The light from a gray day in northwest Wisconsin is fading. Through the window in the cabin bedroom, the color is deepening from one adjacent Pantone shade to another, like someone is flipping through a color wheel. Soon I’ll see the reflection of what’s in the room rather than the trunks of the trees outside it.
I’ve been in bed all day. My energy bank account is at zero. Actually, it’s less than zero. I’m in debt. I’ve been reminding myself to take deep, slow breaths, and with each breath imagining a shiny quarter dropping with a plink into a piggy bank.
Earlier this afternoon, my husband stopped in the bedroom doorway and asked if I needed anything. After a moment, I shook my head, only because I couldn’t process his question quickly enough to give him an answer before he turned away.
If I had been able to think more quickly, what would I have answered?
Do I need anything?
Yes. I need someone to bring me a bowl of warm food that’s easy to swallow.
Do I need anything?
Yes. I need a friend or a family member or someone to ask me, how was today?
Do I need anything?
Yes. I need scientists to figure out the cause of this illness and discover a foolproof cure. I need them to have done that twenty years ago. I need all the doctors everywhere to be as educated about ME/CFS as they are about heart disease. Until they find a cure, I need all the doctors everywhere to have good ideas about how to manage this illness.
Do I need anything?
Yes. I need my friends to invite me to parties even if they’re probably right that I won’t be able to go. I need people to ring me up and tell me the latest news so I don’t feel so embarrassingly insignificant and out of the loop. I need my community to remember that I’m here and that I’m ill, even though they hardly ever see me and when they do I look fine.
Do I need anything?
Yes. I need the people from whom I’m asking these things to know that it’s truly okay that they don’t know what I need, because this illness is dismally uncharted territory for all of us. There’s no way they could know, and I do, truly, understand and accept that. But I need us to figure out what I need together, with no guilt, no blame, no recrimination, no apologies.
In short, I need what every human being on the planet—ill or well—needs: to be cherished as part of a loving community, and to be accompanied all our days.
Photo by zengxiao lin on Unsplash