Kristie Bergna has lived most of her life playing the “wait and see” game with her eyesight. At 7, she was diagnosed with keratoconus in her left eye. Keratoconus, a progressive eye disease that causes a person’s cornea to bulge into a cone-like shape causing distorted vision, was considered a sentence for eventual blindness in 1993. Kristie grew up with the understanding that one day she would lose her eyesight.
At age 28, Kristie’s vision was degrading faster than her contact lens prescriptions could keep up. At a routine appointment with a new ophthalmologist, she learned she was legally blind. She was given contact lenses that would serve as a short-term solution to assist her with her vision.
Four years later, Kristie found herself racing to an emergency appointment at UCSF where she was diagnosed with acanthamoeba keratitis, a parasite that invades the cornea. Treatment for acanthamoeba left Kristie in debilitating pain and dependent upon others for care. She was filled with rage and struggled to turn inward for peace and safety when the rest of the world around her felt violently chaotic.
Did being declared “legally blind” at age 28 change the way you (pardon the expression) looked at the world?
Yes, it changed things drastically. The doctor knew he could get me contact lenses that would help me be able to see. Because he had a solution, he didn’t contact the DMV to get my license revoked, which is what he was supposed to do. The contact lenses he wanted me to wear were fairly new to long term use, so there was no guarantee on how many years they could be worn safely. He warned me that there would come a point when I wouldn’t be able to wear them anymore, and if my eyes had degraded far enough that I couldn’t have surgery, I wouldn’t have any options to help me see. He didn’t know how long this would take. The contact lenses were an extension of temporary eyesight.
His diagnosis very much changed how I looked at life. How am I going to manage the day to day activities that are required of being an adult?
It sounds like your reaction was very pragmatic. Was there an emotional component as well?
Yes. It was very much like going through a grief process. Every single person I talked to responded with, “You already knew you had really bad eyesight. All that happened is that someone told you that you’re blind. I don’t understand what there is to grieve.” It was very odd because in a normal grief cycle you would have support from other people, but nobody acted as if anything had changed. But to me, everything was different. Now I fully understood the limitations of my eyesight and had to think about how to shift my life.
I believed that I had eyesight at the time of that appointment. My vision degraded so slowly over so many years that I didn’t know that what I was able to see could be categorized as “blind.” It was like I lost my belief in my eyesight, that I even had eyesight.
I understand that feeling. That’s what being diagnosed with depression felt like for me. I thought that I was operating in the world and thinking about things “normally,” until a doctor looked at me and said, “No, ma’am. That is not how everyone in the world operates. You have an illness.” It’s like, in that moment, there is a severing from what you thought you knew and what you now know.
You had another moment of sudden severing with your eyesight this past summer. What happened?
My left eye, my better eye felt irritated and the feeling didn’t go away. I saw an ophthalmologist in Monterey who thought it was dry eye. After a week and a half of treatments that didn’t work, he referred me to another local doctor who is a cornea specialist.
This was the hardest day of treatment over all. I’m sitting in a doctor’s office that I don’t know and I’m in a lot of pain. I can’t see anything because I can’t wear my contacts. I’ve never met this doctor before. He is throwing a million questions at me and then making me feel like I’m answering them incorrectly. Then he says, “I think you have acanthamoeba,” but doesn’t tell me what that means. Then he left the room without saying anything else to me. He came back 10 minutes later and told me I had to go to UCSF. This was an emergency and the doctors at UCSF were waiting for me.
My boyfriend drove me to UCSF immediately. I spent the day there with more poking and prodding and scraping and machines and lots of doctors and again – not being able to see anything. They diagnosed me with acanthamoeba in my left eye.
At about the same time, I began feeling some irritation in my right eye. Acanthamoeba, before me, had never been clinically diagnosed in both eyes in one person. The medical team kept telling me that my right eye was just irritated and gave me steroid eye drops to treat the irritation. A month after that, they scraped my cornea and diagnosed acanthamoeba in both eyes.
What is the prognosis for your eyesight with an acanthamoeba diagnosis?
It depends on when they catch it and the health of your cornea. I had been on a treatment of steroid eye drops for the irritation in my right eye, which activated the acanthamoeba spores. With the keratoconus and the acanthamoeba, they weren’t terribly hopeful about my right eye. About a month into treatment they realized the damage was so extreme that I would need a cornea transplant.
For the left eye, because they caught it early, they were able to treat my eye in a way that I didn’t need a cornea transplant.
What kind of emotional toll did it take when you no longer have the ability to see, you have an extremely painful disease, and you have to give up your control in the situation and turn it over to a team of doctors?
In one way, I was lucky. I had already been through the grief process with my vision before. Most people thought the hardest would be losing my vision. But I was given the worst-case scenario I had already been planning for over the last 4 years of my life.
The main emotion I felt was a lot of rage. I wouldn’t even call it anger. It was absolute rage. I was so angry about being helpless, not because I was blind because I always knew this was a possibility, but you don’t realize how helpless you are going to be with the kind of pain I was in.
I already had my apartment setup so I knew where everything was located by feel because I could only wear my contacts for 12 hours at a time. The pain made it so I couldn’t get out of bed and get the things I needed. People had to come over and help me, but they weren’t able to put everything back in place exactly as it was before. I would have moments where I knew I needed to be grateful for and kind to the person who was helping me but I was also so angry that they didn’t put my fork back. Now, when I’m on my own, I don’t know where my fucking forks are and I’m home alone eating with my hands.
I couldn’t feel so much rage all the time so I would fall into detachment. My brain would shut off and I’d be numb to everything around me until something new happened and my rage cycle began again. There was too much pain for me to use yoga and meditation to find a safe space.
How would you describe the role meditation and yoga played in your life before the acanthamoeba diagnosis?
I started practicing yoga with my mom when I was 14. I think she had me start practicing because I had a lot of anger, rage, and volatile emotions. Yoga lets me access those emotions without them becoming overwhelming. The difficult part for me, I think because I do have very large emotions, is that I always need to go through the physical steps of yoga to reach a place where my mind is still.
I was in so much pain that I couldn’t move enough to practice even the most basic yoga postures. I couldn’t sit on the ground in a cross-legged posture and do a twist. There was no way for me to get to the meditation which had helped me be able to access my emotions without being swallowed up by them.
When people hear stories like yours, they want to know you persevered against all odds and reached the inner stillness of your deep lake leaving your rage to ripple on the surface. But sometimes that is just bullshit.
Yah, it’s absolute bullshit. If you ask any meditation teacher, they will tell you that the way I found meditation again was absolutely NOT what you’re supposed to do. I started using walking meditation, which was actually pacing in my very small apartment. It wasn’t a slow peaceful step. It was frantic pacing back and forth because that was all I was able to do. I don’t know how far along you need to be in your practice to access stillness in the most painful moments.
I was never under the impression that yoga and meditation would take away the pain. But I knew they could help me stop fixating on it. I had used yoga and meditation to find stillness before and trusted that it would work again, which made me more willing to try to keep working with these tools when I was still in pain.
J: That’s a great point. Yoga and meditation aren’t the cure, but they are very important tools. As with anything you need to practice using them in order for them to be available to you when you need them.
K: And trust them. I think when you haven’t seen them work before, you aren’t going to use them when you’re at your very worst point.
Let’s talk about everyone’s favorite catch-all phrase: Acceptance.
I’m going to steal from Mark Coleman who is a teacher at Spirit Rock and say, “if we could accept it or if we could let it go, we would do that. How are those useful phrases to say to anyone?”
A lot of people have encouraged me to find acceptance with this situation. It’s really hard when you’re struggling with something to tell yourself, “This is just how things are now. I will live peacefully with equanimity.” Everything about this situation totally sucks. I have to live through it and use it to move forward. But I can’t just sit here with total equanimity, “This is not a problem. It’s ok that I’m in intense pain and lying on my bathroom floor. This is where I’m meant to be today.”
People come from a good place when they tell you to let something go or to practice acceptance. I don’t think they’re trying to be hurtful. It goes back to our society as a whole, we aren’t in touch with our emotions and we don’t know how to respond when someone we care about is in pain. When we’re in a situation of discomfort, we rely on what we’ve heard other people say. We use rote phrases like “find acceptance” or “let this go.” It’s really just a lack of being in touch with emotions and how to interact with people who struggle.
When I told my friends you had acanthamoeba, their number one response was, “How blind is she?” Did this happen when you shared your diagnosis with other people too?
I struggled with that. People would ask me the same thing. I actually Googled “blindness” because I thought maybe I wasn’t as blind as other people so maybe I didn’t deserve to say I was blind. I found myself saying, “I’m not really blind. I can see blurry images and some color. I just can’t really see depth,” in hopes of making other people feel better.
What I found when I researched blindness is that a very very small percentage of blind people cannot see anything at all.
So we have a misconception that blindness equals a black cave of darkness with no connection to a visual world around you?
Yes. What really happens is you start to lose clarity, colors, and focus. It affects every blind person entirely differently. That was really helpful to learn because it allowed me to accept that I really did have vision issues and I was better able to educate other people. People were very open to question my ability to see because to them, I appeared to be higher functioning than what they expected.
This is so interesting to me. If you shattered your leg in a terrible accident and you had to go on disability for a month, nobody would ask “Mmm, but how broken is your leg?” Whereas you and I went through a very similar process because people asked us to quantify our illness. I started to wonder am I using my disease as a crutch? Am I making it up? Is it not as bad as I think it is?
What do you think – is it just impossible for people to accept that their lived experience is not the only lived experience in this world?
I say this based on my own experience. I think that some things are so foreign to me that I can’t even picture someone having to live that way. But I have been questioned often enough about my own experiences that I have learned to trust another person when they share their experience with me.
A lot of this goes back to not being able to engage with emotions. There is a divide among people in my life. The people I know from meditation and yoga practices and the people I know who have lived through similar circumstances, are the ones that are a little bit more in touch with their emotions. They are also the only ones who have continued to check on me after my cornea transplant. The other people I have in my life from work, or running, or other acquaintances, as soon as the eye drops for acanthamoeba stopped, all questions about my health stopped. They considered me cured and were ready to move on from this.
There’s this very divided notion that when someone is a member of any type of marginalized community, it is either part of the problem to acknowledge the identity marker or part of the solution to acknowledge the identity marker. I know that therapists don’t like people using their diagnosis as an identity marker, but I don’t know how not to. Mental illness changes how I function in this world. What side of this debate do you stand on?
I think the identity marker is helpful because being blind does change how I engage in the world. Nobody in my life but my family members and my oldest friends had any idea that I had vision problems until the acanthamoeba diagnosis. It was so embarrassing to admit that I had vision problems at a young age. I didn’t want being blind to be part of my identity when it really was. I thought if I didn’t tell anyone about it, then it wouldn’t impact my life. But that’s not what happened. I had to admit to blindness to let it become part of who I am so I can navigate my way through this world.