By Misha Grayson Coleman, as Told to Michele Jordan
I’ve always been interested in health. So when my own health began to fail at a young age, I knew I’d have to write a new way to lean into my dreams.
I was living my life as a young woman in her 20s and early 30s. I was working, hanging out with friends on weekends, and traveling. I had my best guy — my retriever mix, Koda — and life was good. But then two words would change my life: myasthenia gravis.
Broken Smiles
I’ve always not felt quite well — even when I was younger. I’ve always been easily stressed out. I didn’t have an official diagnosis of anything, but in the back of my mind, I always wondered if my health might take a turn down the line. Still, I had no clue how things with my health would decline.
In 2021, I was back from traveling, and I noticed my smile wasn’t working. It was very strange and not a symptom that was on my radar for anything. Everyone thought it was nothing. I thought it was nothing since I had no other symptoms. But then I fell down the stairs and still dismissed it.
Then I started feeling weakness in my arms and legs. I was out with friends one night, and I went to the toilet and couldn’t lift myself back up. The restaurant manager had to help me. I went back to the table and was quite upset.
My friends chalked it up to me having a few drinks, but that wasn’t it at all. Soon, other symptoms crept in, and I struggled to comb my hair and put on makeup. I assumed it was MS because many people are somewhat familiar with those symptoms. I was on a wait list to see a doctor, and since my symptoms were getting worse, my parents paid for a private doctor to explore my symptoms. The neurologist took one look at me and said, I think I know what you have. He noted that my eye was drooping on the side — something I hadn’t noticed. After some more testing and blood work, he confirmed that I had something I had never heard of before: myasthenia gravis. It’s a neurological disease that is very rare.
The minute he said it, I was researching it. He said you can’t get rid of it, but I believe. I’m a hopeful person.
Falling and Getting Back Up Again
My symptoms were bad, but not fully debilitating. I was still working, and my boss at the time was very understanding. Right away, my doctor put me on high-dose steroids, which really helped. It was like my muscles were waking up again. I really couldn’t do much until that set in. I believe in both traditional and holistic approaches, so I reached out to a functional doctor as well. We talked about my gut health, getting rid of heavy metals, and balancing my hormones. I felt like I had some control over a very unpredictable disease.
But no one in my circle knew how serious it was or how bad it could get.
In early 2023, after losing my job and ending a 10-year relationship, my body rebelled. I found myself on a downward spiral. I was trying to get up the stairs to my home, and I couldn’t walk. I had to crawl. I fell from the top of the stairs to the bottom with only my dog Koda to keep me calm. The next thing I know, I’m in an ambulance heading to the hospital. They said I was lucky my muscles were so loose because it may have saved my life when I fell.
The months that followed were some of the hardest of my life. I had several rounds of this with my health. My parents had to help me do just about everything. I moved from an independent, regular young adult to someone totally unable to even lift a water bottle to my lips. My parents made my food, walked my dog, and helped in so many ways. My dog kept me comfy. I’ll never forget the squeal of delight he had when I came home from the hospital. My friend, Aimee, kept me connected to the outside world with funny voice notes. Other friends would check in, but didn’t always know what to say. Oddly, this situation wasn’t ideal, but it brought me closer to my parents. In these low moments, you get to see who truly has your back.
My Body, My Teacher
I needed some aggressive treatment to rebound from basically being bedridden. I needed IV therapy and am now taking an inhibitor and I’m participating in a clinical trial. Slowly but surely, my health has improved. I’m not 100% and I know MG is unpredictable, but I’m able to do more things for myself.
I have learned so much in these past few years. You have to grab every day by the hand. Listen to your body. Take time to rest. I realize how much stress is a factor in this. It gave me a more positive outlook and made me more grateful.
Everyone’s body responds differently to MG, but I encourage people to hang in there. I’m a testament that things can get better. At times, it feels very unfair and unjust, but it makes you appreciative of small things. After not being able to walk for a time, I was so grateful when I could walk again. I didn’t get as annoyed at what seemed like silly things anymore — like traffic. I stopped sweating the small stuff.
I Am Resilient
Looking back, it’s put a lot of things for me in perspective. I felt sorry for myself at first. I asked a lot of ‘why me?’ After all, I made healthy choices for much of my life. I didn’t smoke. I didn’t eat poorly. I didn’t eat rubbish. But I’ve gotten to a place where I understand things happen to everyone. We all struggle with different things. This happens to be my story.
I am the same Misha as I was before MG, but I’m stronger. This has helped me see how resilient I am. But I'm still myself. I’m still an animal lover. I love to learn. I’m currently taking ukulele lessons. I craft and paint and am still into bio hacking — red light therapy, infrared saunas, and the like. I love true crime documentaries and Halloween. I’m hopeful to go into remission and be able to live a normal life and be in remission. The world is already hard enough with a medical condition! I want to do things others my age are doing. I’d like to find love, get married, and have kids one day. Until then, I’m taking it one beautiful day at a time.
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SOURCE:
Misha Grayson Coleman, Leeds, U.K.
