A Special Book and Author

Many thanks to a new neighbor / court reporter who took a workshop on transcription for the hearing impaired and then loaned me a book, highly recommended, on which the workshop was designed and the author was the presenter.  The author describes her personal journey from hearing to profound deafness and back into the world of hearing as a result of a Cochlear Implant (CI).  Author Arlene Romoff calls it a "modern day miracle" in her second book, Listening Closely.  This is actually the second part of her journey, documenting the demise of her first CI and a reimplantation as well as her progression to becoming a binaural hearing person once again.  I have been moved to order her first book, Hear Again.

Ironically, the hearing aid dealer we dealt with in RI, when we were in the throes of FOUR hearing-impaired ears, called his business "Hear Again!"  While visits there were always traumatic for me, he and his wife and staff ran the most welcoming service, always made me laugh, even while dealing with difficult life and life term  events.  I will always be grateful to the late Reno Bellafiore and his family.

And it's important to realize that while we were struggling to deal with the realities of our children's hearing loss in the 70s, others were in the process of developing the so-called "bionic ear."  The results of those scientists, researchers, and medical personnel are that CIs have become more and more perfected and available to restore "hearing" to deaf and hearing-impaired individuals across the world.  I had always hoped there would be something in my lifetime - and certainly within my daughters' lifetime - that would make it possible for them to "hear!"

It's important to realize that CIs do NOT correct hearing, not in the way that eyeglasses can correct vision (sometimes), but that one does actually have to learn to hear again.  Arlene Romoff, in her well-written and informative books, describes sensitively and in great detail the process by which one relearns to hear and communicate with the hearing world.  The social/emotional components of the transition are handled equally as well.  It is a fascinating read for anyone considering a CI, or for those, like myself, who travel the journey along with their afflicted offspring.

As one of my daughters has committed to CI implantation next June, I am most interested in reading Arlene's story.  I posted about her books on FB yesterday and then searched for her within that venue.  I found that she has a personal profile but not a business page.  I sent her a message along with a friend request, which she immediately accepted, visited my Scarf It Up FB page (and "liked" it).  As we began a dialog via FB messages, I informed her of my interest in her story and told her of my daughters' Usher Syndrome and that they manage a FB Community called, Usher Me In.  She immediately "liked" that page too, and I hope she'll be a follower and contributor to that effort.  Thank you, Arlene!

Also somewhat ironically, as I was driving home from work at my co-op gallery, I heard on the radio a report about a bionic eye that has been developed in Australia, for use in RP patients.  Somehow I knew 40 years ago when we first started this journey that there would be assistance for the likes of my daughters, and hopefully I will personally see and hear and experience all this for my daughters!

The Frustration Continues!

Life can sometimes feel like a living nightmare soap opera!  Just when you think things are status quo - after accepting what is over a period of time - a new kick comes into play.  In the last week, there have been TWO such knock-downs, one for each of our daughters:

• One learned that her hearing has declined significantly in one ear.  Consideration of cochlear implant has been advised, which she is very reluctant to consider.
• The other learned that cataracts are the cause of her diminished vision.  Surgery in the case of RP patients is riskier than the norm, and the opinions on their treatment are varied and horribly confusing.

Both have jobs they can't afford to lose and parents who can never stop worrying, particularly as WE get older and realize that we can't take care of their needs forever!  I guess this is a constant for most parents.  We've spent the last week researching the best retina specialists, cataract specialists, and comparing the two major brands of cochlear implants.  Confusing and exhausting!

Any personal recommendations will always be appreciated!