My Story

There are ever-widening circles of folks who care about Richard and his health. We want this site to serve as way to both let people know of any updates as to his condition, as well as a single place where everyone can share their own thoughts and wishes for him. This will help me to conserve my energy and focus in order to be with Richard. Emilia is co-contributor here and has been holding so many strings as we have swerved into another chapter for me and Richard. She will also post here as needed.

For those who didn’t know, here is a brief summary of Richard’s journey with cancer. It began in the fall of 2016 when he was first diagnosed with primary central nervous system lymphoma. Over the following eight months, Richard underwent many chemotherapy treatments, radiation, and finally a ‘consolidation’ treatment of brutal chemotherapies designed to kill every cancer cell in his body and to decimate his bone marrow. The doctors he worked with at Memorial Sloane Kettering transplanted his own previously harvested stem cells to begin the process of rebuilding his immune system. When they found no signs of any cancer he was discharged, and he seemed to be in a slow process of recovery throughout the summer of 2017. By October, Richard felt well enough to restart his practice, working with clients through Skype sessions online. He was very pleased to return to his work which was one major focus for his own healing process.

Unfortunately, he began to feel very depleted again over the course of the next two months. He had two seizures and went in for another CAT scan of his brain. The doctors discovered that his lymphoma had returned to form a new brain lesion on his visual cortex. He entered an experimental drug trial that initially seemed to be working. But he began to lose cognitive clarity, becoming very weak and often confused. He lost eyesight first in his right eye, and eventually in much of his left eye as well. It was clear the new drug had failed in fighting the cancer.

In addition to the growing lesion, the cancer had metastasized as free-floating cancer cells in Richard’s cerebral spinal fluid, washing every nook and cranny of his brain. This morphed into Leptomeningeal Disease, which is a terminal condition that drugs can’t alter. MSK had him back in the hospital for 10 rounds of full brain radiation to give him some temporary relief from his symptoms. His symptoms soon included back pain. He has now had new radiation aimed at his spine. These final radiation treatments, and any further medications are palliative, not curative.

After these radiation treatments, Richard is now in less pain and headed home to our rental house in Bearsville (on Friday, February 2nd), where he will be in Hospice care. He has shared repeatedly that he cannot wait to come home and live the rest of his life with his family and friends around him. He is working hard to stay open and present to every moment he has left. Despite his ongoing cognitive confusion, he is still very aware of those he loves and those who love him. He often says of his many caretakers, “He was so kind. She is so kind.” His passionate open heart continues to touch everyone he meets, and everyone he loves.

We will update you all after Richard’s homecoming, and will continue to keep you posted on how this next chapter unfurls for all of us. It is with deep sorrow and gratitude (and I am learning how much those states coexist) that I write this. Please share whatever you can, ask questions if you have any, and know that your attention matters, that your own heart beats with his, that he is breathing the same air as you are, that the earth spins for us all. Judi Bachrach

 

Richard is home

by Judi Bachrach, February 2, 2018

Richard was at first frightened and in pain from his trip from Manhattan to Bearsville today. But once he calmed down, I calmed down, and the coordination of arrivals with his brother David, the new home health aid, and the initial hospice evaluation team worked out despite his late discharge from Memorial Sloane Kettering. After he settled in and was given some pain medication, he fell deeply asleep. As David joked, “He may not be not sawing wood but he sure is sawing Z’s.” OK, Bachrach guy jokes. You had to be there.

Richard knows he is home, and alternates between sleeping and a little bit of conversation at a time. We said something about getting him into a comfort zone. He promptly asked, “Is there an ice cream zone?” David told him he stopped on the way here and that our freezer has many delicious flavors of ice cream to choose from. ” Can I have some now?’ We said , well, after dinner. We are cooking the last leg of our very own home grown lamb for dinner in honor of his return tonight. Farrell brought over an extra space heater as this cold house won’t get above the mid 60’s on the very cold nights we are expecting. Thanks to Cathie and Farrell for that.

We anticipate a quiet night for all concerned.

 

In the Overall Scheme of Things

by Judi Bachrach, February 4, 2018
This happens to initially be to a cheerful update for Richard, but first a short story. My mother, Barbara, passed in March of 1993. I remember sitting in her living room (just a few miles from this rental house) looking at her checkbook register and worrying about her financial situation. The hospice nurse came running in from her bedroom holding up a glass. “Look,” she said with excitement. “She just drank half a glass of water

I looked at her blankly, thinking, ‘Really? And that is something to be cheering about?” This morning I have to pull out a pinch of self forgiveness for that younger, hurting me. The nurse kind of deflated and said, “ Well, I suppose it’s not that important in the overall scheme of things.” Now I see how very important it was. Every moment is just as important as the next. And so it is with Richard. The nurse was attending to her job, sip by sip, and I now can thank her for showing me that half empty glass with the dangling straw.

Last night Sheanka had Richard sitting up in the wheelchair for over an hour. She wheeled him to the dining table and David and I sat down for the three of us to share our meal together. Sheanka fed him leftover lamb combined with the fruits of Amy’s afternoon work. Then we got into the Ice Cream Zone. Richard reached out his hand and grabbed his spoon. He ate every bite from that bowl by himself. I know from personal experience how much core strength it takes just to sit up when you are that weak, and it was a very fulfilling dinner.

That was the good news part. He sat up at breakfast today when David’s Waffle House opened for pancakes and delicious Tree Juice (maple syrup). Richard ate his share but soon was nodding off. For the rest of the day, he barely stirred from his bed. David sadly took his leave and Bob (Richard’s oldest brother) and Eric, his son, arrived. They had him open his eyes to look at a large photo of the three brothers and Eric playing tennis at a family vacation a long time ago. Richard seemed to recognize and identify them all, but again he slipped away somewhere none of us could track.

He ate some dinner in bed with his eyes mostly shut and promptly fell asleep. I can make sense of this as a day of recuperating after the trip home, sitting up with us so much the day before, or…I don’t know. It may just be the disease having its way with him. Every day is a new one and it may be that no real pattern or schedule will evolve.

Tomorrow, Kevin, his male hospice nurse will check in, the one whose great reputation precedes him. It is comforting to know Kevin lives very close by as it has been snowing all day, now followed by rain and freezing temperatures overnight. Called a wintry mix in these parts, it could be a real icy mess outside tomorrow. It is winter, and in the overall scheme of things, it is good to know that Richard is here safe, and warm, and loved.

Life at Sea

by Judi Bachrach, February 5, 2018

Richard is not speaking much now, though he can still hear. Yesterday his body tried to respond when asked to ‘give Sheanka a hug’ so that with his arms around her she can lift him off the bed into the chair. Even that appeared to be too difficult. I held his hands clasped together behind her back while she finally lifted and turned him to sit down. He repeats my name if he hears me greeting him, but it is a repetition, not necessarily an acknowledgement of me leaning over to kiss his face.

It is an echo of our connection from the shouts across the canyon of time initiated over the course of our lives together. Richard heard Bob’s name and he spoke it several times with just the hint of a questioning inflection. Bob held his hand to assure Richard that he was here with him. There is still a tenuous connection to our world but it is not always possible for us to follow Richard into his.

Today we acknowledge that since Thursday, he has now become incontinent. I don’t mean to offend but I am obliged to share what I experience. I need to share how it is in our home- not the just the spiritual ‘good’ death part we all wish for him. His hospice nurse (Kevin, a wonderful man who is large in love, presence and strength) said he felt that Richard could have a dignified and peaceful end. After examining him, he said when it is the brain involved in end of life issues, it is very difficult to estimate when that peaceful end will come. As long as he is eating, the hard wired instruction to survive! nourishes the animal body and he is still here… though he didn’t even ask for ice cream after he was fed his dinner last night. Tonight we will be sure to give him some, whether he asks or not.

My friends ask me how I am. I say, “It is easier now that he is home from the hospital. The physical separation while knowing he was already leaving me, was excruciating. I howled alone in the house whenever the reality struck me.”

I listened to a podcast with Stephen Jenkinson (https://www.lauriebrown.ca/pondercast-episodes/death) and he called it keening. He described how it comes on in short bursts because you cannot sustain that level of grief for long. That was certainly true for me. I am not keening anymore these nights once Richard was ensconced here in the hospital bed. I had wondered how I would feel once there were stranger/angels in my house attending to Richard night and day. But it is not their presence that has tamed my vocal heart eruptions.

My grief is in a different phase today- a call to be present in every moment that I can and still negotiate the ongoing impersonal world. I still have to prepare for my bookkeeper in tax preparation. I still have to pay my angel aids, make sure the garbage goes out, see my own healthcare practitioners- the world goes right on asking me to dance along. I am doing so as best I can. There is sorrow, ever present sorrow, but it is also a huge relief that he is in this home. And I am simultaneously overwhelmed to be the necessary point person for every one who touches in with us.

This morning Richard woke up confused, restless, and scared but he was more verbal. He was trying to join us on our shore. He ebbs and flows on a vast invisible tide. Like birthing my daughters, the contractions are working to open the doorway. It seems an inevitable comparison- but it is literal, this coming and going of babies and those who are facing eventual death. He moans in consternation with body distress, and then falls into a deep relaxed sleep when it has passed. He eagerly receives his food with open mouth and smacks his lips in appreciation. He sleeps a lot. And he cries when he feels an emotion because he can no longer articulate what is flowing through him in any other way.

What touches us all so much is that he remembers who his aids are and says to them when he can find words, “ Thank you, you are so sweet, you are helping me, or you are very good.” His love of connecting deeply with others is so innate, that even when he can barely comprehend what is occurring around him, he offers his gratitude, enfolding them in his lifeboat at sea. He makes it easy to understand that beneath our clever minds, and our endearing quirky personalities, we are Love itself. Whatever our individual beliefs and faith, and however we connect the dots to make sense of the unbearable Mystery, we are afloat in Love.

 

A White Turtledove

by Judi Bachrach, February 6, 2018

 

Jesus, Don’t Leave Me Alone

With many small notions

with unguents and potions

like a ship on the ocean I

live this long day…

 

Trying to find a reason

before this cold season

takes the leaves from the trees

and takes the day away…
chorus: Jesus don’t leave me alone

all closed up and dying (crying)

Jesus don’t leave me alone

ah—ah—ah…
In my room I assume

that the light in its brightness

will cut through the darkness

and put an end to this gloom

looking for someone to love,

a white turtledove whispers in my ear,

these words that I still hear…
its bitter to have

much better to hold

and though love last a lifetime

it will never grow old…

(chorus) (first verse) (out)
Richard had a very social day today. Bob and Eric left this morning and he was agitated after they said their goodbyes. He keenly senses transitions even if he can’t summon language when spoken to. I told him about how wonderful the visit was and he murmured his acknowledgement. Eric is an MD and he is one of the good ones. He was right in there helping the aids with maneuvering his uncle from bed to chair and getting him get cleaned up. When incontinence became an issue, he enlightened me about a Texas catheter (you can look it up) and the hospice nurse came with one today. Bob took it upon himself to deal with the funeral home in advance of our needs so I don’t have to deal with the business part at all. I thank him and Reba (Bob’s wife) for their support in that and every way

Jason and Arlene Shulman decided to seize the day to visit before the upcoming winter weather descends. Jason spent some very personal time with his friend of so many years. He concurs with my sense that Richard is not yet turning away towards the other side. When Carey Conaway organized a circle of love for me before Richard came home, several folks mentioned his vitality, his earthy sensate life. (see the new photo in the gallery with his two Halflinger draft horses that his friend Bill sent in). I sense that it is waning, that his tethers to me are becoming more translucent, elongated, but they are still attached. Maybe they always will be?

Kevin, the hospice nurse, came in with the new equipment and framed the current situation like this: “Sometimes there is a disagreement between the body and the spirit. The body wants to stay but the spirit wants to go. That causes some friction and restlessness. Eventually they will come together.”

Jason took out one of Richard’s guitars and began to play for him. At first Richard cried because he feels so much that he cannot express. Then he calmed down and only cried more as Jason found songs that touched him, ones that he knows. Jason said he had not played for a very long time (not so much that I could tell) and began to play one of his own tunes. He kindly wrote the lyrics down for me as you see them above.

When he got to the chorus, “Jesus don’t leave me alone,” it was obvious it moved Richard- we all felt, (I noticed Sheanka had a tear in her eye), that Jason was singing for him those exact sentiments, those exact words. When Claire brought out her harmonium, the resonance with the music happened again. We were all chanting in harmony together and we thought Richard was deeply sleeping, feeling calmed by the experience. Then he said very clearly,”Radhe, radhe,” one of the words we were using. Arlene and I exchanged glances and there were more tears in our eyes.

Carey and Jac stopped by after that, bringing their love and more ice cream- his very favorite brand of mint chocolate chip gelato. Then Farrell stopped in to check on things- he is our point person during tomorrow’s snow storm to see that we still have power, something that happens frequently enough to consider. Farrel, being Farrell, hospice trained man that he is, said to Richard when he was leaving, “You’re a handsome guy.”

Richard said back to him, “ So they tell me.” “You’re also a funny guy.” Richard replied, “They tell me that, too.”

The white dove flew in and out the window of our hearts all day long. I am so weirdly blessed.

 

Snow

by Judi Bachrach, February 7, 2018

Today I got up early and Sheanka said Richard had a restless night with little sleep. I thought I heard his vocalized juddering, “enh, enh, enh,…. enh, enh, enh,” echoing through the house, but I tuned it out to get my own rest. It is hard to turn away even for a moment but I knew I had to take care of myself and sleep. I sat with him while the reddening dawn sky lit up, preparing to storm. I sang to him for a while. His palsied shuddering calmed down a little.

Me: “Are you hungry?”

R: “Yes.”

Me: “Sheanka is making you breakfast. Do you want some oatmeal?”

R: “Yes.”

Me: “Are you in any pain?”

R: “No.”

Me: “Your body is still very restless and you had a restless night. I think your body needs to sleep after breakfast. I can give you some medication to help you sleep.”

R: “Yes.”

“The hospice nurse said your body and your spirit are in different places. Your spirit is getting ready to leave but the body says ‘no’ right now. Your body needs to rest.”

R: “I want to leave.”

Me: “You want to leave what?”

R: “My body.”

Me: “Your body has cancer and it is making you very sick. I can understand you wanting to leave it.”

R: “My brain. It’s in my brain.”

Me: “Yes, it is. I am so sorry that your body is ill and makes you so uncomfortable. Your body can take all the time it needs to leave, love. You have all the time you need.”

R: “I have time. My body has time.”

To Sheanka, while eating his meal: “Is there a cup of coffee?”

 

It is snowing heavily, as advertised. The hospice nurse assured me he will be here midday making his way over the mountains to replace the Texas catheter with an internal one. Richard is simply too restless. When Kevin arrived to complete the unpleasant task, it was clear Richard’s bladder had not fully emptied before this and had been creating a lot of pressure. After Kevin left, Richard agreed to more morphine so he could sleep. He refused an offer of lunch for the first time, but ate some dinner later this afternoon with his eyes closed.

I realized last night, that since he came back from the hospital, I have stopped comparing “my” Richard to the dear being lying there in the hospital bed. I am sure I will continue to mourn that former man forever, but right now, Richard is a man who is dying. He isn’t who he was anymore. He is the moaning confused sweetness I kiss and caress in a twitching neurological costume. In that wild acceptance to love what is before me, I see that he is also me on that bed. He shows me that we are Love in a mortal costume.

I am not following him now. He is leaving me and I am staying here. I am clear on that, though astonished that we ‘decided’ to play out the end of our relationship like this. But by letting go of his former personhood, I see more breadcrumbs on the path to where we are headed. When the Dalai Lama came to Woodstock some years ago, the stage for him was set up in a field next to the Woodstock cemetery. He said something about us all coming from our mothers, and then laughed and pointed to the graves. “And that- is where we all are going.” We laughed along with him, there on our festive picnic blankets, greeting old friends and meeting new ones.

Snow continues to cover my world in its cold embrace.

 

World Maps

by Judi Bachrach, February 8, 2018

First thing, I need to tell you how much it means to me that you walk across this cyber bridge to stay in touch. Knowing you are there, a dream team of lifeguards, you help to keep my head above the waters. Emilia and I both said to each other yesterday that we feel a little crazy. The hospice folks use that exact word, assuring us this is the new normal. This loss of words, the realization that I didn’t understand a thing just told to me, the blank staring into space, getting into the filling bathtub half dressed, the racing chaos of my thoughts, the tumult of my emotions, sudden tears- all of this is grief at work. And my bookkeeper is still coming over today and Emilia is still teaching classes and attending meetings; ‘duality is the comic tragedy of life’, I wrote to Arlene today. I thank you all for attending to what I send out over the bridge.

Our Family Continent is losing the Fatherland, the husband, the brother, the uncle, the friend, one of our most treasured countries. Richard’s land split off from the rest of us in a giant fissure last year. We are watching it sink slowly into the waves. Helpless, we watch the cancer induced destruction of our world as we know it. It will disappear, create tsunamis, rippling out effects for years to come, washing up artifacts on distant shores. How is this possible? Our climate is irrevocably changing.

But he had a very good night, meaning that he slept deep beneath the grasp of his wounded neurology. After the non-stop body shaking of the night before, it is good. Beverly raised the head of his hospital bed and he managed a small almost smile when he heard me speaking. He is being fed his breakfast, sipping coffee, trying to dislodge accumulated gunk inevitably gathering in his chest.The morning has begun in our house. He just spoke to David on the phone and said to him, “I will see you passing by.”

Two hours later I think he was still speaking to David in his head. He kept weeping out his name. And then Bob’s. I told him though they aren’t here he can just hold his love for them, and their love for him, in his heart. He kept chanting it over and over, “I am holding David’s love in my heart.” He is going back in time I think. As Emilia said, “I can only imagine the threads of memories he’s weaving.”

My close-by friends have arranged themselves to visit us every day- to see me and to spend time with Richard. Phyllis, Cathie, Farrell, Margaret Mary, Carey and Jac- my ‘water wings’ as Anne Lamott describes spiritual support in times of crisis. Thanks to MM for loaning me her books to read. Lamott’s self-deprecating wry humor and dance with faith written in short story form is just about all I can read and comprehend right now.

I have often complained to others how much I disliked our temporary rental home, our escape hatch once cancer became the name of our crisis when we left our home of 25 years. Parts of this house are dark and funky, the roof leaks, the heating is inadequate, the plumbing ancient and rusty- and yet- it turns out to be the perfect home for Richard’s current life. There is enough privacy for me and the aids, an extra bedroom for sleepovers, a good enough bright kitchen, and the large living room has converted into the ideal spacious bedroom for all of the activity and equipment surrounding Richard’s needs. I take back my grumbling, House, and I thank you for being exactly right for this moment. All last year I didn’t realize this was your best gift to us, just waiting to be used. Gratitude eventually encompasses all things, visible and invisble.

Rosemary, the woman who we hired with all of your generous Go Fund Me gifts last year came for a visit. As she said, “I was there for his year of living with cancer, and now these aids are here for his time of dying.” The world is mapped out in ways beyond my comprehension.

 

Through a Glass Darkly

by Judi Bachrach, February 9, 2018

King James version of the Bible, 1 Corinthians Chap 13 verse 12: “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”

This has been a ‘through a glass darkly’ kind of day. Beverly came in to get me at 4:30 this morning. Richard was in a lot of distress. His palsy was shaking him hard; he was whimpering, and crying on and off. She said this response had just started getting worse and she felt he needed something to relieve his suffering. I am so grateful he isn’t in severe pain, but this struggle was too much. I measured out the liquid morphine that hospice gave me. Richard asked for a toy while I was filling the syringe. Beverly asked him what kind of toy, and he repeated, “a toy.” Beverly slipped the liquid into his mouth and we held him and spoke to him while his body shook out the tears.

R:“My brain is a wreck,”

B&J: “Yes, and your body is fighting hard. We gave you something to give it a rest.”

R: “My body is fighting.”

We kept soothing him for another half hour. He would be quiet for a moment and then we could feel him building up to another bout of weeping/shaking. We asked him if he wanted more medicine and he said, “ Yes, rest.” So I measured out another round and this time, within a minute, Beverly and I could see his body relax and let go. The morphine helped shut down the distorted fun house mirrors reflecting crazily throughout his brain. I am so sad that he knows it is a wreck, that he has to experience these mad brain distortions.

The respite from symptoms lasted only a half hour or so and in consultation with Hospice I gave him some Ativan. He was able to eat breakfast and then he began shaking again. Also he has deep chest congestion. Cathie thumped his chest expertly yesterday but he is still pretty raspy. Kevin, the hospice nurse, came midday and he checked out Richard’s lungs and breathing. He gave him an all clear for his breathing, making suggestions to feed him less and more often to reduce the chance of aspiration if he eats too fast; to continue to turn him, sit him up, and thump his chest when we can. Otherwise he said that he thinks Richard will be around for a while though brain deterioration can create sudden havoc and therefore it is tricky to say anything more. I agree with that- Richard’s body is still very strong. It is his ‘brain {that} is a wreck’.

Filtering daytime activities through my own brain is semi successful today. I chuckle to think of my last neurologist visit in January for my MS. The doctor said to me ruefully, “Well, I guess avoiding stress may be difficult under your circumstances.” “True, that,” as Richard took to saying last year. I am stressed from lack of sleep and concern and helplessness; this darkens my lens considerably. Today I do not even know anything partly.

Rona couldn’t wake him up for lunch. Perhaps he can open the window of his eyes to peek out at our world for a little while, face to face. Elizabeth stopped by and only good friends would come with a collection of poems about death and some purple hyacinths as she did. I will share a few of those poems as we go along. Later, when Marion came to see him, he was stirred by her voice and finally woke up, eyes wide open. Rona took advantage and fed him.

Marion and I spoke for a while as he ate. She cried a bit with me at how much he had changed since she saw him in the hospital just a week ago Tuesday. When she went to say goodbye, he found the words to say to her, “ I love you, too.” She was so grateful and sad and vulnerable. Then Cathie came and held him and did another thumping Tarzan dance on his chest. We left him curled up ‘snug as a bug in a rug’. He kept repeating, “in a rug, in a rug.”

It is good to know that somewhere, we are known.

The Shepherd

by Judi Bachrach, February 10, 2018

 

My Prayer for the Shepherd in the New Year -Judi Bachrach 2015

 

May the sheep return

His dedication, compassion, and generosity

With healthy offspring

Abundant milk

Succulent meat

And entertaining personalities.

 

May the horses become

Full partners in care-taking the land

Exchanging pleasure in each other’s company

Enriched in riding and driving

Fulfilling his dreams on earth.
May the canines throughout the years

Continue their love and loyalty

In fur and flesh

Lavishing tongue and tail love

From the realm of spirit

When he is in need.
May the wife, the daughters,

The friends and clients

Reflect back to him

Even a fraction of the the artful wisdom

And steadfast work on their behalf
That he may know

Without a shadow of a doubt

He has blessed and is blessed

Loved and is loved,

As the shepherd he has become throughout His life.
Amen
I wrote that starting out a wee bit tongue in cheek- caring for twenty three Icelandic sheep will do that to you. They are distinct individuals, endearing and obnoxious in equal measure to the humans that know them. It was hardly meant to be a literary masterpeice. But when I found this piece while rooting through old documents on my computer, it seemed somehow prophetic. Richard has been a shepherd all his life. Now we are all reflecting back to him our love and blessings. I trust he is receiving them just as I prayed for him to do.

Beverly greeted me cheerily this morning saying Richard had a good night. She said, “ And look! this was amazing- three deer came this morning.” and showed me the photo on her phone. The living room beyond Richard’s bed looks out two sliding glass doors into the yard and the woods behind our house. A deer blessing. Perhaps the mammalian world responded to the above prayer. Richard was very still, and chewed a little on the ice chip Beverly gave him. Sleeping with your mouth open requires care he can no longer ask for.

When Rona came she found his breathing a bit labored because he hasn’t been able to clear his throat or even cough up any mucous overnight. She efficiently hooked him up to the oxygen enhancer and now he is being breathed. As we always are, though we suppose it is we who are doing the breathing. We unhooked all the heaters because it is warm today. He didn’t respond with swallowing when she put a swab way back in his mouth, so he hasn’t swallowed any medications.

Obviously there will be no breakfast either. I take a gulp of grief along with my lonely morning tea. What now? I am aware there is more to come. That losing him even further than he is already lost to me, will stab my heart just as sharply. My mind anticipates this. Possible scenarios arise and dissipate, these airy edifices of his death a feeble attempt to prepare, to control the inevitable.

I called hospice. I am concerned about him not taking his anti-seizure medications in particular, because the ones to help his digestion, the anti-viral, and even the morphine tablets are not as important right now. A little over two months ago I was lying next to him in bed the evening he had his last full blown tonic clonic (grande mal) seizure thinking, “ How lucky I know what this is and what to do about it (hauled him back to the middle of the bed is all) because of the number of times I sat through our daughter Marion’s seizures. ‘Lucky me’,” and I meant it. Seizures are terrifying to watch if you have never seen one before.

Him having one right now would be very hard to observe. I would be waiting for it to be over and watching to see how the post ictal phase passes to bring him back when he is already so deep inside. If he isn’t swallowing, then mashing up bitter pills in applesauce isn’t going to happen either. A hospice nurse just called me back. Turns out I can crush one of the anti seizure meds but not the other and his steroid (to reduce swelling of lesion that causes the seizures).

Rona sucked the meds up in the oral syringe with a little water and patiently squeezed them into the side of his mouth. She massaged his throat and slowly, a swallow. And again. Relief. They are in him. The hospice nurse said given the state of his disease, the sedative meds from his evening medications may just need a longer time to move out of his body? Maybe, though this new disappearance feels more like disease progression to me and Rona. Perhaps he will rouse by this evening.

Richard has been part of a men’s group for many years. It has expanded and contracted, reconfiguring as men moved on or away. Finally it has been just the three of them Dennis, Len, and Richard for quite a while (Jerem, still an honorary member whenever he is on the east coast). Len and his wife Ellen have been our close couple friends for forty years. She died suddenly and unexpetcedly in mid December. It was a devastating loss and Richard woke up one morning before her memorial confused as to whether he had died or she had. The two men came over today to have their last group with Richard. We sang to him with Len playing his ukelele. Rona and Amy were chatting and laughing in the kitchen, which is perfect. Later Farrell and Phyllis will stop by as well.

Now I will join Len in the widow/er club. He writes to me of his own grief, “…Yep, Step by Step. That’s what’s happening. And a certain amount of denial, to keep going. This isn’t really happening. With heart wrenching moments of the reality of the moment. And then on again dealing (or not) with the details of continuing to live….I’m doing okay still, wondering if there will come a time when I’m not okay. Moments of screaming and crying in the car or at moments during the day, otherwise step by step staying alive, doing chores, playing music, dealing with banks, etc.

So hard for you. So hard. Watching himself in the process of leaving you, leaving us, at least in the form we know him, breaking your heart and opening it widely to the pain and the love, while observing it and writing it.”

Emilia has decided to fly in tonight. She cannot wait. It is too hard to be away from us though she and I both know he could be in this state for days or weeks or rouse to consciousness or not.

Bob wrote to say that, “Tomorrow is our mother’s yahrzeit on the Hebrew calendar.”

According to Random House dictionary, “noun, Judaism. 1.the anniversary of the death of a parent, sibling, child, or spouse, observed by lighting a memorial lamp or candle the night before and reciting the Kaddish at the evening service of the day before and at the morning and afternoon services of the day itself.

From Elizabeth’s poetic offerings I light this candle in remembrance of Hermine Bachrach, his original shepherdess. We give ourselves to one another as mothers, as lovers, as sisters, as daughters-in-law.

In the beginning

I knew meeting could only

End in parting,

yet I ignored the coming dawn

And gave myself to you.

-Fujiwara no Teika

 

Thought-bead

by Emilia Bachrach, February 11, 2018

Following my eloquent mother’s writing, which has moved me and you all this past week (which has felt like months), is no easy task, so here is one a small, totally unedited, thought-bead of mine (Emilia’s), and many more of my mother’s (pasted below).

I remember the first time I (thought I) was in love as a teenager. Every song I heard play on the radio was clearly about me and my teenage heartache. Every combination of numbers and letters on a license-plate was a sign of how the person I was doting on felt about me. I felt so vulnerable. And here, as my father is dying, that little spec of vulnerability I felt then as a kid, and so many times in other ways at different points in my life, feels amplified beyond comprehension. Everything feels like it’s about my love for my father, my sorrow at his pain, or what I think his intermittent moans indicate is pain. Without thinking I tried calming him by singing…I sang a children’s lullaby, “this pretty planet, spinning in space, you’re a garden, a harbor, a holy place,” and “swing-lo, sweet chariot.” The latter is an early 19th-century African American spiritual, which a quick google search tells me referred to the Underground Railroad. But it’s also clearly a crossing over, passing over song. I don’t know how or why I even know the lyrics. How do we know what we know? I taught an article to my students last week, about…well, not ostensibly about my dying father, but, somehow, hidden way in this article about Indian literary genres is a poem, about a father…”sky-man in a man-hole,” it started. And there he was again, my own father, dying. Poems for living, poems for dying. All the objects of life become little touchstones of grief, nostalgia, anger, tenderness.

I am so very grateful to my father for being exactly who has been, and who he still is tonight. Still with us, but so very far away.

* ***************************************************

From Judi: Last night I didn’t sleep well. Like Richard, I am hyper aware of the transitions around me and within me. I helpfully anticipated Emilia’s arrival in the early hours by waking up around the time her plane touched down at La Guardia airport. An hour later I woke up to her imaginary car door opening and shutting in the parking area of the house. An hour after that we hugged fiercely when she actually stood backlit in the hall to my bedroom and we stepped into each others’ arms. She sat with her Papa for a while and he mmmed-mmmed on and on in a conversational tone with her. He was sharing with us the running commentary of his thoughts. First I went back to bed around 2:30, and then I heard her go upstairs to her bedroom, while Beverly continued to hold the space of love for us.

Richard did rouse in the early morning and even ate two meals today. In between those familiar rituals that we adhere to in our own lives, he utters a phrase, almost words, and murmurs and moans in obvious ongoing distress that the medications only partially soothe. His brain is so scrambled that he can’t possibly settle for long. If he is at rest one moment the sensation is pushed aside the next, over and over and over again.

It is like the race horses tearing around the track galloped headlong into a leap, sailing up over the fences and now are running amok. The crazed steeds are being ridden by aggressive cancer jockeys. They put their slight weight forward, ever forward, into the deepest recesses of the neurological brain stadium and do not stop. They can’t until their animal bodies keel over from exhaustion or the drugs finally find an available neruo-receptor to latch onto. Then Richard drops down into unknown depths where we cannot follow. It looks like sleep but is not necessarily that restful.

It cannot be a random coincidence that my ninety five year old grandmother and Richard both said as they neared the finish line, “ I want to go home.” We know that many dying people say this. The longing to go where we are always made welcome, always seen, loved, nurtured, and protected is to be Home. Richard followed that mantra by saying, “mamamamamama,” which is also our home, the womb of our evolution on earth.

Although I feel like all of my formerly tidy ideas and mythologies are currently being thrown up into the cosmos to align with unseen universes, it is clear Richard is being drawn elsewhere. I am not all clear how it is that we continue on as a separate entity of consciousness relating to earth, or that we do or do not reincarnate, or that we dissolve into a vast plenum of creative life force that arises and dissipates in the All That Is, The Light, or Love. Perhaps that is all true, though not a singular Truth.

Since I only live here at the moment, I am a student of death and I follow where my beloved Richard is leading me. I feel that my faith is purposely cleaved from my certainties and that is perhaps the only way a new faith can be born. I’ll keep you posted. I do feel he is going somewhere peacefully spacious and blessed though I do not know the True Name of the Address and my GPS doesn’t work. Google Maps are so unreliable.

 

Memories

by Judi Bachrach, February 12, 2018

Exhaustion has its purpose and I slept moderately well last night. We awake to Richard’s gentle non-stop moaning. We are keeping him on a regular schedule of Ativan and liquid morphine to prevent the escalation of his physical struggle. As of this early paragraph, he is not present, his moans not threading through the needle of words. He barely took in the the drops of morphine but eventually his throat moved in a swallow. Emilia held him for a while, she and I held each other for a while, and eventually we hear his moans subside into softer gentler tones. I whisper sweet nothings/everythings into his ear.

Grief is sharp today. Last night Emilia and I were talking about Richard’s memorial, what would we do with his clothes, (do we borrow from Potlatch or Giving Away ceremonies?) and other logistics concerned with splicing together droppings of the material world while letting his spirit fly. We cried a little, reminisced some, and acknowledged that his faults and foibles have dissolved for us in the reality of his dying; not overlooking them, but they seem automatically so unimportant now. This is how I imagine God always sees us; as Love itself with our human faults already acknowledged and forgiven.

Later Richard comes to, a little, his eyes in a slight squint, his chewing and swallowing reflexes return as the circuits fire enough to eat another breakfast. Kevin came to wave his medically sound hospice wand assurances over us- we can’t do anything wrong here in terms of gauging how he might be feeling or how often we give him his calming medications. He is resting as comfortably as he can, he knows his loved ones are here, and his shedding a single tear from time to time is biological not emotional, so don’t be upset by that. He said that Richard’s hearing is fine. Tell stories to him of your memories and it will help him to pack (or unpack) for his journey. Hearing is the first awakened sense you bring into the world and it is the last sense to leave.

So I will tell him some small memories- to enjoy them, not to mourn them. We spend our time at his side when we can, espcially when he surfaces to moan. His nervous system is too raw for much music right now, unless we sing gently to him. He is too responsive with no way to channel it.

Every Christmas for forty+ years, Richard has read aloud A Child’s Christmas in Wales. First it was at the Phoenicia Pathwork Center to the resident community there, and then after the presents, to our family with Len and Ellen. It crossed my mind that it might be his last Christmas this year, when he couldn’t figure out how to open his computer, and forgot to read a few of our favorite phrases. Dylan Thomas sets up the scene for us and then writes, “I plunge my hands in the snow and bring out whatever I can find…”. So now I plunge my hand down into forty-nine years and bring out a few memories of our earliest days together.

Remember when I played your twelve string guitar for the first time and managed a very pale imitation of Pete Seeger singing “The Bells of Rimney”?

Remember when we filled the chapel of Connecticut college in Storrs, CT, with ecstatic spontaneous music and dance with Cliff and Sara?

Remember when we slid downhill with them on the crusted snow using cardboard and a tray on that moonlit night in Bennington,VT?

Remember when you and I set up your tent by the Sawkill our first summer and it rained every day so you had to come stay in the studio with me and my mom? Awkward but sweet. Remember the raccoon that came in through the cat door and stole our chocolate chip cookies?

Memories have begun filling the airwaves, and I welcome them, cuddle them, cry and smile with them.

 

Keeping Vigil

by Judi Bachrach, February 13, 2018

Richard had a death rehearsal starting about 10:30 last night. His breathing labored within a gooey mass he can no longer expel, he spiked a 103.1 fever, his fingers and feet were turning blue- all signs of encroaching death. Beverly told me to call hospice and the nurse I spoke to by phone said all we could do were the things that Beverly already had expertly in hand. I sat next to him, whispering into his ear, Emilia lay down on the bed with him. Beverly worked calmly and persistently to help him be comfortable- exchanging cold wash cloths across his forehead and beneath his armpits, reaching into his mouth to pull out the choking strands, making him cough, hauling him to her chest with his head over her shoulder to let gravity pull the gluey mess down, down, and after an hour or so, we could tell the crisis had passed. His breathing finally slowed, his fever had broken and he is still here.

I stare at his sweet gaunt face with wonder, his breathing still raspy and rough. So far this morning, Richard remains farther away, and we tell him we are fine, that his shepherding days are over, that we are well and strong, and that he can go, that we love him and he can go. However long his body needs to let go, we are here for him. We are keeping vigil. We know your thoughts and prayers are keeping vigil with us. Thank you.

 

Saying Goodbye is Normal

by Judi Bachrach, February 13, 2018

The day unfurls slowly and quietly. Several people have come and gone to say goodbye to Richard, and to hold me and Emilia. Marion will be here tomorrow with us and we are hoping that Richard will be also. Kevin stopped by again giving us confidence that we are doing all that can be done. Aside from re-positioning him and swabbing out his mouth and throat, he said to carry on our loving, touching, our speaking, our singing gently to him. Kevin reminded us that he has seen people go for days without eating and that it is not necessary for us to be concerned about that any more, or even giving him any other medications besides the Ativan and morphine. Richard isn’t drinking because he isn’t swallowing now. No water intake is more significant in terms of timing than not eating. Swabbing his open mouth is all that can be done for moisture.

Claire’s Kitchen fills the house with fabulous smells, and Sheanka’s Salon opened her doors so that Emilia and I both have elegant buns in our hair to greet anyone who comes into our sacred space. Sheanka took delight in our elegant new ‘dos and then was crying this morning because she was so sad at Richard’s rapid descent. She said just last week she was rubbing his back, and he said, “You’re doing it wrong…but it’s helping.” She laughed through her tears. I said, “ Richard was always a a truth teller, even if it stung a little.” She took some photos of us all as she said she never wanted to forget us. This from a woman who stepped into our broken hearts from day one and cared for his body in the most intimate ways with a smile and a cheerful good morning every day.

I am in an interstitial place, another wave of unbelieving sorrow brooding but not yet broken open. I wept a little when the hospice music therapist came to sing and play the guitar for Richard. Music seeps in and resonates like a key into my heart. It surely appeared that Richard was trying to sing along with her version of Leonard Cohen’s Hallelujah, and James Taylors’ Sweet Baby James. Richard had only a very short episode of hard breathing. Emilia is diligent at wetting his mouth and salving his lips and we agreed a little more morphine was needed after that. He rested back into the deep crackling breath song that has become the latest sound of Richard to my ears.

We were a company of women earlier this evening, and while Richard sleeps, we laugh, we share his many pairs of glasses, asking who needs another pair of reading glasses and we even gave one of his hats to Sheanka, who looked adorable in it; sassy in an Indiana Jones kind of way. In this moment I find myself happy. Women have been gathering forever, chatting and cooking and laughing and crying and caring for the bodies of their dead. Richard looks so much more peaceful today and I believe he loved the music of feminine voices all around him. As Arlene said to me, we make it normal. Which dying is.

The living/dying room (as Sage named it) has become a kind of temple. It is hard to stay away now. Like a magnet gathering filings of light, we are drawn to the pulse of the oxygen enhancer as a heartbeat, feeding Richard as much time as his body needs. I lay down beside him earlier this evening and reminded him that we are saying goodbye to each other. From both sides of the Mystery, we are saying goodbye.

 

Valentines Day

by Judi Bachrach, February 14, 2018

And he is gone. It was the most peaceful ending I could possibly have wished for. He simply stopped breathing. We breathe on somehow.

 

Valentines from my Valentine

by Judi Bachrach, February 14, 2018

Beverly bathed and clothed Richard. As long as he is still here breathing, Beverly speaks to him with love and respect. “Richard you know your queen and princess are here and they will be fine. You are going to be with the angels.” Emilia grabbed a clean shirt for him. One of his horse T- shirts that said, “In the beginning…” regarding the beginning of the lineage of Morgan horses, his favorite breed. In the beginning…

Emilia and I get up. We lay with him for a long while in the early hours when his breathing shifted into the rapid gulp/gasp of his new breath song. His body is remarkably strong, I think, to live on such little oxygen for so long. I am unsure how to get dressed but I do and I am wearing a dress I wore last Thanksgiving when both Ellen and Richard were here in their full bodies. I am aware it is Valentines Day. Now they are together in the Light.

A couple of hours later, he passed without stress, a silence, an absence, several small gasps and he simply stopped breathing, Emilia and I by his sides.

Then a long quiet time, marveling at his stillness. His mouth was open though his face was relaxed. After a couple of hours, his muscles contracted, and his mouth closed into a gentle smile.

We cry on and off. We listened to the album of mine that has him speaking two of my poems. Each song speaking to the holy moments of letting him go to God in all of Her names.

His face is radiant. Like a Buddha.

Friends call hospice for me. Kevin comes, listens for a heartbeat for a long minute. Unhooks his body from the catheter. Kevin admires his peaceful face and says once again he knows how much he was loved by us. Friends call the funeral home. We have our last moments with not-Richard. They put him into a body bag and the zippers close his body away.

I am in open unfathomable shock. Grief is patiently hovering.

Emilia asked Richard to write down something for himself, to himself, before she went back to Cleveland when she left him in the hospital a month ago. She said he thought for a long time and this is what he told her to write down:

“Adoration for my Beloved, I am always with you. I will always be with you. Forever. Thank you so much my darling. I’m here with you forever.”

Happy Valentines Day, my dearest Richard. It is a good day to die, my warrior, my lover, my priest, my magician, my husband. Fare thee well.
The Day After

by Judi Bachrach, February 15, 2018

I am trying out my new life. Last night I thought about calling to cancel my physical therapy session for today. In my mind I said “because my husband died.” I actually couldn’t quite get those words out when I left a message on their office phone this morning. It made me think of the first time I said to a guy trying to flirt with me, “my husband is in the car.” This was at a gas station in Maine on our way to our camping honeymoon in Baxter State Park. Now I will have to get used to saying I am a widow. Me? A widow. Yes. I am.

Our lives tumble along doing the things that need doing; cleaning up, telling stories, laughing or crying as memories surface, waiting for the hospital bed, commode, wheelchair, walker and oxygen to be taken away. Welcoming concerned friends, gathering soup and flowers as they arrive. David came for a while today which was perfect timing to help us all integrate the strange empty day after this most major life event.

Our living room is for the living again, not the dying. It still feels like a sacred place. I had thought I might need to smudge it with sage or something, but it is clean, open, holy, because the resonant field of ‘something sacred happened here’ has not yet dissipated. Time is irrelevant. Emilia and I cannot believe that Richard died just yesterday. It is also the end of eighteen long months of Richard dealing with cancer. The whole story is still waiting for me to tell.

I will not close this site for another week or so though I will not be entering journals regularly. I can see that some people have just discovered this place to learn of Richard. Once every thing is settled, I will be able to include the details of Richard’s memorial service here.

I repeat again how grateful I am for this opportunity to share Richard’s final bridge crossing. Printing out all of what you and I have written to one another will be a touchstone of loving memory for my family to have for years to come. I am seriously considering writing another book other than the one on living with chronic disease that I have been cooking for a long time. I have a feeling I held off completing it these many years because it wasn’t the book I really needed to write.

Here are some house cleaning memos:

Richard’s memorial. As of now it will likely be in mid April in Kingston or Woodstock. Emilia will also post the final time, date, and location on Facebook. We hope those of you who wish to attend will help spread the word.

People have been asking what can they do. We wanted to tell you some of Richard’s causes that he was passionate about. If you are so moved, we offer these charities to donate to in his name. He cared about many many organizations and followed them all. But here are some that we put at the top of his list. You could also choose your own. I bet he would agree with your decision.

https://www.charitywater.org/donate/

A cause Richard tapped into two months before he died that had him in tears when he watched a potent documentary on the topic of the capitalization of water resources in indigenous communities.

https://www.heifer.org/gift-catalog/animals-nutrition/index.html?mource=KIK3M16BP0002

“is a charity organization working to end hunger and poverty around the world by providing livestock and training to struggling communities.”

7

http://www.seva.org/site/PageServer?pagename=donate/ways

“Transforming lives by restoring sight.” Partners in Health: https://donate.pih.org/page/contribute/donate

“we go. we make house calls. we build health systems. we stay.” Check out their work in Haiti. Wonderful organization.

All for now, Judi

Memorial

by Judi Bachrach, February 16, 2018

I have been very occupied with Emilia and her husband Zoran being here, still amazed at the quiet spacious feeling in the house, people dropping in, selling our old second car, and generally watching life go on.

Richard’s body was cremated today and we and some friends meditated just before the appointed hour. We all felt he had moved on and was up and out…..

I will write more tomorrow.

The Memorial will be held on April 14th at the Bearsville Theater in Woodstock from 12:00-3:00pm. You are all invited- it is a pretty large venue, and we welcome everyone.

More tomorrow.

Bumping Along

by Judi Bachrach, February 17, 2018

Richard was home from the hospital for twelve days before he died. My mother gave birth to me eleven days after my father died from injuries suffered in a severe car crash. My older brothers were three and five. I am even more struck by this scenario now that I, too, have just lost my husband. I entered the world through the storm of her loss. I can better understand her asking the birthing nurse, “ Is it dead yet?” meaning me. Her emotionally driven life left her ill prepared to handle much of what life threw at her, including coping with the birth of a child while having two little boys at home.

As a new member of the Widow/Widowers Club, I am looking at the handbook rules and find it remarkably simple and tough. As my friend Natalie who has been there says, remember three things:

1. Feel the pain, then let it go 1. Keep busy 2. Reach out

Feel the pain: The excellent hospice social worker on my team helped me to uncover a tightly wound cord of witholding from my grief. The fear there was,“If I let go, I will become my mother’s all-encompassing grief.” Once identified, he helped me breathe into it and let it go. If I’m not afraid of becoming like my mother, of living my life through the lens of her issues, I am free to open to my own sorrow and my own healing. I await deepening into my own grief- mostly it is hovering, peeking through in sharp pangs when triggered, as Emilia, Zoran (her husband), Marion, friends or Richard’s family stir up a memory.

Keep busy: I am busy so far. Having my daughters and Zoran here is good. Working out the details of the memorial is good focus. Having dinner with Richard’s cousin and her family last night was good. Writing Richard’s obituary for the local paper is good.

Reach out: Reaching out means to continue writing on this site for a while longer. My friends and family are respectful of my naturally introverted nature but also my tendency to withdraw. That defense has been given a huge work out and I find myself saying ‘yes’ and ‘please come’, and ‘thank you’ more and more as I am softening into this new reality. Cathie has been gifting me a massage every day, something I definitely reach out for. I know, right? Very, very good.

Emilia slipped Richard’s wedding ring off of his finger before the funeral home people arrived. I have been wearing it on the middle finger of my left hand ever since. It is a bit wider and heavier than mine and they bump into each other companionably, reminding me of his masculinity and our long marriage.

 

Richard’s Eyes

by Judi Bachrach, February 18, 2018

Emilia and I and our friends have been working on the memorial. As we searched for the right picture of Richard for the program, I realized I wanted one of him for myself that was not necessarily laughing or even smiling but had him gazing straight at the camera so that I could look into his eyes. We found the perfect laughing one taken by my friend Sara for the memorial and obituary to put in the local paper. When the program for the memorial is done we will post it.

Then we found a picture that was taken by my friend Daphne when we visited her and her husband in the French Alps some years back. One day Daphne, Richard and I went to Mt. Blanc, the lofty old man overlooking the entire region. She took a photo of Richard there that was just what I was looking for.

He is neither grinning nor sober, just engaged and open, with his penetrating eyes staring straight at the camera. This is the one I need so that I can still talk to him. In this picture he is vibrantly alive, on our last trip abroad hosted by Daphne and Hans who himself died of cancer in the following months. It brought me to my knees and became a focal point for my ongoing discussions with Richard. I had Zoran and Emilia put it on my laptop so that I can look at him whenever I need to talk things over.

That done, I now have a focal place to allow my grief to emerge. Emilia and Zoran have gone back to Cleveland, Marion to her own apartment, and I am alone. I have spent many, many nights alone here in this rental, when Richard was gone so often for his chemotherapy infusions in Manhattan. I am not still consciously waiting for him to return, but I am used to holding space here for my sick man; a process that went on for 16 long months. It is a familiar quiet house yet totally different to know that the sacred shone all around his dying process right there in the living room. I have time to process that he is totally gone from anywhere I can physically touch or see ever again.

His ashes have not yet come back from the crematorium to the local funeral home, though they do have the death certificates. There is a lot of legal and financial paperwork to do now. Richard was clear that he did not want to have his ashes buried or scattered in a particular place but wanted his loved ones to take what they wished to scatter or keep wherever they needed to.

People keep sharing their dreams, visions, meditations, and experiences of Richard with me. Many folks ‘knew’ he left on Valentines Day before it was announced. A few people told me that they had major insights about their personal issues as they contemplated his dying; that his face appeared to them in the stones of a fireplace, in the hand of a Buddha statue, in the night, and in the daylight.

I get the distinct feeling that we are all much larger than we know- that we keep ourselves small because it is hard to bear living in the Light. Richard’s love is still rippling around us, around me, and though I told him I am so sad that he is gone, I am also so happy that he can spread his unique radiance wherever it is called for.

Please understand that I know very well he is not, and was not ever, a saint. But he was a love and is a light, just like the rest of us if we can open enough to let ourselves shine. I celebrate his humanness and simultaneously his release into a freedom I can only imagine. I miss him so very much.

Times Two

by Judi Bachrach, February 20, 2018

Time is not a reliable container for me right now. It seems impossible to comprehend that a week ago, Richard was still alive. He was leaving, but still here, inspiring air as best he could. A week of ordinary life marked by extraordinary life renders the whole passage of time moot. The importance of every final day, every final moment, every final word, every final breath supersedes clocks and calendars. Emilia was saying to me that she tries to imagine two weeks from his passing, a month, or a whole year after his death. What will those time markers mean to us then?

I am unable to visualize this. I have been working with the concept of two kinds of time for a while. Chronos, the Greek god of time, gives us the root word for chronology, linear calendar time, the one we all set our watches by. His grandson was Kairos, who represents time as in ‘the right time for something to occur.’ In the Bible it is used to mean “God’s appointed time,”. To me it is the time of being in the moment, the now, in which everything unfolds exactly as it should.

Participating closely with my dying husband had me living in Kairos time. I wanted to be present to every moment that I could bear, knowing the ending was near. Chronos time went right on ticking, but my sleeping and waking, my sitting and listening, my eating and talking, touching and singing, was all geared around his imminent departure to infinity. Kairos took me by my hand. He offered Grace which can only arrive in a moment of Now. If I wasn’t paying attention, the potential opportunities would have passed me by.

I am aiming my arrow towards a healthy blend of the two. I love this fact- that the word ‘sin’ that is used in the Bible, actually was translated from the original Aramaic where the word meant ‘missing the mark.’ We aim for something and miss the target. We mess up, we err, we are human. If that is sin, then I am a very big sinner. I miss the point, show up late or not all, override common sense, lash out, withhold, and am not available for any kind of Grace should it show up- I am too busy feeling guilty and anxious. I look at my watch or the date on my calendar and realize I might have messed up again.

Kairos lived here for twelve days. Everyone who walked through our door was caught in the slipstream of No Time. We all felt the lush spacious emptiness of Death hovering. It was Love. It was ripe. It was precious.

Chronos brings me back to ordinary life. Once you have death certificates in hand, you begin the death rituals of American paperwork- for Social Security, the lawyer, life insurance, our banks, the….lots of papers to get right with the new order. Kairos beckons to me, and I reach into my quiver for new arrows. I inhale, hold my breath, aim and release breath and arrow toward the center of grandfather and grandson, embraced within their duality.

 

Winter Garden

by Judi Bachrach, February 21, 2018

A week. One week. Seems impossible. One week after 49 1⁄2 years of living together. Today I believe in Einstein’s concept of simultaneous past/present/future time. My friend Marc Stecker, author of the MS blog, http://www.wheelcairkamikaze.com reminded me of that concept yesterday, in his condolences. Mystics agree. In some ways our life is all happening now. I am living long memories of our very full life as husband and wife, living the recent 16 months of Richard’s illness, living the loss, living the now of Richard no longer physically present in my life, but psychically and emotionally never far, and then away into the unknown future… it is all a mix and each chapter blends into the next. In the beginning…

I am wary of my life becoming static. My tendency to withdraw invites the dynamic mix to settle like concrete. Looking for false stability is useless right now. I want to remain as open as possible. I have no need to set garden posts in concrete for high fencing to keep the deer out. No need for hardware cloth low down to keep the rabbits out. No need to keep anyone out of my winter garden.

What lies beneath the mud of this strangely warm February day is thinking about an early uprising. Those unsuspecting shoots will be discouraged by tonight’s cool temperatures and remain quiescent after all. The earth takes nothing for granted; everything is adapting, reorganizing, responding, and resilient. I would like to consciously maintain a new level of resilience, of openness, along with her, no matter the changing climate.

Claire took my Swedish made outdoor walker out of hibernation for me today. It is called a Veloped and is engineered to wheel smoothly over rocks and roots up to six inches high. When Richard bought it for me, the idea was to allow me to walk in the woods on my own when we still owned our property on Cricket Ridge Road. The first time I used it was one spring day when Katya, our oldest ewe, had just lambed her two (morrit) brown offspring. I wheeled down the hill to their paddock and Richard guarded me from the exuberant shoving of the rest of the flock so I could commune with the babies.

After that week, it seems I declined physically and couldn’t use the Veloped as much as I anticipated. But now I am rededicating myself to becoming as strong as I can within the limitations of my MS. Since Richard’s diagnosis I haven’t been on top of my own health regimens. It is time to focus attention on my body that has carried me through so much- more than I ever imagined it could do.

Claire walked with me all the way down and back up the driveway on this summerish day. It was a small triumph.

Later she brought out her harmonium and we chanted for a while. In the ensuing sweet silence, across the highway from my house, I could hear the Sawkill river rushing with snow melt. Past present future seems swept along, tumbling through the valley on its way to the sea.

 

Grief Train

by Judi Bachrach, February 22, 2018
Emilia texted me first thing this morning and asked how I was. I replied, sad, sad, sad. And I am.

Richard’s ashes and death certificates arrived a little later: The physical remains of all that is left of the vital man I knew. Claire held me until I could absorb the reality of the weighted box.

I wrote the following piece the week before Richard returned home from the hospital for the last time.
The Grief Train

I wasn’t aware it had arrived for me

waiting at the station of my front door

until I could bear to go

from brushing my teeth to wailing

zero to sixty thousand decibels

in a single bounded heartbeat.

I saw his soap

or his cough drops

or his shirt

his sauerkraut in the fridge

remembered his smile his jokes

his wellspring of love for me

 

The train drops me off

gasping bundling away the Kleenex

I carry on without a vehicle

no tracks, no map

as if my life is the most important thing to do today

Knowing it matters,

but not so much

I carefully tend my small engine of the universal train.

 

Grief is the cargo

the passenger

the conductor and

I am holding

all the joy and sorrow of the world

bring forward my eternal half life

living until it is my turn

to willingly get on board

to pass through the tunnel on into the light.

 

Grief is a short word used to encapsulate the world of loss. I never knew how visceral it was before. I have held my broken heart in my hands over the years, but it always seemed to fit back into place when the worst of the suffering was over. This time, I am not sure how it will ever come back together. Grief weighs my whole body down. It is like moving through mud to get to where I need to go. The tax prep, the shopping lists, the scheduling, selling Richard’s truck, it all seems like some kind of trick to keep me here.Where else would I be?

I am wandering around in a parody of Richard on the morning of Emilia’s birth. I told him my waters had broken in the wee hours and he mumbled in his sleep, “No they didn’t”, and tried to turn away. I insisted that actually they had, and we waited for the contractions to come on stronger which they obligingly did. Finally he got up and I watched my hyper organized man wander from one side of the bedroom to the other gathering up the few last minute items he needed to bring to the hospital with him. It was funny to watch except when I writhed in the grip of another contraction. Now it is grief that is being born, and I haven’t a clue of what to pack or where to find it. I suspect there is nothing, but I try to find something, anything, as a talisman of faith to bear the loss.

This grief is very personal. It is my partner I am losing. My husband, the father of my children and- all of that. Grief is also universal- this is how my mother felt while carrying me when my father died in a car accident 11 days before I was born. This is how my close friends felt when they lost their partners- I am so sorry, my dear friends: I had no idea what it was really like for you. I wish I had been more available to you all, as you are now for me. It is what millions of men and women and children feel every day around the world as they lose their beloveds to the catastrophes of war, of illness, of accidents, old age, school shootings- the myriad ways we lose them at every turn of the earth.

Grief is so soft and so violent. It is cloying and a ghost, roaring and silent in equal measure. It is fueled by my outrage, disbelief, fear, selfishness, generosity, curiosity, awe and the gentle rain of tears. It is all about me, then all about Richard, about our families, about all human beings, about faith and the dissolution of faith. I am broken and made whole. I am lost and then centered in the moment where nothing else matters but now. This level of grief is becoming a new friend, though we have a ways to go before I am letting her behind my best defenses. It is a matter of time before she matures permanently under my skin or in my heart or anywhere else she chooses to abide.

 

February 23, 2018

ALCHEMY

by Judi Bachrach

17 years ago I wrote this Valentine’s Day poem for Richard.

 

2/14/01 Richard

The words I write are too small

For the love I feel for you.

My thoughts are too fleeting For the depth of how you live in me

My heart is too constricted for the

For the vast quantities of Love-Blood that opens me

To who you are.

Words and deeds the only light I have to reflect back to you

Fall short of

Unending commitment to discovering you.

Unspoken, wings carry aloft this earthbound version

Of loving you.

Oh my souls breath I love you.

 

Those words are still way too small. Now they are tiny echoes across the cosmos, across unknown states we cannot truly envision. But they are still true for the me that is here. My friend Daphne just wrote about grieving her friend Richard, taking it upon herself to let the network of Pathworkers in Holland know that he has passed. She speaks of living after her own husband departed:

“My life has changed so much the last two years. I have come home to myself and my little lovely home is perfect. I have become a joyous and grateful person. So much friendships in my life and so much reciprocity. And I miss my dear one everyday. Also I am proud of myself for having survived so much, being in such deep waters and valleys and now floating in the present, every moment allow what wants to happen. Living light, feeling light and radiating light.”

She and all of my widowed friends are such an inspiration to me. At the news of each of their partner’s death over the years, I have tried to imagine “What if I was the one who had lost Richard?” I couldn’t imagine it then and I almost cannot now. Except this is true. It is my reality. I am allowing love and loss to deepen inside of me, mingling in alchemical mystery. I am lead, I am gold.

Tonight I go to Shabbat services at the local temple- the Rabbi is a lovely man who regularly plays guitar for his services. He is someone I interviewed years ago for my Interfaith Seminary course. When we concluded the interview he joked, “Next time, I want to interview you.”

Richard’s name will be offered, among others, for prayer. Cathie, the woman who has supported me and Richard enormously ever since it became clear there was an urgent situation unfolding in her midst, will also be playing and leading a song that may serve well for Richard’s memorial. MM is taking me. This evening is bringing me out into the world on my dear one’s behalf. I am grateful. A vessel for distillation, a philosopher’s stone.

And it was. I am home from the service. It was small gathering and I loved that the Rabbi knew me and that I had lost Richard. He sang a song I had never heard that Pete Seeger wrote for his own funeral. The whole service opened me up to understanding the necessity of sharing Richard’s death with a larger community, why writing here has been crucial for me. I saw how he is clearly not mine alone to miss even though my pain is so keen as his wife; how the loss of one of us is a loss for all of us. I now welcome the memorial even more as an essential experience; that it will further help me to release Richard through a larger community. The alchemy of Love in any language is balm for my soul, turns pain into pleasure, lead into gold.

 

Graduate School

by Judi Bachrach, February 25, 2018
Words and Ashes

2/25/18

There are no simple words.

Perhaps no words

No words to speak

What has been lost

Rendered into ashes

Those words we know so well

Ashes to ashes

What do they mean now

A box on the shelf

Where once your cello stood

Where do you want to them to go?

“Nowhere

Ashes are for the living To do with them as they will.”

What do I will?

I am the living

What. Do. I. Will.

I am living

Your gift to me

Remember

We all die

Ashes to ashes

So Live

 

Discovering the Bone House.

1990’s

I feel it in my bones

I know it in my bones

Sticks and stones may break my bones

But God can never hurt me.

This is the house that bones built.

I live here around the bones

God lives in the bones.

Bonespeak is the purest speak I know.

I am dancing bones

Rattling, clattering, jangling bones.

I am a bonehead

Take me to the bone house now.

I’ll meet you there eventually.
As we all have over the course of our lives, I have contemplated death before. Death is always with us, though we choose to deny this fiercely in our daily lives, as if denial is the best way to live. Humans are born and die and thus it has always been. There is this built in duality to yearn for the inifinite I call variously God in all of Her manifestations and the near impossible task of living earthbound until the final departure. I want to live here in the unconditional Love I know is there. We create paths, as many paths as there are humans, to bridge the gap. I realized the other day that I write to bridge the gap. There are moments when my words feel clear and I want to live that uncluttered feeling in all that I do. Being human I do not live there, only visit. Right now, writing is my bus ticket.

Richard and I always thought I would leave first given that my body already appeared to be disappearing one bit at a time. Now it seems his leaving me has made clear that I have strength beyond my bodily limitations. I was in a kind of sticky cocoon of ‘lack of mobility equals lack of life engagement’. After so many years, I have emerged if not with wings, with words to fly and I am not going back inside that chrysalis even if I could. I have had MS as long as I have known Richard. Moving on without him, means moving on with MS in a brand new environment. Stress is to be avoided with my autoimmune condition- that wasn’t my life for the last 16 months and yet here I am, MS and all.

My sorrow waxes and wanes, laughter arises and sifts down around me like one of my departed friend Ellen’s shawls. I am bereft and now, having been loved so well by Richard, I have been prepared to being loved in ways I have still to discover. An old friend crossed miles and memories and gave me a massage today. I cried as I felt her love and how I had missed her. Like a well tutored student, I have graduated to experience out in the world all that was studied in the private classroom of Richard and Judi.

 

BRAINS

by Judi Bachrach, February 26, 2018

First let me reiterate as people have been asking- when you see the invitation on this site to make a donation- this is to support Caring Bridge in general and has nothing to do with supporting my journal or my family in particular. *******

When Richard was first diagnosed with cancer, it was finally due to observing his breakdown of executive function. When he couldn’t use his phone or understand the passage of time, there was something obviously wrong with his brain. The earlier signs of encroaching disease were less obvious and only by carefully looking back did I see what looked to me like a year of burgeoning depression. He began to seem less enthusiastic about experiences that formerly brought him pleasure.

“Why don’t you take Lucas out for a ride? It’s a beautiful day for it and it has been a while.”

“ Yeah, I should. Poor horse hasn’t been ridden for too long.” Big sigh. “But not today…” and a burdened sense of overwhelming responsibility ended the discussion.

This was not a normal Richard response and he he spoke in a blank tone. Also not Richard. The night Emilia and I were waiting for Richard to go into brain surgery on November 8th 2016, I wrote the following:

“He couldn’t experience any feelings about what was happening to him. His ordinarily deeply engaged, hyper aware, intelligent and expressive self was devoid of self referential capacity. When I asked him what he felt about what was happening to him, he said, “I don’t know,” in a flat childish voice. Like a bad sitcom I felt like saying, “Who are you and what have you done with my husband?”

We were told that the largest tumor they were going in to biopsy (in fact, we later found the surgeon had removed it) was pressing on his executive function and his sense of self. I had the opportunity to see Richard without this part of his brain. After the surgery he was still quite altered. With no sense of self he was simply Love. He was weeping with sweet gratitude towards everyone interacting with him. Another friend of ours also exhibited like this after her car accident and subsequent brain injury. Without an identified self using normal social inhibitions, they radiated unfiltered love.

When our daughter Marion had one of her (grande mal) tonic clonic seizures as a child, the aftermath or post ictal phase was often marked by tears running down her cheeks from a headache. All the while she was beaming smiles and love out of her little face. Sometimes I felt like it was too much love to bear, that I wasn’t open enough as a heartbroken mother to take in the huge radiance of energy she beamed our way as she realized these concerned faces bending over was because she had another seizure. Wherever she went while her brain was suffering another electrical storm, she emanated Love on her return.

Plenty of TBIs result in other sorts of behaviors depending on the location of the injury- rage, swearing, violence- any sort of aberrant demeanor without capacity to redirect or contain the result. Richard also had a few weeks of intense irritability after his stem cell ‘consolidation’ chemotherapy. It seemed to be a kind of chemically induced PTSD. The slightest engine noise, a raised voice because I was trying to make sure he heard me in the kitchen, too many phone calls in a row, the inconsiderate driver; any of these would snap him into a momentary rage. None of this was entirely unknown Richardness to me, but it was a concentrated caricature of the old Richard. And it was non-negotiable- he wasn’t able to process what happened or why. His usual rational thought process did not apply. His sense of self was back, though my perception of him was that he was altered due to the cancer, the chemotherapy and resulting brain damage.

Seeing that the essence of a human being temporarily stripped of identity is reduced to Love- who are we really? What is the result of brain wiring and what is it that we call our personality in all of its complex layering? Without knowledge of neuro science to back it up, I have been saying to my clients for years, “That your husband’s behavior is due to his brain wiring and it isn’t that he doesn’t love you.” It seemed so clear to me that my own quirks and deficits were a result of how my brain was organized (disorganized) and that my personality began to develop defenses around the all the ways those deficits impacted the world around me.

It had to be true of others as well. Not that we absolve ourselves of responsibility for the unintentional wounds we cause as a result of that brain wiring, because we can and do make changes with self awareness and positive intentions. But do the underlying issues disappear? Not so much. As others have said, “what you see is what you get.” This is not cause for despair of never becoming more like the human being we think we would rather be. Not at all.

That work is what moves us to find more kindness, more patience, more love in our interactions with those around us. Especially those we are intimate with and who we tend to take for granted. Their annoying brain tics seem unbearable at times, and for that we work to forgive them and ourselves over and over. Such is the complex tapestry of everyday love. Creating spaciousness to think before we react, is one of the perks of a meditation practice for me. A breath, a pause, a realignment of intent has time to be birthed before I lash out with an automatic snarl.

All of it seems to me an overlay covering the essence, that fundamental Love that is revealed when the curtain of personality is lifted. Behind the social mask we use to navigate our world, is the brain wizard in the land of OZ. Behind that is the Animation that infilled Richard, that had so clearly departed when he stopped breathing. It has everything to do with what I call Love.

My friend Kim sent me the link to this article, titled The Empty Brain, by Robert Epstein, a research psychologist and author, and a member of the American Institute for Behavioral Research and Technology.

https://aeon.co/essays/your-brain-does-not-process-information-and-it-is-not-a-computer

here is a brief excerpt:

“To understand even the basics of how the brain maintains the human intellect, we might need to know not just the current state of all 86 billion neurons and their 100 trillion interconnections, not just the varying strengths with which they are connected, and not just the states of more than 1,000 proteins that exist at each connection point, but how the moment-to-moment activity of the brain contributes to the integrity of the system. Add to this the uniqueness of each brain, brought about in part because of the uniqueness of each person’s life history….”

The point being that we have no idea of how the brain actually works and or even how memories occur. Despite years of research, no memory has never been found in the brain. It does not exist. To date, the use of computers as a paradigm for explaining the brain is a failing and insufficient model. Who are we? What are we if it is our brain that dictates our behaviors? How do we hold this limited human understanding of neuro science up to our faith in spirit, the Divine, the powerful innate desire to bridge the gap? I am not asking in order to know the facts, but to continue to do my work, to keep breathing and opening to the Love that Richard was, that I am, that we all are. I wish he were here to discuss this with me.

 

JUST SIT THERE RIGHT NOW

by Judi Bachrach, February 27, 2018

 

JUST SIT THERE RIGHT NOW
Just sit there right now

Don’t do a thing.

Just rest.

For your separation from God

Is the hardest work in the world.

Let me bring you trays of food

And something That you like to drink.

You can use my words

As a cushion

For your head.

Hafiz

 

My friend Tim sent this poem to me this morning. Just after I finished chanting Kirtan with Claire, I came in and opened his perfect gift of timing on my computer. Claire taught me a new chant that had a minor chord progression for praising God. The deeper I sank into the plaintive melancholy of the music, the sweeter and happier I felt. If Krishna is in fact, the blue guy with the flute, I ‘saw’ him as the image fixed in my mind from a poster Richard and I bought of him in 1968. The more mournful my vocals became, the more Krishna cheerfully danced around me and Claire.

That poster was one of the first items we purchased together. We were in the middle of the Peace/Love movement, we took a 101 History of India class, and South Asian paraphernalia was all around us. That poster came with us everywhere for a long time though I have no idea where it may now reside.

God in all of Her forms dispels the duality of sad/happy. Deepening into God’s Love, whatever rituals I use- Shabbat service or chanting to Krishna or a walk outdoors- can bring me to the momentary union I sing for, that I write for. I can use Hafiz’s cushion when I sit and wonder at the way my life is unfolding. Moving through grief brings me closer to union, reaching out and taking in friendship brings me closer, engaging with the world brings me closer, and lying quietly in the dark of the night can as well.

I choose to be more aware of how much I gravitate towards separation. Habitual patterning repeats itself endlessly. My Continuum teacher, Emilie Conrad used to say, “The brain is a pattern addict.” It needs to be, evolutionarily speaking. If the fire is hot to our hand as we reach in for a piece of meat, next time, we remember to avoid the flames. If Ogh was eaten by the last Saber tooth tiger we saw, then we know we should avoid that beast the next time. Yay brain!

That primitive brain patterning is still with us and is still necessary. Some patterns were smart for us to choose when we were little. The ways we learned to be safe and survive in our family of origin, literally saved our lives. The problem is that as we move away outwardly from that origin, we bring those internal patterns along with us. Those may be so ingrained that it is hard to understand why we seem to recreate similar issues for ourselves over and over again. Becoming aware of the patterning takes work.

If God is Unconditional Love, Omniscient, All- then even the slightest thought limitation my brain entertains is a separation from the Divine. Our brains are very well trained to separate- “This is good. This is bad. This is right. This is wrong. This is me. This is not me. This is life. This is death.” Duality.

I choose to use my broken heart to keep from closing up prematurely. I choose to see my old patterns that are desperately trying to reassemble, as shards that will not mend, nor do I need them to. I choose to use this time of being torn open to move towards less limitation, less mindless patterning. I choose to let this enormous loss bring me to Hafiz’s cushion and rest as much as possible in the arms of union, where loss and completion are one and the same.

Throwing Away of the Nutcracker

by Judi Bachrach, February 28, 2018

My future life began today when I asked Claire to clear off the mantle of the fireplace to display the many wonderful condolence cards and photos of Richard that people have sent to me. Thanks to all of you who did so. I can attest to the fact that the fine art of handwritten cards is not gone forever.

There were still a few Christmas decorations lingering on the mantle from our small holiday gathering this year; things I had grabbed last December when we made our emergency landing here. One item was a grim faced wooden soldier as the Nutcracker with a scraggly white beard. My grandfather was a loudly proclaimed atheist, and he enjoyed the cynical edge of this character standing among the festivities he had no use for. Another was a cute Christmas basket that had arrived years ago with cheese and crackers. I had Claire take them both to the garbage area.

I lost my house and my home as well as Richard over the last 16 months. I will not have another home for family gatherings. It is not in reality for me anymore. Emilia and Zoran will now hold the honors for any traditions we will invent together in our newly configured family. I will be there with joy, but not as the hostess. So out go Christmas memorabilia from past celebrations unless useful as an anchor for the future. Perhaps I only will keep a few things that are very small and perfect for me in whatever room or studio apartment it is I end up in by myself.

The Throwing Away of the Nutcracker was symbolic. I never really liked him as a child, but he was dutifully packed away along with the 1950 vintage porcelain faced Christmas angels of my grandmothers’. My grandfather (step grandfather, technically) and my grandmother were a study in contrasts- he was not a warn fuzzy family man and it was my grandmother who held our family together as best she could after my father died. I needed a hug after the decision to oust Mr. Nutcracker but it is good. Small markers of a future without Richard.

This is not really all that sad. I am also looking forward to a new life without the responsibilities I always loved but can no longer sustain. When decorating or cooking for Christmas, Hanukah, Easter or Passover or any other festivity becomes mostly a burden, it defeats the purpose of sharing pleasure with friends and family. The objects that held some of those memories can be lovingly dispersed with no harm done to past experiences.

May is my final month in this house. Ahead of me and Emilia and Marion, still lies the task of unpacking belongings that have been in storage from the Bearsvile house and discerning what small amounts I want for myself alone. I am leaving most of them behind me. Much of what I saved was for the future home Richard and I will never share. While he was in the hospital, I was going through our books trying to save the ones most important to Richard. I no longer wish to have a library of hard copy books that are mine alone- I do not need a kitchen full of cool utensils and dish sets- I do not need furniture for a whole house- I do not need to carry along much of our past physical lives from the 25 years from our homestead in the country.

I know the sorting process will trigger a lot of nostalgic memories and tears. But it will also be a relief to divest myself of ‘too much’ and holds the creative emptiness necessary for creating my solo future.