Saying goodbye

This is Jubilee. I don’t remember where I found him, or even why I bought him in the first place. But, he became one of the most valuable teacher’s aides I ever had. You see, Jubilee introduced all my youngest students to the most basic aspect of music – the steady beat. He would already be dancing with the beat as new classes of kindergarteners arrived in my music room for their weekly 45 minute music lesson. As the children joined in to the movement, the foundations were laid for years of making and enjoying music. Jubilee, turns out, is a very smart monkey!

“How?” I often wondered., “How could such a simple, quiet fellow totally capture an entire class full of wiggling giggling students? He just seemed to know what they would enjoy. And he loved changing outfits to fit the mood and style of the season. His favorite, of course, was Halloween. To match the sixty some spiders that inhabited the music room during the entire month of October, he dressed as the Spider Web!

Those were some of my most favorite days of life as an elementary music teacher. Leaving that job for disability reasons was one of the toughest things I ever had to do. It’s been nearly 9 years since I carried the last box of teaching things to my car …and I still miss being there!

But, life goes on. And with increasing age there is the growing necessity to let go of stuff. LOTS of stuff! Tonight, it is Jubilee’s turn. I rummaged through my over-stuffed closet to find his extra clothing’ I packed several companion puppets and an animated version of Jubilee (used to teach the idea of harmony, duets, etc in class) in a large canvas bag. Last in was Jubilee, but not before a huge hug , a sneeze, a vigorous shake to dislodge the dust, and eyes full of tears at the idea of letting him go.

Jubilee isn’t retiring just yet. He’s moving in with a whole family of musicians. The Mom and at least one of the daughters are music teachers, still busy with the routines of working in the classroom. A consultation with them earlier this week led me to the realization that Jubilee can again have a role teaching music! Just not with me. So, with heavy heart, yet with hope for him in a new home, I will let him go. But the transfer needs to happen soon…or else I might renege on this whole idea.

Tracee and Alyssa, treat him with love and joy. I promise. He will bring the same back to you!

Posted in Parkinson's Disease | 1 Comment

Careful What You Wish For…

We have lived in south central Virginia/piedmont North Carolina for nearly 39 years.  When we first moved into this area, a trip back “home” to East Tennessee included an arduous trek up a two-lane, wiggly-twisty, steeply graded mountain pass. The view from Lovers Leap at the top of the mountain always seemed to make the hard driving worth the effort. Unless, of course, one got stuck behind a hapless truck driver, his vehicle heavily loaded, laboring up the treacherous slope at a snail’s pace.

The return trip could be equally adventurous, especially if one failed to leave early enough to avoid that area after dark.   “Pea soup fog” was the norm, and I often wondered how many times our car could roll if we missed a curve. Many a night, we crept down that nightmarish road, heads hanging out of windows as we desperately tried to see the white line that marked our lane!

Needless to say, we rejoiced when the newspaper  reported plans to four lane that highway along the entire southern border of the state. Construction began, of course, with the easiest sections in the east, near the cost. Once that section of road work was finished, we could make the six hour trip to my in-laws near the beach in a record four hours.  (I confess that I was not enamored with this turn of events …my in-laws were from a different planet than I, so these efforts were largely lost on me!)

So … I waited impatiently for the final four lanes that would replace the treacherous, slow moving menace that separated  me from my family in Tennessee.  Ever so gradually, sections of the highway were finished, and our travel time dropped from 4+ hours to 3.5 hours. But as time marched on, I finally resigned myself to the reality that the four lanes wouldn’t be complete before we died or moved away from this area!

Fast forward to 2022. After many months of pandemic-restricted travel and other life crises, we  recently were able to make  a trip back to Tennessee. I was eager to drive the first leg of the journey; I love driving in the mountains.  The scenic road up past Lovers Leap became one of my favorites years ago. It was one of our escape routes when we needed a few hours away. Interestingly, the tediousness of the climb never was a bother when  we went to the mountains to relax.

Now, there are a few things I have witnessed with true horror during my 70 years:  The destruction  of the nation of Ukraine. Challenger’s explosion.  A jet flying into the north tower. The subsequent fall of two towers.  The January 6  raid on our Capitol.  And now…the Rape of the mountains.  Road work signs gave warning at least two miles ahead. But nothing prepared us for the chaotic scene, the unbelievable destruction,  more than half of the mountain tops totally obliterated! We watched as giant earth-movers scudded along, beetle-like, where dense forests stood only a few weeks ago, sucking up huge swaths of dirt, carving  deep obscene wounds, exposing uncounted square miles of virgin soil. A nightmarish scene now seared forever into my memory.

I wanted to scream obscenities at the workmen out there that day, to blame them for the violation. Fuming, I drove on past. And as the ugliness receded, an awful realization took its place. The fault for this travesty rested not on the workmen, but on the me! On those of us who for years have complained about the inconvenience of the unimproved highway. A good hard look at myself revealed that my own selfishness and impatience, is often at the root of such “progress.”

I have lived a remarkably privileged life, enjoying the advances in technology that make our lives easier.  Today’s technology puts tremendous power at our very fingertips. We can literally move mountains, see every detail inside a living being, heal once-deadly diseases. Generally, if  we can dream it, we can do it.  I am haunted by the all-too-true reality that absolute power corrupts absolutely. With humility, I realize that truth applies not just to politicians, but also to those of us with access to the powers of modern computers. My privileged lifestyle brings with it hidden costs, expenses in terms of the sacrifices of other people and the environment. I am more convinced than ever that I must be careful what I wish for, because my wishes can become….no! Most likely, WILL become a reality. And, I suspect, the cost of those realities just may be far more expensive than any of us can grasp.

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Aging

“I’m NOT looking for a new job!” I declared as I tossed an un-revised copy of my resume on Gerry Robinson’s desk. “I’m quite happy where I am! The only reason I am here is because this IS where my church membership is, and you just happen to have an open staff position that fits what I can do.” Ten minutes later, I walked out of his office with a Manila envelope. Stuffed with music and audition requirements. And a date for an audition for Organist of Starling Avenue Baptist Church. It was March of 1991.

Fast forward three months to our students’ Recital Day. Gerry was there as parent of one of my students. As the reception began after the recital, Gerry took me aside (I honestly thought he was trying to find a way to gently tell me that the job had been given to one of the other two more-experienced ladies.). He had the very rare experience of leaving me absolutely speechless with the statement that the job was mine if I wanted it!

Thus began one of the most remarkable relationships of my life. We worked together for more than eighteen and a half years. He learned to read me like a book! And I usually knew how to read where he was going in choir rehearsals and worship. He just knew things…like the Sunday morning my grandmother died . Determined as I was to get through morning worship before telling anyone, he came to the choir loft before worship and asked point blank,”What in the world is going on with you today?” He knew when my back was beginning to bother me in rehearsals, and replaced the piano bench with a piano chair. Next was adding a back to the organ bench. He was a master of surprises, throwing a huge party for my 40th birthday, and orchestrating an incredible worship service honoring my ministry for my 50th birthday. He and Pastor David were the grease that set the wheels in motion for my full Ordination to the Ministry.

So many significant memories are bubbling to the surface! But one more really special one…Gerry introduced me to the joys of Carl Orff’s music education methods…which led to the most remarkable job in my career: Music Specialist at Leaksville-Spray Elementary.

So, why am I writing about all of this today? Ever the master of surprise, Gerry died very suddenly a year ago today. Although he and his wonderful wife, Betty, had moved on to a church in Richmond, and subsequently retired near the beach in South Carolina, he remained a significant friend and confidant. Losing him left a huge hole in the fabric of my life. I haven’t been able to write a suitable tribute for him. Doing so somehow meant his death was real, and for the longest time, I couldn’t face that reality. But now, besides the anniversary of his death, I am facing another milestone….my seventieth birthday is only a few weeks away. October 17 was our birthday! Gerry was older than I, but sharing a birthday with him was as fitting as it was fun.

Someone said recently that getting old is NOT for wimps! At first, I was certain the impetus for that statement was the inexorable decline of the aging human body.! But losing one’s parents and siblings and friends is far more difficult! To date, I have no easy answers, no pithy statements, no idea what to do with this dilemma. The only thing I can do is keep living. And be grateful for this day. Carpe deum.

Posted in Parkinson's Disease | 2 Comments

BFF Pat

If you are really blessed, there is the possibility that someone may enter your life and somehow, before you are even fully aware, become a close friend, a confidant, a pal who will go with you on an adventure at the drop of the proverbial hat. Such BFFs are few and far between. They are treasures that make life richer. Often closer than one’s own siblings, these are the friends who get us through the thick and thin places in life, who make the mundane glorious, who challenge us to be our best selves, and who love us even when we aren’t!

Some years back, while I was still Organist at our church, I heard that a retired musician had visited in our service one Sunday. Her reputation as a fine musician and teacher preceded her, and I freaked at the idea that someone “out there” might know when I made mistakes in the music during worship services. I had not met this woman…only knew of her and her accomplishments through the community grapevine. However, her career and mine were parallel tracks, involving elementary school music teaching and church music. She was an outstanding musician who had had a highly successful career in the Washington DC arena. So, when she decided to visit our church, I somehow felt threatened.

To my continued dismay, there came Sunday when this lady officially joined our church! And then, she joined our choir!!   Imagine my chagrin when one Pentecost Sunday, she invited my husband and I to join her for dinner following the service.  We were already committed that day and promised to find another time.  It was only a few days later that I discovered that that particular Sunday was also her birthday….

And so, it began. The planned Sunday dinners evolved into spur-of-the-moment meals out.  Any day of the week.  Any time of the day.  She loves many of the things I love, and we made hilarious memories, stopping at antique stores on our way to singing retreats and doctor’s appointments.  I learned her patterns of living so well that one Sunday when she did not show up to sing in the choir, and didn’t even call to let me know of her absence, I knew something was terribly wrong.  Surely enough, a mad dash to her home at the end of the worship service found her in agony after a fall.

She has been at the hospital for most of my surgeries, brought dish gardens to cheer me during long days of recuperation. She sends text messages nearly every day, knows my extended family quite well, and prays for all of us without ceasing. We have even made trips to see each of our extended families in the same area of East Tennessee! My life is so much richer because I can honestly claim I have a real best friend.

This special person in my life set out years ago to be my friend. Before I even knew her, she decided she liked my music making. She was musician and minister enough to understand that she could see into my very soul through the music I performed! For me, she is a rock, an example, a role model. She is my best friend, and I love her. Her name is Pat McKinster. Today, June 8, is her birthday. If you know her, send a card, or make a phone call. To her…and to your own best friend.

Posted in Parkinson's Disease | 1 Comment

Let the Chips Fall…

Perhaps I should research a bit to see where this idiom began…but as I think about it literally, I am reminded of those crispy, incredibly crunchy, kettle baked things that are all flavor and calories without a smidge of nutritional value.  You know, those things that will drive us to ravage the cupboards as we look for a bag in the middle of the night, even driving out to the store at 1:00 a.m. in our flannels to get more if we are out!  Addictive?  Yes!  Messy?? Undoubtedly!!  Sometimes I blame it on Parkinson’s, but it is seemingly impossible for me to eat even a single chip without little bits of it cascading down my frontside, into chair and couch crevices, and onto the floor.  Somehow, the bits that make it to the floor don’t stay there very long. (We are a dog family, after all.)

Have you ever left a bag of chips open on the counter overnight?  And then returned to them the following morning? How could anything so scrumptious the night before be so revolting the next morning? And remember those little pieces in the crevices of last night’s perch?  Quick!  Get the vacuum before temptation runs amok!!  Those awful little things will not only make the calories adhere more quickly, but their limp stale-ty will leave you gasping for water, quite possibly causing you to swear off these gems of iniquity permanently!

Now I am aware that the chips referred to may be those little pieces that fly when one is sawing or chopping wood.  Or perhaps the chips are my progeny who imitate me so willingly (NOT!!). But there is a thread here that haunts me. I will be 70 before the next new year arrives, and I am haunted by things that are changing around me.  And IN me! We all know that our bodies somehow magically know when we hit that 60’s decade, and these bodies just love to remind us that they are tired and are ready for a break.  If you refuse to take it easy, you most certainly will land in the hospital, paying dearly for your transgressions.  If you are fortunate indeed, you might get some sort of temporary reprieve that allows you to mend your ways.  Maybe you can even erase a bit of the damage you have done in previous years eating those chips and indulging in all the other accouterments of American life. 

One oddity, though, is that if you take it too easy, you can still get into trouble. Why else would that fancy schmancy watch on your arm tell you to stand up every hour! For crying in the sink! Those activity rings literally have my husband running in circles before the thing resets for a new day at midnight!!  Doesn’t feel much different from the frantic late-night chips or fries run!!

So, what’s a retired senior citizen to do?  It’s too late to let the proverbial chips fall where they may…that ship has already sailed! We are dinosaurs at earlier, younger ages than ever before.  The world is changing more rapidly than we can absorb, and little bits of our existence are falling like crumbs around us.  Institutions and rituals that have been anchors for our generation have fallen apart, disappeared as surely as the crumbs on our floors.  Our homes are crammed with “stuff” that nobody wants anymore; nobody even remembers where or who it came from…nor does anyone even care that no one knows or remembers!  Even the wood chips that flew about during our seasoning as young adults no longer seem relevant .

These days, when one enters a deli sandwich shop, he/she will always have a choice to make about what chips to eat with said sandwich. The variety is staggering, but the premise is the same as it’s been for generations:  salty, crispy, crunchy, addicting goodness that tempts us beyond our good senses.  And those chips off the old block?  Literally, the wood chips fall to the ground, biodegrade, and start the cycle of life all over again. Figuratively, the generation that we bred and raised (much like every generation before us) is doing just fine as they take over our world.  It feels like a different place. Strange music. Wild hair, Mixed relationships. Odd fashions.  Even odder foods.  Minimalism. Techy stuff that rivals Star Trek of the 1970’s…..or Dick Tracy of the 1930’s ….or Henry Ford of the 1890’s…

However, with my 70-year perspective, I see a thread, unbroken for generations, a premise as real as the day I was born:  Love your neighbors as you love yourself. Love your enemies. Do good to those who hate you.  Practice unexpected kindness.

 “…And the world will be a better place.

For me. For you. You just wait and see!
Take a good look around, and if you’re f
eeling down,

Put a little love in your heart!”

                                                                                                –   Jackie DeShannon. 1941 –

 

 

 

 

 

 

 

 

 

 

 

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ELEPHANT

Many folks have asked us, since we retired, how in the world we stayed in the local church ministry so long (45+ years).  It all goes back to a decision we made after our second“crash and burn” experience in just over 6 years of full time ministry.  We were young, with a still very sick baby, when the first church we were called to serve pulled the rug out from under us.  One day, Ed had a full time job, and the next, we were homeless!  We had to borrow money to rent a truck to get our stuff 500 miles north to a storage unit near my parents’ home in East Tennessee.  Unbeknownst to us that first traumatic week, we were pregnant with our second child.  In fact, Joel’s name is a testament to God’s grace and mercy during those days. Jo-el means the Lord is God. God is the “I AM”…God is who God says he is!! We figured if God could get us out of that mess, then God surely must be all God claimed to be!

We soon moved on to our second church, believing the old adage that if you are thrown by your horse, you should immediately remount.  “Surely,” we thought, “that first church situation was a fluke, and we will get things right the second time around.”  We asked every question we knew to ask, prayed hard, did much soul searching…and believed God’s hand was on that move.  Perhaps God was in that decision, but it didn’t take long for things to go awry!  In a little more than two years, we again found ourselves without a job.  This time, we had two preschoolers, a mortgage, two cars – you get the picture.

At that point, we made the life-changing decision that became one of the “secrets” to our success: Never, ever, put your eggs in one basket again! For us, that meant never again would we commit to a full-time position in one church! So, even though we had originally felt called to be a ministry team, we gave up that vision, and each individually pursued separate church and music careers. Ed served 7 different churches, one school, and taught private piano lessons and tuned pianos for years. Kay served a total of 3 churches, taught in two public schools, and taught private piano for years. For us, this worked, but I will always wonder what might have been possible if we could have used our complementary strengths in one full time situation.

Dear friends, there is an elephant in this room we call “Church.” We rarely speak or even acknowledge that The Elephant is even there, yet it is wreaking havoc on churches everywhere. It is literally destroying good folks who commit themselves to ministry, even going for advance seminary training, often leaving extended families to serve in distant communities. The elephant, in a nutshell, is the serious lack of skilled confrontation and the misunderstanding of anger among both pastors and their parishioners. It would do us well to remember the biblical admonition, “Be angry and sin not!” Sadly, this is one area that is never addressed during professional ministerial training!

I am still haunted by a statement made by one of our seminary professors: “If someone in any of your churches decides they don’t like you, they can and will find a way to get rid of you.” Some folks, it seems, have huge invisible “toes” that unwitting ministers step on without even realizing they are there! Some church folks want to “help” the ministers by offering supposed positive criticism…and gradually undermining not only the morale but also the ministry of those called into the Ministry. Some folks are power people, used to calling the shots in many of their regular groups. When a new minister doesn’t bend to such power mongering, because he/she senses God’s leading in a different direction, lines are often drawn and the battle begins!

Saddest of all, to me, is the fact that much of this dissension happens behind closed doors, and the vast majority of church members have absolutely no clue that there is something amiss. The identities of the perpetrators is protected, in the name of Christian Professionalism, and they are often allowed to take on the role of bullies who run amok because no one confronts them. When the inevitable explosion occurs, there are a myriad of hurt feelings with folks left angry, disillusioned, disgusted, frustrated, incredulous that such a thing could be happening at their church!

I’m curious ( and seeking affirmation I suppose…): How many of my FB friends have been through this trauma, either as clergy or as lay church members?  How did you responds?  Is it still affecting you today?

My hope is that as we begin to talk about this very serious issue, we will begin to find solutions. This epidemic has become as devastating to local churches and their ministers as the current pandemic is to our world. God help us! We have to find a way to stop it!!

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INVISIBLE

Isolation

I have been ruminating on an issue that has affected me deeply in recent years. In fact, I have been working on this particular blog entry for more than two months! The advent of the Pandemic exacerbated the problem of no longer being able to speak. Even though the worst of the pandemic over, at least for now, I am haunted by the personal devastation that enforced isolation brought on us all. The isolation was akin to what happens to those of us with speech disabilities. We “Non-Verbals” are not magicians who can make ourselves disappear at will, but we certainly do “vanish” in the middle of a group when our voice can no longer be heard. Unfortunately, in this fast-paced world, non-verbals literally disappear, as conversation flows around them, often burying them in a ton of verbiage to which they cannot respond. Somehow, it no longer seems to matter that nonverbals are ordinary human beings..with coherent thoughts and feelings, personal histories, and stories to tell! Trust me! They desperately want to be part of the conversation!. Being speechless…a Non-verbal if you will…is a horrible, lonely, deadly fate that leaves the individual totally isolated, even though he/she may be there in plain sight. I know much about this, because until recently, that person was ME!

Before I go there, however, let me hasten to say that when I lived on the “normal’ side of existence, I was like most people:  uncomfortable when around someone who is disabled, particularly if that person could not speak clearly. I didn’t even realize that I was assuming that the afflicted person was not fully present. That the person’s  brain was  gradually failing to do its job in preserving personhood.  I’m ashamed to say, minister that I am, that it was all too easy to just pat the afflicted, non-verbal person on the back and then walk away (often too quickly).  

I am haunted by the memory of one particular incident when we were attending a reunion. A good friend and colleague from years gone by was tied into her wheel chair so she couldn’t fall out. To even see her face, I had to sit on a chair lower than hers, as her head, too heavy for weakened neck muscles to hold up, was bent permanently towards the floor. Her once-bright eyes were dull, the sparkle of life itself fading slowly away. I noticed nobody at the reunion had stayed beside her for more than a minute or so. I found myself sitting beside her, fumbling for things to say. The voice of this former singer had faded into a barely audible, flat-toned garble, and I struggled to understand what she had to say. I looked around the room at other reunion-comers, selfishly longing to get away to visit with others…to get away from what had become a very uncomfortable interaction….

Even though I knew, at that reunion, that I had been handed the exact same diagnosis as my wheelchair-bound friend, I was determined that I was never going to let  that happen to me!”  And so, I went blithely back to my life, still relatively untouched by the monstrous Parkinson’s diagnosis.  Still unable to acknowledge that I really am at the mercy of this Monster.

Fast forward to 2018.  I knew in the spring that my voice and diction were beginning to fade, my tongue tripping over some sounds as if English were a foreign language.   I went to several voice specialists, actually hoping that all their tests would show something wrong that they could fix.  To no avail…everything inside my face and neck looked absolutely normal!  I was sent to a voice specialist who also had advance degrees in music, very similar to my own training. The articulate speech that  I had relied on so heavily in my profession was slipping away. I was embarrassed, hating  the croaking sounds that issued from my throat. With no hope in sight, I gave up.

I was directing the choir that I had accompanied for years. In rehearsal, they could no longer hear me as I gave musical instruction.  What they could hear was a garbled mess.  They were all too kind to say anything, but the blank looks on their faces gave them away. I felt as if we were all descending into a chaotic world where no one was the leader anymore.  Frustrated and embarrassed, I stepped aside, thrusting the role of director onto my husband, who was already the accompanist for this fine choral group.

The isolation increased. In conversations, any attempts I made to enter into a discussion were not heard, and I was left in the verbal dust, my ideas wasting away in silence.  Virtually everyone quit calling me on the telephone.  Even my sister and best friend resorted more and more to texting.  Those who did make the effort to at least greet me, often turned my discomfiture on themselves with excuses about their aging hearing, dead hearing aid batteries,etc. But I knew the truth…I could no longer communicate audibly.

And so, I descended deeper into the chasm of isolation and loneliness…and invisibility…marginalized by the monster. Our society has done much to help handicapped people (I am very grateful for ramps in sidewalks, for motorized carts in stores, parking spaces near the door, etc.). But, I ruefully discovered, we as a society have done very little for the vocally handicapped!

Seven months ago, my neurologist, working with a Boston Scientific rep, tried a new way of programming my brain implant. Suddenly, without warning, I could speak almost normally!! The effects of the new programming were immediate, This was amazing, just as exciting for family and friends as for me. Some friends even called me on the phone, just to hear the miracle for themselves! I experienced anew the joy and comfort of long conversations with my spouse, of family phone calls, of telling anecdotes while at a dinner with friends…all things that I had taken for granted pre-PD Monister. Also, I experienced a strange form of survivor’s guilt….why was I given this has new chance to speak when so many other Parkinson’s patients are relegated to permanent silence?

Friends, forgive me if I stand on a proverbial soap box for a few minutes.  We have done so well in our accommodations for handicapped individuals…..let’s not overlook the very real problem of not being able to communicate verbally!   I tried various forms of voice enhancement, and discovered that at the very best, each device was more aggravation than help!  In fact the best accommodations  were offered by individuals who took the time to slow down and give extra time and attention to  an encounter with me.  These friends looked me directly in the eye to be certain they were communicating.  They did the intensely hard work of deciphering what I was trying to say. And failing these attempts, a hug (well, given the current pandemic, this could become a fist bump or pat on the shoulder!) was always welcome! Somehow, physical contact has become even more meaningful than ever!

Friends, forgive me when I speak forthrightly. Forgive me when I speak directly to injustices or say things that make folks uncomfortable. I need to make every word count these days, because the gift of communication, of speech, I can no longer take for granted!

Posted in Deep Brain Stimulation (DBS), Disabilities, Parkinson's Disease, Retirement | 1 Comment

Miracle

Some months ago, I wrote a piece about what I can do.  It was written from growing despair as I realized increasing limitations as a Parkinson’s patient…the incessant, inexorable downward spiral as this beast continues to drag me into its clutches.  By focusing on the things that I could still do, I could talk myself out of the doldrums.

Since I wrote that particular a piece, there have been many months of isolation; time has slowed to a crawl as the virus and resultant quarantine, combined with increasingly garbled speech, have basically isolated me from everyone. It has now been a year since I’ve hugged my own children or even touched them! Longer than that since I’ve enjoyed a quiet morning drinking coffee with my sister besides her koi pond. She and I can no longer talk by telephone; my speech is unintelligible and my voice is too soft for her to understand me. And, there has been an inordinate amount of quiet, unstructured time to develop hyper–awareness of the devastation as Parkinson’s continues its rampage through my body. I have felt and seen the end of hope…

Three days ago, I experienced a miracle. The best way to tell you about it is to list the things I can do now that were impossible only three days ago.  (To begin to comprehend the miracle, imagine, if you will, the complete antithesis of each of these):

  • I can now walk almost normally, without my walker!  The cane has become merely a security crutch that I imagine will soon be parked in a dark corner somewhere.
  • I can write a legible note and do a crossword puzzle without my handwritten letters shriveling into a mangled, undecipherable mess – and I can think about what I’m trying to say instead of how to form each letter.
  • Keeping the car steady in the middle of the lane as I drive is now effortless…I almost missed this subtle, but still momentous change!
  • I can hum a recognizable tune as I putter around the house.
  • I can chat with my husband, speaking my thoughts only once, and he can understand what I’m saying!
  • I can speak for myself on the phone, make my own appointments, ask my own questions!
  • I can give Alexa a verbal command, and she can hear AND understand the first time, every time!
  • I can laugh and smile, make jokes…and my voice even has the proper inflection. 
  • I can enter into family or friends zoom meetings and actually be part of the conversations, teasing and bantering…and everyone can understand what I am saying!
  • I can play, at sight, intermediate piano music – for the first time in years!

The only problem with any of this is that my stamina is very limited.  But there is now a reason to look forward to rebuilding. You see, I have been given back some of my life!!

How, in God’s name, did this happen??  Has Parkinson’s been vanquished from my brain? Have I been…healed?!

The Rest of the Story

Six months ago, I had a final visit with my long-time neurologist. He was moving to Miami to become head of a movement disorders clinic.  It was a wonderful move for him, but I was bereft. I left that visit feeling as if I had probably gotten as much benefit from the DBS device in my brain as possible.  From there, I believed, the degenerative aspects of PD would again take over, ravaging what was left of my independence, leaving me invisible in my misery.   In other words, my implanted technology was maxed out, and I was again at the mercy of a relentless degenerative illness.

Three days ago, I went to see a new neurologist. Dr. Siddiqui is a specialist in movement disorders at Wake Forest Baptist. I had only met him once before. He was assisted by a Rep from Boston Scientific (the developers of my implanted brain device). The ensuing hour was spent with me hooked up to the computer as they quietly worked at the keyboard. Occasionally, he would stop and ask me to do some standard neurological testing, most of which I have done hundreds of times before. That day, I knew my coordination was worse than ever. And then, feeling as if someone had “oiled my joints,” the movements were suddenly easier, effortless, coordinated, normal! Mixed with utter surprise was a faint glimmer of hope as I learned that the Boston Scientific scientists did not stop working at the end of the 5-year timed trial. In fact, in the last six months, they have discovered and implemented a new programming technique. Using the already-implanted brain leads, they can see pictures of the brain and the program can predict probable best settings, customized for each individual’s issues!

Oh. My. Goodness!! It’s working!! My body is waking up! Activities that I never thought I would be able to do again are possibilities again. All day, I’ve been singing Amahl’s song just after his lame leg was healed: “Look, Mother! I can sing! I can dance! …” and from Pinoccio, “I’ve got no strings to hold me down. To make me fret or make me frown…”. Hope is tantalizing, and I am intoxicated with ideas of swimming again, playing the piano, walking a mile, talking with my friends for hours on end, playing with my grandkids…

No, this is not “healing” in the true sense of the word, because I still have Parkinson’s. But, as doctors and other scientists learn more about electricity and brain waves, the effects of this illness – it’s degenerative, destructive force – is diminishing. With each passing day, as I find more “little things” that I can do again. I am beginning to dream again about the future. Perhaps PD will not win. Hope is returning, alive and well, to get me through another month at least, and maybe a year. Or more!!

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20 20

Can anything positive be said about this past year?  We as a society have lost so many, so much; we are left in many ways, empty and alone.  There are some relevant things that we don’t often think about. Perhaps the most significant is understanding the humanness of the entire world.  I remember stories and pictures of far distant places and people wearing masks as oddly-named epidemics seemed to decimate a population.  These remote events were worlds away from my situation, and face masks were part of a foreign fashion and culture that were completely alien to me.   In short, I just didn’t relate to those foreign crises at all!  I have been able to go on my blithely-ignorant, white-privileged way, largely ignoring the rest of the world. Until now.

Enter Covid-19.  Months of isolation, a plethora of facemasks, and starvation for physical human contact have brought totally different perspectives.  We are all in this together, from the most isolated homeless individual to the richest socialite living in a lavish pent house.  When one sifts through the many possible layers of existence, at the core of any existence is a “basic” frail human being who can be attacked anytime by a tiny invisible germ than can literally bring said person to the edge of his/her existence. Social standing, titles, wealth, demeanor, personality, life style, charisma, religion, culture…they all mean absolutely nothing to this invader that seems hell-bent on destroying all life as we have known it.

So, here we are, in the midst of the most intense, ritualized holiday season of the year, and we are being told to set aside all family gatherings, all the trappings we tend to pin on this special season. It is excruciatingly painful to not hug the grandchildren, to not travel anywhere, to not have our traditional feast and party crammed into a favorite niece’s home.  

In our family, as in many families around the world, get-togethers are marked by sharing favorite recipes, by using heirloom china handed down from generations before us, by teasing, laughter, and telling well-rehearsed family stories.  All of these rituals remind us of who we are. To not have the rituals this year is unsettling and depressing. Trying to find acceptable substitutes is a seemingly impossible task. Many of us are afraid, frustrated, and angry with what feels like loss of identity. Certainly, we have all felt the loss of freedom to come and go as we please.

How in the world are we surviving?! Physical survival is in jeopardy if one contracts the virus. But the buoyant human spirit that keeps us going in the midst of adversity is also at risk.  Depression rears its ugly head more often these days, as we struggle with interminable hours at home alone, many of us with only ourselves for “company.” We are social beings! We need human contact to maintain sanity!!

All this brings a second thought:  the resiliency of the human spirit – the creativity that so often gets trampled as we stampede ahead – this aspect of being human that is often undervalued or discounted as “childish dreaming.”   There are strong, if subtle indications that creativity is alive and well.  Many of our ways of doing life have changed, and there are those who are adapting.  It took creativity to figure out the order-online / rapid-pick-up system.  Hopefully, curb side pickup will remain as a permanent part of our way of shopping.  “After this is all over,” my husband and I will still make it a point to carry our take-out food to some newly-discovered outdoor picnic locations for a few minutes of peace in the middle of our day.

I’ve given up trying to make these holidays “normal.”  Instead, I am trying to embrace some new ways to commemorate being human.  For example, our older son now calls us several times each week. I had not realized how hungry I am for the sound of his voice, his wry sense of humor, his gutsy laughter.  I love that techies have figured out new ways for us to see each other, even if we are miles apart!

There is no Christmas Tree in our house this year, but 25 years-worth of nutcrackers are on display, sporting face masks, protesting the invisible invasion with their silent decorum.  Gifts are being opened early, with some surprising developments. Our younger son and his family came for Christmas more than a week ago. We ate and opened gifts around the outdoor firepit. The expressions of delight as each one focused on the single gifts for the day gave me time to savor the joy of choosing specific gifts that would please each person.  How often have we rushed through mountains of gifts, all in one Christmas morning frenzy, and missed this savoring?

So, what’s the point?  Although Covic-19 is a major imposition on our life style, a threat to our very existence, all is not lost. Perhaps as we each dig deeper into ourselves, as we are wrapped in the cocoon of a restricted existence, we will become more sensitive to our neighbors, more appreciative of life itself, and maybe, transform into a better existence because of the disasters of this year.

Okay! I admit it! I am weary with trying to make this work.  It’s exhausting, but absolutely necessary, to keep hunting for the positives, else we lose our minds and souls!  So, with a reluctantly grateful heart, I wish each reader a blessed, Merry Christmas!  Be at peace.  We will see each other soon!

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Saying Goodbye

This is Jubilee. I don’t remember where I found him, or even why I bought him in the first place. But, he became one of the most valuable teacher’s aides I ever had. You see, Jubilee introduced all my youngest students to the most basic aspect of music – the steady beat. He would already be dancing with the beat as new classes of kindergarteners arrived in my music room for their weekly 45 minute music lesson. As the children joined in to the movement, the foundations were laid for years of making and enjoying music. Jubilee, turns out, is a very smart monkey!

“How?” I often wondered., “How could such a simple, quiet fellow totally capture an entire class full of wiggling giggling students? He just seemed to know what they would enjoy. And he loved changing outfits to fit the mood and style of the season. His favorite, of course, was Halloween. To match the sixty some spiders that inhabited the music room during the entire month of October, he dressed as the Spider Web!

Those were some of my most favorite days of life as an elementary music teacher. Leaving that job for disability reasons was one of the toughest things I ever had to do. It’s been nearly 9 years since I carried the last box of teaching things to my car …and I still miss being there!

But, life goes on. And with increasing age there is the growing necessity to let go of stuff. LOTS of stuff! Tonight, it is Jubilee’s turn. I rummaged through my over-stuffed closet to find his extra clothing’ I packed several companion puppets and an animated version of Jubilee (used to teach the idea of harmony, duets, etc in class) in a large canvas bag. Last in was Jubilee, but not before a huge hug , a sneeze, a vigorous shake to dislodge the dust, and eyes full of tears at the idea of letting him go.

Tracee and Alyssa, treat him with love and joy. I promise. He will bring the same back to you!

Jubilee isn’t retiring just yet. He’s moving in with a whole family of musicians. The Mom and at least one of the daughters are music teachers, still busy with the routines of working in the classroom. A consultation with them earlier this week led me to the realization that Jubilee can again have a role teaching music! Just not with me. So, with heavy heart, yet with hope for him in a new home, I will let him go. But the transfer needs to happen soon…or else I might renege on this whole idea.

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