Tag Archives: relationship

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.”

Just What I Need – Another Woman In My Life

>My life has been strongly influenced by women since my birth, starting with my mother and my older sister Carole. In 1965 I married the woman who would have the greatest influence, my college sweetheart Marge Burton. For over 53 years she has always been by my side and has stood by me through thick and thin. Together we have navigated the catastrophic accident that changed both of our lives forever.

Marge and me

Marge and me paddling

During rehabilitation I was mortified to find out that someone was going to have to come to my house every day to provide for my care and get me ready for the day. I had always been a very independent and private person. Privacy, independence and pride are among the earliest casualties of quadriplegia. It is very difficult having people, even professionals, pulling back you covers and clothing in order to get a better look and provide care.

Our insurance policy only covered 90 days of in-home care. After careful thought and discussion, we decided to hire our own nurses. Rhonda has been with us now over 17 years and Charlene, who works primarily on the weekends, have both become part of our family. Their help goes far beyond those of normal nurses. They get me ready to hunt, even loading my gun, repair my wheelchair, at times fix my meals, and often help facilitate my “adventures.” So the women in my life: Marge, Rhonda, Charlene and Kelli, who fills in once in a while, as well as my sister Carole and Marge’s sister Mary, who often come and stay with me when Marge goes on vacation help give me quality of life. My life today would be incredibly different without these women. Marge, Rhonda and Charlene take excellent care of me and keep my health problems to a minimum.

Char and Rhonda partying

Char and Rhonda having a good old time

Recently, friends from college came to visit us and this new one came with them, but when they left, she stayed, and has been here ever since. I must admit she’s not much trouble and usually is pretty quite unlike the other women in my life who don’t hesitate to tell them me what they think. Truth be told, though I’m actually starting to like having her around. It’s nice to have somebody do things for you without asking a million questions. She’s more than happy to turn on the radio, play a particular song, read me a book or turn a light on and off if I ask. When I’m home alone, we often chat and I really enjoy her jokes, although they’re kind of corny.

I truly believe, like the other women in my life, things will be better with her around. How rude of me, I realize I forgot to tell you her name which is Alexa and the first light she turns on and off I named Pam to remind me of the thoughtful friend that brought her here.Alexa

Maybe I’ll Get Lucky Tonight

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

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

Our family on our 50th anniversary

He Was A Son Of A Bitch

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.
Rolling Along

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.

Welcome To Our World

Earlier this week

Earlier this week

In the blog Andyticipation I wrote Andy comes to northern New York because it is much “easier” for him to travel than it is for me. The word “EASIER” was in quotation marks because it is a relative term. At 6′ 4″ 260 pounds, it is usually a disaster when I travel, but it is far from “easy” for most individuals with disabilities to travel any distance.

Andy left here August 24th around noon to return to Utah. He flew from Watertown to Philadelphia, Philadelphia to Phoenix and then finally to Salt Lake City. When he got to Phoenix there was a weather delay, so his flight was canceled until Thursday. I’m sure if you stop and think a minute it’s fairly easy to realize the tremendous inconvenience this would be for a man with quadriplegia. The airline decided to put him up in a hotel in Phoenix. Andy got into a taxi and headed for the hotel. He told me the taxi driver was going like a bat out of hell. When arriving at the hotel the taxi driver slammed on the brakes and Andy was thrown out of his chair breaking his leg. He was pretty sure his leg was broken, but it wasn’t until Thursday afternoon he was able to get to a hospital in Salt Lake City where they put on a soft cast. The cast will stay on from 4 to 6 weeks. Imagine what it will be like to be in a manual wheelchair with one leg straight out in front of you for that length of time. How do you get close to anything? Andy, however, is approaching it with his usual determination to make the best out of a bad situation.

Welcome to our world.


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

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

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

Andy, Maia and me

Stepping Up

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

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 with Andy and me at Blue Mountain Museum

Steve and I dog sledding

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

Celebrating Steve’s retirement with my first beer in over 25 years