With 2011 “Father’s Day” having come and gone and with it the obligatory and often uncomfortable Family “Gatherings” that should be full of joy and catching up but yet slowly become transformed into a game of: “Who’s Winning so far in this Game called Life?” or “You have the Big Job but I’m my own Boss but then again I can go to my three (3) vacation homes anytime I want while you can only go to your beautiful California Wine Country Estate at certain times of the year. We need to decide this before the Watermelon is served, any ideas?”
I am sure this is NOT true in all Family Gatherings but I would bet that some form of this competitive nature is present in most. And I mean that from the quality of the barbecue selections to the casual verbal slip of vacation plans, plastic surgeries, expensive private kindergarten schools, college options and new major financial acquisitions. Normally, this would be of no consequence to me because I’m a logical person who refuses to get caught up in that and, more importantly, I love my family and cut them the great amount of slack I hope they cut me whenever something hurtful, thoughtless or insensitive results from these Family Gatherings. But, when you have a Chronic Illness and are currently “in crisis” and probably on a high dosage of medically-necessary mood-altering drugs (e.g., Prednisone), you tend to have thinner skin, possibly require more attention and then, before you know it, a confluence of events unfolds and happy family occasions turn into Story Plot lines for the Worldwide Wrestling Federation (“WWF”) TV Shows. I wish that weren’t true but we are mere mortals and believe that our families are our last refuge of Unconditional Love, yet sadly, that’s not always the case just like when we grew up thinking those “Lucha Libre” Wrestling TV Shows were real.
But having lived 48 years on this planet, I have come to learn that the phrase “Unconditional Love” is what taught attorneys that “the devil’s in the details” and economists that “there is no such thing as a free lunch.” Yes, I do have several loving relatives who would “move mountains” to help me (and I for them) and they have done extraordinary things on my behalf such that I never have to worry about their compassion, support and understanding. But there are other instances and familial relationships that are not at all what they appear to be in terms of Unconditional Love. As a result, they conjure up a unique Emotional mix of Sadness and Anger in the family member with the Chronic Illness such that he or she is made to feel like a failure in the eyes of these other more fortunate, healthy and otherwise blessed family members. Again, when a chronically ill patient is “in crisis” and likely on medically-necessary mood altering medications, there is a greater sensitivity to being “judged” like this but when you are made to feel that some of those closest to you have “given up on you” when you are all but 48 years of age, only the unprecedented level of your anger and rage can hold back the tears of sadness and disappointment.
I don’t understand how people who have been blessed with good health, good luck and an aversion to multiple personal and/or professional disasters can have an educated opinion on seriously chronically ill people who have fought increasingly devastating and expensive disabilities for many years. Thankfully, however, we chronically ill people have so much to worry about simply to get through the day that even addressing this type of emotional situation is non-productive, negative in every sense of the word and thus a complete waste of time. Making “cold” decisions like this is difficult, especially when it comes to “removing” certain people you Love from your Life. But when you do battle with an incurable and auto-immune chronic illness like Crohn’s Disease, just by way of example, you need to most efficiently collect and then marshal all of your energy and positive thinking into focusing on survival and then hopefully on future opportunities that will help move your Life forward. A very wise friend of mind refers to this day-to-day “Life Coping Process” as trying to continually “kick the Can down the street” even if only a few inches for that is progress. This friend always gave me this kind of “practical” advice as he knew that would be most useful to me. Well, he recently was diagnosed with a challenging potentially lethal Disease and is battling it as I write this. I am sure he will take his own advice but just in case I call often to remind him. In any event, I would never wish these fortunate family members ill-will and I am genuinely happy for them that they “got theirs” but they clearly are not at all in tune with the harsher realities of Life and how “the best laid plans….” Accordingly, I’d like to think that’s because they don’t know any better because I prefer to be sad than angry about them “giving up on me.” Some would say this is a rationalization on my part, and perhaps that’s true, but it’s one which is non-judgmental and helps me move forward without anger or resentment toward them.
Since it was just Father’s Day, it is appropriate to interject a Life-Changing lesson I learned from my Dad who passed away in early February, 2008. He was an old fashioned kind of a guy and his biggest “fault” in Life was that he loved my Mom, to whom he was married to for 53 years, possibly too much. Sure, he loved me and my sisters and was a great Dad but at the end of the day it was my Mom who brought him his happiness. I always admired how sure he was of his Love for my Mom but I also did wonder if that came at some price in terms of not really developing other close relationships with Male Friends, for example. But it somehow worked for them and for quite a long time, so, what do I know! Towards the latter part of my Dad’s life, however, he started to get sick and experience all sorts of medical problems involving so many different body parts that a 2-hour discussion with him could serve as “Continuing Education” in Anatomy for Medical Professionals! First he got hit with Cancer then with several Heart Bypass Surgeries and he soon thereafter had to face Lung/Breathing issues related to the Cancer Chemotherapy and Radiation. After making it through all of that, his Cancer came back and he fought his way through that challenge too. At one point, he also had to have his Knees replaced and I recall he had such a great sense of humor about that type of “relative” minor surgery that he once described himself to me as if writing the text for an advertisement seeking a Lost Dog who has all of these medical problems yet ironically answers to the name, “Lucky.”
All joking aside, my Dad was a tough son of a gun and dealt with whatever he had to do in order to be able to eventually recover so he could sit across the dinner table holding my Mom’s hand while on some romantic European Cruise vacation. That’s how simple Life and Happiness was to him. That’s also how smart my Dad was since most people travel through Life seeking happiness yet he found it 50+ years ago and never took his eye off the Ball. However, the medical problems soon got even worse and hit him more frequently and they literally affected his ability to “keep up” with my Mom. She never minded this change in my Dad because she loved taking care of him but his old-fashioned macho roots allowed the persistent medical problems to often change his personality and normally positive outlook on Life. Who could blame him with all he had to deal with? Although, I had the most unique perspective about my Dad’s health primarily because of the simultaneous increasingly pervasive damage caused by my Crohn’s Disease. I wasn’t happy about this Disease hospitalizing me over and over again but I didn’t want to become “Angry” about it because I was afraid it would alienate me amongst my Friends.
With my Dad, I could see he was getting Angry at his Fate because it was taking him away from my Mom and thus “his eye off the Ball.” While I TOTALLY UNDERSTOOD his frustration, I thought he was making a mistake by giving into such a strong and potentially isolating emotion because my Mom loved him so much that it didn’t matter to her. His anger eventually made him appear as a bitter man at times to those who never knew him but beneath it all I knew he was always the funny, loving Dad who I was proud to call my Father. Some Fathers teach their sons lessons by showing them “what to do,” but I believe my Father taught me how to handle my Crohn’s Disease by, ironically, showing me “what NOT to do.” A “Ralph Kramden” method, perhaps, but my Dad was very funny and would never admit when he was wrong and thus I firmly believe that I learned not to get angry at my Fate because of the way in which my Dad handled his overwhelming amount of medical challenges. There’s simply no upside to getting angry about things you cannot control and I am sure my Dad would tell me that if he were here today.
Additionally, the week before Father’s Day, I got involved in an enjoyable chat on Twitter with a fellow sufferer of Crohn’s Disease and he was in a “down” mood and venting a bit about his inability to control what the Disease is doing to his life, business and children. With the exception of the children part since I don’t have any, I have initiated the same exact conversation with him on several other occasions. In that way, Twitter is the perfect Life Venting Tool because you can vent and interact with others without leaving the comfort of your bedroom. He always seemed like a very kind and smart man so I enjoyed our “conversations.” But this time when he started lamenting about helplessly watching his business fall apart as he struggled with the many extremely difficult and debilitating symptoms of Crohn’s Disease and the medications used to treat it, I had to share with him a dose of tough “love” that has been tossed in my direction on an occasion or two.
I told him that his business is irrelevant because all his children will remember will be HOW he handled his Disease. They won’t care about not getting some electronic gadget for Christmas but they will remember that in spite of the pain and frustration of not being able to maximize what he perceived to be the quality of his children’s lives because of a Disease he was unlucky to acquire, he nevertheless pursued and demonstrated to them that the measure and makeup of a person is not what he or she attains in Life but HOW they live their lives, HOW they treat other people and HOW they do this in the good, bad, sad and happy times. After all, success is easy to handle and thus it is often postulated that how a person handles failure or adversity might be the best indicator of just how successful he or she will ultimate become. I made him think.
There are also worse things in Life than having to live with such a pervasive and painful condition such as Crohn’s Disease. For example, this past summer during a long hospitalization I met a very cool and cheerful guy who appeared to be approximately my age (I was 47 at the time). I befriended him after having seen him through his hospital room doorway passionately watching some baseball game on his TV as I walked around the hospital floor trying to recuperate from surgery. One day out of sheer boredom, I gently knocked on his open hospital room door and asked if he would mind if I came in to pass the time talking sports since he seemed to be an avid sports fan. He could not have been more hospitable or happier that I asked and that began a few days of me dropping by to casually and lightly chat. But after having initiated this “relationship” via a few days of stopping by HIS room, I asked my Nurse how come he never came by my room? Protecting Patient Confidentiality, she told me to ask him. So, in a polite but jokingly fashion to keep it “light,” I went to his hospital room one afternoon when I knew we were both safe from being dragged down for more diagnostic tests and I started another sports conversation and then I asked. He told me that at 21 years of age he was in a Motorcycle Accident and for the past 20 years or so has since been paralyzed from the SHOULDERS DOWN with exception of limited use of his arms.
I’m sure he had (and has) his depressing days but each time we spoke he was upbeat about his full-time insurance job and the various sales commission touchstones he was meeting. Naturally, I listened to his stories and watched him try to maneuver his body around his hospital bed by using a metal bar that hung from the ceiling but I was more in awe of his ability to simply “carry on” after having had a 21-year taste of walking, independence and all the perks that came with good health only to wind up with 20 subsequent years of only being able to move his arms and face. While he clearly maintains an independent lifestyle, he is surely dependent on Doctors, Nurses, Family Members, Friends, etc. for the most basic of Life’s necessities. I wondered if I could do that. Would I want to continue living knowing that I would never reach the “Potential” forecast for me as an Attorney/MBA and personable man of honorable intentions and vast personal and professional relationships? How would I accept the probable finality of knowing that I’d never again have a cool, spontaneous and passionate encounter with a beautiful woman? What about playing golf with buddies? This brave man’s life is much different than mine and anyone I know and I hope he finds this Blog Post and drops me a line because I never got to say goodbye when I let that Hospital and I would very much like to keep in touch. I not only enjoyed his company but I can learn a great deal from someone with his perspective and I imagine he might say the same about me.
There are people living with other difficult Life situations yet we don’t hear much about them. Some accept their fate and decide to live unhappy lives and can’t wait until their “ticket is punched.” Others realize what I tried to convey to my Twitter Buddy above and they “keep on keepin’ on” because they understand that people are counting on them to be strong, smiling and inspiring. It is certainly the most difficult thing to do but, for me, I just think of any young athlete committed to a wheelchair for the rest of his or her Life and I suddenly become THANKFUL for the INCREDIBLE Family Members and Close Friends who do support and understand me. To live any other way would be to disappoint them and in the process make it impossible for me to look in the mirror.
In that regard, I am currently in a bad spot but it is important to me that I am able to look in the mirror and know that I am always fighting. I have a serious Lung Disorder which seems to be a cumulative side effect of some of the Crohn’s Disease Medications I was prescribed for a few years (i.e., the “Anti-TNF Agent Drugs”). The staggering cost of my Medical Care (regardless of the number of Books I sell!!) has forced me to move in with my 76-year old Mom who had much different plans for her Golden Years but instead she demonstrates her Unconditional Love for me 24/7, 365 days a year. I have Soul Mate-type Friends who respect me and my tenacity and who have helped me through so many difficult times yet I don’t know if my Lung Disorder will get better or worse or if it will kill me. The Doctors think that a Very High Daily Dose of Prednisone for approximately one (1) year should cure the Lung Disorder (or at the very least open up my Breathing Passageways so that I can resume somewhat of a normal Life) but I could also still have substantial Lung problems from the Healing Scar tissue. Then there are the Crohn’s Disease issues regarding the available treatments for future severe Flare-ups. More specifically, what medications do my Physicians prescribe now that I cannot take these “Ant-TNF Agent” Drugs like Remicade, Humira and Cimzia which are currently the “cutting-edge” medication treatments for severe cases of Crohn’s Disease like mine? (Please understand that these Anti-TNF Agent Drugs literally work miracles for many Crohn’s Disease Patients and each worked extremely well for me for extended periods of time but then they were “rejected” by my body in a variety of painful ways.)
I always find it helpful to compare my approach to battling my chronic disease to those methods used by other people faced with similar medical challenges. The advent of Health Care Social Media (“HCSM”) has made this possible almost instantaneously via different Social Media Platforms. To that end, another Twitter friend contacted me this past week when she was in full-blown crisis mode (and stated that she was Suicidal) and asked me what to do because she needed a certain Crohn’s Disease drug but could not afford it and she shared her frustration that her Crohn’s Disease had been ruining her Life for too many years. I told her first and foremost to contact her Psychiatrist ASAP (as she had mentioned she was under the care of one) then I wrote the following: “the longer you live, the longer you live.” I meant that the longer she fights to survive, the greater the possibility that some new Crohn’s Disease drug will be discovered which could change her Life dramatically for the better. She soon tweeted me back that she had seen her Psychiatrist and thanked me for my helpful perspective. Her Psychiatrist also tweeted me echoing the same kind sentiments. While I wrote the above to help her, it also helped me gain perspective. So, again, it seems to be about “HOW” she chose to live her life (at least at that moment) and the temporary relaxation she attained from reading my words and, more likely, listening to the words from her Psychiatrist, gave her much to do and think about. This took her mind off of the negative thoughts she had expressed to me and I hope she has found a way to continue down this more positive path.
In my case, and I strongly recommend this to others battling chronic illness, I must forget about any unfulfilled potential and focus on getting healthy and then hopefully being able to pursue new personal and professional opportunities. As for people’s expectations of my pre-chronic illness potential and me not having fulfilled it, that “train has left the station” long ago and family member or not, I must move on to more positive thinkers. So, I’m gonna keep writing about coping with chronic illness, when I am healthy enough to do so, and hope that by conveying my experiences I help other people around the world summon up the courage and energy to continue their respective fights for survival and hope. Personally, that means good/improved health, being able to again work and exercise, maybe another Book deal but this time with Audio versions in numerous countries and in several different languages! But most important of all, I envision Smiles on the faces of the family and friends who did not give up on me. You see, for those who truly care about me, and I only assume this because it is why I care so much about them, it was, and is, never about “Potential.” It’s about “Will” and the “Measure of the Man” and how they’d respond when their backs were against the wall for 25-30 years with a very expensive chronic illness which caused over 200 hospitalizations and now almost 20 Surgeries and a possible lethal Lung Disorder. Would they fold? Can they be broken by an enemy they cannot see? I think NOT and THAT is why I Love and Respect them as Family and as Friends. They need not be identified by name because they all know who they are. These are the kinds of people I want and need in my Life so I can focus on the battle at hand and I love them for being there. Anybody or anything else is of no concern to me now.
