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.
In my opinion, one of the worst things about living with a disability is feeling like a burden to others. Although I am the one going through the progressive degeneration of my abilities due to Friedreich’s ataxia (FA), it’s the people in my life who have to help carry that burden, both physically and emotionally.
I am the captain of Team Kendall and we participated in our 8th rideATAXIA fundraising event this weekend. It was a huge success, and we raised $158,000 in support of clinical research for FA. I also got to see many friends in the FA community who I hadn’t seen since 2019.
But since it had been so long since I had focused on fundraising and getting my team up to the Dallas area, I realized how out of the routine I was. I had become so caught up in just living my life that I forgot that part of that life is dedicating time and effort toward fundraising with the aim of prolonging my life.
Even amid all of the joy and celebrations of a job well done, I found myself thinking, “I can’t believe that I am having to ask my friends and family to give their hard-earned money to the researchers, scientists, and ambassadors who are championing to find a cure for this horrible disease. I can’t believe that my family and I are having to dedicate an entire weekend to this disease. I can’t believe that this is my life.”
Life with FA is a heavy burden, and I know that I can’t bear it alone. I have to humble myself and ask for help. But I know that everyone has burdens of their own, and it pains me to cast mine on loved ones. I would prefer that my friends and family spend their money on things that make them happy, or save their money for a vacation or early retirement rather than taking part in my burden of trying to put an end to FA. I would rather my husband walk beside me and hold my hand than keep his hand on my walker to help control my momentum and gait.
I am unable to fully express how grateful I am for the support and encouragement I receive. The fact that people choose to invest in my future is astonishingly humbling. I don’t take a single penny, prayer, or well-wish for granted. It allows me to regroup and encourages me to fight another day.
But even with all of this gracious support, I still can’t help but feel like a burden. Feeling like a burden because of the burdens my disease forces on others is a heavy load for me to carry. It is exhausting trying to carry most of it for fear of overtaxing my loved ones or of seeming ungrateful for their help.
While I wrapped up this rideATAXIA weekend, my church pastor started a new series about rest, which he framed with this passage from Matthew 11:28-30: “Then Jesus said, ‘Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.'”
At times, it feels like I am surrounded by the burden of FA, but I am so thankful for weekends like this, when I am reminded that I am not carrying this burden alone. I am incredibly blessed to have the best group of friends, family, and supporters that help me carry my burden every day. Mostly, I am thankful that I can lay my burden down at times knowing that my efforts are not wasted and my fight will carry on.
When I reflect on this weekend, I won’t linger on the heavy and hard parts. Instead, I will focus on the truth that it truly is Team Kendall, not just Kendall. No one can power through life on their own, especially in a life with FA. We should all celebrate the help and support we receive, instead of being angry for needing it. That’s what I plan to do.