Monthly Archives: January 2016

Grace and Gratitude: Accepting Money is Awful

 

The cover of the benefit thank you card

The cover of the benefit thank you card

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

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

Dec. 11th, 2006 | 12:15 pm

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

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

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

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

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

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

terry ticket

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

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

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

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

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

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

Back from Billings, in the Belly of the Bird

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

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

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

Loading onto the plane

Loading onto the plane

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

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

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

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

On our way

On our way

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

Nurses tending to Terry

Nurses tending to Terry

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

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

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

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

Mt Rainier means we are home.

Mt Rainier means we are home.