Hiding in Plain Sight
It’s been like fighting a weighted rubber suit since my first Ocrevus infusion in late August. Some people with Multiple Sclerosis have gotten the infusion and had more energy than they’ve had in years. I am the opposite. I should be outside with the 72 sixth graders and the other teachers on our fall trip but I am inside, in pain, annoyed at my own inability to participate. I’ve woken up exhausted for years, but this is different. It’s like my organs are heavy and my skin is a hot film of pickled glue. The weight isn’t just sensory, it’s real and “imagined”. I’ve gained 15 pounds. I’d care, but I gave up caring three steroid infusions ago. Fat acceptance is par for the course.
The sixth grade class is delightful. This is my ninth year teaching Middle School art at private school in Oregon. I couldn’t have landed a better job, but I am worried I won’t be able to keep it. It’s not them. They support me as best they can, an experience many employed individuals with a chronic illness can not boast. I know I am blessed, but I am also sick.
In the past I’ve always tried to hide my illness, but I can’t seem to manage that anymore. Not this year. I’ve come up with narratives, true narratives, to say to my students like “I have a bad back.” What I really have is muscle spasticity where a series of muscles from my neck to my knee seize- a never-ending Charley Horse. Walking up hill is agony. I have “headaches” and “lack of sleep”. Normative explanations and innocuous descriptions.
It makes me feel weak to explain away my actions, or lack of actions. Other teachers know I am a bundle of health issues, but I don’t want to burden the kids. I feel, for kids, knowing I have a chronic, incurable, degenerative disease is just too much. They worry- deeply. They absorb so much more than we realize. If I can protect them from anxiety I will.
Yet, I wonder if I am doing others a disservice by hiding my pain from them. Children and adults. It assumes they are not fully capable of responding to such a reality with grace and understanding. People are surprising, and I wonder if I am stealing an understanding, a reality, an experience of truth from them. By hiding, am I denying them a brush with human frailty paired with joy- of pain amidst hope, of illness inside a full life? Because that’s what it is. A symbiotic paradox of wonder and crap.
Chronic Illness is an epidemic. So many people, including myself, are hiding in plain sight. My body is not well, yet I am trying every single day to be well. I am at the brink of required change- this rubber suit of neurologic dysfunction, numb legs and vertigo laden senses, of constant fatigue and prickly arms, head pain and false itches. The symptoms compound, and add, and change and our culturally normative expectations of work and home life stay the same.
I love my job, my students, my life- but it may not matter. I go see the doctor in three days to discuss my meds, after a day of teaching. Shall I do a second Ocrevus infusion in January? After all I have very few, if any, disease modifying drug options left. I’ve been sick since I took the first infusion- a nasal abscess, psoriasis flares, the worst allergies of my life and (of course) a cold. My immune system is fighting, but not for me- against me. This drug has taken away any fight I have to keep going. I am going on fumes, and a love for seeing kids learn. It just might not be enough.
Hiding in Plain Sight
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