Every morning, after relieving the night nurse, my mom walks toward my bed. “Snookums!” she lovingly calls out when she sees that my eyes are open. It’s a nickname that comes straight from her heart. Everything my mom does for me, which is a lot, comes from that same place.
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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Thanksgiving and Christmas are holidays that make me grateful. I am thankful for the birth of my Lord and Savior, Jesus, and how he not only brought me through all the events of this year in one piece, but also made me triumphant in many areas. One of my favorite…
It’s incredible how seemingly small changes can lead to something that turns out to be much bigger. Let’s explore this idea through my experience with SMA. In February, I moved into a new house, where we converted the garage into my bedroom, bathroom, kitchen, and medical supply room.
In my previous column, I discussed how nurses are recruited and hired by a home health agency, as well as the interview and training processes necessary to work on my case. In this column, I’d like to explore what it takes for a nurse to remain in this role,…
Of the 43 years that I’ve been on my SMA journey, home health nurses have accompanied me for 39 years. I know a lot about home healthcare, particularly how registered nurses and licensed practical nurses work in one’s home. Unfortunately, not everyone is familiar with home health nursing and…
Everyone experiences times when they feel overwhelmed by problems to fix, regardless of whether they have SMA, as I do. My life right now is a work in progress, and there’s nothing wrong with that. I’m currently addressing two main issues: frequent illness and a lack of nursing coverage.
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…
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.
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