On being a touchstone

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One thing about living with a physical difference or disability is the uniqueness within your own community that makes you well known.

For the most part I had a pretty okay time of it at school. There was the odd bullying incident now and again I guess but I was pretty much left to simply exist in the school environment. Naturally, being the only student with dwarfism in the school people quickly learned my name simply because I stood out. Standing out makes you memorable so it was easy for the student body to quickly hear my name and remember it. Students chose to be friendly and would say hello whenever I passed by them. I'd guess that I'd possibly say hello to over 100 kids a day - most of whom I didn't know.

Looking back, it was nice...and I do remember being nice to people in return. Nobody really cared that I didn't remember their names as far as I know. As long as I smiled and said hello we were all happy.

Of course, there's a ying and yang to everything and sometimes being the one to be remembered was a weight to be borne. I think about this a lot actually and I've come to realise that I carry an element of guilt as a result of the notoriety that comes with being easily recognised and known.

I am the eldest of seven siblings and the only one with achondroplasia. When we went to family functions and reunions, my siblings and I would get out of the car and we'd hear the relatives say, "Oh look, Leisa's here!" Although it was nice to be greeted I also felt hurt for my brothers and sisters because they were just as important as me. Didn't they deserve to receive an enthusiastic welcome too? Sometimes I would even feel guilt because I was getting special treatment and recognition which I neither asked for nor expected. I remember once I waited in the car until my siblings got out and joined the group; hoping that they'd have a chance to be greeted by the relatives as individuals rather than being known as Leisa's Brothers and Sisters. It didn't work. They told me later that no one even remembered their names. It was frustrating and made me sad. We all joke about it now but I do still feel the guilt that remains.

When my Pa's memories slowly eroded with his steadily advancing dementia I was one of the few people he remembered. When we would visit him at his care facility he would look around in confusion at us all, not even fully recognising my mother - his first born daughter. It was at that point I'd usually be brought forward.

"Look! Look! Here's Leisa. You remember Leisa don't you?"

His eyes would rest on me and he'd start to cry because he did remember...and then he would be able to connect my mother with me and he'd remember who she was. It was beautiful...but also a heavy burden for a teenager to bear. I felt and still feel, such guilt that I was the one he remembered.

Personally though, I do treasure that we had that connection -  he and I.

History repeated itself when Nanna - Pa's wife - was also diagnosed with Alzheimers and we again watched our loved one deteriorate and disappear before our eyes. Again, I have bittersweet memories of my last times with Nanna because the memory of me did remain in a small part of her conscience. I would watch as recognition flashed across her face and feel a sense of relief to be able to connect with her even though she was a shadow of her former (formidable) self. My last moments with her are especially precious, although I bear the memory of them with a lot of guilt because those experiences should have been my mothers and they weren't. I would gladly have given them to her if it were in my power.

I am learning to come to terms with how I feel about all this. I know the guilt is irrational because I neither asked for or expected the extra attention. Although I love the stage and can speak and present with confidence, I don't like the spotlight and a spotlight is exactly what seems to come along with being different. Still, I have learned to use the spotlight to advantage. Children stare at me, I smile. People tend to remember me so I want them to remember that I was kind, polite, intelligent and interested in them. Relatives from the extended family have said that I was the one that would speak to them and wouldn't be shy and that's why it was even easier to remember me. To be honest, I was doing what was expected of me. Reality was that I was just as shy as all my siblings and would have much prefered to be invisible and blending in with the gaggle of cousins.

I'm trying to come to terms with being a touchstone -  the one that holds the memories and the one that people connect to. I guess I should see it as an honour that was given to me without me ever asking for it.