Monday, March 18, 2013

Dreams deferred: The truth about dying: Part 1

Please be forewarned. I am not dying, but this is a three part posting(s) about death and dying. It could be a long and possibly difficult read to get through. It is one of the hardest posts I've written for this blog. It's uncomfortable and messy but that's ok, the topic is uncomfortable and messy. This is a post written from my eyes, and please understand that it is my story. Anyone who has ever been through this has had different experiences, and I respect that more than anything. I welcome any and all comments, be it positive or negative. Even if this makes sense to just one person, then I've done my job.

It's been five years and three days since the passing of my late partner Rob who died on March 15th, 2008, at 36 years old. I've never shown a picture of him, until now. This is Robert John Robinson, the last set of pictures taken of him in good health about a month before he was diagnosed with Acute Myeloid Leukaemia (AML) - the disease that killed him in five months.

Two years ago, I wrote this about the way I was feeling about his death. Five years later, after that world trip and all the events that have occurred, I still keenly understand that life means experiencing changes, but questions remain. Am I the same guy who wrote that post about new ways but love stays? For a long time I've wanted to lay the cards on the table and talk in a truthful, honest way about death and losing someone you love. Someone you dreamed your whole life of meeting, and when you did, you both knew you'd spend the rest of your lives together. How it truly feels to have that taken away in such a brutal fashion, and the aftermath of what it can do to your heart, mind and body. What happens when dreams and reality come crashing together, like the worst car accident you've ever experienced.

Let me brutally honest from the start: death sucks. It f*cking sucks. It's the worst thing ever, ever, EVER!!!!! Sorry I had to scream that last bit, but holy sh*tsnacks it needs to be screamed out loud. No more silence. Even after five years I still shake my head in shock. Five years, but every once in a while it feels like the day he died.

I've never really talked about this, about what happened before and after his death. The reason it's so hard to talk about is because you're afraid you'll diminish the significance, or miss something out of the story. Plus, the fact of the matter is that events leading up to, during and after the day he died were so...nutty. I'll explain as best as I can. I am making this point VERY clear: this is my story and this is what I saw. His family may have differing accounts but that's their story. In my eyes this is what occured.

Looking back, although I was aware of the situation, I was in this weird bubble. I wasn't quite understanding the significance of what was happening. How could I? I had never been around something like this before in my life. His family, having lost their husband/father/brother/cousin to the same disease as Rob, even some of my own family members may have had a much better understanding of what was happening, but I didn't. I remember one day in particular, about a month before his death, Rob's doctor took me on a tour of the palliative wing and rooms at the hospital. I remember thinking "Wow, it is so much nicer than where he is now, he'll like it so much better up here." Of course now I know why the Doctor did that, to prepare both of us for what was coming - but at the time , not a clue.

The last month that Rob was alive, it just felt that things were moving so fast in the wrong direction. His deterioration was accelerating and I was just not getting it, but on the same token I was completely understanding what was going on. Did that make sense to you? No? Welcome to my head at the time. At work I would go online and read about the warning signs of death, signs that he was beginning to display. Clues like forgetting dates, talking out loud in his sleep, sleeping almost all the time, a rapid loss of appetite. Again, I was so aware but also in complete and deliberate denial - I just preferred being clueless. Between hospital visits and home care, it was mentally taking a toll on both of us but I still kept the game face on. The day I knew I had to stop pretending to be clueless and really face the situation, was on the day I was helping him take his medication. He was at home at this point and I had to learn how to operate the machine that would administer his drugs and saline solution so he wouldn't dehydrate. I was hooking him up to the machine and getting things ready, and then I just stopped what I was doing and looked at him, lying on the bed. He looked up at me, and I could see it, and I still see it clearly to this day. His big, brown eyes, looking at me, through me, in me. A look that said I'm ready for this to stop Steve. He didn't say it out loud, he didn't have to - I knew. I touched his face and I said "I know sweetie", and now even the thought of that look he gave me breaks my heart again, but I WILL finish this post.

Something that isn't mentioned when or if a topic like this comes up, is loneliness. I'm not talking about after someone dies, I'm talking about the time before that even happens. When a loved one is sick and in hospital, loneliness has a way of creeping into your lives. You don't notice at the beginning when you are dealing with the situation at hand, but over time, it makes its presence known. Whether it's a partner, husband or wife, where you once shared a life and a bed, all of a sudden 'boom', you're separated by force from each other. It is a huge adjustment, with false security. Why? Mostly because you aren't thinking about death, you're thinking ok, this is temporary, he or she will be back at home soon enough so stay strong, handle the loneliness and you'll be together again. Ah, the things you tell yourself. I'll never forget this moment. He was not doing well (no surprise, ask anyone who has gone through it and they will say that chemotherapy is f*cking awful), he so was sick from the endless drugs, and just mentally and physically down in general, so I asked if I could get in bed with him. He said yes and I crawled into his hospital bed. Now keep in mind those beds can barely fit one 6'1 guy, could you imagine two? But we made it work and God, it felt so good to just hold him again, even for a little while. It pushed the loneliness into the corner - for a little while.

Hospital life is cruel. Staff do the best they can but it's cruel. For patients, it can be beyond difficult to adjust to hospital life. Trying to rest with blinking lights and noise from the machines keeping you awake. Endless interruptions for blood work and various tests. Terrible food (I would cook at home and bring it to the hospital, and his brothers provided a mini-fridge where we could keep the food right beside his bed). Hospital life drains you. It changes you. It doesn't bring out the life and spirit in you, how could it? He couldn't wait to leave and go home and I didn't blame him at all for those feelings. When discussion came up for bone marrow treatment and he was told it would take him an additional two to three months in the hospital in isolation, maybe more, he did not take the news well at all.

I'll tell you another thing. When he was diagnosed with AML, I knew I was going to lose him. Oh I had hope, please don't get me wrong, but I knew that either sooner, or later, this was going to kill him and I was going to lose him. Mentally battling between denial and acceptance was consistent and constant. That denial I mentioned earlier was a protective mechanism that I used a LOT to handle what was happening.

It was March 14th, and I was getting ready to go to work. Rob's sister was coming to stay with him during the day. As I was kissing him good bye he asked if I could stay with him, and I told him I couldn't I had to get to work but Id be home as soon as I could. After work I met up with my friend Brian and received a phone call from his sister telling me Rob had to be admitted to the hospital. You know that saying: if wishes were horses, beggars would ride. I can't take that day back, no matter how hard I try. He was so past being sick and I could not bear/handle seeing him in that state. Can you believe we even had a fight in the hospital? Typical of us, and yet typical of us we laughed about it and made up quickly. We laughed at how small his hospital bed was and how awkward it was having to use a bedpan. I'm still amazed we found some humour in what was happening. At one point his Mother came bursting into the room, screaming at him: "Robbie, are you ready for God?" And Rob was so typically Robbie with his answer: "Mom, will you keep your voice down?" We all had a good laugh at that. That was the last time we laughed.

Coming up Part 2.

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