Originally published 12.28.10 @ 8:36am
Habari Ghani? (What’s the News?)
Today is the third day of Kwanzaa. Today’s principle is Ujima: Collective Work and Responsibility. This principle is one that I love because it is the very reason for The Egg. The purpose of Ujima is that we are to “build and maintain our community together and make our brothers’ and sisters’ problems our problems, and to solve them together“. That is what this very blog has been based upon.
The greatest compliment that I receive from the infertility community is in regards to my transparency. I say what you want to say but are too shy/afraid/embarrassed to. I rant and rave when you can’t, and I try my best to let it all, (or most of it), hang out. This is what drove me to start this blog, and later the organization.
Many have called me flighty or unrealistic for it, but from the time I was a very young girl, I have always believed that people would treat one another better if they only took the time to see where the other person was coming from. That if we were all as honest as we could be, we would have no way to hate or mistreat because we’d get to the bottom of what is making us tick. I was always the kid asking bullies why they were bullying me, or the person in the clique who would say, “hey guys, cut it out, she has feelings too”. It’s just who I am.
Actually, it’s who my grandmother made me to be. When I think of this principle today, I think of her, actually, as she’s been on my mind since my aunt gave us restored photos of her for Christmas. My grandmother was a lover of service and a believer in collective work and responsibility.
My grandmother at 17! Ain't she purrrty?!
Her home was open, which is very much a part of where I get my philosophy on how adoption is a relative term. If you needed a mother, aunt, sister, etc., she was that. She was always willing to pick up a cause, and her own issues didn’t really take up much space in her head. Getting breast cancer, made her an advocate for breast cancer awareness and support. Though she died of complications from that cancer on my birthday, fifteen years ago, I can remember that even as she was sick, she couldn’t help but care for other people who had less of a support system or who were just in need of someone to talk to.
She was a housewife by all accounts, but she used that to her advantage, often using me as her legs and hands to pick up donations for others, or to drop off gifts to sick and shut-ins. With that example, I had no choice but to learn how to serve and make others feel comfortable even in their ailments.
Because of her, I actually have a low tolerance for people who complain but DON’T serve or cause change. I can’t help it. From what she taught me, I find that every disparity we think we have, is an opportunity to encourage someone else. Every trial is a testimony in disguise.
The issues of the world are MY issues because I’m a part of this world. On a smaller scale, it is what makes me such a big part of the infertility community. To know how I feel to see that period every month, or to hear that same wretched report from my doctor, or to feel the way I do as a wife or daughter, I cannot help but to think of how YOU feel. I can’t help but to want to help YOU find your voice. I can’t help but to want to HELP.
Your problems are my problems. Through this blog, and the connections I’m allowed to make because of it, I pray that God allows me the opportunity to help you solve some of yours. And by what we both learn, I pray we are also given the opportunity to help our younger sisters and brothers so that they don’t have to start from scratch.
Because of this, I work my hardest to never censor myself here. I work hard to make sure that you feel safe here. I will continue to work hard to make sure that you have a place to sound off. And I hope that through my example, you do the same for someone else. It’s about ALL of us. Sometimes, it takes a Village to MAKE a child just as much as it does to RAISE one.
I know this post went a bit more serious than I’d originally planned, or than you expected, but the point of it all is that I hope you find your own ways to relate to the principle of Ujima! If you blog about something dear to you that you wish to share, you’re doing it. If you speak up to someone who needs to know that what they’re going through is okay because you’ve been there, you’re doing it! I’m already proud of you, feel free to share.
This book emotionally drained me.
Yet, I couldn’t bear to put it down.
Yes, those are note tabs. I’m a nerd.
I first heard about this book from my ChocolateBrides family. So many of the ladies were adding it to their reading lists, that I had to investigate. Once I saw the subject matter, how one black woman’s cells became the nucleus of modern medicine without her knowledge, I couldn’t contain my excitement. I went quickly to reserve it at my local library.
Ms. Skloot did an excellent job of nailing the black-speak given by Henrietta’s family. I was equally gratified with her ability to provide just enough back-story to engage us in not only what her cells became, but who Henrietta was. There were times very early in the book that I found myself weeping for this woman, whose story, though I’d never heard it before, was somehow familiar to me. I was infatuated with the world surrounding HeLa, the name given to Henrietta’s cells. Cells that eventually were used to develop vaccines and medicines for cervical cancer and HPV, flown into space, and blown up in atom bombs. I would encourage anyone with a passion for good story, medicine, and a trip down a rabbit hole, to visit the library and check this book out. I was severely impressed.
Aside from the book itself, and the significance of Henrietta Lacks as a person, this story provided a great springboard into my philosophies on African Americans and medical professionals. While the issue of infertility was only discussed briefly in this book, reproductive health was a huge factor as Henrietta’s initial condition was cervical cancer, most likely caused by HPV. The fear and confusion created by a lack of medical literacy is profound in this tale, and is something I am frequently ranting about.
In 1951, when Mrs. Henrietta Lacks was diagnosed with cervical cancer, she began treatments at Johns Hopkins. I was taken aback to read that doctors had not informed her of the infertility those treatments would leave her with. Quite similar to the ignorance exhibited by some today in regards to cancer treatments and fertility, Henrietta had no idea the two were related. Ms. Skloot quoted this note by Dr. Richard TeLinde, however, the very doctor who did not inform Henrietta:
“The psychic affect of hysterectomy, especially on the young, is considerable,[…] it is well to present these facts to such an individual and give her ample time to digest them”
This gave me pause, because I’m often confused at how some people are understanding to the emotional feeling women experience when faced with hysterectomy, yet somehow unsympathetic to those dealing with infertility. Aren’t the feelings of inadequacy and “less than a woman”-ness, equal in the two?
Another statement that Rebecca made, which floored me because it was so closely related to what I’ve been telling people myself, was that eventhough Henrietta disagreed with her doctor’s prognosis about her recovery, it is quite probable that she did not question him. Patients believed what doctors said…”Especially black patients in public wards”, she writes. And the fear was passed down, as Henrietta’s husband and sons were wary to visit doctors in their own later years, in spite of gangrene and necessary angioplasty. The fear that doctors will do what they wish, without asking, or that they won’t understand what is being said to them, is a fear that I’m sure the Lacks share with thousands of other African American families. Some, right in Baltimore where the Lacks reside.
In an eye-opening few paragraphs, Ms. Skloot explains the origins of these fears as she recounts the tales slaves were once told of “night doctors”. To thwart possible runaways, slaves were told stories of night doctors in sheets who would snatch black people to infect them with disease or experiment on them. These stories provided the preamble to the Ku Klux Klan’s use of similar costumes. While these were “ghost stories”, some were actually true, and therefore solidified the fears that many blacks, especially those who lived near hospitals, had about medicine and doctors.
As the idea of cells and cloning becomes the focus of the book, it brought to my attention the necessity of medical literacy once again in the infertility community. To try and understand cloning, Henrietta’s daughter Deborah watched a movie called The Clone about an infertility doctor who misuses harvested embryos. So many of these movies and stories of science-fiction cast a negative light on reproductive technology. If we better understood what the terminology meant, and how the different procedures worked, we could lessen the ignorance and bias.
Perhaps the most heartbreaking issue of this book, was the way this family, for what they’ve given to medicine, had very little medical care of their own. For all of the money made by doctors and pharmaceutical manufacturers, it would have been nice for these people to at least be given free medical care…without fear of being further tested on as the family of HeLa. I felt connected to them and angry for them, as the book ended.
In all, reading this story relit my passion about making people aware of the effects medical literacy have on care and treatment. Knowing what is happening to or for you, as well as knowing the protocol for objection or second-opinion, is something we can not take for granted. Along with that, our reproductive health awareness MUST increase. For Henrietta Lacks to be given sexually transmitted diseases in 1950 that led to her cancer and eventual death, makes it all the more ridiculous for someone in 2010 to endure the same fate. We should know what our reproductive health means, and how to maintain it. If not for our fertility, then for our very lives.
I rate The Immortal Life:
Gourmet Omelet Worthy 5/5 +1: Informative, Well-Written, Engaging, Well-Researched, Health-Conscious, and Passionate