A Page for Paige

A Page for Paige

Until recently, I genuinely thought I had a grasp on my life-shorting diagnosis. I lost that grip the moment I heard a fellow FARA Ambassador had suddenly passed away.

Paige Myers was the most loving, sweetest, smartest person with a heart of pure gold. By no means were we best friends or did we know each other in-depth or even speak frequently. But her bright light, loving personality and warmth always made her presence enjoyable and a pleasure. People like that have a tendency to leave an imprint on anybody’s life.

We got to experience FARA Ambassador training in Philadelphia together. We sat next to each other for about eight hours while Jen Farmer and Kyle Bryant broke down each part of being a FARA Ambassador and critical information about FA and FA research.

Paige Myers
Paige Myers

Paige and I exchanged stories about college, her love of Harry Potter, our diagnostic processes and our views on life. She was gentle in her speech and mannerisms, yet passionate when it came down to talking about any of her interests. She was a person who made FA seem like a blessing, which is something I wholeheartedly took away from our conversations. It’s something I’ll always thank her for showing me.

A wonderful article about Paige’s impact at Case Western Reserve University gives a nod to her legacy and describes the kind of person she was to those around her:

“Myers, who used a wheelchair since her senior year of high school and a walker since age 12, was known among colleagues and friends for her positive attitude and problem-solving skills. Biology professor Hillel Chiel had ample opportunity to observe both traits during the two years she worked in his lab.

“‘She had an infectious laugh,’ Chiel recalled, noting that he often left conversations with her feeling energized by her kindness and generosity.”

Paige had just moved into an apartment, just started grad school and just burned a grilled cheese, which she humorously shared on Facebook. On Sept. 1, at 22, she lost her battle with Friedreich’s due to heart complications (which most FA patients face). The FA community has had a few big losses this year. Unfortunately, I didn’t have the privilege of knowing them, but I had the honor of knowing Paige.

Her loss has had an unexpectedly strong impact on my life. I was already going through a typical depression spell, and news of her loss just solidified my position in that dark hole. It has been almost three weeks and I have barely left my house. The only times I have stumbled out were to attend physical therapy or a scheduled fundraiser.

This happens regularly. I go through phases of “I hate everyone and being in public” to “YOLO, I’m going everywhere.” I haven’t been exercising as usual, and I’ve called in food delivery way more than I should. I was in a funk for longer than before and the depression was something I couldn’t avoid. Her sudden departure had me re-evaluating the grasp I thought I had on having FA. You can act all you want like you have your life together, but once you experience the loss of someone like Paige, it becomes apparent that you have no clue what you are doing.

She is someone I think about every day now. She was a motivator, a game-changer, cure-finder and, most importantly, a life-lover. One of my daily mantras is “leave a legacy of change and positivity” — and I think Paige set the bar on that exact type of legacy. Cheers to you, Paige!

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Note: Friedreich’s Ataxia News Today 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 other 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 Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.

6 comments

  1. Seamus says:

    Thank you, Frankie, for your candour, your humility and sharing your gratitude and your grief.
    Your article, I hope you realise, continues Paige’s legacy.
    I had not met Paige, but I keep in touch with the FA community due to my step-son’s FA and am saddened to learn of each others’ challenges and our losses.
    I think it is important to all of us, whether we are FAers, family, friends or citizens of the world to continue carrying the torch and, as you shared, to leave a legacy of kindness and contribution.

  2. Gwen says:

    Dear Frankie, Thank you for sharing your grief. Thank you for letting me get to know both you and Paige, even a little bit. Every connection between those affected by FA and all the myriad brain disorders…makes us stronger as a whole, even when one of us is lost to our 3D world…It sounds to me like Paige did what every hero is supposed to do. She made this world’s burdens lighter. Your grief is not light. No one’s grief is light…but those we no longer interact with in the traditional sense, shine on in us. It is excruciatingly hard to pick up and keep up the good fight when someone we care for falls…but when we get up again, we no longer just get up for ourselves, we are getting up for them too. Every inch forward in this journey if both for our own fight, and the for the child born today with this future in front of them. They may not be our own physical children, but they are our children in sickness, and if you, Paige and the rest of us can keep moving forward to the best of our ability, our children in sickness will one day walk in health.

    I know how much it hurts…denying that it hurts, actually hurts us more. I will exercise a little extra today in honor of Paige, and shoulder to shoulder with you in spirit. From your description of Paige, she might like that idea.

    Yours in future wellness,
    Gwen

    • Frankie Perazzola says:

      Thank you, Gwen. I appreciate youre insight and perspectives on grieving. Yes, it can be so difficult but having people actually understand my position makes me feel better. Thank you for your feedback!

  3. Chris Myers says:

    Thank you, Frankie, for sharing your thoughts about Paige. One of the many things I’ve thought about the past three weeks since Paige’s death is the effect it would have on her fellow travelers – patients and families – on the FA journey. It’s hard. But everyone’s fight against FA is unique, so work hard and stay hopeful for yourself and all the others who Paige left behind.

    • Frankie Perazzola says:

      Thank you, Mr. Myers. I am happy I could help shed some light on her impact, she truly was remarkable. Your family is in my thoughts and prayers.

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