Hi Cheryl, thank you for taking the time to talk with me today and share your story with Saving Sight. Your brother Scot recently passed on the gift of sight as an eye donor, but he also was a living kidney donor to you many years ago.
Can you tell me a little bit about Scot – What was he like and what were some of his favorite activities?
Cheryl: Sure, so Scot was my brother and the words that we say to best describe Scot would be he was funny, and quirky, and he was just a true friend to so many people. I do think that his greatest passion in life was being a dad. He loved being active and exploring with his daughter and together they would do so many things. They loved to walk around Kansas City, and they’d hop aboard the Kansas City Streetcar and go explore City Market and various places. In asking my niece about what she remembered most about her dad she said that she really loved going to the Chiefs games and the Royals games and just having so much fun at those events. They celebrated the Kansas City World Series win and did that up big and that was just such a joyous time for Scot.
To say a little more, he did find his place really when he joined the Greater Kansas City Writing Project. There he really fell into writing – both writing his personal experiences, and also working to get other to write and share their personal experiences through writing. He was an instructional coach for Kansas City, Missouri school district and his great passion was teaching young kids to write and to really help them find their voice through writing.
Tell me about your family’s decision for Scot to be a donor and his legacy of helping others through donation.
So our experience is a little different because Scot was my kidney donor back in 1997. I’d had kidney disease that was diagnosed when I was a senior in high school and when I was 33 years old it was time that I needed a kidney. Both of my brothers were tested, both were a match, but Scot was the one who really stepped up to be my donor. For him, it was something that he could do to really help me but also just to show his character and just to do something so positive. Kidney donation was such an important thing in our family and donation in general is just so near and dear to our hearts that we wanted Scot’s legacy to include giving life to others even after he had passed.
Scot really has always helped others by giving of himself. If we needed something, we’d call him and he would be right over to help. And so it’s not surprising that he was signed up to be a donor and just really wants to help others. So this was the best way that he could continue to help even after his passing.
How do you think Scot’s legacy lives on as an eye donor?
I imagine another person being able to see because of Scot. Two people have gone from living in darkness to a window being opened where they can see so many things. We don’t know about our recipients, but I’m hoping if there’s a grandchild to be seen someone is seeing their grandchild for the first time. If there’s a beautiful sunset to be seen, I’m hoping that these people are able to enjoy a beautiful sunset. I think the things we see can shape our lives so much and I think through Scot’s donation maybe a person’s life is being changed, perspectives are being made, and just a better quality of life for someone.
As a donor family, why is donation meaningful to you and how have you found comfort in your support of eye donation and sharing Scot’s story?
It just brings us great joy to know that someone is seeing beauty through Scot’s eyes. Scot often wrote of experiencing freedom and, through the gift of his corneal tissue and the transplant that someone was able to receive, I just imagine someone is really living a more authentic live and truly experiencing freedom. I just think that Scot would most definitely want to do this for another person; if he came back and found out we had not donated anything that we could of his then I think he would be very upset with us.
His daughter is a freshman in high school now and I asked her how she felt about us donating his tissue and corneas and such and she says, “oh I’m just so glad that we did that.” Someone went and spoke to them at their high school and that she had signed something for herself to be an organ donor too. She’s just totally on board with it and I think it just really gives her great comfort that his legacy includes giving to others.
I know you were interested in writing a letter to Scot’s recipient and you learned his recipients were international. What caused you to want to reach out?
You know we just really wanted our recipient to know about Scot, but I just kind of want to really know how life has changed for our recipients. I think that possibly we could see a little bit of Scot through those eyes or just the experiences someone has seen. Hopefully the recipients are living much fuller lives now. Mostly I just want to hear from another how Scot has changed another’s life.
What would you say to others who are considering donation?
I’m such an advocate for organ donation. Scot had donated to me and then my friend ended up being a sister-like match for me, which it just seems like such a miracle that she was such a good match for me. Since my transplant, another friend of mine was an altruistic donor to a man that she did not know. And then she inspired another person to be an altruistic donor. Organ donation just really is so soul-stirring. Of course, being a kidney recipient myself I do encourage others to consider donation. There’s nothing greater than knowing one being is willing to lessen the burden of another through organ donation. When I hear organ donation stories, I know there is such good in the world. It gives our family great pride and comfort to know that our tragedy of losing Scot lessens the pain of another’s suffering. I mean I really feel like the circle of life provides through organ donation. It just seems like it’s the ultimate act of humanity. To me it reinforces my belief that we truly are placed on this earth to help out each other and to lift each other up and to give another what they need in a pretty great way.
I know that April is your 2nd transplant anniversary month, so that’s pretty special with it being Donation Life Month with Donate Life America as well.
Yes, last year my one year transplant my friend – my donor – and I got together with some people who were very supportive of organ donation and just of the road that we travelled. And I tell you that day I just was filled with gratitude and I felt like everything went right that day because I was so filled with gratitude. I felt like even the traffic parted for me, like I was walking on air. If everyone could just have a day where they think ok I am going to just completely be grateful today I think they would see what a difference a day like that can make because that’s a day that I remember so vividly. It will be different this year because I won’t be able to get together with my donor, but I plan on paying it forward by doing some donations – I don’t know where I’m going to donate to yet – but to do some donations to either St. Luke’s Kidney Transplant Clinic just to give back a little bit this year and find where there’s a need and to give myself.
That’s definitely a wonderful sentiment, and just experiencing a day like that of gratitude I think is something we all could appreciate for sure.
I had a pretty good sense of what it was like to be truly grateful that day because it had been a hard journey to get my second transplant. Of course, in looking back on it when everything at the end went so well you think, ‘oh that wasn’t so bad.’ but to be in the midst of it and to be in that place of uncertainty, it really was hard.
That’s wonderful Cheryl, Is there anything else you would like to mention that we haven’t discussed?
You know, like I said, donation can just truly stir your soul. I definitely would encourage people to find out more about organ donation. Now that I’ve learned about Saving Sight, just to learn more about eye donation. You know, I hadn’t really thought about eye donation up to the point before we lost Scot, but what a great way to help another person. Totally life changing, so my message is please donate.
Well thank you so much for taking the time to share your story with us today and for allowing us to honor your brother’s legacy as a donor hero.
Thank you for talking with me.
If you would like to learn more about Saving Sight, or would like to register as a donor, please visit saving-sight.org.