Fitting Together the Puzzle Pieces

It’s always interesting to me when we interview sibs who are both incredibly positive and reflectively negative about their experiences growing up with someone who has a developmental disability. I think something I have been looking for this whole trip has been the perfect combination of solidified good and bad. I think on our last day of interviewing, in LA, I found a woman who exemplifies these traits.

We spoke with Liz in LA about her experiences growing up with her brother who is two years younger than she is and on the autism spectrum. She says she wouldn’t describe him as high functioning, but he is verbal, has had part-time jobs, and has a girlfriend.

We’ve found that the best word to describe the sibling relationship is usually just “complicated” and we talked a lot about that with Liz. “There are a lot of mixed feelings…Complicated is probably the best word for it.”

Growing up, she played many different roles in her family. She was the protective, motherly role but also the role of the sister who had a completely separate life from her brother at home. Liz’ reflection on her role in the family was intriguing and very self-reflective. Her parents consistently told her throughut her childhood, “you are his sister, not his mother.” The issue was, Liz didn’t know how to be a sister to her brother.

“I don’t know how to be his sister. I know how to be his parent because what that meant was to take care of him.” She told us bravely about her confusions about her role in the family because she really didn’t understand what being a brother to hers was supposed to look like, as opposed to a parental role that she could easily emulate from her parent’s actions. “What do brothers and sisters do? I have no clue.”

For example, Liz opened up to us about an intense memory she has from elementary school. She told us that she once told her brother that she loves him. And he remained silent. After a while, she asked him if he knew what love meant and he told her ‘no.’ Liz took this moment with her for the rest of her life. . “As a child, that was just profound for me. I am going to grow up making sure that people feel love.” Aside from proving to be the best friend she could possibly be to all of her friends (and she still has friends from childhood and college, to prove her point), she took her brother’s lesson with her in her professional career. Liz is a casting director and she told of the direct impact her brother has on her work. It’s a “great way to connect with people daily and to help people realize their dreams and realize what they want to be doing…the audition is always important to me to make it a safe space…even if they don’t get the job, they go home knowing that they did their job today.” She also spoke on the arts world as a whole, a world she has been a part of since childhood.

The theatre is “a place where there are all these people are feeling things and acting and doing theatre and traveling around the world and that saved my life as far as being able to deal with my insecurities and shame and getting so deep into ‘what are we going to do about my brother?’.” She talked with great warmth about how impactful the world of performance has been on her life. On sibs: “We don’t have that place to freely express ourselves. We don’t have a place to say ‘I hate this. This is embarrassing. I am full of shame. I don’t want to carry this around anymore…I feel so guilty for wanting to be free of this.’”

“When I think about the things I love the most about myself, they are directly contributed to [my brother]. I am absolutely a people person” She went on to speak about her job. “I’m a cheerleader, I’m an interpreter, and all of that is directly because there is this person in my life that I had such a hard time reaching. That was my focus. I am going to be able to reach people. I am going to be articulate. I am going to talk to people about their feelings because here is a person that I can’t really talk to.”

For me, the most touching and inspiring parts of Liz’ interview were when she spoke, eloquently and passionately, about how difficult life with her brother was and is and how awful she feels about feeling that way, something I truly resonated with. “When he is easy, it’s easy to be with him. And then there’s the other side,” the side where he is not an uncle or a brother-in-law, but a brother. A brother who has embarrassed her, given her anxiety about both of their futures, and pushed her to extreme limits emotionally. She told us that as a child, she struggled to talk about him. “It’s not even in our make up to make people feel bad or uncomfortable,” and she didn’t want to “burden” anyone with the unnecessary, especially since she was “fine,” as we have seen many other sibs describe themselves. “I know what he is doing… but I don’t know how he is doing”. She said that she feels a lot of guilt about the disconnect but is not sure how or if she wants to change that. “I should be doing more but do I want to be doing more? It’s always challenging.” She told us that she once heard someone liken having a disabled sibling to having a superpower. The superpower? Being able to read people. “What is the word that it is? It’s just so raw. It’s such a fundamental thing. A part of your growing up, this person”

I’ll finish off this long post with our last portion of our conversation with Liz. We always end each interview by asking the interviewee to pose a question to any other, ever. Liz’ question was unique. “What was your darkest thought?” Though I have suppressed over and over the reality that my sister has affected me in more ways than I can count, Liz’ last question assuaged my own feelings and the feelings of many sibs that we have spoken with about the dichotomy between a sibling relationship and the actualities that are bequeathed within it.

Ellie

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