New Normal

Photo of Amy and Spencer, courtesy of Amy Roost.

Photo of Amy and Spencer, courtesy of Amy Roost.

October 28, 2016

Yet another woman has accused Donald Trump of touching her inappropriately. He dismisses her as a “porn star” and says sarcastically, “Oh, I’m sure she’s never been grabbed before.” At a rally, Trump revels in the news that the F.B.I. is reopening Hillary’s private email server investigation. “I think this changes everything” he tells the jeering crowd shouting “Lock her up! Lock her up!”

October 31, 2016

I spend the day readying the condo and burning off nervous energy in anticipation of my son’s arrival. I place Post-it notes everywhere I can think of. The Post-it on the kitchen cupboard reads “bowls and plates”. The drawer below is labeled “silverware.” The toaster is simply “toaster.” I roll up the throw rug in the entryway afraid it might pose a tripping hazard. I hang a whiteboard and calendar in Spencer’s old bedroom while awaiting delivery of the hospital bed. Then I remember the doctor’s advice that Spencer avoid alcohol while recovering from his strokes and subsequent brain surgeries. I empty the refrigerator of beer and wine so as not to present a temptation and while hiding it in the storage locker beneath the stairs, I decide that as an act of solidarity I too will refrain from drinking.

A new normal is about to begin. One outside the protective womb of the hospital where I’ve spent forty-eight out of fifty-six days at Spencer’s bedside waiting, tending, and advocating.

I’m relieved he’s been discharged, and yet also terrified to think that I’m about to assume the roles of doctor, nurse, and therapist, in addition to full-time cheerleader. I haven’t yet managed to gather my own inner strength to overcome the shocks to my body and psyche. How will I manage to gather his?

I make pumpkin spice whoopie pies, a Halloween tradition in our family. Perhaps tasting these will jog Spencer’s memory of Halloweens past. Like the the year he was Buzz to brother Stuart’s Woody. Or the time he sat patiently while I painted his face to look like Gene Simmons of Kiss. Maybe he’ll be reminded of the annual pumpkin carving parties we hosted in our driveway. Surely he’ll recall the carving party that was canceled on the day we were evacuated ahead of the wildfires clawing their way toward our backyard.

My husband, Ain, arrives home from work followed in short order by his daughter Lindsey and her two children. Matty is dressed as The Incredible Hulk, Baby Grace, a tiny pea-in-a-pod. I find an old t-shirt and write NASTY across it with a black Sharpie, don a witch’s hat, and we all head out for a quick round of Trick-or-Treating prior to Spencer’s arrival.

Finally, Spencer is home along with Stuart—who has accompanied Spencer on the flight from Seattle. My two sons, one tall and athletic, the other short and brainy, have both survived multiple brain surgeries. They each grab a whoopee pie, plop down on the sofa good-naturedly compare the scars across their respective skulls to see whose is longer. Brain malformations—etiologies unknown and, according to doctors, unrelated—and nearly dying have brought these two very different brothers closer.

My personal cheering squad, Ain and Lindsey, pull up chairs and Matty and Grace—two sources of joy during what has been an otherwise joyless time—spread their candy out on the floor. I sit down for the first time all day look around the room and contentedly bite into my own pie.

November 1, 2016

I feel a sense of generalized anxiety coming on. Maybe it’s the new normal. Or maybe it’s the news that Hillary’s lead in election polls is shrinking following the FBI’s reopening of the email investigation. Plus there are the reports from early-voting sites that African-American turnout is down sixteen percent while white turnout is up fifteen percent. I watch pundits on CNN speculate as to the reason for this given the Clintons longstanding popularity among black voters. One points to the “almost surgical” curtailment of early-voting sites in predominantly black precincts. Another blames voter ID laws. A third speculates about the cumulative effect of social media attacks on Clinton. I pray Hispanics, whose undocumented brethren Trump has maligned as ‘murderers’ and ‘rapists,’ will bridge the gap come Election Day.

November 2, 2016

The director of the brain rehabilitation center calls to inform me that Spencer qualifies for their outpatient day program. The final hurdle is getting his health insurer to authorize the recommended treatment plan.

A United Health Care representative confirms over the phone that Spencer’s coverage allows him only forty hours of rehab per calendar year. I explain how and why this is insufficient, and I can tell by her sympathetic tone of voice that that she has done the math. She understands that forty hours translates to less than three weeks of rehab for Spencer who is seen by three therapists a day. Meanwhile the doctors are recommending six months—or over five hundren hours—of rehab if he’s to have any chance of being a fully functioning member of society again. I want to hang up on her but instead thank her for her time and move on to Plan B—finding Spencer a new healthcare plan for the upcoming year. 

Meanwhile, the first hospital bill arrives in the mail. It covers only the first day of Spencer’s care which includes the air lift from Bellingham to Seattle and totals $10,270.

Amy Roost and her son Spencer.


November 3, 2016

Trump is praised by members of the media for “disavowing” the support of the former K.K.K. leader David Duke. Strange what passes for presidential material these days. The Times reports that Trump’s income isn’t what he says it is. The story is hard to follow. Which is, I suppose, why no one does.

He flies from rally to rally aboard his gold-plated jet announcing to anyone who will listen how much the crowds adore him. This manboy-who-would-be president has a seemingly bottomless need for attention.

I keep checking my newsfeed hoping for something—anything—positive to mitigate my sense of impending doom.

I’m buoyed by an article describing how narrow Trump’s path to victory is; Hillary could lose Florida, North Carolina and Ohio and still beat him.

November 5, 2016

Some mornings when I wake, it takes a few seconds before I remember what happened and how I arrived to the world I’m living in now. Once I do remember, I stare at the ceiling and reist getting out of bed. But I know that I must because Spencer can’t mange on his own. He might get so far as taking the eggs out of the refrigerator, but then forget why. I need to be there for him and so I rise.

I strain to read the fine print of the health insurance options the broker has emailed. After compiling a comparison matrix, I chose a plan for my twenty-two-year old that comes with a $605 per month price tag. But it’s worth it because the new policy has no cap on rehab visits.

November 8, 2016 (Election Day)

Dear Donald Trump,

There are a few last things I’d like to say as voters show you the door that I hope hits you on the way out:

You have been terrible for our country and I look forward to healing from the wounds you’ve inflicted.

You know that expression “You give [blank] a bad name.” Well I don’t know how you did it, but you somehow managed to give men, white people, Americans, New Yorkers, moguls, and douchebags a bad name. The bigger you lose tonight, the happier I’ll be. You are a scab, a wart, a boil on our nation’s tough hide and I thank God the sensible people of this country will finally excise you.

November 9, 2016

For the second time in ten days, I’m faced with a new normal. Donald Trump is the president-elect.

While waiting for the coffee to brew, I glance at Facebook on my phone. The first thing I see are celebratory remarks about Trump’s victory from a Christian fundamentalist high school friend who rarely posts to social media. Each post ends with the words “Praise be to God,” as if God somehow ordained the election results. I unfriend her.

Next, I come across a comment by a friend of my stepson’s, a white male millennial. It reads, “Apparently lots of women like having their pussies grabbed.” I respond:

Dear White Men,

Seriously, for just one day, shut the fu*k up.

Take some time to reflect, “bros," and have a good LONG look in the mirror.

What have you done in your life to set women back? Or keep them from rising up? Have you too stereotyped women in your lifetime? Have you consciously or unconsciously objectified women and contributed to voters having such low a regard for women that they would elect a race-baiting, misogynistic, liar to be president?

Later in the morning, Stuart texts me photos of his college library where overnight someone spray-painted swastikas on the bathroom walls.

I can’t take it. I also can’t look away.

November 10, 2016

I listen to Trump’s press conference on my way home from dropping Spencer at rehab. He mentions that he’s considering keeping two provisions of the Affordable Care Act: the prohibition against insurers denying coverage because of a patient’s pre-existing condition, a provision both Stuart and Spencer will depend on the rest of their lives; and the one that allows parents to keep their children on their insurance plans until they turn twenty-six, which currently applies to both my sons. Hearing that Trump will preserve the key components of Obamacare is a massive relief. Then a commentator points out that Trump’s plan will never work. Without a mandate for everyone to purchase health insurance, the pre-existing condition provision would send insurance companies into a deathroll.

I’ve gone through life blithely assuming I could handle anything thrown my way. Now that I’m forced to prove it, I’m not sure I can. My reserves are all used up. I just want someone to hug me. Hold my hand. Leave flowers on my doorstep. Bring me a hot roast beef sandwich with extra cheese, or simply text me a funny cat video.

I’ve suffered a crack or two, or three, and I’m afraid I won’t be able to hold myself together much longer.

Spencer, who knows nothing of my gossamer-thin nerves, arrives home depressed. Who can blame him? One day he’s working his way toward a college degree in engineering, mountain biking and snowboarding on the weekends, and and the next day he’s using a walker and can’t find his way to take out the trash. I suggest we go to the beach and let nature work its magic. As we amble north along the shoreline, mist settles on our matching curls, salt rims our lips, and the rhythm of the waves steadies our breathing. When the stars come out, we turn back for home ready to once again face reality.

A dear friend calls to check up on me. I confide, “I’m barely hanging on.” She, a recovering alcoholic, offers me some ironic and excellent advice, “It’s okay for you to have a glass of wine. Spencer would want you to.”

I cuddle with Ain apologizing for my recent testiness and for having triaged his needs into obscurity these past several months. He takes my hand, kisses it, and forgives me. I pour that glass of wine and savor it in small sips. Dinner consists of a warm baguette with a wedge of brie cheese. I read for a while, a quiet novel by Wendell Berry, then head to bed early because I’m tired and because there is nothing noble or pretty about an exhausted martyr.

December 9, 2016

Trump picks a climate-change denier to head the EPA. His nominee for Labor Secretary opposes minimum wage hikes; and the incoming Treasury Secretary is a Goldman Sachs alumni who is best known for aggressively foreclosing on home loans.

Meanwhile, speaking at a “victory rally,” Trump stokes the flames of fear calling the stabbing attack by a refugee at Ohio State University “yet one more tragic reminder that immigration security is now national security.”

Elections have consequences.

December 13, 2016

I’m awakened from a fitful sleep by the Supermoon’s penetrating reflection off the ocean’s surface. I stare at the spectacle outside my bedroom window and debate whether to wake Spencer to show him too. My mother’s voice reasons, He’s exhausted from rehab. Let him sleep. My cynic’s voice asks, He won’t remember it, so why bother? Then my optimist’s voice interrupts, Whoa, Nelly! That’s no way to think! Resolved, I go downstairs and rouse him. Together, we watch from the living room balcony as the moon slides into the ocean’s cradle. Satisfied and sleepy, we each return to our beds.

The next morning as Spencer stands at the stove turning the bacon, I ask, “Do you remember my waking you?”

After a pause he answers, “Yes.”

“Do you remember why?”

He thinks for a moment longer before asking, “The moon?”

That’s how we interact these days, going over events again and again, point by point, trying to trigger the memory. But the image of the Supermoon setting has so imprinted itself on Spencer’s healing brain he needs only the tiniest prompt to recall it. No matter how sluggish he is at rehab today, I feel vindicated for having wakened him early for some nature therapy.

December 15, 2016

I suspend a self-imposed news and Facebook diet just long enough to hear Trump dismiss as “ridiculous” claims by the US intelligence agencies that Russia intervened in the election to help him win the White House. Also, Kanye West paid a visit to Trump Tower. I return to my diet.

December 23, 2016

Dear Spencer,

Happy Golden Birthday—twenty-three on the 23rd! I’m tempted to talk about how this year has sucked something awful for you and how I hope for a much better year ahead. Instead I want to talk about what a truly amazing year it has been. How the trauma you’ve endured has become the incubator for your greatest strengths.

Because of your injury you are more compassionate. You see people you would not have noticed before and consider another’s circumstance with love rather than judgment.

You have learned that life occurs in the present moment. The experience of joy happens in the present moment. Your perception and experience of connection with something that is greater than yourself occurs in the present moment.

You’ve proven to yourself and others that you have the courage and the strength to overcome your injury and fight your way back. With that knowledge to draw upon it is unlikely there will ever again be a challenge that you don’t have the courage and strength to fight.

Having come so close to losing everything, you will now give up considering if a cup is half full or half empty and simply be thankful for having a cup to drink from.

You understand that what matters most is people, not things.

You understand that the right perspective makes the impossible possible.

You learned that the try is everything. The try is you saying to your brain, ‘hey, I value this connection and I want it to happen.’ You may have to try, try, and try again with no results for a thousand times before you get even an inkling of a result but you know that if you don’t try, it may never happen.

Most importantly, you understand what I knew the instant I held you in my arms twenty-three years ago today, that life is a gift to be cherished.

And you, Spencer, are a gift to so many who have watched on this past year, teaching us all through your actions, your spirit, your will, and your grit what this spin on the big blue marble is all about.

You are my hero, my teacher, my friend, my son.



January 6, 2017

The director of national intelligence releases a declassified report that concludes Russia interfered in the 2016 election. Trump responds to the findings on Twitter maintaining that Russian interference did not affect the election result, and claiming he has “nothing to do with Russia”.

January 24, 2017

At a family conference today with Spencer’s care team, we all agree that Spencer’s affect is improving and he’s more self aware, especially of how long this dang recovery process is taking. The most difficult moment of the meeting is hearing the case manager say the words I’ve been defending against for months: “Spencer probably won’t ever be the same.” In other words, Spencer 2.0 is here to stay.

It’s a struggle letting go of the old Spencer and accepting the new.

Part of me is not ready to let go because I haven’t finished grieving while another part of me recognizes the need to move into the present and deal with what is.

Later, when I pick Spencer up at rehab, I ask, as I do every day on our drive home, “What did you have for lunch today?”

“Chicken tenders and a cookie,” he answers.

I pull the car over to the curb and begin to cry.

“What’s wrong mom?”

“Today is the first day you’ve been able to answer that question.”

Spencer breaks into a crooked smile. “Well there is that,” he says. “Even if we do have Donald Trump for president.”

This work is excerpted from Fury: Women’s Lived Experiences During the Trump Era, with permission from Regal House Publishing.

You Might Also Like:

If you like this article, please share it! Your clicks keep us alive!