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
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
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
Take a minute and try, try hard, to imagine sitting in a chair for 12 hours (a day), 84 hours (a week), 2,520 hours (a month), 30,240 hours (a year), and 302,400 hours (a decade). I could keep going, but I hope by now you’ve got the point. This is not a “timeout” punishment. Can you imagine the repercussions today if the teacher made a child sit in a chair all day? It is also not cruel and unusual punishment that might take place in Guantánamo Bay. This is just a situation some of us in the disabled community find ourselves in. While in the chair you can’t leave to go to the bathroom or get up to go to the dinner table, you’re there till taken out. Thank God someone, a long time ago, figured out to put wheels on the chair so we can at least move around. Depending on the level of injury travel can be initiated with the hands, a joystick or a sip puff device. With a sip and puff device the individual controls the movement of the chair by sipping or puffing on a straw like device that is in their mouth.
Some individuals adjust to the situation better than others. Usually, it takes time. Looking back on my life prior to my injury I have the impression that rarely did I ever see individuals with serious disabilities acting happy. In my memory most seemed old and very unhappy (not you Ami). I purposely try to be animated and positive when out in public. Generally speaking, the other few wheelchair bound individuals I know often present in a similar manner.
At times, I wonder if some people in the able-bodied community misinterpret this behavior, thinking maybe it’s not that tough to be in a wheelchair. Often when thinking about this the words Bob Dylan sings in one of his songs comes to mind “Did you ever see the frowns on the jugglers and the clowns when they did their tricks for you?” To be in the chair day in and day out is anything but easy. Most people never see the struggles that go on physically and mentally each and every day. To have made the adjustment to living your life with value and dignity while dealing with a major disability is never easy. Every day is a struggle! Some days it’s easier to adjust than others. Some of the special days make most of the other days bearable. But let me assure you if you’re not in a chair you have no idea.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, society