Thursday, June 27, 2019

The Big Finish (Part 5)

We arrive at the venue to get ready for me to do my presentation. There was so much noise inside of me.Noise, Noise, NOISE. My usual nerves about doing a presentation, things I've never tamed, sat on the jeering section of the grandstands in my mind right along side of the 'you failed last time, you'll fall this time' who had dressed up for the occasion and joining them was the image of a 18 wheel truck bearing down on me. My hands were still trembling.

I watched the audience come in and choose seats, I watched as they settled in place, I watched as they looked over to the presentation table with expectation. My heart had moved to my throat and I could feel it pumping wildly. I looked at the clock, I started in 20 minutes. It was a long 20 minutes and the noise inside just got louder. I know the names to call myself, the ones that really hurt.

Then, suddenly, out of no where I was being introduced. I took a breath, opened my mouth and out of it came a story I'd never told before, it came fully formed, it was shiny with truth and it propelled me on my way. About 10 minutes later I was enjoying myself. By the end of the day, I felt victorious because, not only did I get through it all, the noise in the my head, the jeering had stopped.

We got in the car and I said to Joe, I have my career back. I can still do this. If I can fight off all those demons of negativity today, I can do it any day.

I presented again the next morning, to people with intellectual disabilities, the kindest audiences I have because they all seem to be wishing you well. They participated, laughed and even surprised themselves a time or two.

I was done and all that was left was the going home.

I'm home.

We lost a car on this trip, totaled.

But we lost nothing else.

And for that I'm truly grateful.

Wednesday, June 26, 2019

Then ... BAM! (Part 4)

When we got in the car we saw that it was exactly 800k from our hotel. We hit the road and just drove, didn't stop to eat (I made sandwiches in the car) and didn't stop to pee. We just drove. Then, suddenly, we could see our hotel. We had driven 798k and our hotel was like a beacon in the night. We stopped at a stop light.

Joe screamed, "brace yourself" he had looked in the rear view mirror and saw that an 18 wheeler was bearing down on us at top speed. He took his foot off the break and pointed the wheels towards the other side of the road. Then we were hit. The wrenching, tearing sound of metal being ripped apart was accompanied by our jumping across three lanes of traffic and landing near the ditch on the other side. It was late, there was no traffic so we weren't killed by a car coming the other way.

We sat in the car.

Silent.

I won't get into the details of what happened next.

I don't want to talk, here, about my wheelchair and the problems my disability seemed to cause.

Another time.

In the distant future.

But in the hotel room, when we finally got there, we were both really shaken. I found that I couldn't settle easily into my own body. My hands, which never tremble, trembled. Joe was a mess. The stress of it all hit him.

We had no car.

No transportation.

No way to get to work.

No way to get home.

And no one wanted to help us.

Tuesday, June 25, 2019

First Stop, Second Stop ... (Part 3)

We arrived at the hotel with a day to spare. We had wanted to make sure I had a day to rest before hitting the consultations that I had lined up. I rested by shopping, having ice tea at every opportunity, and simply enjoying pushing myself around. It was great to be away from home, great to be back on the road. I wasn't too worried about the consultations because I've worked with these folks for over 25 years and know them well.

I arrived at work, early, and then we hit it hard. I found myself able to be attentive, listen well, and ask the questions that got me the information I needed. In the interviews with the people with disabilities, I never consult on someone who I've not spoken to or whose eyes I don't know the colour of, we were able to build rapport and speak with each other deeply.

At the end of the day, I felt good. I felt strong. I felt like I had more in me to give. I hadn't burned through all my fuel. The day, then, was a success. Day two there was similar.

We had the weekend off, which we used well, and then I was at another table with differing expectations. On the first day there were a few presentations and then the next on brought on the real work and, again, I enjoyed being there, listening, learning, taking notes, asking questions. It was fun.

I am on a roll.

But next comes two days of lecturing.

This is what I had worried about.

This is what I'd feared.

Part of me just wanted to go home, avoid the situation and simply retire from the expectations that come with the role of teacher, trainer, lecturer. But the car was pointed south west and we were on our way.

Monday, June 24, 2019

How It Goes (Part Two)

After coming out of the hospital, lots of decisions had to be made. In the end we cancelled trip after trip, most with multiple stops, just to give me time to heal. These were hard decisions but the were also the obvious ones, I had to get better.

Going back to work at my job at Vita was joyous. I just wanted some type of normalcy in my routine and work provided that. I settled in and got back into the swing of it. At the back of my mind, though, was the memory of that talk in Niagara Falls, the tongue, the dry mouth, the inability to finish. It weighed on me.

Was this part of my career over?

Was I done with public speaking?

Would I ever travel for work again?

What about all the remaining dates I had in my calendar?

I spoke, often, with my doctor lamenting the fact that my strength wasn't coming back quickly enough and that I was tired all the time. He simply reminded me that I had fought off a major infection and that I needed to give myself time to heal and get well. I knew, instinctively, that he was right. But it was hard to do. My calendar kept setting off alerts on the days that we were scheduled to fly, no fiddling with the phone could shut those damn things off. I was constantly reminded of the places and people I had let down. They had all been lovely, and understanding, and to a one wished me well. But still ...

Then.

It came.

We were getting ready for the road. I would consult for several days and speak on the last two of the days. Again a conversation about my tongue and what happened and would it happen again. Was I going to embarrass myself? Would I disappoint another audience?

We drove away from the house in silence. We both knew that what happened next would determine what happened next.

Sunday, June 23, 2019

The Story and How It Begins (Part One)

I've got to go way back in order to go forward. This is often true in life when we need to self-correct or when we need to see a moment in time in its true context.

For me, it started in Niagara Falls where I had been booked to do a two day training session. I went to do the training knowing I was unwell, but not knowing that I was dangerously so. During the afternoon of the first day something really weird happened. My tongue went rigid and I was talking 'around' my tongue rather than with it. Then my mouth dried up completely causing almost physical pain. I drank water and kept going. I finished the day. The next morning I knew I had to get home.

I slept overnight in my own bed and then went to the hospital. I had a huge infection on my right leg, I won't describe it to you but it was something I've never had before and it looked really weird. I got into the hospital and then in to see a doctor. From the moment of seeing the doctor and being in a ward with antibiotics being pumped into me took about 13 minutes. This was serious.

Nearly a week later I talk myself out of the hospital. No one is doing anything except changing IV bottles. Couldn't I free up the bed and just manage with the delivery of antibiotics at home. The doctor finally agreed but only, and he let me know this, because I obviously had good home support. Everyone had been impressed by Joe's regular presence and his interest in being trained to do anything that they did for me.

I was released to home care with a nurse visiting regularly to keep an eye on me. It was nice to be home but it was exhausting too. Everything was hard. Walking to the toilet seemed like a trek worthy of needing a Sherpa. But I was home and determined.

Later when seeing my own doctor I talked to him about the whole thing but primary in my mind was what had happened with my lecture. The rigid tongue and dry mouth and the fight to speak at all.

My doctor is cool, he doesn't know everything. He asked me if it had happened again since the first time and, no, it hadn't. "It was probably part of the infection, you were really sick."

I knew he was probably right.

Probably.

Monday, June 17, 2019

Straight Beer

We meticulously planned a hotel to stay at that was within walking distance from an accessible, yes can you believe it, gay bar. We seldom get to be in gay spaces any more, most of them are inaccessible in one way or another, so we were excited.

It really did take work getting there, the distance wasn't great but there was a fairly steep hill that we hadn't anticipated. But the drive to be amongst our own was strong and drew us up the hill We made it to the bar and took great pleasure in just going in. The pride flag fluttered above us as we entered and we took it as a sign of welcome.

There was a long bar, almost full of men, our age, sitting on stools chatting with each other, a few were holding hands. There was an aisle that separated the men at the bar and tables along the outside wall. It wasn't a big place. We sat and were greeted by a waiter who seemed to genuinely want to welcome us. We ordered a drink.

Shortly thereafter a group of 6 straight people entered and took a table. Don't ask me how we knew they were straight, they made the fact that they were straight in a gay space perfectly clear as they marveled at their own tolerance. Two of the couples at the bar, who had been sitting closely moved apart from each other. They too, like us, remember the dark times of the not long ago past when being gay was met with violence and being in love could lead to murder. The noise that rose from that table was disproportionate to their numbers. They felt they could take up space in every way they wanted, so they did.

They were only there long enough to down a beer and congratulate themselves.

Suddenly, they were gone.

It took some time but everyone relaxed again. I need to be clear that gay people are not fragile but we have been marginalized and know how to be alert to the subtle changes in moods of gangs who feel free to objectify us into things to be tolerated.

They have so many spaces.

So many.

Is it so much to ask that they be respectful when they enter ours?

From the behaviour of those that intruded, I'm guessing it is.

TELL ME AGAIN ABOUT THE NEED FOR A STRAIGHT PRIDE DAY, LIKE THERE ISN'T ONE EVERY FUCKING DAY OF THE YEAR IN EVERY FUCKING PUBLIC SPACE.

Sunday, June 16, 2019

Straight Strawberry Shortcake

Joe and I sat across from one another on a rare night out for supper. We travel a lot and most people assume we eat out a lot but we don't. We typically have a microwave in the room and make our meals en suite. This gives us just a little more control over our diet and, being vegetarian, allows us to escape the ever present and slightly malevolent pasta prima vera. Friday, though, was special. We were back on the road after my long illness and it felt good to feel strong after several days work. Dinner out was on order.

We were taken in and seated. As the restaurant filled, it filled with couples and with families and with the occasional lone diner. I saw a young couple, maybe in their very late teens, out having dinner. She said something, he laughed and then he leaned over a gave her a quick kiss on the lips. People who noticed, like me, smiled approvingly. They didn't and needn't have noticed.  Beside them were a couple with three kids. Throughout much of the time waiting for the meal, mom and dad held hands, the kids seemed pleased that they had parents who were still in touch, in the exact sense of the word, with each other. Finally, at the furthest table sat an elderly couple. He had his arm around the back of her chair and she touched his face often, gently, as they spoke. It was a warm atmosphere.

Or so I thought.

No one had really noticed Joe and I except for when we were seated and an unnecessary fuss was made about chairs and pathways. Throughout the meal we chatted about all the things that married couples talk about. Again, no one noted two men chatting in a restaurant. We'd finished our meals and then decided that we'd split a strawberry shortcake. We ordered one dessert and two forks. The waitress paused for a second when we ordered, doubled checked by saying, "Two forks?" And we, not thinking about it at all, just said that she had heard us right.

The strawberry shortcake came, it looked like art, for about 15 seconds. Then we both attacked it. We continued to chat and eat and we were about half way in when we realized that we'd been seen. This is, we came to understand, not something that straight men do. The sight of us sharing the dessert, eating from the same plate, both leaned in towards each other as we shared, had thrown a spotlight on us, our table and our behaviour.

We we no longer completely safe. The young man who had kissed his girlfriend, glared over at us and I heard him use the word "fags" to describe us. Others too, were disapproving. We looked at each other in silent signal, and we continued to eat the cake until it was gone. The bill arrived before we asked for it and we took the hint.

We left the restaurant not knowing how the walk back to the hotel would be. Would it be safe? Would we be in danger? We moved quickly and quietly and took a breath when we got back to the lobby.

YEAH, NOW TELL ME ABOUT YOUR STRAIGHT PRIDE MARCH FUCKERS.

Friday, June 14, 2019

Bolted

She struggled to push an immovable chair out of my way.

Let me say that again.

She struggled to push a chair, that couldn't be pushed, out of my way.

That's one thing. The other was, it wasn't in my way. The only thing in my way was her as she leaned down to try to get a chair that wouldn't move to move. I watched for a second. I could feel, without seeing, Joe's eyes roll as he waited behind med.

STOP. I said and she stood up panting from her effort. DON'T DO THAT. I continued. I explained to her that, and forgive me here I spoke as if for all disabled people and I promise I don't do that often. But I wanted the weight of my community behind me on this. "It's not in my way, disabled people hate when people leap into help when help isn't needed. I didn't ask for help, I don't need help, wait til you are asked. You've made a spectacle of yourself and me, everyone's watching. You know disabled people get together and talk about you non disabled sort and we HATE THAT. SO DON'T DO IT."

"I was ...."

"Don't even finish that sentence. Just listen. Don't go to ridiculous lengths to try to HELP when it's not needed. THE CHAIR IS BOLTED TO THE FLOOR. The only thing I can't get by is you, so can we please get by, we just want to get to the bar.

She stepped aside.



Thursday, June 13, 2019

What They Call Me in Canada

We entered Target, and immediately Joe said, "I've got to go pee." We're old men and this is a constant theme throughout our day. I didn't have to go so I wandered around the entrance to the store. Two fellows came in, maybe in their 50's, saw me there, smiled, and said, "Waiting on the wife?"

Now I had a choice.

I could just let it go, I could say that I was waiting for a friend, or I could be truthful. They seemed friendly, but gay people know how quickly friendly can change into hostility. I decided to just be truthful, "No, I'm waiting on my husband."

I had called wrong.

They immediately flared up and I knew I was in a dangerous situation. "Where you from?" I was asked and I said that I was from Canada, that gave them fuel. "You are a country full of faggots up there from your faggoty president right down to you."

"You are right," I said, surprised that I felt less fear than I used to and more courage than I thought I had, "we are a country full of people like me, and you know what they call us, 'citizens' man, 'citizens.'"

A short glaring match.

Joe comes out to their retreating backs. "Do I want to know?" he asked. "No," I said, "you don't."

Wednesday, June 12, 2019

The Words Almost Said

The words formed in my head as I was pushing down a long hallway covered with thick plush carpet. Joe popped out of our hotel room and called out STOP IT'S NOT ACCESSIBLE. My heart sank, I yanked my chair around and headed back to the elevator and to the fight.

At the desk I spoke to a woman about the issue, she tried to find me something in the hotel but there wasn't anything available. I asked to see the manager and she disappears for several minutes. During that time I'm listening to the other clerk call hotels in the area trying to find a room and with each call he is told that the hotel is fully booked. He is unable to find a non disabled women a room, what's my luck going to be with a disabled room? I am now feeling physically sick. I can barely breathe. What are we going to do?

I had called twice on the way to the hotel to ensure that I had the room I booked. I had done everything in my power to make this problem free. My clerk is back and is telling me that I have no room. I ask, again, to see the manager, she goes to get him. I explain to him what happened. He goes to see the room we've checked into and we discover that the first clerk, from the check in, had checked us into an accessible room but had written the wrong number on the key folder and had set the keys up for the wrong room.

He sends the clerk up to check the room we are going to, Joe goes along, I speak to him a moment or two more and in that time I realize he doesn't care about what happened and what the experience did to me. Not once did he apologize for the error, not once did he ask how I was. He made the mistake that the non disabled do in situations like these, he thought that this story began with my check in to the hotel and ended with my having an accessible room. But our personal narratives as disabled and marginalized people runs much longer. This is just another in the endless stories about booking accessible rooms and not getting accessible rooms ... it doesn't matter that this ended well. It doesn't matter because for at least fifteen minutes my guts were tied tight, my breathing was ragged, my heart was pounding in my chest, and my tears just barely held in.

But he was polite.

He cleared up the error.

That's true.

But he didn't care two wits about me as either a customer or as a person.

No apology.

No concern.

Those two things can only tell me that, at this hotel, with this kind of management, there will be no change. Disabled people don't matter here.

You may be wondering what words had been formed in my head ... I was thinking and was going to say to Joe that it was nice to be on the road again. My lengthy illness and recovery has come to the point where I can travel again. I had had a lovely day with Joe, albeit mostly driving, and I had longed during my illness to be able to be healthy and strong enough to do this again.

I'm on the road again.

Where the wheelchair will serve me well, and others, unfortunately, won't.