(Dis)ability

To my aunt.

I couldn't smell aniseed for years after the day we baked those cookies. But it was you who taught me that a disability can be rather enriching. My sudden disability to handle aniseed smell was forever locked with that funny day. The cookies stunk so badly after aniseed my brothers ran out to the garden to gulp for fresh air. It made them feel sick. Hah, weak boys. (I didn't capitulate before I had eaten at least one cookie.)

I also remember that little neighbour-girl wanting to call you mum. Epilepsy had stripped anything artificial from your live, making you incredibly real, so present. You traded the car and the computer for the bicycle and real human contact instead.

I almost want to call your disability a blessing, as you often were so overflowing with joy (and a little mischief, too, sometimes).  

But I can't. Because although making you an even richer, more powerful and wonderful person, it also took you away from us.

I never realized the small signs when I was young, but I now understand them in the retrospective. The cushion placed at the toilet sink. The story you told us how you once had “fallen asleep” on the toilet and woke up curled up on the small space provided in front of it. The removal of the cushion, because you did not want to be reminded every single day; of the danger lurking inside yourself, just around the corner of your brain.

When you died your husband wasn't home. Neither of you had thought of him going away for a few days as a problem. I still don't know if your daughter found you when you were dead or was even present when you died. God! This is the disability I am truly scared of: The disability to help. The disability to help someone with a disability because I freaking know nothing about it. I know nothing about how to prevent you from choking on your own tongue because you never told me.

I don't mean to be rude or to intrude into your privacy. But for the love of god: If there is anything I might need to know to save your live, fucking tell me!

I would like to have part in your live with a disability. I would like to learn the good and the bad parts about it. I am old enough to be told the truth, you know. And you are old enough to be telling it.