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Why I'm Taking a New Honest Approach to Living With Myasthenia Gravis

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As I walked out of the outpatient infusion center in mid-town tonight, I realized something. I may have graduated today. Today may be my last infusion. The last day I sit in a chair for six hours hooked up to an IV. The last time I commute via two subway trains and eight blocks for treatment. The last time I show up to work the next day with mysterious deep purple bruises on my arms, or a sleeve hiding a catheter.

I was diagnosed with myasthenia gravis in the fall of 2010, and started IVIG (intravenous immunoglobulin) treatments the following winter of 2011. Myasthenia gravis is Latin for “grave muscle weakness.” It’s a chronic muscular autoimmune disease for which there is currently no cure. Basically, the synapses where your nerves talk to your muscles don’t work properly in a person with myasthenia. There are days when it feels like I can’t move my arms, or my legs feel like I have been hiking for seven miles in the mountains outside Las Vegas. (I know what that feels like because I used to love hiking there before I was diagnosed.) Thankfully, those days are now few and far between.

But even with these symptoms, and treatments, my life still happened. Was it the life I expected at 38 when I was diagnosed? No. How do I feel? It’s easier to give you my stats first:

– Cost of infusion drugs for treatment = $2.7 million

– Attempts to put in an IV = 439

– Infusions = 177 (or 973 hours hooked up to an IV)

– Work calls made while hooked up to an IV = 37

– Workshops and presentations led at work = 28(-ish)

– Number of times I’ve cried at work in front of someone = 11(-ish)

– Number of different bosses (at the same company) = nine

– Migraines caused by aseptic meningitis, a side effect of the infusion drug = six

– Number of times I’ve gone out on a date = five

– Number of times a day I take medication = four

– Weddings attended = three

– “Aunt Meghan Camp” summer weekends with my niece = two

– Parents who have died = one, my dad.

– Number of 40th birthdays = just the one

– Percent of worldwide population with myasthenia gravis = 0.02 percent

It’s easier to hide behind the numbers. Reality has always been harder. How has living with this disease (and its treatment) impacted my life? Truth? I work incredibly hard not to think about it. I am such a master at denial and compartmentalization and subterfuge that even my closest friends and relatives don’t know how I feel. Rule number one in my book over the past six years: don’t let them see the vulnerability. Why? All the answers come down to fear. I don’t want to lose my job. I don’t want to lose my apartment. I don’t want that person to stop being in my life because I’m too difficult. I don’t want to lose my independence and freedom and sense of agency. I want a future. I want the life I thought I was building when I got my new job in 2010, six months before I was diagnosed.

Honestly, how I feel is complicated and ever-changing. I am eternally grateful for a supportive employer, for “platinum” health insurance coverage and for meeting the neurologist who diagnosed me and has treated me with respect and humor and care. I have felt trapped by my life: Could I consider leaving a job or a city because what if that meant I lost this level of care? And I’ve felt resentful, angry and bitter. The “why me?” days. The “what doesn’t kill us makes us stronger” days. And then there are the days I’m bored. Yeah, bored. Like life has passed me by.

Here’s the thing, life didn’t pass me by. I’ve been living it the best way I’ve known how. That’s what I have learned over the last six years. And if there’s one thing I have learned in the last week, it’s that for us to truly know what our friends, our neighbors and our loved ones are thinking and feeling and believe, we have to be honest ourselves. We need to share our struggles and our points of view and our hopes and our dreams and what matters to us. We need to share who we are. Not being honest is an injustice. It makes someone “the other.” And after this election, we need to prevent “the other” from being something sinister and unworthy of our trust. So, all that denial and compartmentalization and subterfuge I’ve been doing… It’s over. It’s for a different time. Today is a new day and it starts with embracing all the different parts of who I am. Someone who’s sick. Someone who is driven and ambitious. Someone who wants to build a life with someone and get married. Someone who wants to be there for the people she loves. And wants them to be honest with her. Even when it feels hard. Because we are stronger together.

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Thinkstock photo via lolostock.

Originally published: May 23, 2017
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