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Saturday, May 18, 2013





When someone hears my story about the medical malpractice that paralyzed my face, invariably they say, “What goes around comes around” or “He’ll get his.”  Some talk about “payback” or say “Karma will get him in the end.”  I get it. It’s a way to make me feel better. But it doesn’t.

It doesn’t because if he’ll “pay someday” or if life “takes care of it” then I have to ask the other side of the equation:  Is my pain the result of my bad Karma?  Is the malpractice, and the stopping of my life and dreams, my payback?  After all, if he’s getting his, am I getting mine?

I think about the clichés people use when confronted with a situation they do not understand or know how to deal with.

“God never gives you more than you can handle.”

He doesn’t? Then why is my pain overwhelming? Why am I struggling so hard to live with it? Am I a failure because I can’t handle it?

“It could be worse.”
Worse then what? Cancer? Losing a loved one? Of course not. But you know what? Pain consumes our lives and it consumes my life. When it doesn’t, it stops me from being involved with life. It keeps me isolated and drugged.

No. I am sorry. I already know I have it better than many people.

I think of my eye, my face, as separate from my body. Many of my doctors also see it that way, saying “I can’t help you because your pain is above the neck.”

My body works. I can get out of bed in the morning, dress myself, walk, bend, do everything a body needs to do. That puts me ahead of many, including many who live with chronic pain.

I have a roof over my head and enough money to get by, at least in the short run. That puts me in a better position than many others who are not as fortunate. I try to remember that, but when you say to me “It could be worse,” I feel worse. I feel chastised.

I have had 12 brain surgeries to try and help the pain. My head is a mass of indentations, soft spots, scars, and additional problems because of the operations.  A few years ago a friend told me, “You’re brain damaged.”

I was glad we were on the phone. I did not want her to see my reaction. I was appalled. And angry. How dare she say that! That expression is fraught with meaning, not a lot of it good.  But wait. She was right. I am brain damaged.

I hate writing the sentence, much less acknowledging its truth.

“You need that like you need a hole in the head.”  Oh please. Don’t say that.

As a result of a problem with another surgery, my neck “fell down.’ I now have 2 clamps and 12 screws holding my neck up and in place.  “You have a screw loose.”

Even though it’s a joke, I flinch when someone who knows about my neck says it.

“You have it so much worse than I, so I can’t complain.”  Sure you can. Your misery, while you have it, even if it is just a bad cold, is as awful for you as my pain is for me. I know a cold vs. chronic pain is a mismatch, heavyweight vs. lightweight, but my pain does not negate yours.

“Life isn’t fair.”  “Whatever doesn’t kill you makes you stronger.”  The first is definitely true, but the second? Maybe.

When life, your friends, even strangers, hand you a cliché, when lemons seem the order of the day, sometimes you just need to ignore it and do something nice for yourself.

Me? I think I’ll go make some lemonade

Reprinted from my column on National Pain Report.
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  1. So true about the cliches, I have learnt to laugh with them now... People don't understand and I can't expect them too, some of friends use the cliche cause thats how they handle it... Hope the lemonade was nice :)

  2. Thank you for your blog. After losing 125 pounds and feeling better than ever, I have been having chronic pain issues for the past 5 months and am at a loss on what to do next. I've decided to dive into holistic treatments. Feel free to look at my blog. I'm open to suggestions that have worked for you.

  3. All the way through this I was nodding me head as you've pretty much summed up how I feel about cliches. I mean, does the fact that someone else has cancer negate the fact that I'm in pain? And likewise, does the fact that I'm in pain negate the fact that my best friend is having life problems? Of course not. I hate the two opposites of 'it could be worse' and yet constantly reminding me that some aspects of my life suck, simply by avoiding talking about anything troubling them.

    The other thing I hate is 'but you're so young', I mean, seriously, what's that got to do with anything (other than making me feel like I'm missing out on something)?

  4. Hi Tamara,
    That is one I didn't think of, and I agree, what does age have to do with it, and it has the same effect, it is thoughtless.

  5. The cliché I hate the most is "I did it. So anybody can." It's not true. Just because one person does something that doesn't meanit is so simple. It just means that they did and they should be proud, but they shouldn't put that expectation on others.