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Perennials and Patience

Diary 5/7/19

End of the first week of May! More and more, time seems insensible to the way I live my life. Retired as I am, I do have activities, meetings, appointments and obligations every day. I do have a changing schedule to adhere to. Without them I would feel too adrift, without purpose. In and of itself, to be aimless would be very stressful. I need to know I am accountable for interactions with others- that I have ideas, support, practical skills to contribute to the people in my community. Even my bit of garden is shared with others. But time is elusive and working on my garden is based on reality, not my desires.

I took advantage of the Annual Plant Sale that is a much anticipated feature every spring at Kendal. It started formally at 7:30 a.m. on Friday. At 7:15 the hallway where the plants were on display was already jam packed with people clutching their plants, eagerly waiting to pay for them. “Who says when it is officially 7:30?” someone asked. The rest of us laughed but soon enough, money began changing hands and the crowds continued all day as the tables emptied out. The next day there were a very few left, and I scored three more outdoor plants, half priced, which were the last to be sought after.

Other folks helpfully carted off my plants for me to the concrete patio off of the lounge area of my section of the Care Center. The door is locked from the outside, with a sound alarm, preventing anyone with dementia disappearing outdoors. That was a necessity established years before the beautiful new dementia unit was built where there is now a lovely enclosed courtyard for safe access to the outoodors. The patio door near me, however, remains locked. My helpers and I had to navigate a circuitous route through various hallways to get to the outside door closest to the patio where I can store my gardening tools and plants until I get to them. From there, my garden patch is only about 15 feet away, over the grass. It is fairly uneven ground beneath its deceptively smooth grass cover. Pushing my rollator over the bumps carrying plants, my kneeling gardening bench, my hand tools and then watering cans, required many trips to and from the patio.

I have been told that the soil here is heavy wet clay. It should have been no surprise that it was, in fact, black tarry lumps that I encountered as I went to prepare the nearest portion of my patch. Because the perennials I bought were thinnings from other people’s gardens (at a very fair price), I figured they were used to this soil for bedding, and so far, do seem to be adapting fairly well. The surprise came in working the next section that I tackled for transplanting some daisies.

Kendal had planted five low spreading juniper bushes beneath my windows, two of which are happy and thriving. One had died completely and I had Facilities rip it out. As I dug around with my used but hardy, newly purchased trowel, I encountered a rock. A large rock as big around as my arm…no a round vein of compressed gold colored clay. It was like cement even though the soggy malleable clay around it was very wet. This lump had absorbed not a drop of water. A single large dandelion root had pushed it’s way through a tiny section of this stuff; an admirable accomplishment given I couldn’t chink off even a chip with my trowel. Maybe I will place potted flowers to stand on top of this root killing area.

Yesterday, while chatting with my PT, he told me that the next county over was once known as the “Sandstone Capital of the World”. Oh. I also found out that I had sprained some muscles compensating for my weakness. My back was sore but resilient enough to be OK. My ankles are swollen from navigating the uneven terrain. I am humbled that I can garden at all. The act of pushing and kneeling, digging and nurturing, are strong motivators for me. I have not completed my efforts yet, but unlike the dandelion root, I will not succeed by forcing my way through sandstone. I am relearning patience as I regain mobility and curb my insistence to DO more. After 30 years, I see my willfulness reappearing as I emerge from a more contemplative life. My ankles and plants smile, as they patiently wait with me.

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Perennials

Diary 4/19/19

Last year at this time, I was still recovering from the outpouring of love and and intensity around Richard’s memorial. Gradually my focus turned towards leaving Bearsville, the home of twenty five years of our lives, of his death, and of my childhood since I was 5 years old. His death chapel/living room was filled with boxes of our old life. Every day was an invitation to dispose of what was left after the first go round of auction-able items. Some decisions were easy and clear cut. After Richard’s family and our friends had chosen a few of his nicer clothes, and after we gave away any of his useful work-clothes and boots (and tools, tools, tools) to men he had worked with over the years, all of his other clothing went to a charity organization in our nearby small city. I imagine someone wearing his barely used suit to a special occasion. Or his various coats for the many seasons endured in Catskill Mountain weather, walking around on other people’s bodies. A few of my own dressy dresses also went to that good place. How many weddings would I attend in the very near future? Would antique styles be back in fashion fifteen years from now as grandchildren graduated and got married? At the time, my body was already in rough shape and I couldn’t imagine traveling anywhere, anyway.

Looking back, I can see I made both solid and irrational choices based on “widow mind”. There is a reason that you shouldn’t make any big decisions for a year after losing your partner. Grief renders your executive thinking into unrecognizable mush. The hospice team said,“ It’s perfectly normal to feel crazy in your grief.” Crazy is when you can’t see for yourself that you are not entirely rational. It seemed perfectly reasonable to let go of some things I now wish I still possessed. I only knew if I was to live in one room at this unknown place called Kendal, I probably would live like a nun. A renunciate’s life appealed to me at the time. I had already lost all of my best beloved earthly delights- my husband, my home, and my health. I was more than halfway there. My daughters firmly kept me here and were so dearly supportive of wherever I needed to go and however I deemed best to get there.

At the time, I couldn’t have known that the brutal wounding of my heart broke me open in marvelous ways. Letting go of what was my life, for better and for worse, yielded a reemerging hunger for new life. Not the life I knew before, but the life that was yet in its infancy when I first arrived at Kendal. The reshaping of my identity as Judi took surprising turns. Living in a community with its established celebrations and excellent vehicles for creative expression brought out a dormant fount of my own need to write more songs, poems and essays; even to choreograph a dance. It has been a revelation to see the offerings that have sprouted through me. I saw a need to nurture simply being in the midst of this very actively doing group of people and now I lead weekly meditation groups. They are small but we are fed by our partnership in silence.

This chapter of my life released me from being a wife. Ten thousand decisions ,always undertaken with two of us in mind, fell to me alone. I had been with Richard since I was sixteen. I barely had time to see “me” as an independent person before becoming a “we.”. Waking up to myself is a gift I have been given and I do not take it lightly. I am more dedicated to being alive as fully as I can be. That nun has gratefully shed her robes and entered into the world wearing colors and styles that are much younger than her peers at Kendal. I am more my own age than ever before. My physical compromises pointed me to a necessary inner life earlier than others in my late sixties bracket. I am grateful for the depth of my spiritual explorations: they sustain the me that I am and they abide as my overriding passion.

I am fortunate that I can also kick up my worldly heels at the same time. My body has been re gifted with more stamina to engage. I have a small garden outside my windows that calls me to enduring fertility, nurturance, and flowering. I am going to buy composted soil this weekend to prepare for new perennials I will soon plant. I need to kneel down, get dirty, and be responsible for their colorful lives.

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Whose Dance Is It Anyway?

Diary 4/16/19

So much has happened since my cervical stenosis was relieved through surgery. I still have pain and weakness from pinched nerves in my lower back that is due to “mild “stenosis and bone slippage at L4-5. I saw my spine doctor just before I flew to NY last Thursday evening. The good news is that he said he didn’t think the discomfort would get any worse than it is now. I can live with it as I have been for a long time. Actually I can’t truly summon what it would be like to be totally pain free. As we age, most of us identify with many aches and twinges we never had before. I am not at all alone in this. The doctors would not operate again for at least another year. We’ll see if recovering atrophied muscles in my back might stabilize my spine. I am working on them to do just that.

My butterfly dance is in the digital “can”. I wish I could post the low resolution version of it here but since the photographer used gorgeous copyright footage of butterflies for the credits, I cannot. Originally, he was going to superimpose them over us dancing. The piece turned out to be compelling enough to stand on its own legs. Well, on Martha’s legs and on the legs of my “emerging from cocoon” chair where I am sitting throughout the five minute piece. The manifestation of an idea into a film has been a delightful process. It is a tribute to Kendal and all that it offers, that I could so easily collaborate to create this. Whenever it comes out, I can at least post the link for Kendal’s two minute promo version of the highlights.

The other minor miracle is that I flew to NY for a whirlwind weekend to attend my friend Phyllis’s eightieth birthday party. The whole first day was about seeing people who would not be there. They were so kind to drive in to see me. I wished I had time to see more folks but it was too much to do any more than I did. The next day was all about being with my two darling daughters and saving my energy for the evening celebration which was terrific fun and deeply moving. I basked in the well deserved love that Phyllis’s family and friends showered her with.

Emilia drove us back to the airport early Sunday morning and there ensued a tangled travel story. I will not add to the detailed repertoire of airport woes we all can trot out. It was actually weather related as there was “extreme fog” in Manhattan that morning. Driving into the city was eerie- you couldn’t see the top of the bridge overhead and only the very tops of the tallest buildings emerged from the gray mass before us. We had fortunately changed our flight to an earlier departure and it turned out to be the ONLY flight that wasn’t eventually cancelled. The last scheduled flight to Cleveland left at 5:00 P.M. After three very sore hours of sitting before our plane finally departed, I can’t imagine how I would have made it if I had to spent the entire day in that most uncomfortable airport. I returned to a local Ohio tornado warning, but no wicked witches were killed at Kendal on Sunday evening.

The point is that I did it at all and, yes, it was extremely fatiguing, but not devastating to my body. It means I can occasionally go to see Marion in upstate NY and not have it all on her to come see her family in OH. Of course, I had Emilia to buffer everything- I could not have done it without her. But to spread my wings even this much was an unsuspected possibility two months ago.

I have been pondering all month. How do we arrive at this exact point of time? Would I have created that dance if someone hadn’t years ago recorded that particular piece of music for Richard on a CD? Did it begin when I first read Chuang-Tzu’s Taoist writings in my twenties? Or when I danced to my mother’s guitar playing as a toddler as that one cute photo attests to? How did I end up here at Kendal? All of our hundreds of seemingly random choices conspired to bring us to this hour of this day in this circumstance. Eldering offers us the time to reflect on how we chose any number of threads to weave the tapestries of our lives. How did it all transpire? Whose dance is it anyway?

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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.