Crohn’s Disease 30-year Caretaker Interview – My Mom

MAW PPP Dec 21 2012

As I start to embark upon shooting a Documentary Film about Crohn’s Disease for the purposes of raising awareness of its possible potential severity and pervasive nature, I thought about how different patients must perceive it and that I must capture that to tell all sides of the Crohn’s story.  However, I think I have that angle covered by planning to interview a variety of such patients from all over the world. But then it dawned on me that “Caretakers” of people with Crohn’s Disease might have valuable insights to also contribute to the challenging experience of battling this autoimmune and incurable disease.  In that regard, their perspective would surely add another much-needed dimension to the story.

Why MY Mom for the Crohn’s Disease Documentary?

Since I’m pretty much stuck at home awaiting a February, 2014 Hip Replacement Surgery and my chronic lung inflammatory problem, which causes a sudden onset of severe shortness of breath, is making my ability to function as my typical ebullient self as predictable as the playing status of Green Bay Packers’ Quarterback Aaron Rodgers, I figured I’d start at home – with my MOM.

Over the thirty (30) years I’ve been struggling with Crohn’s Disease there have been a variety of “Caretakers” from lithe and understanding girlfriends to concerned Aunts and Uncles to extremely selfless close friends but my Mom was there at the beginning and she’s now seen me become “systemically disabled” by Crohn’s now that I live with her.  Prior to living with her, she certainly knew of all my struggles and was always there to comfort and help me in any way possible, but it wasn’t until 2010 when I had to move back to her home in New Jersey from gorgeous Santa Monica, California, when my body finally betrayed me, taking away much of my independence in the process.

It’s possible things will get better for me in the future with the advent of new treatments and drugs but it’s no longer just the Crohn’s Disease which fuels my inability to function independently.  As my “go-to” gastroenterologist in New York City wrote when filling out some of the numerous disability claim forms, I’m “systemically disabled” due to the numerous manifestations of an incurable, aggressive autoimmune disease [and likely by some of the drugs and treatments I had to ingest/endure to try to keep the disease at-bay for the past 30 years so that my entire small bowel was not compromised].  The best vantage point to this apparent deterioration of my quality of life or at least to the radical changes I face as a result of having Crohn’s Disease for 30 years is that of my Mom’s simply because she lives with me and witnesses it 1st hand.

How I cope with a murky medical future

At times, I find it very difficult to accept these Crohn’s-induced limits on both me and my lifestyle but just like one of those Chinese handcuffs, the more I resist; the more pervasive the limits become.  To escape the madness of these Chinese handcuffs, some jokingly suggest to “embrace the suckage;” while others lugubriously wallow in the uncontrolled unraveling of the life they once had.  Based on my experience, I think the former is the healthiest mindset which is needed to ward off the inescapable thoughts of the latter which seem to pop up in daydreams, nightmares and in Facebook when glancing at happy slice-of-life perspectives of all the people you’ve ever come across in your life.  Thankfully, I’ve been able to keep my own challenges from affecting that wonderful feeling of sharing in the realization of a friend’s hopes and dreams as depicted on Facebook.  I never want to lose that ability to be happy for the people I care about and by keeping busy with these various projects I am able to live with some semblance of purpose and that drives me.

More specifically, utilizing this almost Zen-like mindset to thwart off thoughts which have absolutely no productive place in my life, I’ve chosen to stay busy and document my Crohn’s journey in the hope that what I discover helps other people facing the same predicament; whether it be because of Crohn’s Disease, Ulcerative Colitis, Cancer, Rheumatoid Arthritis, Fibromyalgia or any other disabling medical problem which they had no part in precipitating.   Forming the Charitable Foundation, the “Crohn’s Disease Warrior Patrol” [“CDWP”] was a big step in my journey and that has led to the CDWP producing this Documentary.

I hope you enjoy this “conversational” interview with my Mom and you discover something positive out of our discourse which helps you in your battle.  I intend to interview other Caretakers for the Documentary and if you have any suggestions given my aforementioned intentions, please email me, tweet me or leave me a Comment below.

Ain’t to Proud to Beg

Lastly, it takes a great deal of time and effort to coordinate the Patient-to-Patient Support Consultations afforded by the CDWP just as it takes a great deal of time for me and the CDWP to produce and share helpful Video content with people all over the world fighting similar battles.  In that regard, if you are in the appropriate financial position and are so inclined to make a tax-deducible Donation or to purchase a tax-deductible $25.00 CDWP t-shirt, please visit our website at www.TheCDWP.org.   Thank you.

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