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.