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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.

  Follow this journey on Anita Tarlton Blogspot