Wednesday, October 3, 2012

Healing, Part One

A few years ago when we lived in Canada, after my whirlwind Ulcerative Colitis diagnosis and first surgery to remove my diseased colon, while I had a temporary stoma, an old acquaintance phoned me.  (I'll call him) John began the phone conversation tentatively, as we hadn't ever known each other all that well and he was very aware that I might think it odd for him to phone me up out of the blue.  "I heard about your diagnosis and surgery," he said.  "I've been diagnosed with colon cancer and am going through similar things as you, I think.  I was hoping we could talk...  I, um, do you ever have problems with controlling your bowels?"  "Oh, messing your pants in public?  Yeah, been there, done that," I responded, and the conversation took off.

Picking up the pieces
What meds are you on?  Do you have a moon face from the steroids?  What treatment options have you been given?  What can you eat?  Aren't NG tubes absolute hell?  The conversation culminated in him telling me about a recent event involving his van, a potty chair, and a drawn sidearm.

John had been very active as a Boy Scout leader, and had a large panel van with which he used to haul the camping equipment for his troop around.  After his diagnosis and partial colectomy, he placed a potty chair in the van and accustomed himself to only making short forays away from home whenever he could possibly help it.  "I know where every public toilet in a 10-mile-radius is," he told me proudly.  The potty chair was for when he absolutely couldn't make it to a public washroom, which did occasionally happen, as any IBD or colo-rectal cancer patient can relate to.  On this occasion, against his better judgement, John agreed to run an errand for a friend which required driving on the beltway around Washington D.C.  At rush hour.  With an even larger-than-normal backup due to an accident.

After close to an hour of fighting the urge, John realized he couldn't hold it anymore and wasn't going to be able to make it to the next exit.  He pulled his van off on the side of the road as far as he could, turned on his hazards, and made it to the potty chair just in the nick of time.  Unfortunately, this round of chemo-induced emergency poop lasted for a while, which is how John found himself surrounded by State Troopers demanding he open the back door of the van and come out slowly, with his hands up.  The officers had pulled over to investigate, knocked on the back door, and were surprised to hear John call out, "I'm in here, I'm going to the bathroom, I'll be out in a minute!"  They assumed this was some sort of clever ruse for illegal activity and ordered John to exit the van immediately, which, of course, he couldn't.

After a few back-and-forth verbal rounds John was fed up and yelled, "Listen!  The door is unlocked!  I promise I have cancer and am just taking a ****!  Come in if you want, but don't say I didn't warn you!!"  The back door slowly opened to reveal a shocked Trooper, gun drawn, taking in the sight of John on his potty chair.

And, of course, the officer was a woman.

John and I howled with laughter for several minutes; I had to bend over and hold my stomach while I gasped for breath.  "Thanks," he choked out finally.  "No one else will laugh with me about that."

Of course they wouldn't.  It was too painful of a story for those close to him to hear, too evident of the depths his life was currently occupying.  Too nasty for others, too much detail for some, too foreign for many, not appropriate to share in most social contexts.  But for someone else dealing with the same poop issues, for someone else who understood the pain, the shame, and the embarrassment -- for me who had already at that point developed a very interesting sense of humour as a method of coping -- well, it was HILARIOUS.  We both got off the phone feeling considerably better that day.

Not all the conversations with John were so uplifting, and he died a few months later.  Still in the throes of treatment and having just narrowly escaped death myself, it was a sobering event.

Another friend lost her husband this past week to cancer and Crohn's Disease.  (It was the cancer that killed him, but the Crohn's didn't help the treatment or prognosis.)  When I first saw her notice on Facebook about his downward turn in health I was surprised.  I hadn't been on FB in a few days and, as he had been fighting the cancer for 5 years, I guess I had grown accustomed to the reports of ups and downs and had forgotten that death could be imminent.  I never met Phil in person, but I came to know him a bit through letters and notes from Elizabeth, his wife/my friend and through his posts on the Caring Bridge site.  (www.caringbridge.org)  I also felt a sort of weird connection with him due to his struggles as a fellow IBD patient.

As I scanned the last few posts I found one where Phil mentions "taking constructive criticism" about the tone of his CB journal and attempting to be less cranky.  "WHAT??!?"  I thought.  If anybody has a right to be cranky, THIS guy does!  My inner cynic immediately began pontificating about how people just love to hear from noble sick people who are cheerful despite it all and do their best to remain upbeat.  We don't want to hear about the nasty, gross, depressing, chilling, CRANKY times.  Heck, we don't want to live them, either!  But we all do, at some time or another.  We all do.

"Be kind, for everyone is fighting a hard battle."  (Plato)

Lately on Facebook there have been a lot of "repost this status" notices about people with "invisible disease" or difficulties.  I don't repost them.  It's not that I disagree with the notices, necessarily, it's not that I disagree with the sentiment, it's just that I'm here.  I am visible.  People are visible.  And all of us, ALL of us, need a listening ear, a laugh, some support at one time or another.  Whether it's because of cancer or IBD or because we're just having a really bad day or we have a differently-abled child at home or because we're so depressed that we're barely able to pick up all the pieces (let alone put the puzzle together!), all of us need to be handled gently, to be respected, to share a laugh, to have someone listen to the nasty, gross, unpleasant parts.  We need someone to laugh at the potty-chair-in-the-van stories with us and we need someone to cry with us when it hurts.  And, honestly, you never know when it might be the last time you can offer that to someone.

Of course people need to be told to get it together sometimes.  Of course people wallow and need to take responsibility.  Of course people try hard and fail.  Of course sometimes it's all just too much and we can't hear any more.  And of course none of us can help everybody.  But we can all be a little quicker to listen, to at least sympathize if we can't empathize, to give the benefit of the doubt.  We can realize that maybe that criticism to Phil really was constructive; maybe Phil needed to hear it and the person saying it knew and loved him well.  We can realize that maybe we don't know the whole story behind everyone's actions; we can be quicker to encourage and laugh with rather than criticize and mock.

We can give thanks for our blessings and sit with those who don't feel like they have any, even if we don't say one word.

Because all of us need healing of one sort or another.


--For John and Phil, who don't need healing any longer as they rest in their Saviour's arms.