Dare to Be...the Same?

One of the hallmarks of high school for me was the feeling of uniqueness I thought our generation carried with us like a prize we won after our parents fought for civil rights and blazed professional trails for women. We felt free to be different/other/whatever we wanted. It truly felt like a privilege our parents didn't have. Sure, there was some patriarchal and racist bullshit we still held on to, and we certainly weren't openly discussing our sexual trauma and feeling totally free to express our sexuality if it veered from a heterosexual "norm." But we were getting there...we were one one step closer. We thought we were it.

I remember many of my friends in high school wore black clothes and Doc Martens, listened to grunge music, smoked pot, drank and smoked cigarettes, and fiercely loved anyone who came into the group regardless of race, orientation, or any other dividing factor. My high school was diverse, and I don't remember there being many mean girls or other bullying that resulted in violence. We weren't like the movies depicted high school to be, and I loved that. I realize this was my experience and might not be everyone's who went to school with me, but I firmly believe our school and generation was more tolerant, open minded, and loving than our parents' generation.

We danced to '90s hip hop at school dances, slow danced to metal hair bands, and found refuge in doing whatever we wanted to do with fewer repurcussions than generations before. I remember feeling such unity in my school, even though behind the curtain, we were divided by religion, cultural experiences, and socioeconomic factors. I grew up on the other side of the tracks in a neighborhood that formed my identity and will forever be the reason I am who I am. I spent time in houses in other towns that had 5 bedrooms and with people whose parents owned boats but then came home to beat-up cars parked in my court and friends outside kicking balls in the green patch in the middle of our court at sundown before the streetlights came on. 

Fast forward almost 30 years, and, despite years and cities between us, we're friends on social media with the people who helped formed us. But so much has changed. We've gone through our generation's period of unjust war, nurtured babies we thought we were bringing into this world to be even better versions of our tolerant selves, and experienced a period of political peace that would soon be unsettled and unleash a fury I've never witnessed before. Some of the people I thought were so tolerant and loving have turned out to be supporters of anti-this and anti-that, almost as if they need to be against something because life got too easy and boring, and so many of them just got selfish.

My high school memories of these people are beginning to be tainted by their vitriol and quietly violent rhetoric, and I've learned that social media isn't really for me anymore, aside from a random post or sharing things with family. How can someone who touted individuality and the beauty of being different now say that they care so much about someone else's gender identity to the point of being against them? How does this make sense? How does this live up to the Gen X mindset? It doesn't. And that's why I'm confused. What happened to make people so angry, so eager to be focused on themselves and what suits them the most? Where are those smart people I envied and adored, even if I wasn't close friends with them? How can so many people I grew up with who had fewer means than others be against social services?

The theme of my senior yearbook was "Dare to Be Different," and the cover was a rainbow:

I thought we lived that motto, but somehow so many of those people who shared that sentiment have turned hard against what we thought would be a gift to future generations. Don't you remember those 5 piercings you got in one ear because you wanted to be unique? Don't you remember being a girl who wore baggy T-shirts and jeans because fuck the patriarchy and a man's desire to see your breasts and skin? Don't you remember sticking up for that kid in class with a disability who turned out to be everyone's good friend? Where is that thinking now?

I'm stunned every day when I read the news, open up social media, see a sign on the street, hear about a relative someone had to quietly let go of. I don't know where we went wrong, Gen X, but we did. We failed to teach our children tolerance and manners, and we certainly haven't communicated that theme from my yearbook because those who did dare to be different are now ridiculed and hated. Help me understand. Start a dialog. If you disagree with my political and social justice views, tell me why and how you changed from that person I remember in high school who was friends with everyone. Our music taught us to be better than this, but I guess not everyone was listening to the radio along with me.

After the Knowing

Recently, I met my newborn niece for the first time and attended my brother-in-law's wedding. The only thing I'm missing to remind me about my mortality is a funeral. Seeing all the potential in a seven-pound human and the chapter of someone's life begin reignited mixed emotions in me that I didn't expect after having already come to terms with my diagnosis. That's the thing about receiving a diagnosis with no hint of a prognosis and no idea how a disease will affect me over the years or when it will kill me—I have no idea what to expect at each juncture.

I used to be the jar opener in the house. Whenever someone couldn't open a jar or container, including my husband, I somehow had the strength to see it through despite having very little upper body strength. It's like my body was preemptively compensating for the second half of my life in which I would never be able to open a jar again. These are the miniscule and mundane things I'm now realizing will be defining factors in how I move forward and handle these setbacks.

Everything I do with my fingers is painful now. I can't sew my husband's button back on to his suit 10 minutes before he officiates his brother's wedding. I can't dice potatoes without placing my hand in a compromising position that could end in a little skin slice. I can't put my eyeliner on without extreme focus and moving my hand at a snail's pace. I can't clasp my dead mother's necklace that I just placed around my daughter's neck for the first time without risking it falling to the floor. I can't paint my toenails with my daughter on her bedroom floor the way I always envisioned I would. I can't press down my son's flyaway hairs after he has dressed in semiformal wear for the first time. I can't pluck all the little black hairs on my chin and upper lip that I've been fighting my whole adult life. I can't even open my fucking pill bottles to take the medication that is attempting to save my life without paying for it each time. I mean, I can do most of those things, but it hurts like hell.

What I can do is type because it doesn't require a pincer grasp. Those of you who know me well know I've always wanted to be a writer. I playfully wrote what we'll call "poetry" in my youth, occasionally wrote nonfiction pieces here and there throughout my early adulthood, and I started a gratitude email chain when my children were younger and life was very difficult for me—just so I had an excuse to write and share my experiences with close friends and family. After conducting extensive research on my family's ancestry over the past decade, I decided that I would write a book about transgenerational trauma in the maternal side of my family. I stumbled upon my Aunt Patsy's 20-page autobiographical account of her early life, which included my mother's childhood, and realized I had a story to tell that was bigger than my own. But when would I write it? When would I find time to travel to Johnstown, PA, to research the Great Flood of 1889 in which a few of my ancestors died, jumpstarting a generational cascade of trauma and poverty? Is my trauma really trauma?

My Disease Origin Story

In October 2021, I was standing at the sink in the kitchen—washing dishes and listening to music, completely content and happy that I had thus far survived the COVID-19 pandemic and hadn't caught the virus. I was grateful. I was relaxed. But I felt a warm feeling come over my whole body, and parts of my arms and legs were going numb. I had difficulty breathing and thought I might pass out. I had no idea what was happening, but all signs pointed to a heart attack, which wouldn't be a surprise given my family history. I called out to my husband, and after waiting a few minutes, we decided to go to the emergency room. In the middle of the pandemic. At night. We waited hours, during which I sat and struggled to breathe, panicking that I was sitting in an overcrowded waiting room with people who likely had COVID-19—some who would probably end up dying from it weeks or months later. My first EKG was normal, and eventually I was called back to have blood tests and an x-ray of my heart. My heart was fine, and my blood test results showed no signs of a heart attack. I went home with a diagnosis of dyspnea (labored breathing)...and that's it.

I felt better over the next few days but was exhausted. When I received the x-ray report days later, I noticed it said, "Mild interstitial prominence bilaterally. Linear atelectasis at the left lung base." Additional info suggested follow-up regarding the lung observations. However, no one in the emergency room mentioned this. They didn't tell me anything was wrong with my lungs. I saw my primary care doctor, who recommended I schedule a visit with a pulmonologist. This jumpstarted my journey.

A local pulmonologist sent me for a CT scan of my lungs and a pulmonary function test (PFT). We received the results quickly, and he diagnosed me with interstitial lung disease (ILD). During my long, slow walk down the hallway to the exit, I realized everything would change. When I left his office, I drove through Mount Olivet Cemetery in Frederick and read some of the headstones, passing by Babyland on the way out, which gave me some perspective. Maybe I wanted to be reminded that I was still alive? I've always enjoyed cemeteries—reading the dates, names, and epitaphs and imagining the lives of those buried as if they were part of an anthology I was writing in my head. My mom isn't in a cemetery, or that's where I would have gone.

I always thought lung cancer would get me before anything else. It got my mom, my brother, and my aunt...and likely many of my ancestors on that side of my family who died young with no cause of death available for me to find. My official diagnosis was ILD-undefined, which means no one knew why I had fibrosis (permanent scarring) at the base of my lungs. My pulmonologist sent me for a 6-month follow-up CT and PFT; slight progression in fibrosis was evident in the CT, but my breathing was still considered healthy. The doctor still couldn't determine the cause of the ILD, especially after testing me for rheumatoid arthritis, which was negative. So he said, "Let's wait and see and keep testing every 6 months." I walked out of his office knowing I probably would never go back. I'm not a wait-and-see kind of person. I knew there were answers out there, so I called Johns Hopkins, which happens to be where my mother established and nurtured her career right up to the months before she died, and they considered me a good candidate to see an ILD specialist. Getting an appointment with a specialist there is a competitive process. You have to really need them, or they won't take you as a patient. A last-minute cancellation got me an appointment the week I had received the confirmation that I could be a patient. Within 2 weeks of confirming my status as a patient at Hopkins, I had blood tests and an hour-and-a-half visit with a young female pulmonologist who probably saved my life. I was heard. I was seen. I was examined. And all the irrational fears I had my entire adult life of dying from lung cancer were converted to a different disease. She suspected an autoimmune issue but couldn't determine the source without bloodwork.

What I didn't know or expect was that those blood tests would provide an answer. I honestly didn't look at the list of tests she ordered before having my blood drawn because I've had so much bloodwork over the years for my various other health conditions that it felt routine. I immediately received a phone call from the pulmonologist after the results were posted in my patient portal, and I was tentatively diagnosed with connective tissue disease–associated ILD. But she could only give me that generic diagnosis because she wasn't a rheumatologist, which is the specialist I needed to see next. She told me she was almost certain I have scleroderma, which is also referred to as systemic sclerosis (SSc). I didn't know the Scl-70 antibody test she snuck in with the litany of standard blood tests would be my golden ticket. I felt like Charlie Bucket in the room with Grandpa Joe, Grandma Josephine, Grandpa George, and Grandma Georgina, experiencing the moment I knew my life would change forever. I never thought I'd be excited to test positive for a rare disease. But I finally had an answer.

According to LabCorp, the Scl-70 antibody is seen in 20% of patients with scleroderma. This antibody is also associated with reduced survival. Scleroderma is classified as a rare disease. It's progressive. There's no cure. The only treatments available are aimed at maintaining quality of life, addressing the symptoms (e.g., reflux, pain), and suppressing the immune system to hopefully slow the progression of the disease. Research is ongoing, but no one has been able to come close to finding a treatment that shows promise for ridding the body of the scleroderma-associated antibodies (there are 3) or reversing the condition. The only thing I can do is take a proton pump inhibitor to prevent reflux from entering my lungs and causing further damage and take an immunosuppressant (Myfortic) to hopefully reduce inflammation and slow progression. So now I'm immunocompromised. I'm one of those people you're supposed to care about infecting with COVID-19, which means I'm also the person you DON'T care about when you choose to deny scientific facts and blow into someone's face because you're angry that people are wearing masks. I will likely need to wear a mask inside stores and buildings for the rest of my life...or at least as long as I know my disease is progressing and I'm taking an immunosuppressant. I can't go to indoor concerts in November. I can't attend a school function with my kids indoors in February when the flu and COVID-19 are running rampant through the halls. My life has changed completely.

Answers That Prompted So Many Questions

Looking back over the past 2 years, so many things were lightbulb moments—having Raynaud's the past 10 years, having to stop for an intense catching-my-breath session while biking downtown with my friend, having reflux that worsened very quickly the past few years and woke me up multiple times a night with coughing fits, having very swollen fingers while taking walks (thinking I had consumed too much sodium), the vitiligo that popped up out of nowhere one summer a few years before we left Virginia, the conversion of my hypothyroidism to Hashimoto's thyroiditis (the autoimmune form of hypothyroidism), my random exhaustion that I attributed to motherhood and working 3 jobs, severely dry skin that was diagnosed as eczema, episodes of severe vaginal bleeding and pain resulting from occasional adenomyosis, and a hiatal hernia that was diagnosed during a colonoscopy/endoscopy a few years ago. I added that up. It's 9 symptoms that were diagnosed as resulting from various conditions, some of which I was already receiving treatments for. Most of them are because of scleroderma.

It took a primary care doctor, then a gynecologist, then an endocrinologist, then a pulmonologist, then a rheumatologist to get me to where I am right now (I'm sure I'm missing an -ologist in there somewhere). And that's only because I was persistent and work as a medical writer. I'm aware of the amount of time patients have to spend advocating for their health and asking for help from doctors who just prescribe a pill and don't run tests that could be run. I had to research even more than I already do for my work. I had to ask for specific tests. I had to bring in published literature to explain what I thought was happening to my body. I had to ask for referrals. I had to walk away from appointments knowing I didn't receive enough information.

Months after I finally met with the pulmonologist at Hopkins, I had been on a path to halting my disease progression with CellCept (which then changed to Myfortic), reducing the Raynaud's flare-ups with a new blood pressure medication, and basking in the glow of a reflux-free life. Finally, after 4 months, I went to my first appointment with the rheumatologist at the scleroderma center at Hopkins on June 1. My appointment lasted 3 hours. Yes, I said hours. She and another doctor, along with a student observing, scanned my entire body for signs of scleroderma after taking copious notes about my symptoms. These people were speaking my language. I was able to save so much time in my appointment by speaking in clinical terms and telling them what I already knew, opening up space to ask some questions I might not have had time for otherwise. They used handheld dermatoscopes to check my nailbed capillaries. They grabbed large chunks of my skin in various locations and exclaimed things like, "Wow! You have such wonderful skin!" while rubbing my arms, wide eyed and complimentary. I felt like a scleroderma queen.

After my very thorough exam, the scleroderma specialist confirmed what I already knew and provided some additional reassurance that scleroderma isn't the death sentence it used to be. If you Google survival for scleroderma, you'll see that survival rates are measured in 5-year increments: X% of people live for 5 years, X% of people live for 10 years, etc. These are old data, and they're scary. CellCept and Myfortic, both the same medication (but one gives you less of a case of the poops), have changed the treatment landscape for scleroderma. People are living longer, healthier lives. Sure, there are those in the minority who need a lung transplant 2 years after diagnosis, and there are those whose bodies slowly harden until their organs turn to stone within 5 years. But my doctor said it's likely I'll live a long life, albeit with some health digressions over time. In order to do so, however, I have to keep taking this medication that severely reduces my immune system and makes me vulnerable to every type of lung infection and every virus or bacteria lurking in the shadows of our lives. I have to stay inside when the wildfires from Canada infiltrate Maryland. I have to be extra careful about heatstroke. I have to avoid being around large amounts of chemicals that can be inhaled. 

The Spinning Wheel of Acceptance

My finger issues have fluctuated in severity the past few months. But it's the first new symptom I've had since learning about my diagnosis, so it's terrifying. What's next? Calcinosis? Not being able to type? Losing my job? Asking my family members to pick up and carry everything for me? I wake up thinking about it. I think about it during meetings at work. I think about it when falling asleep at night. The lurking uncertainty about what's next will never go away. I've been spending so much time in therapy to develop tools to maintain a positive attitude and suppress (but only to a certain extent) my desire to seize the day and spend the money. I'm grateful that I have very little if no skin involvement right now, which is a major element of scleroderma. The type of scleroderma I have is associated with fibrosis or hardening of internal organs usually before the skin. I'm not sure which is worse, honestly. Scleroderma is literally targeting my healthy cells and forcing my immune system to work in overdrive, hence the immunosuppressant to calm down those evil cells.

For now, my main problem is keeping my Raynaud's at bay. In the winter, my hands and feet are blue/white multiple times throughout the day, frozen solid and so uncomfortable that when I'm working, it's so hard to concentrate. In the summer, the air conditioning has the same effect. My family has been supportive with this, although it does come with many comments like "I'm soooo hot" or "I'm sweating." I'll take it. I do lower the temperature at night so everyone can sleep comfortably. I keep fingerless gloves at my desk and wear thick socks or slippers most days. I keep sweaters draped over my office chair. I wash my hands in hot water multiple times a day. I purchased a cheap gazebo for my back yard so I can work outside in the heat (which I call my defrosting sessions). We plan to install a screened-in porch so I can basically live out there when it's warm.

I'm depressed. I'm anxious. I'm angry. I'm impatient with and intolerant of ignorant and hateful people. I'm not communicating with people as much. I'm taking things personally. I'm tired of explaining why I can't do that thing you want me to do. I'm worried I won't get to see my kids live adult lives. I feel guilty for the burden this places on my family. I want to educate everyone about this and save people. And I'm tired, tired, TIRED of always worrying. Will I live to age 90? Or will I get cancer before scleroderma can kill me? But none of us know anything. So the only thing I can do is live a more selfish life and FINALLY—for the first time in my adult life—put my needs first. So screw all of you! Just kidding. I still love you. Just let me do what I want. Okay?

June is Scleroderma Awareness Month. I started writing this blog post with the intention of publishing it at the beginning of June to raise awareness and share my news with the hundreds of people who don't know yet. I've told who I can...and if you're offended that I haven't told you, please don't be. I'm exhausted. I couldn't bring myself to finish this blog post until a few days before the end of the month. And that's how it goes these days. Things take forever to do, to feel, to learn, and to understand. Everything comes with a 10-pound weight attached to it. But, dammit, I'm gonna drag that weight into my Jeep, roll the windows down, and blast music while driving to the next awesome place I've been waiting to see. Wanna come?

Resignation

I’ve been watching my 13-year-old daughter transition from a pre-teen confused about the world and anxious to begin new things to a young adult with a plan. She wakes up every morning at 7:30—even though school doesn’t start until 9:30—and brushes her teeth, washes her face, gets dressed, eats breakfast, and makes her way to her desk for virtual school. She does all of this while I sleep. Somewhere, in the middle of a pandemic, she found a way to be accountable and not let her isolation and days that never seem to end change the course of the path she would have been on otherwise.

I’ve been watching this from the sidelines—from my desk while working 16-hour days. I didn’t realize it until this morning, but I envy her. She has something that I lost these past few years. She has motivation. I might not know what that motivation is, but it’s there. She has recently started getting herself ready for bed well before she needs to because she has found through extensive observation and experiment that she feels “terrible” when she goes to bed late and wakes up late.

I, on the other hand, find myself crawling into bed around 2 a.m. after working nonstop (I call myself the machine, but I need a cleverer name), cooking dinner when my husband can’t, loading the dishwasher, folding the laundry, answering emails, making appointments, watching a tiny bit of TV with my husband, and trying to find a few minutes in the middle of all of it to make house and yard repairs. (We bought a time capsule house—virgin everything from 1969 except a few appliances that were upgraded in the early ‘80s. It’s exhausting but thrilling.)

In that list I just made, I didn’t mention anything that I do for my well-being. Aside from the occasional TV show, I really just check off boxes and make sure everyone has made it through the day with minimal inconvenience—all while being terribly inconvenienced. Motherhood is a selfless state of being. But it doesn’t have to be every single fucking day.

This morning, I finally identified the word that describes the state in which I’ve been living: resignation. I have resigned myself to bloodletting my empathic state like an 18th-century cure-all for disease.

I’m a naturalist—a humanist who sees the value in what the planet has given us—and my sole purpose for living is to ensure my children’s footprint is light and gentle but inspires the human race to endure. But I’m also cursed with a strong tendency to internalize my loved ones’ feelings and make them my own. Some would label me an empath, which sounds like something you claim when you’re 15 and you’ve just discovered astrology and swear that your sign dictates your future and completely defines you. But my therapist and I have broken it down into scientific terms to normalize my general state of being. I am what some would call “a highly sensitive individual.” Somehow, I manage to focus on others’ needs and feelings and can completely set aside my own.

I’ve considered it a strength, especially given where my choices have taken me. I cared for my dying mother for years, rescued every animal I could, nurtured a man returning from war, birthed and raised two children, and remarried, this time to a man who needed my support just as much as everyone before him.

The past 20 years have felt like a day on a 1980s playground. I climbed the tall steps of the slide, bitching all the way up about how hard and steep it was, and slid down the solar-ignited metal, burning my skin but screaming about the thrill all the way down. I did this over and over, and usually the climb up wasn’t a choice but a necessity to propel all of us away from poverty and depression.

I look back on my time on the actual playground of my childhood with fond memories. It was a wild and dangerous place back then with few safety measures in place. It gave me the freedom to test the limits, which sometimes ended in a sprained ankle or getting the wind knocked out of me after dropping from the monkey bars. Perhaps that’s why I’ve been able to carry on as long as I have without losing my shit.

Well, I’ve lost my shit.

My therapist has been going through my cognitive distortions with me, and we have located many sources of anxiety that I really wasn’t aware I actually had. I mean, do you—the one reading this—realize I have an anxiety disorder? I suppose it’s typical for highly sensitive individuals to suffer from anxiety as we don’t really know what to do with the weight we carry as there’s nowhere to dump it without perpetuating the litter.

I’ve eaten too much food, drank too much wine, stayed up entirely too late—all things most of us have been doing while trying to survive this pandemic. But I didn’t do them by choice. At least that’s what I told myself. I felt like a victim of circumstance and a product of generations of hardworking descendants of immigrants who never became successful enough to pass on anything but recipes and love. Living with resentment has been my albatross most of my adult life. I have tried to demolish any thoughts of self-pity with a gratitude approach—grateful that I don’t have to suffer racism like so many of my friends, grateful that I have a college degree and can sit at my cozy desk for work, grateful that I’ve never lost a child…the list goes on.

My therapist told me last week to consider reinstating my gratitude practices. When I lived in South Carolina in 2012, I began writing weekly gratitude emails to a handful of friends. I picked something I was grateful for that week, even if it was just a good night’s sleep, and elaborated on it. It really put me in a positive place where I could focus more on what I could do with my day, rather than what my day would do to me. It was a nice place to be. Maybe I’ll do it again. Any takers?

I keep my private life pretty private, despite everything else about me being an open book. My kids are now disgusted by my exhibitionist tendencies, even though I taught them to love their bodies and to be comfortable in their skin. Now I realize they don’t have to be comfortable looking at my skin. I used to walk around the house with no clothes on after a shower, preaching about how all the women in my family peed with the bathroom door open and didn’t care who saw them do what with their bodies. It’s a liberating way to live, but I realize not everyone has the ability to feel so free. I nurture my gray hairs and regularly inspect the wrinkles on my face, wondering which intense day of sunshine and glory caused each one.

How can I love myself—my body—so fiercely and not love my mind with the same vigor? This is the challenge I am tackling in therapy. She asked me last week if I felt shame about anything in my past or present. I struggled to find something and couldn’t. Every choice I made contributed to each positive thing in my life right now. But that doesn’t mean that I’m stable and healthy.

I don’t know why more people don’t seek therapy. The things I’ve learned in the past 3 months have completely changed me. They have tested my romantic relationship, changing the rules of that game and illuminating the cracks that need mending. Now I try to steer myself away from codependence and needing to fix everything and everyone so badly. My therapist said, “If something happens in any of your relationships that drives them to end, will you be okay on the other side of it?” “Yes—yes, I would,” I said. Strangely, that makes it easier to sit in complications and let them work themselves out.

My progress has also helped me take a step back from my children and let them fail, make bad decisions, struggle, and slowly transition to a new way of living with a parent who doesn’t rely on her empathic weight to carry them across paths of burning rocks anymore.

Sometimes all of this self-discovery happens a little too quickly. I become overwhelmed or step too far away from responsibility so that I require very little accountability, especially from my romantic partner. I’m learning to balance my strengths with my weaknesses. And I’m handing over my resignation, trading it in for a bit of accountability for my own happiness. I might fail, and that’s okay.

I have a deep fear of death because I do not believe in an afterlife or anything remotely resembling any form of consciousness or soul after my heart stops. Can you imagine nothing? No, you can’t. And that’s terrifying. I thought I was living like each day could end that way, so I was making the best of it. But I wasn’t. So here I go.

Our First Five Seconds

A predictable phenomenon expelled you from the womb, and you were placed on my chest before I could bring my arms up to catch you. The universe had done the math and solved the equation to fit your round head into my cubital fossa. I already knew what you looked like—as if we had done this before in another time or dimension. The fluorescent assault kept your eyes closed but I waited for them to open. Will they be blue? Brown? Your face, a deflated purple balloon, slowly pinkened and grew to suit gravity. Around me machines shrieked, jubilantly shouting, “You’re alive!” The feminine gushes of enthusiasm poured out from all over the room while beneath my legs the business of restoring my fertility began.

It wasn’t like they said it would be, the other mothers. I was told a feeling—one they couldn’t quite explain—would overwhelm me once you were brought to me. But it didn’t happen that way. I should have known it would be like this for me. The off switch my trauma impregnated at age four was triggered. The signals were always delayed, held hostage by the invisible anxiety that my gut flora delivered to my brain in its own time.

But your smell was familiar. Your cells called out to my cells—a warning signal that soon they would be severed. I looked away from your eyes to observe the fantastic execution of the process and wondered why you didn’t scream in response to this violent kidnapping from your dwelling. Maybe your inherited trauma package included an off switch, too. I looked up to your father and saw his strong, sobbing face and, still, I didn’t feel the jolt I had been told would declare me a mother. I asked my body to bypass the off switch just this once.

Somewhere in the chasm of the hospital room I heard an instruction: “Place her on your breast and see if she will latch.” My elbow dropping slowly, your head slid down to where you had already been targeting, and you latched. Somehow it all functioned exactly as it was supposed to despite my indifference. The parallel reservoirs of my lips accepted the salty influx, and I licked away the proof that I did love you.

I'm Not Saying Me Too

Composed in 2019 and sat on until 2021.

Trigger warning: This contains material about sexual abuse, childhood trauma, and the Me Too movement.

Last night at his bedtime, I kissed my 13-year-old son on the head, holding myself there for about 5 seconds so I could smell his scent. It took me back to when he was six months old and clung to me to nurse, and all I could smell was his head.

When I backed away, I saw a look of annoyance on his face and asked, "Does it annoy you when I kiss your forehead like that?"

He nodded.

I said, "Please tell me if you don't want my affection. I know you're getting older and might start asking me to not dwell on my goodnight kisses...or even give them at all. And that's okay. Always tell people when you don't want them to touch you."

We transitioned to an age where he might not want me to show him as much affection, especially since he already struggles with affection due to his Asperger's diagnosis. It was a turning point for me. But it also triggered my trauma.

The Me Too movement is necessary. It has changed the landscape for individuals who have been sexually abused. There's a website, a hashtag, a support system, and a public voice in the media. People who have held in their pain for years have finally come forward.

When I first heard about Me Too, I thought, Finally, someone has said something. It was only after reading articles and hearing stories that it hit me—I am also part of this group. The delay didn't come because of denial or because I had blocked out my abuse...but because I had never considered it something I needed to confess or seek retribution for as an adult. It was something that happened to me. I told someone. I processed it. I moved on. I definitely acted in ways that weren't beneficial to me as a result, but I learned and am still learning. I was one of the lucky ones.

Sometime around 1991, my secret came out and it was "handled." Decisions were made. I grew up. I write all of that in the passive voice purposely—to protect my family.

I was sexually abused as a child. Before I turned 13, I experienced that abuse at the hands of an adult male family member, not related by blood, who was sick and didn't realize—even after the fact—that he did something wrong. It likely began when I was about 4 years old, but that's as far back as I can remember. He was an adult with his own family, and for the sake of that family, he was not charged with a crime. This decision was made by adults at a time when this type of activity was kept quiet for the sake of reputation or because a handful of lives would fall apart if we pursued legal action. I also agreed to it because I just wanted to move on. I didn't want the attention, no matter how much justice would be achieved. As a compromise, he received psychological treatment (I don't remember how much or for how long), and I never visited his home again until my grandmother was dying and then again after he died. At least I don't remember if I did. Maybe that's something I did block out. He had done this to others, too, even adults. The general consensus was that he was "creepy."

I lost part of my family. At least the connection with them. I lost family dinners, holiday visits, and a bond with those I held dearest to me. I managed to squeeze in a few visits with some by having them visit me, but that didn't last long. I don't know what happened in the years following my exodus, aside from what I heard secondhand and learned through letters. I never rekindled those formative relationships that could have contributed to a life replete with family dinners and spending time with people who just knew me.

I could have pressed charges, put him in jail, and watched his family struggle financially and forever hold me "at fault" for disrupting the family dynamic. Twelve-year-old me preferred to quietly walk away because at least they all knew. They knew what he was. His children were grown. It was their decision whether they would maintain a relationship with him and whether their children would as well. Perhaps their Christian virtue of forgiveness helped them to do so. Who knows—maybe his treatment reformed him.

Some of my family members had also suffered similar traumas when they were young and had triumphed over them as best they could. I had examples of how to process and move on. Looking back, I think I might have done things differently to protect anyone else he might encounter. But he was a homebody, and everyone else in our family knew what he did. I will forever feel guilty about not being brave enough to speak up for justice back then. But I've accepted that what I did was brave, and that's all I could do at the time.

After the talk with Social Services and the subsequent loneliness I experienced, I started smoking cigarettes, having sex at a younger-than-normal age, and seeking attention wherever I could get it (the latter part I know in hindsight). I bet that explains things for a lot of you who knew me then. I started relationships in high school with extreme passion and then extinguished them carefully out of guilt. I apologize to anyone I took advantage of or who was hurt by my actions.

Who knows if I would have done all of those things anyway as a way to explore my individuality and sexuality during a time when our culture told us to be different, be creative, and be strong. After all, high school girls were wearing baggy T-shirts with flannels and baggy jeans, and boys thought that was attractive. My friends and I were so far removed from the need to use our bodies to attract men. We used our words, our actions, and our connections to explore new feelings. I often took that a step further when allowed because I considered myself a passionate person. I guess I still do.

Thank goodness for the 1990s. If I had come out of my abuse into a generation of women who wore mini skirts and tube tops to attract men and took nude selfies that sometimes were maliciously distributed elsewhere, I might have gone down a different path. But I was supported by good friends and a community that emphasized inclusiveness and individuality. I know I told some of my friends about my abuse, and that's probably what helped me process things so early and provided a foundation for acceptance.

Then my grandmother died. My mom died shortly after, and I married pretty much right away. I had children and watched them grow without ever letting a man come close to them that I didn't extremely trust. I taught them to speak up and say what they feel—and to never accept affection when they didn't want it. Hopefully, I'm raising two individuals who will never experience what I experienced and will never have to consider themselves part of a movement that vocalizes their trauma. But when my son didn't push my affection away last night, I wondered how good of a job I'm doing. Have I become so complacent to where my confidence and expression have given them the impression that anything is okay? Or did he just simply not want to hurt his mom's feelings?

When I was a teenager, I used to change clothes in front of my friends (even males) with the blinds open in the dark and my lights on. I'm sure people could see me from the street, but I didn't care. Most of my friends were male and they rarely looked when I did those things. Who knows—maybe I made them uncomfortable. I wasn't embarrassed about my body, although I did have the normal teenage self-esteem issues regarding my acne and small breasts. My husband jokingly calls me an exhibitionist because I wouldn't wear clothes if I didn't have to. I've had to adapt my habits to fit my children's level of comfort because, unlike me, they both became uncomfortable with me changing in front of them as they got older. My mom, sister, niece, and I regularly changed in front of each other and other people. It was just how I grew up.

Looking back, I can now see where my identity drastically changed. Before I told my family about my sexual abuse, I was insecure, I tried everything to fit in, I got contacts at 12 so I wasn't "four eyes," and I fell in love with every boy at the playground. A while after I came clean, I faced the world with intense spirit and felt free of the burden—the secret—that put me in the shadows without any reason to feel like I belonged there. Why did I feel like I needed to come clean? What did I do? Nothing. It's like my secret was this blockage in my brain that wouldn't let me evolve. Once the secret wasn't a secret anymore, I felt free. I didn't have to choose a different room to sit in to avoid abuse. I didn't have to experience mixed feelings about spending time with family.

I've been learning over the years to love myself in spite of my flaws and to disregard anyone's views of me that aren't supportive of that approach. Now, at 40, I'm watching women unleash a lifetime of darkness and learning how to heal through being outspoken about their trauma. Those women are admirable, and it took a few brave souls to inspire the thousands (millions?) who have come forward so far. I'm proud of them. I'm happy that they're finally seeking their justice and that they've found a platform to do so.

But I'm not going to say "me too" on social media. It's my choice to openly condemn my abuser by name or to keep it to myself. After all, he's dead. Perhaps some of that is guilt for what my family might endure—or pity, really. My "me too" moment happened when my family member intuitively asked if I was being sexually abused...because she was too. I told her yes. We told our families. Our lives changed forever. We grieved. I grew. And here I am, telling you my story because I had written it a hundred times and never shared it with anyone other than a select few and one day at a college poetry reading.

I want my children to one day see this and know that it's okay to deal with trauma—no matter what kind—in the way they feel comfortable handling it. They don't have to join a movement. They can tell a few close friends and heal over time, like I did, if they want to. (Or they can write a blog post about not following a movement while actively participating in one while doing so. 😳 ) What's most important is that they learn from me how to be strong and advocate for themselves so they never have to decide whether to say "Me too."

Returning

In 2013, I started this blog. God, I was so young, naïve, and full of hope. Since then, I've raised my children to teens, got divorced, got married again, bought a house, relocated back to my home state of Maryland, and worked my ass off to the point that I stopped having time for writing. I found myself writing long-winded Facebook posts about this or that political/social/nostalgic moment, and I figured I should put it all in one place, even if it's only for my kids to see. So forget everything you read here back in 2013 because it's most likely not applicable to who I am now. But it built me. And it's a bit funny that I mentioned a hypothetical plague to provide perspective about material things. I promise, I didn't jinx us. Or maybe I did? 

Music rEvolution

When I was a pre-teen and then teenager, I thought my musical taste was spot on: Vanilla Ice was a style genius, Debbie Gibson spoke to my adolescent heart, SWV sucked me in with their harmonies, and Aerosmith gave me and my friends the ability to rock out in my 1995 Dodge Neon on the way home from school and on our quick drive to Fells Point. I remember driving around Edgewood at night with the windows down, cigarettes dumping ashes on my car's brand-new interior, Green Day belting out our anthem for the week, and then my tape player blasting Beastie Boys until we couldn't take "Brass Monkey" any longer. When I rode with a few chorus friends (you know who you are!), we rocked the Les Miserables soundtrack and the tape recording of our performance at All County, much to the chagrin of my non-choral friends (see picture below). I thought I was a musical genius, indulging in all of these genres, surely years above my parents in wisdom about music and what classifies as "good" music. Boy, was I naïve.

Now, as I'm driving my children around from school to home and from park to play date, I'm discovering how oh-so-very-wrong I was for so many years. I have my radio tuned to a local station that plays what they call "homegrown" artists and those you may not typically find on Top-40 radio, except for the few talented musicians who have managed to appeal to the majority and minority with their unique abilities. My children have discovered their favorites among the limited selection while still begging for Justin Bieber (how did that happen?) and My Little Pony's Minty Christmas soundtrack. Occasionally I bend to their collective will and play a pop station to give them a little bit of fluff entertainment, and I won't lie and say I don't enjoy some of it. After all, I'm not a total music snob who claims to only like the indie stuff. I enjoy a diva's talent and ability probably more than most music lovers.

But now my appreciation for music has more layers. I not only look for the awesome sound that will be epic to blast with the windows down, but I also listen for that voice that stands out, an acoustic guitar mellowed performance that virtually takes me to a coffee shop, or a sound that, quite literally, makes me smile and instinctively reach for the volume knob. There are so few songs like that for me, and some of them happen to be Top 40, but my criteria for good music has increased over the years. While I listened to my mom and dad play '50s and '60s Motown music in the car when I was very young, I slowly developed a taste for it that now, in my 30s, I'm proud of. When I hear Wayne Cochran's "Last Kiss" or the Marvelettes' "Please Mr. Postman," it reminds me of those drives in our tan Dodge minivan listening to the oldies station and feeling like I was the only teenager who knew the words to the music from my mom's Jitterbugging heyday (see picture below for visual representation of said van image and shot of my mom in a hoop skirt). At home, my brother would jam out on his guitar to '80s rock ballads and '60s and '70s Vietnam-inspired rock, all of which I internalized but never really understood until now. If there's one thing I miss from that time of my life in regards to music, it's the few moments of harmonizing and rocking out with my brother in the basement (see picture below). I'll never get that back. We could have been awesome together. His first and only guitar lesson with me consisted of an easy tune: "More than Words" by Extreme, on which we harmonized to the point of complete distraction from actually learning guitar. He's my musical inspiration. If only he knew.

I have since developed a taste for older music, realizing that my parents and brother were right after all. Their music was better. But so are the artists I'm discovering today on my local station and through friends. It is because of that station and a few music lovers I know that I have latched onto and blasted repeatedly Ray LaMontagne's "Trouble," Mumford & Sons' "I Will Wait," and Gotye's "Somebody That I Used to Know" (before they all became huge). On my own, I have found refuge in Jewel's haunting childish-but-mature vibrato throughout the years and Jason Mraz's ability to appeal to the masses but also woo me with "I Won't Give Up." Adele is obviously a no-brainer, and whoever introduced me to her deserves a big hug. She provided me with hours and hours of sing-alongs on road trips to Maryland over the past year.

Everyone's taste in music is different. We all love different musicians and bands for different reasons. But my taste has evolved over the years, much as I have, and I wish to recognize the maturity that comes along with that evolution. Anyone who knows me knows I love change. This change, however, has been slow and necessarily so. I still love a good Katy Perry romper and classic Usher R&B feel-good song, but my heart lies with those who make me really feel something. That's what it takes to get to me today: an artist who can reach through all of the chaos and screaming children and still make me notice him or her. That takes true talent.

Now, as I drive around Charleston in my 2005 Honda Odyssey minivan, complete with car seats and children's books, I find myself turning the speakers to the front when one of my kids says, "Not this song again!" after I hit play for Jewel's "Fading." How young is too young for headphones and a portable CD player or iPod for the littles? :-) They do appreciate Bryan Adams' "Summer of '69," though, so at least they do have some taste.

No more cigarette ashes, tape players, and late-night trips to Fells Point. Now it's just me, the kids, the local radio station, and my collection of "mature" music that I hope someday, in their 30s, my kids will appreciate for what it is. They're lucky I don't torture them with my All-County Chorus tape. "What's a tape, Mommy?" I can hear it now.

For my rock-out anthem, click here:

http://www.youtube.com/watch?v=9f06QZCVUHg