I could not love, or look up to, a sister more than I do my cousin Amy. Aside from her intelligence, her immense sense of kindness and sense of the ridiculous, her love of books, cats, and baseball, she knows how to rappel down a cliff. A cliff. That she has climbed. With her fingers and toes. Her idea of fun is wilderness hiking and camping, even in the snow, even in Death Valley. Bugs, bears, trail mix, more bugs, being totally cool with pooping in the woods, all that. If there’s a guy where she lives in Berkeley, CA who hosts strangers for nude hot-tubbing in his backyard, she will have the key code. Yes, she took me.
Amy is also a Creative. Ballet/violin youth, art history at Stanford, house full of bohemian beauty, window boxes, art books and color. She is an amazing nature photographer.
But this description is the saddest thing in my life. For over a decade, Amy has been one of the Millions Missing, a person with ME/CFIDS. Most of that first paragraph isn’t true anymore: she can’t do those things. Or travel. Or see friends. Or leave the house a lot of days. Or be upright sometimes.
Here is how the #ME Action web site describes this illness that steals lives:
“Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.
In many parts of the world, it is commonly called Chronic Fatigue Syndrome.
There is no unified definition or diagnostic criteria for ME. Common symptoms include significant physical or mental fatigue, post-exertional malaise (a perverse response to normal exertion), debilitating pain, sleep dysfunction, cognitive dysfunction, neurological impairment, sensory sensitivity and severe immune dysfunction. The majority of ME patients also have…tachycardia.”
There is also no treatment, no cure, and almost no research. Now you know. Here is Amy’s picture in words of people with ME, posted for World Awareness Day, May 25:
Maybe you know, or used to know, someone with ME. We are the former coworkers who pushed ourselves to work for months or years, taking shorter and shorter days until one day we just disappeared from work and from your lives. We’re the friends you used to see several times a year whom you now haven’t seen in three or four years. We’re the people you always saw around the places you hang out, doing the activities you do, and now occasionally think, “Hmm, I wonder what happened to them.” Maybe we’re someone you see from time-to-time who looks and acts as you’d expect us to and you assume our appearance and behavior is what we’re like every day. What’s hard to imagine is that for most of us, if we’re even able, going out is a rare event or something we’re forced to do for an important errand or appointment. Then we go home, lie down and do little else during our waking hours for days or weeks except maybe stare at a screen, go online, read if we’re lucky, and do a bit of necessary housework. Most of that time we feel like we’ve run a marathon for which we haven’t trained, while suffering from mono, motion sickness, altitude sickness and a hangover. And nothing makes that sick feeling go away. Here I am in the place I spend 18-20 hours a day, not well enough to attend the SF protest.
Creating and curating a beautiful habitat, and taking pictures when she can, is Survival for her, not just Art. She is home almost all day, almost every day. To have beautiful colors, flowers, cards, objects, and prints to look at is how Amy keeps some pleasure and meaning in the space and time that used to be her life. Some of us are Creative Part-Timers because chronic conditions dictate our truth. But she is a True Artist, making some beauty out of this.
Here is my poem based on the signs she posted on Facebook for World Awareness Day:
my friends, family, work.
and sweat, sunny days,
and feeling “good tired.”
my cognitive abilities, good memory,
sleep cycle, vocabulary, and focus. Parks,
beaches, classrooms, museums, stores, restaurants, theaters, theatres, walking, and hiking trails.
My normal breath
I, too, wanted to try to make beauty out of this. With all my heart I want her Out of This.