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WE MISS YOU ALL Noerine Kaleeba: AIDS in the Amily

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WE MISS YOU ALL Noerine Kaleeba: AIDS in the Amily WE MISS YOU ALL Noerine Kaleeba: AIDS in the amily Noerine Kaleeba with Sunanda Ray Updated edition, with a foreword by Emma Thompson Noerine Kaleeba is currently the community mobilisation specialist at the United Nations AIDS programme (UNAIDS) in Geneva, and continues to serve as the patron of TASO. She was awarded an honorary doctorate of Humane Letters (Honoris Causa) by Nkumba University of Social Sciences, Kampala Uganda in March 2000. This was in recognition of her pioneering work in HIV and AIDS. She has also received awards from WHO, Sweden, Norway, the USA, Belgium and Senegal. Sunanda Ray is the Executive Director of SAfAIDS. Noerine Kaleeba: AIDS in the amily i © 2002 Noerine Kaleeba and Sunanda Ray Extracts from this publication may be freely reproduced for non-commercial purposes, with acknowledgement. A complimentary copy of any material using such extracts should be sent to SAfAIDS. These copyright conditions also refer to translations of extracts from the publication. Reproduction or translations of the book as a whole requires the written permission of all copyright holders. (unding for this second edition was provided by the UNAIDS Inter-country Team for East and Southern Africa. The first edition published by Women and AIDS Support Network (WASN), was funded by Swedish International Development Agency (SIDA). UNICE( funded the first reprint. Illustrations by Jane Shepherd Photographs by Noerine Kaleeba and Sunanda Ray Published by SAfAIDS, PO Box A509 Avondale, Harare, Zimbabwe Tel: 263 4 336193/4, (ax: 263 4 336195 [email protected] Design and Layout by (ontline Electronic Publishing, Harare, Zimbabwe Printed by Préci-ex, Les Pailles, Mauritius Proceeds of the sale of this book will be shared between hospice organisations in Uganda and Zimbabwe. Second edition 2002 (irst printed in 1991, reprinted 1992 ISBN: 0 7974 2525 X ii We Miss You All WE MISS YOU ALL Noerine Kaleeba: AIDS in the amily Noerine Kaleeba and Sunanda Ray The Names Project is an international project that commemorates the people whose lives have been affected by HIV and AIDS. Relatives, partners and friends have sewn panels with the names of their loved ones and some symbols of their lives. These panels are then joined together to make one enormous quilt that symbolises the grief and love felt by all these people for those who have died. It also makes a statement that their lives are important and that they are deeply missed. The original TASO quilt was the first African panel to be included. The title for this book, We Miss You All, was drawn from the second TASO quilt (shown below). The courage of the families who have put the names of their loved ones on the quilts have contributed towards a more open and supportive attitude towards people living with HIV and AIDS. Photo: Inge Tack Noerine Kaleeba: AIDS in the amily iii Noerine and Sunanda at the XIV International AIDS Conference in Barcelona iv We Miss You All Contents (oreword by Emma Thompson ix Preface to the Second Edition xi Part I: AIDS in the amily 1 The (ateful Telex 1 My (irst Encounter with AIDS 4 Meeting Chris 6 The War 10 My Journey to Chris in England 12 In Hospital in England 13 The Accident 15 My HIV Test 17 (irst Visit to Geneva: Meeting Jonathan Mann 19 The gay men in my life 20 Going Home 21 My Work as a Physiotherapist 24 (ighting in the Open 26 Why I came out in the open 27 Chris Return Home 29 The Search for a Cure 32 Chris (inal Illness 34 Part II. Tackling AIDS with TASO 39 Why I chose to live positively 43 The joy and sorrow of working in TASO 47 Living Positively with AIDS 48 Personal victory over the virus 52 Clinical Care 55 Counselling at TASO 57 Noerine Kaleeba: AIDS in the amily v Counselling the counsellors 58 (ighting in the Closet 61 Philly Lutaaya 62 Coming Out and Denial 67 Love Carefully 69 Traditional Versus Modern: Polygamy as I Grew up with it 71 Loving (aithfully: Where does it Start? 73 Talking About Sex 75 When one partner is positive, the other negative 79 Teenage Sexuality 80 Talking to my Own Children About Sex 82 Above all, the truth 83 Sexually Transmitted Infections and HIV 84 Inheritance and Other Laws 86 Orphans and Other Children Affected by AIDS 89 Conversations with my Daughters 92 And What About the Grandparents? 96 TASO today 98 Part III. rom Kampala to Geneva 99 Hope and dilemmas 99 (irst Steps Out of the Nest 102 The Move to UNAIDS 104 Loving and leaving 105 Coming Out as Sero-negative 107 AIDS Continues to Ravage my (amily 110 Pain: Still not a High Enough Priority 111 Hope for HIV-infected Parents and Their Children 112 Antiretrovirals in the (amily 115 My appeal to you all 117 My Personal Support System 119 Message for the (uture 124 vi We Miss You All Dedication I dedicate this book to six women: My five daughters Elizabeth, Julliet, Phiona, Marion and Christine and mother-in-law, Zabeeti, who silently mourns the death of her children, but has been a source of encouragement to me. A grandmother with an ever-increasing number of orphaned grandchildren. Noerine and daughters: Christine, Marion, Elizabeth and Phiona Noerine Kaleeba: AIDS in the amily vii Emma Thompson with Noerine Kaleeba during the ActionAid trip to Uganda viii We Miss You All oreword by Emma Thompson The author of this book has not had what you might call an easy life. After reading We Miss You All, I fully expected to meet a sad-eyed human crushed by the terrible burden of too much tragedy in a single life. However, when we were introduced by ActionAid (for whom she acts as the first African trustee), a six-foot amazon stood before me, youthful, articulate, boundlessly cheerful and extremely funny. She had just turned 50 and I asked what she was going to do for her birthday. There will be rejoicing she said, grinning from ear-to-ear, and many cows will die. I think we became friends at that moment. Noerine took me to Uganda in (ebruary 2002.1 It was a great privilege to visit the country that has spawned so many extraordinary activists in the AIDS battle, to meet Noerines mother and the enormous family that has become hers through the untimely death of siblings and cousins. The first thing Noerine did upon arriving in Kampala was to visit her niece Harriet, who is HIV-positive and had told Noerine she was dying. Until you die growled Noerine, you are living I will remind her of this. The remark gave me a clue as to what drives this incredible woman: an inexhaustible belief in and talent for being alive. Throughout our journey, Noerine kept me sorted. She forced me to eat vast mounds of matooke (cooked green plantain, the staple food in Uganda), dragged me into the bush to pee on our long journeys, cried with me when we visited the dispossessed amongst her countrymen, told me off for wearing stained old Scholl sandals on official visits, became my body-and-soul guard on a trip into the heart of this global emergency, AIDS. And nothing prepared me for the emotional impact of Noerine with her foster-children, a raft of little heads all bobbing around trying to get close to the mother ship. Nor for the sight of the graveyard near her house with its memorial stones for her sister, her brother, her niece... 1A documentary film of this trip called Journey of Hope was shown on British television in April, 2002. Noerine Kaleeba: AIDS in the amily ix It is difficult not to think of Noerine as indestructible. The energy she gives off is so life giving, her achievements are so colossal. But, towards the end of our visit, as we were re-entering the hotel, a young woman approached us. Noerine smiled with pleasure. This is my niece, she said, as the young woman fell upon her neck in floods of tears. Later, over a beer, Noerine told me that the sleek, smart, 26-year old professional had just discovered she was HIV-positive. (or the first time in our trip, she looked tired. I cant take her on. Ive sent her to a counsellor. They all think I can solve it. I pointed out that as a survivor, she has become a vessel of hope. People cant help wanting her care, her courage. But there isnt enough to go round. Already the monthly budget for her own house in Kampala has been stretched to breaking point by the arrival of another sick relative. Everyone thinks she is a bottomless pit of resources. I am not, she says sadly. There are heroes and heroines like Noerine throughout Uganda, throughout Africa, but none of them can do it alone. They need us to get behind them. With our help, Noerine will continue to make a huge difference, suffering will be alleviated, lives saved. But I always try to remember that the most important thing is the hand of friendship, the human connection, the understanding that AIDS isnt someone elses problem. Its ours. Ive never met anyone more impressive than Noerine Kaleeba. Please read this book and give it to everyone you know. You can help. Emma Thompson London, August 2002 x We Miss You All Preface to the Second Edition A decade has passed since we published the first edition of this booklet. Great volumes of water have gone under the bridge, a lot of changes have happened.
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