Living Through the Dark Days

As many of you know the problem with Facebook is that in truth it is “Bragbook”. Only all the good and exciting things get posted. It makes everyone’s lives seem so important and interesting. Rarely does it tell the truth of what is behind all the posts and the things that never get said.

We have tried to post some of the bad with the good, but even that is very difficult. It is easy to gloss over the bad and accentuate the positive. After all, we want to put our best foot forward when we present ourselves in public.

In truth I have been struggling terribly for a long time. Life as a quadriplegic is much more difficult than any of you can or will ever imagine. In the next few pages I will try to explain to you and to myself what it is like to live this way.

I think the easiest way is to start with today – Canada Day – July 1. We woke early this morning, at 5:30 AM. It is our 2nd day back from Toronto. And we are still jetlagged.

Isabelle got up and decided to unpack from the trip some more, and then went to make coffee and cursed a blue streak when she realized one of my care workers had turned the coffeepot off and the coffee coming out was cold. It takes several minutes at least to warm up the machine for another pot. At that point she went off to work on her upcoming trip to Whistler for yoga, do emails and other general work as well as have breakfast with an espresso. I lay in bed and watched useless TV until 8 AM when my care arrived. Isabelle then went upstairs to work on her plan teach yoga this week and get dressed. My care was completed at 9:30 AM. She then came down and off we went for a walk. She was happy that she accomplished so much so now she could spend the day with me.

The problem is I spent 4 hours not accomplishing anything. I still have a list of things I want to do including emails, phone calls and writing things like this. So, it’s a huge problem as Isabelle has plans to “spend the day with me” while I have not had any private time to do the things that she just completed doing. This conflict of her wanting to spend time with me, and my desire to spend some time alone doing the few tasks I can do often result in bickering and fights. I need the private time that everyone else has but I don’t have the time to fit it in. This is always an issue no matter who is here. Remember, you get up early – or late and can multitask without thinking. You can have breakfast, coffee, watch the news, check emails, send texts, read the paper and talk to your partner all at the same time. I can do one at a time but not all at the same time. You can send emails and texts privately, at the table with friends or casually step away or excuse yourself to the washroom to do things like this. All my phone calls, emails and texts are done by voice so everyone in earshot gets to hear what I am saying and thinking. I can’t step away to “go to the washroom” because I will never use the washroom again. If I walk away people think there is an issue. And to top it all off, I must hope that my voice software – whether it is Siri, Dragon NaturallySpeaking or any other voice software – interprets what I say properly. And no, I can’t add all those fancy emoji’s like you do. Frustrating beyond belief.

Unlike you I do not get the private moments that you enjoy. Whether it is having a shower, brushing your teeth, getting dressed or even going to the bathroom I do not get to do any of that alone. My privacy in these instances has disappeared. I do not get the moments where I can drive alone in the car with my own private thoughts. I can rarely go out for a walk on my own to gather my thoughts and feelings. I can hardly sit in another room on my own. We have just about completed a 3rd room on the main floor that I can use. Right now, I have our old living room/dining room which is now my bedroom and computer space. My computer is in the corner against the wall. Again, I cannot take my computer to the table by the window or sit on the couch (not that I can sit on a couch anymore) to do emails or anything else. I sit in the corner with my back to the world. The other room is our kitchen/family room. I can sit there and watch TV and if someone sets up my iPad I can read. But it is the public area so there is almost always someone there. I can’t go and hide in my bedroom, take a break in the bathroom or even find a private place. Hopefully the 3rd room will allow me to sit somewhere inside on my own with my private thoughts. These small moments of privacy are important to you whether you realize it or not. I never get them anymore. I sorely need them.

As much as I want the privacy I want the human touch as well. When people come over everyone gets a hug except me. I can’t blame you because in my suit of Armour it is near impossible. I don’t get those few moments of a private conversation when people come and go. I can’t move around the room so conversations flow around me. I am at a different height to everyone whether sitting or standing so I am not able to carry on a quiet conversation with others. I am part of the group but still on the periphery.

Eating – or being fed – can be its own article. Suffice it to say I get fed what people want to feed me at the speed, selection, portion size and every other little option that the person or people feeding me choose. Normally I finish last, so my food is always cold. And don’t get me started about the common bowl. It is so frustrating, embarrassing and humiliating that I try to minimize the times I eat out in public. It is hard being stared at all the time. And now I have to eat less, baby portions, because I don’t move and I am getting terribly fat. Again, I stick out in 2 different ways.

I know people are doing their utmost best to be loving and supportive

My day ends at 9 PM whether I like it or not. My service puts me to bed and I can read or watch TV. Did I mention how bad TV really is. Netflix sucks too as does YouTube. And I can’t listen to any more about Donald Trump. The strange thing is we have 6 more years of Donald. Get over it people – he will be part of our lives for years to come and his actions and deeds for generations. (Of anything I write in this article, people will remember this the most. Perhaps I will write another article about it.)

It sounds wonderful to read all the time, but it gets tiring. Try reading a newspaper on your iPad. And don’t zoom in or out. Just scroll left or right, or up or down, depending on the newspaper. Yes, it is terrible on the eyes. And try reading a magazine where all you have is the opportunity to look at one-page at a time. No more zooming in or out or scrolling up or down on a page. Just stare at it and hope it doesn’t get too fuzzy too soon. Like I said, tiring.

It’s two days later now. I was worn out just writing what I wrote and yesterday, July 2, wasn’t a good day either. Now it is the evening of July 3 and Isabelle is out at yoga and I have a few blissful hours on my own. I have music playing in the other room that I can sort of hear. I can’t play it here because it affects my dictation software.

Back to July 1.

Once again, the bickering started about how hard Isabelle is trying and how depressed I am. Things rapidly went from bad to worse as a stress of life overtook common sense, actions and language. No, no one was physically hurt. But emotionally we are both deeply wounded.

Isabelle is doing everything she can to try to make our lives better. With my struggles dealing with being a quadriplegic it hasn’t helped. She needs to get away but that presents a whole bunch of other issues. Now, I need a “babysitter” while she is gone. Everyone who has come has been wonderful, but they are on their days off or vacation and want to do that sort of thing. I am trying to live a life and the two clash sometimes – well, almost always. By the time Isabelle gets home I am normally exhausted, frustrated and jealous that she gets a break and I really never do or will. I am stuck in this chair or my hospital bed the rest of my life. Shopping for furniture is almost hysterical as I will never use it the rest of my life. But I try to make it look good and be comfortable for Isabelle and our guests.

Now, please keep offering to come and spend time with me. But please understand that I am living my life here and will need to do stuff for me. I know everyone offers to give me time and space, but it is difficult as they want to do things and spend time with me too. In many ways I am blessed too many ways. Don’t give up on me. I am really struggling, and yes, I need your help.

On July 3 we are slowly moving forward. Once the frustration and anger died down we managed to start communicating again and tried to understand each other’s situations. That is why I am home alone, and no one is here with me. I will be doing a lot more this as my health and ability has improved significantly over the last 18 months. I will still need help so please keep volunteering and offering to go out with or come over for dinner. I do crave the human touch as much or more than everyone. Apparently, I am the true extrovert in the family and love talking and interacting with virtually everybody. But I do need the time alone to recharge, gather my thoughts and write things like this.

As many of you know I have always said I have 2 challenges: accepting the fact that I am a quadriplegic and try to make Isabelle love me no matter what. I am failing so terribly at the first that I am destroying the 2nd.

Thanks for reading this. It has been extremely difficult to write.

We are hanging in there. But some days – just barely.

Jim