Over the weekend, I did a blog post about a hospital stay last week. I was not trying to an alarmist or to say "woe is me." Rather, I try to use by blog to describe my stroke journey.
My blog is published in different ways. Usually, it is just in the blog sphere. That is it. The audience is limited to readers who find it on my blog. Sometimes, I put my blog on Twitter where I have two accounts: My personal account but also the Idaho Aphasia twitter account. I have sometimes posted my blog on my Facebook account. And, also, the Idaho Aphasia Facebook page.
My last blog post was about the hospital stay. In that blog posts, I wrote "I have a condition called Fibromuscular dysplasia. FMD is a progressive twisting of the blood vessels throughout the body. It causes abnormal growth within the wall of an arteryIt is rare: Fewer than 200,000 US cases per year.” It can't be cured, but treatment may help like taking blood thinners.
I ended by writing that "I want to see my son grow up. I am petrified and angry. My body is not 'mine and has a life on its own. It seems I am a bystander in my head. Just waiting."
When I posted that last Friday, I got some instant negative feedback. A friend basically said "STOP! You need to stop living in the past and reliving your strokes. Embrace the fact that you are alive and awake."
I was surprised. I deleted my Facebook and Twitter posts about this incident. I did keep the Idaho Aphasia Facebook and Twitter posts. Those are limited to people who really understand what stroke survivors go through.
I have really thought about my friend's admonitions. I am really living in the past? Is my blog selfish and self-absorbed?
When one of the trendy Facebook "things" about "what to you post most on Facebook, "Stroke" was my 1# thing. Is my self worth just "stroke?" Has my identity become "Oh...another stroke post. Move on."
Perhaps I do too much about my strokes.
Of course, I know that dissection did NOT cause a stroke. However, I had a "MRI that showed last week that recently – May of 2014 to perhaps August of 2015 – I had a right side carotid dissection."
Samuel Johnson wrote "The prospect of being hanged focuses the mind wonderfully."
In other words, I am scared. I am focused on this MRI. It will take some time for me to forget this latest scare.
So, for now, I am sorry for expressing my worry in a public way. When I quit stressing about the possibility of having another stroke, I will think about this advice.