The voice of the heart: An autism science fiction story by Oné Pagán. Find out more at our latest guest post!



The voice of the heart - O R Pagan

The voice of the heart – O R Pagan

As many of you know we are currently running a series of blog posts on Autism and Parenting. While not formally part of this series we are delighted to share this guest post from O R Pagan on the book he wrote a short story from the perspective of a father of a young man with autism.

Oné Pagán writes “People wear many “hats” during their lifetimes. The main hats that I wear in my life right now are husband, father, scientist, and professor. My role in life as a father is an important factor that inspired me to write this story. Autism is another factor. I suspect that I do not have to tell you what autism is. At any rate, there is more than enough information available so I will not talk to you about it.

Rather, in this short story I am trying to express my feelings as the father of a young man with autism and how far I would go to make sure that he is taken care of when I am not around.

Like any parent, I want to see my children happy, with lives of their own. Sadly, when you have a child with a disability, this dream of independence is oftentimes not an option. A virtually universal worry of any parent of such a child is what is going to happen when we are no longer able to take care of them. What would be of my child? Will others treat him well? Will he be safe and respected? Quite frankly, these questions terrify me and oftentimes keep me awake at night.
The main character in this story lives in a point in time when he has the means and the technology to make sure that his child is protected throughout his whole life. A dad can dream, right?

I, for one, would do what my protagonist did in a split second.

Would you? How far would you go to take care of your precious child?”

You can buy the story on Amazon here.

You can check out Oné Pagán’s blog here for more background on his life and scientific work at the, rather splendidly named, Bald Scientist Blog.


Chronic Fatigue Syndrome and Fibromyalgia Blog: Check out our guest post from Bea Scherfel where she tells about her diagnosis and her Fibro blog


Fibromyalgia

Fibromyalgia

Welcome to the latest in our series of guest blogs.  Today Bea Scherfel introduces us to her blog about her diagnosis of Chronic Fatigue Syndrome and Fibromyalgia.  Please do check out her blog at  http://beascherfel.blogspot.com.

If you have a blog you would like us to promote please get in touch by emailing us at patienttalkblog@gmail.com

“I am 34 Years Old.  I suffered with a lot of “Symptoms” for years.  About two years ago, I was able to finally get a diagnosis of “Chronic Fatigue Syndrome (CFS)”.  I was on different medicines for Migraines, Depression, Anxiety, Energy….Test result after test result came back “Negative” and, in January 2013 I was finally diagnosed with “Fibromyalgia” as well.  I don’t say “Finally” because these illnesses are fun to have…or because we love the symptoms…”Finally” is said out of relief of knowing “There Is Something Wrong”…so many years of seeing doctor after doctor and hearing doctor after doctor tell you “You’re lazy…You’re fat…You’re not a baby…”  Yes, I had doctors say each and every one of those to me.  So, yes, it was “Finally Nice to Have a Diagnosis and Know That I WASN’T JUST Lazy or Fat or Think I Was a Baby”…The pain, fatigue, lack of coordination, not having hands, feet, legs, and arms do what you want them to, memory problems, and the mental affect that come with these “Chronic Illnesses”, you could never understand until you go through them.  While I have finally been able to find relief, I still have bad days.  I recently started a blog which has helped me a lot “Mentally”…I may write on articles I’ve read, my own experiences, the conditions themselves, or just how I’m feeling at the moment.  I am open to Support, Comments, & Suggestions…       http://beascherfel.blogspot.com