Blog (13 wpm)
Turning thoughts on Living with FA into print 13 words per minute
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...
End-of-Year Vibes: Reflecting on Burnout and New Beginnings
It's the end of the year--a time of reflection. I kind of hate that. Why? While it's a good thing to remember all I have to be thankful for, it's also a time when I think about things I did not do or could’ve done better. This last month in particular, I haven’t done much. Actually, the last two months have probably been unproductive. Maybe that's true. But maybe only if I look through it from...
Don’t give up hope
The last week, I started thinking about the future. Do we know what is going to happen? We speculate, preparing for the worst--hoping we will be pleasantly surprised when it’s “not that bad.” But what if we thought that in the big picture, this election had to happen in order for something better to come about? I don’t know exactly what that is. Again, we can speculate. Maybe the election means...
Disability Pride, I have it, but what’s next?
Today is the anniversary of the signing of the Americans with disabilities act (ADA). It's a monumental day for people with disabilities. My disability became official one month after the ADA passage. Naively, I thought the ADA would protect me from discrimination and prejudice. . .If only it were that simple. Don't get me wrong; I have a deep appreciation for living with a disability with the...
Celebrating Loss
I feel a bit cringy about all of the positive news regarding my memoir. Am I bragging? Showing off? Much like my post regarding authenticity, I want to acknowledge that there have been disappointments too along the way. Here are some examples: My Unexpected Life was named a Notable 100 Book in the 2023 Shelf Unbound Best Indie Book Competition but didn’t make the Top 10 in the BookLife Prize...
April Events, New Review and Podcast
Happy (almost) May! This year is flying by! In the next few days, I hope to add some video details from the Author of the Month event and pictures from the LA Times Festival of Books! Both events were fantastic! More later. . . For now, I wanted to share a new review that came out from The Chrysalis BREW Project. https://bit.ly/3wcANeP I was also a guest on Set Lusting Bruce: The Bruce...
An exciting April—events and podcasts
Happy Spring! I have been waiting for April for a long time. I have been chosen as the Author of the Month at San Diego Central Library! The event is free! Register here. I will also be at the Los Angeles Times Festival of Books at the University of Southern California, April 20-21, 2024! I’ll be there along with many other Acorn—my publisher—authors! Admission to the country’s largest festival...
Listen to this amazing discussion with Sarah about MUL and living with disability!!!
This podcast just came out today! https://www.introducingmepodcast.com/e/jennifer-disabilities-aren-t-disappointments/
