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

This 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.

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

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.”

I like to believe that I’m too young to think about who will take care of me when I’m old and frail and can no longer prepare my own meals, bathe myself, or even tie my own shoes. But my father’s personal narrative has taught me to plan ahead: I now have an advance directive, and hope to have enough money set aside for long-term care costs, like an assisted living, or, do I dare say it? Nursing home. A place that most of us hope to avoid. We remind our loved ones, over and over, “Never, ever put me in a nursing home.”

My father spoke those exact words to me, time and again, in the years before he was diagnosed with Alzheimer’s, at age seventy-one, though he punctuated them with what might as well have been an exclamation point: “If you do, I won’t live a year.”
I wanted to guarantee my father that I would never “put” him in a nursing home. As his health care proxy (HCP), I did all I could to follow through with his documented wishes: “It’s my expressed desire not to be placed in an assisted living facility, or nursing home, or any other institutionalized living arrangement.” During the early phases of my father’s Alzheimer’s, he was able to stay at home with a paid companion a few hours a week. But as his disease progressed, he required full time care, twenty-four hours a day, seven days a week.

He didn’t have a wife to care for him. I live in Vermont with my husband, my older sister lives in California, and my younger brother and his wife have demanding jobs, with two young children in tow. None of us could have easily packed away our lives and moved in with our father; we had to hire a home care agency. But no way could the three of us afford the exorbitant cost of upwards of $14,000 a month for trained home care staff and case management services. This is when we cashed in on my father’s foresight: Because he’s a perennial over thinker, and could afford it, he had purchased long-term care insurance (LTC) – a policy that covers personal care in the home or institutional setting – years earlier. We managed, barely though, to keep my father at home for three years. Yes, the inevitable happened, and he’s been in a nursing home for a year now – a nice nursing home with attentive staff, decent food, lots of activities, a flower-bordered patio, and a pastel-painted dining room with tall windows.

But what happens to those who can’t afford the prohibitive price for long-term care insurance, or the out-of pocket costs for home care services – services typically not covered by insurance – or the fees for a nursing home? In the U.S, with the older population – people sixty-five and older – at nearly close to fifty million, which is predicted to nearly double to an eye-popping ninety eight million by 2060, I imagine those kinds of questions are being asked at a lot of dinner tables. My husband, his siblings, and I, ask one another those questions as we scramble to piece together a plan to care for his eighty-eight-year-old mother, who is blind in one eye and has dementia. Her dementia is at a stage where she doesn’t need to be in a nursing home or an assisted living facility. But she no longer drives, and needs assistance preparing some meals and doing household tasks, she is also at high risk for falling. But she doesn’t have the funds to pay for home care. That leaves her with one option left: family. For now, one of her sons, who recently resigned from his job, is living with her full-time. But that’s not sustainable, financially or emotionally, for her son. Fortunately, my husband comes from a large family, and his siblings are willing to sign up for shifts.

Here’s why having family available to help is a saving grace: Taking into account three types of care – assisted living, independent living, and memory care – the average monthly cost in the U.S. is nearly $4,000. The Northeast is the most expensive in the nation: just over $5,000 a month. The average daily cost of nursing home care runs about $250 a day for a private room, more than $90,000 a year. But nursing home care is a whole different animal from other types of elder care, and this is where it gets confusing: If you, or your loved one, need nursing home services on a temporary basis – due to an illness or injury – and you have Medicare, great, the government will pick up your tab, but, of course, only if certain requirements are met. And they’ll pay the full cost for only so long: exactly twenty days. For the next eighty days, you get to pitch in: about $130 a day. On day one hundred, Medicare is no longer an option. And they don’t pay for long-term nursing home care. If you can’t afford LTC, and you don’t have Medigap – a non-government insurance plan – and are not a veteran, that’s when you dig deep into your pockets, cash in life insurance policies, reach out to family, praying you haven’t done anything to offend them, or, to qualify for Medicaid, sell just about every last possession you own, including your house.

That’s why procrastination isn’t your best friend. Where do I start? You might ask. A Place for Mom, the largest senior living referral service in the U.S., offers tips on how to prepare for the kind of care you might need as you age. If you believe you’re immune to aging, even after reading this post, I should share with you what James Salter, author of All That Is , has to say: “Age doesn’t arrive slowly, it comes in a rush … You are the same and still the same and suddenly one morning two distinct lines, ineradicable, have appeared at the corners of your mouth.”

Since I can’t bear ending on a minor key, I’ll leave you with this: You have a voice, so don’t be afraid to use it. Speak out, share your concerns about the rising costs of long-term care, even if your voice is out of tune: As Joni Mitchell says, “The more out of tune voices the better.”

This above post was originally published on June 3, 2016 at Strategy Health Care