Crohn's Disease ... No laughing matter

Yes, I am related to Dr. Burrill B. Crohn. My grandfather, Myron, was his younger brother. This fantastic article was just published about the discovery of regional ileitis and how my brother, Steve Crohn, also contributed to far-reaching medical science leading to a cure for HIV.

I hope you find it interesting and educational.

The Pharmacologist - September 2014

Article begins on page 132.

Just Scared

As someone who made a career out of being 'behind the scenes' helping bosses and clients look their best through my writing, coaching, and media spinning, it is all I can do but contain my fright as I launch the real me into the world with my memoir.

DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness has not only been a four-year journey of writing and re-writing, it has been a catharsis for me, healing many wounds that had been buried all my life. I am no longer the observer of my youth and now people will be watching me! I'm scared. 

Many people say they feel lucky to have had a life-changing trauma because life become rosier - or we learn the hard way to take the time to truly smell the roses, as the saying goes. I do, too. However, life continues as usual with all the ups and downs - a veritable roller coaster ride of triumphs and tragedies. It's what we 'survivors' do with them that sets us apart.

• Accept each blow with as much grace as possible
• Celebrate every milestone heartily
• Find the funny in every day
• Know that sadness and/or depression and/or physical pain will pass in time
• Arm ourselves with medical knowledge, particularly relevant to our own chronic conditions
• Live each day as if it is our last - a trite saying but altogether too true

I received the actual PROOF of my book last week. I was joyous! I couldn't wait to show it to as many people as I could. And then I crashed, saddened that some are no longer here to share it's physical-ness with me. In particular, I think of my parents - both writers either professionally and/or personally. My father longed to write a novel and, although he published several work-related "How To" books, he never found the time to write his thriller.

My mother dabbled in creative expression through poetry. Her poems were hauntingly beautiful, much like she was as a person. She was especially thrilled when I sent her my first news story with a byline in the early 1980's. My extended family, for various reasons, is not near enough either physically and/or emotionally right this minute to have a hands-on experience with me even though this memoir could not be completed without them. I  can't wait to send them their final hard copies. 

And my husband simply cried at the rawness of it all. 

So, I sit here today anxious for the book to finally be available for sale on Amazon and numb that the writing of it is over. Sure, I have set new goals (it's just what I do) and am doing as much traditional and social media marketing as I possibly can to raise awareness of how childhood maltreatment does lead to adult physical illness; plus how regular people, like me, can survive and live with chronic ailments without succumbing to disease or dis-ease, as I like to write. 

Carry on, my friends. Just carry on...'cause I want to get old with you. 

Pooh

Facebook is many things, including the ultimate source of immediate consolation in times of need. Thanks to a friend who chose to brighten another's day, I was reacquainted with Pooh Corner and singer/songwriter Kenny Loggins' wonderfully uplifting song House at Pooh Corner. I didn't realize how much I missed that house.

Of course it brings us back to a time of childhood innocence and safety. Just listening or singing along, you will smile, laugh, weep, and rejoice. The perpetually six-year-old Christopher Robin is in all of us. So it got me searching and I remembered a book I read in college, The Tao of Pooh by Benjamin Hoff. Hoff's book remained on the New York Times Best Seller List for 49 weeks in the early 1980s and connects the ancient Chinese philosophy of Tao to the wise, simple life of Winnie-the-Pooh, the beloved rumbly in his tumbly bear.

In a description on Amazon.com, the book is described as follows:

"The how of Pooh? The Tao of who? The Tao of Pooh!?! In which it is revealed that one of the world's great Taoist masters isn't Chinese - or a venerable philosopher - but is in fact none other than that effortlessly calm, still, reflective bear. A. A. Milne's Winnie-the-Pooh! While Eeyore frets, and Piglet hesitates, and Rabbit calculates, and Owl pontificates, Pooh just is. 

And that's a clue to the secret wisdom of the Taoists." 

Pooh just is. How hard is that to do?

When faced with chronic illness or disease, it can be very hard to reach a level of stillness. Or, conversely, it is forced upon you because there is absolutely no other option. You must lie still and  open your senses to the simple world around you whether that is within the confines of your bedroom or a hospital room, or - if you're lucky - your entire living quarters, you just are.

Those moments are fraught with fear and anxiety and distress until you let go; relax and accept. Meditate, if you will, on the sights, sounds, and scents around you. Contemplate at length on the bird that landed on your windowsill singing his song, the sound of the rain pelting the windows, the laughter of children in another room. Or, as in one of my most dire moments, acknowledging that the steady whoosh, whoosh, whoosh sound emanating from behind your head is the ventilator keeping you alive yet allowing the repetitive noise and motion to lull you to sleep.

Pooh gets all that. He knows that each moment is worth living and relishes the simpleness of it all. That's why we continue to love Pooh and his wisdom and that of the author who created him. Whether Tao or not, it is in the quiet times that we learn most of all.

"Well," said Pooh, "what I like best," and then he had to stop and think. Because although Eating Honey was a very good thing to do, there was a moment just before you began to eat it which was better than when you were, but he didn't know what it was called."  

- A. A. Milne, Winnie-the-Pooh

Kenny Loggins sings House at Pooh Corner

Feisty

With every attempt at publishing a book comes marketing. While my blog has held a spot for an excerpt for two years now, I've published the same one. Now, I decided to swap it out with a sample Chapter. I hope you will take the time to read and comment on it.

But today's blog is really about being feisty, a trait I believe I inherited  from my father's mother. And that pluck is surely a blessing and a curse. Sometimes I simply go too far; take risks. So let me tell you a little bit about my Granny.

In the late 1800's, my grandmother, Aline Lyon (whether she knew so or not) was slated to marry the soon-to-be-famous Dr. Burrill Crohn. A common practice among wealthy and/or culturally significant families of that era, the Crohns and the Lyons were not indifferent to match-making. Yet Aline was an independent young woman. Instead of marrying Burrill, she chose  to marry a true love outside of the families’ inner circle. This non-Crohn husband drowned at Orchard Beach before their first anniversary, uncannily after a scolding by her own father that he hoped the young husband would die from exactly such a fate since he was so disappointed in their union. As some sort of booby prize, Aline was then awarded Myron (Mike) Crohn as her second husband, and my Granny obeyed and married the Crohn clan's ""Black Sheep" and somehow, with her own brand of verve, held her family together during the Depression.

But my feisty Granny Aline also loved romance, drama or marriage or all three. Post her divorce from Mike after 11 years, she was married twice more to the same man; Joe Popper – a New York City horse and buggy driver. She died while my mother was pregnant with me; thus my being named after her utilizing the “A” from her first name as is Jewish tradition. Aline has always been described to me as a woman of determination, intelligence and great fortitude, as evidenced by this letter she wrote to the New York Times in 1944:

TO THE EDITOR

I am a hospital volunteer worker at one of the hospitals and I am hoping this letter will perhaps wake up some women who idle away their time at card games or teas when they could be doing good work. There is a serious shortage of nurses and the clinics that care for people who cannot afford independent care at home are badly in need of help.

The volunteers do good work and many women could spare a few hours a day to help until this war is over and things return to normal. Won’t women please consider this matter and try to help? It is not only a patriotic duty but an act of human kindness.

Aline Popper

New York, Nov. 15, 1944

Not many women spoke out at the end of World War II. Not many women described 'human kindness' as 'a patriotic duty.' I guess, with her nerve, she was ahead of the curve of women's liberation and wasn't afraid to talk about it. I have other stories of her great courage that I include in my memoir.

So I follow tradition. I'm not afraid to talk about what happened to me within the walls of my childhood home, nor the confines of a hospital during my critical illness. I just want to help, as corny as that sounds. But it is part of my healing as well; and my never-ending quest for learning. It's as easy as starting with your elders and examining the groundwork they laid for your values and morality - even if, in some cases, that means doing the exact opposite of what they did.

Looking back at my Granny, however, I can only hope that I've made her proud as she keeps an eye on the granddaughter she never knew on earth. And thank you, Granny, for your audacity to speak your mind. I'm carrying on with that tradition no matter what the consequences.

My father and I taking a risk at a New Mexico mesa; 1973