So much of who we are is influenced by our family members. I’m not saying that we have to be exactly like them, and we certainly should do whatever we can to not copy bad behavior. Yet the honorable qualities we see in those close to us have a way…
Soaring With Hope — Ari Anderson
Ari Anderson resides in Charlotte, North Carolina, and was diagnosed with SMA type I at 6 months old in 1982. At the time, the prognosis was almost hopeless. Today’s medical therapies have changed the prognosis to hopeful. Yet, the rest of society has a long way to catch up in how they see people with SMA. Through his column, “Soaring With Hope,” Ari shares how he changes views through advocacy, innovative technology, and determination. He inspires hope by helping others rise above their hardships. No matter who you are, through his conversational style of writing, you may find that you have experienced the same feelings and emotions throughout your life as Ari has!
Featured Post
Because I live with SMA, I value comfort and routine, which help to alleviate some of the hardship and stress that come with managing this disease. Since January, a new day nurse has been doing her best to provide these things for me. Her excellent care helps to protect…
I’ve written about how I’ve looked for my own nurses to provide my SMA care, but I don’t think I’ve been clear that I’m only assisting my home healthcare agency in its search. Over the past 37 years, I’ve used a few home health agencies and spoken with…
So much of life is about gaining maturity through our experiences. Sometimes we go through events similar to ones we’ve experienced before, but we now understand them from a whole different perspective. A few months ago, I shared here that my back was to the wall. I need night care…
In my previous column, I explained how two years ago I was rescued by a heroic person in my life. Just as my main night nurse of eight years was moving away, a new day nurse of mine agreed to switch to nights. As relieved as I was to…
When my back is to the wall and a crisis is coming to a head, that’s when my life really gets interesting. There are no more long waits to see if something will happen; instead, something has to happen. The way I see it, human intervention usually occurs, but that…
Looking back, I see how I’ve always had an inclination to write a lot. Even in high school 25 years ago, when a test question required me to write a paragraph or two, I would write pages. This was back when I had to use a scribe to write or…
It seems that I have a problem with knowing when to speak up right away and when to wait a brief moment before I say something. In a recent column, I explained how I have feelings of remorse when I say or do something I think was taken the…
If you regularly read what I write, you’ll know that whether you have a rare disease or not, I have similar emotions and thoughts as everyone else. Yet, the medical symptoms I experience from SMA must seem completely foreign to anyone who doesn’t live through it…
I’m just a normal guy who happens to have physical limitations because of SMA. At least, that’s how I want others to see me. But is that how I see myself? I ask because I can be extremely hard on myself, sometimes even getting on my own nerves. Some…
I know I talk a big game when it comes to advocacy and setting goals for myself. The great results I achieve may lead some people to think that my efforts are effortless, but of course they never are. Surprisingly, though, some things in my life with SMA…
Rarely have I not received the best treatment available for my SMA. Doctors and nurses have been proactive in giving me aggressive care to prevent me from getting sick. But when I do, my medical team, including my mom, is aggressive enough in its care to prevent me…
As it is still early in 2023, this is a good time for me to evaluate what things I’m doing right and what things I can improve upon. And to ask myself what specific actions I can take to make more of a difference. I emphasize “actions,” because although…
Explore More Columns
Discussion
Discussion
Discussion