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TBI: We Arrive at the Centre for Neuroskills

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

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

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.

Danny and Mr Tolkien

 

The Quest, fulfilled.

Once upon a time, the June I turned 19, I moved clear across the United States from my Southern California roots to Alabama and then Kentucky to be with my helicopter flight school attending husband. For us and the other young couples in the air cav, time together would be measured in months, before they all shipped out. We lived in the present, there was no future that we could see from where we were standing.

I didn’t mind being away from home. I was more fascinated than lonely and I didn’t complain when my pilot husband was off for days training to go to Vietnam and fly, he loved helicopters and the army. For me, there was too much to experience, see, do and understand in this new alien place. I was an Air Force brat and the military lonely lifestyle was something that was second nature in my family.

My chariot of choice in my explorations was a black and yellow, brand new 1967 Barracuda convertible with a huge engine and straight pipes. Gas was 25 cents a gallon and that car let me explore old towns, old cemeteries, and all the history I could find within a day’s drive. I hated the muggy weather, the daily rain and the snakes, but still…. driving down a tree lined street with houses looking like Tara on either side made up for a lot.

In November, we moved to Fort Campbell, Kentucky, assigned to the 101st Airborne. The winter actually came in Kentucky, with snow, ice and cold. I bought boots and a black furry coat with a hood and even a pair of long johns. Because it was too cold to explore for the California Kid, I discovered the base library and changed my literary life forever.

I was hunting through the shelves and found a book called ‘The Hobbit’ by J.R.R. Tolkien. The end papers were maps and it looked like a giant fairy tale. I checked it out and devoured it. I discovered there were four books making up the cycle, and the Hobbit was just the beginning.  I trekked back to the library and the only one on the shelf was the second book. I read it anyway. I went back and this time I found the last book and read that. In weeks of waiting, I never found the first book and I remember being so frustrated because there were such gaps in the story. There were no bookstores close enough to either buy or order the book and time was moving on. My husband was shipped out and I was shipped home, back to California.

Danny took this photo of me in 1969

I was 18 when I got married, right out of high school and in a haze of doomed romance. I married someone I really didn’t like and I knew it. I even tried to get out of it, but my mother had already paid for the wedding and I was going to go through it dead or alive according to her. The best thing about that marriage was finally escaping my mother’s claws and her influence. She went on to completely destroy my brother’s life and my sister’s, but my trajectory was up and out and I never looked back. I left the pilot, I couldn’t do it anymore. He returned in one piece and went on to remarry and have a good life in Oregon.

Art car, Sausalito, 2005

I had my life back and the summer I was 20, I went on a long camping trip, again in that Barracuda, up the California coast with my friend Danny. Danny’s fiancee Brenda had just dumped him, becoming unengaged after a full year, and running off with a guy who was wanted for punching a cop in Dallas. Hey, it was the 60s and we were young and full of angst and hope and upheaval. I was half in love with him, he was still half in love with her, it was the stuff of bad novels and it made for a memorable trip which included skinny dipping in the Russian River, exploring Big Sur and every inch of highway 1 before it was a heavily traveled tourist trap.

Hippie Harbor, 2007, Sausalito still has its soul

San Francisco was heaven and Sausalito was even better. In 1968, Sausalito was a sleepy, hippie, fishing town. It is now big money but there are still patches of that vibe and I love going back and finding it to this day. Sausalito also had an amazing bookstore and in that store I found on 9/23/68 all FOUR volumes of the Lord of the Rings plus the Hobbit. I will never forget that store, that moment, or that day. Danny bought those four paperbacks for me and as our budget was small, it was an enormous gift. The books were the Ballantine Books authorized editions, each one was 95 cents.

Art Car, Sausalito, with a message for me

That was the cherry on the top of the trip for me. We spent a few more days exploring and camping and resisting returning, but jobs were calling us home and funds were getting low. We made it to Eureka, California before we turned around to drive almost straight through 12 hours to Redlands and home. The real world came back with a crash and life went on for us, but those weeks out of time were magic. It was the start of our relationship and we wound up with marrying and having three amazing sons.

Sausalito mailbox

Our marriage didn’t last forever because I am very bad at the art of marriage, we even tried twice. We made it through the bad parts and our friendship was close and it was forever.  I thought someday we’d wind up rocking on a porch and arguing about politics.

Dan Snow, taken in Palm Springs, 1968

Dan died on April 9, 2002, after a recurrence non-Hodgkins lymphoma surrounded by his sons and his wife, Dorothy, the real love of his life.  I’m glad they found each other in time because if anyone deserved to be loved, it was Danny. I still miss him and when I look at my boys, I see their dad so clearly. Corey looks most like him and the resemblance is startling as Corey gets older. Joel moves most like him, he has his father’s physical gestures and joy in living. Josh is the passionate one, Danny could argue all night long and drill you into the ground when he cared, Josh can do the same thing and does.

As for me, I’m the one who remembers him as a young man, the twenty-four old with the longest eyelashes I ever saw and as much curiousity as I had about what was around the next corner. We had fun, we really did, and the best years of our lives were spent together. For a very long time, I religiously read all four of the Tolkien books every September, the anniversary of fulfilling my quest to read the last book, and perhaps to remember a magic moment in my life when everything was as perfect as it ever gets.

The books are now getting tattered and fragile and yellowed, they have obviously been loved, and one had a fishbowl break in its vicinity years ago, but it was saved and dried out.The Fellowship of the Ring had a corner land in a coffee cup, but that too passed, and nowadays my quest for the fourth book filled, they are on my shelf of best loved books and most cherished memories of There and Back Again.

 

Saint Paddy’s Pie

When I was a kid one of my favorite things on the planet was that dopey Bing Crosby song that goes, “Who threw the overalls in Mrs Murphy’s chowder, nobody spoke so he shouted all the louder, its an Irish trick that’s true, and I can lick the mick that threw, the overalls in Mrs. Murphy’s chowwww-derrr!” I  hated chowder and clams but I loved what my mom called, “Mrs. Murphy’s Potatoes.” Translation: twice baked potatoes stuffed with crab, cheddar cheese, and onions. Along with butter, garlic, salt and pepper and milk.

One of my other favorite things was Shepherd’s Pie, the old standby made with mashed potatoes, ground beef, onions, gravy and vegies and of course, cheese. Two recipes I am happy to share if I hear requests for them. My chef son touts his version made with ground lamb and parnsips in place of mashed potatoes, exotic no?

The ingredients, and dig the beautiful vintage Tupperware vegie steamer. Coolest toy. Ever.

Last night I wanted Mrs Murphy’s taters, but I was too lazy to put on going-to-the-store clothes to procure potatoes. Those clothes being   something besides a paint splattered tee shirt and equally paint splattered sweat pants so I poked around in the pantry and came up with the brilliant idea of Mrs Murphy’s Pie, a cross bred tasty treat. Today is Saint Patrick’s day so the nomenclature fits like a cheap tiara on a prom queen. Perfect, but don’t look too close…

To make this lovely tasty dish you will need:

A 13X9″ baking pan or something somewhere close in size. Smaller pan, deeper pie, its all good.

An onion minced fairly fine

About 2 tsps of garlic powder, adjust the level to your own garlic love

About 1.5 tsp of salt. If you cook some bacon and toss it in for fun, lighten up on the salt.

Pepper to taste

3 packages of those great Idahoan mashed potato mixes, inexpensive and easy. (Substitute 6-8 cups of any other mashed potatoes made according to package directions.)

2 cans of crab. I used Trader Joes, the size of large tuna cans.

1 stick of butter, more or less, again, ask yourself how much do I love this butter? Room temperature or melted.

2 eggs

Some milk, 1/2 cup or so

1 package of cheese shredded or about 2 cups ground up by you.

Asparagus, you could substute peas too. Cook the asparagus tips and mid sections, to medium done, not mushy.

Grease/spray grease the bottom of the pan and spread two cups/one package of the potatoes made according to the package on the the bottom of the pan. This is your ‘bottom crust’

In a large bowl, mix up another package of mashed potatoes, (drain and rinse the crab) toss in the crab, asparagus chopped small, garlic, onions (minced) and about 3/4 package of cheese along with the butter. Crack the eggs over the top and mix the whole mess together. If it’s quite thick put in up to 1/2 cup milk.Salt and pepper to taste, use a light hand here.

Dumped in a bowl and stirred up good, what good be easier?

Put this layer on top of the layer you already put in, it doesn’t matter if they mix a bit. Spread it with a spatula. Mix up and spread the last layer of potatoes over the top. Spread the last of the cheese over all and pop in a 425 oven for about 30 minutes. It should brown up and the cheese will get all nice and melted. If it is isn’t as brown as you like, slide in the broiler for a few minutes.

Slice into squares and serve with a green salad. This was so easy to make. I think it may become one of those pantry fall backs, where you always have some ingredients handy and toss in everything else that you find.

The finished product, easy-peasy and sooo good!

I’d love to hear your ideas for other versions too.

 

Trajectory

I’m not sure I want to share this post, but I definitely want/need to write it. I am headed back to California in the morning, most likely for the last time to ‘visit’ my family there. My dad died in the fall, I miss him terribly, and my 93 year old mother is going off the rails slowly but surely.

Its odd how normal she sounds when I talk to her, but there are breaks where she yells and screams at me for what  she assumes is criticism or comments on her life and how she is living it. This is a woman who has never had a single happy day in her life as far as I can tell. The analogy for my mother is the kid on Christmas morning with too many presents who rips through all of them and looks for more. She has never taken the time to enjoy being in the moment. There is always another prize to acquire, another Thing to get, hold and hoard.

I did have a really happy childhood in many ways, probably because I am the antitheses of mom. I seized every single joyful moment and relished it like another one was never coming. I’m still that way.

I fight my weight and the idea that there is never another good thing coming is what informs a lot of my ingrained behavior.  I may never completely get my own mental garden completely weeded.  I had parents who had Rules for Them and other Rules for Us, my brother and me. My father was like the spoiled oldest son, mother kept him in line by indulging him ala Life With Father. Best porkchop, heart of the watermelon, only the best for dad and ultimately my brother, the Golden Child.

I think my dad died to escape. My father was no angel. He was charming, weak and spoiled and he loved my mother more than life itself. They yelled, screamed, threw things and fought incessantly. I didn’t know some families weren’t like that until I was old enough to spend the night at friend’s houses.

They kept boxes of candy in their dresser drawers and didn’t share them. My mom was always working on a Whitman’s Sampler. We were adept at looting the lower layers invisibly. She turned us into sneaks and thieves and liars because we were so afraid of punishment. My brother lost his moral compass then and he couldn’t steer true north, even after we were grown up.

We weren’t allowed to eat between meals. I can remember as a teenager earning my own money in a part-time job, starving after school but afraid to be caught eating. I could wolf down a burger and a coke in the space of two blocks in my friend Gayle’s Volkswagen. My mother was always dramatic, violent anger and sweetness in the same ten minute period, it was crazy making. When she hit menopause she got a bad case of violent crazy and the happiness pretty much left us, I spent my teenage years at home being yelled at and belittled and hit with hands and a belt. The psychological abuse from the person who was supposed to love me unconditionally was the worst of it all.

There was a level of crazy there that I still don’t quite understand. I know why she is the way she is and a lot of what happened to her but I still can’t quite grasp it even after all these years. We had some insanely happy times, camping in the desert, going on fishing trips in Colorado and decorating for holidays and so much more. I have wonderful memories but I think they are more intense and lit up because there was always an undercurrent of fear running through the good parts.

My brother never escaped her orbit. He is now 63 and a complete failure at everything. He put a business up his nose in the good old cocaine days, destroyed two marriages and families, and got deeply into street drugs. He has cleaned up the drugs but the addition of an alcoholic stupid girlfriend iced that cake. He has lost every job he has managed to land through his own actions.

Both he and my mother have never been able to accept responsibility for their lives and actions. He lost his last job and his home a few years ago and landed on the street with two big dogs and the drunken girlfriend. They showed up on my parents doorstep and never left. My brother has never been able to escape his mother’s barbed wired apron strings. He lives in the same small town where the police know him by name and his reputation precedes him. He is so emotionally crippled he can only talk about what he’s going to do and where’s he going to go, but he can’t make it happen. His mouth is foul and so is his temper, he is unemployable in part because every job interview he gets my good old mom calls the business and says don’t hire my son the drug addict. She does it from pure malice but she won’t ever admit it.

Just like she won’t admit the 33 phone calls to the police in the last few months since my dad died. The police are now so tired of her and her fabrications that they are threatening to lock her in an old folks home and confiscate her estate. She doesn’t understand this. She doesn’t understand a lot of things.

Her house is completely wrecked, her yard and property are trashed and fouled beyond belief. She has had a string of ex junkies who “helped” her,  helped carry off everything of value is more like it, while selling drugs from the guesthouse. This is what I’m having to walk into. I am not looking forward to this trip.

I feel like owe this last trip to my dad. I left the house on bad terms two years ago and said I would never be back. My dad’s last words to me face to face were, “Next time you see me I’ll be planted in the ground.” We were both sobbing at the time. He was right. I don’t want to go but as the only sane member of my family of origin I feel compelled to at least understand and try to make some decisions that will affect my mother’s ability to live her life. She just turned 93 and I can say truthfully, I do not love her, I do not respect her, but I do respect what a mother is and that these people are family, like it or not.

I escaped when I was 18 years old. My trajectory was up and out and I never looked back, I hate having to do this with all my heart but my own moral compass says I must give it this one final effort before I let go of the rope on their sinking ship.Yesteerday, I fielded 13 insane phone calls from them all, I have no idea what today will hold. I have to give it to God and the universe to keep me on course through this.

We are planning on camping in the yard because the house is so awful. God bless Terry, he is going with me for the one to two weeks, depending on how much I can actually stand.

I will be writing posts from the war zone. Stay tuned.

 

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

 

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

 

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

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.

Project Snowman Conversion

 

Snowmen formerly known as Salt Shakers

I can never resist a saltshaker, especially those big heavy glass ones that no one uses anymore. Glass bottles make me happy too, especially little ones. But what do you do with a batch of bottles? In this case Snowman conversion.

I started with this idea last week and made a batch of heads using Celluclay, a papier mache mix that comes pre-packaged. Add water, squish until its the consistency of butter and shape. I keep bamboo skewers around and they are the perfect head handle. Macabre, I tried not think of a head on a stake… I dried the heads for a few days and then got to work.

Saltshaker, German glitter, paper mache head made of celluclay papier mache mix, great stuff!

The next step is to wash and dry your containers–save the tops, especially the cool metal ones. I decided I wanted to put something inside my containers.

I like words in the bottles

I couldn’t find quotes I liked so I wrote snowmen haiku and printed them out. I printed my haiku on silver paper in landscape format, that’s lengthwise, because I knew I would be cutting them out in a long narrow strip.

Haiku for Christmas

Meyer Imports on line carries exquisite, gorgeous, fantastic German glass glitter. Its the stuff that is made of glass, shiny and old school. I like that for sparkly outsides but I have discovered glitter inside a jar can cloud the walls with a static electricity cling. The answer? Tiny glass beads. They are available in the glitter section of your local craft store and come in a ton of colors, Martha Stewart makes my favorites in color, but Meyer Imports gets my vote for buying a large quantity.

Glass beads, just enough for a “pop” of snow and a haiku in place.

I carefully rolled my haiku around a pencil and worked them into the bottle necks, using a skewer to help them untangle and unroll. A quick pour of about a 1/4 inch of beads for effect and a few pearls for pretty and the bodies were done.

I took the heads and fitted them on each bottle because each one has its own personality and it was fun to decide where they looked best. Before they got glued down with E6000 killer glue, I used my dremel to make a hole for the nose, a toothpick in its original life. I trimmed the toothpick to fit for length and put on a quick coat of paint with a Qtip.

I made small holes for the eyes and mouth.

I used my pointy tool, which is really for starting nail holes, to ‘drill out’ a little opening to set each small black piece of coal in the face, aka tiny black beads.  I put a good dab of E6000 in each hole and set the beads and the nose piece. I glittered the face at this point to make sure the glue got covered. Voila, sticks to the excess and I don’t have to go back and glue paint the details of the face. Smart me.

Finished face before glittering with my pointy tool and glue tube.

I let the eyes and mouth set for about ten minutes before I went back with white glue and a small paintbrush to coat each head thoroughly before dipping it in my glitter box and sprinkling glitter all over.

Glitterbox

To keep my studio from looking like I just murdered Tinker Belle, I keep the glitter I am working with in a wooden cigar box, I use a piece of sandpaper for a scoop and pour it over the piece. When I’m done it makes it easier to collect and save the unsued glitter and it keeps it from spreading everywhere like fairy dust.

drying time again.

I leave the heads on their skewers to make it easy to work with them until I set them in place on the bottles. While they dried I cut out scarves.

felted sweater bits, handy to have around.

Old wool sweaters that are felted and shrunk are wonderful things for a lot of reasons, they cut just like material and don’t fray like woolly is wont to do.

teeny little scarf, cut and measured.

These tidbits from last year lent themselves nicely to become tiny snowman scarves. I wrestled with them and tied them down first, then lifted and dabbed glue on to hold them in place.

Next task was to set the heads on with E6000, I resprinkled the heads and necks with glitter to disguise any excess glue, being careful not to tip the bottle and lose the head.

Ready for my hat!

The most fun of all is selecting which salt shaker lid works best for a hat, who knew these little doodads would make such charming helmets? I even put rhinestones on one snowman in place of a scarf, making it a snowgirl with a lot bling.

 

Snowpack

Snow couple finished and ready for Christmas.

These are a complicated project and there are a lot of specialty bits required, that being said, if you wanted to tackle something like this everything you need is easily available and not expensive. What are you going to make this Christmas?