The Portrait


There is a portrait of me on the wall.  My husband David 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, 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.  

It is a good picture, one I like 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 circle of friends and lots of activities and hobbies that I enjoyed. 

These days, I find myself standing in front of that portrait, staring at the smiling woman.  I speak to her, asking “Where did you go?  I can’t seem to find you now.” 
This past June, I was diagnosed with Myasthenia Gravis.  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 all the first round tests, but showed positive for MuSK -- Muscle Specific Kinase.  A small percentage of MG patients fall into the MuSK category.  He was also able to get me in with a great neurologist at Duke Medical Center. 

With medications and some therapy, I am better now.  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 some irreversible optic nerve damage. 
 



I have days that 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. 
Hey, at least I have some great guardians, right?  

Instead of walking the five miles a day I was getting 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.  When I am tired, 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 re-evaluate the projects because there are some that I simply no longer have the strength or endurance 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. While the medications I take are thinning my hair, I’m blessed with really thick hair so it is not as noticeable as it might be, plus I haven’t had to shave my legs in six months!  
When I re-evaluated 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 albums 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 that I ever dreamed would happen to me -- who would?  Myasathenia 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, though, she just continues to smile and promises nothing. 



A similar version of this story was featured on "The Mighty" -- a social network for those with chronic illnesses.
Check it out here:
https://themighty.com/2019/03/looking-back-portrait-healthy-self-myasthenia-gravis/?utm_source=engagement_bar&utm_medium=facebook&utm_campaign=facebook_share&fbclid=IwAR24aisjqF1UDgbxKIzi5J65a7SS2CnsZppR6KnU-MHT92mobaHyu57VDCg

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