Valley of Shadows

FRIDAY THE 13TH, SEPTEMBER, 1996

Today is Friday the 13th,September, 1996. I have not touched my manuscript in a year now. I had thought I was actually through with it, but I was wrong.

Very wrong. I am returning to my book with a new vigor and vengeance. This I do, because a friend of mine has died as a result of the "Damn Disease"*. She died one week ago this night, but it was only last night that her final words to us, her online friends and e-mail community, were sent over the wires and through the servers from her computer, to the CFIDS-L listserver, and on to the members of that list.*

As I began to read the final words of Joan Irving, I could not comprehend their full meaning. I did not want to comprehend them as they were written.

Here was a person who had sought to comfort me just two months ago when my brother suddenly died. Here she was comforting all of us PWC's*, and telling us all to be strong and keep up the fight for justice on behalf of ourselves and those who could not fight any longer. She was asking us to keep up the battle that she herself had been part of, but could be part of no longer.

When I scrolled down the message further, and the obituary that she had written for herself appeared, I broke down. I howled and wailed in pain and disbelief. All I could do was hit the 'reply to:' key.. and type "Oh, God, Joan No! Oh please, God, no... Joan No!..." and through my tears hit the send key. As I did this a notice appeared on my screen of new mail from the list owner, Roger Burns, re: Joan Irving.

As her friends were franticly trying to avert the terrible tragedy that her post announced, it was already far too late. Joan's husband, Brandt, had been closing down her computer and came across this last message and instructions to send it. Joan could no longer endure the physical deterioration and pain that the Damn Disease had inflicted on her. She could no longer endure the ignorance and lack of compassion from her friends and family, and society in general. She had no hope of cure and no strength to struggle any longer. So with a clear mind she decided to join Judith Curren, and uncounted others like her... and chose the calm, painless world of oblivion as her final keeper.

I cried. I howled my pain to the gods my pain, my grief and my rage. This was not just another person with the Damn Disease... this was my friend, a member of my online support and advocacy group.... part of my family. I did not cry alone. Across North America we wailed, and across the seas to the UK, Europe, Africa, Australia, and New Zealand we cried. Part of us had been cut out and taken away.

And again today we cried. We cried as we read the words, in tears and in shock, that have resounded around the world. As we realized what Joan was trying to finally tell us : We are dying, and no one seems to be care.

They don't care because they don't know, don't want to know.. or they don't think that we matter. This I cannot accept. I am alive. I matter. My friends matter. I am angry. I don't want to lose any more friends to this Damn Disease. I must do something.. I will do something.

I have my book. I will take it out and I will do something with it. This time I will not be just some single person trying to get a manuscript looked at. I have friends now, people who know people. I have my book, even if I must retype every page because I can't get my present computer to read the material in the files of my old one. This I can do. This I will do. Not just for myself... but for Joan. Her death will not be in vain.