I got a note from Andy a little while ago that totally made my day, telling about his having taken a walk outside of the hospital, at last, on a beautiful day, wearing his “magical scarf.” There’s nothing like a knitting recipient who loves what you (and Tina!) created to make you want to create more. I offered to knit his wife a shawl or scarf, whatever she’d like, asking for shaping and color suggestions. I wanted to get it right. I wanted them both to feel supported and thought of. The family of the patient has it, in some ways, harder than the patient. They need not to be forgotten.
I was going to dye something from my stash, but when I heard back, I knew none of the base yarns I had would quite get to the colors she liked. I went to four yarn stores, searching.
The last one I went to, walking through it, wishing for lace or fingering weight in a nice soft yarn in just the color, why doesn’t anybody carry colors that–
–there was one. One only. It leaped out at me. It screamed, I am THE shade! Right, yarn, tell me, how do you know? But I just knew. And it was so soft. So perfect.
I still, no, no way. I can’t…
I stood there in Creative Hands in Belmont, then, flashing back to the Crohn’s of five years ago: lying on my side in a hospital bed, too weak to hold up the edge of the page I was trying to read, too far gone to register a lot of what it said anyway: every lab mouse that sneezed was written up in those pages. But my husband and I needed to understand what we were deciding on. The doctor had his (positive, it turned out) feelings on the subject, but he wanted our input before telling us his gut feeling. The side effects of the experimental med being proposed included MS and lupus. (Hah. Beatcha.) Absolutely not to be given to patients with those or any neurological diseases, since it damages nerves. It depresses the blood pressure. (Great. I’d already done 63/21 once, memorably.) And on and on. My lupus had killed off the previously-working main nerve to the right side of my heart; there, as far as anybody could guess, would go the rest.
And I utterly knew in my bones that that med was the door to life for me, and not to risk it would be to die. I was so close. Whatever the outcome, let it happen, I wanted to live. I fully expected never to be able to digest food normally again and to be on TPN (tube feeding) for life, but if that’s what it was going to cost, I’d take it. I remembered my friend Neil’s dad with much gratitude, telling me that getting a pacemaker was no big deal. You just do what you’ve gotta do.
I stood in that store, knowing that one does not choose something like a bone marrow transplant except under circumstances where it comes down to the simple choice: I want to live. Remembering not knowing how I was going to find the strength to take the next breath. Nor the next. And my doctor coming in just then, needing me to live, imbuing me with that strength I needed so much simply by his caring presence, in a way I cannot begin to describe.
It was one of the defining moments of my life: our presence and our caring matters. It matters.
And the med worked. Pass the Green and Black’s mint dark chocolate. That small frivolity became a great joy.
I stood in that store, flashing back to Andy’s words: his trying not to complain, his briefly mentioning the fatigue beyond fatigue, his thanking me for recommending the book “100 days” by a doctor who had had a bone marrow transplant too, someone else out there who knew what it was like. Fatigue beyond describing to the living–Andy only barely touched on it in his note, but it was okay to tell me. I knew it well.
I pictured how that exquisitely soft yarn would beckon Andy to lift his tired arm to put it up around his wife’s shoulders as he continued to heal, finding both strength and softness in her presence.
I mentally apologized, and am still doing so, to every person I’ve ever knit for who didn’t and won’t also get a project made out of Jade Sapphire–but hey, please know, you’re in good company. I’ve never sprung for it for me, either.
Although, you know? Truth be told–I guess I just did.