Category Archives: Behavior

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.

SEARCHING FOR SIMPLICITY

It was already a little after 10 AM when I rolled out on our deck. I follow a similar ritual almost every morning. It begins by my trying to warm my body. Direct sunlight in good weather and the fireplace in winter. Next is my intake of caffeine, a bottle of diet Mountain Dew and a cup of coffee to get my body working for the day. It is also a time when I muse about what is going on in my life, the world, our country or whatever. It was immediately obvious that this was going to be the nicest day of 2018 so far. Bright sunshine, no wind and the temperature that was predicted to climb to around 80. My eyes wandered to the nesting boxes not far from the deck and I noticed a swallow sitting on one of them. In the next instant another one came darting out of one of the box and landed in the flat area around my garden boxes which was closer to me. Watching I realized it was the female and she was gathering material to build her nest. She’d pick up some dead grass or weed, fly back to the box and repeat the process over and over again. While she was doing this the male sat on a nearby box seemingly aloof to the whole process. Typical my wife would say. Occasionally, she would fly up and perch next to him seemingly to confirm their relationship, then they would take off into the air darting to and fro seeming to celebrate their existence.

Male Swallow

Male Swallow

I began wondering what it would be like to live a life that was that simple. Fly north in the spring, build a nest, raise your young, raise a second batch if there were time, then fly south as the cold weather returned. Swallows must’ve been doing this for thousands of years with little deviation.

At 75 you would think that one’s life would be getting simpler. However, the exact opposite seems to be true for me. It’s not like my thoughts are complicated by the fact that I’m in the twilight years of my life because death does not weigh on my mind. I have no idea what will happen to me when I die, but the one thing I know is that I’ll be out of this damn wheelchair. Living seems to be complicated by many factors for me. The thousands of daily frustrations that come along with spinal cord injury. They don’t seem to be getting better. My desire to enjoy as many of the activities that provide me quality of life. The ebb and flow of relationships in my life seems to be a constant strain lately. Sitting on the deck in the warm sun I’m jealous of the swallows for their seemingly simplistic existence and their love of life.

Fly By

Fly By

Over the Edge

South Jeff Plungers

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

Midtown Towers

Midtown Towers


 

 

Museum of Failure

“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

Harley Davidson Perfume

Marlboro Ice Cream

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

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.

Life As An Iguana

If you’ve been watching the news during the recent invasion of arctic air deep into the United States, you’ve probably seen or heard of iguanas in Florida falling out of the trees seemingly frozen to death. However, wildlife experts cautioned against making the mistaken assumption that these animals are dead. While there seems to be no respiration or heartbeat they are alive and if the weather warms up in a few days they will come back to life and resume their normal activities. What is causing this phenomenon is a condition known as poikilothermic. Poikilotherm is a characteristic among most reptiles in which their body temperature is determined by their environment rather than by their body’s ability to produce heat. They are cold blooded. When the iguana’s temperature drops below 30 degrees they can no longer carry on normal activities including holding on to a branch. We, on the other hand, are members of a group of animals who are known as homeotherms (warm blooded) meaning our body temperature is controlled by the body itself regardless of the environment we happen to be in. Being able to regulate body temperature is a major reason humans are found all over the world regardless of climate type.

Frozen Iguana in Florida

Frozen Iguana in Florida

Iguana fallen out of tree

Iguana fallen out of tree

Quadriplegia brings many changes to the body most of which able-bodied people are totally unaware of. One of the most serious is that our body loses the ability to control its temperature. This can lead to an extremely serious condition known as Autonomic Dysreflexia which can be life-threatening very quickly. The body of someone who has become severely paralyzed loses the ability to sweat or shiver. Each of these body functions is critical in helping to regulate body temperature. For a person with quadriplegia on a warm day their body cannot prevent its temperature from rising. Worse than that is the individual has no idea that his temperature is reaching a critical point. This threat forces many of us to spend much of a beautiful sunny day indoors. A cold environment causes a lowering of body temperature which is just as serious. Unfortunately, the temperatures do not even have to be extreme for these conditions to occur.

Another effect of this phenomena is that a person with quadriplegia is almost always cold. Even on relatively warm days unless they are in direct sunlight their bodies give them the sense of being cold. Probably 360 days a year I can be found with a knit hat on my head and at night when I go to sleep, I always have a small hand towel draped over my head. It’s hard to understand how a body which is supposed to have little actual feeling can have the sense of so much phantom feeling and pain.

Soaking Up The Sun

Soaking Up The Sun

Normally when iguanas wake up in the morning they make their way to a spot that has direct sunlight and remain there until their body temperature rises high enough for them to pursue their effort to secure food. Just like iguanas when I first get up on a warm day I go out and sit in the sun and rejoice as my body warms up. While you will not find quadriplegics dropping out of the trees on a cold day you can bet they are always struggling to stay warm.

Life As An Iguana

Life As An Iguana

Open Letter to A Good Friend

Steve & me at Payne LakeMaybe 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.”

Dreams Really Can Come True

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.

Marge

Marge

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

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.

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.