There is, I hope, a thesis in my work: we may encounter many defeats, but we must not be defeated. That sounds goody-two-shoes, I know, but I believe that a diamond is the result of extreme pressure and time. […] I am saying that we may encounter many defeats—maybe it’s imperative that we encounter the defeats—but we are much stronger than we appear to be and maybe much better than we allow ourselves to be. Human beings are more alike than unalike.
– Maya Angelou, from The Art of Fiction No. 119, the Paris Review
Earlier this week, the writer, teacher, composer, filmmaker and exceptional human being Maya Angelou died at the age of 86. I remember watching TV during the 1993 Presidential Inauguration, spellbound as she recited “On the Pulse of Morning.” I was only twelve years old, but I knew I was witnessing something awesome, in the sense of breathtakingly impressive. I now grieve her death, but I also recognize that she has left behind an extraordinary legacy, a legacy that lives on in her creative works and the influence she has had on multiple generations, myself included.
But it isn’t Maya Angelou’s death that makes my heart heavy. It’s the news that two women from the online arthritis community have died, one from heart failure, and the other from an untreatable infection. I want to say that I didn’t know either of them personally, so my grief isn’t one of personal loss, and I do not want to encroach on anyone else’s sorrow. Yet I can’t help but feel the rage and sadness begin to boil up inside of me: these deaths should be preventable. Autoimmune disease shouldn’t have shaved 60 or even 16 years off of these young women’s lives. Yet too many doctors fail to identify early autoimmune disease, and then after diagnosis they fail to “treat to target,” insisting that if joints aren’t visibly inflamed, then everything must be OK, dismissing patients as hypochondriacs when they report symptoms (like fatigue, weight loss/gain, and chest pain) that point to the violent damage that autoimmune disease is doing to internal organs and the vascular system.
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.
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.
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.
The following lines, which make up the seventh section, “Pardon,” capture so well how I feel in the middle of a bad flare and then afterward:
A piece of burned meat
wears my clothes, speaks
in my voice, dispatches obligations
haltingly, or not at all.
It is tired of trying
to be stouthearted, tired
beyond measure.
We move on to the monoamine
oxidase inhibitors. Day and night
I feel as if I had drunk six cups
of coffee, but the pain stops
abruptly. With the wonder
and bitterness of someone pardoned
for a crime she did not commit
I come back to marriage and friends,
to pink fringed hollyhocks; come back
to my desk, books, and chair.
All of this is at the forefront of my mind tonight because I saw my rheumatologist today. He’s not pleased with my progress on the Plaquenil (I’m still needing prednisone or massive doses of ibuprofen to keep the inflammation down) and wants to add Methotrexate. Based on my response to the meds and my blood work, he’s added rheumatoid arthritis back to the table in terms of diagnosis. So I may be looking at an overlap syndrome/mixed connective tissue disease diagnosis. I have too many symptoms and they refuse to sit neatly in a single disease category. My hunch is that most of us with autoimmune disease are actually like this, but it’s not the way medicine wants to work. Doctors want neat distinctions between separate categories. Taxonomy is comforting. Hell, I was comforted just having a name to give to my symptoms, even if it was “lupus.”
Realistically, I just want to feel better, and if it’s going to take MTX to do that, then I’m willing to try (though my dad had a terrible experience with it, so I’m hesitant). But at the same time I had been consoling myself for the past six months with the idea that with lupus at least the joint involvement would be less damaging, and that with SLE limited to my skin and joints, I had a much better prognosis in terms of lifespan and quality of life. Small consolation, but it was there. Now my silver lining has been ripped away, and I’m not sure what to think. I am indeed “tired of trying / to be stouthearted.”