I’m Shushma and I live with my parents, my older brother and my daughter. I’m very passionate about spreading awareness on sibling bereavement and children who have special needs. I love to write, run and do weights. I used to be a special needs teacher but now I’m a bereaved sibling facilitator for Surviving the Loss of Our World (SLOW).
I believe in spreading love, kindness, fun and light wherever I go. I’m loud and full of energy as well as a little mad. I want to make a difference before I leave this world.
Shushma Jain shares her story of losing her brother Arvind. We’ll find out why siblings are ‘forgotten mourners’ and what Shushma is doing to help other adult siblings to cope with their grief.
SLOW Support for Bereaved Parents and Siblings
The Dead Sibling Society video podcast
Sibling Support mainly for young people
Sibs For brothers and sisters of disabled children and adults
Good Grief Trust Coping with losing a sibling
The Compassionate Friends sibling loss resources
UK-based charities focused on Muscular Dystrophy include Duchenne UK and Muscular Dystrophy UK
Arvind’s story was told in several media outlets and you can read more here.
The Arvind Jain Gastrostomy Pathway is now established, and you can read about it here.
Layla’s Life, My Words by Shushma Jain
Shushma’s Let’s Talk About Taboo Subjects Instagram page
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My Brother
Debbie Enever, Host
Shushma Jain, Guest
[00:00:00] Hello. This is the Bereaved Parents Club podcast. It’s the club none of us want to be members of, but here we are. My name is Debbie and I’m a bereaved parent. This podcast is for all of us to share and celebrate the stories of our children and offer support to each other. Each episode will explore topics that have relevance to us as we navigate the world as bereaved parents.
Whether your loss was last week, last month, last year, or even last century, you are welcome here. And whether your child was a baby, a youngster, a teenager, an adult, or even a parent themselves, you are welcome here. Please be aware that each episode will deal with themes of death and loss.[00:01:00]
We’re joined today by Shushma Jain for this special episode about sibling loss. Shushma lost her brother Arvind, who had Duchenne Muscular Dystrophy, in 2009. She works at a UK based charity called Surviving the Loss of Your World, and the charity supports people following the devastating loss of a child or sibling.
So welcome, Shushma. Thank you for speaking to us today.
Hi, Debbie. No, thank you, you know, for inviting me onto your podcast. I appreciate it.
Well, we’re going to spend some time today looking at the special grief that’s experienced by siblings. But before we do, I’d be really grateful if you’d tell us a little bit more about yourself and then share yours and Arvind’s story with me and the listeners.
Yeah, so I’m, I’m Shushma, as you said, and I live, um, with my family, so my parents, my older brother, and, um, my daughter, Leila, who’s, um, will be 11 soon. So with me and my [00:02:00] brother, my older brother, I should say, there’s 15 months between us, and I think that’s really important because Arvind was born when I was 14 years old. So there was quite a big age gap. So the baby of the family. And when he was born, very happy, very excited. I was, I couldn’t wait to be honest. And I was, I was praying – and obviously I was very young then, so I didn’t know anything – I was really praying he’d be born on my birthday, which was the end of January.
The due date was the beginning of March, but he was born three weeks after my birthday. Um, he just missed – not that I’m, I’m into all of that, the horoscope – so he just missed like the Aquarius sign and yeah, he became my world. Basically he became, became my everything. Um, and at that time he wasn’t diagnosed with, um, Duchenne and because, you know, they say 50 percent it can run in the family. And it’s mostly boys, men that have Duchenne. Um, but in our, in our case, my mom’s case, it was, they say a [00:03:00] mutation, which was a one off.
It took a while to be diagnosed because my mom kept saying there’s something like she knew there was something wrong, you know, being the third child, um, cause he kept falling over and things like that. And it was like, Oh, he’s just clumsy. I was like, he’s lazy, but he was, he was finally diagnosed in, um, when he was three years old.
And I was in the middle of my A levels. I remember it was the first year, just finished. And obviously, you know, you’re just Googling, never heard of Duchenne, didn’t know, and then obviously we just thought, you know, the thing that we read was life limiting. And it was like, you know, it was a shock to, you know, all our worlds, you know, mum, dad, my older brother. Um, and I didn’t know what, I was lost to be honest, completely lost, didn’t know what, what I wanted to do. I was, you know, I was going to go to uni and I didn’t want to do that. And I think it felt like, and I was actually going to quit my A Levels, and my mum and one of my really supportive teachers said, ‘No, just finish off your A Levels, do your last year, and then decide afterwards. If you don’t want to go to uni, that’s fine, but why, why waste, you know, you’ve got one year’. So I finished off my A Levels, and then my mum [00:04:00] kind of, like, supported me of taking, taking time off to see what I wanted to do.
Um, Arvind at that time went to, um, a nursery, which is an assessment centre for children with special needs, additional needs. And, um, it was Christmas and they needed a volunteer to help run the Christmas party. And my mum said, ‘Oh, well, do you want to go and, and, you know, see, see, you know, Arvin’s nursery and go and volunteer?’ I was like, ‘Oh yeah, that’s really good idea’. So off I went, volunteered, help out. And then the next thing I was approached for volunteering, um, to start in January, because they thought I was good with children and would I like to come? So I said yes.
And that worked because Arvin used to go to the nursery in the afternoon. I was working in the morning. And then they offered me a full time role as an LSA. And the reason why I mentioned that, because I then ended up falling into teaching. Like, I’ve always loved children and, um, and I’ve, like, Special Needs then became my forte, so I was working in a Special Needs school and then from becoming an LSA I then became a Special Needs teacher.
Um, but that was much later on, because when Arvind was diagnosed I ended up doing the Open University. [00:05:00]. I wanted to be at home, I wanted to be with Arvind. If anything happened, I’d be like, at least I was at home. If, you know, if I needed to go back to uni, I could for the OU, you have a 10 year kind of span for it.
Um, he just became my world to be honest. So we did everything together. He was like my best friend, you know, my cinema buddy. You know, we’d go to the park, swimming twice a week, three times a week. Going to the library, you know, looking at the comics and stuff. And we never spent a day apart to be honest.
Gosh, that’s a really intense loving relationship then that you’ve got with him.
Yeah, um, I think it was really hard at the time for people to kind of understand as well, I think, the relationship. But I guess it was like being the second mom because it was 14 years between us as well, you know, and being the baby of the family.
Um, So did Arvind have quite high care needs as he grew up a little bit?
Um, yes, he’s high care needs. And so he stopped walking when he was eight. So with the Duchenne, so I’ll just, you know, give a little bit of background with the Duchenne, it’s [00:06:00] basically the muscles slowly start to weaken. So obviously they can walk and, you know, physically, you know, they’re able to do everything, but then slowly, slowly the muscle deteriorate and then the legs, um, go first. So he was, you know, walking, and then it was then stopping, you know, it was, they then ended up using a wheelchair a long time. And then obviously then he had to use it full time, he couldn’t wait there. So when he was eight, he stopped walking.
But, do you know what, Debbie, I always say my, my brother is my teacher, and he’s like, he’s taught me what there is about life, and what there is to life. Because even when he stopped walking, he was like, I don’t mind, I don’t care, I’m here, I’m living, and that’s all that matters. And I think for me, I’d just change my whole perspective on life when, you know, when Arvind was diagnosed, just the way he treated just everything in life, he was very placid. He saw the good in everyone.
And he just got on with it, it didn’t matter what it was. He just never really complained. And you know, he used to go on holiday and things like that. And he was all just very cheerful, always had a big smile on his face.
Well, he sounds great. Can you tell [00:07:00] me about what happened with Arvind just prior to his death and what impact that has had on you and the family?
So we, it was our last holiday. We didn’t know that at the time. It was through Make A Wish. We went to Florida. He turned 12 in Florida because we had his birthday there. And he had a choking episode and we saw, you know, he choked on some popcorn and we thought, you know, it happens to all of us, never thought anything. Came back, um and that was 2008 and Arvind died in 2009. Just so you know, listeners have a bit of a picture. And, um, but slowly, slowly, um, basically the, the muscles started deteriorating in his, in his throat. So that’s why he started choking on his food and he loved his food. Everyone that knew him, he absolutely loved his food.
He started like losing weight and then Christmas, um, he got a chest infection and ended up at the local hospital and in, in all this time, uh, the hospital he was under, which is a special hospital, had moved, unfortunately, to a different hospital because they thought all the [00:08:00] needs of the children would be met there because they have to, you know, they need, um, Um, like a back operation for scoliosis for the heart. So they thought instead of using all the different hospitals under the one hospital, it would be more easier.
And that’s when things kind of, kind of went wrong because no one was really doing anything. He needed basically a feeding tube to be fed. So he had the NG [nasogastric] tube, um, and then from basically, you know, December, 2008, January, he then ended up in hospital, um, for two, three months, home for a month, in for two, three months, home for a month.
And the NG tube wasn’t lasting because he was throwing up, he was being sick. And then we wasn’t expecting it because, you know, his consultant had known him since he was three. I’d specifically asked him the question, you know, ‘is Arvind dying?’ And he said, ‘no, he’ll have this operation. I think he’ll be fine.’
Then we had a big meeting. Arvind was in hospital, his local hospital, and we were lied to. It didn’t happen. And then I remember very clearly the doctor at the local hospital that Arvind was under, he called me out. Arvind was in his, you know, in the cubicle with mom. He [00:09:00] called me out. And he just told me in an open corridor, the nurses back, I could feel the nurses, you know, you know, you feel them watch me while, and he just told me and it was completely out of the blue because we wasn’t expecting it.
And he didn’t expect me to cry because his exact words were, ‘Oh, I thought it’d be much easier telling you because you’re the sibling, not the parent’. And then me and my mum made a decision to tell Arvind. Again, the same attitude was ‘if I’m dying, I’m going to choose the way I die. No one’s going to tell me how I’m going to die’, because they wanted to do this, wanted to do that. And he said, ‘no, you know, you guys, you know, you’ve lied to me enough. Now I’m doing it my way’.
Um, yeah, they told us a few days, um, it was seven weeks and we were all there, you know, cause my mom never left the hospital. So she, she said, so it was me and my brother and my dad were there on his last day as well.
That sounds like a very traumatic experience.
Yeah, when I look back now, I still can’t believe it. It was very traumatic, because even, even afterwards, three years it took, well it took us, because I wanted to fight the case. Um, [00:10:00] and so it ended up being in the newspapers and in the media and everything, um, and, and the hospital didn’t want us to know the truth and didn’t want the, the public to know the truth.But I needed, I needed to know the truth, um.
I mean that’s a long time, three years, to be actively seeking justice, reparation, all those kind of things. What’s, what’s been the outcome and are you, I suppose satisfied isn’t the right word.
I know what you’re going to say because we’ll see a lot of people, especially bereaved parents, bereaved siblings, you know, ask like how, you know, ‘how did it feel afterwards?’ Medical negligence, 100 percent it was medical negligence, so he died from medical negligence, had he had the operation he would have lived. And we were even offered compensation, they don’t do it for children, they say, because children, they’re not, they’re dependents, they’re not earning, they’re not working. Obviously we turned that down because we didn’t want the hospital’s blood money, to be honest. We wanted changes, we wanted a pathway, so there’s a pathway in Arvind’s name.
And how did I feel afterwards? Relieved that I had the [00:11:00] truth, and it was there, that the hospital had no choice but to admit it. But it was a double edged sword because they didn’t bring Arvind back.
He wasn’t there, and I felt very empty afterwards, because those three years I don’t know if obsessive is the right word, but yeah, afterwards it just felt, he’s not here, it doesn’t bring him back.
Yeah, I think that’s when something’s taken up your time and energy, it’s a diversion from grief as well, because you feel you’re still actively doing something for your brother at that point. And when that’s over, where do you feel your grief has manifested itself? Or how do you feel your grief has manifested itself?
For me, I always say, and some, you know, sometimes people find this weird. For me, I find Arvind’s death has now become my strength. And I say that because it’s the worst thing that’s ever happened to me in my life. And, you know, I was 27 at the time. But after 15 years of I’m still here, living life, I know I can get through anything. Because I faced the worst [00:12:00] thing that can happen. And I carry him with me. And in everything I do and in little ways that people won’t even know, but like, so I feel that he’s with me and I feel any decision, anything I make, he’s my inspiration and my motive behind it, to be honest.
And I always feel, I always have conversations with him, like he’s still here, to be honest. Um, but, and I talk about him openly, Debbie, I’ll never say like, I have to talk about him. I don’t care who it is because I’ll probably say I’m very proud to be known as Arvind’s sister.
I’m glad that you feel that way. That’s lovely. One of the things that we wanted to talk about today is the, the idea of sibling grief, um, because that’s often overshadowed by bereaved parents. And I know that there are some organizations out there supporting siblings now, but for you, when you lost Arvind, do you feel there was any support around? Do you want to tell us a little bit about the idea of the Forgotten Mourner?
Yeah, so [00:13:00] siblings are known as the Forgotten Mourners, and the reason why we’re known as that is because is because so when, when our sibling dies, for example, everyone will ask how our mom and dad is, or, you know, if they’re married, you know, the partners, but no one will ever ask how the sibling is.
And somehow you unexpectedly fall into or subconsciously the role of doing everything, whether it’s answering phone calls or picking up things that need to be done. Um, and the roles kind of reverse, you end up being kind of. The parent, because obviously your parents are grieving and having to deal with things that, that need to be done, the practical stuff, but because you’re doing that, you then got the mask on and then people forget that you’re grieving.
And so you end up being the forgotten mourners. And I think from my, my age, people just say, ‘oh, you’re not, the parent doesn’t affect you as much. You’ve got your own life as an adult sibling’. I’m going to say, you know, for me, so it hasn’t really affected you because you’re, you know, you’re still doing your own life.
[00:14:00] And then for younger siblings, they feel it doesn’t affect them. When I say younger, it could be, you know, teenagers, siblings at uni, ‘it can’t affect them because, oh, they’ve moved out now’. ‘Oh, they’re going to uni. Oh, actually, they’re a teenager, what do they know about grief and death? They’ll just go back to school and move on’. I hate that term.
So it’s, and so we’re the forgotten mourners and I always say we’re the ones that shared everything more of our siblings. So we have that history of, of, ‘remember when we did this, when we were young and the childhood and this and that’, because we’ve shared it together, we have the present of what we’re doing, you know, whether it’s at school or, you know, whatever you’re doing and sharing and in the future of, you know, ‘Oh, when you’re older, when I’m older, you’re going to be my bridesmaid or we’re going to do this or we’re going to do that’. And then that’s all gone, because you’re expecting to be there, you know, through, through old age, you don’t expect this to happen. [00:15:00] And I think people forget how important sibling relationships are. And there should, I feel there shouldn’t be any hierarchy, you know, in the grief.
Obviously, you know, you know, I don’t, I can never understand what my parents, you know, are going through or have gone through. But I think people forget how it does affect siblings. And also even now how polite siblings are, but even in the support groups, I’ve been to both, and just how polite siblings are even then to support each other.
So tell us then a little bit about what life looks like now for you and the family.
Arvind is still very much present in our lives. We just had 15 years last week and you know, we do things like go to his favourite restaurant, we wear red, or, you know, his, his photo on, you know, on our t shirts, we release a dove, just stuff that would kind of remember him, because even his funeral wasn’t religious, it was very much upbeat with pop songs, and we didn’t want anyone to wear black or anything, we wanted everyone to wear red, which is his favorite color, or bright colors, which Arvin loved, so we kind of, we’ve made sure [00:16:00] we’ve continued that today, and my daughter, yeah, she, she would always say Uncle Arvin, and she speaks quite freely about, about death and, you know, photos of people coming, going, ‘oh, we haven’t met this young man’. And she’d go, ‘oh, no, that’s my Uncle Arvin, he died’. So it’s not a taboo subject, it’s very much, you know, open.
You know, we still have our bad days, I say, you know, it still affects us, but we talk about it very openly as a, as a family, which I think is so important. I adopted my daughter, but you know, having my daughter, a lot of people feel it’s kind of a substitute, a replacement for Arvind and it isn’t. You know, people I guess that haven’t been through it, I always say, you know, even if you have three, three children or one child, you know, it doesn’t compensate.
No, absolutely not. We feel differently about every individual. No one individual can replace another. It’s not how it works, is it? So tell me a little bit then about what you’re doing now and how that supports siblings.
So I’ll go back to obviously when Arvind died, we felt very alone, very isolated, no support from friends, which, you know, is the usual, you know, I think, [00:17:00] you know, you might’ve experienced that.
Um, and my mum felt she really needed to talk to other bereaved parents or families. And I thought, I thought to myself, mum, there isn’t anyone out that it’s not, you know, like AA or anything or, you know, like, um, you know, gambling anonymous. And, but actually she was right. And, and someone had found out about Surviving the Loss of our Child.
So it’s like, and this was a month after Arvind passed away. We attended, we attended the first group. It was, and it was four bereaved parents, but actually I say four bereaved parents, it wasn’t a charity then. It was just two parents. Nick and Suzi had set it up because obviously their, their children had died and it was in a church hall and there was about four or five parents.
And I went with my mum and they welcomed me with open arms. And we’d go every, you know, we’d go every Wednesday, no matter how cold it was, and it was just our safe space, take the mask off, be ourselves. And then after the year, I went back to teaching. And, you know, they, you know, they asked me if I would do, you know, volunteering things and, and [00:18:00] things like that.
And I obviously had, you know, still did volunteering very much in touch with, with SLOW. And then, and I have to say, during that time, when Arvind died, I stopped writing. And I stopped exercise and I comfort ate. That’s how I kind of dealt with the grief. So I put on about 28 kilos. Um, and I, you know, I just stopped.
And then COVID hit and I can’t even say to you Debbie what it was. I don’t know if it was because I came out of the hamster wheel. We had to shield because my daughter has cystic fibrosis. And for four months, we didn’t leave the house. I stopped comfort eating. I started exercising again. I did, I got the weights out the garage and I went back to my, to my previous self of when Arvind was here.
Everyone said, ‘Oh, you’ve gone back to how you look when Arvind was here’, those who knew me. So I did that and then I quit my teaching job, started writing again. And then I was meant to be volunteering for Surviving the Lost of the World, SLOW, running support groups. I asked them, come on, you do the workshops for younger children, why aren’t we doing adult siblings? It’s much easier, you know, safeguarding and things like [00:19:00] that.
And they were very good. They supported me. They said, put a proposal, put it towards the trustees. And, and that was accepted. And so I was gonna do that face-to-face once a month, and then Covid hit. And I thought, oh, forget that, that’s, that’s not gonna happen now with, you know, with money and everything like that. And then I got a phone call to say, actually, we want you to work with us, we don’t want to kind of lose you. And so that’s how I then joined SLOW, um, working for SLOW, I should say employed for SLOW.
And obviously things changed, obviously then became a Zoom, you know, we did it online. And so that’s how I started running the sibling support group for SLOW. Um, me and another co facilitator at the time. So we had our training and we set that up during COVID and then when things started to change, that’s once a month, just so you know, whoever’s listening, that’s once a month and that’s on Zoom and that’s, there’s no criteria.
Also, there’s no criteria 18 and over, there’s no criteria for that. Um, it’s, you know, siblings can die from any age, any circumstances. And it doesn’t matter how long ago the grief was. That’s really important, but obviously UK based. And then also when [00:20:00] things, you know, COVID started to kind of be a bit better, did face to face.
And so now we do that three times a year, face to face as well. And that’s, that’s a very informal where we all just meet up in a pub, have lunch. It’s a drop in, you know, have a drink. Um, and it’s so useful. It’s so valuable. And I learned so much even now. like from it. Like I think, ‘Oh, I didn’t think of that. Oh, that’s amazing’.
It sounds really weird, but I love my job and I love it because I’m so passionate about it. And I don’t want, there was nothing for me at that time. I was very lucky that SLOW did open their arms to me as a sibling because it was, I was the only sibling that went, went to, you know, went to the group and they opened me welcome arms, but otherwise there was nothing out there for me. And that’s why I just felt we need a sibling support group. They need to know they’re not alone.
And so now are the groups online and face to face quite well attended?
They’re quite well attended. So now obviously there’s me and um, my co facilitator. Um, so a new co facilitator, she joined last year and she, she’s got, you know, her grief is very different and she [00:21:00] brings a lot more different perspective as well.
I’d like, you know, cause obviously mine is different with, you know, being 15 years. Hers is very much different. She lost her sibling when she was a teenager. 30 years ago, nearly. So we’ll see two different perspectives. And the Zoom groups are once a month, every month, unless we have our face to face. And for me, I say they’re well attended, but for me, it doesn’t matter how many attend as long as we’re getting the word out there.
But, you know, on average, it’s, we like to keep them small, six or seven. But as I was saying to you last night, we had 11, so it just, it just fluctuates. You know, it does fluctuate on how many attend.
The thing is, it’s there. And like you say, it’s not about how many attend. It’s that when you need it, it’s there for you. I think that’s the key thing, isn’t it?
Yeah. As soon as like, like I get referred or the email the first thng I like them to know is that we know we’re bereaved siblings. I think that’s so important. They feel okay. It’s not just someone who’s, you know, just running a support group.
Yeah, I think that’s very important. So obviously you, you will have, [00:22:00] like you said, learned quite a lot as well with being in the, the sibling groups. Do you have any particular messages that you would like to send out to other bereaved siblings?
I just want them to know they’re not alone and that what you’re feeling is right. It doesn’t matter how you grieve. Um, there’s no right and wrong. It’s very personal to us, and, and to give time for yourself to allow that grief. And it doesn’t matter if people think you’re a forgotten mourner, you know that relationship with your sibling and how important, you know, how important it is.
You know, people always say about how long would this last, the grief? And I always say to siblings, that’s one of the things, with love comes grief, they go hand in hand. You know, and you’ll never stop loving your sibling and so the grief will always be there because it’s a double edged sword. But I want you to know that I don’t say it gets better, the grief is there. Grief is still there, it’s in the middle, but slowly, slowly you let other things into your worlds.
And I can’t even say when, how, it just [00:23:00] happens slowly. Um, and you won’t feel that intense pain and, and you will be okay, but you need to do what you need to do for yourself.
Thank you. I know that by the sounds of things you mark milestones and, and anniversaries, you know, quite consistently as a family, which is lovely. Do you do anything specific that you feel is a very ‘sibling’ thing to do? As somebody who hasn’t A, got a sibling and B, lost a sibling. I don’t know what I’m talking about now.
I think it’s an outlet, to be honest, an outlet of So it could be, I don’t know, like some people, you know, some people are creative and writing. Or it might be exercise or just being with nature.
Yeah, it’s, it’s a tricky one, isn’t it? Because a lot of the ways that you will cope with grief will look like the way that everybody copes with grief in the sense that we’re all doing it differently and we’re all doing it at our own pace. We, we, some of us might find writing helpful or going out in nature [00:24:00] helpful, but there is something special about that sibling relationship where you’re walking more side by side, I think, with that person in a way that as a parent – even if our children are adults – it’s not the same relationship. It’s not that conspiratorial relationship that you might have with your, with your sibling. Um, the kind of things that you might say behind your parents back that they will never know. It’s a bit, it’s a different relationship, isn’t it? So I guess you might be doing things that you wouldn’t necessarily share with your parents about how you remember Arvind, or, you know, and that might be the same for other siblings too.
Yeah. I think the very sibling thing is, is that we don’t show our grief openly. We don’t, we don’t talk to our parents because we don’t want to upset them. And then if your friends don’t understand or your partner doesn’t understand, it’s like what you said, it’s then how can I share and speak about them?
And so obviously the support group I think is, you know, siblings get a lot from it and cherish it, they say.
Yeah. It’s valuable, isn’t it? To share those stories that, yeah, that perhaps you don’t want to share with [00:25:00] anybody else as well. You mentioned about writing. Can you tell us a little bit about your writing journey then?
So um, so I’ve done, I’ve done like English language and lit from degree. I’ve always loved like writing and writing and reading but it’s writing now mostly I would say and I used to write a lot when Arvind was here and also like I said I had the ten year gap. I’ve gone back to it now. And so what I write about is either about invisible disabilities and special needs, which I’m very passionate about, and about grief and taboo subjects like grief, um, woman’s rights, you know, like the, you know, the racism that happened in the riots, just, just things like that, that I just feel it’s really important that we need to talk about. Obviously grief is one of the things we need to talk about. And, and that just helps me. It’s like an outlet for me to talk about these things openly.
And I, and I published a book during COVID as well. It was regarding my daughter. So, so I’m starting to write books and things like that. And I do want one is [00:26:00] to write about grief as well, like on sibling grief. But, um, I, and I wrote about hidden disabilities and home education because I home educate my daughter. So, um, yeah, so I did that. So, so the writing has kind of taken off for me as well during COVID.
You mentioned earlier about feeling that Arvind is very much the inspiration in a lot of what you do. Is that involved with your writing as well then? Do you feel his encouragement?
I feel his encouragement because I just feel for Arvind it was like if you want to live life, it’s how he, how he lived it with the right attitude, with the right enjoyment. You just get on with that and you be kind and you make a difference.
So it’s like wherever he went, you know, he spread light, he spread sunshine. That was him. You know, his aura. And so when I write for me, I just want to make a difference, like a little difference so that if I’m, if I’m dead tomorrow, I know I’ve made a little mark on this world. I’ve tried to make a little difference.
That’s lovely to hear. Is there anything else that you particularly want to tell us about today, Shushma?
I think the other message for siblings is to know that it’s okay to laugh and cry, not [00:27:00] feel guilty that they’re here and that they’re living. And so I want that message to come across, it’s okay to laugh and it’s okay to cry.
I’m not going to say because your sibling wanted it, because I will say, well, how would you know what Arvind wanted? But I am going to say, you know, like they, they feel it so much and I’m just going to say, no, you know, don’t feel guilty.
Yeah, there’s, I would guess, some survivor guilt of some kind in there for siblings, within the family unit, to be the ones that have survived, um, must have a unique sort of weight to it?
A unique weight or sometimes, you know, siblings feel maybe the wrong sibling died because, you know, they were a much better sibling or, you know, they carry all of that, to be honest. Yeah, that’s, that’s huge. It’s huge, yeah, it’s huge.
And I guess that’s the kind of thing that, um, you would talk about in a group. Because that can be quite difficult to discuss in a family situation, no matter how open or positive or kind or supportive you’re being, sometimes you just want to say the things that are not as easy to say, I guess.
Yeah. Especially like certain circumstances of death and things like that, that might [00:28:00] be a bit of a taboo in society. Or they feel that they should, they should be grieving less because of the circumstances they died when that’s, it’s irrelevant. You loved your sibling, your sibling loved you, um, and you’re grieving. And that’s, you know, that’s why we’re here, and that’s the most important thing, to be honest.
Well, thank you so much for sharing all of this with us. It’s been really fascinating, if that’s, again, the right word. As a bereaved parent, I don’t meet many bereaved siblings. I’m really grateful that you’ve taken the time to share this with us and that we can kind of open the door to supporting bereaved siblings as well.
Shushma, one of the things that we always ask our guests is to tell us something that they’re grateful for. So can I ask you now to perhaps give us something that you’re grateful for?
Um, you know, I’m going to say The Simpsons! Yeah, and the reason why I say The Simpsons is and people will laugh because Arvind loved The Simpsons and luckily that I, I love them too because it’s because I get to wear the t shirt and I’ve got a tattoo of, um, Lisa and Bart because people think I’m crazy because she really loves The [00:29:00] Simpsons but I know what it’s for. So, yeah.
Yeah, who can’t get behind a bit of Simpsons?! That’s wonderful stuff. Thank you very much. And now you see every time I watch The Simpsons you and Arvind will also be in my mind.
I just want to say as well, Debbie, for giving this platform for siblings, I really, you know, appreciate it as well, because it’s very rare that we get the opportunity as well. So thank you.
No, it’s been a privilege to be able to, to share this and to kind of get the message out to other siblings about what you’re doing as well. So thank you. And thank you for your time.
That was my conversation with Shushma Jain. Links to all the topics that we covered today can be found on the episode listing.
And we’ve got lots more on our website at www.bereavedparentsclub.org.uk. Thank you for listening today. [00:30:00]
This episode is dedicated to Arvind.