When losing our abilities to FA, the feeling of grief is real

Mourning can be as necessary for a function as it is for a person, I've found

Jean Walsh avatar

by Jean Walsh |

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Unsurprisingly, after steering my wheelchair into a wall for the fifth time that day, I found myself amid a temper tantrum. For me, these usually involve yelling curse words at Friedreich’s ataxia (FA), the disease I have. In this particular meltdown, I wanted to ram my wheelchair into the drywall. I didn’t, but I wanted to.

I hate to admit to this lack of control, but I think it may resonate for many with or without FA.

This emotion feels like frustration. When Wendy, my service dog, was awake and curious, I used to tell her, “It’s not you, sweet girl. I’m frustrated.” Wendy would look at me with her big brown eyes, wondering what the ruckus was about. Now she keeps on sleeping because she’s used to it.

Yelling at home to release my frustration feels like a necessary outlet, and I reassure myself that I’m not hurting or bothering anyone. The relief I would’ve felt by destructively punching a hole in the drywall isn’t worth the price of figuring out how to patch it or feeling ashamed because of my inability to express myself in a prosocial way.

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Can joy and grief coexist? In my life, they do.

It’s grief, and it’s OK

If I’m being honest with myself, however, it’s not simply frustration that I’m experiencing. It’s grief.

Grief is often associated with the sorrow of losing a loved one, but there’s another dimension to it that’s equally profound yet seldom discussed: the grief of losing function, autonomy, and the future as one envisioned it. The relentless progression of FA has meant that my frustration and grief are frequent companions — companions I don’t want, but can’t deny.

I, and many others, have lost a lot of functioning since diagnosis. It’s taken me a while to realize that mourning the loss of functioning doesn’t mean my grief is more or less important than the grief of losing a loved one. Besides, in our brave FA community, there’s plenty of loss of people we love, too.

I’ve realized that I have the right to mourn. After all, I used to be able to walk, type at a decent speed, hang a picture on the wall, and do many other things. I understand that hanging a picture on the wall may seem trivial to many, but it’s a skill I’ve lost to FA. My grief over that loss is perfectly normal. In fact, it would be abnormal not to experience grief.

I’m not trying to compare the grief of loss of ability with the grief of losing a loved one. I’m simply saying both are to be expected and acknowledged as important emotions.

Fortunately for me, that bad steering day was an anomaly and not another permanent loss. A couple of days later, I’m appreciating the transience of that loss. In life with FA, it’s often the hard-to-bear truth that losing an ability is permanent. I’ll continue to express my anger, grief, and frustration over my loss by yelling into the void. Expressing my emotions in that way helps me to move on and keep advocating for myself and my beloved FA community.


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.

Donna Dockery avatar

Donna Dockery

Thank you for sharing this and educating us through your experience. It’s easier to give grace when you you have a picture of what’s going on in their minds and emotions. My 14 yr old granddaughter is on this journey and we are all learning and walking it with her. ♥️

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Jean Walsh avatar

Jean Walsh

Hi Donna, Thanks for taking the time to give me feedback. I am so glad my little column is helping you understand your granddaughter. I wish she didn't have FA, but I hope she and all her loved ones feel the warmth and welcome of our community. Jean

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Melissa Churchard Hannon avatar

Melissa Churchard Hannon

Jean - a beautiful piece of writing about the ugly side and depths of grief. I hear you and you are loved.

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Jean Walsh avatar

Jean Walsh

Thanks Melissa!

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Greg Gannon avatar

Greg Gannon

This heartfelt response came at a good time for my son to read. Thank you, also very well written.

My son was diagnosed with this disease 14 years ago. After many tests it was finally indicated to us, as his parents, what had been going on with his fine motor skills and mobility for 5 years (due to the onset of this disease). We had him when we were 40 years old and his sisters did not show any signs of having it. Our hearts were broken for him and my wife endlessly searched for a doctor to allow him (and us) to understand the disease. She found one who allowed us to feel hope again.Our son was going through so many different emotions due to his frustrations and my wife and I tried everything suggested to help him. But, as all people know that have been battling Friedrich's ataxia, the medications helped for a while until something new came out to replace the other medication, but then when it seems to be short term, what’s next? I could tell his frustration was growing and seeing our wonderful son, a student in school who later graduated with a 4.0 grade point average, battle this disease was heartbreaking. He began to yell out at different points, expressing his frustrations as the author indicated in the article, which he needed to do…but later he took that frustration to working out every other day. He built up his body to an amazing physical change, very muscular but the FA didn’t quit… so he doesn’t know where to go with his frustrations now. He didn’t want to discuss it with us, as his parents. But showing this article to him will make him realize it’s okay to let go and verbalize his frustrations out loud if that helps, in any way or anything that helps him. He is such a loving, intelligent, beautiful man of 26 years old, we only wish he had a female friend to talk with him that understands his frustrations… what shatters our hearts is that he says, ‘dad, after I meet women, I can hardly go out without so much assistance being in this chair’ ‘where do I go from there’, oh how we hope that he finds someone which I think will help him. Expressing his frustration out verbally, working out, playing the online games with his friends, talking to us and his friends from high school all help and even short term discussions with women he met online still doesn’t seem to be enough.

Are there any new trial medications, because that always seems to help more than anything - meaning hanging on until they find a cure for this disease. I know many others are suffering with FA and I pray the medical community finds an answer soon. Articles like this not only helps the person struggling with the disease but also the caregivers too. We realize, there are voices out there that express the same frustrations which means we are not alone.

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