My story 1

I have always wanted to tell my story the problem is that it keeps going. I assume that is a good thing. I always have thought that to tell a story you need to start from the beginning but I'm going to start from the “now” because that is how I live my life. I use to live in the past and some times find myself looking back but I'm not suck there or in the future, I'm in the here and now as much as I can because I don't know what will happen next. My name is Heather and I have Chiari it is a brain disease I got from my father being exposed to Agent Orange while he was fighting in the Vietnam war. Both of my children have Chiari also and they have different fathers so I know it comes from me. 

I was diagnosed in 2009 and had surgery 7 months later but I lived with symptoms my whole life. I thought I just did not fit into this world, I was not good enough or smart enough. Maybe I was not as pretty or skinny, maybe I needed to try harder and change myself (that I could never do) or maybe I was just not meant to be loved. After my surgery I have changed a lot, I still wanted the love and could not understand what I was doing wrong because the sicker I got the more people I lost. And I tried, I gave as much as I could, I let people run over me, use me, take advantage of me and I was ok with it because I was making them happy but I was not happy. Until I just stopped and let it be what it was. It's funny how we see our self’s and how others see us, it is very different. I spent many years angry on the wrong that was done to me until first I excepted the wrong I had done and then I then I just slowly let go- very slowly but I started letting go.

 I had the surgery to late and Chiari has effected parts of my body and I am what I am but I am here. I have seizures and so does my oldest child, I have memory issues, I have a brain aneurism and with my great luck it is where they can not operate on. I also have other health issues that I have excepted. I lost my daughters father before she was born but gained a best friend a amazing husband. All of this can still be in the now because it makes me who I am, it reminds me to be more loving and give more human compassion because you never know what that person has gone through or what road they are going down in life. For 2 years I looked at myself and saw a sick person and I wanted Heather back not a Chiarian until I realized they are the same as long as the sickness dose not come first. My whole life I have wanted to be a singer and I can't be the one on a stage but I can sing in my backyard or in the house or where ever I am. 

When our 9 year old got diagnosed with Chiari he was so upset he throw up. The next day I sat him down and asked if he felt different? He said no. I asked if he played different, he said no. I asked if he see's him self as someone else and and he said no and I said well that's the only thing that has changed is education on how you where made and what we need to do to help you be the healthiest and happiest person because you were born with Chiari and that dose not mean you have to change who you are it makes you stronger. My beautiful little man said “oh that's all?” and I said mostly yes. We talked about the surgery but all in all that's it.

 Chiari has opened my life up I have chosen to except the positive and move forward and always try very hard to enjoy the “now”. This is not a fix or a cure but it can help enjoy life. I live daily with pain and my life is not roses. I choose not to hand out a bunch of BS and be me. I have lost many “friends and loved ones” because of Chiari and it has hurt dearly. The thing that hurts the most is my children and husband have lost and it is unfair. For the first time in my life I can sit with my self and be happy. I enjoy the little things that are given to us.

Living with an illness is hard we don't need to make it harder on our selves. Every night I send love and light to the world because I love you all and because I care. Even when the sky falls on you, you are still not alone and the love is still there to support you as it falls. That is the beauty of human compassion you have it because you want to give it.

I love you all, I support you with love. This is my story I am sharing. Zipperheads for Chiari is not a doctor site and we do not have doctors on site. If you have a medical issue please call you doctor or 911.

With all our LOVE 

Heather

founder of Zipperheads for Chiari