Tag Archives: relationship

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.



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

Don’t Give Up…. Don’t Ever Give Up

The other night, Wednesday 28, I turned on the television expecting to find a pre-game show for the basketball game between Syracuse and Ohio State. I enjoy watching Syracuse basketball and lacrosse and rarely miss a game. However, rather than the pre-game show ESPN was playing a tape of Jimmy Valvano’s acceptance speech for the inaugural ESPY Award. ESPY stands for Excellence in Sports Performance Yearly Award and it recognizes individual and team athletic achievement and other sports-related performance during a calendar year. The ESPY is also called the Arthur Ashe Courage and Humanitarian Award. Jimmy Valvano, for those of you who don’t know, was a young, flamboyant college basketball coach from the late 1960s through 1990. The high point of his career was when his team the North Carolina State Wolfpack defeated the heavily favored University of Houston Cougars in the NCAA Championship Game in 1983. I was inspired and brought to tears again and decided to edit and republish an old blog I had written December 4, 2013.

The end of that 1983 NCAA Championship Basketball Game has also been called one of the most exciting finishes in a college basketball game ever. NC State was a huge underdog and most experts believed had little chance of winning. With less than 30 seconds left and the score tied NC State had the ball and were desperately trying for one last shot. With just a few seconds left a player shot the ball 30 feet from the basket and it was obviously going to fall short. As the ball approached the basket with just a second or two left on the clock Lorenzo Charles, one of NC State’s forwards, jumped up caught the ball in midair and slammed it home for the winning basket. The final score was NC State 54 Houston 52. What ensued has become a classic in NCAA championship lore. Jim Valvano ran out on the court, among the celebrating players, running from one spot to another waving his arms as he later said, “looking for someone to hug.”

In 1992 less than 10 years later, Valvano was diagnosed with terminal cancer. As a result of his courage and positive attitude he was chosen as the first ESPY Award recipient On March 3, 1993, shortly before his death, he gave his now famous acceptance speech. It was also at this time he and ESPN created The Jimmy V Foundation for Cancer Research, an organization dedicated to finding a cure for cancer. Jim Valvano died a little over a month later at the age of 47.

One must wonder, as I’m sure many of us do, if he ever thought life was unfair. In 1995 a 20-year-old Boston University freshman went out on the ice for his first shift as a varsity hockey player. Eleven seconds later he was a quadriplegic. Travis Roy has said “There are times in our lives when we choose our challenges and other times when challenges simply choose us.  It is what we do in the face of those challenges that defines who we are, and more importantly, who we can and will become.”

How did Jim Valvano accept his challenge? How does each of us except ours? Below is a link to the YouTube video where you can watch Jim Valvano’s ESPY speech and if you have never heard it, I encourage you to listen. Oh, by the way Jim Valvano announced at the banquet the Foundation’s motto would be “Don’t Give Up…. Don’t Ever Give Up.”

Since its inception the Jimmy V Foundation, as of August 2017, has donated more than $170 million to cancer research. 100% of the donations goes to cancer research. You can donate at Jimmy Valvano Foundation .

The Struggle Within the Struggle

Most people have no idea what it is like to live with a disability. Every day is a struggle in itself. Some individuals are aware of the obvious challenges, most are unaware of the less obvious majority. I recently read that John McCain, whose range of motion had been severely limited by the torture he received while a prisoner of war in Vietnam, had to have another person comb his hair because he could not lift his arms above his shoulders.

Senator Tammy Duckworth

Senator Tammy Duckworth

Many disabilities are visible at first glance. If the individual, when in public, presents well, seems to be in “control” and well-adjusted to their situation people often think to themselves, that’s wonderful or will say “Wow, I could never do that!” Neither could be further from the truth. First, anyone has all the abilities they need to deal with a severe crisis, already in each one of us. When talking to students I will often ask if people like Gabby Giffords, Tammy Duckworth, Jaycee Dugard or John McCain, individuals who not only survived horrendous challenges in their lives, but they went on to become examples of strength and fortitude to others received something special at birth that nobody else got. If the answer is no, which of course it is, then that same strength and courage is in each of us.

Returning to the person with the disability who presents so well in public, it is easy to understand why people come to believe that’s what their day to day life is like. For most, like quadriplegics, nothing could be further the truth.   Every day involves a varying degree of challenges. There is always frustration, anxiety and at times depression. Lack of strength and range of motion issues is a constant problem for many.  Pain, of varying intensity, including phantom pain in areas that have been amputated or paralyzed is not uncommon. Individuals with high spinal cord injuries (SCI) bodies are unable to control their body temperature, have trouble regulating their blood pressure and are usually constantly cold regardless of environmental temperature. There is a myriad of other issues both mental and physical which present from time to time. This is our “normal”. However, one should remember, no matter how bad things are many can pull themselves together when in public which just helps perpetuate the myth.  But, for the individual there is always something to deal with.

Open Letter to A Good Friend

Steve & me at Payne LakeMaybe by explaining it to you I can come to understand it better myself. I have a lot of sadness. How it presents in my mind is influenced by many factors. I’m not sure, but it seems to be becoming more prevalent either with growing older or as my years as a quadriplegic increase or both. I find myself longing for some of the abilities of my former life, like independence, freedom, spontaneity and self-reliance. Truly, if I have any part of these they are mere shadows of what they used to be. Oh, I forgot the most important one is control. That’s the issue! What control do I have in my life? Really?

Mental control, I feel, I have more of and most of the time it allows me to keep the other at a distance. Physical control, however, of my overall environment is really lacking. What I can do by myself is limited. Within a mile of my house in either direction are steep hills which once down I could not get back up. To leave, in the van, means someone must be driving me. My four-wheel drive chair, even in my local environment, also has limited physical boundaries. Most of the activities away from home require a supporting cast while activities in the home also require occasional assistance now and then.

At times, when these limiting factors seem to become overwhelming and I feel things are out of control I tend to become passive aggressive a condition I often had to deal with with my special education students Defined on Google as: of or denoting a type of behavior or personality characterized by indirect resistance to the demands of others and an avoidance of direct confrontation, as in procrastinating, pouting, or misplacing important materials.

Commonly, I will respond negatively taking action over the things I do have control of, even though at the time I know the action is not in my best interest. Most often it involves cancelling doctor appointments, my participation in activities or events I have been preparing for and really want to be a part of or just refusing to do what I should do. I feel better briefly and then wonder what the hell did I do that for and my only thought is “Because I can.”

Just What I Need – Another Woman In My Life

>My life has been strongly influenced by women since my birth, starting with my mother and my older sister Carole. In 1965 I married the woman who would have the greatest influence, my college sweetheart Marge Burton. For over 53 years she has always been by my side and has stood by me through thick and thin. Together we have navigated the catastrophic accident that changed both of our lives forever.

Marge and me

Marge and me paddling

During rehabilitation I was mortified to find out that someone was going to have to come to my house every day to provide for my care and get me ready for the day. I had always been a very independent and private person. Privacy, independence and pride are among the earliest casualties of quadriplegia. It is very difficult having people, even professionals, pulling back you covers and clothing in order to get a better look and provide care.

Our insurance policy only covered 90 days of in-home care. After careful thought and discussion, we decided to hire our own nurses. Rhonda has been with us now over 17 years and Charlene, who works primarily on the weekends, have both become part of our family. Their help goes far beyond those of normal nurses. They get me ready to hunt, even loading my gun, repair my wheelchair, at times fix my meals, and often help facilitate my “adventures.” So the women in my life: Marge, Rhonda, Charlene and Kelli, who fills in once in a while, as well as my sister Carole and Marge’s sister Mary, who often come and stay with me when Marge goes on vacation help give me quality of life. My life today would be incredibly different without these women. Marge, Rhonda and Charlene take excellent care of me and keep my health problems to a minimum.

Char and Rhonda partying

Char and Rhonda having a good old time

Recently, friends from college came to visit us and this new one came with them, but when they left, she stayed, and has been here ever since. I must admit she’s not much trouble and usually is pretty quite unlike the other women in my life who don’t hesitate to tell them me what they think. Truth be told, though I’m actually starting to like having her around. It’s nice to have somebody do things for you without asking a million questions. She’s more than happy to turn on the radio, play a particular song, read me a book or turn a light on and off if I ask. When I’m home alone, we often chat and I really enjoy her jokes, although they’re kind of corny.

I truly believe, like the other women in my life, things will be better with her around. How rude of me, I realize I forgot to tell you her name which is Alexa and the first light she turns on and off I named Pam to remind me of the thoughtful friend that brought her here.Alexa

Maybe I’ll Get Lucky Tonight

The phone was ringing. Shortly after my wife answered it, not only did I know it was our son, but I knew why he was calling. After a couple minutes she shouted to me “Mark wants to talk to you.” As I turned on the speaker my son said “Happy Anniversary.” I couldn’t believe it! We’ve been married 52 years. As our conversation came to a close, I told Mark that we’re going out to dinner at an extremely nice restaurant not far from here. Always looking to make a joke I said who knows “maybe I’ll get lucky tonight.” There was no chance of me getting lucky in the way this quote is usually used. Abstinence, while a choice for some, was just another behavior forced on us by my quadriplegia.

Wedding Day 1965

Wedding Day 1965

It is not unusual when I take questions and answers from a group I’d just spoken to for someone to ask me what do I miss the most. I always answer intimacy. Not sexual intercourse, which it 74 would probably not be a major activity anyway, but rather the subtle displays of affection that take place during a normal day. The warmth and security of a hug, a touch as my wife passes by or most of all snuggling in bed. All of these little shows of affection are extremely difficult for someone who was paralyzed and confined to a wheelchair. Once I’m placed in bed, I can only move my arms and my head. Being unable to roll on my side makes snuggling next to impossible. A hug with a person in a wheelchair is awkward at best. The physical presence of the chair combined with the fact that my wife has to bend way over makes contact difficult and as a result usually brief. At night or in the morning while I am still in bed, I will notice my wife walked by and touch my foot or leg. If I wasn’t looking I would never know that it had taken place.

In reality being a quadriplegic takes a lot of common everyday occurrences away from you. However, there are some things that you become more conscious of as a result of your disability. One of the first things that would be mentioned is the observation that the majority of people in our society are good, caring and loving individuals who want to do the right thing. Unfortunately, most programs on television or the Internet tend to focus on the small percentage of individuals who do not fall into this majority.

To get back to the original statement I made to my son little did I know that it was foreshadowing for the dinner ahead. Our waitress at the restaurant also works in my doctor’s office so she knew who we were. In the course of the dinner we mentioned to her that it was our 52nd wedding anniversary. When she bought our dessert there were a couple candles in it and we laughed as we blew them out. When it came time to pay she informed us that someone, who wished to remain anonymous, had already paid for our dinner. While the restaurant was pretty crowded we did not recognize anyone we knew. For some reason someone had reached out and touched us. People should know the strength and ability to persevere, we draw from such acts of kindness. The reaching out of people like this helps give us the strength we need to move through the struggles that we face in our daily lives. Thanks to all of you who reach out to all of us. Oh, and by the way I did get lucky that night.

Our family on our 50th anniversary

Our family on our 50th anniversary