Miriam - Interview 5

Age at interview: 47

Brief Outline:

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.

Background:

Miriam is a kindergarten teacher and married with five children. Ethnic background/nationality: Orthodox Jewish

More about me...

 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 for Tay Sachs anonymously.

My own personal experience is that my brother went to a Tay Sachs screening when he was a teenager and it came out that he was a Tay Sachs carrier which was a big surprise because my family are very intermarried. I mean my grandparents on one side are first cousins. So they, my mother’s parents are first cousins which is obviously very close relatives and my father’s side, the family is extremely has married into the same family for two or three generations. So it’s amazing that we have no history… I know all about the family, there’s no history of a baby dying. So we had always assumed that we didn’t have Tay Sachs because, just presumed that there was no history of it. Anyway after my brother was tested I also went to be tested and I discovered I was also a carrier. And at this stage it was well before, I don’t, I think it was while I was still at school so it was just a theoretical thing that I knew about. 

  

However what was interesting was that I did actually meet three young men who I quite liked who were all carriers. So that was for me, quite, sort of depressing and most of them and links going back to Vilna and I’ve got no reason to, I don’t know, but it seems to me that that’s an indication that Tay Sachs because we’re also from the outskirts of Vilna and my presumption is that it’s from my father’s side.

 

My father and mother have never got tested because they’re past the age. And on my father’s side my close cousins have all married out. So it’s not very, it’s not very important to them and the brother who is a carrier is, like me, resembles that side of the family, which I don’t think is proof of anything but he does. And, and so I obviously intend to get my children tested for Tay Sachs because it could very well be that some of them are carriers. But as I say, it’s a family which is intermarried, well intermarried into another family. I presume the other family then are not carriers, that must have been what happened, and therefore we’ve not had any cases of it. So I’ve never seen a Tay Sachs baby thank goodness. And I’ve no history of it in my family in, in the form of babies dying young. So that’s my story.

 

Okay. So have you got just the one brother?

 

I have, I have two, I am one of four and all four of us got tested after my brother [name] had been tested and was a carrier, and he and I, two of us out of the four are carriers. So, and then I said to all my other cousins on every side, the ones who were intending to marry Jewish people, they should be tested. And on my mother’s side nobody’s a Tay Sachs carrier so I presume it’s on my father’s side, but I don’t know. Yes. And I don’t know whether there is a proven link with Vilna that’s just my presumption which I’ve got no basis for. But…

 

And did you, were you worried at the time you might be a carrier or was it one of those things that you didn’t really think about?

 

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.

So the three men you met, you met them before they were tested or were they tested because you …?

Yes, all three of them I asked to be tested and they all tested positive. It was quite strange really. Yes.

How common is it do you think that people are tested generally within the sort or …?

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.

It helps Miriam to think that being a Tay Sachs carrier does not happen by chance; people are given the strength to deal with it.

In a funny way it is very much a proof of, well I’m, also I’m interested in history so it does make you feel like you’re part of a strand of history and I did read somewhere that Tay Sachs probably was one person somewhere who had aberration or whatever it’s called in their genes and that, that is a very strange feeling, you know, there’s one person that’s passed it on, and it’s like, it’s always interesting that most Jews don’t have red hair and if Jews do have red hair they tend to come from Poland. So somewhere somebody, I don’t know quite why exactly, you can use your imagination, how it happened, but somehow red hair got into the and that’s yes, so historically, I think it does, I think it feel it’s part of my identity. Yes, I think it’s part of my identity that I’m a Tay Sachs carrier. Not even such a terribly negative one in a way. I think it’s, you know, it’s part of what’s been handed on to you on the… you get a whole delivery on the plate when you’re born and that’s part of why… and I think that’s the way other people should think about it as well. I don’t think people should feel… because now we know about it, it doesn’t have to be, they used to say you’re not allowed to, Halachicaly you’re not allowed to marry across a grave… I don’t know how… because, you’re not allowed to marry somebody where you know that the children will be affected so severely that they won’t live a normal life.

 

So if you know, if the person knows they’re a Tay Sachs carrier they are not allowed Halachicaly to marry another Tay Sachs carrier and that’s called they’re not allowed to marry across a grave. So it’s, you know, we have a… the positive side of it is, we try and make a positive out of it. 

 

But apart from that the fact that it’s part of your identity and I assume you must think in the same way with them; if the system is in place that they and partners can be tested it’s just part and parcel of who they are?

 

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, it’s 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.

 

Miriam thinks being part of a community can help to protect people from mental health problems, though secrecy and stigma can sometimes be an issue.

Yes. That’s very interesting actually. Is there any other ways in which you think that health and the Jewish connection as …?

 

Well I’m very interested in mental health which is how originally, I used to work once upon a time as an administrator in mental health and there I think you see very much the positives of the Jewish way of life, which is a lot of people who have what could be and become really very serious mental health problems in the general community. It doesn’t matter, its not, it’s also not exclusively in the frum community. Even in the non frum – just going to synagogue or schul once a week and having a group of people and being a part of a community and seeing the year go by and the changes and everything does help people I think to be part of the community and not show their, for their mental health problems not to flare up in the same way.

 

But we, the whole issue of not, of not proclaiming problems, because we’re a small community comes up in all these areas if a person has a mental health problem or is taking drugs to prevent depression or those sort of issues are sometimes hidden because people don’t want the family to be tainted. But, so that’s a negative, but there’s a positive of being part of the community which is supportive and helpful.

 

Halachically you’re not allowed to marry across a grave… I don’t know how… because, you’re not allowed to marry somebody where you know that the children will be affected so severely that they won’t live a normal life.

 

So if you know, if the person knows they’re a Tay Sachs carrier they are not allowed Halachically to marry another Tay Sachs carrier and that’s called they’re not allowed to marry across a grave. So it’s, you know, we have a… the positive side of it is, we try and make a positive out of it.

Miriam had several Shidduch - arranged marriage introductions ' before meeting her husband.

You said it became more relevant when you became older, when you decided to have Shidduch.

 

Shidduch is when you have an arranged – it’s an arranged marriage but not in the form… it’s different to in other communities and in our, in our community, well there are lots of them, it’s a very varied, obviously lots of different types of people, and what happened to me was I was an older single, older in the sense that I was 26, you know, and I wanted to get married so I, I, to, just arranged through people who introduced men to women. I introduced myself to them, and that is in order to get married. So to say to somebody before I meet I would like them to have a Tay Sachs test is not so strange, because you are meeting on the, presumption that this is a meeting that might lead to getting married. So I did many Shidduch because I was older, and, and I suppose, I don’t know difficult or whatever, and I met my husband through it, that is how I met him eventually. What I did was, eventually, I decided I’d help them administer the scheme… [laughs] didn’t get me very far. I met him through something else, but I thought if I’m administrator at least I can look at the cards and see what I think [laughs].

Miriam found several relevant books on Jewish medical ethics in her local library.

You’ve not had any problem getting information about anything to do with Tay Sachs?

 

No. No. I mean we are not on the internet now.

 

You’re not..?

 

No we’re not on the internet, but then we know who people who are so at worst we can visit their families, or we can use the library, we use the library if we need to, but no I think that information passes down very well and we, our GP is, has got lots of, he’s got some of the doctors are Jewish and they’re very informed on, on Jewish issues. So that, so that we’ve always been able to get, you know, if it’s a health issue then it comes through. They are very well informed on that.

 

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't affect her ability to have children as long as her husband wasn't also a carrier.

Anyway after my brother was tested I also went to be tested and I discovered I was also a carrier. And at this stage it was well before... I don’t... I think it was while I was still at school so it was just a theoretical thing that I knew about.

 

And did you, were you worried at the time you might be a carrier or was it one of those things that you didn’t really think about?

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.