Judi B's Blog

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.

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.

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.

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 18^th , 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.

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.

Diary 1/27/19

Inevitably, I think of my childhood illnesses while stricken with an upper respiratory virus that has kept me totally in bed for a couple of days. This helpless misery of feeling so ill that nothing can take you away from the experience of suffering, reminds me of being sick in my bed as a child. My mom was a sporadically nurturing type. I do remember Campbell’s canned cream of tomato soup with buttered Pepperidge Farm bread sliced into small squares floating on top. Or soft boiled eggs with crumbled Saltine crackers and ginger ale if it was tummy trouble. After the nursing mother role wore off, she just hoped I would get better already so she could get back to her life. Apparently I always did.

When I was six, I was stricken with Rubella measles that lasted three weeks. For that bout, I stayed with my baby sitter’s family which I had often done in the past. One afternoon, I heard weird moaning sounds that frightened me. The family was going on about their business downstairs and I had no idea what to do. Finally, I realized that I was the one making those noises. I had a high fever and must have been a bit delirious.The shades had been drawn the whole time as it was feared my eyes would be damaged by exposure to the light.

As a young adult, I was stricken with a severe case of chicken pox. I taught nursery and kindergarten classes in a private Montessori school. Though it was rampant in the public school system, I was the only one in our whole school who came down with the illness. The itchy white blisters covered every inch of my skin both outside and some inside. It was torturous. When my older daughter had a moderately bad case of it when she was eight, she said through her tears, “Mommy, the only good thing about having chicken pox is that it will be over soon.” The only good thing about being in bed with an upper respiratory ailment is that it will be over; sooner or later. Most of the folks I know who have had this say it took at least three weeks just to stop coughing, let alone regain their energy.

The other good thing is that right now I am in lying on my bed in my new room full of painted yellow sunshine. It is much more spacious than my old dwelling, with distance enough to see across to my living room area. I am taken care of by nurse mommies, checking my temperature (no fever), bringing me menus for meals, (soups, salads, and tea), and distributing Robitussin and an albuterol nebulizer in a face mask so I can breathe better. They have decided it is not bronchitis or any other dastardly disease; so no antibiotics. That is also good news.

I do sound like several croaking bullfrogs fighting over a lily pad. It may well interfere with reading my poem at a sharing with my Writer’s Bloc group this Thursday. It would be distracting for an audience to interpret frog ribbets. Ah well, that is what happens when you are ill. All those plans lie fallow until you get back on your feet or reclaim your voice. Not a tragedy by any means. Just a delay.

Yesterday there was a misery moment of suffering such deep weakness, disorientation and pressure from overstuffed sinuses, and gasping, wracking coughs, that I knew that only Richard could understand just how badly I felt. Since he wasn’t here…poor me. Daughters and friends near and far check in and I actually am not lonely. Plus, I feel a bit better today and was very bored with lying around: a good sign that my body is moving in the right direction.

My inner mommy, who is also a body centered psychotherapist, thinks perhaps this woman is carrying more unshed grief in her chest. I think she is right but I cannot press a cathartic ‘deep weep’ button to deliver on command. Grief has her own ways and timing of expression and I am confident that once I can breathe freely and not burst into gut wrenching coughs, she will emerge for a thorough cleansing. In case I needed a catalyst, Richard’s one year death anniversary is coming up in less than three weeks.

It is still unbelievable to me. His death, our almost fifty years together, our entire history of life accomplishments, have drifted far from my everyday reality. He is ever present; not as he was, as ‘that man, Richard’, but as the presence he radiated from within all those years. His unique attitudes or opinions about my current earthly life sneak into my ear from time to time, and I chuckle when they do. I know they are my thoughts offering a different perspective cloaked in his speech patterns. His internal essence is quietly there in any moment I choose the awareness of being. How can he ever be far away from me?

I can turn my head on my pillow and look into his eyes in my favorite photograph of him. Hanging on the wall beside me, he is slightly squinting into the sun wearing his Hudson Valley Draft Horse Association cap. My Dutch friend Daphne snapped this when we were together on Mount Blanc. I love it because his eyes are looking directly forward at me. The vast distances beyond the observation deck peering into Switzerland or Italy or France inform his gaze. His eyes reflect the intensity of the man and his serious, playful nature captured in that one moment of our lives. It is but a thin disguise of Love I am seeing there, and it nurtures me.

Diary 1/10/19

My creative muse has quieted down from the upwelling riotous mode I arrived with at Kendal. I am less urgent about the need to express myself in any medium. Today, I managed to pen a celebratory drinking song (wine, beer, or water?) as a birthday salute to the talented singer that hosts the activity we call Song Swap, every other Wednesday evening. She knows by heart, hundreds of songs from many genres, though is an expert on Civil War era songs. Performing all over the world, she and her husband have based themselves here for several years now. We are so lucky to have them. He is our main AV man and recently rewired and digitized the entire auditorium’s sound and lighting system for any sort of presentation.

Other than drinking songs, I am rather quiet, matching the long awaited descent of snow and cold temperatures by hibernating. The too early spring-like weather we have had for so long, summoned sprouting plants that must now retreat back underground to reawaken in a few more months. The current overnight freezing temperatures will keep the recent snowfalls covering our world. I do not feel frozen, but rather, suspended. A Pathwork lecture* (number 224) that I remember from years past, was titled Creative Emptiness. For me, that is a description of the taste of Awareness in silence. I experience deep draughts from a plenum of emptiness that brims with unlimited potential. I am simmering things for the future but even a personal daily diary has been a stretch lately and my blog an inviting blank page.

I am still here, though. In lieu of anything more thoughtful, I will share that my move to a larger room is at long last actually in progress. Yesterday, the noise of ripping up old carpeting in there brought knowing glances from everybody I saw. Workmen installed the underlayment for the incoming laminated wood flooring I purchased, and they say, it will be done by Friday. The head of facilities for the Care Center and I both thought we should count on that as meaning that by Monday or Tuesday, I could be moving in. The empty boxes cluttering up my small room for the last month will now be filled. I get to change my mailing address from 514 to 602 Kendal Drive. Even though it is just a move down the hall twenty five feet or so, that means contacting the P.O., Social Security, the bank, my insurance, my tax man, my lawyer, etc.

I am not looking forward to the temporary chaos that will ensue over the next couple of weeks. But it is my final move and I am very much looking forward to being settled in my new space. It is a great location in terms of accessing the places at the Care Center I most utilize now, and it has the advantage of no longer being as close to the nurse’s station. That can be rather noisy with activity, both during the day, but also at night as the staff keep themselves entertained during the long quiet hours when most of us are sleeping. Besides having more needed space, the loveliest advantage is that I have a kitchenette, ensuring that I can fix healthy supplemental meal additions for myself. Then, right outside my door, is the Country Kitchen, the make-to-order breakfast spot for the Care Center. It was originally designed solely for families to make their own food or to share take-out meals with loved ones who were ensconced here in recovery, or in their final days.

That kitchen has a communal stove, (I am only allowed a microwave) double sinks, dinnerware, pots and pans, etc. as well as a large fridge with a freezer drawer. My personal tiny fridge freezer can harbor flat ice packs,, but not much else. I am the queen of ice packs around here, using them on my back all day long. If I like, I can sweep out of my room wearing my bathrobe directly across the hall to break my fast with friends. The space is active from about 7:00 to 10:00 in the mornings (closed on Sundays) and sporadically with occasional families and other small gatherings. I am awake early anyway, so the pleasant chattering and delicious morning food smells will not bother me. They arise from friends and immediate neighbors and the small kitchen staff are the best friendly waitress/cooks imaginable. They know each of our ‘usuals’, and the right coffee or tea or particular juice and muffin appears at your place the minute you show up.

My new room is painted “Veranda Sunshine” yellow and I am happy to know it awaits me, glowing cheerfully, even on a dark January day like today. And it will be complete with new “Butterscotch oak” flooring. Moving into my last home while informed by stillness, is my little heart’s desire.

* The Pathwork is a psycho/spiritual practice my husband and I studied for many years. https://pathwork.org/the-lectures/