In one of my favorite “West Wing” episodes, (Season 2, December 20, 2000, “32 Noël”), the White House Chief of Staff character Leo McGarry (played by the late John Spencer) tells White House Deputy Chief of Staff character Josh Lyman (played by Bradley Whitford) the following story as he tries to help him address his Post-Traumatic Stress symptoms from a shooting he was badly injured in:
This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out.
A doctor passes by and the guy shouts up, ‘Hey you. Can you help me out?’ The doctor writes a prescription, throws it down in the hole and moves on.
Then a priest comes along and the guy shouts up, ‘Father, I’m down in this hole can you help me out?’ The priest writes out a prayer, throws it down in the hole and moves on.
Then a friend walks by, ‘Hey, Joe, it’s me can you help me out?’ And the friend jumps in the hole.
Our guy says, ‘Are you stupid? Now we’re both down here.’
The friend Joe says, ‘Yeah, but I’ve been down here before and I know the way out.'”
Being hospitalized for ANY chronic illness or condition can be a lonely and depressing situation. Since Crohn’s Disease and Inflammatory Bowel Disease (collectively referred to as “IBD”) can result in repeated, painful, emotionally exhaustive, unpredictable and difficult hospitalizations, the IBD hospital experience can be intensified to the point where the patient feels like a lonely, pin-pricked, Leper. As if that isolated and ostracizing feeling isn’t enough, the IBD hospital patient must also often cope with a very uncomfortable “NG tube” forced down his/her nose to alleviate the intense abdominal pain and he or she must move around tied to a pole from which hangs a heavy machine which pumps medication and nutrition through his or her veins. It’s happened to me over two-hundred (200) times in my 30 years with Crohn’s Disease so I know how physically, mentally and emotionally challenging it can be despite wonderful visits from friends and family.
Many people and organizations with the sincerest of intentions profess to want to “help you through the hospital experience,” but as we all know, and as demonstrated by the “West Wing” story above, nothing can substitute for that “normal feeling” you get, when you are visited in the hospital by someone who’s been, where you are. That’s what gave me the idea for the “Crohn’s Disease Warrior Patrol.”
The “Crohn’s Disease Warrior Patrol” will be a Charitable Endeavor matching interested Crohn’s Disease and IBD Patient “Warriors” with interested local hospitalized IBD Patients to provide them with comfort, experience, personal patient stories, a hug, a smile, a laugh and an overall cheerful hospital visit to let them know we are in this fight TOGETHER. It is a technology-powered grass-roots “IBD Patient Movement.”
There is much to be done to set the “Crohn’s Disease Warrior Patrol” into motion but like anything that truly makes a difference, it starts with small steps, dedicated people and some generous benefactors. In that regard, I have set-up the temporary website at www.crohnsdiseasewarriorpatrol.org and will have my Web Designer Extraordinaire soon refine it so that Patients and Warriors can be matched by zip code, and information can flow freely and safely. There will also be informative content on the site, and in the process of facilitating Crohn’s Disease patients helping other Crohn’s Disease patients, I hope to raise Global Awareness about Crohn’s Disease and Inflammatory Bowel Disease. I’m not an organization or a corporation; just a veteran Crohn’s Disease patient who understands that it takes one, to know and comfort, another one.
If/when you visit the website, please click on the “IBD Patient Movement” to learn a bit more of the details. Among those details is the promise that ANY Patient or Warrior Contact Information obtained through the website or the Crohn’s Disease Warrior Patrol “Patient Movement” will be used SOLELY for the purposes set forth above. You can then submit your Contact Information and type out a message indicating your status (i.e., Patient, Warrior, location of hospital, etc.) and we will try to expeditiously match zip codes within a hopefully fast-growing database of interested Crohn’s Disease and IBD patients.
Finally, and as stated above, this is a Charitable Endeavor, but it takes some money to set up the proper non-profit, tax-exempt business entity, pay the web designer and maintain the site/service. I wish I could fund this myself but because of Crohn’s Disease, all I have to contribute is my sweat equity, but that is my pleasure. Therefore, if you are so inclined to help us out financially, please understand that any financial contributions will be considered “gifts” until we are able to pay/consult with an attorney to form the appropriate non-profit, tax-exempt business entity. Thereafter, the Crohn’s Disease Warrior Patrol will operate just like any other charity. That said, ANY financial contributions would be greatly appreciated and they can be made in the form of checks made payable to “Crohn’s Disease Warrior Patrol” and mailed to me, Michael A. Weiss, at 184 Zeppi Lane, West Orange, New Jersey, 07052. My email address specifically for this charitable endeavor is firstname.lastname@example.org; my Twitter handle is @CrohnsIBDWarrior.
I thank you for your interest and support.