A Chair

A ChairTake 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.

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.

Andyticipation

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

“I Don’t Want To Be Me Today”

Struggling

Struggling

Those were the words I whispered to my nurse in the shower this morning. I was in the midst of a panic attack which had started shortly after I woke up. Early on after my injury I had them all the time, but now I only get one or two a month. At the earliest signs I have learned to take the medication prescribed for them. Waiting, hoping it will go away only allows it to get more developed. Once the symptoms start, it’s just a matter of time. I’ve never been diagnosed with PTSD, but I have most of the symptoms. They usually begin with my legs. There is an overpowering, all-consuming urge to move them and at times, like today, that’s combined with the fact that they feel like solid cement. There are no words to convey the overpowering attitude that takes over my mind. These attacks are characterized by facial distortions, crying and the feeling of being totally out of control. Sometimes I thrash and want to throw myself out of bed, but it is impossible because of the quadriplegia. It scares the hell out of me.

At times like this I have seriously considered smoking marijuana in an effort to totally change the way I feel. I have never smoked it before and am anxious about my mind would react to it. Craig Hospital, where I did my rehabilitation, is strongly opposed to marijuana use by those who have been paralyzed.

This morning it took almost 3 hours for my medication to take effect. The peaceful calm that I feel when it kicks in is a welcome relief to the terrible anxiety I have been feeling. Usually, after I’m up I get tired and fall asleep for a while. The struggle one goes through can only be understood by one who has been through it. It’s all consuming.
The question at this point becomes what can one do about it? The feeling, while it is going on, is like being possessed and rational thought is impossible. Well-meaning intentions of others are irrelevant. It’s been over 17 years now and I have no idea or advice for dealing with these. The only good thing about them is that they always end.

If You Can’t Laugh—How’d You Get Here?

If an individual has a disability, they will be greatly aided in their journey through life with a sense of humor. We have all heard the expression, laughter is the best medicine and I am absolutely sure that this is true. Being realistic I think developing a sense of humor may take some time after the onset of a disability. It’s my feelings, if the disability limits the person in certain ways the individual may well have to go through a grieving process.

Going to the dentist on Halloween

Going to the dentist on Halloween


In my own case my quadriplegia has rendered 75% to 80% of my body paralyzed. While the paralysis starts below my armpits my arms have also been greatly affected. They have limited range of motion, intermittent feeling at best and my hands have little to no grip.
Regardless of the cause of the disability an individual has every right to feel anger, bitterness, frustration and wonder “Why me?” Depending on the circumstances, these feelings can fall onto quite a continuum. My “accident” was the result of a condition called Shore Break which was known by the National Park Service to exist in the Virgin Islands, but was pretty much kept from the beach goers. Hawaii requires, by law, warning signs be posted on any of its beaches where this condition exists. While bitter about their choice not to warn people the situation was easier for me to accept knowing it occurred while doing something I loved. How victims deal with things like being struck by a drunk driver I’ll never know, but I do know one must move on. Accepting what has happened is the beginning, a first step.
Out to eat with my new bib

Out to eat with my new bib

In spite of an individual’s situation, what good is wallowing in self-pity going to do? After due time, one must move on. Humor can aid in that process. Even for able-bodied individuals, being able to find humor in things, being able to laugh at oneself and the situations one finds themselves in is cathartic. In no way do I mean to imply this is easy or will come naturally to most people, but “gallows humor” can really be beneficial. So my question to you is “What’s in your wallet?” Only kidding, it’s “If you can’t laugh, how’d you get here?”

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

The Times They Are A-Changin’

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

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.

Charlie Linville

Charlie Linville


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)

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.