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

Struggling

I have not written in a while because I have been struggling for several months with a significant health issue which has resulted in a high level discomfort during most of my waking hours. After the initial adjustment to my disability, I felt as though I was successfully handling most issues most of the time and adapting to the circumstances I found myself in. Currently, the ability to place things in perspective and reassert control over my situation has escaped me. I have become depressed, frustrated and withdrawn compounded by my seeming inability to gain control over my emotional state. I know the power to deal with this challenge is within me, but I have been unable to tap into it. We are still at the point where we are trying to identify the possible cause or causes of what is taking place. Early next week there should be a clearer picture of what is going on and what options are available to rectify the matter.

 This situation is an almost constant reminder of what my disability means. None of the possible solutions are very desirable. I find myself slipping into a spiral of self-pity which does nothing to help the situation. The almost constant physical discomfort makes marshaling my mental strength to fight this challenge extremely difficult. The fact that I have been extremely healthy over the last 11 years does not help matters either. Naively, I had done little to prepare for additional health problems. I feel compelled to write this blog so people understand the struggles most of us with major disabilities experience on a constant basis. I have likened the situation to a juggler keeping a number of balls in the air, and as more balls get added. It becomes more and more difficult to maintain the skill.

Turkeys

 On October 1st turkey hunting season begins, and I am hoping that this endeavor will occupy my thoughts and mind and will help provide me with an avenue for gaining better control. The turkeys and deer I hunt do not care that I am in a wheelchair and it is irrelevant to the game that I use my mouth to fire my gun. All they know is that I am another predator and that is all I want. Interestingly, this morning 13 turkeys showed up in my backyard to feed at the birdfeeders. I will take that as a good omen for developing a more positive outlook. By the way I never hunt these birds.

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