For Amy Rose

I wanted to write a blog about how lately my father has been a jerk – that he denigrates my passions and my opinions, and how badly it hurts me that he doesn’t care about autism and implicitly accuses me of being selfish for doing so. That he told me that since autism isn’t deadly, I ought to focus my energies on finding a cure for leukemia, or finding out why people get strokes. But I’m not going to, because airing my family’s dirty laundry (any more than I just did) on a blog is rude, and because that’s not what today should be about.

Today, in my life, is about Amy.

She was my cousin, and on this day last year, she passed away, from complications from leukemia, at age 33. She’s survived by her husband Alistair and her mom and dad, my aunt Jill and her husband Tom. I miss her every day.

We didn’t talk as much as we could have, which is an action I infinitely regret now. When we did talk, she was always very patient with me; Amy understood that I wasn’t like her extroverted, carpe-diem personality, and she respected that. But I never quite got over my shyness, my near-awe of her – I kept thinking I’d be bothering her, that she had better things to do than hear her quiet little cousin’s day to day. I had no idea what the autism spectrum even was at the time, but everyone’s always known that I’m Not Like the Others. But Amy included me when I was in a position to let her. And every day I remember that gives me a little more push to talk to people. I’m never going to be the life of the party, but it helps to remind me that the risk may be worth the reward.

I only really remember ‘meeting’ her when I was about fifteen, at our family reunions in South Carolina. My father has a very big family – eight kids, and all the attendant children, spouses and step-everythings. She was three years or so older than me, so she was very adult and mysterious and With It. She smoked cigarettes, which was forbidden and dangerous and I judged her slightly for it, in my infinite teenage wisdom. But when our reunions happened in later years, she always made a point of talking to me, of including me, of inviting me to go tanning (“Put on lotion!” she always told me, even when she was breaking out the baby oil) in the South Carolina sun. She made a very uncool teenage me feel very cool when I was with her.

She struggled with smoking and drinking at one point in her life, but eventually she quit both of them, and when I heard the news from my father, I remember being relieved. Not just happy, but relieved – she would be safer now. And when I saw her next – our family reunions had moved to California along with my grandparents – I remember being absolutely astonished when she had noticeably put on weight. She wasn’t just chunky; she was full on fat like me. I immediately felt sympathy and expected her to hide in the background, as I would do. As I still do. But that wasn’t how Amy rolled. She kept right on being herself – out there, smiley, laughing, walking out in a bathing suit and shorts like she still owned the world. She even had a boyfriend – later her husband – who clearly hung on her every word.

I can’t put into words what that meant to me. What it still does. Amy was and is the example, the living fucking proof that if you’re fat, it doesn’t matter. You don’t have to hide; you don’t have to write off your social life or your self worth. I still think of her when I’m scared to wear something. Usually I wind up putting it on and walking out the door with my Nigella face on. I gained confidence from Amy’s example that I still try to keep today. Every time I let the inner Gaga out, I remember her.

I’m ashamed to admit that I don’t remember what Amy was doing with her life right before her diagnosis. All I remember is the news from my dad on a phone call. And then I didn’t hear anything for months, and then between about Thanksgiving and this time last year, she just … slipped. Not faded, but laid down. I wasn’t there for the treatments – she lived in California and at the time, I lived in Houston – but I’m sure there were good days and bad. I could never fault anyone for their emotions, least of all faced with something like that.

A lit candle flame above a yellow candle, on a black background.

Image description: A lit candle flame above a yellow candle, on a black background.

That said, I don’t want to whitewash anybody, or be politically correct – one of the things I liked best about Amy was her humor, and her ability to poke fun at people, but sometimes that wasn’t there. It always upsets me when people die and they’re made saints – Nelson Mandela supported the Castro and Qaddafi regimes, but he was still a good man with extraordinary courage and a heart in the right place. Amy could be rude, and she could be selfish, like all of us. Sometimes she’d be shockingly impolite in a way that my mom would have smacked me on the back of the head for. [joke] And she did root for the San Jose Sharks. [/joke]

The first few days of December were grim, and then on this morning last year, my dad called and told me she was gone. Just like that. All the usual cliches applied: that she didn’t suffer, that she wasn’t in any pain. I devoutly hope those were true. She didn’t deserve this, not any of it. Neither did my aunt, her husband, my grandmother, my father, the rest of my family who loved her. I was angry. I’m still angry. And it’s why I write. Because we ‘weren’t close’. Because I didn’t live in the same state, because I didn’t talk to her every day, and yet she changed my life and I never got to say thank you.

I hope she knew. It’s all I can do.

Well. I can live as full a life as I can. I can be fabulous. I can do my best to sail through life with my Nigella face on, and hopefully come anywhere near as close to her strength and her heart and spirit.

I try to come up with a snappy line to end my posts, but there’s nothing snappy about this. I miss her. I think I always will. But I’m grateful that I got to know her at all.


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