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BobD @ techie.com
I’m a twenty-eight-year-old right above-knee amputee named Edie. I lost my leg to cancer when I was fifteen, and was devastated as you can imagine. I was and am a very active person, participating in all sorts of sports. I was participating in a summer girl’s softball league as I usually did when the cancer was discovered. As practice was starting that summer, I noticed that my right leg was very sore and sensitive just below the knee. I figured that I had bumped it without realizing it and had a bit of a bruise because I also noticed a darkish spot in the sensitive area. Of course I paid little attention to it and continued to practice with my team thinking that in a couple of days it would be all healed up.
On the third day of practice, I slid into second base feet first and felt a terrific pain when my right foot hit the bag. When I tried to get up, my leg was on fire and I couldn’t stand on it. My coach thinking that I had sprained my knee carried me to his car and took me to the emergency room at a nearby hospital. He called my mom as soon as he got there, and I was taken into an examination room; he had a medical release that my parents had signed allowing for treatment if they were not present so the doctor began to examine my leg right away. He checked it over then sent me down to x-ray to get some pictures made of the leg.
After what seemed like an eternity, a nurse came over and got us and took us to an examining room where we met the doctor. He had a rather glum look on his face as he was studying the x-rays hanging on the lighted board thing on the wall. I began to get rather concerned because he just stood there studying the pictures and not saying a word. After a few hours (probably two or three minutes) he turned to us and said that he didn’t like what he was seeing in the pictures. He had found what appeared to be a mass surrounding the bone of my lower leg just below the knee joint and extending about 2 inches along the bone. He was not sure what it was but feared it was a form of osteosarcoma or bone cancer. He said he didn’t like to hide what he was seeing so he always told the patient what he thought; if he was wrong and it was not as bad then it was easy to say that things were better than he thought; however, if he said that things didn’t look bad, and they were, then the blow to the patient was far worse. He also told us that he had a radiologist and an orthopedic oncology surgeon on the way to look at the pictures with him.
We asked him what the treatment would be if in fact it were a form of cancer. He frowned a bit more, then told us that my leg would have to be amputated and that the amputation would have to be above the knee, probably about mid thigh. When he said that, I broke into tears at the thought of losing a leg, I asked him why they couldn’t just go in and remove the mass from the bone and give me some kind of chemotherapy. He explained that the way these cancers grew was by attaching themselves to the bone and invading it. There was no way to simply remove the cancer because it was inside the bone and also would be invading the muscles and tissues around its location. The only successful treatment that had been found to date was amputation possibly followed by radiation and/or chemotherapy; it would be up to the oncologist to determine what type of treatment if any was required.
The doctor continued to talk to us about his findings and tried to set me at ease as much as he could. He was really a very caring person and made me feel a little better; however, as you can imagine, I was crying something fierce and really wasn’t listening to very much that he had to say. It wasn’t but a few more minutes before the other two doctors arrived; they immediately began looking at the pictures with the ER doctor, and it was obvious that they didn’t like what they were seeing. The radiologist confirmed that there was in fact a tumor on the bone that certainly appeared to be of a cancerous variety, of course until they could have it examined by the lab they couldn’t be absolutely sure.
The oncology surgeon sat down next to me and began to tell us what the options were. She said that we could do a biopsy and send the sample to the lab and wait for the results that would take several days before operating, or we could go ahead and remove the leg right away. As I was about to say that I wanted her to do the biopsy first, she continued with some additional details. First she said that in some cases the biopsy would cause the tumor the spread through the bloodstream and could cause tumors to develop in other parts of the body. She also said that if the tumor was not cancerous and they went in and removed it, there was going to be some of it that remained in the bone and would continue to grow. In almost all cases where this had been done, the tumor then became cancerous and spread like wildfire and amputation was often too late at that point.
I was of course a basket case at this point and my mom was too. My dad was able to retain some ability to think clearly and asked the doctor if what she was really saying was that the leg needed to be amputated and it needed to be done immediately. The doctor nodded her head and said that unfortunately that was exactly what she was saying. She then put her arm around my shoulder and told me that she felt badly that she had to give me this kind of news and that she really understood how I felt. She said that she was not going to tell me that after she had taken my leg off that everything was going to be just great because that was not at all the case. She told me that the cancer was going to be gone, that I might have to have some further treatment depending on the type of cancer and some further tests to be done on me after the surgery, and that that was a good thing. However, I would have only one leg, and life was going to be very different. She went on to tell me that she would do her very best to create a residual limb (stump) that would be very functional and able to support a prosthesis comfortably. She also told me about some of her former patients who were able to participate in many sports and activities after the loss of a leg; in other words, life doesn’t come to an end because of losing a leg.
I looked up at her and asked how could she know how I felt? She smiled and took my left hand and placed it on her right thigh and said that this was how she knew. I realized that she was wearing an artificial leg and that her leg had been amputated above the knee just as mine was about to be. As I looked at her leg and then at her, she began to tell me a little of her story. She, too, had been diagnosed with cancer while in high school; they had removed her leg, but no one was really able to tell her that she was going to be OK because they had not experienced it themselves. After her amputation, she found that life was in fact not over at all. She was able to do many of the things that she had done before, some of them differently but she was OK with that. When she graduated from high school a couple of years later, she decided that she was going to be an orthopedic surgeon because she would be able to demonstrate that life was not over with the loss of a limb.
After that discussion with the surgeon, I felt a little better and was able to stop crying long enough to ask her some questions about the loss of her leg and about what it would be like for me. She answered the questions as best she could, telling me that it was different for each individual for the most part, but that she could give me some general answers to my questions. I looked over at my folks, then turned back to her and said, “OK, when will you amputate my leg?” She told me that it was best to proceed quickly so she would schedule the surgery for as soon as an operating room was available. That could be later that same day or the next; she would find out and let us know. She then said that I would be taken to a room and she would meet us there a little later when she knew when the surgery would be done, but that now she needed to see another patient.
I was escorted, I insisted on wheeling myself, to my room by an orderly and of course my parents. After they got me settled in the room, they left to go home, change, make some phone calls to my brother and sister and get a few things that I would need. The doctor had told them that if the surgery was that same day it would not be until several hours later so they should leave for a little while and let me relax for a couple of hours. Before they left, both of my parents told me how proud they were of me for making the decision myself to have the surgery; they thought that was a very mature and adult thing for me to do.
After they had left, there was a knock on the door to my room and Dr. Dailey came in. She was using forearm crutches as she had removed her leg and had tucked the empty pants leg into the waistband of her slacks. She came over and sat on the edge of the bed with her stump lying on the bed next to me. She smiled and said, “I don’t suppose you have ever seen one of these before have you? I slowly shook my head as I stared at her abbreviated leg lying next to me on the bed. “Would you like to see what it looks like?” she asked, “and by the way, it’s OK to touch and feel it if you like.” I reached over and gently touched her leg; it was the strangest sensation to touch the stump of somebody’s leg.
Dr. Dailey got up off the bed and crutched over the door and locked it, and then she came back over to the bed and leaned her crutches against the bed. “Would you like me to take my pants off so you can see what it really looks and feels like?” she asked.
“Oh yes, I am really curious what my leg will look like after you operate on me,” I responded.
She said, “I don’t do this for the guys as you can imagine, but for us girls I find that it can be helpful to get an idea of what is about to happen so I often do this if I have the time.”
She pulled her pants down, leaving them on her good leg and sat back on the bed placing her stump next to me again. She picked up her stump with her left hand and pointed to the center of the end and said that if I pushed on the end I would feel the bone that was remaining in her leg. I did this but felt that there was a lot of something between it and the skin, so I asked her why that was there. She explained to me that the surgeon who had amputated her leg had joined the muscles from the front of her leg to the ones in the back for two reasons. The first was to provide a pad over the end of the bone and the second was so that she would be able to swing her leg back and forth. If that were not done, then there would be no way to control the leg since the muscles were not attached to anything. In the case of a normal leg, the muscles were attached at the knee so they had something to pull against when they were flexed; attaching the front muscles to the back did the same thing. Then she showed me the scar that was like a smile along the back of her stump and said that mine would be very similar to hers once it was completely healed.
As she pulled her slacks back up and tucked the empty leg back into the waistband, she asked me if I had ever walked with crutches before; I told her that once or twice when one of my friends had had to use them I had tried them but only for a few steps and that they had been the kind that fit under the arms. She asked if I would like to try hers since they were the forearm type and the kind that she preferred to use. I said that I would like to do that if it was OK; she said of course it was OK, if not she would not have offered. She helped me out of the bed and showed me how to grip the crutches, and then she adjusted the length a little. She sat in the wheelchair that was still in the room and told me to see if I could walk across the room holding my right leg off the ground. I took a few tentative steps across the room, and then returned to the bed. You did really well she commented, you will soon be able to glide along on them like you had done it all your life. She stood up from the chair on the other side of the room and hopped over to the bed, “You will also learn to use this method of getting around; by the way, my husband thinks that is the sexiest thing he has ever seen, but don’t over do it because over time it can damage your hip and cause you to have to have a hip replacement done.”
Dr. Dailey told me that she was able to arrange an operating room for 7:00 p.m. that night or 9:00 a.m. the next day, she wanted me to decide when I wanted to have the surgery. I thought about it for a moment and told her that I would prefer to get it over with, so if it was OK with her I wanted it done that night. She smiled and said that she thought that was the best decision because it would not leave me lying around thinking about what was about to happen for the whole night. “It’s 4:30 p.m. now, so relax for a while and I’ll see you just before you are taken to surgery. The nurses will come in and prep you and give you another shot to relax you about 6:00 p.m. By the way, you will not be able to eat anything now until after the surgery. That really means tomorrow because you will be out for several hours, then after you come around we’ll give you something to let you sleep through the night.” She leaned over the bed and gave me a big hug. “Don’t worry too much, things will be OK. I’m living proof that there is life on one leg so things will work out.” With that, she took her crutches and headed out the door.
Mom and Dad showed up a few minutes later with a few things that they had brought me. The first thing that Mom handed me was my contact lens case, saying that I really should go ahead and take them out and get it over with. Since I don’t really mind wearing my glasses, I’m pretty blind without them or my contacts and I really got the contacts because I need my glasses for sports and I was always breaking them, so I took my lenses out and put my glasses on. In a way, it was a good thing that Mom brought them for me because I had been crying so much that the lenses were starting to bug me anyway.
About that time, a nurse came in and said that she needed to get me out of my softball uniform and clean me up a bit for the surgery; I still had dirt on my left leg from the slide into second base. The right one had been cleaned up pretty well in the ER while they were examining it. She told Dad that he should go get himself a cup of coffee or something and be gone for about 15 or 20 minutes. He asked me if I wanted something to eat or drink, I told him no because the surgery was to be at 7:00 p.m. and I couldn’t have anything before then. He and Mom looked a bit surprised about that so I told them about the visit from Dr. Dailey and that she had given me the option of having the surgery that night or the next day and that I had said I wanted to get it over with so she was going to do it that night. The nurse told us that I was correct that I could not have anything but water until after the surgery so on that note Dad headed for the cafeteria to get coffee for him and Mom.
The nurse got me cleaned up and into a hospital gown. She asked if I was in any pain, which of course I was but not too severe since the medication they had given me earlier had not worn off. She said that if I felt I needed something, the doctor had left orders for more pain medication but only if I needed it. Dr. Dailey didn’t want me to be too doped up before they put me under for the surgery.
As Dr. Dailey had said, at about 6:00 p.m. a nurse from surgery came in and began to prepare me for surgery, she shaved my leg and gave me a shot that she said was a mild sedative intended to relax me a bit.
Dr. Dailey showed up a little later in her surgical gown, pushing herself in a wheelchair with her leg in her lap. She told us that she figured we might want to see what an artificial leg looked like and how it worked. She stood the leg up in front of her chair and described how it worked. It is a very modern type of prosthesis that uses what she called a suction socket. It has a small hole in the thigh that is called a suction valve; when she puts her stump into it the air is forced out of the suction valve, then a screw-in plug is put in to seal the hole and create a suction that holds the leg on her stump. Dr. Dailey proceeded to put a sleeve of cloth she called a stump sock on her stump and then threaded the excess through the hole in the leg; she pushed her stump into the socket and pulled the stump sock through the hole and put the suction valve plug in place and screwed it in tightly and pulled the outer covering up over the thigh. Dr. Dailey stood up and showed us that she could pull on the leg and it would not come off because the suction was holding it in place. She asked my parents and me if we had any questions about the leg or anything else that she could answer for us before I was taken to surgery. Dad said that he had a lot of questions but none that needed to be answered now other than how long she expected me to be in surgery and the recovery room. Dr. Dailey said that she expected the surgery to take less than an hour and that I would be in recovery for a couple of hours after that. When I had come out from under the anesthetic enough for them to get a check on how I was doing, I would be given something to make me sleep through the night; after that I would be brought back to my room. Mom asked if they would be able to visit with me in recovery before they gave me the medication to put me out for the night. Dr. Dailey said that they could but not to expect me to be very coherent before sometime tomorrow.
As the doctor was finishing her answer, there was a knock on the door and two attendants in surgical gowns came in with a gurney to take me to the operating room. Mom & Dad each gave me a hug, Mom was extremely upset and Dad had to try and comfort her. Dad took her out of the room as I was being transferred to the gurney. The sedative that had been given me earlier was doing its job very well, I was totally relaxed for the first time since the ER physician had told me that I might be losing my leg. I was taken to the operating room where, after transferring me to the operating table, a doctor introduced himself as the anesthesiologist and said that he was going to put some anesthesia into the IV line attached to my arm, after which I would probably not remember anything until the next morning. His prediction was right on target.
The surgery came off without a hitch, as did my leg. As Dr. Dailey predicted, my stump is about at the midpoint of my thigh, rounded with a scar along the back edge. I’m told that I came out from the anesthesia and talked with my parents and the nurses, and then after they put something in the IV, I was out again like a light. I woke up the next morning with a horrible burning sensation in my right leg right around and just below my knee. I thought that for some reason Dr. Dailey had decided not to amputate my leg and the tumor was hurting worse than it did the day before. Mom noticed that I had awakened and came over to the side of the bed and asked how I felt. I asked her why Dr. Dailey had not amputated my leg as planned, why it hurt so badly, and to please give me my glasses. As she handed me my glasses, Mom told me that the leg was gone and that what I was feeling was something called phantom pain. She told me that Dr. Dailey had been in to see me about a half hour ago and had told her that I might wake up complaining of the leg hurting. She told Mom that she would leave orders for pain medication at the nurses’ station but wanted me to use it sparingly because it was a narcotic and she didn’t want me to become addicted to it. As I looked down toward the foot of the bed, I saw that the sheets were being held up off the bed by some type of frame. I lifted the sheets and looked under them and sure enough my right leg was gone; it ended about where mid-thigh would have been and was all wrapped up in bandages.
Mom asked me if I felt I needed some pain medication and when I told her that I did, she rang for the nurse. The nurse, expecting me to have awakened and in need of pain medication, walked into the room with an injection in her hand and proceeded to give me a shot. A few minutes after administering the drug, the pain began to subside. Dr. Dailey came into the room a few minutes later when she heard that I was awake. She explained the phantom leg thing to me and asked if I had any questions for her before she left to make rounds, I told her I didn’t think I did right then, but probably would as time passed. She said that the nurses would be in to change my bandages and get me up for just a few moments later in the morning, and that by the next day she wanted me taking a few steps on crutches.
Sure enough, just before noon a couple of nurses came in with a cart loaded with bandages and other stuff. The told me that they were going to change my bandages, and then I was to sit on the side of the bed for a few minutes. If I felt OK after sitting on the side of the bed, they would stand me up for a few more minutes then it would be back to bed. They asked if I wanted to watch them change the bandages or would I like for them to put a screen in place to block my view; they went on to tell me that my stump was going to look pretty gross at that point, but in just a few days, things should improve to the point that it would be looking pretty good. The new methods of suture wounds like this allowed them to heal very quickly. I thought about their offer to watch, then answered that that I would like to watch but if it began to bother me, could they stop and put up the screen then. The nurse who appeared to be in charge said that it would be no problem whatsoever to do that, so she pulled the sheet down and removed the frame. She told me that she was not going to put the frame back; however, if I needed it to be sure and let someone know and they’d put it back right away.
As the bandages came off, I realized that my stump was pretty gross looking, just as the nurse had said. She explained that it was very normal for all of the bruising to appear, but it would be gone in a few days. There was some blood on the bandages and on my stump; she cleaned it up very carefully, after which it looked much better. After applying some ointment, she began to put new bandages on it. The bandages were followed by an ace bandage that was to begin the process of shrinking my stump so that the folks that would build my new leg could make a good cast impression of it from which to build it. When the bandaging exercise was completed, the two nurses helped me to a sitting position on the side of the bed, this was the first time that I really got a good look at how long my stump really was as I compared it to my remaining leg. It looked to be about the same relative length that Dr. Dailey’s stump was, just as she had promised. When they first sat me up, I felt a little light headed; however, that feeling passed in just a minute or two so they helped me down off the side of the bed to stand on the floor. As they stood me up, I raised my stump as if to protect it from hitting something. I have no idea what I thought it might hit almost two feet off the ground. This exercise was a total success so I was helped back into the bed after a couple of minutes. I felt just fine standing up and being balanced by the two nurses.
Dr. Dailey stopped by late that afternoon as she was doing her rounds; she had a pair of crutches with her that she said were for me. She told me that these were underarm crutches that she wanted me to start out using; after a while I could decide if I preferred this type or the forearm style like she was using the day before. She and Mom proceeded to help me to stand again; only this time she put the crutches under my arms and allowed me to balance myself. I asked if I could take a few steps, but she said that it was a little too early to try that; however, she said that I would get to do that the next day and could wander around the hospital the day after that if I felt up to it.
Dear readers, you are probably thinking at this point that I was taking all of this as if nothing had happened; however, rest assured that this was not the case. I had numerous bouts of being very emotional and crying my eyes out throughout that day and the next few days, it was a good thing that Mom brought me my glasses because I would have floated the contacts out of my eyes with all the water that ran out of them. There was really something about Dr. Dailey, in that whenever she was in my room I was not emotional at all and had a good grip on myself. I think now that it was probably the fact that she was an amputee and I felt really comfortable with her and with what she was telling me since she was the voice of experience. By the time I got out of the hospital, we had become extremely close friends, a friendship that has lasted to this day. We still see each other often when my husband (you’ll learn all about him in a later segment of my story) and I visit my hometown and the four of us go shopping or out to dinner together. Of course both of us are always on crutches whenever we go out together as that is how our hubbies prefer us to be.
As Dr. Dudley predicted, I was able to crutch around my room the 2nd day after the amputation of my right leg. As one might imagine, I was a bit wobbly at first but quickly began to get the hang of how to balance myself on one leg. It seemed easier than when Dr. Dudley had let me crutch around on her forearm crutches before the surgery. As I thought about it, I realized that at that time I had a right leg that I was holding up in the air so as not to put any weight on it. Now there was no right leg, or not much of one at least, so it was not throwing me off balance as before. The following day, when Dr. Dudley came in to see me, she asked how I was feeling and if I would like to go for a walk with her. I told her I really would like to go for a walk and that I was feeling great, other than a bit of throbbing in my stump and being a little weak.
She told me that I was exactly where I should be in my recovery from the surgery, other than some patients would be experiencing more pain at this point; however, because of the fact that I was young and in excellent physical condition from playing sports, my body was able to bounce back far better. She asked Mom if she had brought me any clothes to wear, which she had done. She had brought some nightgowns and some baggy shorts and tops as suggested by Dr. Dudley. The doctor told me that if I wanted to wear shorts during the day it was perfectly OK to do so; since I was no longer hooked to the IV, I would be able to get up and walk as much as I wanted to. She encouraged me to walk as much as I could because it would help me to get my strength back that much faster. She then removed the bandages from my stump to see how it was healing; she commented that it was looking great so she was not going to put as large a bandage as it had had before. In just a few days, we’ll be able to remove all of the bandages she commented.
After she bandaged my stump again, she and Mom helped me to get dressed in a pair of the shorts Mom had brought. I took my glasses off and laid them on the bed so that I could pull my top over my head, Dr. Dudley picked them up and looked at them saying that I was obviously very nearsighted, that my glasses seemed to be very similar to her own. I smiled and said, so you wear glasses too, seems as we are more alike now than I thought we were. She grinned and said that in fact we were.
She and Mom helped me out of bed and handed me my crutches; it was kind of strange to hear them referred to as “my crutches,” and they really were, since I now needed them to be able to walk at all. They were now a permanent part of my life. As we were heading to the door, she suggested that Mom push the wheelchair along so in case I tired more quickly than expected, I could simply sit down and be brought back to the room. We walked all the way around the floor and back to my room without me needing the chair; however, I won’t tell you that I wasn’t tired, I was exhausted but felt really good about my accomplishment. Dr. Dudley told me that it would not be very long before that amount of walking would not even faze me at all.
She also told Mom that she and Dad should start thinking about getting a wheelchair for me to use at home. There were lots of times when a wheelchair would be far more convenient than crutches, especially at home. Mom asked her what type of chair she would recommend they get me, because if she felt I needed it, then they were going to get it. Dr. Dudley suggested that I would probably be most comfortable in a lightweight sports type of chair. If I decided to participate in wheelchair sports, this would be the kind of chair I should have. She suggested that she could bring hers in to let us see it as well as a couple of catalog she had at home. Mom thanked her and said that she would appreciate her doing that. Dr. Dudley also added that once I was released from the hospital I could come to her house and she would show me some of the special appliances she used, such as her running leg and variety of other things. I thanked her, and she left to continue on her rounds.
The third day after surgery, my best friend, Holly, came up to the hospital to visit me; Mom had been keeping her up to date on what was going on at the hospital. She broke out in tears as soon as she entered my room, saying how upset she was about what had happened to me. I finally got her to settle down so that we could talk, I told her that although I had been devastated by the loss of my leg, I was trying to put that behind me and get myself back on my feet (or foot I guess) as soon as I could. I told her that my doctor was herself an amputee and that she had become a doctor with one leg. If she could become a doctor, then I could certainly do anything I wanted to as well. After Holly had dried her eyes, she put her glasses back on, she is almost as blind as I am, and we hugged for a good long time. We talked about my leg and what was going to happen in the future. Holly told me she thought I was the bravest person she knew and that if this were to happen to her she knew she would not be able to do anything ever again. I told her she was not giving herself much credit, and that I knew that she would be just like me and deal with it the best that she could. We talked for a little longer, then I asked her if she would like to go for a walk with me, as it was time for me to do that again; she just looked at me and said she didn’t understand how could I walk if they had cut off my leg. I chuckled and reached for my crutches, which were standing next to the bed and stood up. This is how I’m going to walk I said, just as I will for the rest of my life. She just looked at me and started crying again. I gave her a hug again and asked why she was crying this time; she said that she just couldn’t accept me on crutches for the rest of my life. I told her that actually I would get a prosthetic leg in a few months and would be able to walk with that without crutches; however, if I didn’t have the leg on, I would have to use crutches, hop, or my wheelchair. In other words, I was not going to be able to walk without some kind of aid or another.
We headed out of my room and walked around the floor as I had been doing since the day before. I was already finding that this was getting easier each time I did it. When we got back to my room, Holly wanted to know what it was like to walk with crutches because she had never done it before. I sat on the bed and handed her my crutches and told her to try them out. She held her right leg up off of the floor and tried to walk around my room; she managed to do so without falling but just barely. This is so hard to do, she commented, how do you do it so easily? I told her that because my leg was gone I had no choice but to learn how to do it and that besides I had had just as much trouble before the leg was removed and found it much easier after the surgery. She stayed around for a little longer but had to go to meet her mother to run some errands with her. She said she would be back again in the next day or two. Holly was back almost every day after that until I was released and allowed to go home.
As expected, a week after my amputation I was allowed to go home. Dr. Dudley had arranged for me to participate in a rehabilitation program as an outpatient so I could be at home in the evenings. I started rehab on the Monday after I was released. I thought that playing sports was hard work, but it was nothing like the work I had to do in rehab. They had me doing exercises to strengthen my left leg and to build up the muscles in my stump and keep it flexible. I was told that it was very important for me to do this so that my stump would be able to support a prosthesis. They also told me that they would not be able to start building my leg until my stump had shrunk to its final form, hence I had to wear a special elastic sock on it to help this happen as soon as possible. My upper body strength was not forgotten in this program. Because I would be using crutches a lot, it was necessary for me to develop upper body strength as well. I was told that my overall physical condition was a big plus for me so I would be able to complete my program in a matter of three or four weeks. This was normally a five- to six-week program for most people.
One evening after I had been home for a few days, Holly was at my house and we were up in my room watching TV. I had just crutched in from the restroom when she asked me again what it was like to walk with crutches and what was it like to have only one leg. I responded that I was pretty new to the one-legged life so I really didn’t know just yet, but that walking on crutches was not all that bad. By this time I had been given a pair of forearm crutches to see which ones I liked best. I really liked the forearm crutches and was using them the most. Dr. Dudley had told me that she actually had accumulated several pairs of crutches and used some of them as accessories to her outfits. Anyway, back to Holly and her questions, she told me she would really like to experience what it was like to have only one leg but didn’t know how to do that without having one amputated as I had. I told her that she probably didn’t want to have one amputated; it was not much fun at all to go through it but I had decided that I was going to get on with my life and be the best one-legged person that I could be.
She continued to ask me questions until I had an idea. I went to my closet and got a wide ACE bandage that I had from a knee sprain a couple of years ago. I told her to fold one of her legs back and I was going to put the bandage on it so that she would have only one usable leg like I did. She stood up and took her shorts off and folded up her left leg, I wrapped the bandage around it as tightly as I could, she has skinny legs so when I was done it looked like she only had one leg and her stump had been wrapped up in an ACE bandage like mine had been in the hospital. The only problem was her foot sticking out against her butt. She sat on my bed and pulled her shorts back on, they were really tight on her stump but held her foot against her butt so that it was not as obvious. I crutched back to my closet and got the underarm crutches that Dr. Dudley had originally given to me. Since I couldn’t carry them to her, I chucked them across the room to her. She stood up and tried to use them but since I am a couple of inches taller than she it they were too long so we had to adjust them for her.
Holly finally got up on her one remaining leg and crutched around my room. She said that it was easier than when she tried it in the hospital and agreed with what I had told her then that it was probably because she didn’t have a leg being held up off of the floor. She crutched around for a while longer and said that she felt like she really wouldn’t be as upset as she had thought if she had to lose a leg. She said it was kind of fun walking on one leg with crutches. In fact she spent the rest of the evening with her leg up as we watched TV and went to the kitchen for snacks and cokes.
When Mom saw Holly on crutches and smiled as she realized that Holly cared enough about my feelings to want to be able to understand what I had to deal with. Holly started to apologize for what she was doing, but Mom told her that it was OK and that any time she wanted to be one-legged at our house she was welcome to do it. Holly thanked her and told her that she was afraid that she was in big trouble with Mom for what she was doing.
When we got back to my room, Holly asked me if it bothered me for her to pretend to be one-legged, considering that she was imitating me. I said that it didn’t bother me at all; it was kind of fun seeing her on one leg and enjoying it. She was spending the night with me so she kept her leg up until we went to bed, as soon as she was up the next morning she wrapped her leg again and spent almost the entire day that way. She had to let it down a couple of times because it had begun to hurt, but after the pain was gone, she wrapped it up again.
I had been in rehab for a bit; my stump was pretty well healed and had shrunk much more than I had expected it to. The tight sock that I had been wearing, along with the exercises I was doing, worked. One day the therapist told me that it was time to see the prosthetist to determine if my stump was ready for the cast to be made from which my temporary leg would be constructed. The prosthetist felt that it was quite ready so he put some stocking material over my stump, pulling it tightly up to my crotch on one side and my hip on the other. He made some marks on it then removed it and cut of some excess material before putting it back on. As he was doing this, he explained what he was doing. He said that the stocking was to protect my stump as he put a plaster cast over it. Once the cast was dry, he would remove it and use it to make a mold of my stump that he would use to build the socket for my new leg. As he talked, he tied off the stocking material at the bottom of my stump with a piece of string, and then he cut off the excess material below the string. That done, he brought over a bucket of water and some rolls of casting material that he put into the bucket to get it wet. He wrapped my stump with the wet material until he had it completely covered. He further explained that the reason the cast went all the way to my crotch and then to my hip was so that he could get a complete mold of my stump, he would then create the mold. When he made the socket, however, it would only come up to about an inch below my crotch but would be higher on the outside part. Once he had completed the cast and it had dried, he removed it, then had me lie down on a table. He very carefully took measurements of my left leg and foot. He measured the distance from my crotch to my knee and from my knee to my heel, and then he measured the distance from the end of my stump to the bottom of my heel. He explained that all of these measurements would be used to create my new leg. He further told me that he would have a temporary leg ready for me to try in a week to ten days.
Holly had started spending lots more time at my house when I was not at rehab; anytime she was there, she would wrap up her leg and we crutched around like two amputees. The more she had her leg tied up, the less it bothered her and the longer she could keep it up without having any pain. On one occasion, she decided that she wanted to see if she could hide her leg and really look as if she was an amputee like me. She tried on a couple of my below knee skirts and found one that was pretty full and pleated that hid her leg and foot fairly well. Then she decided that she needed to do a better job of hiding her foot so we found some foam rubber that Dad had in the garage and made her a butt enlargement insert. I borrowed a girdle that Mom had and we put it on her and added the foam inserts. Since Holly really didn’t have much of a butt, the inserts gave her a much nicer shape and completely hid her foot. Then she went into my closet and found a pair of platform mules I had there; she tossed me the left one saying, I don’t need this one so you use it! She slipped her foot into the shoe, and when she stood up, she realized that the crutches were now too short so she grabbed my forearm crutches and walked around the room with them. They were the right length, so I extended the underarm set for me to use.
Holly said that she was sure she could go out in public like that and anyone who didn’t know her would be convinced that she was an amputee just like me. We were both about to celebrate our 16th birthdays and would be eligible for our driver’s licenses. We had both driver’s ed the previous spring, and I had had a special course that summer to learn how to drive with my left foot since I no longer had a right one. We decided that as soon as we had our licenses we would go to a mall on the other side of town where we would not be recognized and she was going to pretend that she was an amputee. We would be two one-legged girls out to do some shopping.
For my birthday, Mom and Dad gave me a car that had hand controls. Dad had found it on a used car lot; it was in really good condition so he bought it. He had an accelerator added on the left side so that I could use my left foot to drive or the hand controls. They also gave me a really neat sporty black and pink wheelchair for me to use around the house or for wheelchair sports. I knew that they had not planned on giving me the car; so when I asked why they had decided to get it, Dad said that he and Mom felt that because of the loss of my leg I would not be able to walk as far as I would have been able to with two legs and that I would need to be able to take my chair with me when necessary. Thus they had talked to Dr. Dudley and she had agreed that a car would be very useful. My new wheelchair had arrived a couple of days before my birthday, so they gave it to me on my birthday as well as a couple of other things that are not really important to this story.
Holly came over the next day, which was Friday; she was going to spend the weekend with me because my parents were going to be gone all day Saturday. When she saw the new chair, she asked if she could try it out. Of course I told her that she could and that she was welcome to use it any time she wanted to. She sat in the chair and picked her legs up one at a time and placed her feet on the footrests. I looked at her sitting in the chair; her legs are so skinny that it appeared that they were really paralyzed and atrophied from years of not being used. That day, she didn’t tie her leg up at all; she rolled around in the chair. She did everything she could not to use her legs at all, transferring herself to the bed or the couch and even when she had to use the restroom transferring herself to the toilet. Later in the day, as we were in my room watching a movie and talking, she said that she thought she had found the way she was supposed to live her life. She asked me if I knew how some people felt that they were not in the right body, how some men believed that they were supposed to be women and even a few women felt that they were supposed to be men? I said yes, I was aware of people like that and what about it? She went on to say that she had always felt that she was not in the right body; she knew she didn’t want to be a man but felt that something about her body was not as it was supposed to be but had never been able to figure out what it was. I think I now know what it is that my body is supposed to be, it’s supposed to be paralyzed from the waist down leaving me no use of my legs. I’m supposed to be in a wheelchair, not walking around on two perfectly good and functional legs. When I’m sitting in this chair, I feel more comfortable and right with myself than I ever have.
She went on to tell me that this was something that she had never told me about, nor had she told me about her mom taking her to a psychologist the past spring for her to try and find out why it was that she had these feelings. After quite a few sessions, the psychologist agreed that she certainly had these feelings, that they were real, and not as uncommon as one would think. However, she was not able to help me understand what it was that I felt should be different about my body. She then asked me if I remembered how she needed to leave so quickly when she came to visit me in the hospital the first time. I told her that I did and that I seemed to remember that she had to run some errands with her mom. That’s what I told you; the truth is that I had an appointment to see the psychologist. That was my last visit with her; it was at that visit that she told my mom the results of her findings. She told me that hopefully one day soon I would have some experience that would bring to light what it was that I felt should be different about my body. Well, today I have had that experience, and now I know what it is that should be different about me: I am supposed to be a paraplegic; at least I think that is the right name for someone whose legs are paralyzed and unable to walk.
I asked Holly if she was going to tell her mom what she had discovered. She said that she was not sure what she was going to do. She only knew that she wanted to be in this wheelchair for the rest of her life. I told her again that she was welcome to come over and use it as much as she wanted to, and that when we went to the mall as disabled girls, she could use the chair instead of tying up her leg as she had planned. When I said that, her eyes lit up like I had never seen them before, let’s do it tomorrow she said! That sounded like a really good idea. Mom & Dad were going to be leaving the house very early and wouldn’t return until very late that night; they were going to some kind of charity golf tournament and banquet at a golf course about 100 miles from our house. Dad’s company was one of the main sponsors of the event so Dad had to be there.
It was getting late, so we decided to go out and get a burger so that Holly could ride in my new car. We went out and told Mom what we wanted to do and that we would be back in a couple of hours. Mom chuckled again when she saw Holly in my new chair, “trying out life as a paralyzed young lady, are we?” she asked. Holly told her that she was and that she thought she might like that better than being one-legged. Mom laughed and said that whatever she preferred was OK with her. We headed out to the garage, Dad had built a ramp for me so that I could get out of the house easily when in my chair or even on crutches, and went to my car. We luckily had a three-car garage so I had a place in the garage to park my car.
Holly headed for the passenger side and opened up the door, and then she looked at the seat of the car then back at the chair. How do I get from this chair into the car she asked? I’m not so sure that I know the answer I responded as I slipped into the driver’s seat. Try getting as close to the seat and open door as you can and see if you can grab the seat with one hand and the chair with the other and swing your butt over to the seat then pull your legs in. She tried that, but the first time the chair began to move because she had not locked the wheels. She positioned the chair again and locked the wheels; this time she managed to get her butt into the seat. I suggested that she turn sideways in the seat and fold the chair then put it in the back seat before she pulled her legs into the car. With some effort, this worked out rather well and we were ready to head for the burger place.
Holly suggested that we go to one on the other side of town so that she could get out and go inside using the chair. We really didn’t know where one was so we drove around for a while until we found one that we thought would be OK. She pulled the chair out from behind her seat and transferred to the chair without too much trouble and even made it look as if she had been doing it for a while. I was still a little uncomfortable being on one leg and crutches, but Holly acted like she had been in a wheelchair for years and was perfectly at ease with her disability.
We rolled and crutched into the burger joint and found a table that she could easily get up close to; a waitress came over and removed a chair so that made it easy. We ordered and ate our burgers then decided that we should get on toward home, as Mom would be wondering about us soon.
As we were leaving, I suggested that she drive so that she could use the hand controls. She lit up again as she had when she first sat in the chair that afternoon and headed for the driver’s side of the car. This time, she transferred into the car like a pro and put her chair in the back seat as if she did it every day. After pulling her legs into the car and getting herself situated, she started the car and drove off; she had a huge smile on her face.
A few days later, she told me that she had talked to her mom about her feelings and the chair. Her mom suggested that it would probably be a good idea to visit the psychologist again and talk with her about this new discovery. She had an appointment to see her the following week. After seeing the psychologist several more times, Holly told me that the result was that the psychologist agreed that she had probably discovered her inner desires, but recommended that she not try to do anything to cause an injury that would confine her to a wheelchair as the results could be much more severe than anticipated. She suggested that Holly get a wheelchair to have at home and use it around the house and even use it if she were going somewhere out of town where she would not be known. She said her mom, who is apparently a very understanding person, agreed and said that she would get her a wheelchair like mine and even agreed to have hand controls put into her car when they were able to get one for her. Holly’s dad had died in an industrial accident when she was a little girl, he had had a large insurance policy through his employer, but her mom still had to work. She had been saving up money to buy Holly a car and pay for her college education, but the car was not to come before she finished high school. Holly was really excited about this turn of events; her mom found a used wheelchair a few days later and got it for her. Holly told me that she was thinking about going to a college out of state so that she could go as a handicapped woman in a wheelchair and no one would know the difference. We were just starting our junior year in high school so she had two years to wait for her car but at least she had her wheelchair and was as happy as she could be. She was at my house, or I was at hers, practically every day as she lives next door; she used a wheelchair as much as she possibly could. We went to the mall on the other side of town two or three times a month so that she could use her chair outside of the house.
By this time I had gotten my temporary leg and was using it most of the time to learn how to walk smoothly with it. The prosthetist had explained that the only way I would be able to walk smoothly was to use the leg almost exclusively for several weeks. I had to go back several times for him to make minor adjustments, but all in all, the leg worked well and fit comfortably. Within a few weeks, I had learned to walk very well with the new leg; at first the idea of kicking my leg forward to operate the leg’s knee then snapping it back to lock it was very confusing, but with practice I figured it out. Once I had mastered the leg and all the necessary adjustments were made, my actual new leg was assembled. The temporary one had been a pylon type of leg with no cosmetic covering; however, the new one had a very realistic covering on it that matched my skin color very well. If you didn’t know that it was an artificial leg, you would think that I had a small limp when I walked as if I had hurt the leg or knee.
Even though the new leg looked really good, most of the time I preferred to use the pylon leg because it was a little lighter and I really didn’t care if it was obviously artificial or not. In fact, I kind of liked shocking people when they saw me wearing an obviously artificial leg. It seemed to cut down on the stares. I also liked my crutches and often used them instead of a leg, the only problem I had with them was that my hands were permanently occupied when on crutches. Any time I went out on crutches, I just wore a fanny pack or a backpack depending on what I was going to be doing.
School had, of course, started by this time, and I was mostly wearing the pylon to school if not crutches. I noticed that lots of boys seemed to watch me and be interested in me who had not shown any interest in the past. This interest was at its highest when I was using the pylon or crutches. I was also having to wear my glasses a lot more; I had gotten a nasty infection and the doctor had advised me that if I wanted to continue to wear contacts that I would have to wear them sparingly. Not long after school started, a boy named Randy who I had wanted to date for the last year or so, he is very popular because it is really cute and one of our best football players. I figured that since I was going on a date I would wear the leg with the cosmetic covering and get dressed up a little; so I put on a short skirt and a top that would show off my not so bad figure. I even put on panty hose because with them on it is impossible to tell that my leg is artificial. I had found a pair of platform mules that would stay on the foot well, and in which I was able to walk very well. Just before Randy was to pick me up, I slipped my contact in hoping that I would be able to wear them for the evening; however, just in case I put my glasses and a contact case in my purse.
The date went exceedingly well, we went to a nice café for a nice dinner then to a movie. Randy was a perfect gentleman until close to the end of the movie when he put his hand on my right leg. Of course I couldn’t feel it when he did it, but I saw his hand move off of the armrest to my leg. He started to rub my leg a little; then I think he got a little embarrassed because he started to move his had away, but I put my hand over his letting him know that it was OK.
After the movie, we went to a local teen hangout to have a coke and talk for a while. As we sat there, I could tell that Randy wanted to say something but appeared to be afraid to say whatever it was. Figuring that I knew exactly what he wanted to talk about, I decided to break the ice by asking him if it bothered him that I had only one leg and an artificial one. He smiled and kind of stuttered that it didn’t bother him at all. In fact he said it didn’t bother him at all if I was wearing my pylon leg or was on crutches; in fact, he said that he thought I was very beautiful regardless of which leg I wore or no leg and crutches. By this time, my contacts were bothering me a lot so I excused myself explaining that I had to take them out and headed to the restroom. When I returned, Randy had an even bigger smile on his face than when I had left. I had my suspicions that Randy was one of the boys that Dr. Dudley had mentioned to me, an “admirer” she had called them.
I decided that I was going to test Randy and see if he would own up to being an admirer so I said to him that I hoped he didn’t mind the glasses but I was blind without them and that my doctor had told me that when my eyes began to bother me I needed to take the contacts out right away. Once again he said that he still thought I was beautiful and that the glasses added a certain something to my looks that he liked, a kind of exotic look he said. Bingo! I thought he is an admirer or he would not have said that. Most of the boys that I knew had said that they really liked me better in contacts not glasses. Then I asked him if I could ask him a personal question; if he didn’t want to answer I would understand; however, it was something that was important to me. He said that he didn’t mind me asking and that he would probably answer because he didn’t like to hide things about himself.
So, I asked him if he was attracted to me because I was an amputee or because I wore glasses, both or neither. He hesitated for a moment then said that he just as well admit it, he was attracted to girls who were disabled, in particular those who had lost a leg or were paraplegics. He was also attracted to girls who wore glasses, in fact the stronger the better. He admitted that he had felt this way ever since he had become interested in girls. The only explanation he had was that his mom had lost a leg in an automobile accident before he was born so he had never seen her with two real legs. She was not able to walk with a prosthesis so she mostly used crutches except around the house where she often used a wheelchair. Most of the time when she and his dad went out, she wore a nonfunctional cosmetic leg and used her wheelchair. She was also very nearsighted and wore glasses all of the time because her eyes wouldn’t tolerate contact lenses. He guessed that since he had grown up with an amputee in his home, he just figured that since his mom was really great, all the best women must be amputees or confined to wheelchairs.
Randy then gave me a sheepish look and asked if it upset me that he liked me partly because I was an amputee and wore glasses; he said he was concerned that I wouldn’t want to go out with him anymore because of his feelings. I chuckled and said that I didn’t mind his feelings; in fact, I was kind of glad he felt that way because if my missing leg or glasses turned all the boys off then I wouldn’t be asked out at all. I felt like because of his attraction to my disability he was likely to be more comfortable with it so it wouldn’t interfere with our relationship. I added that I hoped that he wasn’t attracted to me only because of my disability because if that were all then I felt the relationship wouldn’t go very far. He reassured me that he was not attracted only for my disability; he really liked me and enjoyed being with me. He said that he had wanted to ask me out for a long time but that he as a little shy around girls, especially those that were standouts in sports or school. He felt that they would only see him as a jock and not as a person that they would enjoy being with; basically, he felt intimidated by girls like that. Since I had been one of the best athletes among the girls, he was afraid to ask me out although he had wanted to long before I lost my leg. So the cards were on the table; we had both wanted to date the other and my losing a leg had given Randy the courage because of his special interest in amputees to ask me for a date. I decided that that worked for me just fine.
To be continued…
Posted in Amputee-Story in three parts
May 15, 2001, message 1120, May 24, 2001, message 1133, and Jun 9, 2001, message 1173
Reformatted for Amputee-Story1, June 2006, April 2008