Thanking my dad for the best advice I ever got
It applied to both FA and life in general
Like many people dealing with traumatic medical problems, I vividly remember when I was diagnosed.
For me, that happened before they had even identified the Friedreich’s ataxia (FA) gene, so I had to endure lots of difficult testing. Today, the FA gene is identified through a blood or saliva test.
My family and I were beyond anxious waiting for answers. Our imaginations ran wild with both the best and the worst possible outcomes on any given day. I’m grateful the internet didn’t exist back then.
The neurologist who diagnosed me was a brilliant diagnostician who recognized the possibility that I might have a rare disease. But he had a lousy bedside manner, and basically told me, “There is no treatment and no cure, and it will be a short and hard life.” He also didn’t provide us with any resources, such as a social worker, a physical therapist, or anything else beyond an annual neurology appointment.
Around that time, my dad advised me to “deal with what is happening now, not what might happen.” It was the best advice I’ve ever received, and I’ve leaned on it for 43 years.
Elaborating, he said, “That doctor is very smart, but he can’t predict the future. He is sharing averages with you. He doesn’t know exactly what your future with FA holds.”
Thankfully, my dad was right and the doctor was wrong. I’ve outlived his prediction regarding my prognosis by almost 30 years, and although death is ahead of all of us, it’s not in sight for me right now. Additionally, I started using a wheelchair 20 years after the doctor said I would.
Like everyone, my life is hard sometimes, but it’s not miserable. I have plenty of joy and laughter. I credit my dad with empowering me to avoid turning the doctor’s predictions into a self-fulfilling prophecy.
I’m sure lots of advice like that has been handed down throughout the ages. My dad doesn’t take credit for the uniqueness of it. But there is nothing like knowing that a loved one has your back and believes in your ability to make a good life for yourself.
I don’t always succeed in focusing on what is happening right now. As a normal human being, my mind often strays into the anxiety of what my future holds. But worrying and being overwhelmed by the future can significantly inhibit my ability to care for myself in the here and now.
Back when I was diagnosed, doctors didn’t tell me to exercise, as there wasn’t any research about it yet. But my parents and I both felt that it would be a good idea. That turned out to be true. If I’d focused on the “what-ifs,” I could’ve easily let my exercising slide. If I’d given in to negative thinking, I might’ve decided that “FA is causing my body to degenerate, and exercising won’t stop it, so why bother?”
That’s just one example of how my dad’s advice continues to help me today. I rely on it for more than just managing FA.
It’s a freezing cold day here in Massachusetts. My gratitude for Dad’s loving advice, and for always having my back, keeps me warm.
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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