Monthly Archives: June 2013

A Time For Change

Sept 2012 007

No I am not talking about changing your politics or changing your underwear . . . although . . . never mind.  I am talking about changing attitudes.    Not everyone has a problem with people who are different, just a notable minority. That process of changing their attitudes is on going and never-ending.  Where we can make a huge difference is in ourselves, our attitudes.  Yes we are ambassadors for everyone in a wheelchair but we are also ambassadors to ourselves.

I have often joked that the legs at the end of my hips weren’t mine. They certainly were not acting like we had any kind of relationship. I couldn’t walk, I couldn’t stand and if I wanted to move my foot I had to use my hands to do it.  Ever since I was told that I needed to give myself permission to fail occasionally I have been rethinking my legs.  Because I have no other legs to change to I will have to find a way to get along with the ones I have. As a parent did you ever have a child that would not listen to you, would not obey any rules you laid down? Those without children, did you ever have a dog that refused to come when you called?  Well my errant appendages are like that.  Did you stop loving your child or your dog because of a difference of opinion? No, you found a way to make it work.  I have an arm that is awkward to use.  It doesn’t open properly and I can’t straighten it out fully.  So I do more things with my other arm.  I adapt.  People are capable of adapting to almost any situation it just takes time and effort, and a lot of thought.

I spoke to a man once who had lost one leg to diabetes.  He was inquiring about buying my van.  During the course of the very pleasant conversation I learned that he had just recently lost his leg.  I was surprised.  My illness came on me very slowly over a period of years.  He went from two legs to one in a matter of minutes.  I don’t care how much you prepare for such an event it must have been traumatic. This man was upbeat, laughing, totally in control.  He had made peace with his situation and was in the process of adapting to it.  This man was and is an inspiration to me.  Here I am frustrated with my legs and he is moving on with his life.  I must admit I was a little ashamed of myself.  I can get hung up with such unimportant things.  I am a well-adjusted (sort of), intelligent woman.  I can adjust when I need to, it just takes a little effort.  And perhaps a change of attitude.

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Believe?

 What do you believe in?  Do you believe in a supreme being that has mapped out each individual path?  In which case there is no personal choice, our lives are fated and we cannot change the course it must take.

Or do you believe that our lives are self-directed?  This would mean that  each path we cross will have an impact on the choices we make. Or perhaps it is a combination of both.  There is a supreme being who offers us choices and we must choose the path to follow.  I must tell you, from my perspective, that supreme being has one hell of a lot to answer for! Not that I am in a hurry to shake his or her hand, but come on.  You give me an incurable disease, make me pay a fortune for the ‘stuff’ to function in today’s society and then have the audacity to make it rain!!!  It must be tough being omnipotent.  Nothing surprises you ‘cause you caused it all.  Boring!

I do not belief that what happens to us is merely at the whim of a supreme being anymore than I think we have full control over our lives.  We are born naked and innocent.  From that moment we are constantly bombarded with information.  Our parents, our siblings, doctors, bus drivers, everyone we come into contact with throughout our lives has an influence on who we become.  How we deal with adversity is a result of that lifelong input.  We cannot control the world around us, just how we react to it. Our belief structure is based on the need for acceptance.  It also helps to have someone else to blame.  “The devil made me do it.”

How we deal with disease or any perceived imperfection is directly related to our beliefs, be they spiritual or secular.  No one is perfect.  No one is without any redeeming qualities.  And as hard as it may be, your belief in others and in yourself will get you through anything.

The Dark Days

They will happen. They may last days, weeks or even months.  MS is like that.  It lies in wait and just when you think things are going extremely well, they are not  When I become sad I try to do several things.  If I watch a sad movie I can cry without the MS being the reason.  I can also watch a very funny movie or read a very funny book.  Laughter does help. Tea to me is a wonderful panacea.  I know it is just a beverage but it is calming to me.  I try not to call on family or friends because I do not want to verbalize what is happening.  It just makes it all too real.  Now that is really odd.  All the experts say you must talk to someone when you are depressed.  I agree, completely.  I am not depressed, I am sad.  You may think it is the same thing but there I disagree.  Depression is severe sadness, it can cause you to harm yourself and it can alter your emotional balance, make you imagine the worst is happening.  I am fully aware of what is happening to me and I can adjust, but I will not go easily.  I do not like what is happening to me and yes I am aware of what could happen.  We all deal with certain amounts of sadness so I am not any different than anyone else.  Of course when it is happening to you it is always THE WORST.

 I will get through this, I will adjust.  So will you.  You have survived this long.  Do not give up the battle, do not go quietly.  Scream if you have to, beat on a pillow (not your significant other!!)  Find something that works for you. You can do it, I can do it.  Chin up.  Look out world, here we come

I would wait for you…..

I have multiple sclerosis. MS is a disease of choices. You can choose to live, or you can choose to have a life. It is also a disease of adaptation. You can adapt to fit the world around you, or you can force the world to adapt to you.

I know this all sounds very confusing but I will explain. When I was diagnosed many years ago I was given a choice. I could curl up in a little ball and feel sorry for myself, or I could take hold of this disease and wrestle it to my will. I may not be able to control the course of this disease, but I can control how I deal with it.

I can no longer walk. Does that mean I no longer go out? Not a chance. I do have to adapt somewhat. I have wheels and trust me they ain’t half bad! I can go quite a distance on my own or I can take a bus, they are outfitted now (at least it Oakville) There are cabs that can accommodate wheelchairs and scooters. So you see there really is no reason for me to lock myself in my room.

I understand that there is some concern about how people in wheelchairs are perceived. I have had several incidences where I had to deal with other people’s perception of my abilities, simply because I’m in a wheelchair. I left no doubt in their minds that I am a person. I am not a wheelchair. I use a wheelchair the same way you use a pair of shoes. Do the shoes that you put on your feet every day define the person you are? No, of course not! In exactly the same way the fact that I’m sitting in a wheelchair does not define who I am. It is simply part of the definition.

When I’m faced with an activity that is difficult I identify exactly what it is I want to accomplish. And then I find a way to make it happen. Let me explain. I used to type. Actually that was part of how I made my living. I was quite good at it. When my disease progressed to the point where I could no longer use my hands effectively, I had to find another way to type. I was introduced to a program for my computer that allows me to speak and the computer to type. I love technology! So I continue to write to my heart‘s content.

Another issue I faced was my kitchen. The cupboards above the countertop were impossible for me to reach. So I adapted my kitchen. I had a small shelving unit built to fit along one wall and placed in it all the items I use on a daily basis. Problem identified, problem solved.

One of the things I have maintained since I was first diagnosed was that no one knows this disease better than I do when it comes to me. I have doctors, physiotherapists, occupational therapists, nurses and pharmacists who are my support. I have the final say. There are no books on how to deal with multiple sclerosis that were written by me or for me therefore they are not about me. They are simply sources of information I can choose to apply to my circumstances or to ignore. The choice is mine.

You need to understand that I have a good life.  You need to understand that I have an incurable disease that limits some activities.  You also need to understand that I am not going to apologise for causing you to step aside or wait or a second or two.  If our roles were reversed I would wait for you.

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Why aren’t you doing it?

I ask again why aren’t you doing it, I am. Every Friday I wear RED in support of the individual soldiers who are out fighting wars I cannot understand. These individuals have stated that they will put their lives on the line to protect us. Wearing RED on Friday is the least we can do.

When I’m out on Friday I look carefully to see who else is wearing RED. Some days I feel proud that there are so many of us. And some days I am sad and I hope that the reason you’re not wearing RED is because you don’t know about it, not because you don’t care.

Put on a RED shirt, a RED scarf, RED shoes or RED hat and let us show the men and women of the military that we care about them. Join me this Friday and the next.

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I am one of them

There are approximately 7,121,329,380 people in the world, and I am one of them. Nearly 3,523,843,881 people on earth are women, and I’m one of them.  Less than 2% of the human population are natural redheads, and I am one of them.  Roughly 90% of the women in the world are right-handed.  I am one of them.  Approximately 35,000,000 people live in Canada and I’m one of them. More than 2.1 million people in the world are affected by MS.  I am one of them.

The reason I have taken the time to show you these statistics is because people need to understand that they are part of a group.  We are not alone.  There are actually billions of us in this great big beautiful boat we call the earth and we need to take care of it.  We spend so much time arguing over our differences that we forget to look at our similarities.  Every single person on this earth has the same colour blood I do.  We all need air to breathe and food to eat.  We all feel pain, anger, dismay and love.  We have children, we have hobbies, we have nightmares and we have dreams.  We are living longer than we did 100 years ago but I’m not sure that we are living better.  Our cultures are different, our aspirations are different and our languages are different.  But don’t you think we have more in common than we do differences?  As a species we started in the same place.  We all struggled out of the primordial sludge and over the years we developed a brain, a thought process and an attitude.  We need to put it to good use.

There is something else I want to point out.  Of the more than 7 billion people in the world there is only one me.  I am unique.  I am an original.  I am special, in exactly the same way that you are special.  Never ever again in the history of our species will you, or I, ever exist again.  Now don’t you feel significant?

Passion Versus Talent

I recently saw a picture that an acquaintance had painted and I knew at that moment that I would never paint again.  What she had painted was an image that I have had in my head for more than 30 years.  I paint recreationally.  I enjoy the process of putting paint to canvas and watching an image emerge.  This twenty-something woman had taken the image from my head and brought it to life.  And she had no idea.   Her stunning picture of an open ocean at the moment the sun breaches the horizon was breathtaking!  And I didn’t paint it!

I’ve have always believed that to have talent one must have passion.  The reverse is not always true.  One can have incredible passion and have absolutely no talent.  Seriously, you never want to see me dance!  When it comes to painting I don’t think I’m that bad.  I think my paintings are quite good.  When I say good I don’t mean in the manner of a Renoir or a Monet.  I just think as an amateur they’re not half bad.  But they are not showroom quality.  I have accepted this.  But I still enjoy painting. Yes, I will continue to paint.

As individuals we don’t have to be the best.  We only have to try our best.  And that should be good enough for us.  When we spend too much time depending on others to value us, we are doing ourselves a disservice.  Every individual has value.  It may not be in the way you think or the way you want to be worthy, but you are still important.  We all are.  I don’t need some art critic to tell me that I’m not good enough.  I am good enough for me.  And seriously, I enjoy painting.  I refuse to let my talent interfere with my passion..

This is my work. . . .

Sept 2012 007      just before    ink sketch