Thirteen

Dear Friends,

A week and a half ago, we left La Jolla and have been in Los Angeles since, living at Jess and Phil’s house in Echo Park. Those words are probably the simplest, clearest sentence that I’ll be able to come up with in this update. And possibly the most positive. It’s been an almost mind-bending swirl of changes, some good, most not so good, along with their echo of emotions on all of us here. I don’t know one day to the next if there will be improvement or decline, which is what most makes writing an update difficult.

Betsy has regained some motion in her paralyzed right hand, arm, and shoulder, but the loss of strength keeps that gain from being a usable resource. She’s confused more and more and asks questions intended to build an understanding of where she is and what she is doing but much of the time doesn’t appear to have the ability to make sense of the answers. And purist that she’s been through all the years we’ve been together, she’s now thriving on bacon and butterscotch, though her appetite is declining. She’s often in a semi-sleep state, sitting with her eyes closed. Something that soothes Betsy is music. And she has her favorites. She listens to a song on loop for hours at a time, enjoying every moment. Here’s what’s on her playlist:

Peaceful Easy Feeling, Eagles Cassidy, Grateful Dead Closer to Fine, Indigo Girls (and opera singer / vocal teacher, Alexys Tiscareno, did a great rendition of it on video for Betsy. What a sweet gift!) Power, John Hall Icarus, Paul Winter Consort and many by Crosby, Stills, Nash, and oftentimes Young as well as many by Joni Mitchell

Hospice has provided a hospital bed here which is positioned for Betsy to be able to look out the floor-to-ceiling windows at the vast greenery which lies outside this house-in-the-trees. Having traded the ocean for the forest, she is still surrounded by nature.

But, honestly, the situation is very difficult. I’m watching the shift from bad to worse move both vertically and horizontally. And Murphy’s Law seems to repeat endlessly like two mirrors facing each other. The entwining depth of difficulties makes me think of the Grateful Dead’s lyric, “if the thunder don’t get you then the lightning will”. Just as Betsy’s systems are breaking down, the infrastructures, both big and small, explode with entropy. I’m sorry to say, in the 3D world in which we live, it’s hell. What a blessing it is that we’re not stuck in that world. We’re elevated by the love that transcends circumstance.

And in response to the routine and robust challenges, the family has been great. Add to the united team of Jess, Phil, Cassidy, and me has been Phil’s dad, John, who had been visiting from New Jersey and was a great help. He left this morning, just after getting to see Story begin to crawl. Sure, there’s the occasional tension that accompanies the inevitable array of conflicting needs, manifesting with a drop in emotional intelligence while individual needs are being negotiated. But this is quite a time for all of us. In the life we’re sharing outside that 3D world the space is sacred and the time is surreal. We’re all right here, sharing these very present moments.

There have been some sweet visits from dear extended family locals as well as locals-of-the-heart, folks coming here from as close as Toluca Lake (here in LA) and as far as Vashon Island (in Puget Sound, off the coast of Seattle). Betsy comes to life with each of those special engagements and talks about them long after they’re gone.

How am I doing through all this is a question I’ve been getting though texts, emails, and calls. I think I’m taking care of myself - in my own way. I’m good at responding to the situation at hand and compartmentalizing such things as emotions to deal with when the luxury of doing so eventually presents itself. I’m resilient and fortunate enough to call the present moment home. I feel prepared for what unfolds and view each installment with an innocent, curious and benign “so now this…” perspective. I’m not getting ahead of myself, and staying with what’s now and immediate. I haven’t been a coffee drinker (though some of you may know my Ziggy Marley experience started with a strong cup of coffee) but because John made a good pot of brew every day, I got into it and it may have been the single thing that keeps me going amidst my 4 month long sleep deprivation. I think my book writing project is on vacation somewhere in the Caribbean and I do miss it when it sends me postcards. Overall, I’m doing well. My kryptonite is sleep deprivation and concern for the kids but I see myself living these moments fully - grounded, floating, tearful, joyful, appreciating the story that is Betsy, Betsy and me, all of us in the family, the family in this time and place in the universe.

A number of you have called and written, suggesting that we start a GoFundMe page. The motivation was to defray the extensive expenses we’re incurring in support of Betsy. Already, a number of you have donated to that cause and we appreciate that so very much. It is true that since the first MRI back in October, the cost of living has escalated in support of a particular quality of living. So, in moving with the times, and in response to the financial reality we’re facing, Phil’s dad John created a GoFundMe. If you would like to make a donation, we humbly welcome that. While Betsy, Jessica, Phil, Cassidy, and I most directly appreciate any donations, and while that appreciation is shared indirectly by many in the community, we appreciate the contact with you and the love and care that has come across so substantially in these past months.

In closing, I apologize that this update is a bit choppy. My distractions have distractions and I’m finding that holding onto a train of thought is akin to time travel. Again, we all hear so much appreciate your emails and the love and support that we feel in all the communications.

Love,

Jimmy, with the family

John from below and Phil from above, inspecting the ramp they had just built to get Betsy in and out of the back door.

The view out the window next to Betsy.

The view in front of Betsy’s bed.

Story, the grounding for Betsy’s newly chosen identity - Grandma.

And of course, Sookie. Always protectively close by Betsy.