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Joint book review - The diving bell and the butterfly | Two arms and a head

Contains spoilers as well as discussion of suicide, death, paralysis and other subjects some people dislike. If you dislike these subjects, or related subjects, do not read this. If you're not sure discussion of these subjects is harmful to you, consider first engaging with them in a medium other than my blog.

I read both of these books in proximity, for seemingly unrelated reason, they were kind-of plopped in front of me and short enough that I could finish them that day, and I was bored, so I did.

The diving bell and the butterfly is written by Jean, a French journalist who was paralyzed by a stroke and lost control over all his body except an eyelid.

Two arms and a head is written by Atreus, an American biker who was paralyzed from the chest down as a result of an accident.

Jean ended up dying, presumably from complications, a few months after writing his book (or rather, dictating it via blinks).

Atreus commits suicide by gutting himself and finishes the last chapter during what we presume to be his final hours or minutes.'

Both protagonists are young, both find themselves in this position suddenly, both were leading interesting, (seemingly) intensely pleasurable and active lives, both manage to, against the odds, write an interesting book during their final year of lives.

i - Disability

In spite of his much less severe injury, Atreus is the one who seems to suffer much more. Initially, Atreus starts describing his injury in a rather detached way, as if he had literally lost part of his body, or rather, had it replaced with a vital yet gruesome biological apparatus.

My T5 vertebra broke, but my “level” as a paraplegic is T4. The “T” stands for “thoracic” as in I am paralyzed below the level of my fourth thoracic vertebra. This means that I can neither feel, move, nor control anything below my nipples. We need to get very clear on something right at the outset. It is just axiomatic and indisputable that everything below my nipples is no longer me. Hence the title of this work, “Two Arms and a Head”.

Jean opens up the books with a somewhat jovial, though at its core frightening description of his condition:

I had never even heard of the brain stem. I’ve since learned that it is an essential component of our internal computer, the inseparable link between the brain and the spinal cord. I was brutally introduced to this vital piece of anatomy when a cerebrovascular accident took my brain stem out of action. In the past, it was known as a “massive stroke,” and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as “locked-in syndrome.” Paralyzed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.

Jean also handles his injury with a sort of detachment, but its much more contemplative and happy:

My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court.

On the other hand, Atreus's detachment from his body becomes the central element of his thoughts, rather than a way to let them roam free. The vast majority of the book is him trying to convince his audience of the gruesomeness of his condition, and of the fact that this is not something one ever "gets used to" or is able to leave behind when thinking.

The other day I saw a picture of a woman missing both legs. They were cut off mid-thigh. I thought that if only I was like her perhaps my life would be bearable. She was, in my opinion, better off than the pancake man, who is beyond any doubt far better off than me. One man said to me, “At least you didn’t lose your legs.” No, I did lose my legs, and my penis, and my pelvis. Let’s get something very clear about the difference between paraplegics and double-leg amputees. If tomorrow every paraplegic woke up as a double-leg amputee, the Earth itself would quiver with ecstasy from the collective bursting forth of joyous emotion. Tears of the most exquisitely overwhelming relief and happiness would stream down the cheeks of former paraplegics the world over. My wording here is deliberate. It’s no exaggeration. Losing both legs is bad, but paraplegia is ghoulishly, nightmarishly worse.

At least one-fifth of the book consists of various visceral scenes which he paints in order to try and get across what he's feeling: I will avoid direct quotes here, but they involve all forms and combinations of painful sensations and bodily fluids so diverse some were not even part of my English vocabulary.

Jean preoccupies most of the book describing the hospital, his visitors and his past. He makes many mentions of things happening to him, physically, but they seem much less vivid than the descriptions of old memories.

I assume whatever machinery and ritual was required to keep Jean alive ought to be much more gruesome, painful and weird than what Atreus had to do to keep his body functioning, but he seems to pay it less heed.

ii - Death and empathy

Maybe more interestingly, despite Jean being in a much more alien condition than Atreus, his book doesn't seem to ask the reader for any empathy.

Atreus's book feels like an unheaded call for empathy. Not in a sense where he might have decided to keep on living if his friends and family were more supportive, but in the sense that he felt alienated by the refusal of anyone to admit his wish to die as valid. A few days before taking his life he writes:

I wonder if I still want the help of others. Yes, I’d like that. I’d like to be with supportive people who would help me through this. I still want that but feel my desperate desire for it has weakened and moved more toward apathy since I know I can’t have it. You poor people. I always wanted to help the world. People are going to keep killing themselves. Old people who are ready to die will keep taking things into their own hands and nothing is going to change that. We all have to face death eventually.

I am a sane, intelligent, thinking, feeling human being who is in a horrible situation. I need help and it’s nothing big that I need. I just don’t want to be alone. It’s the same thing I have said before. I want to hold the hand of someone I love. I don’t want to be alone at this time that is so, so sad for me.

I never understood how so many people ended up living the lives described in The House of God, people for whom every moment, if they are still conscious, in unimaginably painful, constrained and humiliating. Why aren't more people contempt to just end their lives surrounded by friends, after rereading their favourite book or laying out a final chapter in their last prose?

Atreus gives you a deeply felt understanding of why this is not the case because most people can't kill themselves "alone". Even most people that wish to die, want to do so among friends and might need some encouragement, or at least a shoulder to cry on and a sounding board while considering if, when and how to take their lives. But this is both incredibly taboo and incredibly illegal in most of the world.

“Help” is abundantly available to me but only insofar as whatever I am given is in line with someone else’s agenda, whether it’s the government, a psychologist, or what have you. But once my true, final, carefully considered decision is to end my life and I need support and comfort, I am left completely alone. I am abandoned, pushed out into the cold.

I guess on some level I knew this before reading Atreus's book, but in many ways, his whole work is just an attempt at convincing an imaginary interlocutor of this point: That he wishes to die, that life for him is insufferable, but that in spite of that he is still human, and he would still like to be treated as such, even though he knows that from a practical perspective this is impossible.

But maybe he could have chosen to be more like Jean:

I loved to travel. Fortunately I have stored away enough pictures, smells, and sensations over the course of the years to enable me to leave Berck far behind on days when a leaden sky rules out any chance of going outdoors. They are strange wanderings: The sour smell of a New York bar. The odor of poverty in a Rangoon market. Little bits of the world. The white icy nights of Saint Petersburg or the unbelievably molten sun at Furnace Creek in the Nevada desert. This week has been somewhat special. At dawn every day I have flown to Hong Kong, where there is a conference for the international editions of my magazine

When reading the above, it's somewhat difficult to imagine Jean being able to feel empathy for someone like Atreus. He is often sad, desperate, bored and in pain. But he seems to have accepted these as facts of life.

Where he living closer to our times, in the age of Atreus, I'd have little doubt he would have made full use of all sorts of psychiatric drugs to ease his pain, make his thoughts more vivid and make the days pass faster.

Indeed, Atreus is someone that had hopes of maybe, one day, being able to walk again, provided enough advances in medicine. Jean seems excited at the thought that, given a few more years of practice, he may be able to speak again:

I can now grunt the little song about the kangaroo, musical testimony to my progress in speech therapy

It may well be that Jean would blink a stream of thoughts at Atreus making light fun of how he'd let such a minor and almost unobservable inconvenience bother him to the point of considering suicide. Then again, Atreus would have a ready reply:

One day you sustain a devastating injury that leaves you grievously disabled. You are terrified, confused, and heartbroken, and the last thing you could possibly stand would be isolation from other human beings. But people desert those who are constantly negative, while on the other hand, positive attitudes are attractive. So you just elicit reinforcement from others as best you can.

The coward in me feels like I should end this chapter with some sort of admonishment about suicide. But if I did that, I'd be missing the entire point of both these books.

But what about Jean?

Well, his death is sadder, as it is not intentional, and it happens in spite of the apparent progress described throughout the book.

Then again, maybe part of the happiness he felt came from the writing. Maybe there's a strange authorial pleasure, especially among the French in the late existentialism period, to have such an obviously unique perspective from which to compose prose.

If Jean had the time to write a more in-depth book, one detailing his philosophy in life, he may have well become part of the pantheon of continentals arguing that life still has worth despite hardship and lack of ultimate purpose or justice.

You can be consoled though, that he not only finished the book before he died but lived just enough to hear the news of its publishing, two days before he died. I do hope this timing made him just a bit glad since he was quite skilful at using time-trodden cliches in his writing.

iii - Identity

To some extent, the books are also contradicting viewpoints on what constitutes identity. For even though Jean feels like a different person after the incident, he never seems to mourn the loss of his past self, just his present condition.

Atreus is obsessed with "who he was", there is a sense of continuity that he wishes to cling to. But Jean seems to have not only managed to detach from his body but also, seemingly, is managing to detach from this former identity:

I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory.

...

I rediscover old landmarks, old habits; and this, the start of my first autumn season at the hospital, has made one thing very plain—I have indeed begun a new life, and that life is here, in this bed, that wheelchair, and those corridors. Nowhere else.

I'm tempted to say this might be because of the lifestyles they both lead, and it might be easier for Jean, a writer and journalist, to adapt to the loss of his body. But I feel like that would be uncouth of me to say, especially after Atreus painstakingly explained to me just how horrible it is to lose half a body, not to mention I can't imagine the phenomenological horror of being trapped like Jean.

But I digress, Jean thinks of himself as a collection of places, people, interactions, thoughts and memories. His identity is incidental to the current moment, subject to his hedonistic whims.

While Atreus thinks of identity in a body centric-way:

My personality was something I spent years creating. Along with my mind and body, it was part of my life’s work. It’s true that I accomplished a good number of things, but my greatest accomplishment was myself. It was the thing I put all of my heart into and wanted to share with the world and now it’s imprisoned inside of me. When people tell me I just have to find a different way to express it, I want to SCREAM!! Do you know Joseph Merrick, the “elephant man”? One of his doctors said the saddest thing about him was that he could not form expressions with his face. He could not smile. I expressed myself with my body! I showed joy with my body! I was a fighter and a wrestler, a streaker and skinny-dipper. I was a runner, a jumper, an expert weight-lifter, and yoga master! An adventurer! A thrower of axes and a hefter of logs. A fisherman who wrangled with sharks and octopi. A wearer of giant pumpkins! I was so much fun! A hearty embracer of friends. A climber of trees and of mountains. I loved to throw big rocks! To dig and build and move heavy things around. I was so strong! I loved to play with children! I would catch my cousins in my arms, all three at once, and run them in circles, or bear them proudly around on my shoulders.

I am Horowitz with no fingers. Phiddipides with no legs, Shakespeare with no pen. Michelangelo with no chisel or paintbrush. I am not what I am.


This seems like the thing that dictates the two's very different outlook on life. Surprisingly though, this is unrelated to "living in the moment". Indeed, Jean, from his style of writing, seems to be a very "present" person. While Atreus actually objects to taking medicine to help with his mental state based on a "heavily-persistent self" style view:

That is, being happy in this body and with this life is so fundamentally antithetical to who I am that I would have to be a completely different person. My body is already mutilated- I will not also mutilate my soul with drugs. I would rather die than drug my spirit to where it was content in this fucking cage. You might wonder what I mean by “soul” since I already objected to that idea in the chapter, “Self”. The answer is that it’s just the deepest part of me. It is my dreams, hopes, aspirations, and the place I hold the immense love I have for the wonderful things I adore with all my heart. If I stop feeling pain over being separated from those things, it means they have died inside of me and if those things die, I die.

At any rate, one of the reasons why I find the idea of paralysis interesting (though I admit it's a grotesque fascination) is because it ought to narrow down on the core concepts behind identity (from a phenomenological perspective, that is, I don't do metaphysics). But these books server to show that identity is just as variable and messy of a topic even with such restraints.

Jean seems to have outright "split" his perception between an embodied and "disembodied" view of himself, which is quite understandable in his condition. Atreus keeps a very consistent view of "self", trying to make it consistent with "himself" before the accident, he seems to perch the fundamental value of life upon momentary felt experience, but he lacks the ability to detach I'd usually associate with this viewpoint, which seems often found in ascetics.

iv - Conclusion

On the whole, I found contemplating these books together to be much more valuable than either of them alone. I'm not sure I'd suggest you read them in full because I do get that some people might be rather depressed or freaked out by the topic. For what it's worth if you're among those people, why the heck do you keep reading this review? I guess it might be because of a compulsion towards the very things that scar you, in which case, do avoid being compelled enough to start these books, because they are good enough to string you along the whole way once you start them.

Both authors spend a great deal discussing philosophical~ish subjects, they aren't great at this, but neither are most philosophers. There's plenty of "amateurish" mistakes in discussing phenomenology and cognition, but then again, people study John Rowles, and he is much more oblivious to those subjects than either author. More importantly, their philosophy is written in the plain language of men that have nothing to hide, made to transmit, not impress.

One of the most important things about philosophy is how it helps you at the tails, once you are placed in extraordinary circumstances. Well, the authors here are both in extraordinary circumstances, so while their reasoning might be flawed, it has the benefit of being field-tested in the most oppressive of conditions.

Speaking of which, for me, reading Two Arms and a Head was strangely motivational. It certainly prompted me to walk, swim and just "do" and "feel" more. It might be akin to waking up from a bad dream, feeling the relief of it never had happened, and altering course based on that. It's certainly not what I'd imagine motivational books ought to look like, but I did break my swimming distance and push-up records after reading it. Maybe this just speaks to me being a weirdo rather than to the contents of the book though, I don't know.

I'd want to say that Jean's writing had a similar positive effect on me, but I'm unsure it did. I can credit it with being absorbing and fairly well written, even when not considering the circumstances. It also prompted me to view daydreaming in a more positive light. Honestly, I just find it amazing someone can do all this thinking given that his agency upon the exterior is reduced to one half-functioning eyelid. That in itself is reason enough to read the book given how short it is. Out of the two, it's certainly the less gruesome and more positive one.

I'm unsure how to end this review, which is just as well because I'm unsure what impulse lead me to read the books in the first place, since they're not my typical cup of tea, but I'm glad I did end up reading them.

Published on: 2021-03-15










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