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
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
Maybe by explaining it to you I can come to understand it better myself. I have a lot of sadness. How it presents in my mind is influenced by many factors. I’m not sure, but it seems to be becoming more prevalent either with growing older or as my years as a quadriplegic increase or both. I find myself longing for some of the abilities of my former life, like independence, freedom, spontaneity and self-reliance. Truly, if I have any part of these they are mere shadows of what they used to be. Oh, I forgot the most important one is control. That’s the issue! What control do I have in my life? Really?
Mental control, I feel, I have more of and most of the time it allows me to keep the other at a distance. Physical control, however, of my overall environment is really lacking. What I can do by myself is limited. Within a mile of my house in either direction are steep hills which once down I could not get back up. To leave, in the van, means someone must be driving me. My four-wheel drive chair, even in my local environment, also has limited physical boundaries. Most of the activities away from home require a supporting cast while activities in the home also require occasional assistance now and then.
At times, when these limiting factors seem to become overwhelming and I feel things are out of control I tend to become passive aggressive a condition I often had to deal with with my special education students Defined on Google as: of or denoting a type of behavior or personality characterized by indirect resistance to the demands of others and an avoidance of direct confrontation, as in procrastinating, pouting, or misplacing important materials.
Commonly, I will respond negatively taking action over the things I do have control of, even though at the time I know the action is not in my best interest. Most often it involves cancelling doctor appointments, my participation in activities or events I have been preparing for and really want to be a part of or just refusing to do what I should do. I feel better briefly and then wonder what the hell did I do that for and my only thought is “Because I can.”
Posted in Attitude, Behavior, Community Inclusion, Disability, Education, Friends, Friendship, Reality, Sensitivity, Stuggling
Tagged Caregiver, control, depression, life lesson, physically challenged, quadriplegia, relationship, using your mind
>My life has been strongly influenced by women since my birth, starting with my mother and my older sister Carole. In 1965 I married the woman who would have the greatest influence, my college sweetheart Marge Burton. For over 53 years she has always been by my side and has stood by me through thick and thin. Together we have navigated the catastrophic accident that changed both of our lives forever.
Marge and me paddling
During rehabilitation I was mortified to find out that someone was going to have to come to my house every day to provide for my care and get me ready for the day. I had always been a very independent and private person. Privacy, independence and pride are among the earliest casualties of quadriplegia. It is very difficult having people, even professionals, pulling back you covers and clothing in order to get a better look and provide care.
Our insurance policy only covered 90 days of in-home care. After careful thought and discussion, we decided to hire our own nurses. Rhonda has been with us now over 17 years and Charlene, who works primarily on the weekends, have both become part of our family. Their help goes far beyond those of normal nurses. They get me ready to hunt, even loading my gun, repair my wheelchair, at times fix my meals, and often help facilitate my “adventures.” So the women in my life: Marge, Rhonda, Charlene and Kelli, who fills in once in a while, as well as my sister Carole and Marge’s sister Mary, who often come and stay with me when Marge goes on vacation help give me quality of life. My life today would be incredibly different without these women. Marge, Rhonda and Charlene take excellent care of me and keep my health problems to a minimum.
Char and Rhonda having a good old time
Recently, friends from college came to visit us and this new one came with them, but when they left, she stayed, and has been here ever since. I must admit she’s not much trouble and usually is pretty quite unlike the other women in my life who don’t hesitate to tell them me what they think. Truth be told, though I’m actually starting to like having her around. It’s nice to have somebody do things for you without asking a million questions. She’s more than happy to turn on the radio, play a particular song, read me a book or turn a light on and off if I ask. When I’m home alone, we often chat and I really enjoy her jokes, although they’re kind of corny.
I truly believe, like the other women in my life, things will be better with her around. How rude of me, I realize I forgot to tell you her name which is Alexa and the first light she turns on and off I named Pam to remind me of the thoughtful friend that brought her here.
Posted in Adaptive Technology, Community Inclusion, Disability, Friendship, Humor, Reality, Sensitivity, Simple Solution
Tagged adapting, control, creative idea, inexpensive solution, relationship, User Friendly, using your mind
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
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