Your thoughts on Memorial page

[kcherub]

Pinkgirl,

That is exactly what I was thinking. If I could find a way to set something up on one of my sites, I would. They just don't seem appropriate and would be hard for anyone to find (I couldn't just put a link on the home pages--one is a pregnancy loss site and the other is for my children's boutique).

Maybe the idea will come up again at another point. It was a good discussion, nonetheless.

Have a great night!

[ElaineM]

Hi,
I log on to her2support.org for the positive messages, opportunities to share information with others in the same boat and for information about new developments
in cancer treatment. I probably wouldn't log on very often if this site contained a memorial as a main feature of the site. If the majority of members want a memorial how about putting in on the list with the other things like clinical trials and other kinds of information on the left side of her2support.org entrance? Then the members who want the memorial can click on it as a choice. My other suggestion would be to create a separate her2 website for memorials.

[dlaxague]

What a sad week. I send thoughts and prayers to everyone who is hurting.

I don't post often and don't feel enough like a part of the list to be entitled to weigh in on the memorial page issue but I'm going to do so anyway. It's just an opinion, not a vote. You all who work so hard to support each other on a regular basis are the ones who should have some say.

Is a memorial page a sad thing? Of COURSE it's a sad thing - it's normal and right to feel sadness about losses. It's normal and right to want to share words and thoughts and prayers about loved ones who have died. Personally, I'm not enthusiastic about formal memorial stuff because I like to think that the most important part of honoring and loving the dead person happens within my heart - I hold them there and remember them there. But I do understand and support the need to have formal memorials. Just like funerals, they are of great comfort to many.

Is it a scary thing to have a memorial section or page? Not at all, to my way of thinking. What is scary is cancer. But we can't change the fact that cancer is scary. We CAN, however, help each other get past that fear.

When I was first diagnosed, just as many others have said, I was terrified and full of fear. Fear of dying, fear of illness, fear of dependence, fear especially for the loss that my kids would experience if I died. What helped me? It wasn't finding hope that I wouldn't die of cancer. I knew that no one could tell me whether I would die of cancer.

What helped me was finding women (and men) living with advanced cancer and living so wonderfully. Living fully and with great love for life and for each other. Online, and later in person, I met people who were dying, or whose loved one was dying. What a rich and wonderful gift they have to give us, as they share the experience and help us realize that this, too, is something we can all do, when we have to. (and of course, we will all have to - life is terminal and we are all dying) Not of course that we want have to do it, but that it's entirely do-able. Entirely "normal". Incredibly sad but also incredibly rich and full of love.

Our society does not support us well, in the experience of death and grief. Our society supports fear and avoidance, as if by refusing to recognize death as part of the cycle of life, we can save ourselves from the pain. I think that it's the exact opposite The more that we hide death (and dying, and grief) - the scarier it seems to us, and more scared we are - the more we hurt.

Sometimes when I get caught up in fear, for a loved one or for myself, it helps me to remind myself that whatever is to come, this moment right now is what I have. Do I want to waste this moment in a panic over what could happen, or do I want to trust that whatever happens will be do-able. I've learned, from such wonderful teachers - about savoring the moments and about the deep capacity for love and endurance that exists in all of us. I wouldn't have learned these things if I hadn't had the opportunity to become closer to death. I wouldn't have learned these things if others hadn't shown me the way, through their words and their actions as losses happened. I think that memorial pages, and discussions of issues around death and dying, are wonderful and healing ways to share love and support I think that exploring these issues offers more support and healing than a million posts about treatment successes. But that's just me. I do understand there are other points of view.

Debbie Laxague

[kcherub]

Debbie,

Wow. That was a great post.

Take care,

[Vi Schorpp]

Your post was so sincere and succinct. I agree that society tends to "protect" us from death and dying and agree with you that it is part of the natural life cycle. I personally think the reluctance on the part of many to have a memorial site is that this site was designed to inform and empower all who visit the site. Most of us who visited this site for the first time were filled with an overwhelming feeling of dread and unimaginable fear. To see a memorial site might stop people in their tracks. I'm not saying that's rational, but when we feel so vulnerable and afraid I think that's an honest response.

However, I do agree with you that reading of all of the members living (and living vibrantly) with this disease is very helpful and vital. What helped me to dream of a future was reading the survivors' stories posted here.

As we become part of this community we become attached to many of the members. From this attachment we follow the success and struggles of so many and become like family and friends. As such, we want to memorialize them because they meant so very much to us. I liked Lee's suggestion of a chapel, and thought that made a lot of sense.

I respect Joe and Christine's inclination not to have a memorial site. Maybe someone on this board may want to take charge of creating a memorial site apart from this board. I'm not talented enough, but I'm sure someone is.

[Marlys]

I, for one, feel very strongly that Joe and Christine's wishes must prevail. That being said I did as PinkGirl and made my own memorial page with those who have left since I joined. I, in fact, have put it in the same folder with all the pictures of TipToe so that I can cry and laugh at the same time. I loved the scene in Steel Magnolias where Sally Fields expresses her anger about her loss and Olympia Dukakis tells her to hit Shirley McClaine and I found myself laughing & crying at the same time. It is so cathatic.
Love & hugs,
Marlys

[chrisy]

I've not commented on this thread; I remember when the original thread was posted after a similarly difficult time. I agree with Becky and especially with Joe and Christine's wishes.

I have another suggestion, tho. As flori said in the other thread, we miss the opportunity for remembrance and closure we would in a real life community because we are a virtual community.

We do have a way to do this - why not set a chat room date/time. True, cyber hugs will never really substitute for real ones, but it would be way to come together, say good bye, share memories.

[ElaineM]

Hi,
The suggestions about a separate memorial page or a separate chapel where people can drop in and remember people who are no longer with us is a good idea. Those things give everyone a choice about whether or not to view memorials as part of the main her2support.org site. It would also continue to provide the information, support, sharing and encouragement the majority of the people who log on seem to benefit from whenever they log on to her2support.org. Maybe the folks who suggested the memorial page or chapel could volunter as monitors of those things.

[kcherub]

The reason I brought up the original thread was that I didn't see any final determination on it. To be honest, I envisioned that the original idea as an area on the bulletin board page, where each person could have a thread in their name, and those of us who wish to could post our thoughts there. How wonderful it would be for families of our lost sisters (and brothers) to also have a place to post and to receive responses from us letting them know that we still remember and love their lost ones?

I have wanted to post remembrances from several here on other sites, but it just didn't seem right. They don't "know" us. The inclination, and then not doing so, is the original reason I brought the thread back up when I found it while browsing.

Does anyone know if the format was the issue with not doing it, or just acknowledging that some will be lost? That doesn't really sound like I wanted it to, so I hope that no one thinks I am being sarcastic! It's just the only way I can think to ask. Chemo-brain lives on...LOL

Take care,

[chrisy]

Krista, the issue was that Joe, and especially Christine, did not wish to have that be part of this site - and that she personally would not want to be remembered that way. I'm not trying to put words in anyone's mouth, that's just what I remember about the discussion.

In the end, we have to remember that we are guests here in Joe and Christine's home - and respect their feelings about what kind of place it is. I notice Joe has not chimed in on this thread, so I don't know what their feelings are now - as I said, I don't want to put words in anyones mouth.

Speaking for myself, I believe it is important to come together, cry, say goodbye, share our favorite memories of our beloved friends who have left us. In real life, we do that at a memorial service. This is why I suggested an online chat might be a good alternative. As for remembering, I will always have my memories of the friends I've lost from this forum...I don't need or desire a memorial page to do that.

Much love,
Chris

[Bill]

Good point, Chris. We are "guests in their home". The fact that Joe hasn't commented on this resurgence of the thread indicates to me that he has already stated his and Christine's thoughts on the matter, and feels no need to repeat himself. I'm not speaking for Joe or Christine, mind you, but it just seems that way to me. They've devoted an immense amount of time and effort to this site. It's amazing. The main focus is to share knowledge and support for each other, and uplift our common spirits, not "?dwell" on negative events by way of a permanent "room". Just my 2 cents worth

[Leslie's sister]

There are so many thought-provoking posts here. It is nice to read them all. This is definitely a group of thinkers!

But, I specifically want to respond to Debbie’s eloquent post. Debbie you are definitely an important part of this list. Your posts are always so well thought out and supported. Please keep posting. I love reading them.

When I read your post on this subject, it really caused me to stop and reflect once again about the memorial page idea. Everything you say is so very true. So what is the problem? Look at it like this, you are the equivalent of a college graduate when it comes to recognizing and accepting the realities of a cancer diagnosis and the possibility of death. However, many newly diagnosed persons are like preschoolers; they just are not there mentally. They only want to see the success stories, the survivor stories, and the stories that give them hope. Then, and only then, can they see themselves as a success story. And, as Andi, likes to point out, seeing themselves as a success story is an important part of the battle. Some get to your level of thinking, some make it part way, and some never get there.

An example being my sister- I found this site within a few weeks of her diagnosis and told her about it. She finally had the courage to look at the site and “freaked out”, because she saw that some that had her same cancer were not doing well, and worse yet, some had even died. That was it for her. She couldn’t bear to look at the site. I am her eyes, if you will, her filter, gathering information and sifting out the “stuff” that she simply cannot bear to hear. She is an extreme example, but I’m sure that there are many more that, if they came across a memorial page, would agonize unnecessarily. Is it a rational way of looking at this? Not necessarily. But everyone has different coping mechanisms and I want the frightened to find comfort.

I can tell you this. The warriors with wings already have a memorial here. What I mean is this, there are women whose battle ended before I came here, Al’s Linda and Living Legend Lyn, for example, and even though I never “knew” them, I know them. I know them through their posts in the archives, posts where they poured their hearts out. So, even though I wasn’t here during their fight, I feel like I was and feel like I’m a better person for “knowing” them. And for those that prefer to avoid reading old posts, well that is ok too.

Again Debbie, thanks for a great post. I mean that sincerely. I just reread it and plan on saving it for my own personal reflection.

Lisa

[dlaxague]

What a great discussion. Everyone has made good points.

I'm not arguing for or against the memorial page idea. I do have to say that I think this site "belongs" not just to the list owners but also to all of you who love it and nurture it.

You can probably already tell that the topic of death and dying holds only richness for me. Also, of course, it holds sadness but it's a sadness with a smile of love attached. Exploring what it means to know and accept that we are going to die has lessened my fear and increased my appreciation for life. There's no reason that everyone can't move toward acceptance of death as part of the cycle of life. I want to stress that I do not mean that the process will ever become "easy". It is inexpressibly hard to lose a loved one, or to face our own death. It is sad-beyond-sad, and sometimes lonely. But it's also a time of richness and opportunity. Opportunity for love and closeness and learning.

If we could take away the knee-jerk panic in response to the idea of dying that is such a common reaction in our society, there would be much less suffering. Someone else said it, also. The way out of pain is to lean into it. Avoiding it, denying it, refusing to look at it - those ways of coping simply stuff it deeper down where it festers and hurts us and eventually comes erupting out in even more scary ways.

I think that the way to begin taking away that panic is to have calm and loving discussions like we are having right now. Gently pointing out that there can be something for each of us, in allowing ourselves to explore the topic of death.

If we believe that in order to be okay after a breast cancer diagnosis, we MUST NOT DIE OF BREAST CANCER, then we are on the wrong track. Of course we hope not to die of breast cancer, but being okay is not about whether we live or die. It's about living right now in this moment with every ounce of love and appreciation we can muster. If we focus on live/die, we miss much. We stay stuck in fear and avoidance. If we shift our focus just a little bit, from not-dying, to living right now - ahhh - it's like taking a deep breath of fresh air that fills every cell in our bodies with love and appreciation. Okay, I'm getting carried away (smile).

One more point - for those who are actively dying, and for their loved ones, this site (or more accurately, the love that is present on this site) offers much. We don't want to put such an emphasis on "positivity" and not scaring the already-scared that we shut down these people at a time when they need our support, do we? And of course it goes both ways - in supporting and loving them, we are learning and growing.

I just don't see how a cancer forum can expect to function on anything more than a very superficial level if there's this avoidance of one of the most important subjects related to cancer. Those who are too scared to read don't have to read. Sadly, they probably are not ready to receive help from any kind of cancer site, anyway. I guess that there could be a special forum where only those who have not had a recurrence are allowed to post, and discussion of fear, recurrence, and death is banned. But what a shallow and stilted conversation that would be.

Love,
Debbie Laxague

[kcherub]

Debbie,

You have blown me away. Again.

I wish that I could put my thoughts into words like that. I am going to copy your post and print it out at my store on Monday. I might even copy it to my blog, if you don't mind.

Love,

[chrisy]

Debbie,
Very very well said. As always! Death is a part of life - a birth into something transcendant perhaps. My fear of death is far less than the fear that I might fail to LIVE fully while I am here. You said it much better than I can.

Your other point, about needing to have this be a supportive place for those who are actively dying is important. It is at that time that we need each other most.

Love to all
Chris

[Leslie's sister]

Debbie:

Your posts are incredible. I mean that. What an awesome person you are and what a support you are to those having to face their worst fears. Reading your last post made me think once again about the article in the Wall Street Journal regarding Randy Paush's "final farewell"

I found the link for it:

http://online.wsj.com/public/article...174854465.html

Believe me it is well worth the read.

Love,

Lisa

[PinkGirl]

Thank you very much dlaxague for your posts. I could not agree more.

By not having a memorial page we are supporting society's view of fear and avoidance of death. I agree that the stories of the survivors who are living vibrantly with this disease are inspirational for the newbies. But what happens when those "living vibrantly" survivors die? Are they no longer inspirational to us because they died? I feel like we are sweeping them under the carpet so they don't upset anyone. That is crazy. Kate, Carol, Michelle, Nicola and Sandy were inspirational to me and important to me when they were alive. And now they are still important and inspirational to me.

I hope I am not offending anyone. This is how I feel. I really don't "get" the other side of this discussion. When I was dx. I knew that people died from cancer. I didn't join the her2support site to have anyone tell me that I was going to live to be 100 yrs. old. I joined for support and information. In the process I have come to know some amazing men and women who have become very, very important to me. I would not have been frightened by a memorial page. If I had been frightened I would have chosen to not look at it. I am starting to ramble.....

[ElaineM]

Hi,
I wasn't trying to be difficult when I suggested the folks who suggested the memorial page volunteer to monitor it. It is alot of work to build, update and monitor a website or a part of a website. We don't want the folks who do that for us on the her2support. org website to have more work. They do an incredible job for us already. We are blessed to be the recipients of their hard work and dedication.

[sarah]

It's so sad we've lost some more members.
I am in favor of a memorial page.
I do think it should be in a separate area to the main forum page because newly diagnosed people may be too frightened seeing it too soon. Any way to restrict it from new members until they've progressed to "older" members?
I think of so many of the members who have passed and their caring families as friends, I would like to see their names remembered with a photo of photos. Perhaps it could stress their lives, what they did, hobbies, family etc more than just born and died dates. maybe even avoiding the past tense? They are still here in my mind, just silent. I think the families who have lost someone would be the best ones to decide the appropriate page. I also think it might help the families with their grieving to know how much we all care about them that we want to visit the pages to remember them fondly.
hugs and love to all, especially those of you who have lost someone dear to you
sarah

[PinkGirl]

Sarah,
I am certain that there would be a way to
prevent anyone from seeing this memorial page
if they did not want to view it.

With all of the boards, threads and posts, we
have to "click" on them to open them.