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
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.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Independent Living, Observation, Reality, Stuggling, Wounded Warriors
Tagged Courage, depression, lifestyle, physically challenged, relationship, society
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 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
Posted in Behavior, Community Inclusion, Disability, Education, Observation, Reality, Recreation, Stuggling
Tagged depression, Insensitivity, quadriplegia, society
Those were the words I whispered to my nurse in the shower this morning. I was in the midst of a panic attack which had started shortly after I woke up. Early on after my injury I had them all the time, but now I only get one or two a month. At the earliest signs I have learned to take the medication prescribed for them. Waiting, hoping it will go away only allows it to get more developed. Once the symptoms start, it’s just a matter of time. I’ve never been diagnosed with PTSD, but I have most of the symptoms. They usually begin with my legs. There is an overpowering, all-consuming urge to move them and at times, like today, that’s combined with the fact that they feel like solid cement. There are no words to convey the overpowering attitude that takes over my mind. These attacks are characterized by facial distortions, crying and the feeling of being totally out of control. Sometimes I thrash and want to throw myself out of bed, but it is impossible because of the quadriplegia. It scares the hell out of me.
At times like this I have seriously considered smoking marijuana in an effort to totally change the way I feel. I have never smoked it before and am anxious about my mind would react to it. Craig Hospital, where I did my rehabilitation, is strongly opposed to marijuana use by those who have been paralyzed.
This morning it took almost 3 hours for my medication to take effect. The peaceful calm that I feel when it kicks in is a welcome relief to the terrible anxiety I have been feeling. Usually, after I’m up I get tired and fall asleep for a while. The struggle one goes through can only be understood by one who has been through it. It’s all consuming.
The question at this point becomes what can one do about it? The feeling, while it is going on, is like being possessed and rational thought is impossible. Well-meaning intentions of others are irrelevant. It’s been over 17 years now and I have no idea or advice for dealing with these. The only good thing about them is that they always end.
Posted in Attitude, Behavior, Community Inclusion, Disability, Education, Reality, Sensitivity, Stuggling
Tagged control, depression, life lesson, physically challenged, quadriplegia
Within recent days I’ve received emails from several friends all struggling with the challenges presented to them by their disabilities. Of them, I am the oldest and I’m pretty sure I have been dealing with my disability the longest. I wish I could do something or make a potion that would make these challenges disappear. But, I know, as they do, that dealing with these crises is not that simple.
Andy and his grandson
Early on, after my injury, it was so important to me for people to understand that my injury was the result of an act of nature rather than a situation I had brought on myself by poor behavioral choices (i.e. Drunk driving). I didn’t want people thinking he got what he deserved. I was always grateful that my quadriplegia was the result of my pursuing an activity that I loved. Even though I was standing in waist deep water when caught by the wave I had actually been body surfing for several hours. A couple of the emails were from people who had been injured while mountain biking. Another was result of the onset of cancer and complications after a stem cell transplant. All causes were out of the individuals’ control. Why them, why me, these are questions we may never find the answers to. Personally, I feel all my pre-accident life was a preparation for my life now. It is comforting to me to think Handihelp, the blog and my public speaking may be helping others, which is all I wanted to do when I became a teacher.
What can be done, what words can be said to ease the physical and mental struggles that those of us in the disabled community deal with almost daily. It’s been my observation over the years that the best “solution” lies in the individual’s mental makeup. The single most important factor is an attitude which can be manipulated. If you look at my early blogs, most of them deal with that topic. When speaking to groups there are a number of observations that I have made over the past 17 years that I believe will be helpful in putting life and life challenges in perspective.
* Life is not fair and owes us nothing.
* Anger, over time, is detrimental to moving on.
* Life is precious; each day is a gift and one should take some personal time each day
to enjoy it.
* Life can be good again, enjoyable again, but it will never be the same. The
sooner a person realizes and accepts that, the better off they will be.
* The most powerful “tool” we have in adjusting to our situation is our mind/attitude.
* It may be difficult, but to ask for help is not a sign of weakness, and
there are many people who wish to help, but you may have to take the initial step.
* Love is an amazing thing, the more one gives, the more one has to give.
* A pet can play a major role in the life of an individual with a disability.
* Love makes everything easier.
* You can’t do it alone. Friends make our lifestyle much more bearable.
* There is a solution to most of the challenges one faces. It’s just a matter of how
much thought, time and effort you are willing to commit to finding it.
* Frustration and struggle will always be part of this new lifestyle.
* Nothing comes without sacrifice.
* Advice is easy to give, but much more difficult to take and even harder to act on.
* Laughter is essential.
* We are all stronger and more capable than we think.
* Life is full of risk.
What a comfort she was
Will this help others? I hope so, but it has helped me.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Love, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, Courage, depression, dietary considerations, life lesson, lifestyle, physically challenged, quadriplegia, using your mind