Read this book and you'll never complain, ever, about anything.
Imagine being trapped in a vegetative body but with full cognition and awareness. You can hear, see and understand everything, but you can't move or do anything. Everyone around you--your family, your caregivers, everyone--thinks you're a literal vegetable.
And some of those around you will act like it, having insulting conversations about you while you're right there. Some caregivers--not all of them, mercifully--will handle you like a slab of meat. Occasionally you'll be rolled over to a performative "activity" in which a caregiver drags your fingerpainted hand across a paper, so your care facility can show your family you aren't spending all day staring at the wall. But yet you do spend most of your time staring at the wall, or worse, watching Barney. You will come to hate Barney with all your soul.
Imagine living like this. For years.
Until one caregiver really looks at you, really looks at you, and figures out somehow that you are "in" there. And then everything changes.
This is what happened to Martin Pistorius[1], who, one day at age 12, came home from school not feeling well, began declining neurologically over the following weeks and months, and then descended into a full coma. Within a few years, he "woke up" cognitively, but with no physical control or mobility whatsoever[2]. And he remained in that state--cared for, but largely ignored--for several years, trapped in his body. Doctors couldn't even figure out what his condition was, much less help him. As Pistorius himself says it, "politely but firmly the medical profession washed its hands of me as my mother and father effectively were told to wait until my death released us all."
[A quick affiliate link to Amazon for those readers who would like to support my work here: if you purchase your Amazon products via any affiliate link from this site, or from my sister site Casual Kitchen, I will receive a small affiliate commission at no extra cost to you. Thank you!]
Except that wasn't all. And the story Martin Pistorius tells about what follows is astonishing, and well worth reading on many levels. It is a story about how we all exist in a sort of blast radius: what happens to you doesn't just happen to you, it impacts everyone around you. His family had its own catastrophic struggles--emotional, physical and financial--as they attempted to care for him. His parents had a major schism over his care, as his mother, understandably, simply couldn't fully handle what had happened to her son.
It is a story about the caregiving industry: The world of caring for people with severe disabilities is a beautiful calling for some, but it isn't for everyone. Martin was blessed with both kinds of caregivers, and he tells stories that both horrify and rebuild your faith in humanity.
It's a deeply inspiring story about personal growth and personal development. Martin's patience and acceptance are tested unimaginably over the course of his illness and coma. And then he is tested even more across the journey of his recovery.
Finally, this is a story about individual agency. Pistorius begins as a helpless body in a world where others chose everything for him: what and when to eat, what he'd wear, when he would be turned from one side to the other, when he would go to bed, what time he's wheeled over to watch Barney. Everything.
But as he develops more and more physical control and function, has to learn how to make decisions for himself, and he discovers that he needs to develop the fundamental building blocks of individual volition. It's fascinating and inspiring to see him work on this underlying metaskill as he feels around the boundaries of his mental and physical potential. He learns to think through where he should or shouldn't choose things, what things he can and cannot do, and which, if any, of his limitations he should accept or fight. His goal is to live a fulfilling life on his own terms, rather than a life of default choices set by others. Many of us out there don't even know this is a goal.
Read this book and learn this man's beautiful life story. It will change you.
Footnotes:
[1] I learned about Martin Pistorius by accident, from an offhand comment at The Midwestern Doctor's substack, in a provocative article on ethical gray areas in the organ transplant industry. I recommend The Midwestern Doctor as a useful and much-needed counterpoint to "modern" allopathic medicine.
[2] I'm not a doctor, not even close, but it sure sounds like he contracted some kind of encephalitis or meningitis, and judging by his inability to move or control his movements, it did tremendous damage to the basal ganglia region of his brain. My own father passed away late in his life after contracting a very rare insect-borne encephalitis that did tremendous damage throughout his brain, particularly in this region.
Martin Pistorius timeline:
Born 1975
1987: Martin, now around age 12, develops the unknown illness that will eventually fully paralyze him.
1992: Around age 16 Martin begins to regain consciousness and awareness.
1995: Around age 19 he regains full consciousness but cannot move.
2001: Around age 25 Martin is assessed after his caregiver Virna van der Walt realizes he is alert and can communicate; he soon begins communicating using augmentative/alternative communication equipment. He begins regaining some movement.
2003: Martin teaches himself how to read and write.
2008: Martin meets Joanna, they are married the following year in 2009.
2011: Martin publishes his autobiography.
2018: Martin's and Joanna's son is born.
[Readers, as always, a friendly warning: the notes and quotes from the text that follow are here to help me order my thinking and better remember what I read. They are almost certainly not worth reading! Feel free to continue, but also feel free to stop right here and return to your lives.]
Notes:
x "Have you ever seen one of those movies in which someone wakes up as a ghost but they don't know they've died? That's how it was, as I realized people were looking through and around me, and I didn't understand why. However much I tried to beg and plead, shout and scream, I couldn't make them notice me. My mind was trapped inside of useless body, my arms and legs weren't mine to control, and my voice was mute. I couldn't make a sign or a sound to let anyone know I'd become aware again. I was invisible--the ghost boy.
"So I learned to carry my secret and became a silent witness to the world around me as my life passed by in a succession of identical days."
1 "I've learned to master time instead of being its passive recipient." [It is fascinating to think about this idea of psychological time management; note also comments in Uncommon Therapy where Milton Erickson would hypnotize or use suggestions on patients to dilate time or adjust the patient's perception of time; also the reader can barely imagine the seemingly endless hours and days of Pistorius's life when he was fully paralyzed and in his pseudocoma, that would either shatter you or you'd develop total mastery over it. I suspect we all can do this to the extent we (self-fulfillingly) believe we can, and that itself is an empowering belief set.]
5ff The author comes home from school one day with a sore throat, and never went back to school again; in the weeks and months that followed he began weakening, degenerating, losing cognition, eventually descending into a coma. Doctors couldn't figure out what the problem was. [Doctors were baffled!] "Politely but firmly the medical profession washed its hands of me has my mother and father effectively were told to wait until my death released us all."
13ff He returns to consciousness around the age of 16, although he's totally immobilized; gradually his limbs began moving but in a spastic way, he had no control over them. By the age of 19 he had a full understanding of what really had happened, who he was, and where he was. Sadly no one else understood what was happening: his family and his caregivers were told that he was severely brain damaged: any time he turned his head or smiled they thought it represented only the most basic improvement.
16ff Arresting scene here where he tries to get his father's attention as his father is undressing him: Martin tries to will his arm to work, and starts waving his arm successfully, but his father just carries on, pulling off his shoes, he doesn't notice. [This goes to how we get into habits and we stop paying close attention: here the father is habitually performing the tasks he normally does for his son, helping him in and out of his clothes, wiping drool from his chin, or whatever. It's normal to do these things in a way where you've acclimated to everything, you've accepted that he's more or less vegetative, and there's a form of automaticity that permeates what you do because you do it every day, day in and day out. Thus you're not awake or alert to the possibility that he might be in some new state or condition. In fact this might be a normal self-preservation mechanism for the father, because otherwise you'd have constantly crushed expectations, since it's such a freakishly rare thing for someone to come completely out of a long-term coma like this.] Also interestingly Martin himself goes through his own rage and disappointment at the fact that he can't get his father to notice him. "To other people, I resembled a potted plant: something to be given water and left in the corner. Everyone was so used to me not being there that they didn't notice when I began to be present again." The author talks about being put into a box, "Boxes make us easier to understand, but they also imprison us because people don't see past them."
19ff We meet Virna, a caregiver who Martin believes is the first person who actually notices or believes that he has cognition and is actually awake inside his shell. This chapter starts with the author himself not recognizing or noticing "hope" when Virna first arrived in his life. She actually looks into his eyes and recognizes that Pistorius understands her. He gets taken to be tested; she asks him 'You're going to do your best, aren't you? [Which brings us to a takeaway: you have to do the vast majority of this stuff yourself to make it painfully obvious that you have "therapeutic potential": the system will put you in a box too, and if the system wants to see you without therapeutic potential, it will. For more on making sure you have therapeutic potential, see my review of Uncommon Therapy.]
23ff It's now 2001, some 13 and a half years since Martin first fell ill; he's tested using various switches, tracking eye movements and various other tests; they find that he is able to communicate.
32ff A difficult chapter here on his mother: she had a lot of [very understandable] anger and resentment about what happened; in fact it divided his family on some level; you can't blame the mother: she has a reasonable case that almost anybody in this kind of situation would end up permanently vegetative, and she was [once again very understandably] concerned about collateral harm to her two other children and the rest of the family, thus she wanted to put him in a full time residential facility; the father didn't want to do this and it became a fundamental disagreement between them; he learns eventually that his mother was almost destroyed by his illness and wanted to just protect her other two children after losing one child. She searched and hoped tirelessly for the first couple of years of his illness, but then she eventually had to protect herself. His mother even tries to commit suicide.
36ff On his very slow progress, imperceptible to everyone else, he also didn't know how to read or write at this point, so he had to use symbols and eye movements. "For the first time in my life, I'll be able to season my food."
40ff Comments here on some of the performative activities done at his day-care facility, like finger painting that's really done by the staffers dragging his hand on a piece of paper. The activities typically aren't actually enjoyable; their purpose is performative: to show family members and parents. In general Pistorius wishes he could be left alone. At the same time he understands the facility he spends his days in is much higher quality than many others.
41 Striking comments here on the caregivers and how some of them are going to make it working with severely disabled patients, but many of them aren't, and the author can see who is who right away. "I've lost count of the caregivers I've seen come and go over the years. Many disappear almost as soon as they arrive, and I've learned how to recognize the look of almost revolted confusion they get before even they realize they feel that way." Also comments on the caregivers "for whom this work is a calling" there's one example here of one of the caregivers who lost the light out of her eyes when one of the children died of pneumonia at age 6. The author sees this transformation in that caregiver and realizes that for some people this is way more than just a job. Other caregivers unfortunately treat him like equipment.
45ff On AAC, augmentative and alternative communication: various equipment to help people find their voice. His parents decide to purchase a specific comm device for him, but the South African Rand suddenly devalues by half, and the device's price instantly doubles, so the parents have to cancel the order; but then they buy a standard computer that can be loaded with communications software. [Nice to see the family solve the problem with creativity rather than "paying list" for a massively overpriced bespoke communications device; it's nauseating how the healthcare/disability market extracts money from people sometimes, and you have to beat the game by playing in a different way... you can't be a patsy and just order off the overpriced menu whatever the industry serves up to you.]
50ff Interesting comments here on the caregiver Virna, who was the one who figured out that he had cognition and that he understood; she figured it out using the same kind of mosaic thinking that you do with investing: she didn't have proof from any one specific thing, it was a mosaic of a number of things that she put together over time. Also interesting comments from the author about time dilation: during the time he spends with this caregiver (she does like an aromatherapeutic massage with him), the sessions are 45 minutes long, but he slows time down in his mind and pays extra close attention so that he can replay it later during the dreadful monotony of day-to-day life otherwise.
58ff His mother gives up her job and is now teaching him intensively as they work with a computer-based software communications program; she's surprised at the speed at which he's learning. At this point he's still communicating using only the most basic words and phrases. They actually have to build grids and lists of words, and she's gradually realizing how extensive his vocabulary is--with great shock [and likely chagrin too]. He wonders how this makes her feel: "I suspect it might horrify her to think that I've been fully aware for years, but we don't talk about it, and I don't think we ever will." And the author does a flashback to some of the fights that he saw his parents had over his care, whether to care for him at home or leaving full time at an institution, etc. The author himself is filled with guilt. "If I'd died, everyone would have been better off." Also quite a striking disturbing flashback here where after an argument between his parents (where Martin was sitting right there, immobile, in the family room), his mother is crying on the floor, wringing her hands and moaning. She looks at him and says, "You must die... You have to die." Only later did he begin to grasp his mother's desperation after being forced "to live with such a cruel parody of the once healthy child she had loved so much." At the time he actually wanted to die.
64 "I long ago learned to forgive Mum for her mistakes. But as I look at her now, her brow knitting in concentration as she tries so hard to think of the color I want to add to a grid, I wonder if she's forgiven herself. I hope so."
78ff On what he calls the three furies, frustration fear and loneliness; [when Albert Ellis talks about having high frustration tolerance, this guy is an absolute Olympian in managing frustration. It puts into stark contrast the types of "frustrations" that the rest of us experience: if we're being genuinely honest with ourselves we would tolerate nearly all our frustrations with great gratitude.] Living with his condition meant living with absolutely no agency or control over anything: he couldn't speak, he couldn't move his body in any way, he couldn't control even the simplest things.
83ff Now it's some two years after he's been assessed, and about a year after he first got his laptop communications system; and he's now learning and intuitively understanding computers easily; he's even able to answer the phone using his laptop; he starts experimenting with ways to make his computer voice sound more natural; he actually gives a short speech to a group of staffers at his health center; it's the first time he done anything like this.
86ff He actually learns enough about computers to be able to help do some work to fix the computers at his health center, with one of the staffers acting as his "hands." He has a job working one day a week volunteering at his own health center. He starts to feel genuine pride. "I can hardly believe that I'm being asked to do more than stare blankly at the walls of a care home." His body starts to get stronger, he can use more parts of it, he's even able to use a touchpad because he can control his right hand with quite a bit more facility now. He also starts testing systems for a communication software company.
94ff Very interesting and subtle scene here where the author is in a group class with an advocate for people with disabilities; it's a conversation that is indirectly about volition and agency. Pistorius was asked what a person needs to achieve a dream and he answers, "People must help you work out what your dream is. They must enable you to have one." And he and the teacher have a back and forth where the teacher tries to persuade him that he doesn't need other peoples' permission to have or to execute his dreams. Pistorius then writes how this idea doesn't even compute for him yet, as he's spent his whole life being given food that others chose for him, put into bed when someone else decided, dressed with the clothes they had chosen for him, etc. He now has to learn how to make decisions for himself and learn what his own expectations could be. [This is a short passage, but there's a lot going on here, quite a lot to think about. What does it mean to have volition, what are the boundaries to a person's power and volition, and do we give away a lot of our decision-making power and agency without even realizing it?]
96ff Thoughts here what it's like being a comatose but alert person in a room: people think you're "not there" so they rip farts, pick their noses, mumble; people reveal themselves in ways both ugly and beautiful.
103ff Martin makes so much rapid progress using the AAC equipment that they ask him to work at the center. "But I'm so unused to being asked my opinion that I don't know how to give it properly yet." He's highly intelligent, but he also is beginning to get rattled by the tremendous gaps in his own knowledge [which is also an indication of his intelligence].
129ff Interesting comments here on subtext, tone and sarcasm, and different things people can do to convey subtlety in their speech, when he's stuck with a totally deadpan computer voice. "I can't spit out syllables in anger or shriek them happily; my words will never quaver with emotion, rise expectantly for a laugh just before a punchline, or drop dangerously in anger." Also on the rapidity of regular peoples' speech: how when two people are in a conversation their sentences overlap and flow into each other, but talking to Martin takes conscious effort, the counterpart has to take time and wait, leaving space, and so the rhythm, the tempo, is too difficult for most people. People have to give way to him, they have to be able to tolerate gaps and spaces in the conversation. "A conversation with me is slow and takes time and patience that many people don't have."
135ff November 2003: Pistorius gives a speech to some 350 people telling his story: "For a time, when I first discovered what had happened to me, I went through a phase where I would bite myself in frustration at the life I found myself in. Then I just gave up. I became totally and completely passive... In 2001 I was at a day center for the profoundly mentally and physically disabled. Eighteen months ago, I didn't know anything about computers, was completely illiterate, and had no friends. Now I can operate more than a dozen software programs, I've taught myself to read and write, and I have good friends and colleagues at both of my two jobs." The audience is blown away by his speech, inspired.
145ff Interesting comments here on how many of his reference points are changing as he develops more and more independence; he starts to move away in his friendship with Virna--who was the original reason he made any of this progress in the first place. Also as he interacts more and more with people his reference points change about trying to calibrate other peoples' responses to him, how to recognize and read people as he tries to interact with them.
150ff Disturbing chapter here when he describes severe mistreatment--borderline torture--from a specific female caregiver at one of the facilities he lived at. And then the following chapter he talks about sexual assaults that happened to him from female caregivers, including one female caregiver who molested and abused him for years.
164 Another interesting passage here where Pistorius works all the time, he starts sleeping just four or five hours a night, he has imposter syndrome, he's also not willing to let go of life a second time after getting second shot at it; he doesn't have social life or hobbies, all he does is struggle to keep on improving. "I work hard to make up for what I believe I lack because I feel like a fraud."
173ff Another instance here where, no matter what your condition, you can always be grateful when you see someone in an even worse condition: he talks about Graham, who had a bilateral brain stem stroke and was paralyzed from the eyes down; he can't move or talk and is 100% dependent on others, but he still figures out a way to love his live. Also comments here on Martin's many, many failed attempts to find love and companionship.
179ff Although he technically has the ability to express himself he finds himself unable to express anger when he has it; he's afraid to alienate the people around him, and he also got so much practice bottling it all up for so many years. Also he experiences fear more often, fear of doing or saying the wrong thing. [It seems like he's learning about psychological boundaries at this point, now that he actually has the ability to establish them. He has to think about where those boundaries should be, when and how he should enforce them, etc. As far as I see it, he's way ahead of the game! Many people never learn to do this over the course of their entire lives.]
184ff Martin contracts pneumonia, this is now some six years after he had regained consciousness, but he was still fully paralyzed, and at this point in his life he had basically given up that anyone would know that he was not in a coma, this is 1998, so he was around age 22. He was so defeated by life at this point that he wanted and hoped to die. "I wasn't needed in this world by anyone."
189ff Fast-forwarding about ten years, he meets Joanna for the first time; she's a friend of Martin's sister Kim, she's also from South Africa, but she and Martin's sister become friends while in England, working; like Martin's sister, she's a social worker. They hit it off right away, they start to exchange emails and then begin speaking by webcam frequently. [She actually had to chase him down at first!] She tells him "You're the most honest man I've ever met" and she spontaneously invites him to go with her to Disney World despite all of his disabilities. He tells her everything about himself physically, she tells him none of it matters, we can work it out as we go along. Ultimately he can't get a visa in time to go, but later he decides to fly to the UK, alone, despite his parents' misgivings: how he's going to feed himself on the flight. etc.
208 "You've got to eat a little salt" a quote that South African mothers say to their children to teach them that nothing is perfect and that life is unfair sometimes.
214 Martin teaches himself to read and write at the age of 28; this is in context of a discussion on his lack of confidence in the work world, his aversion to taking risks, as well as his struggles to deal with the real world, which was wildly unpredictable and uncontrollable compared to his highly controlled therapeutic environment for many years before this; all of this is in the greater context of taking the mother of all risks and risking his heart with Joanna.
221ff More interesting comments here as his mother articulates her fear that she'll see her son's heart broken with this woman who he's never met in the UK; Martin tries to tell her that Joanna and I know each other too well for that to happen; and then he follows up with a discussion of how he basically has been suspended in childhood for almost all his life, as his parents are (understandably) apprehensive about him traveling so far from home, especially when he's only been on one domestic flight--a short on--on his own, and has never otherwise traveled by himself. He sits his parents down and tells them "I have to be able to make my own decisions and mistakes. You can't protect me forever."
227ff He lands in the UK, he and Joanna meet, and they both know right away that they will get married; he surprised by certain things: she doesn't mourn what he once was, also he's surprised to find that she seems almost uninterested in his rehabilitation, she doesn't push him to do things or have any expectations; interestingly this makes him want to do even more. [I found this to be fascinating: on one level you'd think you'd want your partner to help push you to do more, but then what if your partner didn't actually love you for you, but for the you she thinks you need to become. Moreover, some people when they are pushed will give reactance to that push and will actually do and grow less (this is one of many key conclusions from Uncommon Therapy), and so perhaps it makes some sense that his response to her indifference to his rehabilitation was to drive himself even more.]
236ff [More intriguing scenelets here that bring up some interesting second-order thoughts] Martin experiences a form of decision fatigue, he's gotten so used to people making most of his decisions for him for so many years; here he becomes insecure around his girlfriend that she would find out that he simply doesn't know how to make up his own mind; there's a scene here where he's sort of stunned into submission by row after row of sneakers, or row after row of cereal boxes; he also talks openly about how he doesn't feel worthy of her as well. But the underlying subject here is basically decision fatigue in the modern world of consumer decision making: there's all these choices, all of this ersatz knowledge that you have to have to make these choices--and none of it really matters; the example here with the overwhelming shoe choices is intriguing because he already has a pair of trusty, sturdy shoes that are built specifically to help support his ankles and feet, they are more than sufficient, does he really have to know the difference between Nike or Adidas or high top shoes or whatever? [And once he learns that there are a zillion other ersatz things he can learn after that... It will never end.] Another irony is that she compliments him on helping to teach her "to slow down and take notice of a world that I've spent so long rushing past" as she puts it: getting us to rush-rush-rush and buy-buy-buy is another thing that consumerism does to us. Also interestingly Martin interprets these situations by saying, "deep down I still don't understand adult life." [My brother, when it comes to the insane amount of consumerism and endless choices burying us all, it's a blessing if you don't understand it. It's far better to not understand it.]
250 Martin and Joanna decide that they will get married; he will move permanently to the UK; he tells his parents and they're overjoyed for him.
260 Another striking scene where Martin and Joanna go through some of Martin's old things from when he was a boy, before he got sick, like his favorite toy, his Legos, a letter he wrote to Santa Claus, etc., and his mother is suffering in particular here because these things are reminders of the boy who she lost, and Martin is upset seeing his parents suffering as he goes through his childhood stuff. Yet unfortunately Martin himself doesn't remember anything about any of it--to him it's all a big blank. And yet Martin can't help but feel unbelievably guilty for the emotional toll his life and illness had on his family.
271 The story ends with him about to marry Joanna, as she walks down the aisle. Note the timeline above: they would have a child together some nine years later.