The Hardest Part, Surprisingly

I love that folks have been asking about both Gloria and me, as Gloria waits to receive her lifegiving new kidney and I recover from my kidney transplant surgery of December 16. She and I are challenged yet in good spirits. In this post I’ll give updates, especially on what’s been hardest for each of us.

First, Gloria. A kidney ”offer” for her came in to Dan, our kidney coordinator at Legacy, shortly after my transplant surgery activated Gloria on the Living Donor list (that’s how paired donation works). But Dan saw, via imaging, there was too much plaque in that kidney’s arteries, so he declined it. “We’re waiting for a better kidney offer to come in. 60% of people on this list in the past two months received their new kidney within 45 days.” She continues thrice-weekly dialysis, which is exhausting. For Gloria as for Tom Petty, the waiting is the hardest part.

“Was there much plaque in my arteries”? I asked Dan, since this aspect was new to me. “No, not at all.” I just nodded, but was secretly pleased. I suspect my decades of running helped produce the artery health that have landed York, my former left kidney, in the body of the woman he is now serving in the Bay Area. Ooh-rah. (York is named York after the only Black member of the Lewis and Clark expedition. He went bravely into new territory. He was maybe a runner too.)

Gloria and I recently did a magazine interview — it was fun! — about our shared kidney story.  When the article is published I’ll give you the link. Our shared goal is to raise awareness on the lifegiving nature of both donating kidneys and actively asking for a kidney when you’ll die without one. The asking can be harder for people of color, partly due to generations of painful history with the medical establishment, and resultant distrust.

I’ve been trying to avoid my hardest part because it hurts like hell, but at some point the jig is always up with these things. My emotional pain has been harder to bear than the physical pain. Medicine can reduce physical pain at least some of the time. Emotional pain, not so much. Let me explain by telling the good part first.

People’s support has gone straight into my heart like lifeblood. Dozens of people have shown support, from short, warm texts to phone calls to multiple clicks on my newsletters (writers love these). People following my request to subscribe to Anti-Racism Daily. Flowers and dinners arriving steadily on our doorstep. Post-surgery has been like the best possible version of dating, but with a whole community, and already having a husband. My last post, on Christmas morning, was about going apeshit with joy upon learning of my transplant’s success. An hour after I posted, my friend Kelly texted me that she and her family “laughed and cried and keened along with you. . . . We love you to pieces and we also love the whales”.

Lifeblood. Into my heart.

But signs of indifference to my mission have shot straight into my heart like arrows. It’s a tiny number of people I’m talking about. Yet the emotional surrender — fully voluntary — it took for me to share my extra kidney left me as raw as a person in love, as vulnerable as a lover who can be rejected any minute. I’ve exposed myself and what I care for. I’ve got no armor around my heart.

I’m not saying any of this is rational. Love and missions are rarely rational.

It’s hard to write this. I’m crying as I write (my belly has healed enough to do that, hallelujah). I wish Gloria’s and my story could be all upside for you, all love and light and encouragement. And of course it’s not like that, because we’ve got a human story going on here, not a fairy tale.

Not everybody will care with me and Gloria about our kidney transplants, and anti-racism, and the joyful, life-giving transformations these can create.

And that’s OK. Plenty of people do care with us about these things. I deeply appreciate that.

8 thoughts on “The Hardest Part, Surprisingly”

  1. Alison.
    I am glad you are doing better. You are one individual in a million. What you have done exceeds my imagination in generosity and altruism.

  2. Nicely written. Thank you for letting me be a part of your (and Gloria’s) journey. I’m glad you have found supportive people, and hopefully they more than balance the scales of others who are indifferent or even negative!

  3. Dear Alison, I must say that I was impressed when we walked last weekend for two hours. I know that you were a little sore, but seem to be very good about taking care of yourself with PT, stretching and rest. Yes it feels yummy to be supported and sorta crummy when we’re not. I learned this when I had a major loss last year. Some people knew just what to say and sometimes just a hug was enough. But others were not remotely tuned in. I was in a sensitized state of grief, and so everything was amplified, as it may be for you in some way. This may be an opportunity to take stock and redefine the relationships of those who are not able to meet us. Oh and I enjoyed Colleen’s writing. Very skilled like you.

  4. I just signed up for Anti-Racism Daily! Thank you, Alison, for the recommendation! I look forward to more email, not really, well sorta… But in truth, I try to read the email messages that matter, and this does. And heartfelt thanks to you for sharing so freely your gifts — most importantly here, your gift of a super healthy body and your beautiful gift of writing/sharing.

  5. I’m glad to hear that you continue to heal, and I know that you are well loved and supported by your family and friends. The emotional reaction after all the physical stress has been my experience. The body takes care of its house first, and then lets the mind/spirit go through its own healing process. Your gift matters to so many, directly to Gloria and as an example and inspiration to others who are following your beautiful story. Love you!

  6. Thank you Alison — for all you have done and are doing. Our team at NKF has been following your journey throughout and I should have let you know sooner how much it has mattered. It is a light in this dark time, a living act of hope that I certainly need and have leaned on these past months.

    1. Patty, I’m delighted to hear from you and the National Kidney Foundation. You’ve been doing lifegiving work for a long time, and I’m fortunate that I’ve recently become a part of it!

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