The Gift of Eyesight

Shortly after meeting John, I needed to go to the DMV to get a new driver’s license. He came along, and waited for me as I filled out the paperwork, completed the eye test, and had my photo taken. Like always, I grabbed the little round orange sticker and put it on the back of my driver’s license.

“You’re an organ donor?” he asked me.

“Yeah, always have been.” I replied,  trying to sound like someone who had the option for longer than 3 years.

“What made you decide to do that?” he asked.

“I don’t know. I just always figured that if I died and my organs could help someone else, I’d like that to happen.” I told him. “Kind of like I wasn’t really completely gone.”

“I don’t think I could do that.” he said. “It seems kind of creepy to me.”

And so started our journey together. Organ donating was only one of many things we didn’t agree completely about. Even so, we had a great marriage. I respected his perspectives and he respected mine. We held opposing views on some pretty major issues, but instead of it being a sore point between us, it was something we loved about one another. Over the years he taught me to appreciate sports, taught me to be more spontaneous, and helped me to slow down when all of my engines started firing up about something. In turn, I taught him how to travel, to appreciate British drama, and apparently to think more about donating organs.

It wasn’t like we sat down on weekends with a cocktail and started talking about how our internal organs could be harvested after we died to help other people. That WOULD have been creepy. Instead, over time, and through different situations, he must have spent moments considering the idea of organ donation, without sharing that with me. The question didn’t come up again until one day when we both completed our living wills during a hospital visit several years ago after he was diagnosed with testicular cancer.

The question came up on the living will, ” I consent to donate my organs and tissues at the time of my death for the purpose of transplant, medical study or education,” the staff person read.

John looked at me and was quiet for awhile. “No.I can’t. I know that upsets you, Kristyn, but I just can’t. No one would want my organs anyway.” he replied.

“It’s your decision, not mine,” I told him. “It makes no difference to me what you decide. I’m not disappointed in you. I WOULD be disappointed if you did something you didn’t believe in.”

The staff worker then told him, “If you ever change your mind, there are a lot of organs that you would be eligible to donate. Your heart would probably not qualify because of the heart attack you had, but you lungs, other internal organs, and your eyes very likely would,” she told him.

He went through his chemo treatments, was declared cured of the cancer, and our lives went on. Until….

Eight years later he was diagnosed with a different cancer and we again sat in a hospital room together, hoping for similar results from the chemo as the last time he was treated. The social worker brought out the old living will and said that it should be updated. She read over certain parts of it and most things still applied. Then she came to the organ donation question…..

“I consent to donate my organs and tissues at the time of my death for the purpose of transplant, medical study or education. You said, no. Is that still true?” she asked.

There was a long silence.

“Well, do I have any organs worth donating? I mean I’m full of chemo drugs, there can’t be anything another person would want if I died,” John asked.

“That’s not true,” she told him. “There are many organs, if gathered within the right time frame and depending upon the circumstances of death, that could still be donated.”

John again sat quietly for quite awhile.

“Yeah. I think I’d like that.” he said cautiously and then quickly looked over at me. “I bet you never thought you’d hear me say that,?” he asked with his trademark little smirk that snuck up into his eyes making them sparkle with a devious nature.

“Absolutely not!” I said. “I’m shocked. And pleased. Are you sure that is what you would want?”

“Yeah. If I couldn’t be here and I could still help someone else. That would make me feel good.” he said. And with that, the box was checked.

Five months later, as Anna and I made the two hour trip home a few hours after his death, my phone rang. I looked at the caller ID and had no idea who it might be, but thought that it was probably important, so I answered. It was a worker from the Wisconsin Lions Eye Bank.

She told me that she had received a phone call from the hospital to inform her that John had died and that he had wished to be an organ donor. I had forgotten, and donating his organs certainly wasn’t  the first thing on my mind after that horrendous day. But hearing those words made my heart swell.

“Is he a candidate?” I asked. I knew that he had been pumped full of so many chemicals in the final weeks and the final minutes of his life. I then worried that donation wouldn’t be a possibility. She said that I would have to answer some questions first and then it could be determined if he could donate his eyes. His other organs, she told me, would not be eligible. Forty five minutes later, seriously, forty five minutes of some very difficult, personal questions and she said that we were done. His eyes would be taken, she told me, and we would receive a letter in about a month telling us the sex of the person or persons who received his gift and the cities they lived in. His gift might benefit two people. My heart warmed and I felt the first sense of joy, only hours after he died.

A few days later, we received a package in the mail from the Lion’s Eye Bank. Inside of it was this.

We put the small heart near his Hand Turned Wooden Urn during the funeral, and afterwards tucked it safely away at home.

About six weeks later I received the letter that I had been waiting for. I sat down and opened it slowly with my daughters sitting around me. One of the recipients of John’s cornea was a woman from Rockford, Illinois, and the second recipient was a man from Los Angeles, California. I immediately wanted to see a picture of one of them, or know their name, but I knew that finding them would be nearly impossible. I have thought of them both often, and remember how John’s eyes would sparkle.

This donation also caused me to remember the day that John had his cataracts removed. He had been born with cataracts and never had perfectly clear vision. The day they were removed, when he was in his 30s, his amazement with the world around him was childlike. I remember his excited voice, and the happiness in his face, and how he didn’t want to close his eyes at night to sleep for fear that he would miss out on something. He loved color and the clarity of the things around him. It was like he had been given a wonderful gift by that surgery.

Now, I hoped, there were two other people who were equally as mesmerized by their new, clear sight because of John. That was enough.

When John was diagnosed with his second cancer I did exactly what I had done after his first diagnosis of testicular cancer. I read. And read. And read. And researched. And searched. And reached out. And made connections with others who could offer their stories and their advice. My eyes were always straining.

From March until his death in October, my eyes were on my smartphone screen, my tablet, or my chromebook. Even before he got sick, I used my phone and my chromebook to research my mother’s Alzheimer’s, to learn more about services for her, and to reach out and connect with other caregivers.

At an eye appointment prior to John’s cancer, the doctor told me that I only needed cheaters for close up work and for the computer if I felt that they would help me. I bought a few pair and used them for all of my up-close handiwork like knitting and sewing, and only sometimes used them when I read from a screen. As John went from one hospitalization to the next,  I noticed that things were suddenly blurry. I couldn’t

read things as easily as before, both up close and far away. Suddenly, there were pairs of cheaters in my purse, on the kitchen table, at work, on my nightstand, in my knitting project bag, next to the sewing machine, and on the living room coffee table. Yep, there was no denying that my eyesight had gotten worse.

If I was wearing my glasses and someone came to talk to me, I would have to either look directly at them through my glasses, causing me to feel nauseous, or perch them on the end of my nose to look over the top, or take them off, on and off, on and off, throughout the conversation. It was a nuisance, but I dealt with it. Then I went in for my annual physical, and the doctor asked me, “When was the last time your eyes were checked?”

“A few years ago,” I told him, “and the eye doctor said that I just needed cheaters.”

“You need to have them checked again,” he told me and I was instantly nervous.

I made the appointment, and had my eyes tested. The eye doctor explained that I would need to go from wearing cheaters once in awhile to wearing progressive lenses where I would have three glasses in one. He told me that it would be challenging, but that my eyesight had gotten worse since I was last there. He affirmed that it was the screen time that had probably caused it.

So, I’m left with fuzzy vision, the result of researching angiosarcoma, reaching out to other patients, other caregivers, and friends for support and information. I like to think that I gave the gift of my eyesight to get what was best for my husband, and my husband gave the gift of eyesight to help others. I’m proud of us both and I would do it all over again.

If you, or someone you care about is dealing with grief, here are some tips for coping with grief from people who are dealing with it themselves!