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
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
Within recent days I’ve received emails from several friends all struggling with the challenges presented to them by their disabilities. Of them, I am the oldest and I’m pretty sure I have been dealing with my disability the longest. I wish I could do something or make a potion that would make these challenges disappear. But, I know, as they do, that dealing with these crises is not that simple.
Andy and his grandson
Early on, after my injury, it was so important to me for people to understand that my injury was the result of an act of nature rather than a situation I had brought on myself by poor behavioral choices (i.e. Drunk driving). I didn’t want people thinking he got what he deserved. I was always grateful that my quadriplegia was the result of my pursuing an activity that I loved. Even though I was standing in waist deep water when caught by the wave I had actually been body surfing for several hours. A couple of the emails were from people who had been injured while mountain biking. Another was result of the onset of cancer and complications after a stem cell transplant. All causes were out of the individuals’ control. Why them, why me, these are questions we may never find the answers to. Personally, I feel all my pre-accident life was a preparation for my life now. It is comforting to me to think Handihelp, the blog and my public speaking may be helping others, which is all I wanted to do when I became a teacher.
What can be done, what words can be said to ease the physical and mental struggles that those of us in the disabled community deal with almost daily. It’s been my observation over the years that the best “solution” lies in the individual’s mental makeup. The single most important factor is an attitude which can be manipulated. If you look at my early blogs, most of them deal with that topic. When speaking to groups there are a number of observations that I have made over the past 17 years that I believe will be helpful in putting life and life challenges in perspective.
* Life is not fair and owes us nothing.
* Anger, over time, is detrimental to moving on.
* Life is precious; each day is a gift and one should take some personal time each day
to enjoy it.
* Life can be good again, enjoyable again, but it will never be the same. The
sooner a person realizes and accepts that, the better off they will be.
* The most powerful “tool” we have in adjusting to our situation is our mind/attitude.
* It may be difficult, but to ask for help is not a sign of weakness, and
there are many people who wish to help, but you may have to take the initial step.
* Love is an amazing thing, the more one gives, the more one has to give.
* A pet can play a major role in the life of an individual with a disability.
* Love makes everything easier.
* You can’t do it alone. Friends make our lifestyle much more bearable.
* There is a solution to most of the challenges one faces. It’s just a matter of how
much thought, time and effort you are willing to commit to finding it.
* Frustration and struggle will always be part of this new lifestyle.
* Nothing comes without sacrifice.
* Advice is easy to give, but much more difficult to take and even harder to act on.
* Laughter is essential.
* We are all stronger and more capable than we think.
* Life is full of risk.
What a comfort she was
Will this help others? I hope so, but it has helped me.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Love, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, Courage, depression, dietary considerations, life lesson, lifestyle, physically challenged, quadriplegia, using your mind
This is the title of the new book written by Gloria Vanderbilt and her son Anderson Cooper. This morning they were on Live with Kelly and Michael. I thought the book title was an amazing metaphor for life. Years ago I wrote a blog called Talks Cheap – Test Time, which was about my struggle between positive attitude and depression / suicide. At the time, my blog was being carried by a website in Australia. They refused to publish it because not only did it talk about suicide, but it also mentioned some ways I thought about doing it. They felt it was a bad idea to share this with their readers. I argued with them that it is important for others to know that they are not alone in their struggles for a meaningful life and that life is full of challenges. They still refused, so we parted company.
I believe it is difficult for most able-bodied people to understand the roller coaster of emotions many individuals with disabilities go through on a daily basis. When I am with others, regardless how bad I feel, I am always able to project the image of one who is in control and well-adjusted to my situation. But, like the rainbow that comes and goes, when I am alone, or just Marge, at times the frustrations just seem to be overwhelming. It’s difficult to reach out to others because of their lack of understanding or I don’t want to project the image of one who is struggling to cope.
Many factors prove to be a continuing struggle which is often difficult to handle. Some of the frustrations are the same that were present prior to my injury, but the coping mechanisms I used are no longer available. When I was younger and getting “hyper” my kids would say “Dad, you need a physical fix”. I could go jogging, biking, kayaking or hop in my truck and drive up into the state forest land by myself. None of those are options anymore. The spontaneity is almost completely absent from my life. Plus, there are now new factors that compound the old ones. Weather is one, health and fitness for a couple of others. Even though I was sequestered most of the winter and it’s now April I’m still housebound. Part of my frustration right now is that it’s sunny and absolutely beautiful out, but the wind chill the last few days has been in the middle teens and this pattern is supposed to continue. Add to this the almost constant nagging health issues that happens to be present most of the time or that I’m unable to get my weight under control and you end up with a situation that seems almost overwhelming. At times like this, it’s almost impossible for me to motivate myself to do anything. The thing I want to do the most is to be out in the natural environment and that’s almost impossible. People have suggested going shopping or out to eat or to the movies, but none of these are what I really want to be doing or need to do to quiet the demons.
This blog is one attempt to relieve some of my frustrations. Knowing that there are others who will read this and understand what I am saying is comforting. To know there are some who will read it and say, “Oh, I’m not the only one struggling with these issues” also makes me feel better. After all, we must remember that the rainbow comes and goes!
Posted in Ability, Attitude, Behavior, Community Inclusion, Disability, Education, Friends, Friendship, Nature, Observation, Reality, Sensitivity, Stuggling
Tagged depression, natural environment, outdoors, physically challenged, quadriplegia, using your mind