Guest blog by Hawken Miller
Many of the things I don’t think are possible for me to do really are. Once I get over my initial apprehension and thoughts about what I won’t be able to do and I open my mind I find that anything I set my mind to is possible.
This idea defined the road trip I went on with my friends in June. There were a lot of fears I had especially living with Duchenne Muscular Dystrophy about what I would and would not be able to do but once I decided that I was going on this road trip those fears subsided. There’s a lot more to think about — what national parks are accessible, my diet, my equipment — which makes it even more difficult to plan for a road trip. This road trip was the first time I would be travelling without my family to remind me to take my pills and stretch every night. I survived my first year of college without them so even despite this being the first time travelling without my family, I felt more prepared to teach my friends how to stretch me and get over my apprehension of asking for help.
We loaded up my 2013 blue Ford Escape with my scooter and all our bags (somehow we were still able to fit three people) and we drove off for the first leg of our trip which would eventually lead us to Montrose, Colorado, our final destination. In between we stopped in Vegas for a Jennifer Lopez concert and helicopter tour of the Grand Canyon and stopped in Utah for Zion National Park. On the way back we took a train ride from Silverton to Durango, Colorado, hit the Four Corners Monument and stayed the night in Flagstaff, Arizona. There was a lot of driving and action in those seven days on the road, and surprisingly, at no point was I afraid of what I wouldn’t be able to do.
Before the road trip even started I had a fall and hurt my knee. Thankfully it wasn’t anything serious, but even though I was impaired more than I normal am I was still able to enjoy my time with my friends and appreciate the natural wonder of the United States. Part of the reason why I was so successful was because I was with two friends who really cared about my health and understood my physical limitations.
The most important part which allowed me to feel like I could go on the trip and still be involved in all of these activities was communication between the three of us. And as anyone who has been afflicted with this disease knows, communication is everything and being able to open up with my friends and tell them what I can and cannot do and have them help me when I cannot has been the hardest yet most rewarding obstacle that I have had to overcome. The next most important thing for me was to remember to maintain my health by remembering to take most of my pills, doing my stretches every night and knowing my limitations.
One afternoon in our two-night stay in Montrose, after we had driven for a while, I was exhausted but wanted to make the most of our time there and see all of the sights. At that point, with some help from my mom over the phone, I came to the realization that doing more that day might have been a detriment to my health. So I let my friends know I would be sticking around my room and then proceeded to nap for two hours. I gave my muscles time to rest and I can definitely tell it made a difference in the way I felt that night and for the rest of the trip. As someone who can sometimes be very belligerent to getting more rest and someone who tries to keep up with his friends physically, it was hard to accept, but extremely important to realize that I needed more rest.
For all those others diagnosed with Duchenne, no matter what the degree, I hope I can help give you the motivation to go on a trip with your friends this summer because you will be surprised with what you can do if you have the friends and family to support you and aren’t afraid to ask for help when you need it.
Hawken, 19, will be a sophomore at the University of Southern California. He is an editor at the Daily Trojan.