The Change We Cannot See

I’ve long said that a change in perspective can do more for my mood and gratitude than any material object. I go to the woods to shift perspective often. Sometimes, I’m feeling bogged down by work, social obligations, or maybe I just haven’t had enough sleep. I hit the trails to reset and get a fresh angle because I always have running.

Or so I thought.

If you’ve been running long enough, you know the frustration of being sidelined by an injury. In the fall of 2014, I raced until mid- October, and 2 weeks later I was on crutches, unable to walk, let alone run until February 2015. I worked hard at my nutrition and physical therapy. I cried, literally and figuratively, on many shoulders as I found new coping strategies to take the place the running held for my mental health.

Two steps forward, one step back, I increased my mileage again. Soon, I was moving forward all the time, and: It. Was. Awesome. That summer, I was so happy, I don’t think I paid much attention that there was something going on with my vision. It was sunny, and I just assumed I was having trouble adjusting from light to dark, running through the woods.

The cloudy fall and winter came and went, I trained well and kept up my physical therapy and nutrition to keep my body strong. I signed up for races in January (in Oregon), February (in Arizona), April (my first 50K!), and July (Mt. Adams in Washington). I was so excited to have my body back, I started pushing more. In Sedona, I ran almost every day, and I noticed that I was stumbling a little more than usual, that my depth perception seemed a little “off”. I made a mental note to make an appointment with the eye doctor when we got back.

I trained pretty well for the April 50K, but again, race day was sunny, and I noticed my vision getting a bit wonky, especially towards the last 7-8 miles. I attributed it to fatigue and/or electrolyte issues, but made the appointment for 3 weeks later.

I saw the same doctor I had seen 5 years before, during my second pregnancy. I very suddenly lost 50% of my vision in one eye during the pregnancy, and I thought I must be experiencing something related to that episode. I regained vision after 2-3 weeks, so I wasn’t super worried about my eyes.

I had my exam, and left with a referral to a retinal specialist. What the doctor saw on the exam was out of his scope. I’m a PCP. I know what this means. I hate this sort of thing. I don’t mind being a little bit quirky, but at no time is it ever my desire to be medically quirky. I’ll stay medically boring-thank-you-very-much. I already have a moderate hearing impairment, so I rely heavily on visual cues to navigate the world.

Over the course of the next few weeks, I became seized with moments of utter anxiety, on and off the trails. Is this really as bad as I think? Did my brain make this up? Retinal problems are NOT GOOD. The morning of the appointment with the retinal specialist, I went for a run. I took in the green, the sun, the dirt, the blue of the sky, all of it. And then it was like pre-race jitters, and not in a good way. Multiple trips to the bathroom. Hearing my heart in my ears. Waiting in the waiting room with the geriatric crowd, the people who are supposed to have retinal problems, I think about where I’ll run next. I have to run all the time. Run every day. What are they going to find? What freaked the eye doctor out to the point that I’m sitting here? I will run every day. I will never take the views for granted. I’ve already started thinking this way.

The medical assistant brings me back, dilates my pupils, and I hit the bathroom again. I have my exam, and indeed, there are dark spots on my retinas. The doctor is careful with her words. I know this cadence. I’ve had to give patients bad news plenty of times.

I have her repeat a few of the things she’s said. I’m taking it in as a doctor (logistics) and as a patient (shock and terror). Yes, we have to rule out Retinitis Pigmentosa. I know what that is. I know someone who went completely blind in 5 years. I know what that is. I want to get home as fast as I can so I can look at my beautiful babies. I want to kiss my husband and just sit in our garden. I call my two best friends, who are also doctors, and we share a shocked silence on the phone. I call my mom. That night, I cry in my husband’s arms. There are so many things I want to see. I want to see my kids grow up. I want to see my grandkids. I want to see my husband grow old with me. I want to see rainbows after storms. I want to the sun dunk below the horizon at the beach, counting down the last few minutes of daylight. I want to see the sun rise over Mount Hood in those precious moments we get before the clouds hit. It doesn’t feel fair to not be able to hear or see very well.

My world changed overnight. It’s never actually reverted because you can’t unsee a future forever altered, once you’ve had a glimpse. My diagnostic testing wasn’t until 3 weeks later. THREE WEEKS, I had three weeks of wondering whether I was going blind or not. I ran. And ran. And ran. I had a women’s trail marathon with a group of my very favorite trail sisters the week before I went to the hospital. I hadn’t told any of them yet. The night before the race, we were all camping out, and I decided to go ahead and share. I had made a lot of peace with the possibility of going blind. I would not die from going blind. My life would change, but it would not end. I had fairly extensively searched the web for blind trail runners, and even found a few people in my exact position. I had even done some trials of running with my eyes closed and found it to be an exciting new challenge.

I am so lucky to have a solid trail sisterhood. Sharing my pain and frustration that night lightened my load. They said they’d guide me with ropes and trekking poles, keep me on the trails, and make sure to wipe barbeque sauce and mud off my face if need be.

The next day we ran. I have never felt so out of my mind happy. Twenty-six miles passed quickly. My gratitude for the sheer loveliness of the terrain and the women running carved a deep and lasting groove into my very core. I ran, taking it all in in a new way, the way you linger with a loved one before a long good bye. I know the course. I’ve run the race 5 times. I committed as much of it to memory as I could, and smelled hard to string my senses together.

Later that week, I my pupils dilated yet again. The world went entirely blurry, yet again. The nurse injected fluorescent dye into my veins and I got treated to a 20-minute light show that was borderline psychedelic, while they scanned my retinas for deterioration. The tech and I joked around. I told him I would have taken a few shots of tequila and brought my headphones blasting Phish if I knew I was going to have such a trippy experience.

The retinal specialist came in and had a look at my results. I brought my notebook and a pencil this time. I wanted to write everything she said down (which proved to be really freaking hard with my pupils dilated). She said the pigmentation was stable. She said my retinal blood flow was excellent. She said I only had a 10% chance of developing Retinitis Pigmentosa, but I’d need to come back in 12 months before she could say for sure.

After I left the hospital, my vision started to sharpen again. Since I was only a few miles from one of my favorite trails, you can guess what I did. I ran. I ran for being able to see. I ran because we aren’t guaranteed a single day longer than what we have just done. I ran because life can change on a dime. I ran for the 90% chance I’d see my children grow up. I ran for the sisterhood I have in running. I ran for the deep trust I feel that even if I do go blind, I’ll still run. I’ll still have community in this sport. The challenges will be different, but I know I’ll still be standing.

About the Author:

Amanda is a Naturopathic primary care doctor providing Portland Oregon area families with holistic, effective, and creative ways to bring health into balance. Her work jam is holistic pediatrics, women’s endocrine regulation, and trail-running & endurance medicine.  Outside work, she hits the trails before sunrise, stays warm in a rainbow terry cloth track suit, and is raising 2 half-Kiwi kids with her Kiwi husband.