A week ago, I woke up early on a slightly cloudy, humid Sunday morning. I had butterflies in my stomach as my husband, Dave, and I drove 40 minutes to a fundraiser for my patient organization. I have Friedreich’s ataxia (FA), a disabling and life-threatening rare disease. Dave has…
Defining Yourself - a column by Jean Walsh
This morning I was practicing my pre-getting-out-of-bed routine. I take a pill, do breathing exercises, and meditate for about 10 minutes. I mostly follow this routine, but not always. It’s my way of trying to start the day with a clear mind, and it almost always leads to a better…
About 12 years ago, I went dog mushing with my local disabled sports organization, Northeast Passage. It was a once-in-a-lifetime experience. Those of us who participated have various disabilities, and we got to learn a bit about mushing a team of dogs. Then we got to try it…
I am a work in progress, just like everyone else in this world, so I need to give myself grace. The meaning of grace is essential. Several of my columns, including the previous one, have drawn the conclusion that I should grant myself grace. I wanted to further…
I have been attending a leadership training for people with rare diseases. The training is fueled by fierce moms trying to pave the way for their children to live in a better world full of cures. I am envious of those kids. As a preface, I must say that I…
Last week, I took a slow-motion fall. While transferring from bed to my wheelchair, I tried to reach for something — so I could be quicker — and landed on the floor. I am no longer able to transfer from the floor to my wheelchair. Wendy, my service dog, can…
I’m a regular at my gym. Because of transportation issues — a story for another column — I didn’t get there for about three months. Last week was my first week back. So I had to mentally prepare myself for the questions coming my way: “I haven’t seen you in…
I was transported to a joyful memory while listening to the radio a few days ago. I’m in the home where I grew up, and it’s sunny and cheerful. My sisters, Lisa and Tricia, and I are dancing around the living room, yelling first “I will get by, I will…
About 11 years ago, I visited Voyager Therapeutics. The company was, and still is, working to develop a gene therapy for my disease, Friedreich’s ataxia (FA). My dad joined me on that visit, and we were overwhelmed by the care, respect, and kind curiosity we were shown. It was…
As you read this, I’ll be on my way home to Massachusetts from a family wedding in Georgia. Right now, I’m getting excited about seeing family I haven’t seen in a while. Because I have Friedreich’s ataxia, I use a wheelchair and have a service dog. I hate the…
Recent Posts