Maybe 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.”
Posted in Attitude, Behavior, Community Inclusion, Disability, Education, Friends, Friendship, Reality, Sensitivity, Stuggling
Tagged Caregiver, control, depression, life lesson, physically challenged, quadriplegia, relationship, using your mind
The Amazon Echo is one of those products made for able-bodied people, that has the potential to improve the lives of thousands in the disabled community. The Echo is available in 3 three different models and I assume more features are found in the larger sizes. The Echo Dot is the smallest and least expensive at $50 yet it provides everything most would want. Once plugged in, connected to your Wi-Fi and programmed the Dot becomes a tremendous asset. In order to set it up you must download the Amazon Alexa App, which is free, to your iPhone or iPad. Then, verbally you can speak to Alexa the Echo’s voice and she will perform many simple daily tasks. She can give you the local weather, a news update, play any kind of music you may be interested in, but her abilities far exceed those simple chores. She is able to read any book found on Kindle or Audible. You can have her wake you up every morning to either an alarm or music. Alexa can play soft music while you fall asleep and then shut herself off at a predetermined time. She can also be used as a timer by telling her the time duration you want her to set up. You can make shopping and to-do lists and then transfer them to your iPhone. You can even order directly from Amazon. While, I have not used it, it is my understanding that the Echo also enables you to call and speak with other individuals who also have an Echo.
Amazon Echo Dot
However, for one with a disability, the Echo’s most useful features is the ability to turn your home into a Smart Home. A variety of Smart equipment is available, at very reasonable costs, which will allow you to take control of most of your appliances and devices verbally. I now have the ability, through Alexa, to turn off and on my CPAP machine as well as the lights in the bedroom. There are Smart Plug-in Outlets, Smart Wall Switches, Smart Door Locks, Smart Thermostats and even accessories that will let you control your television with Alexa. For those of us with range of motion issues, poor dexterity or limited mobility the Echo Dot provides an inexpensive yet simple, convenient way for many to take greater control of their home environment with only your voice.
Amazon is constantly increasing the ability of the Echo to perform tasks. These improvements, unlike those with computers, do not have to be downloaded into the unit itself. Instead the new program is uploaded to the Cloud and is instantly available to your Echo.
Posted in Adapting Equipment, Adaptive Technology, Attitude, Community Inclusion, Disability, Education, Independent Living, Observation, Reality, User Friendly
Tagged adapting, Caregiver, control, creative idea, inexpensive solution, life lesson, physically challenged, quadriplegia, society, using your mind
>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 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 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.
Posted in Adaptive Technology, Community Inclusion, Disability, Friendship, Humor, Reality, Sensitivity, Simple Solution
Tagged adapting, control, creative idea, inexpensive solution, relationship, User Friendly, using your mind
The light, from the full moon, was twinkling off the water as we slid our kayaks into the lake. We had paddled here many times before, but there was always something special when paddling under a full moon. The small little lake hidden off an old road in Jefferson County, was absolutely beautiful. It was probably close to midnight when we loaded the kayaks back on the truck and headed for home. Little did I realize that the time it would be many years before I would return.
After my accident in 1999 I wondered if I would ever go back and paddle on this lake again. In my mind, I set it as a goal not knowing if it was even realistic. In the rehabilitation hospital in 1999 I read a quote in a book written by Christopher Reeve. It had a tremendous impact on my attitude toward my own rehabilitation. Reeve said:
“I refuse to allow a disability to determine how I will live my life. I don’t mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery.”
I began kayaking again in 2003. We had to start from scratch. No information was available on quadriplegics kayaking. Progress was slow. It took a group of people for me to go at all; as a result, I only got out a couple times a year. So improvements and adaptions were slow. Once I even tipped the kayak over and since I was completely strapped in and my hands strapped on the paddle would have drowned if it wasn’t for the quick thinking of two members of my “entourage”. Despite all of that, progress moved ahead, first pontoons, next a stadium seat whose back was raised by a local machinist, chest laterals were added and after much additional tweaking during my one paddle last year I decided everything was stable enough to go for my goal. Through all these years I was paddling on a large pond owned by good friends of ours. But in the back of my mind always was the dream to return to Payne Lake.
Steve fishing for bass
Yesterday, I awoke from the dream, many times in our lives, we imagine certain events happening and when they do they fall far short of the scenario that had been created in our mind. Yesterday the experience exceeded everything that I had hoped for. We paddled for several hours. My wife and I together on the water for the first time in over 18 years. The lake whose aesthetics I could only dream of were more imposing in person. By sheer accident, I paddled up on a heron, which I was unaware of, until I was almost on top of her. We watched her fly from spot to spot and even saw her catch a small fish. My friend Steve, without whose help I would not do half of the things I do, had a bass launch out of the lily pads to take his lure, but it slipped the hook during some aerial acrobatics. I live for opportunities like this.
What a special day.
The moral of the story is don’t stop dreaming. Dreams really can come true if you continue to work on them and refuse to give up.
Posted in Ability, Adapting Equipment, Adaptive Technology, Attitude, Behavior, Determination, Disability, Education, Friends, Friendship, Love, Nature, Observation, Reality, Recreation, Sensitivity
Tagged adapting, Caregiver, life lesson, lifestyle, natural environment, outdoors, physically challenged, quadriplegia, Recreation, using your mind
The song Simple Gifts is a hymn written in the 1840s by a member of the Shaker Community. The Shakers were a religious sect that migrated to America from England in the late 1700s. Their religious principles focused around being satisfied with the simplistic existence and the natural environment. The community produced a lot of very simple items which they sold to maintain their existence. The items stressed simplicity and functionality. You may have even heard of Shaker furniture which is still prized today by many people.
Every season seems to bring with it particular “simple gifts”. This spring was no exception. I have been struggling with an extended period of depression, but with the arrival of spring came certain “gifts” that I always look forward to. One of the earliest is, after a long, cold winter, just sitting in the warmth of the sun and feeling my body warm. (Sitting In The Mornin’ Sun)
Another of nature’s simple gifts is the arrival of the birds which have migrated south for the winter. Many of those returning are notable because of their beautiful colors such as the Baltimore oriole, the Rose Breasted Grosbeak and the Indigo Bunting. Being confined to a wheelchair encourages one to spend more time bird watching than when able-bodied. Two of my favorite species to observe are not brilliantly colored, but are enjoyable to watch because of their fascinating behavior and their willingness to live close to man. Since my injury, we have done much to encourage birds to share our environment with us. Every year swallows, set up house in the same nesting box. I have written about them before too. I love to watch them in flight because of their ability to change direction instantly darting left and right as they pursue insects. It’s hard to watch them fly and not believe they are enjoying every second of their lives. While the female is sitting on the eggs the male, who I have named Captain America, sits on top of the eagle on the top of the flagpole and will defend the nest against all comers.
Baltimore oriole at our feeder
The birds, however, that I enjoy watching the most are the House Wrens. Last spring my wife went out to hang some clothes from a clothesline. She reached for a clothespin and realized there were a bunch of sticks protruding from the bag. She slowly opened it and saw it was a bird’s nest with three eggs nestled in the sticks. After some searching on the Internet we discovered it was the nest of house wrens and spent much of the summer observing their behavior. This year, being unable to find the clothespin bag we hung out a <a that I had made during the winter in the exact same spot and were not disappointed as the wrens quickly began building their nest in it.
A female house wren bringing in a sack of spider eggs into the nest. It’s believed that when the spiders hatch, they eat some of the mites that have been brought in by the adults and then when they get bigger they are eaten by the growing wrens.
With both the wrens and the swallows, the males participate in the raising of the young. Below is a video I took last year and last week, which looked like the final day of nest building. The female is now sitting on the eggs while the male spends much of his time sitting on the laundry line poles waiting for the eggs to hatch. Once hatched both the male swallow and wren are totally involved in feeding the chicks and protecting the nest. We have no way of knowing if these are the same birds from last year.
What I enjoy so much about watching these birds is their devotion to each other, raising the young and their seeming enjoyment of life itself even though it’s hard work and demanding. While we humans are ever striving to modernize our lives and gain more possessions, the habits and purposes of these birds have changed very little over time. I think we could all benefit by not being so quick to adopt change for change’s sake to improve our daily lives and be happier with the simple gifts. And, oh yes, the time spent observing and videotaping the birds goes a long way to improving my outlook on life.
*All of the pictures and videos contained in this blog were taken on our property
Posted in Ability, Attitude, Behavior, Birds, Community Inclusion, Education, Nature, Observation, Reality, Recreation, Sensitivity, Stuggling
Tagged control, depression, life lesson, lifestyle, natural environment, outdoors, physically challenged, Recreation, society, using your mind
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
We can call him Tommy and he definitely was a son of a bitch. Even given that, everybody still like him and he was popular in the neighborhood until he was hit by a car. Unfortunately, Tommy’s back was broken and he was left paralyzed. After that people didn’t seem to care about him that much anymore.
Then Tommy met Susan Fulcher and she was ready to help Tommy just like she had helped dozens of other dogs who were paralyzed. Susan runs the Dharma Rescue Organization in Los Angeles California. As I watched the video and listened to the reporter on the CBS Evening News last night I knew this was something that I wanted to share. Each dog is fitted with a custom “doggie wheelchair” and then helped to adjust to their new lives helping others.
What struck me about the report was the dogs’ ability to quickly overcome and adapt to their disability and new life. I started thinking they must have accepted what had happened to them, did little or no reflecting about the what ifs and so were ready to move on. While I was going through rehabilitation at Craig hospital, I was overcome by the thought that my new life would be unproductive and I would just exist until I passed away. After a while, I began to realize what happened to me in my new life was almost completely under my control. I made some mental (attitudinal) adjustments and began to move on with a more positive outlook. These dogs just move on approaching their new life with enthusiasm and thus have the ability to help others. It is absolutely critical, I believe, for an individual who has suffered a catastrophic life changing event to accept what has happened to them and move on. Little good can come from dwelling on what has happened and wondering about the what ifs.
It was years ago, after Christopher Reeve’s injury that his attitude of nothing was going to prevent him from walking again caused dissension in the disabled community. He finally realized and accepted the fact that he would be paralyzed for the rest of his life. I don’t think an individual can move forward with their life if they refuse, at least on a conscious level, to accept what has happened. Let these dogs serve as an example of what can be accomplished if we are willing to accept what has happened to us and move forward.
Posted in Ability, Attitude, Community Inclusion, Determination, Disability, Education, Friendship, Love, Nature, Observation, Pet Therapy, Reality, Sensitivity
Tagged adapting, control, lifestyle, physically challenged, quadriplegia, relationship, society