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.

TBI:Lost in November

Terry Chapter 6 and 7 Beginning of November

Or Chapter 30 and 40–who knows at this point…. At any rate, I believe I left off at a point where I was just about to explode at the lack of aid and assistance available to brain injured people and their families. These are not regular mental cases. These are physical insults to the brain which leave a wide track of devastation through the brain and the family of the brain. For some peculiar reason the medical community and the mental health community in Washington are unable to figure out how to help brain injured folks beyond in home visits of therapists. The only other alternative seems to be a warehouse–nursing home, Alzheimer’s unit etc. All facilities designed for people that are not expected to recover or be supported in getting better or returning to something approaching normal.

I think the problem lies in the political process that funds care for  TBI people. If you can’t see the injury and buy a band aid or get an operation are you really injured? It doesn’t help both the caregiver and medical communities to deal with such untracked and unchartable territory as the brain either. Remember that old ad, “A brain is a terrible thing to waste?”  Yes, it’s a waste but very few people know how to rescue one.

The shower is almost but not quite finished. We finally had a bath thanks to friends, Gary and his wife Judy, who invited us over to take a shower at their house and treated us like visiting royalty instead of the showerless grubbies we really were. I thought we would never be able to pry Torin out of the tub. Our shower tiling was finally DONE last night at 3:30 a.m. and the shower project from hell is now waiting for the wonderful guys from the city of Lacey to come over and help me hook up the parts that water comes out of. I may get a shower tonight after two weeks and two borrowed showers. I am sick of cat baths in the sink and so are Terry and Torin.

The shower really did turn out nicely but I will never tile anything that big again in my life and do it artistically with mosaic set into it. What was I thinking???? Obviously I wasn’t…but it’s done and if water will come out of it and my shower curtain rod gets put back up I will sit in there until the water heater runs out of hot water. I will probably have to fight off my dear friend Sherry though–she has been staying with me to care for Terry and in the thick of the grouting goo for three days. It’s been frustrating for us both because with Terry watching you have to do what you can when you can. Of course it didn’t help when I didn’t buy enough grout and when I got more I got the wrong color, meaning planning another trip to the store with Terry in tow.

And about our week after the last missive I sent to all–let me just say things got much worse before they got better. This part of the story appears to have a happy middle of the end of the end of the middle. We are by no means at the end of the story. Tuesday (I think?) we had an appointment with Dr P., Terry’s regular general practitioner I wanted his shoulder looked at and his medication looked at and adjusted because he is still not sleeping well from 2-4 a.m., which is about the time I finally make it to bed so I am really tired because I’m back up rubbing his back, his feet, following him around etc.

This bizarre late night wandering and restlessness is not uncommon in brain trauma but it does lead to things like unwatched people drinking the liquid hand soap in the night. After the Tuesday night wandering episode Terry was spitting and cussing and saying the water in the bathroom was terrible, it tasted awful and I assumed he was having another one of those issues with reality not being quite there for him. He came back to bed and was still making the kind of noises anyone would make after ingesting 1/4 cup of soap. We finally got up and I got him a nice fresh glass of water and figured out the soap sipping incident. I helped him rinse his mouth out again and we finally settled down. He did not require a laxative the following day.

I digress, back to Dr. P; we arrived in his office for our appointment in the afternoon and sat around in the waiting room with me falling asleep sitting up until they put us in a room. This room had no windows and it was the size of a large closet. We were left there–for one hour and 15 minutes. I sat on the first of a series of hard plastic chairs that began to appear in my life.  TBI patients are restless anyway and Terry was crawling up the walls after 15 minutes, his back and shoulder were hurting and no doctor in sight. Finally, about the time I was ready to leave and leaking smoke from my ears he blew into the room. Seems he had heard the story from Terry’s and his mutual good friend Rod.  I just filled in some details, explained we needed help to find somewhere that could help Terry and give him a quieter environment. I said we were looking at adult care facilities and he said Terry should be in his facility. He is the medical director at a rehab center here in town. I told him we had applied there and after two days of dithering we were turned down and I was very disappointed. He said, “No problem,” and dashed out to make a phone call, came back and told me Terry will be admitted tomorrow. He was really impressed at Terry’s remarkable progress in just five weeks and actually said in two months they’d get him back to where he was before.  I remarked on how refreshing that was to hear and how grateful we were for his help. I asked if we needed to look at his meds or his shoulder and the doctor told me not to bother, he’d do a complete evaluation the next day. I was walking on air when I left.   Sherry was waiting for us in the car   and I told her what had transpired. She is a retired social worker and she’s been doing legwork to help us find a place for Terry. We were both relieved and happy as we headed home.

The call never came. Around 2 p.m. the next day I called the facility and was handed around until I got passed to a guy named Dan who told me he and Dr P. had decided Terry was not appropriate for their facility. I was devastated and MAD. These people had not had the courtesy to even tell me he was not going to be admitted. I did not get any medical care for Terry and I’ll bet they think they are going to charge me for this mess—I think what this doctor said and did was unforgiveable. Not malpractice perhaps, but arrogant cruelty certainly. Back to square one with poor old Terry. And no looking at his shoulder or his medication either—I called the doctor’s office and was left on hold for ten minutes before I gave up.

We spent the entire next day calling and talking and hunting for a facility or home that would be good for him for a month or two of quiet rest away from the bustle and stress of a family. Terry cannot handle noise or stress or too many people or any kind of over-stimulation. We have a dog, a teenager and two cats. Time keeps moving forward for all of us and I don’t know how to stop the world and make our situation work for Terry.  I am trying to buy time. I am told again and again that it is time that is needed, time for him to recover, rest and recuperate. I still think he desperately needs his therapy too, and I want to find someplace that is not a warehouse for the wounded.

No one is prepared for brain trauma walkers who might just stroll away. One place in Centralia would take him and it sounded good so we visited it that evening. It was a cousin to the HP Lovecraft Motel –only this had to be the Barbara Cartland Nursing Home. For those not in the know, Barbara Cartland was an ancient lady who wrote romance novels that introduced the genre to America.  This place was really clean, smelled great and just about killed my fashionista son on impact. The walls were painted a mélange of colors including mustard yellow, and an indescribable green that is close to the color of copper ore–turquoise but not really, just overpowering next to the yellow. The dining area and television lounge area were pureed flamingo pink and the halls were a paler shade of the same. Every surface had heartwarming Victorian trinkets on it, flowers, feathers, more silk flowers and sappy statuary, really bad art and wallpaper borders completed the picture.

I know the little old ladies wheeling around hunched over in their chairs probably loved it and it made them feel very comfortable, but it felt like I had been locked in my grandma’s bedroom in 1976 and never let out. I was reading their calendar posted in the hall while we waited for the owner to give us a “tour” and I thought it was probably the wrong place when I saw the calendar set aside time everyday for “group reminiscing”.  Can you picture Terry in the midst of 17 frail little old ladies and a sprinkling of even older gentlemen talking about the old days? They also have kickball as an activity….quoi? I figured it had to be a sturdy game of wheelchair football and was trying to imagine picking the teams.

Terry is a wanderer at night and I didn’t think the tiny toothless female aide (not aged—toothless more like descendant from a Virginia mountain woman) could handle him when he strolled into Mavis Fenster’s room at 2:00 a.m. trying to find the bathroom and peed in her clothes hamper. He is getting better but still has issues with relocating himself in space and time and he’s usually pretty bare when he sleeps. The whole situation was a heart attack waiting to happen so we excused ourselves and went home.

Terry had gone with us because we wanted to gauge his reaction to the place. He made us talk in the car about being out of our “safe zone” before we went in to examine the place. Although that made no sense, in translation it meant he was not happy to be there.

We got home and started to go into the house when Terry kissed me good bye and asked me to give him the keys to the car because he had to go home. I tried to explain he was home but he was adamant about going home. We stood on the deck and talked and he said he “Lived in Tacoma with his ex wife” and to stop playing around. Of course he thought ten minutes later he lived in Seattle with some firefighters and the address was two blocks over, but he couldn’t remember the street name. While he was distracted Sherry and Torin scooted around and padlocked the front and back gates, which we had had the foresight to prepare for just such an event. He was mighty upset that he couldn’t get out of the yard and walk home to Lake Louise. He tried to leave by both gates. He started to climb over the front gate with a cast on his arm and that’s when I called the police. I finally coaxed him back inside because he said he was cold. I asked him whose clothes were in the closet and he said his but he had just brought them over. He lay on the bed and refused to speak to me because I was holding him hostage. That’s about when Officer Cook showed up. What a great guy. He talked to Terry and they discussed mutual acquaintances in the fire department and Terry said he would go with Officer Cook to the hospital so he could sleep. They left in the officer’s car; I burst into tears and had half a beer.

Of course that’s when the phone rang and it was Officer Cook. I was being called to the hospital. I suppose as a sort of translator? Again the curtained cubicle, Terry left abandoned for the most part. The ER doc was short, (literally) sharp and to the point and he was gone from our cubicle within a few minutes. They did a CT scan and Terry’s head appeared to be medically normal. After he escaped in his little gown and scooted down the hall with his buttocks twinkling, a nurse caught him and brought him back. He was dosed with Percocet and Attavan and left pacing the cubicle and in a sweat rocking and moaning. Personally? I think he was in the middle of a huge panic attack. Percocet is not what a TBI needs and he was very distressed for more than two hours.

At 12:30 a.m. a nurse came and escorted us down the hall to the psych ward. That was fun. I spent the night in the psych unit. I always wondered what that was like and now I know. They put Terry and me in a room with two overhead lights and a window-like portal in the wall. The furniture was a wooden box with places for restraints on the side. That was the bed and the mattress was about as thick and comfortable as a sweat sock. Terry referred to the one thin blanket as a tablecloth. I left him for a few minutes to do the intake paperwork and I had some vague hopes that mental health workers might be able to us find a place for him as I had been trying to get capable help for nine days with no luck.

After filling out a batch of paperwork, I was escorted back to the unit, noticing no doorknob on the inside, and given a hard plastic pink chair to sleep in. Terry was both miserable and wound up. He couldn’t sleep it was too bright. I gave him my sunglasses no one had taken away my purse. Then he couldn’t sleep because his back hurt and he had a headache. I discovered that a really strong peppermint Chap Stick makes great emergency back liniment for a rubdown. Afterwards you can wave your hands under the person’s nose for their headache, dispensing peppermint fumes (MacGyver eat your heart out).

We settled back until 3:30 a.m. when the psych worker came to get me and tell me I could leave. The weird thing about the whole experience is how depressingly ordinary it was. I have a kink in my back roughly the size of Cleveland from the plastic chairs and tiling all hours of the last few nights. Terry was sound asleep when I left him in the loony bin.

I got home at 4 a.m. and up at 6 a.m. to get Torin to his morning club meeting at school. I drove home and picked up the phone. Penny, Terry’s sister had given me the name and number of one of her college faculty who specializes in helping TBIs and he was willing to talk to me. I called him and he set up a meeting–in Grapeview–90 minutes later. I rousted Sherry out, gave her a cup of coffee and we headed to Grapeview to meet Dr. Joseph Moisan.

He is now my official hero. He is a private case manager with credentials and a pedigree which is also the size of Cleveland, the suburbs and the surrounding county. His son was a TBI when he was only two and a half years old. Dr. Moisan says his son taught him everything he knows–and now he puts that to good use helping others. We were in his office for almost 8 hours and his wife Judy made us mercy tuna fish sandwiches in the middle of all of it. He cut through more paperwork and crap in that one day than I have been able to do in all the days since the accident.

We are now on the event horizon for a social security disability hearing next week. We got the approval for a neuropsychological consultation which is necessary to let the doctors know where in Terry’s brain the injury took place, possibly how severe it was and how he is recovering and can recover. Again–the brain is a marvelous thing and we are all dancing in the dark here. Well, the neuropsych guy is dancing in a candle lit room but it’s still not 100% clear when you are dealing with a brain. Dr. Moisan knows all the facilities in the country and he has found the best one closest to us in Bakersfield, CA. This place holds promise for bringing Terry back and I am holding on to the belief that Dr M. can help make this happen for us. I watched him go through insurance companies’ hurdles like an Olympian athlete. It was a $1000 to retain the doctor’s services but worth it at twice the price because he knows his stuff and their stuff and how to make them all do the other stuff.

Sherry is going home to Oklahoma next week; I think we wore her out. My brother is flying in Friday night to be my new overnight helper for two more weeks and I think if we are not seeing daylight yet we may at least be seeing the nightlight enough to read the clock.

I’m off to fetch Terry home from his vacation in the psych unit, more later.

Terrible T.-the Unlaundered Version

Oct. 21st, 2006 |

The email update list who wants to know how Terry is doing gets the sanitized version; my journal gets the director’s cut–the down and dirty ugly parts of brain injury. Frontal lobe injuries ruin the ability to control impulse, organize, make any kind of judgment or decision and they release all the anger usually kept under control.

T. cannot behave appropriately–as in identify the toilet, not eat a whole sausage patty in one bite–or not reach into a pot of boiling water to get at the rice in the pot. He has to be watched every second and he hates it on some level. I’m exhausted and scared and just stunned by the consequences of his decision to ride his bike at night.

No one could have predicted it, but I seem to be the one paying the piper and I am starting to wear out and be really angry at the world of insurance and the medical community. I’m also angry with T. and frustrated because he cannot understand any of this so I stuff it down and don’t take it out on him.

They scrape someone off the street, save their lives and dump them back into the world whether they are ready or not. With traumatic brain injury, TBI, as the cognoscenti call it, they are seldom ready. The TBI world is populated by an infinite variety of symptoms, causes and effects. Each person is different in their reaction to treatment, medication, and general recovery rate and degree of recovery. No one has any answers and they gently skirt the truth–which is:
a)we don’t have a freaking clue
b)frontal lobe injuries are the worst with the longest and lowest recovery

There is nothing in place to support the people stuck with trying to cope with what amounts to a giant brain injured two year old. Everyone has an opinion but I don’t see anyone here at 2:00 a.m. when I’m trying to talk him in off a ledge and getting nowhere. Fortunately, we have no ledges in reality; but last night he did go outside in the rain barefoot and mostly naked. The yard is fenced and we put locks on the gates or the cops would be here by now.

Although I am the only caregiver–another word I have come to hate–I still have to work to keep a roof over our heads and be able to pay the bills. How can I do this when I watch him all day and all night? Even if I had day help, he doesn’t rest at night so when am I supposed to rest? I am just beat today,napping on tenterhooks and able to flame to full consciousness in a split second when he sits up and gets ready to move. I try to just follow him and not intercede unless he’s doing something dangerous that could result in harm.

I really don’t think he will ever return to work. I am hoping that his care will be paid for and that he can stay home. When he does well he does really well, just not for very long. What is happening now is what I was scared of all along. He does not remember any one from the last two months– nor does he even know what town he is in most of the time. His health is improving and we are going to the doctor next week to ask about his meds and show the doctor I do need help. I will ask the doctor how on earth we can change any of this behavior.

The therapists finally all showed up Friday after I had a fit because they hadn’t even called. They seem to have some ideas and are going to work with him. This will be good I think. I keep expecting the magic bullet. The thing that makes it click. I want to see him realize with horror that he crashed his bike. Not just take it in and keep going, like I told him we were having pizza for dinner. That will probably never happen.

I got hold of the disability board yesterday and asked them what they needed to give me what I need. I have to present all this stuff as medically necessary and come up with costs etc,. to present to them–and watch Terry at the same time. SSN has to to get filed for, but that’s an exercise in stupidity as he doesn’t have social security because he was a fire fighter and didn’t pay into it. I really cannot afford to hire a caregiver right now–especially one that I have to come in and intercede for every ten minutes. Heather is willing but she cannot handle him in any way. he doesn’t listen or respond to her so I cannot use her help. I may wind up having to hire a big strong guy to hang out with him and figure out how to share nights.

I want to explore adult homes for him, might be the best option at present. I need to document the true weirdnesses but right this minute I think I’m too tired…..

 

TBI Six Years Later, Sharing the Story

On September 12th, we will mark the sixth anniversary of my husband Terry’s life changing accident and our fall down the rabbit hole that is traumatic brain injury. Somewhere in the past year, I got so busy just living life I didn’t finish transposing all of my journals about our journey through that time. Its time, I need to close that circle.

http://coreysnow.wordpress.com/2012/09/03/like-tears-in-rain/    Now my oldest son Corey is dealing with TBI, the result of his wife having had a stroke a few years back. It has finally been diagnosed after years of frustration, but it came with its own overwhelming set of problems. It reminded me  again of how hard and harrowing that journey back is for caregivers. I need to pick up my “pen” and write what I know, what I learned. If I can light a candle for one single person to see their way a little further down that dark tunnel, its worth it.

Here is the next chronological entry from my journal six years ago. The earlier posts will be found listed in the Category tab to the right under down the Rabbit Hole, or above under Living with TBI.

More Horrible life of the TBI

Oct. 22nd, 2006 | 12:09 am

This is a long, long rant. Feel free not to read it–but I have been in my house for seven days now with one short visit out to the grocery store and another one out to pay bills while someone else kept an eye on Terry and I need to talk!

I am devastated by what the future looks like for brain injured people and their families. There is no help for them in Washington to speak of. We have been home a week tomorrow and it has been a hard week–I am going to continue sending these updates out occasionally because no one on the planet–at least the part of the planet called Washington, has a clue as to how to help anyone with a brain injury and the more people know the more we can begin to demand a change to the situation.

The insurance companies don’t appear too useful once the acute care phase is over. Doctors are the same way. In no way is Terry ready to be at home except perhaps physically. If he had only had physical injuries it would have been fine but with the mental injuries he needs 24 hour care. Not necessarily an RN with pills and needles–but guess what? For the most part insurance only covers “intermittent” in home care delivered by an RN not the necessary 24/7 minding.

I am so angry I can hardly speak most of the time. The hurdles I have jumped this week and the hoops still ahead make me want to just sit down and cry. I have been unable to return to work and unable to do anything but make sure Terry doesn’t hurt himself. He has a severe disconnect between reality and Terry. Yesterday he found his earplugs and sat down to put them on–his feet. That was funny…. today he got dressed by putting his tee shirt on his legs and yesterday he decided to shave with his electric razor. We caught him just before he dipped it in the water. He almost knows what he used to know and as a consequence is seriously dangerous in his application of what he thinks he is doing to what he is really facing.

So why do I need this constant care for him which I am not getting? Terry does not respond particularly well to me, his son Shayne or Shayne’s wife, Heather. We are not peers and he sees no reason to follow our wishes, orders or demands. I can ask but he doesn’t necessarily comply–even if I’m trying to get him to see he is about to urinate all over his chair.

He has no sense of time, no sense of direction and cannot find doorways well. He doesn’t know what things are or what they are for quite often. I am sitting here on the couch and just heard the bed rustle and creak–automatic stomach ache—is he getting up? Will he be able to find the bathroom this time? What will he do? In the middle of the night more often than not he is unable to recognize the bathroom and has urinated on the toilet, under the sink, on the rug outside the closet and in the yard when he cannot be stopped from going outside in the dark and rain completely naked. Luckily our yard is fenced but Thursday he claimed he was putting his shoes on and insisted on going out the front gate barefooted and walking on sharp gravel to the neighbor’s recycle bin on the street which he proceeded to open and peer in—looking for his shoes. I finally convinced him to come back into the house and succeeded in helping him with his shoes.

In the night when he gets up he is like a man possessed and Terry is not in there, he is a sundowner. Its someone else who is sarcastic and angry, refuses to speak to me and more than once has offered to move me if I  don’t move. This happened last night when he got up and decided to go outside at 1:30 a.m. I had to follow him out of bed when he said it was time to get up. I told him it was the middle of the night but he did not believe me and said I was a trouble maker. He grabbed a blanket and succeeded in pulling it over his head–instead of wrapping it around himself. He had no shirt or shoes at this time but at least had on pajama bottoms. He headed for the door and I stood in front of it and told him he was not going out. He told me to move or he’d move me–I said no and blocked the door with my body. He told me again to move and tried to grab me and move me. I wasn’t budging and he gave up and turned around and went out the back door before I could catch him. He wandered down the sidewalk and back into the house where he sat on the couch and tried to sleep. I asked him if he knew where he was and he said it didn’t matter because I would just lie about it anyway. It was 1981 and he was at Ft Lewis according to him. It is the strangest feeling in the world, so surreal to be facing things like this in the middle of the night. I always check to make sure the knives are put away and my cell phone is in sight in case I need it. So far no real tragedy has occurred except to my nerves. These incidents shake me badly and I am losing ground with my feeling that I can control the situation.

Today he was sleepy and sweet and very nice and almost like Terry, but he still isn’t Terry and never will be the same. With luck he will become someone who can come back into the world and be a new and different version of himself, but that takes time and rehab and healing. No one knows how much time it might take, no one can even guess. It’s very odd to be talking to him and just watch the lights go out in those blue eyes. You can see him lose his focus and then he either falls asleep right there or starts talking garbled nonsense that sounds fairly normal–today he was playing baseball all day according to what he told Don Bowman. You cannot distract him or tell him what is really going on. He is unable to take it in– but then he’ll come out of nowhere with a bit of something that stuck in his synapses. We went for a slow walk today because the sun was out and it was so beautiful. I asked if he wanted to go to the garage and see his motorcycle. He said, “No, it’s just a busted up Fatboy.” This is the first time he has realized he has a Harley. He still cannot comprehend the accident and all the retellings in the world have not really sunk in at all. He literally does not understand why he hurts so much and what happened. He retains new information about 5 minutes to 1 hour depending on some set of circumstances I don’t understand.

I’m desperate to find help. I have to go to work because Terry cannot and all I can do is watch him all day long. I get nothing accomplished and my shower is still not done. I have to find ten minute increments when a friend is there to keep an eye on Terry. I have been without a shower for two weeks now and I’m getting fairly tired of cat baths in the sink. I’m on the last wall and hoping I can steal enough bits when Terry is asleep to finish it so I can grout it.

The problem with finding the help we need through Terry’s three insurance companies is the way the statute is written which is not for custodial care. I need someone to help keep Terry safe and to exercise his mind as much as possible. I can’t do it all. And I need more than just day help too. What am I supposed to do with a 14 year old who needs me too? According to the home health care nurse who irritated me beyond belief–an inept man who managed to screw up two or three veins in Terry’s arm–Terry is not allowed to leave the house and still qualify for this in home care. This in effect makes us all prisoners as I certainly cannot leave him home alone–even if it were allowed. I have been out of my house one time this week when a friend came over long enough for me to go get groceries and another time to pay bills. Torin was stuck and needed a ride and I couldn’t even get him because Terry cannot be trusted to ride in a car yet. (As in tired of the ride and jumping out). I had to ask a friend to rescue Torin for me. This is what insurance companies and the medical community don’t get. They are destroying a family. If I cannot work we lose everything we have and with Terry not able to work I have no choice as I have to make up our losses by myself–I don’t think I can make two peoples’ salaries all day and watch an unpredictable brain damaged wanderer all night.

He has a cast on his right hand which he constantly tries to pick and peel off. He claims hourly he doesn’t understand why he has a cast. This afternoon it was because the dog bit him, an hour before that he said he hurt it falling off his bicycle. He doesn’t connect with reality very well. He just came out of the bedroom in his underwear, he has had his medications and should be asleep–instead he is demanding the radio be turned off–nothing is on but the dryer. He is trying to turn lights out although I tell him I am still awake working. He finally gives up on the light when he burns his fingers on the bulb. Then he goes outside and down the steps–I run after him and stop him from going through the gate. He tells me he has to get the garbage out. I tell him its Saturday night and the garbage is out back. He pulls on the gate and leans into my face and says let go. I wonder if this is the time he is going to hit me? I refuse to let go of the gate and look at his eyes, half opened and completely unfocused. I tell him again to look where he is and suddenly he gives up goes back into the house and climbs into bed shivering. I follow to tuck him in and say I love you, but I wonder as I leave the room how long can this go on?

I am hoping we can find an adult home for him for a few months where the rehab staff can go to work with him and Torin and I can go see him too. The hope is as his brain heals he will be more able to understand what is going on, but for now the system has let us all down and I feel like I’m stuck in quicksand up to my eyes. I have made calls, and calls and calls and tried to figure out this labyrinth. Friday, I think I may have made some headway but that’s what I thought Wednesday and Thursday too. The LEOFF1 Disability board has to be supplied with letters from the doctor, treatment plans and costs so they can decide if saving our lives is feasible. They say they are very concerned about us but I am feeling they are far more concerned about saving their money.
Please understand I love him very much, but I want to help him get better. I want Terry back and my watching him decay is not getting it done. The therapists all finally showed up Friday and perhaps they can help. One in particular seems to grasp what is happening and I am hoping on Monday she can furnish more information so I can get it to the disability and then pray more, again, still….

heading home in the snowhed

Heroes

http://fromcheaptherapy.wordpress.com/2011/11/15/heroes/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+LisasCheapTherapyBlog+%28Lisa%27s+Cheap+Therapy+Blog%29

This very lonnnggg link leads to my blog friend’s Lisa great blog.  This week in her ‘experimental year’ of blog entries, she talked about heroes. I love her blog because she invites us in and she invites us to share. She makes me think and I like that. I like electronic conversations, I’m sure no one knows that about me…right. I never shut up in person or on paper and this has turned into the Great American Novel. Good thing I’m married to a good listener.

Terry at Glacier, one of our marvelous motorcyle trips. This is the Terry I married

My good listener husband is my own hero. We have been through so much together in our almost ten years. The plan we had for our lives when we got married didn’t work out in the end. It all changed when he clobbered a buck doing sixty uphill at night in Montana on his motorcyle.

The last picture in Terry's camera before the accident. He and his riding buddy Don, another one of my heroes, clowning around

Like Gabby Giffords, Terry suffered a severe traumatic brain injury, TBI in the common parlance these days. We watched the Diane Sawyer hosted show with Gabby and her husband Mark a few nights ago. It was hard for Terry to watch, it made us both cry. It brought back so many tough memories. Terry remembers very little of the early days after his accident but I kept a journal down the whole road back, for which I am eternally grateful because memory can change when you revisit it.

Finally conscious, he knows me, but that's about all. Trach tube out, IV tubes out.

It does get better. Torin took this picture of us all three years after. Son Corey in the middle and son Joel on the right at the annual Christmas Toy Run for Charity.

My friend Faye is a hero to me. She dropped everything and jumped in the car and drove to Montana with me to be with Terry for those first terrible days in the ICU in Billings when we didn’t know if he would live or be conscious again. My son Corey is a hero too. He rode his motorcyle out to Montana in October, just beating the snow, to be with me after Faye had to leave. He also stepped in when I needed him desperately to care for my son Torin who was only 14 at the time. I was in Bakersfield and Torin was alone because of an issue with Terry’s family. Corey gave up two weeks with his own kids to take care of his little brother and our house.

Torin is my hero too. He stepped up and tried to become a man at the age of 14, taking on cooking and cleaning and helping mind Terry and keeping me in one piece. He understood there was no time or energy for him. The accident ended his childhood forever.

The intensive care unit nurses and doctors in the hospital in Billings, Montana are my heroes. How do they do that day after day? The ICU is not a place that has good outcomes in many, many cases. They see people in life threatening and life ending situations and they get up every day and go to work with positive attitudes.

Coming home. The air nurses who flew us home were the same ones who picked up Terry after the accident to Life Flight him to Billings. They didn't think he would make it. You can see the pressure drainage holes on his head and where they lifted his skull off, we call it his divot.

I still want to write a book about what its like for families facing the aftermath of TBI and I’m working on it, in between all the other things I juggle on a daily basis. Don’t get me wrong, I was born to juggle, and it will get finished because the story is important to tell if it will help others  in the same leaky boat with their injured loved one.

We had in home therapy but it wasn't nearly enough.

Why is Terry my hero? Because he fought so hard to get back to us. When he was hurt he lost his short term memory and his ability to do things like count money or write his name or know when a pot of water was boiling. He was an athlete whose balance was gone and now he had to learn to walk again, he fell down a lot.

At home with us, he truly thought the laundry hamper was the toilet and he drank soap and put on my clothes thinking they were his. He broke his arm and his neck and all his ribs and punctured both lungs in the crash, physically and mentally he was a wreck.When he came home from the local hospital rehab center, he was physically on the mend but he thought we were keeping him prisoner, the mental issues were just getting into full swing.

Terry waves to me on the way to Bakersfield. One hour after this, he had a complete meltdown and lost track of reality again.

Another one of my heroes is Dr Joe Moisan, Terry’s ombudsman. We found Dr Joe by a miracle and he cut through red tape like he owned Arthur’s sword. Dr Joe was diagnosed with a blood disease and retired before Terry got a chance to meet him and know him, which makes me really sad. Because of Dr Joe, Terry got  a chance to get better. He was accepted into the Centre for Neuroskills in Bakersfield although he was a little past their upper limit in age.

The staff at the Centre are my heroes. They deal with with TBI patients 24-7-365 with both a residential and treatment focus.   Some patients will get better, some will live there forever. TBI is a terrible thing and its effects are wide ranging and the severity is different in every case. The only potential cure is hours and hours of one-on-one therapy and no one knows how far any one person can get. Their goal is to return the patients to independent living which means learning to shower, get dressed, cook food, all the things we take for granted have to be relearned in many cases.

TBI results in some pretty strange crazy. Terry was in many  ways a really big three year old, no ability to judge, no ability to make decisions or even actually see what was real and what wasn’t.  The people who work with TBI patients have infinite patience and watch over these people like guardian angels every second of every day.

Terry went to Bakersfield in November and got into intensive therapy. He didn’t know where he was at first and he kept trying to unscrew the window screens and escape. He thought Bakersfield was Olympia and he was trying to get home to Bellingham. Terry has never lived in Bellingham.

He had a breakthrough in December that he remembers, he called me on his little green Migo phone (for small kids only dials a few numbers) to tell me he couldn’t understand how he thought he was in Olympia because it was obviously Bakersfield out there and the doctors were there to help him because he was hurt.

I took this on Terry's first furlough after three months at the Centre for Neuroskills. Terry was back.

From that breakthrough Terry took off like a rocket. No one has ever worked harder to get better. The doctors told me in our weekly call that he was the most focused and dedicated patient they had ever seen. I remember being afraid to visit him. Would he still be that sad-eyed blank-faced person I had delivered to the Centre?  When I rang his doorbell for that first visit to his apartment at the Center in January, Terry answered the door. It was Terry, I could see it in his eyes, he was back. His strange roommates and their minders were so happy for him, that’s a moment I won’t ever forget to be grateful for.

Terry and John Neff the day before we headed to Bakersfield. We lost John to canceer a few months ago. I will be eternally grateful for everything he did for me. He was Terry's boss.

Here at home, John Neff and John Hartung and Darell A. are heroes too. They didn’t have to, but they stepped in and made sure we were going to be okay. John Neff, who passed on recently, marshalled the staff from the City of Lacey to make improvements to our house so Terry could come home from the hospital. John Hartung and Darrell spearheaded a fundraising drive which helped offset the travel costs of going back and forth to Montana and to Bakersfield. I owe so many people so many thanks I could write a blog and just list names.

Terry came home from Bakersfield in April. He was different. I have said its been like being married to his twin. A little odd sometimes but he’s still Terry. We had a huge party and invited everyone who had lent a hand, we were so happy to have Terry able to hug everybody and give them his own thanks. Best party ever.

He returned to his job as Fire Inspector, thanks to John Neff who believed in him every step of the way. It was hard for him, people look at TBI people like they might go bat flap crazy any minute, or drool, or forget, fill in your preferred symptom. He knew lots of people were waiting for him to screw up and prove he couldn’t do it. He didn’t fail. He went to work every day and he felt like a leper a lot of the time but he did it. Five years later he’s still doing it. Life has gotten easier but it still has challenges. He can’t retire yet because of the financial burden of the accident, ancillary costs of my losing my job to care for him and the things you never plan for and think about. He’s tired, but he still gets up and gets it done every single day.

Terry and Meesh walk together every day

He can’t run anymore which breaks his heart, but he walks every day, sometimes twice a day. His beloved dog Meesh would not be happy without his walkies. Terry gets foggy and forgetful when he is really tired and we adjust for that now. He has lost the ability to feel emotional highs and lows in a lot of cases which has been hard for both of us. Our lives have changed, and he was depressed enough to go into therapy. He wanted old Terry back. His doctor told him old Terry was gone forever and he needed to face that and get to know new Terry.

My hero, this summer on a top down day in the Mini

He has done that. Every day is hard when you are someone you didn’t used to be.  For 60 years he was exactly who he wanted to be and now he faces a different man in the mirror every morning. Because he fought like a tiger to come back to us, and because he proved everyone who said he couldn’t do it wrong, and because he never gives up no matter what, he is my hero.

 

 

 

Re-entry, The Goldfish Has Landed. Terry Comes Home From TBI Rehab

October 16th, 2005 TBI and how we survived it. I kept a journal when Terry got hurt, these are entries from that journal and those times. I hope they can help someone else struggling down the same lonely road.

We brought Terry home from the rehab center yesterday. Its only been 32 days since the Deer Incident. It is amazing how far he’s come and daunting how far he still has to go. Thank you Darrell Allston for being such a friend and helping drag all the contents of Terry’s room at the rehab center room home–how did we acquire that much crap in such a short time?

It wasn’t all things we set out to collect, but we figured we are being charged for all this stuff so we now have 3 pink water pitchers, a jumbo sized roll of saran wrap, enough ace bandages for a mummy, a whole box of rubber gloves, assorted band aids, ointments, powders, and a tiny pink dish pan. My favorite: they actually have industrially labeled hospital bath powder in hotel sized containers. So help me, it is called, “Fordustin”, I
mean is that not original? I have to dig out the shampoo and see what it’s called, “Forhairin” maybe? or maybe “Forhairinwashin” ? The Deodorant should be, “Forstinkin” or “Forpittiin” or maybe”Fornosmellin”. It all reminds of the pseudo German jokes that made the rounds 20 or 30 years ago featuring Little Red Riding Hood and a bad
accent.  If you remember those you are showing your age–or mine.

Terry sits in his chair, like a cranky spider and watches teevee. But when he wants to go to bed he wants our world to stop, doesn't matter if its only 6 p.m., part of TBI

And other friends too, Brian Kessler–we have your foam mattress –thanks, it
saved us all from sleeping on the hospital cot with a mattress which felt like
a sack of empty pop cans. Terry did complain about being bounced around in the car on the ride home so I know he hurts but we made it and he loved the renovations. He
has viewed them several times–and each time they are new. He thinks he’s in a hotel
and wonders how we can afford it.

I had ten prescriptions to fill on a Sunday, that was fun–and to keep them straight I made up a little chart so I could tell when to give him what. He’s alive and doing better so I really don’t want to kill him by giving him the wrong meds after all this.

He slept most of last night, amazing after the weeks of restless wandering around
the rehab center corridors, its 11:30 in the morning and he’s had breakfast and
he’s back asleep. I hope the pattern continues with his sleeping at night
because we have discovered Mr. Davis has one hell of an independent streak that
could get him in trouble while the rest of us sleep the sleep of the exhausted
after hours of watching over him. His short term memory is impaired and the first
thing that goes with that is impulse control and the ability to weigh things
that might be dangerous–and not do them, like going for a midnight walk naked
in the middle of winter.

The most excitement we had yesterday was Torin yelling from the kitchen for
help. He was cooking dinner and had rice boiling away in the rice cooker when
Terry showed up fresh from a rest in his chair in the living room. He got a spoon and wanted to taste. Visions of steam burns etc., ran through my head as I sprinted from the bathroom with my plaster covered paws from the shower renovation.

Terry was downright cranky and nasty to Torin who was almost in tears trying to stop him from hurting himself. Lesson 1: do not let him get hungry because impulse control
being gone he will wolf down anything in sight including hot raw rice.
Lesson 2: Try not to tell him no directly. This was borne out yesterday when he
decided he HAD to get outside. I grabbed his house shoes and sprinted after him with the ring of keys to the garage. He demanded the keys, I demanded he put his shoes on and he wasn’t having any of it–emergency averted when I reached around him and unlocked the garage. He put on his house shoes like there had been no discussion and went into the garage. The bike was there and he said it looked like it needed some work. He started folding stuff up and putting it away but got distracted and went wandering back out and into the house. His attention span is about 2 -5 minutes. This is discouraging but it is getting better by inches.

terry tests out the new shower. These pictures don't even look like Terry. Eerie, how a face can change with the mind of the person inside.

He has been far more peaceful at home although he still cannot tell me he is in Olympia–when I ask where we are I get between the kitchen and dining room–or something like. Last night he was tired and crabby and about half asleep from 5 pm on. He demanded we turn the teevee OFF and it was turned down very low. This was at 8:30 p.m.

I am tiling the shower and trying really hard to get it done but what a job–I’m sure the sound of breaking tile didn’t help much, but I told him I had to do it and that was that. It is hard to find the balance between his life and Torin and I having a quality of life that is acceptable. I am looking forward to the professionals assessing him this week so we can get some caregivers in while I have one nerve left intact. In home rehab starts tomorrow too and that should be helpful. I want to learn what they do so I can keep stimulating his brain.

We have pretty much isolated the source of 70% of his pain as his right shoulder. I don’t think it got much attention in the fray and is now surfacing as a source of agonizing muscle spasms. I’m guessing he’s torn some stuff in there and hopefully we can get his doctor to take a look at it this week.

Terry and Nellie. She has never been allowed up on the bed before. Very odd.

I am in the process of trying to figure out how all this fits together—a new wireless connection in the living room means I can work in here and listen for him in there. This is like living with Dr Jekyll and Mr. Hyde. There are two Terry’s in there–one I don’t know or recognize at all and the other I get flashes of–the old Terry.  I hope we can reintegrate him so old Terry can send new Terry to stand in the corner and stay there. It’s hard to remember that he is a giant two year old with all of a two year-olds curiosity and lack
of fear when you are having a perfectly lucid conversation with him—except that he won’t remember in five minutes in most cases.

I keep telling him things will get better but mostly I think I’m telling me. I’m sure they will too, but no one has a written a road map for this peculiar territory and it’s easy to get lost. I can tell things are different–the DOG is on the BED and he invited her up. Whoa….. Toto we are not in Kansas anymore because in Kansas the dog is not allowed on the bed so you’d better enjoy Oz before Terry finds his ruby slippers and clicks the heels together and you get booted back to the dog bed.

Pakistan and Renovations

Oct 4, 2006  If its Sunday, we must be in Pakistan

 Today at the rehab center, my sons and their wives all came to visit Terry and spend some time with us. We couldn’t help but laugh when someone asked him if he knew where he was, his answer was Pakistan. At this point if we didn’t laugh we would cry, so black humor is my friend.

I am trying to start a new job, end my old job, and be in the hospital and at home too. It’s not working so well to try to be in two places at once. The next couple of weeks are really critical to our future and I’m downright scared at this point.

 
 

Where the arrow is a gnarly tree was, wonderful volunteer chopped it down, chopped it up and took it away!

 

Terry can’t be left alone for a minute and there is not enough nursing staff to stay with him nonstop. I have drafted friends and family to help watch him. Thank God for friends, Darrell and Brien are lifesavers, they come in at night to sleep in a lumpy bed with one eye open to make sure he doesn’t wander or pee on his bed-again-or eat a pillow or escape, the list of things that could happen is endless and scary. Tor struggles on manfully at home, trying to take up the slack. My heart breaks to see him growing up so fast and hard, but I’m so proud of him and I couldn’t do this without him.

 
 

The guys put in this ramp for us because Terry can't do stairs. They moved the gate in and the fence over so I can park in back and get easy access through the gate. The gorgeous pavers were gifts too. Nellie likes.

 

 Terry has no real idea that what he sees, thinks and does is not reality. He can see a laundry hamper and be absolutely sure it’s the toilet. He understands he is hurt but he thinks that he is a prisoner. This is all so strange, but he continues to heal so I have hope that I’m hanging on to like someone going down on the Titanic.

 

We had to take out the tub and put in a regular shower that you don't have to step up to get in. I always wanted a window in the bathroom and Eureka! There was once a window behind the old fiberglass wall.

  
Terry is slated to come home the 15th and he can’t come home until the renovations for his new handicapped state are done. There is just so much to do to get the house ready for him. The generosity of the people Terry works with is overwhelming, the City of Lacey and the builders and contractors have reduced me to tears several times. How do I express how I feel for these people who have stepped up to help? They have taken it on themselves to do the renovations we need to keep him safe. I am just stunned and grateful and amazed. Thank you doesn’t even start to tell them what is in my heart and it feels so inadequate saying it again and again. All of this work is going on starting now and what I need most is help at the hospital watching Terry so I can be at the house doing the prep work.

 

The siding comes off and the window goes in. yay! New shower pan and waterproof board up, hardware installed and I'm ready to tile.

 
The therapists and doctor met with us today and basically Terry has to go back to the beginning and start over. No one knows yet how far he will get–he does a lot of things that are automatic and “old programming”, but remembering to chew his food and get another spoonful are problematic. He gets tired very quickly and you can see him tune out. He doesn’t have any sort of attention span and he is in a lot of pain from is back. The funny, wise Terry is still in there somewhere but it is like he is two people now and its very odd.

 After only 21 days he is doing phenomenally and I work to stay positive and focused and help him recover the miles he lost by heartbreaking inches.

Here is the way the shower looks now. It took me two nightmare weeks with my friend Sherry to tile the bloody thing, but it worked then and its wonderful now!

Welcome to the Aquarium

Journal entry October 1, 2006

Welcome to the aquarium:The eagle has landed, well…not exactly an eagle. At present more like a goldfish. Terry’s short term memory is shot. Like said goldfish he swims across the bowl turns around and it’s all new to him. He is now living only in the present. If he knew you before he knows you still. If he just met you, you will have to be reintroduced three minutes from now. Needless to say we are working very hard on helping him make those missing neural connections.

On the white board on the wall in his very nice room I have written out: ” I am in Olympia, I am in St Peter’s rehab center. I had an accident with my motorcycle in Montana. I hit a deer on 9/13/2006.” I remind him to read it every now and then. He can read, its halting, but he can do it most of the time.

This is all very odd and heartbreaking, he can carry on a perfectly lucid conversation, but if some piece is missing his mind supplies the missing piece out of some abstract memory which results in some unfortunately hilarious answers. I have every hope that the course in miracles will continue and he will begin to recapture those missing bits of his brain. I told him he now has the first valid reason ever not take out the garbage–he literally cannot remember.

Christmas should be easy too–I can give him the same present every three minutes and have a wonderful money saving holiday.  If I couldn’t laugh and see the humor I think I would cry like a baby and I really don’t want to do that– so please bear with me and don’t be appalled at my blackly humorous take on all this. I am not cold or unfeeling. I love this man and I’m like a bear with one cub these days, I need to remember how to smile and laugh and trust God and myself and all of you and Terry, it will be okay.

The folks at St Peter’s seem to be very nice, very dedicated and focused on rehab. I cannot leave him alone for a couple or reasons–number one, he pulls his C spine collar off. If I tell him his neck is broken he says he understands, looks me in the eye and yanks it off. This means all night long as I try to sleep in the chair next to his bed I listen for that velcro rip, jump up and explain it again, and again, hoping it will stick this time.

I am so looking forward to the help everyone has offered and I hope by Monday to have a central coordinator for “sessions” with Terry. I am finding I cannot do it all–right now I am caught up in just unpacking and getting myself reoriented to home after 16 days away–and still trying to be at the hospital half the time. Torin is trying to cope but I know he is shocked and scared and trying to grow up really fast.

I have stacks of mail to go through, thank heavens most of it garbage, but having to figure out the insurance, the paycheck, the bills, and Terry’s side of our life is all consuming.  I am deeply grateful to everyone who has stepped up and offered to help with Terry so I can actually get some stuff done.

Last night I was at the hospital with Torin and Terry and I got about three hours sleep. He slept soundly until midnight and then tossed and turned and kicked off the covers and got sideways in the bed and had to go to the bathroom and, and, and, until 3:30. I will warn you Terry sitting is not for the faint of heart. He is better at walking every day but still he is a little out of it as far as remembering to tell someone he has to go the bathroom. If you are not a strong person and you want to sit with him–make sure you know where the nurse’s call button is. I just sit him up and haul him off myself, I don’t even use the big white strap they gave me, that’s just too much like carrying a refrigerator around on my back. Having raised four boys, this is just sort of déjà vu on a big scale. Please feel free to scream over sharing–but this is the true story of TBI, traumatic brain injury. It’s not pretty, fluffy and romantic like in the movie 50 First Dates. It’s a grinding minute by minute process and remaining positive is the key. If this man can be yanked back into the world by just strength of will it’s a done deal.
Each night seems to be a bit easier as he gets his days and nights sorted out. Physically he is doing really well. It’s looking like he may have re-chipped an elbow that was already giving him trouble and his ribs and back keep him miserable no matter what position he’s in. He’s doing remarkably well and I have hopes that this is a trend that will continue. 

Keep those prayers revved up, we need all the help we can get!

Final Dispatch From the HP Lovecraft Memorial Motel, Billings, Montana

I’m still finding pieces of my journals, so from time to time the entries about Terry’s accident and the struggle back may get a little out of order. This one is too good not to share…

Sep. 27th, 2006 | 06:43 pm
location: room 258, the billings clinic
mood: amused
music: terry passing gas

Today I was waiting in line to check out of the HP Lovecraft Memorial Motel. It was about 3:00 on a sunny fall afternoon and a cowboy in a ten gallon hat, boots and a giant belt checked in, got his room key and wandered off down the hall. Relax, it only gets weird in Montana when they aren’t cowboys. My cell phone rang with a call from Don Bowman about flight information for tomorrow so I stepped out of line to take the call. I had taken a few photos of the hallways of serious weirdness and afterwards tucked my camera into my cowboy boot–not on my foot at the time, but stuffed into my overnight bag.

The door to the motel opened in front of me and I had all I could to not grab my boot, the one with the camera. So help me, they must have fallen off a cuckoo clock in a black and white movie. Thick Germanic/Austrian accents preceded them through the door and into my field of vision. He: crisp white Bavarian shirt with rolled up PRESSED sleeves, black and white suspenders and a black alpine style hat. I figured he’d have on lederhosen but nope, plain black pants. She: about five foot two and stocky, broad across the shoulder and the backside. Her face was arresting, small black eyes, a down turned pursed mouth a long nose that drooped at the tip and cheeks that would have been round and rosy except they drooped too. Sort of a white skinned German bulldog look. She had on a white kerchief tied over her head and under her chin, a la fairy tale wear. On the kerchief were large black polka dots. She had on a black and gray plaid dirndl with a matching plaid apron and a white puffy sleeved blouse. Thick black stockings and clumpy black shoes finished off her outfit–the final touch was the hair peeking out underneath the kerchief. It was rolled forwards and then backwards, again with the forties movie–oh how I wanted my camera. That much clashing plaid and polka dots was fabulous. I controlled myself and walked out shaking my head, sure I had been staying in an alien hive instead of a backwater motel.

I had dinner with my friend Kathy from Rocky Mountain College, located in Billings, and she said I was describing a Hutterite (hooter-ite.) She had just been in the hospital with her sister who was having a baby and a Hutterite mom to be was walking the halls with her mom. The girl was wearing her hospital gown, black and white kerchief, black socks and shoes. I wonder if she had the baby wearing her socks and shoes? Hmmm…. I wonder if the baby was wearing socks and shoes?

So long HP, I’m going home tomorrow.

September 24, 2006 A Tattoo in Billings

In this place No Smoking signs seem to be suggestions.

 I couldn’t resist taking some pictures of the HP Lovecraft motel. The Strange Door, the Incredibly Colonial Lobby with its massive brass eagle, the No Smoking Suggestions, the “Antiques” and the strangely elongated Hallways. I am illustrating this entry with those instead of tasteful  shots  of my tattoo experience. Some things you need to just go and see for yourself–like getting a tattoo. (Click on the photos for a closer view, especially the lobby, carved animals on the floor next to the desk are awesome.)

That being said, My Expectation of Wonder outlook paid off today with an I-knew it-would-be-like -this event. I finally got my own tattoo. I had to mark this time in Billings as a life changer and what is more permanent than a tattoo?

You can't see all the glorious detail of brass and AMERICA in this shot but the eagle is pretty special.

I found my tattooist while driving around Billings. I made a mental note of three different such businesses I spotted-two were related to each other and the third was just scary. I telephoned the one that had gryphon statues in the flower beds out front. The whole thing just spoke to me; the shop was in a funky little house across from the high school and down the block from a cyber cafe. I talked to Chris, the owner, and was really surprised to find it should only take an hour or so and cost me about $50.

The Mysterious Door Which Is Never Opened at the top of the stairs.

Terry was being moved from the ICU to his new room when my appointment was supposed to begin. I stayed with him until we got him to the new room and settled in, then dashed the several blocks over to Bodyworks. I had drawn the feather from my silver feather bracelet and intended to take the design I was thinking of. Serendipity, I forgot it and let Chris design it for me. I laughed when I read the release–the part about I’m an artist and if you don’t get exactly what you were thinking it is because I’m an artist and you aren’t….I have the same thing in my release.

The hallways are really lonnnnngggg, and dotted with antiques that are chained in place.

The place had wooden floors, live plants and framed tattoo art up on the walls all around the room. Red washed walls and a vaguely Oriental theme finished off the place with the addition of the trainee kid eating a pizza on a tatt table in a side room. Some god-awful hard rock rap crap was playing which luckily for my twitchiness segued to Doors and other serious oldies. Chris was rightfully proud of the job he had done making the curtains and covering the chair–which looks like a dental recliner covered in dragons under clear plastic. He got the fabric at one of the two 24 hour Wal-Marts in town.

An Antique which is chained to the floor, as is the sewing machine down the hall. All painted white. Reminds of that old joke. If Michaelangelo had been straight the ceiling of the Sistine chapel would have been painted Navajo white with a roller.

He said they are building a third Wal-Mart, which is just plain scary. Billings is the last stop before you fall off the edge of the world and east of here is nothing but plains, wheat and wind for a very long way. People drive from Wyoming and the Dakotas to Billings to shop–at Wal-Mart. Amazing. They have a good sized mall opened until 9 on Saturdays–probably to accommodate those who drive from Wyoming and want to shop after 6.

 There are lots of big box stores; Borders, Ross, Linens and Things, Pier1, Best Buy, etc, etc. I get the feeling it’s like an old school “Let’s drive to town its Saturday night” thing gone twenty-first century. Families load up kids and dogs and drive 200 miles to go shopping for groceries, filling the pickup with hot dogs, toilet paper and whatever gets you through the month.

I digress. Chris sat down and drew a beautiful little white feather with a black tip and around the top is wrapped a little cord just like the one on my bracelet. The feather is slanted down like it was just dropped and landed gently on my leg to the right and three inches above the ankle on my right leg. It’s beautiful, feminine and delicate. Below it in really pretty script is the saying; Hope is a thing with feathers.

I had written the words out and Chris copied them, luckily he asked where they came from and I quoted the Emily Dickinson poem at which point he went back and crossed the “F”, he had it down as “Hope is a thing with leathers.” Hilarious, leathers are what bikers call our protective gear, chaps, jackets, vests etc., all usually made of tough leather. In this case that worked, Hope was wearing leathers!

 The tattoo itself felt like it does someone pries a splinter out of your finger, not terribly painful but enough to make you flinch. I am glad I did it and I love it.

Why a feather? Because I have a sterling silver bracelet that I almost always wear. I wear it when I ride my bike and have since Terry got it for me on our California ride two years ago. I laughed when I chose it in Amador City, California. I told Terry as long as I had my feather I could fly–ala Dumbo. The Brits have a saying that when you are broke you don’t have a feather to fly with. The Emily Dickinson quote I chose seemed apropos for the times I am living in, I do have boundless hope.

Another surreal footnote to this whole thing has been the experience of staying at the HP Lovecraft Inn, in reality the Cherry Tree Inn, but HP Lovecraft fits it so much better. Add to that getting a tattoo in company with my son in Billings, Montana. Corey has the 82nd airborne combat patch on his shoulder now, it looks very cool and marks a life changing experience for him as well.

Hope is always with me

Turns out our tattoo host (is that tattoast?) is a writer as well. He asked if as an artist I had writer friends. We were both delighted to talk to each other because being visual and writing is inseparable for us both. He doesn’t have a lot of outlets for his stuff in Billings and I know sometimes it is easier to share your writer’s soul with complete strangers than intimate friends. Corey and I said to email us some stuff. I wonder if he is any good? I really hope so–probably rough as hell but hopefully lots of potential.
And  now  that I have written this down I feel sleepy enough to go back to bed and stop worrying about what I cannot change and get a grip on what I can.

TBI: September 23, Hope is a Thing That’s Molting

Billings is built in a "bowl". The airport is up on the rim of the bowl and the city, including the school and hospital are in the bowl as seen in this view.

Sep. 23rd, 2006 | 03:49 am
location: HP Lovecraft Memorial Hotel
mood: determined
music: helicopters landing on the ER roof

It’s 3:00 a.m. and I can’t sleep. I don’t know what woke me, my cold perhaps with its associated thick chest and hacking cough. I took four ibuprofen tablets and drank a bottle of water. I’m hoping if I can catch all my churning thoughts here I’ll have them nailed down enough to sleep.

Notes on this week: Terry was moved out of ICU and I like the room he is in, but I loathe the situation and most of the nurses. I got pretty used to having one nurse for two people. Now we have one harried nurse for half a wing. He has a “minder” sitting with him. The first one was an adenoidal brunette who was too stupid to live. A Goth nursing student? Please, spare me.

  The second one was a doll, she is changing to dental hygiene as her “major” so she won’t have to work nights–she has discovered nursing is not at all what she thought it was. I heard about her cheerleading career in high school and how she just couldn’t keep up with cheerleading and going to college. Darn…. the next one I didn’t meet because I  was so exhausted, depressed  and sick that I left before she came on shift.

Today Terry didn’t respond to me or anyone else. He groaned and moaned and thrashed around in bed and I KNOW it’s his back. He groans and moans and thrashes at home–but these spavined hacks won’t listen. I get “Well, we talked to Doctor Moron and he’s the best neurosurgeon around and he didn’t say anything.” Uh…honey, haven’t you made the connection yet? Moron is a HEAD doctor now get your HEAD out of your ASS and call one of the other three doctors treating him. I called in to check on him tonight and after two calls and 20 minutes on hold I got “Chris”, whom I shall be pleased to call “Piss” who called Terry a head case and said that he was fine. He wasn’t up roaming the halls like the serious head cases and she went on to give me a laundry list of hideous behaviors that he MIGHT be exhibiting, attempting to make me feel better because he was just in bed in pain thrashing around. And, she reminded me he had a minder. I think they just drug the folks once out of ICU and warehouse them at night. I want to go HOME.

The topper of my week: These idiots also OPENED, REFUSED and RETURNED the box I had Heather send with all the bills and insurance information. I followed their directions to the letter in addressing it, delivery address etc. but some Montana pin head with horse shit for brains couldn’t turn around and look 20 feet to see if there was someone in the damned room–which there was about 16 hours a day. I want someone’s head on a plate. The nursing staff does too, but that doesn’t mean it will happen. However, I will write an EVIL letter to the administration of this place when I get home. ICU yes, everything else, no.

In order to get out of here we have to have someplace to go. I took an on line tour of the rehab center in Olympia attached to St Peter Hospital and it sounds like Terry will get some intensive rehab care there.

 Today he was just unreachable, grunted and groaned and said “Okay” twice but that was a parrot answering a memorized response. He just looked so puzzled about everything and he was not connecting in anything but the most tenuous fashion. He patted me and the nurse comfortingly and had tears in his eyes. I am beginning to learn the agony of head cases now. One day seemingly bright, the next hopeless and it’s a cycle that repeats again and again as microscopic steps are made forward and backwards.

Things are sinking in now. I see his number on the telephone and remember the last call he made and I almost fall apart just thinking of his voice and the walls of love and protection that were around me. I’m pretty much feeling like I’m alone in the wilderness. I have to figure out things like how would Terry like to replace the limping microwave and can I do it myself? Things he would just take care of are now my responsibility. I hate it more than anything when people tell me, don’t lose hope, it’ll all get better. WTF? Who are they talking to that I’ve missed? I’m sure I’m going to blow and get up in someone’s grill one of these days. Walk in my shoes and then get back to me, K?

Yesterday I saw that moving Terry threw him for a complete loop. He has to make sense of this new environment and it’s so hard for him. I know his whole family wants to descend on him and hug him next week when we get home, but I’m afraid they will have to see him one at a time spaced apart and be quiet. EVERYTHING I read and hear says quiet, relaxed, low stimulation from outside sources is critical. I guess we’ll see.

I felt buoyed up suddenly earlier tonight, the weirdest feeling like everything would be okay. I could almost feel the prayers coming this way and I thought I could fall asleep. I will NOT give up. I used to wake up in the morning as a kid and bounce out of bed looking for the wonderful thing I just knew was around the next corner. Growing up is losing that expectation of wonderfulness. I have opened my mental closet and rummaged about until I found it, a bit wrinkled but serviceable and I have put it back on. It’s a little small and tight, but I can work with it and right now I need my expectation of wonder with me all the time.

I think that writing this down has given it some form and I think I can let it go for awhile, at least long enough to sleep.