Remembering Who You Are

Sarah Kishpaugh, for BrainLine
Remembering Who You Are

In grade school, I used to fake-trip to make people laugh. When I wasn’t clowning, I was blabbing, often sent to my bedroom for what my parents called, “arguing with the rocks.” Overreacting was a trait I carried into my relationships, so when I met Miles, and he found my hyperbolic style amusing, I knew he was the one.

In 2007, Miles, on the job as a tree crew lead, was struck in the forehead by an 80-pound branch, after a tree toppled in a way it wasn’t supposed to. There was nothing funny about that phone call, or the months afterward, when we all suffered the unknown. My funny bone shattered as I zapped into high-alert mode to take care of our children, finances, and Miles’ well being.

After surgery and rehabilitation, the message from his medical team was that it was my job to keep him safe. Miles was not to drive. Under no circumstance should he consume alcohol. He must stay off ladders, and not use heavy equipment. A young intern and I discussed what would happen, as she removed the stints from his nose.

 “Do you have a set of full body armor at home?” she asked me.

I’d seen so much weird stuff in the hospital that it was hard for me to tell if she was kidding.

“Umm, no,” I said. “Why?”

 “For his protection,” she said. “He can’t afford a second blunt trauma.”

 “What do you mean?”

She was finished with her mini-surgery, and Miles lay with his head on the pillow, groaning. She explained how after a first head injury, people — because they often lack judgment — are at a higher risk of having another. Repetitive concussions increase chances for severe sleep, anger, and seizure disorders. From what I was hearing, there were potentially devastating issues at stake, preventable so long as I was a good nurse.

 “In a couple of years, you can make him buy you some diamonds,” she said. “You will have earned them.”

My inner clown could appreciate her being lighthearted, but the warning freaked me out. I imagined hiding Miles’ car keys and lecturing his friends not to share their beer. Nobody understood. My husband was stubborn. I was an accomplished mom, but had no business as caregiver to an alpha male.

A few months after the accident, I came home to him cleaning the gutters on the rooftop. Our son, who was two, was watching from the deck. I immediately began hyperventilating.

 “What are you doing?” I said.

 “What does it look like?” 

 “You can’t be on the roof! And you should be watching Willie!”

“Who’s gonna clean the gutters, you?”

I noticed he wasn’t wearing a hardhat. He grunted as he climbed down from the ledge.

“You could have at least waited until I got home,” I said. 

“I don’t need a supervisor.”

The next month, when he snuck out with the car during a snowstorm, I held my breath waiting for an officer to knock on my door declaring him dead in a ditch. A friend finally called, saying Miles had shown up at her house. She described him as being “satisfied with himself” for rallying down their steep driveway in four-wheel drive.

After that we had a talk. I told him I couldn’t be by his bedside if he hurt himself doing something dumb. His actions felt reckless in a time when I panicked every time the phone rang. It may have been harsh, but I told him if he wanted me around, he’d have to take his recovery seriously.

After that I lost interest in socializing with friends and family. I was obsessed with his getting better fast, so we could return to our normal life. I started losing sleep, and acting rude at work. Nothing struck me as funny, and I was weary of our future. I recognized there was a piece of me that had been damaged, too.

“I think I might have PTSD,” I told Miles.

I was getting used to his silence, and accessed my former button-pusher self to press on.

“Don’t you want to know why?” I asked.

“Sure,” he said in his post-injury dulled tone.

 “Because I feel like I’m living in fear.”

He laughed, but not in the easy chuckling style I remembered. His affect had become numb, slightly menacing.

 “What is there to fear?”

I wanted to scream at him: “You almost died! We’ve been to hell and back!” Then he surprised me with a question:

 “Don’t soldiers get PTSD?”

He was probably right. I couldn’t have a syndrome. Still, loving friends and family noticed my decline, and urged me to see a therapist. On her couch, I puffed up about what a miracle my husband’s recovery had been. After a few more sessions she broke me, and I cried in honesty, revealing the burden being responsible for a grown man.

“I think you may have mild PTSD,” she said.

“I don’t think so,” I said. I told her we’d been lucky and that he was getting better. I explained we didn’t want the injuries to define us.

She responded that sometimes it takes six months for symptoms to kick in, and that even a slight case needs attention. She told me I’d been holding our family up in survival mode and that whether I liked it or not, our changes did define me. Then she gave me a prescription for anti-depressants.

“Think of it as a temporary fix for a temporary problem,” she said.

The meds helped me stop ruminating over the unknown. I also learned about how positive self-talk could help me live in the moment. I tried to heed her advice to act like a scientist and notice negative thoughts, and then send them flying.

I absorbed two messages. The first was that Miles’ recovery was my responsibility, and the second was that I should be taking care of myself. But was the second really feasible? My personal interests and goals took a backseat, which contributed to my desperation. A friend called me out once, when I was ticking off my outrageous to-do list.

“Sarah,” she said. “The real tragedy in this would be thinking you had to be perfect.”

I’ve met people who, because of a severe TBI, can’t sustain a traditional marriage. It’s impossible to know why one survivor makes strides when another doesn’t. When Miles got hurt, he was young, healthy, and motivated to get better. It’s been almost six years, and he can finally work a full day. Best of all, he is recovering his sense of compassion.

I still jump to thinking worst-case scenario if I’m not careful. And sometimes, when I can’t reach Miles by phone and he’s with the kids, I panic. But lately I’m less afraid to join the world, and I’m accessing my childhood pontificator. I’m writing essays and stories about living through TBI. The other day Miles encouraged me as I whined about how hard it is to tell these true stories.

“Brain injury is not a very fun topic to read about,” I said.

“If anyone can make it work, you can.”

“But what if they hate it?”

“Then try again.”

“But "• ”

“But nothing. Anything good takes practice.”

This went on until he told me I was being annoying. I told him I’d start with an essay for caregivers.

“What will it be about?” he asked.

I told him I wanted to write what I longed to hear when I’d felt so lonely during those darks days of unknown.

I’d write that a caregiver’s work is heroic. It’s precisely because your loved one needs you that you must hold on to whatever it is that makes you feel alive. I’d write that when the emergency subsides, to remember yourself. I’d write that if you love to run, run. If you love to sing, sing. Whatever it is, do it. I’d write that maybe one day you can laugh about some of what’s happened, but for now, knowing who you are "• that’s as serious as it gets.

Written exclusively for BrainLine by Sarah Kishpaugh.

Read Sarah's essay, "Love, Light, Strength (and Glue)," published as a "Modern Love" essay in the 2 May 2013 edition of the New York Times Magazine.

Posted on BrainLine June 10, 2013.

Comments (11)

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so true. i wish i had read this five years ago when my husband first had his injury. <3

I applaud you for seeking help when you needed it. It helped prevent you and later your family from being the second (and more) victims of a terrible accident. I'm a PT treating clients with TBI. I've often asked spouses/caregivers to help clients stay safe. It is NOT however YOUR JOB to KEEP HIM SAFE or MAKE him better. It's enough to do what you can when you can and do your best. Congratulations for all you've done and Thank You for sharing your story.
Sarah, you are awesome. I am right there with you. Thank you for writing.
PTSD is probably much more common for TBI caregivers than people realize. I was told the same thing, and felt odd about telling other people I was told I had PTSD and hypervigilance problems...I was always trying to be sure everyone in the family was safe...Kudos to you for getting the word out so more caregivers will look into this and ask for help. Wonderful writing, loved your NY Times essay too!
Sarah, thank you for writing this. What you have been through is unimaginable, but I began thinking, as I read it, that your advice about getting through applies to life in general, if you're going through hard times or loss or life's ups and downs in general. It's great advice and I needed to hear it today. Bless you and Miles and I hope you all continue to heal.

Hi Sarah, you just made the day of another TBI survivor wife's by writing that essay. My husband had a car accident on a mission trip in central Kalimantan less than a year ago that caused him to have 5 surgeries and now not able to use the left side of his body. What you wrote is so similar to what i am undergoing now...though we are half the world apart and there is no support group for TBI here. reading articles and essays in brainline makes me think to start one myself here in Indonesia.....hhhmmm...maybe i should. Again 2 thumbs up for all the hard work and faithfulness you have towards your husband and family. GBU!

I wrote to you (email 5/20) after I read your NYTimes piece, and I have found this wonderful writing on a day when I needed to read it. My girlfriend is in the hospital again, this time having an ostomy reversal. I felt I had PTSD after the last surgery, which was an emergency surgery due to a perforated colon, which included 4 days in the ICU. It's hard being back in the hospital again, the pain, then the eventual amount of meds which - because she has a high pain med tolerance due to a somewhat unrelated condition - make her hard to deal with. She becomes argumentative and impossible to please. And the worrying. I have to cook for her or she'll eat bad food. It gets frustrating, and when you wrote about how your husband would take risks it felt familiar - but I guess at least I get to enjoy the healthy food! Anyway, thanks for your wonderful, helpful words. I hope your book is coming along well, as I look forward to reading it. I am certain it will help lot of people like me.
Sometimes I look at things differently. My daughter always told me I was her caretaker and I never thought of myself that way. She does well on good days & needs more help on those bad days. The other day someone referred to me as my daughter's caregiver. Ok after 7 years I get take her where ever she needs to go and care give her what ever she needs. Please laugh with me & feel good! We need it!
so so true. but my husband admits being lazy and taking advantage of my hard work. he chooses not to help with anything anymore. I feel he's so depressed he will never come out of it and this has ruined our marriage we have nothing in common anymore, we do nothing anymore, we don't even talk. he watches the same shows on tv all day in between sleeping. I'm lost I want out in the worst way. I feel used and like a doormat. I just don't think I can hold on to this kind of life anymore. help
Sarah's essay is also applicable to many others - our son is the TBI survivor but was 21 when his injury occurred. A grown man in college, enjoying being independent and active, suddenly changed. We are his caregivers for over seven years so far, and I sometimes feel myself being defined by his disability. I struggle to remember that I too deserve to feel happy and carefree again (sometimes). His life changed dramatically with his injury but ours did too. At a time when our friends are celebrating graduations, marriages, births of grandchildren, I often feel resentful. Normal or not, that's how I feel.
Thank you for sharing and reminding me to be kinder and more understanding of those who watch me struggle with my TBI.