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.

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.