The End Comes

April 12, 2009

Art is back in the hospital.

Friday was when it happened. Low white blood cells, he started a fever.

Today, Sunday, yes. That is the day today.

He has viral menengitis.

He's ... no words to describe. They are giving him support (drugs), helping it to leave his body.

It could take 24 hours.

It could take a week.

I would say I am scared, only, I .... I don't know what I feel.

I sleep here with him tonight. The kids scattered at friend's houses.

Family reinforcements arrive tomorrow.

I read to him.

I sang to him.

I held his hand.

Now I will sleep for him.

Hoping that when I wake up, I will find it was some kind of really mean joke he'd played on me.

Better that than this reality.

----

April 13

4:45 am

"Can someone come take his vitals please?" I ask.

I ask again, 15 minutes later after no one shows up.

When vitals are taken, his o2 level was 84.

Art lies in his bed, oblivious to the stress he’s causing, eyes open, lids red, the whites of his eyes, looking like a weird colored map of water, rivers painted red instead of blue. Not seeing or hearing a thing. Fingers swollen. Hands swollen, wrists too. Left arm in a constant tremor.

There was a flurry of activity. The nurse, the charge nurse then the doctor show up.
Dr. Taj, his name tag said was young, gave little eye contact, and was straight forward.

“Does he have code order?” he asked. He turns to me, to make eye contact for the first time. “Can we intubate him and give him chest compressions if we need to?”

A code order? I stammer.

“Intubate him (pause) if he codes (shutter). The kids need to say good-bye. We need to keep him here for the kids.” (long sigh)

Holy shit…it’s like I’d practiced these words before.

What’s happening?

Art's leaving.

He's done.

An Xray and an EKG are order.

Art has been sequestered to a negative pressure room. A series of two rooms an outer/hallway room and then his inner hospital room. Viral meningitis (which they think he has) is contagious especially to other immune suppressed patients (people who have low white blood cell counts) A negative pressure room, keeps the germs inside and filters them out.

I leave the room as the portable Xray tech does his job and wait in the outer hallway, I stand next to the EKG guy, waiting for his turn to hook my husband up. I cry.

I follow the EKG guy in, take pictures, and read the printout over his shoulder. He hands me the print out to sign when he’s done. He thinks I knew what I was reading.

I think “Ha…see, I could be a doctor.” I consider signing it but then decided against it. It would be more fun if Art were aware to witness this little ruse.

I think about the kids.

"Honey," I whisper in his ear, after the EKGguy is gone, before the doctor returns “You can go if you need to but… please wait, please wait to say good-bye to the kids.”

The guilt floods in.

I should have had the friend over to video Art leaving life messages to the kids. I should have visited on Saturday with the kids, even if they were sick or no matter how much of a break I needed. I should have, I should have, I should have….

And I realize like I've been hit, NOTHING is perfect. Death doesn’t happen like it does on tv.

Illness doesn’t happen like it does on tv. I knew that.

Sitting here typing with one hand, as my other is a swollen, clenched sweaty fist, I feel it.

This is not perfect. My life with Art is not perfect. It is ending, undone, incomplete, not part of the plan.

We are unfinished.

---

Monday, April 13, 2009

Daytime

our oldest says good-bye

They told me to bring the kids in. They told me to bring the kids in. It’s over and I, I, I just ….

I
feel
nothing.

The hardest part about this... No wait, the right now hardest part about this is watching them grieve. My heart is in shards, little sharp deadly pieces.

Doctors and then Dr. Lill, Art’s doctor, comes in. He used the word

die.

Finally SOMEONE used that word!

Death, even in a hospital is whispered, in euphemisms – passed, gone, left, not there. None of those words speaks the truth. My husband is going to die.

Soon.

And when he does, he will be DEAD. Period.

No euphemizing that!

There will be no one to check my spelling. No one to wait for my call, saying I’m on my way home.

Oh God, I don’t want to be one of those single mothers whose kids are out of control!

There is a Sarah McGloughlin song. Only lyrics I can remember are

Hold on
Hold on to yourself
This is gonna hurt like hell

She’s right. And I know I don’t know what I’m doing.

I stand at this place, knowing I must fall into the gorge. I’ll survive, it’s just right now, I don’t want to go.

I just want to vomit.

----

April 15, 2009

Steve Odefy gave his childhood friend, my husband, his last shave. It was the first time he had ever shaved another man. He did it with a kind of grace and tenderness that made all of us in the room silent.

I am confused. Family and friends come in and out of the room. I'm tired. I don't know what day it is. I don't care. I like this world. It's small and simple. There is a cot for me to sleep on, which I don't use. There is food in the cafeteria for me to buy, which I don't eat. There are people I call and tell. "He's going." I say. And then they are confused.

And there are moments of 50/50 clarity. The moment I meet his parents at the hospital door, they just having arrived from the east coast, weary and frightened. Their oldest son is dying. "I'm so sorry" I sobbed. The moment when we all stood around the bed and repeated the 23rd Psam. The smell of his breath, sickly sweet as his body begins to shut down. The chill of his hands.

I want to photograph all of it. It's the only way l will ever believe that this is really happening.

Because, really, this can't be happening. It just can't.

---

April 16, 2009

Art left this world early this morning.

I watched him take his last breath. I watched his lungs and heart stop. His lungs, the ones with all the cancer in them were the last to give up. Even his heart quit before them. They were amazing lungs.

He changed color and I cried. I was so relieved. I was afraid he would look in death as he did in life. It would have made leaving him hard.

His sister and childhood friend where there as well. I washed his body afterwards.

I am full of relief. Finally, this is over. It's all over. A door has been shut, another one has opened. No more half open, one big toe in, the rest of the body out, door not really closed stuff.

I can move now. Life is not in limbo. It's gone.