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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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