A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England

But I had to find out about the condition myself so I joined the Diabetic Association. I get the Balance magazines and when you go up to St George’s, you meet certain faces regularly so we formed a little clique and maybe sit in there exchanging information, who is on insulin and who is not and how are you doing. One or two were severe cases so from speaking to them, I learned that I had to look out for certain situations.

When I try to fill out the ethnic form I get so fed up I just tick whatever I fancy because I have six nationalities running through me. No two members of my family look alike but the African strain is there, the Indian strain is there, the Chinese, the European, Red Indian. Now if you want to work out which, but this is what I mean with Guyanese society, the only thing I missed out was Portuguese. the Portuguese who immigrated to Guyana came from the Island of Madeira. And in the good old colonial set up, if you were not English, Irish or Scottish, you were not classed as Europeans. Even Afro-Caribbeans , some of those little islands, some with a French connection, some with Irish connection, I have watched some doing the Irish jigs, they are just purely of African descent. But there were lots of Irish people there and they integrated. Barbados had lots of Irish but most Barbadians are mixed up in many respects.

I would have loved to have done a family history. I found out that there was this Agi, it’s Ghanian or Gambian sort of name and she would go back like five generations, she might have been the start. She probably ended up in Guyana as a slave but don’t know if she co-habited or if she was married but she took a Dutchman, that’s where I got my name from and they produced children and I have seen the documentation whereby the Dutch fathers applied for them to be made free men of the European ancestry. That’s come down through how many generations but then my father complicated it by marrying my grandmother whose father came from China and mother from Barbados and the Red Indian. So you see on mother’s side there is Dutch, French, a bit of English, Indian, you know. Now what do you make of all of that. It is great but where do I start to look for my roots. We all look different. Some like you, some like, some look, like me. It is just fascinating. I grew up in a normal family set up, I had a very happy childhood but as get older life changes. My father from what my mother said, was very strong, well-built person, very active, academic, loved cricket, weight lifting, loved most sport, music, mostly classical that was opera, his great love. In his early 30’s he became a founder member of the Metropolitan Opera Guild, because of his love of music, there was music everywhere. My inheritance, the cabinet and another in the other room is a collection that he started in 1928. I never played an instrument which is one of my biggest regrets because as I get older I begin to realise that If I was able to express myself through my music it might get rid of a lot of stress and whatever. I used to love to sing but then I realised that I didn’t have ... I did sing at school and I was in the choir until I left school. In the last few years because of things that have happened to me that have nearly saddened me, my own personal lifestyle and things that have happened with my own family and so on, I don’t play. I don’t listen to the music as often. I’ve only now started to do it again although it is consoling and soothing; it brings back too many memories. I was active at school. I rode to and from school. I played games, liked table tennis up to the time I left home in my early 20s. The diet there is quite healthy and your main meal is lunchtime, so you aren’t going to bed on a full stomach.

Root vegetables, lots of greens, beef, fish, not a great deal of pork, mostly beef and fish. We had a lot of fruit. I ate a lot plantain, there is a green one cooked in a certain way which is very good for you. When it is fried, when ripe, that is when it can create problems but in those days we never had any problems. Cassava which i loved but because I developed sinus problems at an early age they felt the starch wasn’t good for sinuses. Yams, tania, that was one of my favourites, eddoes they used to make soup because it’s good for your blood, whatever is in it the content of it, you either cooked it or boiled it even children. I remember my brother four years younger, when he was born, watch everything being done for him, they would crush the potatoes or the eddoes, put a little milk, butter and that was in place of all these supermarket foods. Very good diet, then there was plantain flour, used to make porridge which is very nourishing and pablum, a sort of porridge, a famous Cow and Gate milk which we used in place of fresh milk at home. We had fresh milk delivered every morning by Indian farmers but we suspect it was watered down. As we got older we used evaporated milk which is good but got lots of sugar but we were not aware of the problems. Because we were so active, and it’s hot climate so you’re sweating , getting rid of a lot of impurities, you go home from school or work and relax for a short while and then you play games or visit a friend, you are walking and not going by car. Evenings are nice, you are out again so whatever is happening to you, you were probably not aware or you were able to cope with the situation. My mother tells me that my father must have been in his late 30s, he developed what we know in the Caribbean as ‘a touch of sugar’. I know two people from the Caribbean and these are highly intelligent professional people , well I think can’t you work this one out for yourself, if somebody told you have a touch of sugar , you either prone to diabetes or you actually got it.

My father may have had it. Well my mother said that he had sort of scare, the doctors put him on a diet of beer and something else after about a year he was back to normal so he went back to eating and drinking normally. As he got older, he was less active and teaching; he was always teaching and writing a book which I’ve got there. He was getting less exercise and of course lots of stresses and strains. He had a private school but in the end he gave up, you can’t bring up a family. So it broke his heart but enjoyed …teaching at the age of 72. He retired four to five times and they call him back to teach at Queens. Queens is run like an English public school, prepared them for professional type careers and whatever else. I think he went through a lot of trauma, because of having to close his own school and do other things, maybe that’s what brought on his symptoms of diabetes, if they were symptoms of diabetes. When I was diagnosed and we were trying to find out about it, nobody in y nuclear family, had diabetes. Now my cousins in California, two of my father’s brother’s children are diabetic. His first cousin, died recently became diabetic in the later years and her son is diabetic and he is now in his early 70s as well, so it seems to have come from my father’s side of the family. I suspect either the Chinese or Afro-Caribbean. Amerindian link too. This high incidence amongst the Amerindians who have now relocated to Georgetown and the coastal areas as against those living in the interior because the ones in the interior, their lifestyle would suggest that they are less prone to diabetes. Well they are still living as they did before but there is a big influx now in Georgetown, has been for years and they all want Western lifestyle and Western food and the Western way of living. So if you can drive why walk.

I was there with the first wave of rioting that was in the 60s, early 62 when the constitution was suspended and Dr Jagan, he was the worst thing. Years later you find out that the CIA was behind it and so on. When you are living through it I couldn’t believe some of my fellow Guyanese could behave the way they did and as a young person I was so disillusioned. I said to my father as soon as this dies down I am off. I said I’ll go up to London because you could. I came here and my sister and we are thinking we’ll stay four or five years till things settle down in Guyana. Then its five years, 10 years, 15 years and it’s 20. I thought ‘God, we aren’t going to get back, we haven’t put down roots because you’re like a schizophrenic, half of you is enjoying life here and exploring new avenues and the other half is thinking, no my family are back there, I want to get back home.

There are stressful moments wherever you are. When my father died in 1979 he was here on holiday with my mother. We had just lost a great uncle, died a few days after they left in April. That was sudden, a bit of a shock and as I said I suspected he must have been prone to or had diabetes and it wasn’t picked up because he kept passing out on a number of occasions. They suspected a heart condition, a knock on effect so he came here and finished his book in Creolese. He just had a massive heart attack and died. My mother then had to be sorted out that took nearly two years for the Home Office to agree to let her stay. She couldn’t go back home to sort out her affairs because if she had gone, she would not have been able to come back. My brother was working mostly by the Brazilian border so he couldn’t look after her. It was nearly two years of hell, trying …The Immigrants Advisory service, they got involved and was like a proper court situation where you have to justify and explain how much you work for, myself, my sister, what kind of home we lived in, could we afford to look after my mother financially. Then you go into court, she goes in ahead of me alone, and ask her questions, then I went in subsequently and if my answers did not dovetail with hers, we’d be in trouble. Then an MP got involved and helped us as well. They said this case should have been sorted out in a couple of months, should never have got to this stage. In the middle of this my little niece got chickenpox and passed it on to me.

Now I read somewhere that that virus stays in your body for awhile and can trigger off a diabetic condition. I don’t know if it’s only chickenpox type of virus, but I suppose the onslaught to your immune system plus I had just had major surgery, I’d had so many different types of medication plus the stress and shock of your father, immediately you cope but the shock registers some little while down the line. So it is a whole host of things you can put together that perhaps contributed. All these different measures to diabetes , I think I was always prone to it when I look back now since I was young I used to get heavy-headed and my skin, these hives what we call ‘mad blood’. As a child I used to think I am I going to go mad? You suddenly start this inflammation, I get it even now if I eat anything and it is like bumps, they irritate you and itch. I get it at the side of my mouth now and I don’t know what I may have eaten but something triggers it off. Yes itching and I know sugar is definitely … I have had that since I was a child.

I come from a line of strong personalities and the women in both families have been very very strong, strong minded even strong willed but determined to see things through and that was the way my parents brought me up as well. My father was a very strong personality and between him and the nuns they instilled so much in you and I have my Catholicism behind me as well that keeps me going. I look around and think they always planned they life and it always seem to happen the way they expected it to so why can’t yours go that way? I don’t believe in Karma and I think the lessons that I have to learn you take it on board and you deal with it but that doesn’t mean it is easy.

The last ten and certainly the last four and half were maybe some of the worst because I am here on my own now. We were myself and my… my father never believed in us being on our own when we came in 62 so he negotiated with my aunt to move in with us, he wasn’t going to leave us two. We were in our early 20s. Your father in particular is so very over-protective that in a way he wanted to orchestrate every aspect of your life to make sure ... maybe he thought that by doing that he’d make life more comfortable for you. It was difficult for him to accept that you’re going to make your own mistakes and that you are no longer under his jurisdiction. If I stayed I would be living with my parents, you don’t go and get a flat on your own if you are not married. My aunt was great she died at 94, worked until 70 at Imperial College, physically very strong mentally.

Suddenly we are here, everybody, my friends said you have got made with your aunt she does the cooking and all the rest. We had our little jobs around the house, contributed to the household and in latter years would take her and my mother on holiday because we were so close. We always thought that Sonja and I would be looking after these two older ladies. Then when they left we will do the things that we always wanted to do for ourselves.

The next thing I know she’s got cancer and she died in 2004, exactly four months later my aunt died she had cancer as well and we didn’t know. While I was up and down to the Mars, I knew all the best hospitals in South London because from 1994 when my sister was first diagnosed, it was constant but she was such a strong person and single- minded. She tackled her cancer in such a way that some of her close friends didn’t know she had it. I had to go along with the way she wanted to play it. So much so that she convinced me that she was going to recover. She recovered initially but then it came back with a vengeance. She had a very horrific death, very horrific and my mother who was beginning to show signs of dementia had to live with that so trying to keep an eye on her and all that time, my aunt was riddled with pancreatic cancer. She knew she had all sorts of symptoms but nobody was going to bother to investigate at that age. So when they did find out she was only given three months or so exactly four months after my sister, she died. Then my mother died a year ago last February with dementia and I ended up looking after her.

Nobody said ‘sit down’ and said look these are symptoms, these are the classical behavioural problems you might encounter, this is how you deal. I learned as with the diabetes as I went along and that is what makes me angry and very disillusioned with the whole thing and being human i got upset with her and I didn’t realise she had atrial fibrillation and the consultant who was dealing with her dementia in the last couple of years kept asking the GP to investigate because it wasn’t her field. Something was wrong, she’d just suddenly fall, near black out. I even called him one day but he said to the receptionist to tell me to ring the emergency services, they’ll come and lift her off the floor. I said that‘s not the main reason I can get help. He should have looked into the atrial fibrillation because that’s what finished her off in the end and made the dementia….every time she had an attack which was quite frequently in the last couple of years, it triggered off the dementia, it was a further stage in the loss of brain power.