October 8, 2015
Testimony
from Janet Johnson Schliff
Respectfully submitted to
the Assembly Standing Committees on Health and Mental Health and the Assembly
Task Force on People with Disabilities, in the city of Albany, NY.
Dear Committee Members:
MY
BRAIN INJURY STORY
I was a
special education teacher for 25 years. I began my career for the Pine Plains
Central School District in New York State. Most of my career I worked for Ulster
County BOCES. I ended my teaching career working for the Rondout Valley Central
School District. I found out in 2009 that I taught for 20 of those 25 years
with an undiagnosed brain tumor.
I had retired early (in
my late 40s in 2007) because of an inability to function appropriately anymore.
I had mysophobia (fear of germs) and I couldn’t even hold a piece of chalk in
my classroom. I had headaches that were debilitating, but the doctors blamed
them on the medications I was on for my fear of germs. It turns out the
mysophobia was caused by a latent brain tumor!
As
women, we are often “measured” by our ability to run a household – raising
kids, food prep, housekeeping, our job, etc. The only thing I got right on that
“list” was my job. I put my entire heart and soul into it. I’ve never had
children; I ate already-prepared foods from the microwave and had others clean
my house. But what I did do, teaching, I was excellent at! I won numerous
awards because of it. The award that I am most proud of is the Mid-Hudson
School Study Council’s Excellence Award that I received in October 1992. The
New York State Commissioner of Education put a medal around my neck at a
special ceremony held at the Hotel Thayer at West Point. I went from that level
of excellence down to a fear of touching my classroom’s doorknobs, phone,
chalk, etc. It was excruciating, but then…it all made sense when a neurologist
told me I had a massive brain tumor, the size of an orange, and I had to be
rushed to the NYU Medical Center in New York City for brain surgery.
So,
from July 2009 (when I survived several hours of brain surgery) to spring of
2010, I was “high on life” (or euphoria, as some of my friends dubbed it). I
was thankful that the mysophobia was over. But, then, everything changed! I was
furious at the doctors who didn’t get this correctly diagnosed. I was hurt that
I could no longer teach, since I have permanent brain damage to my temporal and
frontal lobes. (See attachment from my neurologist.)
I am
now labeled ABI (Acquired Brain Injury) and have both severe behavior and
memory issues. I can cite many examples of things I’ve lost or forgotten since
my brain surgery. Some of these examples are very embarrassing when you’re only
in your early 50s. My “mistakes” are very obvious to others. And – I also have
many examples of the behavior issues I now face and have to deal with
throughout EVERY single day. I am hyper-vigilant, impulsive, overly sensitive,
overly reactive, just to name a few….
Because the only thing I did well at
(teaching) was now over for me, I lashed out to anyone in my path (at
restaurants, in stores, even at church)! I became aggressive, verbally abusive
and so on. The behaviors I once helped my students control, I now had to do for
myself 24/7. I HAD to get a handle on my “crazy” behavior before I was
arrested.
So – I learned about many alternative
therapies to help me calm down. I began Neurofeedback, Craniosacral Therapy,
and Reflexology. All three of them helped me enormously! After approximately 4
years of these appointments, I was able to pull myself together enough to be
able to be invited to Assemblyman Kevin Cahill’s office to speak about brain
injury and thus, other invitations to meet with “mucky-mucks” (what I
affectionately refer to politicians as since I can’t remember almost everyone’s
correct title) up at our state’s capital. Just a couple of years ago, I would
NEVER have been able to sustain the stress from all of it had it not been for
those life-changing therapies!
The problem is, none of them (and other
therapies I’ve heard wonderful reports about from other brain-injured people)
are covered by health insurance. I used up most of my savings account to cover
these therapies. I had a savings account because I was a teacher for 25 years.
Many people with brain injury are not as financially secure as I once was. But,
now, I only have approximately $3000 left after all of the years I wrote checks
to the various therapists. That money spent was one of the reasons I’m calmer
now, and thus have not been erratic, or verbally abusive like I once began to
be before I started these holistic therapies. I knew enough to get help before
I landed in jail.
I firmly believe these therapies should
be tested to help prove that they can help others too. I know that will help
our society because a brain injury happens every 13 seconds. [Since this 2015 writing, it has accelerated
to every 10 seconds!]
I realize that this is a huge
undertaking. I know change is hard and slow. Just as massage therapy can be
covered by health insurances, I think the work to get other therapies approved
will be worth it for the people who will greatly benefit from a calming effect
these therapies provide.
I know firsthand that people with brain
injuries deserve to have the best treatments to be able to adjust to their “new
life.” I know that I was invited to possibly speak at this hearing because of
their success with me. Please consider whatever needs to be done so
brain-injured people can become more included in our society.
We, the brain-injured, may not be able
to do what we once could, but may be able to do something good after getting
the help we deserve. I will never be a teacher again. I hope I can help others
in a new way…. Thank you very much!
Respectfully,
Janet Johnson Schliff
I (Douglas Winslow Cooper) have been excerpting, weekly, material from this almost-final version of the fine book by Janet Johnson Schliff, M.S. Ed., which she wrote over a three-year period with some coaching and editing help from me, through my business, Write Your Book with Me.
Her memoir is now available in paperback and ebook formats from Outskirts Press and amazon.com:
###
BOOK TALKS AND SIGNINGS
More talks are being planned for the spring of 2019… she can be contacted at 845.336.7506 (home) or 845.399.1500 (cell).
Janet Johnson Schliff spoke at the Oblong Books Bookstore in Rhinebeck, NY, on Tuesday, February 6 at 6 p.m.
Janet was on WKNY Radio 1490 in Kingston, NY, on Thursday, March 1 at 9:10 a.m.
Janet spoke at Barnes & Noble in Kingston, NY, on Saturday, March 3 at 1 p.m.
Janet spoke at the Starr Library in Rhinebeck, NY, on March 6 at 7 p.m.
Janet spoke at the Golden Notebook Bookstore in Woodstock, NY, on March 17 at 2 p.m.
Janet spoke at the Morton Library in Rhinecliff, NY, on March 28 at 6:30 p.m.
Janet spoke at RCAL in Kingston, NY, on April 3 at 4 p.m. [They gave her an impromptu book-launch party.]
Janet spoke at the Parkinson's Support Group at the Starr Library in Rhinebeck, NY, on April 4 at 2:30 p.m.
Janet spoke at the Stone Ridge Library in Stone Ridge, NY, on April 27 at 5:30 p.m.
Janet spoke at the Hurley Library in Hurley, NY, on May 4 at 6 p.m.
Janet spoke at the Kingston Library in Kingston, NY, on May 9 at 6 p.m.
Janet spoke at the Staatsburg Library in Staatsburg, NY, on May 14 at 7 p.m.
Janet spoke at the Clinton Community Library in Rhinebeck, NY, on May 31 at 6:30 p.m.
Janet spoke at the Mountain Top Library in Tannersville, NY, on June 9 at noon.
Janet spoke at the Gardiner Library in Gardiner, NY, on June 11 at 7 p.m.
Janet spoke at the Marbletown Community Center in Stone Ridge, NY, on June 20 at 6 p.m.
Janet was interviewed on radio station WTBQ-FM (93.5) on June 29 at 12 p.m.
Janet spoke at the Esopus Library in Port Ewen, NY, on July 13 at 7 p.m.
Janet spoke at the Pine Plains Library in Pine Plains, NY, on July 20 at 6 p.m.
Janet spoke at the Ulster Library in Kingston, NY, on July 23 at 5:30 p.m.
Janet spoke at the Northern Dutchess Bible Church in Red Hook, NY, on August 11 at 1 p.m.
Janet spoke at a writers' group in Rosendale, NY, on August 30 at 2 p.m.
Janet spoke at the Inquiring Minds Bookstore in New Paltz, NY, on September 6 at 7 p.m.
Janet spoke at the Adriance Library in Poughkeepsie, NY, on September 15 at 2:30 p.m.
Janet was interviewed on radio station WRIP-FM (97.9) on September 21 at 8 a.m.
Janet again spoke at the Mountain Top Library in Tannersville, NY, on September 22 at noon.
Janet spoke at the Enchanted Cafe in Red Hook, NY, on September 28 at 7 p.m.
Janet spoke at the Hyde Park Library in Hyde Park, NY, on October 4 at 7 p.m.
Janet participated in an Author Weekend at the Barnes & Noble in Poughkeepsie, NY, on October 14 from 11 a.m. to 3 p.m.
Janet spoke at the Tivoli Library in Tivoli, NY, on October 22 at 5:30 p.m.
Janet’s interview for the TV program Wake Up with Marci on the You Too America Channel aired on Monday, November 5, and Friday, November 9. It can now be found on the Internet.
Janet spoke at the Germantown Library in Germantown, NY, on November 7 at 6:00 p.m.
Janet participated in the Red Hook Middle School's College and Career Cafe in Red Hook, NY, on December 19 at 10:30 a.m.
Janet will speak at the Poughkeepsie Brain Injury Support Group at the Poughkeepsie Galleria Mall in Poughkeepsie, NY, on Saturday, February 23 at noon.
Janet will speak at the Stanford Free Library in Stanfordville, NY, on Saturday, March 9 at 10:00 a.m.
Janet will speak at the Howland Library in Beacon, NY, on Wednesday, March 20 at 1:00 p.m.
Janet will speak at the West Hurley Library in West Hurley, NY, on Saturday, March 23 at 1:00 p.m.
Janet will speak at the East Fishkill Library in Hopewell Junction, NY, on Monday, March 25 at 6:30 p.m.
Janet will speak at the Grinnell Library in Wappingers Falls, NY, on Saturday, March 30 at 10:30 a.m.
Janet will speak at the Dover Plains Library in Wingdale, NY, on Friday, April 5 at 6:00 p.m.
Janet will participate in an Author Talk at the Saugerties Library in Saugerties, NY, on Saturday, April 13 at 1:00 p.m.
Janet will speak at the Red Hook Community Center in Red Hook, NY, on Wednesday, April 24 at 5:00 p.m.
Janet will speak at St. Timothy's Church in Hyde Park, NY, on Sunday, May 5 at 11:00 a.m.
Janet will speak at the Moffat Library in Washingtonville, NY, on Saturday, May 11 at 1:00 p.m.
Janet will speak at the Beekman Library in Hopewell Junction, NY, on Saturday, May 18 at 10:30 a.m.
More talks are being planned for 2019… contact her at 845.336.7506 (h) or 845.399.1500 (c).
More signings will be coming up. A fine feature about Janet by John DeSantos [845 LIFE] appeared in the Middletown Times Herald-Record on Monday, March 12, as part of Brain Injury Awareness Month. An article about her book was just published in the May 2018 Living Rhinebeck Magazine. An article about her book appeared in the May 14 Daily Freeman of Kingston, NY. and another in the Family Life section of the Poughkeepsie Journal on June 8th. The Millerton News published an article on Thursday, August 2, about her talk at the Pine Plains Library.
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