Page 17 - A World Unknown

 

          Coming home was an experience… Someone at Shepherd who used to be a patient but was now a volunteer patient supporter made the comment to my brother "going home you will feel like a tsunami hit". He could not have been more accurate. We thought we knew how to handle everything and indeed we had good teachers and good instructions, but that is not all one needs. There is no teacher like experience. After the hurdle of our first evening home came the hurdle of adjustments for day to day living.

          At first our tasks seemed simple enough and we need only change one aspect of our day. Without the gory details I will only say this, we all have to go and my time was night at Shepherd… We wanted it to be morning, not a easy switch. After three weeks we finally managed to do what we wanted. I needed to gain weight so we indulged quite a bit and neighbors helped, friends held, local bakeries helped, ha ha. But one thing we were not prepared for was on only our third night I wound up in the ER! This would be part of the tsunami that was discussed. It was a bladder/catheter issue that we just couldn’t fix at home and of course it was 3 AM. I have to say the EMTs were nice and who exactly how to treat me and my condition, as were the hospital staff.

          Another element of being home was managing all of the things they came so easy in a well-run facility. We had everything we needed, hospital bed, Hoyer lift, the device needed to lift me from one area to another. But using a Hoyer lift at home was entirely different than it had been with the proper staff surrounding us and coaching us. And even doing it on our own at Shepherd seems simple because we were “safe”. It took us some getting used to but fortunately we ever had what we learned to be called “a floor transfer”… I’ll leave that to the imagination but I’m sure the meaning is obvious.

          I also needed to find therapy again and this was a challenge. We had home support through our local “visiting nurses Association” which also provided an element of therapy. But this was not therapy that was anywhere near on a par with therapy for spinal cord injury recovery. These were people used to working with knee replacements, hip replacement’s at stroke patients. I live in a community that is populated mostly by elderly residents or summer half-year residence who are also mostly elderly and here for surgeries. Don’t get me wrong there’s a population of younger people like myself and families. But these therapists I received in the home barely what to do with me. It was a while before I found a place to go as an outpatient. Finally there was some sort of light at the end of the therapy tunnel.

Page 16 - Looking Forward A Few Steps

 

          When last I posted I was discussing Shepherd and my journey there. I want to wind this down more quickly and say that it was intense and educational and exceedingly memorable. I received a haircut and a proper hair wash, my neck brace came off and with much struggle my trech-tube was removed only days before I left for good. The entire experience was supposed to prepare us for coming home. During my time there I found that I could move a little bit in my left shoulder and slightly in my left bicep. That in itself didn’t prepare me, or any of us for coming home.

          Coming home from Shepherd was a long journey in a rented van in a wheelchair that was way too big for me, and manual at that. We arrived home somewhere before midnight to our first catastrophe. Without going into detail we had missed our window for certain activities that I do every day and had to deal with the mess. On a good note, my cat was happy to see me albeit confused.

          We finally made it to bed probably somewhere in the wee hours. From then on it was a struggle to try to manage my care with family time in between. My “bowel program” became our nemesis until we could get it switch to a morning hour that was more suitable for everyone. This took weeks. It wasn’t fun but we got through it thanks to my family who obviously love me. To this day I don’t know if the situation were reversed how I would handle it. I know I would handle it, of course I would… But how would I ever know if I’d have the courage. I guess that’s why we are put in the situations we are put in. It’s all about what we can handle and we have the courage for.

Not so Brief Intermission

　

So after this longer than intended delay for which I do apologize, I've decided to speed through a few things to catch you up to date and make this blog into a more current read. I've had some pain and some conflict with appointments\busier weeks so I just haven't been able to get on my computer much. When I'm on my computer I'm fielding emails and trying to maintain connections. This blog has taken a back burner because I burn out before I have time to set up the next page. This little blurb is intended to bridge the gap and let folks know I have not abandoned ship and I am still intending to keep things rolling along this ocean of unpredictable tides and storms of what is a spinal cord injury. Back soon was another real "page" :-)

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.