Room 37

In reviewing some of my past posts, I have mentioned the context of our personal dramas playing out against the backdrop of the national and international stages. I will include my personal drama that began two weeks ago and is now very slowly abating. I should be a lot better in another 6 weeks or so. I’lll keep you posted….Judi Bachrach 6/22/22                          Room 37

I fell inside of my room using my rollator to cross an area rug, an act that I had accomplished safely many, many times before. I fell backwards as is my wont, always on my left haunch from years of neurological compromise on that whole side. At first, I got back up and even took the time to clean my-handmade-by-Tibetans-in-Dharmsala rug as my container of yogurt and fruit salad had spilled off my rollator and onto its’ red corner. Aghast at the mess, I successfully cleaned it up, and made a new batch of food to bring to my lunch meeting. I sat through that only feeling a little sore as is usual after a fall. Then I sat through a lovely memorial for an hour. And then the pain kicked in. Sharp acute nerve zingers that were not at all usual.

By dinnertime, I suspected I may have a fracture in my lumbar or sacral area. I knew unless I got it checked out, I would fret. Not that anything special is done about it- but I have a need to understand what is happening in my always changing body issues. I asked an IL friend if she would drive me to the local Mercy Alan hospital so I wouldn’t have to pay for an ambulance. We were shown to a private (too hot) ER room to wait. We saw a kind male nurse who took my information and said he would set up a CAT scan for me to verify any damage.

In about two hours I got the scan. It was painful maneuvering into a wheelchair and on and off the exam table and onto the CAT platform. But I did it and the scan is quick and easy and then more waiting until the radiologist read it. Finally, we heard that there was no sign of fracture and the hardware for my fused L4-5 vertebrae was alright as well. Both answers were a relief and four hours after we had arrived, we got back into the car after breathing the soft moist air of the evening. It was only a little cooler than inside the room, but the air was fresher for not being inside of the ER. A brave boy with a broken arm had cried and went home with a cast shortly before we left. Profuse thanks to my friend for hanging with me for such a long wait. And then…

The next day my body was in more pain. The pain medication they gave me at the hospital is only slightly above Ibuprofen levels and I had refused the steroids they also offered me because of a past negative experience. Usually, steroids make you feel that you are up to any challenge and can conquer the world as it benignly reduces inflammation. But I had had three days of IV steroids for an MS exacerbation years ago. I had a historic abreaction- my MS weakness had scooped me out like an empty paper bag. The steroids made me typically talkative, hungry, and red-faced, but also FURIOUS. I was an angry empty paper bag. I wouldn’t let my husband help me over a curb when we went to the high school graduation of a friend’s daughter. I turned and irrationally yelled out, “Don’t you dare touch me,” which was more than slightly embarrassing as we were both known as psychotherapists in this crowd. Oh well. So, I was reluctant to take the steroids again. Even though we produce our own natural steroids, taking it in a concentrated dosage directly reduces inflammation and can be used in conjunction with antibiotics and other drugs very effectively.

The reputation of the local hospital is that it is not that of a tightly run ship. In the morning, as I

was in more pain than the day before, my nurses suggested I get to the hospital in Elyria for an MRI. I have had many MRI’s in my life to see if my MS had produced any new lesions. It hasn’t for many years, but my latest neurologist of course, had me lie in the loud knocking, honking chamber for a whole series from head to pelvis not long ago. This one would be specific to just my lumbar region and wouldn’t take very long at all. An ambulance took me there as I didn’t think I could handle sitting up in a car and anyway I would not want to have anyone wait with me again for another unknown length of time.

Good decision. What a busy place the Elyria ER is. I was shown into a curtained room pretty quickly and nurses, registrars, and attendants came and went for about 2 hours before a doctor appeared. She asked good questions and realized I wasn’t an easy read due to past neurological issues and operations for stenosis both in my neck and lower back. She suggested an MRI to which I said yes, and this is was why I had come. I was then rolled out of the room on the hospital cot and placed in the hallway. For six more hours.

A sea of busy people surrounded me. From doctors to nurses, attendants to janitors, everyone had a job to do rushing back and forth, socializing on the run- planning a party, describing the last patient, and then over the loudspeaker- FULL TRAUMA IN ER, repeated three times right over my head where I had been parked. Faster chatter of “Car vs. motorcycle,” and another said, “Actually it was a motorcycle that ran into a car.” Soon a man was wheeled by me and he was saying,” I was just driving along when this 15-year-old girl on a motorcycle run into me…” He was bleeding around his arms but was clearly coherent. A short calm of activity before the next storm included a question asked of one another by some attendants. “What bottom feeder in the ocean would you be?” “A shrimp, well, not a lobster…,”and more answers of obscure creatures from those that knew their oceanic bottom feeders.

Another trauma announcement. “57-year-old man, some drinking, fell on the kitchen floor and is totally unresponsive.” Ambulance drivers arrive, unload and scoot out of the way. Soon loud garbled angry ranting was heard, so I presumed the man was now very responsive. A nurse running by commenting to her friend, “The wife smelled of alcohol, too.” A son was heard to say- “They wasn’t drinking much, ‘cause I only saw two cans…”

In another curtained area a diabetic elderly father was lovingly visited by his adult children all day. “Well, dad,” the son said, “the truck was only $500.00 a month for four years but he ain’t telling it like it is. Gotta be at least 8 years. Ya know he ain’t good with numbers.” His father agreed and there were many truck comparisons discussed for quite a while until the son had to go back to work. A kiss followed by,” Love you, dad. “Love you, too, son.” An ebullient daughter arrived next. She worked elsewhere in the hospital and described in detail her father’s morning to his doctor, until the time that her dad had called her after she had left for work and said he didn’t have the energy to pick up the remote to the TV. As a loving caretaker she made sure the nurses and docs had the full picture of what he had and hadn’t done to bring on this sudden weak spell.

Later in the afternoon, (I considered him a kind of an invisible friend of mine as the hours ticked

by) I heard a doctor scold him for his sips of soda and two doughnuts that he ate yesterday. Protests and some muttering about his daughter, but my friend was good natured about it all. It was a tight knit family that supported him. I was glad for him.

My legs were so weak that I could not make it to a restroom and use it by myself. I snagged a passing nurse and asked to use a bedpan. Maybe 45 minutes later a really lovely nurse that was appropriately named Summer (it was the first day of summer) came to my rescue. Since I was right out in the hallway, where could she safely roll my wide cot without bumping into all of the other wide carts, laundry bins, ambulance cots, and wheelchairs to give me some privacy?  Aha! A plastic sheeted hallway that was under renovation.

We could hear workmen inside the translucent covering, but urgency overrode modesty. Summer was professional, discreet and a really good driver of hospital carts. I made it safely back to my wall space which further demonstrated her parallel parking skills. I was now famished having only had a small salad before I was whooshed away from Kendal at around 2:00. I mentioned to several people rushing by that I needed something, anything, as I had a hunger headache and was feeling faint which is a trick since I had been lying down the whole time. “I’ll get your nurse, I am not your nurse, not just now…”

A nurse did come by to prick my finger to see if I was diabetic. I said, no, I am just very hungry. “Just checking and see, your number is good,” she threw over her shoulder as I held the ball of cotton over my bleeding fingertip. And then another trauma patient was admitted with “brain activity” later spoken of as a stroke. I saw the woman in question wheeled by and she couldn’t answer any questions and could not squeeze a loved one’s hand. OK, a hunger headache will not be the death of me.

All of a sudden a transport woman appeared by my cot announcing, “Hi, I’m Fran. I am to take you to the MRI now.”

“Great”, I said, pushing away a fantasy of eating, well… anything by then. It was around 6:00. Fran told me that my wall space was called room 37. Good to know but it had taken her a while to find it. She actually got me into a wheelchair despite my screeches of pain and told me the MRI guys were great and if I wasn’t wearing any metal I probably wouldn’t have to put on a gown. Good again, as transferring had been painful and undressing and dressing seemed an impossible task.

Down to the bottom of the hospital where all the mysterious radiology arts are performed, Fran deposited me in the bare waiting room. One cheerful chatty man came out after he and his partner had been discussing the merits of the rock music that their current patient had chosen to listen to. They didn’t like it as much as the Hungarian folk music an earlier client had asked for. Ah, the bounty of the internet through earphones. He asked me what music I wanted and from previous MRI experiences I said I’ll just take earplugs. He earnestly suggested, “How about ocean sounds?” I said, “OK, yes, ocean sounds were fine.” He was glad I agreed.

 I used the wait for my turn to move my upper body after lying around all day. The guy’s partner

peeked around the corner and said, “Wheelchair Tai Chi. Cool.” I did not disabuse him of my coolness as drained and in pain as I was. They were both indeed nice guys.

Finally, I somehow crawled up onto the MRI bed, got a bolster under my knees, and lovely thick padded headphones. I was handed my call button and slid into an apparently brand new “Siemans Healthineer” MRI machine. It was as spacious as a tube could be and the glide in was ultra smooth. The ocean roared and gurgled in my ears and the powerful magnetic noises were as minimal as this machine could ever be. 25 minutes later I was rolled out, a star patient who did not move, and the pictures were fine. Next up the was the wait for a radiologist to read them. No idea when that would be as I have always been told after this kind of photo shoot.

A different transporter came for me and to return me to room 37.  By this time, I was determined to eat something. I had looked longingly at the snack machines as we whizzed by them when we headed up in the elevator. We arrived upstairs in the middle of the shift change. Smells of dinners were just cruel, and someone had baked a cake for the surgical residents for some occasion. “And what do you guys do when you are not on call?” Some flirting, some cake, and then the sea of talking people dispersed and it was quiet again. My time for demanding food had come. Wait, was that my very own nurse still on duty? It was!

I said loudly, “Sorry to bother you, but I have been here for a very long time and I am starving.” The nurse took pity on me. Usually a healthy vegetarian, I immediately devoured the sliced turkey on plain white bread but skipped the can of Sprite and pretzels she had brought me. That sandwich was enough to quell my pounding head. Uh Oh. I needed to use a bedpan again. I saw my nurse rushing away and I said, “Sorry, but now I have to use a bedpan.” She said, “You keep saying sorry, but I’m not feeling it.” She said it with a very slight smirk which was Ok as long as she provided me with the means to relieve myself. She found a privacy screen to surround my cot and that was enough for me, and at this point, who cared? Not me and surely not all of these official body mechanics swarming around room 37.

At about 9:00 a new doc arrived and the privacy screen was long gone. He said, “Good news, the radiologist saw no fractures and your fusion hardware is fine. We will put you on steroids and the previous script of Toradol should help with the pain. I will work on your discharge papers.” I now accepted the steroids gratefully however they may change my personality. I had to have some relief from the inflammatory pain. I had a shot of my painkiller (stronger than taking it orally) and swallowed the steroids.

½ hour later, the papers were deposited at the end of my cot. When my nurse flitted by she saw them and said. “Good, you can go home now.”

“But how? I came by ambulance.”

“Well, we will call you an Uber.”

“I said, look at me. I can’t sit up in a car.”

“Isn’t there someone you can call ‘cause waiting for an ambulance takes a long time.”

“I have a daughter who lives in Lakewood but she is exhausted from her non-sleeping baby. And I can’t get into and sit up in a car.”

Another sigh from the nurse. She came back a minute later saying, “I always feel bad for people

who have to use an ambulance. They said they might be here any time from 11:00pm until midnight.”

I blanched, but what choice did I have? In another quiet moment I looked over at the woman in the nursing station who had been manning the phones all day on her very long shift. I told her that I thought she was a whiz and a wonder to be so organized with fielding doctors, administrators and anxious relatives all day. She thanked me and another man came in and asked for some papers. She indicated they were on the table over there. He said something about that being sloppy. The woman shook her head and pointed at me. “Uh unh. According to her, I am very organized,” and gave me a wink.

Thankfully, the ambulance arrived to load me up on their gurney at 10:30. Goodbye ER room 37. I was so grateful to be on my way home. The SCC (Stephen’s Care Center) night staff welcomed me home and due to steroids, I was able to actually shuffle with my rollator to painfully but successfully to use the bathroom on my own with intense care. Wow! In the morning, still feeling the help of steroids (no anger in sight) I participated in the Olympic event of a shower and got dressed and fixed breakfast verrrrry carefully. (I only scored a 2, but hey, it was the Olympics.) Satisfied with accomplishing a few normal human activities, I went to bed. After 3 hours of lying around I got up to use the john, and…my legs collapsed and down I went, directly on the same haunch. Bad immediate pain. My call button didn’t work! I crawled onto the toilet, relieved myself somehow and pulled the call button cord on the wall above my head.

The sense of strength I had enjoyed was gone again. I now had to have two people lift me on and off a commode. I am not able to get out of my bed on my own. I have to ask for every little thing I need and am so grateful I am attended to by someone who calls me by name and isn’t rushing anywhere. After a day of misery adjusting to the sudden loss of all independence and unabated pain as the steroids wore off, I woke up this morning with a steroid afterglow.  This time I called on my nurses to do my morning ablutions as I will not misread the temporary relief of strength to attempt standing on my own until my legs can obey a standing order again.

Last night the head nurse came in and said a new MRI report indicated a possible small fracture in my sacrum was found. I can tell you that from my own Goddess-like senses, that yes, I knew I have a fracture or otherwise I would not have lost the capacity of bearing weight in my legs. And the acute sharp pain? That is a new pain for me, and a fracture is the only thing that makes sense. There is no other treatment except for time to heal it and as sitting and standing depends on a sacrum, I won’t be doing more than short supervised experiments of those actions as bone and muscles heal of their own accord. Isn’t that amazing? The body wants to heal and it shall.

And to end with a small miracle, my older daughter came for a visit outside the ambulance entrance here today with my 6-month-old grandson. He can’t come inside as he cannot wear a facemask. I transferred to a wheelchair with only slight pain in my left knee which had gotten torqued from my second fall. I sat for a full 15 minutes of non-stop talking with my daughter and singing baby songs to his smiling face with two brand new teeth to show me in return.

Slowly but surely my recovery is in sight. And my 2-and-1/2-year-old grandson who was napping at home thought I needed a piece of cheesecake that he told me on the phone that he had liked “very much, very much”. My daughter also brought me a scarf my older grandson had picked out from Spain where they had visited last month. The final healing food was two chocolate chip cookies that I had seen him make last night on FaceTime with his mother. Watching him contain himself from eating chips out of the dough was a hoot. I now will check to see if my cookies still contain any chips. Little rascal.

I am glad to be back in the SCC in room 602.

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.

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.

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.

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.

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.

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.

Illness and Nurturing

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.

Movement and Stillness

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/

Happy New Year

Diary 1/2/19

2019 is here. Whether you celebrated that fact or not, the new calendar year has begun. We have officially agreed that our planet is starting a new cycle of 365 days. Our birthdays are a more personal 365 day kickoff with best wishes and many happy returns of the day (with hope it was not an unhappy day). Time is invisible and yet it rules our daily lives.

As I have written before, the Greeks named the God of Time, Kronos, which we spell Chronos; from which we derive the words, chronology, chronicle, chronic, synchronous, etc. This god was a not exactly a nice entity in that he consumed his children, but he did have a grandson named Kairos. Kairos represents an entirely different sense of time, or actually, ‘no time.’ Kairos represents NOW, in which our sense of past and future is subsumed. He appears not as a moment in linear time, he just is; timeless.

Jesus used the word kairos as meaning “in God’s appointed time,” which is unbounded and unlimited by human thought. Hippocrates used kairos to mean “the right use of treatment at the right time by which healing occurs”, using intuition, not just the application of the science of his time. As a culture defined by space and time, we agree that time marches on in a linear fashion from the past, through the now point, and beyond into the infinite future. It is difficult to contemplate any other way of existence.

For me, as I delve into Silence, I experience the foundation of being in Kairos. There is no split between Kronos and Kairos; they more and more appear to me as one and the same. That is, my world- bound sense of time is created out of ‘no time’. In that way, they are not separate at all. This amazing universe baffles scientists as they have not yet pinpointed the reality of matter. The more quantum physicists name smaller and smaller molecules that comprise an atom, the more it appears they don’t actually exist as ‘things’, only as energy. We have known for a while that the observer affects whether we see a molecule as a particle or a wave. Niels Bohr, a Nobel prize winner in physics, said, “If quantum mechanics hasn’t primarily shocked you, you haven’t understood it yet. Everything we call real is made up of things that cannot be regarded as real.”

R.C. Henry, a professor of physics and anatomy at Johns Hopkins University said, “ The Universe begins to look more like a great thought rather than like a great machine. Mind no longer appears to be an accidental intruder into the realm of matter. Get over it, and accept the inarguable conclusion. The universe is immaterial- mental and spiritual.”

My own explorations in questing deeper are heartened by knowing that centuries of mystics are affirmed by modern scientists. By consenting beliefs, humans have largely ignored the ‘inarguable conclusion’ and insist that time and space are the inalterable foundations of our lives. Many believe in a singular god that a created it just that way. Scientists ignore what does not fit into their predetermined assumptions. The inexplicable mysteries and gaps are plugged in with the idea we just have to keep investigating everything from dark matter to the placebo effect until we find proof of what we have decided, must be so. This flies in the face of most scientific inquiry. Asking deeper questions threatens too much of life as we know it, rendering ‘getting over it’ very uncomfortable. That singular entity of God is also assigned responsibility for mysteries because His ways are unknowable. For me, an unknowable, limitless god is a religious name for awareness or consciousness.

It seems that time is, and is not. As I join my elders here at Kendal we all find that time seems more and more illusory. And we still pay our taxes ‘on time’. Aging naturally affords a slowing down of activity and invites more being. My meditation classes here are slowly expanding with people who find support for the benign process of the dissolution of who they were, for how their identities of ‘doing’ keep downshifting. They are atheists, Christians, Jews, Quakers, and a few Buddhists. We sit together, invoking stillness. We are finding, each in our own way, the taste of inherent love, peace, creativity, and quiet joy in plumbing Silence, a path to the effervescent foundation of being. Kairotic awareness does not shift and change. It is for me a refuge; an endless plenum of still spaciousness in the chaotic splendor of daily life.