The light, from the full moon, was twinkling off the water as we slid our kayaks into the lake. We had paddled here many times before, but there was always something special when paddling under a full moon. The small little lake hidden off an old road in Jefferson County, was absolutely beautiful. It was probably close to midnight when we loaded the kayaks back on the truck and headed for home. Little did I realize that the time it would be many years before I would return.
After my accident in 1999 I wondered if I would ever go back and paddle on this lake again. In my mind, I set it as a goal not knowing if it was even realistic. In the rehabilitation hospital in 1999 I read a quote in a book written by Christopher Reeve. It had a tremendous impact on my attitude toward my own rehabilitation. Reeve said:
“I refuse to allow a disability to determine how I will live my life. I don’t mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery.”
I began kayaking again in 2003. We had to start from scratch. No information was available on quadriplegics kayaking. Progress was slow. It took a group of people for me to go at all; as a result, I only got out a couple times a year. So improvements and adaptions were slow. Once I even tipped the kayak over and since I was completely strapped in and my hands strapped on the paddle would have drowned if it wasn’t for the quick thinking of two members of my “entourage”. Despite all of that, progress moved ahead, first pontoons, next a stadium seat whose back was raised by a local machinist, chest laterals were added and after much additional tweaking during my one paddle last year I decided everything was stable enough to go for my goal. Through all these years I was paddling on a large pond owned by good friends of ours. But in the back of my mind always was the dream to return to Payne Lake.
Steve fishing for bass
Yesterday, I awoke from the dream, many times in our lives, we imagine certain events happening and when they do they fall far short of the scenario that had been created in our mind. Yesterday the experience exceeded everything that I had hoped for. We paddled for several hours. My wife and I together on the water for the first time in over 18 years. The lake whose aesthetics I could only dream of were more imposing in person. By sheer accident, I paddled up on a heron, which I was unaware of, until I was almost on top of her. We watched her fly from spot to spot and even saw her catch a small fish. My friend Steve, without whose help I would not do half of the things I do, had a bass launch out of the lily pads to take his lure, but it slipped the hook during some aerial acrobatics. I live for opportunities like this.
What a special day.
The moral of the story is don’t stop dreaming. Dreams really can come true if you continue to work on them and refuse to give up.
Posted in Ability, Adapting Equipment, Adaptive Technology, Attitude, Behavior, Determination, Disability, Education, Friends, Friendship, Love, Nature, Observation, Reality, Recreation, Sensitivity
Tagged adapting, Caregiver, life lesson, lifestyle, natural environment, outdoors, physically challenged, quadriplegia, Recreation, using your mind
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
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.
Going for a Walk
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.
Posted in Ability, Attitude, Behavior, Creative Ideas, Disability, Education, Reality, Sensitivity, Simple Solution, Stuggling
Tagged adapting, control, life lesson, lifestyle, physically challenged, quadriplegia, using your mind
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
Those words are the title of the Bob Dylan song written in 1964 which has become a classic. The song discusses societal changes that were taking place. It covers a variety of new attitudes that were going to happen, Dylan believed, regardless of résistance. While the song says nothing about disability or the disabled community I would imagine it would be fairly easy for Dylan to add a verse today discussing societal changes happening towards individuals with disabilities.
Peta-Murgatroyd & Niles DiMarco
Just this month (May 2016) we have seen three sign posts that I would present as examples of what is happening in our society today. The most recent would be the presenting of the Mirror Ball Trophy on Dancing with the Stars to Niles DiMarco, who won the championship despite the fact that he never heard a note of music the entire time. Niles was born deaf, but refused to allow that to stop him from obtaining goals that many would believe were impossible. In my opinion the most poignant part of all the season was when they stopped all music while he was dancing so the audience could see the challenge he was dealing with.
The second event occurred May 19 when 30 year old Charlie Linville, an Afghan war veteran and amputee, summited Mount Everest. As if to remind us how difficult, dangerous and demanding this still is, within a couple days of his accomplishment three climbers died while trying to summit.
The final event occurred earlier in May as the Invictus (which means unconquered) Games the place for three days in Orlando Florida. The concept of the games was the brainchild of Prince Harry of the United Kingdom. Knowing firsthand the sacrifices the men and women of the armed forces make to defend our freedom and way of life he decided to begin the games as a tribute to those who had made personal and those who have made the ultimate sacrifice. The Invictus Games featured 500 competitors from 15 nations: Afghanistan, Australia, Canada, Denmark, Estonia, France, Georgia, Germany, Iraq, Italy, Jordan, Netherlands, New Zealand, United Kingdom and the United States of America. We have reached a point where our society is so interested in happenings like these that the games were televised on ESPNU. The courage and strength of these individuals were on display for the entire world to see.
The entire United States team of athletes gather on stage during the closing ceremony at the Invictus Games, Thursday, May 12, 2016, in Kissimmee, Fla. (AP Photo/John Raoux)
It is my feelings that these and other events in our society show that The Times Are A-Changin’ and most people are becoming more receptive to those with differences regardless of how they present themselves.
Posted in Ability, Adaptive Technology, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friendship, Observation, Reality, Recreation, Sensitivity, Stuggling, Wounded Warriors
Tagged adapting, control, Courage, life lesson, lifestyle, natural environment, physically challenged, Recreation, relationship, society, using your mind
Within recent days I’ve received emails from several friends all struggling with the challenges presented to them by their disabilities. Of them, I am the oldest and I’m pretty sure I have been dealing with my disability the longest. I wish I could do something or make a potion that would make these challenges disappear. But, I know, as they do, that dealing with these crises is not that simple.
Andy and his grandson
Early on, after my injury, it was so important to me for people to understand that my injury was the result of an act of nature rather than a situation I had brought on myself by poor behavioral choices (i.e. Drunk driving). I didn’t want people thinking he got what he deserved. I was always grateful that my quadriplegia was the result of my pursuing an activity that I loved. Even though I was standing in waist deep water when caught by the wave I had actually been body surfing for several hours. A couple of the emails were from people who had been injured while mountain biking. Another was result of the onset of cancer and complications after a stem cell transplant. All causes were out of the individuals’ control. Why them, why me, these are questions we may never find the answers to. Personally, I feel all my pre-accident life was a preparation for my life now. It is comforting to me to think Handihelp, the blog and my public speaking may be helping others, which is all I wanted to do when I became a teacher.
What can be done, what words can be said to ease the physical and mental struggles that those of us in the disabled community deal with almost daily. It’s been my observation over the years that the best “solution” lies in the individual’s mental makeup. The single most important factor is an attitude which can be manipulated. If you look at my early blogs, most of them deal with that topic. When speaking to groups there are a number of observations that I have made over the past 17 years that I believe will be helpful in putting life and life challenges in perspective.
* Life is not fair and owes us nothing.
* Anger, over time, is detrimental to moving on.
* Life is precious; each day is a gift and one should take some personal time each day
to enjoy it.
* Life can be good again, enjoyable again, but it will never be the same. The
sooner a person realizes and accepts that, the better off they will be.
* The most powerful “tool” we have in adjusting to our situation is our mind/attitude.
* It may be difficult, but to ask for help is not a sign of weakness, and
there are many people who wish to help, but you may have to take the initial step.
* Love is an amazing thing, the more one gives, the more one has to give.
* A pet can play a major role in the life of an individual with a disability.
* Love makes everything easier.
* You can’t do it alone. Friends make our lifestyle much more bearable.
* There is a solution to most of the challenges one faces. It’s just a matter of how
much thought, time and effort you are willing to commit to finding it.
* Frustration and struggle will always be part of this new lifestyle.
* Nothing comes without sacrifice.
* Advice is easy to give, but much more difficult to take and even harder to act on.
* Laughter is essential.
* We are all stronger and more capable than we think.
* Life is full of risk.
What a comfort she was
Will this help others? I hope so, but it has helped me.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Love, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, Courage, depression, dietary considerations, life lesson, lifestyle, physically challenged, quadriplegia, using your mind