I had a conversation with someone recently about the positive things we were grateful for in the past year. Perhaps it is a typical topic of discussion this season. However, this year hasn’t felt like a normal year for me, and I know many others feel the same.
When I reflect on the past year, although I recognize I’ve been incredibly privileged and a whole lot luckier than many to have a relatively stable health and work situation, it has indeed been odd and tough for me, both mentally and physically.
There were many things I wanted to experience and accomplish this year. And a lot of them just fell by the wayside. Take, for example, this past Thanksgiving.
I wanted to hug my grandmothers. I wanted to help cook the Thanksgiving turkey with my brother. And I had this odd and sudden desire to make pancakes with my mother for my niece and nephew. But I couldn’t, in good conscience, do that this year.
Such has been 2020.
But perhaps that’s why talking about the things I was grateful for felt important and profound. It wasn’t a casual or trivial topic of conversation. Finding things to treasure and be grateful for is, after all, even more important when life is difficult and crazy.
So, here’s a bit of a toast, a tribute, to the things that have helped me get through the year, particularly as someone still trying to figure out what it means to be a person with Charcot-Marie-Tooth disease (CMT).
Firstly, I want to recognize and offer a toast to the sanctuary I’ve found both in the pages of books and in the sounds of a “Spacedeck,” which I use to meditate while cross-legged on my bed. These things have helped guide me toward a more positive inner quietness amid a deluge of troubling news, emotional stresses, and physical pains.
Although I haven’t read anything particularly amazing this year, and I struggled to maintain a consistent habit of meditation, these rituals have been such a welcome treat.
I also want to offer a toast to the friends with whom I’ve shared many hearty chuckles via video chat and on the phone. Oftentimes, after closing up my laptop or hanging up the phone, I’d find my cheeks aching from smiling for so long — a pleasant pain.
I’m also thankful for the online networks, events, and hangouts, where I’ve found a welcoming community, both CMT-related and otherwise. Considering I just started networking with other CMTers in 2019, I was so disappointed when I realized that precautions against COVID-19 would mean I wouldn’t be able to attend CMT-related events this year.
But while online events are undoubtedly a poor substitute for real, in-person interaction, networking online is a powerful tool and has its own merits.
It’s not uncommon for those of us with disabilities to be at risk for social isolation, regardless of whether there is a pandemic or not. So, online CMT communities and friends determined to never let you feel forgotten are much appreciated.
Finally, I’d like to thank my chair, my weights, my resistance bands, my stairs, and my neighborhood for being my makeshift gym — providing me with the means to try my best to stay active when interacting with others and going to real gyms require a lot of precaution.
It’s important for those of us with CMT to stay active and take advantage of what mobility we have. But this year has made that pretty difficult, so I’m thankful that I’ve at least had some tools to help me.
Hope for the new year
Many of the struggles that have characterized 2020 won’t go away when we all turn our calendars to January 2021, but I’ll still be happy to wave this year goodbye. However, I hope I will not forget the lessons I’ve learned from this year and the good habits I’ve formed while trying to cope with some of the difficulties of the past few months.
Note: Charcot-Marie-Tooth News 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 Charcot-Marie-Tooth News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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