Not long after Susan’s diagnosis, she told me that she now felt like dying was her new job. We had been discussing her giving up teaching, and her research project, and a writing project, and the things that she was working on at the time. And her future plans and goals and dreams. And like everything she does, she went about the business of doing the best she could at her new job.
But dying is hard work. Susan said that to me at the end of summer as we were sitting in her backyard. And she had been talking about her feeling pretty good but being aware of things to come. And how the urge to become attached to living was alluring. And the effort required to hold onto her positive attitude and cheerfulness. And thinking of the people in her life that she loves and cares for, her wanting her death to be something that they can use to enhance their own remaining time. She started to cry a little.
A few weeks ago I arrived home to my flat after teaching a night class. It was late and I was tired as I had also taught a morning class. I’d been working feverishly on a research application. Cheryl (the mother of my sons) had been away for two weeks so I was a full-time single parent in that time. Susan was away visiting her son. The fatigue from my day felt normal. I trudged up the stairs after a 16-hour day like I was a normal Joe coming home to a normal life. Working, dreaming, parenting, commuting. Normal.
Yet, I have this aspect in my life that is normal and not normal at the same time. Susan’s terminal illness. And there have been times, although not recently, where I imagined the whole year has been one long movie script that I am writing or reading or directing. And as the director I’d like to do a rewrite. Write the cancer part out of the script. But the Producer on the movie says no, that’s not possible. I’ve been passing through my normal days doing my best to be mindful and grateful. And I have had many of those moments. And it has been surprisingly simple to get caught up in my normal flow of life, to feel like a normal Joe. I feel a large part of that has been Susan’s attitude, approach, demeanour, love, and kindness that has reassured me that one, she’s okay, two, she’ll be okay, and three, I’ll be okay.
Occasionally I’ll wonder what it would be like if Susan was angry or in denial or depressed or all three! Maybe she takes to smoking weed after some cannabis crusader convinces her that in addition to curing cancer (all of them, by the way!) it promotes hair growth and makes your boyfriend smarter and cuter. What if Susan was struggling? Like really struggling? And those of us around her needed to seek help so we could help her. Is there a death-anon, like al-anon, for people whose loved ones are dying but won’t admit it? And how would trudging home from work to be faced with that situation feel? By that I mean, get home, and make sure that supper gets put on the table, that homework is attempted, then invent something to send for the next day’s school lunches, and then go to a death-anon meeting to (hopefully) help a loved one in distress. And how would feeling helpless infect my own grieving and sadness? And would it trigger other aspects of my own depression and anxiety? And would that make my relationship with Susan even more strained and difficult on top of her denial and anger? And so, yeah, when I think about how complicated being in love with someone who is terminally ill might be, I look on the bright side and suddenly feel grateful. I might be directing a movie script with a sad ending, but at least the lead actor is a joy to work with!
Susan has made dying normal. Susan has made being a loved one of someone dying normal, simpler, maybe even easier now that some time has passed. And a part of me wonders if she is doing all the work. Is she making it easier for all of us around her? And in doing so, is that making it tiring for her? I feel like I am getting off easy in this journey. And while I appreciate the load lessening, there is a part of me that wonders if I am doing my fair share of the navigating.
I started thinking about rituals and life transitions and my son’s high school graduation came to mind. It was a fairly significant milestone, and if we had lived closer to our extended families, his cousins, and aunts and uncles, and grandparents might have been around, and there would be cards and congratulations. Everyone would be patting him on the back and wishing him luck, and maybe offering advice. My son would most likely be a bit embarrassed at all the attention but appreciate it nonetheless. He’d listen to the advice with one ear, open the envelopes to check for the cash, and go out and enjoy the fact that he was done with school for now. He might have some doubts and concerns about what comes next, he might feel uncertainty mixed in with the anticipation. I am pretty certain that the one thing he wouldn’t be doing was taking time and energy to make sure the people around him felt safe, and secure, and assuring them that he was okay.
Sometimes I think of Susan as a group leader taking a bunch of us on a trip to Tibet. She speaks the language but none of us do. She has to shepherd us along, do all the talking, all the arranging, ordering the food, getting us to the correct train station. Plus, she has to take care of herself while she is not feeling physically well. The rest of us have no cultural references that translate well from our own lives. Kindness and politeness help us, but language and strangeness complicate matters. None of us are capable of managing on our own. We are like the daycare kids clinging to a tether as the caregiver leads us to play in the park.
Then I was wondering what it would be like if as a society we approached death like we do a graduation. Maybe we get an invitation in the mail announcing an impending death except we don’t have to buy a gift. And it becomes normal. Not awkward, not scary, not weird. Then all of us who surround a person who happens to have a terminal illness are standing on our own. Treating an impending death as normal is more than “staying strong” or being stoic. It’s about being there. I’ve written about this before. But I feel that because we live in a death-phobic culture and don’t have any practice with death and dying, that the onus is now on us to rise to meet the moment. I feel it is our responsibility to prepare ourselves so we can be independent and offer help to the one who might need it more, or at the least, be a zero sum in the equation so as to avoid being a burden.
I am navigating a special journey, one fraught with hardship and joy, that will test my heart. I was not prepared for this change in my life plans. I’m fortunate in that I spent a lot of time and energy in cognitive behavioural therapy (CBT) that has allowed me to process a lot of things and helped me better understand who I am. And this has allowed me to feel solid throughout the past seven or eight months. But I have also had to evolve both spiritually and emotionally. I had to catch up on some reading, study up. I’ve also had to look into places in my own heart that were dark and shine a light around in there. And I’m doing that as best I can. I do it so I can be solid and honest with my own fears and worries. I do it so I can face whatever monsters come in the night, but also so I can look forward to and receive new senses of love and light that will also appear. I continue to do my homework so I can remain solid even though I know I will likely crumble from time to time. And just as important, I’ve done everything I can to take care of myself so Susan doesn’t have to do it for me. Even though she is brilliant, loving, kind, and generous, I don’t want her to expend her remaining time worrying (too much) about me in the present moment nor the future. She’s busy enough with her new job.