I Am Not Brave: Thoughts on Living with Myasthenia Gravis
Note: I wrote this quite a while ago (about five months ago) and never posted it. I found it languishing in my drafts folder while I was working on #VeganMoFo and thought it was something I was ready to put out there, now that my emotions are a little less raw. It is not at all about food, so if you're here for that, I'll catch up with you tomorrow.
I know I titled one of my previous posts about myasthenia gravis "Adventures in a Brave New World," but that really wasn't a reference to bravery as it was meant to evoke the dystopia I am in by borrowing, somewhat ineptly, from A Brave New World. This post is about actual bravery, and why "You're so brave!" is getting on my nerves.
The most recent reason everybody has been saying I am "brave" is that I had to go to Manhattan for some very unpleasant medical testing called electromyography (EMG). It measures electrical signals sent from your nerves to your muscles with a combination of repetitive electric shock and the insertion of probes with needles. After the repetitive shock portion of the test, each muscle tested had a needle inserted into the center, and then I was required to exercise the muscles with the needles in them so electrical activity could be measured. I also had a specialized form of this test (single fiber) that very few neurologists can perform, that is more or less only done with myasthenia gravis, which is why I had to go to Manhattan. (I had previously tried to get this test done in Philadelphia, you will recall, but their machine broke the day I went there.) Single fiber EMG is done on the smaller muscles of the face, around the eyes. These require very precise needle placement. There aren't very many doctors who can do it. My own neurologist said "This exceeds my skills," and sent me on my way. It was a full day of train rides, tests, and then more train rides for me.
The doctors I saw were very kind, much better than some of the people I've encountered since getting sick. It was painful (obviously) but mostly tolerable. It hurt more on larger muscles because the needles had to be put in deeper, and I was sore afterward for several days in those muscles, but for the most part the little muscles (like the ones in my hands and my face) stopped hurting after a day. As I am told is fairly typical, I nearly passed out during the testing. It was, altogether, not the most pleasant day of my life, but honestly, it was easier to deal with than a particularly horrible MRI I had.
I posted something about this on Facebook, which is usually a mistake but I guess I never learn. I was amazed by the wonderful bedside manner of these neurologists, and that's what I was posting about, rather than detailing the procedure. They had a tenderness about them. They acknowledged that what they were doing was effectively "torture" and did everything they could to make it less awful, even dabbing my face with cold compresses and offering me cake when I nearly blacked out. So I praised the neuroscience center at the hospital I visited. In response to this, the usual suspects, the ones who toss off "I'm praying for you!" but never write or call to find out the effectiveness of the prayers they're supposedly praying, or bother to ask what, specifically, to pray for, responded with, "You're so brave!" (I do not think these people are actually praying, so much as they're displaying performative quasi-piety for all the world to see, but that's a rant for another time.)
"Brave," they say, as if they did not develop my disorder because they lacked the courage, and I, by living an unimaginable life, must possess superhuman fortitude rather than ordinary human frailties. Would I be less "brave" if I chose to die quietly? Is it brave to subject yourself to conscious "torture" when the alternative is the possibility of steadily increasing paralysis and likely death because doctors won't know how to intervene? Are the things we do to save our own lives signs of bravery, or something else? Was I brave when I collapsed in tears on my apartment stairs when I'd gone as far as my body would let me? Bravery implies choices I don't have. To say I am brave--like drive-by "thoughts and prayers"--really isn't meant to comfort me. It's meant to comfort the person who calls me brave. It's a performance for others in which I am needed as a prop, but it has little to do with me.
In their discomfort with the unimaginable--at a body that mysteriously turns on you, with no cure and no good options for treatment, that requires you to undergo unpleasant, painful, or even bloody diagnostic procedures on a regular basis--they feel, I suppose, the need to do something, except there isn't anything to do (so they must believe), and then instead they pronounce me "brave, "make me the other, make me not them, so that the uncomfortable realities don't come breaking through. Except that there is nothing remarkable about me, if we're honest here. I am just someone who drew the short straw. They must do this for themselves, of course. If they understood me as a regular human person they'd have to face the fear that maybe their bodies will turn on them, too, without warning or reason or cure or effective treatment. Just...gone, drifting away, taking with them their dreams, their hobbies, and pieces of their identities.
Sometimes I follow the unwritten rules for the disabled put upon us by broader society to keep reality at bay for them. I am cheerful and creative in my response to new limitations. Particularly weak today? I'll fold my laundry in bed. Have to visit the doctor again? I'll add in an adventure to buy doughnuts. Need to get yet another blood test? I'll fortify myself with sports drinks and go on my lunch hour so nobody even knows I had blood drawn, even though this means I will have to go to bed at 6:30PM when I get home from work. I am "brave."
But I am not. Sometimes I break all their rules. I cry and I rage and I get depressed and stay in bed even when I might be physically strong enough for my legs to support me. I give up on doing my laundry. I retreat. I cower. I am like anyone else. And I am not brave. I just don't want to die yet.
I know I titled one of my previous posts about myasthenia gravis "Adventures in a Brave New World," but that really wasn't a reference to bravery as it was meant to evoke the dystopia I am in by borrowing, somewhat ineptly, from A Brave New World. This post is about actual bravery, and why "You're so brave!" is getting on my nerves.
The most recent reason everybody has been saying I am "brave" is that I had to go to Manhattan for some very unpleasant medical testing called electromyography (EMG). It measures electrical signals sent from your nerves to your muscles with a combination of repetitive electric shock and the insertion of probes with needles. After the repetitive shock portion of the test, each muscle tested had a needle inserted into the center, and then I was required to exercise the muscles with the needles in them so electrical activity could be measured. I also had a specialized form of this test (single fiber) that very few neurologists can perform, that is more or less only done with myasthenia gravis, which is why I had to go to Manhattan. (I had previously tried to get this test done in Philadelphia, you will recall, but their machine broke the day I went there.) Single fiber EMG is done on the smaller muscles of the face, around the eyes. These require very precise needle placement. There aren't very many doctors who can do it. My own neurologist said "This exceeds my skills," and sent me on my way. It was a full day of train rides, tests, and then more train rides for me.
The doctors I saw were very kind, much better than some of the people I've encountered since getting sick. It was painful (obviously) but mostly tolerable. It hurt more on larger muscles because the needles had to be put in deeper, and I was sore afterward for several days in those muscles, but for the most part the little muscles (like the ones in my hands and my face) stopped hurting after a day. As I am told is fairly typical, I nearly passed out during the testing. It was, altogether, not the most pleasant day of my life, but honestly, it was easier to deal with than a particularly horrible MRI I had.
I posted something about this on Facebook, which is usually a mistake but I guess I never learn. I was amazed by the wonderful bedside manner of these neurologists, and that's what I was posting about, rather than detailing the procedure. They had a tenderness about them. They acknowledged that what they were doing was effectively "torture" and did everything they could to make it less awful, even dabbing my face with cold compresses and offering me cake when I nearly blacked out. So I praised the neuroscience center at the hospital I visited. In response to this, the usual suspects, the ones who toss off "I'm praying for you!" but never write or call to find out the effectiveness of the prayers they're supposedly praying, or bother to ask what, specifically, to pray for, responded with, "You're so brave!" (I do not think these people are actually praying, so much as they're displaying performative quasi-piety for all the world to see, but that's a rant for another time.)
"Brave," they say, as if they did not develop my disorder because they lacked the courage, and I, by living an unimaginable life, must possess superhuman fortitude rather than ordinary human frailties. Would I be less "brave" if I chose to die quietly? Is it brave to subject yourself to conscious "torture" when the alternative is the possibility of steadily increasing paralysis and likely death because doctors won't know how to intervene? Are the things we do to save our own lives signs of bravery, or something else? Was I brave when I collapsed in tears on my apartment stairs when I'd gone as far as my body would let me? Bravery implies choices I don't have. To say I am brave--like drive-by "thoughts and prayers"--really isn't meant to comfort me. It's meant to comfort the person who calls me brave. It's a performance for others in which I am needed as a prop, but it has little to do with me.
In their discomfort with the unimaginable--at a body that mysteriously turns on you, with no cure and no good options for treatment, that requires you to undergo unpleasant, painful, or even bloody diagnostic procedures on a regular basis--they feel, I suppose, the need to do something, except there isn't anything to do (so they must believe), and then instead they pronounce me "brave, "make me the other, make me not them, so that the uncomfortable realities don't come breaking through. Except that there is nothing remarkable about me, if we're honest here. I am just someone who drew the short straw. They must do this for themselves, of course. If they understood me as a regular human person they'd have to face the fear that maybe their bodies will turn on them, too, without warning or reason or cure or effective treatment. Just...gone, drifting away, taking with them their dreams, their hobbies, and pieces of their identities.
Sometimes I follow the unwritten rules for the disabled put upon us by broader society to keep reality at bay for them. I am cheerful and creative in my response to new limitations. Particularly weak today? I'll fold my laundry in bed. Have to visit the doctor again? I'll add in an adventure to buy doughnuts. Need to get yet another blood test? I'll fortify myself with sports drinks and go on my lunch hour so nobody even knows I had blood drawn, even though this means I will have to go to bed at 6:30PM when I get home from work. I am "brave."
But I am not. Sometimes I break all their rules. I cry and I rage and I get depressed and stay in bed even when I might be physically strong enough for my legs to support me. I give up on doing my laundry. I retreat. I cower. I am like anyone else. And I am not brave. I just don't want to die yet.
i don't know what to say as i can empathize w/ everything you said. They don't see the tears or the too regular to do daily things. and if you do try to let them into that world they just tell you to stay positive or that they will pray for you. But you are so right that they don't ever ask what for. I guess i just wanted you to know that while my darkness is different than yours i do recognize your pain and i am in the darkness with you. and no you did not say too much.
ReplyDeleteThanks. I think it's really that they can't actually bear to know. <3
DeleteI agree 100% with Anonymous. Our pain may be different but I can empathize with you, your anger and your tears. I empathize with wondering where the follow ups are, the people that are worried about you and praying for you but not really there to listen to you when you need a shoulder to cry on. Please know that I am ALWAYS here for you if you ever need a shoulder. I truly hope that some light will shine through the darkness for you. <3
ReplyDeleteThanks, Sarah! I have some light a lot of the time, and when I don't I try to remind myself that things always change, somehow.
DeleteThis was powerful. I'm sorry you have to go through all this, it sucks. I think a lot of people are only comfortable with serious illness in others if they can hold them up as some sort of brave inspirational ideal. They don't want to think about the realities, the true impact on your life, the everyday messiness, because then it is all too real and uncomfortable for them. I'm always here for you as well. <3 <3 <3
ReplyDeleteIt reminds me of how people who die young are always memorialized as having "loved life." Nobody with a tragic anything is allowed to have been sad about it. Thanks for being my internet friend, Susan!
DeleteI'm so glad you shared this post when you felt ready. It's really unfair for people to avoid acknowledging your reality by forcing this label of "brave" onto you -- you deserve to be heard and supported by others regardless of whether you are acting/reacting the "right" way <3
ReplyDeleteThanks, Julie! Most people probably haven't thought much about what they're saying to people when they call them "brave." Some really do mean well. I suspect others really don't. Sometimes it can be hard to tell the difference. But I hope people who read this who would have called me (or someone else) brave will take it as a plea for understanding rather than a public shaming.
DeleteYou are so eloquent in the way you've expressed this. Thank you for sharing it with your fellow sufferers and those who aren't in a position to understand what you face everyday.
ReplyDeleteThank you so much for sharing this; you've managed to convey such a complex set of emotions so well. I admire your vulnerability here too; it's something I struggle with, but I think it's crucial for real empathy.
ReplyDeleteI think you're right that calling you "brave" is a sort of othering, setting you aside as someone who's a special case. It also feels performative to me, in the way that so many social media interactions can be (many 9/11 posts yesterday felt that way). The way some people need to post publicly about every single tragedy, just so everyone else knows they "care."
If you want to rage or complain or just need an ear, my inbox is open!