Monday, March 7, 2016

Brother's 10 Birthdays with Brain Injury

Happy Birthday, Joe
It's a strange thing to commemorate. But when my brother Joe turns another year older, I can't help but think back to how we almost lost him, and feel especially grateful that he's here. Today is the tenth birthday he has celebrated since getting hit by a car as a pedestrian when he was 14 and suffering a severe traumatic brain injury. A couple Seattle Times articles from that time are still online, like this one from two weeks after the accident: "Young crusader struck in Shoreline." At that point he was still in a coma in the Pediatric ICU at Harborview.

Though Green has been upgraded from critical to serious condition, doctors don't know what his future holds.
"Outcome is quality of life, not if you live or you die," said Dr. Randy Chesnut, director of neurotrauma at Harborview. "We know the extent of it, but we don't know the long-term consequences."
Green isn't following commands or interacting with people, but Chesnut hopes within a year he will be able to tell the full extent of the boy's injuries.
"We can't fix the brain; now it's up to him," Chesnut said. "He'll be a different person."
Joe in the PICU at Harborview, July 2005
Then, one month after he was hit, he started to wake up: "Hit-run victim, 14, opens eyes after nearly month in coma."

At that point, we had absolutely no idea what kind of recovery to expect. It was three weeks after waking up before he said his first word, and then it was months and months of rehabilitational therapies, including an intensive residential program at Children's Hospital, before he could walk or talk. Considering he had to relearn those basics during most of what would have been his freshman year of high school, it's pretty remarkable that he was able to graduate high school just a year late.

Doctors told us that with brain injuries, the most healing that happens in the first two years. My parents were diligent during that time to keep him in therapies and make as much progress as possible, and that intentionality continued long after the first couple years. Ten years later, I think he is still healing, learning, and improving.

He has come such a long way, and is extremely high functioning and independent. He is not able to live alone at this point, but takes care of himself physically, does his laundry, prepares food, and gets around by walking or bus. He is a sweet and gentle man, and still loves kids and animals as much as before his accident. He likes hanging out with his nieces and nephews, and enjoys making things with his hands, like carving the names of friends and family in wood to give as gifts.
In terms of his cognitive function, the biggest deficit is his short-term memory. Here's an example: A couple months ago we had a cold snap. I rent a mother-in-law unit from my parents (where Joe also lives), and came outside one morning on my way to work to find my car windows scraped of the frost. I looked around in confusion at the other parked cars, all with frosty windows. But mine were clear. Not knowing who did it, I sent a group text to my mom, stepdad, and Joe saying, "Thanks to whoever scraped my windows!" Joe texted back, "No problem! Have a good day." Then my mom texted me separately, "What? That was me! LOL! We'll let him think that though. :)" We were both cracking up.

But of course, issues with short-term memory cause more than amusing mix-ups. It often causes major hassles and can cost a lot of money. He might lose irreplaceable items, forget he already bought something, or not follow through with something important.
Joe, sister Tonya, and I at Christmas
Medically, the most debilitating result of the brain injury is his seizure disorder. For patients with traumatic brain injury, it's common to have seizures in the first couple years, as the brain is healing and forming new neuropathways. For Joe, his seizures have become more and more frequent. He takes medication which definitely helps--if he misses a pill, he will almost surely have a seizure. He is incredibly conscientious about NOT missing his pills. Even if we are going to the store together at 7:30, just running down the street, he'll look at the clock and make sure, "How long will we be gone? Should I bring my 9:00 pills?"

Even with taking the medication correctly, he still has seizures, sometimes multiple times in a week. I have no idea how many seizures I've been with Joe through--maybe 30 or 40? They are incredibly common, and yet always frightening. I don't know how my parents do it. There is a constant vigilance required to be prepared and calm when something happens, but of course are always going to be taken by surprise or in a less-than-ideal circumstance.
Joe with cousins on the Washington coast
Last summer the family was at Seabrook for a cousin's wedding. The night before was a huge group dinner in the warm night air, and I had a few glasses of wine over the course of the evening. My mom had gotten tired and gone back to the house, but the rest of us were still hanging out. I came into the host's house from the deck just as Joe began having a seizure and cousins were helping lower him safely to the ground. I bolted back outside through the thick crowd to find my stepdad. By the time we got back up the stairs to Joe, he should have been coming out of the seizure, but wasn't.

Larry looked up at me, "Can you get mom and tell her to bring the car?" We didn't have cell phone service, and who knew how long it would take for the nearest ambulance to get to this unpopulated stretch of coast? If Joe needed to go to the hospital, we'd have to drive him. Suddenly feeling stone-cold sober, I took off in high-heeled boots to sprint in the dark across the deserted town of Seabrook. My mom and I drove back to the party, and thankfully the seizure had ended and Joe was stable by then. But the memory of the night is visceral for me; everything is okay until it isn't.

I used to take Joe hiking, but about half of the time he had a seizure on the trail and it was just too stressful. One time we were serveral miles back at Wallace Falls and I had no phone signal. Luckily it was a small seizure and he came out of it quickly and was able to walk shortly after. But what if it hadn't broken? What if he hadn't been able to walk out? What if he had gotten an injury as a result of a seizure? It was too much to think about.
This past New Year's Eve I was getting ready to go to a friend's wedding reception. I carefully applied makeup and twisted my hair into an updo--two things I rarely do. Appetizers and mingling were already underway and I was running late; I at least wanted to get there by 8:30 p.m. for the toast.

Just as I was about to change into a dress and heels, I heard shouting next door. It was a loud, grunting, "AH...AH! AH...AH!" I ran in my parents' house to find the front door ajar and Joe lying on the wood floor in the kitchen, seizing. Or rather, just finishing a seizure and in a very agitated postictal state, thrashing wildly. I sat cross-legged and put his head in my lap to protect his head from banging on the ground. I called my mom with shaking hands. It was everything I could do to keep Joe contained with one hand, and I could barely do it. "Mom, I think you should call the paramedics--I have to hang up now because I need both hands!"

Joe is a stocky, strong guy. He is about 7 inches taller than me and 70 pounds heavier. And the postictal state can bring out an almost superhuman strength. There have been times when we've called the paramedics and it's taken eight of them to get him secured to a stretcher to take him to the hospital.

It was physically everything I could do to keep him contained and safe in those minutes before the paramedics arrived. He would arch his back and kick his feet and slam me into the dishwasher, so hard that I was worried it would break the dishwasher door. His convulsive bursts were wracking my body and my lower back was aching. I knew I was okay and that he would be okay, but the violence of the constant physical assault was so shocking to my body that tears came to my eyes before I even realized it. It was scary trying to care for someone else while not knowing where the boundaries were of caring for myself.

Finally his convulsions started to slow just as I heard the sirens and saw flashing lights through the front window. After talking about Joe's condition, a paramedic looked at me and asked, "Are you okay?" I nodded and headed back home, my hair a mess around my shoulders, and my makeup in a black streak on my cheeks.
It's been 10 years now. We have gotten used to the new Joe. About once every six months I get an absolutely sick, sinking feeling when I think about him, indescribably angry and sad about how the accident changed him. I think about how much an average person his age might struggle to make friends, date, feel connection to others, find meaningful work, and develop an identity. And I can't even imagine how exponentially more difficult it must be for him.

But that feeling passes and I know I have to live in the moment. The accident happened, and for all the ways it has been difficult and changed our family, there is much to celebrate. Perhaps most of all, Joe is thankful for his life and still sees it as a blessing. He is grateful to be alive, even if it looks different than we may have imagined a decade ago. And I think that constitutes a very happy birthday.

8 comments:

jaws said...

Thank you so much for sharing and for being so honest. May the birthday celebrations be spectacular!

Lindsey Newman said...

Happy Birthday, Joe. Here's to many years of birthdays to come. Beautifully written, Amber. Thanks to you and Joe and your family for sharing his story.

AmberAnda said...

Thanks so much to both of you for reading!

Karen Stueland said...

Thank you for sharing!! It helps me understand how he s doing. He has your grandpa s look and smile. Beautiful man!!! He s so so so lucky to have you!!!

scott said...

Thanks for writing and sharing Amber. It's always good to hear that Joe is continuing to grow and still has his big heart. You guys are one courageous and loving family. Happy birthday Joe!

ElizaBeth said...

Joe is blessed to have a family that loves and cares for him - without all of you, his recovery might have been very different.

I had no idea you went through that before our NYE reception! I wish you would have told me, I would have hugged you longer and spent more time with you. Nothing is more important to me than the well-being of the people I love. Your grace under pressure is a testament to your character time and time again; no one would have guessed the queen of the Electric Slide had dealt with a violent seizure, paramedics, and streaky makeup just a short while earlier!

Vivian Schroth said...

I just came across your blog, Amber-Bamber, about Joe. He is so lucky to have a close and loving family. I miss the Joe we all had before his traumatic injury, but due to the circumstances, I believe he is in the best situation his condition allows!! Love to all - Great Aunt Vivian❣

AmberAnda said...

Thanks, Aunt Viv!