Today, the cabinets, tiles, and other materials for our new kitchen were delivered, and suddenly the renovation feels real. I love the cabinet colors, flooring, backsplash, and everything else I picked out. But now that it is all here, stacked in boxes and waiting to be installed, I keep worrying…
Defining Yourself — Jean Walsh
Jean Walsh hails from Massachusetts. You will find a mental health perspective in her writing, reflecting her two mental health graduate degrees. She has years of work experience, the most pertinent being her experience as a grant writer. Jean was diagnosed with Friedreich’s ataxia (FA) when she was 19, and has been an avid FA volunteer since. She is 40 years into her journey with FA and so has a lot of experience to share with her shared FA, rare, and chronic disease communities.
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Sometimes people ask me what I do with myself all day. I know the question is probably meant casually, maybe even kindly, but it lands hard. I’ll feel myself get flustered, the way I often do when a question carries an assumption I cannot quite name in the moment. Before…
My husband, Dave, and I recently drove by the mansion where we were married and had our reception. Back then, it was a beautiful, grand old stucco building with a yard behind it where we had our ceremony and a breathtaking view of the ocean. We were lucky: It was…
Ever since I was a teenager, my mission has been to leave this world a better place than I found it. I have done my best to do so in small ways, like thanking and smiling at the waiter serving me shrimp scampi, and in bigger ways, by designing a…
Recently, my sister Lisa asked me, “Why do you always write your column about sad things? You’re a happy person.” I had to think about that. I think part of the answer is that I write about Friedreich’s ataxia (FA), the biggest and most ever-present challenge in my life.
As I write this, noise fills my house: the nail gun, the power saw, and the construction workers’ radio. I can feel my hard-earned routine for living with Friedreich’s ataxia (FA) slipping out of reach. I keep reminding myself that each bang and disruption brings us closer to an…
A couple of weekends ago, someone said something I hear all too often: “You are so lucky to be able to bring your dog with you.” I know they meant it kindly, but my first thought was, “Lucky?” Wendy is not just my dog. She is my service dog.
I help lead teen hangouts for the Friedreich’s Ataxia Research Alliance (FARA), so I hear about the trauma often faced by these strong, emerging adults with Friedreich’s ataxia (FA) and other forms of ataxia. Their stories pull me back to my own diagnosis 44 years ago. As someone…
My husband, Dave, and I have been trying to think of fun, inexpensive things to do this summer. That sounds simple, but my disability from Friedreich’s ataxia (FA) makes it complicated. Sometimes the hardest part of disability is the way it changes ordinary pleasures. We live near the ocean…
I heard a story on the radio a few days ago about wheelchair repair. It was one I could relate to. Because I have Friedreich’s ataxia (FA), I use a wheelchair. Recently, it took more than a month to replace a small, nonessential part of my chair. I…
I spent most of last week providing the state with documentation of two things I already live with every day: my disability and my need for assistance. I am disabled because I have Friedreich’s ataxia (FA). I was doing it for a state program that offers loans with…
I recently finished the book “The Midnight Train” by Matt Haig, and one line at the end stayed with me. The protagonist, speaking to a younger version of himself, urges him to make his wife happy. My immediate response was, “No, no, you can’t make other people happy.” My reaction…
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