Elizabeth Hamilton

Hartford

Editor at The CT Mirror

Editor of the CT Mirror. Poet wannabe. Still go a little weak in the knees over a beautifully constructed sentence.

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Articles

On our FA journey, everyone has something to offer

1 week ago | friedreichsataxianews.com | Elizabeth Hamilton

As the lecturer’s voice echoed in the large hall, I sat nestled between friends. This was a lifetime before my 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA), and before I was gearing up for a life of service, first as a volunteer and then as a social worker. I was there to learn how best to engage future clients, and my notes were filling up the page. A story was shared about a woman who’d lost everything in a flood.
With FA, I'm constantly asking what went right and what I learned

1 month ago | friedreichsataxianews.com | Kendall Harvey |Marisa Wexler |Elizabeth Hamilton

As I’ve often discussed, there is no handbook for living with a progressively degenerative condition like Friedreich’s ataxia (FA). However, there are good general rules of thumb that everyone can follow, such as safety first; if at first you don’t succeed, try and try again; tomorrow is a new day; and so on. Yet, in life with FA, the risk of failure can be costly.
The power of being present on this journey with FA

1 month ago | friedreichsataxianews.com | Elizabeth Hamilton

I both heard and felt the rumbling noise as the elevator jerked to a halt and I was plunged into darkness. Immediately I knew my error and was kicking myself. We were in the middle of a huge storm, and I’d known that a power outage was possible. Yet I still jumped on the elevator without a second thought. This tale not only sounds like the plot of a high-adrenaline movie, but it felt like one at the time.
Magical thinking was ever-present in my early days with FA

1 month ago | friedreichsataxianews.com | Jean Ker Walsh |Matthew Lafleur |Elizabeth Hamilton |Kendall Harvey

Before my neurology appointments, I practiced tasks like touching my forefinger to my thumb, forming the “O” of the “OK” symbol. Part of my exam was, and still is, measuring how quickly I can do that repeatedly. I was determined to excel in my neurological exam. Now, I look back and laugh at my younger self. What was I thinking? I’m pretty sure I just wanted good news, and my way of trying to control that was to make those Os as quickly as I did the year before.
Sometimes I feel powerless when dealing with Friedreich’s ataxia

2 months ago | friedreichsataxianews.com | Jean Ker Walsh |Matthew Lafleur |Kendall Harvey |Elizabeth Hamilton

Walking my service dog, Wendy, in the winter poses quite a challenge. When I take her out, she’s clipped to my wheelchair, which I use because of my Friedreich’s ataxia (FA). Then she jogs alongside me. Like most dogs, Wendy is thrilled when she knows she’s going out. Wiggling her backside enthusiastically, she sidles up next to me so I can attach her leash. It’s enjoyable for both of us. I love being outside exploring my neighborhood, and there are so many scents for Wendy to smell.
Being called a warrior when I feel like anything but

2 months ago | friedreichsataxianews.com | Kendall Harvey |Marisa Wexler |Jean Ker Walsh |Elizabeth Hamilton

There’s a lot that comes with the territory of having a visible disability, especially if you choose to live your life out loud rather than hide. I never imagined I’d have to make that choice until I was diagnosed with Friedreich’s ataxia (FA) in 2013. Back then, I understood the basics of the progressively degenerative neurological condition, but I now realize that I had no real idea what was in store for me.
From fumbles to fortitude: Learning to quiet my inner critic

2 months ago | friedreichsataxianews.com | Matthew Lafleur |Katherine Poinsatte |Elizabeth Hamilton |Jean Ker Walsh

Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than inconvenient. Put simply, these challenges make every routine task more demanding. Despite these hurdles, I strive to maintain a sense of normalcy in my personal and professional life.
How creating a strategic plan is helping me navigate life with FA

2 months ago | friedreichsataxianews.com | Elizabeth Hamilton |Steve Bryson |Kendall Harvey

I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment. As the parent of a 12-year-old who was diagnosed at age 8 with Friedreich’s ataxia (FA), I know that life will sometimes pull me off course. But this feeling was more than that. I’d lost sight of the bigger picture of my life and needed a plan to ground myself.
Facing the inevitable in life with FA, despite my best efforts

2 months ago | friedreichsataxianews.com | Kendall Harvey |Katherine Poinsatte |Jean Ker Walsh |Elizabeth Hamilton

At the beginning of my journey with Friedreich’s ataxia (FA), when my balance, coordination, and associated abilities were starting to decline, I felt like everyone was watching me. Because I’d decided to be vulnerable and openly share my journey with the condition, I felt that people expected to see FA when they looked at me. However, in the early days of my public walk with FA — no pun intended — the disease wasn’t easy to spot if you didn’t know what to look for.
Making a stand with the many Rare Disease Day advocates

2 months ago | friedreichsataxianews.com | Jean Ker Walsh |Hawken Miller |Elizabeth Hamilton

Like many of us who get diagnosed with a scary illness, the question of “why me?” ran circles around my head. I chased that voice hard, wondering what I did to deserve Friedreich’s ataxia (FA). The answer I came to and always give that voice in my head is “You didn’t do anything. Disease is simply a part of life.”Now, I’ve added another simple twist: While your disease may not have happened for a reason, it can provide you with one.