Oh my gosh, oh my gosh, oh my gosh! I can’t WAIT to write this morning and share good news with you all!!! Miracles folks, they do happen every day. Hold the hope. Keep the vision!
Did I tell you I finally got an appointment with Duke University? Well, I’m pretty excited about it. But that’s not even the best part. When I scheduled my appointment they suggested I look into a FB group for CSF leakers. Now, I’m not so into groups and committees. I was resistant, because I’m really not into being part of a group that sits around and just talks about how bad everything is, and my state of mind is delicate. I need hope, good news. BUT I have so many unanswered questions about my condition and I have felt so ALONE in it all. Wondering, is this normal? Am I crazy? Does everyone have these symptoms? It’s one thing to have these feelings for a week or two, it’s another to have them for months.
Be still my heart. This group of lovely people is SO my Tribe. Who knew? Beautiful, beautiful people, helping each other navigate the crazy, misunderstood, wild ride that has to do with spinal fluid pressure. It’s hilarious. And lovely. Tips and tricks and nutrition advice and pain management, and … understanding. Speaking with someone that understands completely what you are going through. I’m overwhelmed with gratitude. And Joy. And Hope. This is the most supportive, loving, positive, and hopeful group.
It’s amazing how much it eases my soul, my anxiety levels, to hear other people experience what I do. That I’m not alone. I didn’t realize how much I needed them until I found them. And just like that, I feel Unstoppable. I have new determination. New friends. New goals.
Maybe it’s healing to know, that if we cannot control our health, our bodies, our minds, we can at least help others. We can lend a hand, a kind word and work together, and THAT gives us a sense of purpose.
My life has been rearranged and scrambled, somewhat like a rubix cube. I have been struggling for months to put it back together, perhaps I should just enjoy the new configuration and learn what it has to offer. Maybe the point isn’t to go back to once was, but to create something completely new. Scary. Like jumping out of a plane. (which I did only once). Look at that young face, trying to be brave.
It was a tiny, rickety, old and scary plane flown by a couple of young adrenaline junkies. I had to crawl out onto the wing mid air and let go. Did you hear me? I had to crawl out of the door of a plane (while high in the air) and move my hands and feet along the wing until I got out to the end, and then let go. Imagine that a moment.
Letting go was the hard part. I remember sitting there for what seemed like hours, telling my brain, to tell my arm, to tell my hand, to tell my fingers, to just let go. But they would not. If my younger brother (himself an adrenaline junky) hadn’t been in the plane with me I would have certainly backed out, but pride wouldn’t allow it, so at last I jumped. And look at that face. Elation.
This feels kinda like that. Telling my brain, to tell my heart, to trust and let go. Who knows where I’ll land?
Create your Sunshine Life, wherever you are with whatever life gives you. If you are alone, find your Tribe. There is magic out there, I promise. You just have to find it.