Me, me, me
Having a terminal disease is definitely the sort of thing that causes people to turn their perceptions inward. We begin to think in a self-centered way, and we can’t really be blamed for that. We lose the veil of immortality that pervades humans and allows us to do extreme sports and take physical risks that if looked at objectively, are risk laden. Youth is especially immortal; it’s the various pains and reduction in the speed of life which causes older people to become more risk conscious. When we become elderly, we fear almost as much as we embrace for the most part. Losing the fearlessness of youth is common to people as they age is really all I’m saying.
But when something like Multiple Myeloma insinuates itself into our lives, that fearlessness is ripped from us all at once, rather than fading away as the years pass. We are afraid and so we look at ourselves and our situations much more closely, and to the exclusion of others quite often.
I saw one way that this manifests itself on one of the cancer forums I participate in. A woman posted about the onset of powerful peripheral neuropathy symptoms and asked for help from the group.
I read the posts that were follow-up to hers and was a bit amazed and a little angered. Rather than answer this poor woman, a whole group of people took the opportunity to talk about their various uncomfortable symptoms. Forgive me for being intolerant and blunt, but who gives a rat’s fanny about their ongoing discomfort. We all feel similar stuff and the point to the forum is to share the solutions we have found to deal with them.
I sent in a reply that contained my handy dandy neuropathy tips for the lady. Hopefully they will help her as much as they helped me, and helped others. Many people have written to me thanking me for the tip list and saying it helped them a lot. But it really annoyed me that a woman bald-faced asked for help; her post was short and to the point. Yet I saw only one post of many that addressed her issues, all the rest were “me too!” posts that are as helpful as a fish hook in the eye.
I learned my neuropathy tips from personal experimentation, websites that discussed neuropathy (many were related to diabetes), and from the very forum that this little scenario took place on. I’ve posted my collection of tips on that forum (I think) nine times now. Each time I did, it was followed up by posts discussing the effectiveness of the tips and a healthy dose of people listing their own problems with peripheral neuropathy.
I guess a part of this is people feeling terribly insignificant. It’s not uncommon for the disabled and profoundly ill to feel displaced from life, and feel that they don’t really matter to the universe. So that inward perspective they have manifests itself as Me, Me, Me in many things they do and say. It’s as if they’re screaming, hey, I’m here, look at me. See me? I matter,don’t I?
The answer I have for them, and for myself is “yes and no.” It’s ok to ask for people to notice you. It’s not okay to subjugate the needs and requests of others to do it though.
Many of the posts I see have long, long information blocks, signatures they’re called, which list out their medical history, how they felt on this day and that day, and quite often their signature has a lot more volume than their posting dos.
If they thought about it a minute or two they would realize that everyone is on that forum for the same reasons; we all share the same difficulties, fears, and obstacles. Not to be rude, but who gives a damn about the minutia of their lives as sick people? I sure don’t. If someone needs to describe their situation as background for a question, that’s great. The more information they provide that’s pertinent, the better the answers they’re going to get.
But a lot of the participants seem to think that all of us on the forum are close bosom buddies, interested in every little detail. One person is posting a blow by blow description of an accident her son had. I’m sorry her son had an accident, but what the hell does that have to do with Multiple Myeloma and how does it help the others on the forum seeking help and support for their cancer? If people want to post their reflection and ideas, then get a blog. I did and you’re reading it right now.
My point is that there are proper venues for different types of discussion. We have to remember that the participants of the various forums don’t know each other from Adam, and our only interest in one another is how one or another’s experiences can be helpful to us. So in essence, public forums are all about selfishness in the first place. We participate in them for what we can learn and apply to our own circumstance. If it wasn’t for that, no one would be out there talking.
Forums like the once I’m talking about exist for people to issue calls for help and support, and to give the benefit of people’s experiences to benefit others. It’s a quid pro quo, as Latn legalese would say. It’s tit for tat, you show me yours and I’ll show you mine so that each of us can take benefit from the exchange. It’s a simple concept, but one which is apparently often missed.
I have participated in this particular forum for a few years now. When I first joined up, the quid pro quo was in full bloom. I learned a lot and I passed on a lot of what I learned. I felt like the forum was a great medium of support for me because I benefited from it and the cost was merely telling people what I knew about whatever the topic was. But over the years I have seen a swing from a positive exchange over to a near free for all of a lot of irrelevancies and personal demands for attention, solely for attention’s sake. That bothers me because it blunts the wonderful resource abilities the forum is capable of.
Then too, I note that many who join the forum these days don’t bother to take the lay of the land, so to speak. When I joined and asked questions, I was politely referred to the forum archives. I discovered that the archives was a rich library of information, written by people suffering the exact same things I was. Today, if one suggests that people look at the archives, they’re immediately accused of telling people not to ask questions. Go figure. The posts on the archives are a pointer to a wealth of information but is treated instead as a wet blanket, ruining people’s wallowing in self importance and self pity.
I suppose all of this sounds very cold and lacking in empathy. But true is true and I see a deterioration of a wonderful resource happening. Certainly there is still a lot of value to the forums, but I also see that more and more of the “old hands,” the people with the greatest experiences and the most to contribute are receding into the background. The content of the forum has gone from cyclic to redundant in terms of many posts. The quid pro quo has been replaced with choruses of me, me, me.
It’s a shame.
