When I was diagnosed with Chiari I was scared, reveled, upset, sad, alone, confused and all of the above. Some people (family and friends) still at this time hold the things I went through over my head. As a person that is ill we know that there are many steps in what we go through and some we don't remember and some we except and move forward because we have no choice but to learn and grow. Then we have the issue with the friends we have that have not been forced to grow with us and we don't grow in a year or a decade we grow when we come out of surgery.
When I say grow-my meaning is we become the person that was inside us the whole time the one that was fighting to get out the one that was lost with the confusion and the miss firing of our brain and CSF not getting to our brain to allow us to reach the places we knew we could. There's a double edged sword there because we have to give up something also. The person we were told we were. We became use to believing all of the lables they have put on us- ADD, ADHA, By-ploy-er, loud, angry, hard to be aground, stupid, not educated, a bad speller (lol) and so many other things to be honest I don't think im any of those things I have Chiari. But deep down there was something wrong we knew we weren’t crazy right? If we could just be “normal”.
(This may not apply to ALL Chiarians and that is why I am going to state this now this is my impression of living with Chiari and watching my daughter go through it.)
After surgery I was sad no doubt about it I had lost apart of me I became use to and had no idea where to go next. And I cried and cried and 3 years later still cry I have lost so much and gained so much more. I am who I am, we are who we are and that’s ok. We did not choose this, this is who we are. We are sick and that sucks, we hurt and that sucks, and we feel alone and that hurts. Anyone who tells you that when you come out of brain surgery you will be the same they are lying it can't happen we change and have to close the chapter of the book even if we weren't ready to. Then we grow even if we aren't ready and we change, people will say we are the same but we aren't and it is not easy. Chiari is not easy nothing about it is.
As I write this to you my daughter will have her surgery on the 30th of this month and at first I was happy I knew about it, went through it, live it, have a support group and educate people about it. It's a double edged sword, some times it helps and then it is the worse because I know what will happen I know what they will do, I know what the surgery is all about. So I sit here and think what do I want you to know when your reading this! Well the first thing is grow please push the negativity away and grow. The second would be your not alone, the mother that hurts, the father that can't fix it, the friend that feels useless the loved one that is angry because we are sick your not alone because we feel all that too and all we want is to be loved and wanted around. The third thing I want all of you wonderful people to know is your loved, your wanted, your hurt is real and we want to hear it and we want to support you. Even if we have to let go and grow all we want is to be supported because the secret is we are all scared.
One person can send love to another and the love will grow- too 1000 people. Send your love
This is my way of expressing how to live with Chiari not all experience this I am not a medical perfection I’m just a human with Chiari that wants to send my love and support always.
Heather-founder of Zipperheads for Chiari
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