A Letter to My Newly Diagnosed Self
Dear 2013 Kendall,
Your world was just rocked and turned upside down. I know you feel like your future is an impossibility now that Friedreich’s ataxia (FA) has clouded your blue skies. I am here to tell you that yes, that future is gone. But it doesn’t mean you have no future!
Your future will change for better and worse. And it is a wonderfully wild ride that you will learn to love.
As someone who is eight years into the FA journey, I can offer some advice.
Keep your friends close. Those in your village want to help you, and you will need them. Your friends might not fully understand what it means to have FA because they aren’t physically experiencing it themselves. But they will want to hear everything you are willing to share so that they can advise, sympathize, encourage, assist, and support you.
They will want to help you carry the burden of FA and lighten your load. Be upfront and honest about your journey and open to what your loved ones have to say, even when you are bitter or heartbroken. Especially then.
Stay vulnerable, real, and honest. You will be closer to your friends than you ever dreamed possible. This is one of the best parts of your life as an FA patient.
Know your enemy. Learn everything you can about FA from doctors and the community of fellow FA patients so you can approach your lifelong battle against FA proactively. Friedreich’s ataxia is a cruelly progressive enemy that will creep into areas of your life you never expected. Partner with your doctors and members of the community for help.
Go to physical therapy to help strengthen your body. Take your vitamins and medication. Invest in devices that will prolong your independence and keep you safe. Maintain a healthy diet and get enough sleep when you can so that you are doing everything within your power to enable your body to fight against the disease.
Accept help humbly, graciously, and without beating yourself up for needing it. FA is not your fault. Accepting help is not admitting defeat, it’s the opposite — it’s your way of bravely continuing your life despite the challenges FA has put on your path.
You can depend on a countless number of genius devices, including a walker, which will be an emotional process and a hard adjustment. But you are stronger than you think. You will have to constantly redefine “independence” based on the progression of your symptoms, but you can do it, and it is worth it. Keep accepting help to fight for the life you want.
Your life isn’t over. You can still strive for joyful things. You are worthy and deserving of all of the wonderful things this world has to offer. FA will change logistics and timelines, but it doesn’t mean you have to give up on your dreams. You can still go on adventures, try new things, see new places, have babies, rescue animals, work, make new friends, and chase new dreams. There is so much joy in your future.
FA changes the how, but not the who, what, or where. FA doesn’t make all of the happy things in your life any less real or any less worthy of celebrating.
You are fearfully and wonderfully made. Because you know Psalm 139, as time goes by and your symptoms progress, you will become intimately aware of the “fearfully” made parts of you. It is easy to celebrate the wonderfully made parts, but if you vulnerably share the fearfully made ones — those affected by FA — God will use it to shine goodness, grace, patience, love, and joy to those around you.
Your weakness will become your strength. When you wake up every morning, make the difficult decision to embrace your reality for better or worse, including that which is fearful and wonderful, easy and hard, good and bad. You are exactly who God made you to be. If you keep trusting that and embracing your future, you will live a beautiful life.
In the years to come, you will laugh and cry harder, and love more deeply than you ever thought possible. Keep fighting. Your future is amazing. You are strong. You are worthy. You are capable. You can do it.
Sincerely,
2021 Kendall
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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.
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Comments
Mandie
Beautifully written and the first uplifting FA post I've read. My 11-year-old daughter was diagnosed with FA on July 15, 2021. We are at the beginning of this journey. I truly appreciate your words and plan to refer back to this article for strength and encouragement. We live in Dallas, TX.
Gesa Mitchell
So true and wonderfully written. There is so much hope out there! We live in New Zealand which just became a trial site for a global drug trial for FA which is absolutely fantastic for a small country at the “most beautiful end of the world”.
(Mother of Flynn, 18 yrs, diagnosed in 2018)