As you may know, I took a large part of the summer off from blogging here trying to reevaluate and refocus. I tried blogging in a different style somewhere else telling more stories about my kids, but that blog didn’t really take off. I’m glad I took a break, it was good in many ways, but there were many times I didn’t blog when I wished I could, and you should see the countless drafts I half wrote up and never finished.
The most significant one was sharing what really happened a few months ago. Maybe some day I’ll share the details, but the conclusion of it all was, my symptoms were so very severe I thought I might not make it through that storm. My breathing was arrested so long that I would slowly lose feeling and then hearing and just as I was beginning to lose consciousness the diaphragm spasm let go and I started gasping for air. The full body spasms and convulsions went on for so very long I didn’t know how much more my body could take, it wore me out and wore me down. Through it all however, my biggest fear was that my family would give in and call for emergency care. I wasn’t ready for that, the thought of being mistreated and assumed I was faking was too much to bear, and since we still have yet to have a working protocol in place I thought it was a real possibility. By the end though, I was in such bad shape physically I was torn between praying my family wouldn’t call, and hoping oh so hoping they wouldn’t wait too long and regret it.
I made it through, without going to the emergency room that day. But I should never have had to be afraid of calling for help.
I’ve been blogging more lately, partly because I need it for my own therapy, but also because I want to help. Writing is the one thing I can do. I was encouraged to contribute articles to The Mighty, a site I’d not heard of before a few months ago, but was impressed with their mission and their ability to reach a far greater audience than my little blog does. I spent a lot of time praying about it and wondering if this is my next step, I want to be able to help more people, not only as an encouragement but spread more awareness.
The biggest thing on my mind was to share what it’s like to struggle to get the medical care we need, what so many of us go through when our symptoms turn severe and we need help. Every time I heard another story my heart broke again and I was filled with a greater urgency to write and speak up about it. Watching others be afraid to seek emergency medical care when their symptoms were critical, and then hearing what happened when they finally did was heartbreaking.
The first story I shared with The Mighty was a version of the one I wrote about my husband a little while back. I wanted to start with something sweet and safe, but in the meantime I was pouring my heart and soul into the idea that I could and should share our story about what it’s like to be mistaken for faking. To be honest, I was terrified of putting myself out there in such a public way, but so desperately wanted to help. I wrote an endless number of drafts, had it almost done, and then let it rest for a while while I was working up the courage to share it. I finally submitted it, and in just a little over a week’s time the final details were finished and it went live.
It’s been less than 24 hours and I am already overwhelmed with the responses. I had shared it in a few support groups and could hardly keep up with the FB notifications of likes, and comments and shares… The “me too” stories have had me in tears. I knew it was a common theme among us to be mistaken for faking or drug seeking in emergency situations, that’s why I wrote it, but the stories are heartbreaking.
I know better than to begin to think what will happen next with my blogging and writing. The Mighty was so kind to work with me in sharing my story and has graciously asked me to keep submitting stories for them to share. I have ideas and hopes for future articles for them, but will see. Life often times has a way of happening differently than I envision it.
I want to thank everyone who encouraged me to not stop writing, and helped me overcome my fears of sharing the details of this story. You played a part in reaching more people than we could have otherwise, and given opportunity to encourage others to open up and share their experiences.