Category Archives: The Struggle

You’re the One That I’ve been Waiting for Forever

This is a line from a song by the Stylistics called “Betcha By Golly Wow” that was a hit in 1972, but it sums up my feelings for today. What have I been waiting for forever? Well, not really forever, more like since early October 2018.

One of the symptoms of a quadriplegic is the body’s inability to control its internal temperature. An individual  is COLD almost all the time. The one daily exception is when you wake up in the morning and that ends as soon as you expose your arms. For one who is supposed to have no feelings below his arms I have all kinds of feelings below my arms and the most constant one is cold shivering. Almost always I wear a knit hat. Even in bed at night I have a hand towel draped over my head and sleep that way year round. Dressing with three or four layers of clothing on top and two on the bottom makes little difference. Mornings, when the weather is bad, I spend the first hour or so in front of the fireplace.

Sun

Today April 17, 2019 is the day I’ve been waiting for (it seems like) forever. Fifty-eight degrees, no wind and few clouds. Out I went to my usual spot next to the garage, tilted my wheelchair back and basked in the morning sun. Its heat bathed my body. My body was warm for the first time since early October. Early man had no greater appreciation for the sun than I do today. This day is so magical I have written several blogs about it before. (“Sittin’ In the Mornin’ Sun  &  Life As An Iguana”)

Unfortunately, this experience is limited. As the sun rises higher in its orbit, we reach a  point when the heat becomes dangerous to our well-being. Since there is no control of our internal temperature we can quickly become overheated leading to heat exhaustion or worse yet, heat stroke which can easily lead to Autonomic Dysreflexia which is a life-threatening emergency. Almost always we do not even know it’s happening until it is too late. The older I get the more I realize it’s the simple things in life that are the most important. So, what is the message: Carpe diem.

 

Ambivalence of Recovery

Why Try?

People with disabilities make up the largest minority group in the United States. Unfortunately, its ranks are growing every day. People who experience the onset of a disability are immediately faced with a variety of challenges. Many, I believe, go through a period of mourning or grieving, depression and sometimes even contemplate suicide. They have many questions which at first seem to have no answers or solutions. Probably the most common one is “Will my life ever be the same?” The answer in most cases, unfortunately, is no. Individuals who have suffered moderate to severe disabilities will never be able to return to life as it once was. However, after a period of mourning and sad 2rehabilitation they must begin to develop and adjust to a new lifestyle. In the beginning many people often try to solve the challenges they now face with the same techniques they did prior to their disability. Most of the time because of changes brought on by the disability the “old ways” don’t work anymore. To continue this type of approach can lead easily to frustration in the short run, discouragement and failure in the long run. Some individuals seem willing to accept failure as the ultimate outcome. Over time this acceptance can become a way of life. Believing, if I tried to do this and can’t do it, why should I try something else because I won’t be able to do that either. After a while I believe this can become, what I like to call, learned helplessness and the individual retreats to a highly sedentary lifestyle. The disability is now dictating how they live.

Why Not?

The onset of a disability often results in the loss of some part of the body’s “normal” function. Over time and therapy an individual could see the almost complete return of function, partial return or little or no return. Far more important than the loss of normal body function is the loss of the skill that the function facilitated. So, it is the skill that must be replaced, and make no mistake, most skills are replaceable. The important point here is skills are almost always replaceable. From a cultural point of view, there are normally several accepted ways to perform a certain task, to the exclusion of many others. If the disability prevents an individual from performing a task, a new skill for completing that task must be found. This can be accomplished by adapting equipment and/or finding a totally new way of doing it. One of the important characteristic critical to moving on is attitude, especially the attitude toward failure. Most people don’t realize that one’s attitude about failure is learned. Bsaby ealA young baby trying to turn over, crawl or learning to walk has no concept of failure, imagine if a baby tired of failing all the time accepted failure and stopped trying. They would never learn to roll over, crawl or walk. Accepting failure as part of a bigger process enables the individual to learn and continue moving forward. If attitude toward failure is learned, it can be unlearned or at the very least modified. In reality, there are many alternative ways to solve a particular challenge. Progress may be slow at first, but over time they become enabled and take control of their future called learned empowerment.

Empowerment

Empowerment

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.