This Can’t Be Happening to Me!

This is the fifth installment in my blog Vision: A Journey.

After my right eye stabilized, in the fall of 1999, life became normal again. I worked hard, taught classes at the University, wrote articles and grant proposals, and became more active in my professional organizations. I was helping to plan the next International Conference on Teaching Statistics (ICOTS) to be held in South Africa in 2002 and was also planning (with my co-chair, Dani) a second international gathering of researchers studying Statistical Reasoning, Teaching and Literacy (SRTL) to be held in Australia in the summer of 2001. I felt good about my life and busy career. On my 50th birthday, in May 2000, I treated myself to my first nice car, a silver Subaru Forester. Little did I know that I would have less than two years behind its wheel.

The summer of 2001 was especially packed with activities. In early July I attended an historic meeting in Columbus, Ohio to plan the launch of the Consortium for the Advancement of Statistics Education (CAUSE), a project near and dear to my heart. Afterwards a colleague gave me a ride to Cleveland so I could visit my sister, who was recovering from surgery.

While sitting in the waiting room, staring at the walls during Ann’s follow up doctor’s appointment, I began to notice some small distortions in the vision in my left eye. I wondered if this “good” eye was starting to deteriorate as the right one had two years earlier. I called my clinic at home to make an appointment, and was scheduled to see the retinal specialist, Dr. Terry, who had been on vacation when I needed an appointment in 1999. I flew home to Minneapolis, full of apprehension about what might be happening to my left eye.

A New Doctor

I don’t remember much about that first visit except that Dr. Terry confirmed my worst fear: my left eye showed active bleeding on the retina. Myopic degeneration was now present in my good eye. I was devastated. Once again, I feared my life would change in more ways that I wanted to imagine if I could not see clearly with at least one eye. This was especially disheartening because I had taken on so many commitments in my professional life. Dr. Terry decided to wait and see how things progressed, but told me in no uncertain terms that I needed to cancel all my travel plans that summer. I could not believe this was happening to me, and that my carefully made plans were to be aborted.

Cancelling Travel Plans

There would be no trip in July to Australia for SRTL. I was heartbroken. It was hard to call the airlines and cancel my flights, and go online to cancel the enticing hotels I had booked for some extra days in Sydney. I had requested and received international travel grants from my college and university which I now had to return. I wondered with dismay if I would ever be able to get such grants gain. Hardest of all was telling Dani I would not be by his side to lead the meetings. I tearfully called Israel to tell him I would not be coming to Australia. I’m pretty sure his response was “Oy vey. What shall we do now?”

There would also be no trip to Atlanta in August for the annual meeting of my statistics organization, the American Statistical Association (ASA), where I was to be made a fellow. I had felt quite honored to be nominated and then to learn I would be made a fellow. The ceremony was an event I was greatly looking forward to. This was especially disappointing because Michael was to have joined me and because Dick Scheaffer, the ASA president giving me the award, was a valued colleague and friend.

Steeling myself to deliver the news, I emailed some of my ASA friends that I would typically meet for dinners and lunches to tell them I would not be traveling to Atlanta. We decided that Michael would still go to the meetings because as a statistician, there were sessions and workshops he wanted o attend. Rebecca would keep me company at home.

I did not think to notify the ASA that I would not be attending the fellows’ ceremony. Later Michael reported that when my name was read, to everyone’s surprise he walked on stage to pick up my award. I had assumed that Dick knew what was happening to me and that I would not be traveling to Atlanta, but no one had informed the ASA. How embarrassing!

Treatments Begin

I began regular visits to Dr. Terry’s office. He was an extremely busy doctor who saw all types of patients, not just those with retinal problems. As a result, his waiting room was always full and I had to wait long hours for each appointment, no matter when it was scheduled. Rebecca had just graduated from high school. She had a job with flexible hours, so she often ended up driving me to my appointments. She would sit with me in the waiting room, keeping me entertained by reading the jokes from the many outdated large-print copies of the Reader’s Digest laying around. Soon she had chosen one couch to be her preferred place to wait, and often told me she wanted a plaque naming it as her couch.

I became used to the new routine at Dr. Terry’s office. A friendly receptionist knew me by now and always cheerfully checked me in without me needing to announce my name. A staff person who also knew me would call my name and take me back to have my vision checked using the eye chart, and to have my eye pressure measured. Then would come the dilation drops. Often I would be taken back to a small office where another friendly staff person would insert an IV into my arm and inject dye for the routine (ha!) fluorescein angiogram. This became my world and these people became my friends. However, Dr. Terry, though cordial and helpful, always seemed more formal and remote with me. Regardless, over the next few months he tried everything he could to help me, and always made room for me in his crowded day whenever I called with the news that my vision was worsening again.

As the summer proceeded, my feelings alternated between disbelief that my body was sabotaging my plans and my active life, fear of losing more vision, and frustration with the lack of an effective treatment. It is hard to remember what else I did that summer between visits to the eye clinic. I kept hoping that my body would heal itself, and my vision would return. After all, every other time I had suffered an injury, illness or operation, I had recovered.

Dr. Terry was very concerned about my possible loss of all central vision and how it might impact my job as an academic. As I watched my vision increasingly worsen, I feared returning to work in September. I would exclaim from time to time, “How am I going to teach this fall?” I worried that I would be unable to read my texts and notes, to see my students’ faces.

Over the next several months Dr. Terry tried everything possible to stop the blood vessels from breaking through my retina and bleeding, leaving irreversible scars and causing vision loss. And so the treatments began. The first was a laser procedure. Just as Dr. Bhavsar had suggested, Dr. Terry thought a laser might help contain the spread of more blood vessels.

By now I was so afraid of losing more vision that I decided to give the procedure a try. Although it was a fairly routine in-patient surgery, I was terrified that it might cause more damage instead of being helpful — there were no guarantees.

The night before the procedure, my parents and siblings called to wish me luck. I remember telling them that it was possible I might not be able to read, or drive again, voicing my deepest fears. I appreciated the love and care extended to me as I prepared for the argon laser beam that might either help or further deteriorate my vision.

On the day of the surgery, Michael took me to the clinic. After my eye was dilated and I had spent a long time in the waiting room, Dr. Terry took me back to a room filled with laser treatment machines. I was to endure many hours over the next year in that room.

I was instructed to put my chin into a metal holder and rest my forehead against another metal device; then something was placed against the back of my head to keep it in place. Dr. Terry told me repeatedly, “Don’t move.” I sat rigid with fear that I would inadvertently move, causing the laser to miss its mark. With one hand he held a plastic disc in front of my left eye, and aimed the beam, over and over. It was like getting shots of piercingly bright light. At last it was over and I went home to wait for the outcome.

My son Harlan, who was a counselor at a summer camp in Wisconsin, got in his car at 5 AM that morning to drive home to be with me after the treatment. This meant a lot to me as had been a great comfort during previous, non-optical, surgeries.

Each day I checked my Amsler grid and tried to determine if my vision had changed. Pretty soon I could tell that the area of distorted vision was increasing.

Dr. Terry then recommended a treatment that used a different procedure. A new type laser treatment, called Visudyne photodynamic therapy (VDT) laser would be administered. First, I was injected with a photodynamic dye that went into my veins and would show up in the bleeding blood vessels in my eye. The laser would only affect the area where the dye was leaking through the retina, two main blood vessels.

After the treatment, I could not be exposed to any light at all for three days. I would have to leave the clinic wearing a hat, dark glasses, gloves, and long pants and long sleeves. I had to stay inside for three days, which was hard during hot summer weather. To enjoy some fresh air and exercise, Rebecca and I would take walks after the sun went down. She tried to keep my spirits up by calling these our vampire walks, supplying ice cream for us to eat when we returned home.

Although I had a few Visudyne photodynamic treatments, the degeneration in my retina was only temporarily halted each time. Dr. Terry told me he was consulting with his colleagues at other retinal centers around the country. Since there was no standard treatment that would reliably help my condition, he was looking for other possible, experimental treatments.

He tried them all. First, a prescription for steroids to take orally. Along with these he prescribed another pill to prevent heartburn or indigestion caused by the steroid.Next he administered a steroid shot to the side of my eye.

A Living Nightmare

When the bleeding continued, Dr. Terry tried a different technique, injecting a steroid into the center of my eye. Before giving me the shot, he had to inject anesthesia around my eye, which left me with yellow and blue bruises, as if someone had punched me in the face.

I think Michael and Rebecca were both in the room or nearby as I had the shot. As I looked up into bright light, a needle injected steroids into my pupil, which seemed to take forever. I felt that I was watching myself from out of my body, in disbelief and horror. When it was over, I sat trembling in my chair, while Rebecca and Michael came over to hug and comfort me.

After the steroids and shots my eye pressure dramatically increased, so I was prescribed eye drops to take each day, which fortunately helped lower the pressure. That is, until my retina became detached later that year. But that’s another story.

After a week or two or three of stability, the bleeding would resume. On my next visit, Dr. Terry told me about a colleague in Maryland who used a brand new red-yellow laser that only affected the part of the eye that was still bleeding. Dr. Terry called his colleague, Dr. Burt Glaser, in Chevy Chase, Maryland, to see if I could consult with him. While Dr. Terry made the arrangements for this referral and assembled my records, I called the airline from his waiting room and booked tickets for Michael and me to fly to DC the next morning. We found a hotel near the clinic.

A Desperate Trip to DC

The next day we were on our way, getting to the clinic by noon. We spent the rest of the day in the waiting room. I listened to a book on a little cassette recorder to pass the time. Finally, I was called in and examined by Dr. Glaser and one of his associates. After they reviewed all my previous treatments and saw the bruising around my eye, they shared their opinion. Given all the treatments and the bruising, they felt it best to wait and not treat me at that time. We left the clinic late in the day, disappointed that I had not received a miracle treatment to save my remaining vision.

Our airline tickets required us to stay over a Saturday night, so we moved to a hotel in DC and spent the next day walking around the city. I could not read signs or see much of what was around me. It felt strange to be in DC, a city I knew well and loved, but I could not enjoy. At dinner, in one of my favorite restaurants, Michael read the menu out loud , something he would do quite often over the years. But at that time it felt like an announcement of my disability.

We made it through the day and Sunday morning we were ready to head home. As our flight departed from what was then called National Airport, Michael pointed out the Pentagon to me. It was September 9, 2001.

Two days later a plane would crash into the space we had just flown over.

Next post: Adapting to Low Vision