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back in the land of relentless mortality

home after three weeks of ecstatic travel, straight back into the maw of bleakness and cold reality. my neighborhood is buried in four feet of snow. it’s 7 degrees. I slept for 12 hours after the 30-hour airplane slog (tack on an extra 8 hours due to the snowpocolypse) and now…straight to the hospital to take care of anthony for 24 hours in the transplant-halfway-house next to the cancer infusion center.

when i landed last night, the line for a cab at logan airport was over an hour long.
the cab dispatch kept walking the line and shouting out neighborhoods, trying to pair people up to get everybody home faster. how nice, I thought. I was dead tired after the 30 hour trip, hungry, nauseous, lovely. the cab to my hood is only about fifteen minutes, and subway and bus travel with this amount of luggage wasn’t an option. I called lee. he couldn’t get me, the car was snowed in.

when the dispatch called down the line for my neighborhood (the south end) I raised my hand and gleefully trucked my luggage to the beginning of the line at which point I was confronted with a woman arguing with the cab dispatch that she had not volunteered to share her cab with ANYONE and that “he hadn’t even asked her.”

I looked at her. it was late. cold. the cabs were arriving only every few minutes.
I looked at the other 300 people in line behind her.
I was pissed. I hated her for a second, her and her Prada handbag. I knew better.

I came up with a more clever comeback in the shower last night, which went:
“but now I REALLY want to share a cab with you. because I am totally fascinated to find out what kind of person doesn’t share a cab for fifteen minutes with a stranger in a snowstorm”
but instead I found myself inspired by that scene with Steve Martin from “planes, trains and automobiles” where he haggles with an attorney over the price of a bribe for a taxi in a snowstorm in New York the day before thanksgiving.

I looked at her and said:

“would you share your cab with me for $500?”

I’m not sure what I expected her to say, she just looked at me with horror, and at least I amused the rest of the line behind her, who all tittered in appreciation. I went back into the line. I waited.

when I got to the front, I offered to share my cab.

ah, boston: puritan land, home of harsh beauty and inescapable reminders of our own mortality and insignificance and stained, unholy nature in the eyes of The Lord.
…….

an Anthony update: he has now been an inpatient for about 50 days, and while the good news is that the bone marrow transplant “took”, the reality is that the recovery process is relentless. he was supposed to be in the sterile halfway house (next to the hospital, as he needs to be near his treatments and the drives are too dangerous) for only about a week or two; it’s stretched into three, four weeks. his wife Laura and a small circle of friends have been taking turns doing 24-hour shifts, since he’s untended by nurses but is not allowed to be alone, and needs a caretaker. he can’t eat most normal foods, only things that have been frozen or canned or cooked through. he’s weak and stays in bed, and is going stir crazy, and doesn’t have energy to do very much of anything, including text and email.

I booked the trip to Australia back when he was supposed to get the transplant in September or October – we figured he’d be long out of the hospital and home, recovering, by now. not so.

I felt guilty leaving. I was mostly useless in the fall, even though I carved out the time to be around; he was mostly wanting to stay home, not hang out, conserve his energy for the upcoming transplant marathon. once he went into the halfway-house, I was needed. and that’s when I left. it felt incredible shitty, like I was a fair-weather caretaker who could help but only at my convenience. I’ve had enough supportive friends tell me to shut the fuck up, but you know how it is. it eats me.

adding the trip to South Africa dragged things out another six days, seven if you count the extra snow-bound travel day, but it was – in a roundabout way – unavoidable.

i texted him every day while I was away. sometimes he had the energy to answer. some days not. some stretches I was lucky to just get a series of emoticons after a few days’ silence. cell phones, texting, emails…it’s totally changed the way people are in hospitals. twenty years ago you lolled there staring at daytime television. now, if you choose, you can stay connected with the world through the little prison bars of your phone screen.

I’ve been following Zoe Keating‘s blog. jeff, her husband, is dealing with his own relentless cancer battle and she’s hanging on by a thread. a strong thread. I look up to her. I watch my friends, I take comfort in the fact that we are all weirdly, somehow, connected. I used to rely on anthony to be the strong one in my life…the one I could turn to, cry on, seek guidance, look for comfort, trust to be my honest compass. now I am finding myself looking in place where I knew I would eventually wind up if I got my shit together: inward. when there’s nobody around to prop you up, when the reserves run dry, when there is nobody around to comfort you in your particularly un-comfort-able state…that’s when you have to find yourself. you dig deep and find the hidden stash of self, the blessed lost quarter hidden in the cracks of the passenger seat, under the floor mats among the rotten leaves and sand and grime, which allow you to pay the meter and get on with things.

one more thing, and best put at the end of a long and rambling blog like this:

a lot of you have been asking if you can send things to anthony. yes, you can.

nothing can go straight to the hospital, because it needs to stay sterile-as-hell there, but his friends are picking up his PO box mail, and anything can go there.

do not send anything edible or alive or floral, and anything big and cumbersome is probably more of a pain in the ass. I suggest handwritten letters, small books, art you’ve made, poems, things like that. he’ll appreciate it. I haven’t wanted to share the address until now because I haven’t wanted to overwhelm him.

Anthony Martignetti
PO box 48
Lexington, MA 02420
USA

….

onwards.
godspeed us all.

I’ll post a blog about South Africa soon…if you have any great pictures send them along. it already seems like a dream from years ago.

xxx a

 

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  • esmertina

    *hugs* Amanda. I know how it eats you. Obsessive thoughts about what you wish you had done, and everyone telling you (at first patiently, and then with a bit of exasperation until you just stop saying what you feel), that you couldn’t have known, that it’s not your fault, that you did the best you could.

    It’s about the illusion of control. As painful as those thoughts are, it’s more comforting to believe that if you had only done things differently you could have changed the outcome, than it is to believe you are a helpless bystander to forces beyond your control and you have no power at all to help the people you love.

    I just lost my Mom to liver cancer and kidney failure. We convinced her to enroll in hospice while we were home over Christmas, hoping it would make her last few months more pleasurable. I had braced myself for a long, slow decline. I was making plans to work remotely so that I could help my Dad care for her. Instead, from the time she enrolled she was gone in less than a week. I am relieved and angry at the same time that it didn’t drag on for months. And I have stayed awake second guessing every decision, everything I’ve said, everything I’ve done. If only, if only, if only. The only thing that calms the noise is to accept that I was not in control of anything.

    I am so glad you get to spend more time with Anthony, and I send all my most positive thoughts and wishes to help him get through this fight. Be kind to yourself, Amanda. Accept your helplessness.

  • Dee van der Vyver

    My thoughts are with you Amanda, and with Anthony and his family and friends. All I can send is miles of good thought, and love for all for you. xxD

  • Krissy Whasserface

    Bone marrow transplants are tough on everyone involved. Love to you and yours because that’s about the only thing that’s remotely helpful in getting through this.

  • WaterStreet

    Despite Anthony not being able to go home, I’m glad he’s at least making some progress. With a bone marrow transplant, things can seem to go slowly, but underneath it all, those magical t-cells could be growing and doing crazy work.

    I understand your helplessness. My father has COPD and vasculitis – he is in a hospice facility because he can’t be alone, but his condition is the same. I live in another state and cannot do anything for him day-to-day. We talk and text; my other family members keep me informed. I’ve been to see him twice when we thought he was going to die, but then he “recovered.” If you want to call “recovered” being attached to an oxygen tank, and unable to visit the bathroom without feeling like you’ve run a marathon. He sends me messages asking, “Why can’t I die? I’m so tired.” and I feel so helpless.

    Anything you can do is something. I imagine Anthony loves you very much.

  • http://www.sarah-jaye.com/ Sarah SJ

    Impermanence, my dear. It’s one hell of a bitch, but it’s an ever lasting truth and I just hope you hang in there & that Anthony feels comfort and peace. I hope you find a way to make sense of it all and get through it… I believe in you. Love from SJ xxx

  • Freddie Rochez

    Glad you made it home ok. I wrote a little poem for you, and for the woman who wouldn’t share the taxi http://wp.me/p5fl0t-1B

    • Amalija Vitezovic

      After reading Freddie’s poem, this funny idea
      came to my mind: the possibility of retelling “The Story of Amanda and the
      Woman Who Wouldn’t Share the Taxi” in many different ways (in the line of Raymond
      Queneau’s “Exercises in Style”): as a drama sketch, as a TV/radio report
      concerning the situation on the airport, as an interview, as a cartoon, as a
      list of keywords (snowstorm, taxi, share…) with their dictionary definitions, as
      an SMS chat, as a tweet, as a Facebook post with a long comment thread, as an
      internet meme… :-)

      • Freddie Rochez

        Good idea. You could use all the replies here as the basis for a whole library of poems, stories, articles and so on. Imagine a whole collection of work, big enough to fill a book, or a shelf, or a whole room, based on one tiny moment of human experience…

        • Amalija Vitezovic

          Exactly – and the tinier the moment of experience, the more queneauesque it gets :)

  • http://www.concertmanic.com/ Sarah V.

    It’s such a dreadful helpless feeling when you want, as hard as you can want anything ever, to help someone who is sick, and there is really not a lot you can do. Doing everything you can never feels like it’s enough with something like this. It’s one of those irrational “being human” things, I guess. I hope things get better soon.

    The taxi story gave me flashbacks to the time I went to a cancelled wedding in Florida (“we can’t get our money back from hotels and airlines so we’re visiting you anyway!”) and we had a party with all the liquor they were supposed to serve at the wedding. It snowed back home in Boston and our flight was delayed for hours and hours. We eventually landed at Logan sometime after midnight, with severe turbulence during the last third of the flight, and there was a huge taxi line. I was completely nauseous from a combination of airsickness and tequila hangover. And we waited in that damn taxi line forEVER in the snow without a winter coat or hat or anything. I ended up getting home at 3AM and was sent home from work the next day because I looked so horrible they were sure I must be really ill. So, yes, FUCK the taxi line at Logan airport in the snow! (And fuck tequila too, while I’m at it.) But I would have shared a cab with you :-)

  • Brianna OC

    Amanda, long time fan, first time writing you…anything. I am listening to your audiobook after a friend posted on Facebook that any of her despairing artist friends needs a book to inspire them…to read “The Art of Asking”. I’ve had your voice in my ear while I am crying on the bus, on the way to one of my three jobs at 5am. You told me your secrets while I was clacking away doing data entry. Your stories about Anthony warm my heart; I have an Anthony character in my life as well- the mentor/parenty/friend/therapist combination.
    I am almost finished with the audiobook, but I got to the part about where you were told he only he 6 months to live. I started crying and I had to stop listening because I couldn’t bear to know…you are a deep feeler, as am I, and I knew your story would bring up my own sad memories. I lost my mother to brain cancer when I was 19, they told us she had a year and she had 6 months.
    I read this post and exhaled with relief. I am glad Anthony is holding up, and you are okay with the blizzard and everything.
    “The Art of Asking” has opened a new world of possibilities for me, I think, as an artist. I was a huge fan as a teen, but for some reason didn’t follow any of your internet presence.
    I’m here for you. As a fan, as a person, as one of those people who will surely offer you a couch or anything if you’re in Minneapolis.

    Thank you, Amanda.

    P.S. also a HUGE fan of Neil.

  • lentower

    The good in our lives is relentless too!

  • KaH

    it makes me so uneasy that you came to Australia/South Africa feeling so conflicted about being here. But this isn’t about me…

    I hope you can free your heart of the guilt.

    It is no consolation but you enriched the lives of many people coming here. I know that doesn’t mean a thing when it meant leaving someone as important as Anthony behind to do so…

    I wish you and Anthony strength and love. I know how grueling long hospital stays are, so I hope every day Anthony grows stronger.

    With all my love,

    Karina x

    p.s. Obviously I have no photos from South Africa, but if you’d planned on writing about Australia in a blog in the future, I’ve uploaded photos here of MONA: https://www.flickr.com/photos/insignifikunt/sets/72157650341345166/

    and here from the Sydney Art Of Asking show: https://www.flickr.com/photos/insignifikunt/sets/72157650341345166/

  • Jen Lindner-Green

    Whenever I deal with people like the taxi lady, I think about how lucky I am. If those few moments of dealing with her were that unpleasant, imagine what it’s like to actually be her full time?

    Every interaction must be a struggle, and she must feel like she has to constantly fight to keep the world from encroaching on the little patch of ground she considers hers. Like one of those little dogs who are always snapping and piddling. Aren’t you grateful you aren’t forever staking out your turf?

  • Luis

    Amanda,

    I met you at Woodstock a few weeks back for the book signing and I just finished the book a few hours ago – loved it! I’m a holistic nutritionist and herbalist. Let me know if there’s anything I can do to help Anthony – or you for that matter.

    Love,

    Luis

    • Luis

      I forgot to give you my contact: ThePineconeApothecary.com.

      <3