My name is Stefanie Shea-Akers, and I’ve lived with myasthenia gravis (MG) for over a decade. I live with a severe, refractory form of the disease and have experienced every up and down the disease has to offer. Through it all, I still try to focus on quality of life and finding joy where I can. I focus on trying to remember my humanity, outside of being a professional patient. Trying to find meaning with this disease means I’ve had to accept reality, reframe what gives me meaning and work hard not to surrender my identity.
More than a diagnosis
In my former life, I was an academic and worked as an English professor at a community college. It was my dream gig. My degrees are in literature, and I loved the community college population, working with adults and students who faced real obstacles to getting an education but worked hard to succeed. I have also worked as a musician, an artist and a gymnastics coach. Those are all still passions of mine. I create watercolor art and have an Etsy page. I was a singer-songwriter and played at many different venues. Although I can’t sing or perform anymore, I can still play the piano for a short amount of time. I am a big college gymnastics fan and during season, January to April, is my favorite part of the year. I’m a politics junkie and still love learning new things every day. I read every single day, no matter how rough the day is. I’ve been sharing my experience as a patient and doing advocacy for over a decade as well, and that has given me purpose.
I’ve learned it’s important to remember your identity with rare disease because nearly all of my life is spent doing infusion treatments, going to appointments, managing my care, resting and recovering, etc. The medical spaces and experiences can feel dehumanizing; my identity can be stripped down to just how my body functions and getting through treatments. I’ve gotten used to the perpetual vulnerability and uncertainty of living with a refractory form of this disease. But I try to carve out time and space to find small joys wherever I can every single day.
I love getting to spend time with my husband. We watch a lot of sci fi shows, play Mario Kart, listen to music, cruise in our 1964 Valiant and laugh all the time. Last month was our 19th wedding anniversary. We’ve been together more than half our lives. He has been through all of this with me and is also my caregiver. He didn’t choose this either, but we’ve faced every battle together.
I also like to spend time with friends and family when I can. It’s hard to get out to see people, so I’m always grateful when anyone comes to visit. When our nephews come over, it’s constant laughs. Our friends and family have also seen and lived the ups and downs with us. I’m eternally grateful for their support and patience they give us.
A reminder that there’s life to live
10 months ago, I got a serious infection and survived sepsis. I was hospitalized for a week, and it was one of the most difficult battles during all the last decade. But it reminded me I need to do more to focus on what brings me joy and find ways to experience life more. I went to a concert again few months ago. It was the first concert I’ve been to in over a decade. I’m trying to prioritize quality of life as much as I can. I still have constant work every day to manage my condition, but I want other patients to know how invaluable it is to remember your passions and values — remember your humanity outside of illness and your identity. That is your guiding light through the storms and dark periods of living with a rare disease.
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