Monthly Archives: May 2013

Today is WORLD MS DAY.

WMSD29May2013_english-e1362406476687       MS is a disease of a thousand faces.  It is a disease of change. It changes with each individual.  It is a disease of tomorrows.  We deal with our difficulties today hoping that our tomorrows will be positive.  I will live in the today but I will strive for tomorrow one step at a time. We are not that different from you.  Please do not dismiss us!  And do not see only the disease.  We live, we love, we feel pain and disappointment.  Accept us for who we are and love us for what we could be.  As we do you.

People are capable of adapting to almost any situation, but it takes time. It also takes effort, a lot of thought and perhaps a change of attitude. MS is not a death sentence, it is a life sentence.  Our lives can be full and valuable not just to us but to others as well.  Individually we are ambassadors.  Together we will cure this disease.

I find joy in my life almost every day. It is the journey that I am taking that is important not the destination. This disease is a part of my life, but it is not my life. And I am not alone. Collectively we are responsible to the world at large to try and live an accountable life but more important is what we contribute to that world.  Today is a good day. If we are optimistic the possibilities are endless and hope is eternal.

 

Advertisements

I am important too . . .

I recently read an article about animals being using for medical experimentation. It is a horrible practice.  However if the use of animals for scientific experimentation is morally wrong, what do you tell the people who suffer from incurable diseases?  People like me.  How do you explain to them that their suffering is not as important to the world as the suffering of animals?  How do you explain to the child that is unable to walk that we can’t look for a cure because animals must have their rights?  What about the rights of the child?

Every time there are complaints about the sins of medical experimentation they show the most adorable animals with sorrowful eyes and vulnerable demeanors.  Just once I would like them to show the eyes of the child that is dying of an incurable disease.  I would like them to show the demeanor of the man forced to watch his wife die slowly from a degenerative and fatal disease.  I would like them to watch a close friend deal with debilitating pain for which there is no cure.

I do not like animals to be harmed in any way.  In a perfect world all animals would be able to live their lives as nature intended – free.  Just in case you missed it, this is not a perfect world.  Our towns and cities grow and animals are displaced.  We slaughter animals for food and clothing.  We are predators.  We use animals in medical research and I can only hope it is done humanely. I may not like it but I will continue to support it.  I want them to find a cure and unless some of these activists are willing to take the place of the lab rats, I will continue to condone the use of animals.

I need to believe that there will be a cure for multiple sclerosis.  I need to believe that there are people who are trying to find a cure for this disease that has robbed me of so much.  I will not apologize for my disability as if I am an embarrassment to the healthy people of the world.  Listening to some of these activists it is if they want me to one day cease to exist and cease to be an embarrassment. Animals are important to this world in many, many ways.  But so am I.

 

 

 

Life, Love and Loss

One year ago I lost someone dear to me.  My mother was 89 years young when she died.  But for 89 years she was more alive than anyone I have ever known.  She loved her family and her friends completely and without reservation.  She respected strangers unless they disrespected someone she knew. She was a 5’3” firebrand!  I have seen her stand up to a 6’ man because he was rude to a waiter.  He backed down and apologised. She once stopped the car she was driving, in a busy intersection, because a kid in the back tossed something out the window. Never dare her to do something, because she would.  She was fearless.  People loved her and she never understood why. My mother was my friend, my confident.  She believed in me when I didn’t.  She saw not only the good in people but the great they could be.  When she was in her twenties she flew in a tiger moth.  It was a small open plane. When she was 87 years she went up in a glider plane.  Like I said, fearless.

Tiger-Moth-flying  mom at 89

In the past year I have come to terms with a deep hole in my life. I know that death is a part of the cycle, part of life.  Hopefully we are capable of living fully because we know our time is finite. I also know that both of my parents are still with me.  My father died January 3, 2007 of pneumonia after five days in hospital. My mother died May 17, 2012 after being ill and bedridden for five days. I am the product of my parents.  Yes their DNA is swimming through my veins but they also guided me from an infant, through the angst of youth and the rigors of adulthood.  They allowed me to make my own mistakes, and learn my own lessons, but they were always near.

I am proud of the person I have become and I know they were proud of me as well. I have hefty role models to live up to. They taught me that we should always aspire to be more than we are.

I am not alone.  I have a brother and a sister, a brother-in-law,  a nephew, cousins, aunts and uncles, and friends close enough that I call them family.  I am truly not alone.  Some days I would trade everyone for another day with my parents.  I’m sure everyone that loses someone they love feels the same way.  But they are truly always with me!  And I have a life to live.  The only way to have a good life is to live it in the forward position, one step in front of the other striving for the future and enjoying the present while respecting the past.  Each day has something positive and beautiful in it.  And I intend to exploit every day in the nicest possible way!

Like lifeboats in time, memories remain.

I own a Stupid Phone.

 

What you ask is a Stupid Phone?  It is a cell phone that makes, wait for it, phone calls.  It does not surf the web, it does not send emails, it does not calculate the rate at which people lose brain cells.  I punch in the number of the person I wish to speak to and this Stupid Phone connects to that person.  And I love it!

I know a great many people who have Smart Phones.  They spend all their time on these clever devices and less time talking to other people.  Oh yes the art of talking!  It involves the use of a mouth connected to vocal cords, a brain and someone to converse with.  There are no wires or pretty flashing buttons to impede the conversation,  just two people with something to say and the ability to listen.  Ahhhhhh the good old days!

I sit in a wheelchair.  I write using a computer and a program that allows me to speak as the computer types.  I also have a laptop for use on the go and a tablet that allows me to read because I can no longer hold a book.  I guess this means I’m going to have to give up my membership in the Luddite Consortium.

I used to love to camp in the wilderness.  There were no televisions, no radios, no computers or phones of any kind.  A Luddite oasis.  And then MS reared its ugly head and I was bound to technology.  I own a computer, television, radio, alarm clock, wheelchair… the list appears endless.  I’m a prisoner of the modern age.  I am bound to technology by chains of necessity.  Oh woe is me!  Seriously, the pity card?!  I’ve got it damn lucky and I should be thankful for what I have!

I am thankful.  I live in a country that takes care of me regardless of my disability and I have the financial wherewithal to afford the toys that make my life easier.  But I also miss the days when I could escape from technology.  I could sit beside a roaring fire and look out over a lake with no light pollution from a surrounding town.  I would listen to the sounds of the forest and the water and the sky.  I could hear animals rustling in the undergrowth, fish leaping out of the water with wild abandon and the haunting cry of a hawk hunting for its dinner.

Now I can hear the traffic whooshing by on a busy road outside my window.  I hear the hum of my computer and someone’s phone ringing as they are walking by on the street.  A technological world is full of white noise.  Because it’s always in the background we tend to ignore it and soon we don’t even hear it.  But some days I miss the sounds you get surrounded by nature.  It is no more quiet than civilization is, but somehow it is relaxing not jarring.

I will continue to use my technology and I will remember fondly those times when I was without it.  I will also continue to use my Stupid Phone.  It is my one dissent against a technological world that I need but do not want.

 

 

Professionalism

This is a word that is often used to describe people in the workforce and the manner in which they deal with the public.  Unfortunately I don’t think it’s a word that can be used as often today as it once was.  My father was in a store a number of years ago and was asking a young female clerk for assistance.  The 20 something child hopped over to my father with a big smile and said “what’s your name?”  At the time my father would have been in his mid to late 70s.  He was a distinguished man always well dressed and well-groomed.  He replied to this individual with the comment “My name is Mr. Read.”  Unfortunately this impertinent sales clerk didn’t get the hint.  She laughingly asked for his first name.  He replied: “Mister”.

When my father came home and told us the story we laughed.  It was a silly story at the time but now it is becoming indicative of the lack of professionalism that exists in the world.  I was in a donut shop not that long ago and I had an interesting incident. There were three people behind the counter.  One was a gentleman dealing with a customer and the others were two young ladies who just looked like they were standing around admiring the wall paper.  I couldn’t see the products because the counter was in the way so I asked if they had a list of the choices.  The two young women looked at me as if I had three heads (I don’t!!!) and said nothing.  I asked again, they looked at each other and one told me that everything was laid out at the back for me to choose.  I must admit that at this point I became convinced I was not dealing with Rhodes Scholars.  I explained that I was in a wheelchair (duh!!) and that I could not see the back wall because I was sitting down (DUH!) and could not see over the counter.  I asked again if they had a list.  At that point I asked if they knew what a list was.  I am not the most patient person I know, not even close.  At that point the young man finished with a customer and handed me a list.  He said it was not complete but that he would try to help.  Finally, the brains of the outfit. I looked at the list and made my choices.  Satisfaction.

I have to wonder if it was the chair that intimidated those two women or the fact that I asked them a question they were not prepared for.  These were not small children.  They were young, attractive women.  I do not think of myself as intimidating but then I am also not a meek, wallflower.

More and more I’m finding that the clerks I deal with if they are over 40 treat me with respect and professionalism.  If they are younger than that they often tend to be living in their own world and they will condescend to assist me if absolutely necessary!  I once went into a shoe store and this sweet young thing was on the phone with her, I’m assuming, girlfriend complaining about her recent boyfriend and chewing gum.  She looked up when I came through the door and went back to her phone call.  Am I missing something?  Has the decision been made that people in wheelchairs aren’t people anymore?  Cuz honey I missed that memo!  If necessary I will speak up and at first politely demand assistance.  Of course politeness is only the first salvo.  I will get cranky.

Professionalism and common courtesy should be the way everyone is treated.  Now civility and professionalism is becoming noteworthy simply because it is so rare.  How unfortunate.  Change is a fact of life.  Evolution does not stop because we like where we are.  We’re constantly evolving and changing.  It is my great fear that we are de-evolving and changing for the sake of change instead of with forethought and for the greater good.  How very sad.

I cannot control the manner of the clerks I deal with, I can simply treat them with the respect that I believe I am due and hope that somewhere in their teeny, tiny brains they figure it out.

My strength is the result of necessity.  I will not let rampant crass indifference spoil an otherwise beautiful day. Places to go, people to see, toes to . . . oops!