Sunday, February 26, 2006

An Aside

I was just thinking about how long it took me to begin living independently since I had my injury. Most of the quadriplegics that I've met or have heard about through other channels have done wonderfully with getting on with their lives relatively soon after their injuries. Why did it take me so long?

Admittedly, I lived a pretty sheltered life. As a child and teenager, I pretty much got anything I wanted. If I asked for something, my father would buy it for me and he let me do pretty much whatever I wanted. I didn’t ask for things that often and never asked for anything big. But being my dad's firstborn and a boy, I was his favorite. His father had been stingy and mean. My dad had told me many times over during his lifetime how he had sworn to never be like that. And with the exception of his being a mean boss, he was always loving and caring towards me.

He wasn't a good parent, though. I think he believed that children raised themselves, and that was how I was treated. I was pretty much left to fend for myself. My mom did her best to raise me right but my dad had the final word. I asked her a while back why she allowed me to go to Woodstock at the age of 14, and she had told me that whatever he said, went. I look at 14-year-olds now, and realize how young I must've seemed back in 1969, but at the time I felt as if I was as old as I needed to be. What 14-year-old wouldn't?

What I'm saying is that I had very little or no parental guidance growing up. That I was able to formulate my own ideas about religion, I am thankful for, but I wish that my dad had paid more attention to me during my teenage years. I was left to run wild, which had some dire consequences on me. I imagine that he guessed I would figure it out on my own, which I imagine he had done to a large extent but with much greater success.

My dad was a very independent man. As a teenager, he had left home with his older brother in 1932 or thereabouts to drive a Model T from Texas to California. He never returned home until many years later when his father died, and that was only to attend the funeral. He was very strong-willed, as well. When he had a heart attack in his fifties, he was told to give up cigarettes and drinking, which he faithfully did. Unfortunately, I neither inherited his independence nor his strong-willed temperament.

There are so many influences that shape a man's life that it is impossible to simplify it into one or two causes, but my father was a big influence on my life, which included his lack of influence.

Besides my father's freewheeling ways of raising me, I believe I was born insecure. That would explain my extreme shyness over half my life. As a teenager in junior high school, probably because of my insecurity, I was heavily influenced by peer pressure.

In seventh-grade, it was this peer pressure that led to my using drugs. At first, it was because I wanted to be with a group of other kids that were doing them, but after awhile I found that I liked certain drugs a little too much. I liked to experiment, and by the time I was 15, I was using drugs compulsively.

I got arrested not long after and ended up going into a live-in drug treatment program. I ended up staying there for over two years. I left without officially graduating knowing positively that I would never use drugs again. I was 17 at the time. By the time I was 20, I had started up again.

In the forward, I mention that I moved to Dallas in 1985 to get away from my dad's business. More than that, it was an attempt to stop my drug use. The geographical cure doesn't work in the long run, and it wouldn't have worked for me had I not had my accident when I did. I still had the craving. It was only a matter of time.

What this self-disclosure is leading up to is to perhaps allow the reader to better understand my state of mind, particularly emotionally speaking, at the time of my accident. It's been said that one stops growing emotionally when one starts using drugs, and I consider this to have a lot of truth. When I fell and broke my neck, I was ill prepared emotionally to deal with a personal catastrophe. It took me longer than most, but I finally made it. I'm comfortable in my skin now, perhaps more so than any time in my life including before my injury.

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Saturday, February 25, 2006

As if it were Yesterday by Rosemary

I remember the day as if it were yesterday. I was hung over and I promised myself, I would never drink again. At 24 years of age, it was definitely a turning point in my life, in more ways than one.

The night before, Friday, the 13th, was a monumental day in my life. It was the day that my now-husband asked me out on a first "date." Little did I know, the next day would outweigh anything that had ever happened to me in my entire life. Even outweigh being asked out by someone I had had my eye on for months--and having to refuse. Yes, I had to tell him I had other plans. Ouch. But, I really did. And it was an important night that I couldn't fluff off.

My good friend Pam was moving, out of state. None of my friends had ever moved away from Arlington. What was the deal there?? Amy, Kell and I decided to take her out on the town, one last time. She was married, we were still single. I remember hitting some club in DC that was headlining a good band that we had always enjoyed listening and dancing to, "Downtown." I think it was one of their last shows before the lead singer was heading out to California to follow his new wife. Yuk. No fair, it such an awesome local band.

Well, we did, indeed, tie one on. Ow. Lord only knows what time I dragged my butt in that morning. I do remember sleeping until after noon. When I got up, I called Kelly, my best friend, to come down to the house and hang out. We both just laid in the yard on the cool grass, feeling extremely tired and, yes, still extremely hung over. It was late afternoon when she decided it was time to go home, so I mosied back into the house and back into bed to nurse the major headache I still had.

I was the only one still living "at home." My brothers had moved out years before. Jim was living in DC and my brother John had moved to Dallas to expand our family photo business. My dad had moved out when I turned 18 because he and my mom just couldn't get along living together any more. They stayed friends and he continued to support her. I had a good job and helped with the groceries every week and anything else my mom needed. We were good buddies, always.

The phone rang a couple of times, and I lay there thinking mom must have picked it up. Then I heard her, at the bottom of the stairs, with a wail that I had never heard before in my life. It was a curdling wail, not even close to a a scream. I knew something was wrong right away. I ran to the top of the stairs to see what had happened. She was still holding the phone to her ear. She was crying uncontrollably and she fell to sit on the bottom step. "John has had an accident--I don't know...." I asked her who was on the phone. It was Mitzi, my cousin, in Dallas. She's my cousin but strangely my mom's age. My mom couldn't talk so I took the phone and asked Mitzi what had happened.

"John is in the hospital. He fell off something and broke his neck. The doctors say he'll never walk again." What??? I tried to get as much information as I could. I stayed calm and strong (for mom if not for myself). I got all the numbers for the hospital that I needed so I could gather my own information.

I made sure mom was ok. I didn't want her to have a heart attack or anything. She was physically and mentally shaken as you can imagine. I had never seen her like this before. I called Dallas' Baylor Hospital from the kitchen to see if, in fact, the news we had just heard was accurate. I kept thinking in the back of my mind, "They have to be exaggerating, it can't be so." I think I called the ICU and spoke with someone, I don't even know who. He confirmed that yes, John had broken his neck and his spinal cord appeared to be severed. They would be able to tell more after the swelling went down--which could take months and even up to a year before they would know "for sure" if he would ever walk again. They explained where the spinal cord had snapped and that John had feeling on his shoulders but nothing below that. He would more than likely be in a wheel chair for the rest of his life. Whether or not he would regain use of his arms, only time would tell.

I'll have to think now on how things progressed. It is this part that I remember most. How can anyone forget a phone call like that? I'll try and coincide with John's entries on my perspective of this life-altering experience. Let me stress that an accident of this multitude not only effects the person who becomes disabled, but it deeply effects the family and loved ones also. I can't say that enough. He is not the only one who went through hell and back, the family was right there by his side, some more than others. So, for anyone who is going through this very tough time with a loved one, I can only say that you all will survive.

Yes, there will be extremely tough times. You will have to do things you never thought you would have to do. There is a learning curve almost as intense for you as there is for the person who had the accident. But hang in there. I truly feel there is a reason these things happen; and it all makes us better people, somehow. You may not feel that now, but you will.

In the Hospital

So there I was in Baylor Memorial hospital in Dallas Texas after falling and breaking my neck. I'd just gotten the news from the doctor that I would be totally paralyzed for the rest of my life. It was as if a life sentence had been passed down. I wished that I were dead.

I couldn't spend the rest of my life lying in a hospital bed. For the first time in my life, I wanted to commit suicide. But I was paralyzed, how could I do myself in? It was a mind-racking Catch-22.

A nurse came in to get information from me: name, birthday, and insurance information, etc. I gave it to her. I was glad that I had health insurance.

A few minutes go by, and then a male nurse comes in and explains to me that since I can't control my bladder on my own that a catheter needed to be inserted up to my penis. Oh Jesus, I just knew that was going to hurt. I couldn't feel anything below my shoulders, but my penis, it was still going to hurt; of that, I was sure, but I didn't feel a thing. I was thankful for that.

Then I was put into tong traction and placed on Stryker frame,
which allowed me to be turned facing down periodically to keep the pressure of my backside and prevent pressure sores.

It was hell being in the inverted position with my face facing the floor. My head had to be supported in a sling, which proved to be quite uncomfortable. I was certain that something more comfortable could be devised, and I was angry that someone had not already done it.

My neck hurt quite a bit, and being a baby when it comes to pain I asked for something. The nurses explained to me that the doctors didn't want any pain masking drugs in my system so that if any additional pain occurred I can tell them about it. I began to have a serious dislike of doctors right then and there.

It must've been around 9 p.m. that I had my first visitor, my aunt Eunice, James’s mother. It didn't take more than a minute or two before she started crying. I felt ashamed. I didn't want to be seen like this, and I certainly didn't want to cause anyone any grief. I'd caused too much grief in my family already. I didn't want to cause any more. Couldn't I do anything right?

The shame I felt being paralyzed, it was bad. I felt subhuman. I felt disfigured, something to be pitied. I didn't need the weight of anyone's pity on my mind.

(More to come in next post)

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Friday, February 24, 2006

Ground Zero

Dallas, Texas, September 14, 1985 5:30 p.m. Central Standard Time: I fall and I break my neck. I am a quadriplegic, but I don't know it yet.

James calls down to me. "Are you okay?"

"I think so," I reply. I lie on my back kind of cocked on my left side, where I've fallen on some old ceiling tiles from the floor above, and my neck and shoulder hurt like hell. I can't move. What's wrong? I must've gotten the wind knocked out of me.

I hear James climb quickly down the ladder from the storage area and come to where I am lying. I ask him, "Am I bleeding?"

"No," he says.

Thank God for that. I was afraid I might have broken a bone or something.

"Roll me off my shoulder." I'm not really alarmed, yet, that I can't move. Must be the wind knocked out of me...

"They say you're not supposed to move someone if they've been injured," James says.

" I don't care. My shoulder's killing me."

"Okay..." James says with reluctance in his voice. He moves me off my shoulder and more onto my back. That feels better. "When you first landed, I thought you were dead."

No, I'm not dead, but something's wrong. I should be able to move. Give it a few minutes. It will pass. But as the minutes ago by, it doesn't get any better.

James asks me, "Do you want me to call an ambulance?"

"I guess you better." I am getting worried now. Something is wrong.

"I'll go next door and call," James says.

"Okay." There is no phone here in the warehouse where James and I have been working for the past few weeks. We are fixing up the place to have an office and a photo studio to work out of. When we had first started I had said to James that one of us was going to get hurt before we got done, but I had envisioned one of us stepping on a nail or banging a finger with a hammer, a broken arm at the worst. But what was this that I had I done to myself?

James got back. "They're on their way."

We both look at each other for a moment and then he looks away. I bite my bottom lip. It takes a long time for the ambulance to get here. I go nuts waiting for the paramedics to arrive. I'm plenty worried now. Where can they be? I thought ambulances were supposed to arrive quickly.

After what seems like an awfully long time, the ambulance finally arrives. It's been about 20 minutes but it seems like it's been two hours.

After what seems like an awfully long time, the ambulance finally arrives. It's been about 20 minutes but it seems like it's been two hours.

The paramedics come in and ask me what happened. I explain to them how I was working upon the second-floor mailing in a two by four when I lost my balance and fell. They talk some paramedic stuff to each other, and one begins to cut my shirt off, which ticks me off, because I really like this shirt. It's a long sleeve T-shirt with some Greek letters on the front. I don't know what they mean, but it looks cool.

They get the shirt off, put a brace on my neck, put me on a stretcher, and load me into the ambulance. It's really starting to sink in now; I'm seriously hurt. The paramedic that sits in the back with me tells me it's probably just a pinched nerve that it has happened to him before.

And so the story goes until I wind up on a Stryker frame in the hospital...

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Wednesday, February 22, 2006

A Forward of Sorts

As this is my first post to the Beginners Guide for Quadriplegics, I suppose I should write a forward of sorts: who I am, how I got injured, and why I decided to start this blog.

I was born in Alexandria and 1955 and raised in Arlington, Virginia. My dad was photographer who ran his own company, Central Photo; he took pictures of school groups visiting Washington with the US Capitol building in the background. Copies of the photos were sold to the students as souvenirs. My Uncle ran White House Sightseeing, a tour bus company in Washington, and when I old enough (around 10) I worked for him during the summers running the souvenir stand in his office. In high school, I worked after school in the lab at Central Photo printing pictures. In the long run, it gave me a good work ethic, though at the time I would have rather been doing something else. I didn't mind the money, though. After graduating high school, I went to work for my father full-time.

Working for my dad had its ups and downs, as any job does, but I think working for one's parent puts a greater strain on the employee-employer relationship, and my dad was a pretty tough boss to begin with.

At first it was great, though. I worked up at the Capitol with either my dad, or one of the other employees. It was their job to arrange the group, and I operated the camera. It was a No. 10 Cirkut Camera, a panoramic camera that can take in very wide views by sweeping from left to right in exposing the film in increments. It is the only type of camera that will allow one to photograph the same person twice in the same picture so that they show up on both ends of the group in the photo.

This is how it works: the camera starts photographing the left-hand side of the group first and then sweeps around until it gets to the other end of the group. The "runner" runs from the left-hand side of the group after the camera photographs it and takes a position on the right hand side of the group before the camera gets there. It is a unique effect and quite popular with the school kids. Everyone wants to be a "runner."

After a couple of years working up at the Capitol, it was decided that I would start running the office. Back then, part of running the office was overseeing the running of the photography lab. During the off-season things were fine, but when it got to the busy season it was my job to hire additional help to accommodate the extra business. Now, I'm basically a pretty shy guy, introverted you might say, so when it came time to hire people and be their boss, I was pretty much at a loss. It was pretty stressful, and after nearly a decade of doing that, I wanted a change badly.

My father was from Texas, and he had family there, so in 1985 I worked it out with my dad to move down to Dallas to set up a branch of Central Photo there. I would have a Cirkut camera with which to take the photographs, and I would send the exposed film back to Washington. They would make the prints and mail them back to me in Dallas to sell. I was to take pictures of high school graduations, reunions, and other large groups, but I would have to drum up the business.

My cousin James lived in Dallas at the time, and we knew each other and got along well, and he agreed to let me move in with him. I was 30, and he was 29, and we had a fun time together with him showing me around Dallas.

James had taken photography in college and had hopes of establishing a photography business of his own. He was a studio photographer specializing in advertising photography. As I needed an office to work out of and he a studio, we decided to rent a small warehouse. He knew of such a warehouse, but it was in rather poor repair. The rent was right, but it was going to require a lot of work to get it ready for us to work out of.

The previous tenants had been a rock band who had used it as a practice area. They had attached old remnants of carpet all over the walls for acoustic dampening and left the place a terrible mess, as you might expect a rock group to do. Some previous tenant before them had built an office area in the front of the warehouse that you enter as you walk in the door, and the office's ceiling served as a floor for a makeshift storage area above it. A wooden ladder was permanently attached to it for the purpose of accessing the area.

Now, I had always been afraid of heights and was particularly afraid of ladders. Going up wasn't bad, but coming back down was the part that scared me. Backing off of a ledge and blindly trying to find my footing made me feel that I might fall. I always had a hard time getting that first step or two. After that, I was okay. We had to do a lot of work up on the storage area—we wanted to fix it up as a living area—so day after day I had to climb up and down that ladder. But after going up and down enough times, I slowly began to build up confidence. After a few weeks, my fear of coming back down the ladder had completely disappeared and for all practical purposes my fear of heights was gone. It was a revelation for me, and I began to get cocky, walking down the ladder instead of climbing down. I was proud of myself.

Then came time to replace some of the storage area's floor beams. It was on a fateful Saturday afternoon, September 14, 1985 to be exact, that James and I went to Home Depot (or whatever they had back then) and picked up some two by fours and some tools to accomplish the task.

Getting back to the warehouse, I climbed up to the storage area and pulled up some of the flooring, which consisted of pieces of plywood. This left the floor beams and the office below exposed. Undaunted, I sat with my legs hanging down towards the floor below. I pulled up a floor beam with the help of James, and he handed it down to a fellow below who cut a new two by four to length. He handed it up to James, and we placed it into position for nailing back in. It was a reach to get to the two by four, so with hammer and nail in hand I leaned forward to nail it in. I hit the nail, and it bent. I went to pull the bent nail out, and it pulled the two by four up off the narrow ledge it sat on causing it to slip of and fall. I lost my balance and began to fall towards the floor below.

The day before, James and I had pulled down some old ceiling tiles from the office leaving wooden slats with nails sticking up out of them. So as I fell forward, I instinctively covered my face to protect myself from those nails. If it hadn't been for that, I would've had my arms out to break the fall. As it was, I did a kind of somersault on the way down and landed on my head and left shoulder. Luckily, the ceiling tiles were still laying down there, or else I might have cracked my head open on the concrete floor.

I lay there unable to move thinking that I had had the wind knocked out of me. I had never had the wind knocked out of me before, but I had heard that it could paralyze you momentarily. But after a couple of minutes, and I still couldn't move, I began to get worried.

Immediately after the fall, James had called down to ask if I were okay, and I said, " Yes, I think so". I thought that maybe I had broken something and was bleeding. James came down off the storage area to assist me, and I asked him if I were bleeding. He told me no, and for the moment I was reassured. But the worry set in, and when James asked me if I wanted him to call an ambulance, I told him yes.

It took a long time for the ambulance to get there, some 20 minutes, long enough for me to get plenty scared. I had no idea what was wrong. When the paramedics finally arrived, they cut off my shirt (which strangely enough irritated me considering the gravity of the situation), put a neck collar on me, and strapped me onto their stretcher. They transferred me to the ambulance, and on the ride to the hospital the paramedic who sat in the back with me reassured me that it was probably only a pinched nerve, that he had had it happen to him. I hoped he was right, but I had a bad feeling about it.

We got to the hospital, and x-rays were taken. When the doctor came in to give me the news, and I wasn't ready for what he had to say. He told me I had fractured my spinal column (between my fourth and fifth cervical vertebrae) and severed my spinal cord. I would be a quadriplegic for the rest of my life. I was devastated, to say the least. I wanted to die, and I believe that I if they had given me the option of euthanasia that I would've taken it.

Not long after, a nurse told me that a catheter needed to be inserted into my penis so that I could urinate, and I just knew it was going to hurt. Theoretically, I knew I wouldn't be able to feel it, but I was sure that I would. When the procedure was done, however, it was the first time that I was glad that I couldn't feel below my shoulders.

The next thing they did was to put my spine into tong traction, which consisted of attaching a tong-like instrument onto my head. Its sharp pointed ends went through my scalp and into both sides of my skull. They put me on me on a Stryker frame , and a weight attached by a cable to the tongs put tension on my spine with the hopeful effect of pulling my broken vertebrae back into alignment. As painful as it sounds, it didn't really hurt much at all even when they actually attached the tongs to my skull.

The tong traction didn't have the desired effect, though, and I was given the choice of wearing a halo brace or undergoing fusion surgery on my spine. I opted for the surgery, as a halo brace looked terribly uncomfortable.

After my medical condition was stabilized, which took about a month, I was transferred to a rehabilitation hospital. There I underwent physical and occupational therapy. Physical therapy consisted of exercising the muscles that I could still use and in occupational therapy I tried to relearn basic skills such as feeding myself.

The only thing I really accomplished was to learn how to drive a sip-and-puff wheelchair. I operated the sip-and-puff wheelchair by my sipping and puffing (which is a nice way of saying sucking and blowing) on a tube that I held in my mouth. A single puff would start the chair moving forwards. After that, a continuous puff turned the chair right, and a continuous sip would turn the chair left. After one stopped continually sipping or puffing, the chair would begin to go straight again. A single sip would stop the chair. Up to this point I had had to be pushed in a manual chair. It was a liberating experience to finally be able to do something on my own!

While in the rehab hospital, I also saw a psychologist who told me that it usually took about five years before a person begins to come to terms with his or her catastrophic injury such as mine. I didn't see myself as ever coming to grips with this thing, this horrible thing that had happened to me.

While there, I also took tests to determine my cognitive abilities so as to determine the best course of action as far as my learning a new skill. I did pretty well, and it was decided that I be taught computer programming, and my insurance company agreed to foot the bill. (At the time, I think they were training all of the quadriplegics that they could to be computer programmers.)

As I was hurt on the job (I had still been working for Central Photo at the time of my injury), I was covered by Worker's Compensation insurance, which turned out to be a godsend. The insurance carrier was obligated to take care of my needs for the rest of my life, as I was considered completely disabled. As I've found out from years of talking to others who have been catastrophically injured, without good insurance or a healthy bank balance, it is nearly impossible to live by one own means. Many people end up on Medicaid, which to qualify for requires you to be practically destitute, and Medicaid benefits are not very good.

I was sent to Woodrow Wilson Rehabilitation Center (WW RC) in Fishersville, Virginia (established for injured soldiers coming back from World War I) to go to their (Woodrow Wilson's) computer programming school. For some reason, I just didn't take to learning computer programming, so they put me in their business school that consisted of an accounting class, a typing class and several shorter classes such as filing and office skills. The best thing that came out of it all was that I learned how to type with a mouth-stick (a wand with a rubber tip on one end and a U-shaped piece on the other with which one can grasp with one's teeth). I got up to a steady rate of 15 words per minute. Not bad for a gimp with a stick.

After a little over two years, I graduated from WW RC and was sent out into the cruel world to fend for myself. While my insurance company paid the rent on an apartment and provided funds for attendant care, I didn't have a clue. I just wasn't ready to make the transition to living independently. By my own choice, I went into a nursing home that luckily enough had a rehab unit in it for people needing rehab before going home after coming out of the hospital. Although I was in a nursing home, where depressing old people inhabited the place, I was in a cocoon of sanity. I was able to stay on the rehab unit. I had a double room that I shared with various people as they transitioned between hospital and home. I met some very interesting people that way.

Over the eight years in the nursing home, I slowly began to feel more comfortable about my being handicapped, slowly gaining courage to get back into the real world. It took many years for me to get to where I could go to a shopping mall alone, about 10 years, but once I made that step that I had feared most, that of going out alone, things really started to click. It was not long before I wanted to get out of the place and to get a place of my own. I had some money saved up, and, besides, the insurance company had paid for me to be in an apartment before. Serendipitously, it wasn't long before my insurance company approached me with an offer for me to live in a place of my own. Of course, I eagerly said yes. My claims manager found a condo, which met my approval, and the insurance company purchased it. It is mine to use for as long as I like, and it's a pretty nice condo. Not a bad deal.

Switching to the present, I have lived in this condo since 1997. It will be will be nine years in October. Since I've been living independently, with the help of personal care attendants (PCA's), my quality-of-life has become incredibly better than what it once in the nursing home. Having worked through the process of coming to terms with my injury, I believe I have matured much more that I might have had I not had my accident. Don't get me wrong; everything is not all hunky-dory. But I can honestly say that I am enjoying life.

In the following posts, I will try, through my own experience, to give the recently spinal cord injured (and perhaps as equally important an insight for the families of said individuals) a sense that they are not alone, that it's okay to feel despair, hopeless, insignificant, shameful, angry, resentful and any host of emotions. For me, it was a truly horrible experience, and I would never want to go through that again. My heart goes out to anyone recently experiencing a spinal cord injury.

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