Talk presented at the Yokohama Meeting, Sept. 1998
It is a pleasure for me to share my experience, and I hope that some of the parts are even a little bit helpful. It has not been very easy for me to put this story together, because some of the thoughts about my illness were very painful to think about again. What I have done is to take my life divided into five year time periods, and I have taken a handful of issues and looked at those.
I was diagnosed in October l977 when I was 7 years of age. I was diagnosed with a severe blood disease. My bone marrow, which manufactures my blood, was killed off for some unknown reason. The fatality rate of the disease is still seventy to eighty percent according to the medical textbooks. At that time there were no known survivors in the Southern Hemisphere, and I was given 2 months to live. My parents sought a second opinion. At that time there was no bone marrow donor that they could find who had the same sort of compatibility with my bone marrow. So what they decided to do was to keep me alive with blood and platelet transfusions and then give me a lot of steroids, cortisone and oxymethalone; and it worked. I missed a year of school through hospitalisation and isolation, but I was quite lucky that I was treated at home by my mother who is a nurse.
But my clearest memories of that time are ones of anger and frustration at not being able to play with my friends or do sports. It was a time of tremendous loneliness. I felt I was a freak; I felt different; and the medication I was on caused me to put on a huge amount of weight. At the age of eight I weighed thirty-six kilograms and was unbelievably ugly. When I used to go out in the street everybody would stare at me. They thought there was really something wrong with me. I went back to school about a year afterwards, and I was teased about being fat. I often felt that people were friendly with me because they felt sorry and pitied me. I think having a long-term illness makes you grow up very quickly.
I was very aware of the consequences of reactions; like if you jump up from the chair you might bruise yourself, and what will happen is that you end up in hospital and need a blood transfusion. I remember being very aware of the fact I might die. One of the things that I can remember quite clearly is that during one of my time periods in the hospital I was suffering from severe internal bleeding and major spontaneous nose bleeds. My nose bled all night and at that time I had long blonde hair. When my mother walked in the next morning my blonde hair was covered in blood, as was my face.
I wasnt allowed out of bed, so she set about washing my hair over the side of the bed. When I was cradled in her arms, one of the questions that I asked was: "Mummy am I going to die?" You can imagine that she must have had to swallow hard, but her response was: "No, because Mummy is not going to let you!"
As I know, it was not a spiritually accurate answer, but the important thing was that it reassured me that my Mum would fight for me, and that she was going to fight for me even when I did not feel like fighting. Now one of the things that I want to emphasise is that children understand a lot more than the parents have ever recognised. I remember going to the funeral of a friend of mine, who had a same blood disease as myself and died. I recall thinking: "that shouldnt have been him, that should have been me". Also I often didnt tell my parents when I was feeling ill or was in pain, because I was afraid of the fact that I knew they were going to worry, and I didnt want them to. So I was protective of them as much as they were protecting me.
I had a home tutor during the year I was off school, but in spite of that I landed up with a learning problem. I wasnt able to read very well. My parents picked this up and they went to talk to the school, but the school basically said "Neurotic parents; her marks are above average, so dont worry."
They then decided to have me tested privately and I had private lessons for three years as well as going to school. When I was eleven my parents did the best thing they ever did: they changed schools. They took me out of government school and put me into a small private school. That was fantastic because nobody knew anything about my past. I could tell them what I wanted to. By that time I was starting to look normal again, and I was able to join the swimming team, and hockey team, and netball team, and tennis team. My second year of school I became vice-head girl, and when I was eventually finishing junior school, I won a scholarship to go to one of the top academic girls schools in South Africa. So the extra lessons had paid off.
The most important thing was that my parents were applying a philosophy which they had of life; in other words they had three daughters and they wanted those three girls all educated, to have a career, and to be able to stand on their two feet. And all of a sudden that was applying to me too! That was a case of "Hillary you too have a future, so go and get it!" If I look at this age period from seven to twelve I realised that I was leading two lives. Hillary the Aplastic Anaemia (and I was often introduced like that at the hospital to the point that I thought I was a specimen), and Hillary the girl who just wanted to be completely normal and be treated as such.
And now I turn to the ages thirteen to eighteen when I was in a high school. This was very much catching up for lost time. I was quite sporty and I got my provincial colours for synchronised swimming. I played hockey; I swam in the first team; I was promoted as a prefect; I had a fabulous boyfriend, who was in the Air Force and had a car. What more could a girl want? I had a maturity, which was quite nice because an illness made me grow up quite quickly. I had not told my friends about my illness until my final year at school, because I didnt want them to know. I wanted them to evaluate me as to who I am. One more thing that I did when I was nine was that I joined St. Johns Ambulance, which taught you how to do first aid and home nursing. That was actually quite good experience because it gave me opportunities to play out my illness in a sense. It was also non contact sport and helped me. We got involved in competitions and getting rid of that competitiveness was important for me. It was something that my two sisters and I could do together and we all landed up getting involved in competitions together in first aid.
And then I went to University, but before I did that, I did Public Relations and a secretarial course and I also waitressed at night in order to earn money to go to university, because I paid my own university fees. I came out of school thinking that I wanted to do medicine but then I realised that I didnt like sick people; and especially I tended to get quite impatient if I thought they were not fighting enough. Which was completely irrational, but it was me. At university I felt I wasnt fitting in well with others, because all of my friends were out drinking and driving cars, bungee jumping and other dare devil things. For me life was too precious. I went through a stage of feeling quite directionless. I started to gain weight and I started to be depressed. So I decided to get an objective opinion. Its sometimes very difficult to talk to your parents, so I went to talk to a social worker.
I went through a number of issues. The first one was that I felt that I had been robbed of a childhood. My illness had taken that away from me. Ive never had a chance to be carefree, to play, and I had needed to grow up quickly.
The second one was as if I had a heightened sense of responsibility. I felt responsible for emotional trauma which my parents had gone through. I felt responsible for the financial strain that they were under because they had to decide to send us to private school because I had been ill and needed that. And I felt responsible for the fact that my sisters might have missed out some of my parents attention while I was ill.
Another thing was that I had a problem with relaxing or letting go. I felt I had to be in control of my life, and thats why it came out this time while I was directionless. Because to me, by being in control of myself and my life, I didnt have to be vulnerable. I was not going to be weak, thinking that by doing so my disease wouldnt come back. So this was a fear of recurrence.
One of the things was that I still perceived myself as a fat ugly little girl, in spite of having a boyfriend. But that didnt matter, and it was actually my father who helped me to concentrate on my assets. One day he gathered his three daughters and said "Girls, none of you are going to win beauty competitions, but you are tolerable to look at, you have brains, and you have definite personalities". So that was all right.
I had to learn to relate to my sisters. I have two younger sisters and I always felt the relationship was me versus the other two. I always control myself and tried to separate from them; that was my protection mechanism. I had to learn to be vulnerable; I had to learn to show my emotions, to be warm. By doing that they related to me, and I can now say I have an excellent relationship with my two sisters.
Then of course this is the sixth one: over protective parents! The good thing is that they can be trained over years; and the bad thing is that every time you get a cold they tend to start becoming concerned. I moved to London two and a half years ago and before I left South Africa, I went for every single medical check-up you can possibly imagine. Once that had happened, my mothers mind was put to ease and I finally got on the plane. But one eventually learns to humour them and you go with the flow and decide not to fight.
One more thing that was quite unique to my sisters and in particular to me is my parents. As a result of my illness they decided to get involved in the organisation and setting up of the parent support body. My parents got very involved in this, and there was a stage when they were so involved in running shops, organising fund raising events, and helping other people. Fortunately weve got used to the invasion of the charity in our lives, and just as well we did because they have done some fabulous work. You will see such activities not only in South Africa but also in many countries around the world. Its phenomenal, just parents helping each other.
There were many issues that I talked about, but I continue to battle with life. There is a whole thing of how do you cope with having been given a second chance of life? It puts a tremendous burden, and if you achieve, is that really good enough? Thats something that I still grapple with. That was age nineteen to twenty three.
At twenty four I finished University and I went to work for a training consultant for two years. I travelled around South Africa and trained staff from many blue chip companies in positive and professional communication skills. Two and a half years ago I moved to London and now I work as a recruitment consultant, specialising in temporary staff for property companies and governmental departments. I went to follow my dreams; I wanted to work there; I wanted to travel; and most of all I wanted to prove that I can come out of a very nurtured environment to stand on my own two feet, which is a very natural thing.
There are a couple of issues that still arise as an adult. The first one is that it is very difficult to get life insurance. I was turned down a number of times before I actually managed to get accepted, and although I now have a life insurance policy, it is loaded 2.5 times, which is quite high. Its difficult to get medical cover, and often they have a whole lot of exclusions based on what illness you had.
For me because of my medication I am always concerned that I might be infertile, or that I might never be able to have children. That is a concern if I think of relationships, or about marriage, or a new boyfriend. When he hears about the fact that I was ill, how will he react; run a mile? If so, that is fine; he wasnt worth it in the first place! Then the other thing is that there is always a fear of recurrence. They didnt know what caused my blood disease; what happens if I come across that same thing again and it happens once more? I even think: do I carry a gene which makes me more susceptible to getting that disease? And if I have children will that be passed on to them?
I dont have any anger or regrets. It was the best thing that ever happened to me, the fact I became ill. Its been the situation that has unified my parents. If I think about what happened and what is happening, there is a reason for it. I feel I fought against a disease and survived. I overcame a learning problem and thats given me tremendous inner strength and tremendous confidence. It changed my perspective of my life quite radically, and I feel as if I could face any challenges that life throws my way.
And now its time to work hard and play. Im going to make up for that lost childhood!