Category Archives: Reality

You’re the One That I’ve been Waiting for Forever

This is a line from a song by the Stylistics called “Betcha By Golly Wow” that was a hit in 1972, but it sums up my feelings for today. What have I been waiting for forever? Well, not really forever, more like since early October 2018.

One of the symptoms of a quadriplegic is the body’s inability to control its internal temperature. An individual  is COLD almost all the time. The one daily exception is when you wake up in the morning and that ends as soon as you expose your arms. For one who is supposed to have no feelings below his arms I have all kinds of feelings below my arms and the most constant one is cold shivering. Almost always I wear a knit hat. Even in bed at night I have a hand towel draped over my head and sleep that way year round. Dressing with three or four layers of clothing on top and two on the bottom makes little difference. Mornings, when the weather is bad, I spend the first hour or so in front of the fireplace.


Today April 17, 2019 is the day I’ve been waiting for (it seems like) forever. Fifty-eight degrees, no wind and few clouds. Out I went to my usual spot next to the garage, tilted my wheelchair back and basked in the morning sun. Its heat bathed my body. My body was warm for the first time since early October. Early man had no greater appreciation for the sun than I do today. This day is so magical I have written several blogs about it before. (“Sittin’ In the Mornin’ Sun  &  Life As An Iguana”)

Unfortunately, this experience is limited. As the sun rises higher in its orbit, we reach a  point when the heat becomes dangerous to our well-being. Since there is no control of our internal temperature we can quickly become overheated leading to heat exhaustion or worse yet, heat stroke which can easily lead to Autonomic Dysreflexia which is a life-threatening emergency. Almost always we do not even know it’s happening until it is too late. The older I get the more I realize it’s the simple things in life that are the most important. So, what is the message: Carpe diem.


Ambivalence of Recovery

Why Try?

People with disabilities make up the largest minority group in the United States. Unfortunately, its ranks are growing every day. People who experience the onset of a disability are immediately faced with a variety of challenges. Many, I believe, go through a period of mourning or grieving, depression and sometimes even contemplate suicide. They have many questions which at first seem to have no answers or solutions. Probably the most common one is “Will my life ever be the same?” The answer in most cases, unfortunately, is no. Individuals who have suffered moderate to severe disabilities will never be able to return to life as it once was. However, after a period of mourning and sad 2rehabilitation they must begin to develop and adjust to a new lifestyle. In the beginning many people often try to solve the challenges they now face with the same techniques they did prior to their disability. Most of the time because of changes brought on by the disability the “old ways” don’t work anymore. To continue this type of approach can lead easily to frustration in the short run, discouragement and failure in the long run. Some individuals seem willing to accept failure as the ultimate outcome. Over time this acceptance can become a way of life. Believing, if I tried to do this and can’t do it, why should I try something else because I won’t be able to do that either. After a while I believe this can become, what I like to call, learned helplessness and the individual retreats to a highly sedentary lifestyle. The disability is now dictating how they live.

Why Not?

The onset of a disability often results in the loss of some part of the body’s “normal” function. Over time and therapy an individual could see the almost complete return of function, partial return or little or no return. Far more important than the loss of normal body function is the loss of the skill that the function facilitated. So, it is the skill that must be replaced, and make no mistake, most skills are replaceable. The important point here is skills are almost always replaceable. From a cultural point of view, there are normally several accepted ways to perform a certain task, to the exclusion of many others. If the disability prevents an individual from performing a task, a new skill for completing that task must be found. This can be accomplished by adapting equipment and/or finding a totally new way of doing it. One of the important characteristic critical to moving on is attitude, especially the attitude toward failure. Most people don’t realize that one’s attitude about failure is learned. Bsaby ealA young baby trying to turn over, crawl or learning to walk has no concept of failure, imagine if a baby tired of failing all the time accepted failure and stopped trying. They would never learn to roll over, crawl or walk. Accepting failure as part of a bigger process enables the individual to learn and continue moving forward. If attitude toward failure is learned, it can be unlearned or at the very least modified. In reality, there are many alternative ways to solve a particular challenge. Progress may be slow at first, but over time they become enabled and take control of their future called learned empowerment.



Putting Risk in Perspective

Many of us fool ourselves into believing we have some special persona, especially men, that we are some type of rugged, resourceful, independent character in complete control of our lives i.e. Daniel Boone or Davy Crockett.

For most individuals with a disability this concept hits even closer to home. In rehabilitation people struggle to regain some semblance of independence and control over their new situation. It’s not easy, but with great effort and persistence the idea develops and after years we fool ourselves into believing it.

Andy's dog Marz

Andy’s dog Marz

Last week my friend Andy, from Utah, who was kind enough to share his story with us, took his dog Marz for a “walk” as he often does in the winter. The “walk” consists of him dropping his dog off on a road that’s not used much and then drives on and Marz trots after the truck till it stops and then hops back in. Everything went according to plan. After Andy had driven a while he stopped, and the dog jumped in.   I’ll let Andy take it from here:

The dog had a good walk and I was backing up to an area where I could get turned around. There is plenty of snow up here and I got one back tire off the road and got stuck. If I could have gotten out of my pick-up and shoveled, I could have gotten out in 5 minutes. Not so and unfortunately, I was just out of cell phone range. That was around 4:30 pm Tuesday. I figured somebody would eventually come, it took a while though. I had less than a half of a tank of gas and felt I should ration it as much as possible. It got dark and the coldest I saw it get was 8⁰. It is really kind of amazing how warm you can keep a pick-up with you and a shaggy dog inside. Marz was concerned, she knew something was up, and after her initial romp outside, she would not leave the pick-up. She is also trained not to get into the front seat and there was no way to cuddle with her. So, Tuesday night I slide over to the passenger seat because it has a heater. I kind of made it through the night unscathed. I listened to 8 hours of a book on tape. The stars were great!

Andy in his truck

Andy in his truck

My problem was catheters. I did not bring my cathing stuff and by about 10 pm things were already getting uncomfortable. I was pretty clammy the results of dysreflexia but dealt with it. I think the dysreflexia was good and bad. It kept my heart rate up helping me stay warm, but was not very comfortable. I did have one lubricated, self- contained catheter. Unfortunately, it had been in my truck a long time and was not very lubricated anymore. I struggled for about an hour in the dark trying to get that thing in with no success. Without my tools and fingers that don’t work very well it is hard. So, by morning I had leaked all over. I cannot begin to tell you how much I hate the smell of pee. It is really stinky when you sit in it for hours.

The sun comes up and brings optimism and much needed heat. I was not in the direct sun and my pickup read 16⁰ at 1 pm and 30⁰ at 5 pm. Yes, I sat there the whole day on Wednesday, and nobody came by. I am not for sure if it was a mistake or a good thing, but I snagged that old catheter and slowly was able to work it in. Lots of spit and I rubbed it with the urine from my underwear. How is that for being resourceful. It still was very stubborn. I can’t imagine what I did to my urethra by doing that. And of course, it definitely was not a sterile procedure. I did drain about my max of 500 ml’s. I had nothing to drink either or pills, but I think I resolved my full bladder issue.

I confess I was a little depressed when, after a whole day nobody came by and I knew I had to make it another night. It is amazing how fast a Urinary Track Infection (UTI) kicks in by introducing germs that way. By 8 pm I was shaking terribly, had terrible cold sweats and knew my butt was not happy anymore. 24 hours in a pickup seat sitting in your own urine is not good for the butt. I knew I was in for a long bad night.

Fortunately, my friends, that call me all the time got worried when I had no cell signal. At 10 pm they called the sheriff. The sheriff was able to ping my last phone signal. Search and rescue found me pretty quick. I told them to just take me to the hospital. My body temp was 90⁰ at first and my blood pressure was pretty high. I told the ER nurse going in I was pretty rank. I had peed all over myself. They warmed me up, cleaned me up, gave me an antibiotic, patched my butt (it was not too bad), and sent me on my way. …

There can be this huge helpless feeling at times being in a wheelchair to the point of breaking you down. I hate having my disability dictate how I run my life. All my friends said just send them a text and let them know where I am going and let them know I made it. I choose to live my life the way I do… I do numerous things that could get me in trouble which the able- bodied person can’t even begin to understand. I don’t want to text somebody every time I push the limits a little. But I definitely do not want to die freezing to death. At least not anytime soon, it was hard. If I am freezing to death, I don’t want to have a fever at the same time or a pressure sore forming on my butt. Really made it complicated. I don’t think I would have had another night in me, but I never lost hope somebody would show up. Makes me feel lucky I have people that love and care for me.

So, do you think that warrants cheating death. Maybe not quit there but getting close. If my truck would have quit working it would have been slow and more painful, probably death. So, what do you think; am I a guy that you may think is just too crazy or stupid? I think one goes hand in hand with the other. My motto is we are here to live life, not watch it go by. Being in a wheelchair brings that to a whole new level. I do think there are ways to mitigate risk. Trying to explain that to an able body person is really hard. Fear can paralyze you, but gives us the opportunity to excel. I definitely think very few people want to live with the risks I do. I understand that and that is okay. I don’t want to live a sedentary lifestyle.”

Risk exists for all of us. For an individual confined to a wheelchair who is determined to be active risks can catapulted one back to the reality of how helpless and dependent we really are. For many risk worth taking because as the Poem says: “Only a person who risks is free.”

Andy’s survival is a testimony to his resourcefulness, but as he says “risk can be mitigated.” There are several companies which, for a nominal fee, will provide a pendant which can be worn and when activated can locate your position anywhere in the United States and send help. A small Survival Kit can be put together and carried on a wheelchair or in a glove box of a vehicle. The lesson here is to prepare yourself ahead of time not, not to risk.

Andy Kayaking Thanksgiving Day 2018

Andy Kayaking Thanksgiving Day 2018

Starting Over

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.”

Video Conference

Video Conference

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.

Don’t Give Up…. Don’t Ever Give Up

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 .

The Struggle Within the Struggle

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

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.

Over The Edge – Literally

Being lifted into place

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

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.