Poetry Monday: Exquisite Politics
Tomorrow I will be meeting with members of congress to urge them to consider the needs of patients with arthritis and the physicians who treat them. Though I am often frustrated with the political process, I am also filled with enormous love for this country, with its messy representative democracy that lumbers along, beautiful and tragic all at once. To be part of the process, no matter how small, is both a great honor and a great responsibility.
Exquisite Politics
by Denise Duhamel and Maureen Seaton
The perfect voter has a smile but no eyes,
maybe not even a nose or hair on his or her toes,
maybe not even a single sperm cell, ovum, little paramecium.
Politics is a slug copulating in a Poughkeepsie garden.
Politics is a grain of rice stuck in the mouth
of a king. I voted for a clump of cells,
anything to believe in, true as rain, sure as red wheat.
I carried my ballots around like smokes, pondered big questions,
resources and need, stars and planets, prehistoric
languages. I sat on Alice’s mushroom in Central Park,
smoked longingly in the direction of the mayor’s mansion.
Someday I won’t politic anymore, my big heart will stop
loving America and I’ll leave her as easy as a marriage,
splitting our assets, hoping to get the advantage
before the other side yells: Wow! America,
Vespucci’s first name and home of free and brave, Te amo.
What Goes Around Comes Around
Image from the 15th-century Visconti-Sforza tarot deck.
“But the beginning of things, of a world especially, is necessarily vague, tangled, chaotic, and exceedingly disturbing. How few of us ever emerge from such beginning! How many souls perish in its tumult!”
—Kate Chopin (from The Awakening, ch. 6)
Sometimes you think you have everything figured out. You’ve found the key that unlocks the door and everything will be revealed. Except life so rarely works like that. Every ending is a beginning. Every solution is simply the beginning of another question. The wheel of fortune just keeps spinning. And I don’t mean the one that involves earning money by spelling words correctly, I mean the one that came before, literally “Fortuna’s Wheel,” depicted to the left. Welcome to the spinning wheel of life with autoimmune disease, where no spot on the wheel will get you a new car or a vacation to Hawaii, but it might get you back to where you started in the first place.
Several weeks ago I wrote about my most recent visit to the rheumatologist. He reviewed my bloodwork and asked how I was feeling. I had to answer honestly that my joints were killing me, especially my hands + wrists and feet + ankles. He took a look at them and said we needed to do more, that the Plaquenil was helping my other symptoms, but that if I was relying on the ibuprofen for my joints, I was just masking the inflammation and not altering the course of “the disease.” Of course, the problem in my case is that we don’t know exactly which disease entity we’re working with. (Still. Yet. Again. Have I mentioned I have trouble with labels? I have trouble with labels.) So “the disease” can’t really be pinned down. My symptoms (vascular and skin-related) last winter and my initial response to Plaquenil (also called hydroxychloroquine or HCQ) and prednisone, plus my negative Rheumatoid Factor (RF) suggested lupus. But after seeing the sad state of my joints as of a month ago, rheumatoid arthritis is back on the table. Are we looking at rhupus? MCTD? One of the spondylopathies? I still don’t know.
First, a little history. My understanding is that my grandmother—who died in 2002— had some form of what might now be diagnosed as Mixed Connective Tissue Disease (MCTD). She was originally diagnosed with “arthritis,” though how long ago, I’m not sure. Later, scleroderma was added, and I’m honestly not sure if there were other autoimmune issues at play. The scleroderma presented primarily as CREST, affecting her skin, GI system, and causing Raynaud’s. As a child, we were very close and I always loved going over to her house. Some nights I would sleep over so my parents could go out, and she and I would stay up late, playing cards and eating cookies.
She had all sorts of wonderful “devices” in her house that made things easier, even things like playing cards. There was an automatic card shuffler and wooden boards with horizontal grooves in them to hold a handful of cards without showing them to your opponent. She also had Tupperware that you could seal by pressing the center of the lid with your elbow and little squishy rubber things to make gripping a pencil easier. Not realizing that she had autoimmune disease, and not your standard run-of-the-mill Osteoarthritis, and that she probably couldn’t have shuffled a deck of cards or closed a Tupperware lid with her fingers alone, I just assumed these were fun gadgets. After all, I sometimes had trouble getting Tupperware containers to “seal,” and shuffling cards was endlessly complex for my 6- or 7-year-old-hands. I even assumed her hands, disfigured by the classic signs of inflammatory arthritis—ulnar drift, boutonniere deformities, swans necks—and the shiny skin of scleroderma, were what the hands of all “old people” eventually looked like. My father even tried to scare me out of cracking my knuckles by telling me I’d end up with hands like my grandmother’s. I know now that this is impossible, and yet I—so vain about my long slender fingers and pale skin—may end up with her hands regardless.
I don’t think anyone expected my grandmother to live as long as she did. I’m not sure they thought she would live past her 60s, and yet she lived well into her 80s. But the effects of her disease(s) and treatments took a terrible toll on her body. Everything from her teeth to her skin to her esophagus to her kidneys (and who knows what else) were slowly destroyed. It was only when I was older that I really began to understand all that she’d been through, working full time as a nurse while my grandfather fought in WWII. And that she’d continued to work after the war, mostly for economic reasons, but still an unusual choice during that era. I wish I’d been able to ask her about her diagnosis, the pain she dealt with, how her doctors treated her. Everyone says we like alike, in looks and in our stubbornness and tenacity. People have even assumed that photos from her teens and 20s are actually black and white photos of me. I just never realized until now how alike we really are. And I wish I still had her here. Because I’m scared, and I need her to assure me that I’m going to be OK, that life goes on, and that it can still be rich and beautiful and fulfilling and full of love, no matter which box gets checked, no matter what diagnosis code is written next to my name.
This entry was featured on the Patients for a Moment Blog Carnival: Revenge of the Conquered, or is it Avenge of the Conquered?
Another Afternoon with Invisible Illness
Another Afternoon
In the doctor’s office I recite this
litany of symptoms, a politician
repeating global warming statistics
he does not believe: Yes, I still feel dizzy
when I stand up, Yes, I still feel an ache
in my elbows and knees, Yes, I take a nap
on the couch in my office when my boss
is out for lunch and yes, yes, yes, my right
big toe is still numb. I try to wrap my
mouth around the word fine when the doctor
asks how I feel but I know my eyes plead
fix me, like a splash of ink on his
prescription pad could give consolation
instead of another sleeping pill.
(© 2005, Originally published in Grasslimb)
In honor of Invisible Illness Awareness Week (September 12-18, 2111), I wanted to post this poem, which I wrote more than five years ago, long before I had a name or diagnosis to describe what was wrong with me. I know my experience is not unusual, that many of us struggle with symptoms for years, dismissed as malingerers or head cases before we find a specialist or GP who recognizes our tangle of symptoms and can order the right tests to pull apart cause and effect. One of the hardest struggles of invisible illness is to convince people—friends, family members, employers, that jerk on the bus who gives you a nasty look for taking the seat reserved for seniors and people with disabilities—that we are, in fact, ill. Perhaps the hardest struggle is the initial pressing need to convince a medical professional that our symptoms are worthy of his or her care and concern.
Do not go gentle into that good night
I was thinking today about how I loathe the thought of having to downgrade to “gentle yoga” after several years of a Bikram and power yoga practice. I’m not exactly known for the likelihood of my “go[ing] gentle” into anything. I want to do what’s best for my body, but it’s not always easy to accept its limitations. So on that note, I present a (rather famous) villanelle* by Dylan Thomas.
Do not go gentle into that good night
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
You can listen to Thomas read the poem over at the Academy of American Poets.
*The villanelle is, in my opinion, one of the hardest forms to do well in English because of its reliance on both repetition and rhyme. The form uses only two rhyme sounds (a & b) and has two refrain lines that use the first rhyme sound (a). See Elizabeth Bishop’s “One Art” for another beautiful example.