Not alone
Posted in Uncategorized on 09/13/2009 03:08 pm by LaurelIt’s weird how your whole life can get consumed by caring for an illness. And it’s not the kind of thing other people can really understand, unless they’ve been through it themselves. Last Christmas I didn’t even bother to write anything beyond signing our names on the cards. How do you condense months of fear and worry and sleepless nights into a cheery sentence that would do for a Christmas greeting?
And then the annual newsletters started coming in from all our old friends who have been sharing this child-rearing experience, telling about college honors and studying abroad and boyfriends and plans, and I realized that all I could write about was the pain of sending my daughter off to school and within a month finding out she was deathly ill….doctor’s visits, lab tests, late-night phone calls and learning about all kinds of illnesses I never even thought of before. I felt like I had been divorced from the world of “normal” and landed in a Twilight Zone. Friends are sympathetic, but no one really wants to hear it or help you live it long-term. I on the other hand, have to learn this new language and find my way around this foreign land, and learn to survive here.
The other night I had a nightmare about losing track of Esther when we were out running around and doing errands. I was focusing on what I had to do and forgot all about her; when I was driving home I suddenly realized she should be with me, but she wasn’t and I had no idea where she was. I woke up in a panic…looking at it now I can see how that responsibility drives me, the fear of losing vigilance even for a moment and how that might affect her health.
Esther has expressed similar thoughts. The trauma of what she was going through at school revealed who her friends really were. (Some didn’t want to deal with the stress and cut her loose.) But as wonderful as some of her friends were in that time, they could always leave her room and go back to their own lives– there is a loneliness in realizing that she cannot lay it down, ever, or forget about it, or take a break from it. And she worries that she is not taking care of herself well enough, not doing a good enough job. That constant weight of responsibility is hard for people to “get.”
Most of the time we put on a happy face and diminish it, because that’s what makes people comfortable. We carry our burdens in private, and allow only a few closer friends to know the whole story. That is what life requires, but sometimes it feels very lonely. The other day a friend sent me “The Spoon Theory,” after I had an uncharacteristic breakdown– I was astounded.
(http://www.butyoudontlooksick.com/the_spoon_theory/. From there you can click on the story to read.) Christine Miserandino has lupus, which is very different and much more severe than Esther’s illness, but she uses a tremendous analogy to express what it is like to live with an illness/disability. She puts into words all those things that other people can not understand unless they’ve been there themselves or walked through it with a loved one.
The best part to me was that my friend “got it.”
