When I was diagnosed with an autoimmune disease, my doctors and nurses gave me access to so much information about what I might expect as time passed. There were pamphlets, a plethora of doctor office printouts, and then the onslaught of healing advice from friends. I read about every possible discomfort that could reasonably show up in my future. Well, most of them – loss of mobility, possible speech slurring, brain fog, and more. The list seemed never ending. I felt overwhelmed but also prepared to overcome any obstacle.
From the very onset, I truly believed that I’d never be immobile. I remained resolute in the idea that I could conquer any foe through sheer force from my soul. No matter how difficult life became, I could willpower myself through. And so, for a few very determination guided decades, I did exactly that. Sure, I expected to not be able to lift heavy items. Fatigue taxing me? I had this – with assistance from the pharmaceutical magicians, and loads of Starbucks. Speech issues? Whatever, I just didn’t talk as much when my mouth was uncooperative , or I’d hyper focus on pronunciation. When my feet lost feeling, I’d still wear heals, and stubbornly learned to fake a confident walk. Occasionally I would develope double vision, but again, I viewed this as a challenge. I didn’t want to be a victim, I wanted to be a superhero.
What nobody warned about though, were the symptoms that cannot be beautifully illustrated in a pamphlet about how “there’s life post diagnosis”. I suppose nobody is comfortable discussing digestion and beyond, and so we just… don’t. Either that, or these symptoms were simply described in tiny font somewhere on a diagnosis sheet. These are the situations that terrify me the most when they do happen. I mostly understood muscle weakness. Ok, so some days or weeks I have to work with a pocket full of kryptonite – that’s life, I figured. What I didn’t realize was that loss of strength could include ANY muscles. This includes erm…kegels and all…that.
It wasn’t so bad the first time. I’d spent the morning shopping in the mall, and without warning, I felt a sensation something like pregnant water breakage. Tough girl mode kicked in, and I decided I was going to hold my head high and my selections at a safe distance from my legs as I walked to the register and checked out. Then I headed home with my new clothes and funny party story.
Over the years, one instance turned into a common occurance and then evolved and migrated. It’s never expected, regardless of how well I attempt to learn food or stress triggers. When I am experiencing a relapse, I could absolutely totally pull my shorts down to pee, to find a disgusting reminder of my degredation. Sometimes one day stretches into a three day episode. Slowly, slowly, each trip to the bathroom wears on me. I don’t know for sure what I’ll have to clean up, or if I’ve worn enough protective layers. Embarrassed and perpetually near tears, I carefully clean or dispose of any dirty laundry, out of site from the family I’M supposed to be caring for.
Evenings are quiet because I don’t want to talk – especially about anything that prompts me to replay my embarrassment. I’m quiet because I feel like an abomination. Exercise is fairly impossible. Plans get cancelled using whatever excuse I slap into a regretful text.
Over time, I have swung like a pendulum between feelings of disappointment and anger towards those doctors. Finally though, I have learned that the answers I want and the peace I need are both things I have to advocate and create for myself. I learned that I am still strong. I’m still stubbornly defiant. I’ll still find some miniscule bit of humor in these mortifying situations. I’ve learned and adapted, but I’m still sometimes scared.
I still wish I’d been warned.
Creating Peace From the Pieces 