Three years ago today I received a telephone message informing me that my brother had been hurt. That he was "okay," but "in the hospital."
The other day, rather serendipitously, I found the black and white composition book that I had taken with me to Rhode Island, scrawling obsessively in. What the doctors said about his traumatic brain injury. Who came by and when. Potential insurance and legal information. And quotes, mostly quotes, from Brian. Fortunately, although he was quite agitated and combative, he was also humorous and totally quote-worthy. I was able to glean only a few laughs in the moment, mostly haunted by the possibility that he would never be the same. But now, with a full recovery and hindsight on my side, I can re-read the things that he said, and chuckle sincerely.
The initial pages of the composition book that is nearly filled with info regarding my brother's accident, contains notes from house-hunting, mortgage numbers, HR info for starting my fellowship at the VA hospital, and a few random baby thoughts, like name ideas written illegibly in the corner of a page. I was in the throes of starting my "big girl" life - pregnant with the Bean, looking to buy our first house, slated to start my SLP fellowship specializing in working with people with TBI literally the next day. But I was interrupted with a trauma, one I wasn't sure at the time was survivable, or at least, recoverable.
Following that voicemail, and with limited information by way of his girlfriend at the time (he was flown overnight to a trauma hospital in Providence, RI, he hit his head but seemed alright), and after the threat of a full blown panic attack subsided, I jumped into action, tracking down the hospital, eventually demanding to speak to a doctor involved in his care.
I spoke with a Dr. Sullivan about Brian's TBI (traumatic brain injury) and associated facial fractures, big scary medical words and numerous brain contusions scrawled in a list form:
"admitted to ICU
sig bleeding, L parietal lobe
central bone fracture
L temporal bone fracture
L frontal, L parietal, L temporal
R midbrain
subdural bleed
L small subdural
epidural hematoma
mandible - R side
intubated b/c can't protect airway
currently sedated
neurosurg on board
meds to reduce pressure"
At some point I asked the doctor point-blank about whether or not I should hop my fear-of-flying-pregnant-ass on a plane and rush to my brother's side, to which he responded, "if it were me, I would, yes."
One of the most salient memories of that time was calling to tell my dad the news of Brian's brain injury. "Nooo, nooo, nooo," my dad wailed. "I just can't figure out why I can't seem to protect my family."
***
In grade school, I was terrified of being kidnapped. And then along came Polly - Polly Klaas, that is - and her terrifying murder. My fears burgeoned, with the awareness that I could not only be taken, but taken in the MIDDLE OF THE NIGHT, from my HOME, and during a SLUMBER PARTY no less. For a while I told myself that "god" wouldn't let me get kidnapped because my parents had already endured the death of a child. As if their previous tragedy insulated my family from future threats. This was often the thing I hung on to in the middle of the night, difficulty falling back asleep, afraid of bad dreams and bad people. As I got older - aware of my mom's battles with cancer, of the parental difficulties related to having a teenaged son on drugs and living on the streets, and later the death of my mom - I started to wonder if, in fact, my family might be cursed. The fact that used to aid my security had since turned into a reason that things would always go awry, that the other shoe - and there will be one - will always drop. I could see why my dad might feel as though he couldn't protect us.
***
I was on the first flight I could book to Rhode Island and from the airport called my supervisor at the VA to tell them I wasn't able to start my fellowship/job on Monday after all - an ironic twist of faith, the person with a brain injury who most needed my help was my own brother. As noted, I am a fearful flyer, and rely heavily on both the intake and the possession of drugs such as Xanax and Klonopin. However, baby-growers have not been approved for these medications, so I had to embark on not only a transcontinental flight - but a cross-country flight for an emergency - sans anti-anxiety meds. I sat next to a very nice older woman on the plane who, aware of my sniffles, asked me if I was sick. I informed her that, no, I was not sick, but was in fact crying. My brother was assaulted. I'm worried about my dad. My mom died years ago. I'm just now in my second trimester with my first pregnancy. It doesn't seem fair.
"No one promised it would be," she said, sweetly, patting my leg.
Quite obviously, my "dead mom" issues immediately bubbled to the surface. I wrote that I wanted to wear a sign explaining the state of my emotions, something to the effect of "pregnant, motherless, and headed to visit my brother in the trauma ICU."
I journaled about the grief that reared its ugly head, about "the past that haunts me, and the future that seems harrowing." Reminded of the time, 10 years before, flying in the opposite direction, with Bri by my side, traveling from Rhode Island to Portland to watch my mom die. I worried that now, traveling instead from Portland to Rhode Island, this time alone, wondering if I was also going to have to watch my brother die.
On the plane, I made a list of traits I loved about my brother, of memories that came to mind. I hoped with all hope that the little Bean growing in my belly would get to meet its Uncle B, get to know the man I was privileged to call my brother. Or if he, too, would simply be a name, a story, a figment of the future's past.
Before boarding the plane, Alex rightfully worried about me and our growing family, instructing me to "remember to put on your oxygen mask first, then assist others." I didn't know how long I was leaving for, whether just a day or two, or several.
When I first saw Bri, it was late late at night, and he was sedated and intubated in a trauma ICU room by himself. He looked terrible. Like maybe he was in a coma. Or dead. He was battered and bruised. He only sort of resembled himself.
His girlfriend and colleague had picked me up at the airport and brought me directly to the hospital. I, maybe childishly, brought along a few photographs to place around Brian's bed, in case he were to wake up, to see a familiar face I hoped. Or maybe I brought them for me, for the family support that I had left in Oregon.
Although his girlfriend at the time stayed every single night with Bri in the hospital, I made the effort to "put on my own oxygen mask" and retired each night for sleep in a hotel.
By the time I returned the following day, the tubes had been removed and he was breathing again on his own. He was still more or less bed-ridden, had a "sitter" to help ensure he wouldn't pull out his other tubes and IVs, and was occasionally in restraints.
"Is it your head or your jaw that hurts?" the nurse asked him.
"Ouch," he replied.
The doctors told me they would keep him in the ICU, to continue to monitor him for at least the first 72 hours, worried more about brain swelling than bleeding. I tracked his injuries ("left frontal intraparietal hemorrhage, subdural hematoma, left temporal/maxillary fracture, right mandible fracture"). I noted his Glasgow Coma Scale ("12"), and recorded my impression of each of his neuro checks ("2 p.m., some changes, L droopy eye, difficulty focusing"). His follow-up CT scans were unchanged. He was made NPO (nothing per oral, as in, no food or drink) and slated for jaw surgery that evening.
I spoke with my dad frequently, stressed and sobbing, worried about a possible future as my brother's caregiver. My dad commended me on my bravery. For flying to RI, for supporting Bri. "Bravery is not simply being unafraid, but having fear and heading toward it anyway." He's always been a man of wise words. But I certainly didn't feel brave.
By the third day, I was ready for Bri to be better again, to return to himself. Instead I got an agitated, combative shell of my brother. During the night his girlfriend woke up to him standing next to his bed covered in blood, as he had ripped out all of his tubes. He was once again assigned a "sitter," again ordered to wear a lap belt and wrist restraints.
The jaw surgery didn't happen as planned, and Brian continued to be denied water as we continued to wait. This particularly upset him. "Why can't you give me any of that shit?" "I got it last time I was here." "What the fuck?!? They let me drink it last time. I just need to finish the joint." Talk of thirst and hunger dominated conversation.
Later in the day, he first started to be able to answer orientation questions - about where he was, the date, why he was in the hospital. Occasionally he would even answer correctly, but mostly he said weird stuff.
What's today's date?
"Day and a half after yesterday."
Where are you?
"I need to go back to our place, in Telluride."
How would you get there?
"Same way as yesterday."
His confusion continued well into the night.
"I just want to go home."
Where's home?
"Telluride."
You live in BI now, Bri.
"That's what I meant."
Where do you work?
"Lotus Petal. Honga."
Bri, you work at the Manisses now. Who do you live with?
"My girlfriend."
Which girlfriend?
"My MAIN one."
What's her name?
"The one who's here."
They relocated him from the ICU to the neuro floor overnight.
Do you know why you're in the hospital?
"I just finished it."
Do you know why you're in the hospital?
"Because I had a couple days off."
Where are you?
"At the wire place."
He hated his new roommate, an elderly man with a severe Rhode Island accent and several demands of his nurses. We repeatedly asked to have Bri transferred to a private room.
The dietitian came to discuss the impact of the upcoming jaw surgery on his diet - full liquids for at least six weeks.
I spoke with the Block Island police chief, informing him about the state of my brother's health, inquiring about legal issues related to the assault. They had arrested the suspect, he was being charged with felony assault, and there was no difficulty proving that he had punched Bri, unprovoked.
Brian continued to be miserable, in pain, and generally confused.
"This sucks."
"Can I please have the dynafite, dynarite, dynamite?"
"I'm gonna lose it."
"It's been one hour but like nine."
I made lists of questions for the neurologist, the physician's assistant, the social worker.
Bri, again, ripped out his IVs to go to the bathroom. He relied on morphine to help with his significant head and jaw pain.
"I hate feeling this sour."
He remained "on call" for his jaw surgery, and I was told he would discharge home from the hospital following surgery. I couldn't imagine taking care of him myself. He was like a 175-pound toddler with a conduct disorder. His girlfriend didn't appear to understand the current situation (uninsured, brain injured) and the potentially lasting ramifications.
The next day, he remained somewhat surly, but also became emotionally labile, apologizing and crying intermittently.
"I can't do this another day."
"Get me out of this booby trap."
"Why are you here?"
"Is your brother here?"
"I want Billy."
"I really miss Alex."
"I'm not gonna make it, it's 1 o clock not 5 o clock. I don't care. Let's just walk around the beach."
"You coming out to BI? Because you didn't last time. That's sad."
"I'm glad you still like me."
During his evaluation with the physical therapist, he required a lot of redirection. When asked his name, he responded about stresses at work, had a difficult time coming up with the date, but was able to more or less participate the throughout the assessment. His language continued to be impaired.
"You're lucky you got me at bedtime. I'm trying to be asleep because I'm pissed off I've been here five days now."
"I think you waited for me to be in the spilled milk."
"I'm in the cootie."
After getting blood pressure measured: "Was that a good number? Did you like it?"
Later that day he was relocated to a single room on the neuro floor. While he slept - the only time he sort of seemed okay - I journaled about my worries:
"Things I'm afraid for:
- anomia/language issues
- continued alcohol use
- decision making and impulsivity
- sense of humor changes
- frustration/anger with self or assailant
- him being far away from me"
Despite my having tried to monitor his cell phone use, we did manage a few visitors. He (mostly) passed his OT assessment. And his SLP assessment was interesting enough for its own blog post at the time. My favorite memory from the whole endeavor - of which I still need to make Bri a t-shirt - was when he was asked to name as many animals as possible in 60 seconds.
"Ancient polar bears. Old VW bus. Vice grip."
When provided with a cue, to name animals on the farm at his restaurant.
"Ox. Lemur. One hat not two hat (camel)."
When being assessed for comprehension, asked both simple and complex yes/no questions, the SLP questioned him: Do pigs fly?
"If you like pigs a lot."
I think my mom would have gotten a kick out of his reply.
At some point he was finally called to get the surgery to wire his jaw shut. He had to sign a bunch of paperwork, and I wondered how they could allow a person who clearly lacked capacity to make such decisions. As if he had a choice. He was a mess as he was coming to, crying and trying to speak, so pissed his mouth wasn't moving the way his brain was telling it to. He kept repeating something to the effect of, "If I had known this is what you would do, I would have never agreed." He blamed me, or so I thought, and felt terribly guilty. If only I had gotten him a hamburger before the surgery.
He continued with significant pain, a hunger that couldn't be satiated by a liquid diet, and said peculiar things.
"I got a weird impact on my teeth. I spent four or five days before they said we need to tie you up for a week."
"I think a lot of my words are gone because I'm glued together."
After 10 days in the hospital, he was finally discharged home, with recommendations for 24/7 supervision. No baths, no driving, no ladders, no bikes, no alcohol, no work. The neurosurgeon cleared him to fly, but my dad and I ultimately agreed that Bri would likely heal better at his own place, and his girlfriend at the time agreed to help care for him. This alone scared the shit out of me - I considered Block Island to be a toxic place, and the fact that my brother was hurt so severely in his home, after bar-close, was further proof of this to me. I worried his friends wouldn't understand. That he would want to drink. That because he more or less seemed like himself (brain injuries are often considered to be "invisible" injuries), his friends would treat him as such. That they would trust his judgment. Defer to his wishes. Think that his only problem was his broken jaw.
My journal is filled with incomprehensible notes about insurance, medicaid, "intractable damage," state and federal unemployment, unemployability, SSI and TDI. I relayed all the bureaucratic and financial information to my dad, as I knew he would be the one handling those components after I escorted my brother back to the island where my dad would soon meet us. I stayed on the island another fews days, making note of the dozens of voicemails, texts, and emails I needed to reply to. Those offering me comfort, those inquiring about my brother, or those related to the job I had yet to begin. I finally returned home, and remember this as the first time I felt a bit of relief throughout the ordeal.
***
Today, three years after the assault, I still remember those weeks as one of the hardest times of my life, at least of my adult life. I think about how things could have been. I think about how lucky he is, about how lucky I am. How lucky he is to have made a full recovery, with very minimal residual effects (changes in smelling and jaw pain). How lucky he is to have had a family that was able (financially, emotionally, logistically) to run to his side. How lucky he is to have a sister willing to advocate for him in the bureaucracy that is our healthcare system, to be that persistently squeaky wheel, demanding care and information. How lucky that my brother's girlfriend had the idea to call me immediately. How lucky that I was able to be there for him, for me. But mostly, how lucky we are that he is truly fine now, that the B-Love we all know and love is the same person today as he was 3 years and 1 day ago. That he got to meet my Bean the day we returned home from the hospital, flying halfway across the world to meet her. That I got to dance with him at his wedding last month. That I continue to have the brother that I have always adored.
***
I was already blogging at the time of his injury, so there are posts written from that time, here, here, here, here, here, here, here and here.
I spoke with my dad frequently, stressed and sobbing, worried about a possible future as my brother's caregiver. My dad commended me on my bravery. For flying to RI, for supporting Bri. "Bravery is not simply being unafraid, but having fear and heading toward it anyway." He's always been a man of wise words. But I certainly didn't feel brave.
By the third day, I was ready for Bri to be better again, to return to himself. Instead I got an agitated, combative shell of my brother. During the night his girlfriend woke up to him standing next to his bed covered in blood, as he had ripped out all of his tubes. He was once again assigned a "sitter," again ordered to wear a lap belt and wrist restraints.
The jaw surgery didn't happen as planned, and Brian continued to be denied water as we continued to wait. This particularly upset him. "Why can't you give me any of that shit?" "I got it last time I was here." "What the fuck?!? They let me drink it last time. I just need to finish the joint." Talk of thirst and hunger dominated conversation.
Later in the day, he first started to be able to answer orientation questions - about where he was, the date, why he was in the hospital. Occasionally he would even answer correctly, but mostly he said weird stuff.
What's today's date?
"Day and a half after yesterday."
Where are you?
"I need to go back to our place, in Telluride."
How would you get there?
"Same way as yesterday."
His confusion continued well into the night.
"I just want to go home."
Where's home?
"Telluride."
You live in BI now, Bri.
"That's what I meant."
Where do you work?
"Lotus Petal. Honga."
Bri, you work at the Manisses now. Who do you live with?
"My girlfriend."
Which girlfriend?
"My MAIN one."
What's her name?
"The one who's here."
They relocated him from the ICU to the neuro floor overnight.
Do you know why you're in the hospital?
"I just finished it."
Do you know why you're in the hospital?
"Because I had a couple days off."
Where are you?
"At the wire place."
He hated his new roommate, an elderly man with a severe Rhode Island accent and several demands of his nurses. We repeatedly asked to have Bri transferred to a private room.
The dietitian came to discuss the impact of the upcoming jaw surgery on his diet - full liquids for at least six weeks.
I spoke with the Block Island police chief, informing him about the state of my brother's health, inquiring about legal issues related to the assault. They had arrested the suspect, he was being charged with felony assault, and there was no difficulty proving that he had punched Bri, unprovoked.
Brian continued to be miserable, in pain, and generally confused.
"This sucks."
"Can I please have the dynafite, dynarite, dynamite?"
"I'm gonna lose it."
"It's been one hour but like nine."
I made lists of questions for the neurologist, the physician's assistant, the social worker.
Bri, again, ripped out his IVs to go to the bathroom. He relied on morphine to help with his significant head and jaw pain.
"I hate feeling this sour."
He remained "on call" for his jaw surgery, and I was told he would discharge home from the hospital following surgery. I couldn't imagine taking care of him myself. He was like a 175-pound toddler with a conduct disorder. His girlfriend didn't appear to understand the current situation (uninsured, brain injured) and the potentially lasting ramifications.
The next day, he remained somewhat surly, but also became emotionally labile, apologizing and crying intermittently.
"I can't do this another day."
"Get me out of this booby trap."
"Why are you here?"
"Is your brother here?"
"I want Billy."
"I really miss Alex."
"I'm not gonna make it, it's 1 o clock not 5 o clock. I don't care. Let's just walk around the beach."
"You coming out to BI? Because you didn't last time. That's sad."
"I'm glad you still like me."
During his evaluation with the physical therapist, he required a lot of redirection. When asked his name, he responded about stresses at work, had a difficult time coming up with the date, but was able to more or less participate the throughout the assessment. His language continued to be impaired.
"You're lucky you got me at bedtime. I'm trying to be asleep because I'm pissed off I've been here five days now."
"I think you waited for me to be in the spilled milk."
"I'm in the cootie."
After getting blood pressure measured: "Was that a good number? Did you like it?"
Later that day he was relocated to a single room on the neuro floor. While he slept - the only time he sort of seemed okay - I journaled about my worries:
"Things I'm afraid for:
- anomia/language issues
- continued alcohol use
- decision making and impulsivity
- sense of humor changes
- frustration/anger with self or assailant
- him being far away from me"
Despite my having tried to monitor his cell phone use, we did manage a few visitors. He (mostly) passed his OT assessment. And his SLP assessment was interesting enough for its own blog post at the time. My favorite memory from the whole endeavor - of which I still need to make Bri a t-shirt - was when he was asked to name as many animals as possible in 60 seconds.
"Ancient polar bears. Old VW bus. Vice grip."
When provided with a cue, to name animals on the farm at his restaurant.
"Ox. Lemur. One hat not two hat (camel)."
When being assessed for comprehension, asked both simple and complex yes/no questions, the SLP questioned him: Do pigs fly?
"If you like pigs a lot."
I think my mom would have gotten a kick out of his reply.
At some point he was finally called to get the surgery to wire his jaw shut. He had to sign a bunch of paperwork, and I wondered how they could allow a person who clearly lacked capacity to make such decisions. As if he had a choice. He was a mess as he was coming to, crying and trying to speak, so pissed his mouth wasn't moving the way his brain was telling it to. He kept repeating something to the effect of, "If I had known this is what you would do, I would have never agreed." He blamed me, or so I thought, and felt terribly guilty. If only I had gotten him a hamburger before the surgery.
He continued with significant pain, a hunger that couldn't be satiated by a liquid diet, and said peculiar things.
"I got a weird impact on my teeth. I spent four or five days before they said we need to tie you up for a week."
"I think a lot of my words are gone because I'm glued together."
After 10 days in the hospital, he was finally discharged home, with recommendations for 24/7 supervision. No baths, no driving, no ladders, no bikes, no alcohol, no work. The neurosurgeon cleared him to fly, but my dad and I ultimately agreed that Bri would likely heal better at his own place, and his girlfriend at the time agreed to help care for him. This alone scared the shit out of me - I considered Block Island to be a toxic place, and the fact that my brother was hurt so severely in his home, after bar-close, was further proof of this to me. I worried his friends wouldn't understand. That he would want to drink. That because he more or less seemed like himself (brain injuries are often considered to be "invisible" injuries), his friends would treat him as such. That they would trust his judgment. Defer to his wishes. Think that his only problem was his broken jaw.
My journal is filled with incomprehensible notes about insurance, medicaid, "intractable damage," state and federal unemployment, unemployability, SSI and TDI. I relayed all the bureaucratic and financial information to my dad, as I knew he would be the one handling those components after I escorted my brother back to the island where my dad would soon meet us. I stayed on the island another fews days, making note of the dozens of voicemails, texts, and emails I needed to reply to. Those offering me comfort, those inquiring about my brother, or those related to the job I had yet to begin. I finally returned home, and remember this as the first time I felt a bit of relief throughout the ordeal.
***
Today, three years after the assault, I still remember those weeks as one of the hardest times of my life, at least of my adult life. I think about how things could have been. I think about how lucky he is, about how lucky I am. How lucky he is to have made a full recovery, with very minimal residual effects (changes in smelling and jaw pain). How lucky he is to have had a family that was able (financially, emotionally, logistically) to run to his side. How lucky he is to have a sister willing to advocate for him in the bureaucracy that is our healthcare system, to be that persistently squeaky wheel, demanding care and information. How lucky that my brother's girlfriend had the idea to call me immediately. How lucky that I was able to be there for him, for me. But mostly, how lucky we are that he is truly fine now, that the B-Love we all know and love is the same person today as he was 3 years and 1 day ago. That he got to meet my Bean the day we returned home from the hospital, flying halfway across the world to meet her. That I got to dance with him at his wedding last month. That I continue to have the brother that I have always adored.
***
I was already blogging at the time of his injury, so there are posts written from that time, here, here, here, here, here, here, here and here.
I wish I could be as honest in my posts as you are in yours - but alas - my readers would DIE if they knew what I was actually thinking. :) Also, I wish I could remember as much as you do! I'm shamed I haven't even completed my birth story yet!
ReplyDeleteYou and your family are so strong - even after - and despite going through so much.
HUGS! XO