On your way to the main door of the hospital, you walk down a sidewalk that is bordered by shrubs and grasses and flowers. Eight weeks ago, when I first began coming here daily, I was consumed with gratitude for these elements of nature. The flowers at that time were almost aggressive in their beauty – saturated shades of pink and purple and yellow – and the tall grasses waved their bright green stalks. My favorite was a plant called alyssum that produces tiny white flowers that emit an incredible, haunting scent. That glorious summertime smell would hit your nose when you had almost reached the end of the sidewalk, like a goodbye you could take with you.
Today I arrived to notice that the landscaping has been cleared for winter. There are no brilliant flowers, no perfume that hangs on the air. Only the tall grasses remain with their now yellow shoots dancing in the wind. The rest is dirt, the flowers having been wrenched out by the roots to become compost, making way for a new season. There are a thousand ways to tell time.
My sister is shrinking. She isn’t eating as much – some days not at all – and the frenetic thoughts that sometimes consume her brain burn enough calories for all of us. And when I stand next to her now, I am taller where she used to be the tallest one of us, rising like an oak when she stood. She takes small steps and sways as we pace between the two sets of locked doors in the BICU (Behavioral Intensive Care Unit) and today we only spoke in whispers. Everything is getting smaller.
It’s hard to say because it seems so drastic, but in a sense I feel like we’re losing her. She’s withdrawn and startles easily. Her nonstop talking has slowed. Now she mutters under her breath or speaks only in short phrases. Her mouth is dry from medication so her lips stick and only open slightly when she talks. Her eyes are small slits and her face is swollen. She has told everyone to stop addressing her by name.
Even so, you never lose hope. Really – how could you? – because to do so would be acknowledging that this is permanent, chronic and that idea is unacceptable. We’re trying a new medication and that takes time to work. We’re working on decreasing stimuli and asking staff to be attentive to her sensory needs. We stay up at night staring at the ceiling wondering what we’re missing in this puzzle – is there a piece that could change everything? We visit her when she’ll have us and I tell the aides things like, she doesn’t like green beans, and her cat’s name is Lilly, and they smile at me sympathetically and nod. I know I say these things more for myself than for anyone else, but it’s all I have to do right now. We just keep waiting.
And the world spins madly on.