Warning: This is not a fun post to read. You may wish to consider not reading it.
When you watch your husband waste away before your eyes over the span of a mere nine months, does anything really matter anymore? I’m not talking about the big things, like the kids (or new floors. Duh. That’s a no brainer), but things like, well, work.
With the exception of a few brief periods of time over the last 23 years I have always cared about work. I am good at my job and I have always worked hard. Regardless of whether I was on the road or working in administration, I have always cared about doing a good job. I have always felt like I was making a reasonably valuable contribution to society at work, and even in my private life I have always cared about helping others. But now I find myself having a hard time finding the heart to care about who gets which course, or whether or not this person or that person responds to my email on time in order to take advantage of opportunities they are being offered. It just seems so damn insignificant.
I know that’s horrible (and needless to say I feel incredibly guilty about it) because it is actually my job to help people get the courses they need to advance their careers. But right now I just kinda sorta don’t care. Isn’t it enough to just get up and out of bed each morning?
I have no energy left. None. Nada. Zilch. When you watch the person you love most in the world suffer so terribly and then just fade away without a moment of peace in months, nothing else seems important. What could possibly come even close to comparing to that?
Ben’s body was about 150 years old by the time he died. His feet were so swollen it looked like he was walking on two stumps. He had to crawl upstairs. For weeks before he died, every time he closed his eyes he stopped breathing and I sat beside him wondering “is this it?” and often counted all the way to 30 before he gasped for air. When that first started I would shake him to get him to take a breath. Eventually I wondered if I was prolonging his suffering, and I stopped shaking him. I had to just sit and watch helplessly, and wait, and hope. I wasn’t hoping for him to breathe, I was hoping for his suffering to end. He cried and told me that he just wanted to go to sleep and not wake up. He was scared of not being able to breathe, and yet in the end he thought he was drowning. He panicked and begged me to open the blinds so he could ground himself by being able to see that he wasn’t under water. At the very end he called out desperately for me and didn’t even know I was right in front of him. He tried to take off his clothes in front of his his colleagues and friends, and didn’t have a clue what he was doing.
I watched him cry out in pain behind closed doors, and I watched him stop crying instantly when the kids walked in so that they weren’t aware. In the days when he could still get himself up to bed I would often wake to find him rubbing my arm and staring at me, and I would hug him and wonder how long he had just sat there in utter mental anguish wondering what would become of his family without him. He told me he knew that we needed him. That he couldn’t die.
I watched him go from The Titan to a mere shell. I watched him suffer the humiliation of losing bowel control and standing patiently like a child while I cleaned him up and showered him. I watched our little girls glove up and wash the entire bathroom after him. (No child should have to have that memory.) I watched our children as the doctor told them that their Dad had about three weeks to live. (She nailed it almost to the day).
This was one of the rare moments around Christmas when Ben could not conceal his pain from Jaime, and she just leaned in and held him.
A few days ago I asked my doctor if Ben had suffered at the end, when he could no longer hold a conversation but was still calling out for me and trying to “escape” something that none of us could see. He answered “Yes. If you think you’re drowning, you’re drowning.” (and before you get all judgey on my awesome doctor for telling me something so painful, please remember that few people are able to deny me the truth when I demand it. If I didn’t want to know the truth I wouldn’t have asked. He knows that.)
I watched Ben work for his entire adult life to provide for us and our future, and now he can’t even reap the benefits. He will never see graduations, weddings, grandchildren, Iceland, retirement parties or another birthday or anniversary. He won’t be with us in Hawaii this summer. He won’t listen to “The Fighter And The Kid.” He won’t go to another concert and he won’t play his guitars again. I am consumed with guilt for having all these things that he worked so hard for.
I keep receiving cheques in the mail, and often I don’t even know what they’re for. Three of them remain uncashed. I believe they are the last ones, and I am overcome with guilt at the thought of cashing them because I feel like HE worked for that money (or died for that money) and now I “get” to spend it. Sometimes I want to burn them, although I know Ben would lose his mind over doing something like that. I know he wanted us taken care of.
Raegan overheard me talking to Zak about the remaining cheques and she came over to me and suggested (in all her innocence) that maybe I should just donate it all to the Cancer Society. That it might make me feel better. She actually said that it might make me feel better. Sweet girl. I wanted to say “Dad and I donated money every single month to the Canadian Cancer Society since we were about 25 years old, even when we couldn’t afford it, and it didn’t do shit.” Childish, I know. (I didn’t say it, by the way. I hugged her instead). In a fit of anger shortly after Ben died I cancelled our auto donation. As though that would punish someone for not saving Ben’s life. How terrible am I? The only ones it punishes are those with this shitty disease. Clearly I am not rational right now.
My point is this: nothing matters anymore. How can I be expected to care? What could really compare to the importance of all that we went through, that we continue to go through, and all that Ben suffered emotionally and physically?
So I don’t care who gets what course, I don’t care if I have to change offices, I don’t care about what process is supposed to be followed in order to move my own specially ordered desk two doors down, I don’t care who is not getting along with whom, who wants holidays when, whether or not transportation is covered, or that I’m overdue getting my medical exams completed for work. (What good did it do Ben to have all his medical tests done on time every three years?). I. Don’t. Care.
That’s a shitty attitude and is definitely not conducive to doing a good job. I know this. But I ask you… if you lived through what I lived through and still had to deal with the fallout, which I do every single day, would YOU care about that stuff? Would those things really be important to you? If your answer is ‘yes’ then you are a better person than I. Right now they all just seem small and insignificant, although that way of thinking may land me right out of a job if I don’t watch it. I know this, but I can’t help it. I barely have enough energy to get out of bed each day and try to put on a happy face for my kids. How can I care about everyone else?
Do you want to know what I actually care about on this particular day, at this particular time? Today I care about the fact that Jaime has been tentatively diagnosed with gall bladder disease and may have to undergo surgery. I also care about the fact that Zak had a little melt down and accused me of not letting him take over some things around here and be of help. I realized in that moment last night that my attempts at sheltering him are just making him feel like I don’t have confidence in him. Nothing could be further from the truth, but that is how he feels, and much like Ben believing he was drowning, if it feels real then it is. I also care about the fact that Raegan constantly texts me from school with her current exam marks – not because she is so proud of herself (although she is, and deservedly so) but more likely because she doesn’t want me to have to worry about her. She is now apparently raising me instead of the other way around.
So pardon me, but I don’t give a shit about the rules surrounding the movement of desks and key boxes.
I have watched others return to work from horrible losses and they appear to move on just fine. They must be stronger than me. Perhaps I am just weak. But I was not able to save Ben’s life and I was not able to save my family from this agony, and now it just feels wrong to move on. It feels wrong to be happy. And it literally feels impossible to care.
On this day last year My Beloved wrote this (< click there). Today he is dead. I care about that. That’s pretty much all I have room for.