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Organ donation

Coping with bereavement

Everyone grieves and deals with bereavement in different ways and most people feel many different emotions at various times and stages, including anger, guilt, sadness and despair. When a death has been sudden and unexpected, feelings of shock, disbelief and sadness can feel overwhelming and it is sometimes hard to imagine ever feeling ‘normal’ again.

Donor families we talked to described how difficult the first few days and months had been as they struggled to make some sort of sense out of the suddenness of their relative’s death. Some talked to those who’d seen their relative just before the emergency situation. Others went back to the hospital to talk to doctors or nurses about how the unexpected illness could have led to their relative’s death. For many, seeing their loved one’s room and belongings was distressing when they came back home from the hospital, often only days after their relative had been admitted.
 

Catherine talked to various people shortly after her son’s death in an attempt to work out how it...

Catherine talked to various people shortly after her son’s death in an attempt to work out how it...

Age at interview: 63
Sex: Male
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There was some comfort strangely enough, even the devastation of his death, but there was the comfort first of all that his collapse could have happened in a very different place. He could have been out training. He could have been out cycling, because he cycled as well as part of his training. He could have been driving the car. He could have been out with Gemma [the dog] and collapsed.

But he’d come home. He’d been to the dentist that afternoon for a check up. He’d had flexi-time from work. He’d had a pint with his colleagues over the lunchtime and then he’d finished work, as I said on flexi-time. And a neighbour across the way had seen him, but she can’t recall whether Gemma was with him.

So it was either when he was coming back from being to the dentist, because he would have called there on his way from work, or whether he’d been out with Gemma. We don’t know whether he’d actually got Gemma out for a walk or not. But she takes comfort out of that, that she actually saw him walking past and spoke to him.

I think it was the sister that first met me in the A&E [Accident and Emergency] department, she said, “It could have happened as John was coming down the stairs.” The actual, John’s haemorrhage was caused by an AVM which is Arterial Venus Malformation, so he’d had it from birth, and it could have gone at any time. But as she pointed out, if we’d have found John at the bottom of the stairs, would we have wondered had he tripped and fallen down and banged his head or…?

My sister who came over, her daughter is a GP, and in the early days I spoke to [my niece] and I said, I needed to know if John had been in any pain. What she said, he would have had a headache, but the headache would have been that the headache was there, but the actual haemorrhage would have been, and he wouldn’t have felt anything. It would have been just so quick.
 

Eunice said she and her husband went back to work the day after their daughter, Kirstie’s, death because it was the only way they could cope. Jackie (Interview 21) made herself go shopping the next day and face other people because she felt that the longer she left it, the harder it would be. At this very raw time, donor families advised others to take each day at a time and not to be afraid of the different emotions they might feel.
 

At first, Eunice couldn’t imagine ever feeling better. She cried every day. Over time, her...

At first, Eunice couldn’t imagine ever feeling better. She cried every day. Over time, her...

Age at interview: 55
Sex: Female
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They say time’s a good healer. It’s not. You learn to live with it. It does get better. In the first, when it first happens, you can’t see the wood for the trees. You can’t see that it’s ever going to get any better. It does. You stop crying. You don’t cry every day. I used to have, I used to say what a good day, how good my day was by how many times I’d cried in the course of the day. And on the days, as it got better, that I could say, “I haven’t cried today,” was an exceptional day.

All I can say to somebody who’s going through what we’ve been through, and what we are going through, is talk about them. Don’t be ashamed to cry. It doesn’t matter where you are when you cry. The silliest things make you cry. You can be walking down the street and something happens and, if you’ve got to cry, then you do it because it’s the right thing at the right time.
 

 

Linda advises recently bereaved people to be kind to themselves. She felt in shock for about...

Linda advises recently bereaved people to be kind to themselves. She felt in shock for about...

Age at interview: 48
Sex: Female
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Be kind to yourself. One day at a time. I went round in a daze for I reckon about three months. I think I was in shock because, for us, it had been sudden. So there’d been no warning and nothing, you know, from being a happy little home, 48 hours from finding John, we were losing John. And it was all so quick.

So I think be kind to yourself, don’t expect too much. If on a day all you can do is get yourself up out of bed, get yourself breakfast and pretty much that’s about all you can cope with that day, so be it.

We don’t have to be superwoman or superman. I think we probably, there is a pressure put on people and of course becoming a widow, and I hate that word widow, people don’t see it. They see it initially and they understand that you’ve lost somebody and that that might have been also their friend or their neighbour, or their relative. But people’s lives move on and it’s difficult for them, for those around us, to understand the pain that you go through on a daily basis.

And I liken it to having a bag of sadness that I carry with me now. And some days that bag is just a little tiny bag and it’s very light to carry. And other days, and it could be the next day, it’s as heavy as a full suitcase. And time is not a healer. That is something I will never ever say to anybody ever again, “time is a great healer”, because I don’t think it is. My heart will never heal. It gets better, it’s got better, but it will never heal because we will forever have lost John and he will never ever leave our hearts at all.

But I think time, it allows you to adjust to your new circumstances, whatever they may be. And I think that’s why I would say just be kind to yourself. Just take every day bit by bit. And as time goes by, you’re able to deal with things in a better way, or it feels a little easier. But the grief comes back like a tidal wave so you can have gone for quite….

I mean I cried for every day for I think five months every day. And then I realised that I would go a couple of days and not cry and so that’s what I think time does. Time just allows you to just move on and adjust to your new circumstances.
 

Seeing other people going about their normal life could be difficult, and seeing anyone who vaguely reminded them of their relative heartbreaking. In the early days of bereavement, Liz said she looked at other couples and people older than her husband and it felt very unfair. Those who had lost children said they were sometimes choked with emotion when they saw a child of a similar age to their own or with similar features. Memories came flooding back in and they sometimes found their feelings of grief and sadness difficult to deal with.
 

Things that remind Craig and Sandra of their daughter can make them smile and cry. Feelings of...

Things that remind Craig and Sandra of their daughter can make them smile and cry. Feelings of...

Age at interview: 44
Sex: Male
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Sandra' She’s [daughter] still a part, very much a part of our family. She might not be here in the physical presence but we feel her round about us everywhere. And, as we say, we do talk about her, and that’s an important thing to do. I mean,

Craig' You’ll never ever forget them.

No.

Craig' You never, it’s like, a lot as I said before, people’s attitude is forget the people that’s dead, and move on. Never forget them. You always can talk about them and they’ll always going to be there. And that’s part of the, I suppose it’s the healing process. They’re still about you. And no matter where or what I’ll be doing she’s still be there.

Sandra' It’s silly things; when you’re feeling down you’ll hear a certain song that Rachel used to sing, it will come on the radio and you get a wee smile on your face. Or, as Craig said, like the chid… seeing the kid with the chocolate cake and things like that, you could have,

Craig' And there’s things that still take you away, like on holiday. We were away and there was a child in the restaurant, in the morning having her breakfast. This young, oh she couldn’t have been any more than 2 or 3 year old, with the curly mops of hair. And she was playing up because she was, Mum and Dad were trying to get her to eat fruit and she wasn’t having any of it,

Sandra' She wanted the chocolate pancake.

Craig' Oh she was just like our Rachel. And I saw this girl and my heart broke. My heart just went right in my mouth, and it was just as if it was Rachel sitting. From the back she looked very like her, from the front she wasn’t so much the same. They still had the same kind of facial size and all of that.

But it broke my heart. I could feel my heart going right up even talking about it just now. I had to leave. Things like that, you see the odd thing that catches you and you’re not ready for it. And it does just hit you. But I’m still proud of her. And that’s the main thing.

Sandra' We’re,

Craig' We’re still proud of her. We’re proud of her.
 

Some people described how difficult they’d found life without their relative soon after they’d died and how important it had been to have lots of support when they’d felt shocked, numb, depressed or angry. Everyone in the family dealt with their grief differently but sharing their feelings and stories about their relative had often helped.
 

Eunice and her husband grieved differently. He was angry but she found it hard to talk. She felt...

Eunice and her husband grieved differently. He was angry but she found it hard to talk. She felt...

Age at interview: 55
Sex: Female
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[My husband] and I grieved totally differently. When Kirstie first died, [my husband] found it very hard when Kirstie first died to…. he was angry. He was very, very angry. He would tell anybody, if somebody stood still long enough, he would tell them that he’d just lost Kirstie. And he was very angry. There wasn’t anybody to blame. There was nobody else involved in the accident. Sometimes I think it would have been easier if there had been somebody else because we could have blamed them. But there was nobody else to blame. And [my husband], he was very, very angry.

With me, I couldn’t talk to anybody. Unless people knew about Kirstie, I didn’t tell anybody. I could stand next to somebody in the street and they wouldn’t have known what was happening to me.

Don’t judge anybody who deals with it in a different way to you because we all deal with things in a totally different way.

And accept the way they deal with it because it’s how they’re made. I can’t expect [my husband] to deal with it the same was as I do because we are totally different people. The end result is the same hopefully and we are both striving for the same thing, and we’re both doing it for the same reason.

But they say things make you a better person. I’m still waiting to find that better person myself. It will come. And another thing is, as a donor family, don’t judge other members of your family. And, as a mother, and I don’t mean this horribly to fathers and siblings, but as a mother you deal with it in a totally different way, totally different way. You change, and for a while you become a person that you don’t like. I became a person that I didn’t like, but sometimes it is self preservation.

I became a very selfish person. So, as a family member, of a donor family, don’t judge, don’t judge what other members are doing or saying. As a family, support each other. Because what you’ve always got to remember is ultimately your loved one has done a wonderful thing and it’s not you that’s done it. It is the person whose organs have been donated. They have done the wonderful thing.
 

 

Liz’s children dealt with their dad’s death in different ways. One daughter became quite clingy....

Liz’s children dealt with their dad’s death in different ways. One daughter became quite clingy....

Age at interview: 46
Sex: Female
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We’ve got four children and obviously it was a big shock when Rick died that I weren’t expecting, they certainly weren’t expecting it because Dad’s always here forever, same as Mum.

At the beginning it was, I shared everything with them. From the start it’s be honest with them. If they ask a question, if you don’t know the answer find the information out and give them the information. Because, as an adult, you know that information helps heal, so therefore you know, I mean kids have got so many questions.

I remember [my middle daughter] dealt with it by walking away. And she was for at least three years after, “Where are you going? Who are you going with? How long are you going to be?” If you were five minutes late, or you weren’t where you were supposed to be, she’d be on the phone.

I mean that was one of the things I did do, even though they were young, because they had that many questions and they kind of stuck to you like glue, because they obviously figured that Dad had gone, are you going to go next? I bought them mobile phones because it was a practical thing to do. I went down to the schools and obviously they were sympathetic.

I mean [name], my eldest daughter, she still won’t go to the cemetery, but I’ve never forced her to do that. But if that’s the way that she feels that she needs to deal with it, then that’s fine. Christmas Day I go up; if they want to come they come with me. We’ve done things like got a memorial bench, and they’ve just put “Daddy” on it. And so they’ll go and sit there if they want to. They take flowers up if they want to. They ask about him. His things are still around the house.

[My eldest daughter] asked me, he used to collect bottles, and I hated them because they’re on the top and all they do is collect dust. But [my eldest daughter] said to me, “Well can I have them? And when I get my own place I’m going to put them up.” So we’ve kept them. There’s no reason to throw them away.

His shirts are still hanging in the wardrobe. His things are still around, photographs, you know. They don’t mention them, they don’t, they’re just part and parcel of the house. And it’s like if they don’t mention things, I’ve found that they’re coping with it.
 

Helping children through their grieving was paramount for parents and several advised others to involve children in all important decisions, to be honest with them and answer their questions. A few people had memory boxes in which they encouraged their children to put their loved one’s treasured possessions, letters, photographs and other valuable memories. Some adults also valued having memory boxes for themselves. Several said they would have liked more support, including counselling, for their children (see Support and where to get help). Liz (Interview 17) bought a dog for her four children and said it gave them something positive to focus on at a very difficult time.
 

Having a memory box helped Sandra, Craig and their son. It was difficult going into Rachel’s room...

Having a memory box helped Sandra, Craig and their son. It was difficult going into Rachel’s room...

Age at interview: 44
Sex: Male
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Sandra' We got a box for [our son], we got a memory box and one for ourselves as well. And we allowed [our son] to go in, in his own time, to go in and out her [daughter’s] room and take parts of her belongings and he would go in and put it in the memory box.

And we gave him a jotter and it’s again to write down things that he wanted to write, memories he had, things he wanted to keep. Or he went, he wanted to go in her room and shut the door, we just left him. But the memory box was really, really helpful. He found that really helpful. He would go through and, what games they played together and there was probably bits missing,

Craig' He put riding gloves,

Sandra' Ahah.

Craig' And things like that, because she loved horse riding. The riding gloves would smell of the horse, not that we owned a horse, but she was always at the stables. And like some of the clothes you’d have the, because you could smell the

Sandra' Aye, you could smell Rachel’s’ smell. The younger kids, they’d suggested that memory jars or thought jars, you know you can get the big jars and the kids can write down what they’re feeling and letters to them, their siblings, and things like that. That was something that was suggested. But [son’s name] felt he was a bit old for that. But for younger kids I think that’s a great idea, and to encourage them to talk about.

Craig' We did the same, we’ve got the box, the memory box as well, and it’s absolutely full to the, it’s huge isn’t it?

Sandra' I think we’re needing another one.

Craig' It’s huge and we’ve filled it with various bits and pieces that we wanted to keep. You can open it at any time, have a look at it, and that’s worthwhile, very, very much worthwhile, because it took us long enough even just to go into the room. It’s hard to even go in the room, look about the room and see things because it was still in the mess that she’d left it.

Sandra' Yeah. And her uniform was still on the bed,

Craig' And the uniform was like in, her uniform was like the, because it was the last day of school, last day of her primary school all the kids had signed “Best wishes Rachel from,” you know it was all on her school sweatshirt. And that was still lying out on her bed. And it makes it so heartbreaking to even see that. But things like that are kept away and they’ll be there forever now and it’s not going to be thrown away, and they’re all in there.

Sandra' We will always talk about her if we’re going places or doing things, and I mean it was, we don’t forget about her.
 

Some women we talked to said talking about their relative helped them cope but their partner or husband had found it difficult to talk. Jackie’s (Interview 21) husband became depressed and she wished he’d been able to talk to other bereaved men. Haydn coped very much alone. He busied himself with work and getting reports for his son’s inquest. 
 

Haydn kept himself busy with work, the inquest and raising awareness of organ donation. He couldn...

Haydn kept himself busy with work, the inquest and raising awareness of organ donation. He couldn...

Age at interview: 52
Sex: Male
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After the inquest, then it’s like, I got stuck in with work and all that. And the reality does hit you sooner or later. And then when you’ve got to sort of like deal with that’s the way, you’re not, you’re a child down sort of thing. What the hell do you do? All this time had passed and like seventeen, eighteen months had passed, and the reality is I’ve lost a child. I’ve lost a son, and I don’t know how to deal with it.                              

And how I dealt with it up to that point really was running away from it. By getting stuck into the inquest, dealing with my sister, yeah I did one or two interviews and things like that. I actually went to a Tenants Association meeting, asked to put a load of Organ Donation Cards on it, but it went to about fifty maybe that night. And all fifty were sent off and they gave them back to me. And I just put them in the post. So, as far as I know, the fifty went off like, incredible, a standing ovation that night and I burst into tears [laughs] as you do, you know me.
 

Some people we interviewed felt that, while more distant friends and family had been able to get on with their lives fairly quickly, their daily lives had changed forever and this was difficult to get used to. They advised friends and relatives to be there for the person, to continue visiting, listening to them and allowing them to cry.
 

Your relative would have wanted you to be happy. With time, it is easier to remember the good...

Your relative would have wanted you to be happy. With time, it is easier to remember the good...

Age at interview: 71
Sex: Female
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Everybody reacts differently. It doesn’t matter to cry, but somehow I think you owe it to the person not to completely disintegrate. They would have hated to have seen you in that state. You have to look back on all the good times, the fantastic times that you had together.

My personal view is you don’t make a shrine, you know like some people do with the bedrooms and that sort of thing. I’ve got my treasure box over there with all his little bit’s and pieces in. But I haven’t got a, you know what I mean, because you don’t want to push it in people’s faces when they come, because some people, we have ‘sorry’ in this country if you run into somebody with a trolley in Tesco’s. You say sorry to somebody if they’ve lost a child.

Some people find it very difficult. They will find, people will ignore them, and it’s not because they don’t care, they don’t know what to say. They don’t want to upset you, to make you cry, they don’t want to cry. And their heart is going out to you, but they don’t know what to say. They’re not ignoring you, they’re not, they’re caring but they just feel so inadequate.

Yes. Is there anything, a message or advice you would give to someone in that situation, because a lot of people will say, “I just don’t know what to say.”

A hand on the shoulder and, “I’m sorry what’s happened,” is all you need to do. You needn’t say anymore. Just a hug, or a hand on the shoulder, that’s all you need to say. Because the recipient will feel your love. It’s hard, but once it’s done and the longer you postpone it, the harder it’s going to be. And letters mean a great deal. If you can’t say anything, write a little note. How much or what fun you had, or anything nice about the person. It’s a great comfort, a great comfort because you find out things about your loved one that you didn’t know about.
 

Some of those interviewed had benefitted greatly from talking to people who had been through something similar, often other donor families. Others had sought bereavement counselling because they’d wanted to talk to someone professional and outside the family (see Support and where to get help). Many people needed to know that their feelings were normal and counselling helped to reassure them. Mick and Natalie (Interview 30) said that when their son first died, they found themselves doing ‘silly things’ and were very forgetful. Talking to a bereavement counsellor helped them realise that their feelings and reactions were very normal.
 

After a very bad night, Frank phoned the Donor Family Network. The volunteer was very supportive...

After a very bad night, Frank phoned the Donor Family Network. The volunteer was very supportive...

Age at interview: 62
Sex: Male
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Out of the paperwork that came from the donor co-ordinator [specialist nurse] was various organisations, and one of them was the Donor Family Network [DFN]. And I’d had a particularly bad night. I think it must have been about five o’clock in the morning, I saw there was a phone number. And I dialled it and I was expecting to get an answer phone to leave a message.

But, bless her heart, a very sleepy [name of DFN volunteer] answered the phone. And I just burst into floods of tears, and she spent, oh crikey, I think it was nearly an hour we were on the phone, reassuring me. Because she’d been there. She’d lost her partner, so she knew exactly what I was going through. And they’ve just been absolutely marvellous. On a couple of occasions I’ve had need to call them. I was worried about how the grandchildren were reacting, and [name of DFN volunteer] said, “Okay, I’ll come down and pay you a visit.”

So she drove down, all the way from Birmingham, had a long chat with the grandchildren and she said, “There’s nothing at all wrong with the grandchildren. They’re behaving quite normally.” She said, “There is somebody here with a problem,” and she turned to my daughter and she said, “You’re the one with the problem at the moment.” So she helped [my daughter] to sort herself out.

But they are a wonderful, wonderful organisation. It’s just run by donor families, for donor families.
 

 

Counselling helped Lesley get rid of anger she had towards the other driver involved in her son’s...

Counselling helped Lesley get rid of anger she had towards the other driver involved in her son’s...

Age at interview: 58
Sex: Female
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Eventually I found CRUSE bereavement counselling and this fabulous young lady came out to see me. And she herself had had experience of bereavement, and so that helped a lot because you felt this person had some understanding of what was going on in your mind.

And I perhaps didn’t realise that I had a lot of anger issues with the whole thing surrounding Kristian’s death and a lot of anger at the other driver. There were question marks over really how the whole accident had happened and I felt that the other driver could have made some admission as to, “Yeah, well perhaps I did do that, perhaps I did start to move. And that’s what made Kristian slam his brakes on.” That was the opinion of what might have happened.

But she unfortunately wouldn’t admit to anything at all and I was quite angry at her. I wasn’t holding her responsible because I think that there was an element of doubt as to, I think Kristian had had some part to play in it. I think maybe he was travelling too fast.

But I just felt I needed her to say, “Yeah, I think maybe I did start to move forward or,” just a little admission that there was, somehow she had been involved. And with the counselling, this young lady really helped me to get rid of this anger. And she came once a week for, to my home, for several weeks and it could have even been several months. And she said, “I’ll keep coming for as long as you need me.” And I think it was my lifeline really. It helped tremendously.

And very, very slowly, you do get back into normal life. But I would probably say that the state of shock lasted for, I would think, a couple of years before I felt I was coming out of that cocoon really of that you seem to find yourself in. And I think that so many things go through your mind over the years and there are so many “What ifs? What maybes? What might have beens?” And nobody can answer a lot of those questions.

And you are able to get on with your life and you are able to function again. And there is life on the other side,
 

With time, many people were able to focus more on the positive times they’d shared with their relative. Thinking about how he or she would have wanted them to live and be happy had helped them start getting on with life again. Knowing that someone else had a better quality of life because of the gift their relative had given also helped, including letters from recipients. Being able to accept the death of the loved one was important and sometimes counselling had helped them reach this point.
 

Reiki helped Ann accept her son’s death and she later became a practitioner. It is easier to move...

Reiki helped Ann accept her son’s death and she later became a practitioner. It is easier to move...

Age at interview: 57
Sex: Female
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The one thing that I have done is become a Reiki Practitioner. I got interested in holistic therapy and healing. And I find that has helped me a lot because the principles of it are “Just for today, don’t worry.” And “Don’t use all your energy on something that can’t be changed. Use it in a positive way.” I find that’s helped me a lot because there is nothing I could do, there is absolutely nothing that I could do that would give me another five minutes with my son. I know that, and I have to accept that. You have to have acceptance of that and move on.

The people who dwell on it and get bitter and torn apart by it, I feel really sorry for them because until you get to the point, when you can let it go and accept it and you let it go, you’re living on another planet. You don’t know where you are, you’re totally in limbo and it’s a horrible place to be.

But when you get acceptance, then you can move on. I’m not a religious person. I haven’t got any particular faiths or anything. I treat other people as I’d like them to treat me. I try to be kind and fair and honest and all those sorts of things. But I don’t feel the need to go to church to do it.

We had our son buried so we go to the cemetery and have a little word whenever we need to. And I find that works for us really.
 

 
Many donor families we talked to said that, although time had helped them to come to terms with life without their relative, it hadn’t been ‘a healer’. The pain would always be there but they had learnt to live a different life. Their relative was and always would be a huge part of their lives. Talking about them and keeping their memory alive was crucial and supportive. Some people became involved in promoting organ donation and this, too, was a positive way of talking about the gift their relative had made.

For most people we interviewed, the anniversary of their relative’s death or special days, such as birthdays, Christmas, Mother’s Day and Father’s Day, were difficult and emotional. Some people did things as a family to celebrate the life of their relative, including letting off balloons. Others visited the cemetery or talked with those closest to them.
 

Certain days of the year are very difficult. Jackie advises doing only what feels right for you...

Certain days of the year are very difficult. Jackie advises doing only what feels right for you...

Age at interview: 71
Sex: Female
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Christmas is difficult, birthdays are difficult. The day of the death is difficult, but you just have to realise they are going to be pretty gloomy days. And, if you don’t feel like meeting people, then organise yourself so that you don’t have to meet people. If you want to be alone in your grief, on the other hand sometimes people find it better to go out and be with somebody.

Be true to yourself, don’t do what other people say you should. What you feel you want to do. People can’t live your life for you and if you want to shut yourself away for the day, then shut yourself off. If you want to go out and try and forget about it, do what you feel is right for you.
 

More experiences of bereavement can be found on the Healthtalk site on Intensive care: the experiences of family and close friends.

Last reviewed May 2016.
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