So You Understand Chiari Do You Journals

So you are researching Chiari Malformation for a family member?

Oct 08, 2016 - 0 comments

Well firstly- Fellow Chiarians, please forgive but no doubt you've been there...

This note is to those who don't believe your family member, friend, workmate or whoever really has it that bad with Chiari Malformation. That perhaps they overplay the condition for whatever reason you seem to have convinced yourself. Well let us shed a little light on things that will help you see just how true your reasoning is in reality.

Yes, we know you have headaches too. No doubt you've read up on what  a Chiari headache is like and feel it's no worse than what you deal with now and then right? Perhaps you've heard that they often start in the back of the skull and radiate forwards at times. That's no different than what you deal with now and then right? Let's take a look at that ....

What makes you think that these random posts that you have read mean you 'understand' what a Chiari Headache is really like? You can trust this - all Chiarians are thankful that you DO NOT HAVE A CLUE what a chiari headache is really like. That doesn't mean you don't have headaches. Migraines even. Many of us also deal with migraines and know first hand that they are no joke. However to compare a migraine to a intracranial headache from Chiari's hateful arrogant eye is even comparable is just as stupid as a 12 year old girl thinking she can handle giving birth to a child and caring for it. I won't say that makes you stupid as a stupid person is one that isn't willing to learn and if you are still reading instead of ranting than obviously you want to learn. However, if you still belive your migraines are even on the same planet as the headaches that many chiarians deal with does make you well... not the ripest grape in the bunch.

For whatever reason mankind in general seems to think that whoever has the most painful or plentiful scars wins the battle. That is complete bull droppings!!! I guess if that analogy carries any truth to it than the man with the nicest truck buried in his casket with him also wins, right? Every human being is imperfect and has their own issues to deal with. To each person at times these issues are or can seem overwhelming. Who's trials are the hardest or the most painful isn't the the issue. To those who feel the need to prove their life is harder and Chiari is just an 'incidental finding' so not a big deal... well I'm thankful that you are painfully ignorant of the effects of Chiari on ones life. Why? Because to understand you would have to be living in the body of a chiarian. You would have to be listening to yet another fool like yourself who thinks it's a game to see who has the most pain.

Now if you are still reading... then obviously some of the above doesn't apply to you as you genuinely want to understand. I hate to tell you this but a huge part of dealing with Chiari Malformation and the after effects is contained in the paragraphs above. You see the headaches, drop attacks along with various incapacitating central nervous system issues are only made worse by stress. So many people have the attitudes of those we are speaking to above that it makes dealing with Chiari so much worse, so much more painful, so much more frustrating that understanding how people treat us is a huge part of what Chiari Malformation really is all about.

Don't understand what this means? What central nervous system issues? It's just a headache right? Not even close... think about it. What does your brain stem do for your body? Not sure. Consider this... many times a sniper is taught to shoot at that quarter sized space just below the cerebellum. If they hit this it's certain death as when they hit the brain stem they have wiped out life functions. Well guess what? That quarter sized spot is what is greatly effected by Chiari Malformation. So mock heart attacks, random numbness in different body parts or for some even temporary paralysis and or mock strokes are a part of life. We could go on but if your desire really is to learn what your friend or family member deals with then do not say "I get headaches too" do not say "Oh I deal with that stuff all the time you just have to ignore it and go on" or I so love the " try Excedrin it works for me". Many other thoughtless comments such as these have been heard by me as well as others here so if your desire is to learn and truly show empathy.... don't talk, listen.

Now, this most likely sounds like the rants of a mad man. Not at a all. In fact they are the words of someone quite different than that. My own mother used to counsel me because I didn't get upset with people calling me a cripple. {Yes, in my case that is yet another evil gift from Chiari Malformation}. No, it's just an effort to make you think before you speak. Be glad you DON'T know what a Chiari headache is or feels like. Just quit trying to understand what you can not understand. As a professor and engineer I respected dearly used to say "you can't teach a man to understand what he just doesn't have the capacity to understand." If you personally don't have Chiari you don't have the capacity to understand. You do however have the capacity to find empathy, not sympathy there is a huge difference, to be compassionate and perhaps even helpful.

Still not sure... that's ok, to admit you don't understand is the beginning of understanding. I'll give a hint to ponder. Unfortunately I've had more surgeries than my age. During several I have woken up due to my bodies resistance to medication. The last three were all abdominal surgeries. One my guts where literally lying on my belly. I laid and watched the surgeon cut me until they noticed me awake. This past one my liver was partially out of the rib cage... well I'll spare you the gore. The point is the pain I felt from those surgeries was so much less than the crushing pain of Chiari that I laid there calmly watching as it was literally nothing to me. Literally. If that sounds hard to believe then consider again in your mind "is Chiari just a headache like you get?" because I kid you not. The pain of surgery is much less than pain from a severe chiari attack.

Shutting up for now, though I do hope and pray at least one person has enough empathy in mankind to 'listen' not talk the next time some one needs to talk about what they are going through. None of us know what the other person is dealing no matter the issue.

CW shutting my trap now

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