The Best Unorthodox Advice From My Doctor
When you’re living with a complicated disease such as SMA, it’s half the battle to have a knowledgeable and trustworthy medical team helping to manage everything. I’ve always been fortunate in that respect. I know how difficult it is to build a solid medical team, but I’ve somehow collected some of the best over the years.
While I don’t play favorites with who I feel is the most qualified, I have one doctor in particular who is brilliant beyond belief. That’s lucky, because there’s no question I deal with many health issues. Gastrointestinal problems, vertigo, abnormal fatigue, respiratory issues — you name it. At times, it gets heavy. I wish I could shut off my problems like a light switch. So I’m grateful for my medical care and their expertise.
But what I love most about this doctor is his ability to see a human being beyond the patient. He recognizes me. He empathizes with me.
I see him at least once every four months for my Spinraza (nusinersen) injection. And when I do, he always sits down at my bedside in pre-op to see how I’m doing. After going over my long list of health concerns, he gently assesses everything, makes his scholarly suggestions, then follows it up with, “And when was the last time you saw the ocean?”
Living in southern New England, I’m lucky to have the ocean not too far from home. Some of my fondest childhood memories are from days spent in beach houses, with family campfires in the salty air and boats sailing by in a little fisherman’s town. Now, as an adult, I still feel that deeply rooted joy whenever I see the ocean.
After all, I’m a solar-powered soul. I thrive best in the sunshine. My mood instantly shifts when I smell the ocean and feel its breeze graze my skin. In fact, after a day at the beach, my oxygen level always runs higher. I’ve questioned doctors about this finding and researched why it happens, to no avail. It’s one of life’s mysteries I don’t think I’ll ever explain. Truthfully, I’ve chosen not to try to make sense of it anymore. It’s simply a pact between the ocean and me now.
My doctor and I have a strong affinity for the beach. So there’s an unspoken understanding he and I share when he “prescribes” a beach day to me. It isn’t about getting a tan or swimming in the ocean or even having a tropical cocktail that’s split with my mom. It isn’t about ignoring my problems and running away to the ocean.
It’s about nurturing my mind, restoring my soul, and giving myself a break from all the medical baggage to allow myself to just be. It sounds so simple, yet it’s something I’m notoriously known for forgetting. My mental well-being deserves just as much attention as my physical well-being. But somehow I get so wrapped up in my medical care that I forget to be more than just a patient with SMA. I forget that I’m human, too.
Thankfully, the beach, and my doctor, are always there to remind me.
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.
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