Tag Archives: MS

Lip Service

Now for those of you who know me, this is a warning. I guess basically it’s a warning for everybody. I’m about to have a little rant. Something has recently been brought to my attention again and I wish to vent. You have been warned.

I live my life from the seat of wheelchair. Again, to those of you who follow me you know this. It does not affect the person I am but it can have a great effect on my surroundings. I’m occasionally hampered by steps, by doors and by people. The steps and doors, I just look for another way or sometimes don’t do what I wanted to do. The people, that’s where life gets interesting.

As a child I was painfully shy. I didn’t speak up in class, I wouldn’t look anyone in the eye and I lived my life terrified that someone would speak to me. Obviously, I survived. In High School I joined the drama club by accident and I was given tools to help me deal with my insecurities. I grew to love inhabiting someone else’s psyche. And then this happened.

In my middle 20s I developed multiple sclerosis. As diseases go it really isn’t that awful. I was able to hide it for many years. But eventually it became obvious. The wheelchair is a dead giveaway. With assistance I am still able to continue to have a fulfilling life. Our government is wonderful at mandating that society assist with disabilities. And for the most part they do comply beautifully. But then there are the other ones.

I went to see a movie a little while ago in a very big, well known Cinema. They said they were wheelchair accessible and technically they are. And here is something I don’t think most people understand. You can be technically correct and still be oh so very wrong. My wheelchair accessed the cinema perfectly but the only spot available to park said wheelchair was so close to the screen that I couldn’t take in the whole image without moving my head. There was no one sitting anywhere near me because no one wants to sit that close to the screen.

Think of sitting in front of your TV. Now think of sitting 3 inches from the screen of your TV. Are you comfortable? When I mentioned to the manager that this was a problem and asked if there were there any other places for wheelchairs to sit, I was greeted with a shrug. You know the shrug, that raising of the shoulders to the ears that signifies “I don’t give a rat’s ass”. But because no words are exchanged it can be denied.

I did try to watch it. It was a good movie and I really wanted to see it. I had to wait for it to be on TV where I could actually see the whole screen.

I tried to call the head office (this is a really big organization) and had a hell of a time. No one was terribly interested in what I had to say. It was brought to my attention, quite forcefully, that they had passed all the laws to be fully wheelchair accessible. I asked them if they knew what it meant to be wheelchair friendly. I swear to you, I heard their shoulders go up.

I know that things are significantly better than they used to be for people with disabilities. It will never be perfect. There’ll always be someone that is unsatisfied. I am thankful that I am welcomed in so many places. But sometimes I just want to watch a bloody movie. And in some places that is too much to ask.

There is a movie house I do frequent that goes above and beyond for wheelchairs. It is privately owned by someone who cares.

This is something these big corporations don’t seem to understand: if something benefits me and my wheelchair it also benefits many others. People with canes, walkers, baby carriages. I want to live in a world that is completely inclusive. Perhaps that is only something that is possible when individuals are involved. Corporations spent too much time looking at their bottom line.

Rant completed. Thank you for your attention.

Words

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A particular pairing of letters, vowels and consonants working in tandem have such incredible power. Power to move mountains and cripple worlds. Wielded by a talented scribe words are indestructible.

But which words?

Subversive. I like that word. Subversive . . . Rebellious . . . Revolutionary. I realize these words can be used to describe negative traits in a person, but they are also the words that are used to describe heroes and forward thinkers. People who think outside the box, people who refuse to let convention limit their artistic and innovative personalities. If we all thought the same, life would stagnate. We need people who challenge our beliefs and our inherent mediocrity. Perfection is stagnant, imperfection is charming, and I am charming as hell!

When someone is placed in a situation that is different or difficult, one adapts themselves to the situation or vice versa. You don’t have to follow the ‘book’. I do not know of one book on ‘how to be a person with a disability’ that ever asked for my opinion. Ergo, it was not written for me. We are all different and that difference is our strength. The professionals in the medical field all seem to have a ‘book’ they refer to when dealing with a person with a disability. Unfortunately that ‘book’ only refers to the middle of the road and most of us are a little off on the shoulder. I have had more than a few discussions with Physiotherapists and Occupational Therapists who seem to think I fall in the same mold as everyone else. I soon convinced them otherwise. To give them credit, when they realized I was actually capable of independent thought we got along much better. Of course I still had to watch and occasionally insist. I used to be so shy. I cannot afford to be anymore.

I hate the word can’t. Can’t, can’t, can’t. Recant, Vacant. Such negative words, harsh words. Unable, incapable or even cannot is preferable. Of course can, able, or capable are even more preferable. And if you look carefully, each positive word is inside the negative one. It is amazing how words can encourage us or even discourage us. Something as simple as a sound, vowels and consonants reverberating have the power to move us. A rousing speech made by an honest Politician, (and you thought I didn’t have a sense of humour) or music, good music. Music that we think is good. It doesn’t matter what anyone else thinks. Music, like Art, is personal even visceral. It is almost impossible to explain to another why a particular piece of music, or art, moves us. It doesn’t matter, if it touches you it can be used to benefit your situation. Anything, almost anything, that makes you feel good about who you are, is something you need in your life. As long as it doesn’t harm another and it is legal. I will not condone something that is illegal. At least not openly. Shhhhhh.

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.

A Pause

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I want to stop for a moment. This is a peaceful moment. The TV is off as is the radio. The streets are silent. I feel secure in who I am and in what I am doing. I am beginning to realize that I am really enjoying the act of writing. I guess I always knew that I enjoyed it but I never felt I was good enough. The realization is that it doesn’t matter if I am any good. It doesn’t matter if anyone ever reads a word. I know I have said in the past that everyone is capable of finding something to do that they could love if they tried hard enough. At that time I really hadn’t. It is easy to tell other people what to do and often very difficult to take our own advice.

Well I guess I did end up taking my own advice, imagine that.

I know I talk about what other people are capable of if they just let themselves try. We are our own worst enemies. I know I am. Some days it is just easier to sit back and watch TV or read a book and not do those things we should. Like exercising. I did my exercises this morning . . . most of them. I caution people to continue to do things even if they are difficult. Being able to say something is difficult is better than saying something is impossible. That is another word I do not care for: impossible. I wish I could say that everything was possible. Maybe I can. Maybe it is just that one particular manner of doing something is impossible so another way will have to be found. Yes, I like that. I still go for walks I just don’t walk. And think about it, inside the word impossible is the word possible.

So . . . everything is possible, just not necessarily in the way you envisioned.

Out of every negative a little positive will fall.

If only . . .

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Do you ever do that? Do you ever wonder what would have happened if . . .? I try not to do it. But sometimes . . . The human mind is perhaps our greatest gift and our greatest curse. We have the ability to think, to create wondrous things. But we also have the ability to sabotage all that is good by simply worrying about it.

I have a great life. Unfortunately I am occasionally asked about what I have lost. This is not a topic I usually dwell on. For one simple reason: it is too depressing. Okay, Let’s play the game. What have I lost? At the top of the list are family members and dear friends. I weep for them but they will always live in my heart and in my memories. We have all lost those we love.

What else have I lost? I no longer have the ability to stand or walk. That sounds like such a big thing and some days it is. But I get around from the seat of my wheelchair just fine. I was watching something on the news the other day and I saw people canoeing. I was once very good at that. Made me think nostalgically of the trips I’ve taken. I’ve been rock climbing, canoeing in northern Ontario, sailing, horseback riding, swimming. sports, travelling and more. The list is extensive. I always maintained that I was here for a good time not long time but it would be nice it was a good, long time!

Well, good is what you make it! I may not ever be able to do some of the things I have done in the past but I have my memories and they’re great! I have pictures of the places I have been and I can look back and relive those times. I can. But I don’t spend my time in the past. I loved it then. But now is the time for me. I want to enjoy my life now and I will work bloody hard to see that I do!

I never want to forget my past, good and bad. Because that is what made me, me. All the experiences I have had, all the people I have met, all of it went towards making me the person I am today. And I like who I am. Do I wish that things had progressed differently? Sure. But they didn’t and this is my life and I will cherish it with every breath I breathe, cuz this is all I got and it ain’t bad!

It’s a Small World

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I have noticed in the last few years that my world has shrunk. Let me explain. When I was growing up my world consisted of the school grounds, the neighbourhood playground, the surrounding forest and of course my home. As I grew older we moved around a bit and my world enlarged. There was the local mall, friends in other towns, vacations, University, the working world. My world grew as I grew. I became aware of other parts of the country. I vacationed in several different provinces, even a few other countries. I may not have been ‘world traveled’ but I wasn’t completely inexperienced either. Lately I have noticed that my sights have turned in somewhat. My concerns are for the area immediately in my vicinity. I worry about my home, the sidewalks outside my apartment, the doctor’s office. These places are all within about a mile of my home. One mile. Once the world was mine for the taking (figuratively speaking). Now I am concerned about only my backyard. I guess that is what happens when your world is turned upside down by a crisis.

That sounds so melodramatic: a crisis. A predicament sounds a little too tame. This disease has made so many changes in my life, sometimes without my noticing.

And The Experts Say . . .

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I always like to hear what the experts say because it makes me feel safe. I feel as if there is someone out there who actually knows what he or she is doing and while I may not understand what “they” are talking about, “they” do. At least I hope they do. When I see a picture of a scientist who is working on the conundrum that is multiple sclerosis I believe, I have faith, that someone who is skilled in an area that I cannot fathom, has the same goal as I do. I want a cure to this disease. I want a cure for myself and for the hundreds of thousands of people around this world. MS has been good for me in a very bizarre way but I want to be normal. I do not want to have to plan my day around my fatigue. I want to get out of my wheelchair. I want . . . I’m I woman, of course I WANT!

I was reading a MS Newsletter recently and I saw a picture of a Doctor who is researching the fatigue element of MS. I saw the face but I also saw something else. It is said that we will see what we want to see, change the illusion to correspond to what we need. I saw hope. I saw determination. I saw a cure. Am I seeing what I want to see? You betcha! I am also seeing through faith. You see I have faith. I believe without a doubt that a cure will be found and it will be through the determination of people like that Doctor I saw in the newsletter. It will also be through the determination of people like me and people like you who WILL NOT let this disease destroy us. We can be and we will be as strong as we have to be to survive and to strengthen our bodies and our minds. I am proud to be who I am today and I will be proud to stand before the world in the future and to shout the words “I am healed”. One day I will.

Daily Quip

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Having MS is like a boat with its anchor in the water. We’ll get there eventually but we may be a little late!

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!

Disappointments

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We all have to deal with disappointments in our lives, it is just part of the journey. What is important is how you deal with that disappointment. It can be as minor as a missed TV show or as major as a physical setback. Battling a disease, by definition, sets you up for disappointments. I know, I found it very difficult to accept that I was not going to back to work. That disappointment forced me to rethink how I value myself. How I can contribute to society? Not an easy task. I deal with a great many disappointments, some relating to my MS and some relating to other people. When someone makes a promise to you, you expect it to be fulfilled. Sometimes, due to extenuating circumstances, the promise is broken. It is hard not to place some blame on the individual, even though they are not at fault. Stuff happens, not all of it under our control. That is when you have to just accept the loss, the change, whatever and focus on what is of benefit to you.

I do not know if I can overcome this disease. I do not know if I have the strength to continue to fight it. Some days I ask myself why I am struggling so hard. Those are the days I lose sight of what I am struggling for. I am struggling for you. I am struggling for the person who believes they are the only one feeling the way they do, thinking the way they do. I am struggling to make sure that everyone who has a difficulty to overcome, a struggle to conquer, knows that there are others out there who have the same questions, the same fears that they do. I am not alone. You are not alone.

Every individual has a superpower. We have the power to improve ourselves and those we touch. I know this sounds like fantasy or fiction but it is real. The simple act of treating another with respect can improve their day. A genuine smile can lift someone’s spirit. There are 7 billion of us on this small blue planet. We are never alone. Each moment, each second we spend in the company of others provides us with an opportunity to use our superpowers. Be kind to each other and pass it on.