My LIFE begins

Here I am. It's Monday. I have been on bed rest for the past 16 days. It is one of those rare perfect New England days. We only get a handful of em' in these parts. If you live in New England you know exactly what I'm talking about. Today is filled with bright clear skies, dry crisp air and a palpable energy in the air. It's something that can not be described with words but something that you can feel. It's like the joy in the simplicity of being alive, to feel LIFE. It's a perfect day. And for me it is also served as a brilliant reminder. You see for the past 16 days I have been on bed rest. Let me explain.

The story begins in 1993. I was your average 16 year old engrossed with a fairly carefree adolescent life. You know, all the normal things. For example, girls, getting my drivers license, what I am going to do with my weekend, getting the hell out of high school, girls (did I say that already). Oh yeah and of course always being told what is best for me from various authority figures. When your 16 you know everything anyway, so I was quite efficient with ignoring suggestions of my elders. Yeah it was all good, relatively speaking. I mean a lot of my friends came from broken families who rarely got any quality time with their parents. This is something I took for granted as a teenager but quickly appreciated when I entered college. I came from a loving family and have fond memories of my parents spending lots of time with me. At times I found some of their parenting tactics a bit overwhelming, but I suppose this is also normal in the mind of a child.

I am just about to celebrate my 17th birthday. The weather is similar to how I recently described, near perfect! I am high on life enjoying my freedom from any qualifying grown up responsibility. I have just returned home from spending time with friends after school and I'm not talking about the French club here. I was a bit rebellious in my youth, actually I still am to some degree. I enjoyed a severe displeasure for high school and everything that was associated to it. I never attended any traditional high school events like football games, rallies, or prom for that matter. It was the time of Kurt Cobain and the rise of Pearl Jam. It was the time of censorship on musical expression and gangster rap. It was the time of what my dad likes to call my potato sack pants (huge baggy pants with wide bottoms that hide your feet). Raving was popular and so was all the culture it embodied. While I would never deem myself a full on club kid, I did hang with people who enjoyed its way of life. As a subset to this culture I discovered many things that were way outside the box of what good little Jewish boys who grow up in middle class white suburban neighborhoods should do. Amongst them was something that would change my life forever, graffiti art. I could fill volumes on the topic of graffiti art and its culture and maybe at some point I will. After all it has played a dominating role in shaping my life beginning with the turn of my 17th birthday.

I would wake up in the morning get out of bed highly congested and begin my morning ritual. This usually involved a quick shower, styling my hair (yes I once had hair and I was quite vain about it), sorting out my wardrobe (I always had to wear the best sneakers) and grabbing some breakfast. A typical morning consisted of some sort of cold cereal like Cinnamon Toast Crunch or Kellog's Corn Pops swimming in Garelick Farms 2% cow's milk. Along with my Sara Lee bagel smeared with margarine and flavored high fructose corn syrup or what they called jelly. You get the idea, I hope! If you don't that will be another conversation. The best part was getting to school if I actually got there in time and hitting the caf for a package of Hostess donut gems. Needless to say this was all I knew at the time. I just thought everybody else is eating that so I guess that is what I eat too.Time prevailed and what I perceived as normal morning congestion and intermittent bowel movements was the regular. One day while I was in the loo I noticed something unusual. I wasn't quite sure but it didn't look normal. So I ignored it and didn't mention it to my parents. Within a matter of days what I perceived as unusual was quickly confirmed.

I mentioned to my parents that I thought I saw blood in the toilet. As any caring parent would do, they became deeply concerned. We made an appointment with the head of the GI (gastroenterology) dept. at our local hospital. My parents and I both felt confident that we were seeing the "best". So no problem, we'll just go check it out, its probably nothing anyway. They squeeze us in for an appointment and I arrive reluctantly. We talk to the doctor for a while and he believes I show symptoms of something called Ulcerative Proctitis. He suggests I go on medication to alleviate any bleeding from the colon. Sounds good to me! Or so I thought. The drug he wrote a prescription for was called sulfasalazine. It is designed to reduce inflammation of the large intestine. On the car ride home my mother became hysterical from the news. I on the other hand did not really think much of it. I figure I take the drugs it goes way end of story, right? As a 16 year old who has all the answers I have never been more wrong in my life. In a matter of days I was running to the loo anywhere from 12-20 times a day. I could not digest anything. My skin turned gray. I became very weak and could barely get out of bed. I lost 20 pounds and had a severe allergic reaction to the sulfasalzine to boot! I was lying in bed with a 103 temperature, weak, confused, sweating, hallucinating and with gut wrenching pain. And this was only the beginning.

Does this sound familiar? If you suffer from UC or Crohn's you probably have a similar story, just with a little bit of your own twist. I could fill volumes on the symptoms I endured from the Colitis (later it was confirmed that most of my intestine was infected) and the side effects of every possible pharmaceutical cocktail I agreed to take in periods of active disease. I could tell you all about the 3 lengthy hospital stays that I encountered in the first few years of my experience with this disease and how I became traumatized by these stays. I could tell you about the mental programming that unfolds from the medical community and the media with people who suffer ANY life threatening or chronic illness, but that is not my real interest.

From the time I was first diagnosed with this illness at age 17 I realized that UC has been a great gift. Regardless that I am 32 years old now and am currently in a struggle with an acute flare. The past several months (8 months or so) I was sure that my health was finally in check. I was off all meds, was in the best physical shape of my life, and my mind felt as sharp as a razor blade. One thing that I have learned on this journey is that if you think you have done everything, you have done nothing! This became clearly evident when just a month ago or so I discovered the Specific Carbohydrate Diet. I am currently experimenting with this and will keep you posted on my experience. By my own choosing, since I have been diagnosed with this disease, I have always been very conscious about what I put into my body. Needless to say I didn't freak out when I learned that I would not be able to eat many popular foods from today's modern diet (which is actually a good thing). I see it like the last 15 years of dietary consideration was just training for the Specific Carbohydrate Diet.

So that is what I am taking away from this bout of colitis. No matter how much you feel like shit, there is always room to learn more, even if you have been fortunate to have found something that works well for you. The journey does not end there. Quantum Physics suggests that we create our own reality. If you feel miserable and continue to talk about how miserable you feel then you continue to feed the thread of misery. So rather than focusing all of your mental energy on disease by shifting your attention to health and healing you create a profoundly different result. Our emotions are a powerful force to our health and especially our healing. If you are doubtful that you will ever heal, well I am sorry I have some disappointing news for you, you won't. I was convinced by this when I was 20 and a doctor told me that I will have to live on medication for the rest of my life or have a surgery. While I know some people have had great results with surgery and some people are o.k. living on meds, that's not for me. I haven't found the solution yet but I don't give up and I keeping moving forward exploring, experimenting, searching for the right combination. After all this is my life and its worth it, and so are you.