by Renée Canada
Yesterday was such a gorgeous day. The air was no longer swampy and wet, the sun not scorching and unbearable to be in its path. I opened the bedroom window and deeply breathed in that fresh air, enjoying every breath.
Part of the joy I was feeling on Wednesday was that it marked four days since I had last experienced a crippling involuntary muscle movement. I was afraid to write about it, to speak it aloud, and even thinking about it made me worried I might jinx it. Yet I remembered I felt that last year as well, when there were a few days of being symptom-free, then a week of being symptom-free, then weeks of being symptom-free.
Finally I got to the point where, if I did have symptoms, they were so unnoticeable to the untrained eye that I could hide them. Or I could move off into corner or an abandoned hallway until the episodes were over.
I was so aware of my body that I knew when to stay in all day at my home office, and when it was okay to be out and about conducting interviews and reporting on town meetings.
Before I realized it, I found I was able to work harder than I ever had before in a job I loved, producing material I was proud of, for a readership who truly appreciated my work and went out of their way to tell me so.
Yet it took a major leap of faith for me to go from being simply extremely grateful for an extended remission of sorts to jumping into a job that couldn’t take a complete relapse as an excuse. And a return to the old symptoms could come at any time really, if you thought about it, as remission had come so unexpectedly. But it was better if you didn’t think about it at all, so you just kept pushing and working and praying each day you’d wake up as strong as the next.
But one day everything it all came crashing down around me. To say I wasn’t given warning signs would not be entirely true. I may have tried to ignore said warning signs for as long as I could, though secretly preparing behind the scenes for the worst. Which came.
Since that painfully sad day, there have been some periods of relief and reprieve that I always knew was temporary. Alterations of medication ensured that my journey would continue to be rocky ahead.
But now I stand in the last week on that medication that has been both my lifesaver and my destruction. I honestly feel like throwing a huge party on the day I take my last pill, do something symbolic to celebrate my body being rid of this, well, poison really for hopefully a long, long time.
So I was feeling joyful yesterday! Counting down the days. Counting up the days of being symptom free. I decided to share the news with my parents who congratulated me with true joy. I decided I would get on the computer and share the news with you.
But first I went to take a shower. As the streams of water poured over me, I lifted my leg up to scrub my feet when I felt that familiar weakening of my tailbone. “No,” I thought angrily, trying to fight it. I continued to scrub.
“No,” I thought with tears in my eyes as I crashed to the bottom of the tub. I didn’t even have the shower chair in there anymore. It had been at least a couple weeks since I’d last had a fall in the shower.
My fingers and hands already stiff and achy as the decreased medicine left my autoimmune disease flaring were now joined by my throbbing hip, back, and other body parts.
Eventually, I was able to pick myself up, rinse and dry off, before getting dressed. Dejected, I limped back to my room and put this piece back on the shelf. Instead I lost myself in writing about memories from the past.
Today started off as another good day, except the weather was deliciously dark, thundering and rainy, perfect for taking it easy physically while getting some studying done. When I grew hungry for lunch, I went downstairs to grab my already prepared gluten-free wrap with dairy-free tuna salad with cranberries and apples (thanks to awesome bakery at Nature’s Grocer, a few carrots, and started up the stairs.
I tossed a carrot in my mouth and made it about a third of the way up the stairs when my leg gave way, and I crashed on my face, sliding down several steps. Everything hurt.
Again nobody heard me as my jaw opened and closed, contorting involuntarily, bits of half-chewed carrot dropping on the stairs. My upper body trembled as I let out groaning noises that nobody heard.
Finally, I could hear my dad come in from the garage. My mother said she thought I was on the stairs of the basement. I, of course, was incapable of telling them where I really was. But eventually my dad made his way to me.
When I was finally stable enough to stand up and be helped up the rest of the stairs, I cried out, holding my ribcage, which had been pressed up against the whole time. Even now, many hours later, I have aches and pains in random places when I move. More bruised, of course, is my ego.
Yet I realized later, I still have a victory to claim. I did have four entire days without episodes. I am only a couple days of having none of this particular medicine in my system. These are all great cause for celebration. I will take my moments of joy and accomplishments and hold them high, like brightly colored banners waving in the sky.
It’s so inspiring how you can take your situation the way it is and still allow yourself to claim celebratory moments, joy and determination. You’re truly inspiring, you’re a wonderful writer, and I appreciate your honesty.
Thank you so much, Chelsea! Your very kind words mean so much to me. My hope is that my honesty about my struggles might help encourage others in their own journeys.