Wednesday, December 27, 2017

She Swallowed A Spider

I will always remember 2017 as the year I nearly went blind. 

Nothing happened-no tragic accident to blame just a sudden and steep decent into oblivion, the normal side effect of treating a chronic illness: Idiopathic uveitis, which means inflammation without explanation. 


It had started in March of last year- I woke up one day and my eyes were red. I worked as a health specialist and social worker at a preschool for children experiencing poverty, and I had swum in the pool the day before. I thought maybe it was the chlorine or I had caught something from the kids again, or it was because of the medicine I had taken for a cold the week prior-a Zpack and prednisone, and then nothing else of it. 

But the red didn't go away, it got worse. I went back to the clinic, cut out the meds and instead was prescribed antibiotic eyedrops. I flew off on vacation. Two days later the D.R. sunshine became blindingly bright, and I was laying in bed pressing icy spoons into my eye sockets. 

Back in the U.S., an ophthalmologist diagnosed uveitis--inflammation not bacterial infection-- and gave me the first steroid eye drops. I don't remember whether he discussed side effects, but I do remember he said it could be due to an underlying illness- something very scary like MS, Lupus or Crohn's. First available appointment with an internal medicine specialist was a few months later. We ruled out a lot, confirmed nothing, and some of the tests were inconclusive; the only thing unusual was an old (non-acute) case of Coxsackie virus (common for children), and indication of a worn out immune system. Nothing that that would cause uveitis.

When I couldn't find an easy explanation, I began to believe everything was a possible contribution. I wondered about the antibiotics I had taken, the pool, the sick children, and so much more. I thought of that one time I had smoked that special pipe of spirit molecules and the ghost lines that followed, the bonfire ritual on Halloween, the prayer for my dog's health, the promise I would give anything in return. 

Each visit, I asked my doctors what else I could do, whether I should change my diet, cut out drinking, take some kind of supplements. No, they all told me, shaking their heads, there was nothing I could do. Just more tests: TB, MRI, EKG, STI checks, and more lab work. Then they began injecting the steroids around my eye. I had good doctors, but they didn't know me, they didn't understand I wanted to heal holistically.

I have a dual masters in public health and social, and I have never felt so helpless, so powerless. I did not understand this language they were speaking, and I didn't know what to do. I began to research, just as I had for many clients. But when you Google your own disease, you meet your most terrible nightmares head on, horror stories shared in chat rooms and cries for help as blog entries. I read of some successes through self-treatment. I started taking vitamins, some anti inflammatories. Went to an acupuncturist who put a box of crystals on my chest and felt my pulse and prescribed tinctures and diet changes. I had a reiki energy healing. I asked nuns to pray for me. I stopped exercising and finally rested. But I didn't get better. 

Stress, my specialist finally said, was one thing that I could do- reduce my stress. So I quit my dream job and moved from the concrete jungle of New York City to Asheville, North Carolina, where people have come to heal for decades, where they come just to breathe the air of these magical ancient mountains. I stopped doing clinical work with poor children and took an evaluation job at a University.  

I got new doctors, who recognized me and listened. But still, I needed steroid injections, now directly into the eyeball. I did everything I could-- had a shaman burn frog medicine from the Amazon into my skin to purge my system, a woman perform craniosacral therapy to adjust my inner alignment, took many herbal teas and tinctures. My new acupuncturist did a stool sample and found a bacterial overgrowth, so we addressed that. She recommended a naturopathic doctor, but I couldn't afford the $250 intake that my insurance would not cover. She said a paleoautommune diet might help, so I cut out or back on everything that would upset my gut or inflame my body. There was more I couldn't eat than could.  I went into therapy to treat old wounds. 

It worked. The inflammation was down, under control, and we could wait on the immune suppression therapy they had recommended. I rejoiced and felt powerful, that I could heal my body, my eyes, with the choices I made.

Then summer came and I got less strict, drank beer on the river, lay in the sun. I started feeling the fuzzy come back to my vision, bit by bit. But I wanted so badly to be normal. 

One night, I got in a fight with a best friend. Our argument triggered deep emotional trauma that I thought I had worked through, but I felt the same affects on my body in the days following as I had years before, raw and full of fear, unable to sleep. That week the blindness came quickly. By the time I went in to my doctor, I could barely see out of my left eye, nothing but changes in light and darkness and slight indications of movement. 

Cataracts, it hit me as a death sentence. Again, there is nothing you can do. We must operate and to operate we must completely control the inflammation. It's time, for the Humira. I cried, and both eyes blurred completely. 

The Humira suppresses my entire system, makes me weaker, more tired, more susceptible to every kind of disease. And I can't have children for the years I am on it because the risk of serious birth defects is so high. I am 32 years old and single, but I love children and dream of having my own some day. 

The cataracts are a normal side effect of the steroid treatment I have been on for almost two years now to treat a chronic inflammation that cannot be explained. But nothing is normal about my experience. I almost lost my independence. I could barely read, barely drive, barely make my dinner safely at 32 years old, living in a new town with no family. I feel as though I swallowed a spider to catch a fly. 

The cataract surgery was a success, and my vision has returned, albeit changed, for I wear glasses now and still struggle to read sometimes. I hadn't realized how truly limited my sight had gotten until I took the second bandage off my left eye and three dimensions returned to my world. I walked around my bedroom touching the walls, the world. I looked at the tree outside my window and sobbed at the beauty of its bark. 

I tell my story, not to insight pity but to share with others the lessons I have learned so they may not go down the same path, however rare. I don't regret anything that happened-this journey taught me much about myself and our health systems and changed how I interact and perceive. But I would do some things differently, if I had known then what I learned from the experience, and this I hope for you.

1. Ask the hard questions, ask often--of your doctor and yourself. What are the side effects? How common are they and how long do they take? What are my other options? 
Steroids cause cataracts, but I thought this was years down the line and would have tried something different if I had known I would never read only with my own eyes again. We have great doctors in our country. But they tell you only what they think you need to know to be "informed" and "compliant." Making healthy choices involves a deep understanding of the ways our past, our emotions, our environment affect illness development, and what we can do for ourselves. Healing is holistic. 

2. Do not blame yourself for what happens to you. Or others. Could've and should'ves are worthless. It wasn't the pool, the child, the smoke, the fight with my friend, my doctor failing to explain. The most difficult lesson I am learning is to let go of the guilt that comes with hardship. It doesn't do any good. But harness the curiosity and ask what can I do now to take the best care of myself? 

3. Don't judge others for what happens to them either. We live in a complex world and causality is not one-dimensional. Many, many people deal with chronic illnesses every day. In my profession, I have participated in dozens of meetings about chronic disease and have gotten really tired of over simplification. Yes, obesity can be preventable, but not everyone can afford nutritious food and exercise. Yes, smoking cigarettes causes lung cancer. But many factors contribute to someone picking up a pack. 

4. Acceptance is a process. Some days are better than others. Find your coping mechanisms and USE THEM often. People have called me strong, but what else can you do. I cannot tell you how much I have binged on Vampire Diaries and bubble baths in the last months. And how many trees I have hugged. 

5. Know your boundaries. Know what nourishes you. Surround yourself with love. We are connected to other energies: some feed us, some foul us. Walk away from what doesn't help you when you need to protect yourself. Just don't engage. Then do some good coping crap. Water the right seeds, as the Buddhists say.

6. Ask for help. This has always been really hard for me. I was the eldest sibling and very independent. I have taken care of myself for a long time, and I couldn't any longer. People like helping each other, especially if you are kind. Ask. They can say no, but usually say yes, and everyone wins. Vulnerability is a sign of strength. I am forever grateful for the words, rides, meals, and hugs I received. In a particularly hard bubble bath, my best friend told me if I went blind she would walk me to the ocean. That was the most beautiful gift I have ever received. 

7. Appreciate what you have. Seriously, it's not cliché. You are reading this right now. I lost my ability to read well for a long time, while still having to work every day. What do you have to be thankful for right this minute? Think and smile. 

8. Find the silver lining. I don't believe everything happens for a reason, but I do believe we can find reason--growth and lesson-- in what happens. When you lose one sense, others are heightened. My hearing captures bird song more clearly, and my touch is electric now. As my sight changed, I called it wizard vision on the good days, and saw flowers glow. Certain people still have haloes and light spreads as butterfly wings. Try to find the beauty in your unique perspective, perception.

9. REST. Often. It is the best thing you can do for your body and mind and spirit. American society rewards pushing through pain, but we will not endure without rest. 

10. There is a difference between broken and healing. Don't let people make you feel less than wonderful and worthy. Don't let them be too fragile with you when you feel strong. You deserve a fuck yes, always. 


Okay, that's what I have for now. But healing is a process, just as acceptance is. May you continue to grow and heal and nourish and water and protect in the coming year. 

With so much love and gratitude for the people, animals, mountains, water and air that has helped me heal and continues to every day. 
Emma Camille

Friday, September 9, 2016

Ay, Colombiano

Shutters clack against windowless wooden frames, 
crumbling walls
like someone knocking.
Drying towels and blankets billow
as phantoms.

Hay mucha tierra en el viento.
It burns the eyes.
The air tingles 
en la misma manera de las Santa Anas 
de mi juventud.
the kind that starts wildfires.

It can make people mad, 
I say remembering that book
the White Oleander.
Explícamelo, he asks.
No puedo.
It's the ions. Our breaths are charged.
but something is lost in translation
or tequila.

Bailamos, borrachos de deseos.
Él, un tiburón, su sonrisa peligrosa.
Yo, con ojos de una venada.
He guides me in the darkness: 
You must let your body go.
Voy a tratar.
Turn around,
para que pueda ver tu cara hermosa.

After he leaves
I swallow his scent in the sheets,
trace the memories on my skin,
and sweep the trash from the floor.
Era una esperanza 
de una brujita 
a travez de una estrella cayendo.

Ahora, sí, 
hay golpes en mi vida, tan fuertes, 
otra vez.

Sunday, February 3, 2013

Street Speak


Her father was left alive because of a boxing match. He had been abducted during the “dirty war” which they now prefer to call “terrorism of the state” because there was no war. He was taken from his home for no reason and beat repeatedly for information he didn’t have. But there was a boxing fight that night and before they’d finished him off they left to watch. And so he survived and she was born, in the villa of Las Bocas, which she’d left when she was two and returned to with us today.

Don’t wander away from the main tourist plaza because it becomes a shanty town, warns the ex-pat who directs us to the right camioneta. I turn to my friends and tell them that I like slums. Me too, they chime in unison. So we walk a bit farther than others might and watch the streets transform from façade to reality.

A guy strums a guitar on the balcony, switching it for a mate gourd between each song, belly hanging comfortably over belt.

Two little girls share one pair of roller blades, several sizes too big. Each wears one on the inside foot and they skate together holding hands and tumbling onto the sidewalk. We hold our breaths a block away until they popped up laughing.

On old man peers out of crooked shutters at his grandchildren splashing in a plastic pool below. 

Sheet metal walls two stories high covered in cracked and peeling paint left over from boats that sailed many decades ago. Burned out cars. Laundry drying the warm river air.

White walls say nothing. So now the city is covered with images of love and loss and violence and fantasy. Identity affirmed and preserved in a slanted signature, even when bodies are never found. 

Mas amor por favor. 

Sos parte del cambio. 

Pensar es un hecho revolucionairo.


Sunday, January 27, 2013

Hospital de la Matanza


There were dogs in the hospital. I counted three. There seemed to be more but the same ones simply moved from one floor to another as they pleased. No one there really noticed. But someone in our group did and asked the social worker giving us a tour about them. She was embarrassed.

One belonged to a man who lived at the hospital, in the waiting room just outside the maternity ward. He had nowhere else to go so they let him stay there and keep his dog with him. Our guide was very proud of the room. It had been built recently so that people would be comfortable while they waited for their babies to be born. Looking in, I could not tell which person was the resident, and to me it did not seem like such a bad place to stay. You would see so much joy from this glass walled room… one of the most beautiful experiences of life happening over and over again.

The patients and visitors seemed to like the dogs as well. The dogs had a calming presence, sleeping in corners and strolling casually, unaffected by suffering of such a place. They made it feel more like home and less like an institution. The floor and walls were a bit dirty, but so too where the homes and skins and clothes and of the people of the campo who came here for help and for solace. Perhaps there is something to learn from this… that the little things that make strange situations more normal can bring great comfort to those in pain.  Some broken rules do more good than harm. 


Thursday, January 10, 2013

Death and Sunlight



The stench of rotting flesh unearthed and caskets cast aside. Spiderwebcracked glass doors and rusted padlocks let eternity rest. Who comes to care for the remains of loves long lost? Some. Not all.

How many children went hungry so that mausoleums could be built and strangers could admire the colored light of stained glass ceilings reflected upon floors out of reach? Salvation and adoration. What legacy is left in the corners of Cemetario de la Recoleta? What secrets buried.

Look into the life lines of your palm and see ancestors. Strength and sacrifice.

Cats sprawled across certain stones seem to be missing parts of their stomachs and their souls. The vacancy is more frightening than anything else here. Broken drawers reveal open coffins and steps leading to depth. Let them wander.

In circles las Madres de Plaza de Mayo search for their ninos desaparacidos. Many in silence. Simply walking, with white scarves to show resistance to the evil that exists and never can be undone. Tourists gather and flash cameras at their weathered faces and at those of their children, their grandchildren-- at the black and white pictures that the women string from their necks with names and dates written below and the men hold up on picket signs. The prints are old and scarred by the sun and their hands shake under the strain of the banner but still they walk. With respect, with resilience, with reason that we cannot begin to understand only looking on.

Across the busy street lies the body of one man who fought for the freedom of Argentina and carried its flag across the Andes. Two soldiers guard his coffin and four marble maidens. Outside the cathedral a flame burns for his bravery y that of the soldado desconocido de la independencia. Saludalos! the wall tells us.

And thus some lives are revered by all who pass and others by only those with great strength and greater sorrow... but still so many go unnoticed and are truly lost.


Monday, November 19, 2012

Shit Matters

Today is World Toilet Day but there is not much to celebrate.  

Diarrhea kills at least two million people per year, according to experts from the World Health Organisation (WHO). It can be prevented and treated, but we are not doing enough to address this critical global health problem.  

UNICEF’s 2012 Progress Report, released last month, showed that diarrhea is the second leading cause of young child deaths worldwide (responsible for 11% of deaths, following pneumonia which causes 18% of deaths). Although diarrhea’s death toll has dropped by a third in the last decade, this progress is insufficient for a disease with simple, proven, cost-effective interventions.  

As the causes of and conditions for diarrhea are inextricably linked to desperate poverty, many interventions require meeting the most fundamental human needs. Deaths can be easily averted through practices such as breastfeeding; providing adequate nutrition, safe drinking water and vaccinations; and maintaining basic sanitation such as hand washing with soap. 

Open defecation, which is practiced by over a billion people worldwide, remains a major contributing factor to diarrheal disease. I have seen children in the poorest slums of Kenya, India and Central America run barefoot in streets where feces flow freely. They play in garbage and draw pictures in the dirt, running their little fingers through sewage then have no water or soap to wash up.

The United Nations has committed to reduce the number of people without access to safe water by half, and many of our big-hitters in global health are working to address this, but expenses are considerable. The Gates Foundation recently launched a “Reinvent the Toilet” competition, challenging researchers to leverage new technologies to design models that function without sewage output, water or electricity, yet the cost of winning prototypes may initially be as high as $5,000 (though this drops with commercial production).  In many ways, meeting critical needs and implementing infrastructural changes presents a far a greater challenge than other intervention techniques to treat the symptoms of this illness.
So what can we do to stop this shit? 

First and foremost, talk about it. The Community-Led Total Sanitation (CLTS) method, used by the World Bank, Plan International , UNICEF and The Gates Foundation among others, begins with communication. If we can raise awareness for the potentially deadly problems caused by open defecation, we can actually stigmatize it and encourage people to change their common behaviors.  According to the CLTS approach, this awareness is a critical first step to trigger a community’s desire for change, propel them into action and encourage innovation, mutual support and appropriate local solutions, thus leading to increased ownership and sustainability.

Next, we must keep talking. The dialogue must extend beyond the impoverished communities where children are dying from diarrhea. There is an incredible dearth of private donor-driven funding for this cause; by talking about it here, in the U.S., we can spread the awareness, so people will understand the gravity of the issue and support the treatment of the disease. Here, we must remove the stigma associated with diarrhea, so that people will be willing and wanting to publicly help prevent it.

Three key interventions can successfully treat diarrheal disease: administration of oral rehydration salt (ORS) solutions to prevent life-threatening dehydration (the main culprit of diarrheal deaths); continued feeding; and zinc supplementation. These low-cost treatments remain inaccessible for the vast majority of the world’s most vulnerable people. Oral Rehydration Salts alone could prevent about 90% of child deaths from diarrheal dehydration, yet less than one third of diarrhea- infected children receive ORS, and there has been only a 2% increase in this access over the last decade.  ORSs have been criticized as a “Band-Aid” in places where safe water and sewage systems do not exist—only providing the most superficial treatment rather than addressing the underlying causes of the disease. But the fact of the matter is that they save children’s lives, and it’s better to bandage a wound then let it bleed dry.
Oral Rehydration Salts cost about 10 cents each. They can even be substituted with a homemade mixture of sugar, salt and water. If only more mothers were aware of this treatment and the treatment was more widely accessible, many, many lives would be saved.

The technology is here; the effect is proven; the cost is negligible; and the services are available.
So let’s all be potty mouths. The time has come to start talking about diarrhea, why it matters, and what we can do to stop it.  

Friday, June 1, 2012


the scenic route

home is a matchbox and pocketknife
buried in the cargo pants that don’t change.
everything carefully categorized, compressed and cleaned
before departure,
now crammed into corners just out of reach
from the driver’s seat.

single key on the chain.
two sets.
but no one to hold onto the spare.
stream of horizontal lines empty cans  diesel signs
ticking away the odometer.
radar enforced but not controlled.

the cracks on the windshield slowly spread.
wonder if they’ll find each other
somewhere in the heartland.
and whether the engine will make it
from this coast to the next.

bet your life
on nothing but liability coverage.
keep your eyes on the road
not the rearview.