Diary Post: The Hardest Work I Do

photo by emma rosenthal

Corners of My Room: photos by emma rosenthal


A week before she died, I visited poet Merilyn Murphy at Cedars Sinai hospital’s oncology wing. She lay in her death bed, gasping as cancer  stole her breath. I held her hand. “This is hard work.” I said. She wasn’t able to speak, the tubes that gave her air took away her voice. Her eyes nodded in agreement. Barbara and I had similar conversations during her final days: the hard work, the tedius work of being sick.

Not just illness, all cellular work is invisible and exhausting. When I was pregnant, I conceived in early June, allowing me the entire summer to sleep, which is what I did. I don’t think I’ll ever be that tired again, except on my death bed, which is I hope many, many years off.

There is so much to do. My family as much as any, has it’s own silent drama; the needs of those around me. I keep busy studying photography and graphic art, continue with political activism, reading and writing and more than anything else, am consumed with a home purchase, which requires a lot of attention to detail. There is so much to do before we are owners, comfortable in our new home. Right now we live , the three of us, our books, clothes and work, the cat, the dog, in a space that is just too small.  

I’ve been so busy and most days have good energy. I’ve found a medical and vitamin regimen that seems to give me a measured ability to maintain a reasonable routine, and my reestablishment in the middle class also helps. I think much of what was driving my illness was the stress of not having the resources to take care of my son, Leon or myself. How many people are crushed under the wheel of this horrible machine; how close we came so many times to losing everything.

I still have regular fibromyalgia relapses: periods of time when I can barely get up, have diminished use of arms and legs, or am wracked by systemic pain,  vertigo, brain fog; but these episodes seem to pass after a few hours, or at least within a day.

But the last two weeks were especially difficult and demanding.  I’ve been too tired or sick. The consequences are accumulative. Today was the most difficult day I’ve had in a long time. There is so much to do but most of the time I was barely able to sit up in bed. All the work I couldn’t do today will still be there tomorrow, I’m sure!

I had hoped to get at least enough energy to go to a spa, sit in a hot tub and get a massage, but I couldn’t even do that. Andy is away for the weekend. Leon made me breakfast, boiled some eggs and picked up some chicken at the store before heading out for the day. He offered to stay, but I was okay alone and I let him go.

I spent the day searching the television for something remotely entertaining. How 100 channels can offer so little, is truly amazing. Mao, our cat, came to cuddle and purr. So did our dog, Sally. I surfed the internet for home ideas, researching products, hunting out resources. The home we’re buying will need a lot of work and restoration. (Later on that one!) Much of the day I couldn’t lift my arms or sit up. I slept most of the afternoon.

Andy called between sessions and workshops. He’s in Oakland at the CFT annual convention, presenting two workshops and I would assume making a few motions on the floor. When I’m well we can go through our days at our own paces. But the monotony of respite requires a bit more. It was good to hear his voice.

Lunch was simple: canned soup.

Dinner was also simple, though I finally raised to the occasion and put rice, chicken broth, chicken legs, diced celery and onions in a rice cooker. YUM!

While dinner was cooking I got out of my pajamas, took a shower and put on fresh pajamas—Just one of those days!

It’s like water dripping or watching leaves fall. It’s like a metronome. It’s like doing time, waiting for my release from the gilded cage of my bed. It’s like parole, hoping that this time I won’t be saddled in the custody of my sheets for days, weeks or months.

I’m able to sit up and write for a bit. I have much to do. I hope I am stronger tomorrow.


photo (and mosaic table) by emma rosenthal

sickroom: photo (and mosaic table) by emma rosenthal


One response to “Diary Post: The Hardest Work I Do

  1. Pingback: Blog post updates « In Bed With Frida Kahlo

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