Hey, how are ya?
I hope you all are doing well and handling the weather changes gracefully. I love living in New England, but I have come to hate winter and cold weather. Without a doubt, it will be cold for the next five months. Even though snow days are still the best, navigating my scooter through snow is a b@#%$. However, I have learned to adapt to rough weather because I had to. If I didn’t adapt, I would stop living, and as you already know, I ain’t about that life. Growing up, and as my disease progressed, I learned to get comfortable with things constantly changing. Adapting has become a constant in my life. It has become my new normal. So, I thought it made sense to share with you some ways I have adapted to challenges beyond the blinding blizzards of Boston.
Socializing: I wish I could just walk into a bar and dance like a fool, or get a round of drinks for my buddies. But I can’t. I still make an effort on the dance floor by flailing my arms. That’s why people compare my dancing skills to John Travolta if he was in a wheelchair. Well, nobody says this, but they should. Socializing in a scooter is fun if you let it be. My best friends do a great job keeping things fun too. They are some of the most amazing people in the world. Without them, I wouldn’t be able to go to bars, restaurants, sporting events, etc. When we are out, nothing physically gets in our way. Stairs? I hop on their backs and take a piggy-back ride. Crowded bar? My friends work as a team to create a path for me to roll right through–like a motorized Moses parting the Red Sea. We adapt and figure it out on the fly.
Driving: I’m not the best driver. Truthfully, it probably has nothing to do with my physical limitations. One of the hardest challenges for me was adapting to a different driving standard. This ultimately allowed me to drive on my own. Here’s how it works…because I can’t really feel my feet, I have a car with specialized hand controls. My right-hand goes on the steering wheel, equipped with what is known as a suicide knob. This round knob, where my right-hand lives while driving, makes it easier for me to turn the steering wheel with one hand. My left hand is glued to a lever underneath my steering wheel. This lever allows me to control the gas and breaks. When I push the lever away from me, the car brakes. When I pull the lever towards me, it accelerates. Adapting in this way has enabled me to drive on my own, and maintain a level of independence that makes my life much richer.
Exercising: I could not remain independent – transferring myself to my car or anywhere else – if I did not work my upper body. I exercise almost daily and have been doing so for years. FA slowly destroys the muscles in the body. The most beneficial treatment I’ve found is to workout often. So, I try to use and build the muscles I still have because doctors tell us that if you don’t use your muscles, then you’ll lose them. I split my time exercising between CrossFit and Pilates, both of which I’ve had to adapt to fit my needs. I have also made a conscious decision to focus on these two different exercises as a combo that works for my personal goals. For instance, at CrossFit EXP, I’ve been working on strength since I was eighteen with my trainer, Nick Normandin, who is like family now. At Pilates, I concentrate on working and developing core strength with my amazing instructor, Jenn St. Laurent. Since I sit most of the day causing my muscles to slowly atrophy, Pilates helps me strengthen the muscles I do not regularly use. Pilates has also forced me to be mindful of my posture. I am grateful to have awesome people like Nick and Jenn in my life. They show me that I can do so much more than I ever knew.
Adapting is scary. Change is scary. But change is constant, and often necessary. Being open to change means that you are willing to take risks. Doing something for the first time or switching up your daily routine can be frightening. However, adapting gracefully and taking risks are just ways you mature.
“He who is not courageous enough to take risks will accomplish nothing in life”
– Muhammad Ali