Myasthenia Gravis Does Not Stop Us From Making Memories
Last updated: March 2023
Since my myasthenia gravis (MG) diagnosis, I have endured my hands going weak when I use them intensely. I have been on the road towards remission since my diagnosis. Yet, cooking has been a continuous, frustrating reminder of my weakness.
Now, I wouldn't say I like cooking, but right before I got MG, it was something I was learning to enjoy. You may be familiar with this discouragement from symptoms reappearing when you thought you were on the path to improvement.
If you have motivation, do it
A few years after my diagnosis, I finally had that "voilà!" moment when baking an apple pie. This pie ended up being one of the most significant wins since MG. Who would've thought a simple thing could bring so much joy? And it wasn't the taste that had me overjoyed, although it was delicious!
My family was out busy all weekend. Baking apple pies sounded like something my boyfriend and I could do to surprise my family and enjoy quality time with them when they returned.
I had yet to attempt baking a pie with MG. I used to use the pre-made dough for the crust. But I am now trying to go vegan, so I made a pie crust from scratch. I didn't account for how much strain would be on my hands. If I remembered how difficult this would be with MG, it wouldn't have been my go-to fun activity.
Hand weakness dilemma
I had to knead cold, firm butter into my flour mix with a fork. Once I finally got the butter broken down, I used my fists and knuckles to progress faster. It took pressing all my body weight into my hands to get the strength I needed to mix the dough evenly.
My hands were getting weaker and shakier by the second. I experienced the same weakness I always do when I exert my hands. Without rushing myself, and after a little break, I peeled, cored, and sliced all the apples.
I had my wonderful boyfriend's help to make the second pie, as that was going to push my limits. But the weakness didn't make me feel defeated, angry, or irritated this time. Why? Growth of my perspective over the past 2 years.
Change of perspective
Next time, I will likely look for a recipe that doesn't require such complex use of my hands. But I was able to do it. I made a handmade pie from scratch with MG. I completely surpassed my expectations of what my life had to look like once I received a diagnosis.
MG doesn't limit our abilities to create memories. We have to have a shift in perspective of the moments that are meaningful enough to remember.
The me that was struggling and defeated when I was first diagnosed, I wish she could have seen a glimpse of this moment. It would have given me so much relief and hope. Celebrate what you can accomplish, and don't be afraid to ask for help with the rest of it.
How often do you experience MG exacerbations/flares?