Grateful

Diary 10/8/19

This is a few minutes of a dance piece that a senior dance student from Oberlin and I performed for this past April ‘s Kendal community event, Spring Fling.

I look sorrowful and full of longing in most of it, but end with a grin as butterflies surround us. The end of the actual longer piece indeed had gorgeous butterflies flitting thickly through the air from a clip of a copyrighted film from another photographer which cannot be shown here. You just have to imagine them glowing in all their ephemeral beauty.

It is a sharp reminder to see myself as I was then to compare with how much harder it is for me to sit and move now. Then I was still in recovery from my laminoplasty three months earlier. The symbolism of me emerging from a cocoon was not lost on my audience. Perhaps there will be another emergence of wings after my next surgery. We shall see.

Here are the words of a song I wrote last month. The words were originally written for a poetry class last fall, but the melody driving the original lyrics was not what I wanted so I put the poem away. Watching the Ken Burns series on Country Music a few weeks ago, suddenly inspired a  tune to carry them, which I am sure came from a compilation of any of the hundreds of songs mentioned or featured in his movie. The poem took on a waltz rhythm; rewriting the lyrics as they wedded to the melody. I am so grateful that creativity has a means to be shared at Kendal. I got to sing this song at our bi-monthy gathering called Song Swap, led by a professional folk songstress that resides here with her musical audio-visual technician husband.

Two Sides of the Same Coin

                                                By Judi Bachrach

1)When I was younger, I fed the hunger

to become Somebody that the world could see.

Now I am older, I am much bolder

And daring and caring to simply be me.

Chorus:

Two sides of the same coin

laughing and crying and living and dying

the rainbow of aging is always engaging

with who we really are.

2) Loved ones are leaving, teaching me grieving

my broken heart I am learning to bear.

When I open to sorrow, I open tomorrow

an opening heart has much more love to share.

Chorus:

3) Times I still wander, times I still squander

this gift I am given of being alive.

Time is unending, I am befriending

A body that’s old with a spirit that thrives.

Chorus:

Advertisements

The Baton

10/2/19

I am looking forward to the day when I no longer need to include my medical status to you, my friends and readers. Short and sweet- with my last MRI in hand, my second opinion surgeon immediately said that yes, surgery would relieve most of my pain. I was surprised and delighted to hear this. He can do MIS, minimally invasive surgery, with two small cuts on either side of my spine at the level of L4-5. He will fuse those vertebrae, likely with a metal cage. He warned me as he must, that it could fail, and that above and below the fusion other vertebrae would eventually be more challenged. But he also said I will be up and walking the next day as well as I do now without pain. It will not help the weakness I experience, and it will still take 3-6 months to heal from the surgery itself. Though it is no longer prominent at eight months out, I am still healing from the last surgery on my neck, which was far more invasive. The biggest question is of course: when? A certain baby boy is due around 12/20 and I want to be ready. The doctor already told me he is booked into November and I won’t see him again to schedule everything until the middle of October.

More surrender is involved and so is trusting that somehow it will all work out for the best for everybody concerned. May it be so, whatever the dates on the calendar tell us!

I have been pondering two wonderful quotes that came my way from friends. One is from the poet Hafiz, a Persian poet, who lived from 1310-1390. It says: “Love is simply creation’s greatest joy.”

I love this definition to recall any time my life gets complicated. It is that direct and that simple. It is a surefire antidote to confusion and unnecessary drama.

The other is one from the Dalai Lama, applicable to today and tomorrow as the days fly by tortured by politics. “The planet doesn’t need more successful people. The planet needs more peacemakers, restorers, healers, storytellers, and lovers of all kinds.”

I am confident that therein lies our hope as my grandson enters onto the world stage with millions of other new, young people ready to take the baton, running past us into the future we fervently hope they will save.

Peace

Diary 9/19/19

This year, my birthday falls on the International Day of Peace. What a wonderful concept, and a marvelous stretch for humanity to reach for. May we arrive there one day. I had a deep conversation with my friend about her becoming a member of the Quakers during WW11. As you can imagine, the war was a hot topic for a spiritual community that espouses peace and favored Conscientious Objectors. Is there a right time to take up arms to combat evil? It is a good question to ask again and again. My friend fell on the side of supporting the war effort and was admitted to Quaker membership in spite of that exact split in her particular meeting. The Quakers here in the Oberlin meeting have a very large, honest umbrella which makes for a very diverse and interesting community. Peace is still a mutual front and center concern. In our last gathering, someone sang the song I learned in Girl Scouts many years ago, “Peace, I ask of thee oh river, peace, peace, peace…” Many of us sang along remembering the words as we went.

My body is not peaceful, my back has not been pronounced fixable by surgery, though I see the second opinion doctor again next week. I did not yet have my MRI disc in hand, so with new x-rays, he could only be sure of so much. Based on that, he said he thought surgery would relieve just the specific nerve impingement running down the outside of my right leg. This causes an annoying symptom, a numbing ribbon that includes my three outside toes. It is not the major problem for me. Pain and weakness in my whole lower back is. I liked this doctor very much and if I did do surgery, I would probably go with him.

I left his office realizing once more that my issues are not simple to address- they are a many layered cake. Muscle atrophy remaining from MS, arthritis, which this doc noted as more significant than my last surgeon, recurring bouts of inflammation, which, if not MS, may be caused by another auto-immune disorder, and mild spinal stenosis altogether create this dense confection. It felt as if I was again facing the reality that this loss of functional mobility is not going to improve very much. Reality always wins any disagreement I may have. Going forward is more about managing my body, and I am deep into exploring a variety of hopeful solutions to address the pain. Somewhat lessened already, I am swallowing new drops and using creams of various kinds that have mitigated the worst of it.

It is ironic that the idea of becoming a grandmother exacerbates the battle of accepting my condition. The grandmother who bounces the baby boy as she walks around and sings him to sleep, the one who easily picks up and puts down a squirmy little fellow for a diaper change, the one who chases after a giggling toddler is not the grandmother I will be. I cannot help my daughter with cooking or cleaning or doing errands for her. The grandmother I am is safely sedentary. The grandmother I am cannot sit up for long periods of time. Who Grandmother Judi will be is yet to be revealed and I am working on becoming more content to let the picture unfold as it will, and not as I will it. That leaves more room for joy, a much more delightful state of being in which to anticipate my grandson’s arrival.

Peace I ask of thee, oh river, peace peace, peace.

When I learn to live serenely, cares will cease.

From the hills I gather courage, visions of the day to be.

Strength to lead and strength to follow, all are given unto thee.

Peace I ask of thee, oh river, peace peace, peace.

Written by Quaker Gwyneth Van Anden Walker in 1947

Grief Stew

8/24/19

I inherited an older office chair for my desk, the one piece of furniture I had left to purchase for my home. I am on the Quiet Room committee, where six of us have decided how to transform someone’s old office into a space for grieving families, a meditation spot for staff and residents, and an official calm room for anyone to rest within the bustle of a day. When I first arrived at Kendal, I was astonished to discover that there wasn’t a non-denominational chapel of some kind. I heard there used to be a Quiet Room designated for this purpose, but when the new Memory wing was built, that space had gotten absorbed. Six years later, with the help of others who also felt this to be a glaring lack at Kendal, we now have another Quiet Room. I got the old office chair from there, just for being in the right place at the right time to inquire about its future destination.

The chair is not pretty, and is rather tall and imposing, but it is very comfortable, and adjusts every which way. The two reading chairs I brought with me here from Richard’s Manhattan office are sleek and comfy for those of us who can still rise in and out of cozy low chairs with lower arms. Many of my Kendal friends require the sturdy high arms of my new acquisition for better leverage. It will also nicely accommodate my tall and lanky son-in-law. He has not yet had the honor of sitting there but perhaps he will later this week when he and his mother, who is here for a two week visit, and my daughter, will come to take me home with them for an overnight. I am looking forward to having a broken English/Bosnian chat with his mom on becoming first time grandmothers together in December.

Here is a journal entry from last month. Grief arises at it does, when it does, on its own time.

Diary 7/20/19

Recipe for Grief Stew

serves one:

2 cups tear broth (comes salted, don’t add more salt)

1 small handful of disbelief

2-3 chunks of seasoned sorrow

Distilled years of shredded future dreams (to taste)

½ cup of sweet memories and acceptance

¼ cup of dried loneliness

½ teaspoon of astonishment

3 heaping Tablespoons of loving gratitude (optional, but highy recommended whenever available)

After bringing to a boil, lower heat, and simmer for 1½ years. Store in fridge. Eat as necessary when the mood strikes.

Recommended for dessert: a sweet memory.

You are sitting outside on the deck, covered in sweat and the confetti of sawdust from working down in the woods at your portable sawmill. Morgan, the dog, is panting at your feet. Walking in the back kitchen door, you had filled a 12 oz. tumbler with water and brought out a plate with an apple and a chunk of our homemade manchego cheese for lunch. Overlooking the sheep in their paddock, source of the milk that made last year’s cheese, you take off your cap, showering the Adirondack chair with more wood chips.

Drinking down the water in one long chug, you gaze below at the ewes nursing large lambs and chewing their cud, and then up at the mountain across from ours. The cicadas are buzzing, so it must be August. Morgan waits patiently for the apple core that is sure to come, delicately taking it from your fingers at your “OK” command. The cheese is gone to the last crumb. Slapping your cap against your leg, you replace it purposefully on your head. Wiping your resinous hands on a paper towel, after brushing dirt away unsuccessfully from your overalls, you stand up and walk back down the hill to complete what you began. Morgan dutifully tags along behind having lapped up water from his bowl.

Not wanting to track more sawdust in the house, I come out to collect the plate and the glass you left behind, listening closely for the sawmill’s whine. I am relieved to hear the motor is still behaving for you after tinkering with it in the early morning. When it is nearly dark, after feeding the horses and sheep, you will trudge back up to the house and tell me of how many boards you cut from that particular dead oak, and that tall pine you culled last fall. You will list the 2×4’s and 8’s, and 10’s, if they were straight and free from knots, and tell me how you will use them to build the future barn. You hauled the milled wood by tractor to our east facing plateau where you stacked it to dry under the slanted roof you made for the growing pile of lumber.

The barn never got built, but the memory of you is sturdy and clear as day.

After the Lawnmower

8/23/19

The back saga continues. In short, the new MRI of my low back issues did not convince my surgeon that I needed surgery and he was singularly unhelpful in having any solutions or understanding of how I could be having the symptoms I am experiencing. I think he did a very good job with my cervical operation, though his narrow view of my current presentation was puzzling to me. However, he did recommend that I see a D.O.,who is a non-surgical spine specialist. Because this other man is so highly sought after, (as I found out from other Kendal residents) my appointment with him isn’t scheduled until October 31^st. I have also found another local lumbar surgeon recommended by residents, for a second opinion of my MRI. Him, I will see on September 12^th.

I am still quite certain that a bulging disc touching the nerve root at L4 is largely responsible for my pain and constant inflammation. I am hoping that someone with new eyes will either confirm or deny this. If I am wrong, I hope to learn how to interperet what is happening correctly and offer me other solutions to deal with my issues going forward. In the meantime, as soon as I understood that my relief was not forthcoming from somebody outside of me, I began to renew my own resurces of self healing. My nutritionist continues to send me supplements that have reduced the pain level, I have summoned my own “mind over back pain” visualizations with deeper focus, and I am finally a legally registered medical marijuana user in Ohio. Cannabis is a great help to many with spinal pain and MS damage, and I am no exception.

All of the above tools do not eliminate my pain, but have brought it down to manageable levels. I still am very careful and cannot accomplish as much I would like to every day, but I am not in agony. It is tolerable, and for that, I am very grateful. Over time, I am having more pain-free moments, which I try to use as a template to calm my overworked hyper-alert brain-immune system-inflammation cycle. Slowly I am retraining my nervous system to communicate more quietly. Once again, my body is a Teacher for me to disengage from the physical trauma/drama of living in my body. As I have said many times before, I’d like to learn my life lessons from a different textbook, but this is the only one I have. I respect it, and so far I am learning to love it over and over again. Love is healing, active, patient, strong, and kind.

Here is an August poem.

After the Lawnmower 8/19/19

Stillness

Intermittent trill of cicadas

the slightest breath of a breeze

swishes leaves of the viburnum bush

small birds twitter below 

loud honkers above

conversations flutter through the open window

air conditioning units hum across the way

At Buttonbush Pond, no rain

abandoned shores of mud 

frog eyes float in the shallows

Still, quiet, camouflaged

startled, their strong legs

push them deeper 

into what is left 

of the dark fermenting brew

Crickets chime me to sleep at night

Misty nostalgia

swirls a cloak

around another passage

evoking the past

anticipation rises 

shedding

unhurried tapestries of seasoned gold

I need only sit, and watch, and listen

Anniversary

8/8/19

Our would-have-been-49th wedding anniversary is today.  I do not feel touched by sorrow but rather I am amazed to revisit that long ago memory from 1970. Those two young people (I was not yet nineteen, and Richard had just turned twenty) standing there in their modest hippie-ish finery, seem now so innocent and brazenly confident of their life course. We had been living together for two years, but the time had arrived to take the next step.

The ceremony took place outside in the woods at the home of my mother’s long time companion, with our families and friends gathered loosely inside a circle of newly planted hemlock trees. Our minister was my grandmother’s neighbor who lived just down the road from where we were to be wed. Reverend Adolphus Bryant, then in his 80’s, stoically climbed up the dirt path approaching the mountain plateau to officiate.

Given that he was a staunch Methodist, he and Richard and I had worked hard to create a ceremony that also wouldn’t offend Richard’s Jewish family. I believe the biggest concession was saying “according to the life of Christ” as opposed to, “in the name of Christ.” Truthfully, I think that my in-laws were simply relieved that we were no longer living together unlawfully, and that no unwanted babies had been an unfortunate result as of yet. 

It was a lovely August day in Woodstock, NY, and as field wildflowers offered little but Queen Ann’s Lace for picking, Richard and I reluctantly agreed that I would carry large daisies from the florist for the occasion. It took him longer than expected to fetch them on the morning of our marriage, and he was a tad later getting them to me and into his place further up the hill above the circle than anticipated. There were two glitches. First of all, the daisies were dyed lavender to match my handmade purple dotted Swiss white dress (how unnatural, those dyed flowers, and not what we asked for!), and secondly, Richard’s visual cue to descend to me was for everyone to be assembled inside the circle. Human beings acting as they do, a few people were not obedient to that request and hung around the outside instead. Richard waited. We all waited.

My mother, who was anxious and impulsive at the best of times, shouted up to him, “Richard, you can come down now!.” He never 100% forgave her for that embarrassing moment, but it did get things rolling after that. We finally stood side by side as two childhood friends sang Dona Nobis Pacem with my mother in a lovely round. Then we both proceeded to stand together in front of Adolphus. There is a great photo of us and everyone else looking very somber while the minister spoke, and a second one (the photographer friend of my brother’s being one of the un-circled participants), shows the two of us grinning widely at each other while the rest of the group was still looking soberly down in prayer.

It was a potluck reception, there against the stone wall beneath the trees, presented on a covered piece of plywood placed on top of two sawhorses. I had made a wedding cake out of  various cake pans from my other grandmother’s house who lived right across the small valley appropriately called, Shady. The cake was layered in a, um, charming, way, and decorated with blueberries and grapes. I remember little of the subsequent chatting and eating until it came time for my family and most of our friends to take out our many guitars and start singing songs, which of course you did in Woodstock, in the 1970’s.

Richard’s more traditional immediate family all attended this ceremony and his mom wore a Jackie Kennedy style navy blue sheath dress with smart white piping. I remember her sitting cross legged, on the arm of a chair, nodding and smiling at the young people, (well, my mother was included), all singing songs together. When we got around to singing some blues, up came the classic, “Cocaine, running all ‘round my brain.” I watched my dear mother-in-law’s smile fading to a slight frown as the lyrics of that chorus came by again. 

Somehow we all survived the event with lots of good will. Best of all, none of our elders twisted their ankles on the way up or down the hill. After a night of more singing and storytelling with our friends outdoors under the stars, we fell asleep in our sleeping bags, one by one. Lacking refrigeration, the next morning found us scooping out by hand, our favorite thoroughly melted ice creams that good friends had brought with them for the celebration. It was a sweet and sticky, spontaneous, dairy filled pre-breakfast. Rinsing off our hands in the pipe-fed spring at the base of the hill, we were further fortified by toast and eggs when my mother appeared to summon us all indoors. And that was our post wedding brunch. Richard and Judi were officially wed. 

Kintsukoroi

8/4/19

Inflammation is caused by chemicals in your white blood cells rushing to the point of injury and pain. Emerging from your bone marrow, that puffy swelling around your recent knife cut while chopping vegetables, is courtesy of your immune system at work. It is there to protect you as your cut heals. Because my pain is from a long term accumulative compression of my spinal cord, my immune system has been on the job 24/7 for years. It is a chronic pain condition, not an acute one. The inflammation never lets up and only increases my pain to red hot acute sensations that radiate throughout the length of the nerve pathways involved.

My neurologist knows all about this. When I saw her last week, she put me on a week of oral steroids to bring me some relief before I see the surgeon on the 14th of this month. One effect of steroids is to reduce inflammation. She knew that I am not a fan of drugs but I readily agreed to take them. Ice packs, Ibuprofen and herbs would only take me so far, and I knew my body needed help. Steroids affect us all differently. In the early days of my MS diagnosis, steroids were the only drugs available at that time to halt inflammation in the MS brain. 

One neurologist put me on three days of intravenous Solumedrol which was a standard procedure. I felt so exhausted on a systemic level from the MS exacerbation I was experiencing, and was so overwhelmed with the unknowns of this disease, I agreed to sit in a room in the local hospital hooked up to an IV drip for several hours each day. After I came home, I felt more and more jittery, anxious, and agitated. I remember swatting Richard’s hand away in an irrational rage that he dared to help me out of the car. I felt like an angry empty paper bag.

This time, it is just the right dosage and amount to begin to soothe my mini lava flows of pain. It is not all gone, but it is much more manageable. Pain is not running my life and that is a huge relief. Meanwhile, aside from feeling a little too buzzed to sleep well, I am given another opportunity to explore my pain now that I have some distance from it. “Pain is inevitable. Suffering is optional,” arises once more as an invitation. My pain is real but how I choose to deal with it can either create or release the emotional and psychological burden that is quick to attach itself to my experience. Most of my suffering, now and in the past seems to be based in the strong belief that; “This is wrong and should not be happening to me.” 

Opening to hold my body in love, injured exactly as it is, brought me to remembering the Japanese art of Kintsukuroi. Broken pottery is reassembled with lacquer containing gold, silver, or platinum powder. The resulting object shines along the cracks with exquisite beauty. That which is broken is made whole, the new and the old, the damaged and the resplendent, are indistinguishable as separate states.

When I can love myself in all my broken human ways, the cracks are filled in and made whole with soft shining light. It is humbling and I am given a meaning for my suffering, which in itself is a rediscovery of wholeness and health.