You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. ˜ Eleanor Roosevelt
I have been afraid.
Afraid of what you are wondering, especially if you are here reading this blog post on our Walk Your A.S. Off website and you don’t have a form of spondylitis. So let me try to explain.
I used to love to push myself physically, in fact, I did some crazy things trying to prove to myself that I could physically do the things others were doing. It was an attempt to not listen to that inner voice telling me that something was not quite right when it came to my physical abilities. So, I rock climbed at Joshua Tree, I jumped off 30 ft cliffs into the sea in Corfu, I took double diamond trails through the trees at Snowbird, and I climbed a 14,000 ft peak in Colorado. You get the drift of it. All of it was extremely challenging and all of it took me out of my comfort zone. And ALL of it was worth it.
Then I started to get very sick.
I was experiencing physical pain that was so bizarre, horrific, and mind numbing that I really couldn’t believe it was happening and I finally got to a point where I realized it wasn’t going to go away. And I suffered, and I suffered, and I suffered for years looking for answers to what was happening and why. (My mom wrote this about watching my years of struggle) Finally I received a diagnosis, got on treatment, and finally I started feeling better. Many with a form of spondylitis are not as fortunate as I have been. I know this and it is part of why I push & pull & drag people into hearing about these diseases. So that one day we will find a cure so that people do not suffer from a life with this horrible disease.
When you lose 5 – 10 years looking for a diagnosis it forever changes you. When you spend a lifetime with a fused spine – it changes everything. The years become a blur of just barely hanging on and getting through the pain – that makes you very different. And for some like me, when you finally start coming out of the bad place you’ve been in, you are still changed. A fear so deep and so stuck in your gut takes hold of getting on with life or getting on with a life with enough of who you are, or were.
What am I afraid of?
Going back to that place where the disease rages out of control. I will do everything in my power to never be in that place again. Part of the things I have known I need to change is my level of physical activity. I’ve been working on it along with adjusting my diet, my stressors, my circle. I hope with everything in me that our walk inspires you to be more active. If you are like me, you will need to change slowly and do just a little more each week. But it is imperative we make our bodies as strong as we can and walking is a way we can do that with low impact on our joints.
Wherever you are in your process of getting some of your old self back I am so thrilled you are with us here. If you are here because you love someone who has spondylitis – I am THRILLED you are here with us! Look for inspiration and examples of people who are fighting back and taking their power back over AS. They are everywhere! I’ll be introducing many of these people here on our blog. There are people just like you, at exactly the spot you are in. We are a group of people ranging from participants who are in a wheelchair to professional athletes. Each and every one of us will participate at their level and each and every contributor gets us to our goal. There is no one effort better than another. You all inspire me and I hope to know you as we go along with our walk this year.
I’d like to tell you about my inspiration for my effort in this years walk – Helgi Olafson.
Have you met Helgi?
If so you know he is a force, an endurance athlete, and he has Ankylosing Spondylitis. As I’ve come to know him a little bit over the last year I have become extremely inspired. Helgi & many of his team are taking the Million Step Challenge. I am going to as well this year and Helgi is my inspiration to make it! He told me just the other day I could do it & I believe him and I’m beginning to believe in me.
Would you like to join us?
It is a huge undertaking for someone like me. That is code for out of practice & out of shape and afraid. OH – and someone who has Ankylosing Spondylitis. But, I know if I set my mind and my body to it that I am up to the task. I am going to be a little more of that 20 something girl who flung herself off a cliff & into the sea in a pink bikini!
Take steps today to ensure better tomorrows!
Team captain of The Blue Apples