'I loved my grief because that was my brother'

By Louise Kinross

Family Life by Akhil Sharma is a semi-autobiographical novel about a family’s journey to two new worlds.

In 1978 the Mishra family from Delhi, India moves to New York, a place that’s fairy-tale like to the Mishra boys with its hot-water taps, elevators and wall-to-wall carpeting.

Then, just as the older son, Birju, is accepted into a prestigious school, the family is upended by a catastrophic accident: Birju survives a near-drowning, leaving him with severe brain damage. He is unable to move, speak or see.

The story is told from the perspective of the younger brother, Ajay. While his mother becomes a round-the-clock caregiver who can’t give up the dream that Birju will "awaken," his father becomes an alcoholic.

Ajay stands alone in his grief and guilt, raging against this new world in which the brother he knew is gone. “Seventy per cent of it is true,” Akhil told me.

My interview with Akhil began with his responding to a question I asked about what kind of internal life his brother had after his injury.

Akhil Sharma: I was thinking about your question about how much sentience remained in my brother. He could laugh, and I’m not sure what he was responding to, whether it was our tone. My mother said he could hear us and she believed he could understand us.

I remember right after we brought him home I spent hours talking to him and trying to get him to laugh and climbing on his bed and making noises so he would grimace. I do have the sense that something was there. An earlier draft of the book had more of the brother laughing.

My experience was that there were two horrible things that occurred. I began to feel that I could get him to make little grimaces but I didn’t know what this meant. I was only 12. And I found it frustrating, not only because the response was so little, but because my mother was forcing an interpretation upon this which made me unhappy. She said [Birju] was still inside, he was still the same. This made me really angry.

The other thing going on was I felt I had to do everything. I felt I needed to sit with him for hours every day and all day. At some point I began to not do so and my mother would shout at me and tell me I was selfish and that gave me further incentive to not interpret his reactions as meaningful. For me, and the character, his grimacing didn’t signify much, because there was no emotional satisfaction for me.

BLOOM: Because the brother you knew was no longer there.

Akhil Sharma: Correct.

BLOOM: Why did you decide to write the book?

Akhil Sharma: I want it to be useful. I felt something really bad has happened, let me make something good out of it.

BLOOM: I think the book beautifully captures the love and resentment that exists between siblings. Before Birju’s accident you describe him as the person who’s most valued in your family.

Akhil Sharma: In the end what matters is not what the parents actually do, but how it’s experienced by the children. The child views the parents focus on the brother, whose studying to get into a special school, as sort of ‘Thank God they’re bothering him instead of me.’

BLOOM: Yes, but after the accident Birju becomes the focus because of his severe disabilities and you’re completely overlooked.

Akhil Sharma: They say the way deprivation works is you don’t know what it is. You don’t know what you’re missing. It’s like a vitamin deficiency. For me there are two things. It’s reasonable for parents to focus on the sick child. The character and I to some extent choose to make ourselves small. We realize that there’s this enormous need and we shouldn’t be in competition for resources. At some point Ajay begins to hold his breath and asks God to give the extra breath to his brother. The child chooses not to be a problem and chooses to win attention in other ways.

BLOOM: Initially you spend a lot of time praying with your mother and trying to behave.

Akhil Sharma: After the accident it was a hopeless situation, so you do the one thing you can do, which is pray.

BLOOM: But in one scene you’re bathing your brother and you begin to cry because you say ‘We’re not good enough people.’ This resonated for me because I’ve often found that my son’s disabilities seem to show up all of my inadequacies, all of the ways in which I wish I was a better person. At other times, if a negative thought about your brother enters your mind you immediately chastise yourself.

Akhil Sharma: That is exactly right. Another way you are constantly aware of your inadequacies is that there’s this enormous need and you can’t behave in a perfect way, so you’re constantly getting angry. You’re always aware of your inadequacies and also of not having enough money, enough resources, of not being smart enough. You’ve got an insurance form to fill out and why does it take three hours to fill out? All of these things make you aware of being a failure.

BLOOM: You talk about wanting others to see that Birju mattered. Why did you feel he had been stripped of his value?

Akhil Sharma: Because I didn’t understand what this thing meant. I felt that because this thing was so enormous for me, I wanted everyone to value it in the same way I did, and other people couldn’t. They couldn’t comprehend it. They didn’t know what it meant to spend all of our time in hospitals. I felt that since our world had ended, other people’s world should have ended also.

BLOOM: Did no teacher or health professional ever tell your parents that you, as the sibling, needed special support?

Akhil Sharma: No. We had none of that. I had an aunt who is a doctor who is an utterly useless woman. A colleague of hers said ‘Hey, this thing occurs to the entire family, and they should go to talk to a therapist about it.’ And my aunt said: ‘Oh, all you do in therapy is talk and in our families we talk all the time anyway.’

BLOOM: But that kind of conversation would have had to be facilitated by professionals.

Akhil Sharma: I remember how shocked I was when I read in Shakespeare where a king tells a mother ‘You grieve too much for your dead child’ and she says:

Grief fills the room up of my absent child,
Lies in his bed, walks up and down with me,
Puts on his pretty looks, repeats his words,
Remembers me of all his gracious parts,
Stuffs out his vacant garments with his form;
Then, have I reason to be fond of grief.
(Constance, in The Life and Death of King John)

I remember reading that and thinking holy shit: I loved my grief because that was my brother. If Shakespeare can do that to me, I hope when people read this book they feel that they’re not alone. When I was growing up it felt like I was the only one.

BLOOM: The feeling of shame comes up quite a bit in the book. At first you don’t tell kids in your school about your brother. Were there other students in your school with disabilities?

Akhil Sharma: There were not. The shame was vast and it was survivor’s guilt and it was attached to everything. It took on whatever form there was to take on. There was the shame of racism. That maybe I deserved to be shouted at or cursed at because I’m actually a bad person. Or the shame could be because I got good grades but really, I had to work like an animal, so basically I’m a loser because all I can do is work like a donkey.

BLOOM: One of the saddest parts of the book, I think, is when your dad gets treatment for alcoholism, and then starts telling people about it as a way of proactively helping himself stay dry. And instead of supporting him, the Indian community shuns him.

Akhil Sharma: Who would want their father to go around telling people ‘I’m an alcoholic?’ In middle class Indian culture it matters a lot how you appear to others and a lot of the status this family has was attached to it being considered holy. The father’s behaviour destroys all of that value.

BLOOM: The injustice of Birju’s accident, and how you come to see yourself as the lucky one in the family, leads to a lot of grief and guilt. There’s a line in there where you talk about how ‘Birju needed to be okay to be okay ourselves.’ I think that’s a common feeling for parents and siblings.

Akhil Sharma: For me there were two things going on with survivor’s guilt. There was survivor’s guilt relative to my brother. I remember walking around my school field and crying and having a conversation with God and in one conversation he asked if I would switch places with [Birju] and I said no. And I immediately thought I can’t be trusted. I’m selfish. It wasn’t that I survived, but that I would choose to survive over him.

And the other type of survivor’s guilt was with my parents. When [Birju] first came home from the nursing home there’s a scene where I leave my mother behind to go to school. And while it’s okay that I have a life different from my brother, it’s not okay having a life different from my mother. I didn’t want a life like that, that allowed me greater privilege than my mother.

BLOOM: You never got a chance to express your grief because your parents were so devastated. The one time you tell your dad how sad you are he shuts you down by saying he wished he could hang himself.

Akhil Sharma: The line, and I’m proud of this line is: ‘If you were half as sad as I am you would hang yourself every day.’ The father is tired, he’s unhappy, he’s hungover and he wants to push his son away. ‘You’re sad?’ is almost like a punch. And then he moves to ‘If you were half as sad’ because he doesn’t want the punch to land. He acts from anger and then he tries to correct it.

BLOOM: Your mom wants to ‘try everything’ to cure Birju, even when some of the treatments are wacky. This makes you feel lonely and disconnected from your mom.

Akhil Sharma: I viewed my mom as crazy. He was not going to get better, this is crazy. And some of this stuff costs thousands and thousands of dollars which we didn’t have.

BLOOM: I think it’s common for parents to go overboard with treatments even when there’s no evidence that they will be helpful.

Akhil Sharma: But the [healthy] child can see it. And the [healthy] child feels alienated.

BLOOM: If your parents had been more able to accept Birju’s accident, would that have made a difference for you?

Akhil Sharma: I think the sort of person who doesn’t go overboard would be a different person than my mother. Like someone who doesn’t go overboard might also not be the person who calls me selfish for not doing things for my brother. For my mother, it was ‘I will do anything and it doesn’t matter to me what I say or do to you because in the end my words won’t kill you. I’m willing to apply all the pressure in the world to get what I want.’

BLOOM: Every member of your family had an immense need for support and understanding and never got any of it.

Akhil Sharma: I’m sure professional help would have been very useful. But really, what would have been best was seeing other people in similar situations and not feeling so alone.

BLOOM: I couldn’t get over the scene in the book when you and your mom come into the nursing home and find Birju propped on his side and tears streaming down his face because he hadn’t been turned during the night. Did that make you feel that he had more of an internal life than you thought?

Akhil Sharma: Yes. But I didn’t know what that internal life meant. Even a dog can suffer. For me I was always comparing him to before the accident. The pre-accident brother was the real brother and he was always absent. What was left was a thing.

BLOOM: Your mom comes to the conclusion that to ensure Birju’s dignity you need to care for him at home. Was that the best solution for your whole family?

Akhil Sharma: When I was there and it was occurring, it was so horrible, the nursing home, that it seemed like ‘Let’s do this. Let’s bring him home.’ But in retrospect I think we should have left him in the nursing home and let him suffer and get sick and die. The best solution would have been a painless death. Bringing him home destroyed my family and me.

BLOOM: It seems that you were never given the opportunity to process your emotions in a way that would allow you to move forward, or to at least carry them in a different way.

Akhil Sharma: We don’t really move forward, we carry it with us, but viewing it in a different way, that seems to be a valid way of thinking about it. ‘Oh, that kind of thing happens to human beings. I’m a human being so why shouldn’t it happen to me?’ There are also wonderful things that have come out of this. It’s made me very attentive and loving.

BLOOM: What advice would you give parents in terms of how to treat siblings when a child is healthy but then has a catastrophic accident?

Akhil Sharma: I think one thing to keep in mind is that the healthy child will spend a lot of time trying to protect you, the parent, and that that is a bad thing. Our very best qualities end up damaging us. I would say be engaging with your child. Talk regularly about how whatever the child feels is okay. You have a right to love the sick child and you have a right to take care of him, but part of the healthy child's right is to receive his share of love and attention and we need to honour that.

BLOOM: Do you feel there are parallels between your immigrant experience and the experience of entering the world of severe disability?

Akhil Sharma: It’s a very strong parallel. It’s like a country of the sick vs the country of the well. When we left the nursing home we felt like we were escaping but we were not really escaping because we were going out into loneliness. At least at the nursing home there were other people who had similar experiences and understood what we were doing. But now we were all alone.

BLOOM: What did you learn about yourself while writing the book?

Akhil Sharma: I think I learned most of all I have to love my parents for who they are. And the other thing is I have to take care of myself and my first loyalty needs to be to my own happiness.

BLOOM: What do you hope people who haven’t experienced the world of severe disability take from the book?

Akhil Sharma: Until someone you love has a stroke, and suddenly you’re in that world. I think most people will experience something like this. I think what they gain from any fiction is that it takes away the loneliness and sheds light as to what you need. That this is okay. That you’re going to behave badly. That you’re going to have weird thoughts. That it’s going to be okay. 

Photo by Bill Miller