“Intimacy” is generally defined as “a close, familiar, and usually affectionate or loving personal relationship with another person or group.” Many people automatically attach “sex” to intimacy much like they always have their burgers with fries and bagels with their ritualistic Sunday newspapers and that’s the problem with understanding intimacy. For, being intimate with another person, is simply to bare one’s soul and take the chance that by letting them see you, as you do, that they will accept and like you. Ideally, the more “You” they get to know, the more they want to be around you, and vice versa. That’s what’s so cool about being intimate with another human being as we learn that no one is perfect yet it is each person’s “imperfections” which makes them “perfect for us.” It is that moment in time you will never forget when you “let it all hang out,” i.e., physically, mentally and emotionally, to discover that the bond between the two (2) of you is based deep down in your souls and not on status, body parts or some underlying agenda. Sure, the downside is “rejection” but as we mature we realize that taking the chance of establishing just one (1) intimate relationship and rejoicing in its rewards makes up for any number of rejections.
This is why I side with the Poet, Alfred Lord Tennyson, when he wrote, “’Tis better to have loved and lost than never to have loved at all.” But what would good ol’ Alfred the Poet have to say about the folks with chronic illnesses whose imperfections typically fall outside any degree of cuteness and could mean a life of struggle on almost every conceivable level, i.e., medical, financial, emotional and mental? Moreover, when do we introduce our physical or mental differences into the “getting to know you phase” without overwhelming the other person? How much do we disclose and when? Is it different for casual and romantic relationships? What about the workplace? Where is that benchmark line, which just before you cross it would indicate that, in my case, for example, Crohn’s Disease is just another character attribute I have just like a great sense of humor? Whereas crossing this imaginary benchmark line would sound something like this in the middle of a hopefully soon-to-be intimate Sunday Brunch: “Before we go any further, I must let you know that I have Crohn’s Disease and as a result I may suddenly jump up from the brunch table to visit one of the 13 bathrooms located within .3 miles of this restaurant. Wow, that feels better, how do you like your halibut w/truffle sauce?”
Not to single out NBA Basketball Hall of Famer Earvin “Magic” Johnson but in this regard I think he was on to something the day he held that famous Press Conference retiring from the National Basketball Association because he had acquired the “HIV Virus.” He mentioned “having acquired the HIV Virus” almost like a “material possession” as if he were referring to a list of his physical possessions as in: “I got me a Mercedes Benz, I got me one of those Cadillac Escalades and of course the Hummer H3T and now I got the HIV Virus.” I am not making fun of the manner in which Mr. Johnson speaks, but I was humored by the way he associated a very serious medical disease with just another “materialistic possession” he must deal with and it turned out to be the “possession” of highest priority. As a testament to the will and courage of Magic Johnson, he told the entire world of his HIV Virus and lost several years of his NBA Career which most likely would have earned him records that would never be broken. But more importantly, he beat the HIV Virus when no-one else was doing so. Yes, he had access to the greatest medical minds in the world and the money to pay for such treatment. Personally, though, I think he started winning his battle against the HIV Virus the day he announced it at that Press Conference because he was telling his body (and the world) that coping with and beating the HIV Virus was just another item on Magic Johnson’s daily “To Do” List. He was telling the world: “Just watch how I’m going to beat this sure death sentence and then you will learn all you need to know about the man, Ervin Magic Johnson.” I have learned enough about Magic Johnson to afford him great respect as he may have humored me with the manner in which he delivered that “HIV Virus” speech but it is he who is having the last laugh due to his discipline and hard work.
In my humble opinion, the lesson to be learned from Magic Johnson’s bout with the HIV Virus is that chronic illness is just a part of our beings and when you must convey that to a potential friend, lover or business partner, you should do so only to the extent you must, and even then, make sure your audience focuses on the right message. In Magic’s case, it was a message of redemption. His candor revealed that he was about to embark upon the fight of his life and the entire world was getting a front row seat. Now THAT is quite a Man. So, you see, Magic Johnson turned a situation which would have broken almost all lesser men into an intimate battle against the Grim Reaper and people around the world started rooting for him because of his infectious smile and exciting style of play. His accomplishments at that point in his stellar career had earned him an intimate relationship with NBA Fans around the world. Thus, achieving intimacy through candor and the best of intentions is a disarming positive tool that chronic illness also provides us with. Don’t be afraid to use it to massage the message of your chronic illness when necessary.
I have always chosen Humor to introduce my chronic illness into the equation but we must not forget that no-one in life gets away unscathed by the pitfalls of disease, bad genes, tainted judgment and sometimes just plain old bad luck. Therefore, my second piece of advice, based on my almost 30 years of living very active social and business lives with the auto-immune, incurable and chronic illness, Crohn’s Disease (with the 1st piece of advice being to absorb the manner in which Magic Johnson utilized his reputation for being candid and intimate with people all over the world when he introduced the HIV Virus into his life and did so with reverence for its potential lethal effects), is to assume that everyone has something wrong with them. No-one is perfect. It is the matching of imperfections which makes for longstanding relationships. As stated above, at a certain point in your life you realize that no-one is perfect so you look for those who are perfect for you, whether that is as a Friend, Lover, Support Group Member, etc. In fact, looking back on these relationships, we tend to remember these funny “imperfections” and how they made you appreciate and love the person more, because of them, and not less, in-spite of them. Thus, be confident about your chronic illness. Damn the torpedoes that you may get stifling cramps in your belly from your Crohn’s Disease or Ulcerative Colitis which may even cause a trip to the Emergency Room on that beautiful Sunday afternoon when you and she were renting that quaint cabin in the Adirondacks. As the ambulance is running red lights to get you and your weekend-busting belly to the Emergency Room, try to remember that your new beautiful friend snores so loudly that she is afraid to fall asleep before you when she sleeps over and it took you 6 months to figure this out because she is so paranoid about it! Everybody has something.
“When” do you introduce your chronic illness into the relationship? The answer is as easy as answering the question posed by your new friend when she asks, “By the way, I am doing some early Christmas Shopping and I want to get you something silly, what is your favorite color?” The answer is “blue” but please note that I would not obsess over when to tell her this fairly relevant fact about me until it came up in the natural course of conversation. The same can be said of your chronic illness. Granted, it may come up sooner and when it does try and answer that situation’s requirement with no more, or no less, information than is necessary. For example, if you must go for some routine testing for your chronic illness (e.g., a Barium Upper GI Series or a Colonoscopy) and as a result prefer to be alone for a few days afterwards due to the subsequent discomfort of the barium passing through your system, tell the other person that you have this chronic illness which requires annual testing and for a few days afterwards you feel uncomfortable and prefer to “sleep it off” on your couch watching NFL Football as it makes your bathroom habits unreliable and energy draining. As a result, you hope she understands and as soon as you get your strength back you will call her. If he or she pokes around for more information, make light of it and do not get into details about your surgeries, hospitalizations and medications. There will be time for that in the future. Remember, too much information too soon can forever taint the blossoming relationship as you do not get a Second Chance at a First Impression and why would you want to do that anyway when it isn’t necessary? When he or she probes, turn it back on them and ask them what they will be doing for the weekend. People like to talk about themselves and when you ask, they take that as a sign of interest. Deflect the light being shined on you and postpone its intended effects until you are less vulnerable to follow-up questions like when you are doing something physical feeling virile or are out with other people where you can make light of it.
A possible exception to my advice in this regard is when you are getting romantically serious with someone and your disability and/or inability to earn an income to merely support yourself becomes an issue. Personally, I don’t date when I am in such a “crisis state” because I don’t think it is fair to do that to someone else because at a certain age (I’m 48 and I think that “certain age” is 35+) we all have a reasonable right to know these kinds of things since at that point presumably we are dating for keeps. My advice then is to maintain your distance with this person until you are earning a living and can support at least yourself. But if you are asking that other person to remain loyal to you while your illness prevents you from financially supporting yourself, you might be adding financial pressure to the situation and that never ends well. Notwithstanding the foregoing, many of my closest friends criticize this approach as it is a lonely journey and there is nothing wrong with simply being friends with someone else even if that just turns out to be source of mutual support. I think that is a valid point and that’s why I am sharing it with you. But I find that when I am in “crisis” it is too tempting to “unload” my concerns on another friend, especially a new one, and since these serious Crohn’s Disease flare-ups come and go so unpredictably, I’d rather not spook them with the sudden change in circumstances and then face them alone and keep what was a potentially blossoming relationship as just that.
Putting aside the romantic aspect of intimacy, people with chronic illnesses require intimacy from their support group. That said, a patient seeking such support must also be prepared to “bare all” to ensure that his or her support team is appropriate. You can’t seek real intimacy without being willing to be open to it on your end. To that end, I have always found it quite surprising to see who shows up at the hospital when I am there for several weeks or who offers me assistance with the full meaning of their intentions. For example, I’ve had friends from New York fly up to Boston when I was hospitalized during law school just to hang out with me to make me feel normal. My roommate from college stops up nearly every day I am in the hospital and he knows me so well that he always shows up with the NY Post, a few Tuna Sandwiches from my favorite Deli in NYC and he won’t accept a dime from me. In fact, he is one of the few friends who have come out to see me this summer as I battle the Crohn’s Disease-induced Lung Disorder, “B.O.O.P,” and just hanging out with him and going for lunch and sharing a few laughs literally energizes me for weeks and makes me realize why I am staying positive about my plight and not waiving an inch in my resolve. What’s even more important to me is that I know he’s not coming out to see me to satisfy some obligatory feeling he has of making so many numbers of visits to see me in New Jersey. He truly wants to spend time with me and lift my spirits the same way I would want to do for him if he were the one with BOOP. We have an intimate friendship in which many things go unspoken because our respective actions speak for themselves.
Another close friend comes by just to stay for a few minutes, sometimes with his super-cool wife or dynamite son or daughter, making me feel as if I am still in his rotation of friends almost as if I were out of the hospital and he was in the neighborhood and just wanted to stop by. That may seem like a small innocuous gesture but it means SO MUCH TO ME as all I ever want to be thought of is “normal.” Then there are the people who call you constantly telling you how much they want to come by and they ask via text message, “when is a good time?” so you tell them, but they never seem to make it over. Then they text you the next day and you both go through the same routine. I know they care, I know they mean well and I am appreciative that they think of me but after a while I must stop responding to their texts. I will always be fond of these types of “friends” but by no means will we ever have an intimate relationship because if we did they would just know what to do or say in order to “make my day.” They do not, as evidenced by the Text Messages. I don’t fault them for that as I understand how much time and mutual respect goes into establishing intimacy with people. You can’t have it with everyone and if you did, it wouldn’t be so precious. This is especially true when you have a chronic illness because you simply don’t have the emotional capital to invest in relationships that are based on pity or on making the other person feel like they are doing a nice thing by communicating with you. Life is too short.
The long-term effects of intimacy are also fascinating as I was to learn as few years ago when, thanks to reconnecting through Facebook, I threw a get-together for old friends from where we all grew up and went to High School in Queens, NY. As the cost of my chronic illness has robbed me of practically every tangible possession or item of value in my Life, for the 3 hours of that get-together in some cool Bar in NYC which we had rented for the evening, you’d never know who wound up being the Philanthropist, Doctor, Engineer, Wall Street Wonder, Psychologist, Teacher, Insurance Salesperson or flat-out broke Crohn’s Disease Patient. It actually had the feel of picking sides in a pick-up basketball game at “the Park” as we used to call it in our teens. I was always somewhat of “Leader” or “Organizer” when we were kids and for this 3-hour informal event I was once again perceived the same way partly because I had also organized this event and also because for the most part these were people with whom I had intimate connections with going back to grade school and as a result nothing else mattered on that evening at this Bar in NYC. Well, advance the calendar forward to December of last year when my Crohn’s Disease was complicated by a matter which required yet another Surgery to remedy it and I was to soon find out in March/April, 2011 that the medications for my Crohn’s Disease caused my now completely debilitating Lung Disorder known by the acronym “BOOP,” my friends put together a NYC Benefit for me to help offset my seemingly insurmountable medical bills. Not only did the aforementioned old-neighborhood friends all “show up,” in one way or another, but people from high school showed up who I barley spent time with back in 1977, 1978 and 1979.
Perhaps my story lends itself to altruistic people doing what they do but I thought of the Paul Simon song when he “thinks back to all the crap he learned in High School” and I wondered what was so special about me that these people who I hadn’t seen in 30+ years either came out to show their support or donated money to me? More interestingly, was that as the donations came pouring in even after the December Event, I was more moved and inspired by the handwritten notes which accompanied the checks I received from these people. Evidently, these folks thought I was always a genuine person and many people apparently respected me from afar. That blew me away. These notes made me feel good about always being so authentic and honorable back in high school. I guess I was raised a certain way and I simply treated others the way I wanted to be treated. I was also almost tearfully touched when during the December Event a high school friend for whom I have great respect pulled me aside and told me that he shows his teenage son my heart-felt videos conveying my appreciation for these charitable gestures. He went on to add that he expressed to his son that THIS is why you help other people in need. I couldn’t believe it but I had become a Role Model of sorts to this man’s teenage son and that made me feel great. This was NOT a Pity-Party; it was a gathering of old friends trying to help someone from the neighborhood who had fallen on hard times. But it was fascinating who showed up and helped as opposed to who I figured would be there. Again, it doesn’t say anything bad about those who did not attend or donate but it sure says a great deal about those who attended with the intention of lifting my spirits.
That night, I couldn’t get the song “Kodachrome” by Singer/Songwriter Paul Simon off of my mind and kept thinking about these lyrics:
“If you took all the girls I knew
when I was single
and brought them all together
for one night
I know they’d never match
my sweet imagination”
It’s true, they did not match my sweet imagination, they, i.e., the friends who came out to support me, SURPASSED my imagination. These types of inspiring rewards only come with the establishment and development of intimate relationships.
Since a “Support Team” is crucial to managing (and coping with) a chronic illness, understanding and finding intimacy in a friend who you can include in that Support Team is as important as finding the right doctor for you. Self-proclaimed Macho guys like me and my college roommate may not speak the words of affection, at least while we are sober, but we “walk the walk” and what’s so cool about this is that our male counterparts “get it” because we communicate in code so that they we can never be caught expressing how we truly feel about one another. It’s hidden in jokes or remembrances that only we or our buddies recognize. I guess that isn’t that “Macho” after all. But in my intimate friends’ eyes, I know they are watching how I handle my predicament, especially now with the “B.O.O.P.,” because I can help a great many people by handling medical adversity in a productive and positive manner. The fact that they are watching me so closely is inspiring because I respect their opinion. “Anyone can handle success; it’s how they handle failure which ultimately will determine how successful they will be.” I don’t know who authored this “saying” but I’ve always thought it was one of the deepest “sayings” I’ve ever read because it puts the definition of “success,” and thus the meaning of the saying, in the eye of the beholder. As I’ve grown older, I have come to understand that life’s circumstances, more than anything else, determines the definition of “success” in one’s life. That is another of the positive aspects of being saddled with chronic illness because we get to understand this reality very early in life. You see, we learn shortly after diagnosis that the success understandably attributed to company promotions, many clients, big bank accounts, fancy vacations, 2nd and 3rd homes and a stable of fancy cars is negated by health problems, especially chronic health problems. What then?
“Shortly after diagnosis” can vary greatly for people with chronic illness. I think the older a person is when they learn that their health will never let them complete a reasonably challenging “To Do List” and that their “Minds are going to make Promises that their Bodies can’t keep,” the more “in denial” they could become about their chronic illness. But as Singer/Songwriter Bruce Springsteen wrote in the song, “Darkness on the Edge of Town,”
“Everybody’s got a secret, Sonny,
Something that they just can’t face,
Some folks spend their whole lives trying to keep it,
They carry it with them every step that they take.
Till some day they just cut it loose
Cut it loose or let it drag ’em down,
Where no one asks any questions,
or looks too long in your face,
In the darkness on the edge of town.”
I emphasized the last few lines because that is what Intimacy is about. When you get so tired of masking your fears that you let your guard down, it is only then when you find out who are your true friends. It doesn’t mean that that the others are bad people, it just means that there are certain friends you can to count on when you are sick and you should have no expectations from all the others. This may sound too “practical” or too direct for some folks but when you are hospitalized over 200 times over the past 25 years and you are 48 years of age there has not been much time for the expansion of “good-time buddies.” Somewhere along the way I trusted a few friends in seeing me the way I see myself and as frightening as that was at the time, I had no choice. Then whenever I was hospitalized or otherwise disabled for extended periods of time, these same few people would always be there for me. It was strange; I was 21 or so when I was first diagnosed with Crohn’s Disease and approximately 25 when we all realized that its “broad spectrum” characteristic was going to be lost on me like subtlety on Charlie Sheen and that I would be spending a great deal of time in hospitals; but when I witnessed the incredible self-less acts of friendship bestowed upon me I actually felt “lucky” that I had this kind of support behind me. It made me a better friend and more receptive to their problems. While my chronic illness had dramatically altered the path of my Life, I achieved a level of intimacy with my friends that I would never have come close to doing if I were a normal healthy individual. If quality of friendship were the currency in life, I’d be among the wealthiest men in the world. Nevertheless, I think the quality of friendships in one’s life is one of the most accurate measures of the man (or woman) so I wouldn’t change a thing about my chronic illness, that’s how much I have benefited from the intimate relationships I have built and developed with my friends and Support Team.
That said, I was “in denial” for a few years after the diagnosis of my Crohn’s Disease because it all seemed so unbelievable. How bad could a disease be which I had never heard about prior to eating flavored popcorn and passing out from the Obstructional pain in some random NYC corporate bathroom stall, or whose name I probably couldn’t spell correctly even if I were on a game show and would win $1M for doing so nor had I even seen it on a cheesy Family TV Show as the season-ending “Disease” cliff-hanger storyline? In fact, in order to “sober up” and face the diagnosed reality of my chronic illness, I had to stop hanging around with my closest friends because in our own ways we didn’t know how to process my illness. One night I’d be fine during a wild night out on the town and the next weekend I would have to cancel going to a close friend’s wedding because my Crohn’s Disease was flaring up and I couldn’t leave my house for the weekend. That Groom and I didn’t speak for 20+ years because of that incident but as I got older and our respective understandings of my situation matured, we thankfully reconciled. My college roommate and I had to stop speaking for a few years during this same time period because we had so much fun hanging out together that when I started to become unreliable and couldn’t party like I had on the past, it confused us and it was almost as if he didn’t believe me. In retrospect, I don’t blame him. What Crohn’s Disease Patient can still eat “White Castle” hamburgers and Onion Rings at 4 AM? Yodel’s for breakfast? We were both idiots but how could I expect my friends to take my chronic illness seriously when I didn’t? Thankfully, a few years later after chronic illness had given me clarity of vision that only it can when certain physical/mental abilities are compromised such that the power of perception is enhanced (another plus of chronic illness), I had come to grips with my new found limitations and my actions finally matched my words and most of the above friendships were patched up and I am proud to say that my Support Team is made up of male and female friendships many of which go back to Kindergarten, Summer Camp and College.
Children with Chronic Illnesses have a harder time with the instant realization that they will be “different” but they are born and raised with the logical belief that their better days lie ahead. This aids them greatly as they tackle the future and make decisions about friends, lovers, business colleagues and the like. It’s as if their chronic illness instills in them a bullshit detector which is one of the other extremely useful positive attributes of chronic illness. Just like kids marvel at how much smarter their parents become as they get older, so do they come to appreciate the skills of perception that come along with coping with a chronic illness from such an early age. The diagnosis may place them on slippery footing for a while and it may never stop making their parents feel that same way but it soon dissipates for the child and the result is a mature young adult who has as good an understanding one can have about life, fate, happiness and success. But if they do not seize the opportunity to grow from the diagnosis, they risk wallowing in their fate and then they may take several steps back before they move forward.
In summary, chronic illness and intimacy will forever be linked as integral components to a successful coping strategy for managing chronic illnesses of every kind. They require a Magic Johnson-like perspective with disciplined details told at the right time in response to the right questions. Surely, the chronically ill person is not perfect but nor is the person with whom he or she is seeking an intimate relationship. In fact, it is the imperfections which attract and cement the most intimate of relationships. Intimacy is to be treasured as it will become the foundation of every Support Team relationship and it is never too early to use candor to seek intimate relationships as the feeling of rejection in that pursuit is completely outweighed and surpassed by succeeding in becoming intimate with another person. In other words, “’Tis better to have loved and lost than never to have loved at all” for being “Intimate” is simply to bare one’s soul to another and take the chance that by letting them see you, as you do, that they will accept and like you. Ideally, the more “You” they get to know, the more they want to be around you, and vice versa. Don’t overwhelm the other person with too much information too soon and remember that you do not get a Second Chance at a First Impression. If you follow these guidelines in seeking intimacy with chronic illness, you will experience one of the few benefits of never-ending doctor bills, hospital visits, medications, surgeries, etc. That is, intimate and quality friendships which, once you find them, will never again cause you to view your chronic illness as an obstacle in this regard.