I'll Tell You Why I'm Pissed

If you've been reading much you'd see that I'm not really all that Pissed Off.

So what is the origin of the Pissed Off Housewife?

AIDS

AIDS pissed me off.

In October of 2006 I realized that my beloved Steven was on his way out. I spent October and November in a rage, sometimes a blind rage and I was desperate to not raise my children in a home filled with anger.

Hiding the rage seemed so important to me.

And Blogging was a good outlet. It never occurred to me that I'd have actual readers, I just wanted to scream about neglect and bouncing and bedsores. I wanted to remind G-d that we still don't have a cure for AIDS and ask why has he forgotten us?

But I now realize that he's never forgotten me and Steven is lovingly wrapped in his arms.

During the slow and agonizing loss of Steven my Mother In Law was diagnosed with Lymphoma, she received the same treatment that my Father had just a few years before.

The Cancer Club. It's a shitty group to belong to.

These last few months have given me hope and strength and joy and love.

When I cried so often that the tears just dried up Kenn sent me emails that made me believe in goodness and I softened and stopped wishing plagues upon the nurses. It amazes me how much those letters touched my life. There are two currently in my purse.

And when the bedsores festered the outrage you all expressed along with me was like a life raft to sanity.

Because no one else could see it all as being wrong and bad.

And in 2007 I'm emerging from a lifetime punctuated in black and white and for the first time ever I'm seeing it in shades of gray. Not everyone is good or bad, many of us (myself included) are both. This is strange for me and new.

When I walked the hallways of Cedars Sinai and demanded that they provide adequate care for a man I loved my husband would remind me on my way out that "A Pissed Off Housewife is most dangerous animal on the planet. You have time and resources to get the job done."

*curtsy*

And here I am. The Pissed Off Housewife, who really isn't all that angry anymore but I assure you it's not because I've accepted defeat.

Cancer and Mouring and Mothering

I miss my husband. He's been gone for over a week now.

He needs to visit his mother who is 7 days into her chemo now and likely feeling ill.

He makes me feel safe and smart and needed and whole. I hope I do the same for him. This is a scary time and I'm still feeling the sting of Steven so I'm definitely over emotional.

After I dropped Adam off at school today I pulled over the car and cried.

Not a little cry.

The kind of crying that gives your stomach a workout, the kind where you stop breathing for a moment and you think you might die but if you don't cry you won't know that you're alive.

Today I cried a lot.

Then I went home, washed my face and called Mrs. D because she always has something to say and she always makes me laugh.

Last night I went to the trunk of Hubby's car and found a bag of Steven's clothing. It's not the right thing to do but I'm keeping it. It's mine.

My father in scuba diving alone in Mexico. The risk he is taking is ridiculous but I guess he needs to live his life as he sees fit.

My husband is 3,000 miles away with his mother who is trying to beat her lymphoma.

I drove my children to school this morning and listened to their discussions with delight. I could see the smiles in their eyes through the rear view mirror.

When Adam and Eve smile the world stops for a moment. They are so pure and whole and joyous that you really do think you're in Eden. Sometimes if you're lucky you'll get a giggle, or a tandem giggle, it's like the birds singing in the morning.

If this sounds like a love letter to my family, that's because it is. All of my days and nights are about giving and loving and living with and for them.

So I shake and cry because I know that my children, those two souls that G-d has let me borrow for this lifetime, those sweet angels are at a precariously high risk of having a blood borne cancer.

I'm terrified.

I squeeze a tiny bit of control back when I run and raise money for LLS. I'm marathoning right now because I've never been so desperate in my life to have a disease cured.

Usually this all doesn't bother me but today I'm sad. I'm profoundly sad and lonely and frightened, sometimes the fundraising makes me feel better, more in control. I'll take a long run in about an hour. That will surely help.

Steven

I've lost my energy to discuss Steven but I kind of have to at this point, right?

Here's where we are.

Steven's mother will not leave his side and I don't blame her.

He's been quite nauseas for the last three days, barely holding down any food.
However, during all of this his T-Cells have actually gone UP.

The physical therapist comes by each and every morning to take him out of bed while he is eating breakfast, the routine never varies, she promises to return and never does.
Meanwhile the bedsores fester.

The social workers no longer come to the room, only their boss comes, this is a good thing.

The nurses are like angels on earth, they flutter about dispensing potions and salves that cut the pain but don't deaden it. The nurses are my heroes.

The doctors meet with one another and with us, not his real family but a ragtag group of West Hollywood fags, hags and lesbians, some hyper-educated, some barely literate. It is not always the members of MENSA in this group that make the most sense. The Doctors are sure in their positions that they will not be sued, we will not tell their secrets and they will tell all of Steven's. They remind us that Steven will be more comfortable with palliative care, in a hospice perhaps or even home hospice. We whip out the paper that Steven prepared in his already ailing and shaky script where he wants every treatment possible. He is no where near accepting of death, this will be a life cut short as Steven (as of this writing) is unprepared for his final chapter.

I would be too if I was 43.

One of the social workers told Steven's mother he had AIDS. It slipped, she didn't mean to and immediately recognized her grave error. She knew, she's sadder and slower and a little angry with all of us who have kept his secret and I don't blame her. I tiptoe around her because whatever she feels, however she behaves and whatever she wants is right. Steven's mother is suffering every ache with him. This is the child she brought into the world. It is wrong for her to see him out of it. I remind our group of this harsh reality, the parents understand, the rest of them shrug and look at us a little funny. They don't understand why we aren't annoyed with Steven's mother for her bad behavior. We don't understand how she is so strong.

They wanted to discharge Steven today. I faxed a letter to the social worker and CFO of the hospital outlining the dangers of sending home a man who lives with a partner who works full time in a tri-level townhouse with no access to food or medicine. I asked them if they'd made arrangements for home healthcare and if they hadn't would they please reconsider. I let them know that no one in the close or extended network would pick him up from the hospital so a medical transport company would need to do it and see to it that he was able to walk into his home.

They are now looking at other options.

A few moments before I sat down to write they were giving him Xanax and taking his blood pressure. It is currently 135/37.

I went for a brief visit and noticed Steven's Mom lovingly kissing her son's forehead. I can't kiss him anymore, the herpes is all over his face and oozes puss and blood. I love him so much but for me he's the boy in the bubble as the Purell in the pump on the wall will not save me from HIV.

There's always an ache but I've known for 18 of the 20 years we've been friends that I'd outlive Steven. I was surprised when he was around after 5 years and then 10 turned into 15 and here were are today. This is much like saying goodbye to an elderly relative. You know it's coming and you pray for dignity and a spot in heaven.

I pray that this blog, that this account of a young man's death will resonate with those who freely have unprotected sex, men, women, straight, gay, this is a gruesome death; it's slow and it's evil.

That's my preaching for the day.

He's 43 and He's Dying

Steven is 43 years old and he's dying.

I was at the hospital with him and his partner last night for hours.

In December of 1992 we buried Dean's first love, Rrank. Frank was 35 at the time. He died from PCP Pneumonia. Frank's father spit on his grave and tried to kill Frank's first love who had, "led him down the path to Sodom..."

I'd heard about families like that before but I'd never seen one in action. I still don't have words for it.

Steven's eyes are still alive but everything else is failing him. Last night he made his will. He dictated it to me. I hope and pray his mother and his partner don't fight over anything. I don't want to be pulled into the middle more than I already am. I love them all and I pray that in their pain they are able to continue with goodness.

I'm numb all over.

He has AIDS, he had a heart bypass last winter and now Hodgkin's disease.

His stomach looks like a malnourished Ethiopian child, it's his liver poking out.

A little part of me dies when I walk into the hospital room. This will be my last friend that I lose at a ridiculously young age. His partner now is HIV negative and I love him very much. All of my AIDS friends have passed and Steven is walking the tightrope between life and death.

I hope the fall is quick and painless but because I know the look of death I see that it's not imminent and there is much pain and suffering on the horizon for Steven, for his mother, for his partner and all of us that love him.

I'm a 36 year old woman and I know how to arrange a funeral for many religions. I know that your eyes cloud over before AIDS takes you. I know that a kiss on the forehead is like the touch of an angel because no one else will touch someone with AIDS.

I know more than I want to know.

I'm frighteningly inarticulate. This is just awful. This is wrong.

I'm wondering why G-d would let a mother bury her son.