I have no problem talking to doctors and nurses because they talk in facts. We talk about the facts of my daughter–her levels, her breathing, her reactions. These are pretty easy things to talk about–after all, I take notes, and I pay attention.
The people that are harder to talk to are the people that are there to see me. The counselors, from various teams–social work, family support, parent support, etc. I really only want to talk to those kind of people for about five minutes, and usually the whole time they are there, I kind of feel like I’m back in school and in trouble for something, and I’m hoping that they will leave so I can have some time alone with Kit. So sometimes I reply with one word answers and look at Kit instead of them, hoping they will be gone when I look back up.
I suspect that their training does not allow for our interactions to be brief and to the point. I don’t want to talk about how I’m feeling with a bunch of strangers with laminated badges.
The other day when Kit was having her cath, I made a huge mistake. I was reading poetry and in the chit chat began talking about this lovely Maria Hummel poem that I’m obsessed with right now:
Days you are sick, we get dressed slow,
find our hats, and ride the train.
We pass a junkyard and the bay,
then a dark tunnel, then a dark tunnel.
You lose your hat. I find it. The train
sighs open at Burlingame,
past dark tons of scrap and water.
I carry you down the black steps.
Burlingame is the size of joy:
a race past bakeries, gold rings
in open black cases. I don’t care
who sees my crooked smile
or what erases it, past the bakery,
when you tire. We ride the blades again
beside the crooked bay. You smile.
I hold you like a hole holds light.
We wear our hats and ride the knives.
They cannot fix you. They try and try.
Tunnel! Into the dark open we go.
Days you are sick, we get dressed slow.
I all but read it to her. Then I filled out my survey, and she took it back from me and blinked at a few answers, and asked me if I MEANT to circle that one? And I said Sure! She dug her phone out of her pocket and speed dialed a counselor and handed me the phone, even as I was saying “I don’t really feel this is the best timing…” (Kit was getting her first cath), and she was saying “Protocol.”
Then I was on the phone with the counselor, who was asking me if I had any sharp things in my house and what I might be planning to do with them. “Nothing! I’m fine! I have a lot of children” (This answer made sense at the time). Then the counselor starts asking me to talk about Kit’s illness, and finally, finally, the social worker had succeeded in getting me to cry. So I cried and handed the phone back to her mid sentence, and said “I can’t.”
But this taught me that it is ok for me to say I can’t do this right now, and it is ok for me Not to cry. When I am at the hospital, I am there to listen, to learn, to talk to doctors and understand so I can make smart choices for my daughter. It isn’t the place for weeping, not at all moments anyway. If I don’t want to weep that day, they’ve got no place prying at me until they find the right phrase that makes me weep. It is ok for me to preserve whatever walls I need there so that I can best advocate for my daughter.
I also learned to never, ever read poetry to social workers.