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Claire's avatar

Hello Suleika - I just wanted to reach out in solidarity. Similar to you, I have relapsed AML after a transplant and am currently in hospital, having more chemo and battling an infection. I feel and know the uncertainty, the realisation that the shape of my life does not look how I imagined it might. The plan for my treatment is unfolding, but no-one is sure exactly what happens next. It’s hard to manage at times. Sending you so much love and strength from London - Claire x

P.S. the list has inspired me to get out of my hospital bed and have a hot shower x

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Ellen King Rice's avatar

I’m a paraplegic. I have been for 38 years. Sometimes my limits and losses hit me like a hammer; I’ll never wiggle my toes in beach sand; I’ll never climb the Roman Steps or the Eiffel Tower; I’ll never dance again.

Although I deploy “Compare and despair” and work to count my blessings, I can still be smacked with a moment of grief and jealousy when I see a photo of someone doing something physical that I would love to do. Whoops, did I write “a moment?” Make that “An utter meltdown of mammoth proportions.” I snap at people I love and then I feel terribly guilty.

Nature saves me. The silliness of the grosbeak twirling on the suet feeder;, the clear, stained-glass yellow of big-leaf maples against a brilliant blue sky; the bizarreness of finding a purple or navy-blue mushroom growing near our home — and Pontificating saves me — I write, I lecture, I interrupt people and say, “Actually, . . . “ (Thank God it is impolite to clock a paraplegic. There’s times I deserve it).

Grief and gratitude are the swirling yin-yang of my life. I live each day on a knife’s edge. Will I get adequate sleep? Will my body ooze/bruise/betray me if I try an excursion? Yes’s and No’s pop up with great unpredictability. It’s exhausting to experience and exhausting to explain.

Then the phone chimes and my neighbor says she’s free for a bit. I strap on my leg braces and clunky orthopedic shoes and heave myself upright on awkward forearm crutches. We’re about to spend the next half hour peering under the bushes that line our short, rural road. We’re documenting the fungi in our neighborhood.

We’re up to about 200 species so far. It’s important to look frequently because many species will produce fruiting bodies that are out for just a day or two. The mushrooms are bizarre, adorable and incredibly interesting. Beauty, wonder and delight right there on the forest floor, feet from my front door. My life’s journey sucks — until it doesn’t.

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