I Am A Liar

September 14, 2015

I am a liar. I am a total, complete, unrepentant, unadulterated, compulsive liar.  I have honed my skill to professional levels.  You would not be able to tell I’m lying.  I am JUST that good!  I know you think I’m boasting but I’m not.  I’m simply stating facts.  I’ve had to get this good.  It’s a matter of being able to walk through this world with my head up.  Sounds stupid doesn’t it?  Let me explain.

“How are you doing?” isn’t really a question.  It’s a social nicety.  It’s a segue to other social niceties that lead to quick getaways by people who can all then feel like they have had an acceptable social interaction without having to risk any real personal involvement.  On the other hand, for someone with a chronic illness/chronic pain it’s a minefield question.  Some people actually ask that as a real question.  When you give them the lie answer they feel betrayed when the truth comes out.  Others ask it as a  social question.  If you give these people the real answer they act like you just defecated in their dinner.  For a person who’s concentration is 80 percent involved in not screaming, trying to determine which of these people is which is very difficult. No matter which course you choose you are going to have to see a look in someone’s eyes that makes you miserable.

Luckily the chances of running into someone who really wants to know how you are feeling are almost nil so your best bet is to go with the “I’m fine.” lie.  This is the lie everyone is expecting to hear as well as the one most likely to be given out in response to the same query by you.  You don’t run near as much risk of watching someone imagine stomping a large ice pick through their partner’s ear for asking the question if you just go with this response.

“Are you ok?” I just say yes.  If I’m sending gouts of arterial blood shooting skyward hundreds of feet I’ll still say yes.  It’s my go to response.  Most of the time everyone is happy to just let it go.  I whine far too much as it is.  I want to slap myself silly sometimes just to shut me up even when I’m only thinking it.   So if I fall down or twist my ankle or drop something on my foot or stumble or hit my head or run into the doorframe or knock over the lamp or any of the hundred and seven other things I do in a day and I get asked if I’m ok I say yes.  It’s always a lie.

If you just say yes, I’m ok,  then you don’t run the risk of watching the look of social concern turn to “oh crap not again” when you start to say what’s wrong.

Here are a few more examples of my lies:

I’ve been praying for you! Do you feel better?          Me: YES!

Did you try that oil I told you about to cure your incurable condition?          Me: YES!

Did you eat that exotic food I heard about that will cure your incurable condition?         Me: YES!

Did you do that strange exercise I read about that is impossible for the most physically fit Olympic athlete to perform but you should do it because I’m sure it will cure your incurable condition?         Me: YES!

Did you find that obscure treatment I sorta remember from that book or magazine I read that one time somewhere that told about that medicine that could probably cure your incurable condition?          Me: YES!

So when people ask me how I am I lie.  I tell them I’m fine.  I say I’m OK.  I tell them I’m doing pretty good.  That way I won’t be ashamed anymore.  I won’t have to see those looks in their eyes anymore.  I won’t have to see the regret for asking the question anymore.  I won’t have to feel the humiliation of realizing that they didn’t really mean they wanted an answer for the question.  Or the disappointment that they went to all the trouble to find the one herbal remedy that would cure me and that I’m clearly too ungrateful to try it, just too much of a whiner to want to get better.

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My Life With Chiari

June 13, 2012

I wrote this for a lady on a Chiari website. And since I’m whining today I decided to post it here too.

 

Looking at my life since Chiari is like looking through the wrong end of a telescope. My life went from active and open with every possibility to minimal in the extreme.  Over the roughly ten years since I was diagnosed with Chiari, I have gradually whittled away pieces of myself, my activities, my dreams, my relationships, and my possibilities.  I am left with the knowledge that I am less.  Less than I could have been, less than I want to be, and less than others expect me to be.  It is a constant humiliation. It is a constant pain in so many ways that it’s hard to imagine putting them all on paper.

 

I live in an almost constant state of dread…..I dread the beginning of each day because I know that before the day ends I am going to wish I lived a hundred years ago when people died early.  I dread laughing because if I do, people are going to expect me to do things that I either can’t do, or that I know if I do them I will pay for them later.  I dread the disappointment in the faces of the people I love when I say I can’t. I dread housework. I dread parent teacher conferences because I am usually so distracted that I can’t ask questions, I can’t think right, I can’t make promises. I dread getting a great idea because I know that it will come to nothing, because if I don’t forget it all together, I won’t be able to follow through and that is one more disappointment to add to the millions of others I’m stacking up.  I dread, and when I say dread I mean DREAD going to the doctor.  I have apparently been branded as …..I’m not even sure what. Every time I walk into a doctor’s office, they take one look at my file, smirk, and shake their head.  I am apparently an idiot because I walk in with hope every time and I walk out wishing a really big heavy truck would just hit me and take me out of this. I dread coughing(headache), using the toilet(headache), changes in weather(headache), heat(dopiness), happiness(creates expectations I can’t meet), sadness(thoughts of suicide), hope(leads directly to devastation), open spaces(nothing to hold on to), battery operated toothbrushes that my dentist HIGHLY recommends(makes me fall down if the casing touches my teeth), driving or riding in a car(obliterates my consciousness), other people’s hopes(disappointment), dreams and desires(disappointment), other people’s disappointment(wish I was dead), waking up(what new symptom, disappointment, limit), going to sleep(what will happen in the night to my brain), Wal Mart or any other store(makes me sweat and lose my mind), cooking(can’t remember the order of things to do), gardening(poor plants), mowing the lawn(vibration of the mower screws my brain to pieces), school programs that take place after 4:00 pm(too tired, too brain fried to go). This list is longer than there is time to read it.

 

I live in fear of the fallout from my symptoms. I fear open spaces because I fall(broken ankle complete with a metal plate and nine screws from stepping off of a 6 inch porch). I fear going out in public(because I have bladder and bowel incontinence). I fear that my husband and kids will get sick to death of all the things I can’t do and gradually disappear just like the rest of my life has. 

 

I used to have a life.  My husband and I used to go all over the place doing all kinds of things. We used to go to Bike Week at Daytona Beach in Florida every year. We used to go camping. We still go camping but it’s a huge production getting all my ridiculous accessories ready to go with me. And every time we screw up the desire to do anything it’s always with the knowledge that at any moment from start to finish I might have to just come home.  I used to have a job and be a contributing member of my family and society. Now I can’t remember anything.  I have lost large blocks of my life. I’m not even really sure anymore who I am, much less who I used to be because I have lost so much of myself.

 

I used to have friends. But little by little people drift away to find people who can DO things with them.  I’m ashamed to invite people to my house because I can’t keep up with housework.  I can’t bend over to pick things up, I can’t lift my hands over my head to sweep down the cobwebs, I can’t stand very long so the dishes are constantly piled sky high, I can’t even wash my hair regularly because I can’t close my eyes without falling over and I can’t hold my arms up very long to wash it, and, and, and, and. I get FUBAR’d when I ride or drive. 

 

The last time I actually tested my IQ(which was in the early nineties), it was 147. Not bad, right? Well…..it’s not good. Because I’m stupid most of the time. I used to be witty, and funny and smart. But now I get a joke the next day if at all. Partly this is because I can’t tell what people are saying.  My neurologist had my hearing checked once because of that, even though I told him that I could repeat back to him every word he said verbatim, I just didn’t know what those words meant at the moment.  That 147 doesn’t work in my favor at all.  Everyone just thinks I’m lazy, I’m lying, I’m conniving.  I went to a neuropsychologist twice. The first time she told me that the only person who had scored higher on her testing was a Neurosurgeon.  The second time I went I scored higher than him. Then she told me that there was NOTHING wrong with my brain.  After that she leaned in close and whispered…..Are you trying to get on disability?  I was so humiliated, so ashamed of myself for even being there, for wanting to find out what was wrong.  And now, even though it would help immensely, I’m too ashamed to file for disability. And every day I wait, the money I would get for it dwindles down.

 

One of my pupils is smaller than the other. Sometimes I get this thing, it’s hard to describe but I’ll try. I feel like I’m being choked only not choked of air. I can breathe just fine but when you hold your breath for a long time your face gets red and your eyes bug out and it’s like that. Just this pressure in my head like it’s trying to explode. Then I hear a buzzing sound that seems to match a heartbeat and I hear what sounds like the whoomp whoomp whoomp of a helicopter. While the buzzing and the whoomp are going on I see blue flashes of light. Neon blue. It’s really pretty. After that the pressure goes away. But while I have the pressure, the size of my pupils is REALLY different. That one scares me. I told my Neurologist about it and he set me up an appointment to have my CSF flow checked….a week later. I guess I’m stupid for wanting to have it checked while it’s happening. I’m really not sure anymore what I should expect, what’s stupid, what makes sense. Nothing in my life really makes sense anymore.

 

I hurt. Physically I am in pain almost constantly. Emotionally I AM in pain constantly. Mentally I’m too stupid to be in pain constantly and so I continue to hope. I hurt in my neck, my back, my arms and legs to a lesser extent. I would give anything on this earth to just get a massage, a neck rub. But my family are terrified to touch my neck. I feel like a leper sometimes.  Years ago I would still ask for someone to just rub my shoulders for a minute. Now I never even consider asking anyone to touch me.  My skin starves for some basic human contact. Instead I just get someone to put my TENS unit on and then I cry for a while.  Cripes I sound so damn pathetic!

So there you have it. Look fast because pretty soon you won’t be able to see me anymore.


My Big Day

October 27, 2011

A couple of days ago I had the best day I have had in so long I can’t really remember. It was awesome!

No, I didn’t win the lottery or Publisher’s Clearing House.  I didn’t get a free trip to the Bahamas.  I didn’t get anything….except to feel fantastic, incredible, happy, healthy,   normal.  For me normal is the highest height I can aspire to.  It’s the highest feeling I’ve had since I got FUBAR’d.   (Thank you Arnold Chiari Malformation and MS….you suck a big green weenie)

It started when I woke up at 4:30 am.  Very unusual for me lately.  Normally I would hit the snooze about seven times and sleep until almost 5:30 am.  But I felt really awake and so I rolled with it.  I got up and fixed homemade biscuits and sausage for everyone for breakfast.  After I got everyone off to school and work, I sat down to read for a few minutes.  When I looked up again I decided that feeling normal ROCKS and so I would use that time to do something constructive.  I proceeded to clean up my paper avalanche around the computer.

When I die it is going to be from being suffocated by a large pile of paper that I couldn’t think well enough to decide what to do with. 

So I put the FAT principle into motion and divided everything into three piles: File, Act, Toss.  That eliminated about 90% of the paper.  Then I filed the F pile and that left me with the Act pile.  So far so good.  Then I tossed 3 years worth of old files and dug down to the current page of my desk calendar.  That right there is more than I’ve done in months and months. 

After I was done, I could actually get to my computer without climbing any paper mountains and without a native guide.  I was happy.  I then went grocery shopping with Rocky and Pony.  When we got back I put away groceries, loaded the dishwasher, did some laundry, and fixed dinner. 

Sounds like a small fraction of anyone’s normal day, doesn’t it?  Yeah, I know.  But for me it was like a life orgasm.  I got to spend a day being sorta like I used to be.  You know, like a real person.  Like a human being that can get up in the morning and look around and say…..I need to do this and this and this…..and not mean ONLY this and this and this but mean in addition to my normal stuff. 

What I can usually do is get up in the morning and look around and say to myself….how in the name of God will I ever be able to catch up with all this stuff?  Then I get really optimistic and say to myself….just pick a couple of things to do and don’t worry about the rest.  Then I look around and there is just SO MUCH that I haven’t done that I can’t decide what needs doing most.  Which makes me feel like a total slug and worthless in the extreme.  Then I get to feeling bad about myself and it ends up where I spend most of every day trying to keep from cutting my own throat for being such a worthless excuse for a human being. 

Because I can’t lift my hands over my head because it messes up my neck and I get headaches and vertigo, and I can’t bend down because it makes me dizzy, and I can’t stand up straight for long because it makes my knees go numb, and I can’t and I can’t and I can’t and I can’t……..!  My entire life is the things I can’t. Sometimes I just go ahead and do it anyway.  Then I spend days where I can’t think good, I can’t walk good, I can’t talk good, my head hurts, my neck hurts and that damn screaming tinnitus will not leave me alone.  I don’t understand what people are saying to me, and I don’t get what they want and I don’t know how to say that I don’t get it.  I am terrified of becoming stuck in that state one day.

But the other day……I had a GOOD day!  I live off of those like they are food.


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