I am very excited to say that Ben’s Friends (www.bensfriends.org) listed “Broken and Beautiful” on their website as a terrific blog for Chiari Malformation. I feel very blessed that a website such as Ben’s Friends would consider my blog worthy enough to link to their website. They are a wonderful site for people with rare diseases, full of resources and support.
As for me lately, I’m hanging in there, as I wrote in my previous posts things have been difficult so I’ve just been trying to do my best getting through each day. I’ve been focusing on the things I can do such as working on the Neuro Film Festival from Neurology Now magazine and trying to get all of the releases for the minors in the video. I can’t wait to share the video I created, it is no winner but that was not my intention in making it. My hope was to give light to what life is like as a Chiarian and show some true Chiari fighters while I’m at it. I hope that my video brings attention to the importance of funding for Chiari research and why we can’t keep living with so little answers. I’m so thankful for the people who helped make the video what it is and I can’t wait to post it and give you all the link to view. I looked through a lot of past video submission and although I can’t say I viewed ALL of them I certainly viewed a lot and I didn’t see one for Chiari Malformation so I am very excited to be able to post one up for us zipperhead-chiari fighters. I just will feel much better once I get all of the releases in from the parents so I don’t have to worry about any technicalities.
I’m also working on a special project for a Chiari warrior out there, this particular warrior has hit a tough spot in their recovery, I know all too well what that is like. I think we all hit it at that same time, when you realize just how long this recovery is. This warrior is not too far out from surgery, and might I add this is only this warriors first surgery (and praying the last). So together Momma warrior and I are putting together a video to share of this warriors journey and remind the little fighter how strong he is and that he will get there. My heart is connected to this family and I’m happy to do this for this little warrior, I know how much he will love this and use it to raise awareness and see the strength he possesses within himself. I can see him doing great things in the Chiari community!
I myself am just trying to just get through the days it seems. Yesterday was my Zipperversary from my second surgery! January 16th makes it 5 years. I wish I could rewind but I am trying not to let myself do that anymore. On another note, I don’t want to speak too soon, until I know for sure I am just keep my fingers crossed and saying a prayer one day hopefully I can explain but I might have found a tiny sliver of hope. I’m scared to become to optimistic because I have been let down so many times and I’m scared what I will do if this is just another let down. I ask myself if that is the case what am I supposed to do next?
My life has changed so much so quickly. In the past couple of month my gag reflex has worsened to the point sticking anything in my mouth makes me throw up, I am having trouble eating and keeping food down and in 3 month (give or take) I have lost close to 30 pounds. Sometimes I am so weak and tired and in pain I can sleep for days, last week for example I remember falling asleep on a Sunday and waking up on Tuesday.
I’m just tired and it’s easy to be positive for people in my group that I started on Facebook where they share their journeys with us and we talk to each other because they inspire me beyond words or even to talk to friends.
There is this one lady in particular I talk to on a regular basis, she has become my rock, you could even call her my hero for what she has helped me get through lately, we have very similar symptoms and she has really been there for me in ways I could never thank her enough for. She is someone I can talk to about anything and half the time it takes both of us to have a conversation due to our forgetfulness or the brain fog. No matter how much pain she is in she is always willing to hear me out, to listen or to comfort my tears from a far. I met her by chance at a support group meeting and am blessed to able to call her a friend, and her funny and silly husband too. My family loves them, especially my sister and its connections like these that I would have never made and I can’t imagine my life without my Chiari family.
Beside my own family, they keep me going, they inspire me and remind me what true strength is. Every day I think to myself how can I help them, what could I do to bring attention to Chiari patients and their families, who could I write, what could I do to change this for us. Besides praying, maybe one day the answer will come… one day we will be heard.
I refuse to ask why anymore because I do believe this is my path, for 24 years it’s all been building up to this. I don’t believe God gave it to me because he knew I was strong enough to handle it because that is certainly not the case here but the pain and the illness has changed me, it’s changed my outlook, made my view on things different, look at life and people in a different way. I don’t need to know why anymore, I am past that but I’m ready to give what I’ve got left in me to make a difference, even if it’s small, little things. I never had dreams of changing the world but when I was little I always hoped to make a difference and I said that it didn’t matter if it was just in one person’s life, as long as I made a difference in someone’s life then my life counted for something.
My illness has taught me to try harder, live better, love more, and do for others… I know with those goals in small ways I can make a difference and when I’m gone my life will have counted for something, so now it’s clear, it’s taken a long while but I see now this has been my path all along. It has led me to what I was meant to do all along and one day I will find my way to that!
If you or someone you know has Chiari Malformation please feel free to visit my group on Facebook “Chiarians Raising Their Voices To Make People Aware” by visiting https://www.facebook.com/groups/shareyourchiaristory/ or come visit Team Britt page at www.facebook.com/teambritt4