Jewish identity, rituals and observances

We asked people whether or not they thought being Jewish influenced how they experienced and managed their own or their child’s health condition. Some people were slightly surprised or even taken aback by this question. One man with multiple myeloma responded, ‘I don’t think it’s anything to do with chicken soup!’ A few others were intrigued and said they had not really thought about this before.
However, those who belonged to orthodox communities or strived to be ‘frum’ (adhere to religious laws) in most aspects of their lives had a great deal to say about how their faith and cultural practices had affected how they dealt with the condition and its treatment. They had numerous stories to tell about how Jewish rituals and observances had at times proved challenging to integrate with the demands of looking after their own or their child’s health.

When it became clear they would need to travel to hospital on the Sabbath, Sara and her husband…

Age at interview 48

Gender Female

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Strictly Orthodox Jews will be affiliated to the Synagogues, the Synagogues have Rabbis. They are there to answer the questions relating to religious law. This is a question relating to religious law. it’s not something you would know because you don’t always go to hospital on a Friday. But if you do, then you need to know what sort of rules apply. And it wasn’t just simple, you’re not allowed to carry outside, it was very complicated. But basically here for example, on the Sabbath I don’t carry outside. I can’t carry a handbag or a handkerchief or whatever. You don’t carry and you don’t drive a car. And then in the hospital, the hospital would be considered outside, the public domain, so I couldn’t actually carry my bags down from the bedroom to the taxi. There are lots of questions involved. We had to ask someone else to carry the bags down. It sounds very silly to you, but for us that is a law.

No I understand that.

Yes. And we had to prepare the money beforehand to pay the taxi driver and the nurse, the porter that took us down, handed the money to the driver before. There were a lot of questions involved; it wasn’t just a simple question.

Has your religion helped you deal with your experiences with your son would you say?

I would hope so. it’s supposed to help us with everything, so es. I think also the fact that you have a Rabbi to turn to and you can talk to somebody. That’s why we took our son there, to discuss, anyone’s going to think, why me? Why do I have to suffer? And there’s certain commandments, laws that we keep that relate to food. So for example, on Passover it’s not just certain things we can’t eat, but certain things we are required to eat, and he couldn’t that first year, he couldn’t eat. So he was very upset, particularly as it was his bar mitzvah. He was bar mitzvahed that year. So he was officially, legally, shall we say, required to keep these laws but he couldn’t because he wasn’t well.

So having that Rabbi explain to him, No actually if you aren’t well and the doctor says you’ve got to not eat this, or not eat that, then that is what you’re required to do. You’re not required to keep the law We could tell him that, we knew that, but he is not going to listen to us, but he was able to listen to the Rabbi. And he had a lot of support from one of his teaching Rabbis in school who was very, very kind. He had a nephew with Crohn’s.

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The hospital provided accommodation and a kosher food cabinet. Rebecca and Aaron have started…

Age at interview 34

Gender Male

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You said that the hospital was very good with your religious requirements or observances. Did you ask them, or did they just act or

Rebecca’ The first time they just acted.

Aaron’ Well I knew that I needed, I knew, I mean it was a Friday afternoon and I didn’t know what, I mean there was enough worry going on in any case, and I didn’t know where I was going to be able to sleep or anything. So as soon as we got to the ward I said, What, what is there Because as Rebecca said, it was the date, you know, it was suddenly, just those two days when it was all so last minute anyway, we didn’t do anything in advance. And we didn’t know if the timescales and things were going to happen. She was transferred after four hours, but it could have been a day or, or you know, anything. So yes, I said like, Where do I go to find out about accommodation And they do, at [hospital name] they actually have a couple of rooms that are specifically sort of set aside rather than, not just for Jewish people, but, you know, the facilities are there.

Rebecca’ But they have
Aaron’ And one of those happened to be available, so they gave me the key to that. And that was, which was great. That was just a massive weight of my mind for those couple of days I didn’t thinkyou know, I had this, and it was also good because it was in another building, sort of across the road, and I suppose from a personal point of view it was quite nice just to have that space between me and the ward and it was somewhere private I could go on my own as well.

Rebecca’ But they weremost of the rooms, most of the parent rooms in [hospital name] involve electronic keys or electronic doors or all sorts of things that we can’t do on the Sabbath, but these particular ones are accessed without an electric door. They are accessed to using a key and there’s no, there’s no electronic that we have to go through to get to that room, and that’s one of the things. But there’s also a, what they call the Shabbat room at [hospital name], which is basically a cupboard.

Aaron’ Which is run by a charity isn’t it?

Rebecca’ oh yes.

Aaron’ The hospital have provided the space and it is just a small cupboard, but there are, you know, and some food and some other sort of things inside it that are useful for us, a hot plate for heating some food and things like that.

Rebecca’ And a kettle.

Aaron’ I mean that’s organised by a Jewish charity. But that’s good, you know, it’s great. We didn’t know that was there at all did we? And they told me about that, that first Friday when I was there and gave me the keys to that. But I didn’t use it that first weekend becausebut subsequently we’ve used it. And the other thing is, they always provide, the hospital will always provide accommodation for one parent, but not normally for two. But when she’s been there over the weekends, I mean there have been sort of two weekend admissions haven’t there for the IV’s? it’s not really convenient for us to be, well I mean if we had to we would stay, one of us would stay at home, and maybe walk in on the Saturday or something.

Rebecca’ Or use a hotel but, well it’s expensive in central London.

Aaron’ Yes, they have provided us with a room as well.

So there is a Shabat room. And can you get kosher food in the hospital? Have they got thi

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For example, the liquid diet (‘milk’) occasionally prescribed for people with Crohn’s disease would not be considered ‘kosher’, and some foods supposed to be eaten during festivals such as Passover might cause or worsen a flare-up of the disease. Similarly, religious laws not to travel, carry objects or use electronics during the Sabbath could cause considerable complications when having to apply treatments or attend hospital appointments. Observant Jews talked about how they had found imaginative solutions to these challenges. Several of them also talked very positively about how their religious needs had been met with respect and support by hospital staff and others outside the Jewish community.
Several people talked about Jewish festivals and Jewish diet in relation to their health. One mother described how several important celebrations and family events coincided with her son being diagnosed with Crohn’s disease, meaning he was unable to eat any of the traditional dishes.

Sara’s son’s diagnosis came at the worst possible time. Amidst all the family celebrations, it…

Age at interview 48

Gender Female

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It had been such a traumatic few weeks. At least we had a diagnosis and there was a treatment. And, at the time, the doctor was very confident that you do the treatment then he’d be fine. Now it does work sometimes like that. But it didn’t for him. So I have to say that, at that time, that timing when he was diagnosed, there was so many things happening here at home as well, we just, I don’t know how I survived it to be honest.

I had one daughter, two daughters living with me, it alternated both were expecting babies at that month. We were in hospital that week and one was born that week and then since you’re talking of looking at Jewish community, so both babies were boys that means on the Friday night we make a celebration to welcome the baby boy.

On the Thursday my daughter gave birth and I was in, helping her as her labour coach and at home with the elder child. Friday night we made the celebration and we had the circumcision which is usually eight days later. Three weeks after the first baby was born my other daughter gave birth to her first baby boy, again another celebration, another circumcision. And, because it was her first baby boy there’s another celebration that we have if it’s the first baby boy, the first child in the family is a boy then it’s a different celebration a month after the birth.

So we had all those and in addition, [laughs] which I can’t really believe that all this went on now, when I talk about it. My third daughter got engaged in that week, which means another celebration for the engagement party and that sort of thing. At the same time it was our silver wedding anniversary. So all these things were happening and this poor child couldn’t eat at any of these celebrations. That was horrendous.

And it was New Year and Sukkot, I don’t know if you know about that but you have two days at New Year and then Yom Kippur, I don’t know if you know about that, the fast day, and then after that there’s a week of festival, the Feast of Tabernacles, I don’t know if you recognise that. So it was the worst timing possible for this poor child to be diagnosed and have this chronic disease and for him psychologically to accept that he has a chronic disease. That was hard.

Is there any, there’s no space – I mean this could be a really clumsy question so feel free to tell me if it is – if he was that ill that he had to have the milk only diet, is there any space within your community to sort of say, well we can’t do the celebration at the moment?

No. There wouldn’t really have been. Well circumcisions have to be done. So no, no, there wouldn’t, it wouldn’t have been sensible to do it later on. Anyway, it would not have been fair on the older children.

Yes.

So we had to talk to him, and he understood that, but it was hard.

And did that have an impact on him, I mean just not the not being able to eat, but was there any implications for his religious, for drinking the milk

We had to ask what the position was on that. I think it was accepted that it was okay. But even if it hadn’t been if that was the only treatment, medical treatment, the implications would be whether we could use our own dishes for it or separate dishes. We did use separate to dishes for preparing it, this stuff, horrible, gungy stuff [laughs].

Can you explain what you mean by if you could use your dishes or separate dishes?

In kosher kitchens you have milk dishes, and meat dishes, and they&rs

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A few people with Crohn’s disease had been told by health professionals that the high fat content of a traditional Jewish diet might be one reason why the condition is particularly common among Jewish people (see Food and diet). One man with Crohn’s had a different idea about the connection – he felt that Crohn’s was related to high levels of anxiety and therefore likely to be more common among Jewish people.

Lindas not convinced that the Jewish diet is a factor in Crohns disease.

Age at interview 50

Gender Female

Age at diagnosis 15

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Can we talk about your being Jewish and whether that’s had an impact on your health in any way, or any significance would you say?

I think, I don’t think it’s had a major impact, but I’m very, I identify very strongly as being Jewish. I always have done, that was my upbringing. And looking back now I think I can see that I always had the attitude that having Crohn’s, there’s a lot worse things that could happen then having Crohn’s Disease, especially for me, because although I’ve had periods of illness, there are a lot worse things, and I think that’s tied up with my Jewish history and Jewish culture, cultural background. Illness is something that I was aware of in families and so on. I was aware of Jewish and non Jewish children who were disabled or something like that. So I think I always had it in context, no in proportion and I think that’s got something to do with my heritage. But as I said to you before, there’s nobody else in the family that’s had it, don’t know that many people who have it. The people I do know that have Crohn’s Disease are Jewish, but that’s because I know more Jewish people than non Jewish people probably. Or I certainly know more Jewish people well enough to have that conversation. Yes. I often wonder, you know, about the prevalence of it in the Jewish community because that piece of information did come my way quite early on in being, in having Crohn’s Disease but I don’t know. I mean if it’s connected with food that doesn’t really work because we’ve all had such varied diets and Crohn’s Disease is still being diagnosed probably in, with more frequency now, than it was when I first had it, and our diets have become even more diverse in that time. And if it’s to do with stress, then, well maybe, but then why isn’t it as prevalent in communities that have high stress levels or – I mean we joke about it, but obviously there are, you know, groups of people living under certain conditions or who have it in their history, their background where guilt and stress are kind of part of the psyche, part of the makeup. So I don’t know. If it is stress related then that makes more sense to me, and perhaps that is part of my Jewishness and the illness. But I definitely think the way of dealing with it is part of my Jewishness.

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Several people had considered the connection between their Jewish background and their condition mainly in terms of genetics – they were aware that their condition was particularly common amongst Ashkenazi Jews and that there was a genetic cause or component to it (see Genetics and Inheritance 1 and 2). Others had only learned about this connection at diagnosis and were very surprised when they were told that theirs was ‘a Jewish condition’. Many people we spoke to made reference to the cultural practice of intermarriage as a possible cause for the high prevalence of genetically-based health conditions amongst the Jewish population.

Being Jewish is an important part of Rosalyndes identity but she doesnt think it has had a…

Age at interview 70

Gender Female

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Is there anything you found out in particular that’s been helpful?

I don’t know that its been helpful but I was told immediately that it was an Ashkenazi disease, and Ashkenazi people were more, more prone to get it. Yes, well this young woman I mentioned she told me about eating rice rather than potatoes and that’s made a big difference of course. It was very useful. And I was, another person I know who actually teaches exercise told me that exercise would be good for it, even though I was tired and that’s made a difference too. Those sorts of things but various things on the diet, I’m sure people have come across, like cutting out wheat, like cutting out dairy food.

And when you were told quite early on that it was an Ashkenazi it was related to Ashkenazi Jews how, what did you think when you heard that?

I don’t think I thought anything. I think well that’s interesting. No, I don’t I don’t think I did. No, it didn’t bother me that much. There’s so many things aren’t there? I believe celiac disease is an Ashkenazi disease, isn’t it and there are so many things that you can get that come with your ethnic origin or you family, so no, it really didn’t bother me.

Is there any way in which your Jewish background has influenced your health do you think or your health behaviour?

Well I suppose I was neurotic as most Jews, [laughs] I don’t know if in your research, is migraine a Jewish thing?

It hasn’t cropped up actually.

It hasn’t cropped up because I suffered in the past with migraine, very, very badly. I’ve grown out of it quite a bit. My father suffered with it, my son suffers with it. I know lots of Christian people suffer badly with migraine. So I’ve never thought of that as a Jewish thing, I just wondered. What was your question again?

Are there any ways in which being Jewish has influenced your health do you think? Or your health behaviour?

No I think it’s influenced my behaviour enormously, enormously. I once heard on the radio somebody called Klaus Moser. He was head of the opera and he was also the head of Wadham College asked what had influenced his life most and he said, Being Jewish and the holocaust. And I said, I could identify with that, because I grew up in the shadow of the knowledge of the holocaust so it has affected me enormously and over the years I always wanted to be involved in holocaust education, which I am now. And being Jewish, I have often said you can stop being English and become French or Australian or whatever, but you can’t stop being Jewish. And even people who convert I don’t think they actually stop being Jewish, they add Islam or Christianity or whatever to their Jewishness. So But as far as health issues I don’t think it has affected me in particular.

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Ruth and Colin learned from the doctors that their father’s condition – Factor XI deficiency ‘ is…

Age at interview 77

Gender Female

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Helen’ We did have a communication from them eventually, while dad was still alive giving the results of all this.

Ruth’ Oh really.

Helen’ Yes, and saying that not only did it affect Ashkenazi Jews, but also Japanese.

Colin’ That’s peculiar, yes, well

Helen’ Yes, it’s a strange mixture.

Colin’ Well it is, and it isn’t, there is a common link and that’s the assumption that a quirk of this type generally starts because of a lot of intermarriage amongst families. Ashkenazi Jews I am sure you would know, because you have obviously done a little research into this, like our family, the majority come from Eastern Europe and they were in sort of small villages and cousins married cousins a lot. The same I gather happened in rural Japanese communities, so it may not actually be as impossible a link as you think.

Helen’ What was interesting when we went to the [hospital] and again I can’t remember the name of the, of the consultant we saw. A lady doctor. She was very, very nice, and she asked Dad why, this is only prevalent among Ashkenazi Jews, who are from Eastern Europe and not Sephardic Jews who tend to come from Israel and then this was the same thing that Dad was explaining to her about this

Ruth’ No, it was about intermarriage.

Helen’ sort of intermarriage.

Colin’ Yes.

Ruth’ The other thing that I don’t know whether it was at all relevant, is that having a blood group of B

Helen’ He was AB.

Colin’ Dad was AB.

Ruth’ He was AB.

Helen’ Yes.

Ruth’ But we’re both B. But the B side of it is prevalent among Ashkenazi Jews and Africans I believe.

Helen’ Oh right.

Ruth’ And very few other people are B.

Helen’ [Laughs] Yes.

Ruth’ So we can, kind of if you like prove that Dad had real Ashkenazi blood.

Helen’ Yes, yes, yes.

What about the link with the Jewish community then? Well how did you experience that, sort of finding out that he had this condition and that it was linked to being an Ashkenazi Jew?

Ruth’ We didn’t. The doctors must have told him, when he was diagnosed.

Colin’ Yes. They also told me that at [hospital] when I got checked out that it was something that was The only incidences they had ever come across were in Ashkenazi Jews, because they asked me, sort of obviously politely and discretely you know, is your background Ashkenazi Jewish? Which I’ve never, ever denied, so yes, it is known amongst the fraternity that know about Factor XI deficiency.

Ruth’ I suppose that’s a big difference that you went to [hospital]

Colin’ Yes.

Ruth’ and there’s a fairly big Jewish community nearby.

Colin’ Yes. In fact Factor XI deficiency is known in some circles as Jewish haemophilia. It does have many characteristics in common with haemophilia.

What did the post-mortem say?

Ruth’ The authorities agreed not to ho

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Several people had sought Rabbinic support, both for practical guidance and also for counselling to help them come to terms with their own or their child’s condition on a spiritual level (see Support and support groups). Most of them had very positive experiences, though one woman talked about how she felt let down by her synagogue after she went through a divorce.

Health is important in Judaism. The Rabbis Rebecca and Aaron consulted have been very helpful in…

Age at interview 34

Gender Male

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Rebecca’ I don’t, I mean I think cystic fibrosis is possibly unusual, in that there’s very little that’s specifically Jewish related. There’s just no reason for it to affect you religiously, because if you’re that way inclined they’re always ways round it. Judaism, has never been about restriction, it’s about positives. Health is really important, and if that’s the best way to treat it, then that’s the best way to treat it. And if that’s not quite in line with what you would normally do on the Sabbath for example then the Rabbi will find some way of finding a way of doing it, if that’s what you need to do to keep their health, especially with children. Although we’ve had amusing responses.

When you ask advice do you actually go and physically ask him or do you phone him or..?

Rebecca’ When I was pregnant I emailed [laughs]. You do email these days. It depends on the question and the circumstance.

Aaron’ Hm.

Rebecca’ Sometimes we’ll phone, sometimes we’ll go in person.

So does he have office hours? I mean are there particular times when you can contact him?

Aaron’ Well yes, and no I suppose, in an emergency, you can get him or whatever and just ask him the question and And phone him at a reasonable hour, [laughs].

Rebecca’ I reckonI’m sure there’s a website Ask the Rabbi.

Aaron’ Probably.

Rebecca’ But I mean we’ve got several Rabbis locally.

You can ask Rabbi, you don’t need to ask your Rabbi?

Rebecca’ You can ask who you want. Only, I learnt quite, when I was at university you can ask more than one Rabbi but you ought to tell the second or subsequent Rabbi that you’ve already asked the first one.

Aaron’ [laughs]

Get a second opinion.

Rebecca’ You can get a second opinion. The, the rule actually is that you can ask the question again. You can ask it in a different way for example, as long as you tell the second Rabbi that you have already asked the question. You shouldn’t put them in the situation where they’re disagreeing. If they, you know, and they may wish to discuss it with those Rabbis what the question was. But, it’s like any lawyer I think, you have to kind of think of it in those terms. You know, kind of ask a lawyer a question it is a matter of opinion. And if the first Rabbi isn’t in line with what you think is right, then it might be that you need to ask somebody else.

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Harriet belongs to a Liberal Synagogue and felt that her pastoral needs were very well-supported…

Age at interview 55

Gender Female

Age at diagnosis 20

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I mean you said as well that you had Rabbinic support and movement support. Could you explain that?

I’ll talk about the movement. Liberal Judaism as it is now, was then called Union of Liberal and Progressive Synagogues. As the Chair of a community I was a congregant that was known to them and because I was the Chair of a community I had flowers and letters from the then head of the movement. It was a pastoral support thing and I thought that was very nice.

In 2004 I was the interim Operations Director for the movement for eighteen months and we didn’t send cards and flowers to just any member, they had to have either a role within the movement or a very important role within their community such as being the Chair. So in that sense it was nice to know that I was cared about by this big organisation.

As for Rabbinic support, I was very close with our Rabbi because I was active in the synagogue anyway. Every synagogue Rabbi has to provide pastoral care for congregants. So if someone is very sick, particularly with a life threatening illness, it would be only appropriate for a Rabbi to come and visit you in hospital, come to your home, phone you to see how you’re doing and so on. I’ve been very blessed because we had a wonderful Rabbi when I first took over, who retired very shortly after I became the Chair, [name] who came over to England with the Kinder Transport, a fabulous man, the warmest, kindest gentleman. And he always was very concerned about me, and would call and ask How are you and send me cards or whatever. We took on a student Rabbi when he retired, named Rabbi [name] who is a very good friend of mine as well as our Rabbi and I just found that I could have very helpful philosophical discussions with her about life and death and talk about what was happening for me in a very straightforward way, because she was just that kind of person. It was part of her role as a Rabbi, but also we were friends so it was doubly beneficial.

When Rabbi [name] left we got another Rabbi, Rabbi [name] who again I enjoyed and got a lot from my relationship with her, but I wasn’t sick during her time, and now we have a Rabbi named Rabbi [name], who again is a very good pastoral supporter and at least once every two weeks, if not more often, I get a call from [Rabbi] to see how I’m doing, to see if there’s anything I need, to see how [name] my husband is doing. I have moved physically quite far out from the heart of the community, it’s a good 25 miles to get there. There are only a few of us out this way so I don’t expect her to come, because it’s too much really, and she’s only part time.

But what I think is great is that she’s in constant touch and if I asked her to, she would come. She would be here in a heartbeat and certainly she was at the hospital immediately after my surgery and was always asking did I need anything?’ making sure that my pastoral needs as a Jew, as well as a person, were being addressed. So that’s what I mean by Rabbinic support.

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Members of Rosalyndes synagogue did her Pesach shopping when she came out of hospital.

Age at interview 70

Gender Female

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Well I, we’re members of [synagogue]. it’s a small community as communities go, and they are so supportive, they are wonderful. I mean everybody, I can’t tell you, I think prayers are still being said for me on a Saturday morning and everybody, I must have had about fifty get well cards. And, and I came out of hospital just before Pesach and people that I’m not even friendly with wanted to do my Pesach shopping so yes, I got enormous support from the Jewish community. And I would hope that if people are a member of any sort of group if they have this sort of thing they would get support from, whether it’s a church group or something else. It doesn’t have to be a religious group. But yes, I got enormous support and from my rabbi who told me about you [laughs].

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Karen was excluded from her Synagogue when she got divorced. She has rejoined a different…

Age at interview 48

Gender Female

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And have you got support from the Jewish Community? The Synagogue?

I wasn’t actually a member of the Synagogue. I When I got divorced I was treated so badly by my last, by the Synagogue that I was a member of with my husband. The minute he informed them we were getting divorced, they basically kicked me out. Kicked me off the membership and then asked me to do security at the Hebrew classes that my kids were going to. So I told them that I’m not the member, ask their father. But I was actually very put out by it. And I decided not to become a member of the Synagogue. But when I got sick I thought oh I don’t want the girls to have major problems should I die with burial and because there’s all these laws andSo I became a member of [synagogue] and they email me, and but, I’m not that way inclined. I’m notI mean I would never have ham or bacon in the house or anything like that, but I’m not a realI’m more a Zionist then Jewish if you know what I mean. I love Israel, and love the, very proud to be Jewish and all that, but I don’t go around, you know, looking for a Rabbi to talk to, [laughs] even though there was one when we went to Poland. He was fantastic, brilliant to listen to, but he’s one ofBut [Rabbi] he’s one on his own. He’s not your average normal run of the mill rabbi. So, yes No, not for me [laughs]. Thanks.

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Another important aspect of Jewish culture and identity mentioned by several people as positive influences on their health and well-being were strong family ties and good community support (see Support and support groups). Even a couple of people who were not particularly active or engaged in their community described how they had received emotional support and practical acts of kindness from other community members after being diagnosed or returning home from hospital.

Harriet thinks being very close to her sisters is part of the Jewish family experience. After her…

Age at interview 55

Gender Female

Age at diagnosis 20

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For example, when my sister and I were in the hospital, apart from her attending to my needs, we’d just go nuts, and we’d laugh and decorated my entire room by anthropomorphising every item that existed. So we had a Mr Potty- a bedpan with a face drawn onto the bottom, Mr Television and Mr Lamp. I mean everything was decorated and became something and we were just hysterical with it. But it all started with my foot because I had to wrap it up in scarves because it felt so cold as all the nerves were going crazy – your nerves go crazy after surgery like that. We dressed it up in a sweatshirt and gave it hands from rubber medical gloves, eyes from wrapped, round, chocolate-covered mints and my foot became Mr Gork. He had a Russian accent like my grandmother and it was hysterical. We just got silly.

I think laughter is a tremendous cure and it certainly kept my spirits up. So, is having sisters like I have. I think that is part of the Jewish experience, but I don’t think it’s uniquely Jewish. I have sisters who will be there for you. I mean who would come and live with you for two weeks in a hospital? And she’s not done that once, she’s done that twice now.

And the other sister, who had much younger children, would have done that, but couldn’t get away, but certainly came and stayed with me, for weeks at a time, while I convalesced. I thought it was pretty amazing. My husband was in the hospital every day too. I just think family and the family support was incredibly important. I also was the Chair of my synagogue at the time, and had agreed to take that role on just before I discovered that I had the cancer returning but thought, well why not? Obviously if I survived this I should be able to handle that. I had tremendous support from my community, where people would cook for me, and come and clean my house, and one woman came every day and gave me a foot massage. I never felt that I was ever alone, even without having family living in this country. I think I was very lucky to have such a caring community around me.

Now I know that other faith groups will do that sort of thing, so I don’t want to say that it was uniquely Jewish, but I feel it was very much a Jewish experience for me. There was also Rabbinic support and Movement support. Because I was a Chair I was known to the umbrella organisation and they were very kind and supportive as well. So there’s a lot to be said about the power of the Jewish community and what it can do to help people in their time of need. I’m very grateful for that.

You talk about the support of your sisters as being sort of like a Jewish experience. Can you explain to me a bit more why you think that’s related to being Jewish?

I have a lot of friends who are Jewish and a lot who aren’t. I hesitate to describe things as uniquely Jewish because that’s unfair, but I think there is a very strong element in Jewish culture of strong family ties, that family comes first and is more important than anything. Your Jewish community is second and then the rest of the world follows that. My sisters and I are extremely close, I think even more than most Jewish families that I know of, and my brothers for me are the same but because they’re brothers it’s slightly different. The first time I was ill, my brothers had much younger families so it was harder for them to get away to support me.

In 1999 it was just my two sisters who came in person. But in 2007 one of my two brothers whos a lawyer came over and he wanted to make sure that everything was all right. He wanted to know what the surgeon knew. He wanted to see that the ducks were all in a row. He came for three or four days before

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Miriam thinks being part of a community can help to protect people from mental health problems,…

Age at interview 47

Gender Female

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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.

But apart from that the fact that its 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 its 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, 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

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The flipside of living in a caring community was that keeping the condition private could be difficult. As one woman put it, ‘People talk, and when they talk they usually get it wrong’. Gossip and stigma were a particular concern for families who were hoping that their children would find partners from within their own community and have a marriage introduction. They worried that knowledge about something ‘running in the family’ might put off potential marriage candidates for their children. However, two families with a Tay Sachs gene thought that the practice of marriage introductions in combination with anonymous carrier testing was a valuable safe-guard to avoid new babies being born with the disease.

Katy thinks the anonymous testing system for Tay Sachs carriers is a great idea and would like…

Age at interview 54

Gender Female

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Nicole’ And so my younger daughter, I took my younger… but here they have regular adverts in the Jewish Chronicle, and once every two or three months they have Tay Sachs screening days and you can go, when its normally in a, I wouldn’t say a church hall, but clearly it’s not, it’s in a hall somewhere in Golders Green. And you go and that’s run by the Tay Sachs Society. And you have blood taken there and when my daughter gave her name to the, the person that was coordinating it, she said, Well why are you here and I then discovered that these particular cousins were volunteers so they clearly, their children did have Tay Sachs Disease because they do internal audits. And then she was tested and she too was a carrier of Tay Sachs.

But I mean you’re living in quite an observant setting now?

Hm.

So then
Katy’ But I’m not sure that it’s observant enough that my children will all have introductions to their marriages in which case again I mean I just kind of hope that through all these kind of things. I mean I don’t really know much about it, so I don’t know. I mean you can’t eradicate the gene can you? Because clearly the gene even though it’s not producing a Tay Sachs child is passed onto my children, so it will continually…

Nicole’ I mean there are the chances of it popping up again aren’t there, further down the generations? I mean presumably how it popped up all those years ago.

Do you know if any of your husband’s brothers are carriers?

Nicole’ Oh I don’tmy husband’s got one brother. The chance of it can you imagine, no. But having said that I don’t know, but I’m sure he hasn’t. I mean my husband hasn’t been tested. I mean we’re just assuming that it must come from him. And I did mention it to my sister in law but I think that they are not really part ofthey are not religious people at all. So the chances of them marrying anybody that were Jewish I would think would be fairly remote.

What do you think about the system of the pre testing and the anonymity and, for arranged marriages?

Katy’ Oh I think it’s a great idea. I mean obviously in an ideal world that would be, not that introduced marriages are necessarily the way to go, but considering that that is something that happens, this is a great way of eradicating Tay Sachs children obviously, I mean, you know, sorry not that I mean, well you know what I mean. So yes, definitely, it’s a very good system. If you’ve got a system like that that’s already in place then why not use it, you know, to be able to I mean I think that’s the only thing they screen for. I’ve never heard of anything else.

No.

Katy’ No, because there are other ones that are Ashkenazi Jew based aren’t there? Is it cystic fibrosis is another one? I’ve never heard of them testing for it. Yes, I mean

Nicole’ Well presumably it’s fairly easy to test for. I mean certainly here I would think that, that the Tay Sachs Society or whatever, as they are, have set up this, its something like four or five times a year. I mean it’s well publicised on a Sunday, you know all day, and it’s free. it’s free and it’s manned entirely by volunteers, you know, who hav

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Miriam had several Shidduch – arranged marriage introductions before meeting her husband. Three…

Age at interview 47

Gender Female

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Can you, 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].

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.

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Support from health professionals

People's relationships with health professionals can make a difference to how they cope with their condition on a day to day basis. Most people we...