General
Have you been emotionally vulnerable on your journey? If so, in what ways?
Being vulnerable can be a scary thing. When I published my memoir last year I shared things i had never shared before. Just about everyone in my life never knew about the traumas and tragedies that struck my family when i was a young teenager and how that impacted the rest of my life. Although I threaded my kidney journey in ways throughout the book, the toughest parts of my life were not necessarily kidney failure and dialysis.
To me, end-stage renal failure offered me an opportunity to be vulnerable as I looked back on my life. I made a list of thirty-seven people who had made a positive impact on my life and created a "Reconnection Tour" to find and thank them.
I took my teenage daughter "on tour" with me so she could "see" into my life. In December 2018 we travelled to New Orleans to meet an 85-year-old-woman named Mickey who had been my school guidance counselor when I was fifteen-years-old. Mickey gave a note to my daughter the morning after we met.
It read:
"Dearest Lizzie (and her Dad),
The way you listened to your Dad warmed my heart. You listened to him intently and so respectfully. That was hugely important. You were not judgmental or feeling sorry for him. You were saddened by his plight—a very young boy having to feel rejected by his whole family—and yet he survived. He has you, who loves him in the strongest of ways—a quiet and complete acceptance. He trusted you (and me) to listen, understand and love him while he told us his deepest feelings. He somehow even knew he could trust Fritz who is the kindest, gentlest person I know, who also understands everything. You are so special—as is your Dad—you two are blessed to have each other. That makes up, I suspect, for much of his pain. We love you both. —Mickey
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Wow, that is really powerful @Jay
As the caregiver to my children, I always wanted them to know I would do whatever is necessary to care for their needs but that it is always important to acknowledge the feelings we are going through when we are going through them. I made a conscious effort to try to show good (appropriate) behaviors for my children to see so they could understand what they were going through and how to hopefully mimic a response. (if that makes sense).
We also allowed the media to follow us and document our journey. There were times I wanted to kick the cameras out of the room during difficult times, but we realized how important it was to allow those raw feelings to be shown to the public. It was difficult to allow myself to be vulnerable and acknowledge those times, but to also stay strong for my family and not compartmentalize those feelings too often.
Thank you @Kouimet for responding and sharing so candidly here. That is pretty cool that you were modeling thsoe behaviors for your children. You are obviously a great mom. That is so fascinating that you had a video crew documenting your journey. Over what period of time was that taking place? That is the ultimate version of being vulnerable to allow those raw feelings to be shown to the public. Who conceived that idea? What was that conversation like within your family when deciding to do that? Where is that footage/documentary now?
Transplant Patient
When I went through my initial transplant journey, I feel like a lot of details were public (and many without my explicit consent, as I was sedated for a large portion of time). I come from a small town, everybody knows everybody, and my story was the thing that captured people's attention. Initially I didn't have a problem with being so open and vulnerable, and while I don't regret anything I did then, I wouldn't do it the same way now. When I had my abdominal wall transplant in November of last year, very very few people even knew it was happening until it had already happened, and that was on purpose. I feel very strongly about being the one to give information on my situation.
I do talk about my story quite a lot, and have done a number of advocacy projects over the last few years, but the difference for me is being able to curate what is being shared about me. Not everyone is entitled to or deserves to know the intimate and vulnerable details of my process. People often remark that I'm really vulnerable in what I share, but I don't view it that way because if I'm talking about it publicly it means I've already processed it, worked through my feelings and curated a way of presenting the story to others that I feel comfortable with.
@AliEm14 I am so glad you didn’t give up on me. You followed up and encouraged me and even promised to help me on my advocacy efforts wherever they took me… Thank you so much for that. I am truly grateful to you for the opportunity to be part of this platform, and to begin to meet some of the amazing people who share this sacred space.
I am taking away so much from what you wrote in this discussion. Perhaps writing my memoir was a big step and I am still processing the events of my life before and after transplant. I have been very emotional recently maybe I have overshared at times or undershared… I just have to believe that what I shared was what I was supposed to share at that moment.
I like how you took control of curating what information you wanted the public to know, especially in your second or most recent transplant situation… I hope we get to know each other better and better and appreciate your responses and interacting with us here on the platform.
@Jay My son Matthew went into kidney failure in 2011 at 5 months old. In 2012 we did the first mini documentary to show a day in the life of you can see here: https://youtu.be/v0Va2H5W9nw
which got picked up by the local news who made a series of videos you can see here: https://youtu.be/Jpm10u32s4Q and https://youtu.be/qM1IumzwhHc (which also shows part of the actual transplant operation) and then videos close to discharge: https://youtu.be/TjoRqHW2AYs and https://youtu.be/V2w9SiDBcEs. Then our donor's mom agreed to having our first meeting recorded : https://youtu.be/HmhgzWeuyUA
We made a video with our donors mom and sister with Donor Network West that they use to educate and inspire our community https://youtu.be/oyHZS0nIri4
A few years later we met a married couple who lived in Nepal and needed help as the husband was dying and unable to get the care he needed. People Magazine helped us reach more people when they did an article and video for their March 21, 2022 article : https://people.com/health/mother-of-2-kids-who-suffer-from-deadly-disease-opens-her-home-to-man-from-nepal-with-the-same-condition/ and then the Tamron Hall Show picked it up: https://tamronhallshow.com/videos/why-parents-of-two-children-with-rare-disease-are-fighting-to-save-a-stranger-with-it/
Just a few weeks after these aired, my two kids on dialysis received their kidney transplants less that 24 hours apart. brother-sister-in-need-of-liver-transplant-have-an-update-for-tamron and the news showed it here: https://abc7news.com/siblings-kidney-transplant-ucsf-two-get-in-one-day-family/11767544/ and here: https://www.cbsnews.com/sanfrancisco/news/antioch-siblings-kidney-transplants-hours-apart/
Share your story as often as you can as long as you are comfortable doing so. You never know who is listening and how many people in can effect. Sometimes it gets picked up by a large publication and shared to bigger audiences, but even if that doesn't happen, dont stop sharing it. Each story can touch many lives. There are people who feel isolated and alone and have no one fighting for them. When we share our stories we share hope and inspiration. We honor the donors every time we talk about their gift. If we can help more people become donors, we can save more lives. Education is the best way to move people to get involved. My family jokes that I never shut up. The are correct. I will never stop talking about the gifts that saved my children and gave my life a special purpose.
Over the 17 years that I've had a transplant, I have kept my journey rather quiet. Nobody really knew any of my struggles over the years except for close family and friends. When my journey started the internet was barely a thing. Social media was definitely not around. Now, I am seeing how impactful advocacy can be for not just healing myself but how I can really help other people. There have been lots of worrisome times throughout this journey that I wished I could have leaned on people in a similar boat.
@Jeanmarie your comments are very helpful to me and others and we are leaning on and learning from you
THIS THIS THIS!!! I dont share everything, despite it looking like I might to others... however there are so many intimate details that I dont share. And what i do choose to share, I have done a lot of work on and processed it enough to feel open to sharing. There have been some things that I shared along the way in the moment because I have gotten great at managing certain situations and can process as its happening but there are also other things that are more private and i think that also comes down to a safety thing as well.