Binney Street, 5:13am

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Binney Street, 5:13am. Four benches. Dana-Farber Cancer Center on my right, Brigham and Women’s to my left, where Mani is in Room 14A-14. On one of the benches, a man just woke up. He didn’t notice me sitting here at first, and I saw him unzip his fly and turn towards the bushes. He must’ve sensed my presence, though, as he turned around, zipped back up, and left. I see him walking now, a grey backpack disappearing towards the corner of Francis Street.

A few minutes ago, I met a woman in Au Bon Pain. Both of us were standing in front of the drip coffee options, as if being faced with a difficult test question. “Get any sleep?” I asked. “No sleep, but good news,” she answered. We agreed that that’s a welcomed trade-off. Her 78-year-old mother has stage 4 pancreatic cancer. That’s not the good news. The good news was that she can go home today instead of five or six days from now. Turns out Linda, the daughter, herself suffered from Lyme for years. She developed neuropathy as a result, which I learned after sharing with her why I am here with my wife.

In the ER last night, where we sat for four hours in the waiting room and then another three in a room before Mani was admitted, one of the nurses, a woman seven months pregnant with kind eyes, walked in, took one look at us, and said, “Can I just ask, what is your relationship?” I knew right away what she was thinking, having now heard this so many times. “Not sisters…” I said, smiling at her. “We’re married.” Then I couldn’t resist. “Legally!” She threw up her hands and told us where she was when she heard the news on the radio Friday morning.

So we are here again. Mani’s pain has been incapacitating, and as a result, she can barely sleep or walk or eat. Eating and getting nourished, all the doctors keep agreeing, is what will reverse the neuropathy that makes her feet feel like they are on fire in a way I truly can’t imagine but know what it’s like to watch and witness. It’s a chicken-and-egg situation, one that some days inpatient probably won’t solve but at the very least she needs pain relief and nutrients beyond the Ensure and rice cereal she’s been able to stomach at home.

Watching her lose weight and writhe in pain has been unbearable; or rather what by yesterday was beginning to feel irresponsible and scary and frustrating as I fielded calls to various providers and we waited one day, two, three for this or that next appointment or conversation. So we agreed, that driving back to Boston was the only and best option right now.

In a few minutes, I’ll go back up to her. Around 8:00 or 9:00, we will meet another group of doctors, probably GI and neurology and a pain management team. I don’t know if we’ll stay for two nights or several, only that we are here again, trying to do the next right thing to get her help.

Last night, after she’d been in touch with her girls in Phoenix, I talked to mine on the phone. They are still up at their Grandma’s house in Vermont, and I plan to go up there Wednesday for a night, to see Aviva’s play and to bring Pearlie back to Amherst before she heads to Maine for a week with her dad and my sister’s family. My other sister will come to be here with Mani for the night, if she hasn’t been discharged yet.

We will keep taking things one day at a time. I will keep reaching for faith that I and we are doing everything possible to help her get well, and reminding myself that esperando is both waiting and hoping–and that there’s nothing passive about love.

19 thoughts on “Binney Street, 5:13am

  1. jenhop says:

    Jena, I’m sending positive intentions for Mani’s healing, and hugs to you. My husband had RMSF last year and thank goodness no neuropathy followed. I don’t know how Mani can bear it. Wishing and praying for both of you.

    Liked by 1 person

  2. Pamela says:

    There is nothing passive about YOU dear girl. Maybe because you are all love. I am so sad to hear about Mani’s pain, which I know is also your pain. I am sending wishes for comfort and nourishment for you both. Make sure you eat too and take good care of yourself. I wish I could fly to Massachusettes and cook and clean and do laundry so you could sleep and relax. Xoxo – please share.

    Liked by 1 person

  3. dhenryb says:

    I am overcome with how much you are going through…..yes, have faith…..what can you do but “let go and let god”…..whatever that means…..and hold on to love…..so many lonely people out there have no one to even hurt for…..but I’m not saying that to make you feel better—-just that what you are doing is the best, kindest, most loving, the kind sweet face of Buddha in the now reaching out to whatever you can find….I love you both very much…..

    Liked by 1 person

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