Why blame Jobs?

Something bugs me about the public comments after Steve Jobs’ death. Yes, he had pancreatic cancer; yes, it was discovered at such an early stage that an immediate operation might have saved his life. Yes, Jobs initially refused the procedure: he abhorred the notion that somebody would open up his body and fiddle with his insides. Instead, he opted for a strictly vegan diet.

That tidbit of news made him fodder for skeptics. Oh dear: yet another dumbo who believed that ‘alternative’ treatments are more useful than science; yet another woozy-washy believer who threw himself at the mercy of fringe ‘treatments’; yet another victim of the war against rational behavior. How stupid! You can’t cure cancer by positive thinking, or by a diet of soybeans.

But Jobs never said that. He never rejected any part of medical science. Jobs fully accepted the diagnosis and he never doubted that his ailment was indeed a medical condition; nor did he ever distrust or rebel against the proposed treatment as such. He didn’t stall surgery because he did not trust it or did not ‘believe’ in its effectiveness; he stalled because he feared it. He just thought that surgery was his last recourse – not his first. He wanted to try everything else before he submitted to being cut open.

I’m a thoroughbred skeptic. I’ve read lots about medicine, and I abhor the promises of ‘alternative’ medicine. I’ve written a bestseller that debunked new-age quack theories about the origin and treatment of illnesses. I have multiple sclerosis. I have had a brain hemorrhage, which caused temporarily aphasia, paralysis, epilepsy and the mother of all headaches. I have had an aggressive kind of breast cancer, which was treated with amputation, chemo and Herceptin. I don’t fear medical science: I applaud it, and I owe my life to it.

Nevertheless, I am wary of the notion that health comes before everything else. I am not willing to give up all that I like, love, desire and value merely for my physical survival. Why strive to extend your life when that entails giving up all that you cherish? Also, I don’t believe that health mostly depends on your individual life style. (I smoke and I drink; none of my ailments were caused by that.)

I object to treatments that basically stall one’s demise, and I believe that most people – doctors especially– underestimate the impact that a medical regime has upon your daily life. You may live longer after chemotherapy, but much of the time gained is spent on recuperating from the effects of that same therapy. And I’m not quite sure that I would like my remaining months to be punctuated by hospital appointments and dictated by my white cell counts or any other lab results. I’d rather be led by what I really want to do while I still can, and by how I feel, as opposed to how my stats read.

Moreover, I do not subscribe to the notion that risks can (or should) be eliminated. You want me to do hormone therapy for seven years to reduce my risk that this cancer returns by eight percent? Eh…. Have you considered that by now the chances that I am over-treated are already at a massive eighty percent? Also, even with seven years of hormone therapy there’s still a twelve percent chance that my cancer returns. In other words, the chance that hormone therapy will save me is far less than the chance that I’ll die of this cancer no matter what. Really – how far do you propose to go? How many treatments do you want to subject me to? Will you ever stop wanting to treat me, for an increasingly smaller risk? How much overtreatment will you push on me?

Yes, Jobs stalled surgery. I fully understand why. It was my first response too when I heard that I had cancer: will you all please shut the fuck up and stop explaining about your proposed treatments and trajectories and your insistence that this is the only sensible response? Can I please have some time to familiarize myself with this new and scary assessment? Will you please stop forcing a solution upon me while I’m still trying to digest that I have a serious problem? And by the way, could you please be a bit less enthusiastic about cutting into my body?

There were two fast growing tumors in my right breast, and all the rest of it was already turning into one big cancerous mass. But the notion of having my breast cut off nevertheless freaked me out, and a big part of that freaking out was definitely caused by the notion of surgery itself. During one of the many diagnostic tests in which my breast was caught in yet another machine that painfully flattened it, I suddenly desperately wanted to tear myself lose; to leave that breast behind in the machine that held it, and to just run away – bleeding, but separated from the part of my body that threatened my life. Because in this same violent movement I’d be liberated from this massive and scary body of science that was plummeting down upon me… Also, it would be me doing it: I would rear myself away form this cancer. I would not be helpless and unconscious on somebody’s operating table.

So yes: I can honestly relate to Steve Jobs resisting surgery. But I cannot relate – not at all – to this sudden and rather fierce perception that his hesitance was stupid, dumb, anti-science, New Age-ish; that he ‘apparently’ rejected medical science and rather preferred quack therapies. Jobs did not reject medical science. (He actually had the proposed operation a bit later.)

Bashing Jobs for his initial hesitation and attempting to turn him into the poster child for the skeptic’s case against quack therapies, is short-sighted. What’s more: it’s both a dangerous denial and a painful slap in the face, precisely because it fails to – nay, actively refuses to – understand how scary medical science can be once it suddenly and very particularly applies to your own body, In the end, I think that anybody who demands that you only display a rational response to a life-threatening disease, is irrational himself.

Fear can be alleviated, but only when it is acknowledged; fear can never be reasoned away. Ignoring somebody’s fear or labeling it as ‘irrational’ is insulting and utterly unhelpful; such a response becomes painfully troubling when it concerns somebody’s existential fear. And no matter how you turn it, such a response ends up as a personal reproach. ‘Steve Jobs, you might have lived if you hadn’t been scared; if you had been more rational.’

Weirdly enough – I beg you: do me a favor, and please allow this notion to sink in – weirdly enough, this ‘rational’ approach ends up doing exactly the same as the New Age or ‘alternative’ would-be theories do: they blame the patient for not recuperating. Ah but if only you would have accepted our treatments! Then you might have had a chance. But you didn’t rely on us, you didn’t fully and immediately embrace our trajectory. Well, then you are to blame!

Let’s be clear: Steve Jobs died of cancer. He didn’t die because of his personal response to it.

Of course he was not inclined to have his body opened; he had always and rigorously propagated closed systems, to the point that he even hated screws on the computers that he designed. Of course he reverted to a strict diet when he heard that he had cancer; he had adhered to incredibly strict diets ever since he was a teenager, and he had come to believe that abstinence of substance was a virtue and helped him.

Why in the world do we believe that people should sacrifice everything for their health? Why do we believe that even somebody’s core tenets mean nothing – and should be promptly abandoned – when negotiating a disease? Why do New Agers and skeptics alike propagate that if one doesn’t adopt their regimen (and theirs only), one is to be blamed for succumbing to a disease? Why do we blame the sick if they hesitate about a proposed treatment? Why do we insist on making illness so horrifically personal? Why do we blame the dying for dropping dead?

[Note: This is an extended version of a column that I wrote for a Dutch newspaper. The original can be found here. In this translation, I added some personal information plus a description of my tenets.]

Aantal reacties: 13

  1. Sjaak ≡ 01 Dec 2011 ≡ 08:55

    Don´t believe anything is to blame Steve Jobs. No one is a hero at the moment you experience serious, and especially systemic, cancer, you are never definitely certain of the outcome of immediat, and even modern, medicine regimens. Believe Steve did a great job by managing his disease himself and even lived quiet a long period after definite diagnosis.

    Staying alive after successful cancer treatment is also not easy. That is correlated to a huge, very huge, amount of uncertainty, to deal with that is not every ones business, especially when the patient is highly intellectual.

    On the other hand: a small part of patients who had serious systemic cancer, I had it myself, are alive for tens of years now. We know a lot of the in and outs of the problems you face.

    I remember also the nice happenings at leukemia ward, the nurses so happy with their coming trip to India. I especially remember the beautiful hair waves in my isolationroom on that very evening they visisted the patients telling around that great great news.

  2. Inez ≡ 01 Dec 2011 ≡ 09:29

    “a description of my tenants” – bedoel je hier niet “tenets”?

  3. Spaink ≡ 01 Dec 2011 ≡ 09:35

    Uhm, ja natuurlijk, dank je wel Inez!

  4. Wilma van den Akker ≡ 01 Dec 2011 ≡ 10:13

    Hallo Karin, geweldig hoe je hier weer een hoop dommigheid doorprikt. Het stoort mij ook dat men zo aan de haal gaat met het persoonlijk leven van beroemdheden. En met persoonlijke keuzes. Iedereen heeft zijn eigen redenenen om te kiezen voor – in dit geval – een bepaalde behandeling.
    Ik had DCIS, een voorstadium van borstkanker. Mijn rechterborst moest eraf. Na de eerste hevige schrik dacht ik: ‘let’s get it over with’ en het kon me niet snel genoeg gebeuren. Gelukkig hoefde ik geen chemo, en er viel ook niet te bestralen. Maar ik ben wel lang vreselijk moe geweest. En moest bijna een jaar lang wondvocht laten aftappen. En zat met een erg lelijk litteken.
    Een reconstructie van de borst heb ik maar heel kort overwogen. Natuurlijk lijkt het aantrekkelijk om weer twee borsten en een decolleté te hebben, maar het was het me niet waard om nog meer zware operaties te ondergaan en weer zo lang te moeten herstellen. Wel heb ik het litteken plastisch nog wat laten opknappen, zodat ik iets minder treurig word als ik in de spiegel kijk. Mijn keuzes.
    Maar in mijn omgeving kreeg ik herhaaldelijk de vraag, waarom ik niet voor een reconstructie koos. ‘Ze kunnen dat echt heel mooi tegenwoordig.’ Zal best, maar ik wel het niet, om hier genoemde reden en meer. ‘Maar als je straks weer een leuke man ontmoet?’ Dat lijkt me helemaal een verkeerde reden om voor operaties te kiezen. Natuurlijk zit ik ermee dat ik verminkt ben en ook zou ik dolgraag een lieve partner hebben. En ik vraag me werkelijk af, in hoeverre die verdwenen borst een obstakel vormt.. hier laat ik het even bij. Je verhaal roept een hoop bij me op. Ik wil alleen nog opmerken dat ik je intelligentie en levenskracht bewonder. Zeker na alles wat je lijf heeft moeten meemaken.

  5. Jesse ≡ 01 Dec 2011 ≡ 10:20

    Great article. Thank you. Hopefully more people start writing about this. Is the remark about closed systems with a wink? If so: I doubt whether that will be understood by those who should read this. The rest of the article is very serious. The wink does not seem to ‘fit in’.

  6. Spaink ≡ 01 Dec 2011 ≡ 10:37

    Hi Jesse – no, it’s not really a wink. I found it weirdly fitting that Jobs, who opposed open systems, voiced such a strong distaste of being opened up himself.

  7. JPaul ≡ 01 Dec 2011 ≡ 13:36

    “Steve Jobs died of cancer. He didn’t die because of his personal response to it.” Hear, hear!
    “Why do we insist on making illness so horrifically personal?” Well it is. At least to the patient, though not how some people characterize it: a moral flaw.

  8. Pietie ≡ 01 Dec 2011 ≡ 13:55

    Some facts: 1/ this operation is only done in early stages; 2/ most people die within five years after this operation; 3/ the proces of dying is less painful after this operation then without operation.
    I wonder whether Jobbs was informed about all this, and wether he was aware of the fact that his choice (vegan diet) was not an option. He chose to have no treatment. But he never said it. Everyone has the right to choose not to get treatment. But please, let’s be aware and clear about it.

  9. Spaink ≡ 01 Dec 2011 ≡ 15:41

    Pietie: he did get treated and he did have the surgery, albeit later than advised. He had chomo and he had a liver transplant. And yes, he was told that his vegan diet did not contain all the nutrients that he needed.

  10. Sjaak ≡ 01 Dec 2011 ≡ 15:46

    Nutrients is the big issue in anglo- countries. Mostly sort of apologize.

  11. Sjaak ≡ 01 Dec 2011 ≡ 17:08

    (Extra) Nutrients in regard to cancer is not perse a wise thing to do, easily they interfere with tumors and might even let a cancer grow better.

  12. Spaink ≡ 01 Dec 2011 ≡ 17:19

    Sjaak: nutrients are necessary hen your pancreas is no longer working. There’s all kinds of food that won’t be broken down properly without it…

  13. Sjaak ≡ 01 Dec 2011 ≡ 18:16

    Seems to be diverse in case of pancreatic cancer and practically just different in regard to healthy persons. Carbohydrates and cholesterol seems to work out well, but dietary fibers and vitamine C are not that good. So the term nutrients in this respect is not the right one. And: these understandings are the case when official cancer treatment is being done.

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