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.

Crossing Over

It’s estimated that approximately 10, 000 individuals suffer permanent paralysis from spinal cord injuries (SCI) every year in the United States. While most are ordinary citizens sometimes it happens to well-known celebrities like Christopher Reeve. Reeve, a famous actor, was probably best known for his role as Superman in a number of movies in the late 1970’s. Reeve’s fall from a horse in 1995 left him a quadriplegic.  As an activist for SCI he brought much attention to this condition. He died in October 2004.   

 Christopher Reeve and I have several things in common besides quadriplegia. Although uncommon we, both had very little atrophy as a result of our paralysis. In the 12 years since my own accident I have lost only three quarters of an inch off my calf muscles. Another thing we had in common is that neither of us had ever dreams with ourself in a wheelchair. The only exception for me was one night, after a very nerve-racking out of control situation during the day that really scared me. Excluding that single time, I live in two worlds; the reality world where I am physically confined to my wheelchair and the dream world where I am free of any constraints. Many mornings I wake with pleasant memories from my night’s sleep. The dreams are extremely vivid and realistic, filled with physical activities rooted in my pre-accident life. I am often running through open woods pursuing a turkey I hear in the distance. (I am an avid hunter)  At times I’m riding my bike at a frantic pace feeling the wind on my face. Other times I am swimming in the Hudson River where I grew up as a child. Recently, I dreamed I was lost in a large construction site which was more like a maze than anything else. Frantically I tried to get out; running, jumping over obstacles, climbing and even lowering myself over walls and then dropping to the ground. My dreams seem so realistic that often I am disappointed when I have to get up and “change” worlds.

Reality

 As I’ve grown older I have begun to think more frequently about dying.  I don’t consider myself a religious person but rather more of a spiritualist.  For a Christmas gift I received a CD of Christmas music by Annie Lenox. Besides the moving song Universal Child I found a wonderful explanation of her personal religious beliefs in the jacket lining. She wrote:

“While I don’t personally subscribe to any specific religion, I do believe that the heart of all religious faith has to be rooted in love and compassion, otherwise it  serves no purpose.

For me, the word ‘Christ’ represents the sacred and mysterious divinity of life… this could just as easily be ‘Buddha’ or ‘Allah’.

The words from the Bible, the Torah, or the Koran are too often misused to justify viewpoints that oppress defy or create discord rather than engendering empathy, harmony and respect for each other, accepting and embracing our differences,  whilst realizing that we are all human with the same strength and weaknesses.”

 Friday night I had another very vivid and physically active dream. I was running and climbing in a beautiful fall woods. I was with two neighbors from where I used to live. I could hear the leaves crunching under our feet as we ascended the hill. Periodically, we would stop at a clearing in the woods to look at the beautiful vista that was open before us. My friends were much younger than I was and so I was constantly trying to catch up. When I did, we would stop, talk, drink some water and then we were off again. After a while I became aware of a buzzing noise which seemed very out of place. I realized it was my wife’s alarm clock; and slowly and very reluctantly I began to return to my other world. I have no personal belief in heaven or hell but I spent the better part of the morning thinking how wonderful it would be if the process of death could just be the Crossing Over from my reality world to my dream world.

Dream World

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.