Defining Yourself - a column by Jean Walsh

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.

Each year, the daughter of one of my friends hosts an annual “Friendsgiving” event the day after Thanksgiving. I’ve never gone because I haven’t met her daughter, but my friend assures me it’s really fun. I love the idea because it reminds me how intentional people must be to build…

While walking with my service dog, Wendy, I reflected on a question that’s always with me: Who am I? Even at 63, with more of my life behind me than ahead, this question still arises. I am many things: daughter, sister, wife, aunt, friend, dog mom, rare disease patient, rare…

I spent most of my day last Saturday picking things up, or rather, having my service dog, Wendy, pick things up. Exploding head emoji. Even though sweet Wendy always wags her tail and is happy to pick up an object when we fail to transfer it from her to me,…