I’ve written plenty about how hard I work to keep healthy and prevent emergencies. I work just as hard to figure out new ways to have fun, immersive experiences that can accommodate my physical challenges. Last year for SMA Awareness Month, I wrote that my dream was to travel across…
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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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…
Anyone can experience ironic twists and turns in life, and those of us with SMA are no exception. In my previous column, I wrote about how my mom and one of my day nurses heroically saved my life during a medical crisis. Coincidentally, the nurse who helped save…
No matter what SMA throws at me, people invest so much into my care that hardly anything keeps me down for long. I invest a lot into my care as well. Two years ago, I wrote a column about how hard I work with my Vest Airway Clearance…
SMA has certainly given me the privilege of seeing cool gadgets and cutting-edge technology evolve over time. For instance, I’ve had five different wheelchairs since 1987, when I was 5 years old. The technology of them has changed so much over the years that I’ve felt like a passenger…
In addition to moving into my new home in February, I’ve been experiencing several other major changes. I’ve been bracing myself for them since they arrive in waves. Thankfully, several anchors in my life add stability and prevent me and the wheels of my chair from being swept away. First…
Now that I’ve been living in my new house for a month, I better understand what I love about it. In my last house, where we’d lived since I was 13, I had my own home within the home, which included my bedroom, bathroom, kitchen, and medical supply room.
Memories are like windows that look inward. Living with spinal muscular atrophy (SMA) certainly adds a special framework to that window, allowing light to pour in on all the unique experiences I wouldn’t have otherwise had. I consider that a blessing. SMA has taught me to treasure my…
The weather can affect those of us with SMA in ways that many people wouldn’t think of. For example, I wish I could just enjoy looking out of the window as the snow falls, with everything I need to wait out a winter storm. But in my reality, ice,…
As I reflect on 2024, I see that some great things have happened for me. I’m trying to figure out how to multiply those great things so they happen more often. This is one way I can gain an advantage while living with…
Many things help me live with SMA, but light plays a special role in my life. There is actual physical light, such as from the sun, and then there’s the light of hope. I’ve written a lot about the latter, and it’s so special that there’s more for me…
Since July, my family has been converting the garage space in our new house into my own bedroom, bathroom, kitchen, and medical supply room. We’ve faced one challenge after another as we prepare to move. Currently, I have a great setup that accommodates my SMA needs. I have all…
I bravely soar to meet the challenges of SMA with determination and a can-do attitude. But despite my positivity, certain things get me down sometimes. I feel discouraged whenever I think about how only the few people closest to me know who I truly am on the inside. I…
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