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…
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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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…
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…
Frustration is found around every corner in my life with Friedreich’s ataxia (FA). I get frustrated about many things, macro and micro. This can range from the inaccessibility of public spaces (macro) to struggling to find the armhole in my hoodie when I get dressed in the morning (micro).
My mom died almost 10 years ago. Her birthday is tomorrow, Jan. 27, the same day that Holocaust Memorial Day is observed, and I always think of her on it. She passed on many strengths, including her loyalty to those she loved. She always spoke of my grandfather with reverence,…
On a chilly January day, my husband, Dave, and I took down our Christmas tree. I love those two to three weeks each year when my Christmas tree sparkles in the living room. I find my tree so magical for its beauty and for the ornaments laden with memories. There…
It is spectacularly beautiful outside. A wintry mix early this morning has left a coat of ice on everything, which the sun is now illuminating, leaving me stunned by the beauty around me. It’s a snow day here in my part of New England. Of course, I hope it…
I have started fundraising for my next service dog so Wendy, my current service dog, can retire. It has not been easy, but I know it’s time. Wendy is always happy to help me, mainly by picking up things I drop, and she is always spot-on in public — except…
As part of the field work required for my master’s degree in social work, I worked with someone who had a traumatic brain injury, trying to help him move away from destructive behaviors. I always thought part of the problem was that he was in his late 30s and living…
This is the time of year when I ask my husband, Dave, what he wants for Christmas. He usually replies: “I don’t know, I haven’t thought about it.” He repeats it year after year, especially as Christmas or his birthday draws near. So, mostly, I select gifts without his guidance.
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