Memories of My Sister – by Nicholas Bogod

My sister Elizabeth:  

I was not as close to my sister as I should have been. The fault was mine. I was too busy with work, my own loves, my own busy life to give her the brother she desired. I gave her monetary things. My old iPhone. Financial support for therapies. The occasional phone call. A pittance really. The odd incidental visit when seeing Mom and Dad. But not the brother she wanted. I must own and carry that with me.

She was a sweet child. Loving. Easy going. If you knew her only as an adult and believe that the wounded young woman was all of her you diminish her. She started out with a pure, joyful spirit. We were far apart in age. She was 6 when I was a long haired wayward teen of 15. But my friends and I loved her. I taught her that the answer to the question “who is the best band in the world?” was Pink Floyd. I was a big fan of the band Black Sabbath. She called it “monster music” but was not afraid of it. As an expression of excitement she came up with the word “fukinaruckus” spontaneously to our vast amusement. She would come downstairs and visit with my sketchy friends and I fearlessly. She would give everyone a kiss goodbye when she left. She started out sweet, unselfconscious and unencumbered.

The hard lessons began later. In Elementary and High School she struggled. She was a “resource room” kid. Pulled out of regular classes – a great way to ensure an already socially struggling child is ostracized and stigmatized. She was poor at reading others social nuances and didn’t quite fit in – the last thing you want as a tween or teen. When she struggled in school she had assessments and therapists and doting parents who would do anything to help her – but sometimes no amount of help can make up for social isolation, relentless bullying, and a constant sense of unworthiness and failure. As we can recall, fitting in at that age is imperative to social survival – she simply didn’t. She developed Crohn’s disease, a painful and debilitating intestinal condition that forced her to run to the bathroom frequently. More stigma and an illness caused or worsened by stress. It is hard to imagine how much stress she was under.

As an adult she struggled for independence, for acceptance, for recognition, for respect. Nevertheless, she had many successes. Perhaps 15 years ago or more she asked me to help her with some HTML code as she wanted to make a website. I showed her the very little I knew and from that meagre beginning she taught herself web site creation culminating in her LD Pride Website, providing information and support to people with Learning Disabilities and  sparking her push for more recognition for individuals with “Invisible Disabilities”. She also hosted a weekly supportive chat room on the site – her first involvement with peer support. The site won many online awards and she ultimately sold it to a US buyer with the agreement that the content would be maintained. You can still see it at LDPride.net today where she is still listed with a photo as the site’s founder and you can follow a link to her story of overcoming Learning Disabilities. Others can talk more intimately of her more recent work in creating the Victoria Invisible Disabilities Association and her work with BCSS and New Lights but she had many other successes. However, she also experienced many setbacks and disappointments… and we are our own worst critics. Years of success can be damaged by what seem from the outside to be small failures, especially if you are fragile and your self-esteem is tentative at best.

Mom and dad did everything and more than could be asked of parents. We actually told them to do less, they did so much. They supported her endlessly at great personal sacrifice. No holidays alone for decades for fear of the very event that has us gathered today. But your family are expected to love you and unfortunately when much of the world outside of your family rejects and diminishes you, you start to internalize their beliefs at great personal cost.

For me, my sister died of a broken heart. Made more and more fragile by her inability to find acceptance and respect she began to believe her critics. She wrote that she took her life because she was a “bad person”. I couldn’t disagree more. She was, in truth, a very good person. She had needs but was never manipulative. She gave much and received little. She was humble, struggling to take pride even in her many great accomplishments. She was a person who had challenges but who often rose high above them to create beautiful poetry, skilled works of art, and to be the impetus behind entire programs of support for those in need.

I hope that her memory, and her legacy, will live on in all our thoughts and in the continuation of her life’s work, which was at its core, about helping others. Rest in peace my dear Elizabeth.

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