Retinitis pigmentosa (RP) is a group of inherited eye diseases that cause degeneration of the retina’s photoreceptor cells. The condition usually first manifests itself as a loss of night vision, followed by diminished periphery eyesight and, eventually, blindness. It’s slow-moving, so an early diagnosis can mean years of uncertainty while one waits to see if he or shewill actually lose their eyesight. There’s no cure, but there are experimental treatments and small clinical studies being done, including an acupuncture study recently spearheaded by eye acupuncturist Andy Rosenfarb and researchers at Johns Hopkins University.
Science of Us recently spoke with Ingrid Ricks, a 47-year-old woman who lives in Seattle and was diagnosed with the disease in 2004, about her experiences.
How did this condition start?
When I was in my late 30s, I became a little clumsy. I’d bump into things and wouldn’t recognize people on the street. My eyesight was always fine, except I haven’t been able to see in the dark since I was about 18. In 2002, after the birth of my second daughter, I went on a hike and I kept tripping up. Then I sideswiped a car on the freeway, and during a game of racketball with my husband, I couldn’t see balls that were whizzing right past my head. I made my first-ever eye-doctor appointment when I was 37 years old.
What was that initial visit like?
At first they couldn’t find anything wrong, and then the doctor looked at the back of my eyes and went totally quiet. I tried to make conversation, asking him whether everything was okay. And he said, “Well, no. It’s not.” He said it looked like retinitis pigmentosa, but he wasn’t sure because he’d never actually seen it. He said there’s nothing I could do and went into another room and printed out an informational document. That night, [we] found a website that described the way that the disease progresses. It said that you’d end up legally blind by age 40 and then lose all remaining eyesight by your mid-50s. I remember thinking it had to be a misdiagnosis. I’m not going to go blind.
Do you think you were in shock or denial at that point? How’d you confirm that you have the disease?
I wasn’t worried at all. The next day I went back for a visual field test, the one where you stare at the dots and they give you a clicker. I thought the assistant was young and spacey. When she started the machine, I couldn’t see any dots, and I was annoyed with her because I felt like she couldn’t do her job or the machine was broken. She went and got the doctor. He showed me images representing what my eyes could see. They were dark with a small circle in the middle, and [he] told me that I was already legally blind. I just remember running out, getting in my car, and going home to cry in my basement.
Were there further tests?
I went to see a retinal specialist. The waiting room was full of scary-looking old men and women with eye patches and canes. The doctor propped me up like a monkey so he could get a good look at my disease-addled retinas. A group of observing students trailed in, and he’s explaining to them that this is an advanced case, as if I were a lab rat. They did a test where they place contact lenses with wires on your eyes and then they put you in a dark room and measure the electrical currents — it was a shocking scene.
The doctor really only addressed my husband. I asked him what resources or treatments or vitamins there were available, and he said, “I’m sorry, but the nearest medical advancements are at least 20 years out.” He scribbled a number for the Center for the Blind on a piece of paper and left the room.
How did you feel at that moment?
I was in shock, but as he was leaving, I called out after him, “What about driving?” He looked at me and said, “You seem like an intelligent woman: What do you think?” My entire world was ripped from me. From age 13, I spent summers living on the road with my dad. We drove his truck around the country hustling tools. My home life was awful, so driving became key to my sense of freedom.
What was going on at home?
I grew up in northern Utah in extreme poverty and religion. My dad was on the road for long periods of time, and when he was around, things were volatile. My parents divorced when I was 12, and six months later, my mother got together with a Mormon man who used his religion as an authoritarian weapon. He once pinned me down to exorcise Satan out of me.
So you spent summers with your dad to escape your stepfather?
He really became my savior and my lifeline. I joined him the summer after my 13th birthday. The day school got out, he picked me up and we headed for Dallas — his base at that time. We lived out of his truck and cheap motels with only two rules: No eating breakfast until we’d sold our first $100 worth of tools, and no pudding until we’d sold $500. My dad didn’t pay child support but he gave me and my sisters our own cars when we turned 16 because he said it would set us free.
So, back to that visit with the specialist: Is that when it finally sunk in, that you were facing the prospect of completely losing your eyesight?
I spent the next two weeks crying in my basement. I was dwelling on all the things I wasn’t going to be able to see or do.
How did you pull yourself out of that initial spiral?
A few weeks after my diagnosis was confirmed by the retinal specialist, I went to South Africa to write about AIDS orphans. It was a dream assignment I had to take. I remember [being] on the plane, thinking, This is probably the last gig I’ll ever get like this. Who wants to hire a blind journalist? The point of a writer is to report what they see.
I’m impressed you had the strength to go on the trip, especially alone, given what you’d just been through …
I started my career as a print journalist but had fallen out of it and got stuck in the lucrative but soulless world of marketing communications. I was desperate to get back into the kind of writing that I cared about, and this was the break I’d been waiting for.
What was the trip like?
I saw adolescent boys building coffins by the side of the road — just one devastating situation after the other. I saw a 19-year-old girl sitting in the sun on what looked like a white plastic sheet and a boy who was about 2, my daughter’s age at the time, leaning against her. She had a baby on the other side of her. I asked what she was sitting on, and the relief worker I was with said it was a body bag. She told me the girl was waiting to die alone.
Then she motioned to the little boy and the baby and told me they were her kids and they also had AIDS. That moment gave me real perspective. I realized I hadn’t been issued a death sentence — I’d been diagnosed with a slow-moving eye disease. When I got back home, I changed by life.
What did you do?
When I was diagnosed, I was living a life I didn’t enjoy. It was just money, money, money, money. We moved to Seattle from a rural mountain town because we knew we couldn’t stay living there if I couldn’t drive. I had to be able to walk or use public transport. I’d had an idea for a book but had always put it off because I had two little kids and a lucrative income from marketing. But I knew that writing was what I had to do. My husband, a lawyer, would be gone up to 14 hours a day. When we moved to the city, he quit his job and started his own firm in our neighborhood, so now we get up together every morning and see our daughters off and walk to the office together. I do my work in his office and we share lunch. We simplified our lives and realize that material things don’t really matter. I became more focused on experiences than belongings.
So, how has the disease progressed?
It’s been 11 years now. When I was diagnosed, I had a ten-degree circle of clear central vision, with a little half-moon sliver of vision at my mid-periphery around the 60- or 70-degree mark. I used to be able to look at my daughters from across the table and see them clearly. Now I look at them and I can only see part of their faces. I used to say it was like looking through a hole the size of a silver dollar, but my eyesight has changed since I’ve been pursuing alternative therapies, so it’s more like looking through a mailbox slit — my central horizontal vision has expanded but not my top and bottom central vision. What’s been interesting is that my outer peripheral vision has expanded considerably since I’ve taken an integrated health approach to my eyesight. I now see more out there than I do through my central hole.
What prompted you to pursue alternative therapies?
I went to California in 2008 to see a person who deals with whole-body health, and the first thing he said to me was, “Tell me about your childhood.” And within a few minutes I was sobbing.
Aside from the trauma at home with my stepfather, when I was 16, my dad was arrested at gunpoint in front of me for floating checks. It was 5:30 a.m. and we were driving down a freeway, belting out “On the Road Again” — our favorite song. A police officer pulled us over for speeding. I could tell my dad was nervous while they were running his I.D., and the next thing I saw was the police officer pointing a gun at my dad’s head and pulling him out of the car. He was ripped away from me.
The crime was committed in Texas, but we were in Illinois. The officer told me that he was probably going to be extradited and I’d go into foster care unless I could figure out a way to get home. Both options were horrible. I was a minor, so they wouldn’t let me wait in the county jail where they were holding my dad. They gave me his wallet and said I could get a motel room, but I told them I wasn’t going anywhere without him. I waited all day in our hot car, occasionally running up the hill to a fast-food place to throw up. Finally they let me go into the courthouse to hear his fate, and I saw him in this orange jumpsuit in chains. I’d always regarded him as larger than life, and he looked so small and lost. When the judge said he should be extradited, I jumped up and yelled, “No!” The judge felt so sorry for me, he let my dad out on fugitive bond.
Were you carrying that trauma around for a long time without ever talking to anyone about it?
I learned from this doctor that you might have a faulty gene, but often what triggers retinitis pigmentosa is environmental factors and stress. In fact, both my sisters have had their own forms of stress-related illness — severe asthma and a stomach ulcer. The idea that holding this trauma inside could be causing me to lose my eyesight was such a huge kick in the pants, it made me write my memoir. I now work in schools with teens, using my writing as a guide to help them find their voice and power by telling their stories. I started a program with an English teacher, which was so powerful that we launched an organization called Write to Right that fosters healing, understanding, and literacy through personal storytelling. I often say, “Get your story out of your system: Don’t let it make you sick.”
I also realized I’d developed terrible eating habits when I was on the road. Each day started with a sugar-free Dr. Pepper, then McDonald’s, Hostess cupcakes, burgers, and fries at Denny’s. As an adult, I moved on to big bottles of Diet Coke — I didn’t eat vegetables. That doctor helped me understand the correlation between emotional trauma and degenerative disease, but I wasn’t quite ready to make the drastic diet and lifestyle changes required.
So when did you commit to alternative therapy?
Two years ago I saw a specialist who was doing stem-cell research. I’d waited six months to go to that appointment, only to show up and have her tell me what I already know: that my eyesight sucks, and while she’s had good results with lab rats, they’ll never get the funding to take it to human clinical trial. Then she told me I had a couple of cataracts forming. At that point it had been nine years. She pretty much told me that I had only three years of eyesight left. I have never been so full of despair. I know that there are plenty of people who are completely blind and are living full lives, but I want to see. I decided it was time to do everything in my power to save it. I’m sure I’ve invested at least $20,000 in alternative therapies, but aside from the acupuncture, everything I do now requires time and commitment rather than money.
Do you have a daily eye-health routine?
I start every day with a large glass of room-temperature water and then make a fresh glass of kale, cucumber, and celery juice. Then I do a 20-to-25-minute, comprehensive eye-exercise/acupressure routine while drinking the juice. I follow this with a five-minute microcurrent stimulation session utilizing a small, handheld device that features wires going to two eye pads that I place on my eyes (held in place by a Velcro strip that goes around my head). The whole routine takes about an hour.
So, as you mentioned earlier, your eyesight has improved?
It has a little bit, which is remarkable. This summer, another retinal specialist I visited could only find trace cataracts. I now have this long, narrow slit that I mainly see through with a doughnut of complete blindness, along with patches of vision in my outer periphery.
When you were initially diagnosed, do you remember what you feared the most, apart from losing your independence through driving?
I imagined myself as this old lady walking down the street with mismatched clothing, looking really awful. But really, my biggest fear was that I didn’t want to be a burden to my husband. That scared the shit out of me. When we entered our relationship, we were both so independent. The idea that I’d be a drain on him instead of a companion freaked me out. If I let myself go there, that’s still my biggest fear. I’ve even told him that if it gets to the point where I’m holding him back, he can divorce me. It makes me sad to even say this to you, but I really didn’t want him to feel like he’d have to drag around his dependent wife.
How did he react to that?
He rolled his eyes and said, “Come on, I’m not going anywhere.”
When did you meet your husband? Did you consciously seek out someone who was different from these male figures you had grown up around?
Absolutely. For a start, he’s not religious at all, and he was very stable and not at all controlling, which is what I needed. When I met him, I remember him saying, “Wow, you’re definitely not someone who needs taking care of.”
So has your condition changed the nature of your relationship?
I’ve learned that it’s okay to lean on your partner, but I’m scared that I could be completely dependent on him. It makes me want to vomit just to say those words. In the last few years, I really faced that this is a reality, it’s not some faraway thing. I could be completely in the dark in three years.
How has it impacted your relationship with your daughters?
I didn’t want them to have to be my caretaker, and I didn’t want them to be ashamed of me. They are now 12 and 15. Ultimately I think it’s impacted them in a very positive way because they have seen me focus on the power of now and going after dreams. They often refer to me as inspiring, and they are very compassionate to people who have special needs.
Do they worry about developing it, too?
Yes. My oldest daughter wrote a poem for class about going into a dark tunnel and she didn’t know if there would be a light at the end. She doesn’t really talk about it, but they say that if you have it, your child has a 50 percent chance of developing it, too. But I just don’t believe that they will. They have such happy, healthy lives.
Can you still see your daughters’ and husband’s faces clearly?
Yes, through the little slit, but if they are too close to me, I can’t see them at all. It’s like looking through binoculars: You need distance to focus. My eyesight has got to the point where I don’t have much left to lose, but what I have left lets me function pretty well.
So you don’t depend on any special equipment?
I have to blow up the mouse icon on my computer screen and increase the text size or I can’t see it, even if I’m wearing reading glasses. I can still read magazines and books — as long as I am wearing reading glasses. I can’t walk at night — it’s like I’m wearing a blindfold, so I need someone to hold my hand and guide me. Stairs are so hard for me to navigate, even with railings. I avoid crowds, and we always have to have all the lights on bright in the house.
There are people who have eyesight as bad as mine who use canes to get by, but I don’t. I’m determined to see. Some people will read this and think, She’s just in denial, but if I put my energy into props and equipment, then I am taking my energy away from my mission to see. I don’t want to be identified as that woman who’s nearly blind. I escaped a strict, claustrophobic, religious home, so independence is at the core of who I am. I just can’t pull out a cane. I never use the B word.
This interview has been condensed and edited.