The 10 things I've Learned as A Quadriplegic

Being a quadriplegic is a learning opportunity. I found my opportunity a few years ago when an odd confluence of events left me laying on the floor of my home office paralyzed from the neck down. Actually, I don't remember laying on the floor, I learned it later from my wife, and I didn't know I was paralyzed. The first thing I clearly remember is being transported by ambulance to a hospital about twenty miles from my home. I wasn't quite sure why I was in the ambulance, but I knew something very strange was happening.   At that point, I don't think I knew I was paralyzed, but I knew I was immobile. 

1. Paralyzed means: crap I can't move and I can't blame it on an indiscretion. That may be the first thing I learned; there is a big difference between the two. Immobile means I can't move right now because I'm drugged, strapped down or really sleepy, perhaps all three. But, paralyzes means so much more.
    
2. The love and support of a good women should never be discounted or abused. And, if you have done so, shame on you and clean up your act. The first thing I remember about the next day was my wife's swollen-eyed smile. The memory is vague, but I think real. She was holding my hand, which I could not feel, saying we've got your heart and your mind, that's all we need. To this day that's our motto.
    
3. People are at a loss when confronted by someone that has suffered a devastating injury. Friends visited in the first few days after my ICU incarceration. At that point, I could talk, smile and turn my head side to side. That was it. My friends were kind and sympathetic and certainly hoped I'd get better. Some offered to pray for me, while others made awkward attempts at humor. But, all of their eyes held a similar message: "Poor bastard!" And what else could they think. Lets face it, there just isn't a good way to deal with situations like mine.
    
4. People that have suffered a devastating injury are at a loss when confronted with well wishers. I did appreciate seeing friends, but in some ways I was troubled by it. I found myself wanting to make it easier for them because they were so uncomfortable. I had the sense that I had cracked their personal shell of invincibility. You know the shell. It allows you to drive on roads full of idiots, fly in 875,000 pound airliners, and eat at Taco Bell without being frozen by fear. My situation, and the unpredictability of it, scared the hell out of them. I knew it and didn't know what to say.
    
5. ICU nurses are angels.  The nurses in ICU were more than nurses, they didn't focus on my injury or paperwork to the exclusion of my person. They knew I was going through a difficult situation and did all they could to help. One of the wonderful things they did was scratch my nose without complaint. Prior to my spinal cord injury, I itched constantly. My shins were often covered with claw marks. And, some sun deprived parts of my body forcefully demanded the attention of my finger nails when no one was looking. After my injury, all the itchy demands of my epidermis, below the neck, moved to my nose. My itchy nose drove me nuts for a time and the nurses were there for me. I learned to live with the itch without asking for help; they had enough to do, without my nose being in the way. But, I am thankful they gave me the support to get myself to that point.
    
6. Rehabilitation is not what you think. Dictionary definition: to help somebody to return to good health or a normal life by providing training or therapy. The dictionary is what I had in mind when doctors started talking about sending me to a Rehab hospital. And when they compared the distant facility that specialized in spinal cord injuries to the closer generalized Rehab hospital, my wife and I chose the distant facility.  The distant facility was a 5 to 6 hour drive for my wife, assuming good traffic, verses a 90 minute drive. We made a bad decision based on bad information. We chose the distant facility. We also learned that a more accurate definition of rehabilitation was more like: to help somebody live with their infirmary and make their loved ones put up with it as quick as possible. Rehab was rarely about getting better, it was about getting by.
    
7. Embarrassment dies a quick death. I was taught to cover my private parts and not allow others to see them, unless those others answered to mom or wore a white coat. Of course this doctrine had to be modified during gym showers and on my wedding night, but still ,I was adverse to inappropriate displays of nakedness. My embarrassment lasted a few seconds: maybe. I figured I could live with it, after all, I needed the help, the nurses had seen it all before, and they didn't laugh at me. Well at least not in my presence.
    
8. There is a caste system in all social groups. I guess I didn't need to be a quad to learn this, but becoming one made it very obvious.  The caste system at Rehab was roughly based on the nature of an injury and the prospects for functional recovery. The top, and by far the smallest, caste were the Temps. These were the few who had suffered a severe spinal cord injury but were likely to have a full or almost full recovery. Then there were the paraplegics. They had lost the use of their legs, but had functioning hands and arms.  They might be able to get around, hold a job, scratch their nose and maybe drive a car. Then came the quads. They had lost the most function and often had the worst prognosis, so they sunk to the bottom.
   
   When I arrived at the Rahab center I was put in a room with three others. They were para's. At quiet times we would talk, at first about how we got there, and then about the inane things all of us discuss at a social gathering.  As we talked, I sensed a feeling of pity from the other guys. My roommates changed over the weeks. But, the feeling that they pitied me continued, it was like they were saying, "Poor bastard," at the end of each sentence. I understood that attitude from able-bodied well wishers, but not from these guys. Then a new roommate joined us. He had suffered an injury some twelve months earlier and had been recovering from various surgeries. He was really anxious to start Rehab as soon as a bed sore healed.  A few days later he was hauled off to a convalescences hospital because his bed sore wasn't healing fast enough. As I said good bye, I thought, "Poor bastard." And then I understood the whole caste system. I felt bad for his plight, and as a result, I felt better about my own plight.  I hope I ask a question the next time I look at someone with pity. Which one of us deserves it?
    
9. Insurance is not my friend but I do love it. Apparently, and not so many years ago, patients stayed in Rehab for months on end. I got the sense patients stayed until there was no reasonable expectation of further help from the hospital. In my experience the criteria seemed to be, you're out of here in five weeks unless you're about to demonstrate a miracle recovery that will make the hospital look good on performance reports. I definitely was ready to go home, but I honestly think I would have benefitted from another month at the facility.  At $7,000 a week, the insurance company didn't agree and I went home. On the other hand,  my wife and I would be bankrupt had we not had insurance. So if you want to complain about insurance, go for it, but pay your premiums.
    
10. I'd rather be happy. It's been over four years since my injury. I've recovered a lot of functions, bladder and bowel control being two of the best. With the help of my primary caregiver, see number 2 above, I've got a good life. During this journey people have told me I was an inspiration to them. I've said thank you, and to be honest I've been proud of their statements. But internally, I've shaken my head in confusion. I just don't get it. The only thing I could think of to cause their statements was that I've tried to be positive about the future and not focus on the negative.
    
    A few days ago, I was at physical therapy and encountered another patient that I had seen only once before. She said, "How are you?" I responded, I'm good, actually I'm great." She said, "Your so happy?" I said, "I'd rather be happy than not. There's no joy in the alterative." Then it dawned on me. It wasn't inspiration I was instilling, it was some kind of awe at being happy.
    
    So, I think the most important thing I've learned as a quadriplegic is: I'd rather be happy than not. Happiness is not given or withheld by others. Happiness is within you. If you expect others to read your mind and thereby create happiness for you, you will be disappointed. If you think gifts or winning a lottery will create happiness, you will be disappointed.  Happiness is within you. You won't find it anywhere else.