Saturday, February 02, 2013

A Day in the Life...

A tense ride on 93-S to Boston. Why at 10:00 am is there such a backup? Tom alternates between vomiting, moaning, and falling asleep. We try to hold his hand while he vomits. We try to make sure he’s breathing, that it’s genuine dozing, not unconsciousness. Not that he’s ever slipped into unconsciousness on our watch, but you never know.

It all started a couple days ago with a peculiar headache. Localized to above the left eye, this came on out of nowhere. While it was uncomfortable, Tom was able to go to school and also get to a couple of appointments including physical therapy. But by Friday morning, the pain became intense, the intensity brought nausea, and then vomiting. Early morning call to Boston, they say to bring him in to the clinic office (as opposed to the ED, where he’d sit for too long).

High blood pressure was suspect. Now Tom has never had problems with either a headaches or high BP until this week, so this is all new, and frankly, quite scary. One of the first things Tom whispered to me in the early morning was, “do you think I’m having an aneurism?”

Dear God, I flippin’ hope not.

Hours later, Tom is resting in a room on 10 South, his usual floor. And to think that just three days previous, he and I were visiting a friend recovering from surgery on the Northwest wing of this same floor. I know Tom was enjoying being a visitor for a change, instead of a patient. Now he’s the one in the bed. Again.

Oh look, a uniformed officer stands guard at a patient’s doorway in the room across the hall. It’s not the first time I’ve seen a cop or hospital security standing in the doorway of a room, either on a floor or in the ED, you know, big city hospital and all that. (It’s never clear though, exactly who is being guarded, the patient, or everyone else and darn-it, I’m too polite to stare.)

I’ve been in this place many times, to paraphrase Leonard Cohen, “I know these rooms, I’ve walked these floors”. My moods are variable, and yesterday I was more depressed and on edge. I am taking a lunch break in the lobby, and I stare with half-focus at the constant stream of people walking in all directions, to and from elevators, main doors, the CVS, etc. 

I guess they all fall into different categories, but there are certain visitors that cause me to drop my gaze, avoiding eye contact. These are the moms and dads with paper name labels stuck to their shirts. These labels have just a last name, and it means that they have a child undergoing surgery upstairs on the third floor. Sometimes these parents look nervous; actually they almost always look nervous at some level. But there’s another look I sometimes see, something I read as their whole body shuffles along in slow motion. They are shell-shocked. These are the people I can’t bear to watch, because I see myself reflected in their disorientation, in their fear, in their exhaustion. I don’t want to be reminded of my own pain. 

I definitely have no problem reaching out to someone who needs help. I’ve joined in the 60 second elevator commiseration thing with random people. I’ve had long conversations with other parents in the surgical waiting room. I’ve compared notes with a dad in the common kitchen while we were searching for the last grape Popsicle – 

Me: “yeah, my kid has a nasty GI infection”

Him: “my kid has no stomach” (said with no anger, just matter-of-fact grace).

"Watching the Machine" Sculpture by George Rhoads. Manhattan, NY. - Beyond My Ken.
But when I’m really in the tense frame of mind, I have to be selfish and turn inwards. As I side-step the stroller-bound kidlets staring up with mouths agape at the somewhat annoying perpetual motion machine, as it clanks and chimes, clacks and dings, I get weary of the sameness of the routine. As this huge sculpture perpetually entertains new crop of patients and their families – I just want it to be all over with – I want at least a diagnosis, and at most – to not be here at all.

I feel trapped inside that huge 12 x 6 x 14 cage of wires, balls and brightly colored shapes. I’m moving on a path not of my own design, and there’s no natural conclusion, just the same thing, over and over. Or maybe another way to look at it, the path is NOT clearly laid out, the way it is in George Rhoads’ sculptures. Sometimes it feels more like Disney World’s Space Mountain. Huge dips and swirls, but it’s all in the dark. I don’t know that’s ahead.

I don’t know which is worse.


Mrs A said...

I understand. I have a different medical story, but the same feelings. You put them to words beautifully.

Chris said...

It grieves me to read of your precious son's trouble. It is not right that a young person should suffer such burdens.

Next time you see that big square cage that passes for sculpture, resist seeing yourself trapped inside and imagine a miracle, weightless, balanced, and poised for flight.

The following story illustrates: Alexander Calder was an American wire sculptor - the "father" of fantastic and complicated giant mobiles that defied gravity. He was also the cause of much distress among gallery owners who booked shows with him, only to have him consistently show up a few hours before the show...empty handed. BUT he had a roll of wire and pliers in his pocket, and that was all he needed to compose his art. Every show was an original, designed on the spot.

Calder himself didn't know what the mobiles would be until he saw the gallery space and began working. Please keep yourself out of the square cage, Mary. Miracles and the bright hope of discovery do not exist at right angle corners, they arise from bits of wire and pliers in our pockets.