Wednesday, March 6, 2013

Come on people now, smile on your brother, everybody get together, try to love one another right now…


Here is what that song looks like, played out in real time in a real world. These are things I wrote in the last three months of a young woman’s life. Some of the names have been changed.
2/23/2007 - Take me down, to the infirmary
This may get a little confusing, but here we go. Over the past year at the clinic we've given some help to some people from the Sudan. One of them is a man with a severe thought disorder/psychosis as well as PTSD. We treat him for minor problems and another organization treats his psychiatric problems. (Once I went over there to talk with the psychiatrist about this man and when I was ready to leave, she asked how much Seroquel [a potent antipsychotic for schizophrenia and acute manic episodes] I needed to borrow. I told her I didn't need any and we looked at each other and busted out laughing. It's a crazy world, man.)
Another of the Sudanese who has been in the clinic is the man's sister (we'll call her Maryam here). She is a very sweet woman, 20-something years old, seems lost in America, but making it - working in food service somewhere. She had been to the clinic several times, and she and Caroline helped Leslie putting new charts together.

Yesterday Maryam's brother came to the clinic to stand there kind of shuffling and vibrating with his mental illness and the antipsychotics he's got on-board to tell us she was having severe back pain and couldn't leave the apartment. We had a full house at the clinic and I asked two of my students, Dana and Alicia to go to her apartment to see if they could determine what the problem was and what we should do. The anthropologist, Marisa, who works with us also went. (It's good to work with people like these.) They reported back that she really was in severe pain and there was no discernible etiology. There was a cousin visiting and he had a car. We sent them to the ER of the Medical Center nearby.
Today, the cousin came to see Leslie. He was sobbing (recall, he is a Sudanese man). Maryam has breast cancer metastatic to her spine (and probably elsewhere) and was admitted to the hospital. Leslie called to give me the news. I walked across the street to visit her. She looked so small, lying in the bed. "Thank you for visiting me," she said, in her sweet clear voice. Ahh, precious sister. It's a little strange interacting with her like this, she being pretty conservative Muslim and my inclination being to hold hands or whatever and knowing that's a bad idea, so I'm standing next to the bed - further away than I'd like ...
The social worker on the (oncology) unit has Leslie's cell number and it's in the chart, so that's a very good thing - justice-wise. Leslie and Caroline will visit her in the coming days, so here we go, Sudanese, Burmese (Karen), American, African, Asian, Anglo, Muslim, Christian, and my Leslie, a direct descendent of fierce old Isaiah.
So take me down,
to the infirmary.
Lay me down,
on cotton sheets.
Put a damp cloth,
on my forehead.
Lay me down,
let me sleep, let me sleep.

This is the saddest thing. Here we go.

3/1 - Update (Maryam is still at Baylor)
Leslie and Marisa visited Maryam today. She's doing well - In the context of terminal illness. The palliative care team is going far beyond what one might expect in these days of "the healthcare industry" (a vile term & concept). It appears that things may come together without much intervention on our part. Amazing. Reminds me of comments from a few days ago re mercy (my teacher and Maryam's doctor are well-known to one another). 

3/2- Making friends
A couple of days ago I was at another agency (through which Maryam's brother is treated) to give them an update on her status and perhaps light a fire for getting the brother's future planned as he will need living assistance. The person was saying, "What do we need to do?" And I'm saying, "Start planning." I gave her the address of a group house for people with mental illness, but I doubt she'll f/u. And she says, "Should I call _____  (someone who works at her center)?" And I say, "No need. I've never gotten a lick of work out of him." Oops.
Here is the history: they had a program to find and assist human trafficking victims and not only could I not (3 requests) get anyone from the agency to visit our waiting room to address a room full of people who have a very good idea where trafficked women are - I couldn't get brochures out of them! More often than not, when I would pass by the agency there would be staff sitting on the porch, smoking, talking. They had this program where people who had been tortured would paint flower pots with little flowers and designs. I'm telling you the truth here. But I guess now I'm the offensive one. But there's more.
Maryam told Leslie her brother had quit taking his medications. Leslie then called the psychiatrist, who, when they finally talked said, "I don't know why you people keep calling me. There's nothing I can do." Then she started telling Leslie why she (the psych) couldn't do anything and my wife says, "I don't have time for this," and brought the conversation to a close.
Why aren't we more politic? Often we are, but we've been confronted by this sloth and ineptitude and injustice for sooooo long. I mean, it's bleeding amazing. Once I was taking Van (pronounce like "vun"), a Vietnamese woman with advanced cancer to Parkland and the translator cancelled at the last minute and so with the woman in my truck, stopped by a multicultural assistance center and to see if their Vietnamese translator could help. There were about four staff people sitting around a table folding paper cranes for a peace festival or something like that. The director (her name was Sunny - ain't that cute) said, Sorry we can't help. We have to fold 5000 (or some number) of these by tomorrow for the peace festival. Bizzaroworld. I just walked out, dizzy with rage. What could I say?   
Today, Leslie took her Dad to visit Maryam. Now there's an unreconstructed Alabama man in the mix, if only briefly. This was a good thing, all the way around.

~One Love~

3/18 - She arose gracefully and walked toward me to step on the roach I had just flicked off my leg
That happened yesterday at an apartment where I was with a man and two women, one of them dying. I wish I could post a photo. Such beauty. Leslie is IT in this deal - I'm just helping out on the margin. Has to be a women because the woman who is dying is Muslim. Every time I turn around, and especially in matters of faith it seems to me that Leslie is there. Today in Sunday school Dan said (teaching from 1 John), "We are to love in deed and truth, not just word and speech ... we ought to lay down our lives for one another." And so, there is Leslie, caring in deed and truth, laying down her life for another - a true, living manifestation of agape.
Maryam is coming home today. She is having increased pain and difficulty swallowing (the latter is an ominous sign in the context of advanced cancer). Her brother was decompensating yesterday when Leslie was at the hospital. I don't know how that unfolded in the end. Leslie and I have been talking about our lives and the people we know - Caroline, Maryam, Jeff, Ron, Marisa, Alison ... I wonder, will the circle be unbroken? Will we hear the angels sing along? Muslims believe in angels. Sometimes in a dream ... 
A Pure Heart
I wish I was a sacrifice, and somehow still lived on

3/19 - An email from Leslie to Diane and Marisa
Hi friends,
Maryam was discharged today about 1:00. I saw her yesterday and had a long visit + began trying to make arrangements to have A____ (brother) admitted at Green Oaks as his condition continues to deteriorate. Maryam and N____ both want him hospitalized and put back on his meds but he has continued to refuse to go into the Baylor ER altho staff have assured the family that he would be admitted. I did not go to the apt today as they were waiting for the Hospice Nurse so I don’t know if N____ and her husband who arrived yesterday were able to take him to Green Oaks after I left yesterday- that was their plan when I left about 4:30.
So see how this sounds for a plan:
Tomorrow while Nora and I finish with patients and close the clinic, maybe the 2 of you could visit her and see that everything is in place with Hospice (I have the # for Vitas but don’t know what Social Worker and Nurse are assigned). I will plan to go on Friday and over the weekend. We need to visit whenever we can- she has begun to have increasing symptoms as the cancer spreads throughout her body. Two days ago, she began having severe pain in her right leg, a result of it spreading to the bones in that leg, and yesterday she began to have difficulty swallowing. So Min predicts that she has only a short time (when pushed for an estimate, she told me 4-6 weeks and maybe less). As the cancer progresses, Min says that she will decline rapidly so we need to schedule ourselves to go by any day we can. If we share and you take Thursday/Friday beginning next week, I’ll take the rest. It is a great comfort to both Maryam and N____ to have us so I think we must do whatever we can.
I’ll bring the phone numbers and address tomorrow and we’ll work out the details. Diane, Maryam loved the flowers that you brought and tells me often how much she loves us.
If either of you are praying people, now would be the time. My hear breaks for this family, scattered all over the world, who in the end don’t even have their Muslim brothers and sisters to support them. To my knowledge (and Min’s) there has only been one visitor from the mosque in Richardson and that was at least 2 weeks ago. Of course, we haven’t discussed the irony that this beautiful Muslim girl would die surrounded by a Jewish doctor, a Hindu Nurse, a fellow wounded soul from Burma and her Christian friends from Agape.
I’ll see you tomorrow. Thanks for your help.  
Leslie

As an aside, I brought a Burmese woman to her home a month or so ago from an appointment at Parkland re the breast mass she has - which turns out to be encysted worms (we're following up on that). When we got to her apartment, her two girls, ages 6 and 8 were standing outside on this misty day, wet, and there were three or four Anglo and Hispanic children on their bikes, a few feet from the girls, just sitting there looking at them. The life of refugees.

3/22 - Guns and Roses, Maryam
Katy Road Pink (found rose), Duchesse de Brabant (1857, Teddy Roosevelt's favorite boutonniere rose), and Belinda's Dream (1992) are blooming out front.
My ancestors fought in the Civil war (Confederacy, of course). My grandad was in WWI, I think not in heavy fighting. My Dad was wounded in Sicily in WWII. Uncle Lee fought in Korea and Vietnam - infantry and cavalry, wounded. I fought in Vietnam, wounded. That's enough - not my son!
Diane and Leslie were at Maryam's today, making food stamps happen (and it was not easy). Students, Megan & Stephani also went - took some Ensure. She's been in bed for several days. I think Maryam really likes Leslie being there. Leslie calls her "honey." 

3/27 - Song of the day, 30 days, it's raining
Missa Solemnis (Sanctus), Beethoven, 1819-1823.
Here is Leslie's summary report of the first 30 days with Maryam: On 2/21 a home visit was made by Baylor students to a young Sudanese woman who is a friend of our Burmese outreach worker. The students were unable to determine the cause of the patient’s pain and she was taken to the Baylor ER. The patient was admitted to the hospital from the ER and was diagnosed with breast cancer metastatic to brain, bones, liver, and lungs. She was discharged 3/14 and is at home with hospice care. I visit most days and am coordinating hospice and volunteer services, food stamp application and other social services, and volunteers. She has been okayed for emergency food stamps and we have gotten a working refrigerator in the apartment – both of which required significant effort. Her brother, who has schizophrenia and has been tortured, quit taking his antipsychotic medications the day his sister went to the hospital. He has been increasingly agitated, or conversely, showing signs of catatonia. We were able to get a home visit from ADAPT and he is back on his medications and is improving. Diane M, a professor of social work and one of our Friday volunteers visits the family on Fridays and two of the Baylor students visit every Wednesday and Thursday.

3/30 - Rage Against The Machine (but it's not really the machine)
So, Leslie has been working on getting food stamps for Maryam. A couple of days ago I wrote that Maryam was okayed for emergency food stamps. There was a hang-up with getting her cousin to be the person to use the card, but that seemed worked out as well. Today, Leslie went to the food stamp office for the final stamp of the stamps for the cousin and was told that Maryam had to come to the office to sign the papers (not allowed for Leslie to take the papers to her to sign) even though she has spent little time out of the bedroom for several weeks and a ride in the car is out of the question. First, the food stamp people said no way could this happen without her there. Then they said, since it was an emergency (what with her dying and all), they could send a caseworker to her apartment next week. Leslie was reduced to tears, which is pretty amazing for her. Leslie called the "human services" (more like inhuman services) regional office and they understood the urgency and by the time she was off the phone, someone had been assigned to go over there this day. And now, the application for the cousin to use the card is in the mail to Austin. Here is the real issue: no way could this have happened without Leslie - no way would they get help until after Maryam is dead, when, of course, they would no longer be eligible (Lenny Bruce, call home - we've got a good one for you). 
Rage, Rage, RAGE AGAINST THE MACHINE     
Honor Role: the apartment manager made things happen on her first day on the job. The man at the regional office who gets the picture. Diane, who calmly does her thing. Megan and Stephani, all things bright and beautiful. Adrian, the oncology social worker, who understands social work. Dr. F, who understands the human condition and knows what to do. Marisa, who is always ready (except she's laid up right now - get well soon, your tribe needs you).
But, like I said, it's not really the machine. It's people - people who don't see, who don't feel, who don't want to be bothered.

Tree of Life by (((Caterina Martinico, http://caterina-artfullmusings.blogspot.com/)))

4/3 - Who would have thought?
This weekend Maryam told Leslie she was having severe dental pain. Leslie and I made some calls and today (Tuesday), Leslie talked with a dentist who agreed to take care of Maryam. The dentist is talking with the palliative care doctor and we are ready to go. So now, we also have a Catholic Arab (a dentist) who grew up in Israel working with a Jewish doctor, a Presbyterian great heart, et al. to help a Muslim woman. As Mother Teresa said, something beautiful for God
I don't mean to go on and on and on about this, but truly, my wife is amazing. Sometimes, like today, when I found out about the dentist I was thinking, it's almost like she isn't real. How could anyone do what she does? I thought about her face, and how she is, and was just overwhelmed. Something beautiful, truly.

4/3 - Hallelujah
The other day I was looking at a photo of Maryam's cousin and Hallelujah was playing and I was thinking, truly, Hallelujah.
Maryam got to the dentist today, after several days delay. Leslie had to find a dentist (see 4/3), get medical records, wait on people and she's going, "grrrr, slow people drive me crazy." So today, Good Friday, about 7:20am it all came together and at 12:30 away we all went to a different dentist (slight change in plans - thank you Debbie!). Though Maryam did not want to lose her tooth, out it had to come. There was a slight complication with the extraction and the original dentist (see below) got involved. So now the dental problem is out of the way and now a Jewish dentist is part of this amazing grace. After the dentist we went to "the Arab store" for some food. Leslie and I ended up with some good olives and some flat bread. It's been a great day. Leslie's world circling, unfolding...
My sense is more and more people coming to see Maryam, like the Ethiopian woman who works at the 7-11 on Gaston and a young Sudanese man we met today. Next week the plan is for Megan, Stephani, Maryam, her cousin, and Leslie to go to the little Pakistani cafe next to the Indo-Pak Market. Leslie and I went there about a year ago - it's a happening place, oh, no doubt about it.

4/11 - To Maryam
Lying in the bed,
A little smaller each day
Slender once, thinner now
Mocha framing numinous eyes
                     
Quick mind, quick speech
Clear thin voice
Following each thought
Through this strange land
Where everyone everywhere every time
Has gone each time like the first time

Fearful
Smiling in the face of fear
We’ll not speak of this now
Now that we’re here
Here like all before
Here like never before

Last week seeing your sister
With drawn face
Open to her sadness and pain
When I came unexpected
Around the corner
Before she could cover her soul

We are flesh, blood, bone, skin
The carriages of our souls
Rolling through
These streets this life
This pain, this joy
This longing

You know and I know
What’s real (and what's not)
But we can wait for awhile
No need to rush to where we are going

4/11 - Burmese child
Caroline brought a Burmese (Karen) mother and her 8 year-old girl to the clinic today. The child has a life-long history of low-grade fever, her stools are clay-colored, and the stools have visible worms according to the mother. The family has been in the U.S. for 5 months. Nice work, refugee agency. For more than 25 years I've pulled people out of the depths of your inability to provide decent services for those unfortunate enough to be your so-called "clients." I cannot express the extent of my contempt and loathing for you. 
By the way, Maryam is another of this refugee agency's "clients." Leslie asked someone there if anyone from the agency had been to see her. No.

4/16, 4/17 - Grace unfolding and the trip begins
Leslie got a check and more today from a Muslim women's organization. The check will go to the dentists who volunteered their time to help Maryam. But there is more. The same organization got enough money together to cover all costs of funeral and burial when Maryam dies. Grace unfolding ...
When the secrets all are told
And the petals all unfold

Maryam's cousin - I keep calling her that because I won't use her real name here and didn't know another name to call her here - will see our psychiatrist this week. Ahh, but now I have a name: Nabila (meaning noble - yes, that works). She is there (in a small 1 bedroom apartment) 24/7, and not just with her dying cousin, but also her very mentally ill other cousin. Nabila lives in another state, been married for just a few months and now this. What an extraordinary person! Strong and sweet - an honor and blessing to know her.
Maryam is a refugee because she was a leader of a women's rights group in bleeding Sudan. Sudan, whose government sponsors the slaughter of 100s of thousands in Darfur. Sudan, where the value of a life is zero. What a price people pay for freedom and dignity. Women's rights - we should all feel humbled - well, I do anyway.

4/25 - Here is something one of my students wrote
Megan, week 5: I think we were able to form/recognize a spiritual connection this week.  Stephani was sitting on something that looked like a blanket, and I asked Nabila what it was – she told me they were their prayer mats.  So, we started talking about prayer – how we pray, things we pray for – and then, there was a warm pause – not an awkward, uncomfortable silence, but one that communicated something.  I smiled and was comforted that Maryam and Nabila have this source of power and encouragement.  I like to think that we pray to the same God.  Even though we may sometimes pray and practice in different ways, we are still able to share our burdens and find peace in a spiritual being – what a comfort to know that Maryam and Nabila can experience this.  We went to the Arboretum and had a wonderful time.  Maryam said she loved the fresh air (they were pushing her in a wheelchair).  She forced us to get ice cream – I think it’s funny (not in an ethnocentric way mind you) that in their culture that it is considered polite to forcedly insist that your guest eat – the more pushy you are the more polite you are (that just makes me laugh).  I will miss them.  I would love to keep in touch, but understand that I can’t make promises that I may not be able to keep.  They have changed my life…really…this is one of the first times that I have really formed a relationship with a hurting person, who is not in my usual circle, and not been on a mission trip.  This habit, this choice (to choose to love people in this way) can be a part of my daily life – a reality that I want so bad.  And, I have been blessed.  I think about them all the time, and hope that I will not just think but do.

4/25 - Here is something another of my students wrote
Stephani, week 4: This week with Maryam was very emotional and deep.  On Wednesday we were able to really talk to her about how discovering she had cancer made her feel.  She actually almost started to cry and it took all I had to hold back the tears.  It's amazing how much she is opening up to us as we spend more time with her.  I am so glad that we got an opportunity to talk about important issues like what she expects out of life these next few weeks.  I'm not sure if she truly comprehends what is going to happen as the days go by.  I didn't feel it was the right time to attempt to explain the path of her cancer and that it will lead to death.  I think everyone has the right to embrace illness and death at their own pace and I think Maryam will come to that in time.  So Wednesday was a very emotional day for me because we talked about the "valley of the shadow of death" and that is never easy.  Thursday was a much easier day and we talked about some fun things.  I am amazed at how universal conversations are for girls and how much fun it is sitting with Maryam, Nabila, and Megan laughing and sharing our lives together.  Next week we plan on going to lunch with Maryam and Nabila and we are all looking forward to that!

5/9/2007 - Clarification
A lot has happened since the last post. I don't know where to start except to say, first, we're fine - Leslie's fine, I'm fine. The past few days have been beyond stressful. Last week Leslie had a chest xray and then this Monday her doctor called to say that there was a suspicious finding and he had made her an appointment to have a CT scan Wednesday. Neither of us are under any illusions about lung cancer (almost always a poor prognosis disease), so this hit very very hard. I'm thinking a really good outcome would be tuberculosis. We're both pretty well oriented to life and values, but still, there was a clarifying element to these waiting days. Except for seeing David, for me, the trip suddenly had zero importance. The clinic seemed a burden. Work was just work. All that mattered was (and is) Leslie and David. We kept planning for the trip, but it was like going through the motions - still, we're all about keepin' on truckin'. 
Today, Leslie went for the CT scan - by herself - because that's the way she is. She called about 10:30 to say she is fine. The abnormality is from an old rib fracture. I'm giddy and weak and ecstatic all at once. 
Yesterday (Tuesday) I went to see Maryam and Nabila. A really great thing is that Maryam's Mom is here now - just came in from Egypt. Maryam looked wonderful. She's normally very pretty, but for the past several months has not looked at all well. But yesterday, she looked so good. Her Mom is kind of severe looking. Dressed mostly in black, shapeless full length Muslim woman dress, plain military-looking glasses. I guess she heard that Americans like to shake hands, so she stuck her hand out for a brief handshake. After that she sat on the couch next to Maryam reading. We talked more than usual and I stayed longer than on most visits. We talked a lot about Nabila's husband and how this situation has clarified and strengthened their relationship. Being a Muslim man, he does not have to let his wife stay away for any length of time, much less for months. They are newlyweds - what stress this is. But he has and gracefully. He also has dropped out of school to make more money to support this family of his. I'm sorry to say I haven't met him. This was an emotional conversation.  
Something happened while I was there. At one point Maryam went to the kitchen, slowly, with her walker, leaving Nabila, the Mom, and I in the living room. I looked at Nabila and said something like, "I don't want to talk too much; I don't want to answer questions. I want to ask you to pray for Leslie." She looked at me quizzically for a moment and said, "I will pray for her." Why did I ask this one person to pray for my wife? It's hard to say except that I experience her as extraordinarily strong and somehow closer to God than most other people I know.
When Maryam was in the hospital I said to her and Nabila that Leslie and I were in this (with them) for the long haul if they wanted and I would not proselytize. I told them if I said something about praying for them it was prayer only for their well-being and not an intro to anything. And that's how it has played out. The interesting thing has been that our relationship has been spiritually affirming for me, and I hope for them as well. And we have talked a fair amount about spiritual matters. Here, again, is what Megan, one of my students wrote (week 5): I think we were able to form/recognize a spiritual connection this week.  Stephani was sitting on something that looked like a blanket, and I asked Nabila what it was – she told me they were their prayer mats.  So, we started talking about prayer – how we pray, things we pray for – and then, there was a warm pause – not an awkward, uncomfortable silence, but one that communicated something.  I smiled and was comforted that Maryam and Nabila have this source of power and encouragement. 
Maryam and Nabila are moving to Colorado next week. Leslie and I are leaving for Asia next week. Looking back on these few months, it seems to me that a lot has been accomplished - almost all by or through Leslie: rent paid, food, dental care, active and enormously helpful involvement of Muslim women's group, Maryam's Mom coming to the US, help for her brother, and so on. Some beautiful non-essential things happened, too: going out to eat, the arboretum, flowers ... I think we've all learned a lot and made some serious connections.
Last week I told Leslie that of all the people I know, I admire her and Dan Foster more than anyone else.

5/13/2007
I just got back from my last visit with Maryam, Nabila, and Maryam's brother. They're leaving for Colorado this Tuesday - and Leslie and I are leaving the same day for Asia. M was in bed, her Mom was sitting on a prayer rug on the floor (reading? praying?), a visiting cousin was in a chair, and I was on another bed. Suitcases piled around. M's brother wandering in and out, but looking very good. He just got out of the state hospital and is back on his meds - much clearer now (Thanks, Diane). I said my farewells and it was emotional, but then they said, "Wait, we're fixing you tea." So I waited and had some tea and rose water flavored dessert and again said goodbye (I told Maryam I'd see her over yonder in the sweet bye & bye - I don't know if she believes it, but oh well, we'll see) and left. 
It's been quite a ride. Steadfast - justice, mercy, truth, strength, beauty ...
Maryam died a few weeks later.

1 comment:

Will Smith said...

Hi Charles. Moving pages about your journey with Maryam. Thank you for sharing. I have a question/security concern related to one of your Google site webpage for agapeclinic, though (yes, I know it was a long time ago). Please email me at will-dot-smith2-at-gmail-dot-com. Thanks.