In 2009 Donna was diagnosed with stage IV cancer and given six months to live. Since then I have been playing hide and seek with life’s meaning and purpose, out of control self-loathing, and the ideation specter. Just writing this evokes a paralysis because I have no answers, no understanding, no sense of finding meaning and purpose for me let alone facing it and writing about it.
I’ve worked since I was 16. While in high school and college it was part time. After graduating college full time. My work was me. I was my work. Simple as that. Of course I fell in love, got married, went on vacations, and did stuff other than work. But my self attributed feeling of success was, as is the case with most boomers, tied to work and income. Which reminds me of a quote from the film “War of the Roses”. Danny DeVito says “My father used to say there are four things that tell the world who a man is: his house, his car, his wife and his shoes.” Those four things are surrogate markers for meaning and purpose. (i.e. career/money).
In 2009 when Donna was diagnosed I moth balled my business which meant I gave up my lease, let employees go, sold off/gave away all my equipment/computers/office supplies, and stored the rest. It took weeks and weeks. During that time I found a space to rent a desk and began to look for ‘consulting’ work. A friend working at a pharma company had a part time slot which I took. It was not my own office and not my employees but it gave me time and flexibility to take Donna to all her appointments, chemo, scans, and care for her.
When I mothballed my business I replaced the meaning and purpose of work with caregiving. I’m a caregiver by nature and being that for Donna was a joy riveted to fear. The meaning and purpose pulled from caregiving is largely invisible because it is masked by grief scented love. August 2011 Donna died.
When her funeral became a memory and all the necessary death of a spouse paperwork completed any and all meaning and purpose I had evaporated. My consulting gig ended late that year. Here I was standing in a dark, musky, and, abandoned warehouse of memories. A single 25 watt bulb cast an infinitesimally small and unrecognizable shadow of my life onto the floor around my feet. The rest was dark.
Fumbling In Darkness
In my defense I did not fold up and die. I admit I beat a measured retreat into my world. I would posit that cleaning, organizing, arranging, etc. were all to honor Donna and what we build. True to a point. Most of it was a case of OCD and the need to keep moving and doing something even if it was lining up paper clips.
I spend time looking for work in my field, pitching ideas in the Venn of technology, grief, and end-of-life. None of it panned out due to half heartedness and being of a certain age with no creditability. In that darkened warehouse with the shit light of a cheap ass bulb I stumbled around finding what the emptiness held. Yes empty does contain things. I wrote and read a lot on grief and terminal illness and end-of-life. I had a near death experience and a month in rehab. I deliberately pushed the 25 watt bulb so light would swing out in an arc illuminating corners. I began to find more things in the emptiness like the need/desire to write about Donna and our life her life my life. Right now the book is finished nearly laid out and soon to move into self publishing. I began to see there is and are people to hang with and do things though I will readily admit I have the attention span of a gnat and get bored easily. I get bored easily all the time. Which drives some manic behavior. I can’t help but think they really really find me boring as well.
The Specter of Ideation
We all have an expiration date. Either we coexist with it in peaceful diplomacy, fight it tooth and nail or surrender to dark. Once meaning and purpose becomes a distant sunset the partnership with grief envelops you managing the expiration date expectations. It becomes, at times, daunting on an order of magnitude.
My ideation ebbs and flows. It is proportional to my boredom, lack of meaning and purpose and grief. The grief has a mind of its own and closure is not an option because to do so denies Donna’s existence. I will not do that to her and to me. If I can keep the boredom at bay perhaps I can find some meaning and purpose
Volunteering As a Path to Meaning & Purpose
Not sure when I started to consider volunteering. It was not easy to consider volunteering as a life choice. Nothing says retired, old, unless, and without meaning and purpose as does “I am volunteering at…” Don’t get my message wrong. I am not besmirching volunteering. Without people doing it much of the greatness human offer other humans evaporates. It is more about me being unaccepting of me as I am.
I began to think that if ‘lean in’ to my being unaccepting of me as I am and my self identified lack of status in the larger world of success ever penetrating life’s periphery I can pierce its heart of hopelessness and slay it. Why not try volunteering. Oh fuck.
Last summer I registered to volunteer at the 9|11 Memorial and Museum and a local hospice. Hope springs eternal.
The 9|11 Memorial and Museum is a great place to volunteer. They recognize the importance of volunteers and what they bring to the experience. They are also exceptionally well organized and managed. Though going to the museum has moments of sadness. Donna and I lived a few blocks away from the World Trade Center. We experienced 9|11 first hand and didn’t not escape to the suburbs. We stayed and felt it all. You can read my experiences here, here, and here.
The staff is aware that volunteers need to work at different posts and each scheduled day they post you here and there. The duties are very simple help visitors find locations as well as where the bathrooms are and the exits. Not brain science but ,you meet many people from across the globe. At times you have an extended conversation about 9|11, your personal experiences, and NYC. Meaning and purpose? Meh but, I will take it.
The hospice volunteer work is emotionally difficult though the time I am there it is slow. The unit is small and most patients are sleeping and the few family members who are there during the day are usually fine without volunteer help. This was the unit, on a different floor, where Donna was and where she died. It is on the oncology hematology floor. This was where Donna was admitted for a throacentesis and later moved to the hospice. Here, here, and here are some posts on hospice and Donna. It is what it is and I hope that I help families and patients.
December 2017 my friend Miguel asked me if I could help him. Miguel is PTA President of NYC Art & Design High School. He and another parent Saori created and were getting ready to execute a large event in February. It was a Fanfaire ’Not another comic con’ event. Fanfaire was a two day faire that included educational panels, D&D play, cosplay, and booths of artist/students selling their work. I said yes with reservations because of a lack of knowledge of comic books, artists, gaming, and having no kids ever. Not that I was totally devoid of knowledge and was just over my head. Miguel assured me that my role would be to simply help the 10 or so panels get situated and running during the event.
I jumped in to get familiar with the event. The panels were amazing. Topics ranged from comic book creation, to Riverdale the TV series, to Niche Marketing, the comic book process, portfolio reviews, and more. The panelist were luminaries from the world of comic books, animation, costume design, technology and more. Many of the panel moderators were going to be students at Art & Design. I still felt over my head. Yet my marketing and advertising life kicked in and I started to take a bigger role.
Miguel told me that the real driving force behind Fanfaire was Saori (the other parent) who is the daughter-in-law of Neal Adams of DC Comic Book fame which included Batman, Green Arrow, Superman, and many more. Damn I really was over my head here. Saori is a force of nature who’s focus rivaled Donna’s in many regards. And Miguel, well he is work horse who can juggle many many balls and does not miss a fucking thing. Least we forget Frieda, Miguel’s wife, who’s graphic design made Fanfaire shine.
I soldiered on. WTF is the worse I could do? Misspell Neal Adams name, which I did – Neil. (An aside: I went up to Neal Adam’s studio to grab some flyers. Saori introduced me to Neal I shook his hand. My 30 something comic book, video gaming friends were all jelly. As if someone with one foot in the grave has anything a 30 something envies. I will take it.)
Saori, Miguel, and his wife Frieda created a media kit as well as the web site, materials, badges, signage, and more. I was asked to hit up various comic book stores and tech companies to pitch sponsorship. I went to Apple and Microsoft who turned around and became participants. Walked to a bunch of comic book stores in NYC peppered them with flyers. A PR genius friend shared email addresses for local media in NYC. I pitched those media outlets with the material Saori, Frieda, and Miguel created. The day before the event the NY Times ran a piece on Fanfaire in What to Do In NYC.
The two day event took place Feb 24 & 25. On Friday I went to help to set up the gym and the cafeteria for all the tables that were sold to students and other who sold their art. The next day was day one. My role was managing the panels in the auditorium and another room. Making sure panelist were there, sound set up, and slides ready to go.
There was significant more I did which is just stuff. The truth be told, working with these high schooler’s was something new. Walking around with one early in the week to hand flyers out to local hotels, the A/V nerd setting up the panels, the kids who manned the elevator to gave visitors directions. Then there were all the students who bought tables to sell their art. A littered landscape of teens teeming with excitement and some ‘I have to do what?’ They did it whatever it was.
I am old and invisible to this demographic. It doesn’t matter. What mattered was watching them participated and attend this event. Though I hold the opinion children should be sautéed and not heard I was so struck by their enthusiasm and engagement with everyone. I couldn’t find an entitled asshole among them and I scanned for that. Their reaction to this opportunity and what it meant was amazing to witness and be part of. This was Christmas to a group of non-private school, non-entitled kids who had joy written on pimply faces, multi colored hair, and outfits as bright as Joseph’s coat of many colors. I was so struck and grateful to have helped in some small way.
Meaning and purpose comes in shapes and sizes. In some cases it is driven by what one projects to others based on the coin of the realm, ‘Look at my power, my wealth, my car, my employees, my clients, etc. etc. on to infinitum. That is fine and it is all well and good. I lived it and was it. That meaning and purpose then was as good as any and it was not gathered at the expense of others. At least I hope so. That was the coin of the realm which I traded in.
Fanfaire felt different from the other endeavors. The meaning and purpose it served up was nothing that I could turn outward. It resides within me. No one really notices because it has no cashe and to boast or project that doesn’t work. Saying, look I lined tables up or walked into Apple and pitched them is a big fucking yawn. Within me was the experience of learning shit I didn’t know – shook Neal’s hand, met costume designers and more. Working with people who were smart as hell, learning new things, etc. is meaning and purpose. Being a day laborer does not communicate meaning and purpose. To find meaning and purpose you sometimes need to labor invisibly.
Make no mistake about it high school students are just what you think ‘That was fun, next.’ I saw these students being just that, students who were thriving because what Saori, Miguel, and Frieda created from whole cloth. For a nanosecond I put aside my living with no meaning and purpose flicked my ideation off the table and found a little something to bask in albeit for me internally.