Intensive Care Lessons

The first time I was in an Intensive Care waiting room I was 18 years old. It was a Wednesday night in July. I had come home from ballet class and my mother called to say that my father was on the living room floor and she could not wake him up. An hour later the family was gathered in the Intensive Care waiting room at Alleghney General Hospital on Pittsburgh's Northside. My father had had a stroke; he never regained consciousness, and within a few days he was dead. My strongest memories of those few days are the details of that small room and the strangers with whom my family shared that space.

Now, sadly, many years later, I have become a kind of expert on these rooms. Over these years, I have waited for and watched as four brothers and sisters died, and I have learned many things from Intensive Care.

I know how a hospital works and how to work one. I know what to pack and how to dress for this experience. I know what to say to nurses and what not to say to doctors. Like a traveling salesman who knows exactly what hotel room to book in any city or how to create an office in an airplane seat, I know how to "do" Intensive Care.

I have thought, in my more practical moments, that I might write a guide to the practicalities of the ICU, ways of making this difficult experience less stressful. In my more bitter moments I have thought of writing a critical piece lambasting medical personnel and the business part of hospitals for what sometimes is less than humane policy. I have even made lists to help me organize and give order to the chaotic experience of the Intensive Care waiting room.

Physically, most of these rooms are the same: small sitting rooms with an adjoining private bath. There is a TV that is always on and there is a black board and a phone on the wall. Usually there is a round table for eating and a coffee table with old magazines. Once you enter this room nothing else exists. Your world becomes the patient and the four, fifteen minute intervals that you can see him or her. There is no visiting in the regular sense; We are waiters, not visitors in Intensive Care. Those who visit intensive care wait for doctors, wait for news, wait for visiting times, wait for other family to arrive, wait for phone calls, wait for answers and wait to, someday, take another full breath again.

Among the practical advice I might share is the etiquette; how to live among the strangers you meet in this room. You will spend hours and days with them and there is a code of behavior: Take accurate messages, don't hog the phone, you can openly eavesdrop but don't interrupt. You may bring sweets to share and take a turn making coffee, but never ever offer hope to another family. That is their business. Yours is yours. This is a life raft of sorts, and you must be careful in this small space where everyone is filled with fear and tension.

If I did give advice to a newcomer to ICU I’d provide a primer on terminology. There are so many code words ( "codes" being one of them) and specialized terms. You listen to medical explanations and become conversant with medical jargon that is both meaningful and meaningless: "Counts are up (or down)", checking "N.G.'s" platelets, and vitals." You care about all of these things intensely and you don't really give a damn. Will he live? Will she die?

There is also a lesson on human relations I have learned in ICU, an insightful paradox I have observed over and over in my days in these waiting rooms. At the very time when a person - or a family - must turn fully inward to care for themselves and to will the survival of their loved one, there also emerges a most generous compassion. I have seen race, class and age differences dissolve instantly. I have watched people change diapers and tires for, and share food and fears with, others who, in any other setting, might be spurned or shunned.

But these are not the real lesson of the ICU waiting room. The real lesson is something that is harder to put in a handbook. Each time I sit for days or nights (they are the same) in Intensive Care, I relearn this. Sometimes I wonder if that is why I have to go back. I'm still trying to get the lesson.

This big lesson is not about medicine or any scientific fact. It’s about relativity and priorities. I have seen it each time as the details of “life” are left outside the ICU door. Most of what we care about when we are engaged in the rest of our lives, in what we erroneously think of as "real" - that is, the life we were living before we got the call that said, "Come to the hospital" - stops at this doorway. What people in Intensive Care waiting rooms know with certainty is that this is real life, not what we left at home by the phone.

I also know that few of us are wise enough to learn from someone else's experience and so we live our lives as if the day-to-day is real and that we will have time to do things later. It's not until that phone call and it is your mother/sister/brother or child that you get to see how fast "later" can show up.

The big lesson of Intensive Care is just what doesn't matter after all. For example: grade point average, where you went to school, what you drive, credit rating, house size, annual income, clothes and not even work. No one in Intensive Care talks of these things.

And so in one screech of tires, one lump, one scream, or one unexpected bit of blood, priorities change. In a single afternoon in Intensive Care, watching life drain out of someone you love, you get it.

It would be a gift to package the power of this perspective changing experience, but it doesn't work that way. I have tried, but it's a slippery lesson. It only comes when it does and only when we are open to it.