Michael A. Weiss, Professional Patient, Chronic Illness ExpertI don’t look like this anymore. The Picture was taken while on Vacation with my Mom in Europe in the summer of 2008 after my Mom’s best Friend of 53 years, my Dad, had passed away. Mind you, I was quite fond of him as well. I didn’t want my Mom traveling alone and for that Honorable Intention I got to embark upon the thrill of a lifetime. You need to understand something about my Mom; she’s now 76; looks 46; and thinks she’s 36. Even Healthy, I have a hard time keeping up with her. But that was at least SIX Major (6) surgeries and MANY Hospitalizations ago. As I write this in May, 2011, I wonder if I ever will get back to being “that guy with Crohn’s Disease who somehow doesn’t look like he’s been through 200 Hospitalizations, 20 Surgeries and Financial Ruin” – and will it be worth it? Will there be a “Happily Ever After”?

I was diagnosed with Crohn’s Disease in and around 1984 when I was 21. Yes, when I was 21 it was a Very Good Year for Raven-Haired Passionate Women and Fun times with my almost Life-Long Friends, but in retrospect it was to be the defining year of my Life as Crohn’s Disease, in one way or another, would come to affect me, my Friends and my Loved Ones in ways I couldn’t have possibly foreseen. Sure, every “immune-suppressive” Treatment Drug came with Disclaimers about the possibilities of terrible things happening to me as I got older but that’s the thing with Crohn’s Disease and many other Chronic Illnesses, often the Cure can be as bad as or worse than the Disease but you have no choice because the underlying Disease must be treated in order to resume some semblance of a Life.

I’d always smile through Hospitalizations and Surgeries (i.e. to my Friends and Family; as the Nurses and Physicians bore the brunt of my Frustrations and I commend them for the Professionals that they are for allowing me to maintain a Brave Persona to the outside world by absorbing my body blows of Frustration from the Pain, Frequency, Loneliness and Helplessness) because they always wound up elevating the Quality of my Relationships and in a strange way that gave me a Clarity to Life which has been an Asset. I also learned how to “be who I am” no matter what the circumstance and I’m proud of my Resiliency and that I’ve never grown “Angry” despite my Crohn’s Disease taking away from me every tangible “thing” of value I have ever owned. Perhaps there is a lesson purely in that similar to how recent Tornado Victims in Alabama and Mississippi learn quickly that “things” don’t matter so much in a Life in which WE can be literally swept away in an instance. But in the ensuing years, let’s say when I was 30, it was a difficult year as I continued to get Sick while my Friends got married, bought homes and started families. All the while, I was getting caught up in a Downward Spiral of Accumulating Health-care Costs that was slowly causing me Financial Ruin, and also at the end of each month, Emotional Challenges. So, when I was 30, it was a very good year for my cherished Friends and also for a few Raven Haired Passionate Women who helped me find comfort from the storm but it was the beginning of an ensuing 18 years of “Groundhog Day-like” Medical Problems, Medical Bills and Bad Luck in Business.

I’ve always been proud of my Friend’s achievements and I marvel at watching them change as they take on the additional roles of Mother, Father, Boss, Community Leader, etc. and I love the summer days in their pools getting to know their kids and identifying the little “Tells” which reveal them to be exactly who they are, i.e., the children of my closest friends. Maybe it is a laugh, a practical joke or a pensive personality but meeting a miniature version of a Friend you know for 35 years is quite a thrill. That thrill was always accompanied by a warm feeling inside that one day soon my Life would “straighten out” regardless of the Crohn’s Disease.

At that time (approximately July, 2001), while recuperating from Spine-Fusion Surgery, I thought the best use of my time was to write a Book that all my Friends kept telling me was “in me” regarding the “amazing way I cope with all the adversity that’s been thrown at me.” I agreed that I had a unique “coping perspective” but little did they know that THEY were the “secret sauce” to my success. They were the reason I was able to cope so effortlessly. Nevertheless, I felt the need to share my ability to cope with Chronic Illness since I was always getting phone calls from concerned Parents of newly diagnosed Teenagers asking me questions the answers to which were becoming repetitive yet much more philosophical than I had imagined. I noticed I had actually developed some type of “skill” after all I’d been through with my chronic illness.  “Damn the torpedoes,” as they say, since helping those Parents and alleviating their fears brought me more joy than any Business Deal or Legal Transaction I have ever consummated. My Aim was certainly true but Publishers weren’t interested in a Book about the “Hospital Patient Experience” and Chronic Illness that was multi-dynamic in terms of it being Informative, Poignant, Real, Inspiring and Laugh-Out-Loud FUNNY.

“Funny” was the way I processed my Crohn’s Disease. The Disease is not only a “wide spectrum disease” but it seems to affect different patients in different ways almost like a Chameleon Disease. Thus, anytime I came upon a “Medical Expert” who decided how to treat me before “Listening” to me and learning more about my particular experiences with Crohn’s Disease, I knew I was the Expert and he was the Student. No matter the Degrees, Pedigree or Sincerity with which that Physician believed he was a Crohn’s Disease Expert, not listening to me was the “Tell” that he was clueless about the Chameleon-like essence of Crohn’s Disease or it meant he was simply arrogant. If he only played Poker, I’d be able to finance my Medical Care. That made me laugh because I have been fortunate to be treated by a few True Medical Experts and they are only so denoted because they LISTEN and LEARN. Then they practice and preach what they’ve learned and Patients are the beneficiaries of this Bank of Knowledge. It was also always funny to me when my Friends would try to figure out why I could eat McDonalds but couldn’t eat healthy fibrous vegetables. I would tell them that some of the World’s Greatest Medical Minds pondered that same question as they researched how to best treat and hopefully eventually cure Crohn’s Disease but its auto-immune component and counter-intuitive Patient reactions and ability to normally digest McDonalds French Fries made such Research agonizing. I guess it could have been worse; I could have flaunted my ability to eat White Castle!

I wanted these Nuances in my Book along with the importance of the Support of Friends and Family in attaining some degree of Normalcy despite a Chronic Illness which thrived on anything but Normal or Predictability. I wanted my Book to share some of the incredibly Funny things that have happened to me as a result of Crohn’s Disease simply to show that Laughing doesn’t stop once you are diagnosed with a Chronic Illness. I also wanted the Book to be called, “One More Rectal Exam and I’m Outta This Hospital!” But somewhere in there was a Deal-Breaker.

My desire to help others was so strong that I looked into every possible option to get my message across after enduring multiple Small Bowel Resections and/or “Strictureplasties” to the unbelievably painful Spine Fusion Surgery and the then -100+ Hospitalizations for Crohn’s Disease Treatments in which I would often check into the Hospital in late Winter and not be discharged until early Spring. Accordingly, I “Self-Published” the Book, “Confessions of a Professional Hospital Patient.” I changed the Book’s Title because candidly it was not reflective of the Book’s even-tempered “take” on the Hospital Patient Experience and I thought the aforementioned Title was a bit antagonistic whereas I am not, and the Book is not.

I also figured my “Contacts” in the Entertainment Industry (I had been practicing Entertainment Law for several years) might help the Book get some initial Attention because you’d be surprised at how many High-Profile people suffer from unfairly stigmatized Chronic Illnesses such as Crohn’s Disease and “Inflammatory Bowel Disease” (or “IBD” as it is commonly referred to) such that I was often called by some VERY well-known people about my Crohn’s Disease because I was always 100% Open about it during meetings in the event I had to excuse myself to go to the Bathroom an inordinate amount of times or simply when playing Tennis on the weekend for the same reasons. I always figured the Illness chose me and I had to make the best of it. Perhaps another person might not have been so eager to go on TV and Radio Shows to discuss a Chronic Illness such as Crohn’s’ Disease but I felt that was my obligation since the Illness is sorely misunderstood by everyone from Medical Professionals to the General Public. It is THAT message which is a Running Theme in the Book. Also, exactly as I had prayed, hoped and predicted, my secretive Entertainment Industry Colleagues got the Book into the right hands and after they read it, I started to get Major Media Opportunities to talk about the Book. It may not have been a very good “year” but it was turning out to be a GREAT summer of 2001, when I was 38.

The Book was written in July, 2001, based on my then almost 20-year battle with Crohn’s Disease which is Chronic, Incurable and Auto-Immune so it has the enduring attribute of exposing me to all sorts of medical issues, ailments and concerns. No part of my body was left untouched from the effects of my Crohn’s Disease. From my eyes to my feet and everywhere in-between – and I mean EVERYWHERE, my Crohn’s Disease began to transform me from a Self-Published Patient into an Author which Executives at Publishing Companies would soon refer to as having an Evergreen and Diversified Audience. Thus, I had become a Patient “Expert” on a variety of Diseases/Ailments and for that reason the Book had WIDE APPEAL to people who were Hospitalized ONCE, Chronically Hospitalized and/or Hospitalized for a variety of Disease/Ailments. Subsequently, I have also kindly been told that the Book uniquely conveys how to cope with Chronic Illness – both IN and OUT of the Hospital – and it also details “A Day in the Life of a Hospital Patient” never before documented so methodically and humorously. I think Writers I admire like the late great John Lennon would rejoice in that description of prose which brings interest and humor to such a seemingly boring topic.

Despite it being almost Ten (10) years later and me now being hospitalized over a Total of Two Hundred (200) Times and enduring an aggregate of 20 Major Surgeries, I still get tremendous anxiety every time I must set foot in a Hospital and that’s why I wrote “Confessions of a Professional Hospital Patient.” I wanted to help alleviate the unfounded Fears surrounding the “Hospital Patient Experience” and to elaborate upon the Real Fears. Perhaps even more importantly, I wanted to share my experiences and insights regarding “How to Live, Love & Laugh with Chronic Illness.” From all accounts and Reviews, I succeeded as the advent of “Health Care Social Media” has helped me reach the Niche Audience described above and not a week or merely a day or two goes by in which I don’t receive some type of communication thanking me for sharing my Perspective on Chronic Illness because it changed their Lives or the Lives of their Friend or Loved One. The Book Royalties help but that’s just to pay down my Medical Bills at the end of the Month. It is those Comments and Emails which make me feel like the Wealthiest Person in the world. After all, how many people can say that Winning an Oscar or earning Millions of Dollars could not replace the Value of getting Communications from people all over the World that somehow you’ve had a positive influence on their Life? And mean it? Perhaps I am a sappy schmuck, but I do mean it and THAT has turned into my “Purpose” in Life which gets me through the rough patches I have with my Crohn’s Disease.

By the way, I do plan on someday soon writing a Sequel which incorporates my Podcast, Videos and Additional “Lessons Learned” from 10 more years with a Chronic Illness as I think “Health Care Social Media” would spread my helpful contributions to people all over the World in an almost Instantaneous “Distribution Method” never before seen by Publishers and Bookstores. I’m just waiting for a Smart Publisher/Audio-book Producer to make me an offer and, besides, my Journey within the Health-care system being hospitalized for Crohn’s Disease or immune system-related illnesses has not quite ended. For example, as recently as April/May, 2011, I was in and out of the Hospital several times for treatment of “Atypical Pneumonia” which turned into a serious Lung Problem and required Lung Surgery on May 9, 2011. To that end, I am now battling some type of Lung Disorder identified by its Acronym “B.O.O.P.” likely brought on by some new Crohn’s Disease drugs I took for approximately Five (5) years. Therefore, Mr./Mrs. Publisher, Audio-book Producer and Oprah, I need a few more weeks on Prednisone before I am ready to move forward.

As the Book was published via “Print on Demand” Technology, I faced an uphill battle as the National Chain Bookstores would not take the risk and “Stock it” for this was a New Technology and, after all, how could a Self-Published Author be any good? Moreover, what could he or she know about anything? They were right that I don’t know much about Publishing but literally within a few weeks of the Book’s Launch in July, 2001, and thanks to some initial excellent Reviews from some very kind people who gave me a chance, I was featured on NBC’s “Weekend Today” TV Show and that led to a Featured MSNBC/CNBC Segment about my “Life Story” in MSNBC and CNBC markets throughout the United States. In turn, that led to more TV and Radio Publicity and I was finally swayed to hire a Top-Notch Book Publicist (i.e., Ruder Finn) because it appeared I was headed to an “Oprah” and/or “Larry King” appearance and I needed some “Polishing.” I am only “name-dropping” to set up what happened next, i.e., on Monday, September 10, 2001, I did Nationwide Morning Drive-Time Interviews via Satellite which were to be aired Live on the different Radio stations all over the country that day or Taped for the following week. However, on Tuesday, September 11, 2001, the tragic events of 9-11 unfolded and for obvious reasons – interest in my Book and anything unrelated to that Tragic Day – waned.

It had felt SO GOOD to share my “Story” with others while being interviewed in the different Media Formats but it was clear that the World was now a changed place after 9-11 and it would take some time before Health-care would become Dinner Conversation. Not that you had to know anyone personally who was tragically killed on that horrific day of 9-11, but I lost someone who at one point in my Life was a very close friend. We hadn’t spoken for years and when I learned that he left behind a Wife and 3 small children, I cried for him. In fact, I was on my way to record a pre-arranged 30-minute sit-down Live-to-Tape Interview with Northeast Regional Talk Show Host Steve Adubato for his show, “One on One” when a mutual friend of my Fallen College Buddy called me with the news. I was literally driving to the Interview. I tried to cancel the Interview because it felt wrong to be hawking my Book on the day I learned that a Close College Buddy was killed in the tragic events of 9-11 but Steve Adubato convinced me to just sit down with him and we would talk about 9-11 as a tribute to my Friend. I agreed and Steve was a man of his word and while we did get around to talking about my Book, we did reminisce about how my Dad would take me for car rides as a kid to the site of what was to be the World Trade Center. My Dad was a “Hands-On” Mechanic and he looked at the building of the World Trade Center the way I’d look at new Technical Effects in Movies.  He was fascinated by it and he wanted to share his enthusiasm with me.  That was a Memory I hadn’t thought of since I was maybe Ten (10) years old.  But now that Memory is supplemented by the Horror my old friend must have felt on 9-11.  I choose to smile and think about my Dad but I do so with deep reverence for an old friend who incidentally was a principal player in one of the funniest pranks ever played on me.   I guess that’s a good example of how I “deal” with the things in Life which can’t possibly explained; I try to find the upside and leave the other stuff for some other time.

My appearance that day on Steve Adubato’s show was emotional and I believe he replayed it many times as there was something almost “jazz-like” about it since Steve and I were “improvising” yet also taping a Live Interview that wouldn’t air for a few weeks yet it was only a few days since 9-11 and somehow we “struck the right chords.” Thanks Steve for being so understanding and for those of you out there who are unfamiliar with his work, you should Google him and watch him Interview people from all walks of Life.  He’s an Interested Interviewer who Listens.  Given what had transpired on 9-11, the end of that Interview signified that I had to move on with my Life and I continued my Career as an Entertainment Attorney and Film Producer and began to experience professional success that kept me occupied while my Crohn’s Disease was kept at bay – for the most part. I also always tried to work as hard as possible almost as if I were trying to make up for all the lost time in Hospitals and Doctor’s offices and I thought for sure that all the Business “seeds” I planted would yield fruitful “passive income” in the future to guard against my possible inability to work due to being Disabled from the many perils of the Auto-Immune Component of Crohn’s Disease. Unfortunately, and just like the fortuitous circumstances surrounding my Book just about to “take off” in the Mainstream, these Passive Income Deals have not yet yielded any significant income while on the other hand my Crohn’s Disease was becoming quite prolific – again.

I had moved out to Los Angeles, CA to be closer to these Passive Income “Deals” because I felt that increased my ability to achieve my long-run objectives. I had also heard that the Deal-Makers in LA were everything the Stereotypes said about them – and more.  Therefore, I had to be on top of every detail to guard against being taken advantage of so living in Los Angeles was a necessity.   However, after approximately 2 or 3 years in Los Angeles, CA, some VERY serious and bizarre Crohn’s Disease-related Health Problems occurred and they began to expose the Vicious Cycle of Medical Debt I had accrued over the course of 20-25 years of having to Live with, and Pay for, a Chronic Illness. You’d think my Crohn’s Disease, which does seem to have a mind of its own, would have moved on to someone else by now but its full vengeance was yet to come. However, just before its Disabling “Knock-Out” Punch in 2010, in and around 2009 during the Presidential Debates my old friend “Health-care” was back in the News. It was once again Prime Time Dinner Conversation and I really missed my Dad because it was those types of issues which would fuel our relationship during the Salad and the Main Course but then cause it to explode during Desert. I loved my Dad but such is the nature of Fathers and Sons.  He’d smile if he read that.  Nevertheless, during that 2009 period, I received a Book Royalty Check that seemed WAY out of Whack and for the first time in years I seemed to be at the right place – at the right time. Since I had always thought that the Web would be a Great Resource for Patients such that “Health Care Social Media” would be this new “Tool” for Patients to almost instantaneously share information and experiences, I owned the Domain Names surrounding “HospitalPatient.com” and it was even printed on the Spine of my Book in 2001. Everything seemed to be aligning and even “Happily Ever After” seemed attainable but my Crohn’s Disease wasn’t done making a mockery of my plans.

Several Surgeries and costly Medical Problems related to my Crohn’s Disease  soon forced me to abandon Los Angeles, CA for New Jersey and with the Passive Income Deals not yet working out as planned the financial pressure was enormous. I borrowed money from Friends to stay afloat but the cruel cycle of expensive Medical/Surgical Problems rendering me unable to Work followed by the arrival of the actual Medical Bills packed a double-whammy of a punch and no matter how much I borrowed I could not stay ahead of the Medical Costs. This is where my Mom stepped up and took me in and made me feel as welcome as only a Mom can – even in New Jersey. But what we thought were Finite Medical Problems turned into Side Effects and Serious Complications and my Future, now at 48 years of age in 2011, for the first time was seriously in question. However, my Book continues to Sell as an “Evergreen” Title and the Reviews from Patients, their Families and Medical Professional alike are incredible and that fueled my desire to get active in Health Care Social Media. When I have been able to Record a Podcast, I have done so and I have expansion plans for my On-Line Presence but these plans require me to be reliably Healthy which has NOT been possible over the past 6 months. In fact, my Body has been so unreliable that making a Daily “To-Do” list is as useful as thinking Alyssa Milano will accidentally stop my Mom’s House looking for me shouting, “Where have you been all my Life?”

Where are all my Friends through this? They are living their Lives and doing what people should be doing. They have been, and continue to be, Fantastically Supportive of me in every way possible but my Chronic Illness should not derail the Lives in any way, shape or form. We aren’t growing apart it’s just that they have their Life Partners and Children and I have my present “Companion” except I can’t take mine to dinner on Saturday Night and as far as I know, Crohn’s Disease isn’t a big fan of Vacations either. Recently, I have also had to turn down several Media Appearances resulting from my Book’s popularity or from a Podcast Video simply because these debilitating Respiratory Problems have made me unreliable and until I can be consistent (and thus professional) I don’t want to affect my reputation or damage someone else’s just because I gave them my word but couldn’t live up to it because of my Health. Despite being a successful Author, I have also made a conscious decision to not get involved with a Woman even though I’m sure there is a line around the Block as we speak of smart, funny, warm and sexy women trying to just get a look at me now that I live at home with my Mom at 48 years of age, have tremendous medical debt and am on a regime of Prednisone that will soon make me look like Jerry Lewis when, as it is my understanding, he had to take such large doses to treat some type of serious inflammatory problem that his Face got terribly distorted by the retention of water caused by the drug. For a while, I thought about telling women that Bernie Madoff stole my Millions of Dollars and that’s why I had to move in with my Mom but I’m not embarrassed by my situation. It is, what it is, and how I “get off the canvass” will determine the kind of Man I truly am. And in all seriousness, I want One (1) Female Partner and I miss that special “affection” that is the benefit of dedicating yourself to one person but I can’t bring someone else into this presently challenging situation until I am Healthy and can somehow carve out some type of a lifestyle no matter the amount of my Book Royalty from my present Book or the Book I will hopefully soon get to write.

This is where I am at in May, 2011. Most of my adult life I have been praised for having great resiliency and fortitude in fighting Crohn’s Disease but Life can’t just be about “fighting simply for the purposes of staving off devastation.” I’ve seen “devastation” and no matter how bad it seems, it can always get worse. That “toughness” of “staving off devastation” might sound cool in an Obituary but in reality all you are doing is healing in bed and watching every “Law & Order” episode ever made. I love that Show but after a while, even that’s tough. I’m sure I will get through this extremely rough patch with these Respiratory Problems but I miss my Friends and I miss the version of “Me” that is pictured above. There’s no answer or guaranty to the “Happily Ever After” aspiration and all I can do is keep fighting as that is the Journey of Life. The Support that’s been given to me in so many different ways by so many different people in my Life and the communications about how my Book has touched so many lives has me convinced that a Miracle is right around the corner for me and in six (6) months or so you likely will be reading the diatribes of the world’s happiest man or you may be seeing me on TV – hopefully not jumping on a Couch like Tom Cruise!

At 48, I only focus on what I CAN DO and therefore I think my contributions about Coping with Chronic Illness are what my Life has stood for and it is NOW when I must heed my own Advice. Instead of “When I was 48,” I plan on rewriting that Song to Celebrate how my Life rebounded after many years of hardship. It seems bleak at times as the Medical, Financial, Social and Emotional issues associated with my battles with Crohn’s Disease continue to challenge my Resiliency but just when I get overwhelmed I marvel at the lengths people go to help me or to make me feel that “everything is going to be okay.” I don’t own a Home or have money in the Bank and my Job Prospects other than writing about Health-care are likely slim in the future despite have a Law Degree and an MBA but I’d like to think I am the Physical embodiment of Hope and as I continue to “Fight the Good Fight” and with the help of “Health Care Social Media” my “Story” might become even more helpful to many more people around the World facing similar or worse predicaments. Stay tuned.