I Want To Know What Love Is

I What To Know What Love Is                                                                                      

I want you to show me…   Foreigner

Since Valentine’s Day is Monday I will give you an example of what love is because I can’t show you. My wife Marge and I have been married 45 years.  At my son’s wedding I was asked to give a brief talk. The following quote was part of what I said: “The last 29 years have been the best of my life. Marge and I have shared laughter and tears, good times and bad, joys and sorrows; but more then that, we have shared our dreams, our inner most thoughts, our strengths, our frailties, and we have shared our love. Marge has always been there when I have needed support.  Things that happen to me when we are apart are not complete until I share them with her. Only with Marge can I truly be myself and completely relax.”

Less then 5 years later I had my accident. The accident did not just happen to me, it happened to my family but since we had an “empty nest” it was really Marge who had to shoulder the majority of the responsibilities. The readjustment was greater than we ever anticipated. It took a long time. I like to tell people that our dog realized in a few weeks what it took me years to figure out and that was that Marge was now the alpha member of the family. Many couples, unfortunately, do not survive the consequences of a readjustment of this magnitude. We were very fortunate to head into it with a strong relationship built up over 35 years. More often than not people tend to focus on me and the challenges that I have had to deal with. I think many give little thought to the tremendous responsibilities placed on the spouse. My wife epitomizes the wedding vows and lives up to Tammy Wynette’s call to “Stand By Your Man”. Marge, not only cooks and manages our home, she also oversees all my care issues, chauffeurs me everywhere I have to go and puts me to bed every night. I owe my good health and lack of complications to Marge’s supervising my care.

Birds at a feeding station station

The hardest part of my adjustment is having to watch Marge deal with the physical tasks that have been thrust on her. Yesterday and today February 10 and 11 we received several feet of snow (check the roof of the dog house in the picture). We have a wonderful neighbor who keeps our driveway plowed and open. But there is still a lot of physical work she must do like shoveling the front walk and bringing in firewood. There are also activities she chooses to do like feeding the birds. After my accident we decided that the birds would be a wonderful source of entertainment for both of us. I have built some bird feeders and we have feeding stations all around our house. The snow from the storm is waist deep so movement off paths is extremely difficult. Both yesterday and today I had to watch Marge shovel her way across the lawn, pulling a sled full of birdfeed behind her. She had to shovel in several different places to reach all the feeders. She returned to the house tired from her struggles. Why does she do it? After all it is not necessary; the birds would survive anyway. Marge struggles to feed the birds because she loves them and because she loves me. So Foreigner that’s only one small example of what love is!

Cardinal & Sparrow feeding during the storm

 P.S. If you know Marge please don’t mention this blog to her because she doesn’t want me to write about her.

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