Learning that life is about taking the good with the bad

Taking the good with the bad is a hard lesson to learn, but I’m realizing it’s imperative for approaching a healthy mindset when living with a steadily progressing disability.

Friedreich’s ataxia (FA) is a daunting diagnosis to receive. In 2013, when I was diagnosed at the age of 25, I had trouble imagining much good in my future, which was now infused with a lot that was medically bad. Yes, I was married to the love of my life, and he was supportive, patient, kind, and encouraging — everything I could’ve wanted for a situation like mine. But how could we acquire any more good things in our lives now that we were wrapped in so much bad?

I naively thought that since I was suddenly destined to be disabled, that was all my life was destined to contain. I was so dramatically uninformed that I felt my life would only contain what was sad, hard, painful, expensive, and lonely.

I thought that any future children we might have welcomed into our family were now impossible. I thought that I wouldn’t be able to see the world through travel because it’d be too hard. I thought that my friends would slowly distance themselves because they simply couldn’t relate to me anymore.

As I said, I was naive and dramatic and couldn’t see past the bad. I couldn’t see any good coming our way anymore.

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Welcoming the good

Little did I know, but a world of good was coming our way. We welcomed two perfectly healthy children who fill our lives with more purpose, joy, entertainment, motivation, fulfillment, and good than we could’ve possibly imagined. I’ve traveled to Hawaii, Toronto, the Cayman Islands, Costa Rica, Italy, Mexico, and all over the continental United States, all at varying stages of my symptom progression. My friendships, both new and old, are deeper and more authentic than I ever thought possible.

Yes, my FA has affected all of those good things in my life. Yes, a lot of those effects are negative. But I still think my life is filled with way more good than bad.

I was recently talking to a loved one who found themselves in a negative thought pattern, weighed down by thoughts about all of the hard things in their life. After advising them to seek professional help, I encouraged them with this thought: “It’s possible to both love your blessings while despising your curses and seeing that there’s often a balance to the good and bad in your life. Try to find a way to feel comforted by the good.”

In my experience, it all works together. Some seasons feel like the scales have tipped one way while others feel tipped the other way. It can be hard to see the good when I feel surrounded by bad, just like it can be hard to worry about the bad when surrounded by good.

I often reference Disney movies because 1) given my children’s ages, I’m in the Disney season of life, and 2) I just love stories with happy endings. The 2018 film “Mary Poppins Returns” is a favorite in my household. At the end of the movie, they sing “Nowhere to Go but Up.” The song starts with these lyrics:

“Life’s a balloon

that tumbles or rises

depending on what is inside

Fill it with hope

and playful surprises

and oh, dearie ducks

then you’re in for a ride.”

It’s my belief that no matter what surrounds you, be it good or bad, you must find hope — hope that the bad will be outweighed or that the good things can last, and most importantly, that whatever bad you’re surrounded by or see in the near future, more good is on the horizon.

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” — Romans 8:28 (New Living Translation)

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.