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
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
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
This is the title of the new book written by Gloria Vanderbilt and her son Anderson Cooper. This morning they were on Live with Kelly and Michael. I thought the book title was an amazing metaphor for life. Years ago I wrote a blog called Talks Cheap – Test Time, which was about my struggle between positive attitude and depression / suicide. At the time, my blog was being carried by a website in Australia. They refused to publish it because not only did it talk about suicide, but it also mentioned some ways I thought about doing it. They felt it was a bad idea to share this with their readers. I argued with them that it is important for others to know that they are not alone in their struggles for a meaningful life and that life is full of challenges. They still refused, so we parted company.
I believe it is difficult for most able-bodied people to understand the roller coaster of emotions many individuals with disabilities go through on a daily basis. When I am with others, regardless how bad I feel, I am always able to project the image of one who is in control and well-adjusted to my situation. But, like the rainbow that comes and goes, when I am alone, or just Marge, at times the frustrations just seem to be overwhelming. It’s difficult to reach out to others because of their lack of understanding or I don’t want to project the image of one who is struggling to cope.
Many factors prove to be a continuing struggle which is often difficult to handle. Some of the frustrations are the same that were present prior to my injury, but the coping mechanisms I used are no longer available. When I was younger and getting “hyper” my kids would say “Dad, you need a physical fix”. I could go jogging, biking, kayaking or hop in my truck and drive up into the state forest land by myself. None of those are options anymore. The spontaneity is almost completely absent from my life. Plus, there are now new factors that compound the old ones. Weather is one, health and fitness for a couple of others. Even though I was sequestered most of the winter and it’s now April I’m still housebound. Part of my frustration right now is that it’s sunny and absolutely beautiful out, but the wind chill the last few days has been in the middle teens and this pattern is supposed to continue. Add to this the almost constant nagging health issues that happens to be present most of the time or that I’m unable to get my weight under control and you end up with a situation that seems almost overwhelming. At times like this, it’s almost impossible for me to motivate myself to do anything. The thing I want to do the most is to be out in the natural environment and that’s almost impossible. People have suggested going shopping or out to eat or to the movies, but none of these are what I really want to be doing or need to do to quiet the demons.
This blog is one attempt to relieve some of my frustrations. Knowing that there are others who will read this and understand what I am saying is comforting. To know there are some who will read it and say, “Oh, I’m not the only one struggling with these issues” also makes me feel better. After all, we must remember that the rainbow comes and goes!
Posted in Ability, Attitude, Behavior, Community Inclusion, Disability, Education, Friends, Friendship, Nature, Observation, Reality, Sensitivity, Stuggling
Tagged depression, natural environment, outdoors, physically challenged, quadriplegia, using your mind
In 1957 a Rock& Roll group named the Chantels had a hit called He’s Gone. Part of the lyrics are below:
“He’s gone (he’s gone)
I don’t know where
But he’s gone (he’s gone)
I must have done something wrong
He is gone (he’s gone)
I’m sorry (he’s gone)
For what I’ve done
To make you leave me…”
To hear the song, click He’s Gone.
Yesterday was Easter Sunday. Marge and I decided to go down to Lake Ontario. There is a beautiful wheelchair accessible trail not far from our home. It was sunny and around 640. Lake Ontario is quite large and the vista is similar to being at the ocean. It always reminds me of how insignificant we are in the grand scheme of things and I love that. As I sat there looking out over the vastness of the water I had a strong reminder that he was gone. He’d been gone for some time, but the memory still engulfed me. Strangely enough, I can’t remember him anymore. I guess it’s a way to protect myself. In the beginning I missed him all the time and was very bitter he had left me. For years I had very vivid dreams of what it was like when he was around, but that has changed too. Like the song says, I’m sorry for what I’ve done to make you leave me, but I know it was nothing that I did that made him leave.
I realized yesterday he really had gone and that I can’t remember him anymore, his walking, jogging or spontaneous lifestyle, etcetera. As the Chantels’ sing “I don’t know where, but he’s gone” and don’t really care anymore. My life is very different without him and that’s okay. However, I now truly believe and that’s very reassuring that he left for a reason.
Posted in Attitude, Behavior, Community Inclusion, Disability, Nature, Observation, Reality, Recreation, Sensitivity
Tagged adapting, control, Lake Ontario, life lesson, natural environment, physically challenged, quadriplegia, Recreation, society, using your mind