“Pain is inevitable, suffering is optional,” my husband, Dave, said to me. It’s one of his usual platitudes, and most of the time, I let it pass without much thought. But the last time he said it, I was mired in the mud of self-pity. I heard him and thought,…
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…
I am entering the joyful, frenetic, and sometimes frustrating fundraising season for my Friedreich’s ataxia (FA) patient organization, the Friedreich’s Ataxia Research Alliance (FARA). Every year, I go into it with big numbers in my head about how much money I am going to bring in. Deep down,…
My husband, Dave, came home the other day to me screaming cuss words in the bathroom. This time, I was yelling at my bladder, which was threatening to explode before I could get to the toilet. Dave strode past the bathroom without greeting me, as he usually does. These very…
I imagine young people with Friedreich’s ataxia (FA) must search the internet to learn more about their diagnosis. Maybe they will come across this column. So this week, I will write to them. When we are young, our friendships are central to our lives. But after I was…
I recently watched a video that showed people dancing, hugging, and laughing together, their sense of community shining through. The video, which was shared on Friedreich’s Ataxia News‘ YouTube account from April’s Annual Ataxia Conference, filled me with both envy and pride. When I was diagnosed with…
Today I went into my kitchen to make a chicken sandwich with cheese, which sounded like the perfect idea for lunch. Fresh bread, some lettuce, a little mayo, salt and pepper — all these ingredients would make my sandwich sing. First, I pulled the ingredients out of the fridge. My…
Yesterday, I woke up with a long to-do list, but I didn’t want to get out of bed. Simply sitting up in my cozy, adjustable bed and watching YouTube all day was what I wanted. The covers were calling me to stay. But, like most people, I had to pee,…
A few days ago, I heard a scientist talk about the randomness of being born. For example, what are the chances of your parents — and all of their ancestors — meeting? Then there’s the sperm that wins the race against millions of others to the egg. It all seems…
This morning, I did my usual thing. I woke up, stayed in bed, took one pill, waited half an hour, and then took three more pills. During that half-hour, I meditated and caught up on the news on my phone. This routine helps me remember to take my pills. If…
I’ve heard the term “wheelchair-bound” in the media a lot lately. I hate those words. I use a wheelchair because of the symptoms of the disease I have, Friedreich’s ataxia (FA). These symptoms — muscle weakness and neurological problems — mean that at this point in my FA…
Nobody likes getting sick. I’ve been battling a stubborn flu virus for a few weeks now. It’s likely the same one my husband, Dave, had for just four days. Not fair, I joke with Dave. Not only am I dealing with this bug for much longer than he did, but…
Last Monday night, as my husband, Dave, left for a weekly meeting, I tearfully wished him well. He looked at me, baffled. The cause of my tears? I had decided to watch the newly released “Matter of Time” documentary on Netflix, which features Pearl Jam frontman Eddie Vedder and…
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