July 27, 2009:



Last Friday, my friend Betsy and I had our monthly Zuni restaurant lunch. Afterward, as I was about to get out of the car and head up to my apartment for a mid-afternoon nap, I gave Betsy a hug, told her that I loved her and started crying, saying, "I want more. I want more time with you. I don't want this to be over." A couple of days later, we were talking on the phone, and I told her how important it was for me to get in touch with those feelings of ending and loss. "It's not just you," she reminded me. "We feel that too. All of your friends are having to cope with losing you too." Whew, I needed to hear that. One of the murkier aspects of this cancer is that it can narrow me into narcissism. This must be all about me. Well, no. On the feeling level my terminal illness is happening for all of us. I was so grateful that Betsy was there to remind me of this collective fact.

Which caused me to start thinking about anticipatory grief. It's a term that was used a lot, and with good reason, during the height of dying during the AIDS epidemic. All of us had friends who were ill and not getting better, and all of us, PWAs and their friends, were in prolonged states of ongoing anticipatory grief. To refresh my memory about this topic, I googled it and found the following definition:

Anticipatory Grief: The normal mourning that occurs when a patient or family is expecting death. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by by the patient and family.

Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death. It gives the family and friends more time to slowly get used to the reality of the loss. People are able to complete unfinished business with the dying person (for example, saying "Goodbye," "I love you," or "I forgive you."

Anticipatory grief may not always occur. Also, it does not mean that the person feels the same kind of grief before the death as after the death. The grief experienced before a death does not make the grief after the death last a shorter amount of time.

The definition goes on to talk about the difference between anticipatory and unexpected grief. In the latter, dying is not expected and the mourner has to deal with levels of overwhelm and severed connection that are far more radical than the measured, interactive continuity of life with a person dying over time.

What Betsy reminded me of was that this is a communal event. Because there's time for process, reflection, conflict and resolution there's time to undo old patterns of behavior and find new ways to relate. That will certainly be the case with me. And as I hear from more of you about how you are coping, the feelings of stunned numbness, confusion about why I am approaching my illness in this way, fear, replaying other deaths, anger, etc. the group creates a field of feeling. At this point tonight, I'm most aware of how anticipation allows for an easing into more of this illness without clobbering me senseless. It's a stepping in and out. A trying on. Testing. The luxury of being tentative. Nothing final yet. But the need to start facing final.