It’s important to reflect on the past, and photos help me do that

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 and broke. It was repaired a few weeks later. Throughout the years, it usually hung on a wall that was out of my line of sight most of the time.

After it was repaired, we hung it on a different wall. Now, whenever I’m in my room, the pictures are in my field of vision.

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How photos connect me with the past

Now that I’m facing my board of memories a lot more, it has given the pictures extra meaning. The more I look at this gallery of frozen moments in time, the more it helps me to reconnect with my past and my journey with SMA.

When I sleep at night, I’m turned from side to side every two or three hours. I usually start off on my left side so I can watch TV. My nurses move my bed, which is on wheels, so that it’s in a good position for me to see the TV. This positions me a lot closer to my board of memories than when I’m in my wheelchair during the day, allowing me to inspect the photos in detail.

As I study them, each picture evokes different emotions. One photo reminds me of the feelings of wonder and innocence from my childhood. It was taken during my first trip to Walt Disney World, which was paid for by the Make-A-Wish Foundation, just before my sixth birthday.

I’ve been to Walt Disney World three times over the years. Each time was enjoyable. Yet, remembering that first trip gives my heart some special feelings, because I was so innocent. I was young enough to partially believe that the Disney characters might be real instead of a person in a costume.

Then, because it was so close to my birthday, my parents surprised me by paying for an extra day.

Pictures are great at helping me remember the past. Yet, I can’t interact with them. That’s why something that happened to me last weekend was such a treat.

A special guest

A nurse who had cared for me until I turned 6 years old came for a visit with my mom and me. We hadn’t seen or heard from her for nearly four decades. Back then, the first few years of my life were marked by constant bouts of pneumonia and frequent hospitalizations. (One lasted 13 months!)

This nurse was part of a tight group of medical professionals who were devoted to my care through thick and thin. She told me that she’d been there when I went into respiratory arrest nine times. She and others refused to give up on trying to get me breathing again, even though a couple of times, I’d been in respiratory arrest for quite a while.

Over the years, I’ve heard stories from my mom about the medical professionals who gave their all when I was a baby so that I could survive. I have distant memories of that time. It was nice to finally put a face to one of the nurses who battled death for me so that I could bring hope to others.

It was a privilege for me to be able to thank her for not giving up on me. I enjoy the life I have now because, over 40 years ago, people like her fought for me to live. I go through plenty of trials and tribulations with trying to find nurses to care for me. Yet, I have an extremely privileged life, and I’m very happy.

That special nurse was proud to learn that I’ve been back to the hospital only twice in the past 40 years for being sick.

We also talked about my upcoming plans, which will help me soar into the future. Stay tuned for more!

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.