Marge, Bosco and Foxy
Last week my wife brought home a very special gift. It was a gift of unconditional love for everyone one who lives in our home. The gift was a 3 month old Bassett Hound from the SPCA. His name is Bosco. We have always had a dog and very often more than one. However, since my “accident” we have only had one, a lovable mutt named Foxy. We got Foxy about eight years ago after finding out service dogs could cost anywhere between $15,000 and $18,000. I believed it would be possible to train her to pick things up for me, but Foxy had different ideas about what she was going to do. Picking things up was no problem for her, but then she wanted to play her favorite game tug-of-war for which I was no match. She went to, but flunked out of, obedience school. Foxy is a free spirit and we did not wish to destroy that characteristic, so we discontinued with the training. Foxy owns us and she knows it; and so our life went until about a year ago.
Marge decided Foxy was lonely and needed a playmate. The debate went on for over a year, Marge trying to come up with rational reasons and me trying to put the folly of the whole thing into perspective. Given the extra demands placed on Marge by my quadriplegia, I thought it totally wrong to bring into the family another member who would require even more of my wife’s attention. Two weeks ago the scales were tipped in favor of getting another dog. Our neighbor’s brought home a second dog, a cute puppy which looked like a St. Bernard. Foxy when to the edge of her range and barked and whined. The decision was made.
Saturday morning Bosco arrived. We were anticipating an adjustment period of days, if not weeks, but to our surprise it was hours. Foxy’s playful nature and maternal instincts quickly got the best of any reservation she might have had. I guess I could say the same thing for Marge. I must digress for a minute here. For several weeks prior I had been locked in a battle with Medicare and our secondary insurance company over a repair issue with my wheelchair. After a week or two I was totally frustrated. It was affecting me physically and mentally, and I was strung pretty tight.
Foxy quickly decided Bosco was going to make a great playmate and proceeded to test the theory for several hours.
- Bosco & Me
Finally, both dogs tired of the frolic and began to settle down. Marge picked up Bosco and put him on my lap. The impact was immediate. I could almost feel the tension leaving my body. The puppy grunts and his smell soothed my psyche. Talk about pet therapy! It was instantaneous! Bosco sat with me in my wheelchair for over a half an hour. Several times I drove around the house and he was as contented as could be. After I pet him for awhile my fingers began to relax and return to a more normal position. Check out the picture. Bosco accepts me as I am and neither expects nor desires any more. He tries to climb up my leg in an effort to get on my lap. When he is on my lap it is almost like being in a meditative state. One of the great things about love is the more you give the more you have to give.
Tags: attitude, living
Behavior, Disability, Education, Living with a Disability, Love, Observation, Reality, Relationships, sensitivity | Rich Fabend | 
April 20, 2011 4:20 pm | 
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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 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.”
Tags: ability, attitude, control, living, quadriplegic, wheelchair
Behavior, Community Inclusion, Disability, Education, Living with a Disability, Observation | Rich Fabend | March 22, 2011 1:35 pm | Comments (0)
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.
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.
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