Waking up to a cup of coffee in bed was a very pleasant experience, I reached for my glasses in the drawer of the nightstand, by which time the nurse had moved the table over the bed and put the coffee on it for me. I was thinking that having been awakened by the morning nurse with a cup of coffee that the clinic was even more first class than I had thought it was when it came to patient care and comfort. I was pleased that I didnít have to jump out of bed and go to the restroom like I used to have to do before I started wearing a catheter and bag to bed at night. I leisurely drank my coffee before I decided to get on with my morning routine. After sliding the table out of the way I began moving myself toward the side of the bed toward my wheelchair and slid myself into it. I had not moved my legs over toward the middle of the bed and my right leg which was, apparently, very close to the edge of the bed fell off onto the floor. At first I thought, Ďoh, that is going to hurtí, before I remembered that I have no feeling in my legs and never will again. I giggled at myself for that as I reached down to put my foot onto the footrest; once again my foot was turned at an odd angle that would have been impossible previously without a whole lot of pain. After placing my right foot on the footrest I pulled my left leg off of the bed and placed its foot on the footrest, reached for my night bag and unhooked it from the bed placing it on my lap. I rolled into the bathroom to begin my morning routine.
My morning routine taken care of, I decided that I would get dressed rather than staying in my nightgown for the whole day. I rolled over to the closet and with a bit of effort was able to get my overnight case and put it on my lap, remembering that I no longer had any muscle control in my lower trunk I was careful to hold on to the chair as I reached for the overnight case. I had learned during the months I was temporarily paralyzed that it was easier to dress on the bed than in my chair so I rolled to the bed and after placing my overnight case on the bed I transferred over onto it. I had packed a pair of shorts and a frilly top with thin straps over the shoulder so I decided that I would wear that today and save the other outfit that I had brought to go home in tomorrow. I also got out a bra and panties and a pair of flip-flops with a wedge heel; after closing the case I began to get into my clothes. I started by disconnecting my bag and putting a clamp on the end of the catheter tube, I then picked up my right foot and slid the panties over it and did the same with the left. After working them up as high as I could I began to roll to one side and then to the other pulling them up until I had them all the way up. My next chore was to remove my nightgown and put on my bra, that was relatively easy to do, except that I almost lost my balance a couple of times in the process. Working on balance was going to be a top priority. The top was next which I was able to accomplish without any problems and then set about getting my shorts on which required a reenactment of the panty process. Having completed getting into my clothes I transferred back to my chair and after getting settled in it I picked up my left leg and put it across my right leg so that I could put my flip-flop on it. After putting it back on the footrest I did the same with my right but rather than putting it back on the footrest I slid it over so that my legs were crossed. When I looked down at my feet I noticed that my right foot was pointing almost straight down and the flip-flop was hanging off of my toes, it made me think that when Rob saw that it would get him pretty worked up, more training for after the wedding!
I thought I would like to take a roll down the hall and back; however, as I started toward the door it opened and the nurse came it with my breakfast. What a nice breakfast it was, scrambled eggs, a couple of sausage links, a biscuit, a glass of juice and more coffee. I donít normally eat that much and when I told the nurse that she said that for the first couple of days I should eat heartily to keep my strength up and after that I could return to my normal eating habits. I didnít think I was hungry at all but the nurse also told me that I might find that the hunger sensations might not be as strong as in the past or might not even be there at all. She said that my injury was a little higher now and that this could be a result and that I would have to determine that over the next few days. If I was not feeling hunger pains I would have to be sure and eat at regular intervals to keep my system functioning correctly.
I thoroughly enjoyed my breakfast, as I cleaned up the last bite I realized that I must have been hungrier than I realized. Perhaps the nurse was right about not feeling hunger sensations, I made a mental note to pay attention to that and be sure that I was eating an appropriate amount of food.
Having finished breakfast I decided that I would take the roll down the hall as I had planned so I proceeded out into the hall. I rolled down the hall past the nursesí station, I looked down and noticed that my right leg was swinging back and forth as I pushed on the wheels of my chair, I didnít expect that much movement so easily. I turned around at the end of the hall and started back, as I was rolling along I thought that I needed to look into what kind of exercise I should be doing on a regular basis to keep fit, I was well aware that lack of exercise and getting out of shape was not a good thing for a para as it could cause numerous health problems, not to mention weight gain that would be very hard to lose. At the nursesí station I discussed this with my morning nurse who said that she would call the physical therapy center and arrange for me to visit with them and work out an appropriate plan for my needs. As I rolled on down the hall to the other end she called and they said to send me on down to them and they would get me started right away.
When I got back to the nursesí station she told me that I could go down to PT and they would be happy to work with me. She said that they would have me doing some of the exercises that they recommended and show me how to use the machines that would be the best for me. She started to give me directions to PT; however, I told her that I knew where it was and headed off the meet with the PT folks and get an exercise routine put together.
Upon arriving at PT, a girl about my age rolled up to me and introduced herself as Janice and invited me to visit with her in her office before we got started with some actual exercise. We had a nice visit; she told me that she had read my file which had been sent to them so that they could be ready to design a PT plan for me as Dr. Hamilton had indicated I needed. She said that exercise was part of the PT plan. She told me I had asked the question before she had a chance to visit me in my room which she had planned on doing later in the morning.
We discussed our injury levels, which it turns out, are at almost the same height. She is one vertebra higher than I am; her injury was acquired in an auto accident when she was in her early teens. Already very much into fitness and sports she decided to investigate whether she would be able to be a physical therapist with the intent of working with newly injured SCI patients, which as it turns out she was able to do. After the accident she was treated by Dr. John Cook who is Dr. Jan Cookís husband and Dr. Nancy Hamilton. After she completed her training she contacted Dr. Cook to see if there was a possibility of her working in the clinic. After some discussions to see how she felt about BIID, she said that she didnít understand BIID since she really didnít know much about it but that she had no issue with helping people like me that wanted to be paralyzed even though she had acquired her injury from an accident. She told me that since she had been with the clinic and had talked with many of the staff and other patients that she had come to sympathize with their desires and agreed that they deserved to have treatment just like the transgendered were able to have re-assignment surgery. If the transgendered could have surgery why not those who suffer from BIID?
Janice explained the physical needs of a para to me, explaining that it was important for me to have a regular routine of exercise to remain fit and healthy. She asked me about my balance and if I needed to work on that, she said that she noted in my file that I was paralyzed higher than I had been during my test period and knew that balance was probably going to be an issue. I responded that I felt I needed some work there because I had noticed that I had definite balance issues so wanted to spend time working on that. She explained that the PT regimen would begin with balance training and include standing, movement of the legs and hips as well as exercise of the upper body and arms.
We went into the training room where she had me transfer to a low table; she moved a frame in front of me that would catch me if I fell too far forward. She explained that she used this since she was not able to catch me safely from her chair so the frame would do it. She also transferred to the table and began showing me how to balance and had me practicing. After we finished the balance routines she explained the various machines that I could use, she then helped me to use each of them so that I could get an idea of how to properly use them to get the most benefit from them. She said that as I used each machine they would insure that I was using it correctly.
The first was a standing frame, this is a machine that has a seat that I had to transfer to and place my feet in special foot rests with Velcro straps to hold them in place. There are knee pad devices that I had to adjust so that as I stood my knees would be held from bending forward. A handle on the side when moved back and forth causes the seat to rise and pushes me into a standing position, the seat holding me from the rear and the knee pads keeping my floppy legs in place. It felt rather funny to be standing up, I had not done that for months, and I was a little dizzy for a few moments. Janice showed me how this particular unit could be moved by turning a couple of wheels at the top of it allowing the user to move about and do things that required being in a standing position. She also explained that there were electric wheelchairs that had the standing feature as well as motorized versions of this unit. She said that she prefers the electric wheelchair for a couple of reasons and actually has one at home. She explained that the one she has and likes the best has multiple features that are beneficial for a para. Hers allows her to change her position by reclining the chair or just the back and/or raising the legs, this is similar to doing pressure lifts to change the position in the seat of the chair to help minimize the chance of pressure sores; in fact it is actually better. The chair also has the ability to raise the seat up allowing her to reach things that are higher than she can reach and also has the standing feature which she uses at home quite a lot so she can reach things she canít reach while seated. As a result, she normally uses the electric chair at home and usually has it in the standing position to do much of her housework which more than meets her standing needs.
Janice then took me to what she called an FES Bike. Functional Electrical Stimulation (FES) is a system where the muscles of the legs are stimulated by small electrical impulses which then cause the legs to pedal the bike. This is very good for the leg muscles and circulation in the legs. This particular model of FES Bike is designed to be used from a wheelchair so transfer onto it is not necessary.
Following the FES Bike demonstration Janice showed me the machines that I could use for upper body workout. She explained that it was important to keep the upper body and arms in good condition and with appropriate strength or one could have problems with the shoulders and not be able to push the wheels of a manual chair requiring use of an electric chair.
After the demonstrations Janice explained that I should start off slowly with an exercise routine and build up over time. She also said that she would recommend that I not begin serious exercise for about a week. I asked her for information about the cost of these machines and where I could have access to them if I could not afford to purchase some or all of them. Her answer was totally unexpected, she said that I should follow her to another room next to the PT training room which I did. There she pointed out that there were several of each of the machines we had been working with and told me that I was to get one of each for my personal use just as soon as I had a place to put them. She also told me that I was to be measured for a new wheelchair which I could use as a backup or primary chair at my discretion, the important thing was that I needed to have a second chair in case one needed service or repair and that the same measurements would be used for the electric chair that I would also get. Of course I knew about the need for a backup chair since I had so often used Annís when she lived next door to me. Rob and I had already discussed my need for a second chair and had planned on searching for one after we settled into the house.
I looked at her and couldnít believe my ears; she smiled and then explained that one of the benefactors of the clinic was a man that owned a very large medical equipment distributing company. He not only donates large sums to the clinicís research programs but provides medical equipment for each patient that is treated. The underlying reason for his generosity is that his daughter suffered from BIID and was treated at the clinic. He is committed to the idea that this research should continue and that eventually treatment should be available to all suffers of BIID. Wow, this was totally unexpected but a very nice surprise.
We talked for a few more minutes, then she told me that I should probably head back to my room as it was just about lunchtime and I certainly didnít want to miss any meals at this point in my recovery. She gave me a hug and told me that she would setup a series of appointments with me to further familiarize me with the equipment prior to my receiving my own equipment to setup at home and to come by anytime if I had questions about the equipment.
That done I headed back to my room, arriving just as the lunch trays were coming down the hall. Right behind the lunch trays was Rob coming up to visit me; he had a beautiful bouquet of flowers for me. After entering my room and putting the flowers on a table, he reached down and picked me up and hugged me and gave me a passionate kiss. While still holding me he said that he can hardly wait for our wedding day so that he can really get his hands on me, all of me! Wow, I canít wait to get my hands on him either! Rob sat me back in my chair and when he noticed that both of my feet were askew, one on the footrest and the other on the floor I thought he was going blow a fuse. He knelt down in front of me and lovingly arranged my feet on the footrest after planting a kiss on each one. He is such a loving and caring guy, I am soo lucky to have found him.
The nurse entered my room with my lunch tray and upon seeing Rob there asked if he would like to have lunch with me. Rob said he would but had not planned on having lunch, he had only stopped by to visit for a few minutes. She said that was not a problem, that if he would like to join me for lunch she would get him a tray. He thanked her and said that would be great since it would allow him to spend a little more time with me. She brought in another tray and we had lunch together.
After we had eaten, Rob had to leave to go back to work. I decided that I was a little tired and decided to take a nap. I transferred to the bed and was soon asleep.
I woke up about two hours later and decided that I should probably get a little more exercise so I transferred back to my chair and headed out to the hall. As I passed the nursesí station the day nurse stopped me and told me that the occupational therapist had called and wanted me to stop by PT to be measured for my new chair. She said that I could drop by anytime that was convenient.
Not having anything special to do I headed toward PT. When I arrived I found the OT in her office, she invited me in and introduced herself as Betty. I noticed that she had a body powered hook on her right arm which she was missing below the elbow. I asked her if all of the people that worked at the clinic were disabled in some form and she said that not all were but probably about ĺ were. She said that she had her right arm removed about 4Ē below her elbow about a year ago and was very happy with her amputation. She went on to tell me that she was right handed and chose to have the right arm amputated because she felt it would be more of a challenge and more satisfying as she mastered doing things left handed and with her hooks. She said that she had taught herself to write left handed but did most of her writing with her hooks because it was such a challenge to do so.
She then explained that she needed to get measurements for a new chair and that I needed to pick out the color and accessories. That said, she took me to the room where they had a number of wheelchairs available for trial. She had me transfer to a table so that she could more easily take the measurements she needed. First she measured the width of my hips, explaining that it was important to have the right width of the seat so that I would be held in the proper position. If the seat was too wide it would be possible to not sit straight and if too narrow pressure could be put on my hips that would cause sores to develop. Following the width measurement she had me hold my legs up at a 90 degree angle so she could get an accurate measurement of the distance from the back to the front of the seat. Again, it is important for the seat to be the right depth so that my weight would be distributed properly. The last measurement she took was from my knees to my heels so that the footrests would be set at the proper height.
Once she had gotten all of the measurements she needed she selected a couple of the chairs that had a taller frame because of my height and brought them over for me to try out. She told me that I could choose the model I liked best, the type of cushion, the color and the type of wheels, both front and rear.
Betty walked over to a cabinet and got three different types of cushions, she told me that these were the ones that she would recommend for my use. She explained the differences in each of them and ended up telling me that she would recommend one of them as the best for my use. Knowing a little about cushions I agreed that she had selected the one that I thought was best for me and that I would like to have that one.
She then showed me the various options for the rear wheels; I decided that I wanted the wheels that had the larger hand rims because I had read that they were easier to push. She then showed me the options on front wheels and I selected the ones that I wanted. We then discussed the models that were available and I chose one that I really liked, it has a narrow footplate which would help to keep my ankles from turning over because it has bars that run from the seat to the foot rests that would prevent much side to side movement of my legs and a solid plate rather than the bar style. I like this type because when I wear heels they will be on the plate rather than being hung over the bars which I donít particularly like. The chair, like the one I have, is a ridged frame model made with titanium which makes it very light and easy to get into a car. Next I looked at the color options and chose one that was mostly black with pink accents, I didnít want to choose an all pink one since my current chair is all pink.
After I had made all of the choices I wanted, Betty said she would see if they had one like that in stock and went into the storage room to check. As luck would have it she came back with exactly the chair I had chosen. After taking it out of the box she went back to the store room and found the wheels that I wanted. Betty assembled the chair and adjusted the footrest height, she put the cushion I had selected on the seat and moved it into place for me to transfer to it. After transferring I rolled around the room a bit to try it out, the rims felt a little weird but I knew that once I had used them for a while they would feel fine. A detachable seatbelt came with the chair, Betty showed me how to attach and detach it and how to put it behind the chair back so that it is out of the way but available if needed. I would need to use it sometimes because of the height of my injury not giving me any control of my lower back which makes it easier for me to fall out of the chair.
I was amazed how well Betty did all that she did with one hand and a set of hooks; she had obviously mastered the use of her hooks. I noticed that as she took the measurements and other information about my new chair she wrote everything down with her hooks. When I had a chance to look at what she had written I was totally impressed with her beautiful handwriting.
I was very happy with my new chair, I felt that I would probably use it as my primary chair once I had gotten used to the new hand rims. Betty told me that I was welcome to take the chair now and that she would have my old chair delivered to my room in a little while. I happily rolled back toward my room, taking a few runs up and down the hall before going into my room.
I had not been back long when Dr. Hamilton crutched into my room. She told me that she was there to see how I was doing. She told me that she was impressed with all of the things I had done already that day, she said that she had never had a patient that had the surgery I had doing nearly as much on the day after surgery. She asked me to lean forward so that she could check the incision on my back. This was no problem as I folded completely with my chest lying on my knees, the only problem was that I had to catch myself or I would have rolled right out of the chair. Dr. Hamilton chuckled and told me that I needed to be careful when leaning forward and be sure that I was holding on to something or I would find myself with a nasty headache and possibly a concussion once I was completely on the floor. Realizing that she was right I made a mental note to be more careful.
Dr. Hamilton pulled my top up far enough to see the incision point, she removed the bandage and after looking at it carefully she put a Band-Aid over the site and pulled my top back down. She told me I could sit up, which I did by pushing myself up with my arms. After I had gotten situated in an upright seated position Dr. Hamilton smiled at me and asked if I was ready to go home. I told her I certainly was but was not expecting to do so until the next day at the earliest.
Dr. Hamilton said that I was doing so well and that the incision was completely sealed so there was no reason to keep me in the clinic any longer. She told me that I could get my things ready and call my parents to come and get me. She said that in the mean time she would prepare the forms for me to be released and would get the paperwork that she had told me she would give me on discharge; it was all ready and sitting on her desk in her office. With that she crutched out of the room to get everything ready.
I called my mom and told her that I was being released and would need for someone to pick me up. She told me that she and my dad were planning to be in for a visit in about an hour and if that was soon enough they would see me then. I told her that was perfect and suggested that they come in my car so that they could park in the disabled spaces near the door, she said that was a good idea and they would do that. I called Rob to let him know that I was being sprung; he was very excited about it and said that he would see me at home as soon as he could get away from work.
Now that I had notified all concerned I set about getting ready to go home. I retrieved my overnight case from the closet and after placing it on the bed I transferred myself onto it. I began the process of removing the clothes I was wearing and putting on the outfit I was going home in. That took me about a half hour to accomplish. I was back in my chair with my overnight case packed with my clothes and toiletries when mom and dad walked into the room followed by Dr. Hamilton.
The first thing that Dr. Hamilton did was give me the release forms for me to sign. Following that she gave me the paperwork for the permanent tags for my car and for Robís after we were married. She also gave me some permanent hang tags to be used when I was in someone elseís car. She gave me a few instructions about taking care of the incision for the next couple of days. She then gave me some forms for PT and told me that I should call them and setup times for me to come in and do my PT. She told me that I should call her office and get an appointment to see her in a week and that after that she would probably see me next at the wedding.
With the paperwork done and the necessary instructions given Dr. Hamilton gave me a hug and said that she was really happy that she was able to help me achieve my dream. She then crutched off to see some other patients.
Mom noticed my new chair and commented on it. I told them about the equipment that I was to receive, including this chair. The rest of the equipment would be delivered once Rob and I were married and had moved into our house. We gathered my things, dad put my overnight case on the seat of my old chair and we left the room. We stopped by the business office and headed to the parking lot.
My car was parked close to the door, I told dad that I would like to drive home; he said he was happy to let me because he didnít like driving my car with the hand-controls. Although the pedals were accessible, he didnít feel comfortable with the control arms that attached to the brake and gas pedals.
I transferred into my car, dad was putting my old chair in the trunk and told me that he would take care of my new chair and put it in the back seat which he did. After he had put the chair in the back seat behind me I realized how stranded I now was not being able to easily get to my chair by myself, it really drove home how dependent I am on having my chair. It was a little frightening and a little exhilarating at the same time, this is exactly how I wanted and needed to be.
As I was pulling into the driveway Rob drove up, dad asked him to get my chair out of the back seat while he unloaded the one in the trunk. Instead of doing that Rob picked me up out of the car and carried me into the house giving me kisses along the way. I was in heaven until he put me down on a chair and once again I realized that I was stranded until someone brought me a chair. Rob said he would get my chair and started out the door as mom and dad came in with both chairs. Mom put my new chair next to me so that I could transfer into it. As I did my transfer my feet drug across from the where they were toward the chair, because of the high heels I was wearing they were not very stable and both of them flopped over on their sides, Rob notice this and I could see his eyes light up as he watched.
Mom said that she would go fix something for dinner and she left for the kitchen, dad said he had some work to do in his office and he headed off to do that, leaving Rob and I to spend some time together. I transferred to the sofa next to him and we visited for a little while; he asked me if I was truly as happy as I looked. I told him that I really was, that for the first time that I could remember I felt totally right and comfortable with myself. He said that he had guessed that because I was positively radiant and more beautiful than he had ever seen. (Flattery will get him everywhere, in about 2Ĺ weeks that is!) He also said that because I was so happy it made him really happy because he had come to realize that until I had the surgery I would not be the real me. He said that he had realized that even though I had been paralyzed for the entire time that he had known me, that he felt that I knew that the paralysis was only temporary and that if I didnít keep the pump filled with the medication it would wear off and I would no longer be paralyzed; however, now it was for real and there was no going back and he felt that made a huge difference in my view of myself. I thought about what he was saying and realized that he was absolutely right, I reached over and gave him a hug and a kiss and told him that I was really excited that he understood me so well. I told him that I felt that was a positive sign for our marriage because if he understood me so well, when I had difficult days, which I would, he would be able to understand what was happening and be able to support me through them.
Mom called us to dinner; she had warmed some leftovers which we made short work of. Shortly after we finished eating I told Rob that I was tired and wanted to go to bed early so after giving me a hug and a kiss he left. I gave each of my parents a hug and thanked them again for being so understanding and supportive and rolled off to my room to get ready for bed. Thirty minutes later I was in bed, had put my glasses in the drawer of the nightstand and was sound asleep.
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