I remember the day that my friend, Marla, told me that she had been diagnosed with an acoustic neuroma. It was at a monthly breakfast meeting of women that we both attend. This group has been gathering once a month for the past 13 years. typically sometime during the breakfast, we take time for anyone with an announcement about an upcoming performance (most of us work in the arts field), exhibit, or event in which we think the rest of the group might be interested. This time Marla revealed that she was going to have surgery to remove a 2.8 centimeter tumor–about the size of a walnut– that doctors had found.
It was a benign tumor, 2.8 millimeters in size, Marla explained. As with any surgery, hers would involve some risks. Those risks included complete hearing loss in the ear by which the tumor was located, possible loss of sight in one eye and possible partial facial paralysis. We all kind of stared at her, perhaps a little shocked by the news. Then the questions came. When and how did she learn about it? When was the surgery to be? Who was going to perform the procedure? Had she checked for a second opinion? And so forth.
In retrospect, I am sure all of our concerned, well-meaning questions seemed like a bombardment to Marla. But she had done her research. Once she received the diagnosis, she too had a flood of questions to which she sought many of the answers on-line.
She had weighed the consequences and the treatment options and decided, based on her specialist’s opinion and her own, to have the surgery. For Marla, coming to this conclusion was no small matter, as I’m sure it must be for others in the same position. Besides her job as the development and membership person for Bellingham’s independent film theatre, the Pickford Film Center, Marla is a theatre director and actress who appears in many local productions. Facial paralysis or even a loss of hearing could impact that avocation, one that she loves, greatly. Not to mention her daily life.
She had given her tumor a name, “Norman,” perhaps because it was easier to live with it that way. She had interviewed several surgeons and settled on one with whom she felt both comfortable and confident. The research, in her case, paid off. She did experience hearing loss in the one ear, but no permanent paralysis or loss of sight. And the incision site wouldn’t be visible. Perhaps best of all, she learned afterwards that she would not need radiation treatments either.
Naturally, she was relieved and thankful, as were her family and friends. She has resumed her ‘normal’ activities and life without Norman.
Just last month, Marla made another announcement to our breakfast group. She was publishing a book about her experience. She had told no one, up to this point, except for the editor and designer with whom she was working and her immediate family. As Marla explains on her book’s website:
“I kept a journal, which I have now turned into a book! Not because I am so incredibly full of myself (ahem!) but because when I was on my journey, I needed to hear a story with a happy ending while I was living my own. Thankfully, on the way, I met a few people with their own happy endings, but mostly I heard from and about people with complications and post-surgical, ongoing issues. I wanted to share a story of hope, to balance out all of the stories otherwise available on the internet.”
I was honored to photograph her for the book: “A Whole New Normal–An Acoustic Neuroma Journey”. She wanted to stage the photo session at Boulevard Park where she had spent most of the time writing the journal. That’s exactly what we did. I chose a spot down on the beach where we could work undisturbed and undistracted. I tried to create an image for her that captured the Marla I know, with a warm, friendly, genuine smile that says “I care.”Marla’s hopes her book will encourage people who have been diagnosed with the same condition to seek out the best care, to struggle through the hard decisions and to face the challenge knowing that happy outcomes do exist. All profits from the book are being donated to the Acoustic Neuroma Associations of US and Canada.
To help spread the word about her own experience and the book, she’ll be in Los Angeles, where she grew up, attending the Acoustic Neuroma Symposium August 9-11. She’ll have free copies available to newly diagnosed attendees.
You can also order a copy for yourself or someone you may know who has an acoustic neuroma on-line by clicking on this link: http://www.villagebooks.com/book/9780615852133.
Although “Norman” is no longer a part of Marla, it has become forever a part of her life.