Blog (13 wpm)
Turning thoughts on Living with FA into print 13 words per minute
I’m back…
I know it’s been a while… what can I say? I’ve been a little distracted by my book. Today’s post may seem a little erratic and all over the place. I haven’t been here in so long that I will try to write this on the spot and publish it right away rather than go through my critique process. Basically, what I’m saying is lower your expectations. Happy 2023! It’s strange to think that I will be 50...
Authenticity
I have been re-reading my posts, and I wonder if I am being truly authentic. I know I am truthful. I am proud to be disabled, annoyed by the views people have of people with disabilities, and have shared some of the frustration that happens with Friedreich’s ataxia. But it feels very surface like I’m not going deep enough. I’m going to explore this topic a bit. Authenticity is a buzzword of...
I’m proud
Recently, I was looking through old pictures trying to find some image to potentially integrate into the cover of my upcoming memoir, My Unexpected Life: Finding Balance Beyond My Diagnosis. I contemplated whether or not to use a photo where I was walking solo, with my walker, or using my wheelchair. I was a little surprised to see that when I used a walker, (21-26), it hardly ever appeared. I...
Disability Pride Month
I was 17 when the Americans with Disabilities Act, (ADA), was signed by President George H. W. Bush in July 1990. While I don’t remember the specific words, images of me standing in our summer sun-lit living room pausing to enjoy the cool breeze coming from the air-conditioning remain. With my eyes closed, I heard the voice of ABC’s World News Tonight. Pots and pans cluttered on the other side...
COVID, part II
continued at the ER... Ten minutes later, I sat in the x-ray room. The middle-aged, male technician’s demeanor was cautious—he did his best to keep his distance. “Can you move your armrests up?” He said. I did so. “Ok. Now lean forward, put your arms up, and can you hold your necklace up in your mouth? I need to get a clear image of your lungs.” Seriously? For anyone who has FA or any...
COVID, part I
I am breaking this post about my COVID/ER experience into two...Be safe!!!!!! Was I going to die? I stared at the word “positive” on the computer screen—the results of my COVID test. My boyfriend Greg, who had started coughing a few days before me, was also positive. The theory was Greg’s adult son had brought it back on a flight four days earlier and passed it on to Greg. I had hoped our cases...
Canine therapy
Well, it happened. One week ago today, I tested positive for COVID-19. After two years plus of caution, I, along with at least three of my other friends, who had been equally vigilant, tested positive this past week. I will post more details about my experience soon. As of today, I am doing very well… But before it all, I wanted to write about the daily joy of my life: my dogs. Wyatt and Ki make...
Disabled, not Disposable
It’s been two years of caution, two years of celebrating my birthday on Zoom, and two years of not going to trivia night at my local brewery. I want to go out, but I can’t because mask mandates are gone. Not having to wear a mask may be a small thing to many, but it’s huge to the sixty-one million Americans living with a disability and me. I was seventeen in 1990 when I was diagnosed with...
Risky Business
Not only do I have Friedreich’s Ataxia, but I also have Multiple Sclerosis (MS). The medication I take for the MS compromises my immunity. According to my neurologist, the drug has not been linked to higher instances of Covid-19. Maybe that knowledge, the fact I have yet to get Covid, and being vaccinated has given me a false sense of security. Sunday, I went to a book signing for my friend’s...
Happy Rare Disease Day
Having Friedreich’s ataxia makes me unique, and I am one of 20,000 people in the world living with FA. Despite the extraordinary context of my life, I dare to call it ordinary. I am crabby in the morning until my first cup of coffee; I shower, get dressed, take my dogs for a walk, procrastinate, complain about my boyfriend, watch the hot show on Netflix, etc. Yes, the way I do things is...
Happy Valentine’s Day
When I was 21, four years after my diagnosis, I worried FA had been a major reason I was perpetually single. Who would want to be with someone who would eventually use a wheelchair and/or die by their mid-20s? I didn’t randomly tell people, “I have a disease that will make walking tough and might kill me at 25.” But it would eventually come out. (By the way, I’m 48 now—that prediction obviously...
A matter of weight
In no way, shape, or form, am I using this platform to promote weight loss. Nor do I want to body-shame anyone. This is my own story and perspective. “Why do you need to lose weight?” My cousin Paula said to me over the phone. “You’ve been a...
