Thursday, March 2, 2017

I am not alone

A week before I left, I searched for every reason to cancel my trip to the Spoonie Collective retreat.  I was in the middle of a flare, we were moving in about two weeks, I had important interviews the week I would come back, the worry was if I came back depleted there was so much to get done that everything would fall apart.  Adam finally looked at me and said "you need to do this, you want to do this, stop looking for reasons it won't work."

With all of those reasons and more I embarked on a trip to Vermont, to a Chronic Illness, Wellness Retreat, hoping to find some new connections and resources.  Wanting to be a part of the Spoonie Collective and spend time learning and sharing with other people about living with complex chronic illness.  

The honesty and vulnerability that people displayed was amazing.  Being able to be honest, to be able to say things out loud that I have never said to anyone before was freeing.  I am still in this crazy process of grieving an old identity, grasping on to it and forming a new identity.  For me it has been a pretty isolating experience, I am so fortunate to have a health care team that believes me and some extremely patient people in my life.  There is nothing like getting to talk to people and say "me too."  There is nothing like hearing someone's story and saying "I thought I was the only one."  

That was the strength of this retreat, bringing together people from different places, and different parts in this process.   Hearing people share their miraculous recovery, people sharing this worked for me but I get that it may not work for you.   One of the chefs even made me a small shepard's pie without carrots, I had tears in my eyes. 

I learned how healing it can be to hear and share stories, even if they don't end with "I got better."  Each one of the people I met is still living their life, it just looks so different and they still want more.  That is the gift of this illness for me, to remind me to keep improving, to keep growing and that everything changes.  

Here is a link for the stories that people told at a live storytelling event.  I hope one of them shows you that you are not alone and there is always someone who will listen.  

Question of the day: What do you need to share today?  What is something that you haven't said out loud that has been festering around?  Maybe just say it outloud looking in the mirror, in the shower, give it a voice.  


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