I am reading the book, Handle with Care, by Jodi Picoult. This is the 3rd book of hers that I have read in the last month. She has a child who had multiple surgeries in a short period of time, and she clearly understands the absurd, maddening world of fighting insurance companies who are simply trying to line their pockets and don't give a rat's ass about customers. It is relayed crystal clear in the novels.
Picoult also shares the irony of how people wish to make themselves feel better by checking in on a sick person once and then their job is done. Problem solved--at least for them. Guilt resolved, they did their duty.
Here are some personal favorites from Handle with Care, after their 5 year old with Osteogenesis Imperfecta suffers her 50-some-odd fractures, 3 simultaneous compound fractures of both femurs, sustained by slipping and falling when she stepped onto a napkin:
"People ask all the time how I'm doing, but the truth is, they don't really want to know...the whole time they are thinking, Thank God. Thank God it was h er, instead of me."
"...folks who are trying to be kind would rather do it with a macaroni-and-cheese bake...you hand off a dish and you've done your job--your conscience is clean."
"If they really wanted to lend a hand, they wouldn't bring macaroni casseroles...they'd rake the gutters of the house...call insurance and spend four hours arguing over bills..."
And my favorite of all; though this is written as the mother of a disabled child, I can completely understand it from the point of view as a disabled adult. 100%. And it makes me want to spit nails, thinking of the hundreds of contacts I have taken out of my phone book and email list over the 5 years since diagnosis, because looking at me is too much for them to handle. Yet how is it I have still accomplished more with my life than nearly any of them?
"It's superstition: if you give assistance to the family in need...then you'll be immune. Maybe you'll convince yourself that this could never happen to you...Other people look at me and think: That poor woman; she has a child with a disability...But all I see is the girl who had memorized all the words to Queen's "Bohemian Rhapsoday" by the time she was three, the girl who crawls into bed with me whenever there's a thunderstorm--not because you're afraid but because I am...I would never have wished for an able-bodied child, because that child would have been someone who wasn't you."
My husband and I have been letting people know for months now that we're participating in the brain walk next week for the 3rd year in a row. We had a party yesterday to raise funds for it. Considering I've had 16 surgeries, most of which they've been around for (well around 6 hospital stays were in another state, and 2 were in Phoenix, so they couldn't "see" me for those; the rest were local though but for all but 2 nobody ever visited me though I was in for 5-6 days each with the local ones, unbeLIEVably depressing to spend a week alone while DH is working and kids are at school and not see anyone 24/7 for a week).
2 people showed up yesterday. We were pretty shocked. Appreciated it of course, tremendously grateful for their support and had a great time with them, lots of laughs and camaraderie. In our hearts though, it felt like a punch. Where were the other 50? No calls? Emails? Well-wishes? Sorry we couldn't be there but good luck, let us known how it turns out, we know how important this is since it's what is KILLING you?
Yeah. That little part. Killing me. God forbid someone TALK about that. If they talk to me to RSVP they may actually have to look me in the eye. GASP.
I am something besides a brain patient you know. I am a mother. Remember that? I have an 8 year old little boy. He loves Transformers and Nerf guns and hates bullies and loves his glasses because it makes him feel like Harry Potter. I also have a 7 year old daughter who kicks butt at karate, has no social graces, and can make you bust a gut laughing when you least expect it with her commentaries on life with vocabulary that could rival any high schooler. I'm an avid crocheter and love to sew as well. Are people afraid of me, think I sit at home and cry all day? Get real. I don't have time for sitting with my thumbs up my ass, weeping and moaning. It won't heal me, it won't extend my life, it won't make the quality of my life any better, so get on with it. I do what I can, when I can. When I can't, I don't, but I'm sure not going to sit and cry about it. Moving on.
But I have so much anger pent up over the last 13 months from something my family is going through that I cannot write about, that I am pretty much a big bottle of anger from it. It is magnifying everything else in life and bringing it to a head, including 5 years of dealing with people who refuse to deal with problems in time so they can be able to talk face to face and have a relationship with a person who may not by here by the time they got around to it otherwise. I like friendships. I like knowing people. I find I learn something from each person I know. It's why I so greatly enjoyed my life as a teacher.
Before you go judging me that I am pushing people away too, I am also angry at myself. I am angry that people are putting the people I love in this position, when people are supposed to be partners. When friends do this, what do they do to their enemies? In this case, it is truly a terrifying question and I must leave it at that.
As for the people with whom I have been putting up walls around me, what started as guilt has turned into a tiny bubble, the possibility of anger. I don't want to think it. I don't think what was done was meant. A wonderful gesture was given, no strings attached, at one point. Maybe we shouldn't have accepted, but the younger my kids have been, the more I wanted them to reach an age where they would have memories of me that when they were older, they would know that the memories were valid, and not just something they conjured up based on stories they heard adults tell about me. I have never wanted to still be here, not for a long time now, not with all this intractable pain that there is no answer for, will never be an end to, not when it is all system wide. But I accepted that one (and did the few local after that) because of my kids.
And nothing changed here. There are a couple of good folks I am proud to call friends who are still there despite me not usually being able to be out of the house. They accept that and understand why. But it occurred to me: was that gesture given to me that time, WERE there strings attached, but for the people who gave it? Was it rather like one BIG macaroni and cheese dish? A way to not get too involved, to just let US do it, "if you don't step on the cracks, maybe you'll be immune. Maybe you'll be able to convince yourself that this could never happen to you."
I don't like to think it, but what else am I supposed to do with these thoughts? There's no one sitting here, now is there?
Anyway while I'm here, next week's our 3rd annual brain tumor walk. Here is where people can donate to our team, which would be greatly appreciated. Thanks!