A Basic Definition
Myasthenia Gravis, or MG, is a neuromuscular autoimmune disease. Achetylcholine is the chemical that delivers the message from your nerve to your muscle. People with MG have abnormal antibodies that block, damage, and/or destroy the acetylcholine receptors that tell the muscle to contract (or move). The lack of working receptor sites then causes muscle weakness due to the receptor deficiency at the neuromuscular junction. MG literally translates to “grave muscle weakness”. At this time there are two testable antibodies associated with MG, and at least two more that have been identified (but are tests are not widely commercially available). There are also seronegative patients, meaning that they have antibodies not yet defined as associated with MG. Their blood work comes back “negative” for the testable antibodies. I am sero-positive for damage + destroy (also known as binding + modulating), and am one of the roughly 10% of patients with juvenile onset MG.
MG affects all voluntary muscles including those used to breathe, see, walk, and swallow. There currently is no cure and no known cause. There are treatments, but they have long term side effects and can be extremely expensive. Treatment options include: acetylcholinesterase inhibitors (Mestinon), steroids (Prednisone), steroid-sparing agents such as immune suppressants (Cellcept and Imuran), IV and subcutaneous immunoglobulin, plasma exchange, surgery to remove the thymus gland (thymectomy), and sometimes chemotherapy (such as Rituxan or Cytoxan).
MG is often referred to as the “snowflake disease” because no two immune systems function identically. This makes all MG symptoms and treatments unique to the patient. What works for one patient may cause distress in another patient. It can complicate finding adequate care.
Diagnosis + Long Term Management
I was diagnosed at a very young age. I was about 10 when I first had symptoms, and 11 when we finally received my diagnosis. I was lucky in some ways, because I was just forming my personal identity at that age. However, that does not mean I was spared the trauma of feeling like my life was crumbling around me. My life felt worthless, and I was a prisoner in my own body. I couldn’t do the things I once loved.
Before MG, I was a highly competitive and active child. I loved playing outside, riding my bike, swimming, taking dance classes, and running. I took art classes, played the viola, piano, and oboe. When the MG symptoms worsened, I was sometimes sleeping 18+ hours a day. I fell frequently while walking. I couldn’t hold my arms up to brush my hair. My speech was nasally and slurred. My vision was blurry, which caused dizziness and headaches. Sometimes I saw double of everything. My hands could barely hold a pencil. I couldn’t chew or swallow food. Sometimes I struggled to breathe. At that age, I really wondered if I was dying. My symptoms fluctuated in timing and severity, so it was difficult to describe what was happening to my body.
Often, doctors do not prepare their patients enough for the emotional trauma that coincides with a diagnosis, and I mean this for both children and adults alike. Many of us have to grieve the loss of a life. We bury the past and let go of our plans for the future. We have to grieve the end of a season of life and usher in a new season of endurance that many of us are not equipped to manage. We also have to grieve the loss of a future and expectations that we were not prepared to release from our grip.
I haven’t always dealt with my MG well. Honestly, I harbored a good deal of anger for many years. I didn’t understand how the God who created something as beautiful and delicate as a field of wildflowers could also allow something so ugly into the world. At that age, I didn’t have the emotional capacity to fully understand that something that is created as “good” can have “bad” direction, and that those of us who suffer are often caught in that tension.
I gave up music because my hands didn’t work well enough to play the piano or viola anymore. Let’s be honest, I was terrible at the oboe so that one didn’t hurt very much to give up. During the diagnosis process and time immediately following, my mom homeschooled me. I was out of school for 2 full school years, and remember begging my mom to let me go back to school. It felt cruel and unfair to be so different and isolated. After the first year of homeschooling, I had a thymectomy. The next year was spent recovering and getting to a more manageable baseline. The following year, I was able to go back to school and was on a modified schedule until I graduated high school.
I went into remission in 2008, moved to California, and then to Boston, and spent my summers working with Young Life in North Dakota. I had a relapse of symptoms in 2010. It was something I was totally unprepared for. In all the years before, we had never explored the possibility that remission would be temporary. We were so focused on getting me into remission, we didn’t have a plan for if it would end.
Somewhere after that relapse, shortly after having to withdraw from my study abroad program, I promised myself I wouldn’t let MG make me miss out on anything else. I missed a lot of my junior year of college, flying back and forth between school and my neurologist/hospital for treatment. I’ve also lost a few friends along the way who didn’t understand, or who thought MG wasn’t real. I was angry again. Making that promise to myself wasn’t helpful because no matter how much I plan, no matter how much I rest, no matter how well I’m doing on my medication dosage, I will still miss out.
That is part of life, especially with MG, and it was destructive to allow myself to be in that cycle of frustration:
missing out – anger – upset – more symptoms from emotional stress – more missing out
Now, after more than 15 years with MG, I still have a hard time making sacrifices due to my condition but I have less anger and bitterness. I also have less resentment towards other people who do not understand what it is like to live life with a chronic illness. I have learned that my bitterness towards others isolates myself more, which exacerbates my feelings of being left out. Because when I put up those walls, I am literally leaving myself out.
I try not to go to the dark places too much, but I do have my fears. When I relapsed in 2010, I remember crying into my mom’s arms and asking her if I would ever be able to be a mother. I’m afraid that the medicine I’m on will make it hard or impossible for me to have kids, or if I do, they’ll have complications from my antibodies or my medication. I’m afraid of my medication causing cancer, because I know it’s a risk. I’m afraid that my medicine will stop working one day. I’m afraid of crisis, something that I haven’t experienced yet (MG crisis is when the diaphragm is affected by the disease, and you stop breathing). I’m afraid of dying before I live the width of my life here. I’m afraid of ever being without health insurance. Sometimes, I’m afraid of being different. Other times, I’m afraid of how complicated life with MG is.
Finding Hope + Purpose
Art is my healing process. The only thing I could really do when I was first diagnosed and so weak was doodle, paint, and type. I did crafts as I felt able – it was therapeutic. I wrote a lot and listened to audiobooks.
I still managed to make it through 4 years of art school even with MG rearing its ugly head in the middle of it. My artwork is a product of the intimacy between making and healing. It is about process. The act of creating became one of the most important parts of my treatment. Living with MG has informed my worldview and perception of self. I am fascinated by the intimacy of strength and fragility, permanence and transience, and ambiguity and certainty. They are, in each instance, each two sides of the same coin. One can’t exist without the other.
I hope I keep making, whether it is in painting, photography, food, etc., that I continue moving forward in unpacking how “the self” relates to community and the very idea of authentic identity.
I find a lot of hope in Travis, my husband. I didn’t think there would be a person who would want to or be able to take on MG. I’ll quote myself from an older blog post here,
“There was a time not long ago when I couldn’t imagine inviting someone in to my life to love me and know me, to take my broken body as their companion. I couldn’t imagine sharing the pain of losing remission, of residual symptoms, of days hooked up to intravenous medication, and how awful some side effects can be. I couldn’t imagine how amazing and wonderful the man would be who would want to take this mess on…. who would dig through the dirt, research medications, motivate me, and do everything he could to make me stronger. I couldn’t imagine how he could feel knowing that things I once loved to do were just out of reach. I couldn’t imagine the patient servants heart that God was preparing me to share my life with.”
I also find hope in cooking for people I love, enjoying good wine, hiking, traveling when I can, taking care of my rescue dog, participating in online support groups, and talking to people that want to raise awareness for invisible illnesses + rare diseases.
If you would like to learn more about my journey with MG, read the blog posts under the “health” category. If you have specific questions, I am an open book willing to email, text, or chat over coffee. Just let me know!