Category Archives: Multiple Sclerosis

A Blast from the Past

 

A Time For Change ( June 2013)
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 occassionally 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.

 

A Blast from the Past

I was looking over my posts from 2013 and thought people might enjoy this one. It is a little long but it does give a peak into my mind. (Scary place!) I didn’t make any changes.

This was posted February 5, 2013. I hope you enjoy it.

The Philosophy

I do not understand why it is considered more desirable to give up than to try harder.  It is possible you will not succeed, but you only truly fail when you don’t try. I have given in on many fronts and now I wonder if I was premature.  The doctors, nurses, physiotherapists and occupational therapists all told me it would be easier to give in and accept my situation.  I would never work again, never walk, never again be a contributing member of society. They told me I needed 24hr care. After I cried and spent some time being REALLY depressed, and then I got cranky.  I am one hell of a lot better since I stopped listening to THEM.  I am not done fighting.

What is it that makes us who we are?  What is it about one person that makes them pick up a gun and kill another?  Others have had as rough a time as them but they don’t resort to violence. What is different about the person we regard as ‘saintly’ and another as ‘a schmuck’?  I don’t believe there is a black and white answer but then that is what makes life so interesting, the not knowing.

Thousands perhaps millions have been spent on research to try and figure out the human quotient. WHY?  It doesn’t take a brain surgeon to change a light bulb so why do we insist we need an expert.  Have a little faith in yourself and give it a try.  You might throw some light on the situation.  Each and every one of us is different from the other.  Even identical twins are different in many ways.  We are ourselves. Once we figure that out the rest is icing on the cake.  We are all part of the same race: the human race.  Many of us are also a part of the rat race.  I must say some people are more a part of the rat part of that race than others but I digress. There is the foot race, the car race, the race to the end of the day, the race to get your groceries, the race. . . is a pattern developing?  Take a little time, smell the roses, loiter a bit, you might like it.

Have you ever noticed that when a stranger is dealing with someone with a disability they tend to speak louder, or assume they are not too bright, or couldn’t care about a situation?  Well I have.  Not often thankfully, but more times than is reasonable.  I have, on occasion, answered rather tersely that “I have a disability, I’m not stupid.   Don’t treat me as if I am!!”  That usually gets me a blank stare, rarely an apology.

People have to realize that I was a person before I was disabled.  Ergo, I am a person with a disability, not a disabled person.  Cars are disabled, electrical appliances are disabled, not people.  And for the record I am not CHALLENGED.  Everyone faces personal challenges.  That is simply a phrase intended to make people without disabilities appear to sympathize instead of pity.  “A rose by any other name would smell as sweet . . .” Pity by any other name is still pity, and it ain’t pretty!  I don’t need your pity I need you to treat me like a person.  HELLO, I am a person!  Stop looking at the wheelchair and heaving a quiet sigh of relief that our roles are not reversed.  Accept me for who I am, not what disease I deal with.  I want people to see me, not my wheelchair.  I AM HERE!

Okay, enough of the sermon.  I can get rather riled.  Of course you may not have notice?????

Each individual must look deep within themselves and decide what they want to do.  Okay winning a big lottery is not what I meant.  But rather, do you want to live or do you want to have a life.  The first is easy, just keep breathing.  The second is much harder if your living circumstances are compromised.  For example, you used to be a dancer, now you can’t walk.  Modify your criteria.  Write about dance, design dance studios, etc.  It won’t be easy to find something that you love, can do, and get satisfaction from.  Life is still worth living even if the playing field has changed.  Change your approach or change the field to accommodate you.  You have a lot of years invested in yourself, DO NOT GIVE UP, OR GIVE IN.  Life is for the living and there is still a lot of living to be done!

I have two feline companions.  Sometimes I look at my cats and I wonder if they are happy.  Am I off in some strange tangent?  Not really.  Are you happy?  My cats are fed, brushed, played with, cuddle, etc.  But they don’t get to experience the great outdoors.  Are they missing out on life or are they safe inside where they can live.  I don’t know.  I do know that I am not a cat.  I need the interaction with those outside my apartment, the great outdoors.  I need to be needed and I need to contribute in some way.  My cats need a clean litter box.  I need a life, preferably my own.  Now I have to find a way to get what I need.  My cats need me, but that is not enough.  I need to be important, even if it is in only a small way.  If my words, my tirade helps one person then I have contributed in a positive way.  Is my work here done?  Not by a long shot.  I have years to go before I sleep and people to pester on my route.  And I mean that in the nicest possible way.

Here is a question for the Philosopher in you.  Are we programmed to fail?  Think about it.  If a Doctor or someone in authority tells us we will fail does that presuppose that we will fail?  How about the alternative?  If a Doctor or someone in authority shows enough faith in us and encourages us to win, to overcome our difficulties, does that not then predispose us to succeed?  The power of the mind is an exceptional thing.  It is a machine (in simplest terms) that ‘programs’ our body and our behaviour.  How then do we ‘reprogram’ this marvelous tool?  I don’t know. But now that I have thought about it, I am going to find out.

Perhaps the most important thing to remember is to BELIEVE in oneself.  Let’s face it, we can’t change the facts.   We have MS (or any other really bad condition), that is self-evident.   What isn’t self-evident is how we live with it.  Yes certain realities will have to be met, the scooter, the canes, the wheelchair, etc., etc., etc.  When you wake up in the morning, make a conscious decision to smile, to live that day to the utmost.   Make the decision to LIVE not just exist.  The truth of the matter is that death is easy, living is hard.  And anything worth having is worth the effort.  Anyone who lives with a debilitating condition knows just what an effort that can be.  So concentrate on the positive.  Accentuate the positive.  You get better parking.  You have a youthful appearance. You have all your teeth/hair.  You get the idea.  It may take a little time to find the positive in your situation but it can be done, with, you guessed it, a little effort.

 

(I didn’t even fix the spelling mistake!_

 

Perception

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I recently asked a new acquaintance a rather telling question. We had never met before. We only had a few minutes to form any kind opinion about each other. He was well spoken, appeared to be quite smart and I posed a question. I asked him to respond honestly, brutally if necessary. The question was this: What was your opinion of me when you first saw me? His answer was pretty much what I expected:   “I saw a disabled woman”. I next asked him what that meant to him. His response? “You are someone who needs help in your life because you’re unable to do anything”. His Smart Factor dropped a few notches.

Unfortunately this response is pretty typical. People see the chair not the person. Once people get to know me they realize that I’m not the chair and I am not the disease. Yes, I am a woman. Yes, I have a disability. No, I am not a disabled woman. Cars are disabled, toasters are disabled. I have a disability. I also have red hair and an attitude to match. You see it all comes down to perception.

Almost instantly I had judged that man to be educated because he spoke well. Actually he is educated and attractive and I’ll say nothing more. People who live with the accoutrements of a disease run into this daily. Yes I may need help getting something off-the-shelf but don’t assume I’m infirm because I just asked you for help. This is why I have become a talker. The more I speak, the more people come to understand that I’m a woman first.

Is there an answer to this conundrum? Yes. Time. Attitudes will change but it takes time. It will also take people willing to support those changes. You cannot legislate behaviour but you can put the focus on the issue. I’m in a wheelchair, that’s really hard to miss, but I still function quite well in society. I don’t want the authorities to force people to do what is right, I want them to do it of their own accord and that takes time. It also takes people like me helping others to see, not beating them into submission. That is rather frowned upon.

 

Silence!

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They are words that are bigger than their meaning. Some words can be harsh and frightening as well as soothing even loving. It all depends on how it is said. By virtue of the inflection or the volume, even the speaker can give the meaning of the word an entirely different connotation.

Let me set up a scenario. A young child is walking through a dark and foreboding forest. She can see a light ahead and knows that she’ll be safe momentarily. And then she hears a voice and one single word. It stops her in her tracts. The word is spoken loudly by a deep guttural voice. All sound is cut off sharply the moment the word is spoken and it fills her with terror. The word? Silence!

Different scenario. Two boys are in a library and they are misbehaving. A whispered, even hissed, single word stops them in their tracks. It is spoken by a frustrated, perhaps harried retiree. The word? Silence.

And just for fun, one more scenario. A young man and his beautiful bride have just left their raucous wedding guests. They’re looking forward to their first night as husband and wife. They race for the door to their suite. They burst into their room and she falls across the bed laughing. He leans against the door panting. He looks at the beautiful woman across from him and utters one word, grinning like a Cheshire cat. That word? Silence . . .

Same word, same meaning, different implication. Don’t you just love the English language? Precise it ain’t!

 

This little foray into the wonderful world of words was inspired by Linda G Hill. And doesn’t she just inspire a lot of us. This one’s for you Linda!

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Forgetting

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I forget

What I forgot

I’m sadden

To say,

Perhaps

I’ll remember

things later

this day.

Remembering

The forgotten

Is hard

So to do,

 

I forget

What I was saying

If only

I knew.

Now here

Is a chance

To start

Once again.

 

A new day

Each dawning

Is a way

To be sane.

So forget

The forgotten

And remember

To smile

 

It’s always

The best

to stay

For awhile

The Demons are Real!

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This moment, today, right now is a very good day. I say that as if it is important because it is. I have been feeling somewhat less than wonderful for the last few weeks and today I feel great. It is difficult to explain to people how you never know what a day will hold until you are in the midst of it and even then things can change. When you have an itty, bitty incurable disease it is difficult to make plans too far in advance. You never know how you will feel in advance. A storm brewing could give me a headache which makes me weaker, which means. . . you get the idea. A small problem to most people can be quality of life threatening to me. And how do you explain to people something they have never experienced. It is like a sighted person explaining the colour yellow to someone who has never had sight.

Demons, we all have them. They are in our dreams where we are vulnerable; they are in our subconscious where they second guess our decisions. Demons are real and they live in each of us. Demons on TV are usually defeated by strength and determination. We live in the real world and our demons are undermining our determination each and every day. Controlling my demons is definitely a priority on my list.

The first step is to rid yourself of any negativity around you. If you have people near you who only see your faults, politely ask them, no tell them, to take a hike. Having a disability is hard enough without someone else telling you that you are going to fail. I know I occasionally need to be told I am doing the right thing by not giving in. I need to know that my family and friends are in my corner. I couldn’t do it without them. I am lucky there, incredibly lucky. No my demons are internal. I second guess myself; I question whether or not I am right. Is this book good enough? Will people like me for me? I guess in so many ways I am my own worst enemy. It is hard for me to believe that what I have to say will be of interest to another. It is difficult for me to believe that I am good enough, or smart enough, or pretty enough. You see what I mean? I am always afraid that I will take more than my share or that which I am not entitled to, so I often take less than I should. I am afraid of another’s perception. It is not enough to do what is right, it is also important to be perceived as doing what is right. Sometimes it is difficult to convince myself that I am doing what I should. BUT DAMN IT I AM CUTE!

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