The Immortal Life of Henrietta Lacks

For a few months now, I have been reading rather hefty books about biology or consciousness, especially books written by Richard Dawkins and Daniel Dennett. One day on NPR I heard a discussion about The Immortal Life of Henrietta Lacks by Rebecca Skloot. I was intrigued, so I bought the book.

It's a short book, not even 300 pages, but within those pages is a beautifully rendered biography of an American family coupled with a fascinating description of how scientific research works.

Henrietta Lacks was a very poor African American woman, born in Virginia and living in Baltimore. Because she and her husband had so little money, they could only go to Johns Hopkins hospital, where Henrietta Lacks was diagnosed with cervical cancer. This was in the early 1950s, before the Civil Rights movement, before doctors knew that much about how to treat cancers. There are graphic descriptions of her treatment. Although horrific, she was actually given the best care for that time period. In spite of the care she did receive, Henrietta died.

During the process of her treatment, however, a young doctor, George Gey (pronounced Guy), collected some of her cancer cells to use in his quest for attempting to grow cells in a culture medium.

This was a quest by many researchers of the day, and a quest that could be compared with the quest for the Holy Grail. Not much was known about which culture fed the cells best, or about what conditions the cells needed in order to continue living for an extended length of time. Usually cells would divide and multiply for a short time, only to stop and then die. Henrietta's cells, for some inexplicable reason, not only lived, but thrived. They thrived in almost any condition. Since that time, her cells, labeled HeLa and still very much alive, have been sent into space for studies on space travel, have been used in the discovery of DNA, have helped to find the nature of viruses and how they attach themselves to cells, and countless other research discoveries.

But that is only one small part of the story. Henrietta left behind a husband and five children, all of them haunted by the death of their wife and mother, and later hounded by doctors, reporters and con artists who wanted to either study the entire family as a research project, or to "cash in" on Henrietta's legacy. Included are side bars of social injustice, racial fear, and even Deafness.

The book does a beautiful job of blending scientific research with the personal lives affected. Lack of education, but more importantly, lack of understanding on every side, caused a tragic storm that lasted more than 40 years. The Lacks family was literally blown apart.

And yet, the book is also about redemption and enlightenment. It is the first non-fiction book I've ever read that actually made me laugh, cry and simply delight in awe. By focusing on this one family, Skloot manages to give a vivid picture of twentieth century America, its triumph and its shame. It's one of the most poignant and inspiring books I've ever read.

All I can say is: Thank you, Henrietta.

Good Days, Bad Days

Today was a good day for my mom. She was awake and alert and making jokes with the other residents at Heritage Square. The other day, however, I walked in to find her sound asleep in her chair with her nebulizer in her lap, the machine running fast and furious. I turned it off and woke her up--well, tried to wake her up. She was really out of it. So much so, that today she had no recollection of my visit at all from last week.

It's not easy watching a parent growing old. With my dad it was a little different, because he had Alzheimer's. Regardless of how difficult it is to live with an Alzheimer's patient, there is still an expectation, or anticipation of what is to come. He began showing signs in his late seventies. By the time he was 84, he was basically incapacitated. Not that Alzheimer's is an easy thing to deal with. For me, emotionally, it was gut-wrenchingly hard. I had a very close connection with my dad. Watching my dad slip away in tiny increments was one of the hardest things for me to deal with. At that time I lived 200 miles away and I was going through menopause. It made for a perfect storm of guilt, frustration, depression and just downright sadness. I'm still very apologetic to my daughter, who was starting college just at that time. I completely lost my mind with grief and anxiety and was not much support for her.

Be that as it may, my dad had a certifiable disease, something that we could all point to and say: "Ah, this is why THAT happened..." By the time my dad died, my entire family breathed a sigh of relief. That's not because we wanted my dad dead. Not in the least. But Alzheimer's is one of those diseases that affects the whole family. It was a strain on my sister and me, and certainly a strain on my mom, who tried very hard to be the primary caretaker for him. I am convinced that most of my mother's physical problems stem directly from trying to take care of my dad for so long. He lived six or seven years with Alzheimer's; the last three years he was unable to dress himself or feed himself. My mother took care of his every need as best as she could. Even when we moved them both to assisted living, she got breakfast for him, fed him, and dressed him herself.

My sister and I were both so busy working and taking care of our own families to help that much. During that time period, Rosemary lived very close to where they lived, so that she could pop in for a visit almost every day. I, on the other hand, lived in Austin. I was teaching 180 students at a school that simply didn't believe teachers needed any time off. My husband was an alcoholic and battling his own demons of bi-polar disorder. Like I said, it was a perfect storm of crazy for me. I was paralyzed emotionally. Not a day goes by when I don't have to stop and try to forgive myself for the grief. I was in no position to offer much help to my mom then. At the same time, I continually have to battle that little voice that gnaws away at me inside that says "You should have been there. You could have done more..."

Ah, but that's all water under a very old bridge.

Now I am less than 30 minutes away from my mom. I do go by and see her every couple of days. But the grief doesn't get any smaller. I watch my mom's body fall apart. Her mind is still sharp. But she's depressed and lonely and most of the time in pain. She has osteo-arthritis and spondylitis. She has frequent recurrent bouts of gout and cellulitis. For a while she was mis-diagnosed with Type II diabetes. Her doctor accidentally ordered too much insulin for her, and twice she almost died. Thank goodness, he came to his senses.

And here I am now. I am fiercely protective of my mother. Anyone can attest to the fact that I advocate on her behalf at any opportunity, so much so that some of my co-workers in the interpreting field start to get a little uneasy when I open my mouth.

But part of my temerity comes from the fact that both Mother and Daddy were and are Deaf. Having Deaf parents comes with its own set of issues, more than I care to deal with in this blog.

Suffice it to say that I grew up as a caretaker of sorts. I had to advocate for my parents at a very young age, and there were many unscrupulous people who took advantage of me and of my parents, and I tend to be a little on the protective side.

The overriding emotion I have now, though, is that I don't want to repeat what happened with my dad all over again. I was so hoping that my mom could live out her years a little happier than she is now, a little healthier than she is now. She was always such a lively and vivacious person. She loved to go places and do things. She used to really love life.

That's why now when I visit, I am satisfied with a smile and a conversation. Today, she was smiling, asking questions and involved in conversation. Today was a good day.