Friday, July 20, 2012

Uproar in the Blogosphere - Angelo Merendino Photos

It's funny, but as I continue plodding along in my journey with breast cancer, I feel less and less like fighting about anything. Hell, I even used the phrase, "journey with cancer" which would would formerly have me up in arms.

My, how I have changed.

So when the blogosphere exploded with the latest cancer controversy, I immediately decided to ignore it and maybe upload more photos of my dog.

I'm having second thoughts.

The controversy involves a man, Angelo Merendino, who took some absolutely beautiful photos of his wife as she went through her treatment and died from metastatic cancer.  Apparently, these photos were exhibited in a building called the Gathering Place, and because they upset the people who, uh, gather there, they were taken down. That news went viral, and everybody online who is involved with cancer in some way exploded with anger, feeling that cancer patients were being dissed or shoved aside. They were encouraged to like this gentlemen on facebook for a show of support.

Go ahead, his photos are beautiful; he honored his wife. I like him.

Gayle Sulik, his friend, did a post about it called "The Battle They Don't Want to See" saying about the pictures: "They are a vision of breast cancer that is too often sugar-coated with platitudes, sassy t-shirts, fun-filled fundraising galas. For some, this reality is too much to bear. But until we as a society are willing to see cancer for what it is, our capacity to support the diagnosed will always be limited."

Her post was tweeted and shared throughout the blogosphere as another example of society wanting to ignore the reality of breast cancer.

And yet, an important point is being overlooked.

And that that in this case, the ones who feel that the reality of these photos are "too much to bear" are the ones who actually have to bear the disease. It isn't society who doesn't want to look, it is people who are dying from cancer themselves who don't.

Speaking as one of the diagnosed, and one of the ones diagnosed with metastatic cancer, I agree with Gayle's overall premise.  In fact, almost exactly three years ago, as a cancer newbie not knowing what was to come, I named this blog "I hate pink" for that very reason - I didn't want to be part of the pink culture that prettifies cancer. Even back then, I knew it was ugly.  I wanted to detail it with words.

Yet, since I have become metastatic, since I am dying of cancer, my original thoughts have expanded.  If you look deeper into the story, you will see that the photos that were taken down were exhibited at a place called The Gathering Place that describes itself "as a nonprofit, community-based cancer support center to fill an unmet need in the greater Cleveland community. The programs and services offered address the social, emotional, physical, and spiritual needs of individuals with cancer and their support network." Reading deeper into the site, they are focused solely on nurturing those with cancer. They have classes, such as movement to help with low energy, nutrition information, caregiver classes, and emotional support groups.

In reading what it is they do, and after hearing the photos upset some patients who go there, I think it is wholly appropriate that they took the photos down. The better choice would have never to have put them up to begin with, but given the nature of their mission statement and their goal to support the emotional needs of cancer patients; given that they got complaints from those with cancer, I agree that they should not have photos of a dying woman displayed in their lobby.

But why?

As a woman with metastatic cancer, I have nowhere to go where I am not confronted with the magnitude of my disease. In my personal life, I comfort my family, telling them I'm okay, it'll be okay. Weekly, I have chemo. Monthly, I see an oncologist. It's always on my mind.   I am in pain and exhausted. I will forever be in treatment. I am going to die, and I have paperwork to do, things to finish. I look at photos of my own deterioration, without even wanting too, just by flipping an album.  I don't know any other terminal people.  I rely on me.

I am faced with this illness every day, every night, without respite. I am not really welcome at support groups as I frighten the lower stage women - I am, after all, their worst nightmare. Their concerns are not my concerns.  I can find some relief and companionship online but even on the forums for Stage IV cancer, we have the family members of cancer patients turning to us for comfort and information and all too often describing their family member's death in vivid and disturbing detail - never realizing or thinking they are asking for support from women who will soon be in those same deathbeds, unseeing and unblinking and moaning in pain, same as their loved one.

If I had been able to find a place like The Gathering Place that gave me comfort and support, maybe I wouldn't want to see those photos either. That doesn't mean I don't think they shouldn't be seen, or that I bury my head in the sand - not at all. I've looked at them, and they are beautiful. My regular readers know I have always faced the truth. But, the Gathering Place is designed for cancer patients, to find healing and comfort and a sense of peace. Maybe even a little hope. Seeing graphic photos of a woman in the process of deterioration and dying from cancer every time you walk through the lobby, photos described by Gayle as filling "many of us with deep sadness and a sense of dread" has turned out to be emotionally upsetting for many who are suffering with cancer.

I am not saying the photos aren't beautiful or touching. I'm not saying they shouldn't be shown. In fact, a few are on on CNN's website. They will be in Gayle's new book.

It isn't the photos, it's the place.  And, it's all to easy to dismiss a cancer patient who doesn't want to see them as "putting their head in the sand" but you know what?  Why shouldn't we have a place where the sand is warm and comforting if that's what we want?  We have too many people telling us how to handle our disease as it is.

What I'm saying is that maybe our "capacity to support the diagnosed" as Gayle says, includes giving us, the diagnosed, a tiny space - just one - where we aren't always compelled to confront our future.

Seems to me if liking something on facebook provides support, than "The Gathering Place" deserves that same honor.

As do I.

.

46 comments:

  1. Thank you Ann. I wholeheartedly agree with you!!! Linda

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  2. I agree with the whole idea you have here. I have HER2 so while I'm not metastatic now. The reality is I will be one day way too soon. And I do hate the prettying of cancer. I hate that every cancer patient is called beautiful. I get why it is said, but really annoying. I do understand that some patients don't want to know anything about what is killing them and they want to be ignorant of the things that are to come. But the real issue is what you have in here in one sentence. Perhaps they should not have placed it up in the first place. We know our bodies more than anyone else out there. I have told off a few doctors and nurses so in that way the Gathering Place should have known their own people. They should have understood their demographics. I assume they have support groups and counselors who should know what the population wants. And, if they don't then perhaps they need to look at their policy and people a wee bit better. I do not fault them for paying attention to their clients. I fault them for not recognizing what their needs are. And one may say that they are a non-profit who are struggling so if that is the case them maybe they need to reevaluate themselves. Again, this isn't a demonization, but a harsh reality from someone who has been ignored and talked down to within the journey.

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    1. Exactly. I have been amazed that The Gathering Place didn't "understand their own demographics".

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  3. Angelo's photos are amazing. I've been following them since before Jen passed. This scandal is ridiculous. It's like how we used to not allow photos of pregnant women. Death, sadly, is a part of life. One Jen faced bravely and with grace.

    -Angie

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  4. Escamilla, I completely agree they made an error putting them up in the first place. That was a terrible error too, they deserve the backlash just for that. Please don't be negative about your future - just because you are HER2 doesn't mean you'll be metastatic!

    Angie, you didn't address my comments. I am quite sure Jen was wonderful, brave and inspirational; that's not the issue. I've seen the photos, at least some of them, and they are beautiful. But why is this place appropriate to show the photos if it upsets cancer patients? Don't they deserve a place to not have the fact that they are dying put in front of them?

    My oncologist doesn't have funeral home pictures on his walls, even though some of us will need that information. It isn't the photos and it isn't the person - it is the place that wasn't appropriate. But if I'm wrong I'd like to hear reasoning to my argument rather than just "the pictures are good and Jen was great."

    Frankly, I wouldn't hand my blog to early stage women either knowing what has happened to me. Let them have the belief that they will escape, after all, most of them will. Not everything is appropriate everywhere.

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  5. I personally was not offended at all by the photos. This was the first I've heard of them since I haven't really been online much lately and when reading your blog I expected something much more gruesome. I'm more offended by the comment that the volunteers, many of whom are survivors, were the ones offended. I imagine surviving cancer leaves you with the feeling that you're always looking over your shoulder, always waiting for it to pop back up. I can understand not wanting to be reminded that some people don't get to be survivors. However the truth of the matter is many of us won't survive this. Many of us will have children and family that will one day be in our shoes. Millions are dying of not just breast cancer but so many other kinds and we, the ones who need a voice the most, are willing to brush this type of publicity aside because it is upsetting? Brushing things like this aside just adds to the cover up that breast cancer is all ribbons and 3 day walks and pink kitchen accesories. And if we are the ones brushing them aside why would anyone outside the stage IV community care? Images like these have the opportunity to create conversation, to create outrage and to work as a catalyst for change. They have the power to change people's minds about where they donate money, to question why we don't have more treatments after all the money fund raised. I personally would rather have people asking those questions and changing their thinking because if I want to live longer that is what it is going to take. Change won't happen by sitting quietly and pretending everything is all right, change will happen when people are outraged enough at what is happening to take action. I think instead of complaining about how offended we are by these photos or how upset we are by them that we should be inspired and thankful that this couple was brave enough and selfless enough to document and share the most intimate and heart breaking moments of their lives with the world so that people can put a face on this disease.

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  6. They should not have been posted in the first place. THAT is the true problem here! Plain and simple! What they did to him is wrong! I thank you for giving some insight from the other side. I am now looking at this in a whole new light. I pray for you and everyone else affected by this awful disease!

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  7. Samantha, you didn't read my post. I am not offended by the photos. As I said, they are beautiful. I never said the volunteers objected and in fact, if you read, it was cancer patients who objected. Finally, I am in the "Stage IV community" so therefore, according to you, I am allowed to care.

    Samantha, you think that patients like me, who have terminal disease, should never have a place that we can go to get away from it? Remember, that place advertises themselves as a place cancer patients can go for emotional support. We are supposed to just have it shoved in our face that we are dying and it's ugly, whether we like it or not - in a place that is supposed to be for us to get some peace?

    I have spent 3 years documenting my disease, by the way, so people can put a face on it.

    Future commenters: Please don't make a comment if you haven't read my post. I know that some people are coming over from facebook and my post on The Gathering Place and aren't reading my post, just commenting because I supported them - but you have to read what I say before you comment. You can disagree all you like but please read it and comment on what I said. If you don't, you will get deleted. I like real conversation, not just slam and go.

    And, you make yourself sound like fanboys. :)

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    1. Ann, while I can say that my post was a little poorly written (please forgive the ADD nature of it, on new meds that only allow me 1-2 hours sleep a night. Thought organization tends to be a little frantic) I don't think anything else I wrote didn't pertain to what you had written about. I did read not only your post but all the articles you referenced before writing my opinion.
      In your post you basically stated that while you appreciated the photos for their beauty and artistry you didn't want them in a place you felt should be a safe zone of sorts because they made you uncomfortable by making you think about your cancer and ultimately terminal diagnosis.
      First off I was not pointing directly at you as being the one that was offended, I am sorry if that came off like that but I was meaning people with cancer (early or late stage) in general. The comment I remarked about, the one about the volunteers who are also survivors being the ones complaining they are uncomfortable, came from an article you sourced. Because of this I thought it was relevant to your post and since you sourced it you would recognize the reference.
      Also while I understand your view point I was simply saying that I did not agree with it and how I felt about the whole ordeal.
      In your reply you did bring up the good point that you deserve a safe place. However after looking at The Gathering Place web page they are not just a service for cancer patients, but also for families afflicted by cancer. They even offer art therapy programs for family members which I now find a bit ironic. I don't believe that a person going through cancer has it any harder then a family member who is watching a loved one go through cancer, that is just my own personal belief though. For that reason I stand by my opinion that the photos should have stayed. If you don't want to look at something then don't, but don't take it away from the people that do want to see them.
      This was not a slam and go comment, if it was I would have probably never returned to see where the conversation on this topic had gone now.
      Also I am a little confused by your fanboy comment. Is that to mean that I am talking about things I don't understand or have a right to talk about? Since your reply seemed to be slightly on the offense I think it may be more understood about my views on this if I clarify that I am also living with mets and have been for nearly two years. So if your comment about being a fanboy (which again, I really don't know what is meant by it but despite the emoticon I'm going to assume is some sort of insult) is to mean I don't understand what I'm talking about I assure you I understand just as much as you do about living with a terminal diagnosis and all that comes with it.
      I think on this topic we will just have to agree to disagree.

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    2. Samantha, by fanboy I mean somebody who is a fan and friend of Angelo and was only posting to support him without hearing the other side. Since you didn't address my point in your original post, I thought that might be the case. Not meant as an insult.

      A small detail: The article that referenced that volunteers were disturbed also in the same sentence mentioned the volunteers were cancer survivors and that it was not only volunteers but others with cancer who objected. It was quite clear that it disturbed other cancer patients, and the fact that they are healing and volunteering doesn't make them less important.

      As for the rest, yes, we will have to disagree. In a place designed for cancer patients to get support and feel they can heal, having a photographic statement that says "you won't" would be very difficult.

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  8. I can't believe people would comment without reading the post! Crazy! I heard you and I support the fact you have spoken your opinion. Because this is your blog and you can and you have a valid point of reason. Its SO easy for everyone to have a mob mentality without understanding and caring for both sides of the argument.
    I saw these photos a few months ago and I agree they are beautiful and show a valid point of view. I also understand that the cancer patients point of view of being confronted with them as rather scary. They should be exhibited and seen. It was just the wrong setting to display them.

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  9. Ann, I wholeheartedly agree. Honestly, I think people should be able to choose the time and place when it comes to the realities of metastatic cancer. I honestly had to stop reading your blog after you were diagnosed with mets, not because I didn't care about you, but I had just had several rounds of chemo and three surgeries and I really just couldn't cope with the possibilities of mets at that point. I was diagnosed with Stage IIB at diagnosis.

    I am a year out of chemo and getting closer to a year out of radiation and I am at the level of acceptance of the possibilities of what may or may not come. The important part was that I was able to choose when, where and how much I exposed myself to that much reality. If that was photography I saw when in treatment I would have found it highly disturbing, no matter how beautiful the stories and the photos may be.

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  10. Ann, I've been following this controversy most of the day and I commend you on writing such a balanced post. (Full disclosure: I knew Jen personally as we were in the same support group and her husband is a dear friend).

    After all the publicity Angelo's work has received, I find it hard to believe The Gathering Place did not know what they were getting. And that they were given the photos in advance for approval and they still wanted to go forward with the exhibit is indeed where the disconnect arises.

    You are 100% correct that the director and staff should have been more sensitive to their clients and demographic and perhaps this was not the right venue for the exhibit. But Angelo is not to blame for this decision (nor did you suggest he was, btw).

    However, in issuing a press release on the matter, The Gathering Place had an opportunity to frame this in a much more positive light, and perhaps even offer to find a new home for the exhibit. Instead, they only reiterated their mission, inviting the criticism they are now receiving. No one called the lynch mobs out -- but much in the same way people resent Bloomberg from dictating soda size, they don't deal well with censorship and being told what they are and are not allowed to see.

    Had they turned down the exhibit to begin with, none of this would have happened. It was bad judgment on the part of The Gathering Place followed by an even worse public statement.

    All of this said, I really did like your post and your ability to rationally see both sides of this story. XO

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    1. My deep sympathies on the loss of your friend. Thank you too, for such a thoughtful reply. Maybe it's because my sister was the director of a non-profit that I gave them some credit - she was often forced to do things that she knew was bad policy by the Board. She was the one who worked day-to-day to make her non-profit the best it could be, and the board meet monthly and override decisions based on their egos. I wonder if some of that kind of behavior played here? Well, we'll never know. I do agree as I said in my post that the Gathering Place made a ghastly mistake by ever agreeing that their group with the right place for this exhibit. I do like the idea of them trying to make it better and finding another space where these photos can be seen. At the end of the day, it seems like the Gathering Place made a terrible mistake but nobody is perfect and I hope that they will learn from this and concentrate more on their mission - to serve cancer patients. Being an art gallery seems a bit far afield to me.

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    2. Ann, hope you're feeling a bit better than your FB updated suggests. Hope you know how many of us are thinking of you.

      Was not aware that your sister is in non-profit. I have friends who do as well and like you, wanted to give TGP the benefit of a doubt ... at least until I read this latest quote. This will give you a good laugh (And, it pretty much says it all, no??) ; )

      "The Gathering Place Executive Director Eileen Saffran blamed the controversy on an employee who she says used "poor judgment" in accepting the exhibit."

      Full link: http://www.cleveland.com/opinion/index.ssf/2012/07/the_gathering_place_errs_and_l.html

      XXO

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  11. At first, I was angry that the photos came down too. - it was a knee jerk reaction not understanding the purpose of the gathering place. Your comments are spot on, people living with cancer need respite. Thanks for being eloquent and calm.

    Of course the gathering place management would seem to need some clarity in their own vision. That said, we all make mistakes. The photos are beautiful and will, i hope, find another place for display. Thanks.

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  12. This isn't quite the same thing, but I was immediately bothered when my oncology office posted the cards with names of people who were being honored in a Walk for Cancer. Almost all of the people had died from cancer, and I just felt like it was inappropriate that my welcome to the office was this huge, huge wall of names of those who had died from the very disease I was fighting with chemo at the time. Couldn't help it--it just flat out bothered me and seemed wrong from a patient's point of view. I'm just thinking they didn't really consider that point of view, but in a cancer treatment center it's the one that matters. I've also seen the photos and they are beautiful, but they need a different forum.

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    1. I kept trying to think of analogys too. None seemed quite right. "It's like if the oncologist's office had brochures for mortuaries lying around." Your description is better because it shows the support that they had tried to convey, yet missed so terribly. They just flat out forgot who they were serving. Thanks for your thoughts.

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    2. I agree, lopsided. People are just really unaware of the reality of how it is to BE a cancer patient. And with all my heart I hope that they remain so.

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  13. I think what so often happens we get caught up on the band wagon, fail to see the other side. I admit to that exact thing. The photos were/are an amazing chronicle of one woman's journey with Breast Cancer from treatment to death.
    I have a friend who died this past January from a horrendous cancer that grew from one small spot on her body to this ugly monster that swallowed my friend with this tumor that grew . I have a photo of her with the her mass exposed. It's hard to look at, it makes you queasy.Would I want to have these photos displyed of my friend Cheryl? In retrospect definitely not. If I were a patient newly diagnosed trying to feel poositive it would have a detrimental effect.
    At the end of the day mistakes were made, first by the Organization that allowed the photos. Not faulting them completley.Cancer is an emotional gut wrenching experience.More often it leaves a destructive path in its wake.
    In honouring this wonderful woman Jen, we must also do the same for the others who did not find the photos comforting.Perhaps even frightening. Great post!! Love Alli xx

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  14. Personally, I think the cancer center's support of this incredible body of artwork is spot on. Displaying in the lobby? I think that was a mistake. But, if there were a room or a local gallery at which they could have been displayed, with the possibility of having a night for center participants to view the artwork, that would have been brilliant.

    I feel like the center "almost" got it right.

    These photos are amazing. Her experience was unbelievable yet totally believable. For me, some of those photos feel validating, some of those photos feel inspiring, and some of those photos are down right terrifying. Cancer is HARD, and we all make mistakes. What I hope is that the center can creatively organize an event that emphasizes the beauty of the artwork and honors the lives of Jennifer and her family while also respecting that many cancer survivors and care givers are not in a good place to see the artwork.

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    1. rleepenn (I didn't want to be anonymous, but the website refused my wordpress login....)

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    2. Well stated. Thanks for conveying this.

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    3. There's one photo where she is on the street and a passerby is looking at her as he goes by. I lived that every day. I was called "sir" at the grocery store. I DO want someone to share all of those horrific experiences for me. I sometimes need to see them myself so that I can remember I am NOT alone. I DO want people to understand and see the reality of the success of their pink ribbon purchases, but... Not in my "safe" place. :( I know that's selfish, but I've given and given and myself is all I have left.

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  15. With respect to the recent decision made by The Gathering Place to discontinue my photo exhibition, I’d like to issue the following statement:

    Throughout Jen’s devastating diagnosis, we were fortunate to find organizations that embraced and supported us, much like The Gathering Place serves such needs in the greater Cleveland community. To say that I was thrilled when the organization reached out to me and extended an invitation to exhibit my work would be an understatement. I was ecstatic to take this important work to the next level and I eagerly submitted images for approval, which I received. As such, the nature and content of the exhibit should not have taken anyone off guard.

    While I can appreciate there are people who may find some of the images overwhelming and difficult to look at, I only wish that the feelings of the clientele served by The Gathering Place had been taken into consideration before I was given approval to install the exhibition. Based on the stated mission of the organization, perhaps this was not an appropriate venue to properly showcase my work.

    That said, it would be disappointing if the fallout from this decision resulted in negatively impacting the support of present and future donors of The Gathering Place.

    To everyone who has reached out to me privately and publicly to express their dismay with the decision of The Gathering Place to remove my exhibition, I see an opportunity to channel your collective enthusiasm and energy into something positive and I ask for your help in finding a new home for these photographs that have touched so many. I strongly believe this is the best way to honor Jen’s legacy and provide a voice for those affected by metastatic breast cancer. I am grateful for your help and humbled by your continued love and support.

    ~ Angelo Merendino, creator, “The Battle We Didn’t Choose: My Wife’s Fight With Breast Cancer”

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    1. Angelo,
      My deepest sympathies on the loss of your wife. I've seen samples of the photos and they are touching. I hope you find a gallery somewhere that will display them.

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    2. Angelo, thank you. You know that you have our support and thank you for not throwing this organization under the bus for their ill-thought decision. You and Jen HAVE brought a gift to many by sharing. Even if only to be shown that we're not alone when everything is so dark and scary.

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  16. Ann, thanks for eloquently and honestly sharing your view. I have stage IV breast cancer and can understand exactly how you feel because I feel it, too. Living with mets is a big balancing act and fear of leaving my family, especially my 13-year-old daughter, is always at the back of my mind. I agree that a place of support for cancer patients is not the best place for such an exhibit. For me, I need to affirm life and not be constantly reminded of my mortality.

    I also can imagine the hurt and disappointment Angelo must feel. I think the Gathering Place made a big mistake and has done a terrible job of backpeddling. I was in public relations in my career and this is a PR nightmare.Perhaps the controversy will open doors for other places to exhibit this important piece of work.

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  17. Ann,
    Thought I'd try commenting again. I expressed my feelings on your facebook page, so I won't repeat myself here. I would like to mention again, though, that some people living with mets do feel strengthened and less alone viewing such images. The other point I'd like to make again here is that the Gathering Place is also for cancer patients' families and, in my opinion, the photos of Mr. Merendino also exemplified the deep love he had for his wife. How could it be inappropriate to show that? Ultimately, it was a very bad PR nightmare for the Gathering Place and Mr. Merendino was extremely gracious in his comment above. Thanks again for adding to this discussion, Ann. There are surely lessons for us all here.

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    1. Glad it worked this time Nancy.

      I still think you are either not understanding my point or not addressing it. The photos tell an important story. But, they are telling the story to the wrong people in the wrong place.

      You said, "How can it be inappropriate to show the love they had?" The photo display was not geared towards showing love, but showing what cancer does to a body. One of the photos, as I said elsewhere, was three photos of her in one frame, showing her deterioration. Well, I can see that in my own albums. I was shocked just yesterday to see a photo of me from a year ago and the changes since then. I don't need to see it illustrated at my cancer center, where I go to have peace and hope. I don't think my family needs to see it there either.

      The point I would like addressed is this one: are we, as cancer patients, ever entitled to ONE place where we can go and not have to stare our disease down?

      Your answer is no. Mine is yes.

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    2. Ann,

      I am not trying to argue, but I don't think Nancy was saying "no" to your "yes." I think she was saying that there are a variety of opinions on the topic, even from those with MBC. As I said below, the Gathering Place and places like that are not just for those with mets, but everyone affected by cancer and caregivers.

      Respectfully,
      Katie

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    3. Distilled down to its essence, the question here was "whose opinion should count for the most."

      Since this place was supposed to be a place of respite and healing for cancer patients and their families, and cancer patients themselves objected to the photos as being detrimental to their healing and rest, then I think their opinions are the ones who should count.

      Even if not all cancer patients objected - the ones disturbed by it were the ones whose voices should be listened to. And, ONLY because it WAS a place of respite for them too.

      Had this been placed in an art gallery, or anyplace else, my opinion would be vastly different. But, there should be one place where those of us with mets can go and have to look at our dying process, even as represented by somebody else, and that is what this place was supposed to be, and in their statement, why they took the photos down.

      I realize you and others disagree with that. I wonder how many with mets do?

      Feels a bit like an argument... :)

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    4. Ann,

      Maybe it is a bit of an argument, but there's nothing wrong with that. As I said, the Gathering Place is not just a place for people with mets, it's for all of us and our caregivers. In fact their mission says: "The mission of The Gathering Place is to support, educate and empower individuals and families touched by cancer through programs and services provided free of charge."

      Certainly one could make a reasonable argument that this photo exhibit falls in line with their mission.

      You say it all comes down to a question of whose opinion should count more. You seem to be arguing that yours should, which is, of course, your right. In the case of the Gathering Place, I'm guessing the large funders are the ones who had the final say, not you or me or anyone else.

      I think what is bothering me most about this is what I'm reading in your words, and maybe I'm wrong. But I feel like you are saying that if I don't agree with you, then I don't support the mets community, or that I'm not sensitive to your feelings. That is light years away from the truth.

      What I am saying is that the Gathering Place seems to have handled this poorly. If their mission is to support families, they certainly did not meet that mission in regards to the photographer, who is from the Cleveland area. My main point is that there is not a single right answer to your question, and not a single one of us speaks for anyone one else, or on behalf of any group.

      Katie

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    5. There is nothing wrong with a respectful disagreement! :) The issue has been solved though, they are going up in a gallery in Cleveland.

      And, I never said, nor thought, that you are not supporting the mets community by disagreeing with me; nothing could be further from the truth. What I meant is maybe you can't understand how bothersome these photos could be unless you have mets. But of course, not everybody with mets will agree with me either, I wouldn't expect that.

      I am using myself as a representative of the mets community because I can understand why many were bothered.

      The second line of their mission statement is this one:
      "The programs and services offered address the social, emotional, physical, and spiritual needs of individuals with cancer and their support network."

      And, they put out their statement about taking down the photos by saying it had upset volunteers were were cancer survivors as well as clients who were going through cancer. I don't think seeing photos of a woman dying of cancer supports the emotional and spiritual needs of many of them. If you think it does, can you tell me how?

      I think in this case, given the nature of the place, the ones who are bothered are the voices who should be heard.

      Now, they are going up in a Cleveland Art Gallery. And, if that art gallery was to take them down, then I would have the opposite viewpoint. Again, it isn't the photos, it's where they are being shown. It was insensitive and cruel to put them in a place where people are struggling to get through cancer. I don't think that is what they mean in their statement when they say "educate" - showing the worst case scenario in an apparently graphic way.

      Anyway, like I said, a soluation has been found. We'll just have to agree to disagree on this one!

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  18. I strongly disagree. If stage 4 cancer patients can go through it others can stand to see it documented so beautifully.
    I go all day everyday, at work with family, friends, coworkers and even at the breast cancer support group, where the reality of the disease is tamped down and if I chose, I can leave the thoughts of mortality behind. I believe there are many places where not only ourselves but others can "forget the reality" of cancer. I find no place where the opposite is true, except some rare honest in a virtual forum or when I google "how do you die from cancer?" Someone who was not ready to see the photo's should not have attended they exhibition. Those who needed or wanted to should not have had it taken away. The exhibition was not forever. Those who were not ready would have had the support and place they prefer back quickly.

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    1. But I am a Stage IV cancer patient. And, the exhibition was directed at me. What if I don't want to see it at the place I go to heal or get support?

      That is the point. There is no place I can go to "forget the realities of cancer." I experience it every time I move. Every time I look in the mirror. Every time I look at my child and know he will grow up without a mother. I can never, ever get away from the reality of cancer.

      But, if I want to have him take an art therapy class, or if I want to learn how to cope with no appetite (a big problem for me right now), I don't necessarily want photos to remind me that ultimately, it's all for nothing.

      Which, for me, it is.

      Anyway, I think I've made my point, more than once. I don't think I can say it any better than I have.

      It's very clear that many think that there should be no place that should be sacrosanct for us, and that in a place where I would go to try to improve my cancer situation, I should be forced to face the reality that I will soon die.

      That's where we'll disagree.

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    2. Ann -- Every time I see your pink flower I feel sad....Change it to a fresh one. I'm 2 years out -- Fingers crossed. Think of you often.

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    3. Kaye, words I will never get to say, "I'm two years out." I'm always in. So, my flower stays although I am switching it to a lighter pink that a friend took for me.

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  19. Thank you for writing. Thanks for entrusting your responses to the cancer to us, your readers, especially when we seem to be a tough crowd (see above, as you already have.) Merendino's photos are powerful and exhibit-worthy, but they are just one person's lens--and that once removed. The frames of your blog bring us even closer to the real experience since they reveal a self-portrait. How on earth does one find the temerity to argue with that? Especially, might I add, when the person in question has stage IV cancer and frankly should have whatever the heck she wants, perspective or otherwise? But I digress. What i want to say is: Thank you for writing, Ann. Your word-images are a gift.

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  20. Your argument is an important one, Ann. It provides us with a new perspective, which is what our community needs: healthy critique. Thank you for your keen insight and continued honesty. It is why I am an avid reader!

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  21. I can appreciate your perspective. The message is important, and the photographs are so very impacting – but when I think about myself during times of treatment, back when I couldn’t walk more than ten feet without pain, when looking in the mirror meant looking at a skeleton, when my emotions were already pulled so thin I thought I’d break . . . all that fun stuff we go through with cancer . . . I was not in the right mental place to deal with the ‘reality of breast cancer’.

    All I wanted was escape.

    There’s a time and place to highlight this story. The organization made a mistake in inviting the artist to display the images. With all the planning, you think someone might have raised a concern for the emotions of their clients. So for that, they certainly erred. But for taking it down, I do not think they were trying to protect ‘pink culture’ – they were just trying to protect the people who come to them for comfort and coping.

    This is a great exhibit (though a heavy one, no doubt) and it’s going to receive plenty of attention. The message will be shared regardless of this one cancellation.

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  22. Thank you, Ann. You've spoken for me as well and I can't thank you enough for that. I just wish more people were open to actually listening to what we, as women with MBC, are saying. How can anyone think we need to be reminded how this will end for us at a place where we would go for support and comfort? You're a brave woman for trying to share our perspective when so many people are determined not to listen.

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  23. I think there are two issues here: how we individually process what we are going through and how we share cancer stories with others. Some individuals, as Nancy says, find comfort in seeing their reality represented in the way Angelo did. Others find it too painful. While I do not have metastatic disease, I went through it as a caregiver with my brother before his death and then faced my own cancer two years later. My brother and I both liked raw and honest, but I realize not everybody does. That gets to the second point. If we think of other graphic imagery in art, we see ways in which people are given choices. I think the Holocaust Museum in D.C. does a great job, for example, in telling the story but recognizing that some images would be overwhelming for some people, whether because of a personal connection to the subject or because of sensitivities. Perhaps this is where the Gathering Place erred. They should have recognized which images might be hardest and given people a choice in viewing them.

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  24. Ann,

    Thanks for this post. You say above that the exhibit/the Gathering Place are directed toward you, as a woman with metastatic breast cancer. I disagree with that. I think this exhibit is aimed toward anyone who has been affected by cancer.

    We have a similar support organization in our community, and it's also not just for Stage 4 patients. It is for people during and after treatment, as well as caregivers.

    In my opinion, these pictures are important as they run counter to the mainstream image of breast cancer. Perhaps this organization failed to provide the proper context in their display. However, I think it's wrong to say that these pictures don't belong at a place like this, period. That's too general of a statement.

    I understand that you prefer not to see these pictures in that place, but I think we have to be careful not to generalize your personal opinion to the larger community.

    Thanks again for providing this space for discussion.

    Katie

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  25. Hi Ann,

    As one who cares deeply about the metastatic community, I feel a need to stop by one more time and comment on this post. Your response to my comment above was quite bothersome to me. I did not attempt to diminish your opinions on this issue though they differed from mine, and in fact, I even shared them on my Facebook page because I attempt to embrace varying and often differing viewpoints. In your summarizing response to my comment, you asked this:

    "are we, as cancer patients, ever entitled to ONE place where we can go and not have to stare our disease down?"

    You answered by saying, "Your answer is no. Mine is yes."

    This of course, was not what I was saying at all. The exchange of ideas and opinions is always good. Summarizing the entire conversation you and I had on this issue in such a trite manner, felt dismissive, inaccurate and yes, hurtful.

    For reasons I'm not even entirely sure of, I wanted to express my feelings on this to you. I look forward to more dialogue on issues with you in the future, Ann. Thanks for listening.

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    1. Nancy, I apologize if I cam across as churlish. I am merely a person having a discussion and trying to get a point across. Reading back, I fail to see anything that could be interpreted as hurtful but if you found it so, than I apologize. Nothing I said was meant to hurt anybody.

      Of course, I welcome and expect disagreement on topics such as these. But nobody who does disagree with me has answered the question that I was posing, and that was my main point: are we allowed to have a place to go, as women trying to manage metastatic cancer, where we don't have to view our ultimate fate as an art display?

      It seems to me that this Gathering Place was supposed to be that place - a place for emotional and spiritual support for men and women with cancer. In that light, ever putting those photos up was a ghastly mistake and one that they should feel repercussions for. They should know their clientele enough to know that they would not go over well.

      However, my argument was not how the Gathering Place handled the situation, as I agree with everybody when they say it was handled badly. My question is again, are certain places that we should be able to go and not have to look death in the face?

      If yes, then where?

      Nobody is answering that who disagrees with me and it was my point. I am sorry I made it so badly.

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