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糖尿病ネットワーク »  国際糖尿病支援基金 »  夢に向かう医師

夢に向かう医師
夢に向かう医師






Lucy Laycock's(ルーシー・レイコック)さん
(イギリス在住)写真中央

 ドリームトラスト(インド)が、イギリスのラジオ局より取材を受けました。
その時の取材内容を、インタビュアーのルーシー・レイコックさんが自身のブログにて公開していますので、その内容を一部抜粋してご紹介します。
ここでは、主にドリームトラスト代表のシャラッド・ペンデセイ医師と患者さんたちについて取材を行いました。

 ラジオ番組の製作にあたって、放送時間が約30分間と限られおり、取材内容全てを番組内で紹介することが出来ませんので、インドで体験してきたことや、ドリームトラストでの取材内容を、私自身のブログで記録として残したいと思います。

 私がこのプロジェクトに興味を持ったきっかけは、途上国など経済的に恵まれない地域を取材するレポーターを選出するコンテストで、私自身が英国代表に選ばれたことです。このプロジェクトの研修中に、非感染症同盟国が主催する会合に参加し、ある講演の中で「私は糖尿病よりも、エイズに感染したかった!」というカメルーンの糖尿病患者の言葉に心を打たれました。特に途上国へは糖尿病などの慢性疾患に対する国際的援助が無いというだけではなく、糖尿病患者が必要とするインスリン等の薬が入手でき無いのです。

 私の祖父が2型糖尿病患者であったことと、そして、4年前に従妹シャルロッテが9歳で1型糖尿病を発症したことにより、多少糖尿病に対する知識はありました。糖尿病はイギリス国内においても患者自身とその家族に精神的な負担(将来に対する不安や学校でのいじめ、就職や結婚に対する不安)がかかるため、途上国においては、その状況はさらに深刻であろうと想像しました。これまで、私は途上国に糖尿病が存在することや、何故、そのことが話題としてあげられないのかを考えたことがありませんでした。

 研修を終えて糖尿病について学び始めたところ、偶然インターネットで、インドのナグプールで、糖尿病の子供たちのためにクリニックを設立し、経済的な事情でインスリンを入手することができない糖尿病の子供たちを救うための活動を行っているドリームトラストのことを知りました。設立者のシャラッド・ペンデセイ医師が自身のホームページ上で、2人の糖尿病の幼い子供が命を落としたことがドリームトラストを設立するきっかけとなったことを語っており、その純真な熱意に感動しました。

 私は、ドリームトラストについて、メディアを通じて伝えるべきと考えました。しかし、実績も信用もない若いジャーナリストにとっては、スポンサーや取材旅費を捻出することが大きな問題でした。取材の趣旨を各社へプレゼンテーションし、このラジオ番組で取り上げて頂くことになりました。取材費用については、幸運なことに私が応募した「ワン・ワールド・メディア」での取材レポートが優秀賞をとり、その副賞をインドへの旅費等に充てました。




シャラッド・ペンデセイ医師について


 才能にあふれ、後光が輝く人と出会う貴重な機会に恵まれた時というのは、人生の中で特別な出来事となります。
他界した最愛の祖父以来、このような感覚を与える人はいませんでした。祖父は、全ての人が利用可能な教育施設を作るという夢を持っていました。夢を持ち続けるシャラッド・ペンデセイに祖父と同じオーラを感じました。

 私は、以前からこのインタビューに期待を寄せていました。
ドリームトラストの物語はペンデセイ先生自身の物語でもあるのです。先生は小さなクリニックを運営しており、部屋には糖尿病関連の書籍や、トロフィーが並べられており、机の上には患者さんたちからの手紙が積まれてありました。
その手紙の中には、「先生は、私にとって第二の父親です。」と書かれているものもあります。子供たちは、ペンデセイ先生の名前を口にするときは、うつむきがちな恥ずかしがり屋の子供でさえ上を向くのです。

 先生はもともと2型糖尿病患者のためのクリニックを開業していますが、経済的に恵まれない1型糖尿病の幼い2人の少女の死がドリームトラストの誕生するきっかけとなりました。

 ◆ドリームトラスト発足の経緯(ドリームトラストの誕生のきっかけとなった2つのショッキングな出来事)



 このようなショッキングな出来事を機に、ドリームトラストの設立へと発展しました。
初めは糖尿病の治療費用を支援してもらう形で5人の子供たちを支援することから始まりましたが、現在では、世界各国のスポンサーにより、約500名以上の糖尿病の子供たちの命が救われています。

 ペンデセイ先生の創意工夫は、ドリームトラストの壺にも表れています。
この壺は二層式で、夏の間摂氏40度以上になる冷蔵庫が無い農村地域や電力不足でインスリン等の保冷が困難な地域で、利用されています。

 詳しくは、森田会長「わが友、糖尿病」これからの国際協力 素焼きのインスリン保冷庫をご参照ください。


ドリームトラストの患者さん

 ペンデセイ先生のクリニックには、1型糖尿病の子供たちが遠方から往復約12時間かけて、インスリンを貰うためにやって来ます。これらの子供たちは、経済的事情で糖尿病の治療やインスリンを得る方法がないのです。

 クリニックへの訪問が嬉しい反面、心を痛めることもありました。インタビューした患者さんの中には、とても悲惨な状態にある人や、自身の話をしているうちに私の目の前で泣き出してしまう人もいました。多くの子供たちは、インタビューを恥ずかしがってしまい、代わりに親御さんたちが回答してくれました。話を聞いた子供たちの中には、恐ろしい「副作用」に苦しんでいる子もいました。その「副作用」とは、糖尿病であることに非常に負い目を感じ家族以外には秘密にし、糖尿病によって将来に希望を持てずにいるのです。

 今回の患者さんへの取材については、ペンデセイ先生の優秀なアシスタントの1人であるシーマさんが通訳をしてくれました。彼女は患者さんたちから非常に慕われており、インタビュー中も患者さんから上手く情報を引き出してくれました。
シーマさんは、14年前にドリームトラストで働き始めたころ、患者さんの悲惨な状況をみて殆ど毎日泣いていたと話してくれました。患者さんのインタビュー中は、目に涙を浮かべながら通訳しながら、目に涙を浮かべてしました。



 15歳の少女レヌカちゃんの父親は、経済的な事情で学校へ通うことができず文字の読み書きできません。娘が糖尿病を発症した時のことを父親へ尋ねたところ、突然、現地語から英語で話し始め、「途方に暮れて、ひたすら泣き続けた。」と言いました。また、レヌカちゃん本人に糖尿病患者であることと将来について尋ねると、何も応えず、ただ涙を流すばかりでした。

 同じく、祖父とともにクリニックに来ていた11歳の少女チャイタリちゃ んにも尋ねると、彼女もレヌカちゃんと同じ反応で、彼女が唯一言ったことは「なぜ私が糖尿病に?」という言葉でした。

 41歳のニーマラさんは、子供を優先的に支援するドリームトラストの中では他の患者さんと少々異なります。
それでも、ドリームトラスト側は彼女を支援することを判断しました。彼女は読み書きができず、私のインタビューの同意書にも指印で押さなければなりませんでした。彼女に「もし、ドリームトラストに出会っていなかったらどうなっていましたか?」と尋ねたところ、涙で顔中を濡らすばかりか、纏っている奇麗なサリーの上にまで涙をこぼし、「今頃、死んでいたと思います。」と答えました。

 インドでは、糖尿病に対する無理解と辱とされていることを示す、非常にショッキングなケースもあります。
ある2人の糖尿病の少女がクラスメートたちに虐められ、近隣の人々から不快な言葉を投げかけられるために、家から出られなくなることもあります。しかし、この子供たちは、ドリームトラストの支援によって、インスリンを入手し、学校へいくこともできます。もし、ドリームトラストが存在しなければ、多くの患者さんが糖尿病の治療が受けられず亡くなっていたことと思います。


Xさんについて

 イギリスでは想像もできない状況にある少女にインタビューしました。彼女は、私に話を聞いてもらいたいということで、クリニックにやってきました。その小柄な少女は、緑色と金色の美しい衣装に身を包みインド人の孤児院の尼さんと共にやってきて、苦々しい表情を浮かべながらも厳重に守られた部屋に通されました。彼女の名前を公表できないため、ここではXさんとしたいと思います。

 Xさんは、幼い頃に糖尿病を発病しました。Xさんの両親は共に再婚で、彼女を引き取ることを嫌がり両親は彼女を放置しました。Xさんはその後孤児院で引き取られましたが、そのような経緯があり、彼女は人と接せすることや会話をすることが出来なくなってしまいました。インタビュー中も一言二言で手が震えてしまい、しばらくすると涙が彼女の頬を静かに流れ落ちました。

 最初、Xさんは孤児院の宣教師とともにドリームトラストへ連れられてきましたが、先生やスタッフと会話ができるようになるまで約8か月かかりました。
彼女は今20代ですが、糖尿病に対する治療を正しく行わなかったために成長が妨げられてしまいました。

 彼女に将来の夢などを尋ねても、何も答えません。彼女にとって、将来とは孤児院で宣教師を手伝うだけの生活なのです。ペンデセイ先生は、彼女に小物を製作して販売し、収入を得ることと自尊心を育てることを薦めました。彼女が手作りのピンクの刺繍の入りのフレームに入ったバラの写真と美しいを私にプレゼントしてくれました。Xさんは、この地で糖尿病の少女を取り巻く幾重にも重なる複雑な状況を示していると思いました。
アルカさんについて
 アルカさんは15歳で結婚し、現在35歳です。
結婚する1年前に糖尿病を発病し、病気を隠して結婚をしました。後に夫がそのことを知った時に彼はそのことを責め、彼女と離婚しました。
 その後の彼女の人生は悲惨を極めました。低層のカーストに属する女性が再婚することは、忌み嫌われるからです。
 ペンデセイ先生は、彼女が生きていけるようにクリニックの職員として雇用しました。
その理由は、彼女は両親からほぼ勘当されたかたちでしたが、アルカさんが自立した生活を送ることによって、両親と和解できる状態であったからです。彼女は、クリニック内で他の女性たちが安心して働けるようにクリニック内でベビーシッターとしての仕事を与えられ、彼女が仕事をこなすことで、クリニック内で子供をもつ他の女性たちが安心して働くことができます。 我々には考えられないことですが、インドではアルカさんに学歴がないことや、糖尿病に対する無理解によって、活躍する場を与えてもらえないのです。夫と離婚した時の屈辱感と自責の念を、クリニック内を掃除しながら、話してくれました。
サルマさんについて



 サルマさんと彼女の生後15か月になる赤ちゃんとも会いました。
彼女は、糖尿病のために同じカーストでのお見合い結婚ができませんでしたが、イスラム教徒の少年と恋に落ちました。彼女はヒンズー教で戦士のカーストに属します。彼女は、家族から勘当されたため駆け落ちし、結婚しました。夫は彼女を支え糖尿病のことも理解してくれますが、彼女が両親たちを恋しく思い、家族との縁を切ってしまったことで苦労した日々を送らなければならず、毎日泣いて過ごしていました。血糖コントロールが上手く行かなかったため、2回も流産してしまいましたが、今は母親となり、彼女の行動が正しかったことを証明しています。


マンダさんについて
 患者さんたちの悲しい話が多い中、ドリームトラストのお蔭で成功した事例もあります。
 1型糖尿病のマンダさんは、低カーストの家庭です。彼女は多くの患者さんたちを助けてあげたいと決意し、将来、看護師になる夢を持ちました。彼女が看護師をめざして大学に通っているときに、糖尿病のために退学になる可能性があったため、病気であることを大学の職員やルームメートにも隠していました。
 大学の健康診断では、自分の尿ではなく父親の尿を提出し、インスリンはトイレに隠れて打ちました。糖尿病の血糖コントロールが安定しない時は、信哉でもペンデセイ先生を訪問し、翌朝の授業には何事もなかったように出席しました。
 彼女は今、政府機関の病院で看護師をしており、彼女は、自分が住む町で人々から最も尊敬を集めています。
 結婚については、今まで、糖尿病のことが相手に知られたために何度も婚約解消となってしまいましたが、最終的には、今のご主人に病気のことを隠したまま結婚しました。数日前、事実を告げましたが、町で尊敬を集めていることと自立していることから、ご主人は喜んで病気である事実を受け入れています。


インドの都市部と郡部に住む糖尿病患者さんについて

都市部の糖尿病患者さん
 私が田舎育ちのせいか、都市部の貧困について理解することが難しいのです。
ドリームトラストのスタッフであるシーマさんたちとナグプール市内にある最貧困地区へ向かいました。この地域は家が密集し今にも壊れそうな建物が多いため、車での移動ができず途中から徒歩で行かなければなりませんでした。

 最初の訪問先の家には玄関のドアが無く、私は腰を屈めて中へ入りました。
小さな家の中は部屋が1つしかなく、壁は明るい緑色に塗られ、全ての生活用品が壁のあらゆる隙間に掛けられていました。
その家には、両親と3人の子供たちが住んでいました。父親は感染症にかかり治療を受けるためのお金がないために、片腕を失ってしまいました。




 2番目の訪問先も小さな家で、家の壁は内側も外側も明るい青色で塗られていました。そこに住む若い女性は子供のころに両親を亡くし、親戚の家に引き取られましたが、その家族は彼女が糖尿病であることを理由に彼女を捨てました。ベッドが置かれているだけのその家に彼女と弟が分かれて住んでいました。

 私はこの地域では小さな子供たちが外のいたるところにいるように感じました。その理由は、子供たちは暗くて狭い家の中で、長い時間を過ごしたくなかったからです。

 私が訪問先や市内で見聞きしたケースが全て悲惨なわけではありません。中には美しい女性とご主人がめでたく赤ちゃんを授かったケースもあります。

 糖尿病患者のシーマさんは、父親がアルコール中毒症となり、母親も子供たちを食べさせることが殆どできない状態でした。一家の収入はゼロに等しいため4人の子供たちに1切れのパンを分け与えなければならない状況でした。
シーマさんの健康状態は思わしくなく彼女が生きていることが奇跡でした。ドリームトラストでは、支援プログラムの一つとして彼女に職業訓練としてミシンの使い方を習得し、今では美しいサリー繕うことで彼女は収入を得ています。

群部の糖尿病患者さん


 ペンデセイ先生、先生の奥様、スタッフのシーマさんと共に郡部を訪れました。
訪問先の村は、ヤギの大きな群れで塞がれており、ジープのクラクションを鳴らしながら車を進めなければなりませんでした。そうしているうちに金色のサリーを纏った、美しく雌鹿のような眼をした少女が姿を見せました。彼女は外で我々の到着を外で待っていてくれました。彼女の名前はナンデニちゃんといい、現地の言葉で「喜びをもたらす」という意味だそうです。

 ナンデニちゃんは現在8歳で、両親と兄の4人家族です。
5歳の時に糖尿病を発症しました。両親は彼女のためにインスリン代を稼がなければならず、父親は農作業をして1日100ルピー(約160円)、母親も仕事があるときに外で働きましたが、それでも収入はたったの1日50ルピー(約80円)でした。

 ナンデニちゃんのインスリン代は月収の3分の1以上を占め、彼女の母親は、ナンデニちゃんが生き延びるために、一家がどんなに飢えに苦しんだかを話してくれました。
  また、ナンデニちゃんの住む地域は、電力が無くインスリンの保存が困難な地域であるため、以前は都市部へ1週間分のインスリンを買いにかなくてはなりませんでした。そのため交通費や移動に1日以上時間がかかるため、ナンデニちゃんの父親、毎週1日は仕事を休まなければなりませんでした。
今ではドリームトラストからの支援のお蔭でインスリンが無料で入手できるうえに、1回で6か月分のインスリンを受け取ることができます。このことは、ナンデニさんの将来や健康状態だけではなく、彼女の家族の生活も変わりました。

 ドリームトラストはナンデニちゃんを支援していますが、彼女に特定のスポンサーがいないために他の子供たちと同様、支援の順番待ちをしている状況です。
ドリームトラストへのスポンサー費用200ポンド(年間/1口)は英国にいる我々に決して大きな金額ではありませんが、ナンデミちゃんたちにとっては、生死を分ける状況であるのです。


おわりに

 私のブログを見た女性から、ドリームトラストの子供たちのために匿名で1,000ポンドの寄付がありました。
これは、ドリームトラストでは、5人分の糖尿病治療費(年間)に相当する費用です。本当に信じられないことです。

 ドリームトラストへの支援を希望される方は、是非ご協力頂きますようお願いします。ドリームトラストでは、さまざまな形で、「命を救う」継続的支援を必要としています。
年間200ポンド(1口)で1型糖尿病患者さんのスポンサーになり、インスリンなど糖尿病の治療費1年分をまかなうことになります。スポンサーになると、毎年、支援する子供の写真と近況がドリームトラスト事務局から送られてきます。また、患者さんへ贈り物をすることもできますし、実際に訪問することもできます。
 ドリームトラストでは、子供たちへの奨学金や子供たちが社会から孤立しないよう、糖尿病を正しく理解するための勉強会・ピクニックといったイベントを提供するための資金も必要としています。

あなた自身がご賛同いただける場合、また誰かご賛同いただける方をご存じの場合、ぜひ、ご協力を頂きますようお願いいたします。
【English】


My Vision
I have decided to keep a log of my experience producing The Doctor who Dreamed, not only because with a 30 minute documentary can never tell all of the story, but because I hope it may inspire other young journalists to pursue similar projects.

I plan to detail all the preparations I make for the trip; from how I went about getting funding, to what additional considerations I had to make. There are so many things to remember, even as a tourist, and when travelling as a‘journalist’the list just gets longer! Most of all, by keeping a record of my experiences, I hope to provide another platform by which people might access my work and hear this important story.

The Beginning
The inspiration for this project began when I was selected as the UK representative in the “Young Reporters Against Poverty” competition.

I travelled to Europe with representatives from each EU country and received two days of journalistic training, before attending the European Development Days. I like to think that things happen for a reason, and although I was pursuing a different topic at the conferences, I had a break in my schedule and decided to attend ‘NCD’s: The Silent Killer, hosted by the NCD Alliance.

I had no idea what an NCD was, or why there was someone dressed as a white elephant in the corner of the room. However the words on the projector struck a chord, “I wish I had AIDS, not diabetes”- the words of a diabetes sufferer in Cameroon. The reason why? There is simply no international aid for insulin, the life-saving drug needed by those suffering from diabetes. I already knew more than a little about diabetes- my grandfather suffered from Type 2, and my cousin Charlotte (now aged 9) was diagnosed 4 years ago. If diabetes could cause so much heartbreak here in the UK, I could only imagine how hard it must be in the developing world. I had never even thought about the fact it might exist there- or why it was never really talked about. I found out that diabetes was classified as an ‘NCD’- non-communicable disease- which means it is not infectious, essentially, although it appears that it has literally been non ‘communicable’ in the Western media. Other such conditions include cancer, chronic heart disease and asthma. These conditions can often be managed successfully- however, currently less than 2% of international aid goes towards their treatment. Having been named as not only last year’s second biggest killer but also the second greatest risk to the global economy, I thought this was a great development story. The next stage when I returned to the UK was finding a way into the story, so I could share it with an audience who perhaps didn’t know as much about diabetes or development. Case studies are often used by charities for this purpose, and after a lot of internet research found my very own case study in Dr Pendsey. Miles away in Nagpur, India, he had set up a clinic for children with diabetes, and with intensive fundraising is providing life-saving care to diabetic children who have no other access to insulin there. I was struck by the honesty of his testimony on his website, as he described the deaths of two young children that had inspired him to begin his work. I had my story. The Pitch So, I knew I had a good story, one with both a personal (Dr Pendsey) and international (convenient UN summit taking place in September on NCDs) context. However, as young journalist, with no real credits to my name, getting funding for the trip was another matter altogether. I was lucky and extremely grateful to be awarded a grant by One World Media enabling me to complete this project. However in a time of cuts, funding opportunities are few and far between, and I believe that the amount of time and effort I put into my pitch was one of the reasons why I was lucky on this occasion. I have hosted my original pitch here so that anyone who is thinking of doing the same can see the depth of research I went into, and the planning which was necessary to produce a pitch that was half convincing. MY PITCH 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. 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!  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. 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. 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. 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. 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. f you think you can help, or know anyone who can, I urge you to do anything in your power.

2011年10月
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