The Unbearable Lightness of Hair

Long before we struggled to understand this blood cancer, we tried to understand life. Like you, we were drawn to outlaw poets, lunatics and cult leaders, people who appeared to have broken free of our common ideology.

Existentialism may now seem like a philosophy of adolescence, of “but MOM you don’t get it! Life is Absurd! Cobain knows this and that’s why you won’t let me go to the show,” but to get here, we had to go through there, too.

Along that path, we found lazy Buddhism and watered-down, westernized mindfulness, and thinkers that defied categories. Krishnamurti. Ram Dass. Thich Nhat Hanh, who we called in our secret language, “Tick Tack Toe.”

Randy turned futilely to Tick Tack Toe during induction, when considering the worst possible outcome. You have a memory of the moon, Toe said. That will never die. You will see the nail of a toe and suddenly that moon will be back with you again.

It was an unsatisfying answer to unsatisfying (and unnecessary) questions. This moon is only here now, mmmmaaaaannnnn. Your memory of a moon is not the same thing as the moon itself. Let’s not pretend. Silly old Toe.    

But the Toe is nothing if not consistent. He tells us that if we love something deeply, we must understand that it is always already broken. The home you love is already lost. Your favorite object is in the midst of disintegration. The people you adore – the fabric you use to tie your world together – are always tumbling away from you.

It’s only our temporal senses that see these things now, here, complete, but like all life, everything is a part a larger process, streams of threads in a tapestry we haven’t got the eyes to see. Everything becomes something else and only vanity or hubris tries to hold things in place.

We make plans, decorate blank spaces on the existential walls, will away the knowledge of danger in order to dream of a better tomorrow, and we are all vain. But we are also pragmatic, if we must be, and see change everywhere. Our bodies whisper to us every day that we are not whole and unbroken.

We return to hair, that insufferable constant. The horror of the stuff, the need to cut, trim, pluck, or burn it away, is a reminder of what we can’t control. It is life in a purest sense, but it’s also a pain in the ass because it grows when so many other parts of our life are in decline. You gain or lose 50 pounds and your hair continues to grow. You are engulfed in personal tragedy, and your hair continues to grow.

The first thing the fascists do when you visit their camps is to shave you, erasing your personal identity as a means of control, and how incredibly frustrated they must be when they learn that even starvation only slows down its growth incrementally. What a bother it must be for them that life finds this way though their impenetrable ideology.  

With all of this in mind – Tick Tack Toe, the necessary and beautiful illusions of life – we open this contest around Julie’s hair. We were told when it came back, it might be changed. Where it was straight, it might have curls, where it used to be brown, it could come back as a shock of white.

Losing the hair had been an admission of our powerlessness over the situation and if we thought of hair at all, it was as a graduation gift, but now that it’s among us, we find it a curious reminder of this weird experience. When something that can’t truly be called yours alone begins growing out of you, what can you really do?

Julie wears hats, beautiful ones with pompoms made by friends. They have become a sort of second head of hair for her until the one she’s wearing decides what it wants to be, but winter won’t last forever, and the hair will – like her blood type – change eventually. With so many unknowns still ahead of us, these two things are certain.

But the timing isn’t. And we’ve gone beyond the timeframe the medical team thought it would take to change the blood type. “We’ve GOT to get your blood to change,” they say, not because of anything life threatening, but because after receiving nearly weekly blood transfusions since the end of July 2021, we’re now in a chronic anemia state.

Every week Julie gets worn down, some weeks more than others depending on when the chemo side effects hit. Every week we drive an hour, get blood drawn, and wait for many hours while alchemists prepare her blood because it must be irradiated, leukocyte depleted, and altered again because of recently formed antibodies that could cause a reaction. It’s another three hours on top of that to receive the blood.

So join us in a bit of fun and take a chance to 1) win prizes and 2) be right! 🙂