Mitt Romney, A Stroke Patient, and Facebook, aka The Good, The Bad, and The Ugly (Not Necessarily in That Order)

"What's this mean?" I asked my friend. "I don't get it." It was a cartoon.

First frame: One dog asks another dog, "Do you think Romney will win the election?"
Second frame: "Nah," the second dog says.
Third frame: "Why not?" asks the first dog.
Fourth frame: "Where have you been!?! He hates dogs! That's why!"

As the story goes, in 1983, Seamus, the Romneys' family dog, was transported on the roof of the family's car, windguard and all, to vacation in Ontario, a 12-hour trip from Massachusetts. The Governor and his wife were interviewed about that experience by Chris Wallace, Diane Sawyer, and so many others in the months before the election.

The Romneys said the story was overblown, emphasizing the trip on the roof was just as if Seamus were riding a motorcycle or on the flatbed of a truck. In August 2012, three months before the election, Devo, a band, released a single called "Don't Roof Rack Me, Bro (Seamus Unleashed)," to keep the high-profile story in the news.

And all the while, through the still-talked-about, 30-year-old Romney incident and updates on issues like KONY 2012, YOLO, Pinterest, Whitney Houston, and more, I missed it, because for close to a year, I was writing my book, "The Tales of a Stroke Patient," intently pouring over the laptop like the book was a mission to end all missions. After the book was published on September 26, 2012, I tried to find readers to buy my book. I don't know yet how many books were sold. A handful? Just shy of the Best Sellers List? Really, I have no clue, but most likely somewhere in between handful and humungous.

Writing a book and typing with one hand is no small feat, but concentrating on my disability, how it took me twice as long to type, feeling sorry for myself, crying in my soup, had to stop, and it did. Originally, the book started out as a blog to give stroke patients fond, but more not-so-fond, memories of their respective stays in rehabilitation hospitals and nursing homes all across the globe. Around the 10th post, I decided to turn the blog into a book.

The world seems small now, with people writing to me for copies from all corners of the globe--literally, except Antarctica. But I can't blame those Antarcticans. Maybe when global warning hikes the temperature a little bit higher, the Antarcticans will come, when their fog-filled, collective breath isn't hampering them from writing me an email.

I wrote to publishing houses for about six months, telling them why a biography about strokes was so important. I told them, coming right out of the World Health Organization's literature, "15 million people suffer stroke worldwide each year. Of these, 5 million die and another 5 million are permanently disabled. High blood pressure contributes to more than 12.7 million strokes worldwide. Europe averages approximately 650,000 stroke deaths each year." Still, no one was interested.

Then I heard about self-publishing. So I went to the "do-it-yourself" houses. That's how I found Xlibris, one of the originators of print-on-demand (POD). POD means they print the books as they're requested, helping Xlibris from storing books that can't be sold and keeping customers, and in turn authors, happy as their book orders come right away. It's a win-win situation, all the way around.

The one requirement I wanted the most was total control over my work. Fortunately, that requirement was familiar to Xlibris because, as they say, "we help hundreds of authors every month publish their work in the manner and form that they envision."

Xlibris started sending email attachments around July 2012. The attachments were arranged in the order expected, telling me the "next steps" I needed to take for the final step--publishing. I designed the cover, telling them that I wanted a pink brain and, on it, black letters that spelled out the title of

my book and my name on the front and spine. I chose the color, format, and style.

I designed the back cover, relating all the reactions from my blog and advance copies of the book. The people were all grateful that I was forthright with them. Many told me about the service I was providing, to educate people about strokes everywhere around the world.

I sent them three successive drafts of the entire book. When I was satisfied there were no more errors, at least none that I noticed, I sent in the final paperwork saying, "Yahoo. It's finished" (to myself), and then I was done. My package came with extra books, a press release, and a host of resellers that would advertise my book like Amazon and Barnes & Noble. 

Then I got the quirky idea to advertise the book on Facebook. If 15 million get strokes every year, it stands to reason that some stroke survivors would be on FB. So often, I put out a post on my book. That's when the ugly--and in my opinion, jealous--emails and just-plain-nasty posts arrived. There were 12 altogether and they hit me like the proverbial ton of bricks. They posts weren't threatening; they were just unnecessary and annoying, and the comments all used the second person "you" which adds a hint of animosity. Here is what some of them said (and my reactions in parentheses):

You obviously don't know how to market a book. I have an agent that does all that for me. (Big deal. You're rich enough to afford an agent).

You wanna sell your book? Give me three reasons to buy it. (I'll give you a lot of reasons, starting with "you might learn something").

You didn't even greet me before you posted on my personal page. (Oops. Where are my manners?)

 You can't advertise on Facebook. (Actually, you can).

(And this was the last one:) If you wanted to make a real difference, you would try to make an audio version for those people who can't f**king read because of their damned stroke. (Language, language).

Most--maybe all--of those 12 people reported me to Facebook as sending spam and I received a 7, then a 14, then a 30-day suspension from either acquiring new "friends" or from messaging new people. Facebook said that I can only write to people I know. What if you want to make new friends? Shame on you, Facebook and Mark Zukerberg, its founder.

I couldn't do anything about all the naysayers, but to make a audio version that works with the I-pad, I converted the book from a manuscript document into an Adobe .pdf version (remember, I had technical skills once?) and it worked. I had a "friend" whose name was Nicole test it. The I-pad now delivers an audio version of "The Tales of a Stroke Patient." So now how do you feel, saying I don't help the ones with poor vision from brain impairment. I think his name was Pat from Ireland. Or maybe Bob from Africa. No. That's not right.

Anyway, people can be petty, and you sometimes see that phenomenon in Facebook--and everywhere else, for that matter. Hey, Mitt Romney is a member of Facebook. He must get a slew of unnecessary and annoying posts, more than I do. From dog lovers, for example. Maybe I'll learn how he handles it.

Something REALLY New to Help Stroke Survivors

I'm just taking a guess. I never met him. But Robert Thornton is probably one of those guys that you meet every so often because, as it turns out, he is a humanitarian. Sharon, his girlfriend, had a stroke on April 4, 2012, and as a result of the stroke, developed, among other things, a subluxed shoulder, common in stroke survivors. She had severe pain that was caused by the misaligned shoulder. First, a little history on subluxation so you can understand what Robert did.

Taking all the medical mumbo-jumbo out of the picture, the shoulder joint, a ball and socket formation, is the most flexible of any joint in the body. It also makes the shoulder the most unstable joint. In a subluxed shoulder, popular wisdom, in plain English, explains that the shoulder joint's failure of the socket to completely cover the ball of the upper arm bone makes the shoulder reliant on soft tissue instead to hold it in position. When the upper arm comes substantially out of the shoulder socket, it allows for less mobility, and subluxation results.

With a shoulder subluxing, the patients sometimes feel a popping sound as the ball joint moves out of the socket then returns. Some patients feel their arms losing feeling. Others get a sense if they raise their shoulders too high, the shoulder will pop out permanently which, of course, it sometimes does. When a shoulder subluxes, pain occurs and is positioned primarily in the shoulder joint. The American Academy of Orthopaedic Surgeons (AAOS) says most of shoulder subluxations happen because the shoulder slips forward, starting the patient's pattern of avoiding motions which give pain to the patient, thus resulting in weakness for those motions the patient can't--or won't--do anymore.  The AAOS says the shoulder will often sense numbness and tingling, traveling down the arm.

Visual signs are often these:
     * Swelling or bruising over the spot where the injury occurred
     * Less rounding of the subluxed shoulder as compared to a healthy shoulder
     * Dimpling below the bony protrusion at the top of the shoulder

Even if you can't interpret the visual signs that accompanies subluxation as needing HELP, there is the pain, and that's where Robert comes into the picture. This excerpt comes from Robert, and I offer it to you, coming right from the man's heart:

"The ER ...man what a scary place...not much compassion there. They deal with death every day and it shows they do what they can, but honestly, how would you like the job of trying to calm down family members of a patient on the brink of death...that's gotta be hard on your heart and soul. Sharon was in ER for a week. The doctors told us not to expect her to recover and said if she did recover at all, she would have total loss of her left side. Ok, with that news shocking the family, what was I supposed to do? This is my soul mate and I knew if I gave up, she would, too. There was no way I was going to let that happen. So first things first. I taught her to eat so they wouldn't put a feeding tube in her (tough fight there they kept ordering a tube and I kept telling them to wait. I knew she would eat on her own given the chance). Ok, now we're off to recovery center.

"In-patient rehab....These people do great things and they’re very positive and encouraging (what a refreshing change). The therapy she received helped her leg, her speech,her eating and swallowing, just about everything but her arm and hand...this is what I would like to talk about. I have been by her side since her stroke every therapy she got. I repeated it in her hospital room and her recovery was amazing, but they couldn't really do anything for her arm (mainly due to the pain). I asked them about a sling to hold her arm and shoulder joint in place (they said the pain and swelling was from pinched nerves in the shoulder). They said that she just had to work through the pain because there was no sling that really worked for the sublux shoulder. My answer to that: bull****.

"I watched her therapist hold her arm in place and her pain went away. I started searching for a sling ...and sadly they were right. Every sling I found caused more harm than good...and they wouldn't let me put any on her. (They did try the givemore sling, but it just didn't work. Every time she bent her arm, her shoulder fell down). Well, I didn't stop there.

"When she got home, she had in-home care and I started making different slings while her therapist kept telling me what was wrong with each sling (I made 10 kinds). Finally, they started liking where I was going with number 11. When I finished it, her therapist loved it. Her pain level dropped to where she no longer takes pain meds. The recovery of her arm jumped 80% in two weeks. Now, all of her doctors and the therapist require her to wear the sling I made.

"All of her doctors and therapists kept telling me to patent the sling and get it out to the public because there were so many people out there that needed one. So I applied for a patent and put together a workshop to make them.

"Over the years, many people have tried to make an arm support for patients with shoulder problems. For a sling to meet the needs of the patient, it has to conform to criteria considerations such as subluxation reduction, easily worn/put on, ability to wear under clothing comfortably, weight distribution, freedom of movement of both upper and lower parts of the arm while keeping the shoulder in place. Our sling meets all these requirements.

"My sling starts with a comfortable arm support. I start with an elastic arm band with non-elastic cloth ends with elastic hook and loop fastening system for arm size and comfort . This is placed over the bicep of each arm. Each arm support has a strap permanently mounted on the top front and one strap grommet and one quick-release buckle mounted to the top rear.

"The straps are made of semi-elastic material. The top 2 straps start in front of the shoulder and go over the shoulder, crossing each other in the top middle of the back, and the strap from the top front of each arm support connects to the opposite arm support at a point at the top of the arm pit in the back at the buckle so you can adjust the upward pull on the injured shoulder. The third strap runs across the back from arm pit to arm pit with a hook and loop adjustment for lateral support of the shoulder joint."

If you, or somebody you know, has a subluxed shoulder, go to this site:

http://www.subluxsling.org/

Robert, who communicates through the therapist, says it might help me restore my arm somewhat. My sling arrived a few days ago and it's already working!