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

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

Blueberries and Post-Traumatic Stress Disorder

blueberries_and_ptsd

What did you eat for breakfast this morning? I had yogurt with blueberries, lots of blueberries. Akin to gulping down a mug of coffee, these plump babes are part of my morning routine. The sweet burst on my tongue makes me smile and, let’s admit, smiles are more attractive than frowns. If I miss a day munching on an overflowing cup of blueberries, my mojo is all messed up. Thank goodness for blueberries. Why? Not only are they packed with anti-inflammatory, heart-protective, brain-healing extracts (see earlier blog post), they are the anti-depressant of the future.

Based on animal studies, researchers at Louisiana State University’s School of Veterinary Medicine suggest that blueberries may help those suffering from post-traumatic stress disorder. With the rise in PTSD diagnoses, this is good news, particularly since suicide is a very real risk among sufferers.

When researchers induced PTSD-like symptoms in rats, they found that, in comparison to “normal” rats, they had unusually low levels of SKA2, a gene expressed at unusually low levels in people who have committed suicide. The PTSD rates were fed a blueberry-rich diet – as much as two cups – and the results showed increased levels of SKA2 compared to the non-PTSD rats fed a regular diet. The SKA2 study came in follow-up to an earlier one in which blueberry-fed rats showed increased levels of serotonin, the saving grace brain chemical that makes us happy. Researchers plan to further evaluate the link between blueberries and SKA2, with the hope of finding a single pathway by which blueberries can relive both depression and suicidal behaviors.

In the meantime, since blueberries are harmless (unless they are sprayed with chemicals even a veteran linguist can’t pronounce), why not feed your brain a cup or two? And blueberries just might be better than taking drugs: anti-depressants, particularly Serotonin Re-uptake Inhibitors (SSRIs), used to treat PTSD are not always successful. Paradoxically enough, they have been linked to increased suicide tendencies in some people.

Hmm … if two cups of blueberries a day equals, say, twenty milligrams of an SSRI a day, and there are three hundred sixty-five days in a year, if my math is correct, that comes to seven thousand three hundred milligrams of said SSRI versus seven hundred thirty cups of blueberries. Pass the blueberries please.

Read More

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.

 

 

Read More

Feerless

feerless

Do you watch Game of Thrones, Sons of Anarchy, Boardwalk Empire, or any show of the kind that involves blood, war, sexual assaults, car crashes, pedestrians being flung across the road by a runaway vehicle ? If you have post-traumatic stress disorder (PTSD), and react at all like I do when watching those kinds of scenes – head buried into a pillow, hands shooting up to your face to cover your eyes from the gore and violence, fingers stuffed in your ears to block out the screams and sounds of breaking glass – you’ve probably asked yourself, “Why am I putting myself through this? Why don’t I just stop watching this show?” You keep watching because  you are attached to a character, or you must know what happens to Arya Stark or Jimmy Darmody. But you wish there was some kind of warning signal – a flashing caution light, a wave of a hand, anything – to prepare you for, say, an upcoming decapitation or animal dissection. Well, your wish has come true. The signal you have been hoping for is called Feerless, a Google Chrome extension that relies on crowd-sourced data to identify emotionally difficult-to-watch scenes in television shows and movies on Netflix.

Feerless was developed by Danielle Leong, a sexual assault survivor who suffers from PTSD. While watching Sons of Anarchy, a graphic rape scene, which she was wholly unprepared for, triggered panic attacks and flashbacks for Danielle. As she says in her Feerless demonstration video, “I was completely in misery for three days.” If she had been warned of that upcoming scene, she could have looked away from the screen, shut off the television or computer, or fast-forwarded past the scene. She knew she had to do something, create some kind of trigger warning for others suffering from PTSD. A software engineer, Danielle had the answer, and the technical know-how to develop Feerless.

Users download the app, then, while watching shows or movies, they flag disturbing scenes. Once those scenes are flagged, a blue bubble appears at the bottom right hand side of the screen as a warning. The nice thing about the bubble is that it’s not intrusive; yet it’s present enough to catch one’s attention. And it pops up pre-emptively, several seconds before the troublesome scene appears, allowing viewers time to look away, or not. Because Feerless relies on crowd-sourcing, numbers matter. For the blue bubble to appear, we all need to participate: the more we use the app, and report the scenes that trigger anxiety, and/or sensory-related reminders of our past traumas, the more we all benefit.

 

 

Read More

What Not to Say to Someone with a Brain Injury

what_not _to_ask_ someone_with_a_tbi

At the Vermont Brain Injury Conference last fall, a TBI survivor, who sustained his injury years ago, spoke to an audience of nearly four hundred people. He didn’t have any visible scars, difficulty with speech, or an obvious limp to his gait. He spoke clearly and eloquently, and, in fact, was back in school pursuing a college degree. Because he appears healthy and strong, he explained how those without a TBI often don’t know what to say to him when they learn that he sustained a TBI. I recall him saying to the audience something like, “I’m me.” In other words, he was affirming his TBI, not from the perspective of a victim, but from the perspective of an individual who has accepted his disability, who has learned to cope with the challenges he faces each day, and who wants others to know that, though he looks “normal,” he cannot do everything others can do.

He left me thinking, thinking a lot, about how confusing a TBI is for those who do not have one, especially if they cannot see or hear it – the scars, the limp, the slowed speech. We all mean well (or I like to think so), and when we meet someone with a TBI, or any kind of disability, it’s natural to want to offer an opinion or suggestion, even if it’s unsolicited. I’ve done it myself, and I have a TBI. A few months ago, when walking on the treadmill in the gym where I live, a middle-aged woman with a cane shuffled in, one foot dragging along the carpet. The arm on the same side of the dragging foot hung limp. Her speech was slurred when she said hello. I assumed she had had a stroke. I smiled at her and introduced myself. I watched her struggle to lift herself up onto the seat of the stationary bike, and suggested that she might want to try the recumbent bike. She responded with a soft voice, saying that she had trouble adjusting the seat of the recumbent bike. I offered to help her, but she said she could manage herself. “Are you sure?” I asked. “Yeah, I’ll figure it out.” She did. Though I was being helpful, I wasn’t. She needed to figure out, on her own, how to adjust the seat. If she needed my help, she would have asked me.

While we may mean well when interacting with someone who has an invisible TBI, or any invisible disability, there are an untold number of statements we may find ourselves saying (some of them people have said to me), that are not helpful, but hurtful. It can be said that such statements are not only meant as an attempt to be helpful, but also as a diversion from facing our own morbidity, and mortality. For instance, it’s easier to say to someone with a TBI, “But you look great,” than to say nothing at all, which would leave too much space in your mind for thoughts of your own vulnerability.

To learn what not to say to people with a TBI, go to Brainline. This same site offers other communication strategies when interacting with TBI survivors, including those with post-traumatic stress disorder. But please know that by sharing this list, my intention is not to be prescriptive or didactic. Dare I say it … it’s my way of making a suggestion. (Maybe I’m not being very helpful, but I can only hope so.)

Thanks for considering these tips!

 

 

Read More