Where do I begin? The last few weeks have been a whirlwind of physical and emotional changes to have me seriously considering my future and the progression of this disease.
A week and half ago I began to experience numbness and tingling in both of my lower arms, wrists, and hands, to the point where I was dropping nearly everything and couldn’t hold a pen. The accompanying pain was constantly on the forefront of my mind, and I became increasingly nervous as it continued to grow worse. I was diagnosed with carpal tunnel, which is usually caused by structural change and nerve damage within the wrist due to overuse. In my case, however, the nerve damage is most likely result of eleven years of continuous dislocations, and even with constant bracing, it is unlikely it can be reversed. I’ve been wearing splints constantly for the last week and a half, and the immobilization has got me thinking in whole new ways about the importance of touch and contact in social life.
As is frightfully common in Ehlers-Danlos, when one thing goes wrong others follow. With my wrists immobilized, my fingers have begun to become hypermobile, so I have to stabilize them the best I can with compression gloves designed for arthritis patients. These gloves leave only the tips of my fingers showing, the rest of my hands encased in protective armor. Someone remarked to me the other day that I looked like I was about to get into a fight or had just come from one, and I laughed, saying that I hoped they made me look tough.
Additionally, as of the last week, if I have to use my left arm for any significant amount of time, I have to brace both the elbow and the shoulder, in addition to the wrist and hand. And not even three days ago, I dislocated my right SI joint, and my right leg has been bothering me ever since. I’m not positive I reduced it fully, since my right leg still aches at its original level of pain, and my left leg has been having problems sympathetically. What this means is that I’m essentially braced head to toe: both ankles, knees, both wrists, both elbows, and one shoulder.
I am armored and ready for battle.
I’m protected from this battle that my body seems to be waging against me, and the opposition seems to get stronger every day.
What I realized recently (and this is even harder to say out loud into dictation software than it would be to manually write it down) is that I’ve been living in denial for the past three years. As the changes to my body (and my lifestyle) come more rapidly, I’m watching myself grow more and more disabled as the cumulative effects of this disease cause unavoidable, permanent damage. And so now that I have acknowledged that further change is not only inevitable but by all predictions imminent, I wait, knowing that bracing is not going to be a permanent solution, but it is a solution that allows me to go into battle fighting strong. I am ready for that fight, just as my friend remarked, and I’ve stopped allowing my armor to make me feel self-conscious about my body; instead, its constant, unavoidable presence is allowing me to face my disease and my progressing disability head on.
I don’t know why various parts of my body are choosing now to let me know that they can no longer handle the stress of daily living, but as the days go by and I lose more and more upper body function, and my lower body reminds me of its problems, I’m beginning to realize that there are lessons to be learned here and ideas to be fleshed out. The hardest part has been telling my friends that these sudden changes are permanent; the look in their eyes when I describe the meetings with the Accessibility Education Office and the new adaptations I’m in the process of making reminds me that this disease is scary, and that these physical changes are scary. Having lived with mild symptoms for so long, I had begun to think of EDS as mild and livable, though I rationally understood the potential for progression.
But it’s not even three months into the semester and this is the second blog post I’ve written about all the changes that my body is undergoing more rapidly than I could have imagined, and there is nothing I can do to stop it.
So I fasten my armor, and prepare for battle.
It’s going to have to be a battle of wills, a battle of mind and of temperament. I am preparing with books, conferences, and social media engagement, the only ways I know how. I just finished reading How to Be Sick by Toni Bernhard, a Buddhist-inspired guide on living with chronic illness, and I am excited to write about everything I’ve gleaned from it. On Thursday I attended the Connected Health Symposium in Boston (though Friday I was too sick to attend completely), and I will be writing about what I learned about health care and the potential (or lack thereof) for patient-centered care in the coming days. And I continue to learn from, be inspired by, and benefit from the incredible support of the spoonie social media community.
I’m worried and scared about what will refuse to work tomorrow or the next day, but I know that my fears will blow through just like this impending hurricane, and recognizing those fears does quite a bit to allay them.
I have a quote on a virtual sticky note perpetually up on my screen that contains this quote from an online source I found years ago: “Dance with EDS, don’t fight. Fighting an incurable, progressive disorder probably means you’ll lose. But dance with it, and you’ll find some grace. Some days you’ll lead, some days EDS will lead, but you’ll be dancing, and you can still cover most of the dance floor, just in smaller steps…”
Then I guess I’m a dancing warrior, because I’m not sure I can sit back like I have for the past 10 years and let symptoms come and go. At this point, I’ve let EDS lead a bit too long, and at least for now, I’m going into battle, braces tightened and gloves on.