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
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
Andy arrived on the 17th of August and left yesterday around noon to fly back to Salt Lake City. Our week together is very special to me. He is much more involved with the disabled community than I am. He is much more outgoing and gregarious than me. Many of those who know me would be surprised by the fact that basically I am quiet, shy and retiring. Having been an educator for over 34 years I am at ease speaking and interacting with groups, but on a personal level I tend to limit myself to a few close friends none of whom are disabled. Andy’s visit is much more unique for me than I believe it is for him. Since we share the same injury level, a very similar outlook on our situation and the love of all things outdoors we are closely bound together.
We always do some different things while Andy is here. This year he went with me to the Outdoor Adventure Day at Fort Drum (the home of the 10th Mountain division) where we manned a booth for Handihelp which displayed many of the adaptive equipment we have made and a lot of pictures of what those adaptions have allowed us to do. It’s always enjoyable to speak with the people who stop by and have questions about our lifestyle and things we’ve done.
With Smokey the Bear at Ft. Drum
One thing we do every year when Andy comes is participate in the Annual Quadriplegic Fishing Derby. In reality, it’s just Andy and me going fishing with our friend Dean of Dean Meckes Charters
and my buddy Steve Robinson or my son Mark. We caught a few fish, but that’s not the real reason we go. The time spent on the beautiful St. Lawrence River and the solitude of being out there is irreplaceable. The other annual happening is our visit with our friends Maia, Maddy, and Tonya Chamberlain for ice cream. It’s a chance for Andy to spend some time with Maia.
Andy with a bass
The most meaningful part of Andy’s visit for me is not the activities that we do, but rather the downtime at home when we can just talk about our situation, lifestyle and the mental and physical challenges we must deal with. This is the only time that I get to talk with someone who truly understands the ramifications of the challenges I face. While I do talk to my friends and my wife Marge at times, no one understands all the nuances that go along with being a quadriplegic. So, the time Andy’s here is like no other.
Andy comes to northern New York because it is much “easier” for him to travel than it is for me. However, we have begun discussing the possibility of my going to Utah and spending a week with Andy and his friends. The idea of it is very seductive.
Finally, I would like to thank Marge for her role in making this week possible and the others who helped make this week so special.
Andy, Maia and me
Posted in Ability, Attitude, Community Inclusion, Disability, Education, Fishing, Friends, Friendship, Nature, Reality, Recreation
Tagged fishing, Lake Ontario, lifestyle, natural environment, outdoors, physically challenged, quadriplegia, Recreation, relationship
At Craig Hospital, where I did my rehabilitation, they talked about how people would react to me, post injury. They said there would be former friends who would fade out of my life and others who would step up and assume a much more significant role. I didn’t realize at the time how true that would be. While some have virtually disappeared, several people have assumed a significantly greater role and others who I barely knew or didn’t know at all have helped facilitate the return of my quality of life. As a C6 quadriplegic my life is one of dependency. I may like to kid myself into believing I have a lot of independence, but the truth is I don’t. I’m dependent on others for my food, hygiene, dressing, even getting into and out of my wheelchair. My wife Marge and my nurses Rhonda, Char and Kelli see to those needs and at times do much more.
Me in the old days
One person, in particular, has really stepped up. He is not the only one, but Steve Robinson, a former coworker has stepped up like no other. Steve takes me hunting, to lacrosse games and does so much more. What would my life be like without friends like him I can’t imagine? Thankfully, I don’t have to.
Does Steve realize the important role he plays in my life? Does he understand what my life would be like without his unselfish generosity? Does he have any concept how impossible it is to find the words to help him to understand how much his stepping up affects my quality of life?
Steve with Andy and me at Blue Mountain Museum
Steve and I dog sledding
Now I have a chance to do something for him. Steve and I worked together on the school’s outdoor adventure course. On September 17th the Northern New York United Way is having a fundraiser called Over the Edge. Steve is going over the edge. Steve wrote “Over 20 years ago a good friend and a former South Jefferson colleague introduced me to the power and excitement of a ropes course. I know that if he could, he would have been one of the first to sign up for this United Way fundraiser. I will be doing the rappel in recognition of my friend and mentor.”
I would like to take this opportunity to ask my friends, if possible to consider making a donation to Steve effort. If so you can go to Steve’s Home Page to donate. Thanks to Steve and all of you.
Celebrating Steve’s retirement with my first beer in over 25 years
Posted in Attitude, Behavior, Birds, Disability, Education, Friends, Friendship, Love, Reality, Recreation, Sensitivity
Tagged life lesson, outdoors, physically challenged, quadriplegia, Recreation, relationship
Those words are the title of the Bob Dylan song written in 1964 which has become a classic. The song discusses societal changes that were taking place. It covers a variety of new attitudes that were going to happen, Dylan believed, regardless of résistance. While the song says nothing about disability or the disabled community I would imagine it would be fairly easy for Dylan to add a verse today discussing societal changes happening towards individuals with disabilities.
Peta-Murgatroyd & Niles DiMarco
Just this month (May 2016) we have seen three sign posts that I would present as examples of what is happening in our society today. The most recent would be the presenting of the Mirror Ball Trophy on Dancing with the Stars to Niles DiMarco, who won the championship despite the fact that he never heard a note of music the entire time. Niles was born deaf, but refused to allow that to stop him from obtaining goals that many would believe were impossible. In my opinion the most poignant part of all the season was when they stopped all music while he was dancing so the audience could see the challenge he was dealing with.
The second event occurred May 19 when 30 year old Charlie Linville, an Afghan war veteran and amputee, summited Mount Everest. As if to remind us how difficult, dangerous and demanding this still is, within a couple days of his accomplishment three climbers died while trying to summit.
The final event occurred earlier in May as the Invictus (which means unconquered) Games the place for three days in Orlando Florida. The concept of the games was the brainchild of Prince Harry of the United Kingdom. Knowing firsthand the sacrifices the men and women of the armed forces make to defend our freedom and way of life he decided to begin the games as a tribute to those who had made personal and those who have made the ultimate sacrifice. The Invictus Games featured 500 competitors from 15 nations: Afghanistan, Australia, Canada, Denmark, Estonia, France, Georgia, Germany, Iraq, Italy, Jordan, Netherlands, New Zealand, United Kingdom and the United States of America. We have reached a point where our society is so interested in happenings like these that the games were televised on ESPNU. The courage and strength of these individuals were on display for the entire world to see.
The entire United States team of athletes gather on stage during the closing ceremony at the Invictus Games, Thursday, May 12, 2016, in Kissimmee, Fla. (AP Photo/John Raoux)
It is my feelings that these and other events in our society show that The Times Are A-Changin’ and most people are becoming more receptive to those with differences regardless of how they present themselves.
Posted in Ability, Adaptive Technology, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friendship, Observation, Reality, Recreation, Sensitivity, Stuggling, Wounded Warriors
Tagged adapting, control, Courage, life lesson, lifestyle, natural environment, physically challenged, Recreation, relationship, society, using your mind