The Story Begins…

This is an archived post that was originally published at beyond-terminal.com

I’ve come to realize that there is something called a “platform” for those authors who are interested in getting their memoirs published.

I know all about platform shoes (love them), but I had to resort to Google to figure out what an author’s platform is.  As you may have guessed, it has to do with getting a following.

Those who know me know that the last thing I’m interested in is gaining a following.  Social media makes me feel unsettled.  I’m a reluctant facebook user and have an account because I do like people, I really do, and some of my friends live in different states, let alone different countries.  And, alas, it seems as though this facebook thing is a good way to stay in touch.  But it overwhelms me.  To deal with my overwhelm, I go directly to the page I want to see, wish my friend a happy birthday, and log out, all in a matter of a minute or less. 

As far as Instagram goes?  The only reason I have an account is because my son was interested in posting his art to a website for an art contest.  Hard to say no to that. 

Given this, it probably doesn’t surprise you that I’m reluctant to blog.  I do have a book about blogging that I purchased about a decade ago when I was contemplating how to tell my story.  Why I thought it would be easier to sit down and write a 93,500-word book, I don’t know.  Actually, I do.  It’s because I’ve preferred anonymity, especially as it relates to my story. 

It turns out that writing a book takes a long time and allows you to remain hidden for a long time.  Well, now I’ve got this hefty manuscript in my hands, and, while the idea of publishing it terrifies me, I have started to look into it because, as I’ve said, it took a long time to get these scenes on the page, and part of me feels as though I should have a bound book that serves as a visual reminder of all that hard work.  Further, and more importantly, I hope that the words I’ve wrestled to get down on the page will be impactful and help someone else who is dealing with medical challenges – or even just someone who is feeling lost, lonely, or afraid.

The challenge with being late to blogging is that all the good domain names are already taken.  I’ve tried every permeation of “The Reluctant Blogger” I could think of, all to no avail.  So, I’ve resorted to something reminiscent of my working title TERMINAL. 

I just Googled how many words an average blog entry should be.  The median length is 2,164 words.  I’m currently at 473 words.  Turns out I can get into some of what my book is about in this first entry.

I’m not going to lie – it’s much easier telling my story to a screen than telling you in person.  Whenever I attempt to talk about my illness, it seems like such a non sequitur. 

Friend:  What do you remember from junior high?

Me:  Uhm.  The time that I spent in the hospital?  Or all that rehabilitation?

Yeah, better to say, Gosh, that time is really fuzzy in my mind – or something along those lines.

Besides, when I do attempt to share my story, it’s not unusual for me to start shaking.  The trauma from that time lives in me at a cellular level.

But I’m just writing this into the empty void right now.  Not much shaking going on.  Although I might start shaking if/when I copy and paste this from a Word document to my just-created blog and press “submit.”

For those who knew me when I was younger, would you ever have guessed that I would live to be 47-years-old, happily married, and the mom to two amazing children?  That’s okay – I wouldn’t have guessed it either.

At the age of 11, I was diagnosed with Hallervorden-Spatz Disease, a terminal, neurological disease.  Never heard of it?  You’re not alone.  It’s estimated that only 1 to 3 in 1,000,000 people are diagnosed with it.   It’s an especially pernicious disease (not that any diseases are good).

Here are the symptoms that Wikipedia lists:  dystonia, dysphagia, dysarthria, rigidity, tremor, writhing movements, dementia, spasticity, weakness, seizures, toe walking, and retinitis pigmentosa.

Wait, you think.  How are you still here?  What happened?  It’s a long story.  Filled with many bumps.  I’ll do my best to tell my story (all while I continue the hunt for a literary agent).