The Very Personal Miracle of 1988
Twenty-nine years ago, a miracle happened.
But first, allow me to back up to the very beginning.
At fourteen months of age, I was diagnosed with Scheie Syndrome. Google it if you must, but I’m warning you - some of the pictures are unsettling. You see, Scheie Syndrome is a less-severe version of something called Hurler’s Disease. Now that one’s real scary – misshapen features, physical and intellectual disabilities, and an average lifespan of ten years.
Scheie Syndrome’s primary symptoms are cloudy corneas and decreasing vision. It’s akin to looking through a very dirty window. Eyeglasses don’t help. That, my parents were told, would be like covering that dirty window with another one. Corneal transplants were in their infancy during the 1960’s, and Dr. Harold Scheie, my ophthalmologist and the person responsible for identifying Scheie Syndrome, warned my parents to avoid transplants at all cost. The new corneas would cloud up, too, he said.
So you live with it. I didn’t know my vision was different from anyone else’s until my first day of school. Our teacher wrote the letters of the alphabet on the blackboard and had us copy them. I couldn’t see the board. That wonderful teacher, Mrs. Hurlock, knew this already. “Move closer so you can see,” I remember her saying. ‘Closer’ was four feet from the board. That became my spot.
I’ll save the details for a future post, but my vision remained steady through my mid-twenties. Having never experienced good vision, I couldn’t fully appreciate what I was missing. I’d always held books two inches from my nose and struggled to recognize friends from further than ten feet. Like many kids, I graduated, went off to college, and got a job. I’d been teaching for five years when I noticed my vision was dimming. Teaching notes had to be larger. Lighting had to be brighter. After avoiding the eye doctor for years, it was time to return.
For the better part of an hour, a staff ophthalmologist at St. Louis University Hospital examined me with scopes and bright lights. After one last check, he jotted a few notes, and turned to me.
“You need a cornea transplant.”
Remembering what my parents were told a quarter-century earlier, my response was quick:
“I want to see your boss.”
I learned two things that day. First, some doctors don’t appreciate being second-guessed. Second, medical technology had come a long way. The head of the SLU Department of Ophthalmology was a kind man named Dr. David Schanzlin. He ooohed and ahhhed when I told him of my childhood visits with Dr. Scheie. “A pioneer,” he said. “His work shaped our field… but times have changed.”
Then, he threw out the line that clinched it.
“You’re going blind.”
With little to lose, I had my name added to the list for a donor cornea. In 1987, the wait could be anywhere from one to six months. Then, the second week of January, I received word that I was nearing the top of the list. “Stay near the phone and be ready to leave for the hospital,” they told me.
The date was January 25, a Monday. I was in class when the office said I had a phone call.
“Mr. Wootten, we have your cornea.”
That was twenty-nine years ago this week. The transplant was so successful that the twelve-month waiting period between transplants was waived. In June, I received my second transplant. Two months later, I was fitted with contact lenses. A month after that, at age twenty-nine, I got my driver’s license. Forty days after that, my first speeding ticket.
That transplant gave out three years ago, one year past the twenty-five year life expectancy of a cornea. I received a new one. It’s doing well. My left cornea will be twenty-nine this summer. It’s also doing fine, and says hello.
I divide my life into two parts. There were the twenty-nine years before my first transplant, and this month marks twenty-nine years since. Both parts are chockful of blessings and challenges. I screwed up plenty of things before and after, and made a few good decisions, too.
I sure do like seeing.
How about you? Are you an organ and tissue donor? I’ve heard the reasons not to sign up: “I want my organs with me when I’m buried,” or “it creeps me out.”
More to the point, I’ve experienced the good that comes from organ and tissue donation.
If you’ve registered as a tissue donor, please let me know, either by email, on my Facebook page, or in the comments section below. If you want to sign up, go here or click on the picture of the eye, sign up, and let me know about it. I’ll pick one donor at random to receive a complimentary signed copy of my upcoming book, Shunned.
And as always, thanks for reading.
1/29/2017 09:36:21 pm
I have been an organ and tissue donor since I got my license at 16 . I never knew the whole story. Glad you shared your story. Very informative and brave.
Thanks Steve. The real heroes are people, like you who are willing to donate. I can only speak for cornea tissue, but the months-long wait I experienced in 1987-88 no longer exists, thanks to willing donors. When it came time for my transplant three years ago, the doctor scheduled the surgery with the understanding that a graft would be available when needed. That's encouraging.
Debbie Shufelt Diehl
1/29/2017 10:12:52 pm
Knowing you from high school I can't tell you how much I enjoy reading your blogs and hearing the stories about your life journey. I just renewed my license early December and for the first time did not renew my organ donor pledge. I love the concept of giving to those in need but a combination of some negative things I read, along with the feeling my older organs weren't as needed and whatever was going thru my mind that day I didn't check the box. Your story compels me make that commitment once again!
Thank you, Debbie. I've also come across some negative press about organ and tissue donation, about how some people have bartered or bought their way to a higher place on the donor list. Sad, but I'm glad you're reconsidering. I learned the full story of the donors of my first transplants. That information isn't as readily available today as it was in the 1980's, however.
Lisa Hurley Anderson
1/29/2017 10:25:40 pm
Mrs. Hurlock was a wonderful teacher! So happy that your transplants were successful! To answer your question ... in December when I renewed my license, I signed up as an organ donor for the first time. My husband and daughter have both been registered as donors for years.
1/30/2017 01:29:19 pm
2/3/2017 12:46:20 pm
I briefly thought about it, but the cost and logistics makes it impractical. I am putting my faith in the doctor at Washington U. I cannot really wait as they tell me the risk continues to rise and it makes it harder to do the procedure and they have no idea when it might become available. I have been lucky that I have been able to see as well as I do all these years. If I had been born in a different time, I would have spent my life blind.
1/30/2017 01:39:42 pm
Paul, when we had Gary's memorial service last year, Marc did the eulogy and he mentioned about Gary giving you a place on the team and how you went on to work for a major league team...I was proud to hear him mention that! So glad you are doing well!!
7/31/2017 02:39:50 pm
Thank you, Paul, for those words. He often mentioned you when we talked Galestown little guys baseball. He had so much fun doing it. Remember those ugly shirts I made??
1/31/2017 12:05:44 pm
You don't know me, we have only met. Robin knows me well. Loved your book, . Recommended it for my book club. Thanks for sharing your eye story. GOD blesses us in many ways and your transplant is certainly a blessing worthy of praise! Looking forward to you next book.
Susan. Newell Stelling
2/2/2017 03:17:49 pm
I never knew the whole story of your vision problems. What a great blessing that you've received, now several times. I've put it on my driver's license to be an organ donor. I think it's a wonderful opportunity to help someone.
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