The Gift

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.

This Is For Linda ( but you can read it too)

I have a
good friend who is struggling with some very challenging issues in her life
right now. At times, she feels overwhelmed and depressed. If you have never
gone through times like these, most likely you will. In the Austin Powers movie,
The Spy Who Shagged Me, Dr. Evil had Fat Bastard steal Austin Power’s
mojo. The rest of the movie was about Austin’s effort to recover it.

In real life
no one can take your mojo, self-esteem, dignity or whatever you want to call it,
unless you let them.  Each and every one
of us already has the inner strength to handle any challenge or crisis that may
confront us.  This becomes very obvious
when we look at people who have dealt with or are dealing with a major crisis in
their lives: Helen Keller, John McCain, Lance Armstrong, Christopher and Dana
Reeve, Kevin Everett of the Buffalo Bills, Bob Woodruff of ABC News, Elizabeth
Edwards who recently lost her heroic battle with breast cancer, and more
recently Congresswoman Gabrielle Giffords. While these people may be famous
they are really no different than you or me. I am sure you know not so famous
individuals who have demonstrated the same inner strength. Did these people get
something at birth that we didn’t receive, of course not. These individuals may
have approached their challenges in different ways but they all found the inner
strength to deal with them. For final proof positive, I’ll turn to Rock And
Roll which I believe holds the answers to all of life’s mysteries. The group
America in their song Tin Man sings:

                       “Oz never did give
nothing to the Tin Man

                         That he didn’t, didn’t
already have…”

Think about
the verse above. If you have ever watched the Wizard of Oz, it makes perfect
sense. The basic truths in the movie are why to this day it remains a classic
for children and adults alike.

The question
now becomes how do we marshal our inner strengths? I believe we must face life
experiences head on, with a positive attitude looking at circumstances as a
challenge to be dealt with rather than a problem to be solved. Realize some
struggles will be long and that at times situations can become very
discouraging, but that is normal. Colin Powell said “There are no secrets to
success. It is the result of preparation, hard work, learning from failure.”

We should
never allow others to define who we are. As with a bully teasing a child on the
school playground, the child should never say, “What’s the matter with me but rather
what’s the matter with that bully.”  So
remember no one can take your mojo unless you let them!  Oh, if you’re reading this and you’re not
Linda, don’t worry; she’s going to be fine.

If I Need Help I’ll Ask

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.”

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.