A Life Everlasting (11 page)

During a visit to see Ross's family in March 2013, I decided to go see the psychic Kizzy for myself. I had been warned that she was so popular people lined up to see her and that the doors opened at 8
A.M
., so I made sure to arrive by 7
A.M
. so I would be first in line. Her “office” was on the top floor of a dilapidated shopping center called the Savoy Centre, on Argyle Street in Glasgow.

At 7
A.M
. the metal grate was still down on the shop door, so I stood outside reading
The Immortal Life of Henrietta Lacks
, by Rebecca Skloot. I was enthralled by the story of this woman whose cancerous cells had led to so many remarkable advancements in medical science, albeit without her or her family's consent or knowledge.

Every few minutes, more people—mostly young and middle-aged women—collected in the line behind me.

“Here to see Kizzy?” we asked one another.

By 8
A.M
. there were about twenty people in line behind me, and Kizzy's “handler” appeared. He counted from one to fifteen, and told the people from sixteen on to come back another day because she would not have time to see them before 4
P.M
., when she saw her last customer.

He told the people from number ten to fifteen that she might not be able to see them, either, because “she can take twenty minutes, or she can take an hour. It's whatever she's feeling.”They all agreed to wait.

“We drove down from Aberdeen to see her,” I heard someone say. Aberdeen is a three-hour drive from Glasgow on a good day.

Four people showed the handler their “jump the line” cards, which they were given because they had previously waited an entire day and had not been able to see Kizzy before she closed. These four were let in ahead of me.

When the mall opened, the metal grate rolled up and we were led to her office. The mall was dark, seedy, outdated. One shop sold tacky nightclub wear along with light bulbs, First Communion dresses, and sympathy cards. Another seemed to provide an unlocking service for stolen cell phones. I was hungry for coffee and a bagel or toast, but before I could get something, the handler told me it was my turn.

Kizzy didn't look like the stereotypical psychic, with the earrings and crystal ball. She had graying black hair and was wearing the sensible clothing of a normal sixty-something-year-old woman. She looked like my mom, and when she spoke she had a slight Eastern European accent.

As soon as I sat down and introduced myself, Kizzy touched my wrist and said, “I just got a warm feeling shooting up my arm. I am feeling a presence.”

She went on to tell me that the presence was Thomas.

“I see you at your job; you wear a name badge.”

I did, but so did lots of people.

“Your grandfather was in the war.”

Wasn't everybody's grandfather in one war or another?

Then she said, “I see you at a book signing.”

A lot of people had told me to write a book. This was starting to freak me out.

The book thing gave me a weird sensation; it was too much. I felt dizzy. Even though it was not yet 10
A.M
., it made me want to get a stiff drink—or go on a trip, far away from my regular routine.

I was also afraid. Did I believe her? Am I the kind of person who believes psychics now? I was scared to believe her. But if I didn't believe her, why had I just waited three hours in line and paid her? What was I even doing here?

I didn't believe everything she said, but I have spent forty pounds sterling in worse ways.

When I returned home, I was different. It was time to do something.

I
n late July 2012, I was scheduled to take a business trip to Boston, and I invited my mom to join me with the intention of squeezing in a couple of fun dinners and maybe some sightseeing in between my work obligations.

In the week leading up to the trip, I did some research about Schepens Eye Research Institute, which I discovered was less than two miles from the John B. Hynes Veterans Memorial Convention Center, where I'd be working during the day.

The institute was founded in 1950 as the Retina Foundation by Charles L. Schepens, who would become known as the father of modern retinal surgery. Schepens, a Belgian national who fled his country when it was overrun by the Germans in 1940, spent much of the war working with the French and Belgian resistance, and was arrested by the Gestapo more than once. He eventually found his way to London, where he began working as a retinal surgeon. After the war, he emigrated to the United States and took a position at the ophthalmology lab at
Harvard Medical School. Just two years later, he founded the world's first medical practice for treating diseases and conditions of the retina, at Massachusetts Eye and Ear Infirmary. Over the course of his long and accomplished career, Dr. Schepens developed numerous ophthalmic instruments and pioneered many surgical procedures, all of which, when combined, are credited with more than doubling the success rate of retinal reattachment surgery from 40 percent to 90 percent.

Today's Schepens Eye Research Institute—it joined forces with Massachusetts Eye and Ear in 2011 and is an affiliate of Harvard Medical School—is one of the leading eye-research institutions in the country. Its mission is to find new ways to treat and cure eye disorders. Since its inception, its work has expanded to include such cutting-edge innovations as gene therapy, stem-cell research, nerve regeneration, and tissue engineering—all in hopes of finding cures and treatments for the leading causes of blindness and vision impairment.

I combed the Schepens website to see if I could figure out which scientist or study might have received Thomas's donation. I hoped that I could make a connection with someone who could give me a tour while I was in town. I found email addresses for a couple of scientists there, and sent them each a message explaining who I was and asking to arrange a visit.

A volunteer patient liaison wrote back to me to say that because of privacy restrictions, he would not be able to tell me how, or even
if
, my son's donation was used. He made no mention of my request for a tour. So I set out for Boston with no visit to Schepens planned. I hoped I might hear from one of the people I'd emailed before I arrived, but no such luck.

A few days into my trip, I decided to give it one last shot, and a Google search produced the phone number of the Schepens front desk. For a second I was shocked to realize the place
had a front desk. If I was willing to make one of the weirdest calls of my life, maybe something would happen.

I paced the skywalk of the Hynes Convention Center as I imagined how the call might go. I would explain the whole story and they would tell me it violated some confidentiality thing. Or that it wasn't allowed. Or it wasn't within policy. But I thought,
I have a personal connection to this place. I gave them something they needed. I'm sure they have wondered, at some point, where the donations came from. I'm just going to call. I will feel awkward. Maybe they'll feel awkward, too. If I could just get past the part of talking about the death of a child to a complete stranger over the phone, something powerful might happen. I have to at least try
.

My heart raced as I clicked “Dial,” and I gripped the phone hard.

Here goes. I am doing this.

“Schepens Eye Research Institute. How can I help you?” a woman's voice said.

Adrenaline shot through me. I tried to play it cool: Shucks, I'm just a regular old girl next door looking for her deceased child's cornea researcher. Just like everybody else.

“Hi, my name is Sarah Gray. I have a kind of unusual request, but maybe you can point me in the right direction.” I could feel my face get hot. “I had an infant son who died of a birth defect a few years ago. And we donated his eyes to Schepens.” My heart was thumping hard now. “I live in Washington, DC, but I am here in Boston on business for the next few days, and I was wondering if I could get, like, a ten-minute tour while I am in town—just so I can learn more about what Schepens does.”

There was a long pause, and then the woman changed everything. She said, “I've never had a request like this, but I will find someone to help you. Please stay on the line, okay? It might take a while, but I'll find someone.”

I was expecting to hang up in tears, but my hopes soared. Was this actually going to work?

After a while, I was put through to Carolyn Bellefeuille in the development department.

“I'm so sorry to hear about your son. Twins, was it?” She had a New England accent.

“Yes. His brother is fine, a very healthy little boy.”

“My daughter just had twins. They were born premature—thirty-three and a half weeks—but now they're fine. How old is your boy?”

“He's two.”

“So this is a big facility, and there is a lot to see. Do you know which part you are interested in seeing? Retina? Cornea?”

The letter I'd received from WRTC had mentioned Thomas's eyes, but nothing more specific. “Wherever you think my son's eyes would have gone,” I said. “Do you have a place for pediatric eyes?”

“No, but we have areas for cornea research and retina research. I'm sorry to ask this, but it might help if you can tell me how he died.”

“Technically, his heart stopped, but he had anencephaly. Part of his brain was missing.”

“In that case, he probably donated corneas, not retinas. I can show you the area where they do the cornea research.”

It was refreshing to talk to a stranger about Thomas in a new context rather than through the lens of grief. Carolyn and I were talking about Thomas's eye donation, a topic about as uncomfortable and unusual as you can get, but it didn't feel that way. There was no pity in her voice. She agreed to meet my mom and me at noon the next day.

Something inside me started to shift.

When we pulled up in front of the unassuming red brick building in West Boston the next day, I saw the Schepens logo by the door, and my heart jumped. I started making a mental list of the photos I wanted to take to share with Ross and Callum.

I noticed a FedEx delivery truck near the loading dock, and I wondered if it was delivering eye tissue to the scientists. I wondered if Thomas's donation had come in through this loading dock, too.

Once inside, I was in awe. I felt like I was in Santa's workshop. I read the names of the financial benefactors on the wall and felt like one of them, even though my name wasn't listed. This place was now part of my permanent family history. As I looked around the lobby, Thomas stopped being just a memory. He had an address in the real world. I could take a taxi to an actual place
where he was
. There were secretaries working there and microwaving Lean Cuisines for lunch. This place had a website and brochures; in fact, I took one about eye care and stuffed it into my purse, just to prove that this was not a dream.

“So nice to meet you,” Carolyn said when she came to greet us, reaching for my hand to shake it. She was an older woman with dark black hair and kind green eyes. “We have never had a donor's family here before.”

And so began the tour. Carolyn walked us through several labs, where we saw people in their twenties and thirties hunched over microscopes. She explained that most of the research was done with animals on the lower level, but we were not allowed to go down there because of the sterile environment. We saw refrigerators and freezers and microwaves with “No Food” signs taped on them, and another handwritten sign that read something like “Please do not mix mammalian cells.”

Eventually we reached the desk of a man eating a salad from Whole Foods. It was Dr. James Zieske, a senior scientist at
Schepens and an associate professor of ophthalmology at Harvard Medical School. He had grayish brown hair, round cheeks, large wire-frame glasses, and a friendly smile. I would learn later that Dr. Zieske had been studying the mechanisms involved in repairing wounds to the cornea for thirty years and had published more than seventy peer-reviewed articles on the subject. Incredibly, he was also the man who ordered the human eyes for research. In other words, he was one of the people I had been wondering about for the last two years.

When Carolyn explained who we were, Dr. Zieske looked shaken. He immediately stood up from his desk and shook our hands.

“Thank you so much for your donation. We can't do our work without such gifts.” He paused. “Do you have any questions for me?”

I struggled to catch my breath to speak. I was afraid that the questions I wanted to ask would seem morbid or would break some rule of confidentiality. But I knew I might never get this chance again. The atmosphere was so charged, it was glimmering.

I said, “How do you order eyes? Is there a catalog?”

“Yes, actually, there is. We order them online from an eye bank.”

“How do the eyes arrive? Do they come in the mail? Or FedEx?”

“They are shipped FedEx, and they arrive over in that mail room.” He pointed to a doorway in the back of the lab.

“How many eyes do you order in a year?”

“My department orders about ten pairs per year. But the facility, as a whole, orders about a hundred pairs a year. We would order more if we could, but they are hard to get. That's why most of the research is done on animal eyes first. When the backup research is done, then we move on to study human eyes.”

I pulled up a photo on my phone of the twins, and I zoomed in on Thomas's eyes. “Here is a picture of my son. Do you remember getting these eyes?” They seemed like a unique pair of eyes to me. One of his eyes had been swollen, round, and pink and about the size of a large gumball, and the other was the size of a jellybean.

Dr. Zieske smiled kindly at me. “By the time we get them, the eyes have been processed. We only get the corneas, and they all look the same. Kind of like contact lenses. But most of the eyes we get are from older people. Infant eyes are like gold to us.”

I choked down a sob.

“Why do you say that?”

“Young tissue has a much greater potential to regenerate. If you don't mind me asking, when did your son die?”

“About two years ago.”

“The tissue can regenerate for up to two years, so we are probably still using his eye cells right now.”

I was stunned. The donation was so much more valuable than I had even dared imagine.

Dr. Zieske went on to explain that there are three types of cells in the cornea: the epithelium, the stromal fibroblasts, and the endothelium. Both the epithelium and fibroblasts proliferate both in the cornea and in culture, but the endothelial cells do not proliferate in the cornea after birth. So the cells you are born with are the only ones you get. In a culture, the endothelial cells can be coaxed into proliferating, although it is a tricky process. The scientist who actually received Thomas's cornea was one of the leaders, before she retired, in developing methods to get endothelial cells to proliferate. Her process is now widely used as a source of cells that can be transplanted into eyes in which the endothelial cell number has dropped to an unhealthy level.

I savored every second in Dr. Zieske's presence. It felt so important and special to be there, like I was meeting Bruce Springsteen or an astronaut or a
Titanic
survivor. I asked him questions just to have a reason to be in his presence longer. I felt a love for him the way I love my brothers. I pictured us being friends. I pictured Ross and me being invited to his house for a dinner party.

This was a landmark day in my life, and I wanted to record it. So I asked my mom to take my picture with Dr. Zieske and Carolyn.

Eventually we had to say good-bye to Dr. Zieske—I wanted to let him finish his lunch—and Carolyn led us to the elevator, where we passed a young man with brown hair and a Russian accent talking to a colleague in the hallway. Carolyn whispered, “That's probably one of the smartest people in the world. He is doing groundbreaking work with retinas.”

I believed her. This seemed like a place where The Smartest Person in the World might actually hang out.

Next stop was the office of Dr. Andrius Kazlauskas, a macular regeneration specialist and Harvard Medical School professor. He had short, white hair and a trimmed beard, and there was a bicycle in his office. Dr. Kaslauskas was kind, though he seemed a little unsure of what to say. He told us that he was researching retinopathy in premature babies (a condition that can lead to permanent blindness), and he asked what else I might like to know.

“I've met a lot of people who got the chance to meet their donor's recipient and shake their hands,” I said, starting to melt with tears. “But since I donated my son's organs to research rather than for transplant, I don't know what happened to the donations. So that's why I'm here. I just want to learn what happens in a place like this. And I am really impressed and glad we were able to donate here.”

Dr. Kaslauskas put his arm around me as my mom took another picture. My smile was ugly because I was still crying.

Next on the tour, Carolyn showed us a six-hundred-thousand-dollar microscope called a confocal that was probably used to look at my son's eye cells. It was enormous, and had not only its own room but its own staff member, Dr. Donald Pottle, who guarded it. I noticed that there were photos of eyes decorating the walls, and Dr. Pottle laughed and said these were pictures of his own eyes he had taken for fun.