A Perspective on FA From My Able-bodied Sister
Thoughts range from guilt to pride for a lone sibling without a rare diagnosis
What’s it like to be the only sibling out of three who doesn’t have a rare diagnosis?
As I fumble my way through living with Friedreich’s ataxia (FA), I want to know what life looks like to my able-bodied sibling — my youngest sister, Mckenzie, who went by Kiki in her younger years. I asked her for a glimpse of life through her eyes as she witnesses the daily progression of FA as it stole most of her brother’s and sister’s physical abilities.
I’m grateful that she agreed to share her perspective for this column. The following are her thoughts, lightly edited for space and clarity.
This little victory is yours, Kiki.
Guilt. If I could only use one word to describe how I felt growing up as the only sibling without Friedreich’s ataxia, the word would be guilt.
Many people might say I’m lucky, and I have to agree that the cross I bear is nowhere near as heavy as my siblings’. But I never understood why my brother and sister had to go through these horrible changes and I didn’t. I always wished there was something I could do to make this go away for them.
I was only 4 years old when my brother and sister were diagnosed. Being the baby of the family — Matt was 9 and Morgan was 7 — I didn’t understand much about anything at the time, but I can remember tagging along to what seemed like thousands of doctor appointments. I would see them get poked and prodded with so many needles, test after test. I knew something was wrong, but didn’t understand the gist of it at the time.
I vividly remember the years before their progression, playing with them as active, young kids; swimming, running, fighting — all the things normal siblings do together. As the years went on, I could see their balance changing and the symptoms progressing, worsening.
I still didn’t know very much about FA, but boy, did I pray for a cure. Still today, every day, I pray for a cure.
As a mother myself now, I also feel guilty for our parents, knowing they would do anything to cure their children, but never finding that cure. They searched everywhere for it — from any and every doctor around, to a study at a hospital in Washington, D.C., to the healing waters in Lourdes, France. My parents never stopped fighting for Matt and Morgan.
Instead of guilt, now if I could only use one word to describe how I feel about my siblings, it would be pride. They have faced so many trials and tribulations, but they never quit living life to the best of their ability. They have always overcome the odds that were stacked against them. My siblings are an inspiration to me!
My brother works full time and stays active, making time to ride his recumbent trikes every single day. He’s also a huge advocate for finding a cure for FA. He has more friends than I can count, with a very busy social life that goes along with them.
My sister is also busy at work and rides her own recumbent trike. Not to mention that she is happily married and taking care of three beautiful children of her own.
Not many people would be as successful as my siblings are if they faced FA, myself included.
It seems that we’re getting closer to that cure my whole family has always prayed and fought for, and that makes this sibling happy.
Survivor’s guilt is awful, and that might be what you wrote about feeling, Kiki. And while Morgan and I physically struggle with FA, the emotional and mental toll of guilt is tremendous. So in that way, you struggle with FA, too. Welcome to the club.
I love that while your story begins with guilt, it turns into pride. By acknowledging the uglier side of life, we’re able to find beauty. From guilt to pride. From shame to strength. From FA to little victories.
How has rare disease or chronic illness affected your family’s relationships? Please share in the comments below.
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.
I always wonder how my daughter feels about her brother Gavin being diagnosed with FA. She is 21 and he is 17. He was diagnosed at 17. I was sick with worry that she would have FA as well. Our genetic counselor said she more than likely would have already shown symptoms. She has decided not to have genetic testing until she decides to have kids. I wonder if she feels pressure that she will have to take care of Gavin when I die. I wonder if she feels guilty like your sister did. She was a guiding light for me in the month following the diagnosis. I was so scared and felt so much pressure to get a million doctors appointments scheduled. I was physically in pain thinking FA was going crush us immediately. My daughter Casey, reminded me over and over, "Gavin is still Gavin". Again and again she reminded me of that. It's true and it has been for the last year and 8 months. Gavin is Gavin, but a stronger, more stubborn version of Gavin. I am so glad we have such great mentors to look up to....and your article inspired the application to Canine Companions. Epic is such a wonderful addition to Gavin's life. Thank you for the inspiration!