Clipboards in the Waiting Room

March 29, 2015

This week there were two clipboards in the waiting room.

The "clipboards" are the new cancer patients.  They get a clipboard and a stack of forms to complete.  I recognize the wide-eyed, vacant look in their eyes.  That was me a few weeks ago.  That was us.  Now everyone in the office knows our names.

We were the new clipboard family six weeks ago.  John, Jessica, Alex, and I were all together.  The paperwork is always my job.  Jessica and John found a place to sit.  Jessica found a bench, where she could literally and figuratively attach herself to her brother.

Cancer.  The word is terrifying.  Worse than Voldemort.  Maybe we should say "the disease that must not be named."  But then we'd give it even more power than it already has.

Cancer.  The word that turns your entire world upside down in an instant.

The day that we were the clipboard family I filled out the forms.  Jessica sat next to her brother.  He fell asleep, sitting up.  She tried to get him to lean his head on her; tried to make him more comfortable.  He was sleeping to escape.  We were awake, but it felt like we were asleep.

He actually started to snore, which made us laugh.  We were grateful, in a way, that he was asleep.  But then we were worried, too.  Was he sleeping from stress, or because he was so sick?  He seemed to be getting sicker by the day.  Maybe he was sleeping to avoid feeling our fear, and our stress.  We were trying to be brave for him, but Alex always knows how we feel.  I think sometimes he's like an empath - he always knows what I'm trying to hide.

So how do you explain to a 24 year old man, a man who happens to have autism and to be almost completely nonverbal, how do you explain to him that he has a life-threatening illness?  We did what we always do.  We told him the truth.  We explained the best we could.  And we willed him to trust us.

But back to the clipboards.  I filled out our paperwork that first day, and then I watched the room.  We arrived early for our appointment, because that's what we always do.  We are considerate, even when we have cancer.  (And yes, it's "we."  The cancer is in Alex's body, but we are here to do battle with him.  We would take it from him, take it over for him, if we could.  John, Jessica, and I waging an epic battle with one another to see who would get to stand in Alex's place.)

So I watched the room.  There was one other "clipboard" that day.  The waiting room was crowded.  The office was buzzing as people moved about.  Our appointment was over an hour late.  Unexpected delays, but the nurse checked on us and apologized.  But what can you do?  Our appointment was a matter of life and death, but so was everyone else's.  Perhaps we had to wait because someone else was closer to death at that point than we were.  Alex snored, we fidgeted, the clock ticked slowly.

I watched. I wanted to see how things operated.  People walked in and were greeted by name.  They got a piece of paper (no clipboard after the first visit) and took a seat.  They got coffee and cookies.  Then someone came out and called a name.  The patient went back, but returned a short time later and sat down again.  A short time later, they got called again.  Then they disappeared.  I watched and tried to see how things worked.  I tried to feel the atmosphere of the room.  It felt safe.  It felt calm.  Those of us with the clipboards were the most frightened.  The receptionists, nurses, and technicians knew everyone by name and greeted them like old friends.  Some people were there alone; others with friends or family.  No family quite like ours.  The patients were older than Alex; almost exclusively middle aged or elderly.  And no one with a developmental disability.

Finally, Alex's name was called.  We all went back.  We started to learn the dance.  Step on the scale, have your blood drawn, get ushered to a room, wait again.

And now we are no longer the clipboard family.  We walk in and are greeted warmly.  Alex picks out his cookie right away and sits down.  "I just put new cookies in the basket," says Stacy.  After Alex's blood draw, the phlebotomist points out new treats in the basket.  I tell her he already had one.  "He can have as many as he wants," she smiles.  (When you have a developmental disability, people really like to give you extra treats.)  We know the routine.  Alex smiles at us.  He is anxious, but it's not the same.  He does not sleep in the waiting room.  We all know that this place that terrified us that first day is the place that will save us.