Collecting Stories, Surviving, and Re-Defining Hope

(Raw honesty alert.  If you’re looking for a feel good post, kindly exit now.)

Every year at this time, I become a little melancholy. 

Wisconsin winters are harsh—gearing up for them each year takes its toll for sure.  My accident happened eight years ago, today.  Parenting continues to be challenging in many respects.  I’m now firmly entrenched in middle-age, and the dampness in the air heightens the inflammation in my joints.  Arthritis is starting to make its way into my fingers.  Great, I think.  Despite my continuing to climb, my body’s rebounding isn’t what it used to be.   I miss the younger, more resilient version of myself, and so does the mirror.

While these feelings are common, they are heightened by the work I do, visiting patients and hearing their stories.   Don’t get me wrong, I savor these stories.   Connecting on a deep human level has an exquisite richness that can’t be found elsewhere, despite what messages we may see / hear on social media and elsewhere.   There’s an art to what I do—a craft, for lack of a better word, which, although isn’t rocket science, is woven in the fiber of every human being.  We are meant to be there for one another. 

There’s an odd juxtaposition I have noticed taking place—one which has me feeling empty and saddened.  It has it’s roots in something Brene’ Brown has coined:  The need to hustle for our worthiness.  This feeling is a like a festering sore, covered by the band-aid of busyness and addictions of all kinds—social media being only one of them.

I suppose being the parent of two teenagers has caused me to think about this more clearly, and in particular—parenting kids who have congenital facial differences.   In a conversation with my daughter this week, she shared how hard it is nowadays to be real.   She echoed a comment from a good friend of hers, validating its truth:  “If you are ‘real’ in high school, people just dismiss you as weird.”  What the heck?  

Being real has always been a value of mine.   Like, a to-the-core value.  Maybe it was encouraged by my upbringing and underscored by my liberal arts theology studies.  Perhaps I was just fortunate enough to have always surrounded myself with folks who embraced realness as well.

I’m not certain, but if social media is driving people to hurl false personas out into the world, it’s having a devastating effect on our young people.  

The statistics are startling, and we know they’re true.  Depression, anxiety and suicide are at all-time highs in our young people.  They’re getting the message that they’re somehow NOT OKAY being who they are.  (They need an “image” to portray on social media which will define them.)  I refuse to let my kids grow up in a world defined by that message.

Yet, I find that I have inadvertently played into the problem over the years.    

Rather than basking in the pride and achievement of all that we have overcome as a family, I have found myself discouraged by the fact that the challenges continue to morph, and we never truly get to the “other side.”

But here’s the thing.  These things (human challenges, if you will) are NOT unique to me and / or my family.  We all face them.   The problem is that we’ve all become so preoccupied with our needing to hustle for our worthiness—ie, prove ourselves, that we have forgotten that we belong to each other.

When we adopted our kids in 2007 and 2009, we were fortunate to have great medical coverage through the Wisconsin education system (my husband’s employer).  Their craniofacial issues were covered one hundred percent, including dental and orthodontics.  In February of 2011, Act 10 dismantled many provisions and benefits which existed for educators—thus, pulling the rug out from under our feet.  Our insurance was replaced with a typical large insurer, intent on exploiting loopholes and denying coverage for many of the issues our children would continue to face.

My accident occurred the following November.  Previously in perfect health, my medical needs (including prosthetic care) would now also render me an insurance consumer.  Still, we were fortunate that my husband’s job could sustain us.   I found projects to pour my heart and soul into while working my way back through the various stages of my recovery and amputation.   Starting an adaptive climbing program and trauma peer support community gave me life.  And hope. 

I knew in my gut, the importance of creating community.   Especially among those struggling.

I found comfort and connection in hearing the stories of everyone I came to know in the adaptive climbing world, and loved seeing my children grow up among so many types of differences.  In the hospital setting, the trauma peer support program limped along (pun intended), until it became obvious that resources could not sustain it.  Eventually the program folded (in reality.  It still exists theoretically on the ATS website.)

All of these realizations led me into a career in healthcare.  Companioning people in their worst-of-the-worst situations.   I now find myself struggling with compassion fatigue, and wondering what happened to supportive community?

Day after day, I meet with patients and families feeling isolated.  And ashamed.  People seem to have a reflexive need to blame themselves for their medical conditions or financial situations.  As I lean in more closely and listen to their stories, I am amazed at all that folks are able to shoulder (including myself.).  Fortune does not befall everyone, despite our reflexive need to blame people if they fall on hard times.

I understand the need to look for blame or solutions.  As a social worker, I was trained to problem solve, find the workarounds and achieve solutions.  Even China wasn’t far enough away for me to work my magic.  Eventually bringing my son home, wielding more magic and finding resources to help him along the way. 

I have seen the crashing waves of systemic trauma and collective shame gradually erode the shoreline of our shared humanity.    Technology has served to isolate us more and more, promising cheap and shiny platitudes (in the forms of memes, images or fleeting connections) as a replacement for true personal relationships.  I see patients, and my children—grasping for meaning and real mutual relationships, not based in competition or the need to prove anything.

On this day, my 8th trauma-versary, I am not celebrating anything. 

I am writing this post as a reminder that life is hard, and we need each other.

In August, I lost my good friend Teri to stage 4 pancreatic cancer.   She and I shared a penchant for saving the world, yet found ourselves corralling this passion for a more grounded career in hospital chaplaincy.  She was a warm-hearted, amazing woman who left us way too soon.   I miss her.

My climbing friend Jon was recently diagnosed with an aggressive form of brain cancer.  Jon had already lost his hand in an accident and climbed his way back to become a formidable force in the adaptive climbing world—and still is.   He is a badass, big time.  Still…brain cancer sucks.

In my job, I have seen way too many suicides.  Most of them, leaving survivors sharing: “I would never have known.”  I often wonder how long they harbored their inner struggles, and what would have happened if times were different.  We’ve become so self-absorbed nowadays—with our faces buried in technology, or just too plain preoccupied making ends meet to notice what’s happening to the folks around us (unless it’s on social media, then people become subject to blame and scrutiny).

I would venture to guess that the majority of folks experiencing hardship are caught off guard, thinking It wasn’t meant to be this way.  Accidents and disease happen.  Difficulties ensue, regardless of the sandbags we put in place to harbor the challenges which eventually come flooding into our lives.

Scott learned this week that he will be forced into retirement at the end of this year.  While we are scrambling to problem-solve once again, the future is uncertain.

The future is always uncertain. 

In the coming of the year ahead, it is my wish—my lamentation, shall we say—is that we learn how to re-create meaningful community among ourselves once again.  Where the masks fall away, and the need to prove our worthiness isn’t needed.   

My summoning to the universe is a deep pleading for folks’ understanding that life sometime does suck—despite our need to brush this reality under the carpet or frantically search for blame or solution. 

We’re all walking the same terrain, my friends.   We’re all doing the best we can, with what we have. 

In the spirit of thanksgiving, I am grateful for being entrusted with the many sacred stories patients have shared with me.  I feel fortunate for the perspective gained by being steeped in matters of utmost importance:. Health, relationships, dedication and meaning.   

I’m thankful for the gaggle of misfit folks I have had the pleasure of getting to know as a person who happens to be missing a body part.  I believe in healthcare this would qualify as “skin in the game.” I’ve got street cred.

As the frigid winter approaches, I am reminded that the seasons teach us what our aging bodies remind us year after year.  Everything is temporary.  Change occurs without our consultation. Right now is all we have.