Tuesday, January 21, 2020

Your Story NEEDS to be Told!

Over the last few weeks I've seen three different comments in a group I help run for TTTS about sharing 'positive stories'.  I'm not going to lie, comments like that get my back up each and every time.  They have best of intentions but when you write a post that starts out with something like 'All through my pregnancy I avoided this group because I only wanted to read positive stories and I vowed if I had one I would share it here' it makes those without 'positive stories' feel like their stories don't have value or maybe have less value. 

The thing is that every story, EVERY SINGLE STORY, has a place.  Every story to struggle, of trials and challenges, of obstacles, of hope, joy, sorrow and sadness...they all have a purpose and they all need to be shared. 

Each story should be shared because it can impact someone without us even knowing it. It can motivate someone to ask more questions. It can push someone to seek, ask, search, reach out...anything but stay in the moment that is causing distress. It can be the tipping point someone needs to say 'something isn't right'.  It can be the trigger to encourage someone to seek answers to a long gone crisis that still hurts so much. It can be a spark to begin the healing glow, the encouragement needed to work to find peace.  Sometimes it's just the bit of comfort someone needs to feel much less alone.   

Whatever it is, whatever it does for someone else who hears it, it's got so much value and it should be shared.  We can't only share the stories of perfect endings because perfect endings aren't reality.  We can't only show the positive outcomes, the stories where the villain is slain and the hero wins because sometimes the villain isn't slain right away.  Sometimes that villain seems to have won.  Sometimes death seems to defeat, tragedy seems to prevail, cancer seems to win. But don't stop reading the story there, keep reading to find the hope.  And don't stop telling the story there either.  Life for one may have ended there at that tragic point but it continued for everyone left behind.

I've always felt that way about the loss of Cole. His story of life ended on December 13, 2008 but his story didn't end there because I kept living. I kept living and I kept sharing the boys and their story.  I kept trying to help others by what I learned through the journey we took with them.  I kept striving for better care for others, kept working to raise awareness and funds to help, I did what I could to keep finding hope and joy in the way that I felt Cole lived on in my heart.  His story didn't end because my story hasn't ended. I pray my story won't end because someone has been inspired by me to keep going.       
Sometime in the last week I read this devotional and it gave me another reason to keep sharing the stories of trials that we aren't sure how we got through.   Sharing our stories with others not only offers hope, it opens up a level of trust and connection that can't happen any other way but by opening up our hearts to others.  As the author, Nicole realized, Jeannie's 'willingness to share with raw vulnerability didn’t cause her to back up but to lean in.' Being open, sharing your story, and with it, your heart, is hard and it's vulnerable but it allows for a door to be opened. If we can trust someone with our most vulnerable places then we can move our relationship to a place of connection and of closeness that allows us to build trust, to love, to care and to grow. It allows a friendship to go years beyond the life it's traveled together, to go back in time so to speak.  It tears down the walls that we build around ourselves at times because we've been allowed into their vulnerable place.  

This particular line really spoke to me..."Her vulnerability caused the space between us to collapse, and it challenged my ideas about what really draws us to one another."  When we allow ourselves to be vulnerable with each other then we are drawn into each other's lives in a way that transcends time, in a way that makes us feel that person has been part of our story and us theirs for so much longer than the reality it has existed for.  

And when we think about human nature we can see that sharing this kind of vulnerability goes against the inner grain of many people and has for many years.  As Nicole puts it....
" Ever since Adam and Eve ate from the Tree of Knowledge of Good and Evil, recognized their nakedness, and felt shame, the human race (regardless of culture) has been prone to hiding. We have become people who are tempted to shield our private selves with carefully constructed public selves. Adam and Eve physically hid themselves with fig leaves. We don’t tend to use foliage in this way anymore, but we are a people familiar with hiding, aren’t we? And hiding doesn’t just look like withdrawal. Hiding is anything we do to try to protect ourselves from pain: blame, shame, control, or escape."

We hide our stories for many reasons....shame or blame, guilt or confusion, distrust, escape, denial....the list could go on and on.  But when we share our stories we open up a place for healing in both ourselves and the person who is listening.  We allow the listener to see that there is hope.  We need to tell our stories so we can connect to others.  We need to connect to others so we can see how healing happens.  We need to see how it's happened in their lives and they nee to see how it's happened in ours.  

So share your story and never stop sharing it.  I'll listen and I'm very certain many other hearts are listening too. 



1 comment:

  1. Jodie, we know each other very well. At the time we began to communicate with each other, there was No Alternative to the group that "Shared Positive Stories", to the Distinct Exclusion of all others, regarding the murderer Twin Twin Transfusion Syndrome TTTS. This particular bit of commentary came to me as cited in a Facebook group dedicated to changing embedded systemic faults at Children's Hospital of Philadelphia CHOP. It is true that many with Suboptimal Outcomes can become intimidated by those who have a Separate Agenda in promoting "Happy Endings" to stories of TTTS, for example, in which the "Good Guys Win."

    As you know well, in the case of myself & my wife at the time back in 2010, The 'Good Guys' at UC San Francisco had only a Suboptimal treatment regimen available, which failed to tread Dani's Stage Three TTTS, after we were told by Han Min Lee's assistant, Danny, that our case was "Impossible to treat via Laser", due to her anterior placentation. She endured 5 instances of Amnioreduction before our son Morgan Mark Aaron expired. You are intimately familiar with what Transpired next beginning in late 2010, & were in many important ways Instrumental with the events that followed Brian Raymond Lee's passing on October 1st of that year.

    It is good to read that you are remaining true to your Guiding Principles today as they were back then, encouraging those to Simply Talk about what happened, Regardless of outcome. This principle can have the effect of nurturing Actual Changes in the way disease is handled by the medical communities.

    Thank You.

    ReplyDelete