unfinishedthinking

According to a columnist in The New York Times, almost 60% of people do not experience “persistent sadness” after the loss of a loved one.  In fact, “surprisingly, about 5 percent of the sample reported higher life satisfaction after their loss.  They might have been in a stressful caregiving role. . .”

I hope I’m doing everything I can to reduce my caregivers’ stress—but it’s hard when I’ve got so many eager caregivers and I am so deeply lethargic.  There is, of course, no reason that anyone should trust me to do anything right on my own.  Left to my own devices, I take my nighttime medicines in the morning and then wonder why I’m tired all day.  I’m probably better off letting someone else do whatever needs to be done.

That said, I do want to leave those closest to me among the 60% who do not experience persistent sadness after I’m gone.  A couple of teary-eyed days may be OK, but as soon as possible I want the people I love to start enjoying their lives again.

We should be able to do that.  We’ve had an extended period to discuss everything we should discuss.  I don’t think there are hard feelings or unstated emotions left unsaid anywhere, and that’s good.  (Ginny asked me what I meant by that.  I meant that no one is carrying any grudges.  She says she doesn’t even know of any grudges anyone in our family could be carrying.  She’s right.  We lead a remarkably friction-free life.)

 But this does serve as a reminder that if there’s something you want someone to know, tell them.  Tell them now.  And if it’s something you want them to really believe, tell them often.

Our son^* Preston died four days after the horrible events of 9/11.   He was living in Washington, D.C., at the time, about ten blocks from the White House. I called him early on the morning of the attacks to encourage him to get out of D.C. as soon as possible.  He wouldn’t do it:  her pointed to the TV screens that were showing miles of backed-up traffic leaving Washington and Manhattan.  I told him to try anyway.  I offered to drive up and get him–a plan that was silly on its face.  On a good day it would take over two hours to get from Richmond to Washington.  Preston stubbornly refused to move.  I ended the call telling him “I love you,” our standard sign-off.  He said the same to me.  It was the last time I ever talked to him.  When his partner David called us the night of the 14^th to tell us we should probably drive to D.C. now, we did it.  Preston had had HIV/AIDS for more than a decade, so it wasn’t the first time we’d made the trip on short notice.  We didn’t expect anything dire.  We knew his condition, but had been lulled into thinking we had years.  We drove up past the Pentagon, which was bright with construction lights from the damage earlier in the week.  We went straight to the hospital.  I dropped Ginny off at the hospital door while I took the car across the street to the hotel we’d be staying in.  Ginny arrived at Preston’s room less than two minutes after he died.  I got there ten minutes later.  We didn’t have a chance to say goodbye.  We didn’t even have a chance for our standard sign-off.

I quickly came to the conclusion that while we would have given anything for one more day with Preston, it was good for him that he died quickly.  I was in the third year of my cancer diagnosis and I projected my thoughts and fears onto Preston.  I knew I wanted death to be quick when it comes for me.  You didn’t have to see the movie Philadelphia to know that death could be particularly cruel to AIDS victims.  Ten years earlier, we had deliberately moved to a house in Richmond that had a first floor bedroom in case Preston ever needed to come home for his final days.  We had a wonderful relationship with Preston, but we knew he was happier living with David than he ever would have been living with us.

Nothing about my cancer has been or will be as tough on our family as Preston’s death.  We’re not meant to outlive our children, and even when they’re in the 30s—hell, even when they’re in their 70s—they’re still our children. Preston knew we loved him and we know he loved us.  (One of the joys of having a gay kid is their gay friends—many from unhappy families—adopt you as their parents too, and tell you over and over again how lucky your son is to have you.)  Still, at unexpected times, his name will come up and Ginny or I will break out in unexpected tears.  It happened to me on a street in New York last year.  We were talking to a filmmaker after seeing his movie about a gay family.  Suddenly I couldn’t talk.  It was a total surprise.

So there was for Ginny and me—and for Jason and David—persistent sadness after Preston’s death.   If we’d had the extra weeks with him—the kind of time my family has with me now—maybe that gloomy period could have been ameliorated.  I hope that’s true.

With my ample advanced warning, there should be no regrets when I’m gone.  And that’ll make me very happy to the very end.

^*Technically Preston was my stepson, but we never really acknowledged that. I was his Dad II.

My aunts were very prolific.  Aunt June had 13 kids.  Aunt Celie had 12.  Aunt May had 9.  Aunt Kitty had 8.  Aunts Tine and Louise had 3 each.  My mom had 2;  she always regretted not having more.  (My dad, sister and I were happy with the foursome.) Aunts Frances and Madeline had more peaceful lives—their husbands were the only children they had to deal with.

 Around the same time that I was beginning my hospice program, my mom was being moved into a more advanced dementia unit at her retirement home.  I couldn’t have many visitors, so in lieu of coming to see me, we asked my many cousins to drop in on mom.  They have been amazing.  It’s a rare day that Mom doesn’t have any visitors.  She may not remember the visits, but I’m sure that’s why her mood has been so good lately.  I’ve never been one for family gatherings or alumni reunions or parties of any kind, but Mom is a funny, sociable party animal.  She likes people and people like her.

 Back in January we thought I had only two weeks to live.  The bonus time I’m getting now allows me to catch up with some of my relatives.  My sister Patti invited our Richmond area cousins to her place on Sunday.

 I wasn’t feeling good that day.  Usually I plan to have no more than one or two guests a day so I can cancel when I’m not feeling great.  But I definitely didn’t want to cancel on 25 or 30 people.

 I’m glad I didn’t.  I was a little iffy for the first half hour, but after that–and after a hit of morphine–everything was fine. It was good seeing everyone.   There were laughs and there were tears.  (I’m not the only one with cancer.)

A number of my cousins follow this blog, but they were all nice enough not to bring up my comments on religion.  My guess is, I would have heard some dissenting opinions in our longtime Catholic clan.  In fact, Patti tells me that after Ginny and I left one of my cousins asked if she thought it would be OK to send me a book proving that there’s a heaven.  I’m actually building a nice little bookshelf of religious-themed works given to me by concerned friends and family members.  There’s even one book from a total stranger.   A couple of these books have been kind of interesting.  They’re not converting me, but they do make obvious how easy it is to prove something to someone who already believes—and how hard it is to change opinions.

 I always appreciate the thoughtfulness of the givers.  And I wonder.  Do religious people get copies of Christopher Hitchens books from concerned atheists?

       A wise and precious friend is going through a cancer marathon of his own right now.  Although he points out that his odds of recovery are significantly better than mine, he has a couple of challenges I don’t have.  To begin with, one of his side effects is pain.  It’s not crippling, but it is constant and nagging enough that it makes it difficult for him to be distracted from his condition.  He also has a complicated family history that makes it harder for him to shrug off the gloomiest thoughts and possibilities.  These serve as more reminders of how lucky I am to be ADHD:  I can’t concentrate on anything for very long.

       When cancer patients talk candidly about their emotions, you hear about fear, frustration, confusion, anxiety, anger–the things you expect.  There are surprisingly good feelings too.  Friendships feel better.  The clichés about life feeling more valuable and awesome when your days are numbered are true.    I know I’ve felt all those things, good and bad.

      You also hear a lot about isolation and worry that “nobody understands what I’m going through.”  I don’t have that problem.  I think this blog has helped me tremendously with that.  For a long time I had trouble putting my finger on why this public display of me feels OK when it could or should feel uncomfortably narcissistic or masochistic.

       As I wrote in an earlier posting, cancer isn’t interesting to me.  I can’t even remember day to day what kind of lung cancer I have.  But dying is interesting–it’s a surprisingly good topic of conversation.  You quickly get to core beliefs.  Science doesn’t offer many hard and fast answers to the questions raised.  You can see why people turn to religious notions of heaven.  Is there something else?  Or is there nothing else?

      I spend most of my days now in bed or on my computer or watching tv or playing Bananagrams with Ginny.  (She’s really, really good.)  I have Ginny to talk to all the time.  But I also have another outlet, my blog.  Sending this message out means hundreds of other people are sharing this stage of my life with me.  I’m not isolated.  In fact, I’ve never been so surrounded by good people.  I haven’t got cancer or death figured out yet (this is, after all, unfinished thinking), but I’m enjoying the exploration.

       I know some people keep things like this bottled up.  They don’t want to talk about their disease or about dying.  Maybe that’s right for them.  I just hope they know that if they do decide to reach out, some wonderful people will be there to hold their hands.   At death we’re all alone.  But we don’t have to be alone in the time leading up to it.

Ginny’s tumors have shrunk another 20%.  Bam!

Yesterday I couldn’t spell Wednesday.

I knew the spelling of Wednesday was out of sync with the pronunciation of Wednesday, but for the life of me, I couldn’t remember how to spell it.  Usually when I’m at the keyboard, I don’t even think about something like that; my fingers know how to type it out.  This time I had to use a dictionary.  My whole life I’ve had a mental block about some words.  For example I’m never sure I’ve got the word embarrass right.  But until yesterday, I’ve never had a problem with the word Wednesday. 

When you know you have tumors in your brain, something like that is a little freaky and more than a little frustrating.  Is it a momentary brain fart or is it the beginning of a new stage of my illness?   I’ve never been able to remember names or faces: is it like that or is it something new?  I’ve gone blank on simple things before, why does it bother me this time?

My nurse visited yesterday.  To her ongoing surprise, I’m not showing any physical signs of deterioration.  In fact, my numbers have been steady since we started this hospice thing back in January.  So I’m determined not to let the Wednesday problem get to me.

Although I will say, the word deterioration looks funny to me.  Better look it up.

The doctor told her this morning she’s in complete remission.  The tumors are still there, they’ve shrunk in size–and there’s absolutely no activity. 

She’ll continue on the chemo program, of course, but I’m one happy camper.