I am happy to provide some heartwarming news about my nurse’s son Devin. He is out of danger and after about four weeks is out of the hospital. He had a strep infection which had entered his blood stream. It took a while for the doctors’ to figure out what was wrong because he was not stable enough to run many tests. His blood platelet count was so low fellow sailors were donating blood for him. Since he was unable to eat a feeding tube was inserted. Breathing was difficult so he was intubated. With this illness finally under control Devin left the hospital 20 pounds lighter. He will be on convalescent leave for two weeks while he regains strength and weight and then is expected to return to active duty.
Filed under: Community Inclusion, Education, Observation, Reality, Sensitivity | Tags: life lesson, lifestyle, using your mind
You can’t be a member of the disabled community without having asked yourself that question many times. Most likely there is no plausible answer, which is why we keep asking the question in the first place. When I speak to groups I am amazed that so many people believe life is safe and that we are almost always secure in our environment even though I believed that myself before my own accident; life altering occurrences were something that happened to others. A while ago I wrote a Blog entitled “Wishes and Daydreams” (April 2010) where I talked about my envy of my nurse’s son who was graduating from high school and entering the United States Navy to become a corpsman. Well, almost three years have passed since I wrote that and he is a corpsman stationed at a large naval hospital on an island in the Pacific Ocean.
Devin was home on leave in February and looked terrific. He’s just 20 years old, is a fine young man and a credit to his family and country. While here, he expressed concern for several of his buddies from corpsman school who had been assigned to the United States Marine Corps and sent to Afghanistan. Devin was concerned for their safety and felt he should be there, too.
Last week he was not feeling well but thought he was just getting a cold. Long story short, he is now in the intensive care unit of the hospital, seriously ill with an unidentified illness serious enough for the Navy to fly his mother and father to be with him. His condition is such that he is not stable enough to be medevac’d to the mainland. How ironic, his buddies are at the end of their tours in Afghanistan and coming home, and he is the one gravely ill. Why?
What a terrible reminder to all of us of the frailty of life. Most of us have already experienced it first hand and had the lesson driven home to us in an all too real way. To stress how precarious life can be, the staff at Craig Hospital, where I went for my rehabilitation, often refers to individuals without disabilities as TABS (Temporarily Able Bodied). We can reduce our chances of having major trauma by following cautious behaviors. The greatest daily risk faced by most Americans is automobile travel. The potential risk of being hurt in a car accident, like most risks, can be reduced by following certain procedures such as wearing your seatbelt, driving within the speed limit, not driving when your ability is impaired by alcohol or drugs, and avoiding behaviors which distract your concentration from driving, like talking on a cell phone. However, all the precautions in the world guarantee nothing. We are still vulnerable and often at the mercy of circumstances beyond our control.
I believe there are a number of lessons here for everyone from this situation, not just the disabled community. We must take time to enjoy every day. We should realize that our situations could still change in an instant. Instead of feeling sorry for ourselves, we should accept what has happened to us and make the best of our situation regardless of our own circumstances. Finally, we can stop asking why and just accept what is. We will be much less frustrated, mentally healthier and better off in the long run. It seems to me the best answer to the question WHY comes from Travis Roy who 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.”
Filed under: Behavior, Community Inclusion, Disability, Education, Independent Living, Personal Safety, Reality, Sensitivity | Tags: life lesson, physically challenged
Don't Mess With The Big Boys
I called S.T.A.T. Communication, the parent company of Lifenet. They were here within the hour. They could not be sure the problem was with their unit but replaced all the equipment to be on the safe side. For a brief period of time the phone worked okay, but shortly the same problems began cropping up: no dial tone, in the middle of dialing the line went dead, not receiving calls and similar problems. My wife called for technical support but could not get a live person. The automated machine informed us that a repairman could not come until June 1st. I refused to accept this and called Customer Assistance. They told me I had the wrong department and connected me to Technical Support. After waiting 20 minutes I finally got a “real” person who assured me someone would be at my home in the morning.* No one showed the next day. When I called in the evening I finally got a “real” person who said the service slip was lost*. He then promised* me again someone would be here first thing in the morning. I was up and ready for the day around 10:30am, but no one had come. I called Verizon and after quite a run-around was told* a serviceman would be here in the afternoon. I’m sure you have guessed by now that no one came. At this point I called Customer Service and asked to speak to a supervisor. Making an effort to remain as civil as possible, I explained my situation and the treatment I had been receiving. When I finished she asked me what I would like her to do. DUH, I told her she just didn’t get it and hung up. Undeterred, I called Technical Support again and, after a while, was told a repairman would be here in the morning. Fat chance of that I thought, because the next day was Saturday. I really need to apologize, how could I have doubted the word of this corporate giant. However, the repairman arrived and was wonderful, explaining to me he just received the work order that morning. After working on the transformer by the road he told me he thought he had fixed the problem.
Since Saturday was the beginning of Memorial Day Weekend I waited until May 31 to call Verizon to explain the disgraceful treatment I had received. I called the number of the Department for People with Disabilities. After listening to music for 20 minutes I got a supervisor who was very understanding of my plight and frustration. Imagine my bewilderment when she told me Verizon does not have a Complaint Department or even anyone you can file a complaint with. A pretty clever Verizon idea I thought. She explained my account did not have a medical emergency tag; it used to but for some reason it no longer did. She offered to connect me with the people who could rectify the oversight. I thanked her and dutifully waited on line for about 15 minutes. The new associate listened to my story for about 10 minutes before informing me she could not help me because she was in California (another Verizon joke, I assured myself). She offered to get me an associate in New York, where I live, who could help me. Another clever idea I thought. The fellow who answered must have been aware of the time I had been waiting, so in 5 minutes said he would send me a form I could fill out.
But, I was not done; I called the Better Business Bureau in New York to file a complaint. Prior to speaking with a “real” person you must fill in certain information on line. The company you are complaining about must be in their data base. Can you imagine my surprise when neither Verizon, nor the Verizon Phone Company nor Verizon Communications were in their data base! Now I WAS done! After all what do I know about the workings of a large corporation like Verizon, I thought FiOS was a dog.
* I don’t want to use the term lied
Filed under: Behavior, Community Inclusion, Disability, Education, Personal Safety, Reality | Tags: life lesson, quadriplegia, risk
For the most part I live, by choice, in a small world. I have always been a very private person. Of course that changed quite a bit 12 years ago when I became a quadriplegic. I have a nurse that comes in every morning for 2 ½ to 3 hours. She helps me with my morning hygiene, gets me dressed and in my chair ready for the day. I retired seven months prior to my accident and the greater majority of my time was spent pursuing my love of the outdoors. I still find time to continue the recreation activities that I love. But almost anything I do now has to involve others and it’s still hard for me, at times, to ask for help. Much of my time now is spent on the computer writing blogs and placing information on my website. My wife calls me a “mouse potato”.
Last week I got an e-mail that awakened me to a harsh reality. The sister of a friend had given my name to a friend of hers, who had a friend, who in turn had a friend whose husband had broken his neck while in the water off a beach in Hawaii. He had been stabilized and they were looking for information about rehabilitation hospitals on the mainland. I did all I could, giving information, sending information and offering myself as a resource. I was shocked to find out their insurance did not cover an air ambulance flight to return them to the mainland. If she could secure a large amount of money the plane would come then. His wife was overwhelmed, struggling to try and get the money together and make the decision of selecting the best rehabilitation hospital.
This event awakened some frustrating and painful memories for me. I also broke my neck while standing in waist deep water. I had to be transported by boat from the island of St. John which had no hospital, to the island of St. Thomas. As I fought for my life in the hospital my wife was in shock trying to make arrangement for my return to the US mainland. The air ambulance refused to leave Florida until my wife had $15,000 in hand. We had a Visa card with a line of credit of $5000. We always paid our entire monthly bill on time and saw no reason for a higher line of credit. Even though she contacted the emergency number on the card, they were unwilling to increase our line of credit after hours. If we had had a platinum or gold card the plane would have come right away. If you get nothing more from this blog, know that you should not leave the US mainland without a platinum or gold credit card. Thirty-six hours later I finally arrived at the hospital in Syracuse New York. The next six months until we returned home remain like a foggy dream to me.
Shore Break Sign
The terrible experience of this husband and wife I’d never met was a gut wrenching reality check for me. Scenarios like this are taking place a umber of times every day. Why must all these additional demands be placed on somebody who is already facing a catastrophic challenge? We live in the United States of America. Why must anyone want for assistance at a time like this? Members of our government would never find themselves in this situation. Why should anyone else? Why shouldn’t every person in America have the same care available to them that is available to our members of Congress? Why should anyone far away from their home who has suffered a catastrophic accident have such additional demands placed on their shoulders? What are we missing here?
Filed under: Attitude, Behavior, Community Inclusion, Disability, Education, Personal Safety, Reality | Tags: adapting, control, life lesson, lifestyle, physically challenged, using your mind
In the 1980s, during the summer, I was an instructor for State University of New York College at Cortland for their 2 week Outdoor Practicum a course required for all Recreation and Leisure Studies majors. The students stayed at Camp Huntington on Raquette Lake in the Adirondacks which is owned by the College. During the first week students were taught outdoor skills they would use the following week. When the instruction was finished students were placed into groups of 8 to 10, assigned a staff member and then taken on a 6 day wilderness experience where they used the skills they had learned. Travel was almost always by canoe, portaging between lakes.
One summer I had a young woman assigned to my group who was legally blind. Prior to our trip she and I met privately to discuss what her expectations were for the experience. I had noticed while we were in camp she could be very defensive and abrasive at times when others tried to assist her. I felt she failed to grasp that they were only trying to help. She was very upfront with me about being allowed to do things herself. We agreed that I would not step in to help unless she asked for assistance. In return, she promised to do whatever I asked of her immediately and without hesitation. There were some potentially dangerous pitfalls on the route where immediate compliance might be necessary for safety.
The trip we devised would incorporate an opportunity for her to use as many of her senses as possible. We climbed down to Raquette Falls so she could feel the spray from the rapids on her face and listen to the roar of the water. We climbed a mountain called Ampersand near Middle Saranac Lake. The climb is very demanding and lasted several hours even for able-bodied individuals. The trip proved to be a great success and I remember to this day her telling me on the summit of Ampersand, “Now I know I can do anything if I put my mind to it.”
The Group On The Top Of Ampersand
How ironic that I now find myself in the same situation with people often offering to help me do whatever it is I’m trying to do. It’s been my observation almost everyone’s gestures are well intended. Most want to convey their empathy, but sometimes I have to remind myself of that. They don’t realize their effort could be misinterpreted as, “I don’t think you can do things for yourself”; for example, when a waitress asks my wife what I would like to order, implying I am totally incapacitated by my disability. When I talk to a group I always drop a piece of paper on the floor. Ninety-nine percent of the time someone moves to pick it up for me. My wife usually intercedes to stop them. When I’m ready, I pick it up using my paper-pick-up tool. I drop a bottle of soda, a piece of a jigsaw puzzle, a book and one by one pick them up; in public schools the audience usually applauds. I tell them these are not tricks but rather ways that I have developed to function independently. I like to say disability does not mean inability. People need to understand that members of the disabled community are not totally helpless. And members of the disabled community need to remember people offering to help only have the best of intentions. So remember to tell people, “If I need help I’ll ask.”
Filed under: Ability, Attitude, Behavior, Community Inclusion, Disability, Education, Observation, Reality | Tags: adapting, control, life lesson, physically challenged, quadriplegia, using your mind
Tripping in Canada
To be a member of the disabled community does not and should not imply we all have the same physical and mental challenges nor do we share the same needs for help and assistance. However, I also feel very strongly that there are certain attributes which can be cultivated which can make living with a disability easier.
When I came home from the rehabilitation hospital and my physical health improved I became desperate to regain some control over my life. In addition to the physical results of my accident I was dealing with tremendous mental anxiety which left me frightened to be alone, afraid of the dark, fearful of the unknown and scared to be in certain places or positions. I started having night terrors and was anxious over my inability to exercise any control over my environment. Prior to my accident I prided myself on the control I had. Having been a licensed New York State Guide for over 23 years, I had taken many trips into the wilderness. I enjoyed the fact I was self-reliant and ready to handle any situation Mother Nature might place me in.
As my health began to improve I knew I had to gain more control over my environment. This was the beginning of what I now call learned empowerment. I was fortunate to have a determination that helped me face challenges head on. I believe attitude is the critical ingredient for empowerment and important in the early stages of recovery but less so after time. With quadriplegia, initially you seem to be at the mercy of everything and everyone. Little or nothing seems within your control. It became vital for me to regain control of some things regardless of the price that had to be paid. The demons came out at night so that’s where I began. Small things at first such as leaving a light on at night, having an MP3 player next to the bed (which I could only turn on using my teeth), an oversized remote for the TV available, a pill box with Xanax within reach and a bed control clipped on my shirt which allowed me to raise myself in bed. As I was able to regain my control in a few areas, I began to realize I could do it in other situations as well. And so began my empowerment. As my ability to exercise control improved, it seemed to become less important because I realized I could do other tasks if necessary.
Struggling to take off shirt
However, this learning process took years. It was extremely difficult for those around me. They had to be passive observers while the one they loved struggled to master a task. I can remember my wife sitting on the edge of the bed while I attempted to take off my shirt to get ready for bed. Initially it took well over an hour. Imagine the strength and love it took for her to watch me struggle without interfering. The restraint she showed is a great example of when doing nothing is really doing something. I’m sure it went against all her nurturing instincts. Nothing in this new life comes without hard work, frustration, failure, modifications and persistence.
This entire process begs the question what can those of us who have dealt with these issues do for the individuals who join our disabled community every day. What assistance and support can we provide both to help these individuals to minimize adjustment time, ease frustration and regain more control of their daily lives?
Filed under: Ability, Adapting Equipment, Attitude, Behavior, Community Inclusion, Creative Ideas, Disability, Education, Independent Living, Observation, Reality | Tags: adapting, control, lifestyle, physically challenged, quadriplegia, using your mind
Christopher & Dana Reeve
Several months ago I was contacted by the Christopher & Dana Reeve Foundation and asked if they could do a profile on me which they did: “Once a Teacher, Always a Teacher”. This January they contacted me again and based on the information on my website I was asked to start and moderate a group on the Christopher Reeve Foundation website. The group is called Learned Empowerment and I would like to extend an invitation to you to join. You must first join the Christopher & Dana Reeve Website which is free. I hope the group develops into a place where both individuals with a disability and those in any way affected by the disabled community can share ideas, shortcuts for various tasks and mutual support.
Filed under: Attitude, Behavior, Community Inclusion, Disability, Education, Observation | Tags: life lesson, lifestyle, physically challenged, quadriplegia
I looked at my nurse and asked her if she just heard what I heard? She said she did. It usually takes me anywhere from 2 to 2 1/2 hours from the time my nurse arrives until I’m in my wheelchair ready for the day. We often have the television on and watch Good Morning America, Dr. Oz and then The Doctors. Besides being quite entertaining the programs are also rather informative. The quote I had just heard was from a commercial for a local business which sells wood burning stoves, fireplace inserts, spas and pools. The statement was included in their advertisement for a line of stoves with the brand name Quadra-Fire. Having quadriplegia myself, I am well aware that “a quad” is often used to refer to those of us with this disability. At first I made some jokes but, as the day wore on, the statement really started to bother me. How could anyone be so insensitive? The more I thought about it, I began to realize that many people are oblivious to the special needs community. Rather than call the store and complain, it seemed to me, that it is much more important to EDUCATE society.
When I go out in public I consider myself a “Special Needs Ambassador”. I try to act that way all the time. Each of us is a role model for “our members” whether we want to be or not. The entire time we spend among the public we are being evaluated by others whether we want to be or not. If my premise is correct, then we must constantly project what we would like others to perceive about all our brothers and sisters. I believe my actions and behaviors should reflect the problems and frustrations that are part of living with a disability, as well as, how to cope with such challenges. I have no desire to be felt sorry for or pitied I just want people to see and understand the reality of having a disability.
Last week my wife and I went out to lunch. The restaurant was quite crowded and probably it would have been easier to go somewhere else, but then why should we. I navigated through the narrow aisles which required some people to move a little and rolled up to an empty table. I am a big man and have yet to find a restaurant where my knees will fit under a table. I have a tray which fastens to my chair but causes me to stick out into the aisle a little more. My wife brings my own utensils, drinking cup and shirt protector (aka bib). When my meal came she had to help me get the burger in my hand. As I eat I will inevitably begin to lose control of a sandwich and some of it will fall on my chest. The last portion must be eaten out of my hand because I cannot let go of it. Likewise, when my leg bag needs to be emptied we do it discreetly but do not isolate ourselves from others. Hopefully, some people will begin to realize the implications for a person with a disability.
Applying a few of the 10 Simple Principles found on ThisAbled website to this idea
Believe that you as a person with a disability are equal in value to the people around you.
*Believe that you have something society can benefit from.
*Understand that your disability makes you unique not different.
Do not let others define your goals or measure your success.
*Educate the young
I would like to modify the last principle above to include EDUCATE the rest of society through our actions and behavior. When I was in the rehabilitation hospital I heard people referring to non disabled individuals as TABS (Temporarily Abled Bodied). We can help TABS understand that life is not as safe as many believe but involves risk and at best is unpredictable. Hopefully, able bodied individuals will begin to realize that they or someone they know could join our group at any time.
Talking with a class of 6th graders
