Sunday, January 20, 2013

Support Groupie

As a young adult- I didn't understand the support group dynamic. I was a fairly introspective person and couldn't quite relate to how sometimes people just need people to understand. Despite losing my dad and brother at a young age- I still viewed life as something with endless possibilites and a rainbow at the end. I usually butted heads with my mother who at the time to me- seemed like a glass half empty kind of person. I had my own glass and was running around trying to fill it. It takes a lot of years and a lot of experience to realize that sometimes it is not possible to keep a full glass. Sometimes you get to a point where you realize that you don't even want a full glass- you just want to maintain what you have when the world around you seems to be dying to take what's left of your glass with them.  Sometimes one person's full is another person's half is another person's overflowing. Sometimes it depends on what's in your cup- who wants a full cup of crap anyhow?

Relationships change dramatically after cancer. I have no idea if it is due to the changes cancer requires or the inherent nature of relationships.  A friend of mine recently recommended the TV Show GO ON with Matthew Perry. I saw the previews but was hesitant to watch a show about a man who just lost his wife. My friend insisted she hadn't laughed that hard in a long time- so I gave it a gamble and spent the better part of a morning catching up on all the episodes. I laughed- sometimes until I cried and then I felt better. To me that is what friendships are about- helping someone with a few drops of sunshine along the way. Yet ironically- when you face with cancer- many people have no idea what to say- or they don't like the feelings your having a life threatening illness produces in them- so they stop talking with you. I remember once after my dad died talking with my mom about visiting with family and friends. She had pulled away from our biggest support group and I didn't understand why. She simply told me that sometimes it was too hard and too exhausting to be the one to always make the effort. People don't want to hear you aren't OK- so they stop asking and at some point- it's too much work to pretend you are OK- so you stop. And the calls become fewer and you find yourself making new friends. I thought that was craziness- until I had four kids- 2 with medical issues and then dealing with my own cancers on top of it.

My view of support groups has also changed. In this era of social networking- it has been said and is true- that although we are more connected than ever - our relationships have deteriorated. Social networks have given support groups a new platform. I am part of groups for Li Fraumeni Syndrome and Pediatric Adrenal Insufficiency that help me day to day. These groups really work for me because these conditions are so rare with rules for living that even docs just don't understand. These groups cover issues that standard of care can't touch- issues like how to live with life threatening illness. Although they are filled with different personalities- they are filled with people who have something in common are are trying to live their best life despite it. I finally arrived at the point where- it didn't matter so much how much was in my cup- I was there when bits fell out- and I at times exhausted myself trying to fill it back up.  Yet I also found people who could see what was in my cup and how heavy it was. Just having someone who understands and testify that although your cup is heavy- you can carry it. It may not ever get lighter- but it might and I guess that's why we keep carrying it. Sometimes they help you see the beauty of what's in your cup and you realize that you got so preoccupied with carrying the darn thing- you forgot to stop and really appreciate what you had in your cup. It's not about what is in anyone else's cup- everyone needs to fill it with what they want or what they can- it's about appreciating what you have in your cup and remembering why you were trying to fill it up in the first place. Sometimes the only reason to fill it is so you can share with others when they need a few drops of sunshine.

1 comment:

  1. Hi... Ive seen your blog and i wanna follow it.. My 2year old son was diagnosed this jan. 2013 with acute lymphoblastic leukemia.... And had surgery yesterday (port implant).... I havent tell any of my friends.. Because theres always a feelibg of choking everytime i needed to say that my baby has CA, its really hard... Im thinking about blogging and documenting it, but im afraid that my neighborhood will talk about my childs illness... I just cry all the time...


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)