Reflecting on my past brought light into the darkness of MG
A columnist realizes there are some things MG can never take away
Spring has arrived here in Texas. The trees outside my windows have lost their winter grayness and once again have turned my home into a treehouse. It’s the time of year when poets and songwriters tell us that new beginnings, and maybe even new love, are in the air.
This year, I don’t feel the usual excitement or the springtime rush of energy. The days have lengthened, which usually lifts my spirits. But try as I might, I haven’t been able to shake dark feelings. When I reflect, I see that possibly this darkness is due to my ongoing struggles with health insurance, the isolation that comes with living on disability insurance, and the discomfort inherent in not knowing when I’ll find a treatment regimen that will bring my myasthenia gravis (MG) symptoms under control.
A rare disease like MG can take over your life. It happened to me.
When I get up in the morning, I check my clock to see how much sleep I got. (MG won’t tolerate too little sleep.) Every four hours, my phone plays a song to remind me it’s time for one medicine or another. Whether or not I’ll be able to go to the gym depends on my energy level. In fact, all other plans for the day require an energy check, too. I could go on listing the other ways MG dictates my days, but I think my point is clear. MG can make even the simplest task difficult.
In the past month, I’ve had to pass on a wedding celebration, two dinners with friends, and a reunion with former students and faculty. Were it not for MG, I would’ve attended those events. It would’ve been great having some food and drink and catching up on days past.
I reached a point where I was fed up. What’s the point of controlling my symptoms if the product is a narrow life, empty of the social interactions I once had daily? So when an invitation to a gender reveal party arrived, I was determined to be there.
Since my MG diagnosis, I’ve been conscious of the physical changes in my body. I’m heavier, less nimble, and appear older. These fears have kept me from several events. But this time, I wanted to conquer the fear and shame. I would change my MG mindset.
Finding color in the darkness
I went to the party and spent two hours surrounded by incredible women and men, most of whom were former students of mine. Some of them met in one of my classes and now had a life together. There were babies everywhere. In my mind, the parents of these little ones were still shy, unsure teenagers. But here they were, responsible adults with careers and families.
We sat together under a beautiful Texas sun. As we ate and drank, our conversations drifted back many years. My mood lifted enormously.
Then it came time for the reveal. A piñata hung from a tree, with the dad-to-be tasked with breaking it open. After a few swings — and lowering the piñata — mission accomplished. A spray of pink confetti broke out and covered the ground. A little girl will join us this August.
Soon after the reveal, it was time for me to leave. With unsteady gait, I walked around the yard and said my goodbyes. I was overwhelmed by what many told me: They shared how something I’d said or done had affected their lives for the better. They remembered events I’d long forgotten. Two people shared how they’d given up hope and considered ending their lives, but a kindness I’d shown helped them go on and find the counseling that healed them.
I find it funny that what I thought were mundane, ordinary days were life-changing for others. Little things, such as asking someone how they were, had been incredibly important. If life is a mosaic of sorts, maybe I’ve created more tiles than I once thought.
On the ride home, the dark clouds didn’t suddenly lift. But something is different. Now I see that even if I’m not out and about daily, I’m still having an impact on my world, and the larger one beyond it. The goodness I was able to do before MG is still rippling out and changing lives for the better. MG can’t take that away.
There’s still a piñata left for me. At some point, I’m going to take a swing at it. When it breaks open, there’ll be a wonderful spray of color. The dark clouds won’t be able to compete.
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.
Well said Mark. Am still in the dark of MG ,or not MG, as sero negative which the neurologist doesn't believe in since I haven't had a crisis requiring vent. I am on mestinon " for comfort". The psychological insult is nearly as bad as the disease limitations.Thankfully a coworker, also a nurse, has gone out to lunch with me a few times thus mitigating the terror of choking or falling. Has been a year since got disability and feel rich!! 4 yrs of not being able to work, living on $600/mo and food stamps was scary. Poverty, weakness, whole medical process, disability process sure made waking up each day hard, was convinced no one else was going through this. Took a long while to find other sero neg MG people who are living in better form.