Our Vision
Like most of us, when my symptoms started, I felt very alone. I was blessed to have family and friends that helped me through and cheered me on, but there was a part of the fight that only those directly going through it can understand. At that time, online support groups were far from what they are now. The support groups have definitely improved, but there is still so much more that we need. We need knowledge of the studies that are already out there! We need hope for the future! We need training in self-advocacy! We need help in trying to get our bodies and minds as healthy as we possibly can, because like it or not, things can get much worse than they already are. It was from our desire to help meet those needs, that the Chiari Bridges vision began!
Empowering With Knowledge!
Chiari Bridges aims to challenge everything we have been taught about Chiari and its comorbid conditions, and write about them in a way that makes them easier to understand. Although, because we know how hard it can be to get our doctors to listen to us, we will do everything we can to supply the studies behind the facts that we write about (that is why our citations are in red, so they are not overlooked). Knowledge is power! Once we as a community have a better understanding of all that is likely to be going on in our bodies, we can arm ourselves with the studies and take them to our doctors and show them the standard of professional knowledge that we expect! The bar has to be raised, for our radiologists and doctors alike, and they are not going to raise the bar for themselves. We have to inspire them to do that and we are going to raise the roof until they do!
Raising Our Bar!
One of the biggest problems we see amongst Chiarians is that our broken bodies have degraded our spirits and our
Encouraging Hopes and Dreams!
When it comes to conditions such as ours, the first things to come under attack is our hopes and dreams for the future. Even when we start out being hopeful (often because our doctors understate the significance of what has happened to our bodies), by the time we are decompressed and we find that we are still symptomatic, those hopes and dreams quickly diminish. I have been quoted as saying, “If Chiari has stolen your dreams, dream again!” I still believe that and have been in a constant state of having to practice it. We may not be what we originally wanted to
Helping Chiarians Thrive!
While I cannot go into much detail on this topic right now, we do have plans in the works to help encourage Chiarians to gain back a sense of control and live out their passions. Some have already started, as we aim to encourage help with self-advocacy, health and fitness, political lobbying awareness, and the like. But we also plan on encouraging Chiarians to start those businesses that have been on their hearts for so long (not multi-level marketing ploys either, but authentic, heart-inspired, creative businesses), and helping get the word out that it is Chiari owned. We as a community can accomplish so much more, but we need to work together to do it, and start applauding one another instead of tearing one another down! We all need a new chapter in our lives, where we overcome and succeed in the things planted in our hearts!
Passion and Motivation to Create Change in Our Community!
When we first embarked on building this bridge, I realized that my vision was much bigger than my ability to do it alone. Therefore, I sought out certain people within the community that were passionate about specific aspects that can help our community as a whole. Some loved the idea and still serve on the Chiari Bridges team. Some are on the team and just starting to give birth to all that is in their hearts to accomplish. (I absolutely love fresh ideas and fanning the flame until they happen!) Not everyone loved the idea though. Some saw it as a threat to their own projects. They mocked me and one called me “&*%@ing crazy” (she had no idea how right she was). Instead of taking us up on the offer, she made every attempt to try to stop us, and she and her friends have been reporting every image that we use and claiming it as their images. (Good luck with that!) If wanting to create change makes me crazy, I will gladly wear the crown! Let them talk and let’s do this anyway! While they are busy gossiping, we see an increase in Chiarians losing their battles every year. Last year, two of my good friends ended their fight. That’s two too many! We have no desire to compete with anyone or any other non-profits, especially the ones that serve to try and benefit (and not exploit) our community (that childishness has only served to hurt our community). We actually want to cheer on those organizations, individuals and groups in what they are doing and do all we can to help generate support in their efforts. There really is enough need in our community for them to do what is in their hearts to do and still be active and true to what is in our hearts to do. If you have passion and motivation, and just need an outlet or help doing it, tell us about it. It takes a village working together to bring about change!
Oh, and by the way, our vision for change is global! Our bar is not low. We aim to change the world and want to connect with those who desire the same!
Michelle Cole
President, Chiari Bridges, Inc.