Make room for joy, especially when it isn’t easy


I’m an old ER nurse so please, trust me when I say that nobody gets a guarantee with this life. Nobody really knows what’s next, and indeed, everything CAN change in an instant. Even for the healthiest. (This is why the legislation torturing the elderly and disabled makes me livid. People who favor that legislation are poisoning their own future. Everyone who lives long enough will become disabled.)

The point is this: it ain’t over until it’s over. If you’re still breathing, you still have a life, you still have choices. If you’re still alive, you have some influence over the next moment, and the one after that, and the one after that. Only you can decide where to put your focus, for each breath of this life that is left to you.

Being aware in the midst of the hell is what capable spoonies do, and we find a bit of heaven in it whenever we can. Yes this sucks like nothing we could have imagined, and I have a crazy imagination; but I still KNOW that there is a lot more to my life than this pain, this weakness, this utter destruction of everything I thought made up my life.

Turns out that was all peripherals. When the structures of my life were utterly destroyed, I looked around at the blasted rubble that was all that remained of my old ideas of my work, my abilities, and myself. I wondered who I was.

And I realized I was the point of awareness that was doing the asking. I also realized that, without those assumptions holding me down, and despite the agony and unbearable loss, somehow I was free, I could be more simply and purely myself.

So now I’m on groups for this brutal disease, wanting to give comfort, but knowing the only really true thing I can say is, there is comfort to be had, but it’s up to us to make room for it in our lives, to push right past the pain and fog and grief to look for the rest of what this world still has to offer.

There is excitement and peace and ease and delight in this life, but we have to find ways to make room for it, to find time to notice it, even in the ongoing roar of this pain. Over time and with practice, we get better and better at the peace and the joy and the loving connections, and .. it’s not that the pain is any less, because the rocketing nausea these past few days tells me otherwise, but it doesn’t matter as much, because more important things have taken its place in the core of our lives.

Easier said than done, but it’s basically a matter of practice. It doesn’t come naturally, and nor should it, because anyone who responds to getting a leg ripped off with, “Oh, what a lovely flower!” is probably not going to survive to raise offspring.

"Lovely flower, ladies!"
“Lovely flower, ladies!”

Being frantic in the face of horrible pain is a good survival mechanism — as long as the pain subsides when it should. For those of us who live with that kind of pain, we have to learn to re-program that core survival response (!!!) and be more mindful about how we deal with life.

Find excuses to celebrate. Finished the dishes? Celebrate! Heard from a good friend? Celebrate! Is it Tuesday? Good enough reason — celebrate! It sounds trivial, but it works. It makes your brain stronger, bit by bit. Each success prepares you for more.

In the Years from Hell, when I didn’t think I’d live out the year for a number of years, I was utterly wrung out with misery, and I refused to accept constant grimness. It was intolerable, literally intolerable; if I left my thoughts to dwell in it, I’d have had to finish myself off.
me-fingers-2up
I turned my attention to whatever was not misery, and sucked the juice from it.

I noticed every sparkle of light on the water, every flicker of color in the tiny wildflowers in the grass, the way trees spread and shake their branches, the caress of the air on a fine morning, the particular blend of colors in every sunrise or sunset I was up for, the way the sky and sea reflected each other in every weather.
clouds_water_calmBay_web
Maina at sunset, with masts sticking up and reflecting down, both water and sky streaked with yellow, orange, gold, and purple clouds
I got to learn the habits of the birds, from the imposing night herons to the unearthly blue herons, rare goldfinches, raucous terns, fat geese, chatty ravens, and the everlasting seagulls. I noticed the weird little shrimp living in the greenery below the waterline on the docks. When I could, I got up on shore at sunrise around the equinoxes to see the incredible light-show as the San Francisco windows were lit up by the first liquid rays of the sun, a dappled bank of golden glory marching up the hill across the Bay.

I was like a seagull for joy, pouncing on every bit of it indiscriminately. Time enough for the grey grims when there was nothing else to find. I leaped on every chance to find some beauty, some moment to get lost in.
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Sometimes I was disappointed: sometimes the weather soured; sometimes a friend wasn’t answering the phone; sometimes a dash of color was a piece of garbage, not a flower. (I still pick up random garbage when I’m out.)

Working to find bits of joy was probably the most important tool in getting me through, because I could use it every day and it didn’t depend on anyone else to work. Fortunately, things did eventually change, and I was there to rise with that tide.

I trained myself well. To this day, I find myself stopping and staring when I see sunlight or moonlight shining on water.
full moon clearing clouds over illuminated Bay Bridge, all reflected in the black water
It’s the most beautiful thing in the world to me. It saved my life day after day for years, so that probably makes sense, eh?

Be greedy; work at finding beauty and joy. It’s good for you. If nothing else, it pierces the veil of pain and frustration and it reminds you that there is a larger world, one worth getting to. Your old reality may be gone, but there are aspects of the new reality worth cherishing. I hope you all find the beauties that make you stop everything, just so you can get lost in them and soak up the joy.
glee

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5 Replies to “Make room for joy, especially when it isn’t easy”

  1. Thank you for an awesome post. I thoroughly enjoyed it. I too have been working really hard on this the last 6 months and I think it has made a huge difference. I did have a ketamine infusion that finally gave me a pain holiday and just getting a break for a couple of months has really changed the game for me. Thank you again. I will definitely share your article. I think it can be extremely helpful for others without chronic illness in their lives too. Wishing you a good day. Regards Sharon

    1. A pain holiday at the right time can really shift things, eh? Just having the slack to breathe and reboot our minds can make us so much stronger.
      Here’s to more joy 🙂

  2. Thank. you….
    I, too am a nurse, LPN of over 20yrs. I spent 3yrs working in ER…I’ve done nursing homes, clinics, jail nursing you name it. I never thought this intensity of pain could be even possible.
    Thank you for your words. Iam going to work steadfastly & diligently heeding your advice.
    In appreciation, Cara M.

    1. I’m so glad it gave you something to work ahead with, Cara. You’re tougher than this disease, that’s for sure. Sending heartfelt wishes for many moments of joy.

  3. Thanks for this post. It’s been helpful to me in the past week or two. (I found it 2 weeks ago.)

    It’s good to have positive things to focus on, as our mind follows our focus. Nature is great for peace and joy. Thanks for the beautiful pics.

    I especially like your line:”There is excitement and peace and ease and delight in this life, but we have to find ways to make room for it, to find time to notice it, even in the ongoing roar of this pain.” I may need to post it on my fridge!

    Thanks for sending this out for others in pain to see. Hope you are as well as possible.
    ML

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