Monthly Archives: February 2013

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.