Lists

Toroweap Overlook at the Grand Canyon

Probably the worst injury I have from my brain injury is memory loss. I can still remember things about my childhood and most of the years after that, but I cannot remember much about the five or ten years before the accident. I cannot remember anything about the work that I did in my five years at Callier Center. I cannot remember names, places, US states, cities, TV or movie actors, countries, and lots of things like that.

Through my rehab I have been learning many ways to help me remember. For instance to remember the state of Illinois, where I lived when I worked at State Farm Insurance, I can remember the city of Chicago, a city I have visited several times in my life, both from work and from family vacations (see photo above – not Chicago, but from a vacation.). And when I think of Chicago I can easily remember its state, Illinois. So when I want to remember that state I just think of Chicago. Another tool I have been using are lists. Fortunately I have been doing that most of my life.

As a child I made lists of what teachers I had for each class each year, especially after I got to junior high and high school, where I had multiple teachers each day. Like most boys – and probably girls, too – I kept lists of the people I dated or wanted to date, including when we went out, where we went and of course a rating system for each girl. At first I did this in a printed calender, but eventually bought a “little black book” to keep records of that. I don’t have that list any longer because just before Jean and I were married, I destroyed my black book.

But I kept making lists. About our vacations and the places I traveled for work, all the cars I have owned, all the places I worked, my salaries, the places I have lived, the cell phones I have owned, my bank and credit card accounts, recipes, musical instruments and stereo equipment I have owned, hurricanes I have lived through – eight, many of the people I worked with, went to school with, and from my college fraternity. And for some of these lists I kept pretty good details. For instance my list of cars also has the make, model, year manufactured, dates purchased and sold, whether they were new or used, purchased or leased, paint colors, engine size, cylinders, horse power, even the EPA estimated rating when available, where I bought it and how I disposed of it – sold, traded in, or handed down to my son Evan or my brother-in-law Bill.

Early on I used paper and pencil to make these lists, but in the 1970’s when I started working with computers, I used those to keep my lists. In the 80’s I started using personal computers and in 2003 I got my first smartphone, which I have been using ever since.

All of that was long before my brain injury, so it was easy for me to continue doing that. While I was at the Centre for Neuro Skills (CNS), even though it took me six months before I could remember enough to use my phone, I kept lists of my therapists, neuro rehab specialists, roommates, even the meds I was taking. I also made lists of thing I needed to remember like US states, countries around the world that were in the news, all my bills, my medical accounts – Blue Cross, COBRA, Medicare, Social Security, Fidelity (the holder of my five retirement funds – Oncor, John Hancock, Sabre, Nielsen, Hewlett-Packard), unemployment, and of course the ACA Marketplace (obamacare)!

So as you can see I was prepared for brain damage long before it ever happened. There area still may things I have trouble remembering, but now I have plenty of resources I created throughout my life to aid in my recovery.

Being cared for

CNS apartment kitchen

When I arrived at the Centre for Neuro Skills the afternoon of January 2, 2013, I was first taken to their resident care brain injury living facility (apartments), where I was assigned a room with Bo Lewis of Weatherford. I lived in the apartments from then until July 19, when I moved back home to Garland. There were six neuro rehabilitation specialists (NRS) who worked with us every day, around the clock. Their days started at 7:30 am, when an NRS would come on duty replacing the one who had been there overnight, since 11:30 pm. Patients attended classes at the CNS clinic begining at 9 am, 10 am and 11 am, staying until 3 pm or 4 pm, depending on their rehabilitation needs. Because I did not have any serious physical injuries,  I only went to the clinic from 11 am until 4 pm.

Some of the people I had helping me included Adriana (from Mexico), Ashleh (Irving), Bernadette (Las Vegas), Lareasha (Wichita), Lupe (Irving), Mary (Amish), Shirene (China), Amanda (Texas), Whibelle (Philippines), Kimberly (Chicago), Nicole (Jamaica) and Shantell (Lubbock). I don’t really remember all of their names and home towns, which is why I made sure to write them all down in my phone.

Usually in the mornings our NRS would make sure we woke up on time, showered, dressed, made the beds, straightened up our bedrooms and living areas, had breakfast, prepared our lunch to take to the clinic, and got us to the van which took us to class. The vans were later used to bring these NRS’s to the clinic to help us with our lunch hour. In the afternoons the vans would return to bring us back to the apartments, carrying one or two evening NRS’s to help. Each van had lift devices to load and unload patients in their wheelchairs, as many as three or four in each van. Other patients also had walkers, crutches and canes that needed to be loaded onto the van, not to mention steps and stands to assist us in climbing up into the vans.

These routines varied a lot depending on the condition of the patient. Since I was not able to eat any meals and got mine from a gastric feeding tube, a clinician would come to my room each morning to give me my feeding – which usually took about an hour – before I got up to shower and get ready for my day at the clinic. I would get other g-tube feedings at lunch, dinner and again late at night. Normally the NRS’s would prepare the meals or supervise the patient’s own preparation.

Bathroom time is always stressful when you are restricted to a wheelchair. First of all the doors in the apartment had to be wide enough to allow access, and it was often difficult to aim the chair right to get it through. You also had to park near enough to the toilet to move off the wheelchair, and then push it out of the way but still close enough to reach it  to get back on it afterwords. This kind of maneuvering took a lot of practice, and I would often have to yell for help from an NRS. Fortunately, they would often stand just outside the bathroom door for just those situations. And also because I would often need them to assist in wiping.

Showers were even worse. We had various kinds of seating for use in the shower, and often two different types depending on the patients sharing the apartment. Often I would have to remove my roommate’s shower chair and replace it with my own. This is in addition to what everyone normally has to do, such as making sure you have the soap, wash cloths and towels within reach.

There were a lot of other things these girls – I say “girls” because all the NRS’s I had were female. There were a few male NRS’s, but while I would see them on occasion, I never had one assigned to me. Each day Nicole would ask me a list of about two dozen questions designed to help me regain my mental abilities. These were questions like “where are you, why are you here, what day of the week is it, what is today’s date, what time is it, what’s the name of this place, what’s my name, who is your case manager, who is your residential care manager, what town are we in, what is the address” and more.  At first it was a struggle to answer any of these questions. But over time, I was able to remember most, if not all of them. I still have to check my phone for the month and day, and many of the names of the people I see each day, but it is coming back.

After I no longer needed a wheelchair, Nicole and I would take walks around the campus at the apartments, which was only about 2/10 of a mile. We began with just once around, but over the months that increased gradually until we were often doing four or five laps each day. As I have mentioned, I also did that most days during physical therapy at the clinic, eventually getting up to a couple of miles in an hour. One afternoon at the apartments they wanted to test my ability to find my way around the neighborhood, so another NRS took me on a walk from the my apartment to a nearby store and back, circling several blocks – about three quarters of a mile. The goal was not the distance or the exercise, but to make sure I could navigate my way around the neighborhood and find my way back to my home.

The NRS’s primary function was to help the patients progress toward becoming independent enough to leave the apartments and re-inter the real world. So I learned to do my laundry, plan my meals, do my own grocery shopping, prepare my own meals, clean my room and my stuff, and all the other things that are necessary in life.

We also had activities planned to get us out of the apartments, like going to the movies or nearby parks. I don’t recall doing this while I was in a wheelchair, but some of the other patients were, especially those who would go to a park. We also went to a Texas Rangers baseball game once, and one time a bunch of us were taken in the vans to a bowling alley. This mostly happened in the evenings, but the bowling happened during one class day, with CNS using a couple of their vans to take ten or twelve of us on an excursion to a local bowling alley. We only had enough time to bowl about six frames, but a good time was had by all! We also had parties, at both the apartments and at the clinic, usually celebrating the “graduation” of one or more patients who were finally well enough to leave.

I’ll have to say, the seven months I spent at the apartments of CNS were definitely the best time of my life. I was regaining my health, meeting many wonderful people, and making friends I would keep for the rest of my life.

Roommates at CNS Apartments

On January 2, 2013 I was loaded into a van in my wheelchair and moved from Zale Lipshy at Parkland Memorial Hospital to the Centre for Neuro Skills in Irving. CNS owns and operates a residential care living facility – an apartment complex – in Irving, nearly four miles from their therapy clinic. That is where I lived for the next seven months while I was going to rehab classes at CNS.

There are about nine buildings, each having four apartments, each apartment housing two patients. For each pair of patients there are six Neuro Rehabilitation Specialists taking care of us – mornings from 7:30 am until we leave for class in one of several vans sometime between 8:30 am and 10:30 am, depending on when we start classes for the day. The patients then return to the apartments either at 3:30 pm or 4:30 pm, depending on our schedules, where we have NRS’s who are with us from then until their shifts end at 11:30 pm. There are then additional NRS’s in each apartment from 11:30 pm until 7:30 am the next morning. I was rarely awake and active overnight, except when I went to the bathroom, so I rarely saw the ones who worked that shift.

During those months in the apartments, I lived in four different apartments with five roommates: Charles “Bo” Lewis, Ashton Cerka, Bo again, Charlie Thums, William “Bill” Donaldson, and John Sims. Like all the other patients at CNS, my roommates had brain injuries, but each had unique symptoms from which they were recovering. Before I suffered my brain injury, I did not know anything about that condition, except when I would see a car park in a handicapped spot and appear to be perfectly healthy when they walked from their car. Then I would jokingly say, “It must be brain damage.” I have now learned quite a lot about brain injuries because I lived and learned with people who suffered from many different types of neural damage, caused from both physical trauma – car and motorcycle accidents, strokes, aneurysms, seizures, surgery, etc. – and poisons, like mercury and lead.

My first roommate, in my first apartment, was Bo. He was a fireman from Mineral Wells, in his fifty’s, maybe ten years younger than me, who was married and had two or three grown children. I think his injury was from an accident suffered on-the-job. He had severe memory problems, especially difficulty remember words, places and events. In fact, shortly after I shared an apartment with him, he left for about a month for surgery. And since I had my own mental problems at that time, I don’t remember much about him then, except that he did not talk much at all.

My second roommate was Ashton, and I really don’t know why he was there, except that he had problems using his arms. What I do remember is that, whenever he showered each morning, he would always have music playing. I don’t know if it was a radio or records or his cell phone, but I loved the music pouring out of the washroom. In fact, I did not like the way, whenever anyone entered the apartment – my roommates, the NRS, or anyone else – the first thing they did was turn on the television, whether they intended to actually watch it or not. They just wanted some noise. I did not. From Ashton I learned that having good music was much more pleasant than mindless noise from the television.

I hadn’t relearned to use my cell phone at that time, but I did have a lot of recordings at home on my desktop computer. So I had my son Evan copy all my songs – over a thousand of them – to my HP/Palm tablet, which I had purchased about a year before I was hospitalized, and asked him to teach me how to use it. I did not know how to find a specific song, so I just set the app to play them all, randomly. From then on, if no one was watching the television, I would turn it off and start my music on my tablet from wherever it had stopped when I last turned if off. In August 2013, about the time I moved out of the CNS apartments, I got a new cell phone onto which I had Evan load all my songs from the tablet, and which I have sense learned to use much more extensively. I still play it every day, and still set it to randomly play everything, mainly because all of the songs I play are my personal favorites!

After I’d been in the apartments for about a month, Ashton and I were moved to different apartments, him to live by himself and me next door to my first apartment. I do not know why these changes occurred, or maybe I did but cannot remember, but I was in an apartment alone for a couple of weeks, and then Bo released from the hospital and moved in with me again. He was talking a little bit now, but it was mostly just “God dammit” and “oh, shit” and very little else. They told me this was a function of his brain injury and to just ignore it. But it was funny.

One thing that occurred with Bo was related to the fact that I was getting all my nutrition from a feeding tube, because of my dysphagia (swallowing difficulty). One evening after Bo had finished his supper – he was not on a feeding tube – he had a small cup of chocolate pudding. Since he was still in a wheelchair and I was not, when I saw him trying to find a place to throw away the empty cup, I go up and threw the cup away for him. However, before I placed it in the garbage can, I took my finger, wiped off a little bit of pudding that was at the bottom of the container, and ate it. Nicole, our NRS, as she was required to do, wrote about what I had done in the record book she was required to maintain about everything that Bo and I did in the apartment. Apparently we all got in trouble when the people at CNS found out that I had eaten something besides the meals I received through the g-tube.

After two or three weeks with Bo, he was moved to another apartment and so was I, but not to the same place. I was moved in with Charlie, a patient with a very different set of problems. He was about 25 and had received damage to his skull from a motorcycle accident. His parents, Sue and Roger, who were divorced and lived in Wisconsin where Charlie had grown up, took turns living in Dallas in an apartment they had rented just to take turns staying near Charlie during his TBI recovery. Charlie did not have any physical problems, but suffered from severe loss of memory. In fact, he did not know that he even had any memory damage. He thought he still lived with his mother in her Wisconsin apartment, and would often try to find his room upstairs, not understanding that he was not in Wisconsin and that this apartment had only one floor. He also could not remember when he had eaten and would look for food over and over again. During the month I lived with him, Charlie gained 15 or 20 pounds. When I last saw him, about six months later, he had put on at least another 20 pounds. He would also want to look for the stuff he needed to take to school, things like his wallet, cell phone, keys and notebooks, all of which he neither needed nor had. Every morning and afternoon, when it was time to go to class or return home, he would delay the vans wanting to find one or more of these items.

One thing I remember from my time at those apartments was that about once each week we would have a fire drill. Everyone had to get out of their apartment and stand outside the fence until the NRS supervisors had checked each room to insure that everyone had left the buildings. After one “all clear” signal, when we all headed back to our apartments, Charlie went into the wrong one. They pretty much all looked alike, but when he got inside, he insisted that was his apartment and refused to leave. After that incident, I made a point after each fire drill to escort him back to our room so that would not happen again.

Because Charlie would often come into my room and take some of my things, I asked to be moved to another apartment. My next roommate was Bill, who was almost well enough to move back home. He would spend hours asking Nicole what he had to do at the apartments to “graduate” and move home. He was my roommate for only two or three weeks before he was able to go home, but one evening, as we were getting to know each other, I told him that I was 93 years old – I was only 63, but had difficulty with numbers and memory because of my injury. He was astonished, of course, and repeatedly insisted that I could not be that old, but I kept insisting, until I mentioned this to someone else, who know how old I was, and who set me straight. I was so embarrassed and I had to tell Bill that I was not really lying, I was just confused.

My last roommate, after Bill moved out, was John Sims, an engineer at Bell Helicopters. He was severely restricted to a wheelchair and had to be bodily moved from that to his bed or anywhere else. He also had limited speech, so we were not able to get to know each other much. He did have frequent visitors – his mother and children – with whom I was able to learn a bit about him, and I often saw him at the clinic as they work on his mental and physical difficulties.

In late July I was happy that I could move back home, but I will never forget the roommates I had there and all of the NRS’s, drivers and other friends I made at CNS, all of whom helped me in my TBI recovery.