Vision Quest

I watched as the needle moved closer to my exposed eye. The instrument, held steady by the confident hand of the physician, was about to penetrate membrane and deliver medicine to severely inflamed tissue.

The injection was for panuveitis caused by a rare autoimmune condition called birdshot retinochoroiditis. Since diagnosis years prior, I’d experienced a variety of treatments, from varying doses of steroids and other oral immunosuppressants, to monthly “chemotherapy” infusions at a hospital two hours from home. Off-label biologics were delivered via eye injection, as were corticosteroid implants. And along the way many, many rounds of anti-inflammatory eye drops were used to try and quell the fire that raged in my eyes.

The journey had begun with strobe light type flashing, floaters, and diminished vision. As the symptoms grew more pronounced, mild anxiety turned to  panic. In desperation, I sought out general practitioners, ophthalmologists, neurologists, retinal specialists, and ultimately a Harvard-based ocular immunologist whose treatment regimen helped turn the tide away from a progression to blindness.

In the office of the retinal specialist, a provider discovered through the Harvard doc, I am receiving a course of monthly eye injections. The room where shots are administered is small and narrow. The stiff-backed exam chair props me up, as I focus on my breathing. The anticipation inspires sweaty palms, a pit in the stomach, a sense of dread.

The moment is surreal. As I sit in the chair with eye propped open via medical device, the sharp item slowly approaches. I am almost out-of-body, breathing in and out, in and out, as the physician’s face grows closer to mine. Then the thin, stainless steel pierces the eye surface, filling the socket with fluid.

Each injection is followed by temporary darkness from the pressure; the return to light is gradual. A moment of sightlessness, as if in a darkened room at midnight, eventually transitions to a faint gauzy view, then – finally – a full return to vision.

The first time the loss of sight occurs, there is alarm in the physician’s voice and a suggestion that perhaps the needle should be reinserted to extract a portion of fluid. Thankfully, that doesn’t happen. On subsequent visits, we expect the result and prepare accordingly.

Years later, I reflect on the experience as if it were another life lived.

Once I absorbed what was happening and realized no one would be waving a wand to magically fix me, I decided to chart a course. I learned what I could about the condition, about autoimmunity and eye health, and sought out experts and information to facilitate healing.

I travelled to Boston to receive treatment plans from the world’s expert on the condition (how lucky was I to be within driving distance) and to participate in studies. I allowed myself to be poked, prodded, tested, injected and examined by teams of doctors and interns so they could learn from a non-textbook case. I was a spectacle, literally under a microscope, and learned to be okay with it.

But I also opened my mind to alternative healing, from nutrition and acupuncture, to meditation and massage, and a host of seemingly far-out practices. I didn’t want to be “sick,” so I explored every option I could find. After meeting a fellow birdshot patient with celiac, a genetic immune response triggered by ingesting wheat, barley and rye proteins, I requested a blood test. A positive result led me to a gluten-free diet, one I still follow today.

At one point, I teetered on the edge of legal blindness. Scared, uncertain, and frequently angry, I kept searching for a solution. But I was also practical. While following my doctor’s treatment regimen and exploring alternatives, I also prepared for the worst case scenario. I consulted with a local association for the blind and visually impaired, and learned how to work and function in a world designed for the sighted.

Then came an implant study, followed by rounds of eye drops. Remarkably, my eyes became and remained “quiet.”  Was it an anomaly or would it sustain?

I’m beyond grateful to say I am currently in remission.

“It’s remarkable, Mrs. Smolen,” my retinal doc will say at our annual appointment. “Honestly, we thought vision loss was a certainty for you. There was so much inflammation and damage.”

Is the healing miraculous? Maybe. Or perhaps it’s the result of a committed belief in possibility mixed with expert care. Regardless of what got me here, I’ll take it.

While the years of  inflammation had an impact, especially in my left eye a la vision “holes,” wavy lines and diminished acuity, I’ve adjusted. Other than increasing the font size on my laptop and phone, I function in a fairly normal way.

There is a lingering reality, however, and it is this: there are no guarantees. I have no idea if symptoms will recur. But that’s just how it is for all of us, isn’t it? None of us knows what’s around that proverbial corner.

I do know I’ve gained new respect for my body, which is a powerful communicator. My eyes are the canary in the coal mine and any fluctuation is a red flag; a subtle flashing or a web of floaters cropping up out of nowhere inspires action. “Whoa, hold on,” I’ll say to myself, before dissecting what I’ve been eating or drinking, reviewing what I’ve been thinking and feeling, and hashing out what stories have been spinning unchecked in my brain to incite a stress response.

At this stage of life, I do a lot of reflecting. With this journey in particular, I realize I’ve learned some powerful lessons:

• Self-care is critical.  No one else is going to take care of my physical and mental health for me. There are treatment plans and support, but I have to do the work. If you, like me, come from a long line of people who “muscle through,” learning how to care for yourself like a best friend is ridiculously challenging, but it’s an absolute requirement of wellness.
• Face the problem head on. At first, I wanted to pretend I didn’t have an issue. I was scared, uninformed, and experiencing a condition no one in my world could relate to. I could have ignored and denied my way right to blindness. But, as poet Robert Frost once said, the best way out is always through. Instead of burying my head, I opted to learn, take action, and ask for help anywhere I could find it.
• We are stronger than we think. I now know I can get through any situation, no matter how daunting. Adversity, like shots to the eyes, can show us who we really are – if we’re willing to see the truth.
• There are always choices to be made. Even if there are no treatments, we always have the choice to decide how we’re going to be. Am I going to face this experience in fear or with courage? Am I going to commit to the possibility of healing, learning and growing or am I going to crumble into a ball of self-pity? It’s my choice.
• Trust matters. Trust in my physicians. Trust in myself. Trusting that my own curiosity and intuition can help me as much as the medicine.
• Healing is a never-ending journey. While we’re alive, we’ll have sh*t to heal – physical, emotional, spiritual, etc. Every day presents challenges and obstacles, as well as opportunities. If we’re open to hashing through them, getting to the bottom of what they can teach us, we can learn and grow. Or not. Again, it’s a choice.

Like everyone, I am imperfectly human. I sometimes ingest things that don’t support my physical health. I sometimes speak without thinking and cause hurt feelings in others. My default mode is to retreat from people and disconnect from the world, and that disconnect can strain relationships and be misconstrued as arrogance (it’s really about fear). But I keep trying. When I’m aware I’ve done harm, I apologize. And I keep going because I refuse to sit on the sidelines of life watching possibility pass by.

I have yet to meet a spirit guide on this vision quest of mine. But, hey, I’m open. Until then, all I can do is keep taking care of myself the best I can, continue taking on this moment and the next, and so on, and be grateful for what I have right now.

Hopefully, that’s enough.