Category Archives: Down the Rabbit Hole:TBI

In September of 2006 my husband Terry was critically brain injured in motorcycle accident. This is the story of my journey from that day to this and how Traumatic Brain Injury affected us. I hope my travels down this strange road can help others facing similar journeys of their own.

Grace and Gratitude: Accepting Money is Awful

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The cover of the benefit thank you card

The cover of the benefit thank you card

This entry is going to be pretty brutal to write and I may hurt other kind people’s feelings, but it is my truth of what it was like from inside the fish bowl.  I am so grateful for the kindness of others. Other TBI families will face this too, wondering how to deal with people who care enough to contribute their time, money and themselves. Yes, they will be there for you.

There was a lesson to be learned from the open hearts and hard work others did on our behalf.  What was it?  To bow my stubborn proud I-can-do-it-myself head and accept what others gave with grace and a grateful heart. Above all, to  to pay it forward, because that for me is how the universe stays in balance.

Dec. 11th, 2006 | 12:15 pm

Terry is in Bakersfield now at the Centre for Neuroskills, and Torin and I are trying to paste the pieces of our lives back together. Resting up to be ready for what comes next, catching our breath and feeling like lost children.

This past weekend friends of Terry’s had a fundraiser for him/us. It wound up being stressful and successful. I got sucked in somehow doing a lot of the work for it which gave me the renegade creeps. Working to get other people to give us money made me feel  like I was somehow spidering around in the background and doing something skinky and bilking people. It was a horrible feeling and left me feeling sick and shivery.

On the positive side, I met a lot of Terry’s friends and people that believe in him. For a man who said to me, “I have no friends and I’m lonely”,  he has a lot of friends, just not the guy skills to hang out because he spent so many miserable years in a very bad marriage.   His ex came to the benefit and brought her smelly DOG to the restaurant. She swears he’s a service dog. For what? Misery? He wears a little scarf with service dog patches pinned to it. Jesus. She came in like she owned the place and said to me, “I’m sorry, who are you?” I said, “I’m Terry’s wife.” She started backing up and apologizing and saying her eyes weren’t working right. What?? It was pretty satisfying in a mean spirited way.benefit1

What I know about fundraisers is that on some level when people give you things there is ALWAYS some sort of thread of expectation attached. A lot of people donated money and I can feel there is some sort of expectation that they can dictate what their money is used for–
much like when I was on food stamps 100 years ago as a  mom in college–I never bought candy or anything frivolous because of the ugly looks on the faces of the cash customers. Even the event organizers want to count everything up and find out what was raised where and how. Let them do it. The only thing I know is that I’m NEVER doing this again, my spirit hasn’t made peace with accepting help yet.

I am done accepting free money. I think I’d rather starve. At first it was nice, but now I’m getting a little sourness around the edges. A fire chief told my friend the college president at a Rotary meeting that Terry didn’t need any benefit because EVERYTHING was paid for. Bull shit. Medically he’s got the Cadillac of coverage, but that sure doesn’t take into account that my medical insurance is now going to be Cobra at $800 per month –unless I can get my new boss to let me into the pool which is very possible.

It doesn’t take into account the fact that Terry cannot work and he may not be able to work again–he will get disability insurance at 60% for 55 months but not social security ever. Fire fighters don’t pay into that pool. And 60% of his salary only pays 60% of our bills–it doesn’t count the part where I have to fork over money to visit him in Bakersfield.It doesn’t count the refrigerator that died and has to be replaced or a leak in a roof that has to be fixed.  His firefighter’s pension got split down the middle when he got divorced. The ex-wife  with the stinky dog walked off with half of it, enough to make the house payment. Things are not going to be easy for us, but I am working now and I refuse to give up.

terry ticket

I’ve been trying to unpack, clean up and get ready for Christmas. We are going to have Christmas. We need hope and joy and to know there is going to be a tomorrow for us.  Yesterday I took my 7 and 9 year old granddaughters shopping for dresses to wear to the Nutcracker ballet in Seattle. I took my own savings out of the bank and decided this year I was going to make Christmas one to remember.  I can’t make a lot of impact on the future with my three thousand dollars,  but I can make a life long impact on the our memories and we can all stop and have an island of magic in the middle of this dark endless journey.

I am doing something special for each of my children and their families and it makes me happy. There won’t be anything under the tree because I’m doing this all now and it’s not about things to unwrap. These are gifts of the heart that last longer than a package. I guess I’m giving myself Christmas to hold the sadness at bay. Terry won’t be part of it this year but then again, he’s still stuck somewhere back around Halloween and learning to have an organized schedule. I won’t be able to visit him until later but I think that will be fine. It gives me time for me, which I need desperately about now.

So, fund raising? Money gifts from others? Nah, we’ll be fine without any more of them. I want to want to finish the thank you’s with gratitude and move on. I have to laugh again. I have had six comfortable years in my whole life–the last six. I love Terry so much for taking me and Torin on and giving us things like vacations and a nice car and dinner’s out and to him it was just the way things should be. Thank you for that, wherever you are tonight, Mr. T.

Going back to managing reduced resources is familiar territory and I know how to do this. Most of my life I have been poor– but happy and resourceful. My life has always involved Good Will for wardrobe and making do and being okay without a lot of stuff from department stores.    , I’m not some little princess who can’t get dirty or who falls apart. Sometimes I think people are offended because I won’t fall apart. If I did they could suck up some grief vapors and feel better.

I think my personal metaphor is that I’m like one of those old iron skillets. They get rusty and sometimes even get a crack in them–mine has one on the side. But if you steel wool them up and oil them and season them, they come right back and work again. They are useful, you can feed people with them and use them as a weapon if the need arises.

Life goes on. I’m managing, I’m not grieving because I don’t know what I’ve lost yet. But please don’t offer to raise funds for me, I’m likely to go all skillet on your ass.

Back from Billings, in the Belly of the Bird

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PA040186

 Fabulous nurses and the pilot. Getting Tired Now –, entry from my journal of September 25, 2006.

It’s Monday and I had high expectations for what the day would bring, news that would send us home if not in one piece in several pieces held together with the potential of wholeness. Today, I walked in to find a giant machine here. “Heart murmur, testing.” “Look is that a tear? Oh my God, please don’t let his heart have a rip in it. I just don’t want more bad.
I’m nearing the edge of what I can endure with equanimity. Today he had a swallow test, did he pass? I don’t know. He talks some but makes marginal sense. I show him cards from family and he doesn’t know what they are. I want the tube out, I want him to pass the test.The nurse in charge couldn’t tell me when he gets to go home, she said we wouldn’t know until about five minutes before it happened. Nice, how can you make any plans at all?
I don’t even know when to fly Faye in. Information would be good. This is frustrating and exhausting.

So now, two days later, we are finally getting kicked to the curb with not a lot of notice. September 27th we head home. Finding a way to get Terry from Montana to Olympia was an exercise in fear, frustration and ultimately, jubilation.  When the doctors began to make rehab noises, I started the hunt a week ago. Our lovely insurance company refused to pay to transport him anywhere but the closest rehab facility: Denver, Colorado. Home is Washington State, thousands of miles away and Denver was not an option for us, a bit difficult to just drop in and find friends to visit Terry and all that.

Loading onto the plane

Loading onto the plane

The only answer for us was a life flight home on a small plane. I began to investigate flights and it was all I could do not to faint at the cost. Five grand, which insurance didn’t cover and I had to find somewhere. Second Mortgages are the pot of expensive gold at the end of the rainbow, thank you Leprechauns, where ever you are.

PIECE OF ADVICE TO EVERYONE; GET A POWER OF ATTORNEY FOR YOUR LOVED ONES, MEDICAL AND THE OTHER KIND TOO.  IF YOU HAVE TO GET MONEY OR MAKE DECISIONS AND THE OTHER HALF HAS BEEN THE PRIMARY SIGNATORY ON ACCOUNTS WITHOUT THAT POA, YOU ARE DEAD IN THE WATER AND YOU CANNOT ACCESS FUNDS YOU NEED, OR TALK TO BANKS, ATTORNEYS OR ANYTHING WITHOUT PULLING ALL OF YOUR HAIR OUT AND THEIRS TOO.

Have I mentioned how annoying insurance companies are? Their goal seems to be to play with the lives of paper doll people and steam roll the real people flat in their quest to make sure investors have pots of money to spend.

Our case is not regular rehab. We have to have minders with Terry 24-7, because he is not mentally connecting to the world and he’s becoming more mobile every day as his bones heal. What happens when he has a working body, no balance and no judgment or way to know what’s real? He’s still very  physically crippled with all those broken ribs and lungs perforated in a few places, recovering from pneumonia, a broken neck, eye socket and arm, he is still learning to walk and eat and all the things we do without thinking, so  the type of rehabilitation available in a hospital setting is the next step.

On our way

On our way

The Emily Gamelan Pavilion  houses the St Peter Hospital rehab facility a few miles from our home, and he is booked there for the next step but getting him there in a hospital bed,  casts and bandages is the next mountain to climb. Enter the magnificent male nurses who joined us and the pilot on the life flight.

Nurses tending to Terry

Nurses tending to Terry

It was a crisp, cold morning when he was moved by ambulance to the plane. The nurses who were flying with us were the same two that flew him in to Billings from the accident. They were grinning ear to ear and so happy to see him. They had been pretty convinced he wouldn’t make it and seeing him beat the odds lifted us all, all the way home.  Terry was quiet, he was sedated for the flight and slept through most of it. I  loved it. I got to sit right behind the pilot in the plane and take in the view which was bathed in sunshine all the way home.

How often do normal pedestrian people see this view off the wing of a plane?

How often do normal pedestrian people see this view off the wing of a plane?

Don Bowman, Terry’s biker bud who was with him when they got in the accident is also a fire fighter. He had gotten permission from the fire department in Tumwater, two towns over, to have transport from Terry’s own fire department meet the plane at the local small airport.  I stepped out of the plane and burst into tears when I saw an entire group  with the rig walking out to meet us. Ear to ear grins were on every face and Terry recognized each and every one of them and said hello to them as they loaded him for the ride. It was wonderful and I didn’t even try to stop the tears rolling down my face. I realized later I lost an earring on the tarmac and I think its a fitting offering to the gods of  homecoming.  There were hurdles to get over and too much too accomplish, but seeing Torin and our  home and having Terry back in more or less one piece mended a big hole in the center of me.

Mt Rainier means we are home.

Mt Rainier means we are home.

The Red Lunchbox

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cALI TERRY SUNSET1

November 8, 2006 was the day our lives would start to change again. I drove back to the Centre for Neuroskills from the Sheraton hotel in Bakersfield, about a 20 minute drive, and I remember feeling the craziest sense of panic. I wanted to see Terry but I wanted to run away too. My hands were shaking and I felt like throwing up when I got to the apartment complex.

The apartments are gated  to keep the residents safe, you have to push a buzzer and tell them who you are to be allowed on the grounds. A disembodied female voice identified me and a loud buzz send the gate whirring and clanking open. I pulled slowly in and parked my rental car in the carport. In a normal apartment building it would have been full of cars. Here it was empty except for me and two stacks of chairs, the kind you see in cafeterias. I wondered idly why two stacks of blue chairs were sitting in a carport?  I turned off the key and just sat for a minute; breathing and getting myself to the point where I could smile and talk and make sense.

I rang the doorbell of Terry’s apartment and the door opened on a noisy non-verbal patient and helpers bustling around the living room and kitchen.”Come in, come in! We’re getting ready to go and Terry is waiting for you.” I was pulled easily into the morning bustle of getting ready to go to the center for a day’s work. Terry was dressed and standing in the kitchen, shoulders hunched and looking bewildered, the first day in a long road back had just begun.

This is the piece I wrote after that morning.IMG_0406

Red Lunchbox/TBI 2

They gave you a red lunchbox,
your name printed on it
in bold magic marker.
You knew it was a lunchbox
but not what it was for.
“Let’s make a sandwich”,
I said in my fake-cheery voice,
because I would not cry and I would not
share my sadness with you
like a drive in movie
where emotions are ten feet tall.
The butter knives were locked up
and I had to request one
like it was King Arthur’s mayonnaise sword.
47 minutes of careful direction:
walk to the refrigerator
choose bread
take out two slices
lay them on the counter
choose mayonnaise
can you open the jar?
Choose lunchmeat
it’s in that package.
You constructed your sandwich slowly
you were building the Taj Mahal of sandwiches
for your red lunchbox.
I left you there getting help with your coat,
your first day of therapy still ahead
I sat in the rental car and cried
for both of us and wondered who would help you with your sandwich tomorrow.

TBI: We Arrive at the Centre for Neuroskills

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Does Anyone Really Know What Time it is?

Does Anyone Really Know What Time it is?

 Bakersfield, November 7, 2006

Terry didn’t sleep well and got up early, 4:30 a.m., he thinks he’s going fishing again. I’ve learned to just say, “Your friends will pick you up later, right now we have to fill-in-the-blank”, and we move on.  He’s Captain Froot Loop today and not connecting to reality well. I’m glad we are on the way to the Centre, finally, some help.

We got to the Centre for Neuro Skills around ten in the morning. Map Quest got me right to the place and I drove right past it–twice. Its an unprepossessing building in an unprepossessing area, the centre has a strip malls and a big shopping center as its nearest neighbors. After we parked and went inside the ‘vibe’ changed radically. As we got there a boatload, okay a van load, of clients were delivered from their apartments to the Centre to get their therapy day started. I was  struck by the positive energy radiating from all the staff. Everyone who comes in gets a cheery greeting by name from the receptionist, the therapists and the workers. I feel so grateful for Terry’s physical health. The people who got off that bus were tragic in so many ways, many in walkers or wheelchairs or with other really obvious disabilities and I cannot see them making it all the way back.

We got a tour of the facility and within an hour Terry had been pulled away for his first therapy appointment. He was already on the charts/schedules before we got there. Apparently the first week or so he will be intensely scrutinized and viewed and examined and conclusions will be made as to what his needs are. They will be presenting a monster-sized report to the insurance company with their findings so time is of the essence.

After an hour or so in the waiting room watching other families and clients and wondering what we were all thinking, I was escorted back to meet Terry’s therapist. He showed me something called key chaining that Terry was doing.  It was hilarious and appalling all at once. I was sitting next to Terry in the office when J.M. asked Terry to repeat after him, “The sky is blue, the ground is brown, I am wearing a hat, this is my wife.” Then he asked Terry who was next to him and Terry answered promptly, “My hat.” So, I am in good company with Oliver Sacks and his book, The Man Who Mistook His Wife For A Hat.

Walking down endless circular corridors, I noticed that there are polka dot stickers on all the walls. I asked about them. It’s a test, and patients/clients have to work through finding their way using the dots. How long until Terry can even see a dot on the wall?

After we finished at the center today we went to the apartments dragging Terry’s giant suitcase with all his clothes and family photos and the things that make up a life. The apartments are in a really nice area of Bakersfield, gated and about ten miles away from the offices. The Centre believes that to reintegrate to the real world clients/patients need to learn to closely mimic the way the world works. This means buying their own food each week, learning to cook their meals, going on outings, doing their own laundry and as much as possible living like a normal person–all completely supervised and set in levels. Once a skill set is mastered they go to the next one until they are able to leave to live in the ‘real’ world or can go no further. The permanent residents who will never completely recover have a nice set of apartments of their own and caregivers based on their needs. I so hope that Terry can make it back to a better reality with us. It makes me lose my breath to think of him living here forever in the care of others.are you lost

The apartments are spacious, mid 70s in design, well kept and landscaped and nice. Terry is in a ground floor unit where he has his own bedroom and two roommates who share the general living quarters. I did his grocery shopping for him to get him started and put his food away on his own shelf in the refrigerator. They give the clients a set allowance for money and for outings each week. Anything like clothing and haircuts are out of the funds I left for him. He has help 24 hours a day  to relearn the skills he’s missing and they all seemed very cheerful and smart.

I learned a lot that I want to share but I’m just too  tired to put all the philosophy and such like out there and gnaw on it. I think Terry will get much better, I’m comfortable and pleased with the place he is in and so grateful we found them. I think he has far more damage than we first thought and that he won’t ever make it all the way back–but he’ll get really a lot better with time. So, I’m ending this day on a hopeful note. Tomorrow I go back to see him for the morning and in the afternoon  I say good bye and head to L.A. He kissed me good night tonight and settled in to his bed and seemed to be doing well. We’ll just have to wait and see at this point.

Good night Moon. Please make sure he can’t find a screwdriver and escape….

Hope is the thing with feathers.

Hope is the thing with feathers.

Coming Back to Earth: TBI and Re-entry

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Are you there?

Are you there?

November 2006, Bakersfield, California

We had a really nice day Sunday, it was crisp and clear and we drove out to Calico, which is a state-park-recreated-ghost-town-low-key-theme park kind of thing. It was fun and this weekend was their Christmas celebration. Santa was wandering around in a black cowboy hat–why not a white one? Doesn’t he watch old movies? The black hats are the BAD guys and the WHITE hats are the good guys. There was lots of live music all over town and we just slowly strolled around and poked our noses in here and there and had a good time. I did notice the quality of stuff for sale was appallingly low, I’m such a gift shop snob….

Since Terry woke me yesterday at 4:30 a.m. and we were on the road by 7:00 it was no surprise to be headed home by lunchtime. Unfortunately we hit holiday traffic. There is, so help me, ONE traffic light outside of Barstow at a 4-way intersection that leads to San Bernardino, Bakersfield, Barstow and the Mojave desert. The traffic was backed up 10 miles at a minimum. It took three hours to go 39 miles. Stop, roll forward as long as the green light was on, stop, etc.

Terry in Calico

Terry in Calico

Needless to say it was somewhat stressful on Terry and he didn’t sleep well last night. We had our usual sundowners episode in which he intended to go sleep in the car so he wouldn’t have to put up with “a bossy woman” (me). At the time he was dressed in a long sleeved flannel shirt his underwear and tennis shoes and clutching two blankets. I did manage to convince him to stay in and he managed to finally sleep but today he is having a Captain Froot Loop day.

We got to the Centre for Neuro Skills today around ten in the morning. Map Quest got me right there and I drove right past it–twice. Unprepossessing building in an unprepossessing area, the centre has strip malls and a big mall as its nearest neighbors. Once you get inside the door of the place the ‘vibe’ changes radically.

As we arrived, a boatload, okay a van load, of clients were delivered from their apartments to the Centre to get their therapy day started. I was much struck by the positive energy. Every patient who comes in gets a cheery greeting by name from the receptionist, the therapists and the workers.

We got a tour of the facility and within an hour Terry was pulled away for his first therapy appointment. He was already on the charts/schedules before we got there. Apparently the first week or so he will be intensely scrutinized and viewed and examined and conclusions will be made as to what his needs are. They will be presenting a monster-sized report to the insurance company with their findings so time is of the essence. I  feel so grateful for Terry’s physical health. The people who got off that bus were tragic in so many ways, many in walkers or wheelchairs or with other really obvious disabilities and I cannot see them making it all the way back in some cases.

I was so tired  that I lost the car keys this morning and then I found them right where they belonged. duh… and then I thought I lost my folio with all of Terry’s stuff in it—like his birth certificate–and the power of attorney–it turned up thank heavens, but it scared me seriously. I know I need rest and I hope I can find it now that at least for a while my problems are on someone else’s shoulders.

It seems very odd to be here in this room  tonight without Terry. I am so used to having him right next to me 24/7 and jumping at every sound that I find this very strange. I think I’ll have to decompress for awhile. After we finished at the center today we went to the apartments the Centre owns to check Terry in and meet his suite mates. They are in a really nice area of Bakersfield, gated and about ten miles away. The Centre believes that to reintegrate to the real world clients/patients need to closely mimic the way the world works. This means buying their own food each week at the grocery store, cooking their meals, going on outings, doing their laundry, and as much as possible living like a normal person–all completely and carefully supervised until they are able to graduate to the next level after proving that they have mastered specific tasks. The apartments are spacious  and Terry has his own room and two roommates in this three bedroom unit.

I did his grocery shopping for him to get him started.  They give the clients a set allowance for money and for outings each week. Anything like clothing and haircuts are out of the funds I left for him. He has help 24 hours a day that each  focus on different skills to help him relearn all the things he’s missing and they all seemed very cheerful and smart.
I learned a lot that I want to share but tonight I’m just too darned tired to put all the philosophy and such like out here and gnaw on it. I think he will get much better, I’m comfortable and pleased with the place he is in and so grateful we found them. I think he has far more damage than we first thought and that he won’t ever make it all the way back–but he’ll get really a lot better with time. So, I’m ending this day on a hopeful note.

Tomorrow I go back to see him for the morning and in the afternoon  I say good bye and head to L.A. He kissed me good night tonight and settled in to his bed and seemed to be doing well. We’ll just have to wait and see at this point. He doesn’t understand why he is in prison but the windows are barred and the whole place is gated. I am going to sleep now, for the first time in months without listening with one ear for him to get up and try to leave. Good night moon.

The Only Way Out is Through the Door: Strange Days in the Land of TBI

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Calico Door

Calico Door

location: Bakersfield Hilton
mood:     cranky   date: November 26, 2006

We made it to Bakersfield with everyone intact. Terry didn’t escape and I didn’t kill him.

We drove through the night and the guys, bless their firefighter hearts, pulled the monster motor home into a gas station in Bakersfield and filled it up. About $150.00 of gas cash from my pocket later, they dropped us at the car rental place at the Bakersfield airport and turned for home. I love them for being so generous, you can’t pay back that kind of caring. I got the car rented, loaded Terry and our luggage into it and headed for the hotel. I have schools in Bakersfield so I at least know my way around. Its nice to see the sunshine again and I’d like to think it makes Terry happy too.

Terry and friends outside the motorhome

Terry and friends outside the motorhome

We had lunch at a Mexican restaurant which was not memorable except that Terry dribbled salsa down his front and in spite of my sotto voce command of, “Don’t do that!” He ate the hot salsa with a spoon like soup. Note to self: find the tums and tell him they are dessert.

Terry, the sad prisoner

Terry, the sad prisoner

I am so glad there is only one more day before Terry goes to the center tomorrow. I would like to stick him in a wicker basket  on their porch with a note on his chest and drive off into the sunset, but instead I’ll be there, the dutiful wonderful wife at his side supporting him. And yes, I still am that but I’m tired, frustrated, sick of him and want this whole nightmare to be over. I feel so sad for him sometimes, he really is pitiful now in a lot of ways. This strong man is wandering around the hotel room hunched over without a shirt on, he looks like a little old 80 year with a saggy body because he’s lost so much weight.

In our room he is very agitated because he is sure we need to burn our clothes as part of the hotel fire protection. Thank God there are no matches. He pulls a case off a pillow because he needs a fusible link and we are off to the races. He demands the keys and tells me he is going to sleep in the car because I am such a bitch. Just what I need, my naked husband with the hotel coverlet wrapped around him running through the lobby. Perfect.

At this point, I finally call Shayne on his cell phone and make him talk to his father. Shayne can usually get him in off the ledge because Shayne is never with him for more than an hour and they are still at the “I love you, Dad, you are my hero phase.” Gag. I’m at the shut the fuck up and sit down phase. Poor Terry. Most of the time I cope just fine and things are as okay as they can be in this insane anteroom to hell.

He goes to bed starting at about 6:00 and comes out every five minutes to see if the t.v. is turned up too high or I’m still up or whatever. Of course I’m up. I’m still working until after midnight most nights at home. Terry throws his clothes on the floor and changes four or five times a day. I’m doing excess laundry, dishes, whatever it takes to keep the world running. No one is helping anymore. After the drama the grind sets in and friends fade. When I get my nerve up I call and ask for an hour here and there to go shopping for groceries.  We  had a ‘housekeeper’ for two days. What a mistake that was! She was supposed to watch Terry but was totally unable to relate to him in any way and mostly she smoked outside and sulked inside.  I called the agency and said to not send her back. It’s easier to do it myself.

I’m so glad we finally have at least a ray of hope. A window of chance to get him some help that I cannot provide. What are the parameters? If I baby him and put up with him will he just stall and stay in this terrible place? If I push him, when is it too much for both of us? I just don’t know, and I don’t think anyone does who is an unexpected caregiver.

After Terry talks to Shayne, Tor calls. He’s 14 and this is scary. He doesn’t know where Shayne and Heather are and it is getting dark.  He’s there and I’m here, helpless and mad.  Poor kid, one more lousy Terry thing for him to cope with. They were supposed to be at the house hours ago to stay there for the week I would be gone, so far no sign of them. I finally run them down and they say they are doing laundry.

Another hour passes, another call from Tor, home alone in the dark in in Olympia.

I finally get a call on my cell phone while sitting on the floor in front of the hotel room door to keep Terry from escaping naked to run through the corridors. “We can’t come, Heather has allergies to your cat.” I don’t even get mad, I just hang up. I will have time to be angry and never forgive them later. I  simply called my friend Faye, my go-to girl. She is in her pajamas but she jumps right in her car and comes over to spend the night, now that’s a friend. My son Corey who works two hours away from Olympia,  has promised to stay at my house with two dogs, two cats and one kid for the rest of the week. His poor wife and kids will be sacrificing him to the gods of TBI for the duration.

Calico Cowboys and Indians, California tourist town fun

Calico Cowboys and Indians, California tourist town fun

I am in my own one ring circus with Terry again. It’s 6:01 on Sunday morning. Terry decided he had to get up at 5:05–started to get up at 4:14. I want to kill him. He slept like a log from about 8:00 on due to the Trazodone I stuffed into him. It makes him giggle weirdly and he’s off balance but he sleeps. I’m glad Robin posts the ‘tidier’ emails about Terry because if only my posts were read this whole thing would look demented instead of just the demented moments that I seem to need to catch.

Its the day after after our amusement park ride that lasted 24 hours in the RV. I hate sitting sideways and I hate not being able to see out. It was like being in a big, rattling, banging, noisy, box with steamed up windows. Terry was miserable and sure we were kidnapping him and taking him somewhere evil. Keep in mind, the motorhome was generously loaned to us and that the drivers were two fire fighters who are his old friends. He just knew the cops were looking for us. He wouldn’t lay down in the bedroom because it was an unsecured area. So we had to bounce along most of the night in the living room sitting up. It was like being in a silverware drawer full of silverware in a non stop earthquake. Bang bang rattle rattle thump thump and Terry sulking.

We stopped in Oregon for dinner near Roseberg and he was surprised to see his parents in the parking lot. He had only had it explained every day for weeks. He was obviously having a very foggy day….but I’m glad his mom got to see him.

Going for a ride, stuck in traffic on a sunny day makes me happy.

Going for a ride, stuck in traffic on a sunny day makes me happy.

He seems a little more sane today now that he is awake and dressed. We are going to try to drive up to Calico, a touristy ghost town that he loves. I cannot sit in a hotel room with him for 24 hours or one of us will not survive. He loves adventures so I hope this will be fun and wear him out before bed time. Tomorrow is the big day he checks into the Centre for Neuroskills for God knows how long.

I will be driving on into LA and stay from Wednesday to Friday  to meet with the boss who hired me months ago and has put up with my crazy non-working schedule and paid me anyway. I am looking forward to getting at least part of my life back. I am dreading saying good-bye to Terry, it will be a relief and a rending. I  think I will cope by going out to dinner and getting  fairly drunk one night. It’s a start.

Bakersfield Begins

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Nowhere Stairs, Somewhere in Washington

Nowhere Stairs,
Somewhere in Washington

TBI 4: To Bakersfield With Love

Like a silverware drawer in an earthquake
this old motor home rattles with every hole,
trundling down highway 101 as if we were stuck inside a fat man running
slow, but we’ll get there. Trying to nap on the trampoline in the back room
counting the daylight between me and the sheets, sleeping with only one eye.

My prisoner thinks if it’s Tuesday this must be Pakistan,
or is it Germany today? He harvests words like a satellite lost in space,
picking up occasional beeps, giving them back
in random sentences that make me cock my head
like a confused dog. His brain refuses to tell him the war is over
or how to make a sandwich or the meaning of aphasia,
what we have here is a breakdown in communication.

My life inside out is just a pocket full of memory crumbs,
I  lay a trail south and hold hope like a birthday candle
lighting the way for two fire fighters, his friends in a previous edition
take turns driving through the night, to deliver him like a UPS package
shipped safely to Bakersfield in one of those big brown trucks.

He decides to run away at a rest stop somewhere outside Shasta,
puts on his shoes and coat, quietly opens the back door
I wake and catch his hand, “It’s so cold outside baby, wait
and leave in the morning.” Defeated, huddling in his jacket
he never takes off his baseball cap. Slouching in the ratty captain’s chairs
bolted to the floor of our cage we wait for morning to come for him.

I feel like a freight train clacking down the concrete,
bump ba dump bump ba dump into central California and the end of the road.
Today is November 27th and time’s dead star collapses inward
becoming a new map that leads to April when I will see him again.
I feel like my grandma’s quilt, the one she made for a five-year-old me
from scraps of clothes we loved or hated, tied at the corners
with red yarn and washed so much it has holes now like me and him.

I want to leave, I think too much. I’m past the prayers and the bargains
God. I’m working on acceptance and escape. No one told me
escape is the stage of grief that carries guilt like a stone in its greasy backpack,
Bakersfield and the Facility are waiting surrounded by fields of grapes.

I will hand him over my burden, my love, my focus
will change like a reindeer molting, I’ll lose winter fur and grow antlers
to fight insurance companies. I’ll be listening at the door with a glass of wine
in my hand, waiting for April to call, hoping he wrote down my number.

Push and Pull

Push and Pull

TBI: Coming Back From the Edge, Caring and Cared For 2013

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Its hard sometimes to see the need for support for a TBI victim, they can look comepletely normal but still feel so lost, navigating a changed landscape.

Tonight Terry showed me an email from a list he belongs to, his Traumatic Brain Injury Support group. The man who wrote the entry posted this quote from a dear friend of his. I think it is so true and so telling and it speaks to the TBI survivors point of view, one that us “normal folk” may sometimes miss.

“Brain injury at best is one of the harshest most sinister life changing disabilities a person can experience. It is not fair how it strips pieces of who we once were to the point where we must recreate ourselves, leaving us many times trying to navigate this hell. All the time those who we need the most cannot even see it, and by the time people get this figured out we have caused so much damage to the infrastructure of our lives.

So here is this completely new person, with no support, no understanding. Many times they are labeled bi-polar, on drugs, crazy. All that is happening is this reformation, relearning of any of the  skills we lost, and on many survivors’ minds is this unfairness of how people treated us along this journey. Resentment, anger and even hate and rage have come from this.

TBI victims can be called bi-polar, or crazy–mad as a hatter– or on drugs, when what they really are is re-inventing and re-learning themselves with little or no help.

The time is now, that we the survivors of the world need to let new survivors know what could be in store, we need to connect our disability community to pose it in a position of power, not one of division and weakness. 65 million of us.

Together we can achieve anything!

Together there is nothing we cannot achieve. Alone we get lost in the corners of society.”  I believe a man named Peter Hoecherl wrote this and truer words were never spoken.

I am caught on one side of the chasm that is TBI, and being the one left to try to pick up the pieces and lend support to a survivor has been the hardest thing I have ever done. I don’t regret a minute of it and Terry and I are damned lucky and we know it. Lucky because Terry was a firefighter with truly excellent insurance that paid for his care in a rehab facility like the Centre for Neuroskills in Bakersfield.

Its been a crazy ride, getting back from there to here.

Not very many Americans have access to that level of care. Without it, Terry could easily have lost the forward momentum he fought so hard for. He made it all the way back. Today he is about 95% of the man he was. Here’s the odd part, he’s a different man now. Its like being married to his twin. Brain trauma does some weird shit to people.

I saw the lost part, the angry part, the confused part for myself as Terry came back from the edge. Again, brain trauma is truly crazy-making because the victim can look completely normal outside and be lost in the woods inside. Marriages break up and families shatter because care givers are as lost and confused as the traumatic brain injury victims.

Sometimes we don’t even know who we are and that’s a terrible feeling.

When Terry recovered and returned from his traumatic brain injury and returned to his job after less than a year of recovery and rehab, a miracle in itself,  he was welcomed warmly. Yay..round of applause…and then a lot (not all)  of his co-workers treated him like a crazy leper because he had been injured and they knew about it, they seemed afraid to give him back the work he had done before and avoided talking with or spending time with him. He felt like a charity case and it was maddening and frustrating.

He felt isolated, alone, and like the only one in the world for a long time.

My advice was to give it time and give his work his best because something would come along and eclipse his accident and it would be forgotten. Sure enough, it took over a year and he worked his arse off, but other things came along and the community memory faded. He is a fully-functioning team member and very much appreciated as one of the best in the business at what he does.

I still  take a lot of the extra load off around here for him, I’m now the bill payer and the banker and the paper pusher because I can do it. Terry gets tired. That’s a side effect that will never go away. Rebuilding all those brain cells and neural pathways will take always take extra energy and I seem to have enough for both of us.

Just because I pick up the slack doesn’t mean I’m a saint, I get tired and cranky and resentful of the fiscal hole we’ve had to climb out of after a major accident like Terry’s. I could still kick him on a regular basis for getting on his motorcycle at night in deer country and doing this to us, but I think the price he has paid has been high enough.

That’s the thing to remember, the price TBI folks pay is never paid in full.  I think that’s why I started to write this blog, to pay all the love and care we got forward. I thought of all the families lost in the dark without a candle or a match and wondering what is going to happen to us? What could  happen? What comes next? How will I cope?  What’s out there in the dark?

One day at a time is how we take it.

I remember right after Terry got back to Olympia, he was in medical rehab for a broken neck, broken ribs and broken wrist and his short term memory was gone. I was home by myself and I googled Traumatic Brain Injury Support in Washington State. I didn’t find much, but I did stumble into a chat room of traumatic brain injury survivors and friends. I will never forget one 20 something girl telling me not to take more than one day at a time, she assured me it would get better. She told me her dad had been brain injured and her parents were still together and happy ten years later. At Christmas her mom bought and wrapped a present for her dad to give her mom and the giving and opening of that gift was special to both of them every year. It does get better, nothing is static, everything changes.

She was right. It did get better. That’s the thing that a lot of people don’t realize about brain injury. If you keep challenging yourself you just keep getting better. There is no stopping point and you set your own speed limit. We made it. I’m not exactly sure how, but its Valentine’s Day now and Terry and I have a lot to celebrate. I’ll go back to the Chronicles and the Adventure of how we got from there to here tomorrow but right this minute, I’m celebrating us!

Today, we celebrate us. Terry now.

 

TBI and Philosophy, Keyhole Moving

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Before Bakersfield, Terry looking sad and lost with wonderful John Neff. John went to bat for Terry and believed he could make it all the way and saved his job for him. John died last year and we all miss him terribly. I’m glad Terry got to prove John’s faith in him was justified. John Neff, my angel number one.

11/20/2006 We must have done something right. Terry has been accepted at the Centre for Neuroskills in Bakersfield. We leave right after Thanksgiving in a borrowed motorhome with two wonderful firefighter friends at the helm. I will pay for the gas but that’s the easy part. I finally have hope.

It’s time for a little philosophy.  I know everyone is saddened by the changes in Terry. He’s not the same proud independent guy we remember and its hard. It takes me down at strange times– grocery stores, pieces of music on the radio, driving down the road–I try not to cry and to just put one foot in front of the other but more than that, I always come back.

I think I am an odd breed of cat and it helps me cope. From the time I was a little kid I can remember getting up every morning and thinking something wonderful would happen that day. I used to call it my butterfly feeling and it actually physically tickled in my chest like feathers or bubbles. I never lost it. Every day is new and special and wonderful things happen.

It may be just seeing something with new eyes, finding a penny on the ground, making someone smile or better–laugh out loud. I have my tattoo that says Hope is a Thing with Feathers (Emily Dickinson) and my featherbracelet to remind me too. Yes, I get down but I don’t stay down and you shouldn’t either. I appreciate all of you holding us up with your wings–I can feel the breeze from all my angels out there every single day.

To help you understand Traumatic Brain Injury and why I have to fight so hard to make sure Terry can stay at the Centre until he has made all the progress he can, I give you the following:

In America we expect to take a pill, get an operation, or apply a cast, bandage or something orthopedic and impersonal to fix people. We look for the magic bullet and the magic gun and we have a hard time understanding that with brain injury the magic is in the hearts, hands and heads of the people who understand how to help. The magic is the depth of education and study they go through to even begin to be able to help.

The brain is the last frontier, internal space rather than external, and I am so glad the Centre for Neuro Skills is full of intrepid “explorers  and rocket scientists”, so to speak, who will help Terry back from his long dark journey. If it can be done I think they can do it.

With brain injury the only thing that can help is humans. Humans have to be the medical devices and their brains and hearts are tools of equal importance.

Terry and Jerry Warnock, a firefighter EMT and the man who called me to break the news of Terry’s accident. The two of them and their motorcycles went way back. This was at the fire department a day or two before we left.

To help someone with TBI is like moving all the furniture in a house that’s been in an earthquake through a keyhole. When the helpers arrive, the lights are out most of the time in the house and even seeing into the windows is problematic. When the lights are on everyone moves fast and does as much as they can. Moving furniture this way is hard, and the owner of the house is exhausted by all the racket coming in the keyhole and he retires to sleep and get away from it frequently. The helpers know this, and they take the dark time to plan strategy for the minutes they have light because moving furniture in the dark through a keyhole is really hard.

As time goes by they help the owner of the house find the lamps one by one and get them turned on; whether it takes rewiring the fixture, putting in a new bulb or just turning the switch. That’s the assessment part.  After the lights stay on most of the time they can peek in the keyhole and see the house is a mess. They have to go about figuring out how to pick up couches and chairs from where they were knocked over and it’s hard. Sometimes it can’t be done and they just have to go around the overturned furniture.

With luck and perseverance, the owner of the house can learn how to turn the key from the inside and open the door. When the door is opened, sometimes the helpers can help the owner go into other rooms and find furniture that will fit. It’s not the same but the couch works with the wallpaper so they go for it and it works out, a new couch is much better than no couch. At this point friends can come and sit on the couch and talk and find out how to go forward together.

With God’s help, time, and the help of a lot of human furniture movers who are seriously trained specialists in Keyhole Moving, Terry will have a house/brain that is a home again and you will all be there with us when he does come back to Olympia.

Nola and Terry. Nola is angel number two for me. She handled paperwork, ran interference, answered questions and was there every step of the way for fire department insurance issues and questions.

Keep those wings beating my angels–we love you all.

This was written just as we left for Bakersfield to begin the next Chapter of Terry’s story.

The Bureaucratic Bridge

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The Bureaucratic Bridge-or how we got Terry from here to There. October 2006.

This is the guy I married, Christmas time delivering toys with Santa on an antique fire truck.

Where was I? I think I left off with our turn in the psych ward at St Peter’s Hospital.  Somewhere around there I hit the point of desperation, and blessedly due to a chain of prayers and circumstances we found Dr Joe Moisan, my personal angel.

Terry’s sister Penny had Dr Joe as a visiting faculty lecturer in a college psych class. She gave me his phone number and begged me to call him, she thought he could help us. He agreed to see Sherry and me the same morning I called. We drove the hour to Grapeview out on the Hood Canal to his home on the water.  We were there so long his wife had to make us tuna sandwiches for lunch.

Dr Joe cut through more malarkey in one more morning than I cut through in two months. Amazing. Joe called and had an appointment with Social Security set up, even though Terry didn’t qualify because fire fighters here are self-insured, just one more hoop to jump through.

He  made a phone call to Bakersfield, California to the Centre for Neuroskills because he thought the facility might be the perfect place to help Terry. That turned out to be a life changing call. We got an appointment set up in the Seattle area with a neuropsychologist to assess Terry’s level of cognizance and exactly where his injury was causing problems.

I dreaded the drive to Seattle with a crazy guy who might jump out of the car any minute, but I would have walked and carried him to get the help we needed. I wrote out a check for the down payment on Dr Joe’s service and thanked God for good insurance and a great ombudsman.

He guided me through the next few weeks and made the drive to meet Terry one evening. Doctor Joe gave me excellent advice on techniques to deflect some of the head-on battles I was running into with Terry. The care and information we give caregivers is abysmal, no wonder they burn out and fall apart, me included. Just knowing about how to handle things with deflection or distraction was wonderful and made life so much better.

This is what I had at home. A truculent, cranky, crabby man I didn’t know any more. This doesn’t even look like Terry.

In the middle of hoping we could get Terry into a facility dedicated only to brain trauma rehab, I still had hoops to jump through every day with mountains of disability paperwork to fill out. Duplicate statements had to be gathered from a raft of doctors, policemen, caregivers and our medical insurance providers. I quickly filled an entire drawer in my filing cabinet with paperwork .I still have it. It amazed me how many times I had to send the same stuff to the same bureaucrats.

I have to say our medical insurance people were wonderful; we have two companies because Terry is a retired fire fighter. Both providers gave us an ombudsman which helped a lot and it’s something I recommend anyone dealing with a huge medical issue. Insist on your own person who is a point of contact.

The Social Security disability interview was hilarious. The lovely young lady doing the interviewing insisted Dr Joe and I sit in the back row while she spoke to Terry and asked him simple questions. He got his name right, but not his birth date. Then she started on the hard stuff, like his mother’s name and where she was born. We were off to the races and I had to fight to keep my mouth shut. Doctor Joe laid a restraining hand on my arm and signaled to let them flounder away. Terry was great; he made it up as he went along. I learned along my way through the brain trauma swamp this is called confabulation. The brain takes snippets of information that may be correct and just pastes up anything it can find to make whole cloth. It was fun to watch as she just got more and more lost before she finally put her pencil down and sputtered to a bewildered stop.

We got a form letter from Social Security two weeks later saying he didn’t qualify for Social Security Disability because he was a self-insured fire fighter, which I promptly sent along to the disability people, checking off the just one more exercise-in-stupidity-box.

Sherry and I took Terry to Seattle  on a damp fall day to see the neuro doc, carefully making sure Terry couldn’t get the door to the car open from inside. Thank you for childproof locks, Dodge Company. It took hours and he flubbed almost everything. The doctor was able to pinpoint where the injury was and what was going on which was more light shed than we had had to that point.

Before we knew it, the Centre for Neuroskills had sent a caseworker all the way from Bakersfield to visit us at home. The poor guy arrived on a soaking wet pouring-down-rain day from sunny California. He looked like a drowned cat but he knew his stuff and he told Dr Joe and me he thought Terry would be a good candidate for CNS. Except. Except that Terry’s birthday made him a week too old for the Centre.  Thankfully, they bent the rules and accepted him as an inpatient for as long as it would take, they thought about a year. For the first time I could see a light at the end of the tunnel that wasn’t the headlight of an oncoming train. There was help on the way and I felt like crying but didn’t have time.

I have to say, TBI care is seriously expensive help. If I had been the one who killed a deer with my head I would be stashed somewhere local, degrading into an inconvenient brick around the family’s neck. Once again, being a fire fighter is a wonderful thing. In return for running into burning buildings and pulling people in pieces out of cars after accidents, the fire department takes care of their own, and does it well. I’ll say it again, I am eternally grateful.