Glenda's Book Update #8

September 2006

Hi,

Bags are packed, plants are watered, and kitty-sitter is arranged (thanks Jerry!). Tomorrow morning hubby and I are off for our first holiday in seven years! We are going on a three-night cruise down to Los Angeles, California, and then spending three nights in Anaheim - one block from Disneyland. I finally get to meet Goofy and Mickey Mouse! Life is good.

The book is nearly done. The manuscript is undergoing a thorough editing by Debbie Fierst. Nancy Cleary is designing the cover, which I'm eager to see, particularly since she designed an awesome banner for my new website. She is also guiding me through the self-publishing process as there are some pitfalls to avoid.

I also have my ISBNs - the identifying numbers on the back of books. I have pretty much decided upon the printer. My next step will be to order an actual book from printer's bookstore to check the quality and such.

My marketing makeover is also in full speed ahead. I've been working with Suzanne Falter-Barns to develop my brand - how I'll be known in the marketplace. I'll Do It Myself has emerged as my brand. Imagine that! But we are stumped on my expert line - what it is that I actually do. A question that I have been asking myself for the past eight years! Suzanne and I have brainstormed several ideas, and I welcome your feedback and ideas. I look forward to another lively round of comments on my blog.

Thank you to those who contributed to the lively discussion on my book subtitle. For those who haven't heard yet, my final decision is simply I'll Do It Myself. Read my blog to see how I came to this decision.

And, finally, Shari Horne has begun designing a new look for my blog. By this time next month, I may have a new blog, with Nancy's awesome banner, to reveal. Stay tuned!

Whew, I think that is all the news on the book front! Things are definitely moving along. I'm also trying a little different format with this newsletter. Let me know what you think.

Thanks again for your support and for believing in my dream. I truly appreciate it.

Until next time...please feel free to forward this to friends and colleagues...

Cheers,
Glenda

Book Excerpt:

As I was getting serious about writing this book, my left hand started protesting when typing. Not good for a left thumb writer! Within a few months, I went for an electromyography (EMG) to test my nerve functioning. With electrodes fastened from a computer to my wrist and arm, which the lab techie then zapped repeatedly, I felt like I was in Frankenstein's lab. I jumped higher with each subsequent shock. From my perspective, my nerve function was working quite well!

Before the actual test, the specialist asked me a series of questions on the functioning and degree of pain in my left hand. When he attempted to examine my right hand, which is either a tightly clenched fist or, opened, a dropped wrist with fingers pointing every which way, he asked if I had ever tried botox or if it had even been suggested before. He offered that botox might reduce the tightness so that perhaps functioning could be increased.

Within five minutes he had made a judgment call about my quality of life. He didn't ask if I was happy with my level of functioning; he simply assumed I should have more. I mean, I can control my scooter, hold the reins, pull up my pants and hit pretty hard with that hand. What else do I need to do with my right hand? I doubt a botox injection would enable me to cut my food or type with that hand. So, really what is the point? And, especially when the long-term effects of botox are still unknown, I'm not overly keen on becoming a human guinea pig when I've been fairly content with my hand functioning, at least up until that appointment. I began doubting myself for a while, wondering if I should be expecting more from my right hand.

I do appreciate that he was offering a potential solution, as any good doctor should, but I felt like he was suggesting a solution before confirming the problem, if, indeed, there was actually a problem to solve. I felt like he was treating the medical condition, without dealing with the person. In my mind, it seemed like he was attempting to heal the wrong hand!

Reader's Corner

I am excited to introduce a Reader's Corner where you, my readers, can ask me questions about living with a disability, how to possibly adapt something to make it accessible, writing a book, or almost anything. My plan is to include a few readers' questions with my responses in each newsletter. So, go ahead, ask, me a question! Send your questions to questions@BooksbyGlenda.com.

"Glenda, when I am talking to you or someone else whose disability inhibits their speech and I don't understand what has been said, it is often my tendency to pretend like I have understood. I know this is wrong but I feel awkward in the situation. What would you suggest I do in this situation?"
~ from your lifelong friend Karen

Good question, Karen. Speaking for myself, I would prefer to repeat myself, even a few times, than to have you pretend you understood what I said. When you are unsure what I've said, simply repeat what you have heard and ask whether that was what I've actually said. I'll then either confirm "yes, I said that" or I will deny having ever said that and repeat myself. No need to feel awkward or to apologize for not understanding. (To share a little secret with you, I don't always understand when I hear myself either! That is life with cp.)

Take a look at Say What?: Effectively Communicating with Clients with Speech Disabilities for a few more tips. Hope this helps, Karen. And thanks for asking this question.

Future editions of Reader's Corner will likely have 2 or 3 questions. I simply need to send this update now, so that I can get to bed before its time to get up to leave on the cruise! In the meantime, please send your questions to questions@BooksbyGlenda.com.