Chiari Defense System


Chiari defense system

For more than two years I have felt the unrelenting pain of my head and had to deal with my slowly deteriorating body.  All this while apparently looking “normal” on the outside and boy has that really shown me the true colors of the people around me.  Many have rallied to my side, not really understanding what I am going through, but understanding that no one subjects themself to brain surgery because they are a hypochondriac or because (really) a doctor didn’t feel it was the best procedure to save their life or their body from further damage.

I have a “friend” who does not apparently understand the grapevine theory and she feels that since I can post on Facebook and Instagram and I am not (always) bedridden that I am just faking it. I don’t even have the energy to hash this out with her.  After knowing her for sixteen years, and the type of person she is, and the things she has said about other people, this is just the kind of thing she would say.  I am not messed up about it.  we were never that close anyway.  I just put up a brick and block her out, like I do with doctors that don’t listen, church-folk who recommend kale, strangers who look at me crazy when I wander the grocery store and anyone else who is just a distraction.

The people eventually get easier and easier to block out.  Stop answering the calls or texts. go to a different church service, move if possible, change that phone number, get transferred at work.  I know how to avoid people.  If forced to, I will use the strongest tool in my arsenal; ignore you to your face as you speak to me in a room of people and just keep walking.  I just made you disappear before my very own eyes!  Like magic!  Although, I prefer to not have to do any of that.  I just want to be treated with dignity.

As you can tell from the picture, no matter how tall the wall is, I am always under this emotional attack.  Depression made it in.  It’s in the ground and boy has it done some damage.  It, along with hopelessness in my leg, are robbing me of being able to see any kind of positive future.  At least not here on Earth.  I am bombarded by the assumptions of those who have little to no knowledge in the field of neurology or neuropsychology, figuring that hot onions cured their headaches so they must be the Balm of Gilead and that is what I need.  Well, that and kale, of course.

Everyday I am attacked by an invisible enemy that causes pain mostly in my head but can make anything in my body hurt, or everything.  When I wake up in the mornings, I wait before I do anything.  I could have spent the night brewing a nasty headache and sometimes it takes a couple of minutes to knock the wind out of me.  I anticipate pain in the morning and become suspicious when it isn’t there.  I cautiously enjoy the day, but I spend each hour wondering when the headache will return.  It doesn’t go away for very long.

When it finally makes its reappearance, I fear how bad it will get, how long it will stay at a high intensity.  If I will have to go to the ER. If I am going to miss an engagement.  If I am going to disappoint my daughter.  If I am going to be “the flake” again.  Really, I find it to be a wonder that I don’t have heart trouble as I live in a emergency-prep mode all of the time.

Last, there is a loneliness that comes with chronic illness.  Yes, my family is the best family I could ask for. I have friends that are wonderful, kind, loving, understanding (many are in the medical field), and compassionate.  Yet, none of them know what it is really like inside.  Where I have no real memories after 2015, where I can barely read sheet music, where I pace the creaking floors of my mind wondering how I am going to care for my daughter? How am I going to care for myself? Where the accomplishments of my life gather dust and lose importance as I no longer strive to be the best, I now struggle to exist and just be.  It is a loneliness that impresses its signature on your soul and you can always feel when that same mark is upon someone close to you.

We are all warriors, fighting the battles we have been assigned in life.  We can’t really judge whose is worse, better, shorter, or longer, because it doesn’t matter.  We need to remember to fight for each other, not against each other.  Don’t force people to put up their walls because then no one may be able to help them some day.  Have some compassion.


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