My Hopes and Wishes for 2025

Cheers to the past, present and the future!  🥂 May 2025 be a cool, great, fantastic and brilliant year! May there be more love and less hate in the world!  May people have more sense and empathy as well!  These are my hopes and wishes for 2025… ❤️💝💕🥰💗

Ready To Fight Again

 

 

I’m afraid that this blog post may take a few pauses to complete. One reason for this because I’m juggling so many different things at once.  (“What’s different about that?” you’re asking.) Another reason is because this topic is very upsetting for me.  It’s infuriating, humiliating - and I feel like holding my head and screaming, “Not again, not again, not again!”

l attended a Zoom meeting on Friday, October 18th, with my CDAC (Communication Disabilities Access Canada) group.  Before the meeting actually started, one of the members told me something that was very disturbing.

I’m not going to mention the name of the person, because I’m not sure if they would be okay with it or not. However, I will say that they were one of the people who, thirty years ago, were instrumental in the foundation of CILT (the Centre for Independent Living in Toronto.) 

CILT is a government funded organization, which provides funding to people who have physical disabilities, like me, so that we can hire our own caregivers (or, as most people call them, employees or PSWs) to assist us with our needs in our daily lives.  The funding we each receive is called Direct Funding, which allows us to advertise for people, train them, and pay them for the hours they work. Direct Funding gives people like me true independence and self-determination. There is nothing more wonderful in this whole world than to know you’re independent and have a sense of self-determination over your own life!

Well… on that Friday afternoon, the member of the CDAC told me that someone from the government (I don’t know from which branch) consulted with some people from CILT on whether or not people actually needed Direct Funding, or whether they could go back to using care workers from agencies, like Tobias House.

(Kill me now!)

I need to pause here.  Maybe I’ll drink some Crown Royal and beat up one of my pillows - but I’ll return in a short while.

***

I’m back.

The newspaper article above is from about 19 years ago. I went to talk with Toronto Star journalist Helen Henderson at that time to discuss the cases of abuse, which were happening incessantly at many, many agencies that provided 24 hour assistant assistance for people with disabilities.

Although they weren’t with me at the time, two of my friends, Tina MacDonald and Lolanda Kerns (better known as Cookie) added their two cents to the article.  They lived in the same apartment building as I did and received the same assistance from the same Tobias House PSWs. 

Like other 24 hour on-site agencies, Tobias House had an office space within the apartment building. There, clients could go readjust their schedules, discuss specific tasks that they needed help with, or go register complaints about certain workers with on-site managers 

Tina, Cookie and I (as well as other clients in the building) had similar, if not the exact same issues with the exact same PSWs. For example, there was this one PSW who would come into a client’s home, help them get onto their toilet seats, and then go out onto the client’s balcony and fall asleep - for literally hours! This meant that the clients were stuck on their toilets for hours at a time, unable to do anything.

This one PSW was never fired, no matter how many times people wrote up complaints about them. They even had the nerve to actually yell at me for complaining about their lack of professionalism! 

However, “lack of professionalism “ was just the tip of the iceberg. Some of the PSWs displayed so much disrespect and distain towards their clients that it was devastating to people’s psyches. 

I had a friend who lived in another apartment building that had 24 hour PSW agency assistance.  This agency was run by the March of Dimes.   With all of the good March of Dimes does in the world, it was rather shocking to see how the management of this agency treated my friend.

Time for a pause.   I’ll be back ….

***

Please forgive my very long pause. I had to reply to many emails, work on my recent painting, sell my artwork at the St. Lawrence Market, among other things. 

As I was saying, my friend received 24 hour assistance from the March of Dimes agency. He, like myself, was unable to speak, and so, used a speech board to be able to communicate with people.

Watching someone point to letters, phrases and Bliss Symbols on a large piece of laminated cardboard in order interact with them should be fairly easy, right?  Not according to the PSWs of the March of Dimes, who outright refused to even try to communicate with my friend this way.  Because of this fact, my friend couldn’t let them know if the pieces of food they were giving were too large for him to eat, and he would often choke during meal times due to this act of negligence.

My friend went to discuss the situation with the site manager of the March of Dimes agency.  With tremendous frustration, my friend was told that the manager was siding with the PSWs in this matter. They said that the PSWs shouldn’t have to be expected to interact with him by reading his communication board.

(What the proverbial fuck?!)

CILT gave my friend a few hours during the week to hire his own personal PSWs - although, technically, it wasn’t through the Direct Funding Program.

The people my friend hired adored him and did anything he requested. They had no trouble communicating with him, nor were there any problems/conflicts in regards to helping him to live his best life.

I was very fortunate to have my late husband Rob with me when I was receiving PSW services from Tobias House. When they were late, or didn’t show up at all, Rob would help and support me. If they made me cry by humiliating or taunting me, he would comfort me and tell me that everything would be ok.

Other people weren’t so fortunate.  Besides dealing with no-shows and humiliation, some people had to suffer physical and/or sexual abuse. I know this because they were my friends, and they told me in great, horrendous detail about their experiences. Most times, the site managers would say that unless there was hard evidence, clients would have to still welcome the abusers into their homes. Most of the clients, to protect themselves, would move out and try to find another apartment building that had 24 hour PSW assistance.  Or, if they applied for Direct Funding and were lucky enough to receive it, it was like finding a pot of gold at the end of a rainbow.

I often tell people that nothing really scares me. Not heights, enclosed spaces, needle injections,, snakes, big cats, hippopotamuses - hell, not even death! 

However, the mere thought of losing my independence and self-determination chills me to my very bones. The thought of going backwards, to a time when I could not hire my own employees (or, dismiss them if they didn’t meet my personal qualifications) only to succumb once again to the abuse and harassment of both the PSWs and the site managers of government funded agencies, makes me feel like (please excuse me for saying this) ending my own life.

Time for another pause.  I’ll be back soon …

***

There’s a memory in the back of my mind, just itching to be exposed. Before I moved into the apartment building that had the Tobias House on-site agency, I used to live at a place called the Participation House Apartments. Same thing ….  Complaints were written up, but rarely taken seriously.

Back then, Rob and I weren’t married, only dating. Rob would come over to my apartment and stay over for a few days and then leave.  Mostly, I was on my own, with scheduled bookings where the PSWs would come and give me assistance so that I could live my life. Like Tobias House, admittedly, there were some people who I liked and who respected me.  However, there were many others who acted like they didn’t want to be there, that the mere presence of their clients was a huge headache for them. They would roll their eyes at me if I asked them to move one small object from one spot on my small kitchen table to another spot on the table.  They would claim that they didn’t have time, but I could see by the clock that there were still ten minutes of the shift left.

I can’t remember any actual cases of actual physical abuse.  (These types of incidents may have happened, though, without me knowing about them.)

I do know that there was one traumatic thing that happened. to me under the agency of the Participation House Apartments that I’ll never forget.

One day, a new PSW, who was still only in her second week of training, was told by another PSW to give me a shower. Left on our own, the new PSW had trouble communicating with me right from the start!

She put shampoo on my hair, which immediately started running into my eyes, and then started spraying scalding water over my hair and body.  Frustrated and in pain, I kept trying to point in the direction of my communication board so that I could try to ask her to please turn the heat down. She didn’t understand what I was trying to say, and so, she ran out of my apartment, leaving me naked in the shower. 

When she returned, the site manager was with her.  He looked at my naked body with an utter look of disgust on his face, making me feel small and ugly. Without talking to me or asking any questions, the site manager abruptly left. The new PSW trailed after him. I felt like I was a complete afterthought.

Fortunately, a few minutes later, another PSW, who I really liked, came into my apartment. She helped me finish having my shower, eat breakfast, get dressed and sit in my wheelchair. There were no problems!

Physical, sexual, and emotional abuse should not happen. Neglect should not happen. Unfortunately, these things still do happen under the agencies that provide 24 hour on-site services for people with disabilities.

As many of you might have noticed, I’ve avoided using the terms “caregivers“and “care services” in this blog post. To me these are oxymorons.  If you’ve read what I’ve written in this blog post so far, I’m sure you get my meaning.  Certainly, there are many PSWs within these agencies who do care about their clients, but it is those who do not care and are abusive - they are the problem!

The thought of losing my Direct Funding terrifies me!  With Direct Funding, I am able to hire people who understand that their job is to be my hands, feet,  and voice. They understand they assist me in my life, but they don’t control it. 

With Direct Funding I can run my own art business, do banking and shopping, own 3 adorable cats, and just basically have a normal life. 

I’m positive if you asked anyone who relies on Direct Funding to survive and thrive about the possibility of losing the funding they would have the same gut reaction as I do - fear and anger! It’s November 9th, which is approximately 3 weeks since I began this post. At first I felt mostly fear, now anger has grown over this time. If the government is planning on taking away this precious funding from me, and other people like me, they’d better prepare for a fight! 

No more pauses. 

Another Saturday Story

 

Life in and around the Market is very interesting, to say the least. 

As usual my customers were so friendly and respectful. One woman was so bubbly and that I also sat asked if she would like to be one of my PSW’s. There was also a man from Columbia who was very enthusiastic about my artwork and my merchandise!

After the Market I went by myself to Global Pets to buy more cat food and the same woman helped me and we chatted for a while. Afterwards, when she opened the door for me to leave, I saw this man, who was either drunk or high, with his pants lowered to his ankles and talking to himself. He had enough modesty to keep his underwear on, though. I looked at him for maybe 3 seconds and zoomed away. 

When I was in front of the LCBO, I met this cool guy who was handing out pins with the Palestine flag on it. He said his name was Dave and he wanted to help the Palestine cause. We chatted a bit and he had no problem reading my communication board. He put of of his pins on my dress and I left feeling very happy! I don’t feel comfortable going to crowed protests, but at least I can show my support with this pin.

Can someone give me a millionaire dollars so I can buy a condo near the Market and be amongst the wide variety of cool, great, fantastic and brilliant people in the area?! 

Seen and Unseen

 I love St. Lawrence Market.  If I could, I’d flaming live there!

On September 21st, it will be my 23rd year anniversary of selling my artwork at the St. Lawrence Market. Generally speaking, I would say that 99% of the time the people I interact with there are friendly and respectful. Sometimes, I run into absolute knob heads who talk about me as if I’m not even there, or some who actually pray over me, trying to evoke the power of God to have Him “cure” my disability.  Most people, however, like the other vendors and my regular customers, treat me with kindness and the utmost respect.

I feel seen, and no different from anyone else.

This past Saturday, I met many people who were so friendly and enthusiastic about my artwork.  One couple truly stood out from the rest.  The man said that he was from Ireland and that he had some of my artwork there, because he had purchased some from my booth years ago and had taken it back with him. The woman said that she was from Britain and would buy some of my cards and take them home to show them to her friends.

That made me happy and feel seen.  Well, not only me but also my artwork, too. Maybe I’ll become a famous international artist one day!

I also felt happy about the discussion the three of us had about accepting people for who they are and showing them kindness.  We all agreed that it was the only way to move forward in our future.

After working at the Market, I headed over to Global Pets. It’s a regular routine for me, because I need to buy food for my three cats and spoil them with new toys and treats.

 Whether I’m on my own, or if one of my PSWs is accompanying me, the manager of this Global Pets always talks to me directly and respectfully.  Perhaps it’s because she has a son who has Cerebral Palsy and understands how ableism can hurt a person. 

After that, I went to Rexall and browsed around for a while.  Cassandra, one of my PSWs/friends, met me there, and together, we headed to the Spaghetti Factory. We had no reservation, but knew that it would be easy to get a table at 4:30.

Ten minutes later, Cassandra and I were sitting at a table with the usual complimentary roll of bread,, garlic butter, and glasses of water.

Now it was time to order our meals. I pointed to the letters, words, and phrases on my communication board, and Cassandra interpreted what I had said to the server.  I wanted my usual: a Bellini with extra ice to make it slushy, spaghetti with spicy meat sauce (extra sauce on the side) and a Caesar salad (with extra dressing on the side.)

The dinner, as usual, was delicious.  The service, however, left much to be desired. The server barely looked at me and never spoke to me. In fact, it seemed to me as if they were trying their hardest not to look at me at all!  The only thing that impressed me was the fact that they had given me a cup and a half of Bellini to make sure that it was very slushy.

I gave that server a 15% tip.

The server I had the week before received a 25% tip from me.  They were friendly, talked directly to me, and even looked at my communication board themselves to understand what I was saying.

This past Saturday I zoomed home in my power wheelchair, just like I do every weekend evening, leaving Cassandra several blocks behind me. Born to Be Wild played in my head. Inwardly, I cursed those who walked slowly ahead of me in clumps of two or three, or those who focused more on their phones than the people around them. I smiled broadly at the people who noticed me and let me pass. 

After a long day, I was exhausted and just wanted to cuddle my cats and put on some cozy clothes.

I was so close. I was on the south east corner of Church and Carlton, waiting for the light to turn green. From the west side of the street, a man was pulling a cart, filled with various items, behind him. When he reached the corner I was on, he started to talk to me.

“Oh my god,” he said. “I love you!  I love you! The whole world loves you, too! You’re so beautiful! The whole world thinks you’re beautiful, too!  And, you smell so good, too! If I wasn’t so drunk I’d kiss you!”

The man disappeared & the light turned green. As I crossed the road to go to my apartment, I couldn’t help chuckling that this man had indeed seen me! 

A Double Header Kind of a Day

 

May 13th was a double header kind of a day for me.

First of all, it would have been Rob’s 61st birthday today.  That was hard for me, because I miss him so much. Days like this overwhelm me with sadness and reflections of our past together. Besides my mother, Rob knew me the best and loved the very bones of me!

Because of this, I felt like cancelling out on going to the Ontario Court of Justice today, where I was supposed to give a critique of the building and the attitudes of its workers, from the viewpoint of a person who was nonverbal and physically disabled. 

However, I didn’t cancel out on this important opportunity.

There were other people who came to share their opinions as well. Some had different types of disabilities, while others were representing the Court of Justice. We were all there, though, voicing our opinions on how to make improvements to how things were within the building.

The automatic doors, by which to enter and exit, were laughable. To enter the building, there were double doors, but only one door opened;  someone else had to manually open the other one.  This made it difficult to wheel my chair inside. When I went through the first set of doors, the second set had the same problem. Not only that, but a button had to be pressed to open the door, and there was a time limit on how long it would stay open.  I mentioned to the coordinator that if I had been by myself, without my PSW/communication facilitator, I might not have been able to go through the doorway before it closed.

Once inside, we were all expected to go through a security checkpoint, which meant showing the guards our possessions, such as our I.D.’s, bags etc.  For many people who use wheelchairs, such as myself, we tend to securely attach our bags to different sections of our chairs so they don’t fall off, and the things that are important to us don’t get stolen. Providing my I.D. was simple, because I always carry it around my waist, inside of my fanny pack. However, I was unable to put my duffel bag and briefcase into the examination box (or whatever it’s called) because they were tied up too tightly.  So, the security guards waved their  electronic wands over everything and seemed satisfied that I wasn’t carrying a bomb or anything.

After that, we went to the information desk to ask where we could find the washrooms and elevators. The woman behind the desk answered those questions easily.  However, when one person in my group, who had issues with anxiety and was unable to read, asked her 1) were there any other places from which to get information other than the intensely noisy area that we were currently in, and 2) were there any sort of signage that had symbols instead of words, she looked blankly at him and said she didn’t know how to answer either of his questions.

I then asked my own question for the woman behind the desk. I explained that sometimes I went to places on my own, without a communication facilitator.to assist me. There have been many, many people who have picked up on how to read my communication board easily.  Did she think that she, or any of her colleagues, would be able to communicate with me, one on one?  Flustered, she said that she didn’t know.  She had just started working at the court.

Discouraged upon seeing the lack of knowledge and training that this new person received regarding the needs of people with disabilities, I continued onwards with my group to check out how accessible the washrooms were.

Ridiculously, there were double doors just to get into the hallway where several washrooms were situated.  Mentally, I groaned and rolled my eyes at how, once again, obstacles were being placed in our way.  And, like the doors at the main entrance, I wondered why they couldn’t have fully automated ones, the kind hospitals, grocery and drug stores have, where they simply slide open, without having to press a time sensitive button.

I won’t say much about the accessible washrooms, because I rarely use any when I go out for the day.  I will say, though, that it was incredibly roomy, especially since there was only one toilet in the room!

After this, a man escorted us up to the 4th floor, via one of the elevators, so we could take an actual look at one of the courtrooms.

I can’t remember what his name was or what position he held, but he seemed nice - that is, until he began talking about me in the third person to my communication facilitator! With the help of my communication facilitator, I spelled out to the man that I’d  prefer it if he’d please talk directly to me.  He seemed taken aback, and then, suitably embarrassed.  I smiled at him to show him that there were no hard feelings.  Inside, however, I was very disappointed and saddened. 

When we went into one of the courtrooms, I was truly shocked by how small and cramped the space was. I tried to envision myself sitting on the witness stand or in the jury box. It sure didn’t look like a scene from Law and Order! It was odd, because I had been in another court room about 13 years ago and it had been much larger and roomier.

After that, we all dispersed and went our separate ways. 

I went home and, in honour of Rob, I had Swiss Chalet and Crown Royal. I drank to his memory, this wonderful man who loved me for the person I am and saw past my disability!

I also drank in anger and frustration over what I had experienced that day. I thought about my age (I’m 65) and wonder if anything would ever change in how society views people with disabilities. Will there ever be a time when things would be  truly accessible and for people to understand that just because I’m non verbal doesn’t mean I don’t have a brain in my skull? I’ve been on this earth for 65 years, and I, and people like me, have been fighting for our rights and to open up peoples eyes. It’s often very frustrating, but what can I do except go on committees and love my life? I honestly think that by going out into the world and showing people who I am as a person is the best way to change the world. I can only try, anyway. 

A Special Saturday

 

I love Saturdays, but some Saturdays are more special than others. 

Take this past Saturday for example. Despite getting rained on my way to the St. Lawrence Market, I was very cheerful and upbeat and met many nice customers too. After the Market I went to Global Pets to pick up cat food for my three babies. 

However ,things started to become almost ridiculously fantastic when I had left a Rexall store in which I had been browsing. Suddenly, out of the blue, this good looking man handed me $20! I smiled at him in gratitude. I’m not proud, I’ll take any money that people offer me. However, physically it was impossible for me to put the money into my Fanny pack and it was difficult to drive my wheelchair away with a fresh new bill in my hand too. The guy, upon seeing my predicament, came up to me again and asked if he could help me in any way.  Thankfully, he understood when I gestured to my Fanny pack that I needed to put the cash into my wallet. I pointed to my communication board and said “Thank you” - he understood and smiled at me as I drove away! Our brief interaction made me even more happy than the money he gave me, because he saw me as a person. Plus, he was hot! 

I met my friend Janet and my employee/friend at The Spaghetti Factory for dinner. It wasn’t too crowed so  we got a table within 10 minutes. Having been a customer for 50 years, all of the restaurant staff knew me and greeted me graciously. 

The three of us sat at a table and started ordering our meals. Suddenly, this guy in a Toronto Maple Leafs sweatshirt came over and plopped down $150 onto our table, saying that he wanted to treat us to dinner! Of course, we said Thank you for his kind offer and accepted his donation. 

He chatted with us for a while, telling us about his daughter who had CP, like I do, but, sadly, she had passed away when she was nine years old. I told him I understood his pain, because my husband Rob had died 14 years ago. With my iPad, I showed him my paintings of Rob, as well as my other artwork. When he saw my painting “Feelings Of Invisibility”, he offered to commission me to do a remake for $500. Of course, I said yes! 

What a day! I love meeting kind and generous people, who also see me as a person. I wish everybody in the world could act with such kindness and empathy. 

Catching Up on What’s Been Happening

Yes, I know, I’ve been a bad blogger. Shame on me for not writing as often as I should!  It’s just that 2024, so far, has been incredibly busy for me.  Good things… and not so good things have happening to me.

First, the City of Toronto asked me to give a speech to a group of social workers, recounting the experiences of my life. They all seemed to enjoy my talk  -  oh, yes, and they got to watch Feelings of Invisibility, too, which they loved!

The day before this happened, though, I was filmed in a new TV show, produced by the CBC, caller #thesqueakywheel  -  an amazing, hilarious new series, where all of the cast and crew have different types of disabilities.  Please watch it when it debuts in a couple of months time!

I still love to paint, and I keep getting more commissions for paintings.  However, because of snow and rain storms, I wasn’t able to go to the St Lawrence Market for two weeks.

The three not so good things that are happening in my life are:

1). My rent might triple because of a new City of Toronto law.

2)  My whole apartment was totally flooded last Saturday when I came home from the market.

3) Both of my feet and calves have been sore and swollen for over a month.  My doctor said that she thinks I might have a blood clot.  There are no hospitals accepting patients who need Doppler X-rays until April 23, though.

I am panic stricken.

Merry Christmas

 Im sorry for not writing more often but I’ve been extremely busy. Like, never before in my entire life, busy! 

However, I wanted to wish all my readers a very Merry Christmas and to show you pictures of my life taken recently!

An Ironic Day

 Today was Remembrance Day. The first ironic thing was when the St Lawrence Market rang a bell at 11a.m., and announced that we should give a moment of silence for those who lost their lives during WWI, hardly anybody paid attention, and small children cried from the sudden loud noise.

The second, well, actually,  main reason for the irony of the day is its symbolic significance. Remembrance Day is about remembering those who passed away in a horrific war.  It is is time for reflection, to say to ourselves, “Wow, that was really terrible! We  shouldn’t do that again!” Instead, there’s a war between Russia and Ukraine and another war between Israel and Palestine (there’s other wars going on in the world too!) War is the biggest past time, besides sex and sports. 

I guess what really upsets me is the war between Israel and Palestine, it hurst my very soul that thousands upon thousands of innocent civilians are being slaughtered every day. I don’t like to even call it a war because the civilians have no weapons. 

The UN and all the politicians know what’s happening and, yes, countries like France want to call for a ceasefire, but countries like the US and Canada seem actually squeamish about doing this. I don’t know why. All around the world people are protesting and demanding a cease fire. Why aren’t our politicians listening? 

After I left the Market, I saw a homeless man shivering in the cold and I automatically gave him some money. Maybe 5 seconds later I saw a couple run up to the man and give him coffee and pastries. I felt so happy and thought, yes, this is how life should be. People should have compassion for one another. We shouldn’t beat or kill people for differences or to conquer land. 

On Remembrance day, let’s try to remember to be compassionate and kind to each other. 

During this month, this song keeps playing in my head. The link to it is below. 

https://youtu.be/adPIeQDeCsU?si=GhY_gMk_7SYJhXG6

A Brief Biography

The OFCP (Ontario Federation for Cerebral Palsy) asked me if they could put a link on their website to Vimeo, which has my short film ‘Feelings Of Invisibility’.  I, of course, said yes because I want everybody in the world to see it! 

The OFCP also asked for a short Bio from me. This is what I wrote: 

 

My name is Anne Abbott. I was born in 1958 with a condition called Cerebral Palsy.  However, it was a year later, just after I had my first birthday, when the doctors officially confirmed that I, indeed, had C.P.

 

I’ve often wondered if the delay of the diagnosis was due to the kind of kid I was.  My mother used to tell me that right from the very start I had such incredible determination and endless energy.

 

On the day of my christening, I consistently played with the pages of the Bible and the minister’s cross. At the doctor’s office, on the day he was attempting to tell my mother that I had Cerebral Palsy, I kept trying to pull away from her grip in order to grab a pen from the desk between them.  The doctor, exasperated, asked my mother, “Where does she get her determination from? You, or her old man?”

 

As a toddler, during nighttime prayers, my mother would always say, “Please, God, help Annie walk and talk.”  It was here that I would move my legs under the covers in a running motion, signalling to my mother that I wanted her to add, “and run and play.”  I wanted to run and play just like my brother and his friends did. Certainly, I was included in all of their games, but I wanted to climb trees and get skinned knees myself.

 

I had so many dreams and schemes for the future when I was a child. I wanted to be a doctor, an actress, a dancer, a writer, an artist. I wanted to move out when I was older, get married and have children of my own - just like everyone else!

 

Sadly, though, as time went by, perhaps because of societal ableism or my own teenage self-loathing, I didn’t follow through with a lot of my dreams.

 

And yet, my determination and energy have never wavered in the things that truly matter to me.  Art and writing were, and are, of the utmost importance. As a person who is nonverbal, expressing myself has been absolutely crucial to my survival and psyche. By communicating my thoughts and feelings, upon either canvas or tablet, I feel understood and heard.

 

If you have watched the biographical short documentary “Feelings of Invisibility “(produced by Charmaine Lewis), you’ll know that. I did move out on my own and married a wonderful man named Rob. Oh yes, and I started my own art business called Annie’s Dandy Note Cards and Artwork. I’ve been selling my artwork every Saturday at the St. Lawrence Market for 22 years. I’m also a member of the Canadian Communication Access Alliance, which focuses on the rights of people with communication disabilities. 

 

Our Song

September 26, 2023

 

Our Song

  

 

It played during the first bloom of our romance.

It played at our wedding for our first dance.

It seemed like nothing could go wrong as long as we heard our song.

 

 

Love of my life I love you so …

               

Ebb and flow, ebb and flow,

Despite all of life’s trials, tribulations and complications,

Our love for each other continued to grow.

 

 

Love of my life, don’t ever go …

 

I’ll never forget that one day, so long ago –

The doctors told me that you would very soon, simply slip away.

And so, I sat by your bedside day after day,

After day,

After day ….

I held your hand, stroked your face and mass of curly hair,

Wanting you to know that I was there, and with all of my heart, cared.

Over and over, I played our song,

Hoping that, somehow, it would make you, once again, healthy and strong.

 

 

I love you, Darling! I love you only. …

 

I was your wife and knew without a doubt that you would survive.

We were happy for quite a long while.

Through good and bad times, we could make each other smile.

Like two puzzle pieces we fit together perfectly.

Our love would last forever, we knew this with great certainty.

Stars in the sky, they never lied.

You were my groom, I was your bride.

 

Tell me that you need me, don’t say goodbye …

 

Like the worst form of déjà vu,

Once again, I was there holding your hand,

Worrying about you

Once again, I played our song,

Fearful, this time, that there might be something terribly wrong.

 

For two days and one night,

They told me that, yes, your heart was damaged, but everything was going to be alright.

Tests next week, they said.

Tests and, until then, a lot of rest.

 

I was your wife,

And I knew with every single cell of my being that this time you would not survive.

 

 

Don’t ever, don’t ever, don’t ever, make me —

 

Lonely.

For twenty-one years you had been my one and only.

During all this time, you had always been loving and true,

There was nothing I didn’t love about you.

You had been sweet and kind.

Now that you were gone,

I felt as if I was losing my mind.

 

Your heart had literally been broken, beyond repair.

I found it hard to grasp that you would no longer be there.

Day after day …

After day …

After day …

I felt tormented by shock and unbearable dismay.

 

Ebb and flow,

Ebb and flow.

There’s no place to hide, no place left to go.

Throughout the years, my grief has become like an ocean,

Full of thoughts and emotions.

There are times when the tide comes in and I can feel happy and glad.

There are times when the tide goes out and I simply feel lonely and sad.

 

Still, my love, I have wonderful, treasured memories of being with you.

Now, during good times and bad,

Remembering you is what helps me to get through.

Also, and never forget, I’m always connected with you through our song.

Whenever I hear it, it’s as if you are with me,

Which makes me feel happy, secure and strong,

As if nothing could ever be wrong.

 

 

Love of my life, I love you so

Love of my life, please don’t ever go

I love you only, love, love of my life

Ooh, ooh, oooh …

 

          By,

          Anne K. Abbott

 (Lyrics by Frank Zappa and the Mothers of Invention)