Grief and joy: Holding on to two realities with Friedreich’s ataxia
It’s OK to acknowledge what's hard, just like it’s OK to acknowledge what's good
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Last weekend, my mother, daughter, and I went to a glass-blowing studio to make decorative glass pumpkins. It was such a fun experience, and we learned so much about the 2,000-year-old art of glass blowing.
I am now fully dependent on a wheelchair due to my Friedreich’s ataxia (FA) symptoms. It’s my permanent reality and one with no days off, even for fun outings like this one.
At the event, I was able to be fairly hands-on, but it was safer and more efficient for my mom or the instructor to complete a few tasks for me. The instructor who helped us create our pumpkins was so lovely and did a fabulous job accommodating my wheelchair and my physical shortcomings. Because of FA, I move slowly, and my decreased hand dexterity made me unable to twirl the stainless steel rod the pumpkin was formed on.
The main point is not FA
Later at home, we had a fun evening full of laughter and joy as we started celebrating my son’s 12th birthday, but that night, I snuggled in to pray with my 9-year-old daughter, Collins, and I could tell something was weighing on her heart and mind. I asked her what she was thinking about. She quietly asked me, “Will you always have Friedreich’s ataxia?”
I could so clearly see her thought process; she was thinking back to watching her grandma and her mom doing a fun glass-blowing activity, and I’m sure she noticed how I struggled and had to accept help, which I did with a smile because I am very used to needing help and I have made my peace with it, as much as I can.
I replied simply: “Yes, sweet girl, I will need this wheelchair for the rest of my life.” She sighed deeply and said, “I’m sorry, Mom.”
I said, “I’m sorry about that, too. I certainly wish that I weren’t in a wheelchair, that I were like the other 39-year-olds who don’t have FA. I wish that a wheelchair didn’t complicate my life, and that this disease weren’t a part of our lives. But it is just that, a part of our lives. It’s not the main point.”
Then we talked about all of the fun things I still get to do or be a part of, and that it was my wheelchair that let me do many of them, for which I was grateful.
It was so validating and gratifying to hear her summary of the fullness of my life, the travels that I’ve been blessed to enjoy, the routines that I get to be a part of, like watching my kids in their chosen sporting activities, or driving carpools, hosting fun dinners and get-togethers, attending field trips, substituting at their school, and so much more.
I did not have the heart to explain the progressively degenerative nature of FA because that is something I struggle to wrap my brain around, even though I’ve had 13 years to process what that means. It just felt like too much to put on her sweet shoulders in that moment. But I know, given the uncertainty surrounding my future health, this was just one conversation of many about the realities of FA that I will have with my children, friends, and family.
My main point to her was that it’s OK to feel whatever you feel about something big and life-changing like FA. It’s OK to process it out loud in a safe space and take it as it comes. It’s OK to acknowledge what’s hard about it, just like it’s OK to acknowledge the good in it. They don’t cancel each other out. Both realities — that life would be better without FA and that life can also be great even with FA — can be true at the same time.
“There is a time for everything, and a season for every activity under the heavens … He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.” — Ecclesiastes 3:1, 11
Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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