A new one

A new season began. It had any number of false starts, and there were many points where it seemed prudent to put the winter boots away, only for them to be needed again. Spring is now officially confirmed. First I browsed the flowers at the botanical garden, and then, finally, got around to planting my own.

Thoughts of my father come and go. When they come, they are sometimes sharp and painful, other times the gentler nudges of saudade.

His presence keeps making itself felt. For a translation job I finished this week, I worked on an essay about Ingmar Bergman, Pa’s favorite director. As it happened, there was an entire paragraph in the text explaining how it was that Bergman came to have such a great following among cinephiles in South America, and particularly Argentina, where my parents come from. (He and my mother attended retrospectives of Bergman films in Buenos Aires, and after the screening psychologists would help the audience parse the dense symbolism they’d seen.) My jaw dropped as I read this, and I wanted to pick up the phone right away to tell my father all about it.

We are going through different cycles of saudade and sadness as we prepare to say goodbye to our beloved Brooklyn (and New York) this summer.

Seventy boxes, just a start

J and I have decided to move our family to the Washington DC area, where I grew up. This is not an easy decision. I have lived in New York for twenty years, and J has never lived outside the state of New York in his life. But the move offers everyone exciting opportunities, so we are making it.

The process of moving is destabilizing and stressful, but provides brief moments of happy discovery. I celebrated my twentieth “Appleversary” shortly after my father died in February — two decades living in New York City. So it was fitting to find the other night, in a folder labeled “Floor Plans,” this sketch of my very first New York apartment. My employer at the time, Columbia, offered me subsidized housing in one of the many apartment buildings they own in the campus area. I had to choose between two apartments within a short time span, and I was in New Orleans at a conference when my turn came up. My father took the train up to New York for the day, visited both apartments, and produced this floorplan of the apartment he thought I should take.

Of course, he included the measurements of the other apartment, in different color ink, so I wouldn’t feel shortchanged at not having been able to see it.

Pa chose well — it was a lovely apartment and I spent five very happy years there before moving in with J. Every evening I had a front row seat to sunset over the Hudson River. In 2000, I watched from my window as a historic parade of tall ships sailed up and back from the George Washington Bridge. I did not feel the oppressive sense of living in a cramped space that is the stereotype of most New York City apartments, especially the first one that you live in when you arrive as a young person. I bypassed that struggle. I had ten foot long windows in both rooms. I could see the river, and across it, the mainland of the U.S. (lest I forget where I’d come from). Now, as my time in New York winds down to a matter of weeks or months, the past twenty years flood forth, in memories and in boxes.

In preparation for selling our apartment, we had painters in for a week. After a few days of attempting to live here while the painting took place, we decamped — first to J’s parents’ house, and then to friends. I was between assignments, so I was able to devote my full attention to a memoir called Educated, by Tara Westover. She tells a gripping story of her fundamentalist family’s life on an Idaho mountaintop. (I won’t spoil it for you — you simply must read it.)

Her father is a central figure, and as I sat on my friend’s couch on a sunny afternoon, waiting for the dust to literally settle in my home, I came across this passage which took my breath away:

Alongside all of the love that I have expressed in my memories of my father is the fact that he was a complicated person — the most interesting people are. Our relationship wasn’t consistently harmonious — because good ones often aren’t.

For me, the idea of moving back to my hometown was, at first, impossible to conceive. It even angered me. New York was my dream and my goal, as early as age ten. Dreams change, of course, especially when children are involved. When we began discussing our move with the kids, Young J (age 11) said, “You know, I’ve never really seen myself as a city person.” It was a stunning expression of self-awareness on his part, but not at all a surprise. He’s long dreamed of living in a house “with stairs inside it,” something which would never be possible for us here in Brooklyn. He adores the country, by which he means anywhere with greenery that you can go a day or longer without hearing a siren. Young A (8) is less enthusiastic, because he’ll miss beloved friends and teachers, as well as the NYC subway, which he deems superior to that of Washington’s, because it is older and dirtier (a child after my own heart).

Moving back home seems unthinkable without Pa there to obsess over every single detail of our home purchase, the traffic volume in our new neighborhood, or any number of minutiae I can’t even think of which he would have sent numerous emails or made any number of calls to us to discuss. Moving to a house without Pa to scrutinize its floor plan seems impossibly sad.

A few weeks ago when we were visiting my mom, I saw my grandfather’s old writing desk in the corner of her cluttered dining room, finally unburdened of the boxes that had been sitting on top of it for years. I realized that I wanted that desk for my own, and I could never have it in our current apartment. That was a crucial turning point for me. It pitted NYC versus a longed-for connection to my past — and unlike prior rounds of the same battle, I wasn’t all that sure that the city should win this time.

I also found myself, late one night, hard at work on a floor plan of Mom’s apartment, trying to figure out what size of couch might work best in her living room. I used my father’s graph paper and his father’s ruler.

Here but not here

It is not that he won’t be there, I’ve come to realize. It’s that he will be there to guide my hand when I need his help. And maybe now it is even easier to let him.

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Making Me Understand: “Souffles,” by Birago Diop

(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or artist means to me right now.)

When I was in junior high, I hated school. I hated being in my skin. I reached my current height of six feet right around eighth grade. It was not a source of pride.

But beginning in seventh grade, I had a Happy Place, and that place was French class. I loved my textbook and its little cartoons and dialogues and photos of Paris and the countryside. The language came to me almost effortlessly. And I loved the poems in the textbook, which we could memorize and declaim in class for extra credit.

My textbook in eighth or ninth grade, Scènes et Séjours, included a poem somewhere in the middle of the book that spoke to me with its incantatory vibe and authoritative tone. I was just starting to discover poetry, and this one really intrigued me.

There was no biographical note about the author. There was just the poem, and my assumption that the author came from Francophone Africa. I loved the poem so much, I not only memorized it — I also, at the end of the school year, bought my copy of the textbook.  I have toted it around with me ever since, even to college, where as a French and Italian major, I mostly had no actual textbooks, just small, obscenely expensive imported paperbacks of novels to read, or sheaves of photocopied poetry or plays or literary criticism hand-selected by my professors.

I took the textbook out the other day when the refrain of the poem refused to leave my head and I couldn’t seem to find a standard version of the poem online:

An English version (one of many that can be found online) is here.

Birago Diop was a Senegalese writer, veterinarian, and diplomat, whose childhood was steeped in folktales told by griots. As a writer, he became affiliated with the Négritude movement.

One analysis of this poem emphasizes its source in Animism, the belief that there are souls not only in living things, but in all things — and that there is no separation between the spiritual and material worlds.

No surprise, then, that this poem has resurfaced precisely now, bobbing like a cork in my mind as I begin to make my way out of the initial shock of my father’s death and into the unfamiliar process of situating this loss within everyday life.

Since losing my father, many things have been revealed to me about the way the departed make their presence known in the world. Not just the Velcro I spoke of in my previous post, and not just the glimpses of the many other things my father loved popping up where I least expect them. 

I find I have new ways to interact with people I may have known for a long time, who dealt with the loss of a parent before I did, and who now welcome me to the (admittedly sad) club. We can talk about things, find points of intersection, and muse about how well our fathers might have gotten along.

There have also been unexpected communications from beyond, mediated by people my father might not even have bothered to speak to while he was alive. This week, I found myself unexpectedly in receipt of such a message from my father, transcribed by someone who was a stranger to him, someone I have known casually for a long time, someone for whom communication with the dead is a normal occurrence.

(I would have laughed if he’d ever called me Princess)

I wanted to believe it was a put-on, and “Princess” nearly threw me off. Who can wrap their head around their dead father reaching out in this way, and in such unfamiliar handwriting?

What the person who mediated this communication did not know was that this particular week,as I headed in for my next brain MRI, I’d really need that sort of reassurance, whether or not it was actually from my dad. My anxiety this time was tempered by grief, but it was still there. My continued health is not a foregone conclusion. But I have outlived my father, which at several points might have been a less certain thing. I wouldn’t say this gives me a sense of comfort, really. It is just one less thing I have to dwell on.

Yesterday morning, I went for my scan. Today, I saw Nurse Practitioner Rajni, who told me right away that my MRI looked just fine. I told her my father was dead, which was news to her, because the last she’d heard, I was headed down to see him (and asking what to do about taking my medication that needs refrigerating). I narrated his final days for her, and each time I do this for someone feels like a bandage being ripped off, a wound reopening.

Being back in a medical setting was not easy, neither yesterday at the MRI facility (where I was largely okay, except for a brief moment when the technician placed my IV and my vein collapsed and she had to start over, and I thought of the many times in the hospital that my father was stuck), nor today, when Nelson, my favorite technician at Dr P’s office, consoled me as I cried while he took my vitals. He too was on the verge of tears, telling me about losing his father to cancer four years ago.

Last night before going to sleep, I realized this would be the first time I’d get scan results and not be able to call my dad to tell him. (I dissolved into tears, of course.) This morning as I was rushing to my appointment, I saw my father’s plaid shirt draped over a chair and knew I’d need to wear it.

My father’s shirt was there with me, getting the news. In the past three weeks, I have tuned in to things (choses), and also to beings (êtres). And I think I might have learned the lesson that this poem implanted in my head so long ago: Les morts ne sont pas morts.

We said goodbye

A now-unfillable cup

My father passed away just after midnight on February 1. He had turned 82 years old on January 30. We buried him today. Friends who have been through the loss of a parent told me to be alert to signs or messages from my departed dad. They were there, in the heron I spied by a pond as our procession drove by; in the traffic on the highway; and even in the completely random appearance at the cemetery of a piece of Velcro that stubbornly stuck to my glove (I had always associated my dad with Velcro because he is the one who first showed it to me, and he used it for many things).

I’ll have a lot more to say about my father in coming weeks. For now, I’ll just say, I miss you, Pa.

An unopened package in search of a project

Vigil

Worry doll

My father has been in the hospital for two weeks now. He suffered a sudden brain hemorrhage while out running errands two Sundays ago. He’s at a very good hospital and getting the best of care, but if anything the last two weeks have shown us how much better it is to not to have to be in a hospital at all. He’s suffered from a couple of hospital-acquired conditions which the doctors are still trying to resolve. His brain seems to be stabilizing, though, which provides some slight encouragement. Also, from the first day there, he has been perpetually concerned with making sure the bills are paid on time.

I feel grateful not to be the one who is sick, but that is most of what I feel grateful for at the moment. To say that my father is not fond of hospitals is a gross understatement. I hate that he is stuck in one for the time being. I am grateful my mom can be by his bedside most of the time, and my brothers can as well.

Living a couple hundred miles away is hard. I was there for a couple of days at the beginning, but ten days, and a million reversals of fortune, have now passed. I will take the bus there tomorrow, and spend the night in the reclining chair by his bedside, so my mom can have a break. I wish I could do more. It is so difficult, feeling pulled between two poles, between my daughter & mother roles.  I know I’m not the first to go through this, and I won’t be the last. I’m just the next in line.

When I was there last, I was casting about for something that my dad might like to fidget with, because his hands have been restless. I found this wooden figurine on his desk, and took it to the hospital with me. He wasn’t quite able to grasp it easily at that point, so I brought it back home with me.  It was been my worry doll, my reminder, my focal point. Sometimes the kids come and put it in a funny pose.

I’ll stay by my dad’s bedside tomorrow, and come Tuesday morning, I’ll get to be the first to greet him on his birthday. I can’t stay long, but I will be there, to give him a kiss, to show the video the kids made for him… and to wish him the healthy, long life that seems so far from his grasp right now.

Farewell, my friend

2018-01-13_11-Kent Island and Eastern Neck Island (and Chesapeake Bay Bridge), by Ken Lund on Flickr, licensed under Creative Commons
Kent Island and Eastern Neck Island (and Chesapeake Bay Bridge), by Ken Lund on Flickr, licensed under Creative Commons

Getting this message through the ether was the first moment I realized all of my typing here might do something other than help me:

Deborah, your blog is like a parallel life to mine at the moment – I feel stronger knowing that someone else is experiencing exactly the same side effects and riding the exact same emotional roller coaster as I am. Wishing you continued strength

This was my introduction to someone who would become my melanoma pen pal. We were contending with the same disease, and receiving the same treatment. But the similarities ended there. She had been diagnosed with melanoma at the age of fifteen — a mole on her temple. She had it removed surgically, and there was nothing else… for twenty years. It returned with a vengeance, and she had surgery to remove a parotid gland and lymph nodes. Tumors kept appearing. She had been treated with immunotherapy, as I had been. And, at the time she wrote to me, she had begun the same targeted therapy combination that I take — and was the very first person in her country to be taking them.

At the time she got in touch with me, I had been through a lot of medical and personal drama — being declared NED, and then, 24 hours later, finding out my brain was riddled with tumors. Getting a job for the first time in years, and having to leave it to tend to my suddenly declining health. I had found a therapist to talk to every couple of weeks, but didn’t have any support group I could participate in. This has been an issue I have contended with ever since my melanoma metastasized and I underwent treatments that, while absolutely mainstream, fell outside societally accepted norms of cancer treatment, simply because the general public hadn’t heard much about them yet. I was referred to places such as Gilda’s Club, but every time I picked up the phone to call them, I imagined myself walking into a support group meeting, looking the picture of health with all of my hair and no nausea… and I couldn’t do it. It seemed analogous to walking into a Weight Watchers meeting when you desperately need to lose twenty pounds, and having everyone else glare at you because they have further to go. I have since found a melanoma community on Facebook that provides the steady stream of support and treatment data points (and more than occasional heartbreak), but I didn’t know about it then.

I was so relieved to have a pen pal who echoed the very same things I was feeling:

I find that people say that I am very brave — it’s not being brave, it’s just that you really don’t have any other choice but to keep going … I am no different from anyone else, there are days that I just freeze with sheer panic and terror, other days I am angry at the stupid things people say to me, or if I’m honest, the fact that I just want to be like other people my age… with no worries.

We struck up a friendship, and we’d write each other every few months. I’d worry when I didn’t hear from her, and she was not on social media so I couldn’t passively check in. We shared vacation photos and news of our families. She was a doting aunt to two nieces. She sent in a donation for our bike ride when we were raising funds for cancer immunotherapy research.

My friend had a hard time with the side effects of our treatment, though, including one of the most common ones — fevers that would land her in the hospital every so often, and taking medication breaks until things stabilized. I fervently hope someday there will be a scientific reason for how and why these side effects happen (or, in my case, do not), and better ways to control them when they do happen.

Things took a turn for the worse for my friend in May 2017, and she was referred to the palliative team. After this point, there were many ups and downs for her, and a number of hospitalizations. I received an email from her last August, in which she reported good scan results, and was excited to be going home from the hospital.

I didn’t hear from her again. I felt strongly that something was very wrong, and emailed her on November 16, a brief note to send my love and tell her I wished her well. From the country stats I get through WordPress, I could tell she hadn’t been checking in on my blog. I periodically searched for notices online, and last night I found one: She died on November 17.

I have been at this cancer thing for a while now — anniversary hoarder that I am, I noticed a few weeks ago that April will mark five years since my initial diagnosis. You would think I’d be used to losing people, but it doesn’t work that way. Every loss is a knife. Every loss is a chasm opening into the center of the earth. On the Facebook group, which has over two thousand members, not a week goes by without the death of a member or a spouse or a child.

In a time of miracle treatments, and success stories (so far) like mine, in a time of falling cancer mortality, and even in a time where an article can be published that uses the “c” word in the headline, it is very tempting to focus on the positive, especially if you are the one with cancer, or your loved one is. And then yet another wrenching loss comes along to remind you that this is not a good business for anyone to be involved in.

I miss you, my friend. Our beastly disease struck you so early, let you live two decades with the illusion that you might outrun it, and then ended your life in such a merciless way. I hope where you are it is sunny and a lot like Italy… a place that you and I both love. Xoxo

Oops.

Considering I’ve been at the blogging thing for three years, I’m surprised this never happened before! I uploaded an unfinished blog post today. I’ll get back to actually writing it soon, but email subscribers have already seen the contents. Sorry for the spoiler. I’ll take this opportunity to wish you a happy new year! All is well here (well, considering), and I hope it is the same with you.

46 and still kicking

Facebook Overdose, by mkhmarketing on Flickr, licensed under Creative Commons

I failed to post here on my birthday (other than editing my age on the About page — that was actually the very first thing I did). I’m only a bit surprised about it, to be honest. I’m sure that you, my most beloved and faithful 3.5 readers, have noticed a dropoff in posts here. I guess that stable health (well, comparatively stable, pneumonia notwithstanding) makes me less likely to keep returning here, to the scene of my illness. Much in the same way that my habitual and lifelong journaling habit turned out to be something I was doing while waiting for my actual adult life to start, keeping this blog was a lifeline at my sickest and most anxious and mortally afraid moments — and I hope that in the event things become gloomy again, I’ll feel the same — I’ve also felt that posting here sometimes feels like an impediment to other progress. I know that other types of social media have been that type of impediment to me. I’m trying to find a way to renegotiate my Facebook involvement, but since it has formed part of my daily life for twelve years now, that is easier said than done.

Last year I launched a Seven Year Plan on my birthday, and with the exception of one month this year, I did manage to check in with myself on a regular basis. I was open to changing the nature of the plan throughout, and was amused to find, as the year went on, that I got a lot of satisfaction from striking things on the list I’d made, and not because I had accomplished them — not by a long shot. Instead, it turned out that when you make a bulleted list of things you want to achieve, that list may be coming from somewhere external to yourself. And if you are setting goals for yourself that would please others, that will soon make your self-esteem plummet — particularly if you know as many superachievers as I do. Striking through those goals was liberating.

I also noticed, when it came time to read over my monthly check-ins, that I was bored to tears, and I had also made so many excuses to myself. SAD! 

I know I accomplished things this year, but this process wasn’t helping me to spotlight them. So, while waiting for my eye checkup with Dr. D yesterday, I wrote up a new list of goals for Year Two of the plan. They are 100% more vague, but I feel 100% more excited about accomplishing in those areas. And my monthly check-ins won’t be written anymore. I’m going to make a mini-portfolio each month, with anything from a diagram to a drawing to a photo of a paycheck or of work I’m doing on my laptop. So much of my plan centers around doing creative work that it seems a shame to miss the opportunity to do it creatively. When the monthly check-in reminder pops up on the 13th of each month, I want to be more excited about it.

Dr. D, by the way, said my eyes are looking fine. But he keeps nudging me to consider progressive lenses. I realize I’m at the age where they would be beneficial, but I just can’t give in yet, and I told him so. My extreme stubbornness has helped me quite a bit thus far, and my slower adjustment from long distance to reading distance is not a threat to my health or safety (or that of others) yet, so I will wait for the progressives, thank you very much. Dr. D then insisted on showing me that perching my glasses on the end of my nose might improve my vision for reading. (Nice try, Dr. D.)

I hope you are all keeping warm and doing the things you love, in between doing the things you have to in order to get by (which in my world includes taking medication and calling my elected officials).