Too Tired

I have been too tired to write.

There have been bladder infections and antibiotics

that made me too tired to write.

Lots of water, cranberry juice and I stopped drinking coffee.

I have been too tired to write…

Too many trips to the bathroom

made me too tired to write.

How to explain…

when getting up in the morning is opening your eyes to realize

that getting out of bed is more like a grand haul.

So, I have been too tired to write.

A trip to the bathroom is more like an expedition

and the shower? Having a shower…

becomes the event of the day.

I have been too tired to write.

Now, let me admit

that I have been too distracted to write.

When simple tasks become arduous, sitting in my wheelchair and catching an episode of my favourite show is fun I deserve.

Have you caught podcasts? There are so many out there. They are much fun to listen to and I can play them all the time. Having other people’s words fill my head distracts me from the arduous peculiarities of life.

And, when I have energy for something, I choose to work on the podcast that I like to call ‘a little spiritual hour’ on the Internet. From The Healing and Cancer Foundation take a look at one of our podcasts.

I have been too distracted to write. Here’s another one of my distractions.

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Allow me to introduce you to my grandmother.

I think of her often these days. I recently saw a picture of myself that immediately brought her to mind. I am sitting in a wheelchair with my knees resting against each other. I am smiling and enjoying the company around me on a very social evening. What made me think of my grandmother? Even when she was in her 90s and used a wheelchair to get around, she was always ready to enjoy herself. With her pretty, high cheekbones and mischievous eyes, she was patient and clever. She taught me a lot. How to cook a good spaghetti sauce. How to be grateful for the small things in life. How to appreciate poetry.

I knew her for a long time, from the time I was born until she passed away when I was in my 30s. At different stages in my life, I got to know different sides of her. A charming, mischievous and open-minded artist, she worked very hard. She was unassuming, but expected nothing less than excellence. She loved and forgave. As I watched her age and grow more frail, while I grew stronger, I learned that the physical reality of her presence did not reflect the essence of who she was.

I remember when we were living in Ontario in the 1970s, she and my grandfather were taking English as a second language classes. She showed me an essay she had written for the class. She explained she had to choose a topic from a few the teacher had given. She chose to answer the following: “Is it better to have loved and lost, than never have loved at all?” I was young and remember reading the paragraph, but not quite understanding it. She explained to me that it was better to have loved and lost. I remember looking at her wide-eyed, thinking to myself: “Si Nonna, if you write it, then it must be true.” I think back now of all the stories she told me and realize I had absorbed this: there will be pain, frustration and discomfort in life; joy is mine to find.

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Learning to stand

I visit the physiotherapist once a month. She tugs and manipulates my feet and legs to get my body to do the things it can’t do on its own. I learn to pay attention to different muscles and their abilities to help me do simple things, like stand. I had no idea how many muscles are involved in standing or in balancing on 2 feet.

These are the steps I take to go from sitting to standing. Perched on the edge of a chair, my knees  forward, placed further out than my toes. I aim my nose over my knees, straighten my back and propel myself forward and up. I am doing the mid-air stretch. I flatten my back and push myself to standing. My torso is out and up. I engage my abdominal muscles. Who knew they were so strong?  Those abdominals! A little closer to standing, at this point I engage the gluteus. A big muscle group, squeezing those cheeks together allows me to stand a little taller. Later, while doing physiotherapy exercises, I discover muscles in the small of my back. Guess what!? There are muscles in my back, that can also be employed in helping me stand, sit up straight and simply enjoy the wonder of my own body.

Next, comes the brain. It’s a lot to take in. There are many commands to send forth to various limbs. This can be tiring for my MS body. My brain has to believe that it can. I have to be okay with it being different and difficult. But that doesn’t mean I can’t, it just means I have to learn how to do it differently. And I’m learning how to do things differently again and again and again.

Imagination Is Power

Things are not as they appear. I am not sitting on a wheelchair, but a throne. The dining-room table is a gathering place and that futon couch, when open is a big flat yoga mat. And so, I park my Power Chair by that flat futon and grab my walker. I pull myself up and do some standing exercises. Seated on the edge of the futon, I’m ready to go down and the music starts. Grabbing my left leg, I roll backwards as if going on a dive with an oxygen tank on my back. I am diving off the side of a boat, while The Clash Rocks the Casbah. Music is a part of my yoga routine and I play it loud. On my back and knees up, the flat of my feet pressing down on the futon. Waves of Hey Rosetta splash over me. Swinging knees to the left, I loosen my lower spine. Swing knees to the right and breathe in deep with Jenn Grant.  Pull one knee into my chest and extend the other. Switch to The Weakerthans. When Billy Bragg calls, I’ll stretch my arms long over my head and stretch my toes in the opposite direction.  And wish I had a river to skate away on as I turn onto my stomach and stretch again. Rest my head on my hands, I breathe in and exhale. I smile with pleasure, because movement mixed with music is like swimming.  Position myself in a cobra, while ‘The Decemberists sing to make me better. Lie flat and breathe deeply, as if floating downstream, because Tomorrow Never Knows.

Photo credit: A detail of a cathedral, Il Duomo in Milan, Italy, taken by Rita Kindl Myers (1993).

Blogging is fun.

This blog has been nominated for a Liebster Award. How fun is that?! Thank you Kim Scaravelli for the nomination. She writes a blog that I really enjoy and highly recommend. It’s called: STUFF MY DOG TAUGHT ME. Find it at: http://stuffmydogtaughtme.com/
Here comes the fun part. Anyone nominated for the award, then chooses 5 to 11 other blogs to nominate for this award, specifically blogs with fewer than 200 followers. Sounds like a chain letter? Sure, but the result is that I’m discovering other people’s blogs. They may read mine. You may discover blogs you may not have heard of.   To add a little more fun to the mix, all nominees must answer 11 questions posed by she who nominated them. And, then create questions to ask the people they have nominated.

The Liebster Rules are the following:

  1. Thank and link back to your nominator
  2. Answer the nominator’s 11 questions
  3. Nominate 11 other bloggers with 200 or fewer followers and link to them
  4. Draft 11 new questions for your nominees
  5. Notify your nominees via their blogs or social media

Here are my answers to Kim’s 11 questions.

  1. If you were a tree, what kind of tree would you be? (I have always wanted to ask that question I love trees and have always identified with them. If I had to be a plant, I would choose to be a tree. An oak, because of the many qualities of their wood. It is a dark, beautifully grained hardwood.  
  2. You are on a desert island and can have only one food. You will never run out but that is all you will ever eat… for the rest of your life. What food do you choose and why?  The answer has to be avocado. Think about it. I can eat it. I can rub it over the skin of my face and then use the sand on the beach to exfoliate. I would give myself a little bit of a spa. After I scoop out the insides to eat them, I can float the skins like little boats and have fun watching them float in the water. I could take out the pit, clean it and carve a message on its surface. Then throw it into the sea and hope someone will read it. I could use the pit with a slingshot to kill small mammals, birds or crustaceans for food. The avocado is awesome.
  3. You have lots of time and no one else wants in the bathroom. Do you choose to take a shower or do you choose a bath?  Shower, I would definitely shower. Why? People with MS don’t like baths. I overheat in a bath and then move around like someone who’s had too much alcohol. Boring!
  4. In your “dream home” what is the biggest room? I’m going to say kitchen. Why?  because I like kitchen parties. I like parties that end up in the kitchen. I like having people over and cooking together and eating together. 
  5. You are on a plane. The person beside you wants to engage in conversation but you would rather just watch bad television and eat your tasteless, pre-packaged chicken wrap. How do you resolve this?  I would talk to the person for a little bit and then decide whether I’m going to get a terrible headache by continuing. You never know, I might enjoy the conversation after all and hear a good story. If it looks like I’m going to get a headache, I’d shut my eyes, excuse myself, put on headphones and listen to the radio.
  6. Who is your favourite cartoon dog and why?  it has to be Snoopy created by Charles M. Schultz. He’s a dog with character, who was both a flying ace and a writer. Sometimes, he was just smarter than the rest of them. 
  7. You have been trapped in a Karaoke situation. There is no way out. What song do you sing? I will sing “I can see clearly now” and sing the version by Holly Cole.
  8. You are in a clothing store. You have enough money to purchase one “PERFECT” sweater. Beside this item is a sale rack where you find three “NICE” sweaters that can all be bought for the same amount of money. What do you choose to do and why?  I would buy the perfect sweater. I have enough sweaters, so I don’t need 3 more, but finding the perfect sweater sounds nice.
  9. You have a chance to rewrite history and change your name to anything you like… What do you call yourself?  Okay, this is only going to prove me boring. My answer is: Rita. But, please pronounce the T (do not pretend it is a ‘d’).
  10. Too cold or too hot? If you had to pick one, which would it be and why?  Cold is the answer. Please refer to question number three. Besides, coming from Canada, I like the cold and I’m spoiled with ‘central heating.’ I can always warm myself up, I’m lucky enough to have a home. 
  11. The television has broken and there is not a book to be found (what a horrifying thought!). It is a stormy day and you are trapped in your house. How do you amuse yourself for the day?  I want to answer with the Internet. But I realize if my TV is broken then I’m going to assume the modem is broken that would be the equivalent. What would I do? Play a boardgame. My first choice is scrabble and then Settlers of Catan. And if the kids refuse to play with me, (why else would did I have kids, but to play board games with) I would listen to music.

And now, I would like to nominate the following well written, entertaining and informative blogs for the Liebster award:

1. Canadian Seaturtle Network, written by Kathleen Martin

https://canadaseaturtle.wordpress.com/2015/02/05/transmission-trouble/

2. Words about Writing, Mental Health and other fancy stuff by Anna Quon

https://annaquon.wordpress.com/2015/01/05/year-of-the-lollipop/

3. Tales from the sea,

https://seabell.wordpress.com/2015/02/05/old-pictures/

4. Stephanie Domet, writer at large

http://stephaniedomet.com/2015/01/28/bonkers/

5. The intent of choice

https://intentofchoice.wordpress.com/2015/02/11/i-followed-the-instructionswhy-have-i-not-found-peace/

6. Pizindian https://pizindan.wordpress.com/2013/10/18/pipeline-to-prison/

7. A blog about music Jambalaya http://thejambalaya.com/2015/02/01/a-visit-to-the-old-triangle/

8. The Peel watershed legal case

https://peelwatershedtrial.wordpress.com/2015/01/05/the-fight-for-the-peel-watershed-continues/

9. Elizabeth “Tshaukuesh” Penashue: Innu Elder and Activist

http://elizabethpenashue.blogspot.ca/search?updated-min=2012-01-01T00:00:00-04:00&updated-max=2013-01-01T00:00:00-04:00&max-results=5

10. Open-heart farming by Mary Ellen Sullivan

 http://maryellensullivanblog.tumblr.com/

As part of the award, the nominees are invited to answer my 11 questions. Here they are:

  1.  What is your favourite colour?
  2. Snowshoe, ski or skate, which do you prefer?
  3. You have a time machine and you can time travel to any date. Do you choose to go to the future or the past?
  4. Pie or cake? Which do you prefer?
  5. You are suddenly dropped in a land where you do not speak the language. You are allowed to take one item to share with the locals in effort to get to know them and learn their language. What do you take?
  6. You have been given the choice of speaking another language, but it has to be the language of an animal. What animal do you choose to communicate with?
  7. You are given the opportunity to go anywhere once a year for your vacation, but you will be 10 cm tall. Who do you choose to travel with and where?
  8. You have the choice of preparing all your food by yourself or taking a pill for all your nutrients. Which do you choose to do? This was my father’s great idea and I always argued against it. What do you think?
  9. I’m bored. Will you sing me a song? What song can you sing for me?

Did I just say that?

My daughter and I were getting ready to go to a concert. We had eaten a quick supper and she asked, “how do you want to get there?” It had been a mild December, so we could walk. But it was already dark. I haven’t yet ridden my Power Chair on sidewalks at night. “We can call a cab,” I decided. A company in town was offering wheelchair accessible taxis. “I can ride my Power Chair and hop right into the back of the cab,” I explained. For some reason, I was feeling tired and uneasy about going out. Looking to my right I saw my walker and said, “I miss those Walker Days.” I caught my daughter’s gaze as she suppressed a frown. I admitted, “I can’t believe I just said that!”

What was I saying? What could I possibly be missing?

Previously, I would drive, lifting the walker to place it behind the driver’s seat. Parking at a handicapped spot close to the entrance meant I could take out my walker and slowly make my way to the theater. Usually visiting the bathroom before the show started and then taking my seat. There was a time when this was do-able. When these activities involved a little bit of duress. Just enough struggle, but not so much to tire me out. I live with struggle. These days getting up from bed can be difficult. I think I was missing the days when the struggle involved walking. When the walker supported my weight enough that I could do it for a little bit. Now walking is so hard; it isn’t walking anymore,

I will be free…

“Well, you have five minutes to change your mind again,” she said with a grin. It was the night of the annual lecture that I help organize in honour of my late husband. As a family, we were preparing to go. It was very exciting; one of my stepdaughters was in town for the event. “Shall I go by Power Chair or drive in and take my walker?” There are pluses and minuses to either one and for the past hour I had been changing my mind at regular intervals. The pendulum swung once and I’d say, “I don’t like watching people react to the wheelchair.” When the pendulum swung low, I couldn’t decide. As it moved to the far side, I’d state, “I like using my legs.” We drove there. The walker was pulled from the van, I leaned on it and I pushed it past my son, who was holding open the door to the building. Once inside, I got tired of walking down the hall, turning to my daughter I asked her to pull me. I turned around, sat on the walker and she pulled me the rest of the way to the auditorium. I live with patient people.

That was a year ago. I have since decided that walking is very pedestrian……

This year I was talking to my stepdaughter before the event and told her “I’m taking the Power Chair, because I want to be free.” I smiled broadly, remembering how she had teased me last year for changing my mind so often. Freedom is relative. I meant I was free to move without making a huge physical effort. I was free! I chose to ignore other’s reaction to my wheelchair.  I was also free to move myself around without having to ask others for too much help. Perhaps, I was freeing others from the stress of looking after me.