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Living With Ability
 
Sharon on Kilimanjaro

Sunday Dec 9, 2007

I am living with ability, or more accurately put, living with changing abilities. It has been said that, `the only disability in life is a bad attitude'. Helen Keller said, No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit

Good morning, my name is Sharon van Abbema. I agreed to speak to you, as it may be therapeutic for me to do so, and also I enjoy a challenge from time to time. I can only hope you will be totally inspired and not doze off before I'm done.

In the sixties, I was an elementary school teacher for the Toronto Board of Education. In the seventies I was a mother of three children, one red head girl, one very blond haired boy, and our youngest, a chosen daughter, dark skinned with black curly hair. Karen joined the family while we were living in Trinidad in 1970. Baby Shangoor was what the Tacarigua Children's Home called her. I discovered her while doing volunteer work at the local orphanage.

Her dark brown eyes told me in no uncertain terms that I should spring her out of there. And so Karen came to live with us before she reached the age of two, and returned with us to Canada. After our stint in the West Indies, we moved on to Newfoundland for seven years.

Life on the rock was wonderful for the most part. My three children went to elementary school and their mother, me, at age forty, decided to become a middle aged athlete. I started with a slow jog along the shoreline in Middle Cove as the caplin were coming in and gradually progressed to run a mile. Finally I joined the Y and ran with others. I was feeling great and becoming quite fit.

Long story short, my interest in running continued to grow and so did the distances I was doing. Soon a five km run around Quidi Vidi Pond was a piece of cake. I loved doing it'Lacing up my New Balance shoes was my routine 7 days a week. I started a women's running group in St Johns, 12-15 women would gather at Quidi Vidi and we would proceed to run together, catching up on news, laughing and whooping it up like a bunch of school girls, as we made our way around the pond..

I played squash, competing in many tournaments, I played tennis, These athletic endeavours in my late thirties and forties held much more interest than getting a real job, or heaven forbid, tackling house work. My first marathon was in 1979. A National Marathon held in Newfoundland, with runners coming in from all parts of Canada, what a high, 26 miles, 385 yards.. I had caught the bug of long distance running and completed five marathons before I hung up my sneakers.

Moving along into the 80's, when I was 46, I ran away from hearth and home to make my way to Nairobi, Africa via Montreal and London England to do a month long safari in Kenya with a group of 7 other adventurers. Africa was always in my dreams as a place I would like to experience. In the old days when I was a child, missionaries came to our local evangelical church and told us with great sincerity there were black people going straight to hell. They needed to hear the gospel, and we should think about going to give them the good news.

A pit of fire was graphically portrayed, with children and their parents tipping over the edge into the inferno. And so began my first experience with nightmares. I was eight years old. I thought maybe I would be a missionary and help those poor Africans.

Forty years later, missionary aspirations were gone. I signed up for a month long safari, a camping, hiking trip in Kenya. The highlight of this journey came about in the last week when the van carried us across the Kenyan border into Tanzania to arrive at Mount Kilimanjaro. Our group was prepared to take on the 19,000 foot climb to the summit through the clouds, looking with surprise at planes flying below us as we made our way up. .

The climb was accomplished in five days, three days up, two days down, but that is another story. The challenge of Kilimanjaro was magical and memorable. I was able to truly experience Ernest Hemmingway's Snows of Kilimanjaro, even planting a small Canadian flag when I reached the top.

Where am I going with all of this? Well, time moved along and so did my first husband. The three children had also flown from the nest. Long story short, in 1990 I married John, both a widower and an avid hiker. We climbed Mt Carleton, Mt Washington, did a 7 day trek in the Presidential Mountain Range in the Appalachians, and best of all .... several three day trips along the Fundy Coast each May 24 weekend. I still marvel that we could carry our accommodation, food and clothing, 26 lbs worth, all in a backpack and I wonder how it is that these days we need a 2,000 square foot home to hold the stuff that seems to be so necessary to have.

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Those were wonderful years as John and I became acquainted with each other .... and eventually our children, his three and my three, got used to the idea of a marriage in the family involving their parents as the key players. I continued to be an avid hiker and cyclist, until in 1995 when my life did a turnabout face.. AND here is the rest of the story.

My legs gradually became strangers to me, feeling as though someone had filled them with cement. It was an effort to walk. I could not keep up to my 85 year old mother when we did her fitness class together at the seniors centre in Ontario. I stumbled, my walk was uncertain. The feeling was cotton wool stuffed behind my toes, then tingling, then numbness in my feet. I knew that the health I had taken for granted for more than 50 yrs, was changing. My doctor did not have a clue, and suggested I get more exercise . So began the period of my changing abilities right up on to this present time.

After a year of looking for answers, it was John who found the answer. He is an avid newspaper reader, no column is missed. Dr Gott was answering a question in his medical column. The question asked that day .... What is peripheral neuropathy? The answer was brief, two short paragraphs. John handed the article to me, saying I think this Dr is talking about you. As I read, tears streamed down my face, tears of joy for finding the answer, or tears of dismay when the seriousness of it all struck me ... not sure which. Dr. Gott confirmed I had a chronic condition. Mysteriously the myelin sheath around the nerves was dissolving and nerves were becoming less able to connect with muscle, resulting in atrophy, inflexible ankles, compromised balance and weakening leg muscle, no prevention, no cure, no treatment. Mine was the idiopathic kind ... no known reason. Go home and live with it, accommodate, my neurologist told me. When you need a walker or a cane or leg braces, or a wheelchair, get what you need to make your life easier. Neuropathy won't kill you, don't worry about it, others have worse conditions than you have. It will just change your life somewhat. Balance will be poor. Do your best to avoid falling so you don't break anything.

I would like to say at this point, that I got on with my life and kept smiling. Not true .. first a pity party two or three times a week, profound sadness, denial, grieving, then anger big time. This continued for several months. You should take up quilting I was told by a well meaning friend; .... me who can barely thread a needle.

Well ... that is when I had a bit of an epiphany I guess. I had a serious talk with myself. I would not allow this situation to get a hold of me and spoil my life. I have often heard that there is no dress rehearsal for life, I had to get on with it.. As Helen Keller said .... one cannot consent to creep, when one has an impulse to soar. I knew no one with this weird condition. What could I do? There was no help from my doctors. My computer informed me of a national conference coming up in Denver Colorado, 2001 three days of speakers, neurologists, workshops all about neuropathy. John said, Let's make it a getaway weekend. We will get information and then we will find out what we do next

The National Neuropathy Association with head office in New York, put on a very informative conference. We met over 300 others with the disorder, some in their twenties, most in their fifties and sixties. Canes, walkers, wheelchairs were all there. I noticed many of the participants were zoned out on drugs to mask the pain they endure. I was wall walking. At this point, a well loved woman in my life, my spiritual mentor, called from Ontario and told me she had heard via the grape vine that I had an incurable chronic disorder. I want to pray for you, she said. How shall I pray? She was a 91 yr old woman, with a strong faith, an avid student of scripture, and most importantly, a great believer in prayer. I told her to forget about asking for a cure, records show there is none. But I would be pleased for her to ask that I have no pain. She died a year later, but must have focussed on my request with great effectiveness, as I have very little discomfort. This fact encouraged me to start a Neuropathy Support Group in Fredericton three years ago. .

Where am I now? These days, I sport not one cane, but two canes.. I also wear leg braces .. AFO's they are called. Ankle Foot Orthotics. They are a wonderful help, keeping my weakening feet and rigid ankles in a good position for walking, thus eliminating footdrop. Footdrop and poor balance have caused two major mishaps in the last five years with broken bones resulting, so braces are a good thing. I fought them, avoided them for two years due to my own foolish pride.

One day this past summer, when I was protesting, `no braces, no braces', my doctor hiked up his pant leg to show me his leg brace that gives him the support he needs. He was much younger than I was. Common sense finally prevailed and braces are now a part of my wardrobe. I had finally moved into the acceptance stage, with some reservations. I came to the conclusion that being in denial, being angry, being in a state of grieving are not helpful in my ever -changing life.

I am on a journey towards wellness as much as I can achieve. I used to feel so isolated, not knowing anyone who has my disorder. The conference in Minneapolis 2004, gave me more ideas. There I met 25 American Neuropathy Support Group Leaders and learned from them how to start a support group in my own community.

I thought .. why not ? They can, why not me? I don't have pain, I can do anything I make up my mind to do. Six months later and with much trepidation I put an ad in the Gleaner and three women showed up. Next month , two more came, we numbered five. This was three years ago. Now we number 52 contacts in the Fredericton area alone. We begin our fourth year in February of meeting every month. 12-15 men and women get together with me at Stepping Stones Seniors Centre. We support each other, we have speakers, and we do research. It is good to know there are others who understand the journey you are on.

Dr Mohammed Shafiq is my wonderful neurologist. He attends our support group meeting each June to do a presentation.in the afternoon following his prayers at the mosque. We are a team. He does not have 1 ½ hours to spend with each of his patients. He is only one of three neurologists in our capitol city. Members of the support group come out in full force, 25-30 men and women who are interested in getting more information and, more importantly, to have him answer their many questions.

This journey I am on, is not easy. It is full of challenges, shattered dreams, problems to solve. Someone once said ... DESPAIR IS HOPE'S ABSENCE AND IT IS THE ENEMY........... DESPAIR ROBS THE HUMAN CREATURE OF VITALITY AND WELLNESS.

I came across those pithy words and thought .. how true. I will not despair. Despair is the enemy, it leads to boredom, bad habits, and a feeling of helplessness and futility. I cannot afford to have those feelings, I must have hope. I do have hope, even with my changing abilities.

These days, I embrace emerging experience, I participate in discovery. I am a butterfly, not a butterfly collector. My pity parties happen only once in a blue moon. Time is moving along, and I remind myself that there is no dress rehearsal for life. This is it, so I get on with it as well as I possibly can. I can do nothing less.

It is interesting to meet others who are on a similar journey as mine. Neuropathy is chronic, it is debilitating, it is progressive. We go from year to year, we have to adapt, make changes, get more equipment, accept more help, and maybe even lose our independence.

John and I sold our Suzuki and Honda motor scooters only three years ago. Maybe one year I will be the proud owner of a motorized scooter. Time will tell. In the meantime, through Savages Bike Shop, I got myself a 21 speed recumbent bike. With this bike, I can cycle 12-15 km at a time. The bike trails here are a great asset and I make good use of them.

As is often said .... If life hands you lemons, just make lemonade, kick back and enjoy what you can. Sometimes I get sick and tired of lemonade. I manage to surround myself with supportive people. I try to use my energy wisely. Life is full of changes for everyone. If we are living, we are experiencing change continually. It is a wise person who does not give undue power, and attention to the negatives in their life.

Actually if I were to be quite honest, having peripheral neuropathy has turned out to be a gift to me .. almost dare I say it .... a positive?? It brings out the generosity of others. It has opened opportunities for me to help those who live in isolation and fear because of their condition. Neuropathy has introduced me to some of the finest people in North America.

20 million Americans are affected by this disorder. The USA has approximately 248 support groups, some as large as 80 people attending, The country also has neuropathy centres at several leading universities, New York, California, Michigan and Massachusetts, to mention a few. In contrast, Canada has 2 million individuals who are living with neuropathy. Our country has 2 support groups, one in Calgary and one in Fredericton and zero Neuropathy Centres. We have a long way to go to get information out to those who have this condition. I am happy to play a very small part in this.

My life is rich with many interests and passions and friendly people and a supportive husband ... and I must admit it would be hard to find time to do a back packing trip or a century ride on a two wheeler these days. I would have to give something up. There are never enough days in the week. As Helen said, What we have once enjoyed we can never lose. All that we love deeply becomes a part of us. I guess that means friendships and experiences. I repeat, the only genuine disability in life is a bad attitude.

So ... this is my life so far, my story. I will continue to be actively involved. I live well with changing abilities. This is what I choose.