Sometimes my heart aches for my sister

A few times over the past week, my sister has opened her phone conversations with me with mention of either people talking about eyes, or that she was “born that way.” I know she’s got some new staff in her supported living program, and that she’s been part of some of the meetings during which I imagine my parents have tried to explain to these new people what Lily’s reality is like. My heart sinks when I consider that it might be a reaction she’s getting from people in public. She’s clearly upset by it, if she’s telling me about it. I am at a loss, though, as to how to comfort her. It’s hard to help her find the words to express her emotions, and therefore hard to know if she just needs to vent or wants help finding a solution of some sort.

It’s been a rough week for her in other ways, too. When I called her on Saturday, she replied to my greeting by saying, “Ellie, I’m crying.” Her voice definitely conveyed that she had been struggling with tears before I called. My immediate suspicion was that she was experiencing emotional upheaval before starting her period, which was bolstered by my mom telling me that poor Lily was also experiencing an acne breakout. Sure enough, on Tuesday, I was proven correct.

Why should this tug at me so much, when it’s a normal part of human biology? Well, remember: Lily entered puberty at a typical age, for current American society, but only experienced menstruation a couple of times during that first year. Mostly, her epilepsy, which had been pretty well controlled, erupted in frequent grand mal episodes. For the last 15 or so years, she hasn’t really had periods – but she’s had a huge number of seizures, of several kinds and varying magnitudes. My mom wonders if her newest anticonvulsants – which are, happily, working pretty well – have less of a suppressive effect on her hormones. Thus, Lily is currently only just learning to navigate her own body’s regular fluxes. Some of that includes distressing feelings, like the sensation of having wet her pants without having done so, or cramps. (I seriously hope that she is spared the migraines that typically hit me as I start my period!)

For now, I’m calling my sister more often, to try to cheer her up, or at least to distract her. I’ll probably send her a care package, too – chocolate is something we both love! Hopefully we’ll figure out how to help her deal with this change to her life soon.


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