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.
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.
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.
Thank you for sharing your story about Terry. I’m a new follower of your blog, recommended by recently meeting your friend Nancy Gallagher. I’m a native Oregonian living in upstate New York–I was an English professor before I suffered a serious traumatic brain injury in a car accident three years ago. My whole life has changed; I’m been helped immensely by all the connections to local TBI survivors and caregivers, despite my own versions of the intense challenges you describe with the American medical system, insurance and Social Security bureaucracy , and general lack of public awareness about the “invisible disability.” Just wanted to say you have a sympathetic virtual ear toward your future posts.
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