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.
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.
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!
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.
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.
Having MS is like a boat with its anchor in the water. We’ll get there eventually but we may be a little late!
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!
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.
We live in a world of fast cars, fast food and fast computes. Hurry up,
faster, faster. deadlines. time is money, early bird catches the worm. Is it any wonder we seem to be programmed from infancy to see the world at 100kms an hour? It’s too bad, we miss so much. I have MS and it has forced me to slow down. So I guess you could say that this is another benefit of this disease. See, I told you, if you look hard enough you can find a benefit to almost anything.
Children seem to understand the concept of going at full steam and then slowing down and even stopping for a time. Many adults have forgotten how to slow down. They work hard to amass ‘stuff’, and they play hard to counter the effects of working hard. There is the mortgage to pay, the groceries to get, the laundry, the garden, the kids’ hockey, baseball, saving for college, deadlines at the office . . . the list is never ending. Before you know it a decade or two has passed and you don’t remember the ‘90s. Oops. Many experts agree that if you slow down you will live longer. Like a battery, our bodies need time to recharge. Four hours of sleep at night is not enough. Besides it isn’t just our bodies that need to recharge, it is also our minds and our spirits. I do not mean to imply that we all need to quit work and move to a deserted island somewhere. Actually, we also need stimulation. Work can provide that. We need to feel useful. A family and it’s responsibilities can provide that. What we need is to find the optimal balance. There is a time to stop and smell the roses and there is a time to work overtime. Balance. Easy to say, tough to do.
MS is a way to impose balance. Or at least it forces us to strive for a balance. And don’t misunderstand, it is tough. How do you stop functioning at your chosen career after 20 years? How do you give up something you love, like dancing, because your legs won’t work? It is damn hard! And finding a balance between expending energy and conserving energy is just half the battle. Self satisfaction is vital. We usually judge the worth of someone by their accomplishments, their work. If you no longer work how will you be judged? Do you really care? Many of us judge ourselves using the same criteria.
A person’s feelings of self-worth must now be based on something more valuable than work. Are you a contributing member of the global village? Do you strive to improve yourself and others? Are you allowing this itty bitty disease to control you or are you embracing it and forcing it to conform to your lifestyle. Multiple sclerosis does not define who I am it is merely one part of the definition. Like the fact that I have red hair and that I am right handed. Yes I have a disease that limits my lifestyle in many ways but it does not control who I am. I will survive this time of hardship in my life. And like all speed bumps I will get over it and continue on my journey. Life is a wondrous voyage and a risk worth taking.
Having MS is like a boat with its anchor in the water. We’ll get there eventually but we may be a little late!