I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
2020 has been a wild year. Thanks to the pandemic, growing civil unrest, and a tumultuous and pivotal presidential election, we are all leading a life we didn’t anticipate or plan for. Add in a progressively degenerative disease like Friedreich’s ataxia (FA), which doesn’t pause to consider any external battles a person might be facing, and the ride becomes even wilder.
However, this is the time of year when we traditionally pause to consider what we are thankful for. While I am surprised by my list, I appreciate the opportunity to take stock of everything that has had a positive impact on my life.
Life with FA has made me more thankful than ever for doctors. I am thankful for the ways my life is measurably better because of their selfless dedication to studying, learning, and practicing medicine, all in the name of helping others.
I am thankful for organizations like the Friedreich’s Ataxia Research Alliance and Friedreich’s Ataxia News, which exist to give FA patients a better life. I am thankful for the community these organizations foster. I am thankful for the ways these communities promote awareness and support fundraising so that we can continue to help the scientific minds that are working to treat and cure FA.
I never thought I would be thankful for mobility aids and assistive devices, but here I am at 33, realizing I wouldn’t be able to get out of bed without help. I am thankful for the independence these clever devices give me. Yes, I resent my dependence on them, but without them, I wouldn’t get to lead the life I do.
I am thankful for my village. I am thankful for the army of friends and family that is with me through the thick and thin on this FA journey. I am thankful that they know when to step in and help me and when to stand back and let me try. I am thankful for the moments my village cheers me on, offers sage advice, shows compassion, and simply offers a shoulder to cry on.
I am thankful for the good that social media has brought into my life, despite each platform’s flaws. I get to talk with and keep tabs on fellow FA patients from around the world. This helps me feel connected and realize I am not alone on this journey.
I am thankful for the good days when my FA doesn’t seem to interfere too much or make me feel too blue. I am thankful I can recognize and appreciate the good days, because I know how bad the bad ones can be. I am thankful I can grasp the progressive nature of my symptoms because it forces me to assess and truly appreciate the “right now.”
I am thankful for the busyness that surrounds this time of year. I am thankful for the many happy reasons to get out of bed, such as volunteering at my kids’ school celebrations, grocery shopping for new recipes, decorating the house, shopping for Christmas presents, and catching up with loved ones. I am thankful for excuses to keep putting “mind over matter” and moving forward. I am thankful to have so many beautiful reasons to celebrate.
I am thankful for extra time with loved ones. I get unhurried mornings with my kids and excuses to stay up a little later. I get visits with my grandparents, aunts, uncles, and cousins. I get to hear stories, new and old, about my loved ones.
Most of all, I am thankful for hope. I am thankful that everything I’ve mentioned is creating a brighter, FA-free future for me and the rest of the community. I take such comfort in the knowledge that other people are just as desperate to cure FA as I am. But until that day comes, I will still be able to lead a happy and productive life full of things to be thankful for, including doctors, assistive devices, community, my village, good days, and busy days.
I am reminded of my favorite Christmas hymn, “O Holy Night,” and the hope of the Christmas season:
“O holy night, the stars are brightly shining/ It is the night of our dear Savior’s birth./ Long lay the world, in sin and error pining/ ‘Til He appeared and the soul felt its worth./ A thrill of hope, the weary world rejoices./ For yonder breaks, a new and glorious morn.”
Despite FA, despite the chaos of 2020, I am filled with thanks and hope this holiday season. I sincerely wish the same for you and your village.
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