Category: Crash

A Little Older Now

Published on 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 ;)

Love You Buddy

Health, Happiness, Hellos & Goodbyes

Lost & Found

Published on by Mary Gelpi8 Comments

But First.. Lost

I don’t remember what I did for Fathers Day 2020. Or Memorial Day or Cinco De Mayo or my brothers birthday. Much of the first half of 2020 feels like one long blur. Like a panoramic photo taken with the camera in motion. This is mostly because I was living what felt like the same day, every day, over and over. Each morning and the fallout that followed felt like an impossibly perfect cutout of the day before.

I can remember specifically the day before Mother’s Day, because my mom, who insists every year that we buy her absolutely nothing (a request that, every year, we reliably ignore) actually asked for a present this time: that I take a shower. Not because you stink, she assured me, I just know how badly you want one.

We both had to laugh at the request. Despite it being a painstakingly long shower that required way more effort than it warranted, and left me out of breath, I delivered. I owed the poor woman at least that much.

For all I cannot remember, the discouraged, scary and exhaustive moments stick out like thorns in my mind. I remember just how much I wasn’t doing–which was a lot. I practically memorized the lines on the ceiling. I remember how much help I required and how much I hated asking for it. I remember the enormity of things to figure out on my plate, and how impossible it felt to get any of it done.

Every morning, I remember dizzily staggering to the door to let Monty out, just so I could turn around and clumsily zig-zag back to bed and collapse like lead onto my bed. That was about as much as I could muster that first hour of waking. Summoning the strength for the crawl I’d have to make up the stairs for a coveted cup of coffee required a mental and physical preparation that you’d give yourself before running a marathon.  Every morning was a marathon.

Once upstairs, I’d sit with my coffee, look at a sudoku puzzle in the paper and haphazardly scribble in a few numbers. Then the post morning crash would settle in like a fog. It seemed like I woke up just to begin a slow decline back to where I started.

Monty would loyally follow me back down the stairs. Back to bed, back to life from inside a window. He’d lay beside me and sleep, but was on all fours as soon as I started to gently kick the sheets off. I felt terrible for the life he wasn’t living, on account of me. I felt terrible in general, for all the things I wasn’t doing. But mostly, in a word, I was simply<em>lost. I felt as though I were floating in the middle of the ocean without a speck of land or answers in any direction. I can’t remember ever feeling so lost.

An exacerbated number of symptoms seemed to swallow me whole, and a new set emerged that we couldn’t completely explain: A strange and unprecedented struggle to take a full breath. To breathe without having to think about breathing. An ulcer that would cause extremely painful episodes— where I’d lay on my left side, eat a handful of Tums and say the Hail Mary until it’d finally subside. I’ve never eaten so many Tums in my life.

I felt so far away from actually living. I rarely knew what day it was, or cared. Tuesday, Saturday, Memorial Day, it all felt like the same stretch of time. It didn’t matter. Time lost its urgency and importance. Sometimes it felt like it hardly passed at all.

Other times I felt I could watch it fly right past me. As humans, of course, we can witness the literal time pass. I’d watch neighbors go for walks and mow their lawns, usually in awe. I watched family bolt up or down the stairs to retrieve something, without a second thought. My aunt Amy’s energy seemed supernatural. Holidays and birthdays would come and go, but I remained stagnant. I did my best to keep up with friends back home, but talking on the phone really exhausted me. There were signs and sounds of life all around me, but so little of it left inside. It’s hard to believe that was just one year ago.

On top of my excessively depleted state, we had moved to a new place–meaning I would require new, local doctors to continue treating me. It meant starting over, and having no idea where to begin when the doctor inevitably asked “So, what brings you here today?” That *task* alone was one of the most psychologically exhaustive and traumatic events in recent memory.

Every part of it was problematic, of course, because ME/CFS is a <em>multi-system </em>disease, meaning it requires a multitude of doctors to address the various issues it causes. It felt like failure, again and again, being rejected by doctors who wouldn’t even agree to see me. Can I blame them? Maybe not. One look at my health records and it’s understandable why the average doctor would scare off easy.

A few of them, including an overly-confident son-of-a-nutcracker, yelled at me. He said the doctors who had put me on pain medicine had actually put me in a Prison. I remember him pointing his finger accusingly straight at me, chastising me as though I were a child who’d done something terribly wrong. I walked to my car shamefully and lost it in the drivers seat for a good twenty minutes after that appointment. I was never going to convince these people to continue to regimen I was on. If that were the case, I was about to begin suffering a lot more than I already was. I felt so afraid of how much worse things could get without the appropriate care. The ulcer flared in response. A wind pushed me out further into the sea. Directionless.

The night after that appointment, I laid awake and replayed his words in my head. It struck me that the guy had it completely backwards. The pain was the prison. The pain caused immense suffering, left me at times incapacitated and unable to do simple things. It kept me indoors. The medicine is what freed me from some of that extremely restrictive pain. It allowed me some functionality and a semblance of livelihood.Some of my energy could restore itself once my body (and mind) weren’t consumed with fighting pain 24 hours a day. How could a pain doctor have such a concept so blatantly reversed?

The worst part was knowing that it didn’t matter. Whether I was right or the doctor was wrong, the battle wasn’t one I could win. He had the power, and my disagreeing with his professional opinion wouldn’t change the outcome. That’s a lot on a patients shoulders. If you’re unable to convince people of the help you need, most detrimentally doctors, you’re not going to get any. I was stuck. Lost again.

That doctor was adamant that a spinal chord stimulator was absolutely my best option—something that both of my doctors at home completely disagreed with. Wasn’t a piece of machinery inserted into my spine just as much of a prison, in the context of his metaphor, as oral medicine? It surprised me that someone who called himself a specialist couldn’t see any of this.

More and more the conditions of my life felt further out of control. I saw life around me, and I felt the tiny seed of my life that once was, but it was all totally buried by layers of circumstance beyond my fixing. The psychological damage was hardest to address, and I struggled to summon the energy it takes to keep your mental health in check.

This is where a little thing called support made such an immense difference in my life. While people around me helped in my search for answers–which on it’s own is encouraging itself–I was constantly offered a hand, a shoulder to cry on, an ear to listen, and extremely positive words. Not out of touch words, but reminders that I was not alone, and in the meantime while I tried to find my way out of the hole, family and friends and extended family were looking out for me. Even if I couldn’t see a way out, people like my mom would gently remind me that we’d always come through in the past, we’d always found our way out of the hole and we would do it again. Even if that meant one day at a time–which is basically the only way to go when you’re in survival mode.

I clung to those small whispers of hope and reminded myself I had emerged out of these hole before. I had to work hard to mentally process each day and not become buried by the story I told myself. It’s very easy to see the world as conspiring against you. I remembered the words of Paulo Coelho: “We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” Despite the strong tendency to mentally unravel, I had to believe those words and sentiments like them. I would see the other side of this, I just had entirely no clue how.

Then again, we rarely ever do.

It was sometime in early June when extremely promising news arrived, thanks to a gargantuan effort on my sisters part that finally materialized. She’d managed to get me an appointment at the Bateman/Horne Clinic in Salt Lake City. This clinic specializes in ME/CFS, meaning I was finally going to see a doctor who I didn’t have to prove myself to as though I were fighting for my life in front of a judge and jury. It meant getting the care I so desperately needed. “July 13th!” my sister enthusiastically beamed over the phone. “You’re in.” 

And just like that, I was found. I could see land again.

Could it be that simple? Well, It should come as no surprise, but it’s pretty incredible what a a doctor who specializes in the disease you have can do for a person. Imagine being diagnosed with breast cancer and being sent to dentist after dentist, each with conflicting advice but all sharing one thing in common: they simply don’t know how to help you. You’re in the wrong territory, and you can almost feel it as soon as you walk in the door. 

Securing that appointment with Dr. Yellman of Bateman/Horne is ultimately what and who is responsible for me being where I am now physically–alive and actually feeling alive. I cannot believe what the quality of my life was just a year ago, and how much progress I’ve been able to make. It only reinforced to me that so much of the suffering caused by ME/CFS is completely unnecessary, because a lot of it comes down simply to access to the right kind of help. Most people don’t have it, and the fact that I can count the number of ME specialists in America on one and a half hands is one big reason why. If the remaining doctors haven’t even heard of ME/CFS, or worse, have drawn the wrong conclusions about it, you might as well be a cancer patient seeing a dentist.

It’s no wonder millions of people are struggling, mentally as much as they are physically, because we’re simply lacking appropriate and accessible resources.

It doesn’t have to be that way, and it’s something I plan to work hard on fixing. To conclude, for now, I should emphasize I am not cured, by any means. It still takes a lot of medicine and methods and monitoring to keep Humpty Dumpty together again. I still crash, battle migraines and pain, and my energy envelope is still not in large supply. But a lot of my health feels like it’s in my hands again, and the rest of it lies in the hands of a doctor who I trust implicitly– not in the guessing-disguised-as certainty from doctors who simply don’t know better.

I will write more on the major things that helped bring me back to life in the follow up. But I just want anyone out there to know who is severely struggling right now, you may be by yourself, but you are not alone. You may be 36 and living in your parents basement (ahem) but your life can still be meaningful and happy. Sometimes it can be hard to keep up your willpower to live when you have to fight so hard for it, and ‘living’ isn’t giving you a whole lot to hang on to. I’m just here to say, hang on. Not only can things change, the way we see ourselves and what’s achievable in our lives can change. All of these things matter. I don’t pretend to cIaim they’re easy, only that they’re possible.

Keep on keepin’ on. We’ll get there.

Health, Happiness, Alive Again

P.S. This young old man says hi…

Hi

This Is Still a Life

Published on by Mary Gelpi5 Comments

Oh hi world, I didn’t see you there. I haven’t seen you in weeks in fact! I’ve been in involuntary hibernation since Thanksgiving. Pardon me, I was knocked out.

This crash has been intense and I’ve been writing my way through like always, trying to understand it better. But this time I tried much harder to accept and approach it without the need to fix or change it. Without “fighting back.” I want to be clear that I’m not writing to answer the question of Why me? I’m not in that stage anymore. So I’ve tried to create a surrendered space to talk about it, where it’s regarded as part of the plan, where there’s no sense of unfairness or despair about it. It’s simply a fleeting, physical state that I’m meant to endure and examine closely among probably many other physical states I might encounter in my lifetime. I’ve tried to adjust my whole response to it, which has been more of a lack of response, or reaction, and more objective observation. Life between stimulus and response. Being sick and being OK with it, not attaching the personal, the story, the woe-is-me. I applied this approach to both my writing and my perception of the illness in real time, which has been interesting and challenging and often extremely helpful.

But I’ve sort of been a tortured artist with the writing–I keep editing and condensing and re-writing. I feel the angst that it’s never quite right, that there’s a concept just on the edge of being conveyed, like a mathematical equation I’m on the verge of solving. So I’ve once again ended up with 7000 words scattered across 3 notebooks, my iPhone, my computer, and one business card. Most of it has been exploring the same topic at different depths, and while some of it is good, I realized it’s just not meant for this space right now. Not to mention, my brain feels inside out lately–I’m a little fuzzy cognitively and I can’t gauge it. I’m either buzzing or stunted. But I’ve continued trying to make my words achieve what I feel inside and what I want to convey, staying very conscious about my intentions,  which are that I don’t just want to write about being sick and my experiences simply because they’re true and they happened. I don’t want to start and stop at pain. I’m well aware of the danger in that. So I’ve been tinkering with these concepts, some of them seemingly contradictory: diving in deep into the experience where I can feel it completely, while also regarding it from a distance where I can see it inside of a larger context–which keeps the illness right-sized. I can recognize it as a part, and not a whole. I’ve gotten pretty close to finishing it, I think. But it’s been arduous and probably redundant and my mind is still spinning, even as I write this now.

Anyway,  I’m going to start from scratch today and try to relax about the outcome. A good friend said not to worry about lengthiness, just to keep writing and trust that if people don’t want to read it, they won’t. That’s so true, duh. Thank you friend, I’m just going to write some broad things out, and whether good or bad, hopefully open up some space in mind for some fun topics, like my exploration of Hallmark and Lifetime Made-For-TV Holiday movies, and also a note about my 12-foot real Christmas tree that refuses to drink water. But it lives on!! Tiny miracles.

My health was already on pretty shaky ground leading up to the Holiday. Thanksgiving  Day was great, ate good food and had some fun reunions with old friends, but it was long and cumbersome. I could feel myself subtly hitting physical limits along the way, but I pushed on anyway. (I include the socializing that happens as part of the exertional strain, even though it’s enjoyable, it always costs me something physically the next day.) It was a Holiday after all, and I could sleep it off tomorrow, I thought. Unfortunately, I was flattened–handed over fully to the illness overnight while I slept. I woke up to the dreary and unfamiliar light of 3:30 pm pouring into my room on Friday. It disoriented me further as I felt an overwhelming weakness blanketing every part of my body, down to my fingertips. I laid there an hour before making a move, and once I did I felt keenly the severity of my condition. Moving was not easy and wouldn’t be for a while. I knew this wouldn’t be something that I could sleep off in a day or two. Shit.

Since then, I’ve been on a roller coaster of physical states, mostly at the mercy of this crash, and life here at the farm has been chaos. For a few weeks I’ve been enduring a symptom I find the hardest to cope with–bone crushing weakness. Spiritually, emotionally, physically, this one challenges me way more than the others. It leaves me the most powerless. There’s nothing to do for this symptom. When it has you, it has you. Its’ demands come in this perverted form of requiring that you do nothing–which is basically the reverse of our instinct in response to a ‘problem.’ It requires that you lay still, it means you’ll need a lot of extra help for things you’d normally do yourself and never think twice about. It means playing the waiting game and not knowing how long you’ll play it, without allowing impatience or succumbing to anger or despair while living through the thick of it. (Those reactions only makes me weaker.) There aren’t pills for weakness like this, not exercise regimens or quick fix solutions. There’s a lot of being stationary, quiet, often remaining in one place or one room for a solid chunk of time. Sometimes it’s a messy room, and you have to let that go. You have to let the dishes go. Truthfully, the whole thing is a crap ton of letting go. You have to achieve cleanliness mentally, because there ain’t no way you can vacuum right now. It means putting off the long list of things you’d thought you’d do, and finding ways to achieve a surrendered state of mind despite the external world around you appearing to unravel at nearly every seam. It touches everything, seeps into every corner, means nearly anything that isn’t necessary in the moment must be put on hold or go in the ‘burn pile’. You have to find a way to remember that despite all the can’ts and don’ts and no’s, somehow you still have everything you need in the moment you think to ask.

The only times I get overwhelmed is when I try to conceive everything at once, or I think of the future, as proximal as the one five minutes away. And the root of this is fear mostly, fear of ways the illness will hinder the things I have to do. Yet the future always comes and I always survive it, the essential is always achieved one way or the other. The non-essentials fade and soon you hardly notice they’re gone. When I stay extremely mindful of right now, tending to exactly and only the task right in front of me, I truly feel fine. I feel positive and at ease instead of buried, powerless. I think, all I have to do is drink this glass of water. I don’t even have to consider what will come after. It will come and go despite my concern. That’s where my navigation of this crash has felt like a small miracle. Maybe for the first time, my spirit has succeeded and carried me through the really difficult times. I’ve often been able to observe what’s happening to me at a distance, without becoming crushed by what I see. Or angry at how I feel. I feel really crappy, really weak, and so I find a good reason to be really weak today. They exist! They just require an adjusted perspective. In this way I’ve had the crash more than it has had me, and that has made a huge difference.

To whom or what do I owe this miraculous capability? Well for one thing, my mom. I should mention it’s not just my spirit that’s carried me, because it’s my mom who has physically carried me. She has tended to my needs when I’ve been incapable. Not to mention that she has a prayer chain halfway around the world dedicated my wellbeing. Just knowing so many people have dedicated even a moment toward healing intentions and thoughts for me is both humbling and energizing. It makes me feel hopeful, and that hope gives way to optimism, grace, surrender..they’re all there, and this situation constantly brings to light the choice I have in how I’m going to receive my circumstances. Whether or not I will accept and recognize all the treasures that lie beneath the hard stuff on the surface.

I believe there are always incredible gifts waiting at the heart of our struggles–and this time I was able to find them at clutch times. They don’t come from me, but somewhere else more eternal. I suppose the gifts materialize when we open ourselves enough to receive them– to the vulnerability that comes with accepting help in the first place. Our silly human egos could easily interpret the reality as I’m not enough. I should be able to do this alone. Blah blah blah. But to simply acknowledge the truth that yeah, I could really use some help right now if I’m able to emerge through this in one piece, the disappointment of need or felt inadequacy melts and grows into a ginormous humbling gratitude in acknowledging that I have help at all. What a reassuring reminder to know that I don’t have to do this alone. So why would I? I have help! It’s sortof like staying in a miserable marriage for 20 years all so you can say with pride that you’ve been married for 20 years. It may momentarily impress people, but you’re the one who has to share a life and go to bed every night with a person you may not even love or like! Sometimes we go after things because we like the sound of them, or the image they create. But the real meat of life is on the inside, in the everydayness of how we live. Not a 20 year anniversary, but how you love and treat someone through the mundane parts of life together. Talking about dentist appointments or discussing an article in the newspaper–how did you speak to one another? Not that you beat or survived illness, but how you treated it day to day and through the challenging times, how you treated those around you, and what you made out of your experience. Make it count? Or just get through it so it you could quickly forget and attach to something else. I don’t know. I’m rambling again.

The realization of some of these things  makes me smile and cry at the same time. I am so encouraged and fulfilled by all the love and help I’ve received, and it’s come in so many different forms, all of them special. I’ve had incredibly healing and inspiring conversations with people I’m very close to, and each one of those talks builds me up higher than before. What a hushed relief surrender is–and a gateway emotion at that. It opens the door to a surge of mindfulness that illuminates grace, friendship, love, thankfulness, all the good in my life that I’m blinded to when I’m distracted fighting something I most likely can’t control.

It’s difficult to articulate, but sometimes I zoom out from my life, like a camera zooming out into space with earth at the center, becoming smaller and smaller. When I do, lately I see a small figurine of myself living inside the palm of two big porcelain hands cupped together, like that of a statue. I see that I’m being held, and in the image, I feel watched over and protected, both from a far off place and a space deep inside. What an amazing treasure it is, to reach out your hands in a time of real need, and to have someone/something grasp them on the other end. For the most part, it’s my moms hands which have reached back. It’s she who provides. Her help, love, and attentiveness is immeasurable. As equally as my spirit, she has done the labor of care that being sick this way requires. And it’s not an easy job, though she’d never let you know that.

No doubt this has been painful and overwhelming for her. She has said that seeing her child in pain is far worse than having it herself. I’m very aware of this, and it’s even more reason that I feel the need to voice out loud what has been burning true through all of this– That it’s all OK. I am OK. I’ve felt strangely at peace through the tough stuff, and I know it’s on account of her and other loved ones in my life who’ve given so much of themselves just to try and lighten the burden. I am continuously strengthened by these acts. I want to assure her, because I feel it in my weak little bones, that this is all leading up to somewhere great. I’m certain that I am just where I am supposed to be. I don’t feel like any of this is random or cruel, but that it’s the work I am meant to do right now, and I accept it with fullness and eagerness. I know there is greater reason and payoff that we can’t see yet. But knowing it’s there waiting helps to greet all these “stresses” with an assured openness. Getting there requires work, but it’s work that I’m capable of; important work that doesn’t require a physically fit body in order to happen. It will be beyond worthwhile, if we can only get through this moment. Then the next one and the next one.

And the good news is we can! I can, I have. And I will continue to. Her enormous and powerful love has helped put my inner self on a plain where I am capable of moving forward and growing from this. For that I owe her…well, everything. But I know the only payment she would want is the certainty that I’m not only OK, but that I’m happy and that I haven’t forgotten the novelty of what it is to be alive. And if you’re reading mom, I haven’t. I experienced  incredible moments, inspirtations, and laughter, often alone with Monty in my messy living room! This is it right now, and I’ve found immense joy in it anyway. Like you said, This is a life, too.

I know this doesn’t solve the many problems we have right now. There are so many other things that haven’t gotten the attention they need, important tasks that had to go un-done, financial burdens that we have to figure out. And most of this is on account of this all-encompassing illness that touches everyone around me, especially her. But I do feel that soon things will change for the better, that we’ll get help where we need it, we’ll complete everything that’s gone undone. I know one day we will smile with relief at the memory of trying, chaotic times like these, where everything was falling apart. And yet I know these are what will become the foundation for some amazing things to come. When they do, incredible things are going to start happening. I can feel it!

For now though, a breath. A glass of water. Rest. Feed the dog. Rest. Send a text. Pills. A breath. Rest. Small tiny moments. One foot in front of the other. I feel really weak today and I can’t do a lot physically, so I’m going to find a good reason to be weak today. Writing, reading, listening compassionately to someone. Photographing my dog because I love him so much I smile just watching him sleep. So many amazing things require so little of us physically. Navigating each moment with quiet consciousness, I know not that everything will be OK, but that it is OK now. And I revel at the momentary freedom in that. I’m grateful just to glimpse such a powerful truth. Today is heavy and rainy outside, there are dishes in my sink and I’m too weak to do them. But I’m listening to Christmas music, I’m admiring my ridiculously huge Christmas tree and the soft nostalgic light it casts on my living room. And I’m reassuring Monty who is staying unnaturally close to me (following me into the bathroom and squeezing between the toilet and the wall) because it’s thundering outside and for him this equals imminent threat of death. This is my life today, and many days, and I’m living anyway! I’m enjoying it. I like the rain. I like quiet days. I also like singing obnoxiously loud to Mariah Carry Christmas songs. Monty and I, we’re fine over here. A sick life, but still a life. Regardless of physical outcomes, All will be well. But even better, all is well now.

Thank you, all of you, who have kept my spirit so alive! What all of you have contributed in your own small ways matter immensely to me. I feel extremely connected to the world and am humbled by the love I’ve received. I’m excited for the ways I plan to pay it forward. 

Health, Happiness, and This Life, Too.

 

Haikus From A Crash

Published on by Mary Gelpi4 Comments

Spent Saturday night
Forgetting. Acting my age.
I’m young, I can dance.

For four nights, five days,
Never left my best friends bed.
(Hospitality.)

This tin-can music
On hold with the pharmacist
Tries to get me down.

Robot voice thanks me,
Your call is importan–Click.
Avoid urge to die.

Doc: Where is the pain?
Head, Muscles, Joints, Skin. Constant.
Doc: Are you depressed?

Congratulations!
Didn’t go to med school but,
I’m my own doctor.

The universe yawns-
Striving for life I don’t have,
I’ve become Facebook.

I cried when the maid
Killed the spider in my room.
Alone, things get weird.

Can’t forget him now–
Broke up just in time to find
Ringworm on my thigh.

A measure of will:
No one needs you anymore
Do you feel alive?

Monty at my side
Asks for nothing the whole day
Meet visceral love.

Tail wags in his sleep,
Watch his belly rise and fall
Love, you make me weep.

If Haiku rules were
Seven-Five-Seven instead,
Would I still be sick?

Bzzz. Thud. Bzzz thud bzzzz
Angry bee against the door
None of us get out.

Sad signing the forms
Which say I’m incapable.
BUT IM SEXY YALL!!!

Day 6, I’m alive.
Under water asking if
Dancing was worth it.

I should know better,
But I remember dancing,
Don’t remember price.

Health, Happiness, and Haikus.

Under the Water.
Under the Water.

*Shout out to Newman for haiku inspirations and continued decency in a perverted world.* 

Living Masters

Published on by Mary Gelpi17 Comments

Finally, yesterday, the teeniest tiniest flicker of relief. I felt it. Though incrementally small, it was the spark suggestive of an end, or at least of an improvement. It’s been a very sick few days. But yesterdays glimmer of improvement brought me to the surface where I could breath again. It wasn’t major, but it was enough. Today, another slight improvement. I actually left the house and went to the pharmacy. That’s what we call progress people.

I don’t know what exactly caused this crash. The travel, new Miami germs my body couldn’t handle, the woman with the wet cough on the plane? Who knows. It doesn’t really matter I guess. I could feel something in the works throughout the trip. I felt rough most of the time, but, I still enjoyed my stay. Miami is nice and my family rocks. My brother Nick is another mentor of mine and always encourages my creative endeavors. He’s someone who materializes ideas instead of just writing them in a notebook, which is what I do. I envy his work ethic and it was nice to be around artists at work. I worked through some writing problems and we’ve begun a side project which I think will be great. It was nice. Look, I even caught a fish.

40 pounder
Unfortunately I think my brother later used this fish as bait.

Huge right? Of course I sort of declined at the end of that day and into the last few days, until I returned home Thursday. By that night I crawled into bed and as I pulled up the covers, the invisible monster went to work. I could feel it creeping over me, up through my limbs and under my fingernails. When I woke Friday morning it had swallowed me whole. I was submerged. The next three days were spent in bed in a dream state with intermittent stints of wakefulness. I’d awake for brief periods, feed Monty, feed myself, then dissolve into dream world again. Unfortunately I could feel the pain on both sides. In my dreams I’m looking for pills and can’t find them. Or I can’t get their lid open. That happens in real life too.

It can be disorienting when you spend more of your time in dreams than awake. Every time I awoke I  had to readjust to the surroundings, remind myself where I was. Everything was hazy and I felt weak and sedated. My body was out of juice; every move I made felt enormous and taxing. It’s a strange condition to be in, but that’s how it goes in a crash. All you can do is rest and wait for your body to come back. Luckily, Monty barely left my side the whole time. Each time my eyes blinked open, I’d spot him sleeping in some ridiculous position. As soon as I stir he’s on all fours, ready to go. I hate not being able to play with him more, but he sticks by. Sleeps when I sleep, eats when I eat. His loyalty astounds me, especially when I’m sick. On Saturday night I had a nightmare that I couldn’t wake out of. When I finally came to, Monty was on his feet, panting next to the bed. I could tell he’d done something, made some noise maybe that woke me up, though I don’t know what. He is my hero. For reals.

By Sunday I was overwhelmed. Everything hurt, every movement was laborious, and any sound above a medium hum felt like a knife through my ear. Just taking a deep breath was hard. Tears poured down my face and I couldn’t say why exactly, except that my thoughts were racing and I felt like I was sinking. My emotions often get erratic during a crash for some reason. I think parts of my brain get overwhelmed. It felt like synapses were firing at rapid rates but were incomplete. Thoughts would come fast but unfinished. I could barely talk straight. I didn’t know what I needed, but I needed help. Enter my mom.

Through the tears I tell her I think I need to eat. OK, she says, and just her voice begins to calm everything down. One thing at a time, she says. Start with the apple. I try to let go and redirect my focus on what’s in front of me: an apple on a plate with almond butter. All I have to do is eat it. I can do that. Cool. The tears come and go. I tell her I’m afraid and my health feels out of control. She listens and validates my discouragement, but doesn’t let me wallow too long into despair. Ever so gently she leads me out of the dark of my own mind and encourages me to keep going. I find myself clinging to those words, scribbling them on paper and my dry erase board. So I try, even though my insides are yelling Stop. Press restart. We’ve got a faulty body here. I sleep at their house on the couch because I’m too exhausted to walk back to mine. I’m thirty years old and my mom ‘tucked me in.’ It’s official: I’m growing up in reverse. Monty sleeps on the love seat next to me. The next day is still sick, but somehow better. I don’t feel buried by it now. My mom has worked her magic again.

The illness continues to teach me humility and gratitude. To find grace through the crappiest of times. It’s still difficult to admit when I need help, but I do. And I’m lucky to have people who provide it. My step-dad bought me groceries, and threw the stick for Monty when I wasn’t able to. I get emails from people who are sick with this and other chronic illnesses but their families don’t believe them or don’t understand, and they’re left to fight it on their own. Reading it is heartbreaking. I don’t know how anyone could survive this illness alone. Some of them say the blog has helped their families understand what they’re going through, and I always told myself if this even helped one person, it was worth the work. I hope I can do more. I wish I could make them know they’re not alone, or crazy, or inferior; all things you feel when you’re sick this way. I know we’re strangers, but we’re human beings and sharing something similar, so if you’re reading this, you’re not alone brother! But sometimes it feels that way and life gets heavy. I get it.

I am trying to be careful about my writing. I always hesitate when sharing an account like this because I don’t want to get stuck in a narrative of how hard life is without going further. Life is hard, but people don’t need that reminder. Life is harder when you stop at the pain. I try to look at the pain as the beginning of something better, not an end. Because life is also amazing, even in times of turmoil, but you have to dig deep, past the muck. It’s so basic, so cliché, but I have to examine both sides or I’ll turn into a blogging version of that Kathy cartoon. Oh God, the horror. It’s a fragile dichotomy, writing this blog. Half of me is sharing what feels like death, but the other half is screaming I’m OK! Everything is fine! Because I am OK. I’m here in my favorite V-neck shirt writing at my desk. But the schism is there and I have to be conscious of both sides. Writing isn’t a way out of it, it’s just a better way through it, if I do it right. I write better when I get creative with my circumstances, until I eventually outgrow them. Otherwise the conditions take over and despair takes the wheel. And that’s a lot of what this whole project is about; becoming more than a person to whom things happen. The poet/writer Paulo Coelho wrote this in The Alchemist,

“We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” 

I love this idea and believe it wholly. A lot of things are at work that we don’t always have access to. It’s just easy to forget when shit hits the fan. Well here’s our reminder. 

In other news, it finally happened: I dropped my phone in the pool. Idiot! I watched it fall in slow motion, with that split second of heat on your neck where you think you can reverse time and take it back, but you blink and there it is; Submerged. It’s now drying out in a ziplock bag with rice, so I’m off the grid! I’ll try to use the 48 hours wisely. I’ll keep resting and reading and writing. And hopefully by Christmas I’ll be better and I’ll have found the answer to life. Seems doable.

Anyway, this post is for my mom, who dug me out of the depths once again. She is my mentor and not only guides me out of the darkness but nudges me to be better, to grow stronger from struggle and not be defeated by it. It’s true, if I weren’t sick we wouldn’t be living so close, and I would’ve missed out on a lot of important wisdom that I’ll keep forever. All for free! Thank you for carrying me when I need it but also challenging me to become more than what’s happened. You’re a master and it’s made all the difference.

Health, Happiness, Masters

I Wanna Get Better

Published on 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 :)

Unwell, Unafraid

Published on by Mary Gelpi16 Comments

I know this feeling all too well.

A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well.  All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it. It’s the best kind of fitting in. Someone asking you how you are is nothing more than a pleasantry and that’s how I like it. No reason to sugarcoat or think twice about the answer. I’ve yet to figure out a response that feels right, so mostly I lie, and I’m a bad liar. I cave easy. But this is one I get away with. I suppose it’s why anyone lies; it’s just easier. It feels good to give an answer that people want to hear. It keeps a hard reality in the blurry background, and that’s how I like that, too.

On day 4 of my crash, I’m laying on my moms couch in the office. My mom comes in and asks if I am still as weak as I’ve been. I quickly reply ‘no’ and that I’m feeling at least a small bit better. It’s a lie. I can tell because saying it out loud causes some kind of turning in my gut; where the truth would’ve provided solace maybe. I feel just as bad if not worse than yesterday. I’m short of breath for no reason and I’m weak down to my finger tips–peeling my banana earlier was way harder than it should have been. I’m dizzy every time I move. I get waves of nausea that are as close to puking without actually puking as it gets. But I lied. I said I was better. I’m left wondering why I did that. I’ve got some ideas.

Not having to think for very long, the answer came. It’s so easy: I’m afraid. I’m afraid that it could mean what it’s meant before. That it won’t go away. That I could be stuck this way the rest of my life. That I’ll never be able to fulfill all the dreams I have or achieve my notebook full of plans and ideas. I’ve had a one day crash turn into a week turn into 6 months. I’ve watched my life turn inside out and be emptied of the good parts. So often it feels like I’m watching it all happen from the outside. At 26 it felt as though the narrative of my life shifted from 1st person to 3rd, and that’s been hard to get used to. I said goodbye to things I wasn’t ready to. The illness took me over and then swallowed everything in my vicinity too. It was hard. It is hard. Some days, some weeks, some months better than others. It’s just been so “good” the last few months. It seems every time I crash I have to confront everything all over again. I think it will be that way until I fully accept and surrender to what my life might be. I already know the challenges I face, I also know it could be a lot worse. That in the end I have everything I really need. And while my life could be bad like I fear sometimes, it could also be good. great even. And the reason I need to let go of that fear is because what my life can be is up to me. Sick or healthy.

I have to remind myself often that a lot of this is out of my hands, which I have to be very careful with. That kind of acknowledgment requires perspective and reflection and it should never be an excuse. This is surrender, it is not giving up. They are two different animals and mixing them up can heavy the suffering. It doesn’t mean you call it quits and accept that life is shit. I’ve had to draw a lot lines between surrender and giving up and so often I’ve gotten it wrong. I’m ready to start getting it right. Apart from what we’re doing in our lives, the way in which we examine them makes all the difference in its joy or sadness. You’ll know whether you’re surrendering or giving up the same way you’ll know whether you’re telling the truth or not: one feels like relief, the other like defeat. One has roots in reality, the other in fear of it.

I have to stay aware. I have to remain conscious about the choices I am still free to make, and remember that I do still play a part in all this. Of course there are many parts of my life I would change were I able. But how I go about living the rest of my days is in fact up to me. Actually, it is only up to me. Will I choose to react? Will I choose to be a victim? Will I make excuses for myself to justify poor decisions? All of these are possible. And every day I wake up I can think of 100 reasons to choose a darker path. To stew in my own sorrow, to stop trying, to be defeated by something difficult, as if no one else alive is faced with their own challenges. Some that make mine look like a splinter in my pinky. The opportunity to go another route will always be there. You’ll get in trouble thinking that if you choose one good thing, you won’t be tempted by so many other bad ones. You will be. Everyone is, in their own way. Every person has demons to manage and a truth that isn’t easy to sit with in silence, but truthfully this is half of being alive. It’s why you’re a human being and not a turtle in the mud or an insect reacting to stimuli; flying toward whatever is bright.

The funny thing is, what most humans want is control. We like to think we make our own lives and everything is up to us. I disagree with that notion on a few levels and agree with it on others. I know for certain we play a huge hand in our own happiness. But when we get dealt things we didn’t plan for or wouldn’t have picked we feel like we’ve been royally screwed. Robbed. So often I fail to realize it’s not about choosing my hand but how I play the one I got. That has been and always will be up to us.We get to choose how we talk to people and who we surround ourselves with and what we’re going to give our precious energy to each day. What mark will we leave? What will we contribute to the world we’ve been given? Scientists and theologians continue to debate whether we chose to come here or not. Regardless of whether we’re the product of an all-knowing creator or consciousness or the random assimilation of atoms and space, we know for certain our time here is temporary. Loving or hating our life won’t change whether it ends or not. It will end. We don’t get to stay forever. We don’t get a say so in some of the things that were done to us. Every adult has a childhood. Every child had parts that weren’t fair or right. At one time or another, we’ll question every truth we’ve held onto and every drop of optimism we’ve carried. At times we’ll have to fight for our purpose, even if it’s just to get out of bed and make yourself eggs. (That was mine today. Yeah!) We get to choose what we do next with what we have. Will I find a reason to be happy or a reason to be mad? Because I will find both. I can always find both.

I have plenty of reasons to be both. But the last thing I need is to be afraid of what is real. Even if what is real is scary. Life is scary stuff dude. Have you been outside lately?! Even in small doses. Sometimes I have to chop it up smaller and smaller and smaller until it’s digestible enough for me to get out of bed and face the world and find my path and keep going. Doesn’t matter that I know where, so long as it’s forward. The truth moves us forward where lies keep us in the past. Surrender smooths the road for us to navigate with eyes anew, where giving up halts us, traps us in static pause.

I have no idea why even small truths are important, maybe for the reason that even small lies can cause damage. My small truth is that today is the 5th day in a row I feel terrible, and I live in fear that I won’t emerge from it. That the illness has the steering wheel and I’m passenger side. I fear what all the pills I take is doing to my insides. I fear I’ll live with my parents forever. (Sometimes I think they fear it too :) And all of these things are O.K. There’s no need for me to sugarcoat it, lie about it, or fall dramatically somber in acknowledging it. In fact admitting the fear almost instantaneously makes it smaller. Takes away a little of its power.  Today I’m unwell, but I’m also unafraid. I expect to get better. Being quiet and afraid won’t rid me of what I fear. So perhaps better to be loud and honest. Life will go on regardless. What I want to be assured of, and what I imagine so many of us want to be assured of, is that we tried. That we didn’t take being alive lightly. I know I don’t live all of my days like that, and that’s a change I’m working on. Imagine if we could all live in our truth, whatever it is, and embrace each day as though we’d never lost. What might our world look like then? Our lives? Our Facebook Statuses?!

This has all stemmed from one small lie I told one afternoon that followed me around all night and morning. Funny that me confronting a grand truth began with a dumb little lie. But something about it makes me feel in my bones that these things matter. Sometimes I see and feel in myself and others that we’re starving for things that matter but are constantly being fed things that don’t. I don’t know how to begin a shift, but I know to make changes on a big scale, we must first begin with ourselves and live honestly. It’s our job to dig deep within, listen to our intuition, and be human for one another, not at one another.

I’m still tying all of my thoughts together. Still looking for answers and often coming up short. Sometimes I can feel the strings of my reality ever so slowly weaving together and making something whole from many mismatched parts. That’s what so many days feel like. Raking through the muck and finding the good parts. Then making sense out of the bad stuff left behind. The fear and pain and anger, there’s a lot of answers in them.

I’m sharing this beginning with anyone reading. (All six of you)  Maybe somehow, it’s something we all work towards together. And whether this is just a stepping stone or a small premise for something bigger, it doesn’t matter. This can be the start of something new, even if it’s very very small. And I can look back at this oddly cold day in January, where besides the frozen leaves outside, it would have been business as usual. But it wasn’t. It isn’t. Where a small lie would have left me afraid, a tiny truth burrowed out instead. And in my repetitive life, maybe this is the start of something new.

Health, Happiness, and I Ain’t Scurred

I ain't scurred
Just Kidding I’m Still Scared

Dog Spelled Backwards

Published on 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.

 

The Day I Tried to Punch a Fly in the Face.

Published on by Mary Gelpi11 Comments

I could tell you a lot of things about my life right now. That once again it’s 4 am and I can’t sleep. That once again Monty has gas but I love him too much to kick him out of the room. That the Chinese doctor told me not to take my pills today and so I haven’t. I feel the effects of it. I have some fear about it. Some hesitation. But I have the same fear of a life dependent on pills, so either way it’s fighting demons. I don’t mind being awake when the world is sleeping. So many days I’ve missed out. Slept through. Called in sick. Night is my time to take life back. I could tell you my music of choice at night when I can’t sleep–lately it’s Tchaikovsky (Swan Lake) but tonight it is Radiohead (In Rainbows) and I’m deciding whether to keep squinting hard and trying to force sleep or to give up. Give in. But since the only cure for insomnia I have found is waking up, I give in.

When I open my computer to begin, a fly immediately lands on the screen, undoubtedly drawn to the light of the monitor. When I scroll the little mouse arrow under him, he jumps. Flies away a second. Then he comes back. I play “tag” with my computer mouse and a fly for probably way too long and smile at this activity. What makes me smile more is that we have this big joke in my family that my dad would be reincarnated as a fly. He used to do this hilarious impression (often at fancy dinners, with no shame) of a fly, rubbing it’s little legs together the way they do. Half of the people laughed because it was funny and the other half probably laughed out of discomfort or something. He was such a nerd. This was his dinner entertainment. I wonder if this fly I am playing computer mouse tag with is my dad. Then it starts rubbing its spidery little legs together the way my dad used to when impersonating them and I smile bigger. Because these are strange anecdotes at 4:14 in the morning and I’d prefer to be getting sleep. But then again I would have missed the fly. The fly and all its mystery.

The Fly.

There are a lot of fly stories concerning my deceased father. Like at his funeral when my sister started crying and one landed on her shoulder. Most people would call these things silly, coincidental, random or meaningless. And that for sure is the easier belief. Faith requires energy. But it almost seems like doubt steals it. Sometimes it appears more attractive to trust nothing and be skeptical of it all. But there are incredibly real moments in my life, where explanation just doesn’t work. It’s beyond science. It’s beyond religion. It’s more along the lines of intuition, instinct, and of course, an awakened state of consciousness. It is really amazing what we can see and access when we are awake. But I think we’re mostly sleeping.

In early September I was  beginning to really resent my situation. I was physically feeling worse and worse. Everyday activities were becoming harder and I was having to rely on people more than ever. I was beginning to resent the fact that I needed help, which is, insane. I should have been thanking every star in the sky that I had help, but I was too busy being upset that my life didn’t look like what I wanted it to. I was really irritable one day. I was short with everyone. I felt angry, sad, and misunderstood. I needed help but I didn’t want to ask for it, so I resented those who tried. Fed up over something stupid, I took Monty on a walk. We walked up “the hill” that presumably was what put me over the edge after walking up it once a day for a week and then facing a monumental crash. Anyway, at the top of the hill was wide open space for Monty to run and for me to think or yell or curse. On that day I let Monty run while I unloaded some words at the universe. I cursed and yelled because no one could hear me. Except maybe some cars that drove by slowly, and at least they had a story to tell later. (Yeah this girl was flipping off the sky and cursing about fibro-vagina or something?) Pretty soon, this fly landed on my face. I swatted it away and it immediately landed back on my nose. Again I swatted. Again, it returned. I was in such an aggravated state, I wanted to punch the fly in the face. I remember thinking those exact words: I want to punch this fly in the face. When I say the fly would not leave me alone, I mean it. For at least five minutes I let Monty run, let my tears fall, and relentlessly swatted away this fly while also trying to punch it in the face. As if that’s even possible. Fed up, I told Monty that due to a CERTAIN INSECT THAT WILL NOT LEAVE ME ALONE, we had to walk home. Monty looked at me like the psycho that I was, and then we started back down the hill. The fly followed.

I started to cry. All I wanted was peace. I was so upset and felt so alone. My life felt out of my hands and I had become completely reliant on others. I’m always the guest on someone else’s couch. When will I sleep on my own couch? I’m always going to be sick and helpless. These were the thoughts that were circulating. As you can see, they are pretty negative. They weren’t helping me. They were the cyclical mental thoughts that dig you deeper in the hole. The fly continued to dart at my face and I continued to flail my arms in what I think were actual attempts at punching it in the face or more simply, just killing it altogether. But to passers-bye, dear God, I must have looked insane. Finally, near our complex I began to calm down. It finally occurred to me; our little joke about my dad returning to earth as a fly. As I remembered I yelled “Seriously dad this is NOT the time!” So now I was punching the air and talking to a fly which I was beginning to believe was my dead father. Want to be friends?

The truth is, that was the time that I needed to be bombarded. The most effective thing that fly did was make me stop. And examine. And get to the truth of my experience. I had been feeling so alone. But the truth was I had love from all sides. I had family to carry me when I couldn’t do it on my own. It was just time for me to humbly accept that not everything was going to be on my terms, and that’s OK. You can still be happy down another path. Once you stop fighting it. That fly relentlessly flew at my face for at least 10 minutes, while I relentlessly tried to kill it. But by the end it had gotten through. Something told me, something from inside, that fly was a reminder. That life wasn’t over. That I wasn’t alone. That I shouldn’t be so irreverent about living. I was still here. Still breathing. And so I still had purpose.

I approached our front door, now smiling at the events of the last 15 minutes. I had tapped into a different energy. A better energy. All thanks to that really, persistent,  annoying fly. Whoever he may be.

Health, Happiness, The Fly.

Good News.

Published on 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.

A Shit Show.

Published on 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.

Day 1. 

Day 2.

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 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.

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.

One Thing, Once a Day.

Published on by Mary Gelpi9 Comments

I love getting late birthday presents in the mail. Wait, I love getting mail period. For one thing, I think the art of letter writing is becoming extinct, so it’s always pretty special to get something written in one of a kind hand-writing, written just for you. Dear Mary… Anyway, late birthday presents are like those blooper scenes they show during the credits of a movie you liked. Just when you thought it was over–bam! My brother Nick and his wife Estee sent me two new shirts and a skirt and a necklace with a hand-written card, the best! And my sister brought me shopping at Nordstrom. Her and Keegan have kind of adopted me as their 28-year-old child. Keegan even sent me to my room yesterday. I also unpacked my suitcase at their house two weeks ago, the first time I’ve really not lived out of my suitcase since February. All my siblings are like extra parents, each pitching in to help in their own ways and I am really thankful for that. It’s easy for me to forget that my situation could be a lot worse. They have all encouraged me to visit them, and that is a real gift. Anyway, I love shopping and I love new clothes, but it has turned into such a silly thing for me to love, mostly because I never wear normal clothes anymore. I never really go anywhere and I hardly see people besides Monty and my family. My uniform has evolved into leggings and t-shirts–every guys fantasy.

Last week and all weekend was a sick week. Like a sick day, but you know, times 7. I once wrote that I was the mayor of Migraine City, but I am upgrading myself this week to Governor because my head is super angry about something and apparently wants the world to know. Here’s your shot head, let it all out! Every day I keep telling myself I will get dressed in my new clothes and I will go somewhere and I’ll do my hair and makeup and look like someone who has her shit together. But, that has yet to happen. “Tomorrow” I tell myself. Then the song from Annie starts playing in my mind and I bet my bottom dollar that tomorrow there’ll be sun, and I will go out in it! Since I’m in Cali, there is always sun, but when you have a migraine, it feels like if you were to go outside under that bright sun you’d start melting like the witch from the Wizard of Oz. Anyway, the migraine cycle continues, but why am I talking about migraine cycles? I’m even boring myself.

When I’m in the throes of a sick week, I can start to get down. And also start to go stir crazy. So there are a few things I do and a few things I don’t do. Maybe most importantly, I do not watch TV during the day. There is just something undeniably sad about daytime television, and sunlight coming in through the blinds..maybe reflecting off the TV screen? Yuck. The only time I don’t find a sunlights’ reflection on a TV screen depressing is on the weekends when we’re watching football. Exceptions to every rule.

First, I keep a book on hand and I read. I swear it’s like I’ve discovered the joy of reading only last year..at age 27. Pretty ridiculous since I discovered the joy of writing at around age 9. I feel like I’m catching up on all the years that I began books and never finished them. I always associated reading a book with homework, something I had to do. It never felt like I had a choice in the matter. As soon as book reports became part of my schooling in 6th grade, it became my goal to see how little of the book I could read and how high a grade on the report I could get. Unfortunately, I work really well under pressure–so the night before it was due I’d skim through the book, find the important parts, and write a flowery report. I almost always received A’s on them. I was actually proud of myself for being able to complete the work this way! What an idiot. Anyway, now that I have really experienced what getting lost in a book is like, I feel like I have years of catching up to do. So that’s partly what I’m doing. Especially because it’s not sad at all to read while sunlight is coming through the window. In fact it’s the most fun to go outside and read. Monty and I had been going to the park daily, but I crashed mid-week and we haven’t been back yet. Anyway, right now I’m reading Wild by Cheryl Strayed. A true story about a woman who lost her way and decided to hike the Pacific Crest Trail by herself, with no experience. Truthfully, it’s a little difficult to read because she is in a lot of physical and emotional pain so far, and I like reading to carry me away from real life, so in that light it’s not been as fun to read as Gone Girl but I’m just about 1/3 in, so I’ll see how the next 50 pages go.

The second thing I do is create something. It can be anything from a four line poem to a line drawing. The goal is not to create a masterpiece work of art. The goal is to let your soul do some talking. Sometimes what you make will be crappy and sometimes you’ll surprise yourself. But the thing is, now no matter how sick or worthless I felt today or the fact that I never got dressed in real clothes, at least when someone asks me what I did today I can say “I wrote a poem,” or “I drew a picture of a stupid cat.” So now today was not a complete waste. Here are some simple rhyming poems.

*I am tired
But do not sleep
I am sad
But do not weep
I close my eyes
And count to 10
If I still feel it
I’ll do it again
Until the clouds part
And the dark clears
I’ll think of my loves
And not of my fears.

*In the corners of my mind
In the absence of a dime
I think about home
In a house that isn’t mine.

*At night I roam
through consciousness alone
Would I have chosen this
If I would have known!

*At least at the end of day
Where I never got dressed
I can say I wrote a poem
And that’s something I guess.

Normally I hate rhyming poems, and I don’t necessarily love these. But, they’re what came out. So I let them. Because that’s what my soul had to say today, and it doesn’t really matter whether it’s good or bad. It’s the fear of making something good or bad that is dangerous. Once I let that fear go, I kind of free myself. The worst that can happen is you write a shitty poem or you draw a shitty picture. Certainly there are worse things! Either way, you’ve got something to look back on or laugh at or talk about, and you weren’t completely at the mercy of illness.

.

I drew the above drawing a few days ago. It turned out to be one of my favorites…drawn on a sick day where I never got dressed. It started with a very simple shape; a leaf. Then I repeated the pattern and this is what turned up. I had no idea what I was sitting down to draw that day, but it’s another example of letting your soul speak. Or stillness speak. I just know that when I designate time to letting things come through me, I am usually surprised. I end up creating something I never could have thought of myself. It’s strange, the way sometimes your dreams can be insanely more creative or smarter than you are in real life. I guess it’s the subconscious at work. This one is titled “I Don’t Normally Look Like This” and is for sale for $10.

Anyway, that’s been the last 7 days. Fingers crossed that tomorrow is migraine free and filled with more energy and I get to wear some happy clothes and run errands like humans do. If not, well then…it’s back to the drawing board.

Health, Happiness, One Thing a Day.

Dude. Solitude.

Published on by Mary Gelpi21 Comments

Sound the bells. I survived the Colorado Crash of 2012. I’m alive. Woohoo!

Yesterday I finally started feeling back to my normal sickley self, not my deadly sickley self. And it feels good to be able to be out of bed for more than an hour a day. That tends to wear on a girl…at least a little. I can’t believe what a disaster my Colorado vacation was. It’s funny I’m still referring to it as a vacation. That’s like taking someone to the DMV and calling it a date. It was really hard for me to enjoy my time there because I was in constant recovery, catch up, and crash mode and the cycle didn’t break the whole time I was there. I had to say no to things and miss out on things which I’m typically “OK” with but this time I felt real sadness and anger about it. I wanted to blame someone, I wanted a reason, I wanted to “talk to the manager” about this. I wanted it to be somebody’s fault and somebody to fix it. But, that’s not how it works. These are the things that teach us grace and surrender and sometimes getting the lesson is the most painful part. By the last night I had broken down in tears just exhausted from being exhausted and feeling like the Debbie of all Downers. This illness tends to turn its victims into high maintenance fun suckers when it’s at its worst, and nobody likes to be around that. By the end I was tired of who I was on that trip and what I required. But my brothers talked me through it and we decided that next vacation we take, we aren’t making an itinerary. We’re not overcommitting to engagements and we’ll try to just take each day as it comes. We’re going to try to effectively do nothing–something I’m pretty spectacular at and most people are still getting the hang of. I’m happy to teach my ways. I’m doing nothing right now!

 

As hard as the last two weeks have been, I feel like it is all starting to pay off because now I find myself in Paradise. My sisters in-laws left yesterday morning for a three-week trip to Africa. When they told me about their voyage months ago my first question was what they were going to do with Mikey–an enormous yellow lab and king of the household. When they threw around options I casually mentioned that Hey, I have nothing to do in August (or any month ever for that matter) and I could watch Mikey for them if they preferred he had a dogsitter. A few days later they took me up on the offer and even allowed me to bring Monty here too. So now, after all the exhaustion, noise, chaos, itineraries, plans and breaking of plans, I find myself in a beautiful California home with two loveable drooling teddy bears, and I could not feel more at peace having arrived. When I wake up in the morning, there is silence, and there is no itinerary to follow. DO YOU KNOW HOW GREAT THAT IS!?!?

 

Truthfully I have always treasured my solitude. If I were a Country Singer, I would write a song called “Solitude Has Always Been a Friend of Mine.” Anyway, it happens at least a few times a year that I require almost total isolation and dream of being locked up in a cabin somewhere and cut off for a little while. It’s like my souls version of food cravings. I have always enjoyed small endeavors on my own. Sometimes I like to eat at restaurants alone, or see movies or go to the bookstore. I love not having to keep up a conversation and going at my own pace, which is usually pretty slow. There isn’t anything so commonplace and exhausting to me as small talk. I have no patience or energy for idle conversations anymore. I don’t like having the “What’s new with you?” conversation. I don’t like to hear how your job is going or how your brothers band got a new drummer. And I don’t like to share news from my neck of the woods either–obviously because I don’t have any. “Yep, still sleeping on peoples couches. Well bye!” I realize this probably makes me sound like an old curmudgeon, and maybe I’m starting down that path at the ripe old age of 27, but there is something about those forced conversations that sometimes even the mere thought of them drains me. They just feel so inauthentic on both ends and since my time out of bed is so precious anyway, it’s hard for me to spend it on a conversation that we’re having to fulfill some duty–or because we feel like we should. This is why having a dog as a best friend works out great for me. No elevator talk.

I don’t care about your job.

Me either!

The other part is, while writing is my passion, it’s kind of  a lonely practice. You can’t do it well with people around. And you kind of have to “strike while the iron is hot” which is typically for me sometime around 3 in the morning. The act of writing is not nearly as satisfactory as the result, and many times the process is grueling. Anyway, the only living thing that can hang out but not disturb me is a dog. Two dogs even. So Monty and Mikey have been great companions. We eat, sleep, swim and write and there’s no itineraries or talking about our jobs. Wanda left me a note welcoming me to help myself to any and everything and to write a book while I’m here. Think I’ll take her advice.

Health, Happiness, Solitude.

Help and Thank You

Published on by Mary Gelpi21 Comments

It’s been almost 7 days and 12 hours that I’ve gone without internet and I am gently reminded just how much a product of the multi-tasking, turned-on tech generation I am. I think going this long without wi-fi is my generations equivalent to camping. I’m pretty sure they call this roughing it. And I’m pretty sure my parents would call me a pansy.

This is an easy problem to fix, as most public restaurants and coffee shops have free wi-fi these days but since I’ve basically spent the last seven days IN BED or using some other piece of furniture as though it is one, I haven’t been able to take my little coffee shop trips like I’d planned.

I’m not exactly sure what’s going on, but since the day after I arrived here, I’ve been crashing about an hour after I wake up. Apparently my adrenal glands aren’t functioning properly and I’m bottoming out after I wake up. And not just “Gee I’m sleepy I think I’ll lay down for a bit” kind of crash. (Since becoming sick I have no idea how a power nap works. I just know 15 minutes could never ever ever ever be enough when I’m in a crash.) It’s more like hitting a brick wall where the only thing to do is go back to bed. If that sounds depressing, well, yeah, it is a bit. But there is no such thing as faking it. I made it to dinner at my cousins Shawns house after three days in bed but didn’t feel like I could keep my head up to play cards after dinner. And we ALWAYS play cards after dinner. That’s what you do in Colorado. That’s what you do when grandma is around. And that was just one of many things I’ve had to miss out on since arriving, which is very challenging emotionally for me. I’m the youngest of four, so basically since birth it’s been my prerogative to just not miss out on anything. But that affect right there is one of the hardest parts of this illness, many times even harder than the physical pain itself.

A few nights ago after spending the last two days straight in bed, I felt like I started to lose my mental strength. My siblings had left to go visit with old family friends who I’d really like to have seen but I just couldn’t make it happen. When I’m sick like that I’ve always felt it’s best to be alone since I’m not a ton of fun to be around and basic “sounds” really bother me. But then after everyone left, I got sad and wanted them to come back again. All of my siblings are here and we have taken over my grandmas little house. My brother has been sleeping on an air mattress in the middle of the living room–and this has really worked out for me, because I basically get to be in bed while simultaneously hearing to the conversations and sounds and chaos that ensues when more than one Gelpi is in a room together.

The truth is, I find myself looking for an answer to all of this and there often isn’t one. There are a lot of questions I have about my life that most of the time I am able to let go unanswered. But during those times like a few nights ago, I can’t escape the questions so easily, and I feel anger about them because it simply doesn’t make sense to me. I was angry that most of my vacation has been spent lying down. Angry that I was missing out on my favorite activities. Jealous of other people’s health. Angry that I rarely get to see all my siblings at the same time, and now here we are all together but I can barely get out of bed. Marc Nepo says it’s our job to make sense out of our pain. So that is what I tried to do the other night as I did the only thing I promised I would do that day–take a bath. Big day for Mary!

During dark times like that, I don’t often have big revelations or hear the voice of God. I just let myself feel the pain and then remind myself that tomorrow is another day and say some prayers. There are two prayers I say when I’m all out of juice and all together they make up three words. And here they are: “Help” and “Thank You.” When I’m too tired to spell it out for the universe, (and let’s get real, I shouldn’t have to spell it out for the universe) those are the prayers I say, and honestly it feels like enough. The help prayer is for strength and the thank you prayer is for my family, particularly my siblings. They have taken phenomenal care of me since arriving, and my sister Amelie has been force feeding me protein every two hours. Even when I’m cranky and don’t feel like moving, talking, or eating. They bring me home leftovers and pick up my prescriptions and lie to me when I ask them if the party I missed out on was any fun. Each of them is an invaluable gift to me. Sometimes I think about my life and think maybe I’ll never get married. Maybe I won’t find “The One” or my soul mate or whatever they talk about on Sex and the City. And then I watch us at work together and it hits me that maybe I don’t need that. Sometimes my mom and siblings feel like all the soul mates I could need. (Monty too of course) That being said, I’m sure they’re all hoping that one day I’ll be able to sustain myself and won’t require an air mattress in the middle of their respective living room floors and I am hoping for that day too. But there is just a lot of love between us and often I feel like my glass is overflowing with the stuff that matters. And pain and exhaustion aside, that feels pretty good. At the end of the day, you ask yourself; do I have what I need? And I do. I have modern medicine and the smell of my grandmas house, 10 more minutes of free wi-fi and unconditional love and the answer is clear. Today was hard, but I had enough.

Health, Happiness, Enough.

If I Was a Horse, They’d Shoot Me

Published on by Mary Gelpi9 Comments

Maybe that title is a little extreme, but sometimes when I’m counting out my pills in the morning and filling up my coffee mug for the third time, I wonder about my existence. Not in the depressing suicidal way, but more in terms of how such a weak physical specimen as myself has made it this far, it being survival of the fittest and all. I’m far from fit, but I guess I am surviving. But when I see people on facebook climbing mountains and shit I think crap, I can’t even stand the thought of standing in line without needing to faint. What am I doing here?! Then I get off facebook because I’m really starting to believe it is the demise of human beings. I think I’ll post that thought on facebook.

After visiting with the doc in Miami and changing around a few doses of things, we agreed upon my next round of treatment; which is two anti-biotics for the next two years. Woo! Yeah! Apparently, all my liminess isn’t gone, and the 6 month run on those overly priced horse pills didn’t do the trick. SO. Round two. To be honest, I’m fine with this decision. I mean, my pill bag has just enough room for two more bottles, so I’m cool with it spatially. I could look at it and be like waahhh two years of more pills. Or I could look at it as; In two years from now I presume I’ll be alive anyway, so would I like to be full or free of lyme disease? It’s my patriotic duty to choose freedom. And anti-biotics. So here’s to more pills! We’re waiting on the blood work still to finalize decisions but it’s looking like I’m in it for the long haul. Which is fine because, you know, I have the time.

So I’ve been reading A New Earth and it’s really awesome even though I’ve read it before. I think it’s one of those books you could continue to read your whole life and never fall short of gaining incredible meaning. The only other book that has done that for me is The Giving Tree by Shel Silverstein. I love that book.

Aaah Childhood.

So anyway there’s this part in A New Earth where Tolle is talking about human evolution. It reminded me of my first day of my college anthropology class. The teacher brought up evolution and began to talk about the timeline for the semester and then started to give his personal viewpoint on evolution so the class would have a clear direction. Then he asked if there were any questions and a student raised his hand and asked “But if evolution exists, then why have humans stopped evolving?” The teacher smiled big and shouted “Great Question and THANK YOU for asking!” (This was his enthusiastic response to any question a student decided to ask during class.) Then he put his hands together under his chin and answered with “That’s the good news. We haven’t!” He went on to explain that evolution are adapted changes made over a long period of time, and that if we compared modern humans with our counterparts 10,000 years ago, there would be numerous differences. I at least know that in terms of communication even in the last ten years there have been an incredible amount of changes that will forever change the ways humans interact with one another. I’d love to show a caveman Facebook.

Wait why don’t I just actually poke her?

Anyway, back to the book. Soo Tolle is talking about humans and how we’ve evolved and that one of the biggest fundamental differences between human beings and the rest of the animal world is that we are conscious of our consciousness. This kind of awareness is what drives the fundamental questions like “Who Am I?” and “What Is My Purpose Here?” Although these are the kinds of questions that can be terrifying or seemingly impossible to answer, they are what make us uniquely human and for that they should be celebrated! And pursued, too. What he also says is that “The next step in human evolution (enlightenment) is not inevitable, but for the first time in the history of our planet, it can be a conscious choice.” Cool dude!

Along those same lines, I watched a lecture that Deepak Chopra gave a few days ago, and much of what he spoke about correlated with this very concept. (Synchronicity, Yeah!) He talked about the mind, the body, and the soul, but he began by expounding on the intelligence of our human bodies independent of our human minds. For example, our bodies are made up of 100 trillion cells, which is more than all the stars in the Milky Way Galaxy. Each cell is performing roughly 100,000 activities every second and every cell instantly knows what the other cells are doing and correlates its activities respectively. This is how we are capable of thinking, talking, digesting food, playing piano, killing germs and removing toxins all at the same time. “This is the inner intelligence inside of you that mirrors the wisdom of the Universe,” he says. It was cool to hear him speak about this because so many times I’ve laid in bed with my hand on my heart, listening and feeling my heartbeat and thinking “Who’s making it beat?” I guess the answer wasn’t a who, but a what. Or a who-what.

Then he broke down human intelligence into four levels. He said that the highest form of human intelligence is State of Being. He describes this as the ability to observe yourself without judging yourself. The Second highest form is Feeling- our ability to feel compassion, joy, empathy. The 3rd highest form is Reflective Thinking- Who Am I? What Do I want? What will my contribution be? What inspires me? And the 4th highest form is Doing- the ability to create happiness. He also provided a pretty simple but profound definition of the soul- the space between your thoughts. Think about it.

Anyway seeing as how sometimes I’m a worthless physical specimen that doesn’t “do” a whole lot, I liked how doing was last on the list. :) But it was his last thought that was most reassuring to me, since it had been a very sick week and I was feeling a lot like a horse needing to be shot. “The next state of evolution is consciousness. It will be survival of the wisest, not the fittest.”

Health, Happiness, Horses.

Greetings From Bed on Hard Knocks Island

Published on by Mary Gelpi20 Comments

I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.

Not Too Shabby a View

I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.

Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!

The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)

On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone it so many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.

Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.

In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.

Health, Happiness, Crash and Burns