It can be annoying when you receive devastating news, and someone naively says, “When one door closes, another one opens!” As someone who has received plenty of bad news, there is some truth to this statement, no matter how cliché it sounds. In the ’90s, I received the devastating news…
To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you have a rare disease. I’m rare because I have a huge wheelchair and tracheostomy, but that doesn’t mean I’m…
Wouldn’t it be wonderful if we could easily put into practice the lessons we learned growing up? We were taught to think about the effects of our decisions, but sometimes it is difficult to know how our actions may affect the lives of other people. For those of us with…
To make my sometimes hazardous life with SMA less scary and more exciting, I tend to think of myself as a pioneer. As my previous column noted, I carry a lot of “baggage,” or experiences, during my travels. In 1803, as PBS noted, U.S. President Thomas Jefferson commissioned…
Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine. What if I told you that we would be permanently stuck on ground level, going nowhere in life, without all the heavy…
