Why losing a sibling with learning difficulties is not a blessing in disguise

Gina Demillo Wagner's brother died in his early 40s and people assumed, because of his condition, she'd feel like a weight had finally been lifted from her shoulders. Instead, she felt like any other sister would: immediate, unmistakable sadness

'I realised soon after Alan’s death that I’d been clinging to a sliver of hope that he would get better someday' (Getty/iStock)

When my brother Alan died suddenly at age 43, I received the usual condolences, and a few unusual ones. One friend texted, “So glad this weight has been lifted from your shoulders.” Another simply hugged me and said, “I hope you finally have some peace.”

These friends assumed my brother’s death would bring some relief, that losing him at a young age might be a blessing in disguise.

On a deeper level, their messages sought to make sense of a loss that didn’t fall into any of the usual categories. Alan was not a typical brother, and ours was not a typical sibling relationship. My relationship with my brother was an ambivalent one – full of love, fear, empathy, embarrassment, gratitude and resentment. Because of this, the loss was somehow different, and perhaps easier, they surmised.

My brother was a 5 year old in a grown man’s body. He was born with a genetic abnormality that leads to cognitive delays, hyperphagia (insatiable hunger), slurred speech, and moods that veer unexpectedly from loving to violent.

It wasn’t until his 30s that this was diagnosed as Prader-Willi syndrome, an intellectual disability caused by a genetic error on chromosome 15. My mother suspected he had other issues as well. He was born breech, his umbilical cord wrapped around his neck. She thinks perhaps he suffered brain damage this way. He was a floppy baby, she said. He didn’t cry.

Alan required constant supervision. Left alone, he would eat until he vomited. He’d eat food from the bin. He’d cut himself while trying to pry aluminium cans open with a steak knife. He started fires on the cooker.

This meant that despite my being three years younger, I quickly surpassed him. I became the older sibling. The “normal” one. I was the one people pointed to as they consoled my mother. At least you have this perfect little girl.

Back in the ‘70s, having a disabled child was a disease, and I was the cure. Later, my parents had another typical child, my younger brother Andrew, but even that didn’t stop their grief. Dad moved out when I was 5.

My mother never recovered. She suffered profound depression. From a very young age, I stepped in and helped parent Alan, which means I also bore the brunt of his violent outbursts. He never understood why his younger sister was left in charge of him. So, if I told him to brush his teeth or if I caught him bingeing on food, he would respond by punching me and slamming my head into a wall, or he’d grab my hair and drag me across the floor. Afterward, seeing me cowering and bleeding, he’d cry and apologise. He never meant to hurt me. His mind just didn’t know how to control his body.

There were peaceful times too. When my mother was away, I’d tuck Alan into bed, kiss him on the forehead and listen to him talk about his favourite movies until he drifted to sleep. Whenever he’d meet someone new, he’d ask them their shoe size and phone number and commit it to memory. We often caught him calling new friends, sometimes in the middle of the night.

He was also something of a dog whisperer. Watching him cradle a puppy, you’d never guess he was capable of hurting anyone. He might have made a career out of rescuing animals if he was able. This was the paradox: When he wasn’t violent, Alan was one of the most loving people I’ve ever known.

When Alan died, I did not feel relief. I felt immediate, unmistakable sadness. I grieved not only for the loss of my brother, but also for the loss of any possibility for a better life for him or a closer relationship for us.

The special needs landscape has changed a lot since the ‘70s and ‘80s, when Alan and I were kids. Back then, there were few resources to address his needs and stigma around having a special needs family member. My mother struggled, in part, because she believed she was utterly alone.

Today, about 1 in 6 kids in the United States has a developmental disability, according to the Centers for Disease Control and Prevention. There are services and support networks that simply didn’t exist when Alan and I were growing up.

I’ve often wondered if my family might have fared better if we had had the resources that are available today. I realised soon after Alan’s death that I’d been clinging to a sliver of hope that Alan would get better someday. I hoped there was still time to untangle the mixed emotions I felt towards him, that we could enjoy each other as adults in a way we couldn’t as children.

My relationship with Alan was tumultuous at best, terrifying at worst. Did I love my brother? Yes, deeply. Did I fantasize about how might life be without his condition, without the constant dark cloud of worry and fear? Yes, for as long as I can remember.

I recall a grade-school teacher telling me what a lucky little girl I was: “Your brother is special. You are so lucky to have him. He will teach you things that no other brother can.” At the time, those words stung

Lucky? I felt so very unlucky to be Alan’s sister. I felt small and unseen.

Looking back, I know this teacher was right. Alan taught me that humans are imperfect, vulnerable beings. Watching the way people behaved around my brother, I understood there is incredible kindness and unimaginable cruelty in the world. Thanks to Alan, I gained patience, empathy, diplomacy, maturity and compassion.

Alan was my tormentor, but he was also my big brother. The profound love I felt towards him didn’t cancel out his violence. But neither did the abuse cancel out the love. I realised both could exist simultaneously.

Through having my own kids and getting to know other families, I came to see that even at their best, siblings are rivals, competing for their parents’ affection, time and approval. In all the ways the relationship between Alan and me was different – more complicated, more extreme – we lived with an ambivalence that’s present in many families. I mourned the loss of my brother just as anyone would mourn a sibling, because in some respects, we were just like everyone else.

© New York Times