Searching for Community

This is a season of contradictions for many.  The chronically ill feel the tug of Dr. Doolittle’s push me pull you character.    We isolate ourselves, instinctively pulling away from others.  This is an automatic response to the stress of sickness for many.  Yet the holidays push us close to family and friends in our lives, the very people who know and love us.

And even as we withdraw into ourselves, we feel a pull toward others who share our conditions.  Sometimes, we join affinity groups, single illness advocacy and service organizations.  They hold a special place in our lives. For some, these groups become almost a family, an important support system. 

People like us are our brothers and sisters, ready to help in any way they can.  The ALS community in California has been known to help each other shop, pick up essential supplies, even to help others move into new homes that meet their needs.  Their commitment o each other seems boundless.

There is no contradiction here.  We still may feel withdrawn, but we need some human connection.    We need to give and get support from each other.  We do not have to go on and on about our conditions to our comrades, only to know they get it.   This becomes a special comfort zone we enter, a safe place where we can just be with others like ourselves.

We do not isolate ourselves from the chronically healthy in anger.  It is only good defensive football.  Silently, we hope to walk with them someday.  In the end, that single word, hope, may explain what community is all about.  People who know our shoes reassure, even inspire.  In the lives of those surviving sickness we see our own.   And so we find acceptance.  We are not damaged goods to each other, only human beings in pain.

4 Responses to Searching for Community

  1. Mimi December 27, 2013 at 7:40 pm #

    One blog that I have been following for years has provided me with a sense of community because the author just “gets it”. A post he wrote in 2009 is one I have read a few times because as my illness progresses, I can relate to it more and more. The blog is called Wheelchair Kamikaze and the post I’m referring to is “The Problem with Progression” (http://tinyurl.com/l4j5xx).

    Thanks for your posts and thanks for expanding my community.

    • Richard M. Cohen December 28, 2013 at 9:05 am #

      It is a privilege. Happy New Year.

      Best,
      R.

  2. Jenny January 9, 2014 at 11:34 am #

    While I don’t have the same illness, I can relate to the need and comfort of people who understand. I am 80% bedridden with Chronic Fatigue Syndrome or another name for it is Myalgic Encephalomyelitis. It’s basically no energy, chronic pain. I’m still searching for a doctor who understands what I have and how best to treat it. Most doctors still think it’s an “in your head” condition.
    I enjoy your blog and wish you the best with your experimental treatment.

  3. Deb January 16, 2014 at 7:32 pm #

    Dear Jenny, I would like to recommend a book to you, “How to be Sick”, by Toni Bernhard. She shares your illness and may help you find your community.