The Assistant Director of Therapeutic Recreation at a nursing home several hours from my home sent me an email a couple weeks ago. She wrote “I recently started a support group for some of our residents who are struggling to cope with depression and loss of independence related to having had strokes. At our last meeting, the conversation turned to mobility and adaptations. One resident was feeling hopeless about his lack of ability to do things he used to do. They were interested to learn more! I am reaching out to see if you would be interested in setting up a video conference to guest speak at one of our meetings and offer advice, encouragement, answer questions, etc.”
We had the meeting earlier this week and it was one of the most positive activities I’ve participated in in a long time. I showed a short video which talked about what had happened to me and the things I had learned over the last 20 years that help me cope today. After the video there was time for questions and answers which I personally found highly rewarding. There was a closeness that was brought about by being able to address questions face-to-face as the laptop in the nursing home was moved to each individual when they asked the question. As I interacted with these individuals, I began to realize that they were still in the early stages of the onset of their disabilities. So, I decided to share with them some of the struggles I had early on, and at times still have, adjusting to the new situation I found myself in. Two questions plagued me early on. The first was would I still be a positive contributor to society, or would I just occupy time until I passed away. The second and much more important question was would I ever be able to return to the activities that gave me quality of life. Years later, I realized the answer to both of those questions resided in me. What happened to me in this new life would be the result of how I chose to deal with the situation. I often refer to that choice as choosing Helplessness or Empowerment.
I am not a specialist, authority, or counselor on the topic of disability, but having been there, I feel confident in talking about what I believe is a “normal” process that many people go through with the onset of their disability. I felt very strongly that I should share some of the painful experiences I went through early on during rehabilitation. Life seemed hopeless, depressing with no promise of a solution. For a while I seriously considered Suicide and took a plan to the precipice before I realized how totally selfish that was. People need time to grieve. They have lost the function of a part of their body. Chances are good their life will never be the same. That idea can lead to panic and insecurity as to what the future holds. Individuals need to understand that these feelings are normal, and they have every right in the world to feel depressed and hopeless in the beginning.
However, the grieving process must be passed through and life must begin again. It is possible for many to regain the skills necessary to participate in activities they enjoy and provide them quality of life. This recovery, like so much of their new life, is part of a process. It doesn’t take place in days or in months, but it will take place with the proper attitude over time.
If an individual wants to be strong physically there are all types of programs and exercises, they can do to increase their physical abilities. Likewise, if a person wants to be strong mentally, they must work on that to build up their mental strength. The process involves steps like accepting what has happened, concentrating on abilities, not disabilities, commitment to move on, getting rid of anger and resentment. Realizing things will never be the same, but a new life can be meaningful and rewarding. Activities which can help encourage these realizations included meditating, Imaging, counseling and support groups. All these changes, in turn, can help lead to individual empowerment.
Posted in Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Independent Living, Observation, Reality, Sensitivity, Stuggling
The other night, Wednesday 28, I turned on the television expecting to find a pre-game show for the basketball game between Syracuse and Ohio State. I enjoy watching Syracuse basketball and lacrosse and rarely miss a game. However, rather than the pre-game show ESPN was playing a tape of Jimmy Valvano’s acceptance speech for the inaugural ESPY Award. ESPY stands for Excellence in Sports Performance Yearly Award and it recognizes individual and team athletic achievement and other sports-related performance during a calendar year. The ESPY is also called the Arthur Ashe Courage and Humanitarian Award. Jimmy Valvano, for those of you who don’t know, was a young, flamboyant college basketball coach from the late 1960s through 1990. The high point of his career was when his team the North Carolina State Wolfpack defeated the heavily favored University of Houston Cougars in the NCAA Championship Game in 1983. I was inspired and brought to tears again and decided to edit and republish an old blog I had written December 4, 2013.
The end of that 1983 NCAA Championship Basketball Game has also been called one of the most exciting finishes in a college basketball game ever. NC State was a huge underdog and most experts believed had little chance of winning. With less than 30 seconds left and the score tied NC State had the ball and were desperately trying for one last shot. With just a few seconds left a player shot the ball 30 feet from the basket and it was obviously going to fall short. As the ball approached the basket with just a second or two left on the clock Lorenzo Charles, one of NC State’s forwards, jumped up caught the ball in midair and slammed it home for the winning basket. The final score was NC State 54 Houston 52. What ensued has become a classic in NCAA championship lore. Jim Valvano ran out on the court, among the celebrating players, running from one spot to another waving his arms as he later said, “looking for someone to hug.”
In 1992 less than 10 years later, Valvano was diagnosed with terminal cancer. As a result of his courage and positive attitude he was chosen as the first ESPY Award recipient On March 3, 1993, shortly before his death, he gave his now famous acceptance speech. It was also at this time he and ESPN created The Jimmy V Foundation for Cancer Research, an organization dedicated to finding a cure for cancer. Jim Valvano died a little over a month later at the age of 47.
One must wonder, as I’m sure many of us do, if he ever thought life was unfair. In 1995 a 20-year-old Boston University freshman went out on the ice for his first shift as a varsity hockey player. Eleven seconds later he was a quadriplegic. Travis Roy has said “There are times in our lives when we choose our challenges and other times when challenges simply choose us. It is what we do in the face of those challenges that defines who we are, and more importantly, who we can and will become.”
How did Jim Valvano accept his challenge? How does each of us except ours? Below is a link to the YouTube video where you can watch Jim Valvano’s ESPY speech and if you have never heard it, I encourage you to listen. Oh, by the way Jim Valvano announced at the banquet the Foundation’s motto would be “Don’t Give Up…. Don’t Ever Give Up.”
Since its inception the Jimmy V Foundation, as of August 2017, has donated more than $170 million to cancer research. 100% of the donations goes to cancer research. You can donate at Jimmy Valvano Foundation .
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Education, Friendship, Humor, Love, Reality, Sensitivity, Stuggling
Tagged control, Courage, lifestyle, relationship, risk, society
Most people have no idea what it is like to live with a disability. Every day is a struggle in itself. Some individuals are aware of the obvious challenges, most are unaware of the less obvious majority. I recently read that John McCain, whose range of motion had been severely limited by the torture he received while a prisoner of war in Vietnam, had to have another person comb his hair because he could not lift his arms above his shoulders.
Senator Tammy Duckworth
Many disabilities are visible at first glance. If the individual, when in public, presents well, seems to be in “control” and well-adjusted to their situation people often think to themselves, that’s wonderful or will say “Wow, I could never do that!” Neither could be further from the truth. First, anyone has all the abilities they need to deal with a severe crisis, already in each one of us. When talking to students I will often ask if people like Gabby Giffords, Tammy Duckworth, Jaycee Dugard or John McCain, individuals who not only survived horrendous challenges in their lives, but they went on to become examples of strength and fortitude to others received something special at birth that nobody else got. If the answer is no, which of course it is, then that same strength and courage is in each of us.
Returning to the person with the disability who presents so well in public, it is easy to understand why people come to believe that’s what their day to day life is like. For most, like quadriplegics, nothing could be further the truth. Every day involves a varying degree of challenges. There is always frustration, anxiety and at times depression. Lack of strength and range of motion issues is a constant problem for many. Pain, of varying intensity, including phantom pain in areas that have been amputated or paralyzed is not uncommon. Individuals with high spinal cord injuries (SCI) bodies are unable to control their body temperature, have trouble regulating their blood pressure and are usually constantly cold regardless of environmental temperature. There is a myriad of other issues both mental and physical which present from time to time. This is our “normal”. However, one should remember, no matter how bad things are many can pull themselves together when in public which just helps perpetuate the myth. But, for the individual there is always something to deal with.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Independent Living, Observation, Reality, Stuggling, Wounded Warriors
Tagged Courage, depression, lifestyle, physically challenged, relationship, society
Being lifted into place
Looking down at the floor of the roof in front I saw some items that, even though it had been over 20 years, their names came rushing to me. Prussik loop, spectra cord, a Figure Eight on a bight and a couple of daisy chains. These were things I had used extensively in the 1990s, when I ran a challenge course for the local school district where I taught. My mind began drifting back to that time. Climbing and rappelling were part of most days when I would be hosting one of the grades from the school. I could remember the feelings of freedom, self-control and exhilaration as I controlled my descent to the ground. Suddenly a loud voice broke my daydreaming and I was quickly brought back to reality. It was June 9, 2018 and I was being prepared to rappel off a 16-story building in Watertown New York.
Three years ago, my good friend and colleague, Steve Robinson had gone Over the Edge (OTE) as part of an annual fundraiser for the United Way of Northern New York. He dedicated his fundraising efforts to me because he knew I would be doing it if I could and nobody thought I would ever rappel again. His effort got me thinking and I began to wonder if maybe I could do it. I knew there would be lots of issues and lots of reasons to say no, but I decided to try. To my surprise the two major organizations involved, the United Way and the people from Over the Edge, were very receptive. Over the past 19 years I had become used to people telling me there was no way I could do this or that.
The rappel today was going to be different. Not only was there new hardware like the RIP descender, but I was going to be doing it in my wheelchair. I felt this was an opportunity to pay back to the people of the community that had given so much to my wife and I over the past 19 years. The United Way donates money to a number of charities and local groups. I also hope my going Over the Edge would remind everybody that we are all capable of doing much more than we think we can. That lesson has been driven home to me time and time again since I became quadriplegic.
Rappelling down Midtown Towers
Family members and most of my friends truly thought this was crazy. Why, many of them asked, place yourself in this risky situation? None of them realized the risk was totally perceptional. My descent would be one of the safest things I have ever done. With the help of several skilled professionals and soldiers from the Sergeant Audie Murphy Club from Fort Drum I was prepared and placed into position for my descent. Because of my limited range of motion another person would be going with me to help facilitate a smooth descent.
As I began my way down I happened to glance a few blocks away and notice an individual sitting in a wheelchair watching me. I could only wonder what they were thinking, but I found myself wanting to yell to him “It all starts with a dream.”
In closing, I would like to recognize the people who helped make this possible Bob Gorman of United Way, Robert Pitkin of Over The Edge, Les Brook of Marra”s Homecare, Bruce Wright of Guilfoyle Ambulance, my good friend Steve Robinson and all who donated the United Way of NNY.
Posted in Ability, Adapting Equipment, Adaptive Technology, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Observation, Reality, Recreation, The Struggle
Tagged adapting, control, life lesson, outdoors, physically challenged, Recreation
South Jeff Plungers
The United Way of Northern New York and Over the Edge is providing me with this unique opportunity to go Over the Edge in my wheelchair. Marra’s Homecare and Guilfoyle Ambulance are also helping to make my participation possible. In addition to giving back, I want people to understand that disability does not mean inability. The greatest limiting factor we all face is our attitude. Henry Ford once said, “If you think you can do a thing or you think you can’t do a thing you’re right.”
In June I will be part of a 4 person team of retired South Jefferson Central faculty members who will be *rappelling off a 16 story building in Watertown, NY. This is a geat chance for me to help many of the communities who have encouraged and supported me.
* lowering oneself by use of a rope attached to the body off cliff or building
“The Museum of Failure is a one of a kind international collection of more than 100 innovation failures. For every successful product corporations put on the market, there are many failures behind it.”
The other night, while watching the nightly news, I saw a report on the opening of the Museum of Failure in Sweden. It’s about time. There are many displays in the Museum include the Ford Edsel, Google Glasses and Colgate Kitchen Entrees to mention a few, but without a doubt, my favorite is Harley Davidson Perfume. While the Museum is devoted to failed innovations made by famous corporations, there are however still many lessons to be learned here about failure in general.
Harley Davidson Perfume
Marlboro Ice Cream
When speaking to groups the concept of failure is something that I try to encourage all people to understand better. It is important to remember that an individual’s attitudes and reactions to failure are learned. That is easily proven by looking at a young child learning to walk. Toddlers have no concept of failure. Imagine if they did and decided after standing and falling many times, it wasn’t worth the effort to keep trying. Obviously, they would never learn to walk. One Sunday night while watching an interview on 60 Minutes with Lebron James the interviewer asked him if he could give one piece of advice to young children watching what would it be. Without hesitation, he responded “Don’t be afraid to fail.”
Speaking to a group
When I was young I often looked at failure as an end in itself. It greatly affected my interactions in just about every aspect of my life. Venturing into a situation where the possibility of failure was great was carefully weighed. Even when I began teaching I was hesitant to try new and different ways to reach and involve my students. Fortunately, after being frustrated by what I perceived as an inability to engage all my students, I began trying new and different methods and strategies. Some were successful, and some weren’t, but learning was taking place in both cases.
For any individual, especially those with a disability, I believe it is critical to look at failure not as an end, but rather an opportunity to learn, grow and move on.
Many individuals who are disabled have some type of compromise of motor skills. It’s not the loss of the coordination that is the problem, it is the loss of the skills associated with it. However, those skills can be replaced! A society usually has a few accepted ways of accomplishing an activity (i.e. Catching a fish). However, looking at all societies there are a tremendous number of other ways developed to accomplish the same or similar activity. If attempts to develop a new skill fails and that is accepted as a final result anybody would have a hard time moving on. On the other hand, if failure is looked at as a temporary outcome to be learned from and grow, the chances of developing the new skills necessary in an individual’s life become possible. So, don’t let failure prevent you continuing from persisting to progress. Start looking at failure as an opportunity.
Oh, and the Museum of Failure is such a great success it’s going on tour.
Posted in Ability, Adapting Equipment, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Independent Living, Observation, Reality, Stuggling
Tagged adapting, control, life lesson, physically challenged, society, using your mind