A Myasthenia Gravis Health Story: Cate’s formula for remission despite life’s stress
Written by Laura Will
Cate’s unexpected diagnosis
Cate knew something was not quite right when she started having trouble getting to the end of bedtime stories. She would be reading to her toddler daughter, and facial weakness would set in. She was healthy, or at least had always been healthy. But over the next couple weeks, her evening reading fatigue progressed quickly, landing her in the ICU - unable to talk or swallow or even catch her breath.
While terrifying at the time, the acute onset of her symptoms led to a relatively speedy diagnosis of Myasthenia Gravis and initial treatment. She was placed on steroids and pyridostigmine: a two pronged approach that inhibits the body’s inappropriate immune action in the neuromuscular junction and increases the amount of available acetylcholine. Cate’s body responded to this treatment, returning her muscle strength and stamina to a level with which she could baseline function.
Living with Myasthenia gravis
Cate refers to MG as a “snowflake” disease. Each person has a unique presentation and response to medications. Cate feels lucky. Despite the limitations of her not-so-great health insurance, she was able to link up with a neurologist whose clinical interests focused on Myasthenia Gravis, and he was running a clinical trial that made a new, more targeted, treatment option available. Cate has now completed three round of this trial medication, and remains in remission since October 2022.
That being said, she is still working on weaning off of the steroids, still feeling the negative effects of being on them long term, still in close contact with her neurology team, still living in fear of a recurrence of symptoms. Outside of medical appointments, the last year has not been easy on a personal level. On top of navigating to remission, she has also navigated through a marital separation, moving homes, and often solo-parenting a toddler. Knowing that a major trigger for relapse is stress, she proactively scheduled drug infusions for the week after her move date. However, she was thrilled, and slightly surprised, at her body’s ability to remain stable through these turbulent times.
Practicing the art of mindfulness
What’s her secret? It is how much she has focused on her mental health. She leaned into mindfulness practices, folding them into her work day and time spent parenting. She does breath work both on her own and with her toddler, and takes relaxation time-outs together. She is open about seeing a therapist and taking a low dose antidepressant, to keep the lows from getting too low. Remission is the goal of course, but it is still uncertain ground; and so, the key has been learning skills to live in uncertainty with grace, one breath at a time. Is it all rainbows and butterflies? No - but mental health practices help her acknowledge the fear and stress, and keep them from overwhelming what is good.
How do you remember what is good? Well, Cate has problem-solved that too with a daily gratitude practice, where she writes a list of everything she is grateful for that day. To hold herself accountable to this daily habit, she shares it with close friends.
It’s a strange thing how struggle opens up the world of gratitude and compassion. There are untold numbers of little blessings and untold numbers of people struggling through the same messy emotions and scary symptoms. The habits that support her mental health have gone beyond returning to the old version of herself, before symptoms and before mindfulness, suffering, compassion, and support. Meet Cate 2.0.
Cate worked for Hearst Magazines in New York City for about 8 years before moving to Los Angeles and beginning her freelance career as a prop stylist and set designer in 2021. Cate currently lives in Venice, CA with her 3 year old daughter and two dogs. They spend much of their free time at the beach, Cate's favorite place for healing and relaxation, even when chasing a busy toddler around.
If you or your loved one is suffering from myasthenia gravis and would like to learn about the latest research in MG, click here.
