Miriam - Interview 5
Miriam discovered that she carries the gene for Tay Sachs as a teenager. She arranged to marry her husband who does not carry the gene and expects their children will be tested anonymously.
Miriam is a kindergarten teacher and married with five children. Ethnic background/nationality: Orthodox Jewish
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Miriam is a kindergarten teacher and is married with five children. She discovered she carries the Tay Sachs gene as a teenager after her brother tested positively. At the time Miriam thought about it more theoretically than practically. However as she grew older and became more frum (devout) she decided to arrange for possible husbands to be tested for the gene before doing a Shidduch (arranging a potential marriage partner). After three men were tested and carried the gene, Miriam met her husband who was not a carrier and they now have five children. Miriam describes how asking people to be tested in advance of meeting was not a problem within her community and she expects that her children will also be tested anonymously in the future. Miriam feels that carrying the Tay Sachs gene is part of her identity and not necessarily a negative part.
While Miriam has not encountered much stigma herself, she would want her children to be tested...
While Miriam has not encountered much stigma herself, she would want her children to be tested...
It helps Miriam to think that being a Tay Sachs carrier does not happen by chance; people are...
It helps Miriam to think that being a Tay Sachs carrier does not happen by chance; people are...
Miriam thinks being part of a community can help to protect people from mental health problems,...
Miriam thinks being part of a community can help to protect people from mental health problems,...
Yes, yes, yes, I think part of being religious is that you think that things don’t happen by chance. So that in some way, when, whatever you’re given, whatever your circumstances are, you’re not allowed to say ‘oh well that’s not fair’. That, that’s the way it is, and that’s what you were given and you’ll be helped. We also have the idea that you’re never given a problem too great for you to deal with. If you’re given a problem, you’re also given the, the, the tools to deal with it. So in other words if, if you’re faced with a tremendous, a tremendous difficulty then you’ll get the help somehow to get through it in some way or another. And people also think about that with illness as well. For the, you know, for, it seems very hard but if people who have a child who gets cancer or something then the reaction to that is not, you know, what did they do to deserve or, or whatever, or that must be for our sins or something, its somehow they are going to get the strength to deal with it and that gives you a tremendous ability to deal with things, because you do feel that you’re not abandoned when something like that happens, but that it’s somehow part of the plan however hard that is to internalise, and therefore, when, for example when they, recently a year ago, these boys were killed in Jerusalem in a yeshiva, the parents said, I don’t know how they even think it, but they said, “It’s part of the plan that our son should have died young, and we have, you know, we have to come to terms with that,&rd
Miriam had several Shidduch - arranged marriage introductions before meeting her husband. Three...
Miriam had several Shidduch - arranged marriage introductions before meeting her husband. Three...
Well in our particular bit, the boys when they’re at a certain age - I don’t whether its 17 or 18 - it tends to be a mass testing in their institution, so everybody does it. It’s like that’s what happens. And I suppose you could say that our part of the community are perhaps, although we are very frum we’re also a little bit intellectually aware, so there the idea of this is – I, most people in England as far as I know are managing not to have Tay Sachs babies, so it seems to me that most people in England are going through some sort of scheme.
Miriam found several relevant books on Jewish medical ethics in her local library.
Miriam found several relevant books on Jewish medical ethics in her local library.
Also there’s quite a lot of books on Jewish medical ethics, which are, it’s a whole sort of world of its own, and that, so that’s very, you know, there are even baby books for Jewish mothers, and they all talk about the health issues within the frame of… so you can gen up on it if you want to. It’s very available that information. It’s not, it’s not secretive. And there are, you know, we have you can always ring up there’s, any time of the day or night there’s a number you can ring and ask a question to a Rabbi, so you know the modernity has come into this whole area, so that, probably you can do it on the internet as well. I don’t know. But and there’s the surfing Rabbi and the, you know, whatever, so there is a lot of information out, out there. So I think people can inform themselves on health issues from a Jewish point of view. And of course there’s masses and masses of information from the non-Jewish point of view, you know, and general information.
Miriam wasn't worried when she discovered she was a Tay Sachs carrier because she knew it wouldn...
Miriam wasn't worried when she discovered she was a Tay Sachs carrier because she knew it wouldn...
No, I didn’t really think about. Once I discovered I was a carrier, it was still very theoretical and I was just very... and in fact it’s never... as I say it didn’t turn out to be a problem, because within, the people I met in England, there wasn’t a problem with me saying you know, “I’d like you to be tested, because I’m a carrier.” And people, I suppose the people I was meeting, mostly people who are educated enough to know what it meant to be a carrier, that to marry a carrier if you weren’t a carrier was not something of great import... and therefore people didn’t say, “I don’t want to meet you again if you’re a carrier.” I didn’t find that at all. So I found people were willing to be tested.