Blog (13 wpm)
Turning thoughts on Living with FA into print 13 words per minute
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...
My Will, My Voice: Donating Organs for FA Research and Beyond
I was 22 when I made my first official will. Though I didn’t fully believe I would die soon, something compelled me to make the decision. It’s not like I was rich or had children, but I wanted to be—responsible? Proactive? Realistic? Adult?— just in case Friedreich’s ataxia (FA), had different plans for me. I didn't think then of donating organs for FA research, or about what I should do with...
Lessons from Living with Friedreich’s Ataxia: The Messy Journey to Love
Okay, so Valentine’s Day has come and gone, and I’ve been thinking about love—and my experiences navigating my path to finding it. To say my relationship with love has been complicated would be an understatement, especially when I throw in the curveball of being diagnosed with Friedreich’s ataxia at 17. Like many living with Friedreich’s ataxia, I discovered I might not live long. Letting My...
Kicking Off the New Year with Exciting News about My Unexpected Life!
Hey everyone! As we jump into 2025, I’m super excited to share some awesome news about my memoir, *My Unexpected Life*! This new year has already blessed me with a bunch of recognition and it feels incredible. Here’s a quick rundown of what’s been happening! #### Difference Maker Award by Store with a Heart First up, I’m thrilled to announce that *My Unexpected Life* snagged the Difference Maker...
