Can you manage Crohn’s alone? Can you hide in plain sight without the support of family, friends and doctors? Can you ‘grin and bear it’? Can you tough it out? Outlast it? Can you do that year in and year out? The short answer is no. I tried and it almost killed me. Others have suffered such a fate so learn from them. The full explanation to these questions requires some thought and everyone will have their own ways of answering them. You can almost certainly endure a few years of Crohn’s alone, I did it from ages like 12/13 to 18, but eventually you will be cut down. Unfortunately, that’s the reality of Crohn’s, go read the natural history studies. Those natural history studies are very useful but they wont tell you how miserable you will be if you go at it alone. I will. Once Crohn’s rears its ugly head, you’ll turn anywhere for support. Letting my intrinsic support system (parents, siblings, aunts/uncles etc) into my weird world was a huge step but made me realize how crippling the isolation was. This being said there are things I don’t, and likely never will, divulge about the weight of living with Crohn’s. I guess I don’t know how to really explain it but if you’re a patient you probably know what I mean. This being said, I think everyone is a little different in how they learn to deal with their illnesses. Now I’m sure there’s a large body of literature that says we fit into a few archetypes [you psych people reading this have likely analyzed/categorized me already :)] but even within these groups I’m certain there will be variation.
Many would consider my vast support system more like a small army, there are a lot of us so I’ll get this out of the way now. I have nine siblings (5 boys including me, 5 girls), one grandmother still with us, 18 aunts and uncles, twenty nine first cousins (I think), 4 nieces and nephews and 2 brother in laws. We’re moderately normal people, and yes we get stared at like a museum exhibit. Today I am going to discuss the people that taught me toughness, my brothers: the Don, the Freak, Philly Red and Boris. I’m a nickname person with a knack for giving names that annoy people, I get it from my dad. One quick message to my brothers: I am (and always will be) the fastest runner, the best tennis player and the fastest swimmer in the family. Those facts are proven almost every summer during our modified Olympic competitions.
So getting serious here, I feel like writing this is a no win situation for me but most people don’t have as awesome of support system as I do so this is for them. I dont think I’m articulate enough to convey my feelings very well and I know if I read this post tomorrow I won’t be satisfied with it. Defining clear examples of lessons learned from people you have grown up with is actually tougher then it seems. They’re things that are imbued in your being so it took me a while to actually put pen to paper on this one. Here we go.
Lessons from the bros
1. Learn to live
My brothers live life. They’d rather be hiking, camping, going to concerts, road tripping, travelling, lifting weights (except the lazy Freak), reading, writing, working outside, playing sports, competing, partying and helping others than just about anything else. You won’t find these guys hanging out playing video games all day or shopping for the latest GQ accessory, thanks mom and dad for raising us this way! They have that appropriate amount of (some would say too much) “okay let’s stop what we’re doing and enjoy the beauty and fun in life” kind of attitude. I’m probably the most rigid (aka least fun some would say) out of the group but that’s why I’m lucky to have them! I actually know it’s product of Crohn’s. I was the kid who in high school whose mom would have to force to go out and socialize. Those years were full of pain analogous to sharpened pencils being pushed from my insides out, always worrying of where the bathrooms were, wondering what to eat and planning/preparing for an accident. If you have IBD you can relate. All that made me slightly rigid some folks would say, I don’t care.
Having a schedule is great, but a routine of circumstance is never fun. What I mean here is that as a patient with Crohn’s I didn’t pick it or enjoy planning my routines, it was the result of suffocating flares. At times being so insulated in pain and walled off from others made me forget what it was to live. My brothers example taught me to fight the feelings of loneliness, monotony and despair with whatever you have. Do not let a flare dictate your life. Do not spend your day curled up in bed. I know it hurts, I know you can’t eat, I know what it’s like to run to the bathroom 20 plus times a day and have blood non-stop. I did this for years, and my brothers showed me the value of stopping to take time to feel alive. During a flare taking a walk, sitting outside, siting in my rec centers sauna help me break the crippling monotony of hammering pain. Do these activities for their own end and for yourself. You don’t need to tweet about it or facebook status it or blog about it. Its your time to forget whats going on even for a few minutes. It won’t make the pain go away and it may suck sitting there or walking but it is a small ounce of control you have over Crohn’s. Having the feeling of being alive, if only for a few minutes, is vital.
2. Foster your interests
My brothers are all really bright guys. They’re the type of people who could say I want to be X and then have the ability to actually go do it. I respect and learn from every single one of them. They inspire me, and spending time talking and arguing with them has taught me something school won’t tell you. It’s that “interested people are interesting”. What do I mean by this? You do not need an undergraduate or advanced degree to be well educated and have the ability to carry on an intelligent conversation. What you need is to develop some interests that you are passionate about and then go read. When you think you’ve got a good grip on a subject…. keep reading. My brothers are voracious readers and their example, yes even my younger brothers, has taught me to use flares wisely. I am so thankful that while Crohn’s can cripple my body to the point where I cannot walk, it won’t touch my mind. My thoughts and interests are mine to keep. Many people with other diseases are not as fortunate. So go think about what you like and then start reading about in ways that allow you to be actually educated. Now if your interests are TV shows, or the internet or shopping that’s great but don’t just go out and watch TV shows or spend all your money and tell me you’re fostering your interest. If only it were that easy! Learn about the history or cultural influences that dictate what is on TV, the internet and shopping. Read books like The Call of the Mall if you’re a shopper. Learn about internet censorship throughout the world, how internet activity relates to society and culture etc. This is what I mean by fostering an interest. This all started when my older brother made me read The Narrative and Life Story of Frederick Douglas in high school. That book will give you an appreciation of both your education and also the fact that Crohn’s avoids the mind. My appreciation of art, literature, business, economics, psychology and current affairs is attributable to my brothers showing me why these things are worth being interested in. Cultivating your interests is a fabulous means of distraction from pain. Maintaining interests outside of my field of study has helped me stay human. It enriched me as a person and helped me find meaning in flares.
3. Don’t be a ‘special snowflake’
What is a special snowflake? A special snowflake is someone who bloviates about themselves, deflects responsibility for everything to something (i.e. Crohn’s), are full of self-pity and they often expect/demand an * next to things for them. I was at high risk for becoming a special snowflake because my symptoms started when I was relatively young. It’s so easy to just blame inadequacies or laziness on Crohn’s and use it as a crutch. And I am guilty of this so many times. Thank God I have my brothers to make sure I never take it easy on myself, within reason obviously. I never want them to tell me something like “you’re doing enough in life man”. I wouldn’t ever tell them something that and I don’t think they’d expect me to. We push each other in pretty much in all aspects of life and never really put up with excuses. This was critical to my development. All I ever needed to get out of my self pity was to look ahead at the Don and then look back and see how far the freak, philly red and Boris have come. This has helped define me. I’m much more than the pain of Crohn’s disease. I am a grandson, a son, a brother, an uncle, a godfather, a friend, a research junkie, a student and a million other things before I am a temporary ileostomate or a Crohn’s patient. Crohn’s does not and will never define me. What defines me is how I help others, my interactions with my family, dealing with future patients, how I will treat those who I work with and eventually how I treat those who work under me. My grandfather, rest his soul, once told my older brother who then relayed to me that if you want to know the character of a man look at how he treats his secretary. I’m lucky to have been taught the self-sufficiency and lessons that I did. It gave me a calm tenacity, a will power, the intellectual interests and strength to accomplish goals without complaining or making myself the center of attention.
What are some lessons you have learned from your support system?? If you are the support system what do you try to teach your loved one the patient?