How My New Approach to Spirituality Helps Me Cope With FA

Frankie Perazzola avatar

by Frankie Perazzola |

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spirituality, accommodations, internalized ableism, broken bone, fitness, newly diagnosed, reflecting

Religion and spirituality have always been tricky subjects for me. I was raised in a traditional Italian and Catholic household where baptisms, communions, confirmations, and the rest of the sacraments were highly celebrated. I was pushed to attend Mass every Sunday and holiday, and to volunteer or serve at our local church.

As I grew older, that pressure led me to not believe in God and distance myself from religion entirely. After my Friedreich’s ataxia (FA) diagnosis, I didn’t believe there was a God at all. I now have a great relationship with the universe, God, and Mother Nature, which helps me deal with FA.

How can there be a God if I have to deal with something like FA? How can there be a God if beautiful people are constantly taken from earth? How can there be a God when there is so much pain and suffering?

These questions flooded my brain whenever people asked what I believed in. It used to be difficult to admit I wasn’t knowledgeable about a topic or explain why I felt the way I did. I resented that about myself and always found a way to dodge those types of questions.

I set sail on a spiritual journey last year. Given everything that was happening at the time, and the amount of hatred, misunderstanding, and evil that I saw in the world, it seemed apparent that the devil did indeed exist. I had an overwhelming feeling that if evil existed, and if the devil was present, then it was possible for God and good to exist as well.

While I don’t subscribe to a specific religion, I do believe in a creator or a God. I also believe that we all have different interpretations of what our creator looks like. Whether it’s a man, woman, or even an animal, we all depict the concept of God differently. I think it’s beautiful that we have a right to look up to whomever we want.

I also believe that God, or our creator, can’t exist without the universe or Mother Nature. I see these as three separate entities. They all have different energies, and they all depend on one another to live. Whenever I pray or meditate, I send light to all three. The universe, or cosmos, has its own beautiful and powerful energy. Mother Nature does, too, and provides us with beauty, including the sun, grass, flowers, and ocean.

Reestablishing a relationship with God, as well as introducing two new energies to worship, has completely changed my relationship with FA. I no longer ask, “Why me?” I no longer feel sorry for myself or hate my body. I have an easier time accepting my diagnosis and the lessons it’s teaching me.

I completely understand how frustrating it can be to hear other people say they are thankful for their disease. I’m not thankful for what FA takes away from me daily. I’m definitely not thankful that I have to work so hard for the small things. But FA has sent me down certain paths and presented me opportunities that have changed my life for the better.

I’ve met wonderful people, learned patience and compassion, and found my purpose. Having FA has made me extremely grateful for human life, breath, existence, pain, struggle, and growth. Now I actually slow down to see how beautiful the journey of life really is.

Although my perspective may be different than yours, my relationship with Mother Nature, the universe, and God has been instrumental in my approach to FA in the past year. I’m no longer angry at my body for malfunctioning or being different than everyone else.

I’ve made peace with the knowledge that my body is a vessel; it’s a house for my soul, and that’s what I have control over. The physical aspect has nothing to do with who we are. It’s all about what’s inside.

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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.