Warning - Rant Ahead

I should move to Hollywood and become an actor, because I know that I would end up winning an Oscar or an Emmy.  How do I know this? It’s simple…thanks to Chiari I have become great at deceiving people, or just flat out lying.  Now don’t go condemning me to hell just yet or think that I’m a horrible person, let me explain.  There is one question that I have come to dread, it is the most benign query that someone could make…”How are you?”  I know you don’t want the real answer to that question so I will smile, look you straight in the eye and lie to you, my answer will range from good to great.  Come on, lets be realistic about that question, you don’t want to hear that my head is killing me, that I still get numbness and tingling in my arm, that the tinnitus is driving me crazy, that I still get dizzy spells, that I still have trouble finding the right word, that I still can’t seem to regulate my voice.  I had surgery so I’m supposed to be better, and you were just asking a question that we all ask without thinking, so I’m not going to tell you the truth.  Besides, even with all of the issues I still have I feel so much better than I did pre-surgery that I have days when I really do “feel good”. 

Another reason to lie when people ask me how I’m doing is that it saves me from biting my tounge and helps to keep my temper in check when I get this wonderful response… “well it could be worse”.  Yeah, no shit it could be worse.  Don’t you think I know that?  I know that I could have some other terrible disease or be dying or be totally disabled.  I know that, but thanks for totally dismissing me and making me feel like an ass for telling the truth about how I feel.  I’d rather have you tell me how you really feel and just tell me to shut up. So as you can see, lying just makes day-to-day interaction easier.  If I could find a way for other people to live just one week - hell just one day - with Chiari, then maybe they would be more understanding and not make me want to punch them when they say “well it could be worse”.  This is the problem with Chiari.  People expect you to be 100% because you had surgery and you “don’t look sick”.  Unfortunately decompression surgery isn’t a cure; it’s performed in the hope of alleviating some of the symptoms.  Some of these symptoms might go away with time others may not and new ones might emerge, everyday is a surprise when you have Chiari.

I have perfected smiling through the pain or putting on my “game face” as Michelle over at Constricted Cranium calls it.  I don’t listen to my body; it’s more like I completely ignore it.  On days I feel like crap and should be lying down in a dark room I ignore the pain and push on doing things because it is expected of me.  Not only by others but I also expect to be able to do everything I used to do, so I will push myself far past what my body is telling me I should do.  Is it smart to ignore my body on the bad days, no it’s not and I often suffer the consequences for it but I don’t want people looking at me or treating me like the sick guy, and I don’t want to be perceived as weak.  It may sound dumb but sometimes what gets me through the rough periods and helps me keep my game face on is a quote from the penguins on Madagascar “smile and wave boys, smile and wave”.

I’m not having a pity party and I’m not trying to get sympathy with this rant.  It’s just sometimes I need to vent and this blog is the only way to vent without hearing “well it could be worse”.  So do me a favor when you see me out and about, don’t ask me how I am, instead just say “what’s up?”