The final countdown is on, my friends. It won’t be long before Discovery Channel airs an hour-long special about the girl in the wheelchair who emerges into her dark, isolated den to prepare for a long winter’s nap. Wait, no. That’s a special on bears.
But if Discovery Channel is looking to cover a different species, sign me up because I’m truly the next best hibernation story. I’m not trying to brag or anything. However, I’m an expert at learning to live in isolation and secluding myself from social obligations with my pack.
As any mama or papa bear living with SMA knows, the winter months can be a risky season, as the exposure to illness is so prevalent. For years, I didn’t exclude myself from the world, but there was a period in high school where I stayed home during the height of cold and flu season — typically between January and late March. I had become incredibly sick with walking pneumonia for the first time in 10 years, so both my parents and I agreed it would be best to homeschool me for a while. However, I didn’t have this same luxury in college, so I took the risk and ended my three-year stint with hibernation. Throughout my college career, I only got sick once, at the tail end of my freshman year.
In the few years following college, I continued to go about my routine during the winter months with caution. Friends and family knew to keep their distance if they had colds. Social activities were limited within reason. Hands were washed more frequently. Everything was going according to plan until two years ago when I made a decision that I knew would be the most beneficial to my health: I re-entered my hibernation phase.
At the beginning of December 2016, I had received a phone call from my neurologist stating that I was a candidate for the Nusinersen Expanded Access Program, just weeks before this treatment was commercialized. With this life-changing opportunity in the palms of my hands, I decided to focus on my health and do whatever it took to be the healthiest version of myself to truly reap the benefits of this therapy. So, I stayed home — and I mean really stayed home. Days came and went in which I didn’t leave my house. Solitude became my new best friend, and in spite of my loneliness, I managed to stay healthy. At the end of the day, this was all that mattered to me.
The next year, I decided to test my limits and go out the week after Christmas. I vowed to be careful, but there’s only so much I could claim to be in my control. On New Year’s Eve, I started feeling under the weather and landed in the hospital just days into 2018 with respiratory syncytial virus. The Universe gave me the sign of all signs, so I decided that testing my limits wasn’t in my best interest. I hunkered down and spent the next three months focused on healing and working from home.
When I think about the physical (and emotional) state I was in about a year ago, I realize a silly shopping trip to Target during the peak cold and flu season isn’t worth it. That’s all it took last year, a simple store sale the week of Christmas, and I was down for the count. With that in mind, I realize how important it is to be mindful of my whereabouts during this time of year.
To take full advantage of these last few weeks of “freedom,” I’ve been keeping my days busy and chaotic because I know in a few months I’ll be itching for these times again. The hibernation process isn’t easy, and one could argue that at times it may be unnecessary.
However, hibernating doesn’t mean it’s the end-all of my freedom. I still escape to coffee shops when there’s a lull or drive down to the beach on those Indian summer days. The four walls in my home don’t confine me, but I do spend the majority of winter cuddled on the couch either working or hanging out with (healthy) friends. Yes, it can feel isolating. Yes, it can be frustrating. But every day I can go to sleep feeling healthy is a day well spent in my book.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.