MLK DAY

So, it’s MLK Day. What are you going to do?

First off, let’s ask the question “Why should you do anything?” After all, it’s been a long year (17 days) already with numerous snow storms (no matter where in the country you live!), and today seems like the best day to sleep in, stay inside, and keep the pajamas on until morning.

And, as the Director of Intercultural Affairs, an office that lives by the mission of educating for social justice, challenging others beyond their own comfort zone, and being a social reminder of caring for others … that’s exactly what I’m doing today.

Props to my staff members who are working today, though. One is facilitating move-in for the remaining college students who stayed home to watch the game before returning back to school; The other is hosting a reflective exercise called Community Build which challenges participants to see the shared needs within a community.

Me? I’m here. I’m in my pajamas. And, with 20 degrees outside, slick ice and snow, and three small children, I’m going to stay here.

As a working mother who has no “cleaning crew” or “live-in nanny” or even children old enough to use cleaning solutions in the house, I use days off as a great time to catch up on household chores that will never get done during the work week. So, yes, as the director of intercultural affairs on MLK day, I will be doing 2 loads of laundry, getting meals ready for the week, and attempting to clean and vacuum my house in my pajamas.

But, be not fooled.

MLK Day is significant for me. It’s the Rev. Dr. Martin Luther King, Jr.’s work that most inspires me — not just his vision for human equality, but his passion for justice, peace, and shared love. I also use this day as a time to remember that Dr. King was not just about the feel good sentiments that are emphasized about his life. Be not fooled. Dr. King was incredible because of his unrelenting commitment, drive and action to call people — our country — out on its most horrific ideas and actions.

If you are inspired to leave the house today and engage in your community, nearly every single town (or at least a town nearby) hosts a Day of Service. Please, please open your local paper or go online to your town’s site and check out what has been arranged. If not a Day of Service, many organizations (churches, mostly) are hosting Teach Ins.

If, like me, you are unable to go out (not unwilling…but unable), here are a few ideas for the at-home version:

1. Get online and go to the King Center (www.thekingcenter.org) to read some of Dr. King’s sermons, teachings and writings.

2. Read this neat story from Clarence B. Jones, a friend and speechwriter for Dr. King, about his recollection of the “I Have a Dream” speech.

3. Spend 17 minutes and watch the original speech by Dr. King.

4. Flip through the photo images of Dr. King during the Civil Rights Movement

5. Crafty? Have your children trace and cut out paper in the shape of their open hand. Ask them “How might we be able to lend a helping hand each day?” Depending on their age, they might mention how they might help you — make their beds, clean up their toys, put their clothes away. Encourage them to then see how they might help others outside of your home — talking to a new friend at school, not wasting water, recycling paper. Let them color the hands in, post them in your house, and share with them that Dr. King believed that we are all responsible for lending a hand to others.

6. Want to know a bit more about what MLK believed and how timely it is for us now? Check out (an older) video from Ill Doctrine about 10 Other Things MLK Said. One of my favorites!

Do what you can. While some folks go all out on this day to engage in community service, some of us cannot.

MLK Day. It’s not a day off. It’s a day on.

JUDGING THE BOOK BY ITS COVER

I knew it right away. The title triggered me in way that made me want to run and hide, and read it at the same time. So, I guess for every PR firm, the ideal had occurred.

 

 

I sort of joke with my parents when I see them interact with my children, their grandchildren. When they come to the door, my parents immediately hug my children, tell them how much they love them, how much they have missed them since the last 24 hours when they saw them, and ask them what they’d like to eat/drink/play with/have.

 

“See,” I say to my daughter who secretly ‘wishes she was Grandma’s daughter’. “It’s so much better to be the grandchild than the daughter. When I was growing up, Grandma never told me she loved me.”

 

My kids don’t believe me.

 

They absolutely cannot believe that a world exists where their grandparents — my parents — didn’t explicitly say they loved me or my siblings. They don’t believe that we never held hands with my parents, never received a hug or a “good job”, and never felt like we were good enough.

 

They will never know the grandparents — my parents — who told us we were too fat, not smart enough, or that we were too lazy. They will never know the people who said that a 98% on a test included a 2% failure. They will never know the people who stated that if we had 20 minutes to watch television, then we had 2 hours to practice piano, violin, or study more.

 

 

So, when I saw the title in the WSJ that “Chinese Mothers are Superior”, I cringed. I knew exactly what it would be. It would be in praise of discipline, structure, and intentional activity. It would criticize the praising of children, the emphasis on play and imagination, and the over affection that many Western parents show by calling their children “little buddy” or “pal” or giving them a “good job” at every mediocre event.

 

I knew I would be faced with my own upbringing by Asian immigrants and my knowledge of Western child development.

 

In simply reading the excerpt from the WSJ, I knew that each of Chua’s examples would be pulled from my own life. I also knew that my children would never be able to relate to her stories. For, after all, I am not a Superior Chinese Mother.

 

I am, however, to borrow from my friend Delia, a “kick ass Asian American parent.”

 

My children — ages 7, 4 and 1 — are disciplined. They have been taught to respect their elders and their peers. They have not been allowed to give up in any situation, even if they do not like the activity. We have signed them up for soccer, karate, gymnastics, and even new schools. And, despite their early protests at each one of these events, I have never let them quit. I’ve emphasized lessons in perseverance and seeking a positive lesson out of a negative experience.

 

But, they have also been hugged, told they were worth love, and encouraged. They have been told that 98% is awesome and that they are as interesting — if not more interesting — than some of my friends.

 

They see me experience emotions: crying at commercials, laughing at movies, and yelling at the television. They hear me dialogue with my husband, sometimes agreeing but mostly disagreeing. But, most importantly, they have been encouraged to do the same. They have argued with me, told me they were upset, and demonstrated ranges of joy.

 

And, every morning and every night, no matter what happens, they are hugged and kissed.

 

Of course, once the WSJ article made its way sufficiently around the internet, people quickly came to Chua’s defense. Not in defense of what was written, but in defense of what was not written. She told of the lessons that were learned — the similar lessons that I, too, learned as a parent — of acknowledging the way we were raised and moving forward.

 

Though the air has been cleared, one of the greatest things the mis-representation of the Chua excerpt has raised is awareness of the pressures of the model minority myth. Asian American youth have one of the highest suicide rates, and many adults have come out to say that they, too, had considered the pressures of growing up under unrelenting expectations.

 

 

Enough conversations (both online and in person) have occurred about the pain and consequences of the model minority expectations. And, thankfully, the article helped to spark the conversation and keep it on the forefront of our awareness.

CALLING OUT

For me, the most important exercises in being an ally do not rest in the times when I’ve been successful, stood up for others, or challenged inequity. For me, being an ally means constantly revisiting the times when I’ve failed to be an ally. Some of those times are due to ignorance — they happened in my pre-awareness phase. Some of those times are due to inexperience — not sure how to address something that I know is wrong. Oftentimes, they are due to inability — my lack of courage and strength to stand up for what is right.

I’m an ally-purist. I believe that being an ally is more than just putting up a sticker on your office door. It’s more than a rainbow keychain. It’s more than saying you have a _______ friend (insert Black, Asian, Gay, DisAbled, etc) or that your ______ (same inserts) thinks you’re cool. Being an ally means acting and reacting; moving forward and reflecting backward; and stepping up when you’ve failed. Being an ally means calling more attention to your failures than your successes. So, I’m coming clean here and calling out a few of the many, many times when I’ve failed to be an ally. Reflecting back doesn’t mean wallowing in the past. Rather, it means learning from the past so that we don’t repeat it.

My senior year in college, I went through the “trying to be down” phase. I was the 21 year old who called things ghetto. I’m sure at age 21 I referred to things as gay, lame, or crazy. I was too ignorant to realize my own ignorance. And, at age 21, I was supposed to be an adult. In a few months after graduation, I was attending a major urban university and beginning my internship in a very openly gay and supportive school. Despite having attended a diverse undergraduate college and being somewhat involved in the multicultural organizations, I was ignorant. My years spent in a predominantly Irish/Italian Catholic town — one in which race, ethnicity, social justice, equality was never brought up — kept me sheltered from the rest of the world. Heck, it kept me sheltered from the bustling city just miles from my own doorstep. I grew up with negative stereotypes about Blacks, Latinos, people with disabilities, individuals who identified as gay, the poor, the formally uneducated, and even negative stereotypes about my own Asian people. My earlier college years never challenged me on those notions, and I continued to hold on to them through my senior year in college.

I remember — very well — sitting at a dining hall table with a number of Black and African American women who I worked with in my last year of college. I remember trying to be cool. I threw around racial slurs, racial stereotypes, and hurtful remarks. At one point, a white woman who was sitting with us turned to me and said, “Liza. That’s enough.” I remember saying, “I’m just kidding. They know I’m just kidding!” I was too ignorant to even realize I had gone too far; instead, I blamed the group of women for “not being able to take a joke.” Yea, I was that girl…. Needless to say, those women never talked to me for the rest of the semester.

While I remember that day so well, I don’t remember the day I realized I was a total jerk. I remember having feelings of sadness, embarrassment, and shame. It wasn’t a particular program, moment, book or speaker who woke me up; rather, it was a progression of learning that made me realize what I had done back in 1997. In 2000, I had gone to a shopping mall to do some wedding shopping, and I saw one of the women who had sat at that original dining hall table. She approached me with a smile, surprised that we were seeing one another in this random shopping mall. We hugged, and she said, “It’s so good to see you!” I felt embarrassed. I wanted to say something at that moment — apologize for my rudeness, my ignorance, my stupidity. But, I couldn’t find the words. Our encounter was brief, and after she walked away, I began to cry. Though she didn’t seem angry or upset (and she could have chosen to walk by me and not say anything), I felt ashamed. In 2009, more than a decade from that first encounter, I got back in touch with this woman as well as with a few others who sat at that dining room table. I wrote them lengthy apologies for what I had done, what I had said, and what I had failed to learn back in 1997. None of the women said they remembered that day at the dining hall; I have never forgotten it. There was something very healing about asking for forgiveness. To acknowledge when I have failed as an ally, and especially as a newly reformed social justice practitioner, has been the most impactful exercise of my life.

Facebook has a funny way of challenging former behavior. Recently, a friend of mine from elementary school posted a photo of our 3rd grade class at the State House. Individuals tried to figure out who was who — the bad haircuts masked many of our former faces. Quickly, a number of friends who, much later in life came out as LGBT, began to talk about ways of knowing they were gay back in those photos. I began to reflect on the many students who still feel unsafe coming out as college students. I felt the need to call out my own behavior by apologizing for not creating an environment where my former 3rd grade classmates felt they could be who they authentically were back in school. They waited — for many reasons, I’m sure — until they reached adulthood to date partners of their same sex, marry, and start families.

One particular person — a man who I have known since 1st grade — has always stuck with me when I think of LGBT ally work. I remember sitting on the bus with him and watching school yard kids play “The Fag Test.” I remember this distinctly because I had refused to partake in it. Essentially, a classmate would take your hand, palm down, and begin to vigorously scratch the top of your hand. If your skin peeled off, leaving an awfully painful mark, you were NOT a “fag.” If you made the person stop before your skin peeled off, you were “a fag.” I didn’t want to take the test. I feared pain. I feared being called “a fag”, even though, truthfully, I had no idea what that word meant. I just knew it wasn’t good to not have the mark.

I lost track of that male friend, but had connected back with him through some other mutual friends much later in life. I remember someone telling me that he had finally come out of the closet. I made a snide remark (one I had learned from a college friend) that “D is so far in the closet, he has discovered Narnia.” I thought it was funny, clever, insightful. Never did I think, or own, that it could have been hurtful, offensive, ignorant. I see my friend now, in a loving relationship with a wonderful man and now the father of 2 beautiful boys. Though we all knew, somehow, that D was gay, even when we were little, it was never spoken about in our lives. I think of D whenever I fail as an ally to the gay community. I think of D whenever I fail to speak up against homophobic remarks, “funny” jokes, or witness the pain of a student still living an inauthentic self.

Allies don’t rest in the joy of a job well done. Allies continue to reflect on the ways in which we have failed to stand up for others, failed to speak up for ourselves and our identities, and failed to create space for dignity and respect. Though it hurts to reflect on those moments, those moments keep me grounded in what I am called to do — to serve a greater good, to serve a greater version of myself, and to serve a greater purpose on our planet.

In what ways have you reflected on past behavior that has shaped your current behavior?

Some great links

Hi friends and To Loosen readers,

You’ve probably noticed – I haven’t been blogging on here much. There are a few reasons for my brief race-hiatus — emotional fatigue, not enough time, discouragement — but the most compelling one is that I have had to focus a great deal on my health. I’ve made the decision to have a double mastectomy in the next few months, and so much of my reserve brain power has been allocated to wrapping my cells around cancer.

Yet, as with most things, race is not something I can put back into a corner for a later day, a sunny day, or another day. So, here are some of the best links I’ve been reading that ring true to me and my life.

I’ll be posting a few times in the next few days — feeling inspired for the first time in a while. So, stay tuned for those. In the meantime, here are some great pieces that I’ve read recently:

Keep Your Hands Off the Hair: ” This week we’re going to talk about hair. To touch — or not to touch, that is the question. And as far as I’m concerned the answer is nearly always, no.”

South Philly Asian High School Students Victims of Attack: “Another example of ways in which our school systems fail in protecting our children”

Learn More about the Health Care Bill: As the mother of a sick child, the friend of families who care for sick relatives, and as someone going through a body disfiguring surgery in a few months, I am passionate about the health care reform. I believe that Health Care is a right, not a privilege. Yet, it is a privilege I live with each and every day. I am thankful the President has moved forward with this bill, and I also know that a number of my friends are not thankful (and absolutely oppose this bill). I’m open to hearing all sides and “to loosening my mind.” In the next few weeks, I’ll be posting thoughts from my Liberal, Conservative, and Middle friends. In the meantime, here is a link to follow the plan straight from the source.

Can We Stop Using the Term “Ally”? Great point. Instead of being an “ally”, just be someone who does the right thing. Well stated. (hat tip to What Tami Said)

The Human Response

“I don’t see color; I just treat everyone as humans.”

I hear this statement all the time. I treat everyone as humans. While it is a perfectly appropriate response — after all, I’d prefer not to be treated like a dog, a pancake, a rug, a chair, an apple, etc. — it just doesn’t make sense to me. Responding that we should just treat everyone as humans often implies that “I treat everyone as just the same.”

Treating me like a human, on one hand, is comforting. I’m happy to know that you will treat me as a thinking, intelligent, moral, able, evolutionarily advanced creature on this planet.

However…

Treating me like a human also ignores all of the uniqueness that makes me who I am. After all, my identity has been shaped by all the unique experiences I have had. At the most general level, I am a mother, wife, and sister. On a slightly more defined level, I am young mother, a working-out-of-the-house wife, and a sister in a large family. On an even more defined level, I am a young mother of three, a working-out-of-the-house wife in an interracial marriage, and a sister in a large family affected by cancer. Each of these levels can be broken down even more. And, each of these levels and these experiences have shaped who I am. Simply treating me like everyone else doesn’t speak to the levels that impact how I see the world, how I make decisions, and how I approach situations.

The other day, I hosted a workshop for a group of  students. And, as expected, this topic came up again. In this context, though, a student asked about the issue of hyphenating the American identity. “Sometimes, people want to be American. But, then those same people say they want to be known as Asian-American or Chinese-American. Why can’t they just choose to be American?”

I asked the group to look around the room. In this room, at this particular college, I asked the group if they could safely assume that everyone here was from the same college. “Yes.” We agreed that everyone in that room was a college student. Now, if I asked the group to introduce themselves, it would be unlikely that anyone would start off their personal introduction with “My name is ___, and I am a XXXX student.” We don’t have to say we are “XXXX students” because it’s assumed given our location, the time of day, the way people look (average college aged in the room), etc. I then pointed out that there were 4 men in the room and 20 women in the room. I asked, “Is it safe to assume that there are situations in which you are treated differently at XXXX College because you identify as a man or a woman?” Students responded with examples of residence hall room/roommate assignments, bathrooms, single-sex sports teams, etc. While it is my hope that you are all treated equally in terms of encouragement for achievement, opportunities made available to you, classes you can get in to, leadership positions you can apply for, etc., the truth is that you experience some things differently based on how you identify your biological sex.

Now, I’m going to take the leap and assume there is more to know about you than just “you are a XXXX College student” and “you are male or female.” I’m also going to take the leap and assume you want to be known as just “the girl in the North Face jacket” or “the guy with the hat on.” There is probably more to you than just what you are wearing. I’m going to assume that you all have a first name, a last name, and maybe even a middle name. For some of you, your name is really important to you. If your name is “Jennifer” or “Matt” or “Lindsey” or “John”, I’m going to assume that you aren’t exactly the same as the other “Jennifer” or “Matt” or “Lindsey” or “John” in the room. In fact, if we were in a room full of people with those names, you might want to distinguish yourself by using your last name or a nickname. We begin to see how, yes, we all started out with something that we had in common — being XXXX College students — but that there was more to you than just that piece of information.

Let’s assume you are a XXXX College freshman. On the  campus or at a College event, you might choose to identify yourself as “Hi, I’m ____. I’m a freshman.” Simply saying you are a freshman means something here on our campus. Yet, say you went back to visit some teachers in your old high school. You are approached by a new teacher in your high school, and you introduce yourself as “Hi, I’m ____. I’m a freshman.” That context means something at that high school. The teacher might very well assume you are a freshman at that high school. It would be important for you to say, “Hi, I’m ____. I’m a freshman at XXXX College.” Or, maybe you wouldn’t even mention XXXX College. Maybe you would say, “Hi, I’m ____. I graduated from this high school in 2009.” You as a person haven’t changed just in your visit; but, the way you describe yourself has changed based on your surroundings and the context of your identity.

You are still treated like a human while visiting your high school, however your experiences and the way you identify yourself take on new meaning.

Now, let’s look at the experience of attending college. As students, you have chosen to go to college. Likely, you have a reason for going to college. At it’s most basic level, you must be assuming that there is something different about the experience of going to college vs not going to college. I’m also going to assume that you, in fact, believe that people who do go to college and people who do not go to college are humans. I would hope that all people — whether they go to college or not — should be treated as humans. And, yet, there is something different about your experience. Likely, if you were applying for a job, you’d want me to consider the fact that you went to college and that the other applicant did not go to college. You’re both humans, yet there is something different about your experiences. I’d even guess that you’d want me to treat your application different from the application of someone who did not go to college. I certainly would hire the best person for the job, and you’d probably want me to take into account that there is a benefit I get from you as a college graduate.

The list of examples and definitions can go on and on. At the heart of it is this: we should always treat one another with respect, courtesy, and as if we are intelligent and wise. No matter if you went to college, if you are male or female, if you are black or white, or if you are tall or short — we are united by the common bond of humanity. Yet, within our own identities, we have a diversity of experiences that have shaped who we are, decisions we make, and situations we encounter. To only treat one another as generic humans means we fail to see the other layers of who we are and who we have become. There is certainly nothing wrong with wanting to make the more important layers of our identity visible to others. And, there is nothing wrong with treating one another as if the layers they share have impacted who they are as people.

Treat me like a human who is made up of many layers. See what makes me different from you. See what makes me the same as you. And, together we can make our world a much more interesting place.

The Strength to Carry: One Mother’s Journey with Genetics

These past few days, I’ve been experiencing breast pain. While it may be just the normal ebb-and-flow of breastfeeding, any pain in my breasts makes me scared, anxious, and nervous. I was going to hold on to this essay for a while – not sure when I was going to release it. But, today, I’ve decided that 2010 will be the Year of My Mastectomy. So, during this season of giving thanks, demonstrating love, and seeking peace, here is my latest essay into my personal journey as a cancer mom, cancer sister, and a cancer pre-vivor. Thanks for reading! -Liza

“I don’t know how to tell you this, so I’m just going to say it.” Those words hung in the air like smoke in fog. Time sped up and stood still all at once. Slow motion met the click-click-click- quadruple fast-forward of my DVR menu. “Your daughter has cancer.”

I clutched the waist of my 2-year old daughter sitting still on my lap. I could feel my own heart racing through her tiny body, and I could feel her breath on my arm take the place of my own breathing. I wanted to scream and crawl in the fetal position, recalling just two short years ago when she was safe and protected in my round belly.

“Please do not give her anything to eat or drink,” stated the pediatric opthalmologist. “We may have to operate today. If her cancer is advanced, we’ll be removing her eye tonight.”

Within 24 hours, my daughter went from a carefree 2-year old in an Elmo shirt to a child with cancer. The 6-hour surgery to remove her eye freed her from the tumors that had destroyed her vision. Enduring six months of chemotherapy meant we could kill any stray cells that passed into her optic nerve, reducing her risk of cancer cells spreading to her brain. Once our lives settled into the routine of chemotherapy, hospitalizations, exams under anesthesia, and bi-weekly flushes of her port-a-cath, I obsessively combed through photos to find signs of leukoria – the tell tale white reflection in my child’s eye that would have alerted us to retinoblastoma. In the hundreds of photos taken between birth and her 2nd birthday, I only found a handful. But, those handful have tattooed themselves into my palm. The guilt stamped it’s place in my heart. The image of her a prisoner to IV lines burned in my brain.

“What did I do to make this happen?” I tortured myself with this thought every day. Once a skeptic of prayer, I found myself on my knees every night asking, begging, pleading with God to let me switch places with her. “Please, God, let me have cancer instead. Please, God, give me her tumors. Make me feel her pain of chemotherapy. Make me a prisoner of the pain. Just let her be a kid. I’ll do anything.”

While my daughter was going through treatment and recovery from enucleation, I became pregnant with our second child. My already lengthy prayer requests had included a new request: “Please, God, seriously this time! Please let this baby be healthy. Please don’t let this baby have cancer.” I was asking God this even though we had no confirmation that my first child’s retinoblastoma was related to genetics. Given that her retinoblastoma was unilateral — only in her right eye — her cells likely mutated with no specific direction from her DNA. But, we had not undergone genetic testing for her cancer, so we were unsure about the cause at that time.

My pregnancy was both a blessing and an emotional curse. While my growing belly was a welcome distraction to our hospital and doctor’s visits, I was consumed with the fear that my body had created the retinoblastoma in Joli. When pregnant with Joli, I was a healthy weight, ate all organic food, avoided caffeine, and got lots of sleep. My body was my temple. Now, with my second pregnancy and a sick child, most of my dinners consisted of leftover hospital food. Anxiety kept me awake at night and exhausted during the day. Caffeine was the only way I could make it through my 40-hour work week in a relatively stressful job. And, the first pregnancy and stress made every bit of food stick to my hips, thighs, and butt. My body was less like a temple and more like an empty cardboard container where “two all beef patties, special sauce, lettuce, cheese, pickles and onions on a sesame seed bun” once lived. Drive thru.

Shortly after I gave birth to a healthy 8lb 9oz baby, doctors checked my new infant’s eyes for any signs of tumors. Thankfully, she did not show any signs of retinal tumors at 3 weeks old. This baby child continued to have eye exams every 3-6 months for the first 2 years of her life since we did not have any confirmation of whether the original cancer was genetic in my family. Each time she went for an eye exam under anesthesia (done this way so that the retina specialist can examine a young child without having to struggle), we held our breath and prepared ourselves for the worst. I did this each time out of sheer protection against a surprise diagnosis. Now, at age 3, my younger daughter has been cleared of any risk of retinoblastoma and has graduated to once-a-year exams in the office.

Just after my older daughter had finished chemotherapy, and just when our lives were beginning to return to normal, my oldest sister, Mary, was diagnosed with a very aggressive breast cancer at age 36. Given our family history with breast cancer, her doctors asked if they could test her for the genetic marker — known as BRCA — for breast and ovarian cancer. Mary tested positive for the genetic deletion. However, regardless of the genetic outcome, Mary had already developed advanced stage cancer — the kind where you begin to plan for a life without her — and had aggressive chemotherapy, radiation, and then a bilateral mastectomy. My sister was already so immuno-compromised when she went through the very risky surgery of of a bilateral mastectomy. She needed to follow this protocol because the tumor in her breast was so large that they had to shrink the tumor before even trying to remove her breasts. It was at that point when my sister, Grace, decided to get tested for BRCA. At age 34, Grace had not been diagnosed with cancer, but she wanted to assess her risk of developing cancer. After all, having the BRCA gene meant that there would be a 80% chance of developing breast cancer and a 60% chance of developing ovarian cancer.

After working closely with a genetic counselor, Grace tested positive for BRCA gene. She decided that a prophylatic bilateral mastectomy — a procedure done to reduce the risk of cancer preventatively — was the route she wanted to take.

Having just put my daughter’s cancer battle behind us, I was reluctant to get tested. And, I was hoping to play my schoolyard odds with “Well, best 2 out of 3, right? I mean, 2 people already have it, so there’s no reason for me, the 3rd, to have it.” That was the fun side of me talking. The more angry side of me sounded like this, “No way, there is no way that I would test positive for BRCA. We’ve been through too much already. I’m pretty sure shit doesn’t hit the fan twice!”

Through peer pressure, or “sister pressure”, I went and met with a genetics counselor in Boston to gather some information about the process, about BRCA, and about my odds of having the gene. In October 2007, I walked down the very familiar hallways of the cancer treatment center that had become home to my family from August 2005-April 2006. I knew that the benefit of doing all of our testing in one place would be the ability to share information. We could share not only the information of the sisters, but we could also include my daughter’s cancer information if it ever became relevant to our own BRCA experience. And, so, I began my testing.

I sat across from a kind, caring, and friendly genetics counselor who reminded me of a childhood friend that I dearly loved. Arrogantly, I told her that she did not really need to go into all the details about cancer, BRCA, and genetics given my experience and my sisters’ obsession with all things BRCA. “Go ahead. I know all the statistics. I know that I have a chance of being BRCA+. I know that, if I do test positive, that a mastectomy would reduce my risk by about 80% and an oopherectomy — removal of my ovaries — would reduce my risk of ovarian cancer by around 60%. But, I’ll cross that bridge if I have to. For now, let’s just get some results.” With all that we went through with my daughter having cancer, I was confident that I would come up negative for BRCA. I figured God, destiny, faith, or the good natured order of the world would make it so.

Apparently, I was wrong. Yet, my prayers had been answered. Not my prayers to avoid being BRCA positive, but my prayers back in 2005 by my daughter’s bedside. Just a few weeks after I gave blood to my genetic counselor, my test came back. I, too, was BRCA positive. While I knew what the results meant for me, I felt a sickening pain for what the results meant for my kids. What is the likelihood that I have passed on the BRCA gene to my two girls.

What have I done? What did I just do to them? What kind of mother am I? I really didn’t care what I’d have to go through. After all, I just saw my oldest sister go through chemotherapy, radiation and a mastectomy. I watched as my other sister went through a preventative surgery to have her breasts removed. I wasn’t sure what I was going to do, though. All I could think about was my daughters. Particularly, my daughter who had just finished cancer treatments. Did I give her the genetic predisposition for both breast and ovarian cancer? Does the baby, too, carry this ticking time bomb of DNA?

I found ways to distract myself from obsessing about my genetic responsibility and my own physical responsibility. I began doing what any psychology major would have done — I intellectualized the process. Freud would be so proud. I began speaking more about retinoblastoma, participating in fundraising events, creating college workshops and presentations on the experiences of cancer and pre-cancer, and joining online groups for pre-vivors and even for young pre-vivors. I’ve dedicated blog entries about being BRCA, spoken publicly at work, followed up on all of my medical tests and baseline diagnostics, and have even talked at length with my sisters about their surgeries.

But, I have never seen my sisters and their mastectomy sites. I never touched their drainage tubes. And, the very thought of what their saline-and-sewn breasts must look like makes me queasy. I’m immensely proud of them for what they have endured, and yet I can’t bring myself to look at them.

In December 2009, my sister Grace called to tell me that she was celebrating her Mastectomy Anniversary. “That’s great, Grace! Happy One Year Anniversary!” I said with such pride. “It’s been two years, Liza. Two years,” she replied.

Shit. Two years? It’s been two years? That means that it’s actually been two years (and 2 months) since I first met with the genetics counselor and discovered I was BRCA positive. It’s been three years since the breast specialist and the gynecological oncologist both said to me, “We can schedule your surgery anytime. Any time soon.” The folks in those clinics don’t mess around. When they get confirmation that you are BRCA positive, they expect you to be in a paper thin johnny in the Recovery Room shortly thereafter.

***

In July 2008, after a year of baseline tests that determined I had not developed any cancer cells, I found out that we were going to be expecting our third child. I was filled with joy and excitement. And, I was even more excited when my cancer team called to set up my next appointment because I said, “Yeah, about that appointment. I can’t do any tests for a while because I’m pregnant.” Needless to say, they were less than thrilled. “You know that this means we won’t be able to monitor you closely for any cells, right, Liza?” Did I have to say, yea, kind of the point? Freud would not be so proud.

***

In October 2008, at a routine obestrics exam, my OB/GYN felt a solid lump at the 7 o’clock location of my right breast. “When you check your breasts, have you noticed this lump?” he asked. I heard myself say, “No, why? Do you feel something?” What I was thinking, though, was “You mean IF I check my breasts, right?”

“Feel here. Deep. Right here,” he said as he positioned three of my fingers in the 7 o’clock position near my right nipple. I pushed down where he had placed my hands and felt a pea sized lump deep within the tissue of my right breast. I felt my fingers leap off of my breast, and felt a grapefruit sized lump begin to form in my throat. Don’t cry. Don’t cry. Don’t cry, I kept telling myself. Breathe now.

“You should call your cancer team right away,” said my OB/GYN in a panic. “Can they see you right away?”

“Oh, yes. Yes, they can.”

***

I called my cancer team from the parking lot. And, sure enough, my appointment for a Fine Needle Aspiration was scheduled in 2 days.

***

Those two days were awful. I fought the urge to let my imagination run wild. I lost that battle. I also did something a person should never, ever do when in a stage of crisis: I Used Google. I searched for all types of outcomes regarding cancer and pregnancy, chemotherapy and first trimester, radiation and fetal development, mastectomies while expecting. Naturally, nothing positive came out of those late night searches. I’m pretty sure it would have been a good time to buy stock in Kleenex tissues, because I can only imagine how much of their product I used in 48 hours.

***

The day came for my Fine Needle Aspiration. I was scheduled for an FNA as well as a breast ultrasound. Whenever I speak to students studying Health Care Administration, I usually bring up this doctor’s appointment because it was one of the most nightmarish moments of my whole BRCA experience. Exposed, topless, and already emotionally unstable, I was subjected to a “well-meaning” doctor who decided to tell me that I was already delaying any survey of my condition because I got pregnant, that I really shouldn’t breastfeed after my baby is born so that I can start up my survey tests immediately after I gave birth. “After all,” she says,”I have seen too many women with advanced stage cancer because they decided to breastfeed and forgo their examinations. Breastfeeding doesn’t promote bonding. Breastfeeding isn’t any better than formula. And, I have 2 kids, never breastfed either of them, and we love each other so much.” Oh, lady. Please stop talking….

If my boobs weren’t flapping in the wind and my growing belly in the way of getting up quickly, I would have walked out of that room and demanded her supervisor. But, already emotionally wrecked, all I could do was roll my eyes and “uh-huh” her.

Thankfully, my cancer team (aside from random Breast Ultrasound Doctor) is amazing and called me with my results as I was walking to the parking garage. “It’s fine. The lump, which we all agree is there, does not have any cells of concern after doing 2 Fine Needle Aspirations. Come back after you deliver so that we can begin our survey of you quickly. Have a beautiful pregnancy.”

I got into my car and cried tears of relief. Then, I cried tears of pain. I’m not sure how many of my readers are familiar with Fine Needle Aspirations, but that procedure hurts! I think I had numbed myself to the physical pain in anticipation of bad news. Once the good news came, so did the burning pain in my entire breast area. And, just when I thought it couldn’t get any worse, I realized that I was leaving Boston at 4:00pm, with no additional passenger to ride the HOV lane with me. And, I really had to pee.

***

I managed to put the breast lump experience behind me and focus on having a healthy pregnancy. I convinced myself that this was my last baby, my last shot at feeling a growing being inside of my belly. This would be the last time I would feel the kicking, the hiccups, and the heartburn. This would be the last time I would place my hands on my stomach at the end of a long day and feel comforted by a stray heel, an intentional turn around, or a tightening Braxton Hicks contraction. This would be the last time I would provide nourishment for my biological child through breastfeeding. The last time I would lie down next to my infant and comfort him or her to sleep. With the removal of my breasts and ovaries, this would be my last time.

***
On March 24, 2009, I delivered my son. He was a healthy baby, 7.5 pounds, 20 inches long, dark brown eyes. Soon after I delivered, our pediatrician looked at his eyes to make sure there were no tumors. At 3 weeks old, we brought our son to our retina specialist for an exam. And, at 3 months, 6 months, and 9 months, our son returned for exams under anesthesia in case our genetic test stating the retinoblastoma of my daughter was an isolated mutation –which is only 80% accurate — missed something. As of his 9 month visit, we are still clear of any tumors.

***
At my visit to my OB/GYN for a routine exam, the doctor said, “I see in your chart that the OB who delivered your baby in March recommended that you consider the permanent birth control. You turned it down. Why?” she asked. “Well, while I’ve talked seriously and publicly about how this is my last child, it’s much harder to actually make that happen when the decision is possible. So, I’m not going to really consider a permanent solution yet,” I replied with much more confidence than I had in the past. “Well, given all of your genetic testing and information, are you sure you want to keep passing these mutations on?”

“Well,” I said calmly. “Given that my children only receive 50% of my DNA and 50% of my husband’s DNA, that’s still a pretty good chance that they do not have all BRCA or any other genetic mutation. So, yes, I think I do want to take my chances. But, my concern isn’t with what I’m passing on. My concern is more focused on how much time I can buy and gamble with knowing that I am BRCA positive.”

I’d like to think I created a teachable moment for the young doctor who had just joined the practice a few weeks prior to my appointment.

***

I’m not sure where the story ends, quite frankly. There are days when I feel I have no strength to carry, and there are days when I’m not exactly sure what load I am carrying. Just the other day, my daughter, the cancer survivor, asked me about how she got her cancer (a cellular mutation) and how her aunts got their cancer (a genetic mutation). When my daughter was going through her treatment, I made a single promise to her. I promised I would never lie about cancer. I explained about “good copies of DNA” and “sick copies of DNA” and how those combinations sometimes result in cancer. As I spoke of her aunts — my sisters — she then asked if I would get cancer. I told her that I wasn’t sure, but that I probably was going to have surgery on my breasts no matter whether I got cancer or not. My daughter began to cry. “Mommy, I really hope you don’t get cancer. Cancer really hurts, and I don’t want anyone to be hurt.” I explained that sometimes we have to experience hurt in order to see the beautiful things. That it hurt when I was in the hospital to have my babies, but that they were all the most beautiful things in my life. We talked about how it must have hurt to have her eye removed — though, she doesn’t remember it — but that now she is a healthy and beautiful 6-year old girl.

***
I always promised my daughter that I would never lie to her about cancer. There are just some days when I wish I didn’t have to tell her the truth. The truth is a burden to carry. The inabilty to predict the future is the uncertainty to carry. But, my children, my health, and the will to be around for many more years to come gives me the strength to carry.

Ask To Loosen the Mind

A mother turns to her 9-year old daughter and says, “It’s an incredible moment in history, dear. This is the first time, the FIRST time, that we have come so close to having a woman help run this country! Do you know what this means? It’s such a proud moment in our lives. I don’t agree with everything she stands for, but the fact that a woman is even on the ticket is monumental. Do you know this? Do you get it?”

While that conversation could have been any mother-to-daughter discussion in the 2008 election cycle, it actually took place 14 years earlier. Geraldine Ferraro. At that time, Ferraro was the first woman nominated by a major political power as its candidate for VP of the United States. I remember my mom talking to her friends, cheering, hoping, wishing that this would be the historic moment. They didn’t necessarily agree with the political agenda, but they definitely understood the significance.  And, they made sure we – my sisters and I – knew that it was significant.

But, did we? Nearly 15 years later, I can’t really say that I held on to the lesson of Geraldine Ferraro. I mean, I get it now. In fact, I’m even more amazed that it happened back in the mid-1980s because I don’t recall that decade being a particularly progressive one. Then again, I was 9-years old. The only “superwoman” in my life (aside from my mom, of course), was Barbie. She had a Corvette, a cute boyfriend, an amazing swimming pool, and cute clothes. Because, after all, that was the measure of success to a 9-year old. I also loved Care Bears, and felt it was my moral and humane duty to adopt a Cabbage Patch Kid.

Politics, not so much. I didn’t really care. I was nine. But, my mom wanted me to make sure that I knew that it was a significant moment. While I didn’t quite understand it back then, I certainly gained an appreciation for the context of her candidacy 15-years later. There were many events that helped to shape my early interest in feminism and gender equality, and I wonder “Was the Geraldine Ferraro event something that shaped it with latent effects?” I can’t say that I looked at her and thought, “If she can do it, I can do it too!” related to a career in politics. But, did something stick with me about power and gender?

So, this leads me to a question I’ve been asked a number of times in the past few weeks: “How much do I make out of Princess Tiana’s racial identity to my children?” Do our kids even get it? Do they care? Do we want them to care?

Ask To Loosen the Mind: In anticipation of the new Disney release “The Frog and the Princess”, a number of readers have written questions about whether or not they should draw attention to the fact that Princess Tiana is the first Black princess in a major Disney film. Here is a question from Emily H. that sums up many of the questions.

How would you suggest that I bring up the race of (Princess Tiana) in the new movie? I’d like to talk about it with (my) girls, but I don’t know how. On the one hand, I don’t – at all – want to “pretend” that she’s not African American, nor is her race any kind of taboo topic. On the other hand, since my girls seem totally comfortable with people of all races and race doesn’t faze them… How do I discuss it with them without ME making it an issue for them? — Emily H.

 

If I wasn’t too cheap (WordPress charges me to put video on my blog), I would be able to upload a video I took of me bringing home Princess Tiana dolls to my girls. In the video, my girls open up their Princess Tiana action figures and are thrilled by having a new toy. “Ooohh!! It’s Princess Tianaaaahhh!! Thanks, Mom!” they squeal and run off to play. Off camera, you hear my voice: “Girls, come back here! I want to talk to you. Do you know she is the first Black princess in Disney? It’s that so great! It’s so nice to have a doll that looks like you! See feel her hair, she even has hair like yours!” The girls continue, “Oooh!! Let’s play! Let’s play!”, virtually ignoring my historic lesson in racial identity and politics. I can’t b-e-l-i-e-v-e they want to go and just play!

The video goes on for about a minute. The girls talk about wanting to play. I lecture about how great it is that there is a princess that looks like them. They ignore me. I get upset they are ignoring me and my anti-racist lessons. They leave. I shut off the camera. But, before I hit the red button to turn it off, my off camera voice says, “You’ll understand it later.”

I didn’t quite think anything of it while filming. When I watched the video again later that night, though, I felt differently about what I had just done. As Emily asks, was I making more of an issue for them?  Certainly race is not a taboo topic in our house, either, but how much was I pushing this? If you ask my girls to tell you something important about President Obama, one of their first responses (after, “He’s the President” or “He’s smart” or “He’s a good dad”) would be “He’s our first President with brown skin.” That lesson certainly was not lost on them. President Obama has the same skin color as their dad, as their grandfather, as the leaders in their school, and as many of their friends. During the election, we showed the girls pictures of our past presidents and did a lesson on “differences and similarities.” They quickly picked up the difference in skin color. They also quickly picked up the similarity that the Presidents were all “boys”. My husband and I felt it was very important that we highlight President Obama’s heritage. Also important to us was that he was the father of 2 young girls, and my daughters shared that in common with their dad. They liked that the President had 2 little girls.

I don’t think my girls completely understand the “FINALLY, a Black Disney Princess!!” response that I feel when I see Princess Tiana. I grew up on Cinderella, Snow White, and Belle. I grew up on Barbies, white Cabbage Patch kids, and white characters in my books. I rarely owned anything that wasn’t white. I certainly didn’t own anything or read anything that had an Asian character. Now, as an adult with some purchasing power, I seek out dolls that look like my children. These days, I have more options. I recently bought a few dolls that have textured hair, like my children’s. And, I think that’s what I appreciate the most about Princess Tiana dolls. I like that my kids can play in this fantasy-like world and imagine themselves in it, included in it. I like that they feel her hair, and her hair feels like their hair.

We haven’t seen the movie yet, and I hope to write more of their reactions after seeing the movie (where, ahem, Princess Tiana spends most of her time as a FROG. Uh, huh.). But, much of what I have been reinforcing with my children in many examples (when we read multicutural books, play with multicultural dolls) is to point out differences AND mention that differences are a good thing. One of the biggest stumbling blocks that my college students seem to run into is the notion that differences=bad. They have been socialized to not recognize difference; that if you are different, you must be strange. So, if I think of you as the same as me, you must be okay. I find that, on a basic “treat me like a human” level, to be fine. However, pointing out any difference beyond basic humanity makes them socially uncomfortable. This discomfort around talking about differences is why I make a point to discuss it in a very casual way with my children. It’s been important for me to point out to my children that differences=good.

With my older daughter’s disability, it would be silly to pretend like she doesn’t have a prosthetic eye. It has become a part of her. That experience of going through chemotherapy, prosthetic fittings, dozens and dozens of doctor’s appointments has shaped who she is. So, to not treat her as such would dishonor her very difficult journey. It would be silly to ignore that she is different; different is what makes her so interesting.

I suggest finding a casual and informal way of pointing out that Princess Tiana is the first Black Disney princess. Perhaps gather their other dolls and do a simple lesson in “Similarities and Differences.” They will likely come up with things like, “They all have long hair; they all have 2 eyes, 2 arms and 2 legs; they all are Princesses.” They will also likely come up with “This Princess has brown skin; this Princess has white/peach skin.” Your reaction, and your leading, is what’s important here. It’s a good chance to talk about where Mulan comes from. In Emily’s case (she has biracial children with an Asian man), they might draw similarities between the way Mulan looks and Asian family members/friends. It might be a neat lesson to introduce them to the heritage of Pocohontas and Jasmine. If you react positively, and casually, to the different characters, your children will pick up that these differences and similarities are just a part of who we are.

I would also add that simply being comfortable with race is very different from talking about race.  Talking about race is something that takes practice and effort. It’s not enough to simply be comfortable with “being nice”, we need to practice “being nice”, right? Same with the race/diversity/etc. My colleague, Donna, the budding athlete, said to me, “It’s not enough to just like basketball and to be comfortable watching basketball. If you want to be good at it, you’ve got to pick up the ball and shoot some hoops.” (thanks, Donna).

My kids may not quite understand what that means for them or for me right now, but my hope is that they can look back and connect the significance later in their lives. The more exposure they get to different skin colors, hair colors, and stories, the less narrow their world becomes. So, thanks Princess Tiana!

Now, let’s just see if the “live action” Tiana (at Disney or on Ice) is actually played by a woman of African heritage. That’ll be the real test, right?