Posted Under: burnout and support
It’s true. Chronic fatigue can help someone with cancer. How do I know this? Until recently, my father had cancer. The battle had been going for twenty years, but in recent months the challenge ramped up some significant notches. Honest-to-the-point-of-raw conversations during this time revealed my father and I had more in common than we could have ever imagined.
Dad didn’t lose his hair. But the last rounds of chemo zapped his energy levels. “I have the wobbles, darling,” he would say. Chemo also meddled with his recall. Until then, my father had close to a photographic memory – so this change was a big deal. And the deal was labelled ‘chemo brain’. Naturally, all this frustrated the hell out of him. But my father managed to make Wobbles and CB sound like left-footed dancing partners he did his best to move about with.
How dare I say: “I know how you feel”? The man was at the dark end of cancer. I only had chronic fatigue syndrome (CFS). These conditions aren’t the same. CFS will never be deemed my cause of death. But I know about feeling wobbly and I know about sudden and dramatic dodgy recall (even though my original memory capacity was far from photographic). I know the frustration of these things. And when they persist over a long period, I know how it reduces your trust in your own ability. I know how these two can undo you.
I apologise while sharing this reflection with my father. “Our conditions are not the same…” But he brushes the demarcations aside and focuses on common ground, which – as it often does – brings us some levity. Even just for a moment.
Losing a love
My father devoured books by both Marcel Proust and Ian Rankin. He enjoyed paintings by Rene Magritte as much as cartoons in the New Yorker magazine. He was absorbed by Saturn’s rings and the birds circling his garden. He avidly supported his local team, the Adelaide Crows, while punching the air for Tottenham Hotspur in the UK (despite this last season, enough said).
But what Dad loved was music. Pretty much any kind, if it was good. Radiohead, Ray Charles, Wagner, The Beach Boys, Bob Dylan, Bach, The Beatles, Miles Davis, Eric Clapton, Gerry Mulligan, Beethoven, Aretha Franklin, Talking Heads, The Hollies. That’s just a taster list. We could go for pages. But a few weeks ago Dad woke up and realised he didn’t want to listen to music anymore. Not a beat, not a note. He was finished with it. Which perplexed him. Deeply.
I venture in, recalling my early days of CFS and how the things I used to love had disappeared from my mojo radar – namely reading and writing. I say to Dad, “At the time I wondered ‘Who am I now?’”.
“Yes, who am I now?” Dad repeats. “That’s the question.”
Together we discovered letting go of old loves is sometimes necessary to discover more about who we really are. So, with some despair, we peeled back our layers and forced ourselves to have a closer look.
The importance of tears
‘Boys don’t cry’ is an unfortunate gender stereotype for a number of reasons. One is because sometimes crying is exactly what the human body needs to do – particularly post-trauma. And this was discussed during my father’s last stint in hospital when he found himself quietly but uncontrollably in tears.
“But I’m fine,” he exasperates. Despite the fact Dad is in hospital and in need of high-grade pain relief, at that moment he is fine. But his body isn’t.
In recent years my father’s body had been through clusters of radiotherapy, an army of chemo sessions, an orchestra of major surgeries (including bladder removal), a herd of sleepless nights caused by a relentless cough, and a mind that insisted on presenting a positive front on every conceivable occasion. Something had to give.
I know about crying. About saying and believing “I’m fine,” while tears stream down my face. In my early CFS days I cried daily in the privacy of my own home. It’s like passing wind (or bottom burping, as I prefer to call it) – something we must do for the sake of good health, but we’d rather not talk about it. And if observed doing such a thing in public, we are mortified.
When my dad found himself crying, it was in a shared hospital room with a retired Maltese fisherman called Frank. That was public enough for him.
“Is it like an outer body experience?” I whisper to Dad. “Like it’s not you that’s crying?”
“Yes,” he replies. “Exactly like that.”
“It isn’t you,“ I say. “It’s your body crying. You body has been through a lot…still going through a lot,” I murmur. “It just needs to release. Good chemicals,” I add by way of explanation.
“Yes,” he nods, pointing his finger to me in recognition. ‘Yes,’ he says again.
The power of the groan
‘Multiple tumours in the spine’ is as bad as it sounds. And Dad’s pain ramped up big time one morning while I was there.
I hit the palliative nurse’s call button like a buzzer on a game show. And wait. Felicity, the nurse, is told 27 times “David Hills is in pain” before she can get to him. She does her darndest that day with particularly bad staffing shortages. Meanwhile we remain in room 151 for what seems like an eternity on a loop.
The day before, Dad and I had been talking about the Buddhist mantra om mani padme hum (something to do with the path to purity). Harking back to those early CFS years, I chatted about my past pseudo-habit of humming ‘ommmm’ for a good long breath. The trick was to focus on the vibration. It had helped a bit.
Fast forward to the next day: Dad is gritting his teeth to breaking point, and his eyes about to pop out of their respective sockets. Felicity is still bogged down back in Room 163. In the next bed, Frank lies in a heavily medicated slumber. He’s been out for hours from the kind of sleep my father begins to envy.
Dad shuffles from bed to chair (with my assistance), then attempts to stand, then sits down again. We both know there isn’t a comfortable position, but the movement serves as a valuable distraction from the pain.
“That’s good,” I pipe up. “Keep moving.” Positive reinforcement seems to help. Then it doesn’t. Dad stops moving and begins to groan. The groaning becomes louder. And loader. The noise could have woken the dead. But it doesn’t stir Frank, mouth opening and closing (like one of his fish) in the next bed.
“That’s good,” I say to my father. “Keep groaning.” The encouragement to groan surprises him so much he stops at stares at me for an explanation. So I say, “Remember what we talked about yesterday, about the om chanting?”
“Remind me,” he replies, shifting his eyes to the floor.
“The vibration chanting thingy that used to help me back with CFS.” I feel like a fool even bringing it up. What do CFS symptoms have in common with this level of pain? “Oooommmmm,” I demonstrate, wondering if Dad would muster the strength to hit me across the head (there was a first time for everything). He doesn’t and I press on, explaining my point – still well within swipe range. “Dad, you are doing that chanting thing naturally by groaning. Keep doing it.”
And so he moves and groans until Felicity finally shows up with the good stuff. Then we wait twenty minutes for the medication to kick in. More moving, more groaning. Whatever it takes.
To help or not to help?
Sometimes health is like that. We do whatever it takes, willing to try anything, willing to listen to whatever codswallop advice any well-intentioned bystander chooses to offer up. Because it might help.
And then you stop.
Right up to his death, my father listened with attentive respect to my fumbled CFS accounts and uncertain suggestions. But when he could no longer concentrate long enough to read a magazine column or watch a TV program, he rationally ascertained that there was no point in living further. He had decided he was done.
But he was still alive. What to do?
I take my mind back to 2003. I am weeping on my bed, unable to read, unable to do anything of any value for me or for anyone. And I see no end to it.
“This will probably sound ridiculous…forgive me, Dad…but it, err, seems your challenge right now is to find peace in this moment.”
Again, he somehow manages to open up to yet another proposal. “Sage words, my darling,” he replies with a nod, eyes-closed.
His was a generous response. It was possible that, if my father had the ability, he would have thrown me in a wheelchair and rolled me out of the place – or at least out of earshot. By that stage, every right thing emerging from my mouth seemed to neatly counter-balance with a real clunker. Half the time it was hard to know which was which.
Dad’s final days, the ones that followed, were far from peaceful. It was mostly hard, but also precious, sometimes even boring. And for all the sharing we had done, he was alone in dying. That was a fact. I could not join him there. And then he was gone.
But we are here, you and me
To do what? Whatever it is, we could probably use some help with it. Or give some help. And by ‘help’ I don’t mean having ‘the answer’, or pretending our experiences are the same. They won’t be, but they can at times be similar. Help can be saying “I get it” when we do. That’s all. We need not feel alone in this. Not while we are both here.