miércoles, 27 de abril de 2011

One of a Million

Day by day, we have more hope, as she comes to grips with how it will be.  She is able to sit up now and survey the rest of the ward, stand even sometimes.  Her big brown, longing eyes are more alert, and her sharply-cut face less gaunt, although she’ll never get rid of the discolored scars from wounds on her neck and chest.  Her feet are no longer swollen like sponges but the deep stretch marks are still evident.    Hundreds of pills have wreaked havoc on her bulging stomach, which looks like the ones you see on the African children on the commercials trying to sell charity to the rich.  But her tiny, frail frame is less hunched, and she gets less fevers.  She is no longer on the verge of dying, but the problem at this point is that she can only get so much better.  
About two weeks ago they took x-rays of her lungs again and when I asked her how they had come out, she stopped suddenly and choked, and began to cry, and haltingly told me through her green-rimmed Darth Vader oxygen mask that they were going to have her on oxygen permanently.   I dropped too.   I hadn’t wanted to think that could even be a possibility.  The doctor showed us the x-rays, but it certainly didn’t take a doctor to understand them.  About half of each of her small sunken lungs was consumed by what looked like thick opaque spider webs, which meant that they had hardened through fibrosis. Those portions of the lung were dead, could no longer take in oxygen, and the damage was permanent.  
Suddenly all I could think about was my Grandma, Sheshe, who died from lung cancer three years ago, and about the days I would go to her house after grade school with my mom and I would eat junk food and watch cartoons over the incessant and oppressive whirring of the oxygen machine.   I imagined my mom and Sheshe being together, sitting, trying to make conversation, but not too much, because talking can be agonizing for people on oxygen.  These apparatuses gave Sheshe a subjugated, immobile life for about 10 years, but one that she was willing to live to be with those she loved.    
I jolted back to the present and put my arm around Lisseth.  I felt her quivering lightly through the tiny sobs as the tears streamed down her face and I swallowed back by own.  I started reciting my litany of weary encouragements that it will be okay, and you’re going to be fine, just trust in God, you’re going to get better, and this time I added, “They’re probably wrong anyways that permanent oxygen means forever.”    I mean they had messed up everything else. 
But this isn’t a fairy tale- permanent does mean forever, even here.   Now we have to decide whether to buy the oxygen machine or just rent it.  I was set to ask Dr. Joe to buy it for her, but it was the Hospital social worker who mentioned the cold, heartless point of whether or not she’s going to live long enough to make buying the machine worth it.  We’ve got about a week to decide, which is when she’ll be let out after finishing the 50 days of the first phase of the tuberculosis treatment. 
Sheshe had smoked from the time she was 18 and got lung cancer when she was in her mid 60’s.  By the time Lisseth was 18, she was in charge of three children (one little sister and two of her own kids) sold candy on the busses around the Terminal de Oriente on the edge of San Salvador to support them, and had already unknowingly been laden with a rare form of tuberculosis for a year.  All she knew was that she was always tired, in pain, had trouble breathing, and that huge pus-seeping sores would suddenly and frequently appear on her chest and throat.  But she had never had a proper diagnosis, let alone any treatment.  There’s no time to be sick for a single mother surviving day to day as a street  vendor.   
Now she’s 19, and if it hadn’t been for Dr. Joe from Kansas City who saw her here at Maria Madre during Health Week, and paid for her to get initial treatment and all the appropriate tests in October of last year (and continues to cover her living expenses through the Social Assistance program at Maria Madre), she probably would’ve died by November.  If it hadn’t been for Dr. Coello here in San Salvador who made sure she got admitted into the Hospital Zacamil in December for intensive care, she would’ve died by January.  If she hadn’t gotten transferred to Hospital Rosales at the end of January because they weren’t applying the treatment correctly at Zacamil, she would’ve died by February.  And then at the beginning of March, they let her out of Rosales too early and she almost died in the small, cell-like room that she rents for sixty dollars a month.   On March 16th, she barely managed to get back to Rosales in time- doubled over, almost paralyzed from the pain, scarcely able to walk, let alone breathe, almost surrendering to the curable bacteria that was eating away not only at her lungs at this point, but at her stomach, her lymph nodes, her liver, and her heart.  
So now her life is Hospital Rosales, and she hates it.  The heat is unbearable, and she hasn’t seen her kids in well over a month.  Once she began to grip the fact that she would need the oxygen for the rest of the life, she started trying to convince me, either disingenuously or in delusional desperation, that the doctors would let her go back home if we could just get her the oxygen machine, even though the doctors had told us both numerous times that wasn’t the case.  Sometimes the doctors seem exasperated with her, like she is just a child.  I mean she is, and she just wants to get out of her prison.  But they just want to make sure she actually survives once she gets out.    
The bed next to her, about four feet away, is the one where the nurses put other patients when they’re about to die, it seems.   She’s had about four or five, she can’t remember exactly, die next to her in the five weeks that she’s been there.   Right now there is a 30 year old lady next to her dying from a “virus in her brain”.   Her glazed eyes are permanently fixed on something beyond the ceiling, and Lisseth says she never closes them.  The lady’s mom was saying that they were going to de-tube her, that it’s not real life if she’s just living off a tube.  And she asked me if I was a family member of Lisseth.  I stuttered noises for a second and then said I’m her brother, her adopted brother, and we all kind of smiled and fidgeted knowingly.   
Lisseth no longer knows any of her biological family except for her two kids and her 9 year old sister Priscilla.   She is from el Paisnal, north of San Salvador, and when she was 12 her mother brought her and Priscilla (then three) into San Martin, just east of San Salvador.  She told them she was going to go buy tortillas and she never came back.  Lisseth began caring for Priscilla on her own, and eventually stopped waiting for her mom to reappear.  They made their way into San Salvador to the Terminal de Oriente, which is where Lisseth met Flor, a dwarfish, fat older woman who dyes her hair blond, puts on too much makeup and too revealing of clothes.  She helps run a mezon in La Peralta, a marginal neighborhood close to the Terminal, and worked it out to let Lisseth a room there, which is where she has lived ever since.  At 14 she got pregnant with Marjory, the cutest, sweetest little girl you can imagine, and then at 17 she got pregnant with Eduardo, who has the runniest nose and largest penchant for hitting others that you can imagine.  The fathers aren’t in the picture.   

She first told me this story, after considerable coaxing on my part, one day as we were seated in the Parque Roble waiting for the appointment with Dr. Coello.  Priscilla and Marjory had come with us and were running around the park having the time of their lives.  They had never seen a place like this.  Their eyes were glowing, their faces in wonder- there was so much space, so much grass, so many swing sets.  They ran and got in the metal box swings, and I went over and pushed them for a bit, as Lisseth sat gingerly on the root of a nearby tree, with her arm hanging awkwardly at her side not allowing it to touch her torso, which was very tender at the time.  When the girls got bored of the swings they went running all over the park, barefoot, and laughing, and I sat back down with Lisseth. 
She continued, “I’ve always taken care of Priscilla, always.  And now Marjory and Eduardo too.  I love them so much and I just want them to have good lives.”  The girls got tired and came to where we were.   Marjory started fingering the grass, savoring its soft feel.  She laid down in it and began to make angels, like she were in the snow.  She got up smiling with twigs and dead leaves in her hair.  Lisseth forced a smile too: “I need to be alive for them.”
And somehow in that moment, I felt the need to reiterate the bitter foundational lesson that her own mother had tainted her life with, and said to her: “That’s right, a mom can never leave her kids.” 
“Of course not,” she replied… like I had thought it would have been on her accord. 
I show up to Rosales every other day, with the little green card that is restricted for immediate family members, and the vigilante lets me through.  I walk down the open air aisles passing by the decrepit and dying elderly, the youth with stricken faces and bundles of sheets and tubes wrapped around their midsection, alternately skinny and bloated women - some with faces of determination others of resignation, men with bandages over their eyes and nose, the stub of an arm, a malformed leg.  But it’s always the smells that get us at hospitals, and in the aisles of Rosales you only catch faint wafts, but once you enter a ward it is a suffocating cloud of bad cafeteria food, rubbing alcohol, and decay.  It lacks doctors, but overflows with people-students, visitors, and of course more patients than could possibly be attended to.   In the new emergency room financed by Japan, there are anywhere between 70 and 100 people lying on the floor at any given time, moaning, waiting to be attended if they’re lucky, and if they’re not, they get sent back home because their injury or illness isn’t serious enough to be seen here.   And for all the public health and national budget issues at hand, Lisseth’s biggest complaint is that they don’t put salt in the food.  
I feel noble coming to visit, but in the back of my mind I don’t want to- there’s so much suffering, it’s time out of my busy schedule, it’s so hard to give the motivational spiels- to tell someone to keep fighting even though the best they will get is to go home and to be chained to an oxygen tank, although now at least she can take off the mask for a couple minutes at a time.   But it’s Flor who comes every day.  It’s Flor who takes care of Priscilla, Marjory and Eduardo back at the mezon.   She is the only real semblance of family that Lisseth has.   She’s the one that Eduardo calls Papi.  But it’s also Flor that I don’t trust.  From the first interactions that I had with Lisseth, often times Flor would be in the background, and I was never sure about her.  She runs a mezon in La Peralta for God’s sake, but she has always helped Lisseth. 
La Peralta is out of my territory, out of the parish’s territory, but right across the Bulevar Venezuela.  It’s still held by the same 18 gang, but a different click- homies who I don’t know, and who don’t know me.  When people in La Chacra would find out that I facilitated Dr. Joe’s helping Lisseth, and that she lives there, they would tell me to never go, and I would casually omit that I already had a number of times.  I don’t go anymore though.   The first time I went to her mezon it was after church and I somewhat jokingly asked my buddy Ronald if he wanted to come with me.   He somewhat jokingly did the sign of the cross on me, and said may God bless you.  He’s not really religious, but he comes to mass to people-watch.  
So I went by myself, and Lisseth met me out on the street and led me towards the building.  As I walked in, I realized a mezon was like the sick, twisted, extreme-Salvadoran-poverty version of an apartment complex, or perhaps a dormitory floor at college.  It was a square building with tiny, poorly-lit, one-room cubes around the outside where the people live, and a communal bathroom area and store in the middle.  There was bubbly, used- liquid substances flowing down the narrow corridor that linked the rooms to the common area, and as we walked in, everyone stuck there heads out of their doors to see who had shown up.  Suddenly, I almost ran into someone coming out of the shower area- a tall, lanky subject with a towel wrapped around his middle, and his light skin punctuated with flowing 18 tattoos all over his torso, neck and face- the kind of tattoo job that indicates an old school gangster, someone who got tatted before tats in public meant automatic prison.  When I got over that initial shock I realized he was staring me down as he sauntered by, perhaps slightly shocked at my presence too, I hoped.  
Eduardo, Marjory and Priscilla were all inside the room, excited to have a visitor.  I picked up Marjorie and she gave me a good kiss on the cheek, as she always does, none of the brushing the face stuff, good lip to scruff contact.   I looked around and the walls were all stained with 18 manchas, and it reeked of urine.  Lisseth eventually mentioned that she had the kids pee in a mica inside the room because she didn’t think it was safe for them to go to the communal bathroom, even with her.  Their world is that room, the CAPI day care center at Maria Madre, and the concrete in between.    I now understood why the Parque Roble had been such a paradise for them.

Flor is the one who runs the store inside the mezon, the one who collects people’s rent money.   And so what is her relationship to the pandilla here, to our tall tattooed buddy?  She has to have one.  And what is Lisseth’s relationship to them?  Because she has to have one too.  I had to initially be suspicious as to where the money from Dr. Joe to support Lisseth was really going.  But we have all the proof that the money is being administered properly.  Still, we have to leave a lot up to God, and trust in Him, and trust in Flor too. 
Yesterday, Flor and I showed up late to visit Lisseth and she was crying when we finally got  into the ward.  We were supposed to have gotten there right at noon to talk to her doctor, but she thought that we had just decided to abandon her.  We tried to tell her that we never will, and that the busses were running late.   But her whole life has only been abandonment and she has never been able to trust anyone.   I remembered that when this all first started, I didn’t want to allow myself to feel Lisseth’s pain- it would have been too heavy, so I just treated the help she needed as another job.  But now I am blessed to have an adopted sister who is beating tuberculosis, who makes me more human, and more punctual. 
I have told Lisseth’s story to a number of close friends, and one of them expressed what was in the back of my mind, but what used to always be in the very forefront of my mind: “Lisseth is just one of a million. Think of how many girls, women, Salvadorans, people all over the world, are suffering similarly infuriating and tragic situations because of lack of access to health care, because of poverty, because of structural injustice?  Just think about it, and Lisseth is just one of them.” 
There have been times in my life when I found it hard to care about just one.  It’s all the result of the structure anyways, I would say.  But the structure is only made up of individuals and every one of us makes a difference.   
l still don’t know how Lisseth and her kids will end up.  She is a testament to faith, hope and strength, but once she goes home to her kids and an oxygen machine, what will she do? It will only be the beginning of a new struggle, and one where she won’t be able to sell candy on busses anymore.  But no matter what, her being alive and being able to struggle for a better life for her kids is a triumph against a global structure that condemns the poor to death.    
I was at a session with Sister Peggy and a delegation recently, and she asked us to go around and present ourselves with our name, and a recent “rebirth” that we’ve had- a wonderful way for her to get to know us, and for us to get to know ourselves.  I thought about it hard, and I ended up saying something  safe and generic about living in El Salvador, but I knew in my heart, my rebirth was Lisseth’s rebirth.  That she had been so close to death, and that now she is going to live.