Page 15 - The Bubble Trips

 

          Overall this place of rehab gave me a sense of myself in this new world, the world that held me in a different way. I have a team looking after me, nurses, therapists, doctors all the same, all communicating for my benefit. Suddenly this horrific day that has happened made me something special? Rather, specialized. I’m not sure I preferred this new me over the old me, no of course I don’t, but here I am.

 

          Among all the different therapies I was receiving was recreational therapy. This meant I had to choose one source of interests I have in the outside world. All I could think of was the bookstore. The first outing they presented to me was to Walmart… I turned that down. No way was I going to face the world “like this” for the first time in a place like that. It just wasn’t my thing and it hadn’t been before the accident either. So I waited and finally a chance to go to the bookstore came up and lo and behold I was the only one going! Next thing you know I’m heading into a little minibus with my family, brother, sister and sister-in-law. A trip to the bookstore where I managed to buy some candy that was on sale and a lap tray that might come in handy for certain therapies. I looked at books but we had puzzled out yet how I would be able to read them. We just wrote down the names of some titles.

          So that first outing I felt almost cacooned with my family around me. It didn’t seem real, no, it was very real but I was enjoying myself looking at stuff, books, candy, accessories and so on. And the people were nice to me, as if they’d all seen it before and knew exactly what to say and what to do in my presence. In fact we did run into a woman who had been a nurse. So in this city that held this huge rehab facility it was expected that one would run into plenty of people who are familiar with people like me. It was a safe place to be and this was something we realize but I don’t think I fully comprehend how much that feeling of being so protected was going to matter later on.

          And other therapy I had was concerned with leisurely activity, I chose art. Reading seemed an unlikely immediate possibility even though the bookstore outing was fun. During art therapy I learned I could paint using a mouth stick. This was a unique contraption that one held firmly in their teeth and on the other end could be attached in any number of tools, including of course paintbrushes. I was not in love with this idea but I tried. It took a few times and it was tiring, unbelievably tiring with my weakened neck muscles. I managed to paint some strokes on a piece of paper and later a terra-cotta vase. I also painted some colorful strokes on a rock to be placed in their garden along with other painted pieces from other patients. I felt both proud and ridiculous all at the same time.

          The last type of therapy I received was actually “assistive technologies” where I learned about using Dragon voice recognition and also some phone gadgets that so far have not proved themselves worthy. I was happy to learn I could communicate to the world again but it didn’t change this idea that I was living in some sort of illusion bubble. I could go out in the city because the city catered to people like me. It was easy for me to remain wrapped inside myself and feeling like the world still couldn’t see me as “me”.

Page 14 - A Little Self-Awareness

 

          It was here that I first looked in a mirror… Wow, was I not the person that got in that car that day! I'd grown to thin and my hair, normally so blonde from sun exposure, and my own doing, ha ha, had grown in so dark. That alone was shocking because I had been a natural blonde since childhood, and only recently started coloring it for thickness. Now I had the dark head of hair with blonde tips, go figure. My skin was behaving well, forever my nemesis. I'd always had problems with acne, always had skin like a teenager. But ultimately that went south again too! My hair needed to be washed, and my face needed help and I was always cold… I wore a lot of hats. It killed two birds with one stone. A couple of the nurses and techs got together to try and wash my hair from the back of the bed… I couldn't yet take showers…

          I battled this odd curse of paralysis on many fronts. Forming a new image of self does not happen quickly or easily. Things are done in bits and pieces. I finally got a haircut by a good Samaritan that my neighbor across the hall knew of. I had surgical glue stuck in my head here from where my scalp was cut severely. The staples were gone, but that glue, that glue! This wonderful hairdresser had the patience to cut my hair and work out that glue with conditioning sprays and tireless fingers… The whole thing took about two hours. According to one family member, I now looked like a 12-year-old boy! My hair was short, the glue was gone and I felt a little better, though not myself. I was some sort of strange version of “me” that I had not met yet.

          There were other challenges aside from looking like myself, there was lack of sleep, constant nausea, new pain I’d never known before. Insomnia was always a battle and finding the right concoction for sleep seemed like a constant endeavor. Not to mention having visits throughout the night for various things like emptying my catheter bag. Every morning I was nauseous before taking my medications and often had to spin up gobs of mucus before I could take them. Other times of the day it would just hit me and I would be sick to my stomach albeit minimal amounts. It was finally decided that a certain drug I was taking was making me sick, and antidepressant I had never given permission to be put on! That was back at trauma center where they made that executive decision. The same people who were so impressed with my attitude… But I guess expectations are that everyone crashes eventually. The pain, that was physical and something I’d never thought I could endure.

          Severe pain is a concept I’ve had little intimate knowledge of throughout my life. So when rehab started and my body started responding, mostly my left bicep and shoulder, a monster was awakened! I learned about trigger points in deep muscle tissue and I learned why people get cortisone shots, though I did not. My OT managed to hit a spot in my back one day while we were working in the gym, that sent me through the roof and beyond. The tears started… A flash of pain so intense I could only see white light for a split second. My OT very calmly finished our session without responding to my yelping. The pain subsided as she knew it would and she explained to me what has happened and why. I respected her for that and it was in her training obviously not to crumble just because her patient did, ha ha. In that moment it never occurred to me how I looked because everyone in the gym was going through their own struggle and I understood their looks. My image of myself was going through a metamorphosis. One moment I worried about my face, the next I was feeling tough because I had endured such pain. Who am I now… A process that is still ongoing, or should I say a question

Page 13 - Minor Milestone

 

            Something I haven't mentioned much, and here I digress… I wore a neck brace, a a brace to pick from my tiny neck. It allowed for my ventilator to attach to the trech in the front via a gap. I'm sure from the outside it looked like some sort of medieval contraption. From my vantage point it was uncomfortable and the itch in the back of my head was unbearable at most, at the least it was ever the present. It just became a part of me after a while. I slept with this thing on and I ate with this thing on. And every day I got a brief moment of relief when it was taken ever so carefully off my neck. In order to change the little strap that held the trech in place.

 

            Such were my days as I followed my new routine and gradually met others with the same or similar spinal afflictions. I met a woman who had children who'd been in a car accident, whose husband dutifully stood by her, and brought the kids for visits. I met this one girl who'd lost her sister and barely spoke the language. I met a young boy whose life was only saved by the fact that his MRSA virus attacked an injury to his back. He was paralyzed from the chest down and I believe watching me might have helped him snap out of his own depression. You see, he could use his arms. I saw a lot of people without knowing their stories, but the injuries were obvious, just like mine, or paraplegic. I didn't know individual stories unless I was told directly, but my therapists indirectly discussed the different injuries and how they were sustained. It was mostly men, and it was mostly freak accidents or sports injuries. The few women that were there were like me, car accidents. I saw a lot of neck braces and a lot of trech's.

            I imagine there were probably just as many itchy necks out there, I never asked. What I understood was that I was certainly not alone. This was a very different feeling than what I’d had in the trauma center. Although the nurses in the trauma unit were more than capable of making me feel comfortable and even brought out some smiles and laughs, I was still alone in my injury. I now had comrades, even if most of them were too traumatized to be sociable. To be fair, I was too much of a loner to be sociable with the sociable crowd. I wanted to do my thing. Get it done and find a way to get this trech out of my neck and breathe normally! But alas, I got to know people through my classes and through my neighbors in the hallways. Those people made lasting impression on me because their struggles seemed so insurmountable to me. They made me forget about my own struggle which was also a battle. The little things I focused on like a nagging itch were a way to deflect from the larger issues like the reason I wore a brace to begin with. I knew why I was going through the motions and I knew full well what my goal was, but I kept looking away from myself so I could smile more easily.

            One long weekend my aunt/godmother visited me and it just so happened the Dr. visited me on a day she was there and announced it was time to take the brace off. This was a historical moment, and it was a thrill to me that she was there. But the most exciting thing about losing that brace was getting to that. itch! My aunt had wonderful long nails and proceeded to scratch my neck and discovered a piece of surgical tape that had been stuck, left behind, as it were, creating this ominous itchiness. With those wonderful nails she got that tape off, and my neck was finally relieved. A small step I know, but everything I experienced in the way of progress was a huge milestone for me. Oh yes, I slept much better too. Without that thing around my neck.

Page 12 - New Expectations

            Once the holiday passed no time was wasted. My schedule was given to me with the explanation that over time it would increase in activity. I had therapy in every category, OT and PT, recreational, assistive technology, special interests. In my case the special interests were arts and books. But all bases were covered in this form of rehabilitation. I had to complete every class before my departure and I had to have three hours of combined PT and OT. If I miss something for any reason, I made it up. But that was also my choice. There were others that sat in their rooms and refused any kind of therapy. I remember feeling sad for other people when I wheeled around. I guess that was always in my nature to want to help others, and it was hard for me to put myself in the same category. But there I was with my schedule and my bland breakfasts and my tilted chair, doing my best to keep up.

            During my stay in the area, they experienced one of their coldest winters, complete with snow on Christmas which they hadn't had in many years. Now, if you've ever been in a hospital for an extended period of time you’ll know they are kept cool and dry to stave off harmful bacteria. The same applies to a rehab facility in that meant I was freezing most of the time. Another odd side effect of the spinal injury in the C-spine region… Your thermostat gets turned upside down and you default to cold. I saw many other patients wearing hats or towels over their heads. I wound up with a nice collection of winter hats, ha ha. On a rare day I could get away with just my T-shirt and sweatpants. But most days, it was a hat and some sort of sweatshirt.

            And so it was, every day learning to navigate with this loaned electronic chair, operated by sip and puff technology. Every day a little closer to learning to live in this new body… Every day slowly weaning off the ventilator. I was at a point where I used it at night and during the day had just my trech in for short bursts of time while I ventured out of my room. As I tolerated it, there were longer bursts, until finally I was able to leave that place with just a Band-Aid over some gauze on my throat. But I’m not there quite yet in my story, I digress… My days begun with medications, yet my nights were not exactly sleep filled and peaceful. My ventilator was checked around midnight every night, vitals were checked, catheter bag was emptied… What sleep. I ask… And then finally the medications, breakfast, bed bath. Initially I did not take showers as I didn’t have the proper chair. Amazingly, it was one tech or CNA, as is the proper term that got me dressed. But they were referred to as techs. Everyone I encountered was amazing for that matter… And so it was, an amazing place to be.

            The first important matter of business and rehab is to figure out exactly what there is to be rehabilitated in the scope of this injured frame. Turns out mine begun with my left shoulder and bicep… Still my strongest areas today. But not the only ones! Never, never say never because you never know. What started in this place was only the beginning for me. No one here nor at the trauma center ever told me what I could or would not be doing, no one said what to expect. So I chose to expect. Everything.

Page 11 - A Life More Organized

 

            This new experience was going to take getting used to. I had a setback to my speaking ability because before I was allowed to use the speaking valve again, I had to be evaluated on the ventilator. Talk about frustrating! It was only a couple days and I got through it begrudgingly enough. There was so much more going on around me in this new place that I quickly forgot about any inconvenience. However, It was sort of rough timing that I happen to arrive only the day before Thanksgiving! Things were quiet, people were off work and we had to wait… For what we weren't quite sure.

            Turns out I waited for the driest most bland turkey dinner I'd ever had! I think perhaps dessert may have been better but I can't remember. I know that my family went out and perhaps had burgers that day. I changed rooms after a couple of days and I was introduced to what would become one of my most popular modes of quick transport, the Hoyer lift. Here the main gear was bracketed to the ceiling as it was a fancy electronic lift and the piece came down with a tug so that I could be strapped in a sling and moved. It was not graceful and it still isn't! And except for the cheesecake the food never got better either. My family cooked in a separate apartment and brought me relief as often as possible for dinner or went to a local market and picked up my favorite, salmon and tomato bisque. The food in-house while meant for nutrition, was not going to help me gain the weight I'd lost being tube fed. So my bony ass was always in jeopardy of falling through the sling as they Hoyer me from bed to chair and back.

            Oh yes, the chair! One of the first things that they did was get me a suitable electronically operated wheelchair and then quickly bring me to be measured for my wheelchair. For the next two months this was the way my world would run, everything on a schedule, organized, like clockwork. I was assigned a doctor, a physiatrist that would oversee every facet of my rehab. I would have a team including my nurses and therapists that always worked with me and therefore communicated with each other. I was assigned classes to learn about my particular form of spinal injury. My family also had to take classes, essentially the same ones but also from the caregivers perspective. So now I was suddenly eating and rolling around as an independent "sort of" human being for the first time since the accident. All of this did not come together neatly mind you, there was a huge learning curve for me and my family. But suddenly I was out of the woods of trauma and into the light of rehab. But wow!!

            One of the challenges I faced being back in a sitting position was vertigo. It is not easy going from lying down to sitting up straight after so long. Is also a direct result of the damage to my spinal column that I would experience this vertigo. For a long time I did not set up directly straight but had to tilt my chair back in order not to feel dizzy. This was all under my control with the marvel of "sip and puff" technology. This is how I controlled my chair, my TV and called my nurse. There was also a handy gadget at the side of my bed meant to catch all the stray phlegm I coughed up. Gross but necessary, ha ha… Oh the joys of still being on the ventilator. But there was a system set up right away to help wean me from this beast of a contraption. No detail went unattended, yet independence was encouraged from the get go. This place did not push a patient but rather allowed that person's own desire to heal, to steer how each day proceeded. Sure some people were tougher on me, gentle in nature but tougher… But no one ever insisted I sit up straight or attend a class. If I wanted to I could set my own clock but I tried very hard to allow their own clockwork design to work for me.

Page 10 - A New Phase

 

            "Parting is such sweet sorrow" I know, ironic words to quote when leaving a place of trauma and chaos and overall negative yucky stuff. But nevertheless, I live, despite this horrible thing that's happened to me, the smile on my face was always due to the fact that I was still alive. So as I was wheeled down to a little waiting plane, heartfelt goodbyes came from all directions and tears were shed. One of my new friends, a young woman whom I bonded with inexplicably through simple knowing smiles stayed with me all the way until I boarded the plane. Of course boarding meant wheeling me on with my portable ventilator on a gurney. This was strangely okay with me. I was looking forward to the flight, the outside air hitting my face for the first time, the movement of the plane. I remember the sun, for the first time in two months, feeling the sun on my face. Simple things become monumental. My boyfriend accompanied me on that flight which was not a simple thing for him at all, but monumental for both of us. Believe it or not I enjoyed my flight to the rehab unit I would be at for the next two months. I even slept a little.

            One of the reasons I landed where I did was because this was one of the few places that would take me as a rehab patient while still connected to a ventilator. Part of my rehab was to be getting me off that vent. This was a world apart from where I had just been. Upon arriving I was met by my aunt/godmother and my brother and sister soon followed. My boyfriend stayed by my side until he was settled in to the long journey back home alone in a rental car. People were there for me, people made sacrifices. I know I'm one of the lucky ones but there was still some fear and trepidation as to what was coming next.

            Next turned out to be the big room with some new bells and whistles that I could never even have imagined. First there was the little TV that rotated on a pedestal so it could be positioned right over my bed and I operated it myself. My first lesson in what was called "sip and puff" technology. By breathing into a tube or gently sipping from the tube I could turn the TV on and off and change channels. This was independence for the first time since the accident. This was huge. I knew then that this place was far and away the absolute right place for me to be. I had struggles ahead, but hey, I now had TV! The next thing I never could have imagined was being given a swallow test by way of feeding me a few bites of pudding, a cracker and something to drink. Presto, I was now allowed to eat solid food! Yes, all the time in the trauma unit I was on a feeding tube, not pleasant and never to be repeated. Having a ventilator means sacrificing a lot more than breathing on your own. But things were going to change here, for the better.

Page 9 - Parting from Chaos…

 

            Before parting completely with my experience in ICU, it's important to look back on some of the more positive elements. It may seem strange to make such a statement but sometimes amazing things come from tragic events, or because of. New friends appear that wrap you in a bubble of protection. One such friend came to me by way of old family friends that I never knew about because they were on the side of my brother-in-law. She took an interest and somehow we connected and through her therapies I was able to relax in quiet moments and find some peace among the chaos.

            Other friends just seem to evolve out of the relationships between myself and the staff. I can't explain how these things happen but I know I got my toenails painted and special visits just to say hello they were passing by. Somehow I managed to share stories about life and love in general with some of the evening nurses during the less hectic times at night. Other times because of where my room was positioned, I shared in the collective chaos in my heart went out to so many patients who suffered so many different traumas. Something in me wanted to help. There are parts of you that don't change, just because you are changed physically. Love is love, it shouldn't stop and I can explain why I wasn't mourning my own self, except that there was so much love. It surrounded me, so I was able to feel it for others I'd never met.

            Another amazing thing happened between myself and my very best friend from childhood. As fate would have it though we grew up in another state we both landed in the south within a couple hours of each other. She came to me and through her a pebble was thrown out into the art community that she is a part of. Support came to me in waves as the ripples grew and cards of original art of all kinds started to fill up my walls. This not to be outdone by cards from other friends and family! My room became a sanctuary. All I had to do was look around at any given time to find the support I needed. I also had the loving support of my boyfriend, something unexpected for me anyway. This is not a situation that tends to bring people together. Paralysis and relationships… It's not a story of fairy tales. But he supported me and told me to fight and breathe and he understood me when sometimes others could not. The art of love, it comes in many forms as I found out.

 

            Upon leaving this place of dramatic recovery, one of my new friends was compelled to come with me as I exited out the building toward a small waiting plane meant to take me to a rehab center. She was one of those who smile was infectious, one of those that just connected and was barely a word spoke between us we became friends. She held back the tears but could see in her face how hard she tried. This was one of many miracles that my chaos brought about, the people they came together to help me point in the right direction to continue healing. For as much hard work, sweat and tears that went into getting me into the right rehab center, there were equal amounts of smiles and laughter and connections made. I would not wish this journey repeated nor would I wish to give back any of the beautiful people who smiles and friendships I gained because of it.