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
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
Posted in Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Humor, Love, Observation, Reality, Sensitivity, Stuggling
Tagged 50th wedding anniversary, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, relationship, society
Take 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.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, society
A vast majority of animal-rights activists, anti-hunters and others who have never hunted probably believe that most hunters just want to kill an animal. A better term to use instead of kill would be harvest. Harvest is a term usually used to refer to crops. Species, like crops, because of man altering the natural environment, must also be managed to ensure their growth and survival. One very common misconception is that nature is benevolent and always provides what is best for the animals. Nature, like so many other things in the natural world, is comprised of yin and yang and can be unbelievably cruel and heartless. It is really wrong to give Nature human characteristics. It’s really just a force of the natural world. Prior to my accident, I snowshoed into several deer yards and saw a fair number of deer, mostly fawns and yearlings, which had died a painful and cruel death from starvation. What’s best for the game population is now determined by a state’s Environmental Conservation Department and many factors influence the rules and regulations. However, I don’t believe most hunters hunt just to harvest game.
After struggling for 11 years trying to compensate for all the challenges placed on me by quadriplegia and hunting from a wheelchair, I was finally able to harvest a turkey. Since then I have been fortunate enough to harvest 4 more turkeys in the last 5 years. This Spring I have hunted more than I ever have since my accident. The hunting season ended Sunday on a rainy day. I last got out Saturday and didn’t see a turkey, but did have a hummingbird come to the honeysuckle I was sitting in and was about a foot from my face. That was pretty cool, but I would have rather seen a turkey. As a matter of fact, I did not see a turkey the entire month of May.
What I would like to do is explain some of the reasons why so many hunt. The challenge of matching your skills and abilities against a wild animal is stimulating, exciting, frustrating and rewarding. To the turkeys I’m just another predator; it is irrelevant I’m in a wheelchair or that I use my mouth to fire my gun. The most mail I receive on Handihelp are from individuals recently disabled asking questions about affordable adaptions available which will help enable them to return to hunting and fishing that is such an important part of who they are. One email writer, Randy, summed it up better than I ever could:
“Before the accident, I spent a lot of time in the outdoors; camping, fishing, hunting. It’s where my heart lived. I never felt more alive than when I was out there and testing myself. I know you understand. It wasn’t just being out there. It was being out there the way I wanted to be out there — with me doing the work. Testing my skills and knowledge both with and against nature. I know you understand that part as well. Losing that part of me in the accident felt like losing a quintessential part of who I was. I tried going back into the woods, but it didn’t feel the
same. I couldn’t recapture that ‘feeling.'”
Many feel a connection with nature during the time spend hunting and fishing. Often, as you can see below, nature chooses to share some special moments with those who are spending so much time in the out of doors. The enjoyment I get sitting in a blind is many fold. There is an intensity in my mind that prohibits thoughts of the stressors common in everyday life. Any second I feel the game will come into view and I must be ready. After a few hours of this the intensity wanes, I find myself struggling between nodding off and remaining alert. The whole time there is a serenity that is present which is difficult to explain to someone who doesn’t spend a lot of time in the natural environment. Many hunters live for moments like these.
Some very generous friends have given me a GoPro camera, which is specifically designed to capture dramatic moments in the out of doors. I believe many individuals who have disabilities are encouraged to challenge their perceived limitations when they can visibly see what others with similar disabilities are doing. There is a plethora of videos on Handihelp for that specific reason. This hunting season I’ve had the GoPro attached to the cradle that holds my gun with the expectation I would be able to capture some turkeys on film. Unfortunately, the turkeys did not cooperate. However, there have still been very exceptional moments. Included are two of them that I was able to capture when nature treated me to very special occurrences. The one shows two of the three deer that came into the field about 30 yards away from me. The second and by far the most unique is one of a beautiful blonde coyote, which passed within 25 yards of my blind. These are more dramatic examples of the benefits of sitting in a blind for hours at a time. Less dramatic, but by no means less striking, are watching the shadows of clouds racing across the field to where you are sitting, or in the fall, watching leaves spiraling down in the wind while sunlight flashes off one side of them as they spin to the ground. Believing at one time these moments were gone forever, I now treasure every day I’m in the natural environment.
Posted in Adapting Equipment, Adaptive Technology, Attitude, Behavior, Determination, Disability, Hunting, Love, Reality, Recreation, Sensitivity
Tagged adapting, control, Environmental Conservation Department, hunting, life lesson, lifestyle, natural environment, nature, outdoors, physically challenged, power wheelchair, quadriplegia, Recreation, turkey, using your mind
If you read the last blog you know that in April Marge and I celebrated our 50th wedding anniversary. My son and daughter-in-law organized a party at the local fire hall and invited many of our close friends and family. As part of the celebration they made a video with many pictures from our years together. The video was looped and ran in the background the entire time. It was while glancing at parts of the video from time to time that I came to the stark realization that the fellow in the pictures taken prior to 1999 no longer existed.
A Different Time
What I Miss the Most
At times, in the morning, when my nurse is getting me up I glance at the wheelchair as she takes it out of the closet and positions it for my transfer. I am constantly amazed at how large and bulky the wheelchair seems. However, once I’m in the chair that idea quickly dissipates. Recently, I have begun to accept my time in the wheelchair as normal and to take it even further I now feel free much of the time I’m in the chair. I believe it is designed to create the sense of freedom. When sitting straight up I see little of the chair and that has become the new normal, the new me. When my mind is occupied I often forget about the wheelchair for hours at a time. Then something will happen to bring me back to the reality of my situation. When this occurs I usually think “Oh my, I’m in a wheelchair.” This is a very strange realization for me coming after over 16 years as a quadriplegic.
Along with this new realization there seems to be a decrease in my physically active dreams where I’m pursuing activities I love without being hampered by any sort of disability. Maybe my subconscious is finally adjusting to things the way they are. What the implications of this are I have no idea, but it does make my time in the wheelchair a lot less stressful and it certainly makes enjoying life a lot easier. I guess that’s because it’s all behind me now.
It’s Behind Me
Posted in Attitude, Behavior, Community Inclusion, Disability, Education, Observation, Reality
Tagged adapting, control, life lesson, physically challenged, power wheelchair, quadriplegia, relationship, using your mind
More than likely you are aware of the great dress debate which captured the public’s attention for a couple days last month. Some people saw the dress as gold and white (left) and others saw it as black and blue (right). The fashion police finally identified the dress as black and blue. What people saw, if I have it correct, was determined by light and certain sensory receptors in the perceiver’s brain.
It always amazes me how two people can look at the same object and see two different things. This happens quite a bit between my son Mark and me. As a result of his engineering training he usually has a different perspective than me. Fortunately, my disability has changed what I see. I’ll give you a challenge. Look at the picture below and tell yourself what you see.
Now this is a perfect example of how what I see has changed since my accident. Pre-injury I would have seen only a slightly different type of broom and dustpan. However, when I saw it a month or so ago I saw, a multi-purpose tool which had nothing to do with sweeping the floor. I did notice it was pretty inexpensive so, I ordered it!
When it arrived I was pleasantly surprise how well made it was. After some minor adaptions I had myself an extremely useful multipurpose tool which enables me to do something I’ve been trying to figure out a way to do for 16 years.
Just below you can see the adaptions I made and one of my new uses of the dustpan. It works better that anything I have made for picking up larger objects. However, the job I bought it for was as a tool which would allow me to feed the dogs when my wife is gone. A challenge I have been trying to solve since my injury. My nurse fills the dog dishes, before she leaves, and places them on the microwave. I am able to get them down on the kitchen counter and slide them onto the dustpan and then lower the dish to the ground. I feel smug every time I do it.
Looking at an object and seeing more than the obvious is a real asset. Oh, I can also use it to sweep the floor.
Posted in Ability, Adapting Equipment, Attitude, Behavior, Determination, Disability, Education, Independent Living, Observation, Reality, Simple Solution, User Friendly
Tagged adapting, control, inexpensive solution, lifestyle, physically challenged, power wheelchair, quadriplegia, User Friendly, using your mind
Great strides are being made to help people who are paralyzed to walk again. Most people believe it is just a matter of time and research until paralysis can be cured. In the meantime, progress is being made to help paraplegics walk. Generally, these mechanical systems are referred to as exoskeletons. Wikipedia defines an exoskeleton as:
“A powered exoskeleton, also known as powered armor, exoframe, or exosuit, is a mobile machine consisting primarily of an outer framework (akin to an insect’s exoskeleton) worn by a person, and powered by a system of motors or hydraulics that delivers at least part of the energy for limb movement.”
Right now it is my understanding that the individuals having the opportunity to use these devices must meet certain criteria. Requirements include age, height and weight, degree of fitness and level of injury. At 6’4″, 250 pounds, 71 years old and the complete C6 quadriplegic, it is obvious; I do not meet the criteria. However, I still have and use an exoskeleton. It is called a power wheelchair and it’s a damn good thing I have two of them. Without one of these exoskeletons I cannot move about at all.
During hunting seasons the exoskeleton I use the most is my four-wheel-drive wheelchair. For a power wheelchair it’s very old. 12 years old to be exact. When it’s working I can pursue my passion which is hunting and being in the out of doors. For those of you who mistakenly believe the purpose of hunting is to kill animals I’d like to try and set things straight. Hunting is about spending time in the environment you love. An environment that shares her mysteries with you as you spend more time with her. Watching leaves spiraling down in the wind while rays of sunlight reflect off their surface, making them look like twinkling stars. Hearing coyotes, yip and howl as they gather together to begin their evening hunt. There is always something to observe while sitting for hours in a blind. You are out there matching wits against natures wiliest of creatures. To them, I’m just another predator. They don’t care that I’m in a wheelchair, they don’t care that I fire my weapon with my mouth and they don’t care I sit in one spot for hours or days matching my skills against theirs.
So not having access to this wheelchair severely impacts my quality of life. While I have another chair, which I probably use 80% of the time, it would be useless in the places I really wish to go. This exoskeleton is for those who want to be on pavement or spend time in a shopping mall or stay-at-home and watch TV. I believe it’s difficult for able-bodied people to truly understand the importance of the wheelchair in the disabled person’s life. It truly is our exoskeleton providing access to the world and I hope it can be fixed quickly.
Posted in Ability, Adapting Equipment, Adaptive Technology, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Hunting, Reality, Recreation
Tagged adapting, control, exoskeletons, hunting, life lesson, lifestyle, outdoors, physically challenged, power wheelchair, quadriplegia, using your mind