Sunday, January 28, 2007

Still Kicking

Steven is curled up in a yellow gray ball on a bed that has now outgrown him.

The nurse is outside the room playing computer games even though it's clear that Steven's shit himself and needs to be changed.

We're all past the point of medical outrage and more interested in the dignity. We bring her in and resist the urge to smash the computer to bits, over her head perhaps. It's not her fault, we're all on edge and looking for a villain. Our villain is AIDS and we can't beat it up or throw any more money at it.

Larry brings Push Ups for Steven and coffee for Mom. I stand there clutching my purse feeling inept.

His liver is shot. There's a number that's supposed to be at 1 and currently is at 12 but has been as high as 24.

Everyone cries and prays for his swift exit but no one will tell him. No one wants to disturb a dying man.

His mother whispers in the hallway that she's being strong for him.

He grits his teeth and says he's got to live for his mother.

I silently respect the dance that is their relationship and say nothing.

Steven will not let go of life without permission from his mother.

I will have to stop visiting soon. I need to remember Steven as the man who would dance all night with me and then help me do my hair in the morning. I need to remember Steven as the man who gave me my first job but refused to fire me even though I was terrible at it, the man who knew I'd be leaving for college soon and wanted to be my friend.

I need to remember that Steven would still be my friend even though he'd sidled around the topic of me having a baby for him and I'd flatly refused, even given him a tongue lashing about adoption... and he was still my friend.

So I answer my cell phone cautiously waiting for the call and hoping my children don't hear the sounds of grown men sobbing because that is worse than the reality.

Larry, Steve and Robert, all casual acquaintances over the years are now men whom I'm loving and rocking and crying with; safe in the asexual love of a gay man; they're safe with someone's mother loving them. It's symbiotic and it's fleeting because we can't maintain these relationships.

We say, "I love you." knowing full well that we love each other because of our common love of Steven slipping away but after the funeral, after we leave the Deep South and the humidity and the Kudzu that will glorify his funeral and memorial service that we will all surely attend.... after all of that is over we will be strangers again. Strangers that once loved one another but cannot put all that energy into a new relationship.

I love Steven so much that I can't wait for him to go. We all agree.

Friday, January 26, 2007


It's hour by hour now.

Adam and Eve are tucked in and almost asleep.

I'm putting on clean clothing and on my way out to say goodbye.

I'm filled with sadness, prayer and relief.


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.

Sunday, January 21, 2007

So Busy...

Football, two birthday parties, one grocery shopping, three meals, a quick stop with Steven and a 6 mile run at 5am.

All on 5 hour's sleep.

I need a good night's sleep.

Today I belong to Adam and Eve and I sleep and snuggle for a few precious moments at noon.

Maybe I should get a job. Then I could tell people I'm too busy to be helpful.

Saturday, January 20, 2007

They'd Better Watch the Fuck Out

10 pm and Steven has a bedsore. His mother just called crying.

No one came to his room for more than 4 hours in a row today. In order to avoid bedsores it's procedure to move each patient every two hours.

I'll cry later, no time right now. I'm having his four physicians paged out of their cozy beds or their hot dates.

No one will sleep tonight. I'm stuck in front of the computer accessing files and waiting on hold because, "no I would not like a call back, I'll wait right here for Doctor GetYourFuckingAssInGear to pick up the phone."

Bedsores are from neglect.

This is unacceptable, back to the pissed off housewife... no more finding my center.

Needed a little humor

I visited Steven and Mom today and I needed to lighten the mood.

I did NOT buy comfortable jeans, I've decided that it's much better to look good... whatever... skip the comments on that one... if you lived in Los Angeles you'd understand.

Tonight is a yoga class and tomorrow a 5 mile run. I will listen to Google's citizen and wash dishes while I wash dishes. Running and yoga both turn my brain off, plus it's something fun I can do with my kids and I do love those guys.

That does NOT mean that I will be washing the dishes though, let's not get crazy!

Stop and Breathe

I have only a few goals today.

I want to purchase a pair of jeans that are comfortable and perhaps not super cute. This is the least likely of all goals to be attained. I realized that I don't own a comfortable pair of jeans but I'm okay with being shallow and looking good. I've reconciled that with myself many years ago.

(you see I'm already admitting defeat)

I want to visit Steven and his mother and show some of the strength that you all show in your comments.

I'm beginning to think that the comments are more insightful and interesting than the blog.

I want to stop clinging to my kids, they're starting to look at me funny.

Um, Mom, you usually only play Uncle Wiggly two times and then it's time to do something else.

Mom, it's okay, I can do this myself.

I'm not a helicopter mom (you know the one's that spin so many circles around their kids that the kids are dazed and confused from being perpetually surrounded by noise and light) but this experience is sending me there.

I will return to being the mother I once was. The mother who understands the blessing of a skinned knee, the mother who tells her son to buck up. The mother who loves them enough to let them grow without shadows looming over them.

I have not added the suspension of judgment to this list. I'm judgmental and it's served me well. Perhaps one day I'll be actualized enough to want to suspend judgment but today is not that day.

The goals are simple. The process may be riddled with pain but I know I can do it.

Thursday, January 18, 2007

Social Security, More Death and Dying

Steven has been in and out of the hospital since November. Really, I'm unsure how they ever sent him home.

I just got off the phone with someone who is in charge of someone in Social work there. Her name is Ellen. She was lovely, I'm hopeful she's competent.

Here's how our conversation went.

ELLEN: Hi Jessica, I'm returning your call regarding Dean.

ME: (voice cracking) Ellen, I'm so glad you called back and I will apologize in advance if anything sounds mean or rude but I'm very frustrated with the social workers you employ.

ELLEN: Go on.

ME: Can you please access Steven's file while we discuss this? Again, I know I'm unbelievably rude but you all have failed Steven in so many ways I really need to be sure that we are on the same page.

ELLEN: mmmm [typing something into her computer]

ME: Would you agree that when a patient has been in the hospital that it is the responsibility of the Social Worker to help fill out complicated forms?

ELLEN: Well that all depends...

ME: Ellen, I've been on the phone with Steven for two hours trying to fill out the Social Security Disability report.

ELLEN: I believe that is something the physician fills out.

ME: Only the second part, maybe the third. Steven can't even tell you what year he had bypass surgery or his Doctors' names. He thinks it was in 1999 and I'm trying to explain to him that it's not possible because my son wasn't even born then...

ELLEN: How can I help?

ME: I need you to get to Steven's room immediately and fill out the rest of these forms. He's entitled to more than what you've pro...

ELLEN: Can I call you if I need help with them?

ME: Yes, but it's really important that you're in the room alone with him because his mother doesn't know he's gay.

ELLEN: [silence]

ME: Okay, whatever, we all want to pretend she doesn't know because, frankly, Steven's a little demented and....

ELLEN: [in a kind and soothing tone] I really do understand.

ME: ...and I'm tired and I'm hungry and every time we fill out these forms Steven cries and so do I and I really need to let you know that I appreciate this and that I'm only mean to you because it's the only way to get anyone to pay attention.

ELLEN: Really Jessica I do understand

ME: I believe you do but there's one more thing

ELLEN: [more silence]

ME: Steven doesn't know he's dying

ELLEN: [a sharp intake of breath]

ME: I kept asking him [now I'm sobbing] 'Honey we need to put down the date of your AIDS diagnosis' and he keeps telling me, insisting that he doesn't have AIDS only HIV but I know that his T Cells are under 100 and that his intake papers for the heart surgery said AIDS and not HIV so I know he has AIDS and we need that diagnosis and...

ELLEN: I'm sure he'll get disability because at this point the Hodgkin's disease is terminal.

ME: [puking in my mouth a little bit]

ELLEN: Would you like a referral to someone to help the family?

ME: No ma'am. I've done this before. Many times.

ELLEN: Would you like to call Steven and tell him I'll be in his room in about 15 to 20 minutes?

ME: Yes.

ELLEN: Is there anything else I can help you with?

ME: You need to know that Steven and his partner will take whatever you give them. That's how he was discharged from the hospital before. I also need to let you know that I'm watching everything and I'm very grateful for what you do. But if you discharge him while he's not ambulatory and don't provide home health care, food and transportation I will personally hold your feet to the fire.

ELLEN: Understood.

ME: Ellen, I know what bouncing is and I write a good letter.

ELLEN: [silence]

ME: I'll just thank you in advance then.

ELLEN: Give him a call and let him know I'm on the way.

ME: Thanks, and call me when you're done.

Today was a shitty day.
Steven is still alive, his mother is in the air and on the way to say goodbye to her second son.
I love who he used to be and the brain he once had.
The dementia makes it all very difficult and because I love his partner so I will continue to help.

If there is anyone who still believes that AIDS is not a death sentence please ask them to email me.

This is a slow and cruel way to die.

This is taking many prisoners.

Tuesday, January 16, 2007

On Death and Dying - Loving and Living

Last night at dinner my husband rolled his eyes once again as someone mentioned the little girl around the corner who died when she was 17 and her car flipped over. We had the date of her death confused with the much littler girl who died at about 6 on Mother's Day and her Mother ultimately committed suicide.

My husband has been untouched by people dying at the wrong age.

Now, someone more devout than I am might say that everyone dies at the right age. They would argue that G-d doesn't make mistakes. I understand the argument, I hear it and I even respect that those are their beliefs but I can't believe that a mother should bury her child.

I'm raising Adam and Eve and I understand with great clarity that the way that I will affect change in the world is to raise two people who are committed to making each day better for someone around them. They don't have to be activists or selfless giving doormats but they need to be kind and aware of their surroundings and their impact on it. I have the double blessing of a boy and girl and for a few moments every day I get to look at the world through their eyes.

This morning I looked at the play yard when I dropped Adam off and I saw it as a scary and overwhelming place. Adam is anxious each Monday (or Tuesday if there is no school on Monday) and when you're a tiny little guy trying to find a friend on a big playground before school I can understand the stress. Now we bring the dog with us on Mondays and the other kids come to us. Adam gets to show off his dog and doesn't have to go looking for a friend.

Eve looks forward to school each day. She runs onto that yard and jumps in line for tetherball. She's actually quite good but even in line she has a lot to do. There are people to talk to, outfits to compliment, hair to braid and the weekend (or evening before) to discuss. My kids are very different people, Eve is the one I understand more, she is more like me. Perhaps that is why I find Adam so fascinating.

I love my children more than anything in the world. If an angel came from heaven and asked me if I'd die this moment to ensure my children have a long and happy life I'd be dead with a handshake.

This brings me back to Jackie, DSteven's mother. I've known Jackie for many years now. We've spoken on the phone for 20 years and we share a deep love for Steven. We both keep his secrets with a wink and a nod because they really aren't very secret, only to him.

I made a weeping Jackie eat and shower two years ago when Steven had a triple bypass. I assured her that her baby would still be there when she returned to the hospital. I promised her that a shower and some food would make her feel better. We both knew that I couldn't make those promises, we both knew that they were prayers and wishes uttered out loud and we both rejoiced when they came true and Jackie was fed and Steven was still alive.

Jackie's eldest son died of AIDS in the late 80's. Jackie survived that, she will survive this. She has two daughters, they all need each other.

I suspect I have needs about all of this, I just don't know what they are and I'm quite certain they won't be met.

I'm very disappointed in Steven and his will. He left nothing to charity and not enough (in my mind) to his partner. APLA has taken care of him for years, this is his opportunity to give back. I'm more than a little shaken that even in death he won't be giving. I know Steven is not a giver, I'd hoped that when he heard the Angel Gabriel call his name, that in his panic to have a last will and testament he would give back to those who worked so tirelessly for him.

He hasn't yet and he likely never will.

It's very difficult loving someone who will die without ever having self actualized. It's a love without judgment that I find very difficult, a love without disdain and without pity.

I also realize that the real tragedy is that Steven is leaving the world without completing what he needed to do. Even the children that I loved and lost understood how to give wholly and freely and how to derive pleasure from that. Steven will die without having given of himself and I pity him even though I don't want to.

I wonder if Jackie, Steven's mother, feels like a failure? I'm not sure she isn't even though that's an unbelievably cruel thing to think and say. I will only say it here with all the anonymity a blog offers.

Sunday, January 14, 2007

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.