Letter to Someone #1

Hey Friend

It has been a minute since I wrote to you. 

That’s funny I have never written you .Now I am trying to create a long and wonderful friendship out of pretend whole cloth. That is funny. At the same time kind of sad writing to no one who I imagine is there. This letter thing was seeded while reading Neil Peart’s Ghost Rider: Travels on the Healing Road. 

This month has been a mix of being emotionally battered and broken. The primary driver is/was Donna’s Birthday and Valentines Day. Every year since her death I knew it was coming. How can I forget, same day. Generally I know it’s coming but the reality is I start to get a grief response well before. I look around and bingo birthday and valentines day is coming. Other events holidays, death, etc do the same. I can feel the events before I see them on a calendar. 

This year the grief loss was there but not as debilitating as other years. It was present and respected. Not unlike the butcher you know who is using his thumb on the scale but it’s okay cuz the rib eye is amazing. I will take my memories and grief because I know they are about Donna and love. Seems fair. Doesn’t it?

Add to that I entered this 2/14 calendar fighting with myself over my complete and utter loss of drive and focus. Plain and simple, I was giving up. Primarily manifest in not doing the stuff (i.e. make the bed, polish the stainless steel, clean the shower, etc.). Don’t laugh doing those things are footnotes of meaning and purpose. And they take time so I wouldn't just sit and stare. My short story remains short and I am not writing. I still went to the gym but drifted though the hour or so there. I cooked meals but they were meh. Any and all meaning and purpose was cast asunder by this failure to engage.

For a few weeks I had my eye on a new volunteering gig. This one was real adult, real serious, and real work. Even as a volunteer there is many many many hours of training, testing, etc. It took me a bit to click onto signup. Needed three references, background check, questionnaire, and application. All good. I was accepted and began training. 

Just for you friend shhh don’t tell anyone. Everyone knows this after 3 minutes of talking to me. I was worried I couldn’t cut it or didn’t want to because I like my looser status. You know my supreme self-confidence is a mirage and after Donna’s death confidence became a dry lake bed of hardened salt. Bitter and impenetrable. Attributed less to her death and more to all the intrinsic parts of my DNA and my life experiences. Baseline Baseline Baseline. 

I started my online training and it was all new. New language and adulting. Nothing I could do with my eyes closed. Fine I would do it. Assessments were good. Took notes practiced. Was working on the next installment. A very important life critical part of this course. That was #2 of 5 what the hell would the rest be like. Got to the end for the assessment etc. (Less I tell the less anyone will know.) You had three chances to pass. First shot close no cigar. Second shot closer no cigar. 

I am officially crest fallen (mild bullshit word set). The truth is I want to vomit and more. I don’t want to be kicked out. I don’t want to have to face the fact perhaps I am really just a looser. I see my classmates and well I can kick their asses. Pretend ego here. I wonder if this is all new to me this panic over not achieving? Insert failing here. 

I owned a business I could have done better but did okay. I was okay. I took losses seriously never broken by them. This is different. Or is it. Have I gotten to this point in my life and what I have learned in the past 10 years to suddenly realize it was all a shit lego castle. I could go on and on with reasons, excuses, logic, and more. It doesn’t matter. I have to embrace my looser status. Feeling sorry for myself much? 

I was at the gym doing strength and intervals which I like. All I could think about was going home and getting under the covers. Except I made the bed so to mess it up mid day is a sin. I am so paralyzed emotionally right now. 

In the end this letter will sit on my site. No social promo for this which means no one will see it. Kind of me being Thoreau and living alone. Just a scream in the forest that no one hears. I feel marginally better because hey I wrote something as pathetic as it is. 

The real screaming and ripping at my emotional soul with words is on my anonymous not following or any following me tumblr acct. That is where the real fun is. Not dissimilar to those phone booths where people can go in and call a loved one who is dead. Tumblr is a dark damp empty cave where no one hears you scream.   

I am going to redo all the reading and testing on #2 to see if I can do the test. Just imagine if I don’t pass and am told thanks but no thanks. 

This Is Interesting #19

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The Timing of Grief

Blake Ziegler writing in The Observer, a student-run print and online newspaper serving Notre Dame, Saint Mary's, and Holy Cross, has written a thoughtful and important article on the mourning process with all its complexities that we struggle with.

 Ziegler addresses his worry that in our grief/mourning we may be stuck in the emotional amber of memories and forget our own lives. He rightly questions that entire topic of moving on or closure and questions do we truly get to address our emotions. He asks if we really to get to move on if we end our grief after the ceremonies. Read his writing it is thoughtful and smart. He questions it simply with this quote:

Yet, sometimes I still wonder if I should be angry at the world for moving too quickly or thankful for the excuse of life, so I do not have to approach my emotions. 

I have my own mantra on this entire closure idea. Closure is indifference. Closure is denial said pretty. Closure is a myth. Ziegler points out:

"We feel grief and sadness but act as thought it is normal and "time will heal."

So very true we act when in reality we need to take a dive into our grief and our emotions. I feel there is much to learn, much knowledge about ourselves, our loss, and love if we look inward.

End-of-Life Wishes for Advanced Cancer Patients: A Randomized Controlled Trial

This was published originally in 2016. It still holds up and says much about how we need to address this issue with our loved ones.

The researchers created a Go Wish card game to help facilitate end-of-life conversations. They interviewed 100 patients with advanced cancer to determine EOL wishes. Patients found the GWCG helpful to them in being able to present their wishes at EOL. And if nothing else being able to speak about our EOL wishes is key. SEE BELOW

The results demonstrated that patients with advanced cancer assigned high importance to spirituality and the presence/relationships of family.

Donna had a different view:

“Now would be a good time to have end-of-life discussions with her,” the Hospice Rabbi and social worker said. “What does she want for her funeral? What are her regrets? Did she find joy in her life?”

Joy? I failed her. All I could do was think of that.

I hesitated for a day. Then next afternoon, alone in the room with Donna, I looked at her in the bed and said, “Donna, perhaps you want to talk about your funeral.”

She looked over at me and said, “Don’t be a maudlin pussy.”

Then she rolled onto her side and fell asleep.

That’s my Donna.

Perhaps the card game would have helped. Nah she was her own person from birth till death.

Untangling Grief: A Psychotherapist's View

Lillian McGuire writing in Thrive Global offers up some very smart ideas on our grief process. The subhead of this title speaks volumes "every person has a relationship with grief. It is a very powerful feeling, yet widely misunderstood." True that.

McGuire worked with Hannah Tate-Smith on this article. One of points they make with I agree with is that we generally downplay our grief if it not over someone's death. We discount our feelings about things.

I know for me that with most people who ask how am I, even early on in my grief journey I said fine. They address this clearly, we are carrying negative emotions even if we say fine. There was link to a picture. It is the best I've seen on grief in our heads.

They offer a list of ways to embrace your grief. Most of these make great sense. I know for me my key to embracing it is writing about my loss, Donna, and what I've learned like what McGuire and Smith are presenting.

Here are their thoughts;

• What keeps you grounded? Meditation, prayer, scents, or a piece of clothing

• Take breaks and learn to say no to a commitment if that is what you feel

• Breath. Seems simple enough but I have found taking some deep cleansing breaths helps.

• Give yourself some time to cry. I see that and have done that though I don’t set out to cry as much as when the emotions hit me if I am reading, watching, writing, or listening. I let it all come to the surface.

This is an excellent and well thought through piece. Worth a read. Perhaps a few reads.

A Decade of Grief & Transparency

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This was originally post at Hot Young Widows Club #hywc between Thanksgiving and Christmas 2019.

Since Thanksgiving the whole grief thing felt like those floaters we have in our eyes. Little black spots that you can see bouncing in your field of vision. Some days harshly bouncing off the concrete wall in paddle ball. Other days a pink Spaldeen sitting in a gutter.

I've been thinking I should do a NYE post about Donna's and her last NYE to kind of address this season of grief. I realized (slow one I am) this is the end of decade and everyone is doing decade reviews of: albums, books, movies, styles of underwear they wore, etc. Add to that I'm listening to a podcast with Dax Shepard interviewing Edward Norton where they got to talking about how when people step out of their mold and take risks that that transparency shown outwardly can be a prism for others to engage or find their way.  

I heard that and thought about us here. Not just #HYWC but any platform or grief support group, etc. I have been posting, podcasting, wrote a book about my grief and grief in general. I was using my grief in a transparent fashion to, one come to terms with it, second share it with others. Somewhere in there I hoped it would help someone somewhere.

Historically way back when we lived in villages death of a loved one was a village event. Wids were not left alone. The community/village gathered around the town fountain or center to support the widow. Grief was a currency of need and support where all gathered to help the one grieving. Fast forward to the 20th century and our grief journey became more and more isolated as populations dispersed to suburbs. In that environ grief was a sorrow carried alone with all its transient suffering.

Today within our community and others we are gathered around a virtual village fountain sharing. Our personal grief shared allows other to see their grief and access it. AND it helps us understand and find a safe place to grieve. Shared emotions and ideas can only serve to help others integrate new knowledge into their world to create a new consciousness.

I guess this decade, as I look back, is one where I have journeyed with my grief to learn and understand me, Donna, love, and others. I, in a way, am an advocate for grief and our collective need to share. I root for my grief and yours. Not for the pain but the window of light it can allow in. I am going to write a longer post about this idea better thought out. For now much love today and into 2020.

The pictures are from NYE 12/31/2010 into 1/1/2011. I think you can see on Donna's face she was in pain. As I look harder at the photos I think she knew this would be her last NYE. Until I can no longer write or talk about these topics she will never not be with me on NYE. 

The Language and Metaphor of Grief

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I’m a huge radio and podcast listener. It’s a primary means for learning, relaxation, and escape. March 2014 I listened to a Terry Gross Fresh Air Interview with the author Karen Russell about her book ''Sleep Donation': A Dark, Futuristic Lullaby For Insomniacs" I was struck by her language and metaphor. The narrator  of that novel is suffering profound grief from the loss of her sister. 

The longer I listened the more Russell’s language evoked new reflection on my grief and loss which I have written about here, here, and here. Yet hearing her words and seeing the images they evoked made me realize I may just be “water boarding the reader” with what I have shared. I thought I would revisit this old chestnut grief to see if I could better capture it. 

Early in the interview Russell reads from her book and one line leaps into my field of vision 'to be evicted from your dreams'. That for those who have not felt grief that is exactly what it is in six words. We have been evicted from our dreams of the life we had, the life we were working toward, and life we wanted. Suddenly we are thrust into a 'Subaqueous state’. For me it has been that way since Donna died. I reside underwater unfocused and floating in a suspended animation struggling to find the surface. 

At the end of the podcast she is referring to another book ‘Swamplandia’ and said ‘Cue ball break of grief where everyone goes into their separate pocket’. How true and accurate, we all end up in our own places when we grieve. Everyone’s grief is different. And I will add for me it is not one place, it moves. My grief is organic. A HCP said to be “You have adapted well to your loss.” Wanting to be the good patient I drank that kool aid without measure. It was bullshit to a point said to clear the desk and chart notes. Yes there are days I feel adapted to my loss, yet that adaption is a moving target that requires us to keep careful aim in order to understand and learn. 

I will live with my grief as my partner and manage it like a tool to grow, learn, and motivate. I’ll not allow it to weaken me. Though I have been evicted from my dreams I will work to regain them each night. 

Re-reading this old Podcast and reviewing where my head and heart are now I wonder

This is Interesting #16

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Finding Meaning & Purpose: A Needed Goal Following Loss

I recently stumbled on an article that was posted September 2013 by Mark Manson on his Web site. The article titled: "Find What You Love and Let It Kill You" is a quote from the poet and author Charles Bukowski. Manson presents Bukowski generally and is on point about all his warts, pain, self-destruction, and powerful writingl. The primary message is that when one is passionate about something pain follows. That is the essence of Love Loss Grief Pain.

I may be wading into my own private Idaho here so bear with me. Manson notes that it’s understood 'you don’t get love without pain'. Nor do you get meaning and profundity without sacrifice. Then Manson writes this:

"Meaning is the new luxury."

This entire meaning and purpose thing has been my emotional struggle. I had meaning when I owned my business. I had it in spades when I was a caregiver for Donna and the docent for her death. Suddenly after her death I hit a wall for meaning and purpose. Add to that the failure to find work or even give a shit all meaning and purpose evaporated. I have written about meaning and purpose here and here. Bottomline for me I want to find how not to languish in my own head about Donna, grief, my life, my lack of life, and more.

Manson sums his view and the view of Bukowski. Finding meaning and purpose is not a five day spa retreat. It is hell and he quotes Bukowski "What matters most is how well you walk through the fire." Waking up one day happy ain't in the cards for most and especially for me. And doing it over and over paying attention to how it feels may just end up with you being changed. Read this and jump to the link for ‘Because you Change’.  (Good stuff) 

So what the fuck does this have to do with Donna, me, and grief? I have been lost since Donna died or that's what it feels like. After reading this I am still stuck in the emotional amber of my grief yet when I look at what I am doing or have done maybe perhaps I am in that walking through fire phase. I am building meaning and purpose with my blog, writing and publishing Donna, A Photo Memoir of Love and Loss, filling my days with habits though I still have goals, and I am learning no one gives a shit and my fucks have flown the coop. So perhaps, maybe, just in case I am on a path to something meaningful.

The Science of Making and Loosing Memories

This was from Caltech's Web site "How Memories From and Fade". This was : animal study where mice were put into a straight enclosure with unique symbols along the walls. At the end of enclosure was sugar water. Newly place animals were unsure of what to do and wandered until it found the sugar water. Only one neuron activated at the first interaction with the enclosure. Over time as the mouse repeated this exercise it became familiar with the task and the symbols more neurons were activated. To examine how memories fade over time the mice were kept off the track for 20 days. When returned to the track mice had formed strong memories encoded by higher numbers of neurons. Using groups of neurons enables us to have the redundency that allows us to recall memories even if some neurons fall silent.

The scientist explained it this way. The more you tell or re-tell a story and tell others  this story each time it is repeated it strengthens the story and fills gaps. Re-telling the story increases the likelihood of the memory persisting over time. That is what happens with the neurons. Repeated telling's increase the number of active neurons.

So to all of use who have lost a loved one, shared our story with others, joined an online platform such as #hywc we are reinforcing those memory neurons and expanding the number of neurons making that memory intractable. It seems we don’t forget as we progress in our grief journey.

Home Hospice Considerations

The New York Times article "Is Dying at Home Overrated?" written by RICHARD LEITER, MD. Is critically important to anyone caring for a terminally ill loved one. It is also something I can speak to first hand. 

Donna was diagnosed with Stage IV cancer and told she had six months of life. The hard work of an excellent oncologist, his team, and Donna’s take no shit attitude she lived for nearly three years. In July of 2011 her third and last treatment option was failing. She developed a pleural effusion which required a hospital stay to have it drained. A week later the effusion could not be cleared and she entered hospice. Below are excerpts from Donna, A Photo Memoir of Love and Loss.

Dr. B. and Dr. S. suggested Home Hospice. When the Hospice intake staff spoke with me, they weren’t wearing white coats. This was not clinical. It was business. The conversation felt like a sales call, done in a busy hallway of rushing physicians and nurses, with families of patients sitting nearby. Here I was, speaking and answering questions about Donna’s death, in the most public of venues for the world to hear. Intake handed me papers to sign. I did not feel like a person about to lose his wife of 28 years, being offered hope and dignity. I felt like a transaction.

The Home Hospice bed and other items were ordered, delivered, and set up in our apartment, with the bed in the living room. All the while I was imagining Donna in the bed while I sat next to her, catching up on the episode of Sons of Anarchy she missed. I pushed out of my mind having to bathe her, change her bedpan, attend to her pain meds, and wake in the middle of night to comfort her. None of that was ever part of our plan thirty years ago but I knew when the time came I’d face it like a Marine. You do not leave your dead or wounded behind. We would take that final march to the Medvac helicopter that would carry her away. 

Early that Saturday, Dr. S. spoke with me at the hospital. The floor was quiet and Dr. S. was at the nurse’s station, looking at patient charts in thick, brightly colored plastic binders. He didn't really look up at me. Or maybe I don't remember because the numbness of it all was taking its toll.

He said, “Dr. B., the Hospice staff, and I think it would be best if Donna enters the Hospice unit in the hospital. The care she needs, even with medical aides, is beyond what Home Hospice can do.”

I had been holding on to that trope of a wonderful, peaceful death at home, surrounded by friends and family circling her bed like supplicants kneeling to receive the communion of her life passing. Now I was hearing that even if she came home, she wouldn’t have that. I wonder to this day if Dr. S. was straight with me, or if they all thought I was a caregiving failure and couldn’t be trusted.

Dr. Leiter spoke to all of what I pulled from the book. The medical staff who I trusted implicitly understood both Donna and I and knew dying at home was going to be beyond my pay grade and my emotional intelligence.

Dr. Leiter's article is worth a careful read if your loved one is facing death.