The phone was ringing. Shortly after my wife answered it, not only did I know it was our son, but I knew why he was calling. After a couple minutes she shouted to me “Mark wants to talk to you.” As I turned on the speaker my son said “Happy Anniversary.” I couldn’t believe it! We’ve been married 52 years. As our conversation came to a close, I told Mark that we’re going out to dinner at an extremely nice restaurant not far from here. Always looking to make a joke I said who knows “maybe I’ll get lucky tonight.” There was no chance of me getting lucky in the way this quote is usually used. Abstinence, while a choice for some, was just another behavior forced on us by my quadriplegia.
Wedding Day 1965
It is not unusual when I take questions and answers from a group I’d just spoken to for someone to ask me what do I miss the most. I always answer intimacy. Not sexual intercourse, which it 74 would probably not be a major activity anyway, but rather the subtle displays of affection that take place during a normal day. The warmth and security of a hug, a touch as my wife passes by or most of all snuggling in bed. All of these little shows of affection are extremely difficult for someone who was paralyzed and confined to a wheelchair. Once I’m placed in bed, I can only move my arms and my head. Being unable to roll on my side makes snuggling next to impossible. A hug with a person in a wheelchair is awkward at best. The physical presence of the chair combined with the fact that my wife has to bend way over makes contact difficult and as a result usually brief. At night or in the morning while I am still in bed, I will notice my wife walked by and touch my foot or leg. If I wasn’t looking I would never know that it had taken place.
In reality being a quadriplegic takes a lot of common everyday occurrences away from you. However, there are some things that you become more conscious of as a result of your disability. One of the first things that would be mentioned is the observation that the majority of people in our society are good, caring and loving individuals who want to do the right thing. Unfortunately, most programs on television or the Internet tend to focus on the small percentage of individuals who do not fall into this majority.
To get back to the original statement I made to my son little did I know that it was foreshadowing for the dinner ahead. Our waitress at the restaurant also works in my doctor’s office so she knew who we were. In the course of the dinner we mentioned to her that it was our 52nd wedding anniversary. When she bought our dessert there were a couple candles in it and we laughed as we blew them out. When it came time to pay she informed us that someone, who wished to remain anonymous, had already paid for our dinner. While the restaurant was pretty crowded we did not recognize anyone we knew. For some reason someone had reached out and touched us. People should know the strength and ability to persevere, we draw from such acts of kindness. The reaching out of people like this helps give us the strength we need to move through the struggles that we face in our daily lives. Thanks to all of you who reach out to all of us. Oh, and by the way I did get lucky that night.
Our family on our 50th anniversary
Posted in Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Humor, Love, Observation, Reality, Sensitivity, Stuggling
Tagged 50th wedding anniversary, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, relationship, society
We can call him Tommy and he definitely was a son of a bitch. Even given that, everybody still like him and he was popular in the neighborhood until he was hit by a car. Unfortunately, Tommy’s back was broken and he was left paralyzed. After that people didn’t seem to care about him that much anymore.
Then Tommy met Susan Fulcher and she was ready to help Tommy just like she had helped dozens of other dogs who were paralyzed. Susan runs the Dharma Rescue Organization in Los Angeles California. As I watched the video and listened to the reporter on the CBS Evening News last night I knew this was something that I wanted to share. Each dog is fitted with a custom “doggie wheelchair” and then helped to adjust to their new lives helping others.
What struck me about the report was the dogs’ ability to quickly overcome and adapt to their disability and new life. I started thinking they must have accepted what had happened to them, did little or no reflecting about the what ifs and so were ready to move on. While I was going through rehabilitation at Craig hospital, I was overcome by the thought that my new life would be unproductive and I would just exist until I passed away. After a while, I began to realize what happened to me in my new life was almost completely under my control. I made some mental (attitudinal) adjustments and began to move on with a more positive outlook. These dogs just move on approaching their new life with enthusiasm and thus have the ability to help others. It is absolutely critical, I believe, for an individual who has suffered a catastrophic life changing event to accept what has happened to them and move on. Little good can come from dwelling on what has happened and wondering about the what ifs.
It was years ago, after Christopher Reeve’s injury that his attitude of nothing was going to prevent him from walking again caused dissension in the disabled community. He finally realized and accepted the fact that he would be paralyzed for the rest of his life. I don’t think an individual can move forward with their life if they refuse, at least on a conscious level, to accept what has happened. Let these dogs serve as an example of what can be accomplished if we are willing to accept what has happened to us and move forward.
Posted in Ability, Attitude, Community Inclusion, Determination, Disability, Education, Friendship, Love, Nature, Observation, Pet Therapy, Reality, Sensitivity
Tagged adapting, control, lifestyle, physically challenged, quadriplegia, relationship, society
Posted in Behavior, Community Inclusion, Disability, Education, Observation, Reality, Recreation, Stuggling
Tagged depression, Insensitivity, quadriplegia, society
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.
Young gobbler walked by this blind shortly before season
Posted in Ability, Adapting Equipment, Attitude, Behavior, Birds, Determination, Disability, Education, Hunting, Nature, Observation, Reality, Recreation, Sensitivity
Tagged adapting, control, hunting, life lesson, physically challenged, quadriplegia, Recreation, using your mind
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.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, society
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.
Going to the dentist on Halloween
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.
Out to eat with my new bib
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?”
Posted in Ability, Attitude, Behavior, Community Inclusion, Disability, Education, Humor, Observation, Reality, Recreation
Tagged control, life lesson, lifestyle, physically challenged, quadriplegia, Recreation, society, using your mind