I notice that this blog still gets a good amount of hits each day.
Who are you?
And where have you come from?
Friday, November 30, 2007
Monday, October 1, 2007
Start at the Beginning
Not so much a blog but a chronicle of a moment in my life that can neither be deleted nor added to.
Start at the beginning and read them in this order.
First
Second
Third
Fourth
Fifth
Sixth
Seventh
Eighth
Ninth
Tenth
Eleventh
Twelfth
Thirteenth
And then Steven died
And There was Nothing
If you've read all this you'll see there are no heroes, no evil, no good resolutions and no ending.
There is one dead man, one grieving mother, one abandoned parter and a collection of friends who come together and drift apart like ripples in the water.
This weekend I spoke to some of them and it left me empty.
I'm going to keep running but it's not really for Steven at this point. It's out of terror for anyone who will be living this.
Right now someone is.
Start at the beginning and read them in this order.
First
Second
Third
Fourth
Fifth
Sixth
Seventh
Eighth
Ninth
Tenth
Eleventh
Twelfth
Thirteenth
And then Steven died
And There was Nothing
If you've read all this you'll see there are no heroes, no evil, no good resolutions and no ending.
There is one dead man, one grieving mother, one abandoned parter and a collection of friends who come together and drift apart like ripples in the water.
This weekend I spoke to some of them and it left me empty.
I'm going to keep running but it's not really for Steven at this point. It's out of terror for anyone who will be living this.
Right now someone is.
Thursday, July 12, 2007
Dipping a Toe in the Water
Well, this blog is done.
It sort of has to be becuase there's too much ache in it.
As the time has passed I realize that nothing I've said needs to be anonymous. Steven was a good and kind person, flawed as we all are, but someone worth knowing and someone worth talking about.
I deleted everything but the "Dean" posts and felt finished until I was on the phone with a girlfriend the other day and I was kind of complaining about my sluggishness and my weight (I've put on about 5 pounds and stopped running).
She asked me why I stopped running.
And I didn't really have an answer.
Because I wasn't ever running toward something I was definitely running away. And with Steven's illness and death I was so overwhelmed and so angry at so many different people that if I didn't run I might have screamed and hit and punched someone.
Which, in retrospect, some people might have deserved.
But this week I started running again.
The long runs, the ones over 5 miles where you fairly leap off the ground and your chest burns and your ankles pound and you think you might fall over and die.
But around mile two something washes over you and your ankles are strong and your back is straight but not rigid and your lungs are full and clear.
And you're a runner again.
But you aren't running away from anything because life is pretty good even when people you love aren't here any more.
So here's Steven's smile before his hair fell out and his skin before it yellowed.
And here's the salon that brought us all together and was a source of great pride for Steven.
The obituary is here.
And I miss him and the crazy little group that surrounded him because 44 years was a rip off.
We deserved a little more.
I'll leave this up because deleting it seems wrong and I've changed the names because none of us need to be ashamed of who we are or how we behaved.
We all did the best we could.
xoxo
Jess
It sort of has to be becuase there's too much ache in it.
As the time has passed I realize that nothing I've said needs to be anonymous. Steven was a good and kind person, flawed as we all are, but someone worth knowing and someone worth talking about.
I deleted everything but the "Dean" posts and felt finished until I was on the phone with a girlfriend the other day and I was kind of complaining about my sluggishness and my weight (I've put on about 5 pounds and stopped running).
She asked me why I stopped running.
And I didn't really have an answer.
Because I wasn't ever running toward something I was definitely running away. And with Steven's illness and death I was so overwhelmed and so angry at so many different people that if I didn't run I might have screamed and hit and punched someone.
Which, in retrospect, some people might have deserved.
But this week I started running again.
The long runs, the ones over 5 miles where you fairly leap off the ground and your chest burns and your ankles pound and you think you might fall over and die.
But around mile two something washes over you and your ankles are strong and your back is straight but not rigid and your lungs are full and clear.
And you're a runner again.
But you aren't running away from anything because life is pretty good even when people you love aren't here any more.
So here's Steven's smile before his hair fell out and his skin before it yellowed.
And here's the salon that brought us all together and was a source of great pride for Steven.
The obituary is here.
And I miss him and the crazy little group that surrounded him because 44 years was a rip off.
We deserved a little more.
I'll leave this up because deleting it seems wrong and I've changed the names because none of us need to be ashamed of who we are or how we behaved.
We all did the best we could.
xoxo
Jess
Wednesday, May 30, 2007
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.
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.
Wednesday, May 9, 2007
Monday, May 7, 2007
Unchanged
Larry emails wondering if Steven could have possibly died of Hodgkin's Disease and the AIDS was a mistake.
Steven's partner calls because Jackie's being ripped off by the guy who bought Steven's business (no big surprise).
Heidi calls because she thinks Steven's partner needs help, "Steven trusted you with money you know." "Heidi, he was demented for the last two years, it was doomed." I tell her.
The dancing queens want to know if Eve wants a makeover for some E! show. I try being polite and then explain to them that Hubby would kick their collective asses if they tart her up. She's only 8, I explain, they're exasperated and think we're nuts.
I agree to have cocktails at Rage Thursday night.
I can't bring myself to call the family, the blood family.
I am utterly stunned that history is rewriting itself.
He had AIDS, his brain was gobbled up by a retrovirus. He was a good man but not a saint and he kept secrets from all of you because apparently the truth is too fucking much to handle.
I'm not answering my phone any more.
Steven's partner calls because Jackie's being ripped off by the guy who bought Steven's business (no big surprise).
Heidi calls because she thinks Steven's partner needs help, "Steven trusted you with money you know." "Heidi, he was demented for the last two years, it was doomed." I tell her.
The dancing queens want to know if Eve wants a makeover for some E! show. I try being polite and then explain to them that Hubby would kick their collective asses if they tart her up. She's only 8, I explain, they're exasperated and think we're nuts.
I agree to have cocktails at Rage Thursday night.
I can't bring myself to call the family, the blood family.
I am utterly stunned that history is rewriting itself.
He had AIDS, his brain was gobbled up by a retrovirus. He was a good man but not a saint and he kept secrets from all of you because apparently the truth is too fucking much to handle.
I'm not answering my phone any more.
Wednesday, May 2, 2007
Kenn
When my heart was breaking into a million pieces Kenn stepped up with emails and support the likes of which no one else could have offered.
Please send him some love.
And prayers for his brother Craig.
Which automatically include prayers for his mother and his sisters too.
Every so often I read his words and I hope and pray I can be like his mother.
The world is better because of Kenn, read and you'll see a passionate man with surreal strength.
Please send him some love.
And prayers for his brother Craig.
Which automatically include prayers for his mother and his sisters too.
Every so often I read his words and I hope and pray I can be like his mother.
The world is better because of Kenn, read and you'll see a passionate man with surreal strength.
Tuesday, April 10, 2007
Newsflash!
Steven died of AIDS.
You can read about it here and here and here and here and here and here and here and here and here and here and here and here and here and here
And finally he died.
Finally his frail old-before-its-time body quit on us all and Steven became free and young and unencumbered once again.
And I breathed a sigh of relief for him.
So you can imagine that in my daily life the word AIDS rolled off my lips with great frequency.
Here's the text message I got a moment ago:
I hope and pray he wasn't a lover of Steven's. I don't think I have it in me.
The good news is that he can blow dry my hair like nobody's business.
Ahh, for an hour I'll be a fag hag.
You can read about it here and here and here and here and here and here and here and here and here and here and here and here and here and here
And finally he died.
Finally his frail old-before-its-time body quit on us all and Steven became free and young and unencumbered once again.
And I breathed a sigh of relief for him.
So you can imagine that in my daily life the word AIDS rolled off my lips with great frequency.
Here's the text message I got a moment ago:
Hi Housewife,And because I'm me I texted back:
What number did you find Steven on?
Tell me something...
Steven, what was the cause of death?
I never asked about the illness?
Did Chloe figure out the probate?
I hope so...
When you have time....
Love
(an incredibly wonderful man)
And it appears I will have a lunch guest today.
AIDS
Probate is a long process, I'm uninvolved
If you need a martini with lunch please come over, I have a shaker.
I hope and pray he wasn't a lover of Steven's. I don't think I have it in me.
The good news is that he can blow dry my hair like nobody's business.
Ahh, for an hour I'll be a fag hag.
Wednesday, February 28, 2007
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.
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.
Thursday, February 22, 2007
How can I forget a friend?????
In the end of January 2003 Steven's partner succumbed to AIDS.
His name was Frank and we were friends, we had been for 6 years but we weren't as close as Steven and I were.
I'm trying not to sob and vomit because I can't remember Frank's last name.
I know it's stupid but I can't remember and I'm furious that someone so decent and kind can't be remembered.
I'm trying to contain my venom today but it's been precious few weeks and I'm feeling terribly abandoned.
My father is on his way over to help with the kiddos.
When Hubby is away I feel the loneliness of no more Steven even more intensely.
I'm so glad my Dad is on the way.
My mother in law started Chemo today.
I hope G-d didn't forget about us.
His name was Frank and we were friends, we had been for 6 years but we weren't as close as Steven and I were.
I'm trying not to sob and vomit because I can't remember Frank's last name.
I know it's stupid but I can't remember and I'm furious that someone so decent and kind can't be remembered.
I'm trying to contain my venom today but it's been precious few weeks and I'm feeling terribly abandoned.
My father is on his way over to help with the kiddos.
When Hubby is away I feel the loneliness of no more Steven even more intensely.
I'm so glad my Dad is on the way.
My mother in law started Chemo today.
I hope G-d didn't forget about us.
Wednesday, February 21, 2007
I Called Steven's Mom Today
I wanted to hear that deep south swampy accent say, "I love you" and she didn't disappoint.
We are inexorably bound.
We are inexorably bound.
Monday, February 12, 2007
The Funeral Was "Beautiful" - The Chemo Begins Today
Apparently it was a beautiful funeral with a baby blue casket and a lot of flowers.
Steven's entire graduating High School class showed up. It was 90 minutes long and the town virtually shut down.
Like my cyber-rock Kenn I wonder if the small town that gave West Hollywood the gift of Steven celebrated the life of a man taken by AIDS or by Lymphoma.
Since no mother should bury a child (did I mention that Steven was the second of her sons to succumb to AIDS?) I will reserve judgment.
Some of the guys are very angry that Steven wasn't buried here. I don't share that rage, I wonder if it's just exhaustion.
My mother in law is due to begin chemotherapy today. The doctors have given her a 50% chance of getting to remission.
My children are frightened and there's nothing I can do to allay their fears. The fear that their Grandmother will die is a real and reasonable one. They are also saddened by Steven's death but they take it in stride.
Adam and Eve want to know that Mom and Dad are healthy.
They want to know what would happen to them if we died.
They worry that their Uncle smokes.
They see their strong father sad and suffering this is new and unusual.
I can only hold them, show them our fitness and tell them that G-d needed Steven to keep the other angels happy. I tell them that I'm hopeful for Grammie but no one is really sure, Daddy just needs us to all be very good for him.
It's a difficult moment to be a Jew, we don't discuss the afterlife, we don't dwell on it, we simply march on.
I'm teaching Adam and Eve to march forward, shoulders squared even when your eyes are watery.
I'm very afraid.
Steven's entire graduating High School class showed up. It was 90 minutes long and the town virtually shut down.
Like my cyber-rock Kenn I wonder if the small town that gave West Hollywood the gift of Steven celebrated the life of a man taken by AIDS or by Lymphoma.
Since no mother should bury a child (did I mention that Steven was the second of her sons to succumb to AIDS?) I will reserve judgment.
Some of the guys are very angry that Steven wasn't buried here. I don't share that rage, I wonder if it's just exhaustion.
My mother in law is due to begin chemotherapy today. The doctors have given her a 50% chance of getting to remission.
My children are frightened and there's nothing I can do to allay their fears. The fear that their Grandmother will die is a real and reasonable one. They are also saddened by Steven's death but they take it in stride.
Adam and Eve want to know that Mom and Dad are healthy.
They want to know what would happen to them if we died.
They worry that their Uncle smokes.
They see their strong father sad and suffering this is new and unusual.
I can only hold them, show them our fitness and tell them that G-d needed Steven to keep the other angels happy. I tell them that I'm hopeful for Grammie but no one is really sure, Daddy just needs us to all be very good for him.
It's a difficult moment to be a Jew, we don't discuss the afterlife, we don't dwell on it, we simply march on.
I'm teaching Adam and Eve to march forward, shoulders squared even when your eyes are watery.
I'm very afraid.
Thursday, February 8, 2007
Skiing Alone Flying through powder
We ran away.
We took the kids and we are literally on top of a mountain.
Hubby's mother had a 5.5 hour emergency surgery yesterday. It's lymphoma and it's bad. I told him she could come live with us, that I would take care of her if it's what he wanted. I also promised to not repeat the conversation.
He is my husband, any decision he makes will be fine with me. I love him and I'll do anything for him, including caring for his mother who gave me such a magnificent man.
Adam and Eve have learned to snowboard. Hubby has learned too.
Something wonderful happens to me on the mountain and I'm free.
I find the steepest meanest trails I can, covered in powder to my knees and I ski so hard I fight for breath and every so often I'm so scared I cry.
But I ski like I run. It's intense and it's solo and the physical challenge shuts my brain off for hours at a time.
The teenage hotshots whip past me coming off the ski lifts but I glide past them, weaving through the trees, jumping small cliffs and my 37 year old knees are giant shock absorbers. My thighs are tight and they ache but there are so few things in this world that I know I do better than most.
Skiing is something I do better than most
And on the Mountain
No One
Can
Catch
Me
NO Matter
How Hard
They
Try.
I needed this. Hubby needed a break, Adam and Eve needed this.
Tomorrow I'll ski and run since I'm now adjusted to the altitude.
This is bliss.
I may not be a size 2 but my body works perfectly and I'm immensely grateful for that.
I believe.
We took the kids and we are literally on top of a mountain.
Hubby's mother had a 5.5 hour emergency surgery yesterday. It's lymphoma and it's bad. I told him she could come live with us, that I would take care of her if it's what he wanted. I also promised to not repeat the conversation.
He is my husband, any decision he makes will be fine with me. I love him and I'll do anything for him, including caring for his mother who gave me such a magnificent man.
Adam and Eve have learned to snowboard. Hubby has learned too.
Something wonderful happens to me on the mountain and I'm free.
I find the steepest meanest trails I can, covered in powder to my knees and I ski so hard I fight for breath and every so often I'm so scared I cry.
But I ski like I run. It's intense and it's solo and the physical challenge shuts my brain off for hours at a time.
The teenage hotshots whip past me coming off the ski lifts but I glide past them, weaving through the trees, jumping small cliffs and my 37 year old knees are giant shock absorbers. My thighs are tight and they ache but there are so few things in this world that I know I do better than most.
Skiing is something I do better than most
And on the Mountain
No One
Can
Catch
Me
NO Matter
How Hard
They
Try.
I needed this. Hubby needed a break, Adam and Eve needed this.
Tomorrow I'll ski and run since I'm now adjusted to the altitude.
This is bliss.
I may not be a size 2 but my body works perfectly and I'm immensely grateful for that.
I believe.
Sunday, February 4, 2007
The Days of Anger
I think I'll do a post a day about something I'm angry at.
Just for a while...
If you're uninterested just click away. I won't be angry at you.
I'm angry at people who lie.
Steven's Sisters cried and screamed over his dead body for three hours.
The stood over a contorted yellow and bloating corpse to flog themselves yelling at the heavens, "We should have come and visited when he was alive." And other things but basically a self-flagellating yell that echoed through the halls of our fair hospital.
These were appropriate sentiments.
I believe Southern Baptists declare their sins aloud in Church and somehow are absolved of them? I'm unsure.
What infuriated me even more though was the, "honey, you did the best you could" and "he knew you loved him" that reverberated through the tiny room.
Bullshit.
They didn't do their best and he felt totally unloved and alone. Their best was jumping on a plane and coming to visit and they didn't do their best until he was long gone.
And you know what else? They didn't do their best until someone else footed the bill.
Greed is bad.
Catering to your basest fear is bad.
But consoling someone and telling them their behavior was acceptable when it was not. I'm still deciding who is the bigger asshole.
I detest false praise for children as much as false absolution for adults.
It's too fucking late to be a good family.
And Steven would kill me for feeling this, much less writing it because he's kinder and more forgiving than I am.
So what angers me is telling people it's okay to be bad as long as you feel guilty after the fact.
I grew up in a very observant home. I am first generation after the Holocaust. I'm the first American on one side, perhaps that sheds a little light on my rigidity and adherence to laws of conduct. My upbringing tells me, my belief system tells me that what you feel, what you believe and what you think are of no importance when compared to how you behave.
This behavior has left me very angry.
I spend every bit of energy I have today letting Adam and Eve feel loved and letting them know that my seething rage is at AIDS and a family's failure to actively love.
I know my children are small but I don't want them afraid of death. What I want is for them to watch our family value our lives.
This is a good lesson.
My children know AIDS.
Just for a while...
If you're uninterested just click away. I won't be angry at you.
I'm angry at people who lie.
Steven's Sisters cried and screamed over his dead body for three hours.
The stood over a contorted yellow and bloating corpse to flog themselves yelling at the heavens, "We should have come and visited when he was alive." And other things but basically a self-flagellating yell that echoed through the halls of our fair hospital.
These were appropriate sentiments.
I believe Southern Baptists declare their sins aloud in Church and somehow are absolved of them? I'm unsure.
What infuriated me even more though was the, "honey, you did the best you could" and "he knew you loved him" that reverberated through the tiny room.
Bullshit.
They didn't do their best and he felt totally unloved and alone. Their best was jumping on a plane and coming to visit and they didn't do their best until he was long gone.
And you know what else? They didn't do their best until someone else footed the bill.
Greed is bad.
Catering to your basest fear is bad.
But consoling someone and telling them their behavior was acceptable when it was not. I'm still deciding who is the bigger asshole.
I detest false praise for children as much as false absolution for adults.
It's too fucking late to be a good family.
And Steven would kill me for feeling this, much less writing it because he's kinder and more forgiving than I am.
So what angers me is telling people it's okay to be bad as long as you feel guilty after the fact.
I grew up in a very observant home. I am first generation after the Holocaust. I'm the first American on one side, perhaps that sheds a little light on my rigidity and adherence to laws of conduct. My upbringing tells me, my belief system tells me that what you feel, what you believe and what you think are of no importance when compared to how you behave.
This behavior has left me very angry.
I spend every bit of energy I have today letting Adam and Eve feel loved and letting them know that my seething rage is at AIDS and a family's failure to actively love.
I know my children are small but I don't want them afraid of death. What I want is for them to watch our family value our lives.
This is a good lesson.
My children know AIDS.
Saturday, February 3, 2007
Nothing
Because a title would only take away from it
6:50 Steven passed
6:55 His partner called and told me
I finished cooking for my family, kissed them and left
8:00 at the hospital
peeling sisters off a broken looking yellow version of v
Cried because he died before he wrinkled
Called the mortuary
Called my mother
Called my husband
Rocked his sisters and begged them to stop touching him, his skin is peeling off
Thanked his mother for sharing him with us
Laughed uproariously with the family and friends
Nudged the dancing queens and begged them to act straight just for a few minutes, they raised their waxed eyebrows and said they were
Made hotel reservations
Said amen to a Buddhist prayer recited in Korean
Said Amen to a Catholic prayer recited in Latin
Was doused in holy water from New Mexico
Silently said the Shema and thanked G-d for taking him
Begged the nurses to help the mother out because her knees were buckling
Drove mom, sister, niece and brother in law past Mickeys, Rage and various cruisers to deposit them at a hotel.
They wondered aloud where everyone was walking to.
I can't wait for them to enjoy the buffet breakfast with the tranny hookers...
My friend of 20 years, my love, my family of choice, he's finally gone.
I can only share with my husband the immense relief it is. I didn't want him to die but he just wasn't living.
His mother chants, "Not my Steven. Not my Steven. Not my Steven. Not my Steven. Not my Steven."
His sisters realize that she did, in fact, love him best.
This is a long day with the laughter dousing the tears. I can't sleep or eat but I can't stay awake or speak coherently.
Eve smiled a little when she heard he died. I think she's tired of sharing me.
I'm tired too Eve but I'm teaching you to be unafraid in the face of death. I'm showing you that no one is invincible and we are all uniquely bound to one another. Eve, my precious, I'm showing you how to be a woman. How to walk tall and proud, how to use your intellect and your resources to thank those around you.
And I will take you proudly to the memorial tomorrow and show you what it is to be a lady because Steven and his partner loved you and you loved them. You will be a gift to Steven's mother who needs to see that a typical family loved and was loved by her son. Not because we're better than the lipstick lesbians who did hair and nails with him, not because our family has more value than the two Daddies who will show up but because Steven's mother deserves to have one little something that's inside her comfort zone.
Because once you join the tribe of mothers you become everyone's mother and when a mother loses her son you honor her. You do what you can to make a woman comfortable who has seen her child in and out of the world. You cater to racism and bigotry because next year or next week when the time is right you will have been dignified and when you say how hurtful it was they might be ready to hear it. Or maybe not, but it's okay because it's fear not malice. And it's okay because their grief is so palpable they really need an enemy and you know it's not real.
It's the wrong order of things. Mothers shouldn't bury children.
It's the same hospital where Adam and Eve were born.
It's the same hospital where I sat with a febrile infant Adam for 5 days praying that I'd bring my baby home when the doctors weren't quite sure.
It's the same hospital where my Uncle Died and my Aunt Collapsed.
His partner swears up and down that he's negative... but then again Steven swore the same thing.
Without Steven I feel old. Like I'm supposed to be the adult, because he took care of me.
When I stop typing I'll know he's really gone.
I'll have to fight the urge to delete this whole fucking blog.
6:50 Steven passed
6:55 His partner called and told me
I finished cooking for my family, kissed them and left
8:00 at the hospital
peeling sisters off a broken looking yellow version of v
Cried because he died before he wrinkled
Called the mortuary
Called my mother
Called my husband
Rocked his sisters and begged them to stop touching him, his skin is peeling off
Thanked his mother for sharing him with us
Laughed uproariously with the family and friends
Nudged the dancing queens and begged them to act straight just for a few minutes, they raised their waxed eyebrows and said they were
Made hotel reservations
Said amen to a Buddhist prayer recited in Korean
Said Amen to a Catholic prayer recited in Latin
Was doused in holy water from New Mexico
Silently said the Shema and thanked G-d for taking him
Begged the nurses to help the mother out because her knees were buckling
Drove mom, sister, niece and brother in law past Mickeys, Rage and various cruisers to deposit them at a hotel.
They wondered aloud where everyone was walking to.
I can't wait for them to enjoy the buffet breakfast with the tranny hookers...
My friend of 20 years, my love, my family of choice, he's finally gone.
I can only share with my husband the immense relief it is. I didn't want him to die but he just wasn't living.
His mother chants, "Not my Steven. Not my Steven. Not my Steven. Not my Steven. Not my Steven."
His sisters realize that she did, in fact, love him best.
This is a long day with the laughter dousing the tears. I can't sleep or eat but I can't stay awake or speak coherently.
Eve smiled a little when she heard he died. I think she's tired of sharing me.
I'm tired too Eve but I'm teaching you to be unafraid in the face of death. I'm showing you that no one is invincible and we are all uniquely bound to one another. Eve, my precious, I'm showing you how to be a woman. How to walk tall and proud, how to use your intellect and your resources to thank those around you.
And I will take you proudly to the memorial tomorrow and show you what it is to be a lady because Steven and his partner loved you and you loved them. You will be a gift to Steven's mother who needs to see that a typical family loved and was loved by her son. Not because we're better than the lipstick lesbians who did hair and nails with him, not because our family has more value than the two Daddies who will show up but because Steven's mother deserves to have one little something that's inside her comfort zone.
Because once you join the tribe of mothers you become everyone's mother and when a mother loses her son you honor her. You do what you can to make a woman comfortable who has seen her child in and out of the world. You cater to racism and bigotry because next year or next week when the time is right you will have been dignified and when you say how hurtful it was they might be ready to hear it. Or maybe not, but it's okay because it's fear not malice. And it's okay because their grief is so palpable they really need an enemy and you know it's not real.
It's the wrong order of things. Mothers shouldn't bury children.
It's the same hospital where Adam and Eve were born.
It's the same hospital where I sat with a febrile infant Adam for 5 days praying that I'd bring my baby home when the doctors weren't quite sure.
It's the same hospital where my Uncle Died and my Aunt Collapsed.
His partner swears up and down that he's negative... but then again Steven swore the same thing.
Without Steven I feel old. Like I'm supposed to be the adult, because he took care of me.
When I stop typing I'll know he's really gone.
I'll have to fight the urge to delete this whole fucking blog.
Never been on an Airplane
I picked up 5 people from the airport today.
It was their first plane trip, they want to drive back to the swampland they came from.
The tall sister is 5 feet tall
The thin sister is 200 pounds
The brother in law never spoke
The nephew only cares about corvettes
The niece is 7 and wants to recite the 23rd psalm to her favorite uncle
Apparently no one noticed the gay Puerto Rican beside me who has shared a bed with their favorite uncle for so many years.
They gasped at the sight of a straight interracial couple... if they ever get around to opening their eyes this will be quite a tailspin.
There's been no food or water for a few days.
His breath is slowing and his mother openly weeps.
I'm enormously relieved.
It was their first plane trip, they want to drive back to the swampland they came from.
The tall sister is 5 feet tall
The thin sister is 200 pounds
The brother in law never spoke
The nephew only cares about corvettes
The niece is 7 and wants to recite the 23rd psalm to her favorite uncle
Apparently no one noticed the gay Puerto Rican beside me who has shared a bed with their favorite uncle for so many years.
They gasped at the sight of a straight interracial couple... if they ever get around to opening their eyes this will be quite a tailspin.
There's been no food or water for a few days.
His breath is slowing and his mother openly weeps.
I'm enormously relieved.
Friday, February 2, 2007
Today's Phone Conversations
#1 My morning call to Steven's mother, same as every morning.
*Click* and I throw up
#2
#3
#4 The phone rings
And she hangs up.
This is more than Steven's family is prepared for.
Bedsores have turned into festering chasms and all he does is moan in pain.
His friends fight the impulse to smother him with a pillow because anyone who loves him would want him to die.
I go to sleep tonight praying for his pain to end.
I'm thankful that his sisters won't flirt with death.
I need to call my brother and tell him I love him.
***** UPDATE ******
Phone rings
STEVEN'S 14 YEAR PARTNER
Click
ME: Good morning, how's the patient.
JACKIE: Dying Jessica, my baby's dying
ME: I'm so sorry
JACKIE: He only wakes up to moan and we got the second opinion and there's no way to treat the cancer because the chemo will kill him and there's no way to live through the cancer and...
ME: Do you know you're a wonderful mother and Steven loves you?
JACKIE: Honey I've gotta be strong
ME: You are strong and I love you
JACKIE: I love you baby. Will you call his sisters for me?
ME: Sure. I'll see you later I've really gotta go.
*Click* and I throw up
#2
ME: Hi honey, it's Jessica, Steven's friend in Los Angeles
STEVEN'S SISTER: Hi, how are you?
ME: Sugar, it's time
SS: I know, Momma told me but we're real afraid to fly
ME: I know but it's time to buck up and pack your stuff
SS: That's what Momma said. But we've never flown before
ME: The boys will get you a ticket, you just pack
SS: Pack what?
ME: Clothing and shoes, we'll make sure you have everything else
SS: Shampoo...
ME: Just pack your clothes and get on a plane. Have you spoken to your mother? I mean really spoken lately?
SS: What do you mean?
ME: Before you come see Steven you really need to know a few things and your daughter probably shouldn't come to the hospital.
SS: Okay, I'll call Momma.
#3
ME: Hi Jackie
JACKIE: Hi Sugar
ME: You've got the next 24 hours to tell your daughters that Steven has AIDS.
JACKIE: I think you're overstepping your bounds a little...
ME: I love Steven and I know you love your daughters but if one of them walks into this room and kisses him on an open sore she'll have HIV, do you understand how serious this is????
JACKIE: We just do things a little different....
ME: I have their phone numbers and I'm picking them up from the airport and even if you hate me forever I will NOT let them walk into that hospital room without knowing that they have to take precautions when they touch their brother.
JACKIE: I wish you wouldn't
ME: I know you don't believe me but this is out of love. I don't want your son's disease killing your daughters.
JACKIE: I'll do it
ME: I know you will
#4 The phone rings
SISTER NUMBER TWO: How long have you known?
ME:Since '92
SIS 2: Why didn't you tell me
ME: He didn't want you to know
SIS 2: That's not fair
ME: I know and I'm sorry. I did it because I loved him and wanted to respect his wishes
SIS 2: What about our wishes?
ME: My relationship is with Steven.
silence
ME: Do you still want me to pick you up from the airport tomorrow?
SIS 2:Yes
ME: It's okay if you need to be mad at me. I'm very angry too but not with you
SIS 2: I'm not angry
ME: But it's okay if you are. This really sucks
SIS 2: I've never been on a plane before
ME: I know. There's a lot of us here who love Steven and we'll help you if you let us.
SIS 2: I still think you should have told us.
ME: I know.
And she hangs up.
This is more than Steven's family is prepared for.
Bedsores have turned into festering chasms and all he does is moan in pain.
His friends fight the impulse to smother him with a pillow because anyone who loves him would want him to die.
I go to sleep tonight praying for his pain to end.
I'm thankful that his sisters won't flirt with death.
I need to call my brother and tell him I love him.
***** UPDATE ******
Phone rings
STEVEN'S 14 YEAR PARTNER
PARTNER: What did you do?
ME: What do you mean?
PARTNER: Why did you make her say it?
ME: Because someone had to
PARTNER: That was a dying man's last wish
ME: Tough shit and I don't care if you're mad.
PARTNER: It's not fair....
ME: Did you have sex with him?
PARTNER: This isn't sex
ME: You didn't have sex with him because you didn't want to die andright now kissing him is a death wish
PARTNER: They're not gonna kiss him
ME: Now, they're not gonna kiss him now
PARTNER: Everyone's really mad at you
ME: Okay, at least they'll be alive
PARTNER: Are you gonna pick me up on the way to the airport tomorrow?
ME: Of course
PARTNER: I love you but I'm really angry
ME: Okay
Click
Thursday, February 1, 2007
Sick Little Boys
Hubby and Eve have mended and returned to work and school.
That leaves queasy me home with snotty febrile Adam.
The last two hours was spent with him frogged up into a snuggle on my chest. He's 5 now and doesn't fit the way he used to but I sat still and listened to his breath, wishing I could take the body aches away and silently thanking G-d for giving me this amazing family.
I can't help but think of Steven's Mother right now and the ache in her heart. My love of Steven has transferred to loving his mother because so much of him is gone already.
On a lighter note, we were watching Grease: You're The One That I Want last night and they dusted off Olivia Newton John, when she came on camera Eve declared, "Oh Mommy, she's beautiful. She looks just like me but with blonde hair!"
That leaves queasy me home with snotty febrile Adam.
The last two hours was spent with him frogged up into a snuggle on my chest. He's 5 now and doesn't fit the way he used to but I sat still and listened to his breath, wishing I could take the body aches away and silently thanking G-d for giving me this amazing family.
I can't help but think of Steven's Mother right now and the ache in her heart. My love of Steven has transferred to loving his mother because so much of him is gone already.
On a lighter note, we were watching Grease: You're The One That I Want last night and they dusted off Olivia Newton John, when she came on camera Eve declared, "Oh Mommy, she's beautiful. She looks just like me but with blonde hair!"
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.
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
Vigil
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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