Thursday, April 18, 2019

A Voice, A Visit

Yesterday morning, I awoke, could feel Joe stirring beside me, so I wished him a good morning. We both paused. My voice was back. I'm almost crying at the writing of this. You see I came out of the hospital with a new voice. A weak, soft voice, full of holes, the kind of voice that comes from sickness and ill health, it was a voice with no strength, no power. It has a hospital voice suited to choosing jello or ice cream to nurses straining to hear.

But yesterday morning, my voice, my real voice, came for a visit. I sounded strong, my voice had power and intonation and seemed desperate to tell a story. It was a remarkable difference. I had wondered if it had gone forever. I wondered if I was to be forever mourning its loss.

But no, it was resting too.

It didn't make the whole day. It lasted until early afternoon. Which I thought was a good long time for a visit. It's back again this morning.

It's early but I want to rush out and try it on someone.

But I won't.

I'll be able to use it at work.

There are so many things that illness takes from you. There are so many things lost. But some come back.

Thank heaven's one of those has been my voice.

It's not a pretty voice, or a classy voice, but it's been a strong voice when I've needed one.

And again this morning, it's home.

Wednesday, April 10, 2019

Way It Should Be

We've been at the mall a little more these days. It's one of the few places where I can get some exercise without pushing myself to hard. When we go on weekends, we often stop and have lunch in the food court. I pretty much always go to the same place. The food is good. There are lots of vegetarian options. The people who work their are nice.

So what usually happens is that Joe goes to order his food at one of the other places, he has several favourites, and then when I see him in line, having chosen where to go for lunch. I go to my place. We time it so that I order and pay and then Joe goes to pick it up. It's a routine now, they know both of us. It works well.

A couple of visits ago, Joe decided to eat at the same place so we placed our order with the fellow who runs the place, the same guy I usually order from and give my money to. He looked at the two of us and asked, "Are you brothers?"

Joe and I look nothing alike. Even so we often get this question. I think people see that there is a relationship, a bond, between us and then they try to figure out what that might be. For some reason, they never, ever, think that we are married, or even dating.

The question threw me. I like this place and I like the food. But I wasn't sure what their attitude would be if they had to contend with the actual nature of our relationship. I didn't have time to decide anything. Joe answered quickly, "Hell no, we aren't brothers, we're married, he's my husband."

There was a moment of shock on the faces of those behind the counter and those in the line behind us. It was like they reacted in several ways.

Oh, they're gay.

Oh, the fat disabled gay is in a romantic sexual relationship.

Oh, I don't want to picture that.

But. And here's the 'but' that mattered. Nothing changed. I've been back since. No change. Same welcome. Same sense of ease.

That's the way it should be.

But often isn't.

Tuesday, April 09, 2019

Need

I need so much more from people right now.

One of those things is something I've written about a lot.

I need to be let alone, to be allowed to just get on with my day, to be relieved of the burden of inspiration, to be just another anonymous person in the community. I need to be let alone.

I'm tired.

All the time.

Tired.

The doctor, my blood tests in his hand, assures me that I'm on the right track, that I'm getting better, but that it will be slow. My tiredness isn't going to go away any time soon.

So.

I'm tired.

Just being wears me out.

Doing is another thing entirely.

So.

I'm pushing from the car park to the mall entrance. At the edge of the parking lot the sidewalk slopes upwards to the door. Only a couple weeks ago I pushed up this with no effort at all. Flew up. But now, it's work. I can do it. But it's work.

I'm pushing up, the effort is showing.

My heard is glad, I know I'm going to make it.

Now, suddenly, I'm fighting off help.

DON'T TAKE THIS FROM ME!!!

I NEED THIS!!!

I'm called rude.

I'm not.

I'm just tired.

And I want to get better.

I don't have time to caretake the feelings of those who need me for their own purposes.

I don't want to speak sharply.

But what other way do I have to communicate that in this situation, MY NEED MATTERS MORE.

I am not your teacher.

I am not your random act of kindness.

I am not her for you.

I made it to the top. Victorious.

This was something I had to do to remind myself that I am coming back to me. I'm coming back to strength. I'm coming back to independence. I'm coming back.

Back.

Monday, April 08, 2019

An Odd Conversation

The oddest conversation.

I am sitting in my office at work and a fellow with an intellectual disability pops in and says that he'd heard that I'd been sick. I told him that I had been. He said that he'd heard that I'd been very sick. I told him that was true that I had indeed been very sick. He told me that he was happy that I was well enough to be back at work. I thanked him. Then he said, and I quote, "Just remember, getting sick isn't your fault, everyone gets sick." I asked him what he meant by that, "All people get sick, not just disabled people, all people." I nodded and he left my office. Message delivered.

I hadn't actually thought that getting sick was my fault. Never crossed my mind once. Not once. But since that discussion I've discovered that not everyone felt that way. Any number of people were convinced that my illness had something to do with my disability. In fact, I'm afraid to say that I've discovered most people had made a connection when none existed. In discovering this, I also found that, in some way, people were making this the result of my disability and that in there somewhere was a personal kind of blame.

Not everything that happens to me happens to me because I have a disability. Not everything is related to my wheelchair or my difficulty with walking. Not everything about me has "dis-" preceding it. And that includes my vulnerability to illnesses. I do not believe that bacteria have an address book listing those people who are 'just' targets of their violence.

Yes, I got sick.

Yes, it was serious.

No, it wasn't because of my disability.

No, it wasn't my fault.

I shouldn't have to say any of these things. But I do, and will over and over again. I have spent my entire working life, my entire life as a disabled person try to establish the uniqueness of the disability experience as it's encapsulated within the commonality of the human experience.

All people get sick.

It was an odd conversation with an important message.

I hope to see him soon and thank him.

He taught me.




Saturday, April 06, 2019

Maybe Too Much Information

If on the odd chance you have the opportunity to walk by the bedroom of a couple that's been together for over 40 years and you hear gulps of pleasure emanating from the room. 8 out of ten times on the other side of the door, they're scratching each other's backs. Yeah. Man. Sex is awesome but that itch that's just out of reach - priceless.

Stop here if you are afraid of too much information.

I just want to make a point.

A lot of what I've gone through has been painful. My body hurts as it heals.

That pain.

Constant.

The body.

It's cause.

Or that's how you see it.

But last night in bed, Joe scratched my back and got that sweet sweet spot. My whole body tingled with pleasure.

It felt good.

To feel pleasure.

In my body.

To be reminded.

Of the gifts it can give.

I fell asleep with the hope that the morning bring more pleasure and less pain. It's nice to think that way, like the whole thing might be possible.

Friday, April 05, 2019

The Context of Wonderful

Something quite wonderful happened yesterday. To understand why it was so wonderful, you'll need some context. So here goes ...

Because I have a history of making bad, even stupid, decisions about my health, my initial fall and loss of strength didn't trigger an immediate trip to the hospital. No, that happened on a Saturday and on Monday I was scheduled to do a four day lecture series. I decided that I'd go do that and then deal with whatever went wrong. Somehow, in my mind, the possibility of it getting worse never crossed my mind, I had it that it would go on hold, I'd do what I needed to do, and then I'd get to the health stuff.

Well.

I made it through two days of training. On the morning of the third, I knew I was worse, much worse. The night had not been kind and now I knew I was in trouble. I told Joe that I couldn't do it, we'd have to cancel and go home. I hated doing it, I hated myself for doing it, but I knew I had to do it. The audience had been a nice one, lovely people, paying attention, and asking good questions. I felt I had abandoned and betrayed them. But. I was desperately sick.

During hospitalization I had to cancel a number of trips. It was clear that I had been hit hard by this infection, that I had to rest and take time to get better. It all weighed on me, almost to the point of crushing my spirit. It was like one part of my brain was saying, 'good boy, you are making all the right decisions and taking care of your health and your future,' and another part of my brain was saying, 'you failed, you failed all these people, you let everyone down, who will ever trust you again?"

Then I realized I was fighting a double battle, one for my physical health, one for my mental health. I needed to be taking care of both. And, again, I think I was managing that. Look, I'm back to blogging.

But then yesterday I received an email.

It was from someone who had been at the four day training that had suddenly become a two day event. She was there when I fell ill. She just said that she, and others, had been thinking about me and were hoping that I was doing well. Then she said that she had enjoyed the training, that she had learned from it and that it had been valuable to her. Even just the two days. She'd like to hear me again.

I can't tell you how much this cheered my spirits! I felt that because I didn't make it all the way through I had wasted their time, that I hadn't given them anything. But this was the darkness talking. Here she was saying that what I had done, even in just two days, had mattered. That I mattered.

I don't know what inspired her to write me that note. But it mattered. She mattered.

I wrote he back and told her that she must be the nicest person alive.

She had been there when illness took me from doing what I loved. I had imagined how people felt being abandoned by their instructor half way through a course. I had been wrong.

I got up this morning feeling a little brighter, a little lighter, a little more like the battle is worth it.

Onward.

Thursday, April 04, 2019

For a Day or Two

Spotless.

Uncluttered.

Organized.

I came through the door and almost didn't recognize the place. Joe had been busy cleaning and tidying and it really showed. The place hasn't been like this since, well, never. We don't live like this. We're clean but we're untidy. Books piled on the couch. Papers littering the front room. Dog toys and bits of dog toys hiding just under the lip of the chairs. We live here and it shows. But today it looked like we'd walked into a display unit and that a salesman would come soon to talk us into a time share.

Once in, I sat down in my chair and immediately pushed the button that raised my feet up and I settled in. I asked Joe if he wanted to watch something on television for a few minutes. He was frantic. "No," he said, "I've vacuumed the floors, now I have to wash them, then I have to change the sheets on the bed and tidy up the bedroom." I looked at the floors, they were already spotless. But, in seconds he was in there with the mop washing every square inch.

"I'm making the bed in case you need to be see in there rather than out here," he explained.

When he was finally done I took a look and the bedroom looked amazing. Everything had been organized and dusted and arranged for public view. "WOW". I sad and could see from Joe's face that this was the right response.

So what was going on?

We were going to have our first visit by the home care nurse who was coming to ensure that the healing was progressing. That I was fighting off the infection. That I was getting well.

In Joe's mind, he was going to get graded on a scale that veered from 'loving spouse' to 'slovenly attendant,' and he was determined to pass the test.

The nurse ended up being almost 4 hours late, but she came in and worked with me in the front room, I almost wanted to invite her to glance into the bedroom because it looked so awesome, but I figured that would be weird.

She pronounced me 'on the road to recovery.'

I am now officially on notice.

I'm getting better.

And I live in a very, very, clean and tidy home. (For a day or two at least.)