How reframing my mindset helps me navigate life with FA
I will focus on getting what I want and need out of life
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A few years ago, I heard some advice about the power of perspective. It was framed as parenting advice, but it translates so well to nearly every life-planning situation.
Julie Richard, founder of the Fearless Mom ministry, explained that the “most common question I get is, ‘I don’t want my kids to be entitled, [so] how do I stamp that out?’” She continued: “Instead of telling me what you don’t want, like entitlement, tell me what you do want, like humble, empathetic, aware, and work toward that instead of away from something.”
This mindset of working toward something instead of working to avoid something has really shaped my journey with Friedreich’s ataxia (FA) by acknowledging the power of the word instead.
A Bible verse that I often contemplate is Philippians 4:6: “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.” It seems so simple, yet it’s hard to do. Telling an anxious overthinker not to worry can seem like an impossibility, but then you are told to “instead, pray about everything.”
Whether you believe in the power of prayer or not, I have personally found it quite challenging to feel both anxiety and gratitude at the same time, so I think the power of “instead” can be used in all forms of meditation, prayer, and goal-setting.
FA as a catalyst
The other day, I was writing a card to place in my daughter’s trunk to read while she is at sleepaway camp. I made an acrostic poem with the letters of her first name, and it got me thinking about the common negativities FA has brought into my life and how I’ve learned to focus on the positive instead of the negative. I wanted to take a moment to share examples of this using the word “Friedreich’s.”
“F” for fearful: Instead of being afraid of what FA might do to my body in the future, I choose to focus on what I can do to make today successful and safe.
“R” for restricted: FA has brought many limitations to my life, but rather than focusing on what I can’t do, I focus on finding ways to safely do what I can and want to do.
“I” for independence loss: FA has taken a lot of independence from my daily life, but mobility aids have enabled renewed independence, even if it looks different or undesirable. I think being able to do things safely for myself instead of depending on others is worth celebrating.
“E” for energy loss: FA drains its patients of energy. I have a very limited supply every day, and strategically allocating my energy affords me the opportunity to be intentional with my priorities and helps me focus on self-care and self-advocacy.
“D” for damage: I have suffered a lot of damage in the name of FA, physically, mentally, and emotionally, but that also allows me to learn from my mistakes, share the lessons I’ve learned, and do better next time.
“R” for reclusive: I get very tempted to retreat and not “put myself out there,” try hard things, or leave the comfort of my home. While there is value in safety and comfort, there is also value in pushing yourself and learning.
“E” for exercise: My workouts have changed significantly since FA impacted my abilities, but even though working out now is hard and different, the adaptation is worth it and important.
“I” for irreversible: As of right now, FA and its progressive degenerative symptoms are medically irreversible, but there’s hope. There are a variety of therapies in the works that could potentially help move us in a better direction; we just need to be patient.
“C” for callous: Dealing with limitations and the adaptations that require 24/7 attention can harden me. I must intentionally see the good in life to stay hopeful, happy, fulfilled, and helpful instead of calloused.
“H” for helpless: FA makes me feel helpless at times, but in my 13 years with the disease, I’ve realized that it’s OK not to be OK, and it’s OK to need help. Everyone needs help occasionally, regardless of physical disability.
“S” for sadness: FA causes an unavoidable sadness in my life, which creates opportunities for adaptation, prioritization, and innovation. That can lead to more awareness. Sadness can also force me to slow down, rest, and recharge.
Instead of focusing on the negative effects of living with FA, I will focus on getting what I want and need out of life and let FA serve as a catalyst to refine my plans. Instead of being a victim, I will be a warrior. Instead of “having FA,” I will “thrive with FA” through grit and grace.
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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