Monthly Archives: September 2013

To fear or not to fear, that is the question ….

It is quite natural to have a certain amount of fear in your life. Actually it is quite beneficial, even necessary. Fear can keep us from doing really stupid things, like stepping over a cliff edge or driving our car into a ravine. We know what will happen if we do and that is frightening. There is a negative side to fear. It can cripple us from living our lives as fully as we should. How many people have not spoken to someone that they are attracted to because of fear of rejection? How many people are absolutely paralyzed by the fear of speaking in public? How many people are terrified to show their work be it paintings or poetry because they are afraid others will find it less than stellar?

For those of us who are dealing with an incurable disease there is another kind of fear, the fear of the unknown. You know what the books say your disease can do, and it can do it to you. Yes that is frightening. Yes that kind of fear can paralyze a person. And yes there is a way around it. I believe that the mind is an incredible tool at our disposal. Well, use that tool. Tell yourself a hundred times a day “I feel better and better in every way!”. You can convince yourself if you believe. Can you cure your disease? Probably not, but stranger things have happened. What will happen is that you will start out by forcibly holding your head up and talking yourself into believing and one day you will find that you do truly believe. For truly blessed are those who can believe. Proof is a wondrous thing but proof is often open to interpretation.

You are probably afraid you will have to give up work. That might happen. You are probably afraid you will end up in a wheelchair. That could happen. You are probably afraid . . . . well it doesn’t matter. You are the only one who knows what frightens you the most. It could happen. It might happen. These are possibilities only, not probabilities. Remember that. As for certainties . . . it is certain you will need to sleep, and to eat, and to . . . well, you get the picture. Why worry about things you have little control over and that may never happen. You know what makes you feel better and what makes you feel worse. You have some control, use it. Don’t spend the next fifty years moaning about ‘what if’s and ‘could have’s. You have a life now, enjoy it.

Face your fears. Easier said than done but I challenge you to take your fear out for a run. If you are afraid to speak to that special someone, then write yourself a little speech, memorize it and then stand in front of this person that frightens you and say the words. If you are afraid to stand up in public then find someplace where you can do just that, speak. There is nothing more liberating than conquering a fear. Be well. Be happy. Be fearless!

A HOLLOW CRY

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THE PASSING OF TIME

A HOLLOW CRY IN THE DARKNESS

BIRDS TAKE FLIGHT IN FEAR

MAN REFUSES TO BELIEVE.

POWER TO CHANGE AT A WHIM

THE ARROGANCE OF THE SPECIES

BUT STILL THE TUNNEL BECKONS

TO ALL THERE IS AN END.

OUR TIME TO STAY IS FINITE

THE PASSAGE DUES ARE HIGH

AND YET WE SEEK AN ANSWER

AN OPENING, AN ESCAPE.

JUDGE YOUR TIME HERE CAREFULLY

AND SEEK THOSE SPECIAL DREAMS

FALTER NOT, BUT STRIVE AHEAD

THE CLOUDS WE FLEE ARE NEAR.

A funny thing happened on the way to my life

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Recently I was quietly working away at my computer, diligently delving into something important. I don’t remember what it was. But I had a sudden urge that forced me away from my computer and my oh so important work and into the kitchen. It was at that moment surrounded by my refrigerator and my stove that I suddenly wondered why I was there! Fortunately I was all alone and my stupidity was not apparent to anyone else other than my cat. However I’m sharing it with you for one very important reason: it is happening to us all!

My mother referred to her momentary lapses of memory as her Senior Moments. My mother was entitled, she had been around for 89 years! That’s a whole lot of stuff to remember! I don’t have quite as much stuff oozing around my brain. I have not lived through a depression or a world war. I haven’t raised three children and saw the evolution of technology. But I still think I’ve got lots of stuff to remember. I had a wonderful childhood, I did the university thing and college. I have traveled and I have had boyfriends. Some were good, and some were bad. That’s the traveling and the boyfriends! But I am also significantly younger than 89 years.

As I was in the kitchen trying to remember what on earth I was there for, it struck me as quite funny. Three seconds later it struck me as quite sad. Since I’m a positive person by nature I went back to the funny. I maintain that the space between our ears is finite. As we gain new memories each and every day we need to delete some of the unimportant stuff in order to make room for the new stuff. Think of it as cleaning out your closet to make room for more shoes. I like that analogy. I like shoes.

I can remember so many incidents from my childhood that there are more than a few I would be willing to forget. I would even give up some of my memories from University. Actually there are some memories from University I would like to delete from the cosmos! Okay, but it was fun! Aren’t we all in the same boat? There are things we would like to forget and things we pray that we will be able to remember for the rest of our lives. I have a wonderful memory of kissing a boy at the edge of a lake under the moon on a warm summer’s night. I am so not given up that memory!

Magical sorcerer

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A magical sorcerer lives in my head

he swims through my body

and fills me with dread

A message is sent

to my foot from my brain

the sorcerer sends orders

to my bladder to drain

It seems I can’t stand

when I want to get up

the sorcerer has plans

for breaking a cup

This disease that I have

it changes my life

it does not define me

or fill me with strife

I am who I am

no matter the name

the magic I have

is never the same

The magical sorcerer

is close every day

a battle perhaps

it does make me pay

I will not give up

I will not give in

the magical sorcerer

can simply not win

The sun and the rain

the fog and the moon

my life will go forward

it will not end soon

Life with multiple sclerosis/magical sorcerer, it is a challenge.

The Anatomy of the Truth

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People say that the truth is not black or white and that it means something different to different people. I agree with those sentiments. Police will tell you that if four different people see the same accident you will have four different eyewitness accounts. They may all have seen the same accident but they interpret what they have seen differently. How we process information is directly related to our past experiences.

When individuals deal with crisis situations they deal with it individually. If you are dealing with a disease, there are others in similar circumstances. We may have the same disease but it manifests itself differently in each case and we process and deal with that manifestation as individuals. People ask me how I deal with the pain associated with MS. I don’t have any pain. People ask how I deal with the lack of sensation associated with MS. My sensation is just fine. It is difficult for people to understand just how different this disease can be from the next person’s. And you can’t blame them. People can only understand what they are told and it is difficult to fully explain a disease that is so idiosyncratic.

It is not my job to teach people about MS. It is not my job to raise the consciousness of strangers to the problems associated with disabilities. It is only my job to explain to people honestly what I am facing and what can help me and others, in similar circumstances, if they want to know. In truth, I can’t force people to care. The average person is concerned with paying their rent or completing a project for work. I must respect that and I do. What I must also do is insure that I am not forgotten or dismissed just because I am different. People do not have to join my cause but they must respect my fight. After all, I do respect them, mostly.

SAGE THE LESSON

Oops, my straitjacket is slipping…

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Photo by John Ey, Arizona

When you look up at the stars at night do you feel homesick? Okay, okay, bad joke. Do you know once upon a time I laughed uproariously at that joke. I ran around and told all my preteen friends. Yes, it’s that old. And so am I.

As we age our funny bone seems to migrate. For some people it ends up around the nether regions. For others humour becomes more cerebral. I don’t know the equation to what’s funny. I don’t even know what makes me laugh until I am actually laughing. When was the last time you laughed so hard there were tears running down your face? Do you remember the knee slapping, rib tickling, gut wrenching guffaws you used to hear when a group of people got together to watch a comedy film? I don’t, at least not recently. The last time I had one of those all-encompassing, falling on the floor cackles was watching an old movie.

The movie was ‘Buffy the Vampire Slayer’. I don’t remember the movie. I don’t even know if it was actually a comedy. What I do remember is my boyfriend and I beating on the furniture. We were laughing so hard we were crying. I remember him falling on the floor and not able to catch his breath. But I don’t remember the movie. I remember that there was a series but it appeared to be about teenage angst (and vampire slaying) I wasn’t interested. I had enough of that when I was a teenager! (The angst not the slaying!) Don’t get me wrong I enjoy comedy. I’ve been known to crack a smile and even show teeth. I just haven’t had a really good belly laugh in a very long time.

Laughter is a universal language. It crosses borders and brings people together. It can also alienate people and cause others to commit various forms of harm. Of course that in itself can be funny! But I digress. I don’t know of any culture that doesn’t have some form of laughter. Wouldn’t it be nice if we could laugh more and shoot less? We spend so much of our time behaving according to the narrow dictates of societal decorum that when we let loose it can be epic! Find the time to laugh. A really good guffaw exercises the whole body!

WITTY DITTY

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THIS DITTY WRITING REALLY

IS JUST TO PASS THE TIME

I KNOW IT IS QUITE SILLY

THAT EVERYTHING MUST RHYME

THAT’S THE WAY I AM I GUESS

I’VE HEARD IT SAID OF ME

I HAVE MY QUIRKS I MUST CONFESS

BUT THEY’RE WHAT MAKE ME, ME

I’VE BEEN TOLD THAT I AM DRIVEN

I HOPE IT ISN’T SO

I’M JUST A PERSON, THAT’S A GIVEN

WHO KNOWS IT’S TIME TO GO.

Etiquette

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Good manners at any time and in any situation just makes good sense. Proper etiquette for wheelchairs and scooters is a must. As individuals we are ambassadors for all people with disabilities. The way in which you behave may make someone look at another in a similar situation a little differently. It could be for the worse but it could and should be for the better. First and foremost, running over another’s feet is considered very bad manners. In a crowded room it may be disregarded because of the volume of potential victims. But you really can avoid the situation if you try.

When someone approaches you with the intention of giving you a hug or a kiss may I strongly suggest you turn the power OFF if you are using a device with power. It is a little difficult to explain your sudden departure through the nearest wall when a well-wisher taps your controls. Don’t laugh, it has happened to me and the poor friend felt awful. No real damage was done but another person standing nearby did walk a little funny for a few days.

If a stranger approaches and asks if they can help you, (say you’re shopping in a store), do not take offence. This may be someone who genuinely wants to reach out to another human being and assist. If you were able-bodied and needed help, I hope someone would be there to assist you. If you do not need assistance just smile, say thank you and decline their offer. Perhaps chat for a moment or two, one human being to another. If you can use the assistance, accept it politely. The best way to educate other people on the correct way to treat someone with a disability is to be pleasant. You can be quite self sufficient while graciously accepting assistance when necessary.

When a child approaches and asks why you are in a chair, be kind. This young child could one day grow up to cure the world of some dreaded disease. Be aware that what you say could be forgotten in an instant or remember for a lifetime. TELL THE TRUTH. I have never believed in telling lies because it is easier. However giving a six year the specialized ramifications of an exacerbation doesn’t make much sense either. I have had several conversations with children and by extension their parents. They usually went something like this:

child: why are you in that chair?

me: because my legs don’t work very well

child: why?

me: because I got sick and my legs got weak

child: does it hurt?

me: no. I just sit down a lot

I find a smile and a genuine interest usually appeases the child and the parent. The parent at this point is often trying to drag Suzy or Joey away while apologizing to me. I tell them that I welcome the honesty of a child’s questions. And I do. Adults are either afraid to ask so they don’t look you in the eye or they are ghoulishly trying to get ‘the dirt’ so they can gossip later. Occasionally you do meet people who don’t care about the chair or the disability. Those are the people I prefer.

How do you deal with those people who condescend and discriminate? Well, toe squashing is an option but that is bad etiquette. You can explain succinctly that their behaviour is not appropriate or my personal favourite: loudly inform them that you have a disability, you are not stupid and they should stop treating you as if you are. That does get a few looks. And yes, I do feel a certain amount of satisfaction. Of course it is necessary to know your audience. Some people are dense enough that they will not understand what you are saying. Some people just need a gentle nudge; they don’t realize they are treating you inappropriately. Take the time to understand them before you respond. Most people are not malicious, just ignorant.

Finally, stop thinking of yourself as a disabled person. Think of yourself as a person. Hold your head up in public and be proud of who you are. Show confidence to the world. People will respond to how you treat them. If someone condescends to you, explain how that behaviour is unacceptable. Do it pleasantly and with respect. Now who is behaving appropriately? If you go out into the world with a smile on your face and in your heart you will meet pleasant people. If you are miserable you will find just that. Life is too short to be miserable.