Wednesday, August 02, 2006


The following is from my Caring Bridge site:

I have been thinking lately about this whole “on-line journal” thing that I have been doing over the last three-plus years, and what it means.

To me, it is a way of sharing the pain, the frustration, the joys and the sorrows that go with living, loosing, and parenting in this family of mine. It is a way of moving some of the pain that is inside me to the outside, a releasing of pressure if you will. This sharing is something that we used to do better I think, when communities were smaller and more contained. We, as humans, spent most of our time (in historical perspective) living in tribal groups and small villages where everyone knew everyone and sharing was as automatic as breathing.

It is only recently that we have gathered into mega-villages and have lost the ability to share easily. Until now that is.

The “net” offers us the ability to reestablish communities, albeit virtual ones, where we can share our stories, our good times, our bad. In some cases, these communities are closed and by “invitation only,” such as the Caring Bridge sites. In other instances, the communities are unlimited in access and worldwide in scope, needing only a computer and an internet connection for membership. The whole concept of “blogs” (web logs) is one of virtual communities forming around ever shifting loci of common interest.

I have benefited from both kinds. Over the past three-plus years, I have shared our story with an extended family via the Caring Bridge website, a resource provided free of charge to those experiencing a debilitating illness. I can’t imagine going through what we have without this resource. It has been a way of keeping friends and family informed about our situation regardless of the miles between us, or the time zones that separate the reader from the writer.

It has also provided a means for this extended family to communicate back to us via the guest book, to let us know that they are out there and that they are with us in our journey, even if from a distance. This knowledge has helped us more than any of you will ever know, for sometimes, when times are dark, it is only those little lights shining from a distance that let us know we are not alone. While it is true that we must walk our individual paths alone, knowing that others are walking alongside of us makes it a little less lonely.

Not so long ago, I began to write an anonymous blog using one of the free blog hosting sites found on the web. I did so because, as wonderful as Caring Bridge is, there were sometimes thoughts, feelings, words that I needed to write that were unsuitable for the CB environment. So, I began to write these things down using a pseudonym in the larger, unrestricted global community of the web.

As I did so, I began to find new connections out there – people who, like me, were writing of their lives, their trials and tribulations, their loves and their losses. It is another form of communal sharing, only a bit more on the anonymous side. I have made connections there that might, in time become real friendships, where the anonymity is put aside when there is sufficient trust established.

The one blog I started quickly became two, and now three. Each one devoted to a particular focus. I find my curiosity aroused to see who drops by those “public” postings and who might leave a comment behind. Just as I write and publish in the “blogosphere,” I also have a list of blogs that I visit on a frequent basis to see what is happening in the lives of my new “community.” I need this sharing. I need it more than ever now because I am alone in my “physical” house.

Oh, I am not alone in that sense, for I have K and J and Sophie, but they are not adults (or even human in Sophie’s case) and don’t understand the pain and loneliness I am going through. My family is there, but they too are involved in their own lives, their own partnerships and cannot relieve the ache that I feel. Indeed no one can.

But through writing, through expressing this ache, I pass a little of the pressure off, and through reading of other’s lives and loves and losses, I feel not so alone. Sometimes I leave a thought on one of their guest books to let them know that they are not alone either. It does not take their pain away. It does not take mine away. It does however, share some of that pain, and in so doing, eases it a bit.

So, there you have it, my thoughts this morning on sharing and community. Before I go, I want to let you know that I am grateful for all who have called or written regarding my recent postings that talk about the stress levels in the family. I am going to try to lighten up a bit with the kids and not feel so territorial with them.

The remainder of the month of August will be interesting on several accounts. I am currently doing another round of chemo. This is the same treatment I did ten years ago and if I can get the same kick out of this one as I got then, I will be more than satisfied. This is unknown however and I remain optimistically realistic about the possible outcome.

What is known is that I will become increasingly fatigued as this week goes on (I go into the clinic daily for five days of infusion and by Friday, I am dragging butt). It will also do a number on my immune system, which has necessitated the beginning of two prophylactic anti-infection medications. My platelets will also drop so I’ll have to be careful around sharp blades. I could bleed to death when I inevitably skin my knuckles working on my car (just kidding).

Today is day three of the five day cycle. So far, so good though I feel the syrupy touch of old man fatigue not far away. House work is going to suffer.

The barrage of paperwork continues related to the settling of C’s estate. I have to force myself to make the daily calls and review the “to do” list. Yesterday was a lost day though because of dental appointments in the afternoon for the kids.

The hellish temps and humidity finally broke yesterday as we got some long overdue rain. It is still grey and cool this morning. It was so nice to crack the bedroom windows last night and to awake in the pre-pre-dawn hours to the sound of water falling all around (only outside fortunately). I was a slug and stayed in bed until quarter to seven.

Well, OK, enough. See you next time.



Blogger Queen of Ass said...

I'm glad to have shared it with you, even what I've seen so far.

8:14 PM, August 02, 2006  
Blogger Sister Spikey Mace of Desirable Mindfulness said...

Rooting for you on the chemo. Chores can wait.

9:26 PM, August 02, 2006  
Blogger lime said...

your comments on communities in times past vs today hit the nail on the head. 4 years ago i came online feeling very lonely and was shocked to find how i could form a bond in this medium. i've also been so enriched by the people i've met. challenged, enlightened, inspired, instructed, encouraged. it amazes me.

as for your chemo my sincerest hope is that you derive the best possible benefit with the fewest possible side effects.

10:28 PM, August 02, 2006  
Blogger Tiffanie said...

It is amazing to me the "friendships" that can form over this medium. I sometimes have laid awake in bed wondering about different people I have "met" on here. You are included in that and I have checked your site several times just waiting, hoping for an update.

10:57 AM, August 03, 2006  
Blogger John Cowart said...

I never know the right thing to say when I encounter someone who is in pain. I think that as a Christian of sorts I'm supposed to offer some word of comfort and encouragement, but the only thing that comes to my mind is "That must be a bitch"!

6:07 AM, August 04, 2006  
Blogger Cheesy said...

{{{{{{{[ D }}}}}}}}}}} just thought you could use one... and I know your pain hun.. Believe me.. writing helps... go hug your children.. they are a part of the both of you. [just finished reading your lovely letters] You were blessed with them for a reason. I know mine got me thru the hard times.

9:44 PM, August 18, 2006  

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