Loss of Privacy, Loss of Time

Saturday, February 22, 2020

Hello to all,

It’s been a while. As Howard and Kevin said to me last week when I was at GF Strong Rehabilitation Centre, “why haven’t you published to your blog in a long time?” I don’t have much of a reason except for writer’s block and a bout of depression.

I started a blog post last summer but never completed it. I wanted to add more but I just couldn’t deal with things.

Here’s what I wrote last summer:

Loss of Privacy. Loss of Time

It has been quite a while since I have written anything. It has been quite difficult. My private time and quiet time are at a minimum and I am quite worn out. I will try to explain…

There are many things I miss in life as you can imagine. I won’t even try to touch on them. But, recently my “alone time” or lack thereof has worn me down. I am really missing those few minutes alone to gather my thoughts and catch up internally to continue my day.

You probably don’t think about it but you all have those moments, minutes and sometimes hours on your own where you can think about things, have some quiet time, do the crossword or sudoku (yes, I’m bragging – I did them all the time), check or send text messages or do any of the mundane things you do on your own. I know you don’t think about it but those few moments you have on your own in the washroom are moments where you can catch up with your own thoughts. Or standing in the shower with the water running over your head and down your back while you prepare for the day. Even more, when you’re driving somewhere and listening to your music or the radio or a podcast or anything else on your own. It is those little moments that you get to regroup and face the day.

With my new life I don’t really have those moments. Going to the bathroom is a major event in my week. As a matter of fact I only go 3 times a week – unless I have an “accident”. And that is something that is terribly embarrassing for someone of my age. It is not an “alone” time at all. Same as those few moments in the shower. I never shower alone anymore. At one point in my life that was very exciting. Now, for obvious reasons, it is not.

I drove 106.4 km to work and back. Yes, I knew the distance down to the decimal point! And I even knew all the different routes to take depending on the time of day and the weather. My record was an hour and 5 minutes. If you think about the 8 km or so I did on city streets you would realize how fast, I was going ;-). But what I miss is a chance to sit on my own, think my own thoughts and listen to what I want to listen to on the radio – or nothing at all. Now, I never travel alone.

Even checking or sending a text is a public event. I have to use my head array to use my phone and it clicks and beeps as I work through messages or anything else. All my texts are sent using Siri, so everyone gets to hear what I am sending. Unlike you, I cannot pick up my phone at the table and quickly tap something out. Just to check texts is an event everyone notices. And no, I cannot sneak out to the toilet to check my phone. As a matter fact I will never “sneak” off to the toilet again.

My days don’t really start until 10 AM when my service leaves after getting me up, showering me, helping me go to the toilet, dressing me, shaving me and feeding me. I am not complaining about my service. The group that comes in on a regular basis are phenomenal. Thank God for social medicine. We shiver thinking about what may have happened to us if we were Americans…

It is not like the old days where we could sit, have coffee and breakfast together, read the paper, check our email and messages and watch the news – all at the same time. And all of this would be done before 8 AM. Then I would have the whole day to devote to other things.

My days end at 9 PM when my incredible service returns to put me to bed. No more going out late to a movie, a show or a hockey game without arranging private help at my own cost. No more staying up late to watch a show and have a nightcap. As I say, “that ship has sailed”.

So, my days begin at 10 AM and are over at 9 PM. In those 11 hours I have to do everything I would do in 15. And, on top of it all, find a few minutes for private time to catch my thoughts, listen to music or the radio, read the paper, do emails and messages and everything else I would do before 10 AM and after 9 PM and everything in between. And amongst all that time I have to find the private time to catch up in my head and deal with my life.

I know this is a bit of a rant, but it’s been a struggle trying to find that happy medium between being with people and being alone. Too much of either and I go to the dark side. Or as my friend Tim says, the black dog comes to visit.

Once again, I have to thank Isabelle for all her love and support. She has been struggling as much as me. Trying to find her way in our new lives together. We keep working forward and slowly progress as we discover what does and doesn’t work.

And finally, I would be remiss not to thank each and every one of you – my family and friends, near and far who keep helping make our lives bearable and livable. I keep trying to tell people that “F2F” – face to face works the best. We have spent a lot of time with our family and friends in the efforts we have made in the past has paid off in spades since our injuries. It is the constant support from everyone that really helps us through the ups and downs of our new lives. Thank you.

That was my view last summer. I can’t say my life is changed at all. But I am trying to find a few minutes of peace during the day to gather my thoughts. It is a more difficult thing you would think. It is hard to withdraw for a few minutes. Rolling away and sitting by myself is akin to you going to the bathroom. It’s just hard for people to wrap their heads around it. They quickly run over and ask if I am all right. They don’t understand that I have gone to the bathroom to check my text messages and email or whatever. Again, something I must get used to.

A quick chat about feeling alone in crowds. Most wheelchair people will agree that when you are in a wheelchair you are always at the wrong height. When people sit down, they are below you, when they stand up, they are above you. When we come to a table, we do not fit underneath it properly or, in my instance, not at all. The hardest part is after dinner when everybody leans forward and puts their elbows on the table and starts to talk. I become very isolated because I am far away from the table and start to be ignored. It’s really tough when people sit around the table with the common bowl of snacks, for instance 1 of my favourites – potato chips. People lean in and feed themselves and then give me a chip or two. They are good at the beginning, but I soon fall off their thoughts. It is really tough when they take 3, 4, 5 or even 6 handfuls of chips and I only get 1 or 2 chips – not handfuls. I am not criticizing anyone; it is human nature. People do it without thinking. And then I sit and watch. Sometimes I just roll away and “go to the bathroom”. Isabelle is very good and we each have our own bowl so we each get the same amount. We had this discussion a long time ago and this works out the best. Just another piece of life living in a wheelchair.

Like many who are disabled, depression is a tremendous problem. The loss of being able to do so many things is sometimes overwhelming. Having to depend on people is even worse. It is tough for people to give up a large part of their lives to help someone like me. Everyone starts off well-meaning but then they grow tired. They cannot sit and watch television with me like before. I cannot get up and get another drink on my own. I cannot control the television like other people. If we sit quietly to read, I always need someone to help set up my equipment. There is always something I need, and it interrupts other people’s lives. I don’t blame them. I would find it extremely difficult to stop what I am doing and help someone else for the smallest of requests. It would be extremely hard to be forever interrupted. And then during all of the work while I sit and wait. It is tremendously painful for everyone – including me.

But let’s move forward and talk about the good points in my life. My family and friends support me more that I could wish for. I am truly blessed. The best part of my life is Isabelle. She has the patience of God and does everything possible to keep our lives going. I know it is aggravating and fatiguing for her to deal with me day in and day out. We miss the quiet time alone, just the two of us. If it is just us, Isabelle must do everything for us. Tiring and aggravating. If we have someone to help, we lose that quiet time where we can talk about personal things. There isn’t any solution and that is what makes the future look so difficult. It is hard to wrap our heads around it. We continue to struggle with this and move forward.

The other part is that I somehow managed to keep very busy. I still do two to four presentations a month. It is very tiring but also very rewarding. From the elementary school students to senior groups I have enjoyed meeting each and every one of them. It is always fun to connect with them, particularly after my talk when we meet one-on-one.

I keep trying to find new ways to move forward. I am seriously looking at working with the Rick Hansen Foundation as a Certified Accessibility Specialist. In this role I would work with existing buildings, public and private areas and new construction on ensuring the world is accessible to all. With new federal legislation coming soon this will be a huge area where everyone must take responsibility in making sure people with all disabilities, physical, sight, hearing etc. will have the opportunity to move around freely. It is an opportunity to get involved and make a difference. If there are any civil engineers out there who need and accessibility specialist, I’m your man!

This blog post is almost 2000 words and that is enough. I have much more to talk about and I will try to post more often. Thanks for making the effort to read this far.

-Jim