Standing Up & Standing Out

A group of curious by-standers were gathering to see what was going to happen. Most were on vacation to escape the stress and pressures of their busy lives they had left behind for a week or so. An individual stepped from the group and walked over to the limp body laying on the beach. As he began to help two others came over. The “Good Samaritan” was a doctor named Henry from Massachusetts who was on vacation with his wife and family. There were other doctors and qualified individuals in the crowd who chose to do nothing but watch.

Henry got the body turned so the head was downhill and blood would flow back to the heart. Knowing the likelihood of a broken neck he applied manual traction to the head and neck hoping to prevent further damage. He kept the neck from moving for over 20 minutes until an emergency squad arrived. Once on the backboard the man was driven to a small town, loaded on a Coast Guard boat, and taken to a hospital on a larger island.

Cinnamon Bay St. John Island U.S. Virgin Islands

As you have probably guessed the victim was me. The date was February 17, 1999, 22 years ago. Four vertebrae in my neck were broken, but because of Henry not only am I alive but the damage to my neck was confined to C6 the best possible outcome for me. The other breaks were higher and would have resulted in a much greater degree of paralyzation.

Henry and I have become friends. We met years ago and continue to stay in touch. What do you say to a man who has given you the greatest gift of all: LIFE? I have tried to live my life following Henry’s example: Step up and step in unselfishly to help others when I can. I hope if you ever need help there is a Henry in the crowd.

Stranded in the Doldrums

During the age of sailing ships at times a ship would run into places in the ocean where there was no wind blowing. These areas were known as the doldrums. For all intent and purposes the ship was unable to move. They would try to move by sending sailors out in a rowboat and have them tow the ship or they would take the anchor, at least in the movies, out as far from the ship as they could, drop it and then wind up the anchor chain to move the ship in that direction. However, it’s my understanding that neither of these techniques worked very well. Without the wind the only movement, they had was the ocean current which many times took them away from where they actually wanted to go. Ships could easily be stranded for days or even several weeks. At times, their situation became dire.

I find myself in the doldrums right now. It’s not a lack of wind that’s holding me in place, but more like an attitude brought on by a variety of factors. The weather has been a factor since we have had little snow, higher than average temperatures and rain. Part of the problem has also been my inability to deal with the constant discomfort in my body. Despite wearing more layers of clothing than the average Eskimo my body is chilled by the pain emanating from within. The political situation in Washington is another cause and that’s all I’m going to say about that. I myself have been very complacent, pretty much staying at home (indoors) except for an occasional dinner out or a trip to the local movie theater. It seems like the more complacent you are, the easier it is to become even more complacent.

SU scrimmaged Yale today Feb.2, 2020

There is a slight breeze though beginning in my doldrums. I’m hoping it becomes stronger and gets me moving again. In part, it’s the beginning of Syracuse Lacrosse. They are ranked 5^th in the nation preseason. Punxsutawney Phil has indicated we’re due for an early spring, which will allow me to get out into the environment I love. I am also encouraged by the fact that I have an appointment with the doctor who may be able to prescribe medical marijuana for my situation.

So, let’s all hope there is a warm summer breeze heading towards Northern New York that will get this ship moving and out of the doldrums.

What Do An Iguana and Quadriplegic Have In Common?

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.

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.

Warming Up

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.

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 or if it’s cold in front of the fireplace. 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. (REPOST)

 

Getting Out of Bed

Getting Out Of Bed

Morning Run

Years ago, I would get out of bed in the morning, put on a T-shirt and a pair shorts, do some exercises on the lawn and then start off on my daily run. Normally it would be about 6:30 in the morning, but sometimes if I was going further it might be 5 or 5:30. At least once a week I would run to the school where I taught, which was about 12 miles away. The day before I would’ve left a change of clothes in my locker so when I got there I could shower and dress for the day. The run to school was beautiful. It was a rural landscape of rolling hills, beautiful scenery and back roads some of which were still dirt. It was unusual if I saw anyone else.

Those days have been gone for quite a while now. Now getting out of bed has become a process that usually takes between 2 or 3 hours. It’s varies very little from day to day. Alexa, the lady in the can, wakes me up at 7 every morning. Because of health-related issues I have breakfast in bed right away and then brush my teeth. After that a suppository inserted into my rectum. After the nurse arrives my bowel program begins. The length of time of the program is influenced by a variety of factors. Next, I’m lifted into a shower chair and wheeled into our large “party-shower” to clean up. After the shower, it’s back into bed to get dressed. Another process which varies greatly i.e. Summer vs. Winter. After I’m dressed, an activity in which the nurse does almost all the work, I’m lifted-up again and placed in my wheelchair for the day.

Bosco and me ready for the day?

Even after 20 years the ritual still bothers me. I close my eyes and try to disassociate myself during the bowel program. After that I interact with the nurses who have become members of our family. But even after all these years I find myself wishing I could just get up and get out of bed. Able-bodied people have no idea how fortunate they really are. Well, I know how lucky I am and how much worse my situation could be. Even so, I still find myself longing for the days when I could just jump out of bed and get going.

Time vs. Accomplishment

“Just a minute,” “I’ll be ready in a second” and “Hurry up!” Without a doubt we are a time-oriented culture. Time is a factor used to measure most occurrences in our society. The majority of our athletic contest all have a time factor controlling them. Speed is often considered an asset. People are usually more than willing to tell you how quickly they accomplished a given task like a Rubix’s Cube or Cup Stacking.

With the onset of a major disability time can go from an asset to a foe. It’s very easy to let time continue to be a major factor in our lives and in the process can often lead to frustration. One of the drawbacks of a lot of adaptive equipment is that they do not function as quickly or consistently as one may wish. An individual with a disability would benefit greatly if they can change their outlook toward time. My friend Andy likes to say: “We’re going to be in the wheelchair all day anyway, so we might as well make the best of it.”

A couple weeks ago I was over in the area where I hunt making some adjustments to my blinds and trimming bushes. After I got home, I realized that I had lost the Mountain Dew bottle I always take with me, but had no idea where, it was since I had covered a lot of territory. It bothered me because try not to litter and I didn’t want the owner to find it and think that I was doing just that. Yesterday was the first opportunity I had to go hunting this season. I went into a blind from which I have had a lot of luck, but did not see any turkeys after sitting there for hours. I did, however, happened to notice the lost bottle sitting next to some bushes I had trimmed. I decided to pick it up before I left. I carry a number of tools with me on my wheelchair. There is one I call the Rope and Hook which, among its uses is picking up bottles. Normally when I pick up a bottle it is full and the weight makes the whole process a lot easier. Picking up an empty bottle proved much more difficult. After trying to slip the “S” hook around the bottle’s neck for over 20 minutes I started getting frustrated. Every time the rope hit the empty bottle it rolled in the grass. While re-positioning my wheelchair, I thought to myself what the hell difference does it make how long it takes me to pick up this bottle as long as I pick it up. Even though I’ve been a quadriplegic over 20 years, this was still like a revelation to me. In the long run what’s more important, accomplishing something quickly or just succeeding in what you are trying to do?

 

Why I Love the Outdoors!

Memorial Day this year was sunny and probably around 55°. It was a quarter after nine and I was heading to one of my blinds to turkey hunt. I drove across one field, down an abandoned road to get to the blind that had been built for me years ago by my young friend Daniel. I never go there that I don’t think of it as kind of a memorial to him. Daniel was the victim of constant bullying, but I’ll never forget him.

Blind and tree

I got behind the blind and all situated to see what the morning was going to have to offer. Not having to wait very long, two deer scampered across the field from one side to the other. Probably an hour later I noticed a gobbler walking in the field probably 60 or 70 yards from where I was. As any turkey hunter knows that is way too far for a shot. Calling softly to the turkey seemed to make no difference at all. The tall grass covered everything but his head. I knew from the color it was a male. All of a sudden, he stopped in his tracks and seem to go into full alert mode. As I surveyed the field, I could see no reason for his aroused behavior. Then he immediately dropped down into the grass and I was unable to see him at all. After watching his head periscope up two or three times it went down, and I didn’t see him for 15 or 20 minutes although I kept watching. Suddenly, to my amazement beautiful dark red coyote sprang out of the grass in an effort to catch the tom.

Two deer from the blind

The turkey sprang into the air and flew into a huge tree right in front of me. The coyote ran back and forth as if trying to figure out what to do now. He quickly lunged in another direction and a second gobbler, which I had never seen, sprung into the air and flew into the same tree. After spending about 15 minutes trying to figure out what had gone wrong the coyote finally trotted away.

Reflecting on what happened, I realized that the coyote must have crawled through the grass to reach the point where he jumped up trying to catch the turkey. From where I was, I had a complete view of the field and would’ve seen the coyote if he was at all visible. The turkeys remained in the tree for almost an hour. Finally, one flew off in the opposite direction. About 15 minutes later the other one flew out landing about 30 yards to my left. I had a good shot so took the opportunity to harvest the bird.

Coyote from my Trail Cam

Since I was injured over 20 years ago, I appreciate the uniqueness of everyday and absorb what life has to offer. To the turkey I’m just another predator. He does not care I’m in a wheelchair or that I fire my weapon with my mouth. I like matching my skills against theirs. Today, however, was still a very special experience.

End of a special morning

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.

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 rehabilitation 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. A 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

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

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

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

Starting Over

The Assistant Director of Therapeutic Recreation at a nursing home several hours from my home sent me an email a couple weeks ago. She wrote “I recently started a support group for some of our residents who are struggling to cope with depression and loss of independence related to having had strokes. At our last meeting, the conversation turned to mobility and adaptations. One resident was feeling hopeless about his lack of ability to do things he used to do. They were interested to learn more! I am reaching out to see if you would be interested in setting up a video conference to guest speak at one of our meetings and offer advice, encouragement, answer questions, etc.”

Video Conference

We had the meeting earlier this week and it was one of the most positive activities I’ve participated in in a long time. I showed a short video which talked about what had happened to me and the things I had learned over the last 20 years that help me cope today. After the video there was time for questions and answers which I personally found highly rewarding. There was a closeness that was brought about by being able to address questions face-to-face as the laptop in the nursing home was moved to each individual when they asked the question. As I interacted with these individuals, I began to realize that they were still in the early stages of the onset of their disabilities. So, I decided to share with them some of the struggles I had early on, and at times still have, adjusting to the new situation I found myself in. Two questions plagued me early on. The first was would I still be a positive contributor to society, or would I just occupy time until I passed away. The second and much more important question was would I ever be able to return to the activities that gave me quality of life. Years later, I realized the answer to both of those questions resided in me. What happened to me in this new life would be the result of how I chose to deal with the situation. I often refer to that choice as choosing Helplessness or Empowerment.

I am not a specialist, authority, or counselor on the topic of disability, but having been there, I feel confident in talking about what I believe is a “normal” process that many people go through with the onset of their disability. I felt very strongly that I should share some of the painful experiences I went through early on during rehabilitation. Life seemed hopeless, depressing with no promise of a solution. For a while I seriously considered Suicide and took a plan to the precipice before I realized how totally selfish that was. People need time to grieve. They have lost the function of a part of their body. Chances are good their life will never be the same. That idea can lead to panic and insecurity as to what the future holds. Individuals need to understand that these feelings are normal, and they have every right in the world to feel depressed and hopeless in the beginning.

However, the grieving process must be passed through and life must begin again. It is possible for many to regain the skills necessary to participate in activities they enjoy and provide them quality of life. This recovery, like so much of their new life, is part of a process. It doesn’t take place in days or in months, but it will take place with the proper attitude over time.

Empowerment

If an individual wants to be strong physically there are all types of programs and exercises, they can do to increase their physical abilities. Likewise, if a person wants to be strong mentally, they must work on that to build up their mental strength. The process involves steps like accepting what has happened, concentrating on abilities, not disabilities, commitment to move on, getting rid of anger and resentment. Realizing things will never be the same, but a new life can be meaningful and rewarding. Activities which can help encourage these realizations included meditating, Imaging, counseling and support groups. All these changes, in turn, can help lead to individual empowerment.