A Dark Curtain Descends

This is number 9 in the series Vision: A Journey

It was the spring of 2002. I was back at work full time, teaching two statistics classes, attending faculty meetings, and doing my regular academic work. My vision seemed to have stabilized. I was getting used to my new-normal way of living without central vision. However, I did have a tiny island of faint central vision in my right eye, the one that was never treated. My left eye, which had undergone multiple surgeries, had a little more usable peripheral vision. My brain combined these two types of vision, allowing me to navigate my world.

Attending a Convention in New Orleans

Before losing vision in my second eye, I had run for office in my special interest group (SIG) of Educational Statisticians in the American Educational Research Association (AERA). I had won the election, which meant I would serve as program chair for one year and as president for the following year. That meant that during the fall of 2001, amidst the craziness of dealing with vision loss and surgeries, I also had to send out proposals for review, and put together the program for the spring annual meeting. I remember filling every surface of my office with printed-out proposals for papers, posters and symposia, and despairing that I would ever manage the task of having them reviewed and organized into the few sessions we were allotted. There was a lot of paper work to fill out as well, reporting information back to AERA.

I had two ways of reading materials: holding them up close to my right eye (with its island of central vision) in bright light, or enlarging the font on my computer. Both ways were exhausting and I felt I never should have agreed to take on this task. Then, a miracle saved me. My colleague Mike, whose office was next to mine and who had served in this role a few years earlier, stepped in to help me. He quickly read over and sorted the proposals, and helped decide which to select and how to group them. I was immensely grateful for his help.

In early April, I set off for New Orleans, another city I had visited many times and knew the area around the convention center well. My recollection is that Michael came with me, which made it easier to travel.

When it came time for the business meeting, I needed to present the plans for the program and describe the various sessions. In a tremulous voice I told my colleagues that I had been dealing with vision loss and subsequent surgeries. I profusely thanked Mike for his help, and laid out the program. Somehow, I thought the group would think it heroic that I had done this job and come to the conference, despite what I had been going through. I waited for them to acknowledge my efforts to fulfill my job duties, despite all my challenges. To my surprise and disappointment, there were no comments, no applause, and ultimately, no one asking me how I was doing. The meeting ended and off we went to our various sessions. Looking back, I think that people were embarrassed to mention my disability, and perhaps felt it was best to just act as if nothing was out of the ordinary. But in the moment, it did hurt my feelings.

Trip to France

Spring semester ended, and the day arrived for us to embark on our much anticipated trip to France. This trip was to replace the one I was unable to take to South Africa for my beloved conference on teaching statistics. Rebecca, our daughter, was going to join us in France, as well as some friends and my sister and her husband. We spent a few days in Paris, then took the train to Avignon, picked up rental cars, and went to our huge rented stone house surrounded by lime trees and lavender. It was a wonderful trip filled with everything I loved: great food, wine, colors, markets, and spectacular scenery. It felt like a nice reward for making it through a difficult and challenging year.

I fell in love with Provence and could not wait to plan another trip there. I was hardly aware of my vision loss during my time in France. Of course, it helped that Michael and Rebecca were by my side. I do remember listening to a book on my little cassette player while we were on the train, and at night. And I was still taking eye drops to keep the pressure in my eyes under control. But other than that, this trip allowed me to be more caught up in the beauty of Provence and less focused on my vision loss.

The Dark Curtain

A few weeks after we returned home from France, I noticed a dark brown “curtain” at the top of my left field of vision. After a few days, it seemed to be getting bigger, so I called Dr. Terry’s office. I was instructed to come in immediately. Once again, I spent a long time in his waiting room. But once Dr. Terry examined me, he told me that I had a detached retina in my left eye. He did not seem surprised, and thought it was due to the steroid shots he had injected in that eye the previous summer and fall. If untreated, I could go blind. I was booked for surgery the following day.

The next morning I checked into the Phillips Eye Institute. For the surgery, an IV was inserted to my arm to provide anesthesia to numb my eye (so I could not see out of it at all nor feel any pain) and to sedate me. I remember Dr. Terry telling me that he had to cut off my eyelashes, which made me sad, as I have always liked having long lashes. He said they would mostly grow back over time. They did, but were never as long as they once were.

I remember drifting in and out of consciousness, not feeling any pain. At some point I became aware that Dr. Terry was operating on my eye while talking to the nurse assisting him. They seemed to be talking about traveling to New Zealand. “I’ve been to New Zealand,” I piped up, attempting to join the conversation. Dr. Terry patted my shoulder and said, “Just be quiet now.” So I closed my mouth and drifted back into unconsciousness.

Back at home, Harlan arrived from the camp where he was working to be with me as I recovered. And Rebecca was on hand to nurture me in her gentle, loving way. The worst job was given to Michael. He had to open my eye a few times each day and squeeze in different drops. He is normally squeamish, and dealing with an eye that he said looked like chopped meat was a challenge for him. He steeled himself each time, gritted his teeth, and did his best. To this day, I thank him!

I had to see Dr. Terry the day after surgery so he could check on the status of his intricate reattachment of my retina. I may have had to wear a patch for a while, but I don’t recall. I just remember lying on the couch, aware of people coming and going around me. Harlan was nearby, assembling a wooden wine rack that he had given to me for my birthday. I was relieved to be home and that the ordeal was over.

Summer

Somehow, the days passed and my eye healed. A few weeks after the surgery, we were on a plane to New York. Michael’s grandmother had died the previous year, and we were now going to the unveiling of her gravestone. It was hard to believe all that had happened in the year since we attended her funeral.

On that visit, I remember sitting on the couch in the living room of Michael’s mother’s house, telling his brother and sister-in-law the story of my detached retina. My eye was still red and my eyelashes were gone, but other than that, I was feeling okay.

Red Spots

My brother Stan organized a long weekend gathering on Lake Michigan for him and his wife, my sister and her husband, and Michael and me. This was the first time we would be getting together since my vision loss and surgeries, and I looked forward to being with my family. Stan rented rooms for us in a charming guest house near the lake. We spent two relaxing days at the beach luxuriating in the sun, sand and perfect summer weather. During the drive back to Minnesota, I started scratching what seemed to be a bite on my chest. The next day I became aware that the red spot was getting more irritated and spreading. I had had a similar rash 25 years earlier, and it had lasted six weeks, turning my life upside down. No one had ever been able to determine the cause. Now it seemed another horrendous rash was settling in. I was terrified, and called to make an appointment with my doctor.

The rash was spreading all over my body in big, red, itchy blotches. My doctor gave me some topical ointment and recommended I see a specialist. I was able to make an appointment to see a dermatologist, agonizing each day I had to wait for this appointment. The doctor was puzzled by my rash, and took a skin sample to send to a lab to try to determine if the rash was caused by an organism, possibly picked up while swimming in Lake Michigan.

The lab provided no answers. Where had this mysterious rash come from? I was in extreme discomfort. The dermatologist prescribed a heavy dose of an antihistamine to take orally that made me sleepy, so I had to drink lots of coffee to get through the days. I also applied huge amounts of a very potent steroid cream. I took oatmeal baths to soothe the itching, lathered on cream, took the pills, and waited for the rash to stop spreading. The red dots had turned into a sea of red covering my entire body, except my face.

Later, I would figure out that the rash was caused by extended exposure to the sun while taking the post-surgery eye drops that contained sulfa, an antibiotic. Although no one had warned me, I later read that exposure to the sun could possibly cause a reaction which included a rash. Well, it certainly did!

The rash was getting better but still bothering me when I flew to Madison, Wisconsin for a project meeting. This was the launch of a new grant headed by my good friend Cliff. I was on the advisory board along with several other friends. I always loved visiting Madison (where I had graduated from college) and enjoyed working on projects with Cliff. However, I remember suffering itching and drowsiness during the meetings, and it was often hard to concentrate on discussions.

To my great relief, over the next few weeks the rash began to fade. Summer progressed, with three more professional trips and presentations. What was I thinking? As I look at my CV and see all the entries for 2002, I wonder why it never occurred me to say no to invitations, to cancel my attendance at conferences, and to give myself time to recover and rest. Somehow, it seemed important to me to prove I could still be peaking career-wise, continuing to excel and achieve in my professional work.

At the end of the summer, it was time to take Rebecca to college. After delaying a year, she was ready to start her studies at Earlham College in eastern Indiana. We would drive her there and help her settle in. Rebecca and I had spent so much time together during the previous summers and school year that I dreaded our separation. Now Michael and I would have an empty nest for the first time in almost 20 years. And so the next chapter of my life began.

Next post: Losing my island