Blog (13 wpm)
Turning thoughts on Living with FA into print 13 words per minute
Disability Pride and the Right to Be Conflicted
Trigger warning: This section discusses passive suicidal thoughts, assisted dying, and caregiving fears. If this material could be upsetting, please skip or seek support. If you are in immediate danger, contact emergency services now. U.S. Call or text 988 (Suicide & Crisis Lifeline); chat at 988lifeline.org. Crisis Text Line: text HOME to 741741. The Trevor Project (LGBTQ+ youth):...
Stop praising people for being in my life.
It isn't actually a compliment to them. It’s an insult to me. The connotation is that I am a burden and unworthy. It suggests that my friendship, my love, and my companionship are so difficult to handle that anyone who "deigns" to be connected to me deserves a gold medal for their patience. I thought I had grown immune to such comments, but last year I had an encounter that reminded me of how...
From “Cheating” to “Equalizing”: My Shifting Perspective on AI
I didn't use AI when I wrote My Unexpected Life. Using AI would have been an easier route than typing, which is a slow and often frustrating experience. Because of Friedreich’s ataxia (FA), fine motor skills are not my thing. So handwriting is out of the question too. Just over a decade ago when I started compiling my stories, AI was still in its infancy. It wasn’t an option. I even tried...
The struggle I thought was over
For anyone who’s read my book, you know that I don’t shy away from discussing the uncomfortable or embarrassing aspects of life. I’ve been open about my journey with incontinence, and today, I want to share another chapter of that struggle. It’s raw, frustrating, and slightly mortifying, (definitely bordering on TMI), but it’s my truth and something I've been dealing with lately. I know others...
Breaking the Silence: Navigating Book Events as a Disabled Author
It's been almost 2 years now since I've been attending Book events and my recent appearance at the San Diego Book Festival reminded me how frustrating these events can be. Attending book events as an author is supposed to be an exciting opportunity to connect with readers, share your work, and celebrate the written word. But I often feel isolated instead. As a wheelchair user, I’ve noticed a...
Packing Up and Leaving: The Privilege I Don’t Have
Before I begin this post, I want to say that the friends I speak of in this piece did nothing wrong. I am, in no way, upset with them. However, the conversation about leaving the country has left me with a sense of grief. This piece relates to my previous post about crip time and grieving the loss of something. I was five the first time I heard The Beatles speak with their Liverpudlian accents....
What just happened to disabled people?`
I am going to try to write this post without many edits. Mostly because I am in a state of shock right now. The House just passed that big, ugly bill cutting Medicaid. WTF? I guess my value, and that of the millions of other Americans with disabilities, has been made clear--according to Washington lawmakers I guess disabled people don't matter. It doesn't seem like that long ago when I was...
Manifest Future
I started to write a blog post about eugenics and its role in the current state of disability in the US. It got kind of dark. And I realized I don’t want to put something that sinister on my blog.I do believe that much of what has been written in terms of science fiction, or fiction in general, has the potential to come true. So I’m going to write about what I want to happen. I won’t go into...
Exploring Crip Time
“Crip time? What the hell is that?” you might ask. When I first heard the term, I thought it was just a way to explain why I or my disabled friend was always running behind schedule. But it’s more than that. Crip time acknowledges that, for a disabled person, things often take longer. While some disabled people drive, others rely on public transportation, which can easily double, triple, even...
My First Encounter with Accessible Yoga
Here’s another deleted book excerpt, with notes. In this chapter, I discover new things about myself and adapting to life with a disability and living it like I want to. I discovered yoga, something I never thought my body good participate in--another unexpected part of my journey. A New, Intriguing Discovery! January 1996, Milwaukee Ner, my walker, helped me...
Friedreich’s Ataxia is Frustrating. But It’s More Than the Disability
I’ve decided I should share some glimpses into my life that I wrote about in my book, My Unexpected Life: Finding Balance Beyond My Diagnosis, because I think many of you will relate, disabled or not. These everyday struggles show how Friedreich’s ataxia can be frustrating. They also show how it’s not always the disability itself, but how others react to it. Identifying as disabled and finding...
Neurological Changes Due to FA: An Emotional Rollercoaster
One aspect of having Friedreich’s ataxia (FA) that I don’t hear many people speak about is the profound effect emotions have on the body’s capabilities, specifically the body’s ability to speak well because of neurological changes due to FA. For people with FA, emotions seem to amplify everything, turning subtle shifts in mood into chaotic spurts of sound. I wonder if my teenage years were an...
