Sit Awhile In My Shoes

Sitting in my shoes

I had just finished speaking to a class of elementary students and was leaving the school when a young child came up to me and said “It must be really cool being in that chair”. I was at a wedding reception once when a middle age woman said she thought the chair was pretty neat. She obviously had had too much to drink so I ignored her remark. I know an institution of higher learning that has students spend a day in a manual chair in order to get some sense of what it is like to be so confined. An organization I belonged to had a fundraising dinner to get money to purchase handcycles. When I arrived children and adults were riding handcycles in the street laughing and fooling around.  When they hit the curb they just stood up and moved the bike. I went berserk. I dropped off the board of directors the next day. A psychiatrist I was seeing after my accident said to me once he wished he could trade places with me for a month. He believed he could gain an understanding of what it is like to be in a wheelchair. I know many people feel awkward around individuals with disabilities, but come-on, except for the elementary student, what were the others thinking? If you know your time in the chair is limited there is no way you can understand what it is like. How can an able-bodied person ever understand what it is really like to be disabled?

Living with a disability is not cool, nor is it a game that can played at. It can’t be understood by spending a few hours or a few days in a wheelchair. You must live it to truly understand it. How do I explain to someone the overpowering feeling I get to move my legs? How do I convey the “impulse- like” electrical charges running down my legs telling me they want to move? I had my son cross my legs once when this was going on but it made no difference. How do you explain this to anyone when you are not supposed to have any feeling below your arms; or that I feel so cold most of the time that I wear a knit hat in my house? I can’t even explain that to myself. One of the worst times I experienced was one night, (that’s when my bogymen come out) when the bed motor that raises my torso was not working. I woke up early one morning and had to lie in bed for 5 hours waiting for morning not being able to move or access the things on my hospital table. I just about went crazy. We live in a different world that no one can fathom unless they live there too. Maybe I’m being too harsh, but this is my perception.

Emergency Information Sheet

For any of us who have serious medical issues it is probably a good idea to carry a form that would be available to anyone providing emergency care to us any time.  I have a single 8 x 10 sheet of paper that has information on both sides. I have a copy on both of my wheelchairs, there is one in our van, one in my wife’s car, another in her purse and my nurses each have one. It’s folded in way so the words EMERGENCY INFORMATION are clearly visible. A copy also sits conspicuously in

Emergency information on the refrigerator

 an envelope on our refrigerator. Obviously, the information would vary from individual to individual but also some of the data would be the same.  One side of mine has information concerning Autonomic Dysreflexia which is a life-threatening condition that can develop very quickly when an individual has quadriplegia. The information includes warning signs of the condition and the protocol for immediate treatment. I’ve been to hospital emergency rooms where neither the doctors nor nurses had any idea what Autonomic Dysreflexia was or the potential it has. At the bottom of this section I have the website for the Paralyzed Veterans of America and their phone number where information is readily available on this condition.

Underneath that section I have PERSONAL INFORMATION which lists all the medicine I am allergic to and all the medicine and over-the- counter drugs I am taking morning and evening including dosage amounts. It also lists the drugs taken as needed for pain or other temporary conditions. I update this information every time there’s a change in my medications and I include the date of the last update. The paper can also be given to a doctor’s receptionist instead of filling out forms. Also included are my doctors and their phone numbers, the local ambulance number and my nurses including their home numbers, cell phone and work numbers. My wife’s cell phone number is there since she is my health care proxy, has Power of Attorney and knows where my Living Will is kept.

The opposite side contains more medical information including my address, phone number, date of birth, height, weight, blood type and other unique medical conditions I have. Below that I have a list of previous surgeries including dates and the hospitals where they were perform. The bottom half of this page includes a copy of my Medicare card my secondary insurance card (front and back) and finally a copy of my enhance New York State non-driver license which can also serve as picture identification.

Don’t Rush To Christmas

Before Halloween my wife informed me that stores were already beginning to display Christmas items. We have yet to celebrate Thanksgiving and the majority of the advertisements on television are related to Christmas. I believe retailers are rushing us to Christmas to increase their chances to make a profit. I feel very strongly the Thanksgiving holiday gives us an opportunity to realize how fortunate we really are. I tell people from the minute I had struck the bottom underwater I am one of the luckiest people in the world.

The grandchildren alway bring us joy

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.”  Years ago a psychiatrist asked me to identify as many positive things, as I could, that resulted from my accident.  After a great deal of thought the only thing I could come up with was that I had met some wonderful people. As I think about the question today I realized that there are many things that I really do have to be thankful for. I have been given a second chance at life. (I had no pulse when I was brought on the beach).  Marge, my wife of 46 years, and family have stood by me every step of the way. Everyday Marge goes out of her way to help me enjoy quality of life. My nurses are always willing to go the extra mile.  I have many friends who give of their time to help me do the activities I love. I have surprisingly good health. I have learned more about human nature and the power that exists within the human mind. I have wonderful memories that I am able to revisit. I have been able to continue being an educator and, I hope, help others to deal with the challenges they face. The kindness that is in others has become very evident to me. When we watch the news we often are led believe that there is much evil in society in general but I know that is not true. Finally, even though I am in a chair I have much freedom and opportunity. So, don’t allow yourself to be rushed to Christmas without stopping to realize what you have to be thankful for.

Friends helping me to go kayaking

All We Are

Living It Up

A while ago I saw Milery Cyrus (aka Hanna Montana) being interviewed on Good Morning America about a photo shoot she had done which was appearing in some fashion magazine. To her credit she talked about the two hours of makeup preparation prior to the shoot and the airbrushing that was done to the photos afterwards before they were ready for the magazine. She concluded by saying this process would make any individual look beautiful and sexy. This was quite a mature, candid and astute observation for such a young woman. During my 34 years of teaching I was constantly trying to help students see themselves in a more positive light. When we are subjected to negative interactions in our daily lives we tend to wonder what is the matter with us. When in reality, we should be thinking what’s wrong with the other person. We are bombarded daily with messages of what the ideal image and lifestyle for us should be. Few, if any of us, can live up to these unrealistic expectations. The majority of people seem to be less than satisfied with their physical features. This is very evident when we look at the rise in cosmetic surgery over the past few years. As Oden Black pointed out in his last blog Love You. Love Me! “We look in the mirror and see deficiencies, which are compounded by everyday negative comments and messages we receive from those around us.” Our society worships youth and perfection. How many times have you turned on the television or opened a magazine to see a celebrity who has had so much plastic surgery they are hardly recognizable. There is an additional obsession for many people to look young and in shape, and many individuals take the shortest and quickest methods available to achieve this goal such as liposuction or dangerous fad diets. If I paraphrase Buddhism’s Four Noble Truths we can begin to see a way to relieve some of this way of thinking.

Suffering is due to desire                                                                                                         

Trying to eliminating desire                                                                                                      

Will lead to a life with less suffering

Several years ago I was seeing a psychiatrist who asked me if I could identify any positive things that had come as a result of my condition. After several minutes of thought, I said I had met some wonderful people, but could think of no others. He then suggested to me that I no longer had to worry about vanity. What a ridiculous statement! If anything I’m more vain. In fairness to him, like most of the doctors I deal with, he had little experience with someone with my disability. The point I’m getting at here is that most people in society have hang ups about the way they look and the way others perceive them. So, as individuals with disabilities we are not as different from others as we may think we are. We would all be much more content and enjoy our lives much more if we accepted our physical selves the way we are and allow nature and the aging process to follow their normal courses.

As Matt Nathanson has written in his song “All We Are”

I kept falling over
I kept looking backward
I went broke believing
That the simple should be hard

‘Cause all we are we are
All we are we are
And every day is a start of something beautiful, something real

All we are we are
All we are we are
And every day is a start of something beautiful, beautiful