General
Advocate and initiate the conversation
We need to continue to take the stigma out of talking about the beautiful gift of donating organs. Too many people still feel this is a taboo subject to talk about and they avoid having open honest discussions about it. Some people say it is never a good time to bring this subject up but I disagree.
How often do we share something we saw on the news with our friends and family? How often do we suggest a new restaurant or movie to our people? We talk about things that move us, inspire us, outrage us or affect us. Why not talk about organ donation and the beautiful gift it gives to people, often from strangers who wanted to help.
We speak at many events and one thing I always bring up is that we dont want to wait until tragedy strikes someone to discuss organ donation and how it works. We want to talk about it right now, when things are "normal" and we have the opportunity to share our thoughts and feelings as well as discuss facts and educate people. This usually introduces our topics of who needs organ transplants. I share my story of two of my children who required transplants and how it was very difficult for me as a mother to not be able to give my child what they needed to live. I had to wait for someone to die, for my child to live (they needed a liver and kidney from same donor which could not come from a living donor).
We move on in our storytelling about our experience with transplant life with photos and videos and then I usually introduce my oldest child, Carswell. Carswell talks about what it was like growing up with a rare disease and how things got worse in high school as their body started to fail them. They share in their own words about how difficult it was to watch their peers move on in life while they were forced to drop out of school and start dialysis.
When Carswell was still waiting on the transplant list for a kidney, we participated in a video campaign that is shown in all the public high schools in California. Its called the check yes video. Carswell has since recieved their kidney transplant. I want to share this video that Donatelife California put out for you to share with anyone you feel will benefit from seeing it. We always tell the students at the high schools and colleges to go home and talk to their families about this video and presentation they had at school today. Talk about it. Share what they learned, how it made them feel and have an open and honest discussion about organ donation and if they want to become a donor, register to be one and tell their family members about their wishes. It is not taboo. Its beautiful. Sometimes we are the answers to other peoples prayers. We (as human beings) owe it to each other to help in any way we can. What better way to leave a legacy than by saving lives after our deaths?
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Thank you so much for sharing! What a great video. I think that if we keep talking about it, it will become less difficult for people to talk about and discuss with their loved ones. Death always makes people uncomfortable. I have been faced with it since I was a kid, so it's become something that I am just comfortable talking about. My mom passed away a few years ago. She was so young and I never thought about talking to her about her wishes. I wish I had been more candid in discussing that topic with her.
Thank you for all the amazing work you do in raising awareness about organ donation!
Transplant Patient
I agree with @Jeanmarie in that death is always something I've felt comfortable talking about. I do understand that's not the case for everybody though. I think the more open and honest conversations we have around death, and the less death phobic our culture becomes the more we'll see the conversation around organ donation change.
I also think television shows and media that portrays organ donation and transplantation can help kickstart that conversation. Transplantlyfe did a webinar with donate life Hollywood a while back, and we discussed A. trying to get more accurate messaging about transplants into Hollywood but also using what is currently out there to start a conversation. And with more shows like Greys Anatomy having transplant storylines, I think that's a great entrance into a conversation people might not want to have otherwise because it keeps it at that abstract level, and we can talk about it using characters from a show versus real people and having that be where it starts
I suggest to people who say they have a difficult time talking about death and transplant discussions with their loved ones to use my family story or a story from another person who is open to sharing about how they were invovled with transplant. Sometimes bringing up someone who is unrelated might make it easier to talk about. Talking about what they expereinced might help bridge the gap to discussing how you would respond if in similar situation or at least what you would hope could happen.
It is so important to have conversations before it becomes a situation. I realize that my family wanted me to have a transplant, but they wouldn’t even listen to a conversation about how they could be tested to donate to me. I feel like a lot of people wait until it’s them to become educated about something. About six years ago I wasn’t doing really well so I had planned my funeral arrangements and everybody thought I was being so morbid, but it was important for me to do So that if anything happens to me, things would have already been prepared. I know people probably gets hard of me talking about transplantation, but I promise you I will speak about it for the rest of my life