Grieving By Numbers
My wife, Helen, died last summer after two years of treatment for brain cancer. This is my attempt at trying to make some sense of things. I don’t think I’ve succeeded.
Whenever my wife corrected one of the many errors I’d make throughout the day, I’d often remark, “my mistake”, to which she would automatically reply in the deepest voice she could muster, “Your mistake indeed!”. This little piece of theatre, repeated dozens, if not hundreds of times by us over the last fifteen years, was stolen from the 2001 comedy Zoolander where the villain Mugatu spits it out at his poor minion.
Why did we adopt this particular vignette? Why not? Couples do stupid, funny things. We had (as you probably do) dozens of little quirks known only to us. Meaningless but ours. Part of being human.
On reflection, this is the fifth thing I’ll miss most about Helen. Not the big romantic gestures, just the moments of small intimacies — a hand on the knee while driving, a song lyric hummed at dinner, or the micro-performance of an old comedy played out every time I mixed up the tea or forgot to put the washing on.
Wait — the fifth thing? Have I made a list of grief? Yes. Yes, I have. Coping mechanisms are important. We make lists to organise unclear thoughts, to make physical the ephemeral. We make lists to avoid dealing with the consequences of still being here. I have lists, tables and schedules aplenty.
For instance, since Helen’s death, I’ve compiled an informal list of the things that unreasonably annoy me:
- “How are you?” accompanied by a sympathetic head tilt. (Honestly — what do you expect me to say?)
- Going out with friends (the guilt).
- The rest of the world going about their business as if nothing has happened.
- Not going out with friends (the loneliness, the self-pity).
- Any and all dealings with bureaucracy including but not limited to banks, utilities, insurance companies, funeral directors and the fucking DWP.
- My three children, constantly, and then myself again for getting annoyed at them.
This focus on lists has made me think more than once about the facts and figure associated with dying and with grief. We’re bombarded with numbers and risks. Everything causes cancer. Some of the same things also cure cancer. We have average life expectancies and insurance premiums to match. The stock market and our wealth move up and down. House prices are still the topic du jour at middle class dinner parties. And elections and referendums — of which we have all surely had enough — are a feast of statistics. Can we make sense of the business of living and dying through numbers? I’m pretty certain we can’t, but the rest of this article is my attempt at trying.
It started two years ago. A glioblastoma, as I now know, is the most common brain cancer in adults but still, luckily, not that common. About 3 in 100,000 will be diagnosed a year. And of those there’s a two-year survival rate of about 5%. That means that in Cardiff, where I live, each year about 10 people will be diagnosed and at least nine of them will be dead within two years. This is incredibly bleak, but on hearing this news my first instinct was to try to understand why do the 5% sometimes live for longer? (Actually, this is a convenient lie to keep the flow of the article — my first, second and third thoughts were all much darker).
There’s a useful area of statistics called conditional probability. It can seem counter intuitive sometimes, as with the famous example of Monty Hall and his game show. In essence, the host of the game show, Monty Hall, allows you to pick from one of three doors. Behind one of the doors is a sports car and behind the other two are goats. After you make a pick, Monty removes one of the other doors and allows you to change your pick. Should you do it?
The answer is always yes because Monty has some extra information that you don’t – he knows what’s behind all three doors and will only ever remove a door with a goat behind it. The probability changes from 1/3 to 1/2. Before you choose a door the probability for each door is 1/3. After you choose, the new information means the probability gets updated to 1/2.
Similarly, with things like disease or risk, we can use conditional probabilities to help improve our accuracy. If a mortality rate for a particular disease is 20% then is that 20% for everybody regardless of age, health, symptoms etc? Probably not, right? If you’re older, or already ill, or had a difficult surgery then you’re more likely to get a worse prognosis. We were somewhat cheered that Helen was in great health, under 40, had a perfect surgery and was starting chemo and radiotherapy bang on schedule. Surely all this meant that we’d be at the far end of the distribution? The 5%. The tail of the graph that stretches out to three years, five years, ten years…?
The statistics didn’t stop there. Early on we also had the option for Helen to enter a medical trial. The expected outcome was another two to three months of life. The side effects were potential loss of vision. Quite the decision to make.
Medical trials are fascinating. They are often double-blind and use control groups. This means that on a trial, some of the participants of that trial won’t actually be given the drug or treatment that is hoped would lead to an intervention. Instead, they’ll often be given a fake, called a placebo. The placebo recipients are chosen randomly and are known as the control group. The double-blind part of the study means that neither the participants nor the people running the experiment know who is in the control group and who is receiving the actual treatment.
This seemingly over-the-top procedure is a result of hundreds of years of post-enlightenment thinking and scientific method. It’s been found that when people know they are receiving a treatment, they often report better symptoms, regardless of the efficacy of the treatment. A sugar pill can make you feel better if you think it will make you feel better. And interestingly, a sugar pill presented via an injection or in an official looking packet will make you feel more better than a sugar pill from an unmarked bottle.
Homeopathy, acupuncture, energy bracelets — these are all extravagant forms of sugar pill. They contain no active ingredients, however the ceremony, the belief, the expectation that something may make you feel better has power. There’s a fascinating area of medicine called epidemiology that studies this phenomenon.
We decided not to go ahead with the trial. We were probably better qualified than most to make a decision based on the numbers, but emotionally? How can one begin to think about trade-offs like your vision versus some extra months of probably poor-quality life? Is anybody qualified to think about that?
Ultimately, the numbers, the statistics, they affected nothing. Helen was one of the 95% and passed away almost two years to the day from the start of her symptoms. She was first ill on our son’s birthday in July 2017 and finally died the day before his birthday in July 2019. Of all the days in the year, did it have to be that one? No. Random chance made it so, nothing else.
What the grieving want to know is how long the grief will last. And will it decrease linearly — is there a point at which my sadness will cross the x-axis and I’ll wake up feeling fine? (I hope not — that sounds like forgetting).
Or is grief more like a sine wave, a tide ebbing and flowing from day-to-day.
Or is grief more like a random distribution that spikes according to some unknown formula? Some days bringing highs or lows punctuated by a mish-mash of good, bad, indifferent and so on.
Is grief random noise or does it alter according to some hidden signal buried deep in the psyche?
George Box, a famous statistician, said “all models are wrong, but some are useful”. A usefully wrong model is the Kubler-Ross stages of grief. It suggests that when you grieve, there are five different stages that need to be dealt with. Denial, Anger, Bargaining, Depression and finally, Acceptance. There are other similar models that extend and alter the model, but this is still the best known.
And it feels innately correct to me — personally, in the times I’ve experienced grief I’ve moved through each of the different stages. Sometimes moving through them in order, like steps in a project plan. Sometimes (lots of the time) circling back to denial until I walk past a shop and see a dress or a bag that Helen would like and as I think about buying it or texting her, the full awful enormity of her death hits me again. Move straight to depression. Do not pass go.
Do I want to reach acceptance? Is it healthy to come to terms that the person I cared about most in the world, the person I’ve spent the last twenty years with and would hope to spend the next forty with, the person who I can share stupid jokes, my most intimate moments, hopes, dreams, worries, regrets, this person is gone, forever? I don’t know that I will ever feel ready to accept this.
Looking at the numbers, writing this article, sharing my grief: these are all ways of coping. They are not perfect, but perhaps nothing can be. This focus on numbers is a search for exactness in an inexact world.
I will not share the other things I miss about my wife. They were ours. Now they’re mine. And they’re all I have to buffer me against the next wave, the next spike, the next time the slope of my particular graph rises and then leaves me helpless.
