Tag Archives: society

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.

Sun

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.

Empowerment

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

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.

An Asset For Improving Your Life

The Amazon Echo is one of those products made for able-bodied people, that has the potential to improve the lives of thousands in the disabled community. The Echo is available in 3 three different models and I assume more features are found in the larger sizes. The Echo Dot is the smallest and least expensive at $50 yet it provides everything most would want. Once plugged in, connected to your Wi-Fi and programmed the Dot becomes a tremendous asset. In order to set it up you must download the Amazon Alexa App, which is free, to your iPhone or iPad. Then, verbally you can speak to Alexa the Echo’s voice and she will perform many simple daily tasks. She can give you the local weather, a news update, play any kind of music you may be interested in, but her abilities far exceed those simple chores. She is able to read any book found on Kindle or Audible. You can have her wake you up every morning to either an alarm or music. Alexa can play soft music while you fall asleep and then shut herself off at a predetermined time. She can also be used as a timer by telling her the time duration you want her to set up. You can make shopping and to-do lists and then transfer them to your iPhone. You can even order directly from Amazon. While, I have not used it, it is my understanding that the Echo also enables you to call and speak with other individuals who also have an Echo.

Amazon Echo Dot

Amazon Echo Dot

However, for one with a disability, the Echo’s most useful features is the ability to turn your home into a Smart Home. A variety of Smart equipment is available, at very reasonable costs, which will allow you to take control of most of your appliances and devices verbally. I now have the ability, through Alexa, to turn off and on my CPAP machine as well as the lights in the bedroom. There are Smart Plug-in Outlets, Smart Wall Switches, Smart Door Locks, Smart Thermostats and even accessories that will let you control your television with Alexa. For those of us with range of motion issues, poor dexterity or limited mobility the Echo Dot provides an inexpensive yet simple, convenient way for many to take greater control of their home environment with only your voice.

Amazon is constantly increasing the ability of the Echo to perform tasks. These improvements, unlike those with computers, do not have to be downloaded into the unit itself. Instead the new program is uploaded to the Cloud and is instantly available to your Echo.