An Update

I am back in the UK now and working hard on putting together the final documentary, and lots has happened since my last comment so I think it is time for an update.

I have been truly touched by the response to my blog and the generosity shown towards Dr Pendsey and his staff. Although I shall not name her, one wonderful lady has given £1000 to help the diabetic children at the Dream Trust, and this will pay for 5 children to be sponsored for one year. Entirely fabulous news.

I have narrowed down which stories I want to use in my documentary, although these may well need to be cut down again. It is a hard job, because EVERY SINGLE diabetic the DREAM Trust has helped has an original and special story to hear, and one that the world needs to hear. If only I didn’t have only thirty minutes to squeeze it all into!

The project should be completed by Friday 19th August, after which point I will also be putting together some of my favourite clips for the DREAM Trust to use.

I once again implore anyone who feels they can help the Trust in any way to get in touch, either with me or with the Trust directly. The Trust needs support in several ways if it is to continue its life-saving work.

– £200 a year provides insulin for a child for one year. If you sponsor a child in this way you will receive photos and information about the child and be able to communicate, send gifts and even visit them.

– The Trust also welcomes donations towards educational scholarships for the children, and needs funds to provide education, picnics and other events which encourage social cohesion and help the young diabetics learn to deal with their condition.

If you think you can help, or know anyone who can, I urge you to do anything in your power.

 

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City Girl, Country Mouse

I decided to combine yesterday’s experiences visiting the homes of urban patients with my experiences today with the rural patients. This is partly for comparison purposes, but also because after some of the emotional situations I observed yesterday I wanted time to reflect so that I could do justice in relating them.

Perhaps because I have grown up in the countryside, I find urban poverty much harder to comprehend. I headed into some of the poorest districts in Nagpur, along with Seema and another member of staff from DREAM Trust. I think we are bombarded in the UK with representations of the developing world, whether it be images of starving kids on charity television adverts, or the Geography school textbook case study, “Anna is 7 years old and lives in a mud hut with her six brothers, ten sisters, blah blah blah”.

However such images and information cannot compare in any way with seeing poverty first hand. I have travelled widely over the last few years, often volunteering with disadvantaged or the needy and observing their homes. However India so far has been everything I have seen before TIMES TEN, and this was no exception.

To get to the first home, we had to park the car and walk because the homes were precariously balanced, ramshackle corrugated this-that-and-other, squeezing together in every space imaginable. Small children seemed to be everywhere; there was a trickle of dirty water running along the narrow gap down which we passed.

We had to stoop down low to enter the house, which had no door. It sounds strange but my first reaction was to look around for the entrance to the “other room”. Of course, this was the only ‘room’, tiny, painted bright green and with all the equipment necessary for living hanging from every piece of wall space. It was like an oven, sweat gleaming like emeralds on the walls.

Father, mother and three children live there. Father lost his arm after getting an infection and not being able to afford medical treatment. I realised why  I had seen so many small children on the path; I wouldn’t want to spend much time inside either.

The second house we went to was even smaller, and bright blue both inside and out. The young woman who lived here lost her parents when she was small, and the rest of her family disowned her because of her illness. Somehow her and her brother scraped by, living in a room which was pretty much just a bed. A toothless neighbour came in to boast that she had found the patient a potential husband; the girl just gazed brokenly at the earthenware pot containing her insulin. 

Not all the city stories were so depressing- we met a beautiful woman and her husband, who had successfully had a baby. Even the saddest story of the afternoon had a golden lining, thanks to Dr Pendsey. Another lady named Seema, whose father used to be an alcoholic. Her mother could scarcely afford to feed her children, and told me how “she had to break one roll of bread between four children”. Seema’s health suffered badly, and it is really a miracle she is alive. DREAM Trust has bought her a sewing machine and now she gets money for hemming and stitching beautiful saris.

I will only share one story from the villages because I think it illustrates best my hope for what I can do for the Trust. Dr Pendsey, Mrs Pendsey, Seema and I travelled out into the countryside- a different kind of roadtrip- driving across acres of beautiful green ‘tiger territory’. It really was like something out of Jungle Book. The village I describe was blocked by a huge herd of goats, and the jeep had to blare its horn to get them to move.

As they bleeted away, a beautiful, doe-eyed little girl with a green and golden sari appeared from their midst. She had come down to wait for us and guide us to her house, and her name was Nandini, which means, “the one who brings joy”.

Nandini is eight years old. She lives with her mother, father, and brother, who is a little older than her. When she was five, her family found out she had diabetes. For two years her family had to pay for her insulin. Her father earns 100 rupees a day as a farm labourer, and her mother 50 rupees a day, when she can work. The insulin was costing more than a third of their monthly income. Nandini’s mother explains how they used to starve so that they could keep her alive.

Another problem was that they could only obtain, and afford to buy, around a week’s insulin at a time. However, as they live in a remote village, they were having to take a day away from work to go and buy it, and also pay the travel costs.

Thankfully they heard of the DREAM Trust, who now provide them with free insulin, and will also dispense up to 6 months supply at a time. This has been life-changing for the family, and for Nandini’s future.

However, although DREAM Trust has promised to help Nandini, she is on the waiting list for a sponsor, along with many other children like her. £17 a month is so little to us in the UK – my phone bill costs significantly more! For Nandini, it is the difference between life and death.

I truly hope that through my work, whether or not I can get it broadcast, I will be able to spread awareness of the wonderful work this man has done for all these children.

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The Man Himself

It is a special thing in life when we have the privilege of meeting someone with that glimmer in their eye, that spark of dogged, relentless creative genius. The only time I have ever seen it before was in my beloved late grandfather, who never lost his dream of making access to educational leisure facilities affordable for all. Today I saw it again in Sharad Pendsey, the Doctor who Dreamed.

I had been anticipating this interview for weeks, if not months, and knew that it was crucial; the cement for my project. After all, the DREAM Trust is Dr Pendsey’s story, and this place would be nothing if it were not for his vision and perseverance. 

Let me tell you a little about the Sharad Pendsey I have come to know over the past few days. He operates out of a small and modest office, the walls of which are dominated by dusty volumes on diabetes, an awards cabinet, and letters from patients. One such letter reads “you are as a second father to me”. As I have mentioned before, I only have to say Dr Pendsey’s name to make the shyest of children light up.

And for the man himself- he is on a one road track, and as steady and indomitable as a steam roller. I wanted to know what motivated him, for it is certainly not the shelves of trophies glinting behind his desk. It is hard to keep dry eyes whilst writing this, never mind whilst interviewing him.

He ran, and still runs, a private clinic for Type 2 diabetes patients, and explains from time to time poor children with Type 1 diabetes were brought to him. These became his side project, of sorts, who he tried to help. However it was the death of two small girls that motivated him into action.

He explained how insulin often costs around a third of a poor family’s income, and that for a girl, having diabetes means a low chance of marriage due to associated stigma. He found out about the death of the first girl, who he had been treating, when someone from her village told him how the family had withdrawn insulin deliberately. The second child was brought to him in a terrible state.

“I ran down the stairs of my clinic where her family had laid her. They had travelled 200km. I asked them what had happened, and they told me that they had used alternative medicine because they believed it could cure her. She died in my arms.

“This was when me and my wife knew that we had to do something.”

The ‘something’ grew into the DREAM Trust, starting out as five children who were sponsored for their medication and health care. Today the Trust has effectively saved the lives of over five hundred children and has sponsors worldwide.

It is hard to convey the genius of this man in words, and perhaps that is why I love the radio form so much. When you listen to him speak, and the way his voice moves with both passion and emotion, you will understand. His dedication is utterly humbling. The Trust is his life- he even LIVES in the clinic, in his residence downstairs.

His creative powers are demonstrated by his creation of the DREAM Trust pots, which are have two layers and are used to keep insulin cool in poor villages where there are no refrigerators, and the temperatures soar to over 40 degrees in the summer months. I asked how he came up with the idea.

“Well, I was at an exhibition and they had a giant pot they were using to keep vegetables cool. I asked how it worked, and when I returned to Nagpur, I went to a local supplier and asked him whether he could make a small version.”

These pots cost around $1, and are literally life savers, preventing families from having to make weekly trips from distances of up to 18 hours return journey away. My translator told me today that some children live so far away that they have to travel to the nearest train station and sleep on the platform before travelling here in the morning. Tomorrow, when I visit the villages, I think I will see more of these particular problems.

I have to share one last story with you, although I will not go on too long. Today I interviewed a girl whose suffering is beyond anything imaginable to you or I in the UK, and when the Doctor told me her background I was not even sure I could do the interview. However I think a journalist’s job sometimes to bear witness, and she had come to the clinic especially because she wanted me to hear her story. A tiny girl with a beautiful green and golden outfit sat beside an Indian nun, who frowned protectively around the room. I cannot name the girl so shall refer to her as X.

X developed diabetes when she was much younger, whilst living in a rural village. However she was not correctly diagnosed so was often ill, and her parents neglected her badly. They both remarried and neither wanted to keep her- first, her mother threw her out, and after only just one month her father too. She was deposited at the orphanage in a pitiable condition, extremely ill and terrified. The missionaries brought her to DREAM Trust who treated her, but it took her almost 8 months to speak to anyone. She is now in her 20s, and has stunted growth because of how her diabetes was wrongly managed.

Her situation was so depressing. When I asked her of her hopes for the future, she could say nothing. She could think of no future. For her, future was a life destitute, uneducated and stranded at the orphanage, helping the nuns with the smaller orphans. She was so timid, she could barely speak and only said a few words, and her hands were shaking. Within moments of us beginning talking the tears began sliding silently down her cheeks.

Dr Pendsey is encouraging her to make small things to sell, to bring in some income and to develop self esteem. She gave me a beautiful card she had made herself when she left- a photograph of some roses, framed by pink embroidery. I think her situation demonstrates the layers of complexity surrounding diabetes for girls living here.

I have just had my lunch prepared by the lovely Mrs Pendsey. My appetite is still so small I feel so guilty about barely touching her delicious home cooked Indian food. She bought me a traditional Indian coral-coloured shawl, which the ladies showed me how to wear. This afternoon I am going to visit the homes of some diabetics living in the city. I have also taken lots of photographs today around the centre. The surroundings are modest, but what they have achieved is mind-blowing.

It feels strange that tomorrow is my last day here, and I will be packing my bags later. I am ready to leave, however, as I have a HUGE quantity of audio to work with. With the addition of the field recordings I make today and tomorrow, I hope I can put together something both moving and informative.

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Rains and Recovery

After a feverish night I woke up this morning feeling slightly better.

I was very glad to be able to come to the clinic, and it was a heartbreaker of a day. My interviewees included some very tragic stories, and once again a few of them cried in front of me. Everything ran smoothly except an error with my recorder which required me to go back to my hotel 6km away and pick up a cable- on the back of my translator’s motorbike! Quite fun hurtling along the crowded roads, we even passed a wedding on the way- they seemed just as delighted to see me as I was them!

I met Alka, a 35 year old woman who married when she was just 15. She developed diabetes nearly a year into the marriage, but when her husband found out, he accused her of hiding the disease and tricking him into marriage, and abandoned her. Her life was left ruined- for the lower castes here remarriage for women is frowned upon. Dr Pendsey employed her at the clinic to enable her to live, as her family nearly disowned her and would only accept her if she was supporting herself. She is now working as a childminder to allow other women to work, an irony considering that her own chances of a professional career have been ruined by her lack of education and the stigma surrounding diabetes here. She wept as she told me about the shame and guilt she had felt when her husband left her.

I also met Salma and her beautiful 15 month old baby. She was unable to find an arranged marriage partner in her caste because of her illness, but fell in love with a Muslim boy (she is from the Hindu warrior caste). She had to run away with him because her family disowned her, and they married. He supports her and her illness but she says she weeps every day because she misses her family, and how this makes it harder for her to cope. She suffered two miscarriages because her diabetes was not controlled properly- however she is now a proud mother, proving everyone who doubted her wrong.

Although this place is full of sadness, it is also full of moments of hope like this. I met one of DREAM Trust’s biggest success stories- Type 1 diabetic Manda. Coming from an illiterate, low caste family, she was determined to help others in the way she had been helped with her illness, and was had a dream to become a nurse. She had to hide the fact that she was diabetic both from the college and her roommates whilst she was studying, because it could have caused her to be refused from the course. This included submitting samples of her father’s urine instead of her own during college medical checks, and even taking her insulin injections hiding away in the bathroom! Whenever she felt her diabetes rocketing out of control she would rush down to the DREAM Trust in the middle of the night to be stabilised, before going back to class the next morning as though nothing had happened. She is now a government nurse and one of the most respected members of her community. She explained how she had several engagements fall through because of partners discovering her condition, but finally married without telling her husband. She revealed the truth a few days ago, but because she is such a respected and self-sufficient member of the community, her husband is happy to accept her condition.

It really is shocking how much stigma and lack of understanding there is around Type 1 diabetes here. I had two little girls describing how their fellow schoolmates tease them and call them crazy, and another who described how she doesn’t leave the house often because other villagers make unwelcome remarks.

However I can’t help but feel that I am seeing the lucky ones here. All of them emphasise that if it wasn’t for the DREAM Trust their families would not have been able to afford both their insulin and their education. Many would have been dead.

I am currently waiting at the clinic for my first experience of the monsoon to subside. I had expected heavy rain for the duration of my stay but so far had seen none- until now. I understand why Indians speak about the monsoon in awe-filled tones, it really is beautiful. The rain falls in thick drops, cutting through the humidity and rolling down the tropical green leaves. I can only really compare it to the rainforest, but without the overhead canopy of trees the drops fall relentlessly and unhindered. Anyhow I can’t get an auto-rickshaw until it stops- which could be 15 minutes, or all night!

Tomorrow I am spending the morning at the clinic, where I have ten people to interview, and am also going to do my very important interview with Dr Pendsey and some of his staff. In the afternoon we are going to visit some homes of diabetics living in the city, so a long day- 9:30am-7pm! Hopefully I will be fully recovered by then.

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Day 1 at the DREAM Trust

I woke up today the way nobody wants to wake up when they are alone abroad, or ever in fact- clinging to the toilet seat, ravaged by mosquitos and unable to keep down any food. I have eaten so little since I got here that I have no idea what made me ill, or what to avoid eating in future!

However I decided to try and power through because I had an important day ahead. Today was Dr Pendsey drop-in clinic for Type 1 diabetic children from across the state, some of whom had made a 12 hour return trip to pick up insulin they simply could not afford otherwise. 

Dr Pendsey’s wonderful assistant Seema helped me with translation, which worked surprisingly well (I had been having sleepless nights over it!) both because she had such a good rapport with the patients, and was patient in teasing their answers out. Many of the children were very shy of me, and often it was the parents who had to answer on their behalf.

It was quite an emotional day and would no doubt have been more emotional if it were not for my fragile state. I spoke to those who were suffering horrible side effects because they cannot afford appropriate treatment, those who were so shamed by their illness that they were unable to tell anyone outside the immediate family, and those whose futures were blighted by their illness.

I will share a few stories which truly stood out to me. When I asked 15 year old Renuka’s father, an illiterate farmer, how he had reacted when he found out about his daughter’s condition, he suddenly switched from his local tongue into English. “We cried, and cried, and cried” he told me. Shortly afterwards I asked Renuka about life as a diabetic girl, and her future, she had no words, only tears.

11 year old Chaitali was visiting the clinic with her grandfather, and had a similar reaction. Her only words were “why me?”

There are plenty more stories I need to share with the world, but just one last one for tonight. Nirmala is an unusual patient at the clinic, because she is 41 years old. However the clinic judged her need to be so great that they treat her. She is illiterate and had to sign my consent form with a thumbprint. I asked her what would have happened if she didn’t hear about the DREAM Trust. Once again, tears rolled down her face and onto her beautiful sari. “I would be dead, now”, she told me.

All of the patients I spoke to had one thing in common; an unfaltering respect and gratitude for Dr Pendsey. Even the shyest child’s face lit up when I mentioned his name.

Seema told me she used to cry almost every day when she started working at the DREAM Trust. 14 years on and her eyes still filled up with tears translating some of the experiences of the patients. As a journalist it is so hard not to get involved in such emotional stories, and remain objective- Seema definitely caught me looking a bit teary-eyed!

I have so many recordings now and I have been trying to log and sort them, also clearing space on my Marantz for tomorrow. This should make my job a lot easier when I get back to the UK. I took a few photos today, but want to take some more of the clinic tomorrow. I also recording some ambience-background noise- of the clinic, whilst it was busy and buzzing.

In other news, I have relocated to a much nicer hotel- which costs the same but is on the outskirts of the city. The gecko running across my face last night was the final straw for me! They have been so friendly so far, to the extent of asking if they can have photos with me- they say they have never seen a white person in the flesh before! That gives you an idea of the kind of place I am in.

This evening I have been running a fever and am my crossing fingers and toes that I feel better by tomorrow. Dr Pendsey has called in some special patients with particularly interesting stories for me to meet, and I also need to conduct my interview with him- after all, this is his story.

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Welcome to Nagpur

So I have been in Nagpur for around 30 hours now- an intense cultural immersion!

Today was my day to acclimatise – although that would probably take me more like 24 weeks rather than 24 hours!

However I have now found a hotel where there is internet and my equipment is half secure!

This evening I met Dr Pendsey, who I am going to be working with for the next four days. He is an utterly remarkable man, both in his achievements and his hospitality. He welcomed me into his clinic, where his desk is towered over by a huge awards cabinet.

I am going to be attending his clinic tomorrow, where children and their families from across the state (up to 200km) drop in to pick up insulin. There are sure to be some great stories in there! One of his staff is going to help me with translation and I am going to write up some questions tonight so that the kids have something to get them started. I have been warned that they are shy so it’s going to take all of my interviewing skills.

Friday Dr Pendsey is going to call in some patients whose stories he thinks I will particularly appreciate.

Saturday, we will spend at the clinic in the morning, and then in the afternoon we are going to visit some patients who live within Nagpur itself.

Sunday we are heading out into the villages around Nagpur to visit some rural patients and look at the particular issues they face, before I fly back to Delhi.

Except for a horrible, horrible moment when my Marantz didnt work, I think I am all set for tomorrow!

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Logistics

Once you have an idea, and you have funding, things don’t suddenly get easy! I was quite surprised how much more complicated the reality of preparing to go to India was in comparison to the ‘nice idea’!

These were all things I had to think about:

– Accommodation- I was lucky, as Dr Pendsey helped me arrange this. I will be staying at the Hotel Green City in Nagpur. My criteria were price (I am funded but my total budget is £1000!), distance to the clinic, and safety, particularly as a girl travelling solo.

– Clothing- lots of things to think about here. It is very hot at India at this time of year, but it is also the monsoon season! I also needed to think about local culture and not offending them!

– Communications- This is crucial on both a practical and safety level. I have both my usual phone with me and an old Nokia and am planning to buy an Indian sim so that I can ring internally cheaply. I have a (high-tech) system set up that I will text home every day at a particular time…if I don’t then family will contact the hotel…and panic will ensue!

– Contacts- On the ground I have two ‘fixers’ who I found through contacting Nagpur University- hopefully I will not need them too much but I have their contact details just in case and they have helped briefed me online on everything from local customs to the best place to get a curry!

– Equipment- I am taking a marantz, microphone, headphones, laptop, hard drive (for backing up files), Nikon D3000, and a flipcam. Spare Batteries! All of this needed insuring (which was actually through my home insurance) and carrying safely.

– Gifts- I am taking a small gift for the Dr who is hosting me, as a goodwill gesture for all the hard work him and his staff have put into arranging interviewees/ my accommodation etc. I am not sure that this is generally journalistic practise but I feel that because Dr Pendsey runs a charity, I can make a little exception here!

– Health and Safety Assessment Insurance- Both personal and for my equipment.

– Legalities- As I intend to have much of my recording publish, it is essential that I follow protocol. I have a copy of a release form, which explains to my interviewees that they will not receive payment and permits me to use/edit/broadcast the audio I record. I also have this release form translated into Hindi.

– Logistics- Trains and internal planes all booked with enough time in between to allow for delays.

– Medications- The fact I am visiting a doctor makes me feel much more confident about this. However I am extremely allergic to penicillin and a whole array of other antibiotics so not only do I need to carry a card to say this, but am carrying my own antibiotics. As Nagpur is malarial I am also carrying Malarone, however I am taking the German approach and will use it for treatment (worst case scenario!) rather than prevention. This is a personal decision based on the experience of other friends but also means a lot of extra care required on my part in terms of covering myself at night, wearing lots of repellent (probably controversially, I recommend DEET content 50%+ from previous trips) and sleeping under a net. I post the contents of my first aid box at the bottom of this blog.

– Money- It is illegal to import rupees so I have to take out money on arrival using my card. Also carrying back up card in case the first one gets lost or blocked, and some British currency which I can exchange.

– Visa- Involved a very early morning and a bit of queuing at the High Commission.

This is an inclusive list of everything I have packed, much of which I have learned from previous travel experiences.

FIRST AID

immodium

rehydration

plasters

paracetmol

hand sanitiser

disinfectant

bite soother

multivitamins

CLOTHES

long trousers

long lightweight tops

shorts

vest tops

flip flops

lightweight walking boots

lightweight scarf

PRACTICAL

sleeping bag liner

toothbrush

toothpaste

hair bobbles

hair brush

umbrella

rain coat

mosquito net/repellent

padlock

binbags (for storing wet/dirty clothes)

earplugs (for when it gets noisy)

passport

equipment

gifts

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