in the kitchen) but they assured us it would only take a week. My sister thoughts were that we should move apartments. She’s all too familiar with how long a “week” takes in contractor time. But the idea of even packing my bags in a suitcase felt devastating to me, and luckily my brother-in-law was in no mood either to up and move overnight. So we decided to stay. But a few days later as I was walking through the hall, water seeped up through the carpet onto my feet. Never really a good sign. The workers came back and found the leak had begun to flood the master bed and bath and the front closet. By Friday morning, I was still pretty crashed and somehow there were 5 workers in the kitchen beginning demolition and making a shit ton of noise. The noise permeated my dreams but I stayed sleeping. If you can call it that. Keegan came in my room a few times asking if I wanted to go to his parents house to sleep, but the idea of getting in a car and going felt like too much. I said no, rolled over, and went back to exhaustive sleep. The demolition went on.

By the afternoon Keegan and his friend were moving the big stuff out to an apartment across the street. I packed in the laziest sick person way possible. I honestly didn’t have a lot of stuff, but what I did have I threw in two boxes Keegan gave me, and left all my clothes on hangers. Keegan and his friend moved my bed first and the couch so that I could literally go from my bed in the current apartment to my bed in next one. As they moved it on the first load, I laid on the floor in my empty room with Monty and fell asleep staring at the ceiling. I watched Keegan and his friend carry heavy things and sweat and noted how interesting faces look when you’re looking at them upside down. Here are some pictures of me during the move.

As you can see I’m a big help. Anyway in two days, Amelie and Keegan had everything packed, moved and unpacked, and I laid there watching life walk back and forth carrying boxes over my head. It was a new perspective though and I’m always down for new perspectives. My favorite line from the whole moving experience came from my sister as she was unpacking in her new bathroom and I was laying on the couch counting ceiling popcorn. “Our fucking toilet is leaking!!!!!!” This was after three cabinets fell completely off of their hinges in the kitchen and the sink pipes leaked underneath when you turned the water on. When it leaks, it pours. If I could consume alcohol, I would have played a drinking game called “Drink Every Time Something Breaks” and had a gay old time. Instead I slept or played DJ for Amelie and Keegan while they packed and unpacked–which mostly consisted of me playing Carlae Rae Jenson’s “Call Me Maybe” on repeat. God that song is good.

By Sunday we still didn’t have cable which meant we WERE WITHOUT OUR SUNDAY FOOTBALL and my sister was WITHOUT THE RED ZONE ON ESPN which meant she COULDN”T TRACK HER FANTASY TEAMS ON A PLAY BY PLAY BASIS which was a problem, you can imagine. So we went to a bar with 4,000 TV’s and I felt sad as I watched the Saints lose in overtime and was the only Saints fan in the joint. I still yelled ‘Who Dat’ if ever so quietly. Unfortunately my body felt like it was slowly slipping away from me. An hour later when sitting upright felt near impossible and I felt a migraine coming on, I went home and fell straight asleep. Whatever momentum I had felt that morning was long gone and when I woke up a few hours later I had the migraine of the century, which lasted until yesterday. I didn’t fall asleep until 4 on Monday morning and when I woke up, I was more weak than I’d ever felt. I took Monty outside, but with this new apartment comes a flight of steps to get to ground level. I hate those steps, and I cursed every last one as I climbed them one by one, the way old people do. I threw the ball for Monty a few times, then apologized to him for being a human wasteland and came back inside. I set up camp on the couch and wondered what had happened to my limbs over night. It was like the cement fairy came over night and filled my whole body up. Thanks cement fairy!!

Yesterday morning I didn’t think I felt any worse until I tried to get out of bed. It was really hard to move. Nearly impossible to walk. I didn’t feel like I could make a fist. I wasn’t sad but I kept breaking down in tears, I think because I was scared. This felt different; worse than it’s felt before and I was nervous this time I might actually croak. Usually I just curse the illness, roll back over and go to sleep. Anyway, going to the ER is always a last-case scenario but after talking to Dr. Emils (one of my best friends in her last year of med school), my mom and my sister, we decided it was the best option. At least we could eliminate the possibility of eminent death since I had been getting worse over the week and the iv fluid and steroid would help with the weakness and get the migraine to go down. So Amelie left work early, helped me up the stairs and I cried as I said goodbye to Monty because I really didn’t want to leave him and I was also scared I’d get bad news at the hospital. It was the first time I found myself praying they wouldn’t find anything, because usually I’m looking for an answer. This time I just wanted the normal “We don’t know exactly what’s wrong, but here’s something for your discomfort.” Luckily, that’s what I got. As well as kind nurses and doctors and basically no wait time. A whole other world compared to the New Orleans hospital last January.

Hospital gowns, like mullets, are business in the front and party in the back.

So, that brings us to the present. The good news is I’m not dying. I only feel like I’m dying. Haha. But, that I can handle. For some reason I woke up with swollen joints this morning, so it’s just another reason to take it slow. It’s also a creative challenge to see how many fun things I can do from the supine position. I don’t know what this crash is about, but it’s just going to take some waiting out. The best part through all of it is I realized just how much I didn’t want my sometimes shitty life to be over. I had been pretty down the last week being sick. I felt myself saying “Owell” as a speeding car raced past Monty and me on our walk and I entertained the thought of it taking me out. It was just my dark sense of humor of course, but now I say “No way JOSE!” to that car, and I live to see another day. Even if from the couch. Sorry for the length of this one. Like I said, it’s been a shit show of a week

Health, Happiness, Shit Shows.

A Sick Kid With Some Questions; The Scandal Behind Chronic Fatigue Syndrome.

Published on September 20, 2012 by Mary Gelpi22 Comments

It is midnight and I just finished taking a bath. I experienced a really bad crash a few days ago and spent the last two days in bed waiting it out. I am unsure what caused this most recent crash. I have been taking it very easy here but something zapped. A fuse blew. Bye bye Mary. The bath I just took was the first one I’ve taken in four days. I know that this is disgusting. I am someone who prefers to shower everyday, do my hair and makeup everyday, and wear clothes that are coordinated like the commercials tell me; transitional outfits from day to night! It’s no secret that my frequency of showers has lessened in the last two years. But when the simple act of getting up to blow your nose, or reaching for something that is more than an arm’s length away and you return to your position panting, out of breath, heart racing, body weighed down…it sort of leaves showering out of the question for the time being. It’s impossible to stand that long. This is why when I do muster up the energy to get clean, I take a bath, which requires a lot of energy in itself. But I take a sick person bath. I use a water bottle to pour water over my head so I don’t have to sit in weird positions and once I’m in, I’m in for a good hour. I don’t know why, but I often start to feel like a human being late at night. It’s like the clouds part just for a moment. So while I get that small window, I take a bath and tend to personal hygiene; Brush my teeth as hard as I can, because I don’t know if I will have the energy to do those things tomorrow. If today is any indication, then probably not. Monty sleeps, raising his head every now and then at a noise I make, then goes back to dog dream world.

I know this all sounds pretty grim, and it is. This is the ugly part of being sick. The part that people who know me socially don’t ever see. The part that sometimes, like yesterday, become too heavy for me to bear. Not just physically, but mentally. All of the sudden, it weighs too much. I feel stuck. It’s all piled onto my chest to where even my breathing feels labored. I call my mom and she walks me through it. I let the dark thoughts come and leave. They are just thoughts, fleeting and insignificant. I say “I will not lay down and die today.” And then I write it in my notebook. And then I lay down. But I don’t die. (Spoiler alert!)

I survive. Suddenly, I don’t want to write poetry about being sick. I don’t want to find the wisdom in the pain. I don’t want to ask what the lesson is and find how I am a better person because this situation forced me to dig deeper into consciousness. Which is true, it did. But some nights like tonight, I’m just ready for it be over. In my bedridden state the last few days, I’ve been researching the very bizarre and twisted history of this illness, and it’s surprising to say the least. Tragic and appalling to say the most.

I want to know why the National Institute of Health has continuously allotted such low sums towards the research of CFS. For 2012 it has allocated $6 million, ranking it 220 out of 232 diseases. You can find it at the bottom of the list underneath Psoriasis ($10 million) and Hay Fever ($7 million). To give some context, similar illnesses like MS were given $121 million and Lupus, $105 million, but have less prevalence and a similar level of disability. As a result, countless studies and research efforts in the way of CFS have been put on hold or simply terminated citing funding issues.

Firework of dollars — It takes money honey.

I want to know why the Center for Disease Control has repeatedly ignored, overlooked, and downplayed this illness for a quarter-century–An illness that the head of the CFS branch himself said left patients as functionally impaired as someone with AIDS or Breast Cancer. The agency not only minimized it’s detriment by calling the thing “Chronic Fatigue Syndrome” (they might as well have called it Lazy Ass Tired Folk Disease) it’s now been documented that the CDC routinely diverted money intended for CFS research to other projects. This is all documented in the book Osler’s Web and this article by David Tuller from November of 2011. A 1999 report from The Department of Health and Human Services found that between 1995 and 1998, at least $8 million was charged to the CFS tab but rerouted to other projects and another $4 million could not be accounted for.

I want to know why the most promising research of CFS is being funded and executed by private institutions and donors, like the Whittemore Peterson Institute or at academic institutions like Columbia and the University of Miami…no where near the CDC, the NIH, or its constituents.

This isn’t just about me or just about other sick people with this illness. Contested illnesses like this cost the US billions of dollars annually in lost productivity and depletes healthcare resources. Less than 1/5 of patients with CFS work full-time, and more than half receive disability benefits. The estimated cost of lost productivity from CFS annually is $18 billion. Just over two years ago I worked full time, spent my money, paid my taxes and I was happy to do it. Now I am unable to work and unable to receive or afford health insurance. My doctor has suggested I apply for disability. I am 28. I do not want to continue taking 25 pills a day. I do not want to live off disability. I would actually like to go to work and be a contributing asset to the country. But I know that in order for these things to happen, the dialogue has to change. There are actually people and doctors out there who don’t believe in this illness, as though it were fucking Big Foot.

I know that getting mad and pointing fingers won’t really help me out tonight. I have accepted my life with this illness. I will be OK whether things change or not. I have found ways to be happy given my circumstances and some days are harder than others. I guess you’re catching me on a hard day. I have a family who supports me and was lucky to find a doctor that is a leading researcher of this illness, although her clinic at this point is barely staying afloat. But not everyone has what I do. I have received so many emails from people whose doctors and/or families have dismissed them, not believed them, or just written them off as depressed. This has to change.

I don’t know what the next step is, I just felt the need to get this stuff out in my little corner of the internet. Maybe the right set of eyes will befall on this one day and some real change can take place. Maybe nothing will happen, in which case, nothing was really lost. I’ll be in bed either way. The thing is, I am not a little kid writing to Santa Clause–This is change that is actually possible. I think there are far more important matters in the world than CFS/ME research and I look forward to the day when this is no longer my cause. I know this country can do better, and I have not ever lost hope that with the right people and minds at work, this is something we can fix, even if it’s after I’m gone.

Health, Happiness, Change.

Sometimes You Gotta Say Yes.

Published on August 29, 2012August 29, 2012 by Mary Gelpi12 Comments

Even when you don’t feel like it. Even when it hurts. When it would be not just easier or more convenient to say no, but less painful, less exhausting, perhaps even, the healthier option– even then, sometimes, you gotta say yes.

As my role as the “sick girl” has slowly developed over the past few years, I’ve noticed how often and how easily I’ve begun to say no to things. And that’s mostly for the sake of my livelihood. I don’t have the endurance to do the things I once did, nor do I have the resilience to bounce back if I overstep the boundary. There’s an invisible line with illnesses like this; one that not even the sick person can see, and it doesn’t make a sound when you overstep. Not until later, when it’s too late to take anything back. So, you pay for it. And you start to feel your way through it, constantly guessing whether you’ve gone too far or done too much. It’s about as easy as pin the tail on the donkey in the dark, with booze. But this solid body of mine, as broken as it is, it always lets me know if I’ve infringed on that boundary. Always.

The last few days have been crappy. Not Colorado crash crappy, but, crappy. There have been a few 26 and 27 pills a day, days. Which I’m learning how to be OK with. Even sick days, where the most you do is brush your teeth, are OK too. They have to be. It’s interesting what this illness turns you into; a spectator where you once a participant. I often feel the quick pace of the world spinning and everyone rushing by with their busy lives, and then there’s me…just kind of, ~~standing~~ lying there. I miss being busy. There’s something comfortable about always having something to do, someone to see; there’s an importance about it. I notice now how different my to-do lists are verses my to-do lists a few years ago. 1. Wash clothes. 2. Pick up prescriptions. 3. Buy new notebook!

I’ve begun examining my life a little closer lately, and am putting a lot of thought into how I spend my time. It’s really crazy to think that I can sort of do what I want given that I don’t have a full-time job or any REAL responsibility besides my health and my dog Monty. (Although I don’t know, one might call my constant correspondence with the Walgreens pharmacy a full-time job in and of itself. For real though.) The thing is, since I can’t hold a full-time job right now, I don’t have any income. So that’s the first damper on “Doing what I want.” The second damper is, duh, I’m incapacitated most of the time. If I had my way, I’d be going, and doing, and meeting, luncheoning, and painting and creating and…you get it. Saying YES a lot. I’d be one of those busy people with alphabetized spice racks and really organized DVD collections. And I’d run half marathons for fun! BLECH. Scuse me, I just puked thinking about running a half marathon. Anyway, that’s not my life. Most of the time I feel too exhausted for showers and everything I buy at this point is on someone else’s dime…so it’s really teaching me a lesson in humility, appreciation, and grace. Every night I pray that I will be able to pay back everyone who has been so gracious in taking care of me. And I solemnly believe that day will come. One day.

In the meantime, I have a lot of something that many people don’t: free time. And whether I’m sick or not, it’s up to me how I spend my time. I find myself feeling bad a lot about not having a full-time job and not being able to support myself. I was used to having a job and independence define me. But, I think that’s pride and the ego getting the best of me and I constantly have to remind myself that if I could, I would. But right now, it’s not where I am. So how about instead of feeling shitty on top of feeling shitty, I try to make better use of my time. I decided I’m going to read as much as I can, write as much as I can, and start looking at this free time as a gift instead of something that “happened to me.” A lot of people would love time off from work, to be a spectator, to read for the sake of reading. To be honest, not having something to do is harder than you’d think. We’re kind of a culture that tends to define ourselves by our work. I guess I’m redefining both my purpose and the definition of that word. Is it still considered work if you’re not getting paid?

This week has been rough health wise, but today I was sick and tired of being sick and tired more than I was actually sick and tired. SO, I said, screw it. I took a bath, got dressed, and went to the park with Monty. Not because I felt like it, not because it felt good even, but because I needed to get out. Sometimes I do the things I would do if I weren’t sick, just for a little while. I can go outside. I can throw a ball for Monty and finish reading my book. I felt shitty the whole time, but mentally I needed it. Chances are, I’ll pay for it tomorrow. But it’s one of those weeks where I felt like I would be paying for something tomorrow whether or not I did anything today, so I went for it. Every once in a while, it’s nice to feel like things are on my terms. It’s my way of giving the illness the middle finger. And you know what? It felt good! Screw you sickness. Today, Mary Gelpi SAID YES.

OK so maybe I am really over-glorifying my little trip to the park. But, I have to keep myself in check. It would be really easy for me to say no to anything that required leaving the house or socializing with people. I can feel the crotchety 80-year-old inside of me getting way too comfortable. I remind myself that I am 28. I need to stop being so opposed to meeting new people. (Dude, I hate meeting people. Also, I’m terrible at it.) I have to be OK with going places sometimes, because I think our souls like a change of scenery. I need to not automatically say no, even though my experience gives me that tendency. Sometimes I will pay for it, yes. But there’s a price to be paid for constantly saying no, too. So I’ve got to find the middle. I’m still young, and I need to start acting my age. Before I know it I’ll be drinking Ensure and wearing Oopse I Crapped My Pants. And then meeting people will be REALLY hard!

You know what else I did today? Bought a new notebook. That’s my favorite thing to buy. I’m very particular when it comes to notebooks. It takes me a while to pick one out and I sit there in front of the shelf of books running my fingers over pages, opening and closing it, taking measurements and looking like a crazy all the while, but I like to take my time. I can’t have things like paper texture or wide rule lines interfering with my writing. Anyway, I found a good one after going back and forth between two for 10 minutes. This is typically what I do when I buy anything. I’m very indecisive. So I’ll buy one, and then go home and think about the other. It’s terrible. Anyway, I’m trying to work on that. So I’m going to do some writing. And then some reading. And then I’ll do it again tomorrow I guess, in a park, and throw the stick for Monty. Because that’s what my life is right now, and it won’t always be that way. Maybe it’s not about being important. Maybe it’s just about being.

Health, Happiness, Yes.

*To all my family and homies in New Orleans, my thoughts are with yall. Although I’m pretty sure most of you are drunk and having an OK time. Stay safe.

Is Happiness a Choice? A Book That Challenged All My Notions, and Won.

Published on August 23, 2012August 26, 2012 by Mary Gelpi10 Comments

I think my favorite present to both give and receive is a book. And not an e-book, not a kindle or a tablet thingamajiggy. A real, tangible book with pages to flip through and words that you underline and notes in the margin that you come back to later. There is something necessarily palpable about a book for me. Maybe I just really like turning pages, but I don’t think I’ll ever make the switch to electronic literature. I know it costs us trees, but I kind of feel like a tree would be happy to be a book. If only trees could talk. OK, anyway, I received a book from my mom for my birthday, and I’ve been lost in it for the last 4 days. I kept telling myself I needed to write, but my urge to read was stronger. I had to finish it before I could do anything else. I think it may be one of the most important books I’ve read as of yet.

“The Untethered Soul” is written by Michael Singer and I’d never heard of it or him until I began reading. The book is 181 pages but is densely written and covers everything from consciousness to identity to happiness to God to death to Christianity to the Tao. I really don’t know how he combined all of these topics so succinctly and covered them with such perfect simplicity, but he did, and it all made perfect sense. Every word. Sometimes I’d read a paragraph over and over, not because I didn’t understand, but because it felt so good to read the words. It was like light would suddenly pour in the room, and with each page (each TANGIBLE page) I felt more clarity, maybe even more happiness. At least more awareness of it. There is such a wide variety of topics he covers and methods associated with them, but he ties them all together seamlessly to teach one huge and vital lesson; to know yourself, and to find bliss. It will be difficult to summarize the whole thing up on just one page..this may need to be a two parter. So I’ll just cover a few topics that really captured me.To begin with, you can’t fix the world. You can’t fix other people, and you shouldn’t try. But you can become the purist and most open version of your Self, and that is your gift to the world. You will be the most successful and biggest help to humanity by knowing yourself truly, and waking up–becoming conscious. So long as you are unconscious, reacting to external factors, hiding behind fears and anxieties, letting that voice in your head dictate important matters, you cannot be of help to the world. You are stuck in your mind, and so you can’t go any further or higher up than that. Not until you wake up.

Like Tolle, Singer writes pretty extensively about how to answer the question “Who am I?” …a question I constantly ponder but feel my answer always comes up short. I am Mary Gelpi. Well no, that’s a label given to me by my parents. Take it away and I’m still here. Who am I? Who is the Self? It was more poignant and enlightening to hear him explain who we are not. Some we’ve been over before. Ready? You are not your thoughts. You are not your emotions. You are not the things that happened to you. You are not a gender role. You’re not even your personality. And here’s the big one: You are not that voice in your head. In fact the journey to discovering your self (which is who you are) involves the attempt to eliminate that voice. In other words: telling it to SHUT. UP. And in the meantime if you can’t get it to, DON’T LISTEN TO IT. For the love of GOD don’t listen to it. Think how many times that voice in your head has been wrong…a lot. But we continue to reach out to it for advice and guidance as though it were an intelligent shrink. It’s not, it’s noise. Just so we’re clear, I’m not talking about voices plural in your head. That’s another disorder altogether and we don’t have time for it. I’m talking about the voice in your head that is constantly chattering. If you stop reading this right now and look around the room, just wait a few seconds and listen. It will begin talking. About anything. Stupid things. Funny things. Memories. To -Do lists. It’s noise. It’s a lot of noise that isn’t really propelling you in any direction on your mission. This attempt was among the original purposes of things like meditation and yoga. It wasn’t to pray or to exercise–it was to find inner stillness, the center. The center is where “You” reside. Behind the chatter, judgments, and noise is your soul or spirit, or whatever you’re comfortable calling it. It’s quiet there. It’s the part that doesn’t die. It’s the center of your consciousness, or what Zukav called The Seat of the Soul. (Also, another awesome book) So this is how the book begins; with the search for the self and a map of where to go to find it. Once you’re able to pull back the curtains on all the things that don’t define you, you begin to feel and hear the real you. Your higher self. Perhaps he puts it most accurately with this definition: the simple awareness of being aware. Or..You are not the thinking mid; you are aware of the thinking mind.

“When you contemplate the nature of Self, you are meditating. That is why meditation is the highest state. It is the return to the root of your being, the simple awareness of being aware. Once you become conscious of the consciousness itself, you attain a totally different state. You are now aware of who you are. You have become an awakened being. It’s really just the most natural thing in the world. Here I am. Here I always was. It’s like you have been on the couch watching TV, but you were so totally immersed in the show that you forgot where you were. Someone shook you, and now you’re back to the awareness that you’re sitting on the couch watching TV. Nothing else changed. You simply stopped projecting your sense of self onto that particular object of consciousness. You woke up. That is spirituality. That is the nature of Self. That is who you are.”

There was one chapter that I re-read a few times, because it really challenged my notion of happiness. It asked this question, which I find myself constantly asking: Is happiness a choice? I have always believed that we are susceptible to our circumstances, therefore happiness isn’t really a choice because we aren’t in control. We can’t help it when bad things happen. But Singer absolutely disagreed with that, and I’m pretty sure he beat me. Just because we aren’t in total control doesn’t mean our happiness isn’t in our hands. If our happiness isn’t up to us, who is it up to? Other people? Circumstance? Conditions? No wonder we’re not happy! You can’t rely on anything or anyone else to cause your experience of happiness. It is entirely up to you. If you make the commitment to be happy, it is to be unconditionally happy. But, that means acceptance of the present. That means erasing your version of what you think your life needs to look like in order for you to be happy. That’s something a lot of people don’t want to give up.

I know what you’re thinking: What if my family dies in a plane crash? What if a bird shits on my head on the way to work? I can’t help that! Of course there will be challenging events in your life, you already know that or may have already experienced them. It doesn’t mean you don’t grieve appropriately and process the hard times. But it also doesn’t mean that you stop, that you can’t be happy again and continue to live a beautiful life. (Just ask my mom, she was widowed twice, but has once again found happiness.) That’s part of the commitment. You have to accept what happens in the present, deal with it accordingly, and release. Keep going. There’s no hanging on to the past allowed. It will never change by you clinging. There’s no cringing about tomorrow allowed either. You’ll deal with tomorrow when tomorrow comes. And think about it. Does you reacting and getting upset and yelling change the fact that a bird shit on your head? No, it doesn’t. Clearly our reactions are not only silly, they’re unintelligent. They serve no purpose. They’re just noise.

Your definitions of desirable and undesirable, good and bad, all come about because you have defined how things need to be in order for you to be okay. We all know we’re doing this, but nobody questions it. We think we’re supposed to figure out how life should be, and then make it that way. Only someone who looks deeper, and questions why we need the events of life to be a particular way, will question this assumption. How did we come up with the notion that life is not okay just the way it is, or that it won’t be okay the way it will be? Who said that the way life naturally unfolds is not all right?

This is still a challenging notion for me to process, but I know it’s right. This is not to say that making unconditional happiness your mission is easy–it isn’t. It’s probably the hardest work you’ll do. But I’ve decided to take this mission on. I certainly have the time, don’t I? Maybe we all do. But we fill it up with a lot of stuff. A lot of Kardashians and O’Reilly Factor and arguments and anger and work and chaos and noise. I think it’s time to slow down. Time to go IN, not out, and find that little nook where our soul is, and try to please it. What more important work could there be? Chopra says that this is a recreational universe and that we were meant to have fun here. We weren’t meant to suffer! So I think it’s time to play. Today is August 22nd. It’s my dad’s death day. Death birthday? I wonder if they celebrate the day you die in Heaven the way we celebrate birthdays here. Anyway, my dad was one of the happiest people I knew, and that’s what everyone else had to say about him–How positive and kind he was. This book reminded me of him and his constant disposition of joy, happiness, and love. I’m going to start my work toward consciousness and inner peace with him in mind and this book as a guide, or at least a solid starting place. I highly recommend The Untethered Soul if you’ve been searching for a deeper purpose or listening for a higher calling and need a little help getting started. This is a really good road map to begin with.

My favorite line from the book: It is actually possible to never have another problem for the rest of your life.

Health, Happiness, and Real, Tangible Books.

*My favorite underlined phrases from the book. :)

What it means to live spiritually is to not participate in this struggle. It means that the events that happen in the moment belong to the moment. They don’t belong to you.

The only way to inner freedom is through the one that watches the self.

It’s bad enough that your happiness is conditional upon your own behavior. When you start making it conditional upon other people’s behavior, you’re in serious trouble.

It is not life’s events that are causing problems or stress. It is your resistance to life’s events that are causing problems or stress.

If you want to understand stress, begin by realizing that you carry around with you your own set of preconceived notions of how things should be.

Imagine if you used relationships to get to know other people, rather than to satisfy what is blocked inside of you.

When a person is dealing with their own fears, anxieties, and desires, how much energy is left for dealing with what’s actually happening?

The truth is, everything will be okay as soon as you are okay with everything. And that’s the only time everything will be okay.

When I Thought About Adulthood, This Is Not What I Expected

Published on August 16, 2012August 16, 2012 by Mary Gelpi26 Comments

In two days I turn 28 years old.

I’m thinking about that number 28. I’m thinking about the word “adulthood” and whether or not I’ve reached it. The number sounds like it belongs in that category, but my life doesn’t really feel that way. I don’t recall exactly what I thought life would be like at 28, but I know for sure, this is not what I expected. I always thought I’d be married with kids by now. (HAHAHA.) I expected adulthood to be so organized and grown-up and filled with smart people who had the answers and knew exactly what they were doing. But I see now, adults are often lost and they don’t have it all figured out yet either. They still get shit-faced and throw up sometimes. There are still social hierarchies and corresponding dramas. They still make mistakes and are learning their way through it. My mom still encourages me to eat vegetables. And I still fantasize about my wedding day and love Disney movies. There are a lot of things that I thought would be different, that aren’t. And there are a lot of things I didn’t expect to still be doing, that I am…

I didn’t still think I’d be…

*Eating at the kids table at Thanksgiving and other family events. I am wondering at what age I will graduate to the adult table. I’m going to celebrate so hard on that day.

*Sitting on a bathroom counter in my pajamas popping zits in the mirror, or what I think could be a possible zit one day and subsequently wrecking my face.

*Calling my mom with questions when I catch a cold…(which is now just me walking into her room, you know, cause I live with my parents now…)

cold meds — “Wait do I need a decongestant or an expectorant?”

*…Living with my parents.

*Taking bubble baths. Still prefer them to showers…any day.

*Borrowing all my sisters clothes.

*Still getting excited as hell when Christmas comes around.

*Turning off my bedroom light, running lightning fast and jumping into bed so the man underneath it can’t cut my feet.

*Getting questioned about my outfits by my mom. “You’re sure you want to wear that to dinner?”

*Talking to girls about boys and boys about girls. It’s been the same conversation since high school: girls are kind of crazy, boys are kind of dumb.

*Watching The Little Mermaid and singing “Part of Your World” really loudly. Every time.

*Giggle when any of my friends say the word penis or talk about one. It’s shameful. I know.

*Be thoroughly entertained by bubbles. (Especially if Monty is around)

*Having my grandma play with my hair.

*Wondering the meaning of my life. Thought I’d have it figured it out by now..

…None of these things did I expect to be still be partaking in and/or enjoying at 28. When I was in middle school, I remember telling a friend that I wanted to be married by age 22 and having my first child at 24…basically because it just sounded good. I was 12, and stupid. But truthfully, it was an arbitrary goal anyway. When I was young, I thought that was the meaning of life: To grow up, find a husband, and have babies. And maybe it is. Those are still things I want. I hope to marry a best friend and not blow it and I’ve always dreamed of becoming a mother. But now I see there is more to life than that. I think. I actually have no idea. I just know that right now, in this moment, it’s not my time to be a wife and mother. It’s a time for me to get healthy and stronger, to find some certainty, get to know myself a little better, trust myself a little more, and become who I am meant to be. Joseph Campbell says that “The privilege of a lifetime is being who you are” and I think so many things in the last year really threw my identity around and left me slowly piecing it back together, which I will continue to do. I trust that the things I want will happen in time, but I am careful not to put aside happiness while I get where I’m going. I am right here, so right here is where I should be happy. I have high hopes for 28. I never expected that at this juncture of my life I would be where I am, and in truth, this is not what I would have chosen. But the fact that I didn’t choose this, I didn’t seek it out–makes me trust it more. I was headed in a completely opposite direction, and yet here I am. It tells me something else was at work. I am done questioning it. I am done being mad at it. I’m ready for the next chapter. Bring it on, 28!

Health, Happiness, Twenty Eight.

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