Living with Muscular Dystrophy: Katie’s Journey

By Katharine Greener-Hage

I was born in Calcutta, India, where I was born with a rare form of Congenital Muscular Dystrophy called Rigid Spine Muscular Dystrophy, which is a non-progressive form of muscular dystrophy. When I was 3 months old, I was adopted and moved to the United States. I was not officially given my diagnosis until middle school, after having scoliosis. From there I went to see several specialists at John Hopkins in Baltimore and had two muscle biopsies. I also had to start wearing leg braces, a back brace at night for some period of time, and to go on bipap at night. All of these changes occurred during middle school, which made it especially challenging to go to many doctors and know I was different from others around me. It has been hard for others to understand that I will never be able to be fully independent or to do all the physical things that my friends and family members can do. But I always believed that I should still stay positive and appreciate what gifts and talents I do have.

My specialists at John Hopkins are knowledgeable and caring doctors who have continued to see me from youth to adulthood for monitoring and checkups. They are always there for advice or assistance by email or phone for any non-emergency questions, which has been especially helpful during COVID-19 since I am at higher risk due to my pulmonary/breathing issues due to my congenital muscular dystrophy. If I got even a mild case of COVID, we don’t know if my respiratory lungs would handle it okay without going into the hospital. We just don’t know how many risks I should take now. My doctors cannot answer all of my questions or decisions.

Growing up with Congenital Muscular Dystrophy has had a big effect on the way I emotionally and physically think about myself, and on how others often look upon me. I know by having this diagnosis I will always be different from most able-bodied people around me, and it’s hard at times to accept that. I do try stay positive and do the best to live my life and remember there are others out there dealing and living with other illnesses.

I have tried to stay positive and resilient, even though during COVID it has been hard for me to have stay home most of the time. It is hard for me hearing and seeing other people getting to go back to traveling, shopping, eating out etc. when I still have to be restricted to staying at home. But I have continued to keep in touch with friends, make art work and cards for others, do puzzles, watch sports and movies, spend time with my cat, and listen to music.

Even though I have muscular dystrophy I still am a smart, educated person and a hard worker who overcame several struggles growing up but was able to graduate from college with two BS degrees. I became fluent in ASL, living with my sister who is Deaf. But my muscular dystrophy has changed some of the goals and passions I wanted or would do if I did not have it, like living independently on my own, driving, having a full-time job, playing sports, and having kids. I discovered that full-time work was too hard for me to continue, but hope to find work in the future that is right for me.

Having muscular dystrophy has made it harder to be in relationship, connect with peers, and maintain friendships. I have not really dated or met the right person yet. I have some close friends that I can do activities with, but since I don’t drive and they work full-time jobs I can’t always see them, and with Covid-19 have to still be home, too. I was hoping to be married or living with a roommate by now, and not still with my family all the time. One of the hardest things about having muscular dystrophy is knowing I won’t ever be fully independent like my friends and family.

Spirituality has played a significant role in my life. As a sick infant born in India, I was baptized in the hospital because my parents did not know if I would live. I have attended church my whole life and Christian schooling with religion classes and youth activities and retreats. I like listening to Christian music and have attended some music events. I have a Minister who has been coming weekly in person or by phone to talk or just listen in times of need, another person I can talk to who is not a family member. I find it helpful when facing family issues or stressful times. I also have had pastors and friends visit me when I was hospitalized. Listening to Christian music makes me feel better on hard or lonely days. Sharing the word of God with my close friends is also comforting, adding to the good friendships in my life.

One of my fondest memories is from when I was a Muscular Dystrophy Ambassador at several events before Covid-19, such as a special dinner and silent auction in Maryland. I hope to continue to be a disability mentor or ambassador and share my story with others in the future.

In facing my muscular dystrophy, I have learned how important it is to me to show others that I am strong, positive, and important just like everyone else is, and stand up for myself. In sharing my experiences with others, I hope they might get a better understanding what it is like living with an illness.

Katharine Greener-Hage was born in Calcutta, India and adopted when she was 3-months-old. She was born with a rare form of Congenital Muscular Dystrophy (CMD), which is a physical disability that affects her stamina (walking and standing), strength, lung capacity and breathing. She currently lives in Maryland.