In her last months she was so tired, a fatigue that taught me everything I needed to know about fatigue. In truth, my early responses, when she said “I’m so tired, all I want to do is sleep” were terribly unhelpful. I thought I knew what it was like to be tired all the time, actually in the throes of recurrent depressions, I did know. But Ede had never before experienced fatigue as a symptom. For her entire life, nearly 80 years, she woke early and never napped. Indeed, as she grew older, she seemed to need less sleep. Until the cancer, her energy seemed legend. Until the cancer. So I really didn’t get it. Would tell her it was ok to be tired, ok to lie down, ok to rest. As if I knew.
Then one day, getting out of the shower, as I was helping to dry her hair, she said, in a uncharacteristically quiet, almost offhand voice: You don’t really have to shampoo twice, do you? I knew exactly what she meant. Although in reality, instructions have changed. Decades ago, old directions on glass shampoo bottles read: shampoo. rinse. shampoo again. rinse again.
There was a lost feeling, a sadness. All these years, I thought, she was following old directions, but now that she is so tired, she must question what is truly necessary. I thought about the history of hair washing, although I certainly don’t claim expertise. But I do remember perching on the tall yellow step-stool with a towel around my neck, being tipped backwards, head lowered, my mom or my aunt washing my hair in the kitchen sink. As much as I hated it, once a week, I couldn’t get out of it. And I had lots of hair. And she shampooed twice, rinsed twice. There was a time before showers, when bathing, shampooing, hygiene, the whole shebang, was just a different set of rules. There was a time, during my lifetime, that you didn’t wash your hair if you had a cold, or were on your period. Ede told me that in her teenage years, they called having your period, falling off the roof. I can only guess that the phrase was so obscure so that it would forever remain obscure. A life in which one could not imagine seeing ads for tampons on television. A time when there weren’t televisions, tampons or showers.
These thoughts, as I shampoo my inch-long wash-and-wear hair pretty much every day (shampoo once, rinse once), converge: my mom dying a bit each day; me at six getting my hair washed in the kitchen sink; images of my mom and her sisters as teenagers whispering about their periods; me drying her hair when she was too tired to do it herself. I am grateful for the images, the memories, the shuffled meanings. I am grateful for the lesson.
If someone, a patient, a family member, anyone, tells you that she is tired, very tired, listen. It is a symptom. Like pain. For some, it’s the most horrible symptom of all. Life is fleeing, and here you are, unable to stay awake to watch. And all the rules suddenly must change.