In November
of 1995 I had been living in Atlanta for about a
year, having moved there from NJ after graduating
college. On the 5th of that month, I fell
from a building and broke my 5th and 6th
cervical vertebra. Fortunately, I was a few blocks
from Shepherd Spinal Center, one of the world’s
finest spinal cord injury hospitals. From the onset,
the Dr’s didn’t give much hope of recovery. A C5/6
spinal cord injury meant I would have use of biceps,
but no triceps, hand, finger, or pectoral function.
My lower body would be paralyzed which included
bowel, bladder and sexual function. It was a grim
diagnosis.
The first
few weeks following my accident were a struggle. I
had pneumonia in both lungs, was on a respirator and
was paralyzed from my shoulders down. Fortunately, I
don’t recall much of the first few weeks because I
was heavily medicated. My family went through hell
because they had to watch me struggle, but could do
nothing to help. My four older sisters and parents
were by my side from day one, along with cousin
Kevin, who I had been living with at the time of my
accident. Their support, along with many friends,
carried me through.
A few weeks
after my accident I began to regain a small amount
of feeling and sensation in my left toe, hands and
fingers. Also, muscles in my hands and left small
toe seemed to be awakening. This was very
encouraging! About the third week I was off the
respirator, stable, and ready to begin learning to
live with my new body. My first task was attempting
to sit in a wheelchair. Unable to move, a hydraulic
lift was used to transfer me to the wheelchair. This
was the first time I sat up in three weeks so my
blood pressure plummeted, and I nearly blacked out.
I was placed back in bed and my BP stabilized. (SCI
diminishes circulation, and causes low blood
pressure). In the coming days I was able to sit a
little longer each time and was then trained to use
a battery-powered wheelchair. It had a joystick that
controlled propulsion, and my hands/arms barely
worked so it was quite the adventure! I was now able
to venture out of my room and begin physical and
occupational therapy.
My first
physical therapy session consisted of lying on a
mat, attempting to roll side to side. Sounds pretty
easy, but was nearimpossible, gravity
is no friend of paralysis! I was improving daily,
and continued to have more sensation and movement in
my upper and lower body. The fact that I was
continually improving and getting stronger helped to
keep my spirits up. Many people that are spinal cord
injured don’t get any recovery of function.
In addition
to physical therapy, I also attended occupational
therapy (OT) every day. Occupational therapists
basically train to dress, perform hygiene,
self-catheterization bowel care, cooking, cleaning,
and down the road, to re-enter the workforce.
Everything had to be relearned with the limitations
of my new body. A few of my first OT goals were to
put on a shirt, feed myself and brush my teeth.
Because my hands/fingers didn’t work, I used
adaptive equipment to hold things such as forks,
spoons and a toothbrush.
I continued
to improve slightly every day, regaining movement in
my legs, hands and fingers. In January, my insurance
company would no longer pay for inpatient hospital
care, and agreed I could continue as an outpatient.
Mom, Kevin and I moved to an apartment around the
corner. Living outside of the hospital was
challenging but I was fine with Kevin and Mom. It
was nice eating home cooked meals!
At this
point, I had a little movement in my legs, hands and
fingers.
I also had
surface burning on my butt. When bad, it felt like
sitting on a hot grill. The Drs said this was
neuropathic pain, common to 40% of those with SCI.
I was unable
to urinate and had to be catheterized every 4 hour.
I was also unable to do #2 and had to do a “bowel
program”.
Outpatient
therapy was a little more intense and I continued to
progress.
I was
strengthening leg muscles with a weight machine,
using electrical stimulation to exercise my fingers,
taking steps in the pool and using a standing frame.
My insurance would max out in March, so plans were
underway to move home to NJ and continue outpatient
therapy at Kessler Institute for Rehabilitation.
Disability insurance would cover medical needs.
On my last
few sessions of physical therapy at Shepherd I was
able to take steps in the parallel bars using leg
braces. I was still making progress and looked
forward to going home and continuing therapy at
Kessler.
I learned a
whole lot in the four months following my accident.
There is nothing more important than having a
supportive family and friends. I can’t imagine going
through this without them.
Before
arriving home in NJ, a bunch of friends build a ramp
and new entrance to my parent’s house. With that
done, we could move home.
I started
outpatient therapy at Kessler a few weeks after my
return. Soon, I was walking in the parallel bars
while wearing leg braces. Being upright was nice and
I continued to make progress. I was able to walk
about one hundred yards with a walker and one brace.
I continued to walk at Kessler, and also at home. I
attended Kessler for about a year, until my progress
came to a halt. The damage to my spinal cord was
such that I was unable to build enough leg strength
to walk without a brace. I was discharged from
Kessler in 1998, but continued to exercise at home
to keep in shape.
In 2001 I
returned to working with children, on a part time
basis as a Youth and Teen Center Coordinator at a
YMCA. The 6 year vacation was nice and all, but I
had to move forward and do something. Getting out of
the house and working was a big step, thinking back.
Up until then I hadn’t consistently been out in
public if it was in a family setting or rehab
hospital. In a sense, it was a reintegration into
society.
In 2002 a
friend of a friend informed me of a yearly
fundraising dinner held by The Central Jersey Spinal
Cord Association and my family and I decided to go.
It was a huge event, attended by 300+ people. The
organization was founded in 1987 by a family who’s
son Kevin suffered a SCI. Kevin and his family were
wonderful people and we have attended every year
since.
At the
dinner, we were seated with the keynote speaker, Dr.
Wise Young, of The W.M. Keck Center of Collaborative
Neuroscience, The Spinal Cord Injury Project, at
Rutgers University. Dr. Young spoke about SCI
Research and the work being conducted at his lab to
cure paralysis. This was very exciting because up
until then, I hadn’t heard anything about SCI
Research. I had a chance to talk with Dr. Young and
was very impressed. He told me of a website he
started for the SCI Community, CareCure, and we kept
in touch through that. My family and I left with a
renewed sense of spirit because of Kevin’s uplifting
speech, and Dr. Young’s research.
Each time we
attended Kevin’s fundraiser we felt more of a need
to do something as a family to contribute to SCI
Research. In 2005 we founded The Jim Bennett
Foundation For SCI Research and held our first
fundraiser, at which Dr. Young was our Keynote
Speaker. In 2008, Dr Young hired me to help
establish the first U.S. Clinical Trial Network for
SCI, The Spinal Cord Injury Network USA (SCINetUSA).
Part of my responsibility was to serve on the
SCINetUSA Protocol Committee. We are organizing, and
hope to hold the next SCINetUSA Protocol Committee
meeting at The Shepherd Center, talk about coming
full circle!
I am very
blessed to be where I am today and wouldn’t be here
without the support I have received from many, many
people. My journey has been easy because I am able
to live without depending on the help of others.
This is not the case for many of the 1.3 million
U.S. citizens living with spinal cord injury. A lot
of these individuals are dependent on machines to
breathe, and others to care for their every need.
Many have to deal with debilitating pain every
second of the day. Lives and families are destroyed
by spinal cord injury. Researchers have proven that
the spinal cord can regenerate and therapies are
ready to be tested in clinical trials. Please help
to fund
SCINetUSA Clinical Trials!
