Editor’s note: Todd Shayler first told this story on stage at the Des Moines Storytellers Project’s “Overcoming.” The Des Moines Storytellers Project is a series of storytelling events in which community members work with Register journalists to tell true, first-person stories live on stage. An edited version appears below.
I have always been the type of person who likes to have clothes in my closet with tags still on them. Couple that with being a bargain shopper, and you can imagine what my closets, yes closets, look like. Needless to say, I like to be prepared for any special occasion that could come my way that requires a new outfit to make me look and feel my best.
As I was preparing my outfit for this evening, though, you might be surprised to hear that I didn’t go to my closet looking for any of those tagged items. I wasn’t looking for a particular brand, color or fit. This outfit, including the shoes and right down to my socks and underwear was purchased for a special occasion six years ago.
I remember my mom and I were Black Friday shopping as we often used to do. And I found this suit and asked her, “Well, what do you think?” Being a mother who constantly complains about the number of clothes I have, probably because of her memories of me bringing garbage bags full of them home from college for her to lovingly launder, I could see the concern on her face when she ask, “What’s that for? Do you really need another suit?”
And I responded with a simple, “I do, actually. It’s for my funeral.”
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And that’s exactly why this is appropriate attire for my story tonight. This story starts in my childhood, where when I was 14, I was diagnosed with diabetes. Now, this was in the early ‘90s when diabetes wasn’t as widely known or talked about.
Fortunately, or unfortunately depending on your lens, however, my older brother was diagnosed as a diabetic six years earlier. So my family was all too familiar with the disease and how to manage it with the constant finger sticks to test glucose levels, the controlled diet, the exercise routines, and most awfully the daily insulin shots. This disease plagued many generations in my family, including my dad as an adult, and later my mom too.
My blood sugar levels were always hard to control and I fought new technologies such as insulin pump therapy where in the early days a tubing line would show that I was battling some medical condition. Without it, I could hide my shame of not fitting in at school and later at college by not feeling like an outsider or being seen as “other” or not normal. I was already facing that battle with my sexuality and I definitely was not confident enough to give my tormentors another reason to pick at me.
But in my 30s my priorities shifted and my health became more of a priority. I asked my doctor to be put on an insulin pump (the tubeless kind — I still have my vanity!). The hospitalizations and damage from the uncontrolled diabetes was taking a toll on my body and was no longer sustainable. Luckily, the insulin pump helped me to gain tighter control on my blood sugar levels. But diabetes can be a deadly disease and it had already done so much damage.
At 36, I was alone at a routine appointment with my nephrologist when he delivered the news that my kidney function was trending downward and quickly. If memory serves, at that point, my kidneys were functioning around 50%. I had chronic kidney disease. The doctor explained how kidney function could not be restored, but the progression toward end stage renal disease could potentially be slowed with my tighter blood sugar control. But, also, that if and when my kidney function declined to 15% or less I would need to go on dialysis and an organ transplant list.
I remember tears welling up after that appointment and crying most of the 45-minute drive home alone. My mind was going everywhere:
- What have you done with your life?
- Why didn’t you take your diabetes more seriously when you were diagnosed?
- Who’s going to care if you die? You haven’t been able to sustain a relationship with anyone. There’s no one who will miss you anyway! You don’t even have kids. Where’s your legacy?
At some point I told my family my devastating news and I began secretly weighing my options, all the while, my mom taking me to presentations about kidney dialysis, treatment options, outcome statistics and the like. I remember that the self-pity ceased inside of me and turned to anger. Why did this happen to me? I’m a good person!
I was so upset with my diagnosis that I was even taking it out on the people who loved me. In one presentation at the University of Michigan Medical Center about hemodialysis I remember being handed a filter used in the process of cleaning blood by my mom. “I SAID I DON’T WANT TO SEE IT! I DON’T WANT TO BE DOING ANY OF THIS.”
So I had a decision to make, and I had made up my mind. I decided that I would gather everyone at my condo for a Christmas meal. I started cooking at 5 a.m. for our 2 p.m. gathering. I hadn’t realized it at that time, but my body had become so worn out and tired from the toxins building up inside of it that I would have to prepare one dish and go sit and rest for 15 minutes before I could move on to the next dish. My health was definitely on a noticeable decline.
After that meal was cleaned up and we had exchanged gifts, I announced, “Now the real reason I asked you all to come here today was because I don’t know what the future holds for me. I’m really much sicker than even I realized and I wanted to be able to give a small gift of a meal where no one had to worry about who was cooking or who was bringing what while I still can. And I’ve decided that since I don’t have kids and only have the dog who relies on me, I’m going to leave my fate in God’s hands. I will not be going on dialysis or seeking treatment of any kind. I will agree to be put on a donation list but will not accept a living donor’s kidney — it is too much to ask of anyone. The doctor has told me that my kidney function is at 12%. I am in end stage renal disease and this will continue to trend downward.”
“No!” my mom wailed and her emotion filled my house and my soul. “Todd, you’ll never make it!” And that stuck with me. I can still see her tears and feel her emotion to this day.
It was at the end of January when my mom took me back to the U of M to get a catheter port inserted into my abdomen for peritoneal dialysis. After her outburst of emotion, I agreed to try dialysis for one year only. I didn’t want to live the rest of my life hooked up to a machine nightly. If transplant didn’t happen within that year, I was done.
After my catheter port healed, I began dialysis on Feb. 14, 2018. Happy Singles Awareness Day to me. “And you’re definitely going to be single now with this tube obtruding from your stomach, you freak!” I thought to myself.
It was in May of 2019 when I received the call for a transplant offer. I saw the Gift of Life Michigan phone number on my caller ID and immediately my heart sank. The voice on the other end of the phone said, “Mr. Shayler, we have an offer for you. It’s a good match and I just want you to be ready to get to the hospital if you’re willing to accept the offer.”
“Yes, I’ll accept!” After all, it was already beyond my one year commitment to my mother and I was about ready to throw in the towel on all of it.
Later that evening I was called and told to proceed to the hospital where they would hook me up for my final dialysis session and do final testing to get me ready for transplant the following morning. I called my parents to make arrangements for my dog and meet me at the hospital the following morning.
In the morning, the doctors came in and told me my bloodwork from the previous evening was good and that they were going to harvest the organs from the donor. “Now, don’t be alarmed,” they said, “if we don’t come back right at the scheduled time for your surgery. This is understandably a difficult process for the donor’s family to say goodbye to their loved one, and we allow them the grace to do that in their time. We’ll be back to get this done for you as soon as we’re able.”
I thought, “Oh, my God! This is truly happening!”
My parents were in the cafeteria when the doctors came back into my room. The team of at least six doctors stood at the foot of my bed and said, “Mr. Shayler, as you know, we went to harvest the organs and …” “Oh my God, who dropped the cooler?” I said to lighten the mood. But no one laughed. They continued, “… and unfortunately there was a cholesterol issue with the donor that we were unaware of prior to removing the organs. I’m sorry, but the organs aren’t viable and we’re sending you home today. Do you have any questions?”
“Questions? Yeah, what the HELL?!” I heard the voices in my head screaming. But instead, I simply said, “No. No questions. Thank you for trying.”
I called my parents who were still in the cafeteria and shouted, “If you’re finished dining now, can you bring me my keys and wallet so I can get the hell out of here?” “Wait … What?” my mom responded on the other end of the phone. “The organs were s— and they’re sending me home.”
You see, when you’re going through this process, you’re never told that’s even a possibility. You’re riding such a roller coaster of emotion that you don’t even consider that to be a possibility. I’m not proud of this, but in my emotional state, I continued yelling at my mom and reminding her I didn’t want to be going through any of this to begin with. And, my dad was yelling at me for yelling at her … #drama.
It was about a month later when I got my second offer for transplant; this time as a backup offer to another multi-organ recipient. “If they reject the offer for any reason, you will have the opportunity to get them. Stay by the phone and we’ll let you know.”
I should probably tell you at this point that my doctors and I decided that I would get a dual kidney and pancreas transplant because it didn’t make sense to get a new kidney and still have the diabetes that would continue to wreak havoc on a new kidney.
All through that day and all through that night I waited for a phone call that never came. In the morning, I called the Gift of Life office. Already knowing the answer to my question, I still asked, “What happened to the other multi-organ recipient? Did they take the organs?” Then I went on, “Do you know the emotional toll your inability to communicate that fact with me last night took on me? I didn’t know whether to eat or drink, whether to take my pills, whether to connect to dialysis, whether to fall asleep for fear of missing your phone call.”
On Aug. 8, 2019, I received a call with a third offer for organs. Being beaten down by two previous attempts, I got “real” with the nurse on the other end of the phone. “I don’t mean to sound ungrateful, but how likely is this offer to come to fruition? My family and I have been on an emotional roller coaster twice already and I can’t have them or myself have another let down.” “This is a good offer, Mr. Shayler,” the nurse reassured. “But because the donor is a young child, we are doing some final testing to see if the size of the pancreas will be large enough for your body size.”
My heart sank! “A small child?” I’m pretty sure this wasn’t information I was supposed to know. But grateful I finally had someone who was being real with me, I said, “Ok. Thank you! So what happens from here?” “Give us a few more hours and we’ll call you to come into the hospital.”
Was this finally happening?
After my dad came to get the dog, I headed to the hospital about 10 p.m. My parents would meet me at the hospital the following morning where my surgery was scheduled for 11 a.m. The team came in to let us know they were leaving to harvest the organs. I was rolled into pre-op where they put in a central line and then we waited. The anesthesia team came and talked with me.
Then the doctor came in and said, “It’s taking the family a little longer than anticipated to say goodbye to their loved one, so the team is still out. When they get back, I’ll further examine the organs and make sure there are no issues. You’ll be getting the final preparations and be wheeled back into the O.R. as I’m doing these final checks. But just so you know, I have canceled surgeries even after I’ve put people under before if any issues arise. We want to make sure that we’re giving you good, successful organs. Hang tight. We’ll get started soon.”
Noon came. Then 1 p.m. At approximately 1:20 p.m. they finally came to take me back to the operating room. Becoming drowsy from the anesthetics, as I was slid over to the cold stainless steel operating table, Dr. Woodside held up an object and said, “Hey Todd, do you want to see your pancreas?”
I just celebrated my five-year anniversary of rebirth on Aug. 9 of this year. Over the years I have tried to remember and honor the life of my donor by visiting the cemetery, finding a grave either an unmarked grave of a child, a grave adorned with children’s toys, or even one year finding the grave of a 39-year-old man (the same age I was at the time of my transplant). I’ll reflect on this extreme gift I have been given, listen to one of my favorite hymns and say a prayer when I visit these graves.
I know I have been given an incredible gift by a person and a family who I will never know. If I’ve learned anything throughout this entire journey, it’s that the greatest gift we can give each other is kindness. I will continue to honor this family by sharing my story of the importance of organ donation and the incredible difference their kindness has made in my life and my legacy here.
We all have struggles and we are all going through something, whether we share it with others or not. Understanding that is key to seeing beyond party lines, beyond racial lines and beyond lines of sexuality. Not knowing my donor allows me to honor and respect all genders, all ethnicities and all people. Because all people are inside of me and sustaining my life here today.
Being kind doesn’t cost us anything, but it can make a world of difference in someone’s life. And I am a living example of that!
ABOUT THE STORYTELLER: Todd M. Shayler is a Michigan transplant who moved to Iowa in June 2023 for work. He currently serves as the director of conferences, events, & retail operations for Simpson College in Indianola and lives in West Des Moines. Todd is a board member and active singer in the Des Moines Gay Men’s Chorus and holds a master’s degree in communication studies from Bowling Green State University (OH). Todd believes that everyone is unique, everyone has a story to tell, and everyone deserves to be heard and celebrated because of their stories, which create our inherent uniqueness as human beings.
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