Living with SMA entails so much more than physical challenges and caregiver shortages. Our lives are much fuller and richer than that. The riches are in our day-to-day experiences, as well as the wisdom and maturity that SMA bestows upon us. This often results in other qualities, such as…
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!
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My daily schedule is full, so it’s important for me to use my time wisely. This allows me to enjoy fun activities and do the work I love. I face various challenges in balancing my time. Some can’t be changed, but I have found solutions to others. What I…
Last month, I wrote about a whiteboard of collected memories I received as a gift when I graduated from college in 2005. It had 38 pictures on it that showcased the many life adventures I’d had up to that point. I noted that the whiteboard recently fell off the wall…
When my great-aunt was 100, she used to sing a song that said “count your many blessings.” As I approach another birthday and complete another year on my journey with SMA, I’m counting my blessings one by one. I’ve had plenty of crises — or as I call them,…
When I graduated from college in 2005, I received a special gift: a large whiteboard to hang on the wall. It had 38 pictures on it showing many of my adventures with SMA and other key moments I’d had over the years. Those pictures have remained on my wall…
With SMA, I work hard to take advantage of every opportunity that comes my way. But what if I’m missing something? What if there are opportunities that are within my grasp, but I’m not aware of them? That’s why I’ve been doing some inner exploration. It can teach both…
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 been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while I was in bed, as usual. My mom also happened to be in…
At the beginning of the year, I felt a sense of calm because I finally had enough nurses to complete my home nursing staff. There was no pressure to find a replacement for a nurse leaving my case. That kind of calm is priceless in my life with SMA.
One of my rules is that nurses cannot care for me when they’re sick. Although this creates challenges, I don’t want to risk exposure. Because I live with SMA, the repercussions of a virus or other cause of illness on my health would be severe. Another thing that creates…
If you’ve read at least a few of my columns, you know that I hold on tightly to hope. It’s what keeps me plowing through the rough terrain of problems and crises, as my faith tells me that, one day, many of these difficulties will be solved. Now, it seems…
It’s been almost a year since I moved into my new house, and I’m still working to get everything the way I want and need it. I’ve always loved warm temperatures. As long as I stay hydrated, the warmth has a special way of soothing my soul. This is…
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