I could never go through what you’re going through…”
I’ve heard this comment from friends and family and even strangers for five years now and it always makes me uncomfortable. Something’s off with it; somehow the sentiment just doesn’t ring true.
Thanks to Thomas Mann’s The Magic Mountain – I’m carrying out my vow to re-read this magnificent and complicated book – I’m learning why the remark causes such unease. I think I understand how the words do not say what they are meant to say.
It’s meant to be a kindness, even a salute. “I don’t know how you do it! I couldn’t,” someone will say to those of us fighting chronic illness or life-or-death health battles. Our treatments, our pain, the unending doctor visits and hospitalizations – they seem unendurable, impossible to someone looking at it all from the healthy “outside”.
How does one respond to such words? What do they even mean? What seems so clear to those healthy others has no clarity at all on this side of the divide. Hearing them, I wonder: Is my life so unique? Am I really doing something so incredible? I don’t think so. I have only to look outside myself to see others bearing much worse than me.
In reply, I usually mumble bromides about how I’m nothing special, how nobody really knows what they’ll do in a traffic accident much less a health calamity until it actually happens, and that’s true as far as it goes. But what I really want to shout is, “You’ve got it wrong! That’s not the way it is! I’m not doing anything special!” To say that however, I have to bridge that divide between what the healthy person sees and the sick person endures. And to explain it to others, first I have to explain it to myself.
Thanks to Mann’s book I’m beginning to understand that the problem is one of perception.
From The Magic Mountain:
The sympathy that the healthy person felt for someone who was ill, which could intensify to the point of awe, since he was unable to imagine how he could ever bear such suffering himself – such sympathy was utterly exaggerated. The sick person had no right to it. It was based on a misperception…
I have no special coping skills, no extra slice of courage. A bit more than average stubbornness maybe, but just that. I did not summon strength from some inner well to deal with the diagnosis of liver cancer. I was stunned senseless hearing the news, just like most – all? – are. Nor did I meet the challenges of a liver transplant with jutted jaw and iron will. My jaw, like the rest of me, was quivering. Check out my very first post on this blog: you’ll find no heroism, no boldness there.
When I got the news about liver cancer I was still healthy. And Healthy Ed didn’t have cancer. Healthy Ed wasn’t the least bit sick.
… a misperception, a failure of imagination, because the healthy person was attributing his own mode of experience to the sick person, the making of him, so to speak, a healthy person who had to bear the torments of sickness – a totally erroneous idea.
Yes, I understood what the doctor was saying: a tumor had appeared in my liver. It could see me dead in six months. But I was Healthy Ed! I was fine, see? I’d just walked out of a gym when I got that awful call. I’d bicycled 25 miles the weekend before. How could I not be fine? I need a transplant? Need what?
My view of myself – my self-image if you will – was not of someone ill.
Yet bit by bit Healthy Ed morphed into Sick Ed – the one who’s been going through these medical trials, the one taking the risks, the one enduring the uncertainty and the pain. The one just trying, trying to stay alive. Along the way my perception of myself changed.
The sick person was just that, sick, both by nature and in his mode of experience.
How did the change happen? How did I get from being fine to being sick? As Mann says, the change is rooted in my experience.
When I got over the shock of the diagnosis, I had one single step forward: I was to go to UCSF Medical Center’s liver clinic. After a day or two of numbness, I made the appointment. That was my first step away from Mann’s healthy person to a sick one – the first of many tiny mental shifts in perception that replaced the old Ed with the new one – the one who would put up with all these impossible things.
Illness battered its victim until they got along with one another: his senses were diminished, there were lapses in consciousness, a merciful self-narcosis set in – all means by which nature allowed the organism to find relief, to adapt mentally and morally to its condition…
Over the next few months the shifts in perception accumulated. The diagnosis was confirmed. I saw for myself the tumor in the scans. I had chemoembolization, a treatment that runs a snake through a vein and drops deadly chemotherapy directly onto the tumor to slow its growth. That was one of my larger shifts of perception: no one gets chemo on a whim. So did being accepted into the transplant program.
One small step followed another small step. Or to be more precise, one tiny shift of perception followed another. And the sum total of these shifts in how I saw myself changed me at my core. I changed from experiencing myself as a healthy person to experiencing myself as sick. Sick Ed replaced Healthy Ed.
…all means by which nature allowed the organism to find relief, to adapt mentally and morally to its condition, and which the healthy person naïvely forgot to take into account.
Healthy people, even the caring or worried healthy, have no clue about this shift in perception. Mann says they “naïvely forgot” to take the change into account. But realistically, how could they know?
Healthy people have not taken the small steps. They haven’t had their view of themselves forcibly changed, haven’t been “battered” by illness into doing what comes next, into seeing the situation as not being something you can agree or not agree to but is instead an insanely speeding ride you’re stuck on, desperately hanging on till it stops.
What is off with the “I could never…” comment, what is so jarring when someone says, “I don’t know how you do it,” is this: the sayer doesn’t realize that the old Ed, “Healthy Ed”, never could have gone through any of these experiences either. But I’m not him any more. I’m not the person I was back when I was “fine”.
Instead, I am this new Ed, the “Sick Ed” in Mann’s parlance, going through these impossible things, having these impossible experiences.
I’ve put the full quote from The Magic Mountain and another related quote from later in the book in the comments.