(Kris Kristofferson reference)
(A chat room reflection)
I spoke via email with another cancer survivor, one I met here when I first came in to the CSN chat room, and one who is now a seven-year survivor of breast cancer. I will not get into the details of her message to me, although it was a positive one, for reasons most of you will understand.
But it got me to thinking, and, more accurately, got me to doing some reflection and some contemplation and some confirmation.
I had a diagnosis of cancer first in late August of 2005. Surgery, chemotherapy, radiation, and all of that stuff followed, of course. Some time in 2006, I guess, I first came hunting on the Internet for a place where I could do some good. I know that my page on here gives a date, but it is inaccurate: I asked them once to get rid of my page, to erase me, so to speak, and they did, although they were kind enough to ask that I reconsider. Such is the nature of chat room drama, such is the nature of humanity, I suppose. When I rebuilt my page on the site, that is the date associated then with my joining the site.
But I had been on the site and in the room for some time before that.
Not like some of the others. Not like the pioneers who helped the site to be born and to grow and to be recognized and to be known. No, I didn’t pick up on this cancer fad as early as they did :).
No. I am a neophyte by comparison.
Some of them are long-time survivors now. Some of them are gone. Cancer elicits both triumph and tragedy, after all. I advise folks, in fact, that the CSN chat room is not a good place to look for life-long friends :). If that sound macabre or unsentimental, I suppose the point is well taken, but it remains the truth. In the CSN chat room you are likely to find people that you care for and who care for you and some of them are likely to leave us.
That is part of what the room is about, I think.
I’ve been thinking about the CSN chat room for awhile now. I’ve been thinking about what it means to me, what it has meant to me, and what I think it means to others.
I don’t hang out in other chat rooms. Never have, probably never will. I have done other forums, almost all related to computer-related issues. But never chat rooms. I went into an AOL chat room when it first came on, and found everything and everybody irrelevant to my life.
It has been different with CSN, for whatever reason. I suspect that focus and maturity have something to do with it. Subject matter, that sort of thing.
I wish it had been around for my mom. I wish that my sister would get on board. I hope that a family friend will come to it and give it a chance. That’s what I think about it, what I think about the chat room and about the site.
The first time I came in, to be honest, the room was rife with talk of food and children and any issue you wanted to talk about but cancer. I am sure that most of you can relate to this :). I left quickly, and angrily. How dare those people talk about food and their lives while some of us are dealing with cancer? I was really angry. And probably insulted a few folks before I left :).
For some reason I came back a few nights later. I do not know why. Fortunately, I think, there was just one person there then, and we talked and she explained what was going on. It turns out, as you know, I hope, if you are reading this, that cancer is not the end. There is still life and living. And the people in the chat room celebrate that by their very existence. And by their mundane comments regarding how the kids are doing, and what people are making for lunch or supper. They celebrate with their puns and their sexually-related innuendo. Life goes on. Even if you are dying, life goes on. And it is there to be grabbed and to be enjoyed while we are here.
My new friend did not say all of that. I think she advised me to settle down :). Today, I am not sure what she said to me, but I knew I had a friend, and I knew I had a place. Hopefully, the CSN chat room will always have people like her, there to guide the misguided, the disoriented.
To be honest, it is rather distracting when you go into a chat room, especially for the first time, and people seem to be ignoring you, seem, even, to be ignoring the very disease they are supposedly there to talk about. It takes a while to figure out that the site is not so much about cancer as it is about life after cancer. At least, that is the way I see it. It is about life. It is about how to live when you have this disease, or when you have beaten this disease, or when someone you care for has this disease, or when someone you love has beaten this disease.
It is about life.
I have made a lot of friends in the CSN chat room. I find it odd. I have written about it. How do you make friends that you never meet? But I have. I care about these people. They are my close friends, some of them. How can that be? As I indicated to my cancer survivor friend in a return email, I have lived with and worked with computers for much more of my life than I have not. Still, it seems strange to have friends that I have not yet met. It seems strange to mourn someone deeply that I have never met in person.
But I do. And I have.
When I mourn, when I express sorrow and concern, I do so sincerely, just as sincerely as I express my great joy when they have good news. I know no other way.
(This would be a good time to talk about the fakes and the charlatans, but, truth be told, this is not about them, and even to include them is to give them space. I will say this: some of them are so lonely that they are sick, and so the chat room should probably ignore the sham and deal with them.)
I am cancer-free. At least for now. And I did not come into the CSN site for help, anyway. I came in to help, not to get help. What a surprise it has been that I have received so much help when I did not want it and did not know I even needed it. I have all of my friends that venture into the room to thank for that. I had no idea that I needed what I have been given in that room, the love and companionship, the understanding, the questions that required me to seek answers. I am wiser because of the room, and I am happier, and I have many more friends than I had before.
I had no idea that any of that would happen.
But it did.
To tell the truth, I did not need this room. Not physically. I had the best doctors and nurses, the best medical professionals I could possibly ask for. If you have read the stuff before this, you know that I have had marvelous family support, and that my friends, and my wife’s friends, have come through with flying colors. I did not need the CSN chat room.
Not for either cancer episode.
Do you know what happened? Of course you do not. When I had the second surgery, I contracted a staph infection (MSSA), and spent almost an additional month in the hospital. I had computers at my disposal, but for some reason, could get to CSN, and could get to the chat room, but could not enter anything. I could only read. I tried for the entire time I was in that joint to beat that particular ‘bug’, but could not. I like to blame it on the drugs :). The point is that the site meant that much to me, the room meant that much to me.
And only when I got home did I get the mail. So much of it from chat room people.
That is called a digression.
The deal today is that I am cancer-free. I promised myself when I first came into the CSN chat room that I would not leave it just because I was cancer-free, if I ever was. I considered that a cop-out of my original motivation. I still do. But I feel almost shameful about going in to the room to announce good news. I have come to accept to such announcements are positive reinforcement for others, that they accentuate the HOPE part of my hope and humor credo. I do understand that. It does not lessen the feeling that I am, oh, I don’t know, showing off? Rubbing it in?
Anyone that knows me knows that this is not the case, but the feeling does not just go away. And that is, after all, rather minor. I believe, in fact, that being a survivor is far superior to the alternative, and that, as I tried to suggest above, being a survivor is a great example of hope for others, particularly for those new to their plight and new to the site. I would advise my seven-year survivor friend, and my 20-year survivor friend, and all of my survivor friends, if they asked, that their presence in that room is a boon to all who seek the same results. They give hope. And, I can attest to this, they certainly provide humor.
Even the occasional loss of a friend in the chat room, while certainly sad and a cause for pause, is not really a problem with the room. I have advised people within the room that it is not a good place to make life-long friends :). I say that, of course, with my sick sense of humor intact. I am affected deeply by the loss of my friends in that joint, and I know that I am not alone.
But that is a small price to pay for having been there for them for so long while they fought the good fight, while we shared the lessons of our struggles, learned, sometimes, of our separate cultures, and held each other, figuratively, as the end drew near, if it did and when it did.
That is painful, but worth it. I mentioned that a friend recently succumbed. I maintain that the pain of losing her is not so great as the joy of having known her, of having shared time with her, of having laughed with her, of having cried with her, of having listened to her dreams and of having listened to her rejoice in the realization of those dreams.
No. That is a good trade. Not the best trade. But if the best trade I could get, then a good trade.
In the meantime, I was talking about the CSN chat room and digressed once again, although I really didn’t, did I?
It turns out that the CSN chat room is a living organism. I would not dare to compare it to cancer, but it is a living, breathing, mutating organism. It changes and it grows. I have seen this, almost from the beginning.
People leave. Some of them die, for sure, but a lot of them, most of them, I hope. leave because they no longer need it. They outgrow it. That is a marvelous thing. I have suggested to friends in the room that they should leave, that they have lives, and that they do not need the room any longer. I do not know if they were listening to me, I kind of doubt it, but this is what they did. They left. They would drop in on occasion, perhaps to get a fix (:)) and then, eventually, I would not see them again.
Sometimes, they come back after several years, just to see if anyone they know is still hanging around. Some of the pioneers still are, in fact.
In the main, though, it seems that they leave and they do not come back unless cancer rears its ugly head again or they seek someone for some other reason.
I think it is healthy to leave the room, even if that sounds like blaspheme. When you feel that you are in control, I feel that is healthy to leave the room. And those of us who linger for years, I like to think that we consider ourselves lifeguards of a sort, keepers of the gate, that sort of thing.
I say that even though I am rather a newbie myself, having been a chat room member for just a bit more than two years.
But, the room is a living, breathing thing. It is. There is a reason why people leave, even old-timers who hang on forever hoping that they can help others, even old-timers who drop in only on rare occasion, perhaps to make sure the site still exists :).
It is not always because you outgrow the room. The room outgrows you.
It IS a living thing. And it is possible to feel the pushing and pulling, and the need for certain assertive types to take over. That is not a bad thing. To resist it probably is.
The chat room is rather narcotic for me. I mentioned earlier that I came in to help, and that doing that would help me. I still believe that. But it consumes me, as this post should evidence. I need a life, in other words.
I intend to get on that now. Honey? Buy some more of that warm gel. I liked it!