Category Archives: The Struggle

Putting Risk in Perspective

Many of us fool ourselves into believing we have some special persona, especially men, that we are some type of rugged, resourceful, independent character in complete control of our lives i.e. Daniel Boone or Davy Crockett.

For most individuals with a disability this concept hits even closer to home. In rehabilitation people struggle to regain some semblance of independence and control over their new situation. It’s not easy, but with great effort and persistence the idea develops and after years we fool ourselves into believing it.

Andy's dog Marz

Andy’s dog Marz

Last week my friend Andy, from Utah, who was kind enough to share his story with us, took his dog Marz for a “walk” as he often does in the winter. The “walk” consists of him dropping his dog off on a road that’s not used much and then drives on and Marz trots after the truck till it stops and then hops back in. Everything went according to plan. After Andy had driven a while he stopped, and the dog jumped in.   I’ll let Andy take it from here:

The dog had a good walk and I was backing up to an area where I could get turned around. There is plenty of snow up here and I got one back tire off the road and got stuck. If I could have gotten out of my pick-up and shoveled, I could have gotten out in 5 minutes. Not so and unfortunately, I was just out of cell phone range. That was around 4:30 pm Tuesday. I figured somebody would eventually come, it took a while though. I had less than a half of a tank of gas and felt I should ration it as much as possible. It got dark and the coldest I saw it get was 8⁰. It is really kind of amazing how warm you can keep a pick-up with you and a shaggy dog inside. Marz was concerned, she knew something was up, and after her initial romp outside, she would not leave the pick-up. She is also trained not to get into the front seat and there was no way to cuddle with her. So, Tuesday night I slide over to the passenger seat because it has a heater. I kind of made it through the night unscathed. I listened to 8 hours of a book on tape. The stars were great!

Andy in his truck

Andy in his truck

My problem was catheters. I did not bring my cathing stuff and by about 10 pm things were already getting uncomfortable. I was pretty clammy the results of dysreflexia but dealt with it. I think the dysreflexia was good and bad. It kept my heart rate up helping me stay warm, but was not very comfortable. I did have one lubricated, self- contained catheter. Unfortunately, it had been in my truck a long time and was not very lubricated anymore. I struggled for about an hour in the dark trying to get that thing in with no success. Without my tools and fingers that don’t work very well it is hard. So, by morning I had leaked all over. I cannot begin to tell you how much I hate the smell of pee. It is really stinky when you sit in it for hours.

The sun comes up and brings optimism and much needed heat. I was not in the direct sun and my pickup read 16⁰ at 1 pm and 30⁰ at 5 pm. Yes, I sat there the whole day on Wednesday, and nobody came by. I am not for sure if it was a mistake or a good thing, but I snagged that old catheter and slowly was able to work it in. Lots of spit and I rubbed it with the urine from my underwear. How is that for being resourceful. It still was very stubborn. I can’t imagine what I did to my urethra by doing that. And of course, it definitely was not a sterile procedure. I did drain about my max of 500 ml’s. I had nothing to drink either or pills, but I think I resolved my full bladder issue.

I confess I was a little depressed when, after a whole day nobody came by and I knew I had to make it another night. It is amazing how fast a Urinary Track Infection (UTI) kicks in by introducing germs that way. By 8 pm I was shaking terribly, had terrible cold sweats and knew my butt was not happy anymore. 24 hours in a pickup seat sitting in your own urine is not good for the butt. I knew I was in for a long bad night.

Fortunately, my friends, that call me all the time got worried when I had no cell signal. At 10 pm they called the sheriff. The sheriff was able to ping my last phone signal. Search and rescue found me pretty quick. I told them to just take me to the hospital. My body temp was 90⁰ at first and my blood pressure was pretty high. I told the ER nurse going in I was pretty rank. I had peed all over myself. They warmed me up, cleaned me up, gave me an antibiotic, patched my butt (it was not too bad), and sent me on my way. …

There can be this huge helpless feeling at times being in a wheelchair to the point of breaking you down. I hate having my disability dictate how I run my life. All my friends said just send them a text and let them know where I am going and let them know I made it. I choose to live my life the way I do… I do numerous things that could get me in trouble which the able- bodied person can’t even begin to understand. I don’t want to text somebody every time I push the limits a little. But I definitely do not want to die freezing to death. At least not anytime soon, it was hard. If I am freezing to death, I don’t want to have a fever at the same time or a pressure sore forming on my butt. Really made it complicated. I don’t think I would have had another night in me, but I never lost hope somebody would show up. Makes me feel lucky I have people that love and care for me.

So, do you think that warrants cheating death. Maybe not quit there but getting close. If my truck would have quit working it would have been slow and more painful, probably death. So, what do you think; am I a guy that you may think is just too crazy or stupid? I think one goes hand in hand with the other. My motto is we are here to live life, not watch it go by. Being in a wheelchair brings that to a whole new level. I do think there are ways to mitigate risk. Trying to explain that to an able body person is really hard. Fear can paralyze you, but gives us the opportunity to excel. I definitely think very few people want to live with the risks I do. I understand that and that is okay. I don’t want to live a sedentary lifestyle.”

Risk exists for all of us. For an individual confined to a wheelchair who is determined to be active risks can catapulted one back to the reality of how helpless and dependent we really are. For many risk worth taking because as the Poem says: “Only a person who risks is free.”

Andy’s survival is a testimony to his resourcefulness, but as he says “risk can be mitigated.” There are several companies which, for a nominal fee, will provide a pendant which can be worn and when activated can locate your position anywhere in the United States and send help. A small Survival Kit can be put together and carried on a wheelchair or in a glove box of a vehicle. The lesson here is to prepare yourself ahead of time not, not to risk.

Andy Kayaking Thanksgiving Day 2018

Andy Kayaking Thanksgiving Day 2018

Over The Edge – Literally

Being lifted into place

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

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.

SEARCHING FOR SIMPLICITY

It was already a little after 10 AM when I rolled out on our deck. I follow a similar ritual almost every morning. It begins by my trying to warm my body. Direct sunlight in good weather and the fireplace in winter. Next is my intake of caffeine, a bottle of diet Mountain Dew and a cup of coffee to get my body working for the day. It is also a time when I muse about what is going on in my life, the world, our country or whatever. It was immediately obvious that this was going to be the nicest day of 2018 so far. Bright sunshine, no wind and the temperature that was predicted to climb to around 80. My eyes wandered to the nesting boxes not far from the deck and I noticed a swallow sitting on one of them. In the next instant another one came darting out of one of the box and landed in the flat area around my garden boxes which was closer to me. Watching I realized it was the female and she was gathering material to build her nest. She’d pick up some dead grass or weed, fly back to the box and repeat the process over and over again. While she was doing this the male sat on a nearby box seemingly aloof to the whole process. Typical my wife would say. Occasionally, she would fly up and perch next to him seemingly to confirm their relationship, then they would take off into the air darting to and fro seeming to celebrate their existence.

Male Swallow

Male Swallow

I began wondering what it would be like to live a life that was that simple. Fly north in the spring, build a nest, raise your young, raise a second batch if there were time, then fly south as the cold weather returned. Swallows must’ve been doing this for thousands of years with little deviation.

At 75 you would think that one’s life would be getting simpler. However, the exact opposite seems to be true for me. It’s not like my thoughts are complicated by the fact that I’m in the twilight years of my life because death does not weigh on my mind. I have no idea what will happen to me when I die, but the one thing I know is that I’ll be out of this damn wheelchair. Living seems to be complicated by many factors for me. The thousands of daily frustrations that come along with spinal cord injury. They don’t seem to be getting better. My desire to enjoy as many of the activities that provide me quality of life. The ebb and flow of relationships in my life seems to be a constant strain lately. Sitting on the deck in the warm sun I’m jealous of the swallows for their seemingly simplistic existence and their love of life.

Fly By

Fly By

Life As An Iguana

If you’ve been watching the news during the recent invasion of arctic air deep into the United States, you’ve probably seen or heard of iguanas in Florida falling out of the trees seemingly frozen to death. However, wildlife experts cautioned against making the mistaken assumption that these animals are dead. While there seems to be no respiration or heartbeat they are alive and if the weather warms up in a few days they will come back to life and resume their normal activities. What is causing this phenomenon is a condition known as poikilothermic. Poikilotherm is a characteristic among most reptiles in which their body temperature is determined by their environment rather than by their body’s ability to produce heat. They are cold blooded. When the iguana’s temperature drops below 30 degrees they can no longer carry on normal activities including holding on to a branch. We, on the other hand, are members of a group of animals who are known as homeotherms (warm blooded) meaning our body temperature is controlled by the body itself regardless of the environment we happen to be in. Being able to regulate body temperature is a major reason humans are found all over the world regardless of climate type.

Frozen Iguana in Florida

Frozen Iguana in Florida

Iguana fallen out of tree

Iguana fallen out of tree

Quadriplegia brings many changes to the body most of which able-bodied people are totally unaware of. One of the most serious is that our body loses the ability to control its temperature. This can lead to an extremely serious condition known as Autonomic Dysreflexia which can be life-threatening very quickly. The body of someone who has become severely paralyzed loses the ability to sweat or shiver. Each of these body functions is critical in helping to regulate body temperature. For a person with quadriplegia on a warm day their body cannot prevent its temperature from rising. Worse than that is the individual has no idea that his temperature is reaching a critical point. This threat forces many of us to spend much of a beautiful sunny day indoors. A cold environment causes a lowering of body temperature which is just as serious. Unfortunately, the temperatures do not even have to be extreme for these conditions to occur.

Another effect of this phenomena is that a person with quadriplegia is almost always cold. Even on relatively warm days unless they are in direct sunlight their bodies give them the sense of being cold. Probably 360 days a year I can be found with a knit hat on my head and at night when I go to sleep, I always have a small hand towel draped over my head. It’s hard to understand how a body which is supposed to have little actual feeling can have the sense of so much phantom feeling and pain.

Soaking Up The Sun

Soaking Up The Sun

Normally when iguanas wake up in the morning they make their way to a spot that has direct sunlight and remain there until their body temperature rises high enough for them to pursue their effort to secure food. Just like iguanas when I first get up on a warm day I go out and sit in the sun and rejoice as my body warms up. While you will not find quadriplegics dropping out of the trees on a cold day you can bet they are always struggling to stay warm.

Life As An Iguana

Life As An Iguana

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.

Through No Fault of Our Own

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

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

What a comfort she was

Will this help others? I hope so, but it has helped me.