Friday, June 13, 2014

The Man Who Was Immune to AIDS...

The New York Magazine feature article about my brother, Steve Crohn. (June 9th issue).

Tuesday, June 10, 2014

It's Not For Me to Say...

Borrowing the title of a Johnny Mathis love song, I know it's not only up to me to make a final decision on anything in my life - my career, my loves, my challenges, and my tragedies.

All the motivational books or sayings you will read say it is entirely up to you and you alone to forge your path. The rocks thrown down in your way are for you to navigate around or through and reach the other side again and again and again. Oh, phooey.

To me, reality is being patient and allowing the events and decisions that are made around you reveal opportunity for you. Such it is with my book, my health, my husband, my children, my living arrangements and my friends.

For example: The fate of my book is in the hands of several royalty publishers who await my revised manuscript. I will not make the 'yea' or 'nay' decision; they will. But it is me who will decide how to manage the results - puff, puff forward as I select a publisher or take the blow of a 'no' and choose to use a different bat, swing another way, but never give up. It's not for me to say.

Living moment to moment means allowing yourself to just be. The miracle could be just around the corner! Have you heard or read that one? I have and it keeps me going although it did not prevent my brother from committing suicide last August. It's not for me to say.

Yesterday, I traipsed around New York City again and today I feel like gloopy leftover oatmeal. There's my health problems waving 'hello.' Today, although it's only Tuesday, is a day of rest. It's not for me to say. 

My husband and I will be married 30 years this September. I want a ceremony in our Church to renew our vows. He doesn't like doing anything in public. It's not for me to say yet I know a compromise will come to us. 

My sons are both in their twenties and know everything, of course, so I have little or no input into their daily doings. I rejoice when we are all together and enjoy each other's company. When? It's not for me to say.

We live in New York but have a lovely condo in South Carolina. When will we get there permanently? What decisions are left to be made? Time will tell. It's not for me to say.

Just like when I was sick with cancer, I have lost some friends who, I must conclude, couldn't deal with my overwhelming grief these past nine months. Those friends have their reasons and I know new friends will reveal themselves. It happened before and it's not for me to say.

Reading the lengthy feature article in this week's issue of New York Magazine about my brother's ordinary yet extraordinary life, I can only conclude that we all make our way with adversity and triumph. We all struggle and compete and rise to many occasion. Oftentimes, we stumble and get right back up. At other times, like my brother, we choose not to get up again when we feel our work on Earth is done. (NOTE: The article, entitled The Man Who Was Immune to AIDS, but not what came after is not 'clickable' for those who do not subscribe. Later in the week, it will be available for all.)

As the final paragraph of the article says:

"Over time, (Steve's) sisters have provisionally come to see evidence for (a) less tragic view not only in his birthday message to Amy ('enjoy gift') but in the way he was found in the car by the police. With the seat reclined as far as it could go and a CD of Buddhist chants nearby, he'd propped his feet up on the dashboard. He was smiling."

It's not for me to say. I loved him anyway.

Monday, June 2, 2014

Glory Days

Glory is fleeting because there is always hard work left to be done. While my book won an impressive award as a Next Generation Indie Book Awards Finalist and I was feted and celebrated over several days last week at Book Expo America including a gala reception at The Harvard Club and a one-hour autographing session in the Headline Books booth, I am still reeling from all the events and experiences.

And I'm pretty sure trekking around Manhattan and the Jacob Javits Center carrying loads of books and materials threw me into a Lupus flare. On the eighth hour of the second day, I knelt down to re-arrange my bag and literally could not rise up! I took a deep breath and prayed my knees would do it just one more time. They did and I knew it was time for me to leave. Taxi!

The brightest spot came when one potential publisher read my book overnight and invited me back to her booth the following day. She gave me constructive criticism and I agreed with everything she had to say. So I will be revising and re-writing for awhile to finish this journey I began almost five years ago. I believe I will have a real publisher when I finish the work and I am highly impressed with her brand.

Other 'publishers' wanted me to pay for upfront costs such as reformatting, printing and marketing. There is no such thing as an advance anymore unless you are a well-known figure of some celebrity or established author. I politely declined their 'offers.'

It's a slippery road from writing a story that many have said is important and worthwhile for a large population of readers and I will persevere. As my prospective publisher said, I'm "this close" to a fine, finished product. She held her fingers one inch apart.

There were many other highlights including enjoying lunch with a costumed pirate one day at a shared table and learning that his day job is as caretaker of a now-deceased famous author's home on a beach in New Jersey. I met with a lovely British publisher who was eminently professional and kind even though he regretfully told me my book would not fit into his line. And on day two, I was privileged to sit with a publisher of military books. We had a fascinating conversation; one which ended with him describing his passion to me - spending time in one of eight abandoned beach cottages somewhere in Cape Cod. He won the yearly lottery to enjoy his week in September with no electricity or creature comforts and he was thrilled and animated as he spoke of it. I was enthralled.

I reconnected with an old work colleague who has authored several best-selling books and one that was made into a movie. It was wonderful to see Lorenzo Carcaterra and congratulate him on his successes. I was also happy to meet and chat with Steven "Stevie D." Dupin, a Los Angeles-based comedian and writer whose book also debuted at this year's BEA. Since it's one about fighting cancer and winning the war, we traded books and stories and he is an extremely likable Kentucky-born husband and father.

I shared a one cab with a publisher's representative who gave me a lead. I walked miles to visit each exhibitor's booth that I had pre-selected from the more than 1000 exhibitors there. I was handed free books that just added to my already-cumbersome load. Although I feel that I found 'the one,' I will be following up with many more over the next couple of weeks.

It was an amazing experience and one I will treasure forever. I'm 'this close' and yet it still seems so far away. Thank you to all who have supported my journey running backwards through cancer, Lupus and chronic illness. And please remember to learn about The ACE Study and how we can educate physicians how to interrupt disease in adults who have been maltreated as children. It's my mission and I'm sticking to it.

Monday, May 19, 2014

Awards and Plants

My book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness won an award from Indies Unlimited, an organization that celebrates independent authors "whose body of work is not obligated to a single large publishing company." It was a wonderful surprise to open an email with the heading "Congratulations" and learning all the benefits of the award itself, including a reception and medal ceremony on May 28 at The Harvard Club in New York City, a one-hour book signing in a publisher's booth at Book Expo America May 29th to 31st and a 20-minute video chat produced by Plus, over the four day period, I have the opportunity to meet and mingle with authors, agents, publishers and distributors and announcements of my award and work will be included in numerous publications and on several websites.

Funny thing is, I haven't made a dime from this book; nor did I or do I have any expectations that I ever will.

But it doesn't matter. Writing the book was a healing exercise for a chronically-ill person like me. It was my gift to the scads of others who are similarly struggling with acute disease, especially those who can tie it directly to maltreatment during childhood. The ACE Study proves that children who were neglected or abused are then biologically pre-disposed to getting sick as an adult.

A funny thing happened on the way to this forum - I've changed. Since publication of my book last June and the death of my brother last August, I've been re-traumatized and fumbling around trying to figure out who I am - again! My Statue, as described in my book, was my visualization for me, myself, and I and, most importantly, how I was doing that day or should take care of myself.

For example, if I woke up in the morning and visualized my Statue strong and tall, I went out confidently to face the world. If I woke up and saw a crack down the middle, an arm broken off, or it rocking back and forth on its foundation, I knew I needed to be kind to myself that day. Since my brother's death and just like when I was smacked down with Stage IVB cancer and Lupus, my Statue is not only dust, it is missing!

Where did it go? How could I get it back? Well, the answer finally revealed itself to me. I don't want it back. I am a living, breathing, growing organism who should not steel herself to the world as a block of stone. I should be open to healing and love and less guilt and worry. I am a newly planted bush, just rooting in the soft earth and sprouting baby leaves and tiny white flowers. It's my fourth 'new normal' in this life.

The lesson is that we can all remake ourselves, one tiny bud at a time. Change the self-image and you change the person. My life is no longer on hold. I have a lot of new things to explore.