Conjoined Twins

Chang and Eng Bunker. Born 1811. Thailand.

 

One might wonder how conjoined twins manage to survive – physiologically, mentally, and emotionally – after surgical separation. While some sets of conjoined twins, for medical reasons, cannot be separated, as in the somewhat famous case of Brittany and Abby Hensel, since 1987 several have been successfully separated. In some cases, conjoined twins, who are old enough to make thoughtful choices, have refused to be separated. Lupita and Carmen Andrade, who were expected to live only three days after they were born, not only defied the odds, but are now living together, literally. Both refused the option to be separated. According to the Deccan Chroniclethe twins say “it would be like cutting them in half.”

The decision to surgically separate conjoined twins is not one to be taken lightly. Inevitably, ethics comes into play. The most urgent question of all: What if one twin must be sacrificed? Do we allow one twin to die to save the other? Which twin’s life matters more? The questions are endless, questions I can’t imagine having to face if I were the parent of conjoined twins.

You might be wondering why I’m writing about conjoined twins, why I’m sharing with you this extremely rare and mind-blowing phenomenon. I’m sharing all this with you because I cared for a set of conjoined twins as a neonatal intensive care nurse. Though decades have passed since I held all *fourteen pounds of sweetness in my arms, fed them, changed their diapers, and held my breath as I waited for the then eight-month-old twins to come out of the hours-long surgery, I’m still awestruck. So what does a writer do with all that awe? Naturally, she writes about it. Which is exactly what I have done in my essay, “After,” published today at Intima, a literary Journal dedicated to promoting the theory and practice of Narrative Medicine. Created in 2010 by graduate students in the Master of Science program in Narrative Medicine at Columbia University, Intima has featured writers in the literary and medical fields from around the world.

Thank you for reading “After,” and feel free to follow-up with thoughts, questions, and, of course, your own awestruck moments.

 

*fourteen pounds is a guesstimate.

Read More

March for Women, Compassion, Unity, Equality

yes_we_canThis past Saturday, at least fifteen thousand people marched through downtown Montpelier, Vermont, in the name of women’s rights, human rights, compassion, unity, and equality. I was among the thousands who sloshed through mud puddles and climbed over snow banks, each one of us determined to stamp out hatred and bigotry.

I’m not one for crowds, especially large crowds; if you have an anxiety disorder, like PTSD, you know what I mean. But I packed my Xanax – just in case – and drove the 40 miles with my step-daughter (thank you Rachel for being there with me) from Burlington to Montpelier, waited in five-miles of backed up traffic on the interstate before making an illegal U-turn (I can’t tell you how good it felt to break the law!) so we could exit onto an alternate route leading into town, then parked a mile from the state house. From there, Rachel and I took our first steps toward the center of inclusivity: the golden-domed state house.

Montpelier may be the smallest capital in the nation, but our voices here in Vermont are far from small. Yesterday, as we marched together, thousands waved signs reading, “Yes we still can … We should all be feminists … We the people … complacency is complicity.” We sang and chanted and shouted against oppression and injustice. We spoke out loud for what is right: helping the homeless and the poor, treating with dignity women, people of color, Hispanics, Jews, Muslims, gays, LGBQTs, the young and the old. And the disabled.

I give the disabled a sentence of its own, not because I believe they’re superior to others; I do so because I know too many disabled people, mostly those who have sustained traumatic brain injuries (TBI) and are now living with chronic side-effects, such as vision difficulties, chronic anxiety, sleep disorders, and rip-roaring headaches. Due to their injuries, some find it difficult to engage in substantial gainful activity, a social security disability insurance (SSDI) term meaning your medical condition prevents you from doing more than “insignificant” work. And if your disability prevents you from working twenty hours or more a week, the typical threshold for receiving employer-based benefits, this likely outcome is this: no health insurance. With the enactment of the Affordable Care Act, though, those with disabilities had options, and they didn’t have to worry about being discriminated against for having a pre-existing condition (a TBI for instance). The ACA offered increased accessibility to community health centers, and enacted a provision that axed annual and life time limits – a godsend for people with disabilities. For those who receive SSDI and Medicare under the program’s guidelines, they are (or should I say “were?”) protected.

But it’s 2017, and winter has arrived. “He who must not be named” plans to eviscerate the ACA, with no alternative other than the ambiguous executive order he signed just hour after he was inaugurated directing federal agencies to relieve individuals, state governments, businesses, and health insurance companies from “burdens” placed on them by the ACA.

Whatever that means? In the meantime, there are nearly 50 million people in the U.S. who have a disability, and about 8.8 million who receive SSDI benefits. Though “he who must not be named” promises Medicare for All, this is sheer talk from a man who, well, likes to talk. And, of course, “he” has to deal with the Republican controlled congress. What do the millions receiving Medicare under SSDI benefits – and those sixty-five and older – have to look forward to?

I wish I had a magic wand to make it all better, but I don’t. Yet, I do have my voice. I share my voice with you, sing and chant and cheer for you, keeping in mind the words that Martin Luther King Jr. spoke in 1965: “Our lives begin to end the day we become silent about the things that matter.”

The more we speak, the louder we speak, “about the things that matter,” the closer we come together, marching forward toward human progress and shaping a world in which every single one of us matters.

 

 

 

 

 

 

 

Read More

Gratitude

gratitude

Every Thanksgiving I think about all that I’m grateful for, but this Thanksgiving is different, which isn’t to say I’m not grateful for a heated home, warm clothing, plenty of food in my refrigerator, my husband’s culinary skills, a fluffy pillow on which to lay my head every night, hot tea with local honey every morning, and, of course, family and friends. I am grateful for all of those things, and much more, including the time I cherish for writing. So how is this year different? The ever-widening wake of divisiveness ripping through our country, and beyond, has knocked the wind out of me with such great force that I’m finding it difficult to breath deeply these days, deeply enough so that I am fully sated with gratitude. (Just so you know that wasn’t easy to admit.) For as long as I can recall, no uninvited change of events, or individual, not even someone the likes of _______ (I still can’t say his name) has left me so winded.

But, as I write this somewhat depressing post (it gets better, I promise), I realize that, hey, it’s Thanksgiving, and I cannot, will not, let ______, or the divisiveness, continue to deprive me of the air I need to take full breaths. After all, if I don’t, what good am I? If I don’t breath in all the gratitude my belly can house, then I’m giving up. And isn’t giving up a selfish act? Just writing that makes me queasy. So, what next? My closest confidante tells me to act. But easier said than done, right? Maybe not. Maybe to act means starting small, even if small doesn’t seem like enough. Maybe to act means to listen – to others, all kinds of others. Closely. Maybe to act means to be proactive; to ask what others need before they have to ask for that need; to offer food or drink or a hat to people on the street before they have to beg for it; to speak out and give on behalf of others who have been tongue whipped into believing they have no voice at all.

I think I’ll act this Thanksgiving by asking my eleven-year old niece if she has any ideas about how to be proactive since  _______ was elected. Who knows, maybe she’ll come up with one, or two or three, that will knock the wind out of me – that kind of breathlessness I welcome.

I hope you, too, will follow along, and fully breathe with me, because, hey, I need you; no one can do it alone. With that, I offer you a heaping serving of gratitude for listening to me. Thank you. Wishing each and everyone of you a happy Thanksgiving.

P.S.

For dessert, here’s what else I’m grateful for:

My mother-in-law’s stories, and crocheted hats

The change in seasons

The awareness to listen

Sleep

Warm baths

Good wine

Good books

Flowers any day of the week

A lit candle

Things that make me laugh

Anything that makes me cry

A homeless man who says he likes my smile and to keep smiling

The time to volunteer

Visiting with my ninety-four-year-old neighbor

Pain (a reminder that I’m alive)

Relief from pain

My mother’s every-other-day phone calls

The nursing home staff who take good care of my father

My brother’s generosity, and humor; and his wife’s cheerful spirit

My three stepdaughters, who don’t mind my quirks

My niece, who still likes to play with my hair

My eight-year-old nephew, who still lets me give him smooches on the cheek

Chimes singing with the wind

Rabbits

The smell of a newborn baby

Holding a baby (someone else’s baby)

Walking barefoot in the sand or grass

Popcorn, lots of popcorn

Dark chocolate

My husband’s hands on my feet

My husband singing to me

A dog’s wagging tail

Personalized cards in the mail

All of those who have helped me become the writer I am today

Quiet time

Surviving

Being alive

 

 

Read More

“Surviving and Thriving”

surviving_thriving

A few weeks ago, I stood on a stage in front of hundreds of people, shaking like a mother@#$%!&, and shared my story of “Surviving and Thriving” at the annual brain injury conference held by the Brain Injury of Association of Vermont. I also listened to others, including mental health providers and rehab specialists – share their experiences with TBIs. As the theme of the conference, “Surviving and “Thriving, came up over and over again, I began to think about what that phrase really means for TBI survivors, and others. I wasn’t looking for the “pull-yourself-up-by-your-bootstraps” kind of answer (I’d like to see someone take on that impossible task, literally.) Of course, precisely how each one of us survives and thrives differs, but I came away from the conference realizing that a common denominator does exist: Human emotion. Because we’re human, we’re vulnerable and experience grief, anger, jealousy, anxiety, and so on. That being the case, I’d like to share some takeaways from the conference, tidbits offered by Psychologist Laura Basili, which define, at least for me and hopefully for you too, the nitty-gritty of “Surviving and Thriving”:

 1) A willingness to remain vulnerable. Being vulnerable is part of “Surviving and Thriving,” though we tend to equate vulnerability with weakness, and who wants to be perceived as weak? But, alas, like I said, we’re all vulnerable, like it or not, and it doesn’t mean we’re weak at all. If you don’t believe me, maybe the poet David Whyte will be more convincing: Vulnerability is not a weakness, a passing indisposition, or something we can arrange to do without, vulnerability is not a choice, vulnerability is the underlying, ever present and abiding under-current of our natural state. To run from vulnerability is to run from the essence of our nature, the attempt to be invulnerable is the vain attempt to be something we are not and most especially, to close off our understanding of the grief of others. More seriously, refusing our vulnerability we refuse the help needed at every turn of our existence and immobilize the essential, tidal and conversational foundations of our identity.

The operative phrases, which are worthy of repeating, are in the last two sentences: To be invulnerable is … to close off our understanding of the grief of others. More seriously, refusing our vulnerability we refuse the help needed at every turn of our existence and immobilize the essential, tidal and conversational foundations of our identity.

So why not wrap your arms around vulnerability, walk alongside it, or invite it into your home?

2) We first need to understand grief before we can grieve what we’ve lost – maybe it’s the loss of independence after a brain injury or the death of a loved one from a TBI, or any other kind of loss. But grief doesn’t only come in the form of sadness; it also presents itself as anger, denial, guilt, fatigue, desperation, hyper-vigilance, resentment, and anxiety. So when you’re socked-in by one of those emotions in the aftermath of a loss, know that you’re doing what humans do: grieving. To grieve is to grow, meaning you’re “Surviving and Thriving.” As Laura does with some of her patients, if you’re struggling with grief, you might want to try drawing a picture of suffering, then drawing one that resembles hope. I’d love to see what you come up with.

Oh, I almost forgot one more tidbit, something that brain injury survivor Hannah Wood shared during her keynote address: Do one thing every day that scares you. That doesn’t mean you have to free climb up the face of Half Dome in Yosemite or go skydiving. Maybe it’s applying for that dream job you’ve been telling yourself you’re not qualified for because you’re afraid of being rejected. Maybe it’s making that phone call to a certain individual who has experienced a similar traumatic experience as you, but you’ve held off, afraid she’ll tell you she doesn’t want to talk about it. Whatever the scary thing might be, go for it! After all, as Laura shared with the audience from one of her clients, “The suffering is in the waiting.”

 

 

 

 

 

Read More

Rejection

rejection

Remember that punched-in-the-gut feeling when the one guy (or girl) you had a crush on in high school went to the prom with your best friend instead of you? Or how about the first time you tried out for the soccer team and you didn’t make the cut? Rejection doesn’t feel very good. You might as well be a deflated balloon. That’s what it felt like for me when a literary journal recently rejected an essay of mine. I’ve received lots of rejections from journals, but this one, for no reason I can explain, hurt like a motherfucker. Because I’m generally a curious person, I can’t help but wonder why rejection causes humans so much emotional pain.

By nature, humans are social beings. Just as we need food and water to survive, we depend on others to feel a sense of belonging. To be rejected is like suffering from hunger and thirst. Because we have access to technology and other modern conveniences, we could manage to lead a solitary existence, though it would likely be a depressing one. To say “I’m in a lot of pain” after receiving a rejection letter from your top choice college, or after failing to land your dream job is not merely a figure of speech. It’s as real as physical pain. Through MRI studies, researchers have found that rejection stimulates many of the same areas of the brain involved with physical pain. As researcher Naomi Eisenberger describes, “As far as your brain is concerned, a broken heart is not so different from a broken arm.”

So, if we feel just as lousy when rejected as we do when experiencing physical pain, maybe the two cold be treated in the same way. That’s what researchers thought, and had a group of volunteer subjects take Tylenol for three weeks, while a second group of subjects were given a placebo. At the end of the study period, those who were given the Tylenol reported fewer episodes of hurt feelings. To confirm those reports, MRIs were taken of the Tylenol group, and showed less activity in the pain regions of the brain. Similar results have been found in real-life:  The same researchers conducted MRIs of individuals whose partners had recently ended their relationships, and when they were shown pictures of their ex-partners, the pain regions of the brain lit up.

Of course, while some individuals experience very few rejections over time (personally, I don’t know any of those people), others experience one rejection after another. And how each of us copes with rejection differs. Some are better at picking up and moving on; others crawl back into bed and bury themselves in the dark. (I’ll admit it: sometimes that’s where I end up, back in bed.) But, even though studies have proven that Tylenol can heal hurt feelings, pain serves us well. Since it’s an evolutionary advantage that we maintain social connections, though it means risking rejection, if we isolate ourselves, we’ll ultimately perish. So, the next time you receive a rejection of any kind, remember this: pain means you’re not as alone as you might think you are.

Read More

Are You Resilient?

are_you_resilient

Are you resilient? Do you sink or swim when faced with obstacles or stressful events? Say you grew up poor, I mean really poor, and all you had to eat for lunch each day at school were saltine cracker and butter sandwiches. Because you didn’t want your more well to do schoolmates to feel sorry for you, each time you crunched down on your cracker sandwich and licked the butter from the salted edges, you smiled. Despite your chronic adverse circumstances – low socioeconomic status – you worked hard in school. In fact you excelled, and you continue to do so: maybe at work or as a parent, or both. That’s resilience.

If you’ve never experienced a life challenge (unless you have lived in bubble wrap for all of your existence, I find this nearly impossible), you’ll never know whether or not you’re resilient. Adverse events can be chronic, as in the scenario I depicted above, or acute, as in witnessing a trauma or being a victim of an accident.

To better understand what makes us resilient, one researcher has looked at what are called “protective factors,” the particulars of individuals’ backgrounds, including personality, that play a role in their success, regardless of challenges. In follow-up to his research, his students identified factors that fell into two different groups: psychological makeup, disposition, or environmental influences in one group, and pure chance in the other. Another, larger study attempted to decipher the factors contributing to resiliency. Though, similar to the former study, luck played a role in some cases, psychological constitution was instrumental in the majority of situations. They might not have been geniuses, but the more resilient children possessed a healthy sense of self. They were willing to seek out new experiences, take chances, utilize the skills they had to be successful. One researcher describes these children as having an “internal locus of control,” meaning that they believed they, rather than outside circumstances, had control over their outcomes. They believed they were the authors of their life scripts.

As with most things though, resilience fluctuates. We’re human after all: if we’re burdened with one stressor after another – divorce, death, a job loss, injury – we tire and lose resilience (think of an overstretched rubber band). But the good news is: we just might be able to learn how to be resilient. Another researcher has discovered that individuals who did not bounce back so easily as children were able to develop resilient skills later in life, enabling them to prosper.

If we have the capacity to create our outcomes, then why not say resilience is an offshoot of perception, another human element within our control. As a clinical psychologist at Columbia University says, “Events are not traumatic until we experience them as traumatic.” Because we’re the ones who label the event as traumatic, we also have the capacity to re-label it as something else – simply as an experience, for instance. In this way we become more resilient. Of course, it’s not always that easy. Because we’re human, we agonize over this and that, lose sleep over this and that. It takes re-training the brain, taming our unwieldy thought patterns, tying our worries and fears into a constrictor knot. Though this hackneyed phrase may cause you to roll your eyes (Yeah, yeah, I’ve heard this, how many times now?), I’m going to share it with you anyway: If we expect something to become true, it will become true. If we focus on an adverse event as potentially harmful, we sink. If we focus on that same event as a challenge, we swim – and win.

 

Read More