Not long ago my friend Shelley Peterman-Schwarz called me.   Shelley called to check on how I was doing and I was anxious to learn how she was doing.  Turned out our hearts needed to talk with each other and we found ourselves sharing a very powerful conversation.

Shelley was in the midst of a self admitted pity party.  I think her call to me was her way inviting me to share and compare some of mutual pity party pointers in hopes we’d help each other find a way out of the party place.  Of which we both needed to do.  Shelley has MS, has had for several years.

Shelley shared with me her thoughts on marginalization; thoughts about sometimes feeling marginalized by friends, family, society, the environment, herself, and even the refrigerator. 

What is the definition of marginalized?   According to Merriam Webster it means:  To relegate to an unimportant or powerless position within a society or group.  Searching the net I also found this:  Marginalized:  past participant, past tense, to treat (a person, group, or concept) as insignificant or peripheral.

What marginalization might represent to a person living with chronic illness and disability is being caught in mega-marginalized noise of being overlooked, unseen, forgotten, frustrated, seen as incapable, ignored, unreachable, separated, deemed a mistaken identity.   Now that’s a rather powerful combination of noise, huh?

Shelley and I talked about that mistaken identity part, an identity others sometimes place over us that proves to only restrict them from seeing our true identity, the one they may have forgotten about.  That veil restricts others perceptual ability to see the original and sustained identity of who we have always been and continue to be; us.   We may be in a different “skin” but internally we are everything we have ever been.  We remain whole in our experiences, our joy, our love, our knowledge, expertise, passions, and all that we’ve ever done or felt in our lives.  All that and more is still; us. 

Shelley and I discussed how we think we see others as we always have; after all they’ve not changed, right?  (That could be questioned….)  Our changes haven’t impacted their identity to us, their space in society, in our environment, or in the refrigerator.  Or, have they?   Long pause here…..

Shelley and I talked about that what others seem to identify the most in persons with chronic illness and disability is what they can’t do.   That led us to understanding how that identity shades others view of what we can do.    You see, both Shelley and I have been blessed with an inside essence of an outlook embraced with the spirit of resilience.  A spirit that continues to be as boisterous as it was way back before we were introduced to our disabilities.  That ever remaining spirit isn’t there to remind us of what we lost or can’t do, but rather, it’s more like a constant catalyst of what remains with us and fuels what we can do with all that power.  We were experts in our resilience then, we are experts in it now.

Shelley and I wondered about what our role in marginalization might be.  Are we contributing to it?  Are we letting its noise overpower our voice to being able to say “hey – I’m right here you know, I can see you and I can hear you.” 

Even in spite of our boisterous resilient spirit and original self that we are confident lives on, are we playing a role in rounding up and placing our spirit and self in a position of complacency?   Are we playing a role in keeping our spirit and self bound by the noise of what has departed, held by grief and mourning its farewell, letting the noise try it’s best to abound and last our lifetime? 

The mourning, the grief, the farewell to departed ability.  That’s a lot of noise to get in the way of the original beautiful self.  That noise varies in volume too.  At first discovery it’s deafening, then the spirit of resilience reminds us of who we still are and rises to lessen the noise to a little lower level.  This goes on and on for as long as it takes and maybe as long as it is.  The noise of pain lessens little by tiny little over time, it really does.  I believe that’s how our boisterous spirit, our true self, our spirit of resilience and spirit of hope weaves a beautiful silky cloth of silence. 

But every now and then a sprinkle, splash or wave of either self or societal marginalization is thrown about and a noisy reminiscence of a long ago farewell becomes slowly audible.   It ruffles the silky silence and we lend ear to a replay of the noise, pausing again to mourn what once was.  Yet somehow still vivid and clear above the noise the silken silence swirls around us lifting us back into precious and astounding moments of which we are blessed to be in right now, in this moment.   That is our true silent self, our endeavor of resilience, our labor of hope.

Shelley shared a powerful story with me about a time when her and her husband hosted a dinner party at their home with friends.   The dinner party went marvelously with great conversation and a wonderful meal.  Seems like any other dinner party, right?   During the meal, during clean up, and all things enjoyed, everyone shared and savored a feast of a gathering that eventually led guests and hosts to the living area for continued conversation.  It was during all this activity and interaction that Shelley found herself completely overlooked in the important role she played in planning, cooking, inviting, coordinating, and being present throughout the friendly celebration.  As the meal was enjoyed compliments were shared with Shelley’s husband, as the table was admired and cleared, the focus of admiration was on her husband rather than Shelley.  As everyone celebrated the feast and raised compliments to the evening, it was as if Shelley was relegated as unimportant and powerless in her actual role and presence in her own home and of what that evening was about.  She shared with me she felt marginalized, certainly unintentionally, but none the less, she felt that way.   Was it because Shelley is seated in a scooter and not able to always be eye level with others that no one sees her?  Is it that people have forgotten that boisterous spirit of Shelley?   That I find hard to believe, Shelley has quite a spirit, for sure!   Or is it because her identity as an able bodied woman is fading from her friends memories, from their spirits, from their own identity? 

Does this happen in your life?  Have your memories of true identity before you faded?   Are you or someone you know a past participant or a past tense?  I hope not because the past is the only place for marginalization – to allow it to fade away, to make it disappear. 

As for right now – beside you, before you;  stands, sits, rolls, lays, shuffles, or walks, a very present participant, a very important, powerful person who has a right now story, a gift, and a significant place in their place in this world, their world, and your world, our world.   Sharing it together is where moments of astonishment occur over and over and over again.  It’s powerful; it’s resilient, important and it is significant to us all.  As my friend Shelley shared with me, “I will, if you will.”

Thank you Shelley.  I will.

Image from Google Images