Gravity Diaries: Myasthenia Gravis and Me

I know why babies cry, honestly I do. Because it’s a pressure-filled world, baby. Literally. Gravity is a bitch without healthy skeletal muscles protecting our organs and keeping our frames aloft. Having all that force relentlessly pulling at delicate, underdeveloped limbs must be torture to a newborn. And how do I know this? Because I was abruptly thrust back into a second infancy about two years ago, when at the age of forty-one I was rushed to the hospital with undiagnosed myasthenia gravis, a rare autoimmune disease characterized by chronic and abnormal muscle fatigue and weakness. My immune system had basically gone haywire and was producing antibodies that were damaging the muscle receptors needed for normal muscle contraction.

I was so full of these faulty antibodies that groups of muscles were becoming unresponsive, including my throat and chest muscles. And one day, I couldn’t even dredge up the strength to draw breath. At that point I was officially suffering from an acute myasthenic crisis, which is when the respiratory muscles become too weak to support breathing. I was intubated, hooked up to a ventilator and unable to move or speak while doctors attempted different drug therapies and procedures to try and diminish my autoimmune response. But the most terrifying aspect of the ordeal was that even though I was basically paralyzed, there was no damage to my actual nerves or ability to register physical sensation. So, I felt everything with blinding clarity with no way to outwardly express the terror, pain, and discomfort I was experiencing. Not sound or movement — not even tears, since I was still on the ventilator. All I could do was scribble ineffectual notes with my shaking fingers as I lay there like a meat puppet without strings. I thought for sure I’d go insane, the mental shock and isolation at times was overwhelming.

It took four months on the vent and surgery to remove my thymus gland to get to a point where I could slowly move parts of my body again. But I wasn’t the same. My muscles and limbs didn’t feel like mine anymore. They pulled at all the wrong places, like a cheap borrowed suit instead of something bespoke. Even my facial muscles were affected: my eyelids now drooped, my cheeks and mouth felt frozen, and I had severe diplopia, or double-vision. I underwent more experimental drug therapies while in the ICU and the post-operative recovery was painstakingly slow. Once I was discharged with a hefty drug regimen, a new kind of terror overwhelmed me. I was now expected to try and live some semblance of a life while in this screwed up body… how the hell was I supposed to do that?

Living with MG is having a strong invisible current constantly pulling at you from below. The abnormally heavy sensation across muscles and limbs is disconcerting and simple movements like lifting arms or legs or just sitting upright can take an inordinate amount of energy. I struggle to get in and out of bed every morning and it makes me feel vulnerable, frail and old before my time. People can’t understand that the kind of fatigue that I experience is not the normal kind that can be resolved with an energy drink or a cup of coffee. Aggressive weakness seems oxymoronic, but it sets in fast. When I feel the signs, I have to actively pause, close my eyes completely, or disengage entirely from what I’m doing to let my muscles rest, like a car that’s overheated on the freeway. It may sound like a minor thing, to slow down when you feel tired, but it’s not minor if you ALWAYS feel tired. It impacts your ability to work, to meet deadlines, to engage with people, to live your life to the fullest. I used to love my job as an administrator, to meet friends, to explore my city, dance, hike, travel, see plays and concerts. Now just the thought of these activities overwhelm me, and it’s all I can do to walk a few blocks each day in the hopes of shaking the ache out of my busted limbs.

I never imagined living with an autoimmune disease and living with unremitting weakness every day. Ever since my diagnosis, I mourn the confidence I used to have in myself. After all, muscles are synonymous with strength and mine were no longer trustworthy. Spontaneity, along with many of personal and professional goals I had for myself, died a slow death while I was in recovery. I can’t drop everything to jump on a plane or a car, and I miss traveling with friends and family most of all. Even short day trips can be a pain: it can’t be too far or too hot, the terrain can’t be too rough or unpaved and I have to pack tons of supplies such as water, snacks, adult diapers and wet wipes in case I don’t have the muscle strength to make it to a restroom. I have to be hyper-aware about the severity and frequency of my symptoms, and plan things meticulously so that I’m not caught unprepared during a sudden spell of weakness. The MG makes me permanently immunocompromised so even simple medical procedures can have serious side effects on me, particularly if they involve anesthesia or antibiotics.

I wish I could say that I adapted easily to it all, but the truth is I still struggle. I am still afraid of my body’s reactions and possibly ending up back in the hospital. Everyday I’m reminded of my limitations, and it’s glaringly obvious that we live in a world not designed for differently-abled people. I felt angry and depressed for a long while, but at my lowest I try to remember that even when I was lying inert and voiceless in a hospital bed, I never stopped trying to communicate with people. When I couldn’t speak, I tried to write, when I couldn’t write, I used mime and gestures. When that failed, I writhed and pulled at wires until those around me realized I was struggling to be heard. I never stopped trying to break out of the bounds of my own body, to connect in my own limited fashion. I somehow adapted to new ways of communication with almost no tools at my disposal. I would adapt to gravity again. I would adapt to the drugs, to immunoglobulin infusions, to moving at snails’ pace… it would just take time. But I have to believe that I can still live a meaningful life. Experience things. Maybe wonderful things. So much feels undetermined at this late stage in my life, which is scary, like being reborn in a way. And writing this reminds me to not give up. To keep trying to communicate. To kick, scream, cry; then rest, medicate, and do it again. To remember that I’m breathing on my own, am mobile, and can make a difference in small ways. I may always be MG-and-earthbound, but my actions, however slow and measured, can still effect change, inspire, inform, revolutionize — and I can dream of living with purpose again.