Kidney/Pancreas
How did you share your story?
How did you share your story with the outside world? I haven't told too many people my story. I haven't even told my whole extended family. I haven't shared it on my social media accounts. Not everyone I work with knows...
I feel like there is such a stigma around organ transplant, and organ failure, that I will automatically be cast as a failure, or a phony. I am a big advocate in the diabetes world and this is an opportunity to keep pushing for a advocacy for diabetes but also, it feels like opening myself up for let down. I am passionate about finding a cure for diabetes but now also transplant advocacy. I am just starting to navigate what that looks like, and I know I need to tell people my story and tell them what I am living through but I am scared. The "real world" does not feel like a safe space. Maybe I am crazy (well, okay, I know I am)
How did you share your story, and how did it go?
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Transplant Patient
I love this topic, and it's one I've been thinking about a lot recently.
When I was newer to the transplant space, and I feel like this is a similar experience for a lot of us, I was very loud and vocal about my story. I was excited, I was running on the adrenaline of what happened. And as time went on, I wouldn't say I ever lost my desire but it definitely changed shape. I began to realize that some details weren't necessary. I realized my lane so to speak (I love patient stories and community. ask me anything to do with policies and systems or science and I feel like pulling my hair out)
And as I moved out from my transplant date, there became this desire to just live my life. Transplant isn't the most interesting thing about me. I don't feel like I have to share my story. In a lot of situations, I'm realizing engaging in discussion (especially about policy or something going on in the medical system) is actually far more straining and taxing on my nervous system, and is terrible for my anxiety, so I've learned to pull back from those conversations.
It's a fine line, and I'm always walking it. I have a brief, edited version of my story that I'll pull out. I'm still fairly open in talking about the facts of my story, but my emotions and process are saved for my inner circle. I also try to hold to the standard of if I'm actively going through something I don't talk about it. More of the speak from the scar not the wound kind of perspective. I feel this is kind of a double edged sword, because I see immense value in people sharing their stories and that being able to impact someone else, but I also see the drawbacks. Everyone is different, what feels comfortable is going to be different for everyone, and we all have to find our own unique way of sharing our story.
We decided early on in our transplant journey to be very open and public about it because I wanted everyone to "see" the face of someone who needed a transplant. My son was 5 months old and needed a liver and kidney. He was on hemodialysis 6 days a week. We wanted to erase the stigma of it being a taboo subject and get people talking about it. We also wanted people to know that EVERYONE can help somehow and someway in the process of organ donation, even if they are never a donor themselves. We always hear how people cannot do something (I am too old, I have been sick with cancer, etc). There is still something everyone can do. We can talk about it. We can share stories. We can volunteer at Organ procurement organizations that do public education. We can do many many things.
We started with filming a short 7minute documentary on a day in the life. That got the attention of our local media and they began following us and filming. We gradually got attention of national news. The great thing about it is it was helping many others in our community because we got people to not only talk about it, but to register to be donors and in some cases, when one of these people who was moved by our story had someone in their life who passed, they made the decision to donate their organs because our story moved them.
We continue to speak at events, schools, hospitals, legislative meetings etc. We have made several videos over the years and worked with national organizations to make education videos and articles that are shared with high schools and community programs. When our story made it to People Magazine and Tamron Hall Show, it validated our story and more people paid more attention to the message we were trying to share and how important it is. TALK ABOUT IT. I understand not feeling comfortable in sharing personal stories, I dont mean to criticize at all. What I mean to say is Organ donation should be honored and donors should be celebrated as the heroes they are. People need to know that recipients are not failures or weak people who ruined their health with bad choices. They are every face in our community.
I personally feel like I have a wonderful obligation to share our story and hopefully get everyone I come into contact with emotionally involved in our story and be moved to DO SOMETHING about it. Register as a donor, talk to their family, help where they can. I think it wont be long before every single person will know someone personally that is effected with the donation process. We need to make it personal to everyone asap so they will feel compelled to do something about it.
Everyone has a story and it's beautiful because it is your story. Please dont ever feel ashamed or less than because you needed an organ. You are incredibly strong and you have a purpose in life.
Two articles were published about me and I am now planning to doa fundraiser for future transplant patients to continue to inspire others