What Does Awareness Mean?

I’m told that June is “Myasthenia Awareness Month” in a few states that have acknowledged its existence. I have Myasthenia Gravis, so I suppose I should care. The truth is, I’m always a little perplexed about what it means to be aware of an illness. I understand that it’s important for society to accept people with Autism, to get a better handle on their sensory needs. I know what it means when someone says, “I need you to understand what it means for me to be bipolar. Sometimes I can’t help how sad or elated I feel.” I get all that, but so what if the entire United States (let’s not even worry about the rest of the world getting any of this) understands what it means to have Myasthenia Gravis? What does that mean for me and the 20,000, or so, other people in the US suffering from this rare neuromuscular disease?

I suppose it would mean that I could say things like, “I can’t drive today, because my eye muscles are too weak,” and the person I’m talking to wouldn’t ask me to repeat and explain it. They’d just understand that I have these wayward antibodies inside my nervous system that attack the junction between the nerves and the muscles and keep them from communicating with each other. I suppose it might make healthier (or differently sick) for people to say, “I get it. Don’t worry about coming to said event. Just go take your Mestinon and rest your bulbar muscles.”

I suppose MG awareness might cause the many runners I know to not interrogate me when I come to church, or a writer’s meeting, with a cane, because the same thing that happens to my facial muscles, sometimes, happens to my leg muscles as well. I get weak suddenly. Often, I don’t even wake up that way. It just happens as the day goes on, as the northeastern heat and humidity moves in, and before I know it, I have a foot drop at 1pm that I didn’t have at 7am when I woke up.

Awareness would mean that I could live in peace, that people with a lot more energy wouldn’t say things like, “You look so great! I can’t believe you have an illness!” I realize they’re trying to compliment me, and I usually take it that way, but for other (more sensitive) people’s sake, I guess awareness would make them reconsider saying that, because it just makes the person with the illness feel stupid and lazy and weird. Like they’re a sideshow in the circus. You look well. What kind of game are you playing, weirdo? Awareness might stop that.

But I think awareness is not just the responsibility of society, or all the healthy people (if there really is such a thing as a person who is 100% healthy). Awareness is really the responsibility of the person with MG. It’s my job to tell you what it’s like for me to live with this incredibly strange disease and what kind of accommodations I may, or may not, need. I mean, how else would you know otherwise? And awareness comes first in the doctor’s office.

I have lived with MG since 1996, the year I had my first article published in a magazine. I was twenty-one years old, and I became paralyzed and unable to use my respiratory muscles within three weeks time. I developed an additional temporary autoimmune disease on top of that. I recovered and vowed to forget the whole thing. However, it never went away.

I have lived with this disease, basically, my entire adult life, but, because I refused to go back and see my first neurologist, because I kept pretending that I was just a tired young mother,  I was misdiagnosed with several other diseases first, and MS for three and half years. I was pumped full of dangerous medications I didn’t need, and one that was slowly killing me. If I had not educated myself, my neurologist (a Yale graduate), could very well have caused me to suffocate in my sleep with his constant prescription of muscle relaxants—something people with MS take several times a day, and something that people with MG can die from.

One of the reasons I even went down the winding path of misdiagnosis in the first place, was because I didn’t do the research needed to argue with the doctor, not until I became so fed up and sick and tired of being sick and tired, that I finally stopped all meds, walked out of the doctor’s office, called everyone in the place a flake, and started all over again. I never stumbled upon this rare diagnosis on my own, but I went back to my general practitioner and complained. He was horrified at my experience and admonished me for not telling him how much worse I was getting under the care of this neurologist. He sent me elsewhere.

I realize that many people might become angry that I would suggest that I have some responsibility in finding my diagnosis as well, but I believe that I do. I’m not an idiot. My MG-unaware doctor went to Yale, but I’ve studied at Harvard, and it’s not so hard to continually repeat the phrase, “I don’t think this is the right diagnosis. Nothing seems to work for me. Let’s try another approach. I’m getting a second, third, fourth, fifth, etc…opinion, if need be.”

Yes, it’s exhausting, especially if you are already ill, but it’s worse to just accept whatever you’re told even if it’s making you worse

The new, third, neurologist scratched his head. He was clearly irritated to have me sitting in his office with a complicated disease he had never seen before. He was more interested in Alzheimer’s and Multiple Sclerosis, because neither are rare, and there’s lots of money and research behind those two diseases. They have lobbyists in Washington D.C. Whatever I had was clearly boring to him. So, I floundered for three years. I had B12 deficiency, which can cause neuromuscular issues. I had iron deficiency anemia, which can cause weakness. I had those things remedied. But some issues lingered. As an introverted middle child, I was tempted to just sit back and pretend that all was well, so that one more doctor didn’t have to be bothered with my weird ailments. But then I woke up one day with my eyes swollen shut. My GP sent me to a neuro opthomoligist, an eye doctor who specializes in neurological diseases of the eyes.

“You have some nasty allergies,” he said to me. “But have you ever heard of Myasthenia Gravis? You haven’t? Well, here’s some info. Look it over. Learn everything you can. I can’t diagnose you with it, because I’m not a neurologist, but I studied at the Will’s Eye Institute with the leading MG doctor in the US. I’m going to send you to see him.”

Long story short, he looked right at me and said, “Whether you have MG or a Myasthenic Syndrome, you have some form of Myasthenia Gravis. Why did it take so long to get this diagnosis? You live an hour between New York City and Philadelphia. We have some of the best medicine in the United States.”

“I guess I was just unaware of the disease,” I said to him. “And, apparently, so are most neurologists.”

“This is no excuse for them or you, especially them.” he said in his thick Bosnian accent. “But you will need to become aware of it as well, or you will not get better. You’ll have to explain yourself sometimes and tell people why you can, or cannot, do things. There’s no shame in having an autoimmune disease, but you have to acknowledge what you have and live accordingly. You can’t pretend it’s not there, and you can’t pretend it’s the end of the world. Neither of those things are correct.”

I have lived with the correct diagnosis for three years now. I’ll be forty-one in July. I sometimes have days that are so good, I forget that I even have an autoimmune disease. It has actually improved with proper medication and treatment, and there’s a possibility of remission in my future, but I still have to tell friends sometimes, “I know I said I would go to your party, but I can’t do it. I woke up this morning, and I can’t keep my right eye open. By 4pm, I won’t be able to use my eyes at all, and I’ll just have to listen to things instead of see them.” And I just have to take my lumps, because this is part of what awareness is–making myself aware of my disease and making myself aware of how weird it sounds to other people who have never experienced it. It’s okay to admit that it’s not normal to suddenly lose your eye muscles and tongue muscles, that it’s strange to be able to speak at breakfast, but not even be able to swallow a glass of water at dinner.

Awareness is really everyone’s job then, I guess. It’s kind of like following road signs when we drive. We have to prepare for the unexpected. So, June is Myasthenia Gravis Awareness Month in some states, and I have MG. I’m not ashamed of it, and I’m not proud of it. But there it is. It’s my reality, and since you live in the same world I do, it’s your reality, too.

tiffaniTiffani Burnett-Velez has been a freelance writer since 1996. Her work has appeared in Pennsylvania Magazine, Country Discoveries, Yahoo! News, Health.com, Toe Good Poetry, and other online and print magazines in the US and Europe. She is the author of three novels, Budapest, A Berlin Story, and All This Time. You can read more about her work on her blog, This Writer’s Life (http://tiffaniburnettvelez.wordpress.com).

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