What scary lurks behind these doors?
Do you have the courage to look?
There are goblins and dragons
and werewolves galore
they are walking the streets
and nearing my door
the witches are pounding
they want to get in
the dragons are puffing
and huffing to win
the sound is a terror
the zombies are moaning
so scary to see
the Devils are groaning
there’s evil afoot
every year it’s the same
the crazies come out
for one night of fame
I huddle and cower
my heart in my mouth
they’ll bite me I fear
unless I go south
Perhaps there’s a way
to get what I want
I’ll scare them myself
I’ll do the haunt
So scary I’ll be
just watch me evoke
I’ll teach them a lesson
the bitch, don’t provoke
Ah yes, we all love those loopholes that allow us to get out of doing things we really do not want to do. Examples are rampant in our highly technical, morally questionable, honourably deficient society. I recently tried to get into a local shop, a nice store I would have enjoyed browsing through their products. Unfortunately their front door is only 27” wide. My wheelchair, with the added pouch on the side, is 27” wide. Do you see the problem?
By law, all stores built or modified in the last few years must have an entrance that is 33” wide. This is to provide suitable access for wheelchairs. Yeah right! The law may say 33” but they don’t really mean it. Actually the law states that there must be A door that is 33” wide, not necessarily the front door. In the case of the store I wanted to get into, their side door meets the code but there is a wee problem. That door is accessed from a lobby that is first reached through a very heavy front door. Then because space is at a premium they pile ‘stuff’ around the entrance that is now impassable. I was forced to call for assistance to even get into the store. Then to make matters worse the entire store had aisles about 24” wide because of more ‘stuff’ on the floor. AAAGGGGHHHH!
I realize that I am in the minority. I realize that the main goal in some people’s lives is the acquisition of sizable amounts of currency. Having to accommodate a small minority of people who really don’t complain all that much, is a bother. So people usually don’t change unless they are forced to. And who is going to do the forcing? There isn’t anyone. One voice is not all that intimidating when there is nothing to back it up.
There are groups out there who say that they are advocates for those with disabilities, and they are, for the big things. But who is there to fight for the individual with what amounts to a minor problem? I haven’t found anyone. Those agencies I have approached have always said that their concern is the big picture. Well this is a wake-up call. I am part of that ‘big picture’ which is made up of a whole lot of ‘little pictures’, a mosaic if you like. It is the ‘little pictures’ that will form the foundation for the ‘big picture’.
Let me restate that. If you ignore what is happening to the individual and focus only on the laws and by-laws to change peoples’ attitudes then you will fail. You cannot force someone to do what is right, after the fact. They will spend a sizable amount of time and money to find the loopholes that will allow them to circumvent the law, legally. If you instill a sense of pride in doing the right thing early on, then you will have people who will offer to do what is right without it being forced down their throats. That is something to encourage.
TONIGHT I LAY MY HEAD TO REST
TROUBLES HEAVY ON MY CHEST
HEADACHES FROM A FURROWED BROW
ESCAPE I WOULD IF I KNEW HOW.
INTO MY LIFE A CHANGE DOES COME
A WONDROUS BEAST WHO LOVES TO RUN
HE CHASES TROUBLES WITHOUT A CARE
AND RENDS THE WORRIES I WOULD NOT DARE.
WHO IS THIS GOLDEN BEAST OF POWERS
WHOSE STRENGTH OF LIFE ABOVE US TOWERS
TO ME HE GIVES THE GIFT OF PEACE
AND ON LIFE ANOTHER LEASE.
THIS IS MY WOODEN ROCKING HORSE
A MAGICAL BEAST HE IS OF COURSE
HE CARES FOR ME WHILE I DO REST
AND IN THE MORNING ALL IS BEST.
HIS FIERY MANE DOES WHIP AND FLY
HIS LEGS STRIKE OUT AND TROUBLES DIE
A BACK SO WIDE AND STRONG HAS HE
I’LL NEVER WORRY AGAIN, NOT ME.
Recently I went to an event that was honoring someone. There were many people there that I knew and quite a few that I did not. I was introduced to a woman by a mutual friend and she, by her mere presence, made me start to think.
She was an attractive woman beautifully dressed. The one item that she wore that made me think was her scarf. It was a beautiful decorative scarf of blue and white and pink. She noticed my interest and we started a conversation.
Did you know that scarves have been around since the time of the ancient Romans? Originally they were worn by men and used to wipe the sweat from their brow. Like so many things through the ages women eventually figured it out and perfected the wearing of the scarves.
Scarves are incredibly versatile. They can elevate an outfit from good to great. They can wipe a sweaty brow or dab at tears. They come in all shapes and sizes and materials. Fighter pilots used to wear silk scarves to keep their necks warm while they were flying above the war. Scarves made of wool are very popular if you live in cold climates. A good size scarf can be used to swaddle an infant in a pinch. They can be used to stop the flow of blood or as a handy garrote should the need arise. There was a time when women everywhere wore scarves. Now it appears to be quite rare. Men wear mostly ties now instead of scarves but that is how it all began.
When I was working I wore a scarf almost every day, it was the finishing touch to my outfit. Now I usually wear pashminas. Yes they keep my neck warm and yes they are decorative. But mostly they’re just really cool!
This is something a little different, I hope you enjoy it.
Lea looked around her and smiled. Life was good. She felt as if she was on top of the world. Which in fact, was not too far from the truth. She was high enough to look down on the teeming masses and feel superior.
A gentle breeze moved around her and she shivered in delight. With the sun on her face and the faintest wafts of air to keep the bugs at bay there was no other place Lea would have preferred to be. Here she could while away the days in thought and feeling. The whole experience was a hedonistic surplus of sensation.
It is dangerous to spend all of one’s time in the near sighted pursuit of just one ideal. With the passage of time comes change.
Lea woke one morning to a strange feeling of fear. She really didn’t understand the sensation but she was sure she didn’t like it. Carefully she glanced around her. Everything seemed unchanged. The people she could see were scurrying about their daily lives. The sun was in the sky, the wind was quiet but still there. It had rained over the last few days but that was not unusual and it even made the world seem a little crisper, more alive. But something was different.
Lea didn’t live in her little aerie alone, she had neighbours. When she finally deigned to actually acknowledge them, she discovered that they had changed. Perhaps they had spent too much time in the sun because they were definitely a different colour. Not an unpleasant shade of red but it did depend on your tastes. Once again Lea felt superior. She wasn’t going to change, not her.
There are few certainties in life, death and taxes not withstanding. The passage of time can never be halted no matter how much we may want it and with that passage also comes change. We can rail against it all we want but change happens.
It had been a few weeks since Lea had first noticed the changes in her neighbours and she was horrified to see that they seemed to have accepted it. It must be because they were old, past their prime. Not like her. Although, in the last few weeks she had been feeling a little tired, not her usual perky self. It must be the weather. The wind was blowing a little harder and the sun wasn’t nearly as warm as it had been. Lea was sure that it would all pass and that one day soon everything would be back to normal. It had to, she wouldn’t accept anything else.
The next day Lea woke feeling cold and sore. She looked to her neighbours and saw that they were gone. She made the effort to look around her and noticed that all of her neighbours had gone. She was alone. The people below were fewer and those she could see were not enjoying the day like they used to, they seemed to be in a hurry. It is hard to feel sanctimonious when you are alone.
A few days later Lea did not wake up. The wind was blowing hard and crisp. The sun seemed lower in the sky, almost as if it too was finding it difficult to rise in the morning. The warm days of summer had come to an end and the cool winds of change had brought the autumn. With her many neighbours Lea now formed a blanket of leaves beneath her cherished trees. The seasons changed once more.
According to the Free Dictionary on the Internet there are five definitions to attitude:
1. A position of the body or manner of carrying oneself
2. a. A state of mind or feeling; disposition
b. An arrogant or hostile state of mind or disposition
3. The orientation of an aircraft’s axis relative to a reference line or plane
4. The orientation of a spacecraft relative to its direction of motion
5. A position similar to an arabesque in which a ballet dancer stands on one leg with the other raised either in front or in back and bent at the knee
For the sake of this post I am only concerned with definitions one and two. We all have attitude. It’s what allows us to make it through the day in one piece. Not all attitude is negative and yet when we use that word we are usually referring to someone with bad attitude. Attitude is a word that describes a disposition. It is not a negative or positive, it just is.
Definitions three, four and five refer to attitude as a position in relation to the world around the main item. I would like to posit that one’s psychological attitude is directly related to one’s physical attitude. That actually makes sense if you think about.
The way we deal with the world is in part how we were raised, how others interact with us and how we feel on any given day. On a day when I feel miserable you can bet that my attitude is going to be bad. But on a day when everything is going well my attitude is going to be positive and cooperative.
We use attitude to describe behaviors that we may find distasteful. Is it an accurate way to describe people? Probably not but we describe people based on our own background. We can use the physicality but that only gets you so far. We are so much more than what you see. People are multifaceted, like those Russian nesting dolls there’s more under the next layer.
Here’s a subversive idea for you: people are all the same. We all started in the same place: the primordial sludge and we will all end up in the same place: dust in the wind. Everything else is cosmetic. Physically anyway. The real value is in the kind of person we are. Nice guy versus schmuck. Victim versus tyrant. And what is it that makes one person caring and open and another self centered and cruel? Who knows? What makes one person a savant and another an idiot? Luck of the draw? Why does one person get a disease and another go through life unscathed? You can spend your entire life asking questions that have no answer or you can change the equation. Concentrate on the little picture: you. The big picture is made up of a lot of little pictures. We need to focus on what we can accomplish, on how we live our lives. Do we care about others and try to contribute to the greater good or do we simply exist and only take? We do have it in our power to decide. True immortality is achieved through the memories of others.
Like a flash the heat is on
a warming from within
500° emanating from just one
calculate now over millions.
Women of an age know
that they can heat the world
standing together oceans apart
a biological marvel.
Many years ago
life expectancy was short
and the world was a cooler place
a gentler, quieter time.
Good food, good health
men live awhile
women live longer.
A dangerous match was lit
and the internal clock
turned on the furnace.
Ladies start your engines.
Managing is a learned skill and I have learned that it is better if you appreciate that lesson early. One must learn to manage time, manage energy, manage fatigue and to manage our own emotions. How we feel can and does have a very profound effect on our lives and in particular any disease we may be dealing with. I find I am usually in much better shape when the sun shines and I am warm. Silly perhaps but I never said multiple sclerosis was logical.
Some days I simply MUST buy something. Or perhaps I just feel like going for a walk down to the lake. I refuse to run my life like a business with deadlines and responsibilities. We have enough responsibilities in our lives without creating more.
Managing your fatigue or your energy levels is really quite easy. If you are tired, stop. It is that simple, lie down, put your feet up, put your head down on your desk, just stop. People have to understand how important this is and make allowances for you and you have to stop being strong and toughing it out. You will do yourself damage if you do not give in to the fatigue. Plan for naps or even just make a little time to put your feet up. MS in particular demands it and this I will comply with. You cannot beat it, you cannot win. Take a nap and then enjoy the rest of the day. You may only require ten minutes but if you let it go you will require more time. Fight the battles you can win and compromise on the rest.
Managing one’s behaviour is a very difficult task. I know I shouldn’t get angry when something doesn’t go the way I want it to. People will promise to do something and then are unable to because of other obligations. It isn’t fair of me to resent them. I know that intellectually, but I still get angry. I am not the only person in the world and certainly not the only one with a disability. Acting like a Prima Donna is distasteful from a distance and even more vile when you realize you are the one doing the acting! How we behave in a given situation is based on so many factors. How we were raised will dictate how we judge a situation and our response to that situation will be based in part on how we feel that day, how we have responded previously in similar circumstances, who we are with, etc.,etc.,etc. No one can say how they will respond until they are faced with that particular moment. Ten years ago I would never have believed I would have treated my present circumstances in the way in which I have. Actually ten years ago I would not have believed I would ever be in this situation. Maybe this is where I was meant to be. Maybe this is what I am meant to do. I want to be able to look back on my life and be proud that I lived a good life. I’ll tell you if it worked in fifty years or so.
THIS SILLY LITTLE DITTY
IS JUST TO MAKE A POINT
WORDS TO PROVE I’M WITTY
I REALLY MUST ANOINT
A PERSON AS MY SPEAKER
I’M SUCH A HUMBLE SOUL
THE FULLNESS OF MY BEAKER
I THINK I’VE HIT MY GOAL
IF THINGS WERE ANY BETTER
I COULDN’T STAND MYSELF
PERHAPS I NEED A FETTER
TO KEEP ME ON A SHELF
SO I END THIS LITTLE RAMBLE
THROUGH PHRASES SO DIVINE
NEVER ONE TO GAMBLE
GOODBYE JUST SUITS ME FINE.
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Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
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