Episode 59: "Connecting All the Parts," or Seeing the Pattern of One's Life When Facing Death

One of my heroes, Oliver Sacks, is dying.

If you haven't read any of Sacks' books, you must. Years ago, I read The Man Who Mistook His Wife for a Hat, which whetted my appetite for more knowledge of the brain and its workings, particularly as they relate to memory, consciousness, and personality.

Oliver Sacks--Photo from NPR.org

Sacks also wrote Awakenings, which was made into a film with Robin Williams playing Sacks as a young doctor treating patients with encephalitic lethargica, a disease that leaves many of its sufferers in a catatonic state. Sacks treated these patients with a drug that brought them "back to life" but tragically was not a permanent cure and the patients lapsed back into catatonia after a fairly brief period of consciousness. In the years since the book came out, Sacks has been criticized by some who say he didn't properly conduct his research on these patients, but as far as I'm concerned the man's compassion for his patients shines through in all the pieces I've read that he's written. I believe his record, as recorded in his writings, and his contributions to neurobiology need no apologies.

Encephalitic lethargica is rare, but a sudden rash of patients landed in hospitals just after World War I and the Spanish Flu epidemic, leading some scientists to believe the condition is caused by a virus. However, post-mortem examination of brains of some of its sufferers have shown no evidence of a virus--so who knows. Fortunately, researchers continue to research cases as they appear, and the more we can learn about the brain the better for those of us who have neurodegenerative disease.

As a sufferer of hypersomnolence--which some encephalitic lethargica patients have rather than sheer catatonia, I'm obviously intrigued with this condition and all others that result in a less-than fully-conscious state. My neurodegenerative disease was only recently diagnosed, and the exact type of disease has yet to be determined. White matter lesions throughout the brain, found in my brain in abundance on a recent MRI, is a sign of a number of different degenerative conditions, so the differential diagnosis (investigating the different diseases I may have and coming up with a definitive diagnosis) has not yet been conducted. In fact, little is going on in that department. It's more of a "wait and see" type thing, itself quite unnerving.

More than the encephalitic lethargica angle, which I do plan to read much more about, right now I'm more interested in Sacks' thoughts in an essay he recently published in The New York Times as he contemplates his imminent (thought hopefully not too imminent) demise ("My Own Life: Oliver Sacks on Learning He Has Terminal Cancer, The New York Times, February 19, 2015). A cancer in his eye, treated nine years ago, has all these years afterwards metastasized to his liver and is now incurable.

"Over the last few days," Sacks, who is 81, writes, "I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts."

Though Sacks quickly goes on to say he is not yet done with life, I want to stop and think about this line for a moment. It's worth repeating. "I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts."

I'm an avid reader and lover of libraries and bookstores. Years ago, I was in Baltimore at the University of Maryland bookstore and happened upon a book written by a social worker that intrigued me after reading the blurbs on the back. I bought the book.

This social worker had spent time with older adults, "seniors," if you will, gathering their life stories, and what had struck her was that most of them told her that, as they faced the end of their lives, they recognized their lives had had an underlying pattern, a purposeful pattern, in which things had happened for a reason, one leading to the next and the next until a sort of tapestry had been woven that represented their lives.

Though I never finished the book (a rare thing for me, but I was into so many things at the time that I somehow lost track of it), I remember sensing great relief that these folks had felt this way and that enough of them had done so that the social worker had recognized the, ahem, pattern.

I found the book not too long after losing both my parents in the space of four years while in my twenties. I'd read lots of books on death and dying by then, but this book gave a fresh perspective, one about life more that death, yet with added urgency.

I so wanted to believe life had meaning, that my parents' lives had had meaning, that my life would have meaning--that all lives have meaning. I still do. Yet, given my inner skeptic, I still remain open on the question.

Do our lives have purpose and patterns that "connect all the parts," or are we merely random examples of life, no more significant than a tsetse fly?

Oliver Sacks' saying the same essential thing that the seniors' narratives in the book had strikingly shared--this sense of meaningful patterns--is again reassuring. I can't help but face my own demise after my diagnosis of neurodegenerative disease. That this reassuring sentiment is now shared by my personal brain guru makes the idea just that more meaningful.

I think a lot about my brain these days, and I think about death a lot these days.

And so here is one of those connections Sacks suggests--a pattern, if you will, at least as it relates to one aspect of my life--my fascination with the brain. My parents' deaths, the social worker's book, and now Oliver Sacks' essay have nicely woven together. Add to that pattern another book that immensely comforted me after my parents died--Viktor Frankl's Man's Search for Meaning, written with hope and heart about his experiences in a German concentration camp--and the fact that I just this moment looked up Frankl and was reminded that he was also a neurologist--and, well, the pattern weaves on.

If I'd known what I now know about myself when I graduated from high school at the age of 16 (after skipping my junior year), I would have gone straight to college and studied neuroscience rather than taking the massive detours in life I did to arrive I'm not quite sure where. As I've said before, I share more with Amy Farrah Fowler than I care to admit--though I just did.

I have more in common with Amy Farrah Fowler
than I care to admit--though I just did!

Of course, the idea of lives as narratives is not brand new. Though I haven't been an active student since first becoming debilitated by illness in 2008, I am about halfway through the course work for my PhD in English (and thinking about trying to finish now--why not?). I've studied the concept of identity and personal narrative through that lens, a lens that does not conflict at all with my interest in neuroscience. These two seemingly disparate fields--English and neuroscience--connect (there's that word again!) in this arena. Our memories form the narrative of our lives, and memory is a key component of the scientific study of the human brain, just as narrative is key to English literature and identity studies.

Yet, as reassuring as all this is, it also lends itself to a scarier scenario, the scariest  part of neurodegenerative disease. Will I lose my narrative, my memories?

My grandmother was sharp as a tack and lived in her own apartment until she turned 86 and started calling my mom at 2 a.m. and asking her why it was so dark at 2 in the afternoon, putting the milk carton in the oven, and other wacky things. I saw her disease rob her of who she was, though she always managed a smile even when the nurses at the nursing home tranquilized the bejesus out of her, as was customary at the time.

And so, even if my demise isn't immediately imminent, I can't help but worry that I will lose my own narrative before actual death occurs, a sort of death of the personality, the person I am, or who I believe myself to be.

Does my life have a meaningful pattern? Do the good and bad things I've done or experienced all add up to a life that makes sense in some grand scheme, if only to myself? I have inklings of that sense of pattern, and that's encouraging.

It's easy for my romantic side to cling to those, but, in the dark nights while I'm wide awake and the rest of the eastern seaboard of the United States is sleeping, my inner skeptic creeps in and the idea that my accidental life on this random planet in an incomprehensible universe means nothing at all, nothing whatsoever.

And then I read something amazing by Oliver Sacks, and the darkness lightens.

No matter what the ultimate answer to this question of meaning ends up being, I have to agree with Sacks when he assesses his life in his new essay: "Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure." The privilege has been ours, Dr. Sacks. And the biggest privilege for me has been giving birth to the two best sons on the planet.


Epilogue: In a truly strange twist to this episode, I was just putting the caption on my Amy Farrah Fowler photo above when Honey walked in the room. Knowing my nuttiness for turtles, he said I needed to go to the living room and watch The Big Bang Theory: Amy (Farrah Fowler) and Sheldon were about to buy a turtle together. Just as the caption I'd just finished typing says, I have more in common with Amy than I care to admit.

Coincidence? Hmmmmmmmm

A little feller I rescued from the middle of the road
shortly before his release (and me)