How I’m Living on My Own With Duchenne
When I went off to school at the University of Southern California (USC), it was the first time, like many other 18-year-olds, that I would be living away from home. It was an especially huge change for me because of my Duchenne muscular dystrophy and my reliance on my parents to help me.
After graduation, I moved to Washington, D.C., to intern at The Washington Post for five months. It was a new, bustling city, and this time I only had one roommate, as opposed to the 13 I lived with during my junior and senior years at USC.
When I returned to Southern California, I lived with my parents for three years. Now I have my own apartment with a roommate and two assistants who help me throughout the day.
I’ve always wanted to be independent, and living on my own is one way I feel I can maintain that necessary separation from my parents. Living on my own has been a multistep transitional process that required me to find and manage new caregivers, land a perfect roommate who was willing to help me, and learn how to balance new responsibilities.
I understand the meaning of independence will differ depending on who you are and where you’re at in your disease progression. But for me, it was important that I find my own space separate from my parents, as much as I love them and appreciate what they have done for me. Any other 25-year-old will understand.
If I were to reach my goal of living alone, I would have to take charge of the situation. The ball was in my court. I first had to find solutions to the obvious problems that could prevent me from living alone.
My parents aided me with a lot of small things. They helped me get out of the shower in the morning; they fed me; they made my bed; they organized my room; they gave me my pills; they stretched me daily. I knew I needed to find a few people who could do the same thing. I learned that you can never get away with having just one personal care assistant, either. Having a backup plan in case one gets sick or has an emergency is vital.
I went through the state of California to see if they could find an aide. The department that deals with independent living could help us pay an assistant, but it didn’t do a great job helping me find someone.
I prowled the internet. I called local universities to see if any students might be willing to help out. I put an advertisement on Craigslist (much to my parents’ chagrin) and in a local newspaper. It took time, patience, and discernment to find the right person.
I connected on Craigslist with a veteran who did some home-health work professionally. He met with my parents and me at a third-party location for obvious safety reasons. I recommend everyone else do the same when interviewing a caregiver.
He also had another person interested in taking the shifts he couldn’t, and the two have helped me for two hours in the morning and night for the past two months. They are capable of carrying me, helping me move around the house, and stretching me. When they’re around, I feel like I’m in control of my body. My mind is intact; I just have helpers get the physical things done.
I went through a similar process to find a roommate. I’m not at a point yet where I need 24/7 care, but my parents and I wanted to find someone who was around, shared my Christian worldview, and could help out every now and then when my caregivers were away.
After months of looking and interviewing a handful of candidates, we settled on the one. Facebook Marketplace yielded the best results, but I also had to sift through a lot of requests that didn’t pan out.
My new roommate has been able to help me with miscellaneous tasks, such as installing a new part on my gaming computer or opening Amazon boxes. Occasionally, if I have to use the bathroom at night, he can help me off the toilet.
I’ve had to think a lot more about what goes into being a real adult these past couple of weeks as I transition to living alone. I have to water plants, clean the apartment, and meal prep with the help of my assistants. I also have to schedule out everything in life now that I am reliant on others’ time for assistance. It’s challenging, but it keeps me on my toes.
With a bit of creative problem-solving, time, and energy, I’ve been able to go back to living alone, even though my disability has worsened since I lived in D.C. three years ago. Going out on one’s own seems like a normal part of life, but given everything I face, I feel accomplished that I’ve gotten this far.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
Hawk, You always impress me with your uncommon common sense and good will. Tomorrow, as you may know, I'm giving the eulogy for my best friend of more than 50 years. It's too bad that we (me) don't realize how important relationships are until they end. Those days of hanging out with you are some of the best memories I have. Keep on keeping on. Love, Uncle Mike
I really enjoyed reading this article! Many other young men with DMD want to live independently, but do not know how/where to start. It's my hope that this article will inspire others, give them the confidence that they need, and show that independent living is possible, despite their current level of mobility. I am very proud of you!
I really enjoyed reading your story, I admire your strength and determination. I live in Sweden, our son has muscular dystrophy he gets 24/7 personal assistance from the state, I wish US also would be like that.
Please take good care of yourselves and good luck in all what you do.