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Loneliness and Love

Diary 4/1/19

April is here.There are forced forsythia branches in our morning eatery sunshining up the kitchen. It is sunny outside today, but chilly, and I am watching yesterday’s snow leaving the south facing roofs. Now the grass is slowly peeking through the northwest lawns in my purview. The sky is blindingly blue and requesting my presence. I have a meeting at the far end of the building later this afternoon, and I will bring my coat and continue on out the back door to visit my favorite accessible bit of Kendal’s “wilderness; the Buttonbush Bridge. The pond there is murky and dark after the ice melted, filled with the ratchet of spring frogs, shrill peepers, and too many bird calls for me to discern individually. Last time I visited, the clash of two geese on the apartment roofs behind me, shouted down all other sounds until they slithered down the shingles to the ground and flapped raucously away.

It is always a revelation of an experience larger than myself. I leave touched and opened. I did so today, learning why those two geese had caused such a fuss on the lawn behind the pond. They chose this pond as the spot to lay their eggs. It was now their territory. The mother goose created her nest right on top of a muskrat’s nest. The mound had been there last week and looked even bigger and sturdier now. Sitting on her eggs, the goose reached out her long neck from time to time gathering more strands of duckwweed within her reach to add her contribution to the mound.

Both creatures don’t know that this is a vernal pond, and by midsummer, it will be dry or reduced to a very small puddle left in the middle. How they will get on with one another I can’t imagine. Geese are very aggressive and muskrats are very shy unless cornered. Perhaps the upstairs/downstairs arrangement will work out for them. One enters by air, the other by underwater doorways. I wish them both well in starting their new families.

Three days ago I awoke with such a longing for the simple human intimacy of being with Richard. This initially painful gift is also a heart opening. Only when I drop down as deep as the pond, am I touched by Love, an equally welcome though differently painful opening.

Diary 3/30/19

Morning loneliness

seeps through the skin

foggy tendrils of sorrow

grasp coiling around

your ghost

Your breath is gone

you hands your smell your voice

the empty spaces

exuding lost masculinity

intimacy of humor

the steadfast love of you

not here not there

Pulling me

through the illusion

of separateness

into restful

arms that hold

for a moment

nothing and everything

Such Intimacy

I can hardly bear

.

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Undaunted Daffodils

It has been snowing lightly all day. Despite that, “April, come she will…” The daffodils will withstand this day and emerge as proof that tomorrow is the first day of April, no fooling.

Despite the slow nature of my recovery, my body is recovering. Some days I walk accumulatively about 3/4 of a mile. Some days I sit for two meetings, my my meditation group, and then dinner. Remembering my former life of consecutive actions filling a whole day is amazing to me. Today is not one of those days. After walking carefully on the well salted, but icy path to Quaker meeting and back, I am tired. I take my cues from my body for the need to move or to rest, and today is all about resting as the snow lazily drifts down.

The “Butterfly Dream” dance I mentioned in the last blog has gone through many iterations. The marketing folks at Kendal want to use the film for a promotional blog since it features me collaborating with an Oberlin dance student. Our intergenerational connections are important to residents here and that includes the children at the Early Learning Center down the hall. They, too, will be filmed chasing “bubbleflies.”

For the Kendal blog, I was asked to cut my piece down to three minutes. Then two minutes, then back to five again by the videographer. He said he would film the whole piece then edit it down to two minutes for the promo. He is really masterminding the film that will be shown at the Kendal Spring Fling event. He managed to get permission to use a gorgeous slow motion video of butterflies from the Cockrell Butterfly Museum in Houston that he can superimpose on us dancing. The last five minutes of Adagio for Strings will play as he plugs in the voice over of the parable prerecorded beautifully by my friend, and then he films us dancing. He will edit down the highlights for the two minute promo. In our many email exchanges he has been creative, inspired and very professional. I believe he will do a masterful job for both films.

Like the daffodils, this dance is my small plot of undaunted buds, ready to adapt to the changing weathers and emerge as colorful harbingers of spring.

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Personal Signs of Spring

Diary 2/18/19

The Ides of March are upon us (‘ides’ being a Roman method of naming the lunar cycle in March; Shakespeare named the dangerous time frame for Julius Caesar’s death, not for the rest of us) and it is good to know that spring is inching closer every day. Despite the gathering snowflakes on the lawn this morning, my ‘dirt’ fingers are itching. I can’t get out there to work the earth or plan landscaping for outside of my windows yet, but I am mentally puttering inside with potting the six plants now under my care. That is the #1 sign of my internal spring returning.

When I first arrived at Kendal I was adamant- No Plants. In my widow shock, the concept of caring even for a plant was beyond me. I had nothing to give. I barely kept a beautiful orchid alive that my in-laws sent me as a welcome gift. Likewise, I was relieved to be cooked for at every meal no matter what was served. It turns out my body is still sensitive to even incidental gluten and processed grains on a daily basis and I really do not like beef or pork. I am so glad I now have a kitchenette.

My personal spring #2 sign, is that I am cooking for myself more often to supplement the meal choices on offer. Kendal has a 7 week rotation menu schedule, changed for every season. I now know that ‘Caribbean Chicken’ tastes less appealing than it sounds. By my standards, the vegetables are mostly overcooked, there is little salt, and even less seasoning in most dishes. There are some exceptional meals, and there are unannounced surprises like excellent seafood gumbo for Mardi Gras. The variability and limitations of what I both like and can safely consume, are uncertain week to week.

Learning to use my microwave in unique ways- gluten free ‘banana bread-in-a-mug’ on Sunday mornings, Yum!- and ordering a small InstantPot will give me a much larger scope to stretch my wings. I am so grateful to cook again.

Speaking of wings, the #3 sign of my burgeoning growth is: I am going to choreograph a dance for Kendal’s next big community wide event. Spring Fling is about dances and the theme this year is butterflies. My senior dance major friend from Oberlin is returning the favor of being in my five minute piece as I was in hers for her senior project last semester. To begin our piece, another friend will read: “This is from The Butterfly as Companion: Meditations on the First Three Chapters of the Chuang-Tzuby Zhuangzi or Chuang-Tzu, a great Chinese philosopher who died in 327 BCE. He was a major contributor to the philosophy of Taoism and had great influence on the rise of Buddhism.”

“Once upon a time, I dreamt I was a butterfly, fluttering hither and thither, to all intents and purposes a butterfly. I was conscious only of my happiness as a butterfly, unaware that I was myself. Soon I awaked, and there I was, veritably myself again. Now I do not know whether I was then a man dreaming I was a butterfly, or whether I am now a butterfly, dreaming I am a {wo}man.”

My friend, Martha, and I have many non-corny ideas to set this into literal motion using five minutes of Samuel Barber’s Adagio for Strings as our musical backdrop. She is also a meditator and this is a classic parable on the nature of reality. People will hear what they hear, and see what they see, but for us, it is a deeper revelation we are exploring. I just found out today that we can have it filmed by a professional photographer who is married to a social worker here. Kendal has a newly installed large screen to view it in the auditorium. Rather than doing a live performance, this video will provide for a more relaxed creation in case the actual night is a ‘bad body day’ for me. If it turns out well, I will learn how to post it on this site. My body is still sore, limited, and shaky, but I am filled with visions that cry out to me, “Come, move as you can.” Together, Martha and I will, and will not be, flying.

May we each find our personal signs of new growth in the midst of the world tragedies and sorrows that we all bear. May our tears water that which is starved for the waters of Love.

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Story Pie

Diary 3/7/19

The sweetly dreaded question, “How are you?” comes round many times a day. It is both a social exchange and true curiosity. It is also an implied declarative statement of, “ I see you are up and around after major surgery, you look great, and now what? ” The dilemma is how to answer it without an inner snarl because there are a lot of people to pass in the halls everyday. The question arises from nurses, aids, fellow residents, friends and strangers to me (but who somehow seem to know my name even if I’m not wearing my name tag).

Each one requires a different answer depending on their role in my life. It is also a stumper because everyday so far has been very different from the last. One day I walked 300 feet to and then back again from a farther dining area. The next day, walking that far wasn’t possible but I sat up for an hour, four different times that day without too much pain. I am definitely standing taller as I use my rollater. My neck realignment requires a new, improved posture to keep the sharp animal claws from sinking into my shoulders when I slump forward, as opposed to the dull ache of the creatures just hanging there when I am upright. When I take a step, I can ask my left heel to hit the floor first, avoiding the former foot drop issue I had on my left foot. I wore an foot/ankle/orthotic (FAO) brace for many years to prevent falls when my left toes refused to lift and were tripping me up. Now my PTs suggest not using it unless I am walking long distances. Rather than the brace holding my foot flat for safety, I need to work those small muscles to flex and extend again on their own.

The source of my ongoing back pain is also more clear to me. Now that I can feel how atrophied my muscles are in my trunk, back and butt, it is evident how much my inability to hold myself up is the cause of that pain. Because it will take a long time to build up muscles again, it will be a while before the ‘sitting up” pain issue is resolved. It is not a separate category of pain. It was neither caused nor immediately cured by the surgery. Rather the surgery offers me a welcome pathway to relief over time.

“How am I?” is a very loaded question to answer. Mostly a cheery, “Hanging in there,” or “Pretty good, and you?” is sufficient. I can also say, “I am fine, but my body is going to take at least a year to heal.” That is the truth and backs off the eagerness people have to hear the happy ending of my story. The ending is a lot of ongoing hard work, and it is the best job I could have. People love drama- either the sadness on learning of a recent death of a fellow resident, or the happy ending to a recovery story. Everyone is entitled to their share of the story pie. In a community, we belong to one another no matter how close our social interaction level. Your story is my story, too. And yet, we are all plagued by our own politeness. My friend down the hall who just lost his wife of 63 years, says the question drives him crazy. I know that I am not the only one.

For the limerick assignment in our poetry class last fall, I wrote this one as part of a series:

“How are you doing today?”

I’m bamboozled to know what to say.

I say that,” I’m fine.”

Such a meaningless line,

We’re relieved just to be on our way.

A little snarky, but it rings a bell for many of us who live within the Care Center of Kendal; we who are here because we have designated compromises and do not live independently in an apartment or cottage. It is hard to treat the phrase as a simple greeting. How about, “Good to see you,”? “Good to see you, too,” is a lovely response. Of course you can ask me how I am… if you really want to know.

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On Waking

 

Diary 2/27/19

On Waking at 5:30 a.m.

I can just reach the curtain

in my rehabilitation room.

Pulling it back revealed

the setting moon.

She has always been there

but I just discovered her

low in the sky this morning.

I placed her waning crescent

in my paper cup chalice

and drank deep.

She soothes, sings, patiently

healing with every swallow

four scrimshaw carved bones in my neck.

The pictures there

now covered with metal plates

held by screws,

tell the story of a spinal cord

just freed

from years of slow strangulation.

Movement is painful

joyful

miraculous

rediscovering like the moon

a dance that has always been there

patiently waiting,

pulling back the curtain on a new stage.

 

I am moving back to my room tomorrow morning. The euphoria of sparking new connections has passed into the reality of honoring how atrophied so many muscles are and committing to the year of hard work before me. It is a good thing that I am a stubborn willful woman (OK, persevering and courageous on alternate Wednesdays). Thanks to you all for your ongoing support.

 

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Headlines: Woman Counts Butterfly Reps

Diary 2/25/19

Today is the day that my PT and OT sessions got really interesting. In both of them, I was assigned sets of exercises to do on my own time. This is challenging and I look forward to accomplishing the tasks. I have never been a repetition oriented exerciser. I usually find it a bit boring and a little mind-numbing. I do not, as people often do, choose to watch TV at the same time I am exercising. If I bring my full attention to anything I undertake, I find it more fulfilling. Pleasure for me is focusing on each action, and then I am less prone to wondering at count ten, what the lunch menu will be. But counting how many lifts you are doing can also mark your usual fade out time and give you the structure to do just One more. OK. Two more. Yay! Three more than yesterday! There are times when only dynamic, linear repetition can bring you strength and build endurance; or, recreate functional, efficient mobility as I did the first time around when I was a baby and toddler.

Right now, I am engrossed to see how much any given movement engages with new information everywhere else in the long neglected muscles of my body. Neglect was born from having a failing neurology to get information to them (efferent connections) and to the pathways returning (afferent) feedback to the brain. My muscular control has slowly faded into the background altogether. Most of my muscle groups haven’t automatically worked on their own since my early days of MS, some forty years ago. I could still command them by thinking of them in my mind for maybe half that time. And then the commands stopped being issued because I got fewer and fewer responses. The phone kept ringing but no body was picking up.

The thrill of feeling how hard my core muscles work to lift a 2 pound weight across my chest and back to the side was a headline above the fold. I know how atrophied my back and leg muscles have become. It is likely that my left side may always be weaker than my right because of past MS lesions. But it was wonderful to feel that the pulling sensation while working my arms wasn’t restricted only to my arms and shoulders. My whole body was working hard. When you lift a limb out and away to the right side, your left side automatically works to stabilize you so you stay upright in gravity. This is basic kinesiology 101. I am learning it not from a textbook, but from within my own body.

My butt and lumbar muscles were exhausted long before my weighty butterfly arm stopped flapping. As they should be. That they work at all, to know that they are very much still tied into the whole of me, makes me teary. Though Matt and I were joking around, he knows how much it means, and with a smile, predicts I will be very sore tomorrow. Cracking through my cement bound shoulder pain is not as much fun, but healthy soreness from correctly directed exertion is an article I am happy to write. Each count of a rep brings me closer to my goals of reconnecting nerves to muscles.

Matt also took me back to my room- and I walked all the way there and back with my rollater, maybe one hundred and fifty feet, each way, with my left heel striking the ground with each step. I wasn’t using my arms to hold me up. I wasn’t dragging myself along. I was standing up straight. He said that on Wednesday we will shift into part B of my rehab, which is to help me get out of skilled nursing and back into my room. He will make sure I can take a shower, open and close my closets and drawers, and reach things around my kitchenette safely. He will see how well my beautiful reading chairs will work for me in terms of sitting and rising and if my bed is at the appropriate height. In short, he will make sure my sunshine room is properly equipped for this next phase of spreading my wings. I will keep you posted in the next edition of Rep Woman, hot off the press. If I am not too sore to type.

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Rebirthing

Diary 2/20-23/19

She is living in a “world of hurt”, a “world of pain”. I have now acquired a new definition of pain. Having lived with pain for so many years because of neurological inflammation from what I believed was due to MS, I thought I knew pain. Mine came on gradually, over the course of forty years. First it burned all around my right sacroiliac joint, which has popped in and out of place many times as my muscles to stabilize it gave out. Then pain spread around my whole lower back. It seemed to form a river right up my back, wrapping all around my rib cage, then, extending up my neck, slamming into the bottom of my skull. More and more serious pain symptoms appeared in the last two to three years. I felt as if I were wearing my skin inside out. The sides of my hips, my groin, and down the ‘tuxedo line’ of the outside of my legs to my toes were being pinched into flaming hot numbness.

Sitting up was the worst, and standing up or walking became less and less possible as profound weakness accompanied the pain at the same time. The nerve information to my lower body was being cut off. Lying down made the sensations less sharp, and was tolerable as long as I distracted myself with light reading, writing, and short burst of socializing with family and friends, and I was (still am today) the Queen of Ice Packs.

Now I understand, that although I had MS starting at age sixteen, the worst of my experience has been due to a compressed spinal cord in my neck. MS definitely left its tracks of compromise. I am permanently weaker on my left side. My memory and ability to function under stress is worse, (since my mid-twenties), and the sense/memory of utter exhaustion when I was in an active MS exacerbation has somehow left its mark. It is as if when the myelin sheath coating on my nerves was stripped away by MS, it also took away some insulation that buffered me from ‘too much ‘ stimulation, from either joyful or difficult circumstances.

All along, the actual source of my pain was due to cervical stenosis. My vertebrae were squeezing my spinal cord, the neural tube that holds all the “wires” of my nerves. The laminoplasty surgery I received on Monday, addressed this. My spinal cord is now freed. Four vertebrae, C 3-6 ,have been cut open and the ‘roof’ of the bony structure that houses my spinal cord were opened to one side like a door. That released the nerves inside of my spinal cord after these many years. The surgeon put in new metal plate ‘doors’ held in by screws. The curve in my neck bones, a mild scoliosis, is gone. My post-op x-ray showed my bones lined up straight, like little soldiers. It is a medical miracle.

And now the post operative pain. Those of you who have had back surgery know whereof I speak. I have always thought I have a high threshold of pain from enduring short term traumas like dental work, childbirth and a badly broken ankle. The day after the surgery, when a spinal team doctor came to see me, she confirmed it. She said, “Other people have told me they have a high threshold and I say, uh-huh, and dismiss it, but I see that you really do. This was a major surgery, and to see you functioning as you are already, shows me you tolerate pain better than most. Your color is great, you are in such a good space that I am amazed and very pleased. Your recovery will go well.”

Now it’s my turn to say, “uh-huh.” This is ongoing acute pain like I have never known before. To say my neck and shoulders hurt is woefully inadequate. We cannot step inside of someone else’s pain. It is a very subjective experience. Treating pain has become a whole separate area of medical research and specialization. Understanding how the brain interprets signals and how to intervene with the correct medications is a new science. Reeducating the brain to tone down chronic pain signals is an art. Asking me, “How is your pain on a scale of 1-10”, is kind of ridiculous but the only simple measure that my nurses can use to help me. Better scales would be, “flaying your skin?”, chopping off your arm?, breaking every finger on your hand?” OK, you get the idea. It hurt. A lot. On a scale of one to ten, ten being,’ give me morphine and get me out of here’, I was hovering there round the clock.

The above was was written two mornings ago and still referred to Wednesday when I got home from the hospital after bumping home to Kendal in an ambulance. The EMTs apologized, saying, “ It’s pot hole season in Ohio”. Fortunately pain is never constant but rises and falls in waves like everything else. My pain has been reduced a lot, down to a respectable 3-4 when I am not moving, maybe a six when I worked with my OT and PT. During our work, it was easy to see what I have already regained. Both legs are stronger and have more resilience. Those practitioners have worked with me weekly since I arrived in June. They watched me in a steady decline and are genuinely happy to see me begin to regain what I lost. In a matter of months I hope to surpass the initial levels of my arrival. The hospital PT said in a year I should have a pretty good idea of how far I can go. The spinal cord was bruised for a very long time. Not everything will reactivate. I am not concerned about that. Right now I am just looking forward to my progress day by day.

My nervous system feels overstimulated and unfocused. Like a computer trying to find the right connection for my internet connection, my nerves are that little spiraling wheel, searching for a home. I feel like a baby hooking up a neural network for every new movement I make. “Oh, that’s how to lift your right leg, point your left toe, find your standing balance when you wobble, (even toilet training); it’s back to basics right now. As all infants do, I will reestablish those new highways of muscular obedience the more often I repeat them. Exercise is essential. Babies naturally explore how to navigate their bodies in the world non stop, experimenting every moment they are awake.

My body feels relieved when I find and use a forgotten muscle. It is thrilling, and the pain is beside the point. I am being reconfigured as a woman who is healing, rather than perpetually sliding downhill because it is MS, which cannot be fixed. This is an astonishing turn of events. I can barely take it in yet. It is an obvious gift to my rededication to life. There was a temporary resident in the first community I lived in during the late 70’s who used to say, “Onward through the fog.” Right now I say, “Onward through the pain,” and I am happy to do so. Gratitude is heartful and erupting quietly like a fountain of joy. I am blessed with the opportunity to be reborn. I thank you all for your ongoing support.

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Surprise

2/17/19

I am writing from my hospital bed in Cleveland Clinic. When I saw my spine doctor on Thursday, he was not at all sure that he wanted to go forward with surgery yet. He felt that the L4-5 issue simply could not be responsible for the extreme weakness and pain I was experiencing. He suggested that the spondylolisthesis could have caused the pain but not the weakness. He thought perhaps it was my MS that was complicating the matter. I said I was sure it was not MS, neither from the past nor from a new lesion. He said my MRI’s simply did not justify the reaction I was having. I was disappointed because he wanted me to have an appointment with my MS neurologist and then get an epidural before considering surgery. Having worked my way through the Cleveland Clinic system since June to get to this point, the idea of more waiting was very frustrating.

Imagine my surprise when my surgeon called me on his cellphone Friday night after hours to say he had spoken to the neurologist himself. She had concurred it was not MS so he had rethought my issues. What made sense of the whole presentation, was that the stenosis at my neck was very bad. Even though the affect on my hands and arms was not yet a huge problem, the pictures of my neck vertebrae pressing on my spinal cord shows it is very bad. That could account for my balance problems, and the lower back and leg involvement as well. He asked me to get admitted into the hospital on Saturday for pre-op testing, and he’d operate on Monday. He arranged for me to just stay in the hospital Sunday so I wouldn’t have to travel painfully back and forth to Oberlin to come in again on Monday.

At 1:30 on Monday the 18th , I will have the procedure done. I passed all of my pre-op testing (you will be thrilled to know that my heart and lungs are in perfect shape) and now have all the information I can glean. The doctor will do a laminoplasty. This means he will open my neck from the back, cut open the lamina bones of four vertebrae, C3-C6, releasing my poor squished spinal cord from its bony prison. He will use the cut bones as a hinge, like a door, using screws put in place a new cover plate . It will take 3-4 hours, and I will remain in the hospital for at least a few days post-op. To make sure that I can breathe, I will be intubated while lying on my back for the procedure. That means a sore throat. My neck will also be quite sore and I will be on muscle relaxers to prevent painful spasming for some period of time.

There should be immediate relief when I wake up, but realistically, I suspect it will be months before I know how much my spinal cord can recover after years of bruising. I look forward to my rehabilitation at home in Kendal with the nurses and physical therapists I have come to know well after my eight months in Ohio. I look forward to working at exercises that can start to accumulate building strength once more. I am sure I can handle the new pain and discomfort that must accompany the post-surgical life. To know that the pain and reduced mobility is not chronic, but has the possibility of healing, changes the whole trajectory of living with this body that has suffered so much, for so long

All of it sounds perfectly doable. My body is still aging just like anyone else. But to consider the possibility of regaining any lost body function at this moment is a medical miracle. MS nerve damage has been intertwined with this stenosis for years. It is with much curiosity I anticipate what will be revealed as I heal.

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Alive

Diary 2/9/19

The emotional prelude to the first anniversary of Richard’s death has begun. Kindness from new and old friends undoes me. The smallest gesture of friendship breaks open my heart in stuttering bursts of love. I am extra vulnerable since I have understood the steadily increasing pain and inability to walk, sit, or stand, is due to spondylolisthesis (Greek for “spine + to slip or slide”). For years my vertebrae at L 4-5 have been slipping over each other and then clicking back into place. The clicking stopped some time ago and today they are permanently overlapped. L5 has shifted so far over the top of 4 that it presses directly down onto my spinal cord, severely pinching the nerves feeding information below.

This has reduced my capacity to participate in my new life here. I cannot bear to go to an informational meeting (and there are many to keep this large village informed) that is less than stimulating. Boredom keeps my pain level front and center in my brain. Only if I am truly engaged or entertained can I withstand being part of a group. Even eating a meal with others has been challenging. Sometimes I prefer to get a tray and bring food back to my room. Trying to socialize while paying attention to my meal at the same time as noting the pain, is getting harder to do. I am tired of lying around and it is good that this upcoming sad anniversary is the same date as my second meeting with a back surgeon in the Cleveland Clinic. I need to hear if, how, and when, surgery may bring me some much needed relief.

I originally went to this doctor a few months ago for the stenosis (narrowing of the spinal cord. again due to vertebral impingement) in my neck, C 4-6. That, too, is increasingly causing weakness, tingling, numbness, and pain in my hands and arms. I may end up as a titanium wonder of fusions or with disc implants from stem to stern. I have steadily used every alternative method possible to deal with the early stages of these problems, thinking it was all somehow because of having MS. A lot of muscular weakness to hold my bones in place is because of past MS lesion activity. But my MS has been quiescent for several years, and now I understand the progression of compromise much better than before. Twenty years ago, I once had a Pilates instructor say, “Judi, your spine is a train wreck.” Not what I wanted to hear, but in hindsight, she was right. It is.

I am not unhappy, and when people ask “How are you?”, as we do when we pass one another in the halls, I say, “ I’m fine, but my back is a real problem.” I surely have had moments of despair as I adjust to yet another level of pain and restriction. Overall, I’d still say, I love being alive. And I do. Somehow through all the loss and total restructuring of my life, I cannot relate any longer to that piece of little Judi who always thought it would be easier to leave than stay here in a world full of suffering. After surviving my recent bout with The Nasty Virus, I was so grateful to my animal body that insists on surviving despite immediate misery. I came out of it with a renewed sense of claiming that “I am here”.

I want to experience all of life- including the attending pain and sorrow, and the despair and helplessness. I delight in joy and pleasure and hope, and the deepening peace I find within Silence. I less and less misuse my spiritual explorations as a way to get away from the pain in my back or my heart. I open to all of my personal issues and to those of being a world citizen The horror of losing species after species, habitat after habitat, resulting from the fear-induced denial and greed of our world leaders is also part of being alive in this time and place. I want to live every day as if it was the last one to bring in a new paradigm of stopping human and planetary extinction. I believe it must be that day for all of us.

I want to live as fully as I can as an antidote to potential extinction of the human race. I embrace that I am alive, even as the world as I know it, is unraveling. I welcome all the new souls coming into the world and am curious to see what they bring to the table of apparent Last Suppers. As distressing and sickening as it, I want to live through it all, giving what I can to reeducate and heal. Let us embrace reality; nurture joy, pleasure, and hope, and not delay doing our part. Take action wherever you can. Today.

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Breaking the Ice

Dairy 1/31/19

 

I am listening to my dear friend Cathie Malach’s album. (https://cathiemalach.bandcamp.com/releases) 

It is a wonder of heartful spirited original piano creations titled Heartland. One of the tunes entitled February, is dedicated to me and Richard. Cathie’s father died shortly after Richard, and we shared the intimacy of mutually mourning our losses. After I moved to Ohio, she also moved from Woodstock to the mid-west, to Indiana, sharing yet another major displacement to be near dear family/friends. We have resettled into our respective new homes, where we are busy rediscovering ourselves.

Unofficially, Cathie was a death doula for me and Richard. She simply stepped deeper into our lives the minute she knew Richard had begun his journey in Cancerland. Being as skilled a massage therapist as she is a talented musician, she knew precisely how compromised I was in the body she had tended so well. Less and less able to manage my daily life, I had to climb up and out into a level of worldly interaction I never expected. Cathie helped with every decision on the journey of dismantling our home and moving to a more accessible rental closer to town where we had to set up temporary residence. That rental house became Richard’s temple for dying. His ashes joined with the same nearby stream where I grew up, where he and I played together as young lovers, and where our children also joyfully splashed when they were small. It flows on without us during this deep freeze. I picture it frozen white with only a hint of movement within the dark flowing depths below.

(More detailed stories of the past are in the Caring Bridge section of the blog. I have entries from there still left to transfer, but at least half the material is available. At a certain point I needed a break from rereading what was so recently raw. I think I am almost ready to complete the task.)

Cathie’s music soothes and awakens me, stirring my own creative juices. Now that I am well enough to breathe a healthy lungful of air, it calls me to open my inner ears to unborn songs that need my help to be heard. I have had a quirky reaction to listening to music by myself. I don’t even litsen to the radio, or watch a DVD since Richard is gone. I just- pull away from it. It isn’t as if he and I always shared these things together. His taste in movies was not always mine, and if I didn’t get involved right away in the plot, characters, or documentary subject he chose, I left to go read a book on my own. I still mosly read a lot. We loved the same music and I used to enjoy riding in the car with him, listening to his vast array on Pandora. Preferring our news in other media forms, we hadn’t had a TV hooked up for years. I can easily listen to or watch just about anything with others present. I have heard other widows and widowers say they also had a hard time with former beloved entertainment. Grief is not meant to be rational.

Now I have a regular date to listen to NPR’s program, Wait, Wait, Don’t Tell Me every Saturday morning with my friend Lynn down the hall. As she says, “Laughing together with someone is the best way to kick off a weekend.” I agree. The “listening to music alone” ice is now broken with Cathie’s gifts pouring through me. My older daughter Emilia was just here, hanging up a few more pictures for me. Her husband, Zoran, comes with her tomorrow and his royal tallness will be our handy ally in finishing the decorating job. We will have dinner, and enjoy my sparkling new home. Though I am not talented with technology, I will endeavor to get some pictures up when it is completed.

There are memories and stories to attend each piece of art. There is a curious delight to see them now, some of which have traveled with me, literally, since my chlldhood. Somehow, they all arrived here safely in my own temple of living and dying, housed inside my sunshine yellow room.