This was written a couple of years ago as a podcast. It deserves an update.
It’s a strange and curious time in my journey from caregiver, to widower, to grief ambassador. It feels as if I have navigated my way into the the horse latitudes of life, that legendary becalmed place where I find myself searching for horses to throw overboard as ritual to create movement and speed my journey. It is an emotional desert that I am not sure what to do with or if I will find a way forward. Speaking into a microphone, creating a podcast seems to help. Rewriting this as well.
Identifying my journey as starting at caregiving seems odd since there is a whole shit load of years prior to that 2009 moment when you learn your wife of 28+ years has advanced cancer and six months to live. I guess that is where life for me began, with the specter of Donna's death loomed over us both. Life begins at death? How odd.
That period of caregiving had a manic quality that was relentless in its day to day activity. Today, there is little or nothing being added to my to-do list. Donna’s diagnosis was a clarion call to action, reaction, and head-on charging forward. I closed my business, broke my lease which cost me a pretty penny, sold off desks, copier, computers, file cabinets, printers, the whole shebang. Actually I gave it all away and later learned that you cannot claim these as donations since they were written off for business. In hindsight it was weeks of calls, packing, storing, meeting, and moving things. Part of this effort was finding a space and not working from home. To be home with Donna at this time would have been hard on her. I would look at her with the pain of reality in my eyes and nagging her about how she was doing. She needed her space.
I found a 10’x10'space at an incubator down the street and literally carried a desk, file cabinet and computer to my new ‘office’. All the while going to appointments with Donna for her radiation and chemo treatments and making sure she had meals and meds. I was Action Jackson thrown into doing, finding, and resolving. She surrendered her illness to me and I gladly accepted. And there was all the insurance work to do as well at negotiating a new mortgage to lower the rate since our income was reduced. I am not complaining or asking for pity. I finished each day knowing x was done and tomorrow there would be y to do. It was meaning and purpose on steroids. It was life in the survival lane. It was a survival to do list.
By June of 2009 I was in a new space, Donna was in her first round of chemo, and I was looking for some kind of work. I was blessed, a friend had a part-time job for me at a pharma company doing CME. I worked a few days a week was able to get home easily to make dinner and pill packs. Never missed an appointment with Donna. We did get to go on vacations when her treatments allowed and her symptoms were under control. The days were filled and weeks were filled, there was movement. It was not the Horse Latitude's. Glancing back, was this denial personified? I don’t think so. It was more a sense of doing, making something from less than zero. I miss the frenetic pace of it all.
It was not all that grim. I was hoping to find a new place a new way forward with my work interest. Being inside pharma was eye opening. All I will say is, seriously? Since I was sitting in a tech incubator I threw myself into learning the new digital world. Well truth be known 20 somethings looking to be the next FB or Twitter were not all that interested in a guy who thought Ruby was slippers and python a snake. It didn’t help I was the same age as their grandpa. I was dauntless in hopefulness. I redid my web site, no big achievement except in my mind. I started posting to my blog two three times a week. Learned about Twitter and chats. It was hopeful in the face of ‘This story will not have a happy ending.’ Perhaps that is the missing element today, hope.
A few days after Donna’s death I distinctly remember sitting on the stoop and thinking well there is nothing to do now. I hit the wall and life halted. Of course there was the paper work to complete. Sending out certificates of death, closing accounts, making arrangements, sending notes, and Nina. She needed her walks, food, and insulin. Just an aside regarding closing accounts. Donna had an American Express Card and within two weeks of her death I received a letter from them offering their condolences to me and saying they closed her card. How the hell did they know. I never called. Big data is so creepy. It freaked me out.
Friends and family kept me busy. Fed me. Kept me company. And I had that consulting job a few days a week. This period of the journey was filled with taking what I had seen, felt, knew, lived with, knew about terminal illness, caregiving, hospice, and death. I really really wanted to find a place for this first hand knowledge and understanding. To help others. With all the belief in my heart I thought I could help others. I wrote, Tweeted, chatted, posted, and learned how to podcast. I studied the market surrounding hospice and palliative care even had a business idea or two. There was that funny thing called hope again. And some meaning and purpose. I may have been delusional thinking in the closed world of academic clinical medicine where the size of one's credentials is an entrée and greases the skids I could be of value. Size matters in academia. Or as someone told me, “In business it’s a dog eat dog world. In academia it’s the opposite.” Sour grapes? Nah, I just know my imagined GED doesn’t count for much. Or my ideas are meh.
The consulting job folded. Fine. Cut back expenses. Good. Threw myself into podcasting and activities surrounding grief and loss. All hope was not lost, just some of it. For all intents and purposes I have not left the apartment for three or more years. In February I went on a weekend trip. It was hard but good to see that I could do it. I am planning another trip this week. And perhaps one further down the road. Yet I feel like what ophthalmologists call floaters. Those black spots in the eye that dart away when you look at them. I am a floater in my own life. Allow me not to paint a damning picture here. I get to the gym, ride my bike, read, listen to podcasts, I even learned how to play Destiny. But I am not inspired. This week I did a presentation with a slide deck to an audience. I was pumped. I kind of crushed it. But next steps for this idea is shrouded in the reality of other peoples lives. Their paying attention to me as a way to ground my floating around is not their job. It is mine.
Here I sit, no I am standing since standing is the new black. Not frozen, not lost, not totally hopeless, just wondering if this is all there is? I have food, shelter, but no dog. I have time to do things. I know, I know, first world problems. And those of you with the Nike logo printed on the inside your eye lids ‘Just do it’ I get it. I think this is more about the the insipid nature of loss and grief. Grief is morphing into a new avatar. It is not as active nor is it abject as it once was. It is there like that floater in our eyes, like my floating along in life ungrounded. Could this be my upcoming anniversary tearing at me from the inside? I know I’ve hit a moment where I am flaying at my soul from the inside, quietly screaming. It is coming to a head, my need to find a place, find meaning, find a compass. Yet grief has a life of its own and though there are weeks it is plays by itself, sometimes it just comes to visit, to say hello and remind me, I can own you any day I want. My battle is to own me on my terms.
Horse Latitudes The Doors
When the still sea conspires an armor
And her sullen and aborted
Currents breed tine monster
And her sullen and aborted
True sailing is dead
Awkward instant
And the first animal is jettisoned
Legs furiously pumping
Their stiff green gallop
And heads bob up
Poise
Delicate
Pause
Consent
In mute nostril agony
Carefully refined
And sealed over