Daily Archives: January 14, 2011

Traumatic Brain Injury: Writing Down the Rabbit Hole

I want to use this part of my blog share how  Traumatic Brain Injury affected our lives and always will. TBI as it is commonly called is a lot more common than I once knew, and there is very little support for the families and caregivers out there in the ‘real world’. TBI-affected people often look really normal and the leftovers from their injuries can be mild to profound, you cannot read the book by the cover in the case of TBI in many cases.  I hope this is all book at some point, a sort of flashlight for families out in the TBI wilderness from someone who made it through.

 We are the lucky ones, Terry came back, and he is about 90% of the Terry he was before he crashed his motorcycle into a deer while he was doing 70 MPH at night in Montana a few years back. I tell people who ask that it feels like I am married to his twin, he is not the man I married, he’s just a little different from that guy, but we are doing well and happy to be here.

 The focus on Gabrielle Giffords brain injury brought memories rushing back this week. I am so glad I kept a journal and sent detailed emails and even took photographs. When the President said, “She opened her eyes”, I could relate on a personal level. Here is the letter I emailed home on September 18, 2006 from the ICU in Billings, Montana, Terry crashed on the 13th and he was in a coma for several days before he opened his eyes.

 September 18, 2006 

Hello to all:
First let me thank all of you so very much for your love, energy and prayers. I do believe there are some miracles at work here–today he opened his eyes and kept them open for a minute or two at a time. He is tracking and that’s hard for him because his doctor said with the fractured eye socket he’s probably seeing double. He looked at me and knew who I was. He was able to respond by squeezing my hand–and when I was talking with his nurse and laughing about covering my gray hair after this week and his nurse said to him, “Terry, I’ll bet you don’t care if she has gray hair.” He shook his head no distinctly, we both saw it, small gains but exciting still.

  He is still intubated and we hope the tube comes out tomorrow. It all depends on his level of cognizance. This matters a lot in this case because his right lung is still fairly full of fluid that he will have to be able to cough up by himself. It is amazing how much you learn that you never wanted to know going through this experience. He is bruised from one end to the other and his right hand is broken and very swollen. He has the remnants of a shiner and various cuts and nicks all over him, and he’ll have a good sized scar on one cheek where he apparently landed on the pavement. He still has an epidural in his back to help with the rib pain and pain from lying on his back for so long. You can tell he’s pretty darned tired of it, his legs are restless and kicking constantly–he still loves having is feet rubbed and that calms him down for a few minutes. He’s not cognizant enough to remove the restraints from his wrists yet–he tries to pull the tube out when he gets a chance and I’m so hoping it gets taken out so he can put on some Chapstick–among other things, like breathing on his own.

 The valve has been removed from his head and his pressures remain very good–as do his head CTs. He does have a rather unfortunate mullet though, because his hair was shaved to just above his ears, and he has a whole lot of big black stitches. I’m thinking Dr Frankenstein was in on the surgery( I guess I’m so happy with the gains he’s made that my sense of humor has returned with a vengeance).

 How any single person will do emerging from a head injury is hard to predict because the brain is such unmapped territory. Each and every person is different in their injury and response. I have learned to live in the now and be grateful for every small gain. The doctors have done what they can for his head injury–the rest is up to God and the angels and so far they’ve done a damned fine job. We don’t know the extent of his brain trauma yet, and we won’t until assessment can take place in a week or so. I’m not even speculating, just living in the here and now, happy I can hold his hand and have him squeeze mine back.

 Please don’t send flowers—he can’t have them in the ICU anyway. I have been thinking when we get through this I want something positive to come out of it. I have Terry’s leathers and his helmet and they tell a story that I really want to spread around–riding safely and wearing a helmet. Terry was doing all that and still had an accident that was not his fault while he was doing 70 mph. If there was no helmet there would be no Terry. That makes my blood run cold because Montana is a helmet optional state. So instead of flowers let’s put our thoughts and energy into something that could save another life. I wanted to tell you all how overwhelmed I am by the outpouring of love and care. There are prayers in New Jersey, prayers in monasteries, prayers in the LDS temple in Oakland, prayers in Washington D.C., and prayers in Georgia and Chicago and Southern California. Terry has received prayers and good energy from every sort of denomination and religion from Buddhists and Wiccans to Catholics, Seventh Day Adventists, Latter Day Saints, firemen and Harley Hog chapters–even from the barista at Starbuck’s who knows him as the Soy grande latte guy! Thank you for all of them and keep them coming–we aren’t there yet.

Terry always looked sad before he went to TBI rehab. He was a different person then

 

Christmas 2010. Terry is back and we celebrate every day like it was Christmas!

 That was in 2006. Here we are in 2010 and its been a bumpy road but we made it. I want to post more of the memories, the coping, the stories, how it was. My hope is that anyone out there dealing with TBI will find some help in even seeing the footsteps of someone else who tracked through that wilderness. Nothing ever stays the same, that’s the good news and the bad news I think.

 Our prayers go to Gaby Giffords and her family on their long road home.  Please, if you ride a motorcycle, a bicycle, ski or snowboard or skateboard, think about wearing a helmet. If you are impaired that’s one thing, but what about the damage to your family and loved ones for the rest of their lives? How about the cost in medical bills, time off work, the years your children lose with head injury? The people I saw struggling at the Centre for Neuroskills in Bakersfield are a story for another day, for today we have hope. I will be writing down that journey from then to now and  it will be found in my blog under living with TBI, I hope it finds the folks who need to know they are not the only ones out there figuring out what comes next.

The Angel of Montana, shot the week after Terry’s accident

TBI 1: September 13th. The journey down the rabbit hole begins

This chapter is the beginning of life after Terry’s accident. You are reading what amounts to a chapter in a book I am trying out on you, (thanks for that by the way.) I know its long, but this is what happened from  8:30 a.m.  on September 13th, when I found out about the crash, to 2:30 a.m. the next morning, when I finally saw Terry for the first time.

I live in Washington State and my winters are gray and wet, which means we all hang on to the sun as long as  we can.  Everyone who lives here loves our Septembers in Washington, the wonderful warm indian summers that usually come calling at the beginning of September and hang around until  October’s end, letting us slide into gently into fall and the gray of winter.  September 2006 started like most of them do, warm in the day and cool in the evenings.

My beautiful studio that Terry built for me

 At 8:00 p.m. on September 13th, the studio was still warm from the day’s heat, French doors opened wide letting in the soft evening air. The cats sprawled outside on the porch basking in the very last rays of sun pouring in from the west. As usual, our dog Nellie was annoying the squirrels and the black cat next door by turns. My 14 year old son Torin was in the loft reading and I was happy to have a few extra hours to work on a new piece.

 The jewelry I was working on was taking shape and it was one of those magic times in my artist’s life. Those rare times when the universe aligns and the work goes smooth and fast and I know it’s good. Out of nowhere, I heard my husband Terry’s motorcycle in the distance, I glanced up at Torin in the loft and said, mostly to myself, “What’s Terry doing home from vacation two days early?”  

 Terry and his riding partner Don had left on their annual odyssey ten days before. It was the day before the Labor Day weekend when they took off, using the weekend to add a few more days to their trip. They look forward to this ride every year, enjoying the weeks of planning and motorcycle tuning, tweaking their loads and map reading. This year they were headed out to Idaho to explore Terry’s old family homestead and then on into Wyoming and Montana to ride some wide open country.  Terry’s Harley Davidson Fat Boy was the only thing he loved almost as much as me. He spent hundreds of hours working on it as a talented mechanic and “wrencher,” and his bike had a unique sound audible for blocks around.  His exhaust system was tuned like a motor-driven percussion section to extract the maximum noise from the engine and the minimum interest from the police.

 When I married a biker four years ago I began to learn to hear individual motorcycle exhaust systems like arcane grease covered music. It’s not a skill I ever expected to pick up, but with the gift of a bright blue motorcycle of my own for my birthday our first married year, I became exhaust system sound devotee too.

 Torin looked up, he heard the noise too; he mumbled something in my general direction and kept reading. I walked out on the porch curious to hear the approaching bike better; wondering what could have brought him home so early and disturbing the solar powered cat piles in the process. The sound faded and disappeared. I tried to hear it but it was just gone, cut off like a switch had been flipped. I shook my head and went back inside to work a little longer before bedtime.

Terry snapped this shot of Don and their bikes somewhere in Idaho

 Daylight was going and the inky blue approach of night saw me put away my tools and close a satisfying bout of work. I was a little surprised that Terry didn’t call me that night. It was the first night on his two week riding vacation that he hadn’t called me on his cell phone to report excitedly on what he had seen and done that day. I looked forward to his calls and each evening; I got the breakdown of where he and Don had ridden and the roads they found in their travels. He gave me the nightly critique of the restaurants they discovered along the way and what they ate. His favorite was a place called “Pickle’s Place”. He laughed and told me that out front there was a giant green chair. “You know, like the one on Laugh In that Edith Ann sat in? Me and Don climbed up and sat in the chair and had somebody take our picture.” I smiled when he described two big bikers in all their leather gear parked in that chair and the reaction of the people headed into the restaurant.

 I didn’t worry about his not calling although it was unusual. I assumed he was in an area with no cell phone service, something that happens when you ride motorcycles in what is left of the Wild West. I knew from his call the night before he was near Yellowstone and looking forward to exploring it again. I slept well that night and overslept the next morning.  Seven a.m.! Torin was going to be late to school if we didn’t scramble to get him there on time. He missed the bus which meant we loaded the dog, Torin, me and my coffee cup into the car and took off for school.

 Torin got dropped off at high school just in time for the last bell and I drove my bright yellow Mazda home juggling coffee and our overzealous rat terrier, Nellie.  Nellie wanted out of the car as much as she had wanted in the car in the first place, and she galloped up the steps ahead of me as I fumbled my keys out of the ignition and headed through the garden to the studio to get my day started. I unlocked the door, put my now cold coffee in the microwave to warm it and fed the two complaining studio cats. Mom Cat and Sweetpea were meowing at me, trying to tell me they had never had a meal in their lives, while simultaneously wrapping themselves around my ankles like obsese furry ropes.

 I poured dry food out for them and they crouched in front of their full bowls to eat and the dog plopped into her basket under my desk. I retrieved my coffee from the microwave and headed for the office end of my studio. I turned the computers on and checked my office voice mail for messages I needed to return. It was a beautiful blue sky morning when I sat down and listened to the message I never expected.

 I always wondered what I’d do if I got that Call. Sometimes I’d think about it in a repelled but fascinated way when I’d see a movie or hear a story about someone who got one of those Calls. I always pushed the thoughts away like they would attract bad luck–if I didn’t think about it, it would never happen. God forbid I would get one of calls where the voice on the other end gives you the worst news you’ll ever hear about someone you love.

 I got the call I never expected by voice mail from a friend of Terry’s, a fireman he doesn’t see much of since his divorce several years ago. The same old story—one of the things that got split was the mutual friends—and Terry didn’t get to keep many of them.

When I heard Jerry’s voice I knew something was really, really wrong. Why would he be calling me? I only knew him in the most casual way, things like shaking hands at a party and saying hello when we ran into him at a Starbucks getting coffee.

 Getting the call via voicemail gave the fear a chance to coil up in my chest like a boa constrictor, squeezing the breath from my lungs from the inside out. I was shaking and terrified. “Call me as soon as you can, here’s my number”.  I started to dial his number but before I could punch a button, the phone in my hand rang and it was Jerry.  “Roxy? This is Jerry.”  I blurted out, “What’s happened?” He told me there had been an accident, a bad accident. I asked him, “Is Terry alive?”  He answered, “Yes, he hit a deer on the bike and he’s badly hurt and you need to get there. The accident was last night outside Livingston, Montana.” Where the hell was Livingston, Montana?  I wanted to run out the door, get on anything that was moving fast or just run down the street and scream. I wanted off the phone.  I rushed him through the information he had heard from Don. Don went down on his bike too and he was slightly hurt, badly shaken and traumatized by what had happened to his buddy. The sound of Terry’s bike came back to me from the night before, haunting me.

  “The accident happened last night after dark but we couldn’t find your number,” Jerry explained. Terry’s riding partner Don had gone through Terry’s wallet at the hospital and couldn’t find any contact information for me. He finally found a tattered check I wrote Terry that he was carrying in his wallet. The check had our address on it but no telephone number.

 To complicate things further, we had gone to just cell phones for our personal use after we deduced the only people who called us on our home phone were trying to sell siding, roofing or tickets to some fundraising benefit or other. The benefits were ostensibly for firemen or policemen and usually featured either broken down clowns and circus acts or broken down clowns in rock and roll acts. We were not interested in roofing, siding or clowns so we got rid of the land line and went to just our cell phones. We did it right too—put all the contact information in the cell phone under ICE as directed by all and sundry. This meant no phone listing in the local telephone directory which backfired on us—no one could find my number to call me.

 Terry’s cell phone was either splattered all over Interstate 90 or somewhere in Montana intact. No other contact information for me was in his wallet except that check. Jerry being a fireman somehow found someone who knew someone and got my office phone number.  Jerry said Don had asked the local Olympia police to come and tell me about the accident and they refused—they had to be called by the Montana police first. In retrospect I’m glad I got the news from a friend. If I had opened the door to a uniformed police officer in the middle of the night I probably would have had a very cinematographic reaction complete with screaming and crying.

 As it was I just wanted off the phone with Jerry and onto the phone with the hospital in Billings, Montana. I wanted information.  That call was the first step in a long, terrifying and exhausting quest for information. The medical community is unfailingly kind, friendly and evasive. It’s like talking to a fur covered concrete wall; it seems nice at first but you realize there is no comfort to be had after a few seconds. There is no straight answer to anything because healing is a work in progress and a patient’s status in the ICU can change really fast or really slow. I’m not sure which one is worse. 

 That first morning, I hung up the phone and sat at my desk. My coffee cup was still steaming and the sun was falling across the keys of my computer and onto the blonde wooden desk top. Everything seemed to be hyper-real. I sat there and softly said, “Oh God, oh God, oh God,” to myself over and over. Not the most grown up reaction but now, ironically,  I knew what I’d do when the call came, I’d sit at my desk in shock and try to think and wonder why the rest of the world seemed so normal. 

I called the hospital in Billings and got more details. They sounded soothing, reassuring, kind and non-committal. They told me where Terry was and how he got to their ICU via Life Flight. He had broken ribs on both sides of his chest, punctured both lungs and collapsed one. He had fractured an eye socket, broken the little “fins” on each side of his neck and four bones in his right arm and hand.  He had an epidural hematoma. I’d heard of subdural but epidural was just the first word in my new advanced mental medical dictionary. Terry had brain surgery as soon as he got to Billings to drain the hematoma and try to forestall brain swelling. A valve was put in his head to measure ICP, intracranial pressure, my second new medical term. After the craniotomy he was unconscious, in a drug induced coma. I was told all anyone could do was wait and see if he would ever wake up.

 In Olympia, I picked up the phone and started calling. My job finally paid off. Seven years of being a corporate road warrior stood me in good stead. I enjoyed every second of my travels all over the country although I cannot say my family did more than barely tolerate my absences. I would slink home after a long trip and pretend it was horrible so they’d feel better. I used to spend days making it up to them—do men who travel for a living do this or was it just mom guilt?

 I wasn’t panicked at having to make travel arrangements on the fly. I knew I could do this part. I’m not afraid of sleeping in strange places, eating in stranger places or getting lost on a regular basis.  I can get lost in a wet paper sack but I never stay lost so I stopped worrying about it a long time ago, it’s just a fact of my life. I walked outside and sat in the sun with the telephone and called Terry’s son Shayne. Shayne is over 30, a grown up with a wife and a job and a mother he spends lots of time with.   I got lucky and got him on my first try calling him at his job in the garden department of the big chain store he works for.

 Shayne is an only child and he was badly shaken by my call. I explained the situation and told him I needed him at home more than his unconscious father needed him in Montana right then. He wanted badly to rush to Montana and we had to work through that, but he understood I needed him at home.  He got off the phone and went to find his boss so he could get to our house before I left. He and his wife Heather promised to take care of Torin and our horrible dog and the whiny cats.   Heather is allergic to the cats and dog. She may even be allergic to teenagers but she just sucked down more benadryl and took over at the house. My next call was to my best friend at work at St Martin’s University in the education department. 

 Faye is completely unflappable. If she had been on the Titanic she’d have every one calmed down and numbered in tidy lines with lunches packed for the trip in the boats. She’d be looking around for what else needed doing and she’d never mess up her hair even if she had to swim to shore. I told her what happened and all she said was, “What can I do?” I told her, “Go with me to Montana. I’m driving.”  I explained that I’d have to rent a car and that the flights out were arranged in such a way that I could probably beat the next plane into Billings on four wheels so I was taking my car and leaving in two hours. 

 She told me to pick up her in an hour, she was going home to pack and she’d see me then. I worked for 17 years at the Benedictine monk run university where she still works and almost everyone there still knows me.   I have a history there, albeit a checkered one, and this was just the first link in a long chain of love that I would not discover until later.   The monks at the abbey promised prayers and Faye’s boss gave her the go ahead to leave with me.

I opened the attic and scurried up the wooden drop down staircase to grab stored travel luggage. My road warrior training and road warrior gear meant I knew what to take with me, even running on autopilot in my hyper-speed multi-tasking mental state. I stood at the foot of the bed and looked into the closet and very coolly managed in a few minutes to select and pack enough clothes to get me through two weeks.  Another thing I have learned from traveling: There are always stores wherever you go in the United States. These stores will always have what you forgot so stop worrying if you remembered your shampoo or not.

 My big worry was how to tell my son Torin that Terry had been in an accident and hit a deer. Torin and I had had our own trauma the summer before in Southeastern Oregon when we hit not one but two deer in two separate accidents in one 20 minute period. My beautiful yellow car was drivable after that but rather crushed in the front on both sides—two impact points—and we had nasty deer bits stuck everywhere from the license plate holder to the roof rack. Torin had post traumatic deer disorder big time and he wouldn’t even get in a car at night in deer country.  The car was completely fixed, gas tank full, ready to roll and so was I.

 That morning I drove back to Torin’s school and had him called out of class to explain I was leaving and why. He looked shocked and pale but he couldn’t really grasp what had happened, I think we were both in shock. I loaded Tor and his school backpack into the car and headed for home where Heather and Shayne met us at the gate. I gave them the house keys, the telephone number of the hospital, hugged them all, tossed my suitcases and a box of music CDs in the car and took off, headed out to pick up Faye at her house. Faye had packed clothes, some food and bottled water and we were off on our 13 hour hegira to Montana.

 I was driving the first leg and I handed Faye the map quest directions to the hospital; North for 60 miles and then east in a straight line for 13 hours. The directions made us snicker when we read them—north on I-5 for 60 miles, east on I-90 for 976 miles, drive through Idaho and exit —in Billings, Montana.

 It was just after lunchtime when we left and we were both completely calm and on a mission. We crossed the Cascades and stopped at a Safeway in Ellensburg, Washington on the eastern side of the state to get dinner we could eat in the car while driving. It was weird to be walking around in the grocery store with a cart deciding on what kind of bottled pop I wanted when my world was crashing down around me in Billings. I didn’t know if Terry was alive or dead, I felt like I was sitting on my own shoulder making a movie, watching normal people with ordinary lives while mine was ending. 

We gassed up and headed east again. We stopped only for bathroom breaks and gasoline and went through an entire box of CDS, singing along with all of them we knew: Paul Simon’s Graceland, the Nylons, and lots of oldies. 

In Montana we saw the deer, big terrifying herds of deer on the roads in the middle of the night. Forest fires that year drove them out of the mountains and across the freeways looking for water and food.  We saw fire trucks and smelled smoke as we rolled through the Montana night to Billings.

We took turns driving; I was calm and collected until we hit Billings at 2:00 a.m. A freight train rolled over the crossing in front of us, so long and slow I wanted to get out of the car and push it off the tracks. The fear built again; the boa was back in my chest squeezing the breath out of me. I remember seeing a drunk Indian reeling along the tracks as the crossing gate went up and wondering what he was doing there, odd what details the mind harvests and saves.

 It felt like it took longer to find the hospital than it did to drive the first 976 miles. After a maddening ten minutes wandering around in the dark, we finally found the right parking lot, parked and got out of the car. I pushed open the hospital doors and we went into to the fluorescent lit middle-of- the- night empty corridors outside the cafeteria and up the elevator to the ICU. 

When the elevator opened, I saw big double doors with an empty waiting room; there was no obvious way in to the unit. I walked around the corner and found an entrance and pushed open the doors, surprising the nurse who bustled up to me, 2:30 a.m. is a little after visiting hours after all. She wanted to know who the hell I was and the doctor on duty came over to talk to me too. It turned out this was the doctor who had been on duty when the call came in about Terry’s accident and his life flight to Billings. She was the one who told them to get glucose into him from the get go, very possibly forestalling brain swelling. More medical information I never wanted to know, but I am so grateful to her in retrospect.

 The pair of them led us around the nurse’s station to Terry’s room. He was alive and in a coma but he was alive.  I was so surprised when I walked into his room. He didn’t look bad at all, I don’t know what I expected exactly, but he looked like Terry. He was swollen, scraped, bruised and broken but he was alive and he looked like Terry. Tubes in and out of everywhere, monitors all over the place, wires and beeps and equipment surrounded him. His head was swathed in bandages and the valve sticking out of the top made him look like a teakettle but he was alive.

It was a start.

Bookstores: Rabbit Heaven or Rabbit Hell?

I love bookstores….my favorite night out is a few hours at the local Barnes and Noble. I love perusing the magazines and drinking a latte. I carry my notebook and jot down ideas and quick drawings of things I see in books and magazines. I have been known to snap surreptitious photos with my camera phone, a magazine spy that’s me.

Don’t get me wrong, my entire allowance is usually spent on books and  I have to put a mental muzzle and leash on me and my wallet before I go in or I’d be carrying out shopping carts full of books. I love books and I loathe libraries.  I hate to give books I love back, which is a problem with libraries, they get upset when you keep their books.  I have finally trained myself to take the ones I buy that I am not madly in love with downtown and trade them in at the used bookstore for credit for what else? More books. 

Our local used bookstore is wonderful, but unfortunately it is staffed by earthy folks and book lovers who believe in natural living. No deodorant. I love the smell of books but not necessarily people who sell books, so I only work up the courage to take my nose in there about once every three months. I have found some amazing volumes there, fantastic out of print ancient travel books. I lust after travel books, especially those written right after travel became something fun to do for the rich and curious.  I digress….

Back to Barnes and Noble. I am proud to be a card carrying card member with probably the most traveled discount card in their catalog of card carriers. Not that they give a damn, but when I traveled for a living B/N was my escape from dreary hotel rooms from Miami, Florida to Medford, Oregon. Now its my escape from too many hours alone in the studio with three dogs and one cat for company. 

 I love my life, don’t get me wrong, but occaisonally I like to spend time with someone who is more than twelve inches tall at the shoulder and who doesn’t think books should be eaten.  I have noticed though that I have something in common with my dog Nellie. Nellie is a crazy old rat terrier with serious ball issues. She will chase a ball until she falls over sideways with her tongue draped on the ground. She chases balls at the beach and poops sand for days, she chases balls at the playfield and never notices Rottweilers or Dobermans as long as there is a wet slobber soaked ball to chase.

For Christmas this year Nellie received a bag of tennis balls. I mean a BAG of balls, a Hefty giant black garbage bag of balls. 400 tennis balls! The largesse, the lagniappe, the sheer volume of all those balls overwhelmed her dog sensibilities. I opened the bag and she got a whiff of tennis ball. She leaped into the bag like a gazelle on crack, picked up a ball, dropped it, picked up another ball, dropped it. Balls were rolling everywhere. and if she had pants she would have wet them. WHICH BALL DO I CHASE? I closed the bag at that point with about 20 balls rolling around loose. The poor dog literally couldn’t decide which ball to chase, she was like a cat with 20 escaping kittens. We scooped up the rest put them into a bucket and gave her just a few balls to settle her nerves, but if you need doggie balls my dog can hook you up.

I’m kind of like Nellie when I go to the bookstore. I’m fine for about an hour but then I start to get jittery and almost overwhelmed. Should I choose this? or this? Or maybe this? Have I looked here? What’s over there? Did I miss a wire/art/beading magazine? Where are the travel books and the maps? I am calling this BAHD  Bookstore Attention Hyperactivity Disorder and I have BAHD bad.  Still, I had a great time tonight, sketched out a bunch of stuff, sent an email to a friend when I found a book we both need and bought one book to read.  That’s on top of the six I’m reading right now. Did I mention I read about 1000 words a minute? Books for me last about as long as a bag of Snickers bars for normal mortals. Only thing left in the morning is the wrappers and regret for devouring my treat too fast.  I’m working on liking libraries better, imagine the improvement to my budget if I would just give the damned books back.