Friday, January 22, 2016

Sibling Bereavement

When someone dies, the parents or the spouse are the ones who seem to attract the most sympathy and support, which is what they deserve. But I hope also that the siblings get their support, too. Even if they seem to not understand or even if they seem like they are not affected. They will understand in their own way and grieve in their own way. And there are organizations that can help by giving information and a place to connect with peers who can uniquely identify with what they are going through.


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Below is my story. It does get a bit long but bare with me. I cannot talk about my loss without talking about my brother.

I lost my older brother, my only sibling in my teens. Or, I should say my brother died when he was 22 years old. I correct myself a lot because the former statement seems like it’s about me when my brother was the one affected.

Anyway, he was several years older then me. But …
  • He was my best friend - we lived in few different countries growing up. He was my one constant companion. Despite the age and gender differences, I have tons of memories playing together. Once we even boiled leaves from a backyard tree while my mother took a nap (I remember it tasted horrible!).
  • He was a kind brother
    • He didn’t get annoyed with me tagging along and wanting to do whatever he did (there are a lot of photos in which I sit next to him and am drawing or sewing as he does; he let me tag along to school for summer vacation exercises)
    • He was patient when I went into tamper tantrums (the only time he really got angry at me was when I got so frustrated losing a card game and started hitting and kicking him)
    • He pretty much helped me with all the craft projects that came with a monthly kid’s magazine that I couldn’t do.
    • He always teased me and insisted that he should get twice the amount of snacks since he was bigger. But he never actually asserted his rights. I always split them equally between us. I only gave him one extra if there were odd numbers of things.
  • I was proud of him in many ways 
    • He was tall (close to 6 foot while I was less than 5 foot tall); 
    • He was athletic (played tennis well and skied among other things)
    • He was a class leader
    • He studied hard
  • He was the best teacher in my family (my mother was too impatient; my father, if I asked him a level 5 or 8 problem, he always had to start explaining from level 1 taking forever)
  • He was the emotional pillar of the family. He was my protector. He made part of the environment in which I could be myself freely and safely without any constraints. (My father being too busy and pretty much non-existent in our day-to-day lives. Even my mother relied on him at times)

I might have idolized him after his death but he was indeed a good person. And I couldn’t have had a better brother even if I came up with a list of characters that I wanted in one. He was the prefect brother for me.

He was totally ‘normal’ growing up. But when he turned 18, things started going wrong. At first he complained that he couldn’t see well. He got glasses but that did not completely solve the problem. He ended up getting bounced from one medical speciality to another, till he landed in neurology. There he was diagnosed with a type of dystrophy. He was also told that he will deteriorate and at most have only 3 three years to live.

It was a quick decline from there: he started having trouble walking straight; having trouble climbing stairs; having trouble writing on a straight line; he lost balance (fell once on train tracks); started crawling; got bed-ridden; became unable to construct coherent words or chew well; and the day before he died, he was no longer able to chew his food at all. He did not last three years.

My mother took care of him at home till the very end with advise and help from a visiting nurse and later a bathing company who brought a tub and helped his stiff body into it. I was at a boarding school then but came home frequently on weekends. I remember only once being at my brother’s bedside when my mother had an engagement that she could not cancel. 
I’m pretty sure, I was in denial that he was sick and failing. It probably didn’t help that I was losing touch with my emotions (that process was mentioned in a different blog post), either.

His death didn’t sink in. I thought I should be feeling sad more than I actually felt said. At his funeral I told my brother in my mind that I will not think of his death because it will make me sad. And I promised to him that now I, in my brother’s place, will ‘take care’ of my mother who was in deep grief.

My life went on as if nothing happened. I told none of my friends. I hadn’t even told them about his illness. Since my family home was far away from school, I’ve never invited anyone home. None of my friends knew my brother face-to-face. And I didn’t want pity. I didn’t want to make my friends uncomfortable.



One day, more than a year after my brother’s death, I was at home alone. I was listening to a song and along came the lyrics ‘we will meet again someday, somewhere.’ And it suddenly hit me. I realized that I was never going to see my brother again. Tears gushed out and I was knocking everything from the desk and hurtling anything within reach at the floor and walls.

It was as if, until then, I was acting on a stage with props unknowingly. And when reality hit me, I was standing alone in the middle of rubbles.

I was in despair. I was angry that he had to thus suffer. I was angry at the world, the injustice for letting him die while bad people, ‘less worthy’ people lived on. I was angry at myself for not doing anything for him when he needed the help, despite all he had done for me. I felt survivor’s guilt: I, the lesser one, less smarter, less athletic, less reliable should have gone instead of my brother. I was angry that he was torn away from me and I had to thus suffer. 

But I kept all that emotions to myself. My mother was the one who lost a child, a deeper loss. When she doesn’t express that much grief often how can I? The despair was felt so dark and deep that I didn’t think any of my friends could deal with it if I confessed. In the end, the pain and anger was too great to carry on, I just wanted to end my life, to follow my brother. Clearly life has not much meaning. A good person like my brother can just die one day and nothing happens, nothing changes, the world goes on.

Ultimately, my self-preservation instincts were too strong. I didn’t want my mother to experience another child’s death either.

I was in college by then. I had vague future plans, or more like fuzzy dreams. But those now felt totally meaningless fluff. I wondered what I can do to live until the day I can go to my brother. Nursing, was the answer I came up with.

It probably had to do with the fact that I hardly helped with his care and felt really guilty. I wanted to make amends by helping others. Another big incentive: after the diagnosis my gentle brother became sullen, especially among family members. He was probably angry that he was dealt a bad card. I also think, and it is most likely that the disease eventually eroded his thoughts. From then on, I never saw him smile except just once. 

This was soon after the diagnosis. He was in a hospital for about a month. Either the doctor wanted to do some more tests or was trying to see if they can slow the symptoms, I just don’t know. One day when I was home from the boarding school, my mother took me to visit him in the hospital. As we went up the stairs I caught sight of my brother and he was smiling. It was so shocking that the scene burnt itself onto the back of my eyelids forever. What he was doing at the time: having a conversation with a nurse. And I realized that nurses are always there. Even when there is not much a doctor can do, a nurse can stay with the patient and support a person to the end of life. That nurse was able to make my brother smile. I wanted to be that nurse. I wanted to be able to do that to someone since I couldn’t do it for my brother.

Until then, I’ve never thought of going into the medical field. No one in my family that I knew was. I didn’t think that math and science were my thing. I liked history and reading books. But that was that. I changed my course. I went back to studying high school math and science. My only wish was that I would do good as a nurse and that if/when I see my brother again, he will great me with a smile, a word of acknowledgement at what I’ve done. 

It has been years since then, and I still hope so.

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Sorry for my story getting so long. Thank you for letting me write this all out. I’ve never been able to put it all into words like this. But the bottom line is a child can grieve about a sibling in their own way. Their age and understanding, sibling relationship, circumstances of death, etc. will affect how they uniquely grieve. They might need a hand to get over it.

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