Sunday, 30 December 2018

Truth will out!

She came in to our hospital in the late afternoon 3 days ago.

A young woman, who we will call Laxmi, brought by her mother-in-law.   Sheba has been holding the fort as the only doctor for the past 10 days and so naturally saw Laxmi.

Laxmi complained of abdominal pain.  She had a child a year ago.  Sheba asked her if she was pregnant.  Laxmi said she wasn't.  Sheba asked about her last period - she said that she had not had any since she gave birth to her child whom she was still breast-feeding.

Sheba saw that her abdomen was distended.  "Are you pregnant?" she asked Laxmi again.  "No."

Sheba asked Martha the nurse on duty to take Laxmi to the examination room and prepare her for a pelvic examination.  Routine stuff.

Martha suddenly bursts in the door: "Doctor-ji, please come quickly!  The baby's head is coming out!"

Sheba moves over the examination room and sure enough, the labour has already been productive.  A child is very much on its way!   A trolley is organised quickly and mother and child (with mother-in-law in tow) are wheeled to the delivery room.  Our able nurses assist and a healthy baby girl is safely delivered at our beloved HBM Hospital here in Lalitpur.

So here is the question:  Did Laxmi know she was pregnant.

She denied Sheba's questioning and yet minutes later gave birth to a baby girl.  How is that possible?

Option 1:  Deception.  Laxmi knew but didn't want her mother-in-law (and various sundry others) to know.  Her response to Sheba was a clear distortion of the truth.

Option 2: Sheer naivete.  Somehow, despite already being a mother, Laxmi was guileless and unclear about another life growing within her and causing her body to swell and finally enough abdominal pain that she sought help from a hospital.

Option 3: Unstable mind.  Laxmi is in a situation where for some reason she cannot discern what is going on around her.  The questions that Sheba gives her as a doctor are not understood.  She is unable to respond properly.  A child is born.

Option 4: Denial.  The bulge is there.  But Laxmi doesn't want it to be.  And so it isn't.  If I don't talk about it, it will go away.  But of course, it doesn't.  And one fine day, the baby appears.


I really don't know which of the four possibilities Laxmi falls into (and when we say 'Laxmi' we of course have to include the extended family who have been living cheek-by-jowl with her over the past at least 8 months or so!).

But my guess is most likely that we are dealing with denial.   A straight out deception is just too hard to keep going.  But denial?  Well the human heart is almost infinitely able to trick itself. 

And so the thoughts have wandered to my own little bit of real-estate.  Who am I and what do I 'deny' in my life?  Even a short internal examination brings up a fair amount of stuff that just doesn't fit with reality.  I think of myself as a "people person" - "friendly and approachable"... and yet I know that many people come to my desk with some amount of trepidation.  My scowl often comes out when I think of myself as a "smiler."

And what of other things that are 'there but I don't want to admit it'?

The end of the year is a good time to reflect.  Is there something that I just don't want to admit - be it out of pride, or fear of being considered a loser?  Something that I am holding on to, something that is clear to everyone else except me?

Or perhaps even worse - something that I know that I should be doing - but keep procrastinating.  Keep pushing aside.  Keep not wanting to address because it is 'hard' and 'uncomfortable'...

Our Lord was no stranger to the two-facedness of humanity.  In His deep love for His disciples He rebuked them, and welcomed them back to Him with deep biting grace.   At one point Jesus said that if we hold to his teaching we are truly His disciples.  We will know the truth and the truth will set us free (John 8.31-32).  Truth must be out.  Truth must be acted on.

As I step into 2019 I want this to be true of me.  No more denial.  No more excuses.   No more pushing-off-until-tomorrow.  Deep breath.  Quiet down. Spend time listening. Dare to look honestly.  Write down.  Pray up.  Live out.


Thursday, 20 December 2018

Support groups

I have been part of support groups for the past 2 decades.  

My first exposure was in the North East.  While working with people who use drugs - or who used to use drugs and were trying to stay sober - I came across the 12 step process that Alcoholics Anonymous (AA) and Narcotics Anonymous (NA) use.  "Once a junkie, always a junkie" was heard more than once.  Walking along people who are working with addictions meant a lot of talking and listening and talking some more.

The real core of my support group experiences was the Positive Friends meeting we had on the last Wednesday of each month at the Jeevan Sahara Kendra in Thane.  People living with HIV got together and shared their experiences.  The sorrow and pain.  The joys of seeing small victories.  The multiple challenges of living every day in the shadow of death.  We met and sang and prayed, splitting into small groups at the end of the meeting.  We usually ended by continuing our conversations over a healthy snack and tea.   One of the core values of the Positive Friends group was the amazing benefit of People living with HIV having a safe space to talk - and to be with others who understood.

We started our first monthly meetings with our JSK staff usually far out-numbering the Positive Friends.  One memorable early meeting only had 2 people with HIV present - and one of them was working with another charity whom we had invite to speak to the 'group' - which turned out to be a crowd of one!  But over the years we saw traction and the support group continues even today - every last Wednesday of the month.

Our last 2 years here at HBM Hospital in Lalitpur we have been doing a variety of things - but support groups did not seem to be in the picture.  Things have changed a bit lately, though.

Earlier this year Sheba took on the role of the Palliative Care Coordinator for the hospital.  HBM has been doing palliative care for the past decade - starting one of the first rural palliation programmes and reaching out to families who are totally crushed by the hopelessness of terminal illness.

Our mobile team goes out by jeep - reaching families in a 50 km radius.  We have about 30 people with life-limiting diseases in Lalitpur town and care for another 60 or so in the villages.  Each family is precious and our team have done an amazing work building relationships with them as they walk through the dark valleys. 

The difference between the work here in Lalitpur and in Thane is one of community.  Our team go out and help people in their homes - but people getting palliative care and their family members and survivors have not really been meeting together.

Over the past 2 months we have made 2 small steps to rectify this.  On the International Palliative Care day we brought families together to the HBM Hospital.  We sat in a circle and took turns sharing about our experiences with palliation.  A nascent support group.

I use the word "we" because for the first time in the years of support groups - I am taking part as a member rather than an organiser.  Having lost Dad 2 years ago to cancer, and having had him cared for in the final weeks here at HBM, I am now one of the families who have gone down this path.  My fellow care-givers and those who are courageously living with cancer (the main need for palliation here) are ones who I share a common experience with.

Our most recent meeting was last week at the HBM Palliative Care annual thanksgiving and Christmas programme.   Amazingly, and totally unknown to us, the Jeevan Sahara Kendra annual meet was also held on the same day!

What a privilege to meet in the new palliative care ward - beautifully painted by the members of the Mission Direct team on their recent visit to us.  Besides singing and seeing a rollicking Christmas drama and hearing Sheba give a thanksgiving report of what the Palliative Care team did over the past year, the highlight was a time where people got up and shared a bit of their lives.

As a group here, we are still new at this.  Most have not 'shared' their stories with others.   Most do not 'know' each other.  The families who came have received help from the Palliative Care team - but have not really built trust with each other.  And then there is the challenge of having people with mouth cancer (the predominant cancer here) speak.  Some can only whisper.  Others have large disfigurations to their faces.  All are precious.  But we have some ways to go on our journey together.

It's a small start, but one with much potential. 

What support group can you be part of?  There is much to gain... and much to give as we share the journeys we are on.

Saturday, 1 December 2018

The beauty of normality

It's World AIDS Day today.  Another December 1st.  With a 2018 flavour to it.

The remarkable thing for me, is just how unremarkable it has become.  And I think mainly for good reasons.

We are witnessing today what we had hoped and prayed for 10 years ago.  A world where living with HIV is a possibility.  A world where just finding out that you are HIV Positive was not a death sentence.

A few small snapshots to illustrate.

Vignette No. 1
We work at a small Christian Mission hospital in central India.   One of my colleagues is HIV positive.  Amazingly, this colleague attended a conference on HIV what we organised in 2005 in Mumbai.  Our colleague is on regular medication.  This morning when everyone else shook hands with each other, so did this precious person.  Most of our staff know about the status of our colleague and our church routinely prays for strength and health with no one batting an eyelid.   The beauty of it all is just how normal it is to work every day with a person living with HIV.  One who last year celebrated 25 years of marriage with a supportive spouse.

Vignette No. 2
A few weeks ago I met a person working in our district of Lalitpur with an agency that works to break the transmission between HIV positive mothers and their unborn children.  You do this by testing every woman who is pregnant, and then both working to get the woman on the life-saving ART meds as well as giving a special dose at birth.  I asked him how many women they had detected in the last few months in the district.  His answer shocked me.

"We found one in August" he said.  One woman.  Only one.  In the whole district.  And that too 3 months ago.  None found in the following months.  I know that maybe not all the women were tested for HIV.  But to have such a low prevalence is nothing short of a miracle.  I am so grateful.

Vignette No. 3
As a family we returned to Mumbai for the first time in 3 years last month to be part of our church Family Camp in Khandala.  We were looking forward to meeting old friends and to being spiritually refreshed.  I didn't expect to run into a miracle.  What I saw was that so many of those of those present at the camp, literally dozens of people, were there because of HIV.   Some were HIV positive themselves (including teen-agers).  Others were kids of some of our HIV friends who had passed away in years past.  Others had been caregivers.  All were enveloped into the church.  All were part and parcel of the 300 plus lovely people who were attending the family camp.  The beauty of it was that it was all so normal.  No trumpets blown, no special fanfare.  People whose lives had been ravaged in the past now part of a family.

So here we are at the end of World AIDS Day 2018.

We are so glad that God has heard so many prayers over the years.  We are so grateful for the global roll-out of ART medications.  We are so thankful for the many, many who have worked on the issue over the years.  Every bit counts.  A small shout-out is in order to our past and present colleagues at Jeevan Sahara Kendra, Shalom Delhi, Salvation Army, the CORINTH network, CANA, Judah Trust, AIDS Hope and many others!  

Does this mean that there are no challenges left to deal with regarding HIV in our end-of-2018-world?

Far from it - there are challenges galore.  Our colleagues and Shalom Delhi tell us that new people are coming in for treatment all the time.  I still get the occasional phone call from Mumbai, where the caller tells that they are HIV positive, or have a relative who is, and need help.  So much of our sexuality is still very broken.  

But there is also real hope.  And so much progress in so many ways that we have a minor luxury of being able to deal with HIV as one of a spectrum of issues that face our communities rather than a single-do-or-die struggle.

For those of you who have been part of Sheba and my long and winding pilgrimage - which included 14 years primarily focused on working with people affected by HIV - thank you!