Thursday, June 24, 2010

Not While I'm Around

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At some point these late nights need to come to an end. I've been so busy each day, trying to keep up with all the demands that this major upheaval requires. This afternoon was spent dragging my daughter through the final steps in getting her bedroom all packed up. Then it was rushing across town for a farewell dinner at our favorite Mexican restaurant. And back to the house, to pack up the majority of my oldest son's bedroom so that it can get painted tomorrow.

It's kind of sad. Every time one of the kids leave their bedroom, I'm in there dismantling it. I found myself a little emotional when I had to take apart Michael's computer and desk, which was set up in my son's bedroom. Knowing that Michael was the one who put it together, and that now I am taking it apart, because he is no longer here was making me sad. In the car I had another of these moments when my son Dante asked me to play the show tunes CD mix I keep in the car. It was filled with songs that I downloaded late one night last year when I couldn't sleep. Michael was fast asleep, and I was feeling sad and restless. I remember getting out of bed in the middle of the night, and downloading songs that I found soothing, or inspirational. I had Michael in mind when I selected each song. Later Michael and the kids loved the mix, and we often all sang along with it.

I'm sitting here thinking about my daughter, upstairs, crying on the phone. I have a feeling that will be me in the coming days, and I will have to begin the process of letting go. I won't be on the telephone, as I don't like to talk out my feelings while crying. My style is to be by myself, feel what I need to feel, then write about it.

You know, my mind keeps going back to the CD mix. The first song I have on there is from Sweeney Todd. The song is called "Not While I'm Around." I used to sing it to Michael, and it became a song that kind of exemplified my resolve to protect him from all things bad. In the end I had to face the fact that I was no match for cancer. But I also came to realize that once we knew that the battle for survival was lost, the new harm I was protecting him from was suffering and fear. I don't necessarily feel defeated at this point, more like resolved with the fact that I did the best I could for him. I just don't know what to do with that need in me to continue taking care of him. He's been gone nine months, but I was his caregiver for the two years of his illness. I remember the funeral director telling me to expect that it will take twice as long for me to stop feeling the need to take care of him.
I need to be patient, I know.

Look to the Playlist on the right to listen to the song choice.

"Not While I'm Around" - from Sweeney Todd

Nothing's gonna harm you, not while I'm around.
Nothing's gonna harm you, no sir, not while I'm around.

Demons are prowling everywhere, nowadays,
I'll send 'em howling,
I don't care, I got ways.

No one's gonna hurt you,
No one's gonna dare.
Others can desert you,
Not to worry, whistle, I'll be there.

Demons'll charm you with a smile, for a while,
But in time...
Nothing can harm you
Not while I'm around...

Not to worry, not to worry
I may not be smart, but I'm not dumb.
I can do it. Put me to it. Show me somethin - I can overcome.
Not to worry, ma'am.

Being close and being clever
Ain't like being true
I don't need to,
I would never hide a thing from you,
Like some...

Nothin's gonna harm you. Not while I'm around.
Nothing's gonna harm you, darling
Not while I'm around.

Demons'll charm you with a smile, for a while,
But in time...
Nothing can harm you
Not while I'm around...


  1. As you know, I'm doing the reverse at the moment. I just finished painting the lower level of this old house, and have been re-assembling furniture and unpacking belongings each day for the past week. There have been weird moments. Putting together the pine ikea wardrobe and bookshelf units felt strange as Don and I assembled them together the first time round. What I find strange is how doing certain things make me feel like no time has gone by -- sort of like I have tapped into some direct telephone line stretching back 5 or 10 years through time to a particular afternoon. Unwrapping our pottery collection has felt much the same too, especially a large covered jar - a magnificent piece, but our very favourite potter - that used to sit beside Don's chair. I get that old "how can this be here now, but Don isn't?" feeling pretty often - the same feeling I wrote about on my blog after visiting the huge redwood stump on the beach where I photographed Don in 2006. Objects become landmines waiting to be trod upon.

    I do believe it's hard to get over the whole caregiver role and everything that goes with it. As you've written about above, you assume a certain role - of being a protector - fighting off cancer like the commander of an army. I remember forays to the ER and the later trips to the chemo lab feeling like I was preparing for the invasion at Normandy. Later on, it was in finding ways to help Don to deal with his impending death. Unfortunately, the most terrible part of all of this (for me) was that I went through almost the same thing, step by step, caring for my Dad until his death from kidney cancer. In the final weeks, he began to have hallucinations of a giant insect with a sickle hiding behind the curtains in his room and I'd have to open the closets and move the curtains while he watched. My Dad was an incredibly brave and fearless man, but it unnerved him to think there were these creatures hiding and waiting to strike at him. Similarly, Don would wake me where I lay on the sofa next to the recliner chair he slept in - to ask me if I thought he was controlling the hockey players on a hockey game, or the actors in a movie he was watching on tv at 2 in the morning. We would talk about what he was feeling and why it made him feel upset. I don't think you go through all of this stuff and come out the other side without being incredibly changed - especially when it goes on for many months and becomes your way of life. When it's over, it's not like that part of your life is suddenly erased. As in so many cases, the most recent events are what seems most real to you - and it takes time to put distance between you and those events. I've given this some thought - about why it helped me to travel and live elsewhere immediately after Don died - and it was to create the distance I needed to leave those events behind. Unfortunately, returning to my house to sell it last spring, had a very bad effect on me - as though I had walked out of the room for ten minutes, but now walked back in again. The hospital nightmares returned, and a heap of other difficult psychological stuff returned to haunt me. Last winter away again, I regained a lot of my stability and healing. I must admit that being back here in the east and having our stuff show up at this house has been a bit hard -- but I'm dealing with it okay. Enough time has gone by that I don't feel the pain as much as I would have a year ago. Also, I'm just caught up in this new part of the world and trying to make a life here - and soon enough, I'll be back in the desert for the winter. More time and distance between me and those long months of being the ever vigilant caregiver. I have had to relearn to be someone else and not let that role define me and my life. Slowly, I am becoming that other person I once was - or, perhaps more accurately - a different person than any of those people I was in the past.

  2. i know how difficult it is to go from being the main caregiver to nothing. i was 20 when i was the "head nurse" so to speak. when my mom died i was lost as well as bereft. my dad did not need me as he dated then married another woman within 6 months. so i very much understand the feelings you are describing.

    you seem to have a handle on what you need to do to get back to yourself. i hope writing about it is cathartic. what i really wish is that none of us were here because none of us had this terrible commonality.


  3. "how can these things be here, and he is not?"

    So incredibly bizarre, and not okay. How am I typing the same password into the same bank account, how is even that little random detail still the same, and he is not here.

    Love is what is lasting, love is what is real. Yet, these tangible material things are still here. Messes with me very much sometimes.