Thank you to Sarah Buttenwieser for an excellent review in Brevity Winter 2011 (35)! Sarah writes about Cover Me: “Her tenacity, ingenuity, and steady wits awed me. Few people could finesse the system to extract the type of affordable care she obtained. The way she writes about her fighting-for-access drama causes readers to hang on every word.” Sarah runs a cool blog at The Valley Advocate called Standing in the Shadows.
Okay, I’m going to be honest about a tough thing… not the toughest thing ever in my life, but the current challenge: rheumatoid arthritis. It came on last summer after my thyroid swelled up and shut down. Thank god my mom had the same thing happen to her at the same time; she provided the road map. The backdrop is a thousand well-meaning people advising me to swim and do yoga, not understanding that this condition is an incurable autoimmune disease.
And here’s the part that hurts the most: my hands. My typing hands. My connection to the world, my way of finding my own mind. I can feel it now as I type these words. Middle joint of left thumb, top joint of right index finger, other smaller aches elsewhere among the web of knuckles and the wrists.
Writing is the joy that saves me. It is better than any other activity for my pain because it reminds me who I am and keeps me in touch with all my past selves. It reminds me to look beyond the pain. (Oops, I tried to straighten my posture and the right shoulder and left elbow protested in response). Sitting up straight and the hips fire back.
This is a chronic condition but I’m in a flare up after diagnosis, which is supposed to be the worst part. I’ve graduated from pills like methotrexate and am waiting for a biologic injection treatment to begin, the new round of expensive wonder drugs that may put me in remission.
Some days I am grateful for my narrowed focus, pushed in on either sides by pain. “No” is much easier to say these days, but it comes with grief. Half the time I say no to things I wish I could do but know my body can’t handle. This is not an old-person’s disease. It is a chronic pain thing, and the presence of the pain is complex, interesting, and also maddening. Pain is a forest. Pain is a forest it’s hard to navigate through when there’s a seven year old on the other end of the couch nagging me to look up on Google the cheat codes for Mahogany City on Pokemon HeartGold on his DS. I feel like less of a mother. I had to miss most of a chess tournament yesterday. Probably even writing this is going to send me into the hell of pre-existing condition when I try to get new insurance. But it is what it is.
Yesterday I had a thought that comforted me, that spread relief through my body. I’m sure this thought would be maddening to many people who have a warlike combative stance toward their illnesses. But I don’t “have” rheumatoid arthritis, because as a Buddhist I think I don’t “have” a separate and encapsulated self. Instead, rheumatoid has become part of who I am. That’s the route toward true acknowledgment for me. And that adds a layer of curiosity. What does a rheumatoid woman do? What does the rheumatoid body want? What is rheumatoid’s favorite color? It’s my body “attacking” itself, but even that language puts a conflict inside me that I’m not sure is there. It’s a sign, instead, of my body misunderstanding itself, and oh lord is that an old story. That’s one I can live with. It’s hard, in a culture where solutions and blame are offered daily as our soul-food, to find space to become this rheumatoid woman in pain, a foreigner who doesn’t want to do battle with her body.
I had a great time making up a playlist for Cover Me for David Gutowski’s largehearted boy blog, which has a feature he calls “Book Notes” that lets authors imagine music for their writing. At first I was kind of daunted and kind of thinking in serious thematic terms, and then after a while I weeded out a few of the social commentary pieces I love to make room for some Dead Milkmen. There has to be at least one mix tape in the world with the Milkmen, Woody Guthrie, Social Distortion, Bob Mould, L7, John Mellencamp, and Lucinda Williams. One thing I learned from this is that every mix is more about the person making it than the theme. I’d probably figure out a way to justify all these bands for an Opa Nobody list. Maybe I’d have to throw in some Hubert Kah or Herbert Gronemeier.
Thanks very much to Dianne Feeley of Against the Current for this interview, “Living and Working Uncovered,” about the experiences that prompted me to write Cover Me. The interview appears in the Jan./Feb. 2011 issue, which is the magazine’s 150th.
Thanks to RedRoom and AOL for another chance to talk about healthcare; my second commentary, “ObamaCare Socialism? Not On Your Life” is up on the AOL op-ed page. Many thanks again to Gina Misiroglu of Red Room, the authors’ site, for putting me in touch with AOL and for having the idea to connect my book with the Op-Ed page. The debate is a raging one this time. Whew!
Doug Dangler of the Center for the Study and Teaching of Writing at Ohio State University interviewed me (broadcast on Nov. 8, 2010) for a program called “Writers Talk” that’s broadcast in Columbus, OH. We had a great conversation and then he edited out all my “uhhh”s and “dude”s and “awesome”s and made me sound very coherent. Thanks, Doug! Listen here.
Thanks to Lisa Romero at ForeWard for this great review of Cover Me:
“Huber’s tale resonates. Who hasn’t encountered obfuscating obstructions in even the best health plan, to say nothing of the millions of un- and underinsured who will read with head nodding (and maybe fist pounding). Amid her many joyless ironies—like working without benefits for a coalition advocating universal healthcare—Huber injects humor and wit, tinged with a humanity clearly honed by experience at every rung of the slippery healthcare ladder. The rest of the story—about love, friendships, motherhood and career—keeps the reader rooting for Huber, hoping she’ll find not just healthcare but a happier, healthier life.”
My opinion piece, “Will Health Reform Help Small Businesses?” is up today on the AOL op-ed page. This was an amazing opportunity–many thanks to Gina Misiroglu of Red Room, the authors’ site, for putting me in touch with AOL and for having the idea to connect my book with the Op-Ed page. It’s fascinating to see the comments–sort of a mini-portrait of the healthcare debate. Here’s my Red Room site. Red Room is a cool way to put all kinds of content up on the web and make it accessible to readers in a nice-looking package. And the smart people running it actually pay attention to what the authors are writing and connect the dots. :)
I got to talk with Doug Dangler when I visited Columbus, Ohio, and he interviewed me for a great new series of video and audio interviews called “Writers Talk.” It was a wonderful experience, and very cool to see how my old employer the Center for the Study and Teaching of Writing is branching out! This is when it will be broadcast in Columbus:
Monday, November 8, 3:30 pm., WCRS radio, 98.3 & 102.1 FM.
Wednesday, November 10, 8:00 p.m. WCBE radio, 90.5 FM.
Published on Sept. 15, 2010, by T. Tamara Weinstein in Elevate Difference
“If you suspect that your experiences alone put the hell in healthcare, then Cover Me by Sonya Huber is the memoir for you. By the age of thirty-three, Huber had already endured eleven gaps in healthcare coverage, and had also been sent to collections for medical debt multiple times. She became an expert at scavenging for alternatives and at squeezing every drop of blood from the recalcitrant turnip that is the US healthcare system.
Cover Me is a moving portrait of how access to healthcare determines who is a “have” and who a “have not” and in Huber’s hands, the issues surrounding healthcare reform become clear and relatable. Improbably, given the toll the struggles exact, the author is also very funny, telling her stressful tale with an irrepressible sense of humor.
Huber began her adult employment journey as an idealistic labor activist and became a university professor. At one point, she held down three jobs at once, none of which offered healthcare benefits. The pressure to find affordable healthcare ballooned exponentially as Huber went from single working woman, to wedding a man who was also a healthcare “have not,” to becoming a mother.
But even as a single woman, the challenge of good health was daunting. Diagnosed with a disabling panic disorder, Huber was forced to scrounge for low cost medical clinics and sliding scale arrangements, at one point even bartering office cleaning services for therapy. She was often left to rely on two of the universe’s most unstable forces: luck and the kindness of others. At times, sympathetic doctors offered free pharmaceutical samples and dentists forgave their fees. But there were consequences, many of which could be filed under “you get what you pay for,” or more accurately, “you get what you are able to pay for.”
As a wife and mother, Huber’s determination grew even grittier. Schlepping her infant son through the frozen Ohio tundra to register for WIC and Medicaid benefits, and expertly working the phones to correct inevitable and near catastrophic bureaucratic errors, Huber became a master of resourcefulness and tenacity. Even during a rare stretch when Huber had coverage through an HMO, she found it to be Dungeons-and-Dragons-esque, requiring the right “passwords” to gain entry. (The passwords being properly worded referrals and appeals, and an intimate familiarity with the policy’s fine print.) If it’s true that insurance companies spew gobbledygook and denials to weed out folks who lack perseverance, they never counted on someone like Huber.
Huber’s Odyssean journey through the American healthcare system throws the institution’s inequities and ironies into stark relief. She describes working for a nonprofit whose mission is to provide low income workers with health insurance; however, in a stunning revelation of either outrageous hypocrisy or business-as-usual in fund-strapped nonprofits, that same organization was unwilling to provide Huber with healthcare coverage. Meanwhile, Huber’s boss, who had stellar insurance through her prominent surgeon husband, could brandish her benefits card and blithely obtain top care. Reading this, you will be tempted to hurl the book against the nearest wall, but you won’t because you’ll be too riveted to let go.
Huber’s story will resonate with anyone who has ever battled a medical bureaucracy. That is, with everybody in America. Her refusal to say “uncle” will inspire, and along the way, readers may even pick up invaluable tips on navigating the labyrinthine depths of both public and private healthcare. There is also a twist at the end that makes university bureaucracy even scarier than its medical counterpart.
One question nagged me throughout Cover Me: where is Huber’s husband? He seemed to hang back and let Huber take the front lines, a story known to too many wives and mothers. But that question aside, and because Huber is such a deliciously skilled writer, Cover Me is the best kind of memoir; it is engaging, enraging, tragic and funny. Fortunately, laughter as medicine is one thing the insurance companies have not yet managed to deny.”