During tough and stressful times, it’s important to remember to hold each other close. This time, though, let’s take that figuratively and not literally.
A recent conversation with a Charcot-Marie-Tooth community icon, Bernadette Scarduzio, reminded me of this lesson.
It may seem obvious, but sometimes I find it’s an easy lesson to forget. While I understand the importance of social distancing and isolation during the COVID-19 crisis, when left alone, I tend to fester, and my mind can turn to depressing thoughts.
I found it a pleasant and much-needed surprise when Scarduzio, social media coordinator at the Hereditary Neuropathy Foundation and star of the CMT documentary “Bernadette,” contacted me to check in and impart some advice while we’re all quarantining ourselves.
While this state of isolation and fear due to COVID-19 is a new experience for me, Scarduzio said she’s endured something similar, a feeling of isolation and powerlessness while recovering from hip surgery as a teenager.
“I couldn’t leave the house, I couldn’t be in cars,” Scarduzio said. “And I had to basically stay in my room for six weeks in a certain position. I was 16 at that time. And with this news [of COVID-19], all of those memories came back.”
Indeed, as COVID-19 began to strip away many of Scarduzio’s spring plans, she said she almost felt a resurgence of lingering post-traumatic stress disorder from some of her darker teenage years. However, she said those experiences made her wiser and stronger.
Following are a few lessons I think I’ll try to remember as we all get through this ordeal together:
Don’t lose contact with family and friends
Scarduzio said that when she was confined to her room, one good thing that came of it was the time she spent with her family, especially her father.
“I have so many memories of my dad and the time I got to spend with him, and I’m so grateful for those moments,” Scarduzio said.
For many families, quality time is rare, because under normal circumstances, school and work get in the way. Scarduzio hopes that many folks practicing self-isolation will take advantage of free time and the technology at our disposal.
“I have a group of friends, and we would generally meet up every month,” Scarduzio said. “And now it’s a lot of FaceTiming.”
Not only are individual members of the CMT community talking online, but also CMT organizations such as the Charcot-Marie-Tooth Association and the Hereditary Neuropathy Foundation are doubling down on utilizing webinars and social media to reach out to members of the community.
For those at the foundation, reaching out to the CMT community was important to “hear them and make sure members of our community are safe and ensuring they have tools,” Scarduzio said.
Find something to keep you grounded, optimistic, and looking to the future
One thing that kept Scarduzio going during times of stress was finding some level of consistency in life and things she could control. A great source of comfort has been her work, meditation, and her pets.
Similarly, although I’m still trying to find an at-home workout routine, I’ve found joy in cooking.
Seek happiness and find things to be grateful for
We talked about the many things we are thankful for. We noted the sacrifice and hard work of essential workers. And we spoke fondly of our friends and family who have reached out.
It reminded me of something Jonah Berger, the youth programs manager at the Charcot-Marie-Tooth Association, said recently during a Facebook event: “I’ve learned from a lifetime of dealing with a physical disability that if I focus on the negative, it feels negative,” Berger said. “I don’t minimize the suffering that’s going on out there, and I don’t minimize how serious [COVID-19 fear] is to deal with, … but what I am saying is that it is more important now than ever to be intentional about staying positive.”
I agree. And I hope that when we get through this, we’ll remember these lessons.
Scarduzio is confident we will.
“America will come back, and I know we, all over the world, will fight this,” Scarduzio said. “And when we get through this, we’ll be stronger, we’ll be better people, and we’ll be more aware of what we have, of the things we take for granted.”
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 Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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