It was pouring with rain in Varberg in Sweden on September 11, 2018. When I stepped into the doctor’s office in the hospital’s neurology department, I felt like a soldier heading into battle. Collected and scared at the same time. As ready as a person can be for possibly having their world turned upside down.
After I started to notice my body behaving oddly, I went to the doctor. I underwent some very unpleasant tests that summer. One involved sticking a needle through my tongue; another receiving hundreds of increasingly powerful electric shocks on various parts of my body. I felt more and more convinced it was something serious. I’d googled my symptoms. I knew what the worst-case scenario was, and something in the pit of my stomach told me it was time to prepare myself for it. After a matter-of-fact presentation of my test results, it was as if the doctor took a moment to steel herself, then she told me what she’d hoped she wouldn’t have to: “Björn, all signs point to ALS.”
Three little letters. ALS. The nightmare scenario. The disease the tabloids have nicknamed “the Devil’s disease”. The disease that makes your muscles wither away until your body no longer has the strength to draw breath. Modern medicine has no cure for amyotrophic lateral sclerosis, so it calls it incurable. I told the doctor that I’d read on Wikipedia that you usually have three to five years to live from the time of diagnosis. “In your case, I believe it’s more like one to five years,” she replied.
On a personal level, the news hit me full force. Despair and shock ripped through my innards. At the same time, another part of me remained calm, facing this new reality with gentle, open eyes. Without resistance. I still have that part of me to lean on – the part of me that’s always awake and never fights reality.
The doctor was good at her job and emotionally intelligent. She talked to me kindly and sensitively as I sat there thunderstruck. I tried to hold it together as best I could, since I wanted to record everything she was telling me on my phone, so as not to miss some important piece of information. She ran through what was going to happen next and then I left her office.
My body was shaking with grief when I called my friend Navid. My beloved [wife] Elisabeth and I had agreed not to talk about the diagnosis on the phone, but, rather, to wait until I got home. So Navid kept me company through the soulless, endless hospital corridors, out into the pouring rain and into my car. Once behind the wheel, I felt I could handle the rest of the journey on my own, so we hung up.
The grief was crashing over me like waves. When I merged on to the motorway, volcanic eruptions of sadness racked my body again. I was overcome with unbearable thoughts like, “I thought I was going to grow old with Elisabeth. I’d so been looking forward to having step-grandchildren and seeing them grow up.”
“I thought I was going to grow old with Elisabeth. I’d so been looking forward to having step-grandchildren.”
So I called another friend, Lasse Gustavson. Lasse is like a beacon of goodness in my life. Even on the stormiest seas, by the sharpest, most dangerous rocks, I can turn to him and find the light. And the light is always signalling the same thing in the most convincing way: Everything is as it should be. Always. The universe makes no mistakes. Lasse held my heart until I was seven or eight minutes from home and calm enough to get by unaided. I felt cried out for the moment. Emptied. The storm had passed and my body felt relaxed, my chest open. I wasn’t thinking about anything, just resting in serenity, experiencing absolute mindfulness.
Just as I was about to get off the motorway, something rose up inside me. A wise, intuitive voice spoke to me, bubbling up from the same place it had several times before in my life: Now that my last breath seems to be coming much sooner than I’d hoped, I can calmly take stock and say I’ve done nothing unforgivable, nothing I deeply regret or haven’t been able to put right. I’ll be able to greet death with an open face knowing I’ve lived a good life.
The feeling was immensely powerful and beautiful, almost joyful. And what’s more, it was a confirmation: I’ve always known it’s important to be decent and true.
When I stepped into the hallway, I didn’t have to say anything. Elisabeth knew, just from looking at me, that our worst fears had been realised. We fell into each other’s arms and cried and cried. And it went on like that for a few days. Usually, we cried in shifts: it was as if our grief knew when the other had the capacity to hold and support.
On the third morning, I woke up early as usual and noted that my chest felt lighter. At around 6am, a friend called, so I tiptoed into the laundry room and sat down on the tiled floor to talk, so as not to wake Elisabeth. After a while, she stuck her head in. I looked up. She smiled her soft velvety smile and mouthed a silent “Good morning”. We held each other’s gaze for a long time. I noticed the light was finally back in her eyes. Hallelujah. No storm lasts forever. This too shall pass.
I eventually found a relatively open way of relating to the news of my sickness. It’s hard to say if it was based on acceptance or denial. Maybe it doesn’t matter. Elisabeth and I managed to adopt an attitude that felt sustainable. Neither of us was willing to completely accept the doctors’ bleak predictions as the only possible outcome. We wanted to leave the door open for a miracle. I might be dead before the end of the year, or we might have another 20 wonderful years together.
Even though my psyche and my soul are still in good shape, it’s obviously sad to feel my body gradually give up. Having ALS is a bit like being forced to live with a thief: first, there’s the deeply unsettling moment the thief moves in. The equivalent to this in the world of ALS are the lumbar punctures, electromyography and neurography. Imagine a remarkably large needle, and a lot of smaller needles, in sensationally unpleasant places – often in conjunction with electric shocks and tests that last an unreasonably long time.
You start noticing that things you’ve always had in your home have gone missing. The thief seems to have taken them. One day it’s your ability to do a single abdominal crunch or push-up that vanishes. Another, your ability to run, swim, paddle, cycle, throw, hold or lift. You have to get used to asking for help to cut your nails, tie your laces, unlock doors, make a sandwich, buy petrol, open bottles, peel bananas, squeeze toothpaste out of the tube. And a thousand other things.
Slowly but surely, you realise the thief won’t be happy until he’s taken everything from you. And that you – according to the best knowledge of the medical profession – can’t do a thing about it. Thankfully, there’s someone else in the house, too. My Elisabeth. And she happens to be a modern equivalent of a medieval knight in shining armour, who rides up alongside me in the heat of battle. She opens her visor, flashes her biggest smile at me and says: “Don’t be afraid. I’m here by your side all the way.” Then you just know that however things turn out, it’ll be okay.
“Sometimes I think of the body as a kind of spacesuit we’ve all been poured into. I was given this particular one.”
When Buddhists meditate, they mainly focus on being in their bodies, but there’s a clear distinction: we are not bodies, we have bodies. The Buddha went so far as to say once, “Through this fathom-long body, I have sensed what was never born and never dies.” The inherent nature of the body is to become sick from time to time, to age – if you’re lucky – and one day to die.
At some point during my Buddhist training, I internalised a fairly realistic view of what can be asked of a human body. Sometimes I think of the body as a kind of spacesuit we’ve all been poured into. I was given this particular one. Mine wasn’t as top-notch as some other people’s, so it seems to have worn out a bit faster. That’s not something I can control.
Without knowing it, my life as a monk in many ways prepared me for death. The Buddha emphatically stressed the value of remembering that we’re all going to die one day, and within the forest tradition we took this very literally. We were exposed daily to the realisation that a human life is impermanent and will one day end.
Our monastery was located in a cremation grove, which meant it hosted all local funeral services. At first, the mood at these funerals surprised me. They were so relaxed, people mingled, laughed and drank a lot of fizzy drinks. The only time I saw someone openly crying was when the deceased was a child.
In the afternoon, the relatives of the dead would push a wooden cart bearing the coffin from the village, singing all the way. The coffin was placed on a pyre and the body inside it rotated so that it lay on its side. That was important because, if overlooked, the upper body of the deceased sometimes rose out of the coffin when the wood caught fire. I’m told it has something to do with the tendons.
Sometimes I chose to spend all night next to the fire and the body burning in it, meditating on the impermanence of life and the inevitability of death. These meditations always calmed something restless inside me. They soothed something anxious. I softened, opened up and sort of cooled off inside, in the most pleasant sense of that phrase. It was as though my body recognised the truth when it saw it. And an uncomfortable truth does us good, so long as we stop turning away from it.
When I was younger, I spent a lot of time worrying about various aspects of my physical appearance. But today we have a very different relationship, my body and I. It feels more like an old friend. We’ve stuck together through thick and thin for a long time now and I feel a lot of gratitude. I want to honour my body:
Thank you, body, for doing your best, all the time, every day. You’re fighting an uphill battle now. I see you.
I promise never to be angry with you again when yet another movement becomes impossible for you. I promise to listen more and better to you than I ever have before.
I solemnly swear that when you can’t go on any longer, we’ll do what you want. When that time comes, I’m going to do everything I can just to surrender and be grateful. To rest in trust and acceptance. To take joy from the amazing life we’ve had, and to whisper to you with a steady and undaunted voice, “Thy will be done, not mine.”
This is an edited extract from I May Be Wrong and Other Wisdoms from Life as a Forest Monk (Bloomsbury, $30), by Swede Björn Natthiko Lindeblad, who spent 17 years as a Buddhist monk. He died on January 17.
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