trip to Boston, ten years gone

10 yrs ago at this writing Margaret and Maxwell (RIP) and myself were headed cross-country in a rented mini-van so we could live in a hotel for 2.5 months while I rec'd proton beam radiation on what remained in my head after two brain surgeries.

September 2005 from Brian Padian on Vimeo.

highlights/lowlights from our Polaroid/thoughts journal are here

return to boston

"...no matter where we are we're always touching by underground wires..."

The Past is a Grotesque Animal, Of Montreal

last time I was in Boston was Nov 2005, in a van driving alongside the Charles, heading out of town after many weeks living in the Kendall Sq Residence Inn, homebase for me and M and Maxwell (RIP xo) while I received 25 rounds of proton beam radiation and 10 rounds of photon radiation one stop up the T red line at MGH. That period exists in our minds in the present tense, somehow part of and divorced from our reality, a lumbering, cumbersome phantom limb. It wasn't until this visit, in 2013, for M to attend AWP, with me safely tucked away from the fear and black of 2005 that I was able to see in clear relief how the darkness suffused the landscape then, how my eyes saw everything through the gauzy haze of possibly being dead soon. 

A couple weeks before the trip I got in touch with Dr. L, who managed my protons, to let him know we'd be in town and could we come by and say hello. He was amenable, telling us to meet him at the Proton Center and so on a snowy 3/5 we took the T green line from the Prudential Center, transferred at Park to the red line and on to MGH. In 2005 the station was undergoing retrofitting and/or redesign and my memory of it is caution tape, orange cones, signage warning of peril and danger. Today it is shiny steel and glass, almost obscuring prior transitional phase by merely existing. 

Walking into the Yawkey Center I felt strange waves of sadness and gratitude, inextricably linked, neither possible without the other. We paused for a moment so M could eat her lunch before heading to the proton center. I looked around at faces of patients and caregivers, the shimmer of uncertainty in some eyes was a familiar bell tolling inside me, near and far all at once. 

Later, after our visit w/ Dr. L and his apprentice was done, after their questions about my health, my life, my good fortune had been asked and answered, after we rode the elevator up from the treatment floor back to the Yawkey Center, after we'd ridden back on two different T lines and emerged in the Prudential Center about to part ways so M could attend a panel we realized we didn't have the baby bag (which for the uninitiated contains diapers, some toys, some utensils and other errata vital to the parent). We realized we must have left it at the cafe at MGH. M went to her panel and N and I got back on the T, going back the way we just came, snow flurries increasing, part of me certain the bag was gone forever and another part equally certain it would be sitting at the cafe, exactly where we left it, safe from harm but exposed and vulnerable, something vital we'd forgotten, misplaced in our daily hustle. 

N and I walked down from the T stop, across the street, into the snow. I was having deja vu, having walked into this building both 2 hours before and 8 years before. Moments later I sent M the following: 

autumn, and other bits

saw this item about a lawsuit online today. brought me back 2 yrs in the amount of time it took the photons to reach my eye. A photograph w/ time-travel facility. for this you see is the MIT dorm in Cambridge right across the street from the park we took Maxwell every night 2 years ago. When we weren't here, that is, for my radiation treatment.

seeing that structure has several levels of strange but the simplest one to convey would be this:

we've been living in the past the last couple months. It's mainly because of our book, the co-written his/her, husband/wife, patient/caregiver memoir, the writing of which has forced us into a sort of semi-constant state of reliving unpleasant moments in all their stark unpleasant detail. What i had tied up and shelved in my mind as a sterile antiseptic box named Surgery One has now been pulled down and unwrapped, freeing a swirl of specific moments and general memory, some better left forgotten: the jerky ride of medical turmoil, the emotional highs and lows based on numbers on charts and interpretations of graphs, the malevolent stink of a friend's misguided email, the acrid bite of black fear, the hazy fog of post-surgery, of late-night MRIs, of a black and uncertain future. Real good fun.

Obviously, it's been really f**king difficult to write about. Both of us have wondered about the sensibility of doing it now, about the value of doing it at all, trying to think if the whole project has any value at all except to us and if so, why the hell are spending free time, weeknights and weekends, reliving these horrible things in horrible detail? Merely to exorcise? What is it we hope to gain from this experience?

One choice tidbit has been pulling the word 'chordoma' up from the ocean floor, as for 2 months we thought i had chordoma instead of chondrosarcoma. There was some hope heading in to Surgery One that i had a pituitary tumor, which would have led to a different world. not to be. the distinction between chordoma and chondrosarcoma was not known to us then. i suppose it didn't really matter. any way, found this today which addresses some of the difference.

so, we are trying to balance all this unpleasant-ness w/ fun, whatever that might mean and whereever we can get it. last night went to the laurelhurst to meet D & L
and see brazil, which is still real great. if you've seen it you'll recognize this:

rambling and sputtering

alone at home this wk as marg is in boston visiting LC and checking out our old haunts of 2 yrs ago. if you're a regular reader (read: hi mom) then you know about my bewilderment of late with these strange translucent membranes of time that slip and move around me only to dissipate as i struggle to get hold of them. things sometimes move into a surreal dream state where reality is fleeting and ephemeral, existing maybe in parallel worlds. identical motifs and objects keep returning to me seemingly of their own volition. on more than one occasion i have wondered if i am dead or in a coma and my brain is re-presenting swirled elements of the past 3 years. Shit, that makes me sound crazy but i can't articulate it any better than that. At least, i can't right now. Here's a smattering of photos
from 2 years ago in and around boston

stayed home sick on monday and tuesday so i was able to get a lot of mindless televison watching out of the way. saw season 5 of the shield and a couple movies. last night, feeling a little better, i ventured out of the house and went to see a second-run movie. i knew it would be bad since it features giant talking robots and i was ready to accept that b/c the price of admission was 3 bucks but man o' man it was absymal. should have known better.

arrival, the

2 yrs ago yesterday we awoke at a Red Roof Inn in Syracuse, NY. It was crisp and autumnal and the complementary coffee from the lobby at checkout was brown swill. We got into the van with Maxwell and drove through town to Aaron's house. He and I had never met in person before but we had shared some extended online screenwriting commiserations and it seemed silly to not stop in and say hello since how often am i in Syracuse? Afterwards, we drove through town, across the campus just to see it. We bought bagels and coffees and got onto the highway, headed toward Boston. It was our shortest actual day in terms of driving, but longest in terms of what lay before us. Getting in to Cambridge, finding the Residence Inn, checking in, unloading the van, seeing my parents, going to dinner at an atrocious restaurant nearby, waking at 6am [after an already restless night] due to the monstrous chirp of the fire alarm in our room requesting to please be changed and my well-intentioned but poorly made decision to attempt to pull said fire alarm off the wall triggering an immediate call from the front desk and subsequent visit from their onsite technician – it was the longest patch of 24 hrs imaginable.

on 9/26 we met w/ Dr. L, i had an MRI (my 4th that yr), had a CT scan, got my face fitted for the mask that would hold me in place for 25 proton beam radiation treatments (plus 10 photon treatments).

on 9/29 I had treatment #1

demarcations and points of entry (w/ video)

so, we are coming up on some key pts in september. 9/16 will mark me and mm's 7 yr anniversary and 9/19 will mark the 2 yr anniv of us leaving for a wk long van drive across the u.s. ultimately arriving in boston, wherein we lived in a residence inn for 2 months so i could get proton beam radiation for the remaining parts of my brain tumor.

boston was a strange period, both in terms of the brain tumor year and just in general in our lives. it was both quick and endless, dark and light, high and low - it represented me getting reprieve from the tumor but it was surreal and odd, at the intense pitch that being in hospitals and around the infirm and the direly infirm can trigger. it was very much like living underwater. the two of us in separate air bubbles that would bump into one another on occasion. also surreal: to be back in the state where i was born, in the city where mm lived for much of her childhood, where some of my cousins and mm's friends still live. working on the book has churned some stuff up so yesterday i started to look at some video bits that i'd shot out there, nearly two yrs ago. spent last night and this morning cutting together what you see below.

a primer: every day mm and maxwell and i left the residence inn (kendall square) walked down to the charles for an hour long walk around the esplanade. my parents were present for our last wknd (also our first), helping us over the hump emotionally and financially. and then there was the long drive back across the country, further from boston, returning to portland, back to an uncertain world w/ tenuous margins...