Sunday, January 20, 2013

Dying friend

What do you say to a friend who is as young as you are, who is going home from the hospital to hospice care?  Hospice.  Everyone knows what that word means.  It means you are dying.  But she is still alive.  Do you talk to them as if they will be here for sixty more years?  Do you accept the medical proclamation, "You are dying?"  Yes, because she is accepting it.  So I meet her where she is.  Doctors told her, "If we keep giving you chemo your lungs are probably going to collapse and we don't know why.  We can put you on a respirator, but you'll be unconscious."  "Thanks, but no thanks, I'm done, Doc!" she says.  Can't hold up this house of cards called my body in the wind storm of leukemia any more.  I'm signing off!  Love you Mom, love you Pops, sorry I can't hold you up or make you happy any more, but we've had a good run of it, haven't we?  Considering all of it!

Life is so tragic.  And Rachel's life seems to be a perfect example of the tragedy of life.  But that's where the beauty lies.  There's a reason why the Greeks loved tragic plays, because all deaths are tragic, whether they come one minute after birth or after 90 years of suffering.  The tragedy is being born at all.  Rachel, before she was Rachel, was conceived by a young, curvy, blonde nursing student who already had a daughter with severe cerebral palsy and a Paiute Native American, or maybe he preferred Indian, as it was in the fall of 1977, and AIM was pretty big in the 70's as I recall.  The blonde woman lived in Berkeley.  How did she meet this Paiute man?  Was he visiting friends and went out drinking one night and met this shy, lonely girl, lucky to have a night out away from her severely disabled daughter that she was raising on her own?  Did they dance in the bar that they met in?  Was it country music?  I imagine that a rural Native American might feel more comfortable listening to country, or was he at a disco bar, outside of his comfort zone, but more likely to find a young shiny girl to take back to a motel or his friend's apartment that he was staying with when he visited Berkeley.

When she found out that she was pregnant, did she tell him?  Had they struck up a casual relationship?  Or had they been secretly seeing each other for a while, secretly because her family was racist the way many families were, more so back then.  Her family of Baptist background, who had moved out to California in the 40s to find a better life than the farming life in Oklahoma.  Was his family also suspicious of him dating white girls?  And if they knew that she already had a daughter with a severe disability would they chide him for that too?  Not only a white girl but also one with bad genes, broken insides.  Would his mother have cared at all to bring into the fold of the Paiute family a little baby, who was carrying the genes of all their strong ancestors, all swirled up with the heavy blonde girl from Oklahoma's genes?  Or did he keep the pregnancy a secret from his family, not wanting to burden them with any more illegitimate children, especially when so many of his relatives were so far below poverty already and dealing with substance abuse problems and other kinds of health and emotional issues as well.  Did he get angry at the blonde woman?  Did he close off his heart and tell her to deal with *her* baby herself?

Did she ever consider keeping the baby?  She told the adoption agency that she couldn't raise another baby since she was already raising one with cerebral palsy and going to school at the same time, all as a single mother.  Did she resent the child with cerebral palsy, since she was already committed to raising her instead of the "normal" baby coming first?  Oh, wait, she also told the adoption agency that she feared her family might treat the baby differently since it was half Native American, half Indian she probably said, since Native American didn't come around as a term until well into the 80s.

The beginnings of this tragic death were so tragic themselves.  Of course the day that the adoptive parents got the call that a baby was available was not tragic, a real baby to call their own, and it was a girl!  They just had to drive eight hours up to Berkeley from San Diego, to claim her.  Of course, they had the right to refuse once they saw her, but how could they?  After the heart break of learning that they couldn't have children and the months and months and months of waiting for a baby, how could they refuse that tiny tiny baby, with the dark dark eyes and the dark dark hair, all scrunched up in the hospital blankets, so peaceful, not like the other babies, squirming and crying in their clear baby bins.  This little one, *their* little one, was so peaceful, she just blinked at them, and opened and closed her mouth with the tiny pink tongue pushing out, blinking like a little lamb, a little ewe, Rachel, Rachel who was Jacob's favorite wife, beautiful in form and countenance, mother of Joseph, matron of all the Hebrew nation, this was their Rachel.

And they didn't know what they were doing or how to do it and the nurses had to show them everything, even how to change her diapers, which she did cry about, and how to feed her properly, and how important it was to burp her afterward, and after three days, the hospital and the people from the adoption agency and the social workers, all gathered and said, "Go forth, Donna and Larry Dawson, this is your daughter!  Feed her and comfort her and clothe her and play with her and teach her all the good things in life, and she will grow up into your own daughter, your own in the world."

And they did.  And sometimes they did it fantastically and sometimes they failed miserably.  But she grew up like all children do.  And she went to the doctor sometimes like all children do.  And she made friends at school and got picked on at school like all children do.  And she became beautiful and strong and responsible and sometimes she was messy and whiny and lazy and forgetful and all of it was very human and some of it was memorable and much of it was forgotten.

And then she met me and I met her and we were teenagers and we had friends that were in our "group" and we did ridiculous things and we were jealous of each other and we supported each other and told each other secrets about secret things we had done with boys or when we were little and life hummed along the way it does in high school.  And, as you do with your friends in high school, we ate lunch together.  In a group, we sat on the grassy sculpted knolls that made up the central part of the school campus in sunny southern California.  We ate our peanut butter and jelly sandwiches and drank our boxes of Hi-C and ate our bags of rippled potato chips.  And one day she was eating prunes.  Who eats prunes in high school?  "You're like an old lady!" I told her.  "My grandma eats prunes so that she can poop!"  Still svelte and energetic and so young, but a tiredness like a shadow in the background, creeping up on her life, she responded, "Yeah, I think I am getting an ulcer or something.  My doctor says that prunes might help."  An ulcer?  At 16?  Geez!

And then high school has its grand finale with all the excitement coming to a swell, class trip to Disneyland, and getting ready to go to college and everyone so ambitious.  Rachel, with her art talent applies for and gets accepted to Rhode Island School of Design.  I and another close friend go to UC Davis.  I am clueless to the fact that RISD is a top school for artists, but I hear some little snippets of jealousy from friends to tell me enough that it is a much sought after school.

I stay in touch with Rachel over the summers and after my second year in college I hear that Rachel is leaving RISD to come home to San Diego.  Something about a really bad boyfriend and a trip to Italy where she got really sick, really really sick.

This was the beginning of Rachel's slide into complete infirmary.  A long, slow, tragic slide.  Somewhere around this time I went to visit her one summer and we were going to go out to a bar or a club.  I noticed that in her bathroom were all kinds of medical creams and bottles and pills.  What's going on?  And she was taking so long in the bathroom before we went out.  "Oh, I have something called Beshet's syndrome.  It makes me have ulcers wherever my capillaries are, so I have to put lubrication in my vagina and my anus before I go out, so that I can walk without pain." Followed by a kind of forced laugh.  Yes, she really did talk like that.  We always kind of tried to shock each other in our group, saying "inappropriate" things.  My other friend and I especially would try to gross out Rachel the most.  We would get Rachel to drive us places (she was the only one who drove) like the nude beach and then totally strip while Rachel stayed covered up.  Or take her to an exhibitionist art show.  Now *she* was the one shocking me.  I remember feeling uncomfortable, like how you would feel if you saw your grandma changing.  I think it was the fact that she was so young.  It flipped reality on its head for me.  It was okay to be naked and talk about vaginas and anuses as long as you were healthy and vibrant, but when you had to talk about them because your body was breaking down, it felt ill, it felt like uncertain ground.

Then next time I saw Rachel after that I had already graduated college or was close to graduating.  She was on full time disability.  It wasn't just the discomfort from her illness, but the depression that made it so hard for her to work.  If she wasn't depressed, she was having to go to the bathroom to deal with painful ulcers.  During this time Rachel didn't care about her health at all.  She desperately wanted to meet a guy, so she would go home with guys from clubs, only to have to push them away from her in pain when they would try to have sex with her.  She had to live with her parents, who were supportive, in the best way that they could be, but even they had no idea what they could do to help her out of this hole that was her Bechet's syndrome.  They got her a puppy, and that was helpful.  It gave her a reason to go out and get up.  He's ten years old now.  He sleeps a lot, still barks when people come up to the door for their piano lessons with Rachel's mom, and has a gray muzzle where it used to be black.  He has been a great support for Rachel's parents.  But he wasn't supposed to outlive their daughter.  He's not supposed to be there for her hospice care.  He's supposed to get old and die like all dogs do, but not outlive their daughter.  The dog that was bought to cheer up a sick 24-year-old!

After I graduated from college I traveled a bit and started looking for my own partner.  A little after I got married I went to visit Rachel again.  I brought my dog, who I had picked up at a wolf-rescue ranch I volunteered with while in college.  We walked our dogs to the dog park, which was about half a mile from her house.  She walked slowly.  She *talked* slowly.  She was very very depressed.  She had been depressed for so long that I started to believe that she had always been that way.  I couldn't remember the goofy high school friend who ditched class with me and made silly faces and was always game to do anything or go anywhere even if her somewhat overbearing Jewish mother would find out and disapprove.  Rachel picked up on the fact that I felt uncomfortable around her.  I had dealt with my own bouts of depression in the past and it was still so fresh and recent to me that I wanted to avoid it at all costs.  Rachel herself had, in a time of uncommon health the previous year, accompanied me on a car ride where I spilled out my own perception that I was losing touch with reality, bipolar, anxiety, split personality, whatever you want to call it.  She had just listened to me, when I told her that all I could listen to was Radio Disney because I was trying to get in touch with my inner child and that I felt so alone and scared for myself, she had tried to offer words of hope and consolation.  Now, walking with her to the dog park, she was so shaky, so reserved, she had nothing to say, and needed me to say anything, and I shrank away from her.  I had my fiance, and my as-yet-unknown pregnancy, and my life was full of new stuff, and she had nothing.  Her therapist was the mom of one of our high school lunch group, by coincidence only, a girl who was getting her master's degree at a women's college back east.  The tragedy was unfolding.

After that day I came home to my soon-to-be-husband and told him how uncomfortable I had felt with Rachel walking to the dog park.  He said what anyone would say to someone who was trying to get over depression, "Maybe you need to stay away for a while, for your own good."  That works sometimes, right?  You gain a fresh perspective?

I don't remember much about our relationship after that.  She did come to my wedding and my baby shower.  She gave me a bib with a whale on it that she had painted and on the back she painted the name Jonah.  "Jonah and the whale!  Isn't that cute?" she was so happy about it.  "Yes!  But his name is Noah!  I still love it though!"

Then came the call, was it a year ago, a year and a half, I think.  Donna, crying, "Rachel has leukemia!  She's in the hospital.  She would really love to hear from you."  And then more calls and more calls.  And Rachel telling me that she's fine and Donna telling me that she's really not fine and that she's dying.  So a trip to San Diego to visit her.  And then she's okay.  Then we're out for Christmas and I visit her again.  It's weeks before her bone marrow transplant, which is a miracle, because she's adopted AND mixed race, and a bone marrow transplant has to be exact race exact match exact everything, and it's also a miracle because the bone marrow transplant will "cure" her of her Beshets!  Lots of calls with Rachel.  Always just talking about news and entertainment.  Always me feeling like I'm hanging up too soon for her.  Me wanting to talk about death, but feeling a very strong intuition that that would be inappropriate.  Like I'm assuming.  Then the calls taper off.  On my part, mostly.  I think, "She's alive, she's alive!  Am I supposed to call her every week of her life?  She'll understand! I have three kids, I don't even call my grandma, who *is* slowly dying.  I should call my grandma..."

A couple of calls here and there.  "Oh, I'm back in the hospital.  It's just an infection.  They're not really sure.  It's not quite taking."

Then today, the hospice call.  "Rachel will call you later, if she feels up to it."  "Good," I say, "Let it be on her terms."

The last time I talked to Rachel, which was easily four months ago, she said she was tired of all the treatments.  She wanted to just go home, but she didn't want to make her mom sad, so she kept going along with all of it.  She was tired of being told what was "best for her."  Her mother was a dyed-in-the-wool East coast Jewish mother.  She *always* told Rachel what was best for her, it was a part of her culture.  Rachel's mom was my introduction to what a Jewish mother was all about.  Warm socks and wear your undies and every conversation with Rachel on the phone her mother would be in the background contributing from some unknown part of the house.  She didn't know any other way to be.  Nothing about Rachel's life was private to her.  Ever.  And now her mother can't go with her where she is going.  The pain of her mother poured over me like a deep milky river today, through the earpiece of the phone.  "How will she do it?" I ask myself.  How will she go on living?  I don't know!  Her only daughter, who has painted an image of that beloved Tuscan hillside that they went to visit as a family when Rachel got sick the first time on the wall of her kitchen, framed by a bouganvillea trellis.  Her only daughter, who has filled her house with watercolors and wire sculptures and puppets that she has crafted, all whimsical and delightful, each one received with such love and displayed with such pride.  Her only daughter, who through all this illness keeps talking about how she will go to school when this is all over, to be a textile designer, and really get her life back.  Only... only, now everything, all of it, from the first call that a baby was available, to the nights cursing the boys who keep her out late when they don't even know that she's sick, to the days when she layed in bed watching Oprah and America's Next Top Model, to the elation that she would be receiving a bone marrow transplant, all of it, coming to these next two weeks?  three weeks?  six weeks?  How do you do that?  What do you say?  What do you do?  Do you plan?  Do you weep?  Do you have any energy left *to* cry?  Do you read favorite childhood bedtime stories and eat favorite foods together, late at night while you laugh at David Letterman?  Do you drive out  to your favorite beach or that spot in the mountains, or just talk about those places because she's too tired, too sick, just needs a little nap.  What do you do?  What do I do?  What do I say?

On a rather serendipitous note, and I hate to use that word on this occasion, Erik's parents are moving to Tucson and Erik and I were already planning on going out to San Diego in two weeks to help move some stuff.  We couldn't afford for me to fly out or drive there alone right now.  And after two weeks from now we wouldn't even have a place to stay in San Diego when we go out there.  That's not entirely true, we have friends and family that would probably let us stay there if we asked, but his parents' house was always our go-to place when we went to San Diego.  And it was already planned that we would go out in two weeks for the final move.  Rachel will be going home tomorrow or the next day for home hospice care.  I will likely (hopefully) talk to her on the phone before that, this is all new, I just got the call from Donna tonight.  I feel like I'm being called upon to execute some higher, more elegant, important part of my brain on this occasion, but that I don't have it.  It's not there yet.  That part of the brain is supposed to come after one's parent passes away and one begins to learn, little at a time, about the mysteries surrounding life and death.  It's kind of like suddenly being called to the stage and not having anything prepared, but being told that you'll do fine, just improvise.  Each time one of these big mysterious moments arises in life, we swing our way through it and then come out the other side and look back to see what the damage was.  Or we mincingly make our way through it, apologizing with each step, trying hard not to step on anyone's toes, even though we are wearing giant clown shoes, and not learning much of anything at all.  There's no right way or wrong way, just a way, your way, whatever way you go.  I'll see you on the other side and let you know how it goes.

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