When I Look Back at the Portrait of My Healthy Self

There is a portrait of me on the wall. My husband took it with his cell phone when we were at a local restaurant a few years ago. I’ve got a bit of a tan, my eyes are bright and shining, and I’m smiling with a hint of laughter on my face. I’m wearing a pink tunic that has sparkling trim around the neckline. It portrays a confident me, a happy me — a healthy me.

I like to look at it because it reflects a happy time in my life. We were (and still are) very happily married, living in a beautiful lakeside home. Our three children enjoyed successful careers and relationships; four grandsons rounded out the family. I walked five miles every day. I was active in my church and community, had a great circle of friends and lots of activities and hobbies I enjoyed.

These days, I find myself standing in front of that portrait, staring at the smiling woman. I ask her, “Where did you go? I can’t seem to find you now.”

This past June, I was diagnosed with myasthenia gravis (MG). In a span of just a few weeks, I went from being that healthy, active, happy woman to someone tethered to an oxygen tank. I couldn’t walk from the bedroom to the den without stopping to sit down and rest. I saw two of everything. I could not hold my head up; my speech was garbled and I had difficulty swallowing. The worst night of all, I nearly choked to death on a sip of water. I made three trips to the hospital in a span of about thirty days. Prior to this summer, I’d never even seen the inside of an ambulance. I felt like my world had fallen completely apart and that maybe I needed to get my affairs in order.

I am grateful that my primary care physician was on top of things, and suspected MG from the start, ordering all the tests necessary. This was particularly beneficial when I tested negative on the first round of tests, but showed positive for MuSK. He was also able to get me in with a great neurologist at Duke Medical Center.

With medications and some therapy, I am better. I am learning to pace myself, to listen to my body and rest when I need to. Yet, some of the medications caused nasty side effects that I have to deal with – like prednisone-induced glaucoma that caused a bit of optic nerve damage.

I have days where I feel like I am “almost normal” again – and can do nearly as much as I did prior to MG derailing me. But I have learned that I will “pay” for those days if I do too much, by having to stay in bed a day or two to recover.

Instead of walking the five miles a day like I was just a year ago, now I am lucky to make two. My eyesight is not always reliable; I am choosy about when and where I drive. I choke easily. I cannot make plans in advance because I never know exactly how I will feel from day to day, sometimes from hour to hour.

I’ve always been task-driven, with a list of current projects and social activities to do. I’ve had to reevaluate these things because there are some I simply no longer have the strength to do. Social activities pretty much came to a halt, particularly during flu season when I’m on immunosuppressants.

It is almost as though a piece of me has died, or gone away forever. I struggle to find “me” again; I know I am in here somewhere.

I typically look for silver linings — and there have been a few. My husband has been an amazing caregiver – for a while I needed help with everything, including getting dressed and combing my hair. He’s been upbeat and positive throughout this whole thing – which is something I truly appreciate. When I reevaluated my project list, I picked one “to-do” this summer that I’ve procrastinated on for more years than I care to confess: organizing old photographs. I completed that project this summer, and celebrated Christmas by giving my children each an album full of memories. I’ve wanted to slow down a bit, and MG is forcing me to do just that.

Having a rare incurable disease is not something I ever dreamed would happen to me — who would? Myasthenia gravis is an unwelcome guest in my body, and she now calls all the shots.

I still hope to find “me” again, and I sometimes beg the portrait on the wall to please come back, please make my smile feel real again. Like Mona Lisa, she just continues to smile and promises nothing.

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