Tuesday, March 4, 2014

Another game of putting things aside, as if we'll come back to them sometime

Lots of catching up to do here, so let's see what I can get done while I'm waiting at the airport for Jay's flight to get in.

We've spent most of this year so far getting Jay ready for the experimental treatment he's going into this week at NIH.  Lots of travel, a bout of surgery and the recovery from it, and waiting waiting waiting.

I want so badly to be able to shut out the rest of life, to simply knuckle down to the things that we need to do to keep going on this treatment path.  But of course life isn't that simple nor is it that cooperative.  So we both continue to juggle with hands that get less deft every day.

Two things that are going on right now are both hard for me to deal with.

The first is the stark reality that Jay is dying, a little bit every day. It's visible now, in his energy levels, in his ability to simply function throughout a day. He's slipping further down that slide to the end of his life.

The second is something I've known for almost a year, and seems laughably obvious in retrospect. Jay & I are experiencing two very different paths in our relationship.  I'm a deeply sentimental person to start with, and am taking that trait along with me through our days.  I do my best to remember the sound of his laughter, the sharp edge of his snark, the beloved sound of his voice, the warmth of his love, the sweetness of his touch.  All of these things I can take with me into the future without him, to hold to my heart as balm once he's gone.

Jay is in the opposite place. He's living very much in the now, because now is all he has. The future has no meaning. He will not be carrying any memories forward once he's gone.  What he has now is all he has.

I remember vividly the moment when this became obvious to me.  It was last May when we were both briefly in Santa Fe, and we met with the friends he was traveling with for a quick snack and a quick hello.  As we sat in the restaurant, I was rubbing his back, and realized that I was trying to memorize how his back felt through his aloha shirt, and also realized that there was no equivalent action for him.

Every day is my stock for the future. Every day is Jay's permanent now.

Through all of the nonsense this month, I've been going through anxiety medication adjustments.  The meds I am currently on shut my emotional processing down completely.  I can feel day-to-day, but I can't process any grief.  I can't cry, even at the few things in the world that are guaranteed to make me cry no matter what.

As Jay comes back into DC, I'm in the process of tapering off this med, which is leaving me ready to burst into endless tears at the drop of a hat.

I fear this will be the way the rest of Jay's life is for me - tears and memories.


  1. Oh Lisa, so beautifully written and so painfully true. I love you both so very much. xoxo Nancy

  2. So sorry you are having these hard miles to walk. Love you. -- sally

  3. Your beautifully stark words touched me. I've also shared this with a friend who cared for her husband as he died. I think she'll recognize the experience as well.

  4. What you describe, the drinking in of experience, knowing that your life is full of potential Last Times...yes. I rubbed my dearlove's back just so. My hands still remember, powerfully. Other loves since haven't changed that, though they have changed my need to revisit it. If it helps, know that what you are doing is also living in the now, being as present as possible in it, taking in as much of it as you can hold. You are in it with Jay, and making it yours. If the dissonance is a little weird, to you or him, well, you have to store up your tools for outliving him. Even these brutal weeks at NIH are precious. They will figure in what you know of yourself, after. I'm watching these blogs with great respect and with gratitude as well, since they affirm so much of what I remember, and clarify and put into words much that I didn't have language for at the time.