Past Ten

Below is a piece I wrote at the urging of author, editor, and teacher Donald Quist. He asked me to contribute my reflections about how I’ve changed over the previous ten years to his project Past Ten in which various writers share similar recollections. As Donald says, the personal stories in Past Ten are a “testament to the transformative power of time and the human capacity to turn the unpredictable into art.”
Enjoy!

 

June 21, 2007

It’s 2:06 p.m. The summer solstice. I’m sitting at my desk at the Vermont Lung Association, where I work as an administrative assistant. I’m tapping at the computer keys, logging contributions from donors into an Excel spreadsheet longer than this day. My fingertips turn numb with boredom. My vision blurs from all the lines and rectangles and numbers. Bringg, bringg, bringg. My head thumps with each shrill ring of the telephone. I answer the call from a board member, and pencil his message on a sticky note to be passed on to the CEO. But when I hang up I’ve forgotten his name. Bob? Jim? Ted? My brain’s gas tank is near empty, and I want to lay my head on my desk, nap away this day. I want to sleep off my traumatic brain injury, close my eyes against a diagnosis that still paper cuts my tongue each time I speak it.

It’s been three years since my head smacked against the pavement when a car mowed me down, and no amount of sleep, or even the continuous sunlight on this day can burn off the smog obscuring my mind’s eye from seeing with any kind of mental clarity. I want this day to end. But I must keep tapping, plugging in numbers and names and dates. Filling up the rectangles of a spreadsheet is like filling in the white spaces of my unsure-where-I’m-going-life. How long I’ll pretend I’m happy working here in an office that smells like a basement, with plastic window blinds that clack each time artificial air from the vent gusts its cold breath into the room, I don’t know.

Of course, I’d rather be standing by a newborn’s crib side, where I stood as a nurse for fifteen years. Where I changed diapers, bottle-fed infants their mamas breast milk, cuddled preemies in cotton receiving blankets. But that was before the crash. Now my broken brain couldn’t bear the constant noise of a neonatal intensive care unit: wailing newborns, alarming monitors, dinging IV pumps. That’s why I am here, at this desk, where it’s mostly quiet and I’m asked only to accomplish one job at a time, like filling in rectangle after rectangle. Because it takes all of me to get through this day, I don’t have the mental energy to imagine the formula or function of my future. So I keep tapping.

The planet has raced around the sun ten times since that day. A decade. Another summer solstice has arrived, and I’m still tapping at the computer keys. I’ve figured out my life’s formula, or at least I think I have. With each keystroke, I fill up my own spreadsheet, one I created in 2010, when I enrolled in graduate school for an MFA in writing. That spreadsheet I have replaced with draft after draft of my memoir, with my favorite quotes from authors, blog posts to write, books to read, more books to write.

My brain still must work hard to hold onto names, though, and it still gets low gas mileage. Words and phrases skid away from me, emerge in anagrams, end in ellipses or in incomplete sentences. But I now look forward to the longest day of the year. The sun equals hope; as the days expand, it’s hope that keeps me from tearing up my draft and throwing it in the trash. Hope is the formula and function that carries me through the winter solstice, into the next decade.

Please visit Past Ten to read more inspiring stories.

 

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Brain Injury Awareness Month

brain injury awareness month

It’s March, the time of year when we begin to think about daffodils, Easter bunnies, Passover Seders, and, of course, day light savings time. The month of March reminds us to act on our thoughts, to effect change, to move forward; After all, March was named after Mars, the God of war. This doesn’t mean we should act through violence. Because Mars was also known as the God of agriculture and fertility, March is a time for new growth. How do we grow? Through awareness. So it logically follows that March has been designated as Brain Injury Awareness Month.

Every March, The Brain Injury Association of America leads the nation in observing Brain Injury Awareness Month by holding awareness campaigns. These campaigns aim to educate the public about an often misunderstood and misdiagnosed injury, including the incidences of brain injury, and ways in which we can help the injured and their families. It’s also an opportunity to work with communities on how to empower brain injury survivors without stigmatization.

To help you understand a little about brain injuries, here are some facts from the Brain Injury Association of America to get you started:

More than 2.5 million people in the U.S. sustain a TBI each year.

137 people die each day due to a TBI.

Most TBIs are due to falls.

5.3 million Americans live with disabilities as a result of a TBI.

Acquired brain injury (ABI) is an injury to the brain that is not congenital, hereditary, degenerative, or caused by birth trauma. Examples of causes include: electric shock, infections, near drowning, strokes, and tumors.

A TBI is a subset of ABI and is caused by trauma from an external source such as a bullet wound, falls, or car accidents.

To learn more about brain injuries, including the latest research, legislative briefs, and the social stigmas attached to having a brain injury, I encourage you read more by clicking on the following links:

Brain injury facts

Brain injury legislation

Brain injury awareness month

Differences between boys’ and girls’ brains

Inosine treatment for brain injuries may help motor function recovery

Scientists take big steps toward being able to repair brain injuries

To Share or Not to Share: Life after a Brain Injury

Marginalization of people with brain injuries

 

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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.

 

 

 

 

 

 

 

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“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.”

 

 

 

 

 

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Meet Nathalie Kelly: Daring Dreamers Radio

Nathalie Kelly

What is it like to live with a traumatic brain injury (TBI)? Maybe you feel as if you know longer know who you are. You might say that your identity has been “stripped” away, that your independence has been ripped from you. You feel utterly lost. In an interview with marketing consultant Angela Treat Lyon on Daring Dreamers Radio, this is exactly how Nathalie Kelly, a TBI survivor, describes how she felt in the days, months, and years after her sailboat toppled over during a storm on Lake Champlain in Vermont and smacked her in the head, leaving her bobbing in the cold water for forty minutes, until the coast guard arrived.

A brain injury advocate, writer, inspirational speaker, and board certified hypnotherapist, Nathalie speaks with eloquence and candor about her post-TBI road-blocks, set-backs, growth-spurts, and more. The motto of Daring Dreamers Radio is “to dare you to live free, inspired, and in constant delight.” And that is precisely what Nathalie does in the interview: She has come to understand that living with a TBI means learning to accept that you are “perfectly imperfect,” and, though our culture frowns upon anything less than perfection, she “dares” us to embrace it, to “embrace vulnerability,” to let yourself be the person you are now, to shed all expectations of others. “That’s living an authentic life,” Nathalie says.

To be inspired and awakened and free, I dare you to listen to Nathalie’s interview at Daring Dreamers Radio.

 

 

 

 

 

 

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Compassion Fatigue

You’ve heard of “burnout,” right? Your work environment is making you miserable, so miserable that you feel unfulfilled, depleted of energy, stripped of all motivation to effect change in the workplace. If you’re a healthcare professional, undoubtedly, you know all too well about burnout. But then there’s “compassion fatigue.” While individuals working in any kind of job setting can experience burnout, compassion fatigue is unique to those exposed to trauma while working in a helping profession: nurses, firefighters, police. Because you’re in the helping profession, you feel the onus is on you to save peoples’ lives, to make them better, to alleviate their pain, so you sign up for extra shifts, and, if you’re a nurse, offer to take care of the sickest patients. But what happens when your patients have little, or no family support, or are constantly ringing the call bell, making demands (get me water, I need more pain meds, I need something to help me sleep)? You feel like Sisyphus – no matter how many times you push the boulder up the hill, it keeps rolling back down into your weakened arms. You’re worn down, irritable, angry. That’s compassion fatigue, when you can no longer muster the sympathy to care for your patients because you’ve been exposed to the same kinds of patients again and again, and have answered an uncountable number of call-bell dings, but the bells keep dinging, and you want to keep helping, but, at the same time, you want to run.

It’s worth noting, however, that compassion fatigue doesn’t necessarily mean individuals experiencing it lack compassion, not at all. They still care about their patients. Instead, as a nursing professor at the College of Nursing at University of Arizona says, compassion fatigue is more like feeling too “full,” and even suggests a different name for it: “emotional saturation.”

Not only are healthcare professionals at risk for compassion fatigue, though, family members caring for loved ones with, say, a traumatic brain injury or dementia, are at risk too. Even those who hear about another’s traumatic experience over and over again are affected. I bring these scenarios into the mix because, sadly enough, I suffered from compassion fatigue when I worked tirelessly to navigate my father’s emotional swings, and, as he slipped into Alzheimer’s, made sure he was safe at home because he had insisted he never be put in a nursing home. And I’m witnessing compassion fatigue again, as my husband and his siblings stumble then pick themselves each day, determined to keep their aging mother safe from the ravages of dementia.

But it is possible to care too much, so much that it hurts. When I say hurt, I mean really hurt, as in traumatized hurt. Being pre-occupied with others’ suffering can cause “secondary traumatic stress” for the helping individual. It’s not unusual to experiences symptoms of post-traumatic stress disorder: anxiety, hyper-vigilance, irritability, impatience, withdrawal, poor concentration, sleep disturbance, nightmares, the list goes on.

What’s the cure for compassion fatigue? Boundaries and self-care. In other words, set limits, say no even when you want to say yes, remind yourself to take time out, meditate, go for a walk, keep a journal, draw, listen to your favorite music, dance, do yoga, take a bath, read a novel, watch a funny movie. Watch the sun set. Watch the sun rise.

For more resources on how to evaluate whether or not you have compassion fatigue and how to prevent/treat it, go to compassion fatigue and healthy caregiving.

 

 

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