Friday, July 27, 2012

THEY CHOSE THE LOVE, NOT THE BATTLE

It’s opening night in Cleveland.  Part Two.  Although this is not the original venue for the breathtaking, heartbreaking and poignant photography of Angelo Merendino, most all will agree it is a more appropriate venue.

While it isn’t my intent to focus on the past, I’d be remiss if I failed to mention that something did happen.  Angelo’s exhibit, which I had the absolute privilege of seeing in NYC this past January, is a photo documentary of a love story at the deepest possible level one can imagine.  The Battle We Didn't Choose.  Angelo’s wife, Jennifer died on December 22, 2011 of metastatic breast cancer.

Why do I keep hammering away at the word “metastatic” instead of just saying “breast cancer?”  Metastatic disease is what kills.  It is underfunded, under-researched and those living – yes, it is possible to live many years with metastatic disease -- often feel left out, forgotten, lost beneath the sea of pink ribbons that permeate our global society.  Angelo’s photographs chronicle Jennifer’s life, their life with, and Jennifer’s death from METASTATIC breast cancer.  The photography is not pretty.  It’s beautiful.  And it’s also the reality of the ugliest part of this disease; the part of the disease shoved aside for too long.

They are the women and men who live each day hoping that research will catch up before the disease takes over.  Before they run out of treatment options.  Before they die.  Jennifer and Angelo lived with that hope, but theirs was a hope underscored by a palpable urgency.  Lest we EVER forget, Angelo’s photos are a poignant reminder of that truth and of their reality. 

As an artist, Angelo understands the subjective view each of us will take away upon seeing the photographs.  Through his lens, Angelo saw how his wife was “so brave, so courageous and fought with such grace.”  However, others, looking through the prism of their own experience, may see pain, suffering, tragedy or fear.  For me, the camera doesn’t lie.  I see reality.  An irrefutable, undisputable reality.  A reality that exists for many.  A reality for those whose disease is an inconvenience, a stain on the ribbon.  It shines the light on those constantly being pushed into the darkness because their reality destroys the illusion of hope.

The Gathering Place (TGP)  in Cleveland, OH invited Angelo to display his photography in their gallery.  Invited.  As in: They.Asked.  He agreed and he submitted all of the images he planned to use for prior approval.  He did all of this at his own expense, including the opening night reception he hosted.  TGP was the beneficiary of the advance publicity.  After one week, some patients and families who frequent the center found the images upsetting.  A decision was made by TGP to halt the exhibit (immediately and abruptly I might add) and a public statement was issued.

I do not have metastatic disease nor do I run any sort of support center, but I can appreciate how this would be the predictable response of many who walked through the doors of TGP seeking support and comfort.  Angelo was nothing but gracious.  He understands how these photos might upset others.  He quietly accepted their decision.

The world of social media, on the other hand, did not respond as quietly……Or for that matter, as graciously….. if you follow this blog with any regularity, you might recall some of the inappropriately hurtful remarks hurled at me.  This, however, is a private blog.  TGP is a public, not for profit entity.  Angelo’s story was being followed by many in the months leading up to today.  All it takes is for one person to see something on a social media site and the ripples begin.  No one was more surprised by the show of support, by the sheer numbers of people who began posting on Facebook, tweeting and blogging than Angelo himself.  This is where the love of friends and the kindness of strangers began to pour in to honor Jennifer and offer support to her grieving husband.  Ironically and unwittingly, Angelo was suddenly in the center of A Battle HE Didn't Choose.

Stop.  Breathe.  Think.  Take a moment to remember this isn’t just any photographer displaying his work.  This is the art of a caregiver, a husband, a man who was deeply in love with the woman in the photographs.  This is the photography of someone whose heart was shattered as he watched his beautiful wife slip from his life, taking her last breath on him and taking with her, all of their dreams for what should have been a future filled with promise.  This is the body of work of someone who remains grief-stricken by what is still so raw:  His wife’s death.  Jennifer Merendino.  Just seven months ago.  In “grief time” that equates to mere seconds when you are the one who is sitting in that grief chair.  Others, no matter how close, cannot possibly understand this concept unless they have been in that chair.

The manner in which TGP has handled the situation is less than stellar and it has little or NOTHING to do with the actual removal of the photographs.  Bears repeating.  The less than stellar comment is NOT about the decision to remove the photographs.  It began with the poor judgment on the part of those in charge of curating the art on their walls.   In my most humble opinion, this lapse in judgment was simply a failure to truly think about all of those who enter TGP.  No one doubts the sincerity of their apology.  We ALL make mistakes.

However, admitting a mistake and then leaving Angelo on his own to solve a problem created by TGP is where, for me, it gets a bit dicey.  This is the only issue I believe to be discussion worthy.  Why?  We mustn’t forget Angelo was invited, he selected the art so it could be pre-approved and then took on the expenses necessary to set up a ten week exhibit.   “We are deeply sorry,” doesn’t really cover it for me.

What Angelo went through upon hearing the art was being removed is at the heart of the matter and that is getting lost in everything I am reading.  TGP is a place of support.  It’s a place where Angelo himself might have turned to for support. As such, wasn't he entitled to some level of compassion?  Angelo is firm in his belief that the photographs should have been taken down.  If it upset even one person walking into TGP looking for solace, that was one person too many.  Jennifer’s grace and concern for others, her legacy of love and caring is what is in Angelo’s heart.  He is a kind soul with the same deep concern for others.  Knowing his exhibit might be causing pain for others made it very easy for Angelo to put himself in the position of TGP and support their decision.  And he did so without a moment’s hesitation.

When the uproar began, repeating again, an uproar from the social media community, TGP was put in the position of having to defend their actions and in so doing,  Angelo was thrust into  the eye of a media storm.  To say he was overwhelmed is an understatement.  Thankfully, friends of the couple have stepped in to help Angelo navigate the storm.  Angelo was adamant that TGP should not lose support as a result of their decision and was concerned by the volume of negative comments that he was seeing online.

Abbey who is a part of the twitter #bcsm group I often speak of in blog posts, knew Jennifer through their support group. With her knowledge of the situation and a background in corporate communications, she worked beside Angelo, who was determined to frame his message so that there could be no mistake regarding his ongoing support of TGP despite this unfortunate turn of events.  Media inquires poured in and Angelo limited his contact making sure this did not turn into a circus.  This was about the exhibit, about honoring Jennifer, about finding a new venue.  There would be no negative remarks directed at TGP.

Another friend, Janiece, an accomplished attorney who also met Jennifer in a support group, has been providing Angelo with her assistance, pro-bono, hoping to bring the situation to an amicable resolution.  Many other friends of the couple as well as many who never met them but have followed their poignant journey via their blog and Facebook pages have embraced Angelo as this new chapter has unfolded.  Gayle Sulik will be including some of the photographs of Jen in a section she is adding to Pink Ribbon Blues when the paperback version is release in a few months.  Several blogs have posts about Angelo and Jennifer. Facebook is filled with comments of love and support.  Friends and strangers have run to his side to do for him what Jennifer would have done for each and every one of them.

Yet, there remain many practical issues and TGP should acknowledge some sort of moral obligation to help Angelo, if not from the standpoint of an organization whose actions created additional unexpected and unnecessary expenses, then from the standpoint of someone who is simply worthy of their support as part of TGP community.  And then, act on that obligation.  Being deeply sorry, admitting an error in judgment, and abruptly removing the photos from their gallery for Angelo to retrieve is simply not enough.  This is a place of support and their actions have shunned a man who is still living with tremendous pain and grief – actions which have only added to the emotional toll this situation has taken on him.

We are all aware that caregivers have their own unique set of challenges.  Angelo’s life was in an extended holding pattern from the moment  Jennifer became ill.  As her health continued to deteriorate, more and more of his time was spent at her side.  Now, he is left picking up the pieces of his broken life.  His career has to be put back on track.  I have no doubt Jennifer's treatment and care put a severe drain on their finances.  When public transportation is replaced by cabs because Jennifer was too weak to get on a bus or a train, and meals were brought in because there was no way a trip to the grocery story was physically possible, costs mount very quickly.

I have not followed the stories, the comments, and the backlash in their entirety.  I’ve read a few of the statements and it was troubling to have heard there were actually people accusing Angelo of somehow creating the social media backlash against TGP, presumably with a self-serving motivation.  I met Angelo briefly in New York City at that gallery event in January.  What I saw was a man motivated by love to do something that would impact the lives of others in a positive way.

I did not know Jennifer but the number of people present at the exhibit told a story in and of itself.  One didn’t need to know Jennifer personally to realize she was an extraordinarily special person.  Part of Angelo's insistence about maintaining good will no matter what happened with this particular exhibit was Jen, "She always saw the good in people and that's the way I will continue to live my life."  What a pure legacy of love shines through Angelo's words.

What’s next for Angelo?  He is grateful he has another venue despite the emotional upheaval this has caused.  Convivium 33 Gallery in Cleveland very generously stepped in to  house the exhibit for a four week run, July 27 through August 26. TGP had asked Angelo to display the photographs for ten weeks.  This raises many questions.  Now that there is another venue, some are saying, "What's the big deal, the art is being displayed."

Here's the thing:  Can TGP or any of its supporters help find another venue for those other six weeks?  Is anyone willing to step in and help with the additional costs associated with moving the art to the new venue, the costs associated with tonight's second opening reception, the fact that Angelo traveled back to Cleveland from NY yesterday to retrieve the exhibit from TGP and re-install it at Convivium 33 in time for tonight’s opening. These unexpected expenditures, insignificant to some, have caused Angelo an unnecessary and somewhat troublesome financial burden.  Repeating myself…. He’s working to put his career on track while he is doing many other things to honor Jennifer.

In that regard,  I’ve learned  that Angelo has set up a foundation in memory of his beloved Jen.  The Love You Share is awaiting approval of 501 status, but the organization has been established.  When TGP offered to host Angelo’s work, the intention was that the exhibit would raise money for both TGP and The Love You Share.  The mission of the foundation is to provide direct and tangible help to those in need.  Initially, this will include funds to cover transportation costs and gift cards to markets like Fresh Direct where groceries are delivered right to one's door – small things that make a huge difference.

Because that’s what Jennifer would have done for others…. Because that’s who she was..... And now, her legacy will live on through Angelo’s efforts.

The Love You Share…… sharing Jennifer’s love of others by touching them with grace and compassion and yes,

With Love.


Note:

I spoke to Angelo before I wrote this piece.  I wanted to be certain it was okay with him for me to write about this.  I believe this is an accurate portrayal of events based upon that conversation and the information he sent to me.  


I hoped he would have the opportunity to read this before publication.  Angelo has been on the go since we concluded our conversation.  If there is the slightest inaccuracy or anything within this entry that is not to his liking, it will be corrected or removed as soon as I have the chance to speak to him.


I thank you, Angelo for trusting me to share your story with those who read this blog.  I'm truly humbled.  I hope I have captured the essence of Jennifer based upon what you shared with me and what I saw when I looked into her eyes in every one of your beautiful photographs.  After all, this is about Jen, about your love and about her legacy.


AnneMarie

10 comments:

  1. beautiful. moving. lovely. thank you.

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  2. I'm very glad that the photos are finally being displayed in an appropriate place. I think Angelo handled this situation with amazing grace, and agree that the Gathering Place has much to answer for. I think it's wonderful what he is doing with his foundation and in providing direct patient support. Will link to it when appropriate to do so. Thanks again for hitting the mark, AnneMarie.

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    1. Ann,
      I want you to know that YOUR words here mean more to me than I can say. I am certain if Angelo reads your comment, he will be thrilled to hear what you have to say about the manner in which he handled himself. I hope he is having a fabulous opening night. From the photos being tweeted by his brother, it certainly looks like it's great. The new space is spectacular.

      As for the foundation..... That's the essence of YOU - offering to link to it when the time is right. And I, too, love his vision of putting help directly into the hands of those who need it most. I listened to the podcast of your radio show and how you talked about not asking what we can do because you'll never ask...... And you are right... Those who can, should just DO.

      You my friend, are FULL of grace and love...

      AnneMarie

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  3. Simply Beautiful.

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  4. Thank you for sharing such a beautiful story...though difficult to view at my stage it is also inspiring! FYI: NY trip on hold, might be headed to Stanford U instead. I'll be posting an update soon. Thanks for the luv you share with all of us!
    xoxo

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    1. Jen...
      I know this could not have been easy for you to read. You know I'm right there for you...

      And... did you see the video of Dr Larry Norton? Was on yesterday's blog..... I was at the seminar. Thought about you as I was posting those videos!

      xoxoxox

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  5. Ann Marie,

    Thank you for putting this all together, summarizing things so well and for getting to the heart of the matter. Mr. Merendino handled the entire situation with class. I hope the opening weekend was a huge success.

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    1. I agree that he displayed exceptional class and true grace! Me, too..... Hope it was a huge success...

      Hugs...

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