Columns

Combining medical appointments with school, work, and finances can sometimes overwhelm me. My mom used to be the keeper of my schedule, but now it’s all up to me, and the pressure is on. The best way for me to reduce stress when everything seems to happen at…

I promised you that Sammy would be back. He came to this column on April 18 (see: “True Accessibility for All: No Roadblocks, Please“), and because he is my alter ego, I figured we’d be talking again at some point. The last time Sammy caught up with me, I…

Having Duchenne muscular dystrophy is hard because of its progressive nature. I can no longer participate in activities the way I have in the past. As the disease advances, it is important for me to select friends carefully. Not everyone sees past the wheelchair and my weakness…

Many people love to travel. The issue of wheelchair accessibility on airplanes is important. Just as important for those of us who don’t use a wheelchair but are looking for better ways to get around is how we augment the strength we have with assistive technology.

Prior to my diagnosis, my family spent much more time traveling than we do now. Even though I’ve never traveled outside California, I still have memories of long, scenic car rides across the state to our vacation destination. I miss those winter days spent in a snow-covered cabin in the…

In a past column, I wrote about focusing on the things I can do rather than those I can’t. One of the things I can do is travel, and I’m fortunate to have visited many places around the world. Traveling is possible even with…

Research and clinical trials Science is closer than ever before to finding treatments and cures for many rare illnesses. An important topic that I’d like to address is the process of research and clinical trials. This is an area in which we can all help…

As women, we reach a point growing up when we must enter the intimates section of the department store to begin shopping for bras. Finding a comfortable bra is an exercise of trial and error for every woman, and especially for those of us living with a chronic illness or…

I’m not going to be an athlete — and that’s OK. I’ve found a competitive outlet through video games. While sports helps to build friendships and engage in teamwork (I had felt excluded from that opportunity for comradery), video games have leveled the playing field for me.

One of the greatest human needs is to feel that we belong. Most of us, even the introverted ones among us, seek to have a group of people with whom we feel a connection. Family is usually the first community that gives us this sense of belonging, a group in…