Wednesday, September 17, 2014

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.


Monday, September 15, 2014

Life takes its time...

Last time I wrote, I expounded on what it feels like to turn 54-years-old after never thinking that I would even live this long due to cancer, lupus and chronic illness. None of my doctors gave me any encouragement. But life takes its own time and I'm glad.

Today I celebrate my marriage of 30 years to the same man - yes, the same man! I know that is uncommon but I think it might have something to do with commitment and honor and love and - to tell the truth - neither of us ever had anywhere to go when we threatened to leave!

Albert Einstein said: "The only reason for time is so that everything doesn't happen at once."

Ain't it the truth. As I scroll through my memories, I could never have been able to understand them or learn from them if everything ended up in a jumbled pile of contorted stuff. That's why we process things as they come to us. That's why I'm not a big picture taker; I want to take in what I am experiencing, seeing, doing without worrying if I get the shot.

Yesterday was a great day for memories. A family day when my husband, two sons and I went to New York City to see STOMP off Broadway, walked from the theater to Little Italy and the Feast of San Gennaro and wound our way through masses of people, cutting through Chinatown, to get to an Italian restaurant my Italian husband remembered, the original Puglias. Not only did we eat delicious food and toast my son's 21st birthday, there was singing and clapping and waving of napkins and standing on chairs. Ahhhh life! It happens in moments.

Today I get to think of all those moments because I'm tired; oh so very tired. My disabilities render me physically useless the day after such a moment. This is when life takes its time and I get to remember yesterday and all the days, months, and years before.

The only thing we forgot to do was take a family picture! Rats. 

Mulberry Street, NYC




Friday, September 5, 2014

SUICIDE PREVENTION & EDUCATION WORKSHOPS

Hi, all. Please join me locally or visit SISFI for a full schedule of radio shows, workshops and other events taking place September 17th to October 3rd.  Suicide affects each and every one of us whether someone close to us completes suicide or we know others who have been impacted or even mentioned it aloud. This is especially timely due to the loss of comedian Robin Williams and, more personally for me, my brother, Steve Crohn. Thank you to Ossining Public Library and Ossining Communities That Care for making this happen in my hometown.


Tuesday, August 26, 2014

Dying to Live

Today is my birthday. I am 54 years old. Eighteen years ago I was pronounced dead on arrival at one of our local hospitals, suffering from a misdiagnosed cancerous tumor wedged between my heart and lung. I had Stage IV lymphoma. No one thought I'd live past that night let alone nearly another 20 years.

And live I have - sometimes with wild abandon and other times quietly and at peace. As stranger and stranger health issues crop up (due to the aggressive chemotherapy I received) and I remain a medical oddity, I triage myself and move on. Since I wasn't expected to live, no physician can predict the toll the cure took and how long it will rob me of certain abilities. Am I scared? Heck yeah.

This is why I try to choose to live each day as if it was my last while I dance like nobody's watching. That's doesn't mean I'm always Happy like Pharell Williams sings; nor does it mean I escape tragedy. Those of you who follow my blog know that I am brutally honest about the issues I face. No one is more surprised than me that I am able to face these challenges time and time again, especially the suicide of my brother, Steve Crohn.

I don't really want to celebrate this year. My brother's death occurred on August 24, 2013, just two days before my birthday. He sent me a card that arrived a few days later. It reads: "On your birthday, remember that every day is a gift. So pretend tomorrow is from me." At first, I thought it was a joke. Slowly but surely, I've come to accept that he was giving me permission to live many tomorrows even though he wouldn't be here.

At 54, I'm going to do something I vowed I would never do. I'm going to get a tattoo on my ankle of my brother's paint palette and paintbrush. The tattoo artist is working on a sketch now using his actual palette as a guide.

As I work to revise my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness, I am mindful of the many changes that have occurred in my life since I first wrote it. The title will change, the 'innards' will change, its scientific references will be updated and I will have to stop myself from writing a brand new book.

That's okay. I'm here; even if I had to die a hundred deaths in the past 18 years to stay.