Category Archives: Behavior
The doctor thought for a minute or so and said it sounds like restless leg syndrome. Which at first seemed pretty bizarre since I am paralyzed. Those are the symptoms of restless leg syndrome he reiterated. They had begun back in 1999 when I was injured. Over the years they had lessened in frequency, but I still had at least a couple of times a week. If I didn’t take the medication right away it led to night terrors and panic attacks that would possess me for hours.
As odd as it seemed just his defining the condition led to a decrease in frequency. I had learned early on to take Xanax at the earliest of symptoms otherwise it was impossible to avoid the onset. The drug would usually put me to sleep for several hours and I’d a wake disoriented. The decrease in frequency was a blessing in itself and started me wondering if there might be another way to deal with it now.
For a long time, prior to my injury, I had used imagining as a tool in my life. I realize I have already written about it a couple times (Visualization Worth Looking Into and In My Mind I’m Going To Carolina), but this was another use for the powerful practice. In thinking about it, I decided if my legs want to go for a walk, then why not take them for a walk. Early one morning I woke up around 4:30 am. As the initial feelings started; my legs feeling like cement, tingling and then progressing to the overwhelming feeling to move them, I closed my eyes and visualized myself swinging my legs off the bed and onto the floor. Next it was step by mental step walking down the hall and outside. I could not believe how easy it was and how satisfying it was physically and more important mentally. Since that night I have gone jogging and even rode my bike. However, the greatest benefit is that I have not had a recurrence of the syndrome in a couple of months.
The mind is a powerful asset.
Turkey season in upstate New York has been open for a week now. I’ve been able to get out five days and have probably averaged about 5 1/2 hours of hunting time each day. Since the season began I have seen only three hens and they were quite a ways away. It’s much more difficult to hunt turkeys during the fall season. In the spring, both the hens and gobblers are moving most of the day. Hens wander off each day to lay an egg in their secluded nest and then returned to the Toms. After they have a clutch of 10 to 12 eggs they begin nesting and the gobblers start moving around looking for a female to breed. This makes them very susceptible to calling.
In the fall turkeys follow eating habits and rarely call to each other. So, it is extremely difficult to call them into range. The technique, able-bodied hunters use, is to move quickly through the woods until signs are found that the turkeys are near and then try to call them in. This is so difficult that many able-bodied hunters don’t bother hunting turkeys in the fall.
My friend Andy likes to say we are going to be sitting in our chairs all day anyway, so we might as well enjoy what we’re doing. It is that philosophy that takes me to the blind most days in the fall. Today was an exceptionally special day and I would like to share some of the “events” that nature chose to share with me. The blind I went to today is on the west side of a field that runs north and south. It was unusual that I arrived there around 9 o’clock as that’s quite early for me. The sun was coming up directly in front of me and treated me to several special sights. A heavy dew was on the grass in the field and the sunlight reflected off it looking like 1000 little twinkles. I was also aware that more than half of the field was covered with shadows created by the trees in the hedgerow across from me. While I was watching the shadows slowly grew smaller, but what was really wild was watching them move to my left as the sun slowly arced to my right. Neither of these was a fast process and you could almost see the shadows move slowly.
By noon I was getting extremely warm and began to be concerned about overheating. This process can lead to autonomic dyslexia, which can be a life-threatening emergency. I decided to leave. When I got home it was 76° and I knew I had made the right choice. It’s supposed to rain tomorrow, but Sunday is forecast to be sunny and in the mid-50s. There’s still a week of the season left and because I love being out so much I’ll try again.
Take a minute and try, try hard, to imagine sitting in a chair for 12 hours (a day), 84 hours (a week), 2,520 hours (a month), 30,240 hours (a year), and 302,400 hours (a decade). I could keep going, but I hope by now you’ve got the point. This is not a “timeout” punishment. Can you imagine the repercussions today if the teacher made a child sit in a chair all day? It is also not cruel and unusual punishment that might take place in Guantánamo Bay. This is just a situation some of us in the disabled community find ourselves in. While in the chair you can’t leave to go to the bathroom or get up to go to the dinner table, you’re there till taken out. Thank God someone, a long time ago, figured out to put wheels on the chair so we can at least move around. Depending on the level of injury travel can be initiated with the hands, a joystick or a sip puff device. With a sip and puff device the individual controls the movement of the chair by sipping or puffing on a straw like device that is in their mouth.
Some individuals adjust to the situation better than others. Usually, it takes time. Looking back on my life prior to my injury I have the impression that rarely did I ever see individuals with serious disabilities acting happy. In my memory most seemed old and very unhappy (not you Ami). I purposely try to be animated and positive when out in public. Generally speaking, the other few wheelchair bound individuals I know often present in a similar manner.
At times, I wonder if some people in the able-bodied community misinterpret this behavior, thinking maybe it’s not that tough to be in a wheelchair. Often when thinking about this the words Bob Dylan sings in one of his songs comes to mind “Did you ever see the frowns on the jugglers and the clowns when they did their tricks for you?” To be in the chair day in and day out is anything but easy. Most people never see the struggles that go on physically and mentally each and every day. To have made the adjustment to living your life with value and dignity while dealing with a major disability is never easy. Every day is a struggle! Some days it’s easier to adjust than others. Some of the special days make most of the other days bearable. But let me assure you if you’re not in a chair you have no idea.
At times like this I have seriously considered smoking marijuana in an effort to totally change the way I feel. I have never smoked it before and am anxious about my mind would react to it. Craig Hospital, where I did my rehabilitation, is strongly opposed to marijuana use by those who have been paralyzed.
This morning it took almost 3 hours for my medication to take effect. The peaceful calm that I feel when it kicks in is a welcome relief to the terrible anxiety I have been feeling. Usually, after I’m up I get tired and fall asleep for a while. The struggle one goes through can only be understood by one who has been through it. It’s all consuming.
The question at this point becomes what can one do about it? The feeling, while it is going on, is like being possessed and rational thought is impossible. Well-meaning intentions of others are irrelevant. It’s been over 17 years now and I have no idea or advice for dealing with these. The only good thing about them is that they always end.
If an individual has a disability, they will be greatly aided in their journey through life with a sense of humor. We have all heard the expression, laughter is the best medicine and I am absolutely sure that this is true. Being realistic I think developing a sense of humor may take some time after the onset of a disability. It’s my feelings, if the disability limits the person in certain ways the individual may well have to go through a grieving process.
In my own case my quadriplegia has rendered 75% to 80% of my body paralyzed. While the paralysis starts below my armpits my arms have also been greatly affected. They have limited range of motion, intermittent feeling at best and my hands have little to no grip.
Regardless of the cause of the disability an individual has every right to feel anger, bitterness, frustration and wonder “Why me?” Depending on the circumstances, these feelings can fall onto quite a continuum. My “accident” was the result of a condition called Shore Break which was known by the National Park Service to exist in the Virgin Islands, but was pretty much kept from the beach goers. Hawaii requires, by law, warning signs be posted on any of its beaches where this condition exists. While bitter about their choice not to warn people the situation was easier for me to accept knowing it occurred while doing something I loved. How victims deal with things like being struck by a drunk driver I’ll never know, but I do know one must move on. Accepting what has happened is the beginning, a first step.
In spite of an individual’s situation, what good is wallowing in self-pity going to do? After due time, one must move on. Humor can aid in that process. Even for able-bodied individuals, being able to find humor in things, being able to laugh at oneself and the situations one finds themselves in is cathartic. In no way do I mean to imply this is easy or will come naturally to most people, but “gallows humor” can really be beneficial. So my question to you is “What’s in your wallet?” Only kidding, it’s “If you can’t laugh, how’d you get here?”