Holly's Story........
 

Hi. My name is Holly Bercik. I am 39 years old (yikes! Almost the big
4-0!). My story is not about an earth shattering accident, or about
struggling and yearning for a cure for SCI, rather, my story is about
acceptance and facing a challenge put in front of me, and facing my
disability head on. My disability was and still is hardest for members of
my family to accept. Sure, it is never a good thing to end up with a spinal
cord injury and end up in a wheelchair. But these things, though bad as
they are can turn our lives around and make us better people. I have never
felt sorry for myself (well, maybe sometimes I get really pissed off, but
those moments are rare), rather, I accepted what happened to me and was able
to face it head on by constantly reminding myself that there were people out
there who were in far worse situations than me. I had a great job and
friends who supported me and were wonderful in the early weeks and months of
my disability. Without them and a couple of new friends I met on the way I
would not be where I am today. So, I want to begin my story by thanking all
of those people who supported me and believed in me and didn't preach to me
about cures and crutches and braces, but instead helped me focus on life one
day at a time. And most of all to my dear step sister, Julie Brewer who was
there from beginning to end, even though she was struggling with Lupus and
recently passed away. To her I am forever grateful, and her kindness and
love showed that blood is not really a factor when it comes to sisterly
love.

6 years ago I was an active woman, mother of two pre-teen boys, a member of
the Air National Guard and avid hiker, hummingbird observer, dog lover and
horse lover. On the weekends I spent my time with my boys and dog hiking in
the foothills of Orange County, California. In the summer of 1996, while on
active duty for 2 weeks in Arizona, I noticed that I had trouble keeping up
on the trails while mountain biking with friends. I also noticed that my
right foot seemed very weak after my morning walks with my dog. I began
seeing articles in women's magazines about multiple sclerosis and I became
convinced that I had all the symptoms. After my 2 weeks of military
training in Arizona I immediately made an appointment to see my doctor. I
was terrified. After my doctor checked my reflexes she referred me to see a
neurologist. She told me that it didn't sound like MS, but she wanted the
neurologist to check me out anyhow.

The neurologist examined me, tested my reflexes and ordered an MRI of my
brain. The results were negative. There were more tests of my reflexes.
He told me it looked like a tumor. I was scared, but still wasn't too
alarmed because he didn't seem to be very alarmed by it. Well, in between
HMO hassles of getting "approval" for the next round of MRI's and then
getting the actual appointment, 4 or 5 weeks passed by. I noticed that my
symptoms were getting worse. My right ankle began to give out on me and I
would sometimes almost fall down when I was standing still. The MRI of my
thoracic spine showed a tumor between the T-2 and T-5 range. The
neurologist then referred me to a neurosurgeon.

Again, more tests (some of them really embarrassing). The neurosurgeon was
a very kind, quiet man. On my first appointment he took 3 hours with me and
answered all of my questions. By this time it was December of 1996. He
explained to me the procedure that he was going to do to remove the tumor,
which is called a laminectomy. I was still apprehensive, so I asked him if
he could put me in touch with any other patients who had the same procedure
done. He put me in touch with a lovely woman who had a tumor removed from
her cervical spine. She had good reports on the doctor and her hospital
stay and was still recovering. She gave me a little more confidence and I
went ahead and scheduled the surgery for January, 1997.

The day came for surgery. My boyfriend took me to the hospital at the crack
of dawn. I was so scared I couldn't stop crying. I had never had surgery
before, or general anesthesia. I was terrified that I would die on the
operating table. The nurses started an IV, shaved the area on my back where
the surgery was to take place. Then I had to go to x-ray so the exact
location of the tumor could be marked with metal markers, then x-rayed.
This took a long time for the technicians to get done correctly, and each
moment that passed by my anxiety increased. They also made me late for
surgery and I was rushed to the operating room. There was much talk about
keeping schedules and the next scheduled surgery for that room may have to
be postponed. I didn't care what they were talking about, I was too scared
and too cold. It is an eerie feeling to be wheeled into the operating room.
It wasn't at all like I expected. I expected something like I had seen on
ER and Chicago Hope. The room was painted an ugly foam green, and the floor
was a horrid red tile. I remember thinking to myself how ugly the room was!
All the nurses, technicians and doctors said hello to me and they all seemed
to be so cheerful. Dr. Kim tried his best to comfort me. The
anesthesiologist did his work and I was fast asleep before I got to 7
(backwards from 10).

When I woke up I was in a whole lot of pain. People were all around me
talking to me and calling my name. They were asking me to rate my pain on a
scale of 1 - 10. It was a horrible pain that I had never felt before. It
was located in my back, and my head was killing me. I was told that the
headache was from the loss of spinal fluid and would take a few days to get
better. I was going to have to lie flat in bed for a while and they would
very gradually raise my head each day. Shortly after waking up Dr. Kim came
to talk to me. I was too groggy to realize that I was paralyzed. He poked
me and prodded me, then he told me that my right leg was paralyzed, and that
my left leg was somewhat paralyzed, but still was "in good shape". He went
on to explain that there was another tumor that was underneath the one that
was detected on the MRI. No one had any idea that this other tumor existed.
The first tumor was a lipoma, and is fairly common. The second tumor, he
explained, was parasitic-like and was beginning to "strangle" my spinal
cord. He told me that this was the tumor that was causing my symptoms of
weakness and shaking in my right foot. He didn't know what kind of tumor it
was, and said that he had to send it to the Center for Disease Control for
analysis. I asked him if it was cancerous, and his reply was "Most likely
not, but we won't know for sure until the results come back." I can't
remember if I cried at this point or not. My memories of the next couple of
days are vague at best. The next thing I remember is waking up the ICU,
where I stayed for a couple of days, then I was moved to a regular room.

All this time people from work were calling to find out how I was. My
family was calling. They say that I spoke with them on the phone, but I
don't remember any details. It must have been an amusing conversation to
say the least! My step sister Julie flew down from Edmonds, Washington to
be with me. She was my angel. She made sure that the doctors and nurses
were treating me right. She brought me junk food and fun projects to do in
bed together. She asked the questions that I could not think of. She spoke
for me when I couldn't. I do not know what I would have done without her.
She went and visited the rehab hospital that I was going to be transferred
to and assured me that it was not a chamber of horrors like I imagined. She
truly was my savior. If I had known then that she was going to be facing a
battle for her own life in the next couple of weeks I would have done many
things differently.

The room I was given was shared by me and another woman. I never saw her
face, or spoke to her. I only knew that she was there because the nurses
came constantly to suck out her lungs. It was very sad being in there.
Unfortunately I had to bare witness to her doctor informing her that she had
incurable cancer. I'll remind you that the results of the unknown tumor
were still not in and I was still terrified at the chance that I may have
cancer as well. I complained to the nurses and my doctor about they way
that I heard the fate of that poor woman next to me. Shortly after that I
was moved to a room on the oncology ward. Once my coworkers found out about
this the rumor spread that I was sure to have cancer and EVERYONE called me
to find out. The same day that I was moved to the new room the results came
back though. They were just moving me there because the room was available
and it was private. The second tumor was found to be a shwanoma.

So, in my private room I began some light physical therapy. By now I could
sit up in bed and was able to do some of cross stitching projects and read
magazines. When they asked me to sit up in bed it was a horrifying
experience for me. My body felt so weird. I was numb from the chest down.
I couldn't hold myself up without using my hands. It felt like my body was
dead, but my head and arms were not. I had a lot of pain in my left
shoulder, which could never be explained. I was in tears as the therapist
helped me to sit up and put my feet over the bed. The next step was
transferring into a chair. Again, a horrifying and painful experience. I
felt like I had failed miserably, and it wasn't like me to cry like that.
This was the worst experience I had through the whole thing. Shortly after
this I was transferred to St. Jude's Hospital in Fullerton, California.
Julie had gone there and met the nurses and the doctor who would be in
charge of my rehab. She assured me that the place was okay, though in my
mind if was a torture chamber full of evil doctors and nurses.

When I got to St. Jude's I was taken to a private room. Soon after a team
of physical therapists, occupational therapists and nurses came to evaluate
me. They had me do various exercises to determine my level of injury and
capability. Throughout this whole ordeal I was assured that I would walk
again. That was the goal. To walk again. In my mind I had just
surrendered and had vowed to do whatever these people told me to do so I
could go home. Someone came by and taped a schedule to my door. I was told
that I was to follow the schedule and get myself to therapy sessions without
the assistance of anyone. No one was allowed to push my wheelchair
anywhere. Jesus, I thought. This is boot camp all over again! That's what
I called it from there on....."wheelchair boot camp".

Up at the crack of dawn, eat breakfast and somehow get myself dressed. The
first time I did these things my physical therapist helped me. We all know
from our own experiences how this part of the story goes. She brought in a
wheelchair and off we went. It was strange having to learn how to do so
many basic things all over again. During one session I didn't have my
regular PT. I had therapy with a nice young, good looking guy. He informed
me that we were going to stand up with a walker. I agreed to the challenge,
but once again the fear came and so did the tears. He asked me if I wanted
to stop, and I defiantly informed him that he was NOT TO LET MY TEARS
prevent me from facing and accomplishing my next challenge, that he was to
ignore any tears and my defiant complaints. It was just my "head" talking
and I had to get passed it.

During the 3 weeks I had in rehab I learned so much about patience and
acceptance. I had never before seen anyone else using a wheelchair. There
were so many other people there. Young, old. Amputees and paraplegics.
Quadriplegics and people with brain injuries. There were a lot of senior
citizens there who were recovering from strokes. The one thing that I could
find to help me get through my own drama was the fact that no matter how bad
my situation seemed to be there was always someone who was worse than me.
Someone couldn't hold a paintbrush or remember the alphabet. This
experience changed my life and my outlook on life.

After 3 weeks it was home.....all that really had to be done was remove the
bathroom door and build a couple of low ramps. I continued outpatient
physical and occupational therapy. Since I couldn't drive my sporty truck
anymore it sat in the garage and I got around by using Orange County's
"Access" system, which is a curb - to - curb system that requires
reservations. Though it was a pain in the butt to use, and often a 5 mile
commute could take hours, I appreciated the fact that I could just get out
of the house. The only problem was that I couldn't be spontaneous and go to
the mall or friend's homes. By using the bus system, and the kindness of my
best friend to get around I was able to get around just fine. I had to stay
home on disability for 3 months before I could go back to work. I finished
a lot of cross stitch projects, watched a lot of daytime soaps and learned
to love the Cartoon Channel!

I was so glad to return to work as a secretary at a real estate investment
firm. Everyone was so excited to have me back and treated me as if I was
never gone. They were great. Shortly after returning to work though, I
began to lose ground in PT. I could no longer stand up or do the exercises.
I also began to lose control of my bladder. Also I had to kick my boy
friend out of the house when I found out he was seeing his ex. Thank God I
got him out of my life! The problem was that when he left some members of
my family thought that I should leave California and move in with them.
They thought that I couldn't wipe my own butt or something. I really let
them have it. Especially since no one bothered to visit me and see how I
actually could do laundry, cook and clean ALL BY MYSELF!

After again battling with the HMO I found out through a myelegram that I had
a tethered cord. Dr. Kim again scheduled surgery to fix the problem. This
time it was July. My Dad came down from Washington to help me out. The
surgery was successful, and I was amazed that the only pain I had was again
a spinal headache. 10 days in the hospital and I was back home. I could
once again move my left leg and after a brief period of recovery got back
into PT again. By this time I had met a very nice young man. He was 10
years younger than me, and to my amazement didn't seem to care that I was in
a wheelchair. We met at a country bar. He literally dragged me onto the
dance floor. He's now my husband. Thank God once again for sending me
people who love and care about me so much.

The next step in PT was walking again. I was fitted for a custom made leg
brace. Now, hold onto your chairs.....I used the damn thing for 1 week at
home and threw it in the closet. It was useless. Since I couldn't lock my
knee in my left leg, the brace did that for me by having a piece that slid
into place at the knee to lock the brace. This was nearly impossible to use
in the bathroom, since my bathroom was so small. When I sat on the toilet
my leg would stick straight out and hit the wall. I bent the metal on it a
couple of times because of the spasms in my leg. I tried once to open the
refrigerator and nearly fell over backwards. Once I went to get the mail
and my shoe got stuck in a crack in the sidewalk. I was stuck there until a
neighbor came to my rescue. That's when I threw it in the closet. I saw
that for me and my needs that the brace was useless. Life was much better
scooting around in my wheelchair. I couldn't bare the slow pace of the
walker. At least when I used my wheelchair I could run someone over! This
was a decision that my family couldn't accept. They could not ever
understand that with a disability such as mine, that walking was not all it
was cracked up to be. I am very happy that I made that decision and don't
regret making it.

five and a half years later here I am. I have a new job that I started 3
years ago (looking for a job is an entirely different story!). I finally
have a car, and am planning on getting a cool new PT cruiser that has been
customized for wheelers. My oldest son is graduating from high school this
May. I jet skied for the first time ever since my injury. I went horse
back riding, and lead an active life. It's still my dream though, to get a
chair equipped to handle the trails of the hills I once loved to hike. Some
day I will hit the lottery and be able to afford one of those chairs!

I believe that things happen to us for a reason. I don't believe that my
disability is a result of something that I did wrong or bad in my past, or
past life. Nor do I believe that God is punishing me for some reason or
that my faith is not strong enough to heal me. When I look back at certain
circumstances of my life I can see the path that brought me here. And you
know what? It's ALL good. I am happily married. I love my life (though I
could do without having bladder and bowel accidents), and I look forward to
being able to do more and more. I still love the outdoors and nature. I do
whatever I can to get myself to the places that I love. Life is not so bad
when you live it from a wheelchair's point of view. This is the message
that I want to send out to everyone I know and meet along the way. I want
to show everyone that being in a wheelchair isn't such a bad thing. I smile
at people and make jokes about how my body has a mind of it's own.

This is what I've learned so far. I still want to learn
more.................

 

 

 


 


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