Fumbling Through Raising Funds

I’m stumbling.  I know what I have to do and I’m not doing very well at it.  So I write, with two purposes in mind: 1. It may help me find my way out of the web I feel around me, and 2. I don’t think that fundamentally I am very different from others, and so when I have trouble solving a problem, I imagine there are others out there struggling with the same things.  I just do it more openly sometimes.  The third of my two reasons is that someone else might have some words to help me though this.

My goal for 2015 was to begin serious fund raising, building the future for Shishur Sevay because my personal funds are being depleted and I have to secure the future of the girls.  I’m guessing that none of you reading this are aware of my serious intentions because I think I’ve basically kept it a secret.

“It makes me feel like a beggar, too much like the lady on the street, body bent slightly forward, with her hand outstretched and cupped, saying, ‘Please, for my children, please.'”

To be honest, this is not all fantasy.  Asking for money leaves me open to a lot of painful comments and opinions, and when that happens it feels terrible and words invade my mind and dig and dig and I struggle for the words to pull me back up. Sometimes I go and sit with the kids, especially the little ones, just enjoying their presence, reminding me why I struggle so hard.  The big girls know something is wrong, but I don’t talk about it.  They have no idea that money is a struggle because I never wanted them to. Shishur Sevay is the only stable place they have lived and I don’t want them worrying, and we are in no way desperate, but it’s the long term that has to be secured. I’d like to build an endowment.  I get a small pension and social security.  When I die, those go.  And people think I don’t worry?  I started Shishur Sevay with a plan to raise about 8 girls to independence and I had the personal funds to do it.  All that changed when I saw the four children with disabilities, in the government institution, that no one would take, Rani, Bornali, Ganga, and Sonali.  I looked at them and said yes. That’s what disability does.  It upends plans.  It hijacks the future, but these children are the heart of Shishur Sevay, the heart of who we are, and they will need care for the rest of their lives, and the cost of the care that keeps them alive and full of joy is enormous, even in India.

The big girls do worry about my age and health. Reassuringly they once told me not to worry, that Andrei Dada (my son-in-law) would take care of them.  Yes, Andrei knows their expectations.  He is on the Board of Shishur Sevay, and he and Heather started Friends of Shishur Sevay a 501 (c)(3) in the US.  Cici’s wife Erica created  the website here and Goutami (Shishur Sevay’s first intern) completes that group of incredibly busy people who do it for the children, and also for me. I know that and I am grateful. Andrei is going to run the NYC Marathon this year and raise money for Shishur Sevay.  The secret is OUT!

It hadn’t all started out that way.  I came here on my own and though my children were proud of what I was doing, they would rather I’d stayed closer to home.  But then they came to visit and fell in love with the children and wanted to take them home with them…. And then Heather and Andrei had kids and now my grandchildren skype with my kids here and Heather tries to explain to her daughter how grandma is mother of all these kids, and mother to her mother…… well, these extended families!

I LOVED giving out money when I was at Johnson & Johnson.  Being a donor was an incredible high.  Fortunately I never took it personally as I was thanked, honored, etc.  Later on when I first came to India, I loved being able to give money and time.  Yes, it’s a high.  So it’s also hard for me to be at that other end.  You see when I was at J&J, everyone took my calls!  But now, raising money?  I get left wondering whether I should call again, or let it go, not wanting to bother people, not wanting to be perceived as a beggar….wondering whether I said something wrong, voice too loud, high, strong, deferential?  I wonder if I treated people that way?  I really don’t think so, but I don’t know how it felt to them.  Oddly, even people I helped often weren’t very nice to me, but that wasn’t what I was there for.  If I improved someone’s life, that was enough.

Two nights ago I was talking with one of the girls about how it felt years ago when we had some terrible battles going on here, with some staff successfully creating barriers between the girls and me.  I said it felt terrible, but I never thought to leave because in a way I won anyway.  I got to feed them, educate them, give them a safe place, and I sure wished it had been different, but they had hopes now, and a future….. and that is true.  I did it and do it because it makes me feel good. As for what happens when I’m gone, I think I put it best in a previous blog from 2011 here

I’m the captain.  The ship has to be seaworthy.  The crew has to be able to take over at any moment.  The Board has to be prepared to give direction to the crew.  All this needs to be in place.  It came to me pretty simply this morning.  I have to leave a seaworthy ship with a seaworthy crew, docked in a safe harbor.  I could not “rest in peace” otherwise.

But back to fund raising and the future.  I’m beginning to feel I have to figure out how to protect myself in all this.  Even as I write I cringe at things that have been said to me.  It’s been personal….  Maybe I need to become “A Beggar in Armour!” When I was with Johnson & Johnson I used to get dressed in the morning in my dark corporate suit, choose a blouse from a variety of whites and off-whites, pick out a suitable Hermes scarf, step into my Ferragamo shoes, put on my expensive make-up so I would look natural, face the mirror and say, ‘They think this is me!”  But that was the time I was in my final skill-building for what I have done since, and now, more than any other time in my life, I’m more me than ever, very strong and very vulnerable and I have to manage those contradictions to secure the future of my children.

I haven’t found an answer but I’ve laid out the landscape of the problem…. or rather the seascape.  Like everyone else, I’m a work in progress.

Michelle at the Helm of the Aquarius

Michelle at the Helm of the Aquarius, circa 1970

Raising Ganga – A Middle Chapter

“Raising Ganga” should be a book one day.  This is just a middle chapter.

Today we were driving to Apollo Hospital for Ganga’s check-up, I kept thinking of the harrowing and frightening drive there just eight days earlier, late in the night, as Ganga had thrashed, cried, kicked, yelled, and could not be soothed.  Whatever lingering doubts I still had about having wanted her in the hospital have now disappeared.  Ganga was clearly back with us, with her naughtiness intact.  We had some answers, but even more important, she was better.

I’d intended to post a blog when we brought her home.  I wanted to thank all the people who had written and messaged us on FB, and who sent their wishes, prayers, and told us of crossed fingers and toes.  Ganga loved hearing about their messages.  And I was immensely strengthened by the support.  Well, WordPress disappeared the post after I’d worked on it for seven hours. It’s taken me this long to put it together and add what we have learned.

CPSS-1542_WAs background, Ganga originally came to Shishur Sevay by the West Bengal Child Welfare Committee on 22 February, 2007 along with six other of the girls.  She was said to be 3-4 years old and weighed 7 kg.  She was floppy, unable to use her limbs or lift her head.  We received no medical information or history, other than the name of the hospital she had been prior to the government institution. Posts about her are listed in the Category “Ganga”

Last Wednesday Ganga became incredibly agitated and could not get through any of her classes.  She would be kicking, calling out, thrashing, laughing, crying…. and she was like this more of the day.  She didn’t want to use her eye tracker.  She was just miserable.  A few months ago we had started treatment for absence seizures.    Three years ago the neurologist disagreed even though the EEG showed changes indicative of epilepsy.  It took trips to three hospitals before anyone could sedate her enough for an EEG. Then a few months ago we started with new doctors, and initially she had major reactions to two of the medications, and was not any better.  So a month ago we took her off all meds, slowly, and she was relatively good for three weeks.  She again became miserable and irritable.  Then last Wednesday night we were totally unable to calm her down.  She had been unable to sit through classes, even Bengali class which she loves.   I felt helpless and afraid, knowing it wasn’t so simple to get medical care in the night. I didn’t want to be carrying this alone, and I was afraid I was missing something.

Ganga’s neurologist was out of town, but we were able to arrange for an admission, (we thought) which would mean we could have an EEG the next day.  We have no insurance, and the hospitals are eager to fill beds.  Once there we discovered that the ER team had to do their own evaluation.  After exam and routine blood tests they told us to take her home, that she was just irritable, and come back to OPD the next day.  I argued for her admission, and they said they could keep her for 24 hours but it would be in a general ward and no one could be with her and since she was thrashing about they would have to put her in restraints.   That refrain still haunts me, that they would put her alone, with no one she knew, and no one who could communicate.  So we got ready to leave for home.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Then the ER docs reached the doctor who was supposed to be the admitting doctor.  He told them that she had to be admitted to the PICU for 48 hours and in restraints.  No one could be with her.  No, we couldn’t have a private room.  Again, I said we were leaving.  The doc said, “We can’t let you take her.”  In the US this could be literally translated, so I asked whether he would call the police if I tried to take her out. “No, we won’t but you will have to sign that you are taking her against our advice.”

“I’m signing nothing.  I’m paying my bill and leaving with her.  An hour ago you told me she didn’t belong in the hospital, and now you say the PICU for 48 hours and NOTHING has changed except who you spoke with?”  I asked for the ER bill and then amazingly, they said she could be admitted to a private room and one person could stay with her.  I  lifted her off the bed just to demonstrate my ability.   In the end though, Purnima Massi and I both stayed.  The admitting officer gave us two passes, and we ended up on the Platinum Wing.  I was really worried about the cost, but I put the deposit on my American Express Card, and we were in.

Ganga thrashed in the night. They started an IV and said someone would have to hold her hand all night to make sure she didn’t take it out, AND, to make sure it didn’t bleed on the linens.  By 3 am they started a new anti-epileptic drug IV.  She just kept thrashing and moaning.  I would hold her hand and doze off through the night.  Sometimes she thrashed and called out.  I was grateful we were there.Holding her in the night, making sure she didn't rip out the IV.  There was a couch in the room, and Purnima slept there. By about 5 am we were sleeping and no one really bothered us for a few hours.

Morning rounds had a surprise for us.  The pediatric cardiologist who had evaluated her some years ago at Medica, and who had taken care of Tuni came with the other doctors.  He had been in the labs in the morning and heard someone talking about a patient named Ganga, and he thought it had to be our Ganga.  I was really thrilled to see him and his knowing us changed the atmosphere.  Now they understood about Shishur Sevay and about me.  The doctors all laughed now as i told my stories of how I had challenged the ER docs.  They apologised, and the head doc said, “I’m just sorry it happened to you.”  I said, “Don’t worry. It’s OK.  It’s my karma.”

I think the medication was helpful and Ganga was calmer when she woke in the morning.  Later on Thursday she had the MRI.  I was allowed to go in, and then invited to sit with the docs and watch through the glass and see the images.  Out in the hall they had said I couldn’t and Ganga looked at me fiercely.  I whispered to her, “Don’t worry.  If they insist on no, I’ll squeeze under the door or up over the ceiling and I’ll be there, even if you can’t see me.”  She grinned.  She understoodOn the stretcher about to go into the ambulance between MRI and EEG..   And what I said to the doc was, “I’m really asking you please to let me go in. I’m 72 years old and I’ve decided that having some peace of mind is really important.  I know she will be fine, but I will be at peace if I’m there and I won’t be if I’m sitting in the hall worrying.”

Friday morning she got her “naughty” back.  The nurse came in while I had her up sitting on the bed.  The nurse put the thermometer under Ganga’s arm, and turned away.  Ganga immediately raised her hand, watched the thermometer fall, and grinned. She had her naughty self back.

By now we felt there was nothing acute going on and it was time to try and talk with her by Tobii (her eye tracker device).  Purba came early with Ganga’s Didi, and they set up the Tobii.  Ganga usually prefers I not be involved.  She wants to talk to others.  So first on Tobii she chose all the people she wanted to come and visit.  She did NOT want to go home but definitely wanted everyone to visit her in the hospital.  The message bar at the top of the screen shows thumbnails of all the people she had chosen to come and visit.

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And then the doctors came on rounds while she was on Tobii, and so she spoke with them.  She asked, “Where do you live?”

2015-06-12 10.41.15_W     2015-06-12 10.41.37_W

She next asked, “What do you do? “The doctor explained his work taking care of children.  It took him a while to understand she wanted to give him her hand, but he finally got it.  She is a patient teacher.

2015-06-12 10.43.18_W   2015-06-12 10.43.20_W

When she then said, “Come again,” he laughed and said he thought it was time for him to leave.  What he said about her was that it wasn’t that Ganga wasn’t ready for the world, but that WE are not ready for Ganga.  He said she would have to teach us and I said, “that’s why she is here.”  He seemed startled and I just said, “Yup.”

We used Tobii much of the day, simply used the time  as a teaching opportunity.

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Most of the time Ganga seemed fine, but sometimes she was just miserable.  I have some thoughts about it all.

The MRI was essentially unchanged from three years ago.  For the EEG we only have a preliminary report that there were no spikes, unlike the one three years ago.  That’s good, if true, but even more important it means there is nothing neurologically major going on right now, and that is a huge relief.

They would have preferred we stay til Saturday morning, but I really wanted to get back to Shishur Sevay.  She had started the oral medication and was doing fine with it.   I wanted us home, in bed, waking up for Saturday morning Dance & Movement. We reached home by midnight.

A week later I’m even more certain about my thoughts.

1.  Since starting the medication she has had no staring spells or fearful looking at the distance.   So I think she was having absence seizures and this is the right medicine for her.

2. I’m certain she has Pseudobulbar Affect:  PBA is a neurologic condition characterized by uncontrollable, disruptive laughing and/or crying outbursts that are often contrary or exaggerated to the patient’s inner mood state.   Ganga still has bouts of uncontrollable laughing or crying, or a mixture.  Rani bit her hand and she started laughing and then crying and laughing, and couldn’t stop.   This has gotten worse over the past two years, but I’ve not been able to get the attention of the doctors on this.  Now I have their attention.  There is a relatively new medication, Neudexta, cleared by the FDA, and available in India.   PBA was part of what was going on last Wednesday.  We will begin treatment for this.

3. Ganga has often spoken up when girls have talked about finding their families.  She has insisted on joining the conversation, and what we can understand, she does remember her time before Shishur Sevay and she does want some sort of contact.   When she came, she would become really animated at the sight of any old people in white, reach out to talk to them, and puzzled when they didn’t seem to know her.  Records show she was in a hospital in Digha before transfer to the Government institution, and then to us.  When we were on vacation at Mondarmani Beach, we also went to Digha for a few hours.  She didn’t want to go, cried, pitched her body backwards.  We just thought she didn’t want to leave the beach.  When we finally left Digha, we realized we had been sitting along the water in front of the hospital where she had been that we put it all together.  Some records should be here in Kolkata but we have not yet been able to get them.  It will be a long process of trying to get the government to release the records, but we have to do that.  Searching for Ganga’s roots will certainly be another Chapter of “Raising Ganga.”

This has been a time of a lot of adoption talk, with Judi Kloper here, and then Reshma McClintock, an Indian adoptee with her film crew as she returned to Kolkata as an adult.  We don’t know what Ganga heard, or what she heard other people saying about them, or about adoption.  Both these issues, her past, and a lot of adoption/birth family talk may be why she is suddenly far more clinging and dependent on me.  We need to set up some Tobii pages for this.  This week all the girls talked about the areas they were found, and one remembered the village she was from.  It’s only taken eight years.  We will be putting up a map of West Bengal with markers from where each has come.  Ganga’s will be Digha.

5. Ganga is not at all at peace with her limitations.  She wants to talk and she wants to walk.  She is angry.  Last week she insisted on walking out the gate (she yelled at the guard to open the gate) and went in the lane and “chatted” with some of the local women.  I have video of it all.  All it needs is editing (and time).  Maybe we can skype with kids who have CP.  She wants a social life.  When she wanted to go to South City Mall, and we took her, she spent the time talking to sales people.  She looked at clothes but didn’t want to buy anything.  She misses school.  I can’t get her into any school here, but we have to find a way to create a better life for her here.  I hope one day to be able to create opportunities for her in the US, or Australia, or Germany, or elsewhere accessible, and more welcoming of people with disabilities.  I say this with sadness, including for the Indians who are equally upset with what goes on here.  Ganga is moving into the preteen years so we are dealing with hormonal changes.   When she was in school she always had a group of girls and boys who looked for her, talked with her, missed her when she wasn’t there.  Ganga wants to get married one day.  She wants a life like others.  In a staff meeting this week we talked about trying to pull together some kids just to take them to the mall once a week.

6. Ganga is a tense and stressed person.  She worries about tests, performance of any sort, and we need to find ways of her relaxing.  Her first real episodes of the PBA and absence seizures were when she was in school and had exams.  She needs to chill, but as we all know, that’s not so easy to do.  We have people coming to volunteer who do yoga and storytelling and I hope that will help her.

Looking back, I was afraid I was missing something medically.  I was just plain afraid.  As I write this, I realize how much I needed respite from sole responsibility for what was going on with her.  I needed to feel that help was a call button away.  And I needed to be able to focus on Ganga completely.    So I guess Ganga and I are both better.  We have some answers, and plans on how we approach her needs, and I have gotten some relief.

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Ganga is here to teach us……

 

 

The Girls and I Carry Our Vulnerability

I really hate danger!  Believe it or not, I’m someone who can be quite happy without it.  I don’t need it to give me a charge, or purpose.  I love sitting on a beach soaking up sun, or walking my dog, as I did in the US, or working in my garden, puttering, playing with photoshop, writing haikus, and even books….. I love to daydream, and I can lose myself in stupid TV.  I love the rush of falling in love, but not the subsequent fall…. I don’t seek danger, but it seems to come with the things I choose to do.  I think it’s because I don’t really factor it in my decisions.  “‘I’d rather not think about it, and then deal with it if I have to.”

0-wires_2425_wOur neighborhood criminals have started cutting our phone lines repeatedly, each time we have them repaired or repair them ourselves.  I think one of the men is obsessed with us, like a stalker.  He stands outside at night taunting our guard that all our cameras will never catch what he does. (He is right.)   He knows that ultimately we have no protection.

That’s exactly what I have to learn to accept.  

Last night I thought about moving, but it’s unrealistic.

  • Neither Shishur Sevay nor I personally, has the funds it would take.
  • Where would we move?  Some of our most committed teachers live nearby and teach when their kids are in school.  If they have to travel, too much time will be lost.
  • Property values have gone way up, but our house at the end of the lane would not bring us enough to get another comparable place and renovate.   I’ve looked from time to time at property and at houses — nothing we can manage.  Having children with disabilities requires a lot of specific alterations.
  • If we move locally, can we be sure we won’t be followed by our criminal stalkers?
  • If we move further away, where we are not known, can we be sure we will be safe?  Many homes for children live by undeclared policies that allow local men to have access to the children.  The criminals here ultimately want access to our girls.  That has been a source of conflict since the first days.  They wanted to be able to “come and go” as they wished.  It will be the same wherever we go.

I came to understand that the girls and I carry our vulnerability.  This evening we all talked, and the girls asked why I’d been sad looking.  They hadn’t all known about the phone lines, and I talked about my worries, how it had gotten worse.  I talked about my thoughts on moving but wasn’t sure we would be safe anywhere.  We are female.  I am not anyone’s property and as orphans they are considered everyone’s property.  It was personal and it was intimate.  I acknowledged that they had each lived in far more dangerous situations.  And then one of them said that when she got married and had a baby she was bringing her baby and her husband here to live.  Another suggested we have a building with flats and they could live with their husbands in the same building.  The ones who say they never want to get married want to stay here too.  I have no idea what the future will bring but for now, this is clearly home, their home… it was a beautiful evening.

On another note, this is a drawing done by one of our girls, an illustration for my children’s story:  Dreaming Wishes For Prince Dobu.

Princess Tikka and Prince Dobu in the Land of Dreaming Wishes

Princess Tikka and Prince Dobu in the Land of Dreaming Wishes

Danger Is Back

Many months ago the police finally cleaned out the criminals.  They cleaned out drugs, prostitution, and guns.  This was all right next to our home at the end of the lane.  One of the criminals, wanted for murder, is still on the run, though he has made brief appearances.  His son, whose family is here, is apparently out on bail.  He has come around at times, but mostly stayed away.

He is back, in full force.  He has been trying to involve one of our girls, though he has a wife and child, and other children around of course.  He tried to get her to steal money to give him.  He harasses us outside out gate.  It’s been annoying, but now for the last three days he is blaring music throughout the day and long into the night.  He is playing love songs so loud that with our windows closed it still comes in very loud.

Bijoy threatened him when he learned he was going after on of our girls.  That took courage, but I think the music is also revenge.

Two nights ago I went out late and asked him and his mother to turn the music down, which they did eventually.  But it was a Pooja celebration and I thought it would stop the next day.  This is the third night.  Yesterday he almost ran down one of our Board Members who was coming.  I heard that one neighbor had complained.  This criminal is supposed to be under close police supervision but one never knows which side the police are on.  And I guess everyone is afraid of him because I can’t be the only one whose home space has been invaded by sound.

In the past, the local “CLUB” and the police were involved with cleaning them out.  For whatever reason I feel more vulnerable now, maybe because as bad as his father was in some ways, he also kept his son in check at times.  And he is targeting us.

Sound gets to me.  I’m reminded of Penn Station in NYC where they blast music at night so people can’t sleep in the station. I tell myself I may just have to learn to live with it.  I even tried telling myself I might enjoy the music if I let myself.  I have lots of ways of trying to convince myself!  They aren’t working.

I lived with death threats here for years, with riots, with police here when I could get them.  But I thought that was all in the past. In the US, you look for a house in a cul-de-sac because it’s safer for children to play.  But here it’s the opposite.  If you live at the end of the lane, you are vulnerable to everyone along the way to your house.  If they have enough power they can stop the police from coming, which they mostly were able to do.  When I was doing renovations the criminals would stop the contractors and demand money.  

Sometimes it’s not easy, what I’m doing.  But then, that’s why I’m here.  I’m the wall between the girls and precisely that harsh and dangerous world out there.

 

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