Hello and Welcome! My name is Cheryl Schiltz and I’ve been majoring in the experience of disability since 1997 when an adverse reaction to an antibiotic destroyed my vestibular system. I lost my sense of balance and any sense of knowing where I was in space, forcing me literally to re-learn how to walk and introducing me to disability. Along with the loss of balance came a visual disturbance called oscillopsia, my vision bounces and blurs with any movement. My experience was further compounded in 2010 when it was discovered that I had a brain aneurysm that required surgery to, as I like to put it, “clip the bubble”. Then in the summer of 2013 I began experiencing seizures caused by lesions that developed from my brain surgery.
Related to my loss of balance I took part in ground breaking sensory substitution research at the University of Wisconsin-Madison pioneered by world-renowned and esteemed doctor and scientist, Dr. Paul Bach-y-Rita. I became “Subject Zero” as well as co-investigator in this amazing research. It was this experience that set the stage for my how my life has changed.
I’ve been fortunate to have my experiences featured in several scientific publications as well as in featured articles in The New York Times, The Washington Post, Discover Magazine, New Scientist Magazine, National Geographic, PBS, On Wisconsin, and Wisconsin Public Television. My story has also been featured in two books, “Balance – In Search of the Lost Sense” by Scott McCredie and the international best-selling book, “The Brain that Changes Itself” by Dr. Norman Doidge. I was also featured in a Canadian Broadcast Company documentary of Dr. Doidge’s book.
I earned my BS in Rehabilitation Psychology from the University of Wisconsin-Madison. My “after disability” experience includes working and volunteering in vocational rehabilitation, youth transition, independent living, and disability advocacy and support. I also volunteer as a Board of Director for two separate disability related non-profit organizations.
With this project my wish is to share my experiences, journey and insights of disability thus bringing to life, “Subject Zero: A Woman’s Journey into Silencing the Noise of Disability“.
I live in Madison, Wisconsin where I enjoy my family, photography, writing, public speaking, and working to make a difference in the lives of people with and without disabilities.
Thank you for sharing this journey with me.
Subject Zero 
Cheryl, I am sighing up for your blog. I lost track of it somehow.i am very interested in retraIning my brain after 5+ years after suffering a stroke in 2009. Thank you Cheryl
(Are you still attending St. Stephen’s ? I don’t remember seeing you. we are always at 10 a.m. service except for last Sunday. I have flu right now.)
Hi Cheryl. Thank you so much for following my blog! There are many ways to retrain one’s brain after trauma, exercises that PT doesn’t offer. Another is facing the trauma of the change in our body and our thought. The hard part is busting through it.
I never thought that my experiences fell into the realm of trauma. However, looking back it indeed did. I carry it with me still, only I’m aware of it now and take measures to understand what’s going on so I can replace my thoughts with action to go beyond it. You probably know how that is, we put on a happy face, we tell everyone we’re okay, we’re managing it. We might even refuse help from others or fell helpless when they do. We keep moving on in spite of it, ignoring how we really feel inside. One of my goals in writing about my story is to face what I’ve been through, to let it go. PT is great but I think they fail to see the person, PT should be on the persons terms as it fits into their lives and goals. I’d be happy to chat over coffee sometime and share some of tools I use.
I’ve not been to St. Stephens for awhile. Not really sure why, at first it was the break up from Paul that came out of the blue. Then it was seeing him with someone else so soon after I lost momentum in a lot ways, however, I’m very close to closing up that hole.
I know that I would be welcomed back with great joy and that would feel wonderful. I’m just taking my time.
Hope you have recovered from the flu! It’s bad this year.
Take care and many blessings to you. Cheryl
Hi Cheryl, my father in law had a stroke 23 years ago. He recovered but he is declining at his 90 years of age. It is very painful to see him loosing all his physical gains after his stroke. He is very sedentary and not having any neuro-stimulation. My question is where can I get a device like the one you used. We live in Newcastle, NSW Australia.
Hello Amanda,
So sorry to hear about the struggles your father-in-law is facing. The BrainPort is available through Wicab’s partners in Canada, here’s a link to connect with them. https://www.wicab.com/brainport-balance-plus
I sincerely hope that things work out for your father-in-law.
Cheryl Schiltz