Saturday, November 5, 2016

Weird Week


Life has been so weeiiirrrd this week!!! 

Alana, me, and Brittainy on Halloween
First, on Halloween, I lost two credit cards, one debt card and my iPad Mini.  Fortunately, I found them fairly quickly - thank goodness - but boy, did I sweat bullets until I got everything back! In an age where your actual identity can be stolen, people have to be so careful ....

On Tuesday, I received an email from a camp counsellor who I haven't seen in forty years! It was so great to get in touch with him. The best things I remember about Claremont Camp are this guy, the beautiful scenery,  rug hooking, and canoeing.

And then,on Thursday afternoon I ran into a friend who I hadn't seen in ten years.  It was so good to see him, catch up, and laugh at our memories.

Later that day, I took both cats to the vet. On the way home, I had one cat on my lap (in a carrier) and one (in a carrier) behind me on my wheelchair. It must have been such a funny sight!  (Both cats were meowing loudly!)  And yet, this guy, who was obviously high as a kite, came up to me and started rubbing my hair and saying, "Wow. Your hair is so beautiful and vibrant!"  He didn't even notice the cats! 

Of course, I raced away from this guy as fast as I could!

Today, at the market, this customer told me that she'd had a dream three nights ago about somebody writing on a board: "A.K.A." So, today she came by my booth and saw my signature and I told her those are my initials and she said, "Oh my god! I had no idea what my dream meant but it's like I was destined to meet you!" I was very touched when she began to cry and told me that she had a sister with A.L.S.
.

It's been an eventful, fun(ny), slightly weird week.  Except for that weird guy who touched my hair, it was great to connect and re-connect with people!

Monday, October 31, 2016

Anne Boleyn Who?



On Saturday I dressed up as Anne Boleyn, Queen Consort to King Henry VIII of England.   Some people knew this historical figure, but many did not. So, I had to recount the tale many times during the day.

Tonight, because it's Halloween, I'm dressed up as Anne Boleyn once again.  So, I thought I'd retell her history here.  It may or may not stop people from asking Anne Boleyn who?


Anne lived from 1501 to 1533, making her only 32 when she died.  If she hadn't met good ol' Henry she might have lived longer.  But Anne lost her head over Henry - literally!

Because 1) Henry had gotten her sister Mary pregnant and then dropped her like a hot potato afterwards, and 2) Henry was still married to Catherine of Aragon, Anne rejected his advances at first.

However, because Henry kept pursuing Anne,she basically challenged him and said no sex until you divorce your wife and make me your queen.

Out of love/lust for Anne, Henry attempted to do just that.  I say "attempted" because Pope Clement VII refused to grant him a divorce.  In ordinary circumstances this might have been possible (royalty at that time could get divorced in the blink of an eye), but the pope's hands were tied because Catherine's nephew was the Holy Roman Emperor whose army surrounded the Vatican menacingly.

Henry and Anne got married anyway. The pope, of course, excommunicated Henry, but Henry basically said, Fuck you - I'm going to start my own church and do whatever I want!  Plus, all of my people will agree with me that my first marriage was a sham. True to his word, Henry founded the Church of England and orchestrated an annulment to Catherine.  And, because he was such a powerful schmuck of a king, practically everyone agreed with him, and those who didn't simply kept quiet.  (Except for Thomas More, but that's another story ....)

 Nine months later, Anne gave birth to a girl named Elizabeth, who later became Queen Elizabeth I.  There was much pressure for Anne to produce a male heir because, like any patriarchal society, males were/are viewed more valuable than females.  Unfortunately, Anne never produced a male heir, but kept having miscarriages.

Because of this fact, or perhaps because after three years of marriage the bloom had fallen from the rose, Henry's eyes began to wander to one of Anne's ladies in waiting named Jane Seymore.  Fearing history repeating itself, Anne naturally objected and Henry resented her jealousy.

Things went from bad to worse.  Sensing the king's displeasure, Henry's advisors poured poison into his ear and made him believe that Anne was sleeping around with multiple men.  They even  accused poor Anne of  practicing witchcraft. 

Then came the shit show.  The men who were accused of having sex with Anne (including her brother George!!!) were tortured until they confessed, and then they were put to death.  Anne, to her credit, denied all of the accusations to the bitter end and professed her love to Henry, who very kindly ordered the best swordsman in France to cut off her head.

Thanks, Henry.  You're a gem of a guy.

Wednesday, October 12, 2016

The More Life Changes the More it Stays the Same


Life can be funny sometimes.  Take this morning for example ....

I opened up Facebook and it gave me a "memory" of nine years ago, when I was at a demonstration fighting for the rights of people with disabilities.


I laughed to myself because I had planned on going to another demonstration today.  How fitting that Facebook memory was!


Today, the other OCAP members and I were at City Hall to fight against the discriminatory practices that govern the Housing Stabilization Fund.  The HSF provides support for people on Social Assistance struggling to obtain or retain housing in Toronto, but there's so much red tape and so many hoops to jump through that it's almost impossible to get this funding.

Funding, it's always about fighting for funding.  ODSP and OW are the insufficient funds that poor people and people with disabilities try to survive upon. (If you have kids it's even harder!) Funding for shelters, funding for affordable housing.  They cut, we fight, gain a little headway, lose a few battles -  and then we start all over again!

Will I still be going to demos in another nine years?  If need be - you bet your ass I will!

However, hopefully, by then society will smarten up and learn about empathy and kindness.

Sunday, September 18, 2016

I Met This Cool Guy Named Nav






Every week I meet new and interesting people at the St. Lawrence Market.  It's one of the many reasons I like selling my artwork there.

This week, I met this cool guy named Nav. What made him so cool?  Well, he explained to me that every day he takes a picture of something/someone that has a positive vibe and puts it on Instagram, Twitter, and  his blog  (http://navsproject365.com/).  Every month Nav goes to a different country, takes pictures, and gets to know people.

I'll be honest, as I get older I get more and more cynical. I look around me at our society's obsession with sports, fashion, entertainment and think is this it?  Shouldn't we be doing more?  Shouldn't we be fighting for social justice and trying to save the planet from impending doom? Are we all just one mass of Nero's fiddling as Rome burns?

Certainly, many people do fight for causes (solidarity with the people in North Dakota, for instance, fighting against the pipeline!) but it seems like most people are complacent as long as we have food, shelter, and a comfortable life. Or, perhaps we don't know how to fight, so we put blinders on.

Having said all of this, Nav's philosophy got to me and I wondered what if everybody in the world took notice every day of something/someone with a positive vibe and passed it onto other people?  Perhaps we would become more connected on a deeper level to each other and understand each others' experiences. Also, if we viewed the world in a positive inclusive way maybe we could come together and fix the mess we're in.

Just a thought...



Tuesday, August 30, 2016

Run Wild, Run Free



So, this is a text conversation that I had this afternoon between my good friend Roger and myself:



Hi, Roger!  A bunch of friends and I  are going to see 
Equity at 6:30 would you like to join us?

What is Equity?
A movie based on a true story.

Sounds good.
It's a thriller.

Which cinema?
Plus, we're having pizza either before or after 
the movie, which is at the Carlton cinema.

Oh okay well I know how to get there :)
I'll let you know about the pizza!

Sounds good
That will be three consecutive pizza nights :)

Actually I ordered pizza on Saturday and 
it lasted me until last night! But I love pizza!
Remember Trash and "Hut Damage"?

Oh I remember Hut Damage
LOL those were the days!
Yes they were

I didn't have teenage rebellion years, it only 
started when I met you guys...And thank you!
LOL
I'm still having mine...or do they call that a midlife crisis?
(Picture of Roger beside his motorcycle.)

My philosophy is go with the flow. By the way, did 
you read my latest blog post about my mom having 
recurring dreams about riding a motorcycle?

No I didn't see that one. 

It was mostly about her love of birds but I also 
included her dreams about bikes. Not to psychoanalyze 
her but I think part of her yearned to be "free".
I think most of us have that. 

Pretty much I think.

Pizza at 5! Woo hoo!


After my conversation with Roger about pizza, the movie Equity, and our wild and crazy times during the late 80's and early 90's, a parcel of merch came for me.

One item was a set of note cards with the design of a black dog running.  I had to smile; the original painting was called Run Wild, Run Free, Dhalgren.


I thought to myself, in my own way I run wild and run free ....



Kinneret and I at the underwear show at Cafe California!

Birthday party at Royal York Hotel

Fresh dye job & new dress

On my 2nd  Belini

Holding McLovin'

Sexy cat stockings

Happy to see Larry & crew from Indiana

Leon at my art show opening

Yuula, me and Seth at my art show opening

Roger & I at Laura & AJ's wedding

Me, rocking my new gold outfit at the market

I hope that everyone can occasionally run wild and free, if not physically then spiritually..

Sunday, August 21, 2016

The Bird Woman of Guildwood


Four years ago today my mother passed away. As you can imagine, I've thought of her a lot within these 24 hours. Memories flood my mind which bring both joy and sorrow.

However, one thing has occurred to me and I don't know why I haven't thought of it before. My mom was a bird woman. Sure, growing up in Guildwood Village Mom took care of all our pets (dogs, cats, rabbits, gerbils and even a lizard named Isaac) and I honestly believe she loved all the creatures, she was especially nuts about cats! Our cat LuLu was our Mom's very favourite pet. "LuLu is a lady," she would proudly say.

And yet, we had a bird feeder in our backyard and Mom had a book on birds too. If she saw an unusual bird she would look it up in the book to figure out what species it was and what its habits were.

I also vaguely remember her saying that if she was reincarnated she wanted to come back as a bird so she could fly high in the sky. That was my mom. I think part of her wanted to fly or run free like the wind. She would tell me how many dreams she had about riding away on a motorcycle.

It was odd too, because birds seemed attracted to my mom as well. On two separate occasions, on the patio of City Grill, this small sparrow would come and perch on her head. Most people would freak out and scream but Mom just laughed and jokes that maybe it was trying to nest in her hair.

I've inherited my father's vast slide collection, and one of the thousands of slides was one with my mom with two parrots perched on her shoulders.

On Mom's last day on earth, my cousin Lesley looked out the window and said, "Aunt Verna, if you're out there give me a sign." Immediately a hummingbird flew by and my cousin took it as a sign that my mom had been reincarnated as a hummingbird. I'm not sure about anything to do with reincarnation, but I got a tattoo of a hummingbird in honour of my mom.

Mom, whether you are a bird flying high in the sky or a biker chick, I hope you're having lots of fun! I love you.

Thursday, August 4, 2016

I Am Very Busy


My friend Alana gave me this pencil case.  I laughed when I saw it.  Often when I'm asked, "How are you?" I reply, "I am very busy!"

Which is true.

When I came home from the hospital and I was well enough, I painted.







In fact, I'm preparing for an art show right now. It'll be at the Weird Things Gallery on August 18th.

I've gone to see Cripping the Stage, met the Lieutenant General, had fun at Pride, and went with my friend Leon to see a film about Frank Zappa called Eat That Question!







And now that I had my G-tube removed two days ago and I'm feeling fantastic, I'm going to be even more busy!

Watch out world, I'm coming through!


Saturday, July 30, 2016

Friends vs Doctors


I didn't go to the market today because I had been in so much pain yesterday, and woke up still in terrible pain! I was in agony! It was all because of my BLOODY G-TUBE! I hate that thing!!!!!!!!!!!!!!!! (Thank god it's being removed on Tuesday ...)  I could (and still can) feel the tube rubbing constantly between my ribs. Also, at the G-tube site, below my left breast, there's been this thing protruding from the hole and it keeps getting bigger and bigger and more painful. It's been like this for three weeks.

I've had the nurse from CCAC look at it, sent pictures of it to my family doctor, and showed it to her substitute as well. They said, "Yup, that's normal. It's just skin growing." But none of them gave me any helpful hints on how to keep it from hurting. 

Today, however, my new employee Alison, who also works for my friend Jenny, texted Jenny about this problem. Alison and I knew that Jenny once had a G-tube herself. 

This is the information Jenny texted to Alison about my problem:

She has granulation tissue and a bit of purulent discharge.

The red raised stuff is called granulation, it hurts a ton. Like a ton!

You can use silver nitrate, alum (the pickling spice) in a paste, or steroid creams/diaper rash creams to shrink it.

You can use those things, on that red tissue, and it will make it shrink and go away.  You can also use a bit of Emla or lidocaine cream on it/around it to ease some of the pain. 


Stabilizing the tube can help too, so keeping it secured and moving the least you can.


Yeah, it's totally normal. That red tissue is formed when the stomach is trying to heal itself. It's not at all dangerous. Just really painful but it can be treated and the lidocaine can help a ton. Good luck and let me know if I can do anything else.
 
It sure is more information than any of the "professionals" had given me. Thank you Jenny!  I'm in far less pain than yesterday since I took your advice.

This whole situation has made me wonder, what if before doctors did procedures they could refer people to a networks of patients who have had those same procedures. That way people could get a firsthand experience from the person who has already had the procedure. Yes, I know doctors would absolutely hate everything about that, but idealistically, I like the concept. Unfortunately, we all know that our medical system is neither user-friendly nor practical.

Sunday, July 17, 2016

What Do You Want for Your Birthday, Anne?


Last night, when I took Motria out for her birthday at Hot House,  I was taken aback when she asked, "What do you want for your birthday, Anne?" My mind went blank.  We were, after all, celebrating her birthday not mine.

August 12th is a little under a month away, certainly, but I've been focusing on other things, like getting my G-tube removed for instance, and training new employees. I'm back at the market (Yay! You can't keep a good woman down!) and I'm preparing for an art show on August 18th.  

What did I want for my birthday?

The first thing that always springs to my mind whenever I'm asked this question is I want Rob and my mom back. Impossible, of course.

The second thing that popped into my head, although I didn't say it, was I want the world to be less violent and corrupt. I want the world leaders to focus more upon the environment, climate change, the protection of animals, and to respect the rights of people everywhere. Commerce, trade, and making money hand over fist should NOT BE THE TOP PRIORITY OVER EVERYTHING! (Capitalism - ugh!) I want humanity to step up to the plate and take responsibility for what we're doing to the planet and to each other.  I want reason and acceptance to be the norm not violence and hatred. I want people to please please PLEASE stop hating each other just because of differences in skin tone, sexuality, gender identity, or religious beliefs!

Can I have all of this for my birthday, tied up with a big red bow? Pretty please?

Sunday, July 3, 2016

Bloody G-Tube!


WARNING GRAPHIC CONTENT

Bloody G-Tube!  Literally.  When I changed the dressing this morning,  there was a bit of discharge (which is, unfortunately, typical) and some blood coming from the opening. And, as usual, redness around the opening from constant chafing. It was a lot more red today, though!

I took photos of everything to show both the visiting nurse and my family doctor, but I won't post them here because they look a little grotesque.

Excuse my venting, but I'm kind of fed up with the whole G-tube thing! I may smile and act bravely, but I have pain in my ribs constantly, and it gets worse when I paint, work on the computer, or if I even chat for a long-ish time.  Of course, I grin and bear the pain because I want to live my life the way I want!

However, there are things I just can't do because of the G-tube.  I can't do fine detail work on my paintings because I need to cross my arms over my torso and the G-tube is in the way. I can't sleep without sleeping pills because I sleep on the side where my G-tube is located. And, since I'm being "graphic" here, I can't even use my vibrator! Now that really sucks!!!

Do doctors think about such things or even care? No! Bastards! And, if they had put any thought into giving me this horrid procedure in the first place it might have occurred to them that this woman has Cerebral Palsy, a condition which makes her movements spastic, she might inadvertently whack herself where her G-tube is occasionally. I don't do it often but when I do it's so painful.

Doctors, generally speaking, are ableist shmucks who think people like me sit in one place all the time and don't have lives. Hell, they were amazed that I actually ate orally for 57 years!

They coerced and practically bullied me into getting the G-tube. If they don't remove it soon, I'm going to do the same thing to them. Remember the TV movie "Network" where the guy yelled out the window, "I'm mad as hell and I'm not going to take it anymore!"? That's me.


Tuesday, June 21, 2016

Waxing Poetic


For weeks now, I've been working on my Directive.  You know, making notes just in case I end back in the hospital again. (God help me, never again!)   I'm as healthy as a horsee now, but you just never know,  you know?  Terminal cancer,  a stroke, coma - I had to figure out what I actually wanted to happen in those kind of scenerios and write them down.

And then I began to think about the bigger picture, my last chapter.  What do I want then?

So I wrote this poem:

         Mortality

I've been thinking about mortality,
The cold hard fact of its reality.
It hurts my heart -
It hurts my spirit -
It hurts my head  -
To know that beneath the cold, hard ground will one day be my eternal bed.
I have Hamlet's doubts,
I ponder  of the theological ins and outs.
Is there an after party,
Or, forevermore, is this it?
More of the same,
More of the shit?
One thing I know,
Before I go,
I want laughter and love,
I want to watch the clouds gently roll by in the blue skies above
There should be music for my ears,
Nothing too sad,
Nothing to bring the fear of tears.
Delicious food to delight and tickle.
The taste buds will be a must!
No worldly matters,
No tragedies of the day will be discussed.
Well-formed men should dance,
Giving a small spark of romance.
As my final days begin to end,
I will yearn to have around me
My family and every close friend.
I want no tears to be shed,
Only laughter, joy, and wonderful memories instead.

Friday, June 17, 2016

SVU, Elephants, and Giving Advice to Olivia Benson

I had another weird dream last night and it's stayed with me all day long

In the dream, I was part of the SVU team, and we were all trying to figure out how why there were so many huge mass political demonstrations in this streets that featured random animals.  The first demonstration had a beautiful, noble-looking horse that led the way.  The second one had a pack of unruly dogs on leashes. And the last demonstration had a very unwilling elephant that kept depositing shit upon, the streets.

Throughout the dream, though, I was quite obsessed with SGT Olivia Benson's love life. Hér boyfriend was absolutely besotted with love for her, and she kept saying that she loved him the most but that she was in mourning for her former lover and didn't think she could become committed to anyone right then.

Like I said, I was obsessed with their relationship, and I began to weep and follow them around everywhere. At the end, I actually got into Oliviá's cot to wait for her.  I had to tell her that life was too short to wait for love, that she should grab it with both hands and never let it go.

Tuesday, June 7, 2016

Happiness is No G-tube!


Hi, everyone!

I just wanted to share some very good news with you all.

Today I went for a swallow test and it went sensationally well.  The long and the short of it is that the SLP specialist said that I could have the G-tube removed.  She'll call my doctor who will make arrangements to have the procedure done. I'll continue to eat very carefully, of course, and I'll see a dietician at Toronto Rehab who will advise me on which foods to eat in order to gain weight.

You have no idea how happy I am about all of this!!!!!!!!!  I've hated the constant pain of the G-tube and feeling confined to my apartment.

When the G-tube comes out, I'm going to have the biggest party you've ever seen!




Sunday, June 5, 2016

Guess What, Mom!

All week long I've had this nagging feeling like I had to call you and tell you about my news.

"Guess what, Mom," I'd say.  "I'm so happy because I just got a new portable feed pump! That means that I can actually leave the apartment whenever I want, go wherever I want!"

"Guess what, Mom! I'm going for my swallow test on Tuesday. I feel both excited and nervous about this. I hope they tell me that I can hear the G-tube removed.  I hate it so much!"

"You'll never guess who I met today, Mom!  I went with Barbara Collier as her guest to accept her award from the previous Lieutenant Governor of Ontario David Onley.  You know, the guy who used to be on CityTV News.  Yes, Mom, I know you prefer watching the news on CTV."




"Hey,  Mom!  I went to a demonstration today at Dundas Square to protest this terrible movie called Me Before You.  It's about this white, rich dude who recently was in an accident and became a quadriplegic.  He falls in love with his care giver and they get engaged, but he decides to end his life because he doesn't want to be a burden on her. Hollywood always wants to depict the lives of people with disabilities as worthless and too hard to bear, but, Mom, you always told me that I made life interesting and fun for you!"

Today, Mom, I really yearn to call you. Today is your birthday, and I want to wish you a happy birthday and tell you that I love you.

Happy birthday, Mom, wherever you are!  I love you and miss you so much!!!

Friday, May 20, 2016

Best Day in a Long Time!


Yesterday I was cursing Mercury Retrograde to the hilt.  There were communication breakdowns, computer problems - and I had an upset stomach!

Today, however, it was just the opposite!  I'm SO happy! 

The communication breakdown got resolved, my stomach felt much better, and I went on a marvelous celebratory shopping spree.


But the very best part of the day was when I went to Toronto Rehab for my first appointment.  They measured the strength and agility, and were impressed by the results.  I was given water and then nectar to drink. That went well, as well as the consumption of toast and the apple sauce.

Unlike the SLP's (Speech Language Pathologists) at Mount Sinai, Dr. Bayley and Talia (an SLP) were optimistic and upbeat.  They were respectful towards me and were very encouraged by my swallowing results. Unlike the SLP's from Mount Sinai, they didn't tell me I should never eat orally again.  Instead, they broadly hinted that it might be possible, if things go well, the G-tube could be removed totally - or, it might be a combination of the G-tube and eating orally.

I'm so happy - I'm being listened to and being respected!