“I miss the joy of dancing.”
Reading those words on a notecard attached to pointe shoes was the moment the documentary “Unrest” had me crying.
Even now, I’m held up in bed, not allowing myself to do anything today besides recital this evening because I have done too much this week and next week begins it all again, and I’m weeping as my fingers stroke the keys of my laptop, trying to find words for this post that has been sitting on my heart with the weight of an elephant for a while now.
I’ve known about this documentary. I’ve had friends watch it and message me about it. But, until now, I’ve avoided watching it. I guess partially because I’m a bit afraid to accept that this is my reality. I thought I had, I thought I was doing well at processing it and what it means to have this diagnosis and the uncertainties that come with it. I thought I was doing well. But I’m not. I have a long road ahead of me, full of uncertainties and bound to be lonely, and frankly that is terrifying.
But, today is ME/CFS Awareness day, which stands for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, which is the only thing my blood work has ever shown without a doubt, which lead to the first time a doctor believed me that something is wrong here. Today, I chose to finally watch this documentary, done by someone I could never thank enough for her bravery to put on blast a condition that more people are dealing with than those with MS by double. Try googling “Cases of MS in US” and see how quickly you get an answer. Now, try googling “Cases of ME in the US” and you’ll struggle. Change it from ME to CFS, and you finally start getting somewhere, but it’s not hard to realize that it is under researched and under funded. We have the lowest amount of funding from the NIH, largely due to the fact that we aren’t believed.
Ever heard stories from back in the day when women had hysteria? They were locked up in mental institutions and labeled as mentally unfit because of the very same condition I struggle with. And it’s hindering everything.
I’ll save you from a soap box of how wrong this is and instead encourage you to watch Unrest on Netflix, as Jennifer Brea so perfectly captures what living with this is like in such a raw and real way it leaves no room for doubt at all. It goes through Jen’s story, as well as the stories of people she has met and the struggles they face as people with ME/CFS, or those with loved ones struggling. It’s a beautiful representation of the millions of voices that go unheard, fading into the void of the condition, ignored by those not forced to see it. It shines light on many of the facets that play into the stigma of this condition and why there is such a struggle to learn anything about it at all. It’s incredible, whether you know someone with ME/CFS or not.
Today is ME/CFS Awareness Day, and I am aware that I have this condition, and that it is slowly whittling away at who I am. If you read my last post you’ll know that I had to quit my full time job due to this illness. It’s been a week, and I thought I knew what to expect going into this, and maybe I knew as much as I could, but what I am learning as I go has left me emotional, to say the least. My entire world is changing. Everything I knew about it is different now, and everything I could hope for in the future is uncertain.
Most people got ME/CFS after some sort of terrible fever. They recovered from the fever, but were never quite the same. As far as I remember, I never got a fever, and even my rheumatologist couldn’t explain how I could come down with ME/CFS without exposure to mono, but really that’s all sort of relative anyway to the fact that so little is known about this disease. She’s the same doctor I saw last month that wrote me off as a hopeless cause she can’t do anything else for. My Primary Care Physician moved to Houston, as is common for this area if we ever have a doctor that actually cares and is worth anything much, so now I’m back to square one. I have to find a new PCP to go any further with anything, but it’s not that simple. I have to find one that will believe me. And if I say too much, they’ll write me off as someone with mental deficiencies causing it all, and if I say too little they won’t see the severity of it all. After all, I look just fine. Not to mention that I also do not have insurance, so all of this is done out of pocket, which is fabulous for someone who lives alone, without a full time job, and who has blown through her savings on all the specialists she’s already seen.
ME/CFS is a spectrum disorder, which means everyone is different in how they handle it and what their bodies can tolerate. It also means that just because you’re one way now doesn’t mean you won’t be something completely different in a year, a month, an hour, or even the next minute.
So while I have had to quit my full time job, as of right now I can still teach. It helps that classes are in small bursts, which makes it more manageable and easier to tolerate. What I don’t know is if this will be the case forever. I have seen such a rapid decline since diagnosis, and even in the six months before that when I first began noticing symptoms that I know better than to expect to be back to what I used to be. And honestly, if I were able to just stay where I am currently, I would count that a massive win, but even that seems unlikely. It’s hard to know what to expect, not only because of how little is known about this disease, but also due to the fact that we literally have no clue how I contracted it. I’ve never had mono, I rarely get “normal people sick,” the only thing I can actuate it to is a genetic condition that doctors also don’t know much about and are too afraid of how little they know about it to diagnose me with. Except for my chiropractor. He is 100% certain I have hEDS, but I don’t believe he has the diagnostic authority to say so. What he does have is the power to sign off on a disability parking placard, and right now that is everything. I’m trying to mentally prepare myself as best I can for the inevitable people who will tell me I shouldn’t be taking up the spot from someone “who actually needs it” and if I’ll just walk away or if it’ll be worth trying to explain to them that I am one of those people even if I don’t look it and that this is actually mine, but I’ll cross that bridge when it comes.
One thing I am absolutely incredibly grateful for is the fact that I didn’t hesitate in taking those first steps that lead me on this path of dance back before I was sick. I accomplished more in those five and a half years than I ever thought would be possible. And even if I never improve past where I am today, those memories are real. They stay with me. I know I did that and nothing can take that away from me. I won’t move forward in regret of all the chances I didn’t take, but have pride in my heart that I faced the fear of the unknown and rejection and took the literal steps to make my dreams of dancing come true.
I am also grateful for the people I do have in my life. Having a chronic illness is a freaking lonely road that no one can prepare you for, especially when you’re in the phases of coming to terms with the fact that this is now your reality, whether it’s in the beginning, or you’re deep in the trenches and another wave of it washes over you. It makes you feel guilty as hell that you’re not who you used to be, as well as a whole heap of other emotions I’m still a little too proud to admit. Maybe I’ll lose some of that pride as this goes on, but just know that it freaking sucks and it’s something I wouldn’t wish on my worst enemies. I have friends that are forgiving and understanding. Friends that offer to help me with absolutely trivial tasks I can no longer do on my own. Friends that don’t hold it against me when I have to cancel plans again. Friends that are in the same boat and act as a support as we navigate these rough seas together.
Quite uniquely to this generation, I have friends online, and these have to be some of the dearest of all. On specifically has a whole laundry list of chronic illnesses of her own, in and out of hospitals, and still finds ways to dance when she’s able. To say she inspires me is the least of words I could find, but I don’t know if there are any adequate enough to express what having her in my life means. She’s the one who most recently told me about what watching UnRest meant to her and how she empathized with me. Honestly, I felt unworthy, as I am truly so fortunate to have as much health as I do. I can still get out of bed most day, I can still teach, I can still live alone, I’ve never been hospitalized for this, I’m still able to pay my bills and lead a mostly normal life. But the greatest gift she gives me is that of her story. She shows me that even in the darkest of times, we can still find hope. That our story still matters, that we still matter. That we have a voice and it’s our choice whether or not we use it.
I’ve been so hesitant to write as much as I do about my health issues. I don’t want to disinterest my audience that came for the dancing and now find themselves with this person who isn’t what they signed up for. But instead what I’ve found is my readers have increased. I’ve found other dancers also dealing with the same or similar illnesses, as well as the struggles that come with it. I’ve found this entire network of people out there navigating the waters as I am. And that is truly a gift I never expected, one I can never repay.
I still struggle to believe that this is my reality. Ever day it seems to become a little more clear, and I know I still have much to discover and process with it all. I’d be lying if I said I wasn’t still weeping as I’m writing this, and I never used to be a crier. But this is my reality. This is my story now. This is who I am and the lot I’ve drawn and it’s up to me how I choose to handle it.
I choose to use the voice I have. I choose to make the most of it. I choose to feel everything that comes with this, to push through and be as raw and real as I can about what this new reality is like. If not for myself, then for the person out there finding themselves in a similar boat, weeping over the dreams they’ll never get to achieve, struggling to find the strength to begin thinking about forming new dreams. I choose to do my best to be to someone else what these incredible women have been to me.
Jennifer, Bailey, thank you for being shining examples in such a freaking dark world. I’ll never be able to thank you enough.
If you’d like more information on what you can do to help the #millionsmissing as they seemingly disappear into the void this illness creates, please check out the website here.
If you’d like to know about my friend Bailey and her story, please see her instagram here.
And please, take a moment to look around you. Notice those simple things you have, those day to day moments, and cherish them. Then, take a look at your life. See it for the beautiful story it is, even if it’s nothing like you expected it would turn out. It’s your story. The pen is in your hands. Please, please, find the courage to keep writing. Your story is great, and it’s up to you to write it.
You matter. You are seen. You are cherished.