Last Wednesday, July 24, was the four-year anniversary of the day I got my first and only tattoo. One month earlier, I had turned 18 and graduated from high school. I was ready for a tattoo. (Courtesy of Leah Leilani) I wasn’t concerned about the needle, as…
I have a lot going on in my life right now, and I don’t get enough time to rest. I’m transitioning to independent living, keeping track of my income while balancing my medical expenses, and completing an internship at The Washington Post while…
Writing a weekly column has been enjoyable. It has been great to examine a variety of issues that are important to the muscular dystrophy community. It also provides a way for people to share ideas. I’ve done a dozen columns so far, and this is my lucky 13. This…
Last year, I wrote about the unfortunate side effects of the medication Lyrica (pregabalin), which I’ve been taking for my fibromyalgia pain. For a while now, I’ve considered the option of switching out my medication for medical marijuana. I’m familiar with the use of cannabis for therapeutic…
I didn’t know many kids with Duchenne muscular dystrophy growing up. Everyone around me was physically able; I was the only one who couldn’t keep up. Now, as I’ve gotten older, I understand the importance of finding friends who have the same disease. When I meet someone…
In the disability community, which is as diverse and broad as any other, there is a debate over terminology. I have seen this play out on my Twitter account and in other places. I have also seen some very strong feelings on all sides. The muscular dystrophy community…
I discovered something different about Washington, D.C. when I moved there for the summer: wheelchair-accessible Ubers are everywhere. Los Angeles, where I come from, has a dearth of accessible Ubers. Having the ability to take an Uber with my power chair opens up a…
I recently attended The Speak Foundation’s 11th Annual Conference. This event is for individuals with neuromuscular diseases and their families. We met in the beautiful city of Atlanta, for what turned out to be an exciting few days. This was also a fitting prelude to the upcoming National…
Duchenne muscular dystrophy is not easy for people to wrap their heads around. Most haven’t heard of the disease, which is rare and affects about 1.02 males ages 5 to 24 per 10,000 in the United States. When people see me walking, they might…
It’s hard to find time to spend outside, especially since I have a disease that hampers my mobility, but being outdoors reinvigorates and reboots me, and reconnects me to nature and God. During weekends I could lie under the covers well into the afternoon and watch…
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