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.
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 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:
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