I plan to make these Chemotherapy Blog Entries “Day in the Life” -styled because everything else you can find on the Web or in Textbooks. I’m always CANDID and in a world where everyone has some sort of agenda, please take comfort that what you read here is TRUE. “I say what I mean, and I mean what I say.” My father was big on that saying and I must say that it guides my mouth and life every day. It’s also why living in Los Angeles, California was difficult for me since nearly everyone is so full of crap out there. That said, however, Santa Monica, CA might be the most beautiful place in the WORLD to live and it’s visions of walking through my old neighborhood on 7th just off Montana Avenue which makes me want to get better so I can do a Victory Lap, get something from Coffee Bean to sit outside there and pretend I am deep in thought while I wait for Jessica Biels, Jennifer Beals, Jennifer Love Hewitt or Halle Berry to walk by.
On a gorgeous California day during the late lunch hour in and around that area which makes up the heart of Santa Monica, you feel as if anything you’ve ever dreamed of can happen at any moment. That is the beauty of Life and I’m lucky I found such a place. Now I am hoping I eventually find the right person to share it with and a Dog to help us make memories. That is the antithesis for how I often feel these days as I know the passage of “hard” time is the best I can hope for. But the combination of the medication side effects, administrative health care paperwork and absolutely no guarantees of success makes for a life of hopefulness. That’s why the story I am going to share today bothered me so much as it struck at the very core of my Hope. That is, my Hope for me and the Hope I have for other people affected by Crohn’s Disease. The annoying part of the story is that I received news of the “rejection” after I was to have routine blood tests and due to numerous needle sticks I had to be stuck six (6) times because my veins have become to needles what my penis has been to water! FLACCID!!!!
I recently wrote the 1,000 Word Essay (approx. 2 pages) pasted below for the purposes of entering into a Contest for people with Crohn’s Disease and/or IBD. More specifically, the Contest is called the “IBD ICONS: Living beyond Ulcerative Colitis and Crohn’s Disease.” The Contest is sponsored by both Janssen Biotech, Inc. (“Janssen”) and the Crohn’s & Colitis Foundation of America (“CCFA”). I was kindly notified of it a few weeks ago by a friend on Twitter. They want applicants to write an Essay about how they have accomplished various things in Life despite the obstacles presented by Ulcerative Colitis, Crohn’s Disease and/or Inflammatory Bowel Disease. The Grand Prize is an all-expense paid trip for two (2) to Las Vegas on December 3-5, 2011. Mind you, my main purpose in entering was to call attention to all I have accomplished, and hope to accomplish, so that a child or parent with these terrible diseases can DREAM about accomplishing things they thought were now closed off to them.
Since the website had NO ESSAY SUBMISSION DEADLINE DATE LISTED, I nevertheless checked their main site, “IBD ICONS,” EVERY DAY for the last two (2) weeks of August and for the first few days of September because I had been working so hard on fine-tuning what was initially an 8,000+ word Essay. However, on or about September 5rd, via a Click-Thru Link, a Notice was posted that “Finalists will be posted on September 26th” and no additional Essays were being accepted. It did not even say when the Submission End date was. As it took me TWO (2) weeks to edit down an 8,000+ Word Essay to the required length of under 1,000 words, naturally, I complained to any email Janssen Biotech names I could find on the site (or at the CCFA but this is CLEARLY a Sweepstakes being run by Janssen Biotech) and in 2-emailed responses from Janssen Biotech Representative “Linda Davis” they were quick to back-pedal that an “End Date” of August 26th was posted on the website (WHEN IT CLEARLY WAS NOT), besides, in these Sweepstakes any such dates for Submission End Dates of Prize-Qualifying Essays must be Prominently Posted and I had checked through various links on this main IBD ICONS site for over 2 weeks and they didn’t even have a CONTACT PERSON TO CALL ABOUT IDENTIFYING SUCH A DATE.
Again, while I would not have minded a Free trip for two (2) to Las Vegas, the odds are that the early December, 2011 Grad Prize trip would occur at the height of the ravages of my Chemotherapy such that I would have to give away the trip, had I been fortunate enough to win it. However, THAT would have been a pleasure of a lifetime to give away such a trip to son or daughter with his or her Dad or Mom. Thus, my main intent was to add to the “DREAM” possibilities a child or a parent could aspire to despite battling Crohn’s Disease. But I came away feeling yet again that Crohn’s Disease is treated like a “Second-Rate” Disease as this would have NEVER HAPPENED IN A BREAST CANCER SWEEPSTAKES.
Even the response to me by Ms. Davis from Janssen was condescending because what they should have done was apologize for any confusion and simply accepted my Essay and either disregard it when evaluating Essays or, if it were by chance the winner, they could again disregard it but bring it to the attention of all the applicants as a “finalist” just so my message gets across. Bedsides, how many more Essays do you think they received from the apparent Essay Submission apparent Cut-Off date of Friday, August 26th and when I tried to submit my Essay in and around Monday, Septembers 5th? THIS is what is so infuriating about Living with Crohn’s Disease as you, your Family and Friends know how ravaging the physical, mental, financial, emotional, social and professional effects can be yet others treat it like some Ceremonial Sickness which challenges few people and provides for an image-enhancing Black-Tie Charity Event.
I don’t want to make Janssen out to be “bad people” by writing this Blog Entry because their intentions are honorable, but they need to know that little “typos” on web sites and sloppy compliance with Sweepstakes Rules have consequences and that they need to treat Crohn’s Disease with the same professionalism with which they treat Cancer and other more mainstream Charitable Causes which they support. To that end, I hope that some of you will email the person who wrote to me from Janseen (i.e., Linda Davis – email@example.com) and explain to her how the manner in which her company has treated me is misguided, disrespectful and WRONG. Nevertheless, I just appreciate you reading this Blog Entry and my 1,000 word Essay below. But WHEN IS CROHN’S DISEASE GOING TO GET THE FIRST CLASS TREATMENT IT DESERVES?
Following Dreams & Living Life to its Fullest
Despite the Challenges of Crohn’s Disease & IBD
Written by: Michael A. Weiss, Esq., MBA
“Your Crohn’s Disease will never be a problem for us;
But how you handle it, could.”
My girlfriend in law school uttered those prophetic words to me one night in a hospital in Boston when I thought my disease would cause me to lose her. She certainly set me straight by succinctly pointing out – only I could do that. We are no longer together but I’ve never forgotten those words of wisdom and I have focused on “Moving Forward” ever since. Moving forward can make you an “Inspiration” to those who care about you, while wallowing in self-pity will only make you a “Bummer.” Which one do you want to be? I’ve always opted for being an Inspiration; they get prettier girlfriends. 🙂
I’ve tried to utilize this positive attitude and pro-active approach throughout my 25+ years of battling Crohn’s Disease especially while being hospitalized over 200 Times & enduring approximately 20 major surgeries. My ability to always focus on “moving forward” attracts the most thoughtful, compassionate and genuine friends who not only help me cope with the various pervasive challenging attributes which make up Crohn’s Disease (i.e., the physical, mental, emotional, social, psychological, financial, familial and professional effects) but they also teach me how to be a better friend and a better person. Additionally, through my 25 years of experiences with an incurable chronic illness, I strongly believe that Friendship is the universal “Currency” in Life. By application, I would appear to be one of the wealthiest people in the world. However, American Express and MasterCard still do not accept this form of currency as payment for my monthly bill. Nevertheless, the quality and depth of my Friendships are the characteristics about my Life which I am most proud of and, ironically, I have Crohn’s Disease to thank for that.
I’m 48 years old now, I was 21 when first diagnosed and the first “lessons” taught to me by my illness included being self-reliant and trusting of my body. It also quickly became apparent that a Support Team and a Sense of Humor were going to be necessary “resources” which I had to nurture and develop in order to most effectively and enjoyably live my Life. Over time, the importance of ALWAYS maintaining “Perspective” became the coping mechanism which I shared most with others because it is the easiest skill to personalize. I utilized all of the above to pursue my dreams of being an Entertainment Attorney, Film Producer and a Published Author. Whenever pain, a flare-up or a hospitalization potentially compromised my dreams, I nevertheless strived to be prolific, enthusiastic & resilient. I might have been in the hospital or lying on my couch at home clutching an icepack trying to ease my abdominal pain, but I was always reading, listening & studying to make the best use of my “downtime.” I couldn’t do anything
about the unpredictable timing and physically disabling effects of the flare-ups, but I wasn’t going to let Crohn’s Disease dictate and control the growth and development of my mind.
In 2001, I wrote the critically-acclaimed Book entitled, “Confessions of a Professional Hospital Patient,” which chronicled my battle with Crohn’s Disease, both in, and out of, the Hospital. I have been told by readers that the Book uniquely captures the plight of the chronically ill and does so in an inspiring and entertaining fashion. These unique attributes quickly landed me on NBC’s “Today Show” and the mainstream attention which followed resulted in a National, Regional and Local Book Tour which also enabled me to raise positive awareness about Crohn’s Disease. However, the tragic events of “9-11” changed the nation’s focus and after September 11, 2001, the nation’s interest in Healthcare, and by extension, my Book, were temporarily, and understandably, placed on-hold.
The Book has become an “Evergreen” seller and reviews continue to emphasize that it is “a very accurate medical and patient depiction of the hospital setting” and it is “laugh out loud funny” & “hilarious.” Given the harsh realities of Crohn’s Disease and that “laughing” is not something one typically thinks about when discussing such a difficult illness, I’m proud of the Book being accurately informative yet also uniquely capable of providing a much-needed “laughing escape” for my fellow Crohn’s Disease patients and their friends/family. Not a day goes by when I don’t see a Posting on the Web or receive an email, a letter or a tweet telling me that I brought a smile to the face of a Crohn’s Disease patient, child or parent who never thought such a book about their miserable disease could do that. Nothing I will ever accomplish in my Life, short of becoming a parent, can compete with that recognition as it makes me feel like what I am doing with my Life is making such a profound and positive difference in the lives of others.
In and around July, 2010, Crohn’s Disease-related medical problems rendered me disabled. But, when I was healthy enough, I utilized global and technology-powered Health Care Social Media Platforms (“HCSM”) and was thus afforded the opportunity to reach and influence the growing niche of people around the world living with some form of chronic illness through my “Professional Patient Perspective Blog,” Podcast, & on Twitter @HospitalPatient. Unfortunately, it now appears I am now “Permanently Disabled” because in May, 2011, I was diagnosed with Bronchiolitis Obliterans with Organizing Pneumonia (more commonly known by the acronym, “BOOP”) which I contracted as a result of Crohn’s Disease and/or as a result of taking the Crohn’s Disease “Anti-TNF Agent” drugs. Accordingly, I started an intensive regimen of Chemotherapy in late August, 2011, and my prognosis for a significant recovery from the BOOP is good.
Perchance to Dream: After I successfully “Beat the BOOP,” I plan on writing a Second Book which I can only imagine will reach and help a great many more people
around the world particularly if an Audiobook version is Produced in a variety of different languages.