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.

Page 8 - Communication

 

 

          Communication became of the utmost importance. This is especially true when you're tethered to a breathing machine, with no mobility and no device to call for help when needed. It became both comical and tragic and could change in an instant to either of these. Lip reading was the first hurdle and then came the apparatus that completely altered my state by allowing me to speak!

 

In the very beginning, right after surgery when I saw my sister's face for the first time I was able to speak. I don't know how I sounded, if I muttered, if I spoke… But I said "I'm going to get the f*ck out of here" and that was that. I don't recall any speech after that. If I did, it was lip movement because the ventilator came very shortly after I was intubated. Lip reading was comical and frustrating endeavor for both myself, those trying to care for me, and family and friends. I can recall so many names of my nurses but it would do them a great disservice to try to name them all. Those I have forgotten I can still see their faces. One of those in particular described herself as clumsy but she was nothing of the sort when being a nurse. The only clumsiness we shared collectively because she could not understand the words I mouthed. Mostly we laughed about it but it was definitely frustrating on both ends. There were others that seem to be able to interpret entire sentences without a hitch. I don't know how anyone gets good at it except to say I'm obviously not the only patient that was ever in a position to have to be lip read.

 

In the case of family and friends, everyone did their best. There's never any telling who's going to be good with such tasks. And of course I don't know how good I was at mouthing words. I was told not to over enunciate because it made lip breathing more difficult. Go figure. Then one day because my breathing was growing a little bit better I was told there was a device that could be attached to my trech that would allow me to voice words as I breathed out. I could only wear it for short periods of time but when family and friends came in and I was able to say their names… The look on their faces was beautiful to me. It was emotional on all of us, hearing my voice which I imagine was only a whisper as a point. But it was no less than a small miracle to be able to talk to the people I love once again.

Page 7 - Just Keep Breathing

 

 

         The over all theme, while obvious, can get lost in the details of each day spent trying to live. You might say I had a team overseeing my care, but when it came to the ventilator in my lungs and how to proceed, there seemed to be three refs with different plays in mind. The only agreement was that the fluid in my lunges had to come out! With this detail so prevalent in my day to day, such as whenever I rolled to one side or the other or even was laid back in a straight position, I felt fluid move and often had to cough it up. A few times it came down to a critical point wherein I had to have something called a bronchoscopy. Fun fun. It was most affectionately referred to as a "Bronc", by some. I did not necessarily look forward to this "procedure" as it involved going directly into my lungs via my trache with the suction device and a tiny camera. Of course the good news for me was that I was put under and I quite look forward to the countdown to temporary oblivion and then waking up a couple hours later with no memory of the procedure and just a nice mellow glow in my head.

          It was not really in the grand plan to have to wean me off the ventilator. It was doing a fine job but I certainly didn't want to be tethered to a breathing machine. The pulmonary team I had did their best but each of the three had their own specific way of doing the weaning. It was very uncomfortable for me to have my orders changed each time one of them was on duty. This became more and more difficult and it seemed like I had many days of struggling. In truth I don't know how long it went on before I finally made the firm demand that I liked one Doctor's method and it was my decision as the patient to stick with that one method. How I was able to make demands will be described later… But there is a very pivotal moment between my brother and I during all of this. He had come into the hospital feeling very frustrated and wanting to be angry at me for resisting, as he thought, getting off the vent. At the time he arrived it just so happened that my breathing had become very labored and I had asked for a respiratory therapist but it had been nearly 45 min. that I lay there on my side very scared because I could not breathe. As my brother rounded the corner to my room I began to cry, seeing him. I knew finally I might be able to get some help. When he saw my tears, of course his grand plan to inspire me with anger, just melted away. I told him what had happened and his anger turned toward the staff so off he went looking for quick help. I don't recall how long it took but I know he stayed with me and realized that I was actually suffering. But there was no mistake I wanted to breathe on my own eventually. It was not an easy process.

 

          In the midst of all this, the bright light was that there was an apparatus that could be attached with the mouthpiece that allowed me to speak. Otherwise people had to get used to lip reading and some were pretty good at it including my brother. But when I was able to speak however weakly, I just could not get enough in!

Page 6 - The Mire

 

In the mire of the healing  process , and that is what it is with such a severe injury, a mire to wade through, there are still moments when a smile or even laugh is permitted. But it is like a journey of extremes. You cannot count on anything happening aside from the routine set in place, dictated by your particular "needs".

One moment in particular that stands out in the "laugh" arena is a day probably later in my stay at the trauma unit wherein I found myself sitting up in bed with my chin having dropped down below the chin rest in my neck brace covering my face up to my nose. Along with that discomfort, since I couldn't get my chin back in it's right position, there was the issue of the washcloth that had been laying across my forehead to cool a slight fever, that had slipped down over my eyes. Picture if you will a medieval knight, sort of, with his face shield down. I sat this way alone in my room knowing that the only possible rescue was if someone walked by and happened to notice me sitting there speechless and blind except for the sliver of vision I had where I could just see people's bottom half as they passed by my door. Fortunately it was not long before the very nurse who had been assigned to me that day and set me up for "comfort" in this way, came hurriedly into the room exclaiming what a terrible nurse she was, only to find me laughing as she freed my face. This of course made her laugh both with relief and the humor we both saw without having to speak. That was Kelly, one of the many wonderful nurses I had.

These little moments I cherished. Others live in my memory because of the horror. My lungs were a constant source of concern as they battled fluid and the onset of pneumonia. Breathing was above all things, my constant adversary at the gambling table of life or death. In one particular and probable, as I look back, close call, my lungs had to be drained manually by way of needle and drain tube. This could only be done by wheeling me down to a CT scan so that the procedure could be done with precise visual input. This was explained to me again by that ever protective respiratory therapist in a rather hurried/urgent fashion. I understood that while I was being asked if I would be able to do this, I really didn't have any choice. I had to be detached from my ventilator and brought down to the CT room with a manual vent in the backup of the breathing bag which is used to manually pump air into the lungs in an emergency situation. Off we went and I was further instructed that I would need to be on my side for a period of time. Whether or not this would be comfortable seem to be a moot point. This thing had to happen, whether or not I was comfortable but it was also critical that my breathing stay as steady as possible. In the scan, on my side, there was immediate vertigo and in my panic my oxygen plummeted in the bag came out. The entire process was one of panic and vertigo and tears and ultimately I came to the conclusion that it was probably because of the position I was in the car before I was rescued. I attributed my fear to that and for that my respiratory therapist was extremely moved and apologetic. I know now, while that may be still be true, the injury I suffered also made my ability to gauge and subsequently adjust to my position in space, a sickeningly impossible task in the early days of recovery.

So this was the mire I trudge through both physically and mentally. I do not want it to be lost on any readers that I write from my own experiences for recognition… I write to help bring understanding and compassion for those others who have had to trudge the mire.