Chasing dreams that myasthenia gravis won’t allow
I'm physically unable to do the activities on my childhood bucket list
When I was a kid, I had a list of things I wanted to do when, as the adults used to say, I’m “old enough.” I haven’t forgotten that list, because now I am old enough.
At 26, I’m still young, but I’m an adult, and plus, I have my own money now.
My list isn’t risky or extreme, and includes things like horseback riding, playing the piano, taking private painting lessons, and wearing high heels. (Not too high, of course; gotta stay classy.)
When I was growing up, my parents thought horseback riding was too risky, piano lessons were too expensive, and private painting classes weren’t even an option. I did at some point manage to wear high heels on a couple occasions at weddings and receptions, but my legs said, “Too heavy,” and my ankles screamed, “This hurts!”
I always return to the same pair of orthopedic shoes. Yes, I hate it. I keep buying the same style over and over because it’s the only one that truly helps me walk with myasthenia gravis, fibromyalgia, and flat feet. Not very classy.
I’m writing this column today because I told my boyfriend that I could finally afford piano lessons, and I heard hesitation in his voice: “Can you … ?”
I’m angry and frustrated because he’s right. It’s been six years since I could write more than a paragraph without my arm becoming too heavy and my wrist hurting. I don’t know how I forgot about that. Not funny.
As for horseback riding, again, I have the money, and the stable isn’t far from home. But I have back problems. I fell down the stairs back in December, and while checking for injuries, the doctor discovered that I had a spinal malformation and compressed vertebrae. I will not make a fool of myself by asking if it’s OK to climb on the back of a horse just because I think it looks cool. Not happy.
Can I face this deception?
I don’t really want to think of solutions right now, but I’m writing this because I tend to find calmness and resilience in telling my story.
What I’m currently thinking about is finding ways to make painting work so that I can paint pictures of high heels, horses, and pianos. Since group classes won’t work, maybe online classes from my couch will? Or a private teacher who understands my challenges and can adapt the postures to my tired body?
Maybe the horse riding club would allow me just to be there. Perhaps petting and feeding the horses or some other purpose might help?
For shoes, I choose not to care as much anymore. I’m just a couch potato who loves comfort.
For the piano, I’ll exchange playing for watching documentaries about pianists and finding a way to attend piano events in my town. If I can’t be the artist, I can still enjoy the art.
Writing this helped calm my anger, and the solutions seem possible. I just need to keep a positive mindset, even though it feels unfair. What else can I do?
Perhaps I’ll discover other hobbies, too. I’ll let you know if I do, promise.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Sharon Hawe
Thanks for this light hearted view of rethinking our bucket lists with MG. I just returned from treating my family to a trip to Disneyland and the San Diego Zoo. I learned an important lesson to allow a day or 2 of complete rest in-between days of activity because a week after I returned, I still haven't recovered my energy. That's despite a year of training in preparation (balance, strength, walking, Tai Chi exercises), I arranged mobility assistance at the airports and used door to door car services and I used a scooter at the park; I still did 12,000 steps at the theme park. I planned a day of rest (taking the train to San Diego and taking a harbour tour) but my leg and arm muscles still gave out at the end of day 2 and on day 3, I had to rest at the hotel instead of going to the Zoo. The year of training wasn't wasted because I didn't trip and I only had difficulty with steeper stairs.
I really appreciate all the great tips I gained from this newsletter and the MG Forum about being upfront about needing assistance like renting a scooter so you can prevent/delay fatigue rather than waiting until you're fatigued. Bouncing back from MG fatigue is rarely instantaneous. My family was fantastic - lugging my suitcase for me, bringing food in, dropping me off at the entrance, etc. and they were insistent that I tell them what I needed so I could enjoy the vacation, too.
Susan Mark Landis
Sarah, I'm 67 and just diagnosed with ocular (for now) MG. My case is light. So far.
I just wanted to mention that GANTER shoes (European) have been great for my feet with many problems. I've had flat fee and other foot problems since I was a kid. I wore good walking shoes and that was ALL. I found this brand locally a few years ago. They don't have heels but they are comfortable. I am in no way associated with these shoes, just amazed to find something to wear other than black walking shoes.
Susan, USA