Monday Wisdom: On Clinical Research and Henrietta Lacks

lacks

I often entertain the idea of becoming a doctor.

After becoming a mother at age 20, I (and dare I say even my family) doubted that I would ever finish college and medical school for a single mother was totally out of the question. However, I have worked in the medical field for over 10 years – in mental health, outpatient surgery, and clinical research. My time as a Clinical Research Coordinator strongly resonated with me as I read Rebecca Skloot’s The Immortal Life of Henrietta Lacks.

Oh my goodness. I had planned to write this blog post months ago and the time has constantly dragged because I honestly could not pull myself together. Never, have I read a book that shook me and had me question everything I knew about myself and more importantly my career in healthcare. THAT IS INDEED THE MARK OF A GOOD BOOK!

SOME BACKGROUND:

A few years ago, I interviewed for a Clinical Research Coordinator position at a local hospital. When I was in front of the PI (Primary Investigator), I was told that I was brought in specifically to recruit African-Americans. For one reason or the other, they were having a hard time recruiting African-Americans and the money they would receive to continue to research was contingent upon recruiting more African-American (males specifically).

Now I knew the history of Tuskegee, read all of the issues regarding vulnerable populations research, and just knew of the distrust involved in clinical research. Working in medical trials, the adverse events (side effects) of the drugs could be unbearable and deadly. In one trial I worked on, most of our patients were already deadly and the study drug would, at best, buy the patients another month or two but the potential side effects would make those extra months of life 10,000 leagues past miserable.

So as I sat across from the interviewer who singled me out due to my blackness and ability to recruit blacks. I was flabbergasted! The money was nice and the hospital would bring a certain level of resume credentials but I hurt because I didn’t want to used to lure in black men. No!

As I read the book, I found myself going through all those emotions again and dredging up some new ones. For example, when I read how staff just NEGLECTED to tell Henrietta and her family, what they were doing with her cells, I felt ill. I have been in the icky situation with doctors pushing me to drive up subject numbers and to recruit at all costs and watching if I become to “overly explain-y” or made things sound too horrible when explaining the research project. We had numbers to meet and research to conduct. Reading Skloot’s work did not surprise me because I have worked with many doctors like the John Hopkins doctors. I am saddened that there are still many like them in 2015.

Earlier this year, after a 2 year break from Clinical Research where it literally felt like recovering from a bad breakup, I interviewed for another position. As I walked through the hospital and felt how familiar it would all be, a sadness washed over me. While I know that future generations would benefit from any research finds, I still find that there are some doctors and nurses and medical staff, that are still very much like Henrietta’s. How can I reconcile myself with that?

Skloot’s book changed me because it reenergized my passion for health. While I may not be treating patients, I can teach students how to properly conduct research; I can educate the public on what to look for when approached for a clinical trial or any type of research.

My writing has also been re-energized. I want to find the best ways to tell a good, honest story. Because in the end, the story is what matters.

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A Life Defining Break

Gee, has it really been since February!

All I can do is apologize and promise to try to do better (fingers crossed) with posting in the future.

I have been through many transitions since February. 9 to 5 job changes, side hustle changes, and just overall craziness with my life. In the midst of this I just honestly lost my mojo to write.

I think this time off was actually good for me. It forced me to take a break and reevaluate my own life. My life had actually gotten a little routine and frankly a little stale.

I am a young, married mother and have found that I had become more defined by my family (hubby and kids) and kind of lost touch with myself. Thus, when the opportunity arose to put back on my side hustle consulting hat, positivity resulted.

These past few weeks have seen me dress a little cuter, walk a little bit more confidently, and maybe kind of determine a direction for where I want to see my life go.

Have you ever had an eye-opening (and much-needed) break? Discuss it in the comments below.

Image

In 2009 I lost my hair.
Due to a beautiful combination of stress and medical issues, my hair (what the old folks called my crowning glory) began to fall out of my head.

I tried to hang on to it. I cut it short and even shaved half in the back. Then one night, I looked at myself in the mirror and realized how ridiculous it was to hold on to hair – and I cut it off.

From that point on, my hair has grown in its puffy, natural state. I have grown to love my hair but others have never fully been on this journey with me. I have had people ask, “Why don’t you just wear a wig?” Or, “Was your husband okay with you cutting all your hair off and wearing it like that?”

People can be kind of rude.

Case in point, recently I decided to get my hair pressed. Quick back-story: My long time stylist died last year and I haven’t had a good trim since then (man oh man the split ends!!!). So I found a nice stylist who straightened my hair and my world imploded.

Comments at work and from family included:
*You need to keep your hair like that.
*I’m glad you finally combed your hair.
*Wow!

I’m not really good with compliments in general – I’m really not an attention type person (if that makes sense). Also, I’m terrible with the compliments that served to build me up then beat me down – you know the double-edged compliment. This really had me in a bad place. The reaction was like “my gosh, it pained us to have to look at you but now – who knew you could actually look good!”

Image can shatter our self-worth and wrongly overshadows (in my opinion) a person’s work. This past week, I have busted my butt on several projects, saving the day like a superhero but instead of kudos for the excellent work, I received continuous “compliments” about this shocking hair transformation.

People get a grip!

My prime comment for people this week was that I love my natural hair, in all its states. Please do not subject me and other natural women to your bias. I actually love myself and I hope you love yourself too. This is the message I hammered in to my kids this week as they straightened their hair. I told them to expect overreacting from jerks but to take it in stride because when it really matters, their mom and dad tell them they are beautiful everyday.

Writing Question:
How does your main character (or your secondary character’s image) shape their outlook on life. Does society view them in a certain way? How do you shape this in the narrative?

Complacency

Have you become complacent?

So many times in life, we get stuck in a continuous loop. This loop may consist of continuously repeating the same mistakes, same habits, same dreariness.

What has to happen to shake your complacency?

For myself, I find myself willing to take risks when I have been made ANGRY. It’s basically coming into a job and not getting the promotion for the thousandth time, coming home and kids are not being kind, or volunteering my time and ultimately feeling taken advantage of. You remain complacent in these situations for a while – like these are normal expected events. However, maybe it’s a bad day where you got soaked on the way to work, you left your lunch, and then you got a horrible phone call. In this instance, the situation in which you remained complacent rubs you the wrong way and BAM, you are ready for a change.

As writing often time mirrors our life, it is understandable that your writing can become complacent. Maybe all your stories are starting to sound the same, or you’ve settled on a certain routine (that maybe has never really worked for you). The question to ask yourself is what has to happen that will allow you to step outside of the box.

How can we shake things up and become a little non-complacent in 2015?

Giants

In life, we are bound to face obstacles.

We may face naysayers in our personal life, crazy coworkers, or even family members that do not have our best interest at heart. What I believe is a true sign of your personal character is how you deal with the giants in your life.

As a child who was relentlessly bullied, I admit to shriveling and allowing myself to constantly get kicked. Around my junior year of high school, I met a new set of friends who showed me that it was time to stand up for myself and allow mean words to roll off my back. And there were a lot of mean words!

However, I took the mean words and used it to infuse myself with anger and strength. I would tell myself that “you will overcome this and show them all by being more fabulous than they could ever imagine.”

When writing your characters, think about how they deal with the giants in their life. How do the obstacles your characters face, shape their identity and their outlook on life? Once you map this out, it is sure to enhance your character development.

Amping Up

Well, I got up and stretched.

I have been wanting to do this for month and actually started off early 2014 with this morning ritual of light stretching and a little yoga. It felt good to stretch this morning. I feel like it opened my mind and body up for the day.

Although, I did not have time for editing this morning (late again!), I have always felt that I am an evening or even a lunchtime writer. I remain undeterred and have set my goals for January:

1.) Stretch every morning.

2.) Finish editing/revisions by January 30.

3.) Try to write something everyday. (I’m not giving myself a word count goal).

How are you “amping up” in January?

2014: Year in Review

2014 was a year of personal and professional growth for me.

I lost people I loved this year, dealt with illness within my family, and had some shakeups that overall I feel helped me define myself as a person. I have always prided myself on knowing WHO I AM but this year really made me meditate on this.

Major 2014 milestones included:

1. Making a year’s worth of revisions to Cycles. (This book is going to be awesome!)

2. Graduating with my MPH.

3. Changing jobs.

4. Reaching over 100 followers on the blog:)

5. Going on my first beach vacation! (seriously how had this not happened before)

When ever I look back on my life, I look for growth. Change is apart of life and I strive to get better with every breath I take. What were your highlights in 2014 and what are you looking forward to in 2015. Share below!

Willful Blindness

What do you willingly ignore?

I’m sure you have all been in the situation at work or in your daily lives where you see something happen – something that is detrimental to somebody – and you just keep moving with your life because you don’t want to cause a stir.

My youngest memory of this happening is as a high school student. I was living in an apartment with my mom and sister and the woman in the apartment above us was being abused. One evening when I was home, she let out an earth shattering scream but all of the apartment residents seemed afraid to act (I mean I literally saw people in the hall looking in that direction).  I went to call the police but was stopped by my own mother. At the time, I was perturbed but later found out that it was fear that led my mother’s action. We were women, in the apartment downstairs all alone. My mother had a valid fear that the husband could try to retaliate against us. Thus, my mother went about her cleaning choosing to ignore that anything was happening upstairs. To this day, this incident still saddens and haunts me.

I first encountered this term “willful blindness” via Margaret Heffernan and her TED talk on the subject. One of the examples that she used was the environmental case in Libby Montana. How many people saw residents consistently sick and dying young but chose to look  the other way? What precipated these actions? How does this type of blindness shape our everday lives?

Now that I’ve unloaded this HEAVY message, what does this have to do with writing? Everything! Listening to this topic has given me another thing to key in on with my characters. For my SciFi book, there is a dystopia element which of course leads to some governmental situations. My new question is, “what is this willful blindness that characters have let seep in to make this new government the status quo?” What have people ignored and for how long?

When writing dystopia, I think this is a pivotal question that should be considered. If you are writing something in this genre, what are other questions regarding dystopia that you think authors neglect or share your own instances of willful blindness in the comments below.

Looking Ahead

NanoWrimo is over. Do not get hung up on whether you “won” but instead take the time to celebrate the effort.

For me, November’s event was about adding fresh words and perspective to an existing work. It was also about shaking off my non-writing funk and jumping back on the writing/editing horse. Like school, writing is one of those things, that can be kind of hard to focus on when dealing with the daily hustle and bustle of work and family life. NanoWrimo provided the opportunity for me to reinvigorate my passion for writing words.

I hope this same passion was reawakened in you.

Looking ahead, my new goal is to have revision for this book done by January 1st. Yes, I am solidifying a date in hopes it will help me from dragging along.

Things I learned from NanoWrimo this year included:
1. Revisions done in different locations can offer a needed boost.
2. Writing partners are key to my motivation.
3. I have so many ideas and stories to share, that I really want to develop a better way to manage all the crazy in my head:)

What did you learn from Nano?

NanoWrimo: 2014 Inspiration

So I, like many of my writing friends, am taking part in National Novel Writing Month (NanoWrimo) this year. I have participated since 2008 and actually won in 2012.

This year, I am revising, rewriting, and rebuilding a novel that I started in February 2013. I have a had an interesting journey with this novel. It’s a NASciFi piece that I finished as part of a Nano-like competition. It was the first book I fast drafted and completed in a month. It has been through several revisions, was the first book I outlined, and is a book with a series already outlined:)

My big goal with getting involved with NanoWrimo this year was about latching on to inspiration. I really want to latch on to this book, retool it and push it out in the world because I think it ROCKS!

So when seeking inspiration to getting my writing juices flowing, I look to the author of The Lunar Chronicles – Marissa Meyer.

Marissa Meyer began my favorite book series as a nano book! Read about her excellent Nanowrimo journey here.

My biggest take away from her story is that most of what she wrote for The Lunar Chronicles had to be scrapped but that writing all those words served as a great road map.

As I am working on yet another set of revisions for Cycles, I am encouraged thinking of the long journeys writers take. It takes many revisions to get to publication and I am excited to be on this journey.