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?

Voices

We all hear voices. There are voices that encourage us, tear us down, remind us where we parked the car, and debate whether to eat that piece of late night chocolate cake or choose a tall glass of water instead. We all hear voices. But, how many of us listen to them? How many times to we need to hear them before we believe them?

On Sunday, we had our first snow storm of the season. It wasn’t a major storm, only left about 1/2 an inch on the ground. But, given the unpredictable weather here in the Northeast, there was snow, then rain, then snow. Outside was like a winter wonderland, if said wonderland was a thick sheet of oil on wax paper.

My husband was outside scraping the car windshields and pushing the shovel on the driveway to clear off the layer of snow. He and my girls were getting ready to go to the movies, so he was working quickly. He set his own car radio to his favorite hip-hop station and closed the door. The music was loud enough to hear it, but not quite loud enough drown out the sound of my old car engine humming and wheezing as if the cold triggered some sort of automobile asthma.

“Jorge. Jorge.” Jorge looked up at our house and saw an empty window. He heard a woman’s voice call his name, and figured if it was me, I’d just come outside to speak with him. “Jorge. Jorge.” He looked towards my next door neighbor’s house. Our neighbor is 9 months pregnant. He thought maybe something was wrong, but with the two cars in their driveway, he was confident no one was calling him from their house. Jorge returned to dragging the shovel along the ice covered driveway. Tsksaappshkkkksh. Scrreeeppphsskkkksh. Scraappshkkkk. He fell into a groove scraping the snow back and forth across the wide part of our driveway. Shovel hits the pavement, walk across the driveway, toss the little fold of snow onto the grass, turn around and repeat.

“Jorge. Jorge.”

“Okay, I heard that,” Jorge thinks to himself. He put down the shovel and walked around the side of our house. Maybe our neighbor who lives behind our house was calling him. Jorge looked over at their elevated back porch. No one there.

At this point, Jorge had been outside for more than 8 minutes, and it was time to get the girls and leave for the movies. He placed the shovel against the side of our house, turned off the cars, and stood up to admire his great driveway work. Hands on his hips, chest out, head held high — Jorge had that  “I-Am-The-King-Of-My-Driveway” feeling.

“Jorge. Jorge.”

Jorge walked to the end of our driveway, looking to the left and to the right. He had heard the voice this time, but now he was listening.

“Jorge. Help!”

Across the street, through the thick wooden slats of the newly constructed ramp, Jorge saw a pink long sleeve waving at him.

“Jorge. I can’t get up. Please help me.”

Jorge leaped across the street to find Margaret, an older woman in her 80s, who recently had surgery, lying flat on her back at the bottom of the slippery ramp. His heart began to beat frantically. “I came outside to place sand on the ramp, and I fell. I can’t get up,” Margaret said with both an urgency and relief.

After helping Margaret, offering to call an ambulance or a family member,  shoveling her driveway, defrosting her car, and sanding her ramp, Jorge came back into the house.

Liza, I heard her,” Jorge said visibly shaken as he re-told his story.She had been lying like that in the cold for at least 5 minutes. I heard her. I know I heard her. But, I ignored her. I don’t know if I ignored her or the voice, but I definitely heard my name called a few times. Imagine if I went inside and never came back out? Imagine if I never was outside to begin with, and no one helped her? I heard her voice, and I didn’t listen to it.”

****

I went to the grocery store this evening just to pick up a few quick items. Butter. Bread. Cheese. Nothing special. I fit these items in my arms, forgoing the gray plastic basket with the thick black handle. I find the grocery store experience to be hit-or-miss. Sometimes, the store is filled with friendly people — people who make passing conversation while selecting fruit in the produce aisle, a kind person with a shopping cart full of groceries who lets you go ahead if you only have a small basket, or a cashier who smiles, looks you in the eye, and says, “Hello!” Then, there are the times when people aren’t so friendly. Those are the times when people park their shopping carts in the middle of the already skinny aisle, or when you are coming out of an aisle and a person is steamrolling their cart perpendicular to you, or a cashier who can’t muster out a “Do you have your Stop & Shop card” without attitude.

Today was one of the “unfriendly” days. Even in the 15 minutes I was in the store, I already felt anxious and annoyed. In the line, I placed my items on the belt but didn’t bother to separate my items from the person in front of me with the plastic “don’t-even-come-near-my-food” bar (despite the fact that you could have laid a small child end-to-end between her items and mine). I was annoyed. I wanted to get out of there. I already had my Stop & Shop card and my debit card ready to go.

I could feel someone enter into the line behind me. Since the grocery store rules of engagement were already set at “don’t mess with me”, I just kept looking straight ahead. “Miss?” Eyes focused, straight ahead, counting the items until it was my turn. “Excuse me.” I didn’t recognize the voice, so I kept looking ahead. Phew! Almost done with the woman in front of me.

“Ma’am, excuse me, could you please help me?”

I turned around quickly and glanced slightly above my own eye level. At 5’3″, just about everyone is taller than I am, so I naturally look up whenever I anticipate eye contact. No one.

I quickly gazed down. Behind a gray basket piled high with food was a man with a black eye patch over his left eye. He appeared unsteady in his wheelchair as he balanced the overflowing food.

“Ma’am, I was wondering if you could help me unload the items onto the belt. It’s too heavy and far for me to reach.”

“Sir, yes. I’d be happy to help. Is there any particular order you want these in — boxes first? Cans first? Produce?” Did I sound like I was overcompensating in an attempt to relieve my embarrassment?

“No, if you could help me get them on the belt I can ask the person bagging them to stack it evenly.”

I began to unload boxes of stuffing, packages of ground beef, multiple cans of vegetables, and a rather heavy Jennie-O turkey onto the belt. “Looks like you’re cooking up a feast!” I say with a smile. “It’s like a Thanksgiving meal!”

“There’s a lot to be thankful for, ma’am. There is no sense in realizing that only once a year!” he said with a smile. My eyes moved from his teeth to his brown eye, and then over to his eye patch – a familiar and comforting object in my world.

I looked at him, in his eye, and returned the smile. “You’ve got that right,” I said.

“Thanks for your help, ma’am. God bless.”

“You’re welcome, Sir. Enjoy all that cooking!”

I finished paying, grabbed my bags, thanked the cashier and the young man who put the items into my reusable shopping bag, and left.

***
In 24 hours, situations could have turned out differently if we didn’t listen to voices. We heard the voices. I know my husband and I can both admit to that. But, neither one of us listened to them. What was it like for Margaret to see my husband — just barely across the street — and have him ignore her cry for help? Had he gone inside, she would have been alone. Cold. Scared. Frustrated. What was it like for the man in line to try and get my attention at least 3 times? Did he feel angry? Upset? Invisible? I heard him. I certainly did. But, I didn’t listen to him.

When do we ignore voices? Which voices do we choose to listen to? Which voices do we choose to hear? How many times have we left someone feeling alone, cold, scared and frustrated? How many times have we left someone feeling angry, upset and invisible simply because we chose not to hear or listen to them?

What do we risk by searching for those voices that we hear, by listening a bit closer to see if they are cries for help, assistance, or just connection? What do we gain?

The Golden Rule of Differences

I went to college about 90 minutes from where my parents lived. It was just close enough to visit during special occasions (acapella concerts, award nights, out to dinner, etc) but far enough that you had to plan on visiting. I loved my college, and my parents felt welcomed by my hall mates and friends. During every visit, there came a time when my dad would turn to me and say, “I have to use the bathroom. Can you stand outside?”

Let me explain.

I went to a college where every bathroom in the residential spaces was co-ed. Yes, co-ed. There was anywhere between 3-5 toilet stalls and 3-5 shower stalls. That means I went to the bathroom next to a man. I often showered next to a man (in a different stall). I brushed my teeth next to a man. Even though I lived on an all-women’s floor my first year, the bathroom was still considered co-ed.

This freaked out my dad. Even though the official college policy stated that it was fine that my dad used the bathroom (and it would have been fine if a woman then entered that bathroom), he couldn’t do it. I had to wait outside of the bathroom and ask my hall mates if they could wait until my dad came out. And, because my dad was, again, so uncomfortable by this practice, he usually was only in that bathroom for less than a minute.

It’s been over 12 years since I last used (with any frequency) a co-ed bathroom. While I’m pretty sure I am comfortable with the practice, it would probably feel a little strange to me the first few times if I had to be in that environment again. I’d get used to it, of course, but I’d be foolish to say that it wouldn’t throw me off the first few times.

The past few weeks, my work life has been consumed with facilitating conversations about differences, respect, civility and inclusion. Along with my colleague, Donna, we’ve been in classes, hosted dialogue groups, and had conversations with students, faculty, staff, and administrators. While most are open to the conversation, we always get a handful who bring up this point: “Why do we have to talk about differences? Why can’t we just treat everyone the same?”

Seems like a decent request, right? I mean, didn’t we learn in kindergarten that we should “treat people like we want to be treated”? Golden rule.

At this point in our careers, that question doesn’t throw us off anymore. Here is our response:

Golden Rule. Yes, we should treat one another the way we would want to be treated. No doubt.

Differences. Unfortunately, so many of us have been socialized to believe that being different is a bad thing. We need to start embracing that being different — different from one another — is a good thing.

The Golden Rule of Differences? Treat me the way you’d want to be treated — like a person with your own unique personality, character, experience, identity, family, religion, ability, etc. I have a different set of finger prints, a different shade of eye color, a different height, body shape, and shoe size than you. I have a different family structure, favorite food, favorite song, and favorite shampoo brand than you do. I have a different car, size jeans, and number of siblings than you do.  And, all those things say something about me. They don’t define me, no. However, they all impact who I am, decisions I make, and how I move around this world.  None of those aspects make me better than you, nor you me. Yet, they make me who I am.

You probably don’t want to be just like me. In fact, you’d likely not want to use my pomegranate scented shampoo, drive my beat up old minivan, nor wear uncomfortable heels all day. You probably enjoy the scents you like, the car you drive, and the shoes you wear. So, wouldn’t it be odd if I told you I was going to start treating you as if you were “the same as me?” Sounds so simple. Yet, when we substitute those basic interests with words like race, sexual orientation, religion, etc., individuals get tripped up over wanting to just “treat everyone the same.”

I agree that we sometimes perpetuate these differences. After all, why should my dad feel strange entering into a public bathroom where there is a woman, especially when the college rules — and that college’s cultural norms — explicitly say that it is okay? He felt that way because he sees a difference. He grew up socialized that men and women shouldn’t share the same public bathroom. In fact, if  a man walks into a women’s bathroom in a public space, he likely would have security escort him out of the building (after being detained and questioned).

Differences aren’t a bad concept. Differences allow us to find our unique soul mate. They allow us to be attracted to one person over another. They allow us to mix up the genetic pool. In my family’s case, differences in genetics have given my children a 50/50 chance of inheriting any combination of genetic mutations. Differences allow us to be interesting, intriguing, and insightful. They allow us to argue, disagree, and reshape our experiences. Calling attention to our differences is only negative if we can’t see the value in being different from one another.

My Golden Rule of Differences: Treat others as you would like to be treated; like an individual who can contribute in ways that make our world a better, brighter, and more interesting place to live, learn and grow.
Be different. Embrace difference. See the importance of difference. Learn from difference.

POST NOTE: I’m actually a big fan of gender neutral bathrooms for a few reasons: 1) gender neutral bathrooms often have a baby changing table which means my cute husband can’t use the “there is no changing table in the men’s room!” excuse when baby has a poop-diaper; 2) gender neutral bathrooms means hubby and/or I can take all of the kids into the bathroom (boy/girls) without worrying about comments, and 3) gender neutral bathrooms allow for an option for individuals who identify as transgender to use a bathroom without fear of judgment about their gender identity.