34 (And Feeling Asphyxiated)

“Mom are you sure you’re okay?”  I kept my eyes on the road ahead of me but glanced over at my mother, who was shaking and lowering her head, searching for something on the floor of her cluttered, tan-colored minivan.  It was dark, early evening,  November of 2011.

“Yeah I’m okay,” she replied shakily.  ”I need a bag or something, I’m gonna spit up.”  We were on our way to Wake-Med Hospital in Raleigh, North Carolina, to the emergency department.  My sisters and I had threatened to tell my mom’s religious congregation she was ignoring her health problems if she didn’t go.  She’d been having trouble breathing for months, health issues for years.  Lately she’d been unable to walk up stairs well, and opted for those power-chairs at the market.  We’d told her she had to go.  She reluctantly agreed.

I am horrible with directions and I don’t like to drive.  My mother was supposed to be leading the way to the ED.  We’d been driving in circles for about an hour, the hospital was 15 minutes away.  My mother was demented and couldn’t tell where we were or how long we’d been gone.  I didn’t realize it at first but as I passed the same gas station for the third time, I knew.  I looked over to my mom, who was vomiting.  We’d stopped at Panera (her request) and she was using a bag to cover her mouth.

“Mom I’m going to pull into the gas station.”  I pulled over and got out and walked over to her.  She was bent in half, vomiting into the bag for what seemed like 5 minutes.  I wiped her face and took the bag and she continued to vomit outside the car.  For some reason I wasn’t nervous.  I’d gone into caretaker mode.

“You okay now?”  She looked straight up at me as though she had no idea why I was asking.  Her eyes rolled around in her head and she kept moving her lips and teeth.  Her voice was shaky, as though she was always about to laugh.

“Yee-eeesss.  I don’t know why I’m so sick!”  She laughed and shut the door.  I cleaned out the floor of the van as well as I could have given the situation and we made our way.  Finally found the hospital 20 minutes later.  Got to the ED and they admitted her immediately.  We sat in a cold, blue room for hours.  My mom rested on a gurney with wires and tubes attached to her.  The residents were pretty sure it was her heart.  We stayed in the ED for about 4 hours before she was transferred to The Heart Center in another part of Raleigh.

At the heart center we were informed that various tests had been scheduled for my mom.  She’s so healthy they said, we can’t see why she should be so sick.  Everything checks out they said, we aren’t sure yet what this could be.

I kept my sisters in North Carolina and the one in Connecticut, abreast of what we were doing.  I called my daughters and told them I was with Gramma at the hospital and I’d see them soon.  We were in the hospital for four days before I went home to stay overnight, I hadn’t wanted to leave the hospital and my mom didn’t want me to.

I was at home when a doctor called me.

“Hi, Kimberley I’m calling from The Heart Center here with your mom.  She’d like it if you could come back, umm…there’s something she’d like to talk with only you about.  She doesn’t want anyone else to come.”  I wasn’t happy.  Wasn’t upset.  Wasn’t excited.  I just was.  Finally going to get my mom some help.

I arrived at WakeMed and met my mom and a resident in another area of The Heart Center.  My mom sat on a cold, vinyl blue chair to my right, her curly, brown wig a mess, framing her tired face.  Her chin was in her hands and she had that familiar, “I don’t care about my life” look on.  She looked so tiny and old, and she was only 54.  The resident stood to my left.  She was my age, short.  She smiled.

So she said, the tests have come back and we’ve found out that your mom is HIV positive.

HIV positive.  Like AIDS?

The resident went on.  Your mom can’t breathe because she’s infected with pneumocystis pneumonia, or PCP.  It’s sort of like thrush in her mouth and throat, and that’s why she can’t taste very well.  I remember wondering here if PCP is contagious, and worrying about my kids.

You don’t need to worry about having kissed her or anything, she’d read my mind, but your mom is very sick right now.  She’s going to be transferred to Infectious Diseases and she’ll have more tests done over the next few weeks.

“Okay,” I answered.  Didn’t really know what else to say.  ”Do you know her CD4 count?’  I knew a bit about AIDS at the time.

My father died with AIDS in 1994.  I retrieved his death certificate when I was 16, when my family moved back to CT and I finally could.  I read it and it said the cause of death was coronary asphyxiation brought on by intravenous drug use and exacerbated by AIDS.  I’d found out a bit about AIDS then but that had been a long time ago.  I just remembered that the CD4 count was important, that if it was less than 200 my mom was likely dying.  It should be between 500-1500 in a healthy person.

“We don’t know that yet because it takes a few days to get those results from the lab.  We’ve sent it out and we’ll let you know as soon as we hear back.”  Then there were lots of questions about timing, about how she could have contracted AIDS (likely from my father or her second husband), about whether I or my siblings were in danger.  In the end the doctors felt she’d had AIDS for over 10 years, that she’d been infected some time after the birth of my youngest sister in 1998.

“Okay,” I repeated.  Then my baby question, that I felt like a baby for asking:  ”Is my mom dying?”

And here’s the part I hate.  I know it’s no one’s fault, I don’t blame anyone.  But she said, and they all said: no.  You’re mom’s not dying!  It’s 2011, people in the United States don’t die of AIDS as they used to.  We know so much more!  There is so much we can do!  Your mother has a healthy lifestyle!  She can make it!

I’d forgotten to mention to them that my mom probably wanted to die.  That she wasn’t going to fight.  That I was her only support, and I am a single mom myself, and I barely have answers for my children.  I forgot to say that and if I had we probably all could have accepted the fact that they were losing a patient.

Instead I believed them.  I believed them.  I never for once thought my mom was dying until I climbed onto the gurney beside her on April 12, 2012, and laid my head on her chest and listened for her heart that was no longer beating.  Not sure if I believed it then either.

When we were wheeled back to my mother’s room she laid down on the bed and looked out the window.  We were silent.  I looked at her.  There was a lot I wanted to say but my mother wasn’t very expressive and I didn’t know how to approach her.

I asked her, “Are you scared?”

“No,” she answered quickly.  ”I don’t care if I die.”  She said it very matter-of-factly.

Don’t say that Mom, I said.

She meant it.  I wish I’d understood that.

Don’t go home and tell the kids, she said.  Just tell them I’m sick and it’s my heart and they don’t exactly know what’s wrong.

What about your sisters?  I asked.

Don’t tell them, Kim.  I will tell everyone but not right now.  I don’t want anyone to know my business.  I promised her I wouldn’t say anything to anyone.  All my life I’d kept my mom’s secrets and I wasn’t about to stop now, when I knew she needed someone.

We stayed two more weeks, three total.  Sometimes the kids came and sometimes I visited them at home.  My younger sisters who were 17 and 13 at the time, also took turns staying the night.

Before we left the lab results came in, the CD4 count was reported.

Anything under 200 means end-stage AIDS.

My mom’s count was 34.  34.  34.  34.  34.

Thirty-four.

I stopped listening to the doctors and felt everything, from my brain down, shift and slide down to my feet.  I melted.  My own body sucked my insides out.  Hearing that number was, and is, and will always be, the single greatest disappointment of my life.  When people kept asking me if I was “sad” about my mom dying I’d answer no, I’m not sad, I’m disappointed.  I’m let down.

I was standing on an already tattered, weathered rug and someone pulled it out from under me.

I thought of my baby sister who was only thirteen, my baby brother who was only 15, my sisters who were 17, 21, and 26.  I thought of my mom’s own sisters and how devastated they’d be.  I thought of all my mom’s friends and family who loved her.  We were all going to lose Irene.

And I still didn’t believe it.  I know I should have, I wish I had.  I wish I’d convinced myself that she was dying.  I was so able to say it, to form the sentences.  But in my heart I knew there would be a miracle.  How many times had Irene been down and shot up again, seemingly from nowhere?!

No way she’s dying.  She’s going to beat this and pull through, and when her CD4 count comes up I’m going to tell my sisters and brother and her sisters whether or not she wants me to.  They should know.

I am so sorry that I didn’t tell everyone sooner.  I honestly didn’t think she was dying, I didn’t want my mom to feel embarrassed or ashamed – you know how sensitive she is.  Was.  I wish I had told you all so you could have said goodbye more properly.  I apologize, it was my first time dealing with that sort of issue, I know better now.  I will do better next time.  I love you.

Kimberley