June 2-7, 1994

I know it is January. But it is the birth month of a friend of mine who died in 1994. I have been thinking of her lately, so I thought I would share with you one of the pieces I wrote during the last days of her life. She had AIDS at a time when it was a new and scary disease. Few women had it. Few people lived long once diagnosed. She lived an unheard of almost 8 years. She was a very special woman. Her name was Joanne, but most people called her Jody.

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Day two? Or is it three? Long hours in closed spaces make it hard to keep track. The air is still.

Every room I enter has a noise. There is no silence. Even the quiet, empty rooms produce a low humming or soft rushing of what could be air, could be water. It is hard to tell. This hospital, this machine, this somehow living organism never rests or sleeps.

The keepers of this floor are patient and kind. The gentle but firm voice comes over the PA to announce that it is 9 o'clock and visiting hours are over. Those of us keeping vigil don't even blink. The nurses know we wouldn't leave even if they asked. I almost think they enjoy the company as much as we need to be here.

Everyone on this floor either has AIDS or loves someone who does. It is a strange club. I rather think there are similar clubs going on in cancer wards on other floors. The thought is a morbid comfort. We are not alone in our grief.

There are, sadly, several groups of us who seem to live here on this floor. Around the clock, day or night, there is always someone here. We are the ones waiting as the final stages of this new and deadly disease are played out on our loved ones. We wait. We tell stories and compare notes. We laugh and do puzzles and share big boxes of donuts. We cry.

The next morning one set of the vigilant is missing. We all know why. We wonder how they are doing and how the rest of their lives will be led. We wonder if we are next. Again, we cry.

We question the nurses and their choice to be here. How can one maintain any sense of hope while spending their days fighting a foe that always wins? Curiously, they find joy. Their joy is in the help they offer those who suffer. Their hope is seeing loved ones, such as ourselves, support and continue to love those whom society has deemed less than human, frightening, and undeserving of so many of life’s simple pleasures. These are truly angels of mercy. It takes a special person to live with the dying and not give into despair.

Finally, it is our turn to leave. We pack what all we have accumulated over the past days, what our loved one brought to this place. We redistribute flowers to others whose time has not yet come. We leave the last box of donuts for those who will follow our path. Again, we cry.

Final good-byes and thank you's to the staff are perhaps the most heartfelt and the most awkward. What do you say to someone who has watched you and helped you through five of the most profoundly sad and emotional days of your life, yet who you will probably never see again? Walking down the hall, into the elevator, and through the front door into the first fresh air in days is hard. You know you are entering a world that you no longer share with your loved one. You are leaving behind a place where everyone knows how you feel and heading into a world where people will say, “Oh, she died of AIDS? I didn’t know.” Then you know they are secretly questioning their relationship to you.

I am proud to say my friend died of AIDS. Although she did die, I believe she conquered the disease. In her dying, she found a zest for life that I see in few healthy people. She once told me she had become addicted to life.

These few days have been hard. Some of the toughest of my life. Despite all of the pain, I feel privileged to have been witness to the extraordinary passage of an extraordinary soul. The coming together of different people with different lives but a common love has been nothing short of amazing. I think it is quite beautiful and a testament to the life of my friend that people with very little prior knowledge of each other can support and love each other through such a difficult time.

My new life without my old friend will be different to be sure. Her presence will stay with me and the gifts she gave me will help me with the rest of my life. We will all miss her, but we will go on without her. She would be very upset with us if we didn’t.

We will probably visit another hospital before our days are through. We may even be patients. Yet there will never be an experience exactly like this one. Never a group so hastily assembled for such a sad occasion. Never so many lives touched in quite the same way. There will, however, be similar attending angels and loving friends, similar bonds formed. And there will be puzzles and donuts, laughter and tears.