The majority of this was first posted in March 2018. I want to revisit the topics here and add some new insight (new links included). This is especially important for others who share a similar grief trajectory. It never hurts to learn more.
In 2009 Donna was diagnosed with stage IV cancer and given six months to live. Since that moment I have been playing hide and seek with life's meaning and purpose, out of control self-loathing, and the ever present specter of suicidal ideation. Just writing this evokes a paralysis because I have no understanding and no sense of finding answers for me, let alone facing myself 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 vacation, and did stuff other than work. But my sefl-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 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 no 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 did 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 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. The book “Donna: A Photo Memoir of Love and Loss” is published. 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, 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
Not sure when I started to consider volunteering. It was not easy to consider it as an option. Nothing says retired, old, unless, and without meaning and purpose as does “I am volunteering at...” Don’t get my message here wrong. I am not besmirching volunteering. Without people doing it much of the greatness humans 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.
9/11 Tribute Museum
During the summer of 2017 I registered to volunteer at the 9|11 Memorial and Museum and a local hospice. Hope springs eternal. Update: I left and joined the 9/11 Tribute Museum where I give tours of the site from my perspective of being here on 9/11. I left to become a tour guide at the 9/11 Tribute Museum.
The 9/11 Tribute Museum demonstrated to me there are places where you find a family and the sense of belonging. This museum was and is a shared common bond around September 11, 2001. We were there, we lost someone, we worked in recovery, or we volunteered. Crisis and fear are the tendons that connect the human spirit and love.
Hospice
In 2017 I became a hospice volunteer. 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. I have a special place in my heart for hospice. As I have said frequently hospice gave Donna so much and saved my life.
Fanfaire
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 to be 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 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 for 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.
Crisis Text Line
A few months ago I heard a couple of podcasts interview the CEO of Crisis Text Line Nancy Lublin. I was so struck by her message, knowledge, and passion I began to look into CTL as a volunteer opportunity. Lublin TedTALK here.
In February, last month, I sent in my application to volunteer on the Crisis Text Line. I filled out the application, submitted three references, and completed a background check. I was accepted.
I quickly selected a Cohort Training date. And thus began 30+ hours of training that was reading, tests, role play, and more. This was new to me. Not learning but what I was learning and the gravity of becoming a crisis counselor with CTL. Every texter is asked about suicide and we are trained on how to move up the Risk Assessment Ladder to determine if there is immediate risk. We learn how to give strong positive validations. How to build rapport. How to help the texter identify a plan to manage their current crises.
After I graduated training I needed to complete 10 conversations. I did. My eyes were opened my heart broken. I saw first hand what a crisis looked like and read like. I felt the heart break of someone else. I felt my own heart break wondering if I did enough. Did take a “Hot moment to a cool calm”? I did with the superior help of my online platform supervisors. Most important to this post is that I found the lost meaning and purpose in my life. I became part of a loving, supportive, and giving community. There is more on CTL here, My Two Families. I cannot include Hot Young Widows Club here.
Addendum
Don’t worry I will impale myself back onto the entire self loathing and crashing against the emotional shoals of my life, my grief, and my forever seeking a place to reside. For now I carry this Crisis Text Line, The Hot Young Widows Club, and all my volunteer moments as a talisman telling me meaning and purpose abounds, if we look. Volunteer work is key at this rushing expiration date time in our lives. It also offers up a topic to tome TL:DR for you all.