Learning Patience, Communication Was Crucial as SMA Progressed

I once knocked over our Christmas tree when I was 3 years old. To this day, I’m not proud of it, and frankly, I’m still a little traumatized by it.

I was simply trying to get a good view out the bay window to see our neighbor’s Christmas lights while in my wheelchair. Let’s just say my spatial skills weren’t quite developed yet. Unfortunately, the tree took the brunt of my lack of awareness. I, on the other hand, thought I’d ruined Christmas.

Ever since then, I’ve been hyperaware around Christmas trees while in my wheelchair, especially because one of my favorite activities is decorating them. As a little girl, I’d drive up to the tree and reach my arm out to hang an ornament. My mom always prohibited my older brother from putting ornaments at my level so that I could participate in the family tradition as much as possible.

However, the name of the game with SMA is disease progression. Our bodies tire. Muscles weaken. And we’re faced with the loss of abilities we once cherished.

By high school, I’d lost the majority of my arm function. With this new way of living in mind, I had to learn how to verbally communicate everything I wanted to do with my arms. This meant I could no longer do DIY projects alone — I’ve always loved crafts — nor could I write or draw by hand. And I couldn’t hang ornaments on our Christmas trees anymore.

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This humbling experience taught me how to have patience — for myself and the person helping me. It’s so easy and efficient to want to do things for ourselves rather than take the time to explain to others how they need to be done.

I didn’t have a clue about how dependent I’d actually become as an adult with more needs and responsibilities. I didn’t realize that someday I’d have to ask for each bite of food or sip of a drink. I didn’t know that I’d have to take the time to explain exactly how I wanted to paint my own picture frame or make decorations for my friend’s baby shower and so much more.

Recently, I was perusing the internet for inspiration on how to decorate my Christmas tree and figuring out if it was a project I could verbally execute with my caregiver. I had a vision, but putting it into words was a different story. My friends and caregivers always roll their eyes when I proclaim this, because they know I’ll force them into channeling their crafty side to help me, per my instructions, of course. (I swear they still love me.)

In this case, I showed my caregiver a large, brown bag filled with sprigs, leaves, flowers, and ornaments galore. This wasn’t going to be your average Christmas tree. This was going to be an Alyssa Silva Christmas tree.

Together, we filled that tree one by one. My caregiver patiently listened as I suggested where to put each item. And I patiently explained how I wanted it to look. The process was long and sometimes challenging. Trying to explain which white poinsettia on which tree branch required detailed explanation, humor, and patience.

But we worked together and remained patient with each other. She was my body, and I was her brain. Though the task was tedious, it served as a good reminder that while I may be dependent on others, I can still foster some independence with the right people and mindset. Having a beautiful tree is a perk, too. But I’ll let you be the judge of that.

Alyssa’s Christmas tree in her bedroom. (Courtesy of Alyssa Silva)

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.