Deirdre Neilen, PhD shares a selection from Upstate's literary journal, "The Healing Muse" every Sunday on HealthLink on Air. Neilen is the editor of the annual publication featuring fiction, poetry, essays and visual art focused on themes of medicine, illness, disability and healing.  Read The Healing Muse Cafe Blog.  Order your copy of "The Healing Muse" today!

 

Normal, by Monica Nawrocki

I‘m not sick, but I‘ve been to the hospital forty-seven times in ten weeks.

I am adrift in the bone marrow transplant river, where three currents flow downstream, toward wellness. Medical professionals move quickly in an identifiable pattern with a strong flow. The patient‘s current is generally absorbed by this stronger current. Few resist. But here, close to the banks, are partners, family, friends, caregivers. Our current is irregular and slow. It all but stops at times and gets caught in countless eddies on the edges of the river. We wait. We fetch. We worry. Then we struggle to catch up, like driftwood released from a tangle.

In this stream, there is guilt because we‘re lucky enough not to be the patient. People say, take care of yourself; take time to do things for you. So I do. And the whole time, I wonder what her temperature is.

When my partner first had the Hickman line inserted—running under her skin from her jugular vein and protruding from her chest—I couldn‘t even look at it without feeling light-headed. Now I change the dressing, clean the wound and do the line flush with saline and heparin. Now, it‘s almost . . . normal.

My struggle with the word normal goes way back, most prominently played out in the fact that I am a woman in love with a woman. For years, my mantra has been Normal is just a setting on your dryer. But secretly, I‘m back to liking the word normal, craving it again as I did as a teenager staring into the mirror, wishing for a normal crush.

I like normal temperatures and normal white blood cell counts. I like normal hemoglobin and platelets, and I really like normal neutrophils. I like normal pulse and blood pressure.

I fantasize that there is a normal outside of the bone marrow transplant world and that if we are patient enough, we will get to live there.

Sometimes, though, I worry about the line. You know, that line between healthy normalizing and losing touch with reality. The healthy side of the line allows me to care for my partner‘s Hickman line as if it is normal for her to have a tube the size of an extension cord protruding from her chest. It allows me to calmly tell her to go ahead and take her cyclosporine and her valacyclovir and the fluconazole and also the prednisone as well as the Provera and the ranitidine and yes, the Sulfatrim. Don‘t forget your calcium and magnesium. This is all perfectly normal for someone who is on day fifty-two post-transplant, I tell her. This is what allows me to see the blood pressure machine and thermometers and bins of dressings and bandages as normal things to have around the apartment. It even makes living in an apartment normal when home is a house by a lake on a little island a million emotional miles from here. It allows me to minimize the baldhead, puffy face, shaky hands, the thin, stooped, short of breath body that was once my glowing, energetic partner.

But at what point do I stop normalizing things? When should I start shouting, “Wait. Stop. This is too much.”?

Does anyone know where that line is? Do the people who take care of her even believe such a line exists? Perhaps the constant announcements of Code Blue over the P.A. system, the mutations of humanity in identical beds have caused normal to fade away completely for them.

One day, as my partner chatted with a dermatologist, he looked down and saw blood pooling around the bottom of her I.V. pole. “You‘re bleeding,” he said calmly, and went to get the nurse.
She came, fixed the problem, cleaned up the mess, cracked a joke. The original conversation continued. The staff flowed on as though nothing was out of the ordinary, and my partner, ignoring her anxiety, slipped into the current of someone else‘s certainty.

But I watch these things from the shore, where I have dragged myself out of the river long enough to think about it, write about it. And before I dive back in, I ask myself again, where is that line? How can I make it visible, like the equator on a ten dollar globe? Is it my job to find it? What are the consequences if I don‘t?

I ease myself off the bank, back into the icy, muddy water. I don‘t want her to get too far away, so I push off from this dangerous little eddy and rejoin the slipstream.

It‘s too late to cry, “hold.” She‘s in the current now—there is no escape from the flow of drugs, no pulling away for those connected to the hospital by a line in their jugular.

Sometimes, the struggle seems so important but most days . . . most days, I can see that the floating is the thing.