If You Only Knew The Story Behind This Pop-Up Tent…

Is this really just a tent?  It depends who you ask.

At first glance, this simple image of a pop-up tent seems ordinary, doesn’t it?  I mean it has the Gutterpy bells and whistles, so that makes it a little different but still, there are millions of these things everywhere so what’s the big deal?  Ask me that question, and I’ll tell you this image stops me in my tracks.  I stare at it.  I rub my eyes.  I take a deep breath and think about how this simple image encapsulates the last three years of my life.  It’s really more about the words printed on the tent than the tent itself.

It reads Cholangiocarcinoma Foundation – how do you even pronounce that word?  Ko-Lan-Geo-Car-Suh-Noma is how you say it.  It’s a cancer that strikes the liver and is often called bile duct cancer or just cholangio for short.  It’s been two years since my wife passed away from this awful rare cancer.  They say it’s rare – only accounting for about 2% of all cancers.  Cholangio has forever become part of my identity, so it’s not that rare to me.

Losing Sarah was extruciatingly painful and still very much is.  After she passed, I felt everything was my fault – my fault for not catching the cholangio earlier, my fault for not finding the treatment that would save her life, my fault for the pain she experienced, my fault that she’s not alive yet I am.  You blame yourself enough, and your self-esteem takes a massive blow.  I made the conscious decision to not spiral into depression and began working out like crazy and buying nice clothes – anything so that I could feel better about myself.  But depression was patiently waiting outside the front door just looking for the opportunity to make itself at home.  I had a three-year old boy to raise and I wasn’t about to answer the doorbell.

Grief is an incredibly mysterious thing. 

It has a tendency to permeate everywhere in your life and you don’t even recognize that it’s doing it.  There’s no way to predict how grief will manifest in someone experiencing unspeakable devastation.  I began volunteering with the Cholangiocarcinoma Foundation a few months after Hank and I lost Sarah.  It was my way to make sense of her passing.  I didn’t just volunteer though.  I dealt with my grief by building things not only to channel my pain into something constructive but also to address real problems that patients in this community often face.  I felt I was making a difference and thought this volunteering thing was going to be my full-time gig.

Remembering Sarah’s cancer battle, I thought of the many brick walls we encountered – some medically-related, others bureaucratic.  I wanted to address the latter because I thought those types of problems were man-made and should be fixed.   So I put my head down and went to work.   A year later when I came up for air, I was pleased with the three programs I helped launch.

  • CholangioConnect – a mentorship program connecting newly diagnosed patients or their families to other patients and caregivers with personal experience in this disease
  • Drive Away Cholangio – a fundraising program that uses ridesharing platforms like Lyft and Uber to turn rides into cancer research funds
  • Clinical Trials Explorer – a program designed to increase patient participation in clinical trials

Then began Year Two without Sarah

At bereavement counseling, the brochures don’t tell you how persistent grief can be.  And they certainly don’t give you a heads up that grief has a way of kicking into overdrive once the first year is over.  In my case, grief’s resurgence had more to do with anticipation of the one-year anniversary than the anniversary itself.  My theory is once the one-year anniversary arrives, it opens the floodgates and gives license to anything that even resembles an anniversary the right to become equally as intolerable.  The anniversaries of the day we moved into our home or the day we bought her car, or even our trip to Hawaii all became these dates filled with paralyzing sadness.  Whatever the reason, grief began to completely debilitate me.  I ceased volunteering and handed these programs – the same ones I had spent months and months developing – to other people because my wounds were not healing.  I was drowning in sadness, and it was all I could do to keep Hank and myself above water. To deal with grief’s encore, I defaulted to my go-to move – building things.

Right about this time, I had started tinkering with Gutterpy – an idea I had in my back pocket for a few years.  It’s not rocket science but it does address the real first-world problem of water not draining off pop-up canopies.  This project is different from the foundation projects I had helped create.  It doesn’t make me sad but energizes me rather.  It isn’t cancer.  It isn’t pain.  It has nothing to do with the stressors of single parenthood.  Gutterpy exercises my creativity and challenges me.  It’s never been about making money or becoming famous.  It’s been about taking an idea on the back of a napkin and willing it to market.  Gutterpy has always been an outlet for me to channel heartbreaking grief into something positive.

However, at the moment, I’m no longer affiliated with the Cholangiocarcinoma Foundation.  My focus is now on raising my 5-year old Hank.  I stopped volunteering because it interfered with my recovery.  But I’m so proud to hear CholangioConnect has grown to a cadre of 50 mentors and is making a real difference in peoples’ lives.

The Tent

So when a dear friend of mine who is a volunteer with the foundation and a cholangio survivor contacted me about building a Cholangiocarcinoma Foundation tent, I jumped at the chance.  As I write this blog entry, the image you see at the top of this post is being manufactured into a real Gutterpy tent.  It brings me full circle and the reason I tear up whenever I see the image of this simple pop-up tent.  And that’s why it stops me in my tracks.

If you’re a runner, be on the lookout for this green tent at the 2018 Bank of America Chicago Marathon.  Team CCF will be using it for its headquarters at the race.  Think of Sarah.  Think of all those afflicted by cholangiocarcinoma and know that it’s more than just a tent.

When I feel the grief coming on, I try to build my way out of it.  What do you do?