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Say What?! Tissue Donation in the News

It’s been an interesting few days for people who follow media stories about tissue donation!

My inbox has been busy, too. I got this email from a donor mother late Saturday night, joining about a dozen others:

Brianna, I don’t know what to say when people tell me I murdered my baby he was already gone. I think my family doesn’t understand what I did becaues (sic) of the news story that was on the tv. Do you know wwhat (sic) to say to them.

Heartbreaking! I hate to see a special family like this hurting. And yes, I am here to help.
 
Since the Planned Parenthood/fetal tissue for research story hasn’t gone away yet, here’s a little help for the donor families and donation supporters out there.

PLEASE NOTE: the best advice I can give you is that we don’t want to seek out these tough conversations. We would rather respond kindly to misinformation than go out and find an argument. 

That said, sometimes hurtful and misinformed statements come your way. Let’s talk about how we talk about donation!

First and foremost, it’s important to #SeparateTheDebate. The debate over women’s health issues, like termination, is not the same debate as one over the legality or ethics of tissue donation. So, when I saw some inflammatory stories in my own friends’ Facebook feeds, I messaged each friend who posted with this respectful note:

Hi (friend)!

I wanted to reach out because I saw the Planned Parenthood story on your feed. You know, good people can disagree about a lot of issues. I just wanted to let you know that if you ever have questions about how tissue donation for research saves lives, and paying for the safe storage, transport, and containment of tissue donation is legal and sensible, I’m here.

We definitely don’t have to talk about Planned Parenthood, but I did want you to know that as a donor family, we know firsthand that donation for transplant AND research saves lives, and I’m happy to tell you more about how it works.

Love, Brianna

See what I did there? I separated donation from the fiery debate about Planned Parenthood. That’s an important first step!
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Next, if people continue to post articles that talk about the *selling* of tissue, take careful, calm, and thoughtful action. I posted this to my own Facebook and Twitter feed.
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Finally, if you would like to point people to a technical, academic source for talking about the bioethical issues around fetal tissue donation, here’s a blog post I wrote with a bioethicist colleague at the American Journal of Bioethics. We talk about some of the finer points of separating the debate.

Reading through some of the resources I have linked to, you might surmise that I have personal political beliefs that may or may not align with yours. It’s okay to disagree about these tough issues! We can all engage in respectful discourse without demeaning the compassionate gifts of millions of American families–gifts of donation, transplantation, and research.

For me, I want to protect the gift, protect the intention, and protect the outcome–for life saving transplants and medical research. I hope this installment of “Say What?!” can support you if a difficult conversation comes your way! Remember, separate the debate!

This has been an installment of the “Say What?!” series. Do you have a question about donation or transplantation that is hard to answer? Email me, and I’ll happily share my ideas! You can read the first two installments of the series here.

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Day Three: Staying Passionate, Positive, and On-point for National Donate Life Month!

Today’s tip is a part of my new “Say What?!” series, where I help you answer tough questions from the public about donation and transplantation.

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Many of you have probably seen the tragic story about the young man in Georgia, a heart recipient, who died in a high-speed chase with police.

Sometimes, with stories like this, people might ask you: “Why did this kid get a transplant? And not someone else?”

Or: “Do you think that he should have received a transplant?”

If you have attended any Positive Rhetoric trainings, you might have an idea of what I’m going to say next.

First, acknowledge the tragedy. Whatever your personal opinion might be, we can all agree that this is a very sad story.

“Bad things happen in this world. That story is very tragic, on many levels.”

OR

“I was very sad when I read that story.”

Next, inquire.

“Do you have any questions for me about how the transplant wait list works? It’s held by an organization called UNOS, which is separate from Donate Life, but they do the important work of matching gifts of life to those who need them.”

Then, give a statement of confidence in the medical professionals who make donation and transplantation possible.

“It’s a complex task, and I believe they are good people doing good work to save as many lives as they can through donation and transplantation.”

Finally, empathize.

“Gosh, I don’t know all the facts of this young man’s journey. You know, I wish we didn’t have to have a “LIST“–that EVERYONE who needed a life-saving transplant could receive one. My heart breaks for his family, and all those families on this difficult path of organ transplant.”

If someone continues to question you about the situation, keep pivoting back to one of my favorite tools: empathy.

“You know, if this was my child, I sure wouldn’t want people to speculate about the situation…what I can tell you is, I’m grateful that hundreds of thousands of people around the world are helped through donation and transplantation every single year.”

Do you have a question about donation or transplantation that is hard to answer? Email me, and I’ll happily share my ideas!

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Merchants of Hope or Merchants of Tragedy?

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Maybe it’s all the crazy fear-mongering of my particular local elections (I’m not linking to coverage because it’s not worth your time to read the nonsense), or maybe it’s the completely bonkers media response to Americans contracting Ebola (if you’re worried, these people could really use your money)…or maybe it was this article.

An article about just how many dead bodies we have to see on screens lately.

The bloodless massacre of millions in a blockbuster movie.

The death-y death death death of the dozens of mystery/cop/zombie/cop zombie/medical dramas.

Whatever the motivator, I asked myself a question: Brianna, are you a merchant of hope, or a merchant of tragedy?

You see, I work in a field where we talk about death, life, and the liminal space between–all. the. time. Every day I speak to people who almost died, people whose loved one almost died, or people whose loved one did die. We stand in the space between those who are ill, and those who are lost, and the space between them is donation and transplantation. The gift of life.

Talking about hard things? Suffering? Sickness? Dying? That’s part of what happens when you work in the world. To get a transplant, you must be very sick. Very, very, very, very sick–in a way few people can understand.

To have a loved one become a deceased donor–well, someone you love died.

Brianna, are you a merchant of hope, or a merchant of tragedy?

Telling the stories we do, the powerful stories that help people trust in the idea, the outcomes, and the people behind the outcomes of donation and transplantation…well, we talk about the tough stuff all the time.

But, I want you to ask yourself this question: do you tell your story in a way that inspires hope? Or hope AND tragedy? Does your story scare people into worrying about a disease, an accident, a terrible what-if of circumstance? Are you pushing tragedy along with hope?

Sometimes when I have spoken about my mother’s death (maybe depending on the day, maybe depending on the time), I think I have veered, as these silly television shows do, into tragedy-based storytelling.

“Watch out!” I might accidentally telegraph, “Or someone you love will die too!”

“Watch out!” I might imply, “Or something bad could happen to you!”

I don’t want to be a merchant of tragedy, like those crude shows. I don’t want to stress people with thoughts of death and illness and fright. I want to tell my story of hope.

I have to tell them something difficult–that my mother died–but I need to make sure that the thrust of my story is not fear, nor pity–but hope.

Do me a favor. Think about how you tell your story. Think about how you talk about the hard things (though I hope the inappropriate things are ALWAYS back stage!). Do you need to recalibrate your balance of tragedy and hope? Do you need to shift from darkness to light? Do you inspire others, or leave them a little fearful for the future?

I’m a merchant of hope. I’m an ambassador for donation and transplantation. I will let all the others deal in fright–someone else can say BOO!

(And with that–Happy Halloween to you all.)

 

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No or Not Yet

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Sometimes the things I write about are equally applicable to my personal and professional lives.

This is one of those times.

I have learned something as a consultant lately that I want to tell you about. It’s a tiny mistake in language that we all make at times, myself included. Sometimes I say NO when I mean NOT YET.

I also forget that NOT YET is a perfectly acceptable answer. I am quicker to a NO than a NOT YET.

I meet many donor families and recipients in my work. I meet people who have gone through, or watched their loved one go through, harrowing medical experiences. I meet people who have lost someone they love in a tragic way.

Since my way of connecting with these people is through donation and transplantation, I often meet them very shortly after their loss or their transplant. It might be only a few weeks or months past their loss or their brush with death. They tell me: Brianna, I am so moved by my experience. I want to start volunteering right away.

From years of experience, I can tell you that if this is within 6 months to 1 year of their traumatic event, volunteering for donation is not a good idea for them. Not yet.

Not yet.

It’s not a NO, it’s a NOT YET.

The OPOs that I work for who have a compassionate guideline for training and deploying volunteers  as ambassadors (again, between 6 months and 1 year post loss or transplant) tend to have better outcomes for their volunteers, their staff (who work with these volunteers), and their audiences.

Volunteers who come to my trainings too early in their grief journey or trauma processing are too easily re-traumatized *by just the training itself* to be deployed to talk about their experiences. When volunteers speak to audiences too quickly after their connection, they tend to bring the audience to their place of trauma (instead of meeting them with a message of hope). Asking them to be ambassadors of a message that is powerful and clear while simultaneously processing their own grief is simply too much to ask of them, and too risky for communicating a message to the public.

When a donor family or transplant recipient/family member asks about volunteering and they are still very close to their trauma, I believe that the best response is a compassionate NOT YET. It’s not a NO, it’s a NOT YET. We can protect their early grief, and keep them from re-traumatizing themselves, with a kind and caring NOT YET.

In that spirit, I will remember to use my thoughtful NOT YET this week. Maybe you will, too.

 

 

 

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We walk again and again.

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(Photo and graphic by Brianna Doby)

I like Thoreau. Do you like Thoreau? Why do you think we all like Thoreau so much? This little piece outlines a few reasons why.  I prefer to think that as our culture feels the burden of so much noise, so much clutter, so much so much, that Thoreau’s words feel like *sound*, like clarity, like an aspirational homestead for our overwhelmed souls.

Or maybe he was just an excellent writer. That works too.

I read this quotation recently and decided to write about it for you. It’s been on my mind as I travel to more and more places, giving my trainings, smiling a lot of smiles, meeting so many incredible people.

I wonder, sometimes, if the time we spend working and learning together, if it stays with you.

It definitely stays with me. I’ll let Thoreau tell you why:

As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives.

I think over and over again the thoughts that I wish to dominate my life. Empathy, connection, hard work, kindness, hope. I’m lucky–it’s my job to think those thoughts! It’s literally what I do for a career. Think, speak, make mistakes, try again, get ideas, think, speak, and write and speak some more.

But you: you don’t do what I do (which is think and talk a tremendous amount about advocacy and rhetoric). I come into your lives for just a few hours, maybe a few days, and I give you lots of things to think about in your personal advocacy, and I wonder what you leave with.

You have big, broad lives, and our training time is so little in the scheme of things. Yet, even with that smallness of scale, I certainly want our work to be useful to you, now and in the future. I want to be a good steward of your time and challenge you to add a few skills to your set.

Then I think–what sticks with you the most? I am sure the things that you remember the most are the things that you then practice the most, which deepens those paths for you in your mind.

I reach out to the people I train on social media and here on the blog with the intention of reinforcing the tools we learn together, and helping us all walk again and again the paths that to deepen our understanding and our skills. Can I do better with helping you walk those paths? Should I develop some kind of practice guide that helps you retain the things we learn?

I am not sure. If you have ideas, or if you think that I can do something to walk beside you as you make these deep paths, tell me. I would love to hear from you. I want the tools I teach to be useful, like a long-worn path. That path is important because it takes us to the same vista every time: a view of the world without a wait list.

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Rising above the debate

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Today, the New York Times has a “Room for Debate” feature that discusses the case for and against changing incentives for living kidney donation.

These are smart people, talking about complex ideas, making arguments they passionately believe in.

Fantastic! Complex medical, ethical, and socio-economic issues should invite the best minds in the country to contribute their research and knowledge to finding better solutions. I am always happy to see the brilliant people put their effort towards saving more lives through organ and tissue donation.

However, as the staff and volunteers at the OPOs and transplant centers that make donation and transplant possible *under our current, ethical system of compassionate, altruistic donation and transplantation*, we sometimes hear more about the myths these smart discussions stir up, than about the solutions the debates propose.

Debates are debates because people have the time, energy, research, and resources to engage in an extended discussion about a complicated issue.  Having a long, intense conversation with a person standing at an elevator about a complicated issue with ample time for research and rebuttal is just not possible!

I frequently tell the people I train: many times, when speaking about a passionate belief in donation and transplantation, you might well be prepared to have the debate with a person who disagrees with your donation decision. The problem isn’t whether or not you are ready to engage that person in a discussion, the problem is 1) whether that person is ready to listen and engage in that discussion and 2) whether that person has the time and space and emotional tools to engage in that discussion.

It’s not you, it’s them! And they are the intended audience–so meet them where they are, not where you already stand.

Today, if this article raises questions in your community and invigorates a some myths or questions that you need to address with fact, rise in altitude. Here are three good turns of phrase to rise above a debate you and your audience don’t have the bandwith for during a quick conversation–while putting forth the life-saving message you stand for *right now* as an advocate:

  1. Gosh, I’m not a surgeon or legislator or bioethicist. What I can tell you is that many thousands of people on the wait list die every year. Right now, you and I can help those people sick and waiting on the list by saying YES to donation and transplantation as registered donors. If the American public decides to make improvements to that system, with new programs or legislation, I certainly would support any efforts to help the 122,000 folks who are sick and slowly dying on the wait list.
  2. Goodness, that’s in the news again, right? Well, I’m no expert on bioethics or public health policy, but what I can tell you is that registered donors save lives. What you and I can do right now to help those people is make a donation decision, and tell that decision to family and friends. As with any other public health issue, I want the doctors and scientists working on this have the funding and support they need to save the 122,000 sick people who are in need of a transplant today.
  3. A lot of very smart and passionate people are working on ideas to help save the lives of 122,000 people dying on the wait list today. What I can also tell you is that donation and transplantation need support. You know the great work done by ALS advocates with the ice bucket challenge? In the field of donation and transplantation, we need debate, discussion, funding and new ideas to solve the big problem of regular folks getting very, very sick and not receiving a life-saving transplant in time. I look forward to seeing what Americans can do to register more donors and save more lives as people debate possible changes in policy!

Do you like these ideas? So do the good people at Gift of Hope, OneLegacy, Donor Alliance, LifeSource, IOPO, and many more OPOs and partners in the field! I run entire trainings full of tools and tips just like this to help staff and volunteers stay positive, passionate, and on-point when telling the life-saving story of donation and transplantation in our communities. Email today to find out how I can help your organization rise in altitude to tell a more powerful story, and save more lives.

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Be nice. No, be even nicer. And really mean it.*

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I meet a lot of people every year.

I also train hundreds of people to become grassroots community advocates every year.

Meeting people is kind of my wheelhouse. Getting people to connect empathetically with others is also kind of my wheelhouse.

I recently read and enjoyed this Atlantic piece, based on a more colorful and NSFW essay by the excellent Paul Ford on Medium. The Atlantic piece focuses on a specific trick of politeness and conversation from Ford’s essay. Everyone can use it–it’s just four words–

“Wow, that sounds hard.”

As in, we’ve just met, I ask what you do, and *no matter what you say*, I reply, “Wow, that sounds hard.”

Tinker, tailor, candlestick maker? Doesn’t matter. “Wow, that sounds hard.”

I have two reactions to this, one personal and one professional. I’ll start with the personal reaction:

Darn, he’s telling everyone my trick.

Acknowledging that the path each person walks has its own *real and perceived* difficulty is a key to connecting with anyone, stranger or friend. I’m telling you, use it, and see the magic of empathy work in every conversation.

Professionally, I have a separate reaction:

I need to double down on empathy in my trainings.

I’m a likeable person. My mother taught me about that listening is important, and people who listen are better at making connections. I listen, therefore you are able to tell me about yourself (or who you feel yourself to be in that moment, which is okay, too) and then, when you feel me listening, you feel connected to me. Feeling connected is so nice. Listening makes that connection possible.

I like listening. I like being likeable. I sometimes wonder if my work training people is just as much about me listening to what they feel–so passionately–needs to be heard, as it is about the tools I give in my workshops. “I hear you!” I am saying, silently, with my friendly smile and my good eye contact. “You are important!” I am saying, silently, with a look of concentration and my lean into our conversation. “This moment matters!” I telegraph, with my lifted eyebrow and my hand on your shoulder.

Connection. Listening. Empathy.

I recently held a staff training where people talked about their roles in a large company. Hearing them put their own words about their challenges, achievements, and struggles was so enlightening. Many times, what I heard between their words and their smiles and their nerves at the microphone was:

“Wow, my work is hard. See? What I do is hard!”

Yes, what you do is hard. In the field that I work in, particularly, this field of liminal spaces between last breaths and first breaths, waiting breaths and hoping breaths, the between-times of life and death,  transplantation and donation, yes, yes, work is hard.

Wow, that sounds hard.

Professionally, I’m going to use Ford’s tip as a part of my next training. I’ll tell the good people I train: the best connectors, the people who make the biggest difference in this world, they seek to listen to others as much as they speak. If you connect in empathy, you can lean into that connection to then persuade people to commit to a donation decision that will save lives.

Personally, the next time I see you, and we meet, and we talk about what you do, I’ll say “Wow, that sounds hard.” And I’ll mean it.

*Something I have said to my 7 year old many times.

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1:3 your 3:1

Those of you who regularly read my blog know that I have very strong feelings about social media. I have written in a lot of detail about what I like about social media (access!), and what I think is lacking (conversation! reconciliation!).

A colleague of mine recently asked what she could do to make her social media work at an OPO more valuable to her community and more effective as a tool to influence public opinion. I’ll share with you the advice I shared with her:

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Many of you know my 3:1 rule for social media, which I think is important for volunteers and social media managers alike. For every 1 post that reminds people of the difficult, sad, or tragic parts of life, we need to add 3 uplifting and motivating posts to remind people of the extraordinary impact of donation and transplantation. That’s a great way to keep the story of donation and transplantation powerful, positive, and persuasive.

Also, no one likes a sad/mopey/depressing Facebook feed. True story.

I think most of us use the 3:1 rule pretty naturally. The 1:3 rule, however, is less intuitive.

Brianna’s 1:3 Rule:

For EVERY post you make to any social media platform,

engage with your connections/audience THREE times. 

Comment on their posts, re-tweet them, favorite and reply, etc. And–for goodness sake–if you ask a question on social media, and followers take the time to reply, make sure you reply to each and every one of those responses. With a lot of enthusiasm!

We ask people to re-post, re-tweet, and re-spond to so much. The only way we can start thoughtful conversations with our followers, and with people outside the echo chamber of those who already agree with us, is to engage in more conversation, and less shouting into a crowded room.

Reply, respond, and reconcile. Start and finish conversations. Ask questions that you want to know the answers to, and then put those answers to work.

I challenge myself, and all of us in the donation and transplantation community, to use the 1:3 Rule to develop a conversation with those who don’t yet support donation, or have not yet made a donation decision. That’s a great way we can persuade NEW people to commit to donation and transplantation, and save many, many, many more lives!

P.S. Engaging with more comments, replies, and conversations on social media could make you happier. Bonus!

 

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“Real conversation and reconciliation”

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I read an interesting quotation from a recent interview with Hillary Clinton.  Per Mashable:

The former Secretary of State also laid out some lofty expectations for the future of social media, an area she hopes will mature over time. “We have a lot of people communicating, but they’re not listening and they’re not looking for common ground that they could occupy together,” she said. “It is a fact of social media right now that too often people use it as a weapon instead of an opportunity.”

Clinton added that she hopes people will someday use social media for “real conversation” and “reconciliation,” and not just for arguing and bickering over differences.

Brilliant.

I follow many OPOs and non-profits related to donation and transplantation across social media. Here are  the things I have noticed:  Everyone has competent people tweeting/posting. That’s great! No big hiccups (though, if you are cross-posting your Facebook status updates as “fb.me…” links to Twitter, PLEASE STOP–you know who you are).

Yet, I notice a serious deficit. Those of us who run social media accounts are not always listening and, even more bothersome, not engaging.

How many times in a month does your OPO post the same “myth” or “fact” statement, and get zero favorites, comments, retweets?

A lot. I know, because sometimes I count. The answer to that question is A WHOLE LOT.

If you and your organization want to influence and persuade people who are NOT registered, what do you need to do? Do you repeat the same posts and hope against hope that those posts somehow mysteriously, ephemerally, leave the circle of your die-hard supporters and make it out into the wild world beyond your followers?

Is that working for you?

Are you getting the results you want as you post, re-post, and re-re-post the same information that is NOT getting likes, shares, re-tweets, and comments?

Or–

Could you post to inquire, discuss, and engage with the people who ARE NOT in agreement (yet) with donation and transplantation?

Could you listen to their reasons for not registering, and engage in civil and productive discourse that might lead to more registrations and more awareness?

Could you seek conversation and reconciliation by engaging OTHERS, not just your die-hard, supportive audience?

I have described the Twitter experience (on more than one occasion) as millions of people shouting in a room with no one listening. BE THE FIRST ONE TO LISTEN. That would be an innovation in social media for OPOs! Start actual conversations on Facebook, Twitter, Instagram, Pinterest, Alignable, etc. If you ask a question, respond to every response! If you want real feedback, ask for it and use it and engage with it.

Actual conversations, where the dialog goes both ways, would be a massive change for our field. Instead of thinking “I posted at optimal frequency for all of our social media platforms!” (<—please do not reach for goals like this), try “I posted/replied/engaged XXX number of people who are NOT generally engaged with us today!”.

Are you starting conversations, or shouting in a loud and crowded room? Can you be the first to listen, and, in doing so, reconcile?

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Never judge a liver by its…cover?

Livers.

People need them.

Sometimes they don’t work.

That’s another place where donation and transplantation can save lives.

I can’t lie. Every time I meet a liver recipient, I get this tight, cringe-y feeling in my chest:

What terrible things have random people said to them about their liver transplant?

I have not met a single liver recipient who did not have at least one story to tell about someone judging them for needing a liver transplant.

“It’s too bad you couldn’t stop drinking.”

“How long were you an alcoholic?”

“Yeah, my brother in law is an alcoholic too. I bet he needs a liver one day.”

“Don’t you feel guilty about drinking so much you killed your own liver?”

First, the facts from Medscape:

The most common indications for liver transplantation in the United States are hepatitis C virus (30%) and alcoholic liver disease (18%). Other indications include the following:

  • Idiopathic/autoimmune liver disease (12%)
  • Primary biliary cirrhosis (10%)
  • Primary sclerosing cholangitis (8%)
  • Acute liver failure (7%)

  • Hepatitis B virus (6%)
  • Metabolic liver disease (eg, inborn errors of metabolism) (3%)
  • Cancer (3%)
  • Other (3%)

Biliary atresia is a common indication for liver transplantation in pediatric patients.

People like to put on their judgy pants when it comes to liver transplant, but, as you can see from the above, 82% of liver transplantation are a product of SOMETHING OTHER THAN ALCOHOLISM.

Let that sink in for a minute. Roughly 8 out of 10 people that you encounter who need or have received a liver transplant are not in that position because of alcohol.

Here is the other thing. If you are an alcoholic who needed a transplant, you still deserve your transplant. I don’t care why you need a transplant. I care that you are/were suffering, and that you need help, and who in the world am I to judge your life choices? I am overjoyed when anyone on the list is saved by donation and transplantation.

That said, I know it upsets many of you when people say things that make you feel judged. I can help. Here are some of my suggestions for what to say when people make assumptions about you or the one you love:

  • When people make assumptions about my life, I feel sad. I received a special gift because I was very sick. 82% of liver transplants are caused by other illnesses. Would you like to know more about my wonderful donor, and how I honor my gift of life?
  • Goodness. This feels upsetting. My infant daughter was one of the 82% of people who need a liver transplant for illness other than alcoholism. When people ask me if my tiny daughter drank alcohol, I feel really sad that there is so much misinformation about donation and transplantation in our community. Can I tell you about our wonderful donor family?
  • Gee….I feel uncomfortable right now. Are you asking me what caused my liver disease? Because I can tell you about the illness that made me sick, and how donation and transplantation saved my life.
  • I have made many mistakes in my life.  I am now sober and walking a healthy path. Would you like to know more about my hero, who gave me a chance to be sober and live a life I never would have had otherwise? She’s the person I would like to honor in this conversation.
  • Gosh, I guess this is why it’s tough to judge a book by its cover. 82% of liver transplants are caused by issues other than alcohol abuse. Would you like to know more about how donation and transplantation saves lives?

Let me know in the comments if this post helped you.  Do you have questions or suggestions–email me or comment below! Special thanks to my wonderful trainees Janet, Cathy, Debie, and Wes for their ideas and input on this post.