Tag: chronic illness

Let’s take it one step at a time this week


A good friend is doing something big this week. To honor their privacy I can’t reveal the specifics but my friend is taking a long-awaited, positive risk. A risk they have thought about and talked about for a long, long time. My good friend is nervous. And rightly so. They’re a little older now. A […]

Health Update: 8 Weeks of VRT


Thursday February 28th, concluded my 8th week of Vestibular Rehabilitation Therapy (VRT). It was also Rare Disease Awareness Day— a day to raise awareness for rare diseases all over the world. 8 weeks ago, I skeptically began VRT attempting to improve balance, coordination, and overall movement. Without surgery, could my brain really be fixed? To […]

How to Cross a Threshold


The following post, “How to Cross a Threshold” was originally published on March 18, 2018. This piece was also published in “Generations”, a quarterly publication that explores ataxia research and promotes ataxia awareness.     If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of […]

Today is a great day to start over


~This is a new post~ The other day I saw a young couple, a man and a woman, sitting on a porch step, leaning on one another and sharing a bottle of beer. Their were smiling. They sat in silence, just a couple of kids, as the evening sun tossed shadows across the front lawn, […]

Why Problems are Special Opportunities


Four weeks into VRT (Vestibular Rehabilitation Therapy) and I’m coming along– one step at a time. My physical therapist and I agreed that I’m at 75%. Meaning another 25% and we both feel I’ll be able to start to run again. In a weird, frustrating, and fascinating way devoting my summer to learning how to […]

We Weren’t Meant to Wallow


 ~To a friend who is having a bad day.  Today was bad. Something made you angry or frustrated or upset.  Something made you feel lost or confused or worried. Today, something got the best of you. And when it did– maybe you tightened your jaw. Maybe you balled your fist and seethed. Maybe you slammed […]

Happy Birthday Mom


Today is my mom’s birthday. And because it falls on the edge of the holiday season, her birthday is often less of a spectacle, hastily remembered, and often underappreciated. Which, in a way I guess, makes sense. As a child, like most children, I took mom for granted. I just assumed she would always be […]

A Therapy Story


If you’ve been keeping up this blog you probably know I started Vestibular Rehabilitation Therapy a few weeks ago. VRT is a form of therapy that uses exercise to improve gaze (eye movement) and gait (walking/movement).  My vestibular disorders, which are a result of cerebellar atrophy, vertigo (dizziness) and nystagmus ( involuntary rapid eye movement) […]

Wish me luck…


On Friday, December 28th I begin vestibular rehabilatation therapy again. My first experience with VRT was in the winter of 2014 at the St. Lawrence Rehabilitation Center. The physical goals this time are: to improve balance to improve motor skills strengthen core muscles strengthen legs prepare my body to run again The emotional goals are: […]

Happy Holidays from Write on Fight on!


Happy Holidays from Write on Fight on! I woke up on Christmas Eve morning at 10 am, which is absurdly late for me. Even on weekends I’m out of bed by 7 am. The reason? My children are getting an XBox for Christmas and I was up until 2:30 am installing updates, setting up parental […]