Fourteen

Jim Lehrman
Oct 2, 2023
7 min read

Updated: Nov 21, 2023

Date: March 17, 2023 at 6:33:46 PM PDT

Dear Friends,

March 10th. Betsy is resting and while I would want to take this time to continue writing back to those of you who have responded to my previous email and those who have donated to the GoFundMe, I need to override that desire and instead give another update. Things are moving that fast with Betsy.

Let me first acknowledge that I will still send out individual responses but not in as timely a way as I would like. As it’s been, I don’t think any email I’ve sent out was the product of one focused uninterrupted sitting. Relative to the GoFundMe, we’ve surpassed our goal. I was hesitant in putting people in this position but I’ve been so moved by each person’s giving. It feels like tears of appreciation flow from my heart. We, here, are all so moved. Thank you all. (Whether you contributed, or sent me an email, you might be thinking right now, “Jimmy, you don’t have to respond to what I wrote you!” But I do. I would not feel… for lack of a better word, whole, leaving a heartfelt expression of compassionate connection unacknowledged from my own heart.) What I’ve received from you has been so substantial and soulful. I want you to know how much I appreciate it - the emails and the donations - and yet I need you to know how difficult it’s been responding back to you. Even a simple response on my part can get stretched over move than one day given the cascade of interruptions that occur. The situation here has been a moment-to-moment dance of vigilance and diligence. Betsy’s decline started speeding up right after my last update. Prior to that, she had been through stages of peace and acceptance, followed by peace in delusion (see the note, below). Then her state became laced with disorientation, delirium, confusion, and pain. And it was a struggle for her to make peace at that stage. Pain came in the form of severe joint stiffness, muscle aches, and breakdown of body systems, as well as anxiety, anguish, agitation, and such a sad, strong yearning to “go home”. While I remind her that “home” has always simply been wherever we are together, she wants so so much to go back to our normal lives, as abnormal as they have been. That description of how she’s been is in past tense. Today, March 10th, is the first day Betsy is hardly responsive. She seems to have crossed another threshold in her progression. She used to be ravenous but yesterday and today she's had no food. Today she is drinking less fluids, too. She hasn’t gotten out of bed for a few days and today she is very quiet, speaking in sparse whispers. Her eyes are shut even as she watches Moana for possibly the 20th time (generally twice a day for the last 10 days), a focus that calms her. It seems to be an effort to open her eyes. When she does, she’s a bit glassy. Watching Betsy decline and be so painfully affected by losing touch with reality tightens the muscles behind my eyes and in my throat as I continually hold it together for her. She's still had enough lucidity to know she is confused and disoriented. In the past couple weeks, she’s asked again and again where she is but could not understand the answer. Seeing her having been lost in delusions and fixations and physical pain has been difficult to hold; now her helplessness has commandeered her ability to communicate and all I can do is be there for her and hope that she knows it, while also doing for her what I can and hoping that that helps relieve pain, discomfort, anxiety, agitation, suffering. Pills that are supposed to do this and liquids that are supposed to do that all seem to produce disappointing results and I feel helpless in Betsy’s suffering and impotent in responding effectively to it. I think of the scene in Terms of Endearment where Shirley McLaine screams hysterically in the hospital for a nurse to do something to relieve her daughter’s pain. But in this case I'm the nurse and there is no hospital. I’m not alone here, though, with the girls and Phil, all of whom help in all the ways they can. Even with her mothering of 8 month-old Story, Jessica is being an incredible assistant to me. She’s got her own double-duty sleep deprivation, yet she is so present and responsive. Cassidy now has an apartment not far away and comes and sits with her mom, rejuvenating her with stories of adventures and exploits in various esoteric magical places in Los Angeles. Her relationship with Betsy through her whole life has been very special and this is very hard for her. She’s spending most of her time putting things together for life after Betsy. And Phillip’s responsiveness is grounded in keen attention from the background, expertly measuring how much he should do without infringing on roles Jess and Cass can play. Phil’s dad went back to New Jersey and was replaced by Phil’s youngest brother, Luke, who helped mellow out the space with music and his meditative spirit. Betsy is happy to be with the family and delighted to watch Story learning new things but it’s painful for her to have the carrot of grandmotherhood dangled in front of her only to be taken away so soon. One darkness she has fallen into in these past couple weeks is how unfair that is, and how unfair all of this is. While there’s no way things are supposed to be, from our human perspective this is so unfair. But reality, and that slice of reality called life, doesn’t play by rules. It’s hard to remember that. Or at least to accept it. Thirty-five years ago, during a ceremony in which I was being certified to do a Japanese psychotherapy based on zen buddhism, I was given a koan that I have had the pleasure and pain of exploring through the years: how do you accept the unacceptable? As I mentioned above, there are many interruptions. In doing anything that is not attending directly to Betsy, especially writing anything, I’m so often kept from completion. Life these days is a climb up the face of a mountain, with tethered falls that keep me working my way back to the point I had reached earlier, a traverse which I’m finding can take days. I might have included more in this email but the falls are telling me to cut my losses and send it out. Some fragments to add before closing… March 11th. At 10:00 last night, just as I was going to bed, Betsy voiced with a plea in the darkness, “thirsty” and that began three hours of coconut water, DJing her music, and making and feeding her dinner, her appetite having miraculously returned, along, surprisingly, with her energy. She was fairly lucid this morning but faded again by 11. And at 2:00, Sister Claudia, who is the Mother Superior of a convent who’s mission is to care for the sick, came to see if one of the nuns could come one night each week so I could get a good night’s sleep. During the hour-long visit, Betsy was as she was yesterday, hardly responsive, but afterwards, she was able to communicate to me both in words and radiance that she loved Sister Claudia. I’ll get a call tomorrow to let me know what the nuns will be able to provide. A visit from our dear friend who was the Jimmy before me in Betsy’s life (making me Jimmy #2) overlapped by minutes and, though Betsy was still minimally responsive, she (and I) enjoyed that visit, too, tremendously as usual. March 12th. It’s 8:30 am and Betsy is still sleeping after 3 bouts of severe and debilitating digestive distress lasting from 5 pm until midnight. Morphine calms her from the pain and panic and at the same time causes the source of it. Cancer of the brain is a cruel disease. But, as low energy as she was yesterday, she had such a sweet time with a dear friend who visited after Sister Claudia’s visit. Brain cancer is entropy at its most cruel. She is coming undone on every level and we're in the enTropic of Cancer. (what, is that a joke? a play on words? am i being light? or am i just giddy, pushing past exhaustion? or is cynicism, the tip of the iceberg of anger, bobbing out of this seemingly endless ocean of agony in front of me? or just the result of chronic sleep deprivation?) March 12th, 3:30 pm. Sister Claudia returned and brought Sister Daisy with her. Sister Daisy will come tomorrow night to enable me to hopefully sleep through the night. Betsy was unresponsive through the visit. And, before that, Jessica’s friend came and gave Betsy and me a healing sound bath, which was wonderfully relaxing. Betsy was unresponsive through that, as well. I want Betsy back and, like her, want to just climb back into our RV and sail away into our next adventure, together. My keyboard becomes a walkway for my personal woe, my fingers like children's feet splashing through the puddles in the rain of my tears. Delirium, delusion, confusion, and pain; morphine, Haldol, enemas; Her brain invaded, consumed; She's here and yet gone, slipping into the next existential plane. Thanks for being in this with us. We feel so much support from the world you make for us. Love, Jimmy

(Note from above) In the early stage of Betsy’s situation, she and I had a conversation about death. Betsy was at peace with the possibility that she could die sooner than she expected. She was clear that she wanted to survive the cancer and live to be the grandmother she was so happy to have become but accepting that things may not go that way and that she may not live to see tomorrow. We even flushed out some details she would want for any sort of Celebration of Life service. But in the next stage, she took on the belief that she had conquered her cancer and the tumor was gone. It was clear to us, though, through that stage that the tumor was only getting bigger, not disappearing. And it was too late to get involved effectively with any treatments, conventional or alternative. So we chose to support her belief, indulging her in her rich visions of the future. As painful as it was to play along with the delusion while knowing the truth, we knew that nothing constructive would come from setting her straight. She was so happy and we didn’t want to change that.