Aidan Lives: An Open Letter to His Tissue Recipient

Dear Colleen,

We received your kind note thanking us for the tissue donation you received from our beautiful boy, Aidan. We cried when we read it, because we are consumed with missing our boy; but at the same time we were glad that a part of him lives on. We're glad that he was able to help you regain a strong, healthy knee.

I imagine you being able to do normal, everyday things now that you haven't been able to do for a long time: walking on a trail, lifting your child or grandchild, taking the steps instead of the elevator. It's hard for me to believe that a literal piece of Aidan has made this possible.

In your note you said that you didn't have enough of your own tissue available for an autograft reconstruction of your ACL. This is why you needed an allograft, a donation of tissue from a deceased donor. I did some research after receiving your note, to help me to understand better how this process of tissue donation works. I learned that the field is not without controversy, and that there are some serious concerns about the business of tissue and organ harvesting--such as limited regulation and tracking; but I also read the stories of others like you, who received gifts of life and health and hope.

Less than a month after Aidan died we received a letter from Gift of Hope telling us that a man from Chicago and a man from Skokie each received a second chance for sight because of Aidan's "final act of charity." I am hopeful that problems with the business of organ and tissue donation, especially those related to profiteering, will be resolved so that there are no longer impediments or ethical concerns regarding the decision to donate these gifts of incalculable value.

Mr. Peevie and I have both followed Aidan's lead and signed on to be organ and tissue donors--in part because we were so touched by your note. I hope many of the billions of loyal Green Room readers will join us.

Love,

E. Peevie

Aidan and Mr. Peevie. South Haven. Summer 2012.

The Immortal Life of Henrietta Lacks

I'm late to the party with this book review, as the book was published a couple of years ago now, and Henrietta's story has been updated on the pages of National Geographic and the New York Times. But for those of you who have not yet read it, or have not been around me when I'm going on and on about it--you deserve to be let in on the secret: this is an amazing story, and beautifully told by freelance science writer, Rebecca Skloot.

Henrietta Lacks died in 1950--but part of her still lives on, and I'm not talking about her soul. Her cells, people. Her cells. The Immortal Life is the story of Henrietta and her family and her now-famous immortal cells, known in science and medicine as HeLa, which jump-started the science of cell culturing and all the related scientific miracles that grew out of cell culturing.

When Skloot learned in a high school biology class about these omnipresent and imperishable cells, and about the woman they came from, she hungered to know more. She started on a journey through labs, hospitals, phonebooks, and cemeteries to get to know Henrietta and her descendants; and she crafted a tale of science, family, American history, and ethics that is unlike any other.

The cells were taken by doctors at Johns Hopkins Hospital, without Henrietta's knowledge or consent, during her treatment for the cervical cancer that ultimately killed her. They were cultured in a lab, and miraculously, they didn't die like every other cell sample that the scientists had attempted to grow.

Henrietta Lacks' immortal cells, stained with dye.
Photo from Smithsonianmag.com

Meanwhile, Henrietta suffered through intense and unsuccessful treatments for her cervical cancer, and died. Her children had no idea that part of their mother lived on until Henrietta's daughter, Deborah, received a phone call from a reporter, asking about her mother who had been dead for 20 years. The reporter wanted to know what she thought about her mother's cells being so famous and important to science and medicine--and Deborah said WTF?

Skloot's narrative traces the incredible story of Henrietta Lacks' immortal cells--"the first immortal human cells ever grown in a laboratory." Her cells were part of research into the genes that cause cancer and those that suppress it; they helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease; and they've been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers.

No one knows why Henrietta's cells lived and thrived--but they did; and the scientists who first successfully grew the cells sent batches of them to other scientists, who grew more of them to use in their own experiments. To this day, Henrietta's cells are living and growing and being used in medical and scientific applications around the world and even in space.

Scientists had been trying to grow living cells in the lab since before the turn of the century, but the cells kept dying. It was not until 1951, when Henrietta Lacks' cells began growing in the lab, that the science of cell culture was born. This happened to coincide with the biggest polio epidemic in history, and HeLa cells were used to grow the Salk vaccine and demonstrate its effectiveness. These experiments soon led to advances in virology, genetics, radiation research, and many other branches of science and medicine; they went into orbit on satellites and with the first humans;

Henrietta's cells quickly became famous around the world; they were "taken, bought, sold,
and used in research without her knowledge or theirs." Meanwhile, her family remained poor and unknown, having no awareness and no control over the use of their own genetic material.

Henrietta’s drama becomes the story of ethical dilemmas in science and medicine: informed consent, medical and genetic privacy, patient confidentiality, genetic discrimination,
biological patents, and cell ownership. With sensitivity and perseverance, Skloot digs out the details of Henrietta's life, and the lives of her family members; she weaves the complex science and the deeply personal family story into a colorful, touching narrative.

How To Say What You Mean

I recently saw this quote on Pinterest:

"Sometimes when I say, 'I'm OK,' I want someone to look me in the eyes, hug me tight and say, 'I know you're not.'"

I do not understand this, and even though I know I should not be judgy, I sort of am. I realize that I am a horrible person. I realize that many people in my life, including people that I love, and including people in my family, can probably totally identify with this.

The Pinterest quote reminded me of an episode on a recent vacation: I had prepared and served a festive meal for the family, and a few minutes after we finished eating, and well before our digestive systems had fully engaged, my SIL started clearing the dinner dishes.  "Sit down," I suggested, "Relax.  I'll get to those later."

She kept cleaning up, and said, "You don't really mean that." She asserted that everyone appreciated help with the dishes after whipping up dinner for a bunch of people.  "I always do this for my girlfriends," she said, "Even when they say, 'Oh, don't bother!'--because I know they don't really mean it."

"Well, I really mean it," I said.  "I wouldn't say it if I didn't mean it.  It's really nice of you to do the cleaning up, but I honestly wouldn't mind cleaning up a little later. I'd be happy to have you sitting down and relaxing."

Apparently, this is what people do: they say things they don't mean. Folks seem to believe that people don't say what they really feel, and that their true meaning and intention must be discerned from something other than their words. And on the flip side, they communicate in the same way, skirting around a direct statement and expecting their listeners to read between the lines or interpret their body language.

Sometimes I feel like I am from a different planet, or that I have some kind of narrow form of autism that makes me unable to read social cues, because this just does not make sense to me. This confusing mentality leads to Harlequin-romance-type misunderstandings and conflict. 

I believe that we should take people at their word, and act accordingly. Say what you mean. Don't say what you don't mean. Ask for what you want or need--but at the same time, have very limited expectations of what people can and will do for you. This is the Peevie Rule for Clear and Sensible Communication.

My immediate response to that Pinterest quote is, instead of saying that you're OK, why wouldn't you say, "I'm not OK. Could I have a hug?" This seems more--incoming judgyness!--mature--and more likely to elicit the outcome you hope for.

It is a fundamental sign of emotional health to take responsibility for one's own happiness. I tell my kids, "You are responsible for your own happiness. Not me, not your siblings, not your teachers, not your friends. If you are not happy, do something about it."

"Most folks are just about as happy as they make up their minds to be." --Abraham Lincoln

What good does it do to say you're OK when you're really not? I mean, unless you're in a social situation, like your workplace, where it's not necessarily appropriate to ask for hugs and to lay your true feelings right out there. But I'm guessing that those are not the people you want looking deep into your soul and sussing out your need for a moment of physical reassurance.

When you're around people from whom a hug is appropriate and would feel good--why would you not just say, "I'm so sad. I could use a hug"?

It is one goal of this blog to encourage people to say what they need, and to express in direct, non-metaphorical language, how they feel and what would help them feel better. Let's practice together:

"I'm feeling lonely. I'd like someone to hang out with tonight. Are you available?"

"I feel sad. I really miss [person's name that you miss]. I'd like to talk about him/her."

"Would you be willing to help out with the dishes tonight?"

"I'm sorry to cut you off, but I need to get off the phone now."

"I know you want to keep reading my delightful blog, but I really want to end this post and go watch some TV."

Let me know how it goes. Alternatively, let me know if you think my expectations are completely unrealistic and that I don't have any understanding for how real people communicate in western culture. I can handle it.

Please, Make Me Cry

My dear friend Roseanne came over to watch movies and drink margaritas. She told me that she and her daughter had been to the cemetery, to visit Aidan's grave. The grave is marked with a flat granite headstone with a slightly curved top and a simple inscription: "Aidan Kenneth Bradshaw, 1997 - 2012."

Roseanne continued her story: "Darlene sat down on the ground next to the headstone and we talked about Aidan and your family," she told me. "She brushed some leaves off the marker. Then when we left, she kissed her fingers, touched them to the stone and said, 'Goodbye, little buddy.'"

I felt tears beginning to burn and press behind my eyelids, and I couldn't stop them. I put my head in my hands and sobbed, grief stabbing through my chest, my lungs, my voice. Roseanne wrapped her arms around me and held me while I cried. We stood like that for a long time--me weeping, Roseanne holding onto me, holding me up, crying her own tears as well.

Eventually the tears slowed and stopped, and we resumed our conversation about pretend boyfriends and realbeverages; we poured and talked and laughed and remembered. Later in the evening she said, "I'm sorry I made you cry when I told you about going to the cemetery."

"Don't be," I said. "Crying is good." I don't necessarily understand this, but I know it's true. I know that when someone gives me the opportunity to cry for Aidan, I am always grateful. I know that it hurts, it's exhausting, it's ugly--but it's necessary.

William Shakespeare wrote, "To weep is to make less the depth of grief" (Henry the Sixth) and Victor Hugo said, "Those who do not weep, do not see" (Les Miserables).

As always, the opinions expressed in This Blog are backed up by research: In 1977, William H. Frey wrote the first definitive research book (discussed here) on the biochemistry of emotional tears. He proposed that emotional tears, which have a different chemical composition than irritant tears (caused, for example, by cutting onions), not only lubricate, clean and protect the eyes, but that they remove toxins from the body. They literally produce a physiological response that makes you feel better.

I loved that story about Darlene. I loved picturing her there, caring about Aidan, missing him, talking about him. 

What I know about crying is this: when we have lost someone dear to us, there are tears inside of us. We have three options: we can keep the tears inside, we can cry alone, or we can cry with a friend. Repressing the sadness--keeping the tears inside--is only going to lead to anger, depression, panic attacks, and possibly hair cancer.

When I cry for Aidan, it's not an elegant, Hollywood kind of crying, with a delicate tear wetting my long eyelashes and tracing my perfect cheekbone. No, it is not even a bit pretty. It's monsoon-like, with wracking sobs, swollen eyes, and frowny, joggly jowls. But I don't give a damn.

And if you are willing to be with me when I'm having one of these episodes, if you are willing to hold my hand or let me smear snot and mascara on your shirt, if you are not afraid of the ugly cry, you are giving me the only gift that means anything to me right now, in this season of grief.

Sometimes a friend will say, "If there's anything I can do for you, just let me know." There's very little you can do for me that will help me get through this excruciating grief--except this: say Aidan's name to me, ask me how I'm doing in this lonely valley and really want to hear the answer; tell me a story, thought, anecdote, or memory you have of Aidan; if you didn't know Aidan, tell me a thought about what you have learned about him since he died, or ask me a question about him. You can even ask me about his death. Any of these will most likely make me cry, and sometimes this crying is going to be ugly. 

It may make you uncomfortable; it may make you want to help me feel better or get over it. Resist this temptation. Rather, just be there with me. Touch my arm, hold my hand, cry your own tears--but don't try to say anything or do anything to make it stop. It will stop, eventually, and I'll look horrible and feel exhausted--but I'll also feel relief that that quota of tears has finally been released and will never need to be cried again. There are more to come--there will never be a time when I have cried all the tears I need to cry for Aidan; but you will have given me the gift of releasing a small portion of this grief, and I will be grateful.

Please: make me cry.