Saturday, October 13, 2018

Shift

Something kind of wonderful happened on the flight over from Toronto to Vancouver. I've been a wheelchair user for a little over 12 years. While I didn't lose as much as I feared I'd lose, I did gain more than I expected. They never talk to you about that part. I feared I'd lose my ability to fly and to lecture and to make my away about the world. I haven't. I've learned to adapt, do things differently and deal with worries specific to disabled people.

One of the things in the loss column was sitting by the window. I had always preferred a window seat to an aisle seat but my disability forbade it. I simply didn't have the ability to make my way down between the rows of seats and get into that seat. Couldn't do it. So, I adapted, I sat on the aisle. I was good with it, but even all this time later, it was in the loss column.

Yestereday we ended up in the bulkhead seats. This was an accident, we never buy these seats because they are made narrow by having no arms that lift up. There is plenty of room to walk in front of the seats because there isn't a row right in front. We were about to speak to someone when I said to Joe, I'm going to try it. I sat down in the window seat. It was tight, tighter than what could ever be called comfort. But that's all it was. Tight. I did a few exercises with my feet to see if circulation was cut off, didn't seem to be. Joe took his seat.

I remember a time when I simply could not have fit, where it would not have been tight, it would have been impossible.

And.

I was sitting by the window after all these years.

After a half hour of sitting in the seat my body settled in distributing itself into available space. It got more comfortable.

So, I watched us take off. I took bad pictures out of the window. I watched us land.

For now, sitting in the window is still in the loss column but it's also in the maybe one day column. A small but might shift.

Thursday, October 11, 2018

International Coming Out Day

Today is International Coming Out day, which is a day designated to celebrate people within the LGBTQ2S community who have self identified as members of that community. Today Facebook made it an option for those of us who have done so to mark it as a life event.

Event?

Event?

Coming out isn't a singular moment. That is unless you consider the moment one comes out to one's self - the first and most important coming out is entirely silent within but always accompanied by tears or relief or fear or a myriad of other emotions appropriate to the situation you live in.

In this context, Coming Out day is about the day you revealed yourself to the world. I'm sorry, that moment doesn't exist. I don't know a single person within my community for whom Coming Out was a moment or even a day, it was a process. For me I came out when I was 16 to some and then didn't finish until, um, geez, I'm not done.

Because of the assumption of heterosexuality, I have to tell people on a routine and regular basis. I have to be ready every time for the reaction I get. It's never particularly easy. It's a moment of revealing a part of myself that other's often feel they have the right to approve or disapprove. I hate those who respond with approval only slightly less than those who respond with disapproval. It's information, a fact. Facts don't require the gift of approval, they just are.

So, I support anything that raises the profile of my community, and I celebrate those who have come out to themselves and to those in their world. I celebrate the courage it took.

And I celebrate the courage it will take for each of us to keep coming out over and over and over again.

Wednesday, October 10, 2018

Porn Star Dave

The one day, during my time off sick, that I felt strong enough, and motivated enough, to go to the gym was a Saturday. The girls were spending the weekend with us and love to go swimming on Saturday morning and, at their insistence over time, it became a ritual, it's just what we do. So that explains the motivation to go. We arrived and they signed in to swim and I signed in to exercise.

I had finished with the wheelchair adapted machines and then headed over to the cable machine to begin my personalized circuit of exercises. I was working hard, concentrating hard, and constantly keeping my mind on how well my body was feeling. I had been quite sick after all.

I was interrupted by a woman maybe 20 years younger than me. She smiled and introduced herself. I was a bit flustered because this just isn't done. When people are working out, working hard, you don't push into that without a really good reason. But, I'm disabled, people interrupt the flow of my life all the time. I live my life with described audio. So, I stopped and asked her how I could help her.

She asked me if it would be okay for her to take a picture of me. She saw me recoil from her request and then, as they do, started talking quickly. She told me she had a friend who was supposed to show up to work out at the gym and she wanted to take my picture and text it to her with the words, "If he can make it to the gym, surely you can."

Inspiration porn star, that's me.

I was so flabbergasted at the whole interaction that I was left literally speechless. I just said, "Get away from me," over and over again. She talked faster, not in apology but in an attempt to get the freaking picture. She eventually stopped. She went back to her workout pouting.

Now I don't feel safe. I cut out all of the exercises that have my back turned to the gym and only complete those where I can keep an eye out.

I do not want to become a meme.

I do not want to be splashed onto her social media.

I'm sure someone famous said this, "I want to be alone."

It's not a big ask.

Tuesday, October 09, 2018

Update

I am going back to work today.

As you know I've been quite ill and as a result had very low energy for almost 10 days. Getting up this morning was really difficult because I'd had a poor sleep. I went to bed with the feeling of being a child about to go back to school in September. I was excited.

I'm very fortunate that I'm able to keep doing what I love doing. I love the sense of purpose that I get from working with people with disabilities, my team in clinical services and Vita the agency I work for. There is something powerful in having a day full of meaning. Yes there are frustrations and disagreements, but those are usually founded on two people who care clashing over how we can best support one. Clashes aren't to be sought out, but they aren't to be feared either. If the outcome is better service, how can that be wrong?

It will be a long drive down, first day after a long weekend, but I'm even looking forward to that! Just being back in the routine. Listening to the news on CBC, listening to classical music to calm us down after listening to the news on CBC, that's our tradition. But mostly it's the feeling of being, forgive me for my age, back in the groove. Back to real life.

I'm still a bit weak. I'm still a bit tired. But I am healed. So, no more days focused on getting better, the focus now goes to being better. That's sometimes a harder transition than I'd like to admit.

Monday, October 08, 2018

Housecoats

Ruby and Sadie both needed new housecoats. This meant that we got to go shopping and we headed over to the mall. After dining at the food court, we headed on our quest. The first two stores didn't have robes, the third one did. They each picked the one in their size and they put them on. As I sat in my chair looking at them I couldn't really see if they were a good fit or not. I thought both of them looked a bit too small.

They had flung on the robes over their street clothes and while Sadie was still picking hers out, I looked at Ruby wearing her choice.She was struggling to get it to hang right, I called her to me and said, "I'd like to see if this fits properly, do I have your permission to pull the coat from behind you so it wraps all the way around." She nodded. I did and it fit. Next up was Sadie and she had the same problem with the robe not naturally falling over her street clothes. I called her to me and asked her the same question, I wanted her permission to just pull the robe further around. She agreed. In this case, Sadie's was too small so she got a larger size.

I hadn't noticed that the sales clerk was standing off to the side.

She was crying.

I hate to say this, but I think I know why.

Permission.

Consent.

Don't assume you have it.

Ask.

Listen.

Respect.

It isn't hard.

Sunday, October 07, 2018

Thanksgiving

A couple of days ago, I put a message on Facebook: At 13 I thought I'd never be loved. I was wrong. I give thanks for not doing what I considered. People have been very kind in their reaction to this post, many telling me that I matter. The adult me understands this. The adult me understands that everyone matters. But the 13 year old that I was didn't feel part of 'everyone' he felt only that he was the 'only one.' Alone in my thoughts. Alone in my body. Alone in my heart.

At 13, for the first time, I had a crust on a boy in my class. This came as a shock to me. I had always felt that I was different in some undefinable way, but the unknown became known. I liked boys the way boys were supposed to like girls. Flooded with shame I took the secret and buried it deep. It made me an awkward child and socially inept. I was odd. It's hard to pretend to be normal. It's hard to pretend to be typical. It's hard to pretend to be a boy who likes girls. I lived a life of artifice.

And,

of course,

I hated myself.

And,

of  course,

I could see no future.

And,

of course,

I wanted the pain to stop.

I have no desire to talk about what I did then. Because it hurts to much. Even the memories from those times are ones of horror. Maybe 15 years after graduating I drove to the school where I lived in fear every day. I had not seen it since leaving town. Fear of discovery. Fear of hurt. I had endured that school. But when I saw it from the distance of years I was shocked at how small it was. The building stood looking innocent of the things that occurred within.

It was that moment that I began giving thanks.

And,

of course,

this was new to me.

And,

of course,

I began to cry.

And,

of course,

I knew I had survived.

Shame lies to us. It tells us that we are not worthy. It tells us that we are unnecessary. It hands us a means and show us a way to simply stop being different, being outcast, being at all. Shame needs to be silenced.

For those of you, this Thanksgiving,  who give thanks for the breath you take, for the lives you live, for the love you feel. I join you.

For those of you, this Thanksgiving, who give thanks for what you own, inside, rather than what you own, outside. I join you.

For those of you, this Thanksgiving, who give thanks for having the joy of making your way down the road to becoming. I join you.

I will dine with those I love.

That's the miracle.

That I thought would never come.

Saturday, October 06, 2018

The Soft, Deadly, Hands of Dr. Google

So on Thursday I had to go for blood tests. It's been a week of feeling weak. My primary contact has been with my primary health care team. So, oddly, going to get blood drawn was a wee bit of an outing. Rah!

When I was done, I was given a way that I could sign up to get the results on-line and was told they'd be up fairly quickly. They were. I had my blood drawn at 8:30 and the results were back in by 2:00. When I log in I see the tab for clicking on and viewing my blood work results. Alarmingly there is a big pictogram indicating that there was something wrong, or at least noteworthy, in the results.

My heart beating quicker than usual, I opened the tests. A few things were noted at the top. They were things that were a little low, but in reading the numbers I wasn't really concerned because they were just a wee tiny bit low. But then later on in the results, I see that something is higher than it should be, and to me, it looked like a goodly bit higher.

I don't know a lot of the words that were on the results but that didn't matter, I copied the name of the test and the reading that I got and pasted it into Dr. Google. Well, seconds later I wished I hadn't. Dr. Google basically placed a gentle, and surprisingly soft, hand on my arm and told me that I was going to die and that I would have a life of misery while waiting to do so.

I showed Joe what I had found and then started reading to see if there was anything I could do with diet or exercise or if there were prayers I could utter to slow my slow decline towards death. I spent hours. I had drawn up a list of foods that I could have and foods that I couldn't have. I was learning words that I'd never heard of before but I was good with that. I was in full research mode.

Then, my doctor called. His tone sounded casual but professional and he asked me about my infections? I'm thinking "Why are we talking about my infections, which are pretty much gone now, when he must have seen that my blood work had a little symbol, a picture of alarm, on it." So after we discussed that he started talking about my blood test which he said 'looked good.'

He spoke of the lows, I was right, just a wee bit low that should be watched but not really a concern. Then as he was preparing to go, I asked him about the test indicating hi. As he was looking at it on his screen, I could hear him scrolling, I was telling him about my research and my determination to try to alter my diet and what I'd found in my consultation with Dr. Google.

He told me that the number wasn't a concern. To give me an understanding he told me what number would be a concern, it was over 100, I was barely over 5. He then pointed out that the test could be quite variable and went over with my results from my last tests, none of which I'd seen on-line, and yes it had gone up and down and my number was lower than some and higher than others, but no where near the worrisome figures he'd mentioned.

I felt thoroughly calmed down. I thanked my doctor and wished  him a Happy Thanksgiving. We were done and I was fine. I wanted, however, to slap Dr. Google silly, but there is no way to really do that. Getting the results are cool, reading and understanding them is quite a different matter.

My doctor a long time ago bemoaned the use of Dr. Google, and I felt that he had adequately warned us about the dangers of internet physicians. But, guess not. Next time, I'm not sure what I'll do. Will I read the test? Probably. Will I wait for the doctor, the one who spent all those years in medical school, to interpret them? I really, really, hope so.