On Illness, Belief, and Saying Yes

Andrea Gibson’s essay is submitted as part of The Body is Not An Apology’s #WhenWeSayYES Campaign. Raising money to build the world’s most powerful radical self love website. Give Here:www.igg.me/at/whenwesayyes

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[The above photograph is of Artist Activist Andrea Gibson in a bent over squatting position. Their hands are crisscrossed and cupping below their knees.  They are wearing brown, laced dress shoes, black jeans that are cuffed at the ankles. There is a set of keys hanging from their right hip. They are wearing a fitted red and black plaid button up shirt with sleeves rolled above their elbows and stark black suspenders. Their hair is nearly shaved on the right and left side with longer bangs that slightly drape over the left side of their forehead. The back is shoulder length with shaved sides. Their facial expression is intentional, holding and soft. They are stooped in front of a body of water with a rusted metal structure back and to the right of them and a faint cityscape in the distance behind them.] 

I’m gonna come right out and own the fact that I’m a hypochondriac.  For as long as I can remember I have been unusually anxious about my health.   When I was a kid my mother made a list of all my ailments and hung the list on the refrigerator hoping it might open my eyes to how unlikely it would be for a person to actually have that many things wrong with them at one time.  On any given day the list might read something like this:


1)  Tongue feels swollen when drinking juice

2)  Potential black widow bite on left ankle.

3)  Feels like there’s TV static in my left big toe

4)  Ears ring after hoola-hooping

5)  Skin cancer freckles

6)  Popping kneecap, possible dislocation?

7)  Heart isn’t beating right

8)  Asthma around the bbq grill

9)  Skin turns to grandma skin in the bathtub


I’ve had the privilege of having had enough therapy to understand where my fears are rooted, to know how they came about, and over the years I’ve managed to build some sincere compassion for the part of me that hasn’t always felt instinctively safe in my skin.  I also feel particularly fortunate that when I’m not in perceived immediate danger, I can step back and find some humor in the extraordinary imagination of my fearful brain.  But in the moment when IT is happening, IT is never a pretty sight.  Take for example the time i ate a handful of peanuts on the airplane then immediately convinced myself i had a deadly peanut allergy that was certain to kill me by asphyxiation thirty thousand feet above De Moines, Iowa.  I was sweating and gasping and grabbing my throat in a humiliating scene that I am sure made the flight attendant the hit storyteller of all her future holiday parties.  When i eventually crawled back to reality, I had the same thought I always have after I’ve survived another run in with mind, “What is going to happen if I ever really get sick?”


In 2010, after several years of feeling generally not well, I woke up one morning with a sore neck.  By that evening my elbows and wrists were throbbing and pain was radiating through my arms and hands.   Within two week I had to hold myself back from screaming whenever I moved any part of my body.  If you’ve ever had a charlie-horse in your leg, imagine that kind of shocking pain in every muscle and joint, and imagine it every single day for nearly a year while desperately knocking down the doors of scores of doctors who can’t figure out what you have.  I remember being curled up on the floor of the Minneapolis airport after the last poetry tour I ever did without the help of a tour manager, knowing i would not be able to walk to my next gate. I was sobbing into the phone, my doctor’s sweet-hearted nurse having no idea how to respond to my screams, “My veins feel like they’re full of crushed glass! My blood feels like it’s made of crushed glass! Please please please help….”   


My spirit, during that time, atrophied as quickly as my muscles. Everyday I would wake up wanting to die and everyday i grew increasingly more ashamed that i could no longer take care of myself.   I couldn’t comb my hair without my shoulder stiffening into a hot cramp.  I couldn’t drive my own car because it hurt too badly to shift gears.  I couldn’t carry my laptop from one room to another. I couldn’t even sit on my ass, because my ass had literally disappeared and you can’t balance on an un-cushioned tailbone without pain.


It took almost a year, thousands of dollars in tests and doctors bills, and a seemingly unending maze of humiliation from the medical industry before i finally got diagnosed with Chronic Lyme Disease, a disease surrounded by political controversy at least partly born in the deep pockets of insurance companies who want to deny its existence so they don’t have to pay for its treatment. It probably goes without saying that a disease that people deny exists is the last disease a hypochondriac wants to tell people they have.  So when THE BODY IS NOT AN APOLOGY called me last week, almost 4 years after I started treatment for Lyme, asking, “Would you be willing to write something about your process of learning to say yes to loving your body while living with an illness,” I’ll be totally honest, my first response was “Absolutely not.”  


What eventually started stirring my YES, was realizing my primary resistance to speaking about my experience throughout these past years has been my fear of not being believed.  And while my particular history of run-ins with innocent packages of airplane peanuts has likely made me uniquely sensitive to the matter, our culture is notorious for refusing to believe the experiences of chronically ill people, not only people with Lyme.  What comes of that is not just an immeasurable amount of isolation and invisibility, but also unthinkable numbers of people who will suffer or die without ever getting the diagnosis, treatment or support they need.  If you’d like a resource for learning about Lyme I highly recommend checking out this site:   http://www.ilads.org  Something I learned years ago in conversations with trauma survivors is one of the most important things you can ever say to a person is, “I believe you.”  I know the instances in my life where I have personally failed to do that have caused an overwhelming amount of pain.


Over the last 4 years while undergoing intensive treatment for Lyme through a combination of eastern, western and holistic medicines, I have been extremely lucky to watch my health  improve.   Though I still have hard days, and though I often feel sadness about what i can’t do and what i may never be able to do, the experience of living with an illness has in so many ways positively changed my relationship to my body.   During my first year of treatment on a particularly difficult day, I was having a conversation with Carolyn Suslovich, a mentor/therapist/teacher of mine who has been living with Lyme for the past 30 years.  Sobbing into my hoodie in her couch in Denver I said, “I hate my body.  And my body hates me. My body is my biggest enemy.”  With her usual kind-hearted patience Carolyn said, “I think I have the opposite experience.  When I feel really sick, I feel extremely aware of how hard my body is working, how hard it is fighting to keep me alive. On my worst days I feel so much love and gratitude for each and every cell of my body working to pull me through.”  I’m not sure I’ve ever had the experience of having my perspective changed so quickly.  In that instant, I started seeing my body as my ally, and i started nurturing a new belief that i could trust my body to tell me the truth.  Pain, after all, is the body talking.  Panic is the body talking.  More times than not the message is simply, “There is more to heal.”  


Someone told me a few years ago that when a human dies the soul misses the body, actually grieves the loss of its pulse, its lips, its toes, its hands and all they could hold.  I think much of learning to say yes to loving body has had to do with learning to live in gratitude for everything my body feels, even its hurt and its terror, because of the truths those feelings surface.  That doesn’t mean I don’t scream at the top of my lungs when I’m in pain, and it certainly doesn’t mean you’ll want to sit in my row if you ever see me eating nuts on an airplane, but it does mean the list of things I appreciate about my body is now longer than that list of things that once scared me to death, and I feel good about saying I think that’s a solid start.



About Andrea Gibson

Andrea Gibson is a spoken word artist and the first winner of the the Women’s World Poetry Slam.  Gibson has toured venues around the world with readings on war, class, gender, bullying, white privilege, sexuality, love, and spirituality.  They have released six full length albums and published two books, Pole Dancing to Gospel Hymns, and The Madness Vase.   Gibson is co-founder of “Stay Here With Me”, an online space working to prevent suicide by using art to decrease the isolation, shame, and suicidality experienced by many in relation to trauma and mental illness.

 

 

Peruvian anti-logging activist Edwin Chota killed
September 10, 2014

An outspoken Peruvian opponent of illegal logging and three other native Ashaninka community leaders were slain in a remote region bordering Brazil, tribal authorities said Monday.

The activist, Edwin Chota, had received frequent death threats from illegal loggers, who he had tried for years to expel from the lands for which his community was seeking title.

Illegal loggers were suspected in the killings, Ashaninka regional leader Reyder Sebastian Quiltiquari said by phone. Pervasive corruption lets the loggers operate with impunity, stripping the Amazon region’s river basins of prized hardwoods, especially mahogany and tropical cedar.

"He threatened to upset the status quo," said David Salisbury, a professor at the University of Richmond who was advising Chota on the title quest and had known him for a decade. "The illegal loggers are on record for wanting Edwin dead."

Chota, who was in his early 50s, and the others were killed about a week ago while returning to Saweto, the community he led on the Upper Tamaya river, from a meeting about the logging issue with Ashaninka leaders in the nearby Brazilian village of Apiwtxa, said Mr. Sebastian.

He said his information was still preliminary, but that a Saweto villager said via radio that the men’s dismembered bodies were found at the community’s edge. Chota would frequently confront firearms-carrying loggers, he added, a machete his only weapon.

The other slain men were identified by a police official in Pucallpa, the regional capital, as Jorge Rios, who was Chota’s deputy, Leoncio Quincicima and Francisco Pinedo.

Peru’s main indigenous federation, AIDESEP, expressed outrage at police and the judiciary in a statement for “doing absolutely nothing despite repeated complaints” to protect their brothers slain “defending their ancestral lands.”

A commission of indigenous leaders from Saweto’s district was expected later Monday in Pucallpa to meet with a government vice minister, said Mr. Sebastian. The police official, Carlos Quispe, said authorities later planned to fly by helicopter to retrieve the bodies.

Chota had campaigned for six years for the title for his community, emboldening other settlements along the Tamaya to similar seek legal claim to traditional lands, Mr. Sebastian said.

Now, he said, people in those communities fear for their lives. He said he would demand a meeting with President Ollanta Humala to obtain assurances for their safety.

Ashaninka are Peru’s No. 1 Amazon ethnic group, numbering some 92,000, and Mr. Sebastian says violence against them has been rising since they began agitating for titles to their territories.

Chota had written more than 100 letters to state institutions about illegal logging and titling efforts in Ucayali, said Mr. Salisbury, “and he was an incredible incredibly dynamic and charismatic leader who gave hope to not just his community but many others by his courage and convictions.”

He said he and Chota personally met with Peru’s national forestry director, Fabiola Muñoz, in July and that forestry inspectors had just visited forestry concessions that overlapped with Saweto that were being logged without permission.

Telephone calls to Ms. Muñoz seeking comment on the progress of Chota’s titling efforts weren’t immediately returned.

Chota’s region is home to about 80% of illegal logging in Peru, which thrives on a web of corruption involving the widespread issuance of counterfeit logging permits.

For years, said Mr. Salisbury, large amounts of timber have been taken from Saweto – and from the Brazilian side of the Tamaya River – and floated downriver to saw mills in Pucallpa.

"It’s impossible to monitor where the timber is coming from," he said.

The wood from a single old-growth mahogany tree can fetch more than $11,000 on the U.S. lumber market, the nonprofit Environmental Investigation Agency said in a 2012 report on Peru’s troubled forest-concession system.

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"If you are not angry you are either a stone or too sick to be angry. You should be angry.

Now, mind you, there’s a difference. You must not be bitter; bitterness is like cancer. It eats upon the host and does not do anything to the object of its displeasure.

You said angry. Yes. You write it. You paint it. You dance it. You march it. You vote it. You do everything about it. You talk it. Never stop talking it”

- Maya Angelou in conversation with Dave Chappelle at 19:55

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