Written August 13, 2023. At Kansas City, Missouri.
I was recently engaged in a deep conversation with a good friend. The conversation wandered to a discussion of their loved one who had passed a few years ago. I was aware that theirs had been a close relationship yet tinged with some minor regrets. I asked, “Do you still feel any regrets over what you might have done differently for them?”
“Yes, I suppose that I still do.” To which I responded, “When do you think you will grant yourself resolution?” (Or is it absolution?)
“Maybe never” came the too quick response. Clearly, my friend had grown comfortable with the small regret still held.
I found myself wondering if there is anything positive in holding a regret and not granting oneself resolution.
It occurs to me that with resolution comes closure, an end to the unfinished business, time to move on. Holding on to a regret may be one away of not letting go and holding the departed close in one’s thoughts and feelings.
For those “tuning in” for the first time my previous posts recap what brought me to this point:
I did not come to the decision to undergo this procedure easily. I announced it to my wife in an open letter published as I was hiking in Spain last year. Here is a link to that letter:
The day before my scheduled surgery I wrote a post that was both a conclusion to our travels in England and my pre-surgery update. Little did I know how prophetic the title to that piece was to be:
July 17th was my appointment to activate the controller that had been implanted in my chest on June 16th. 3 hours were set aside in the University of Kansas neurology clinic for the Neurology DBS Coordinator to work through identifying the setting that would give maximum relief from my life-long essential tremors yet avoid needless side-effects.
On July 18th I met with the neurosurgeon, Jennifer Chang, MD for a detailed post-operative examination and discussion of my condition.
The appointment on the 17th was with Alyvia Elliott, RN, BSN, the Neurology DBS Coordinator, and took every bit of the 3 hours that had been scheduled. She methodically explored various settings. Some of the settings evoked tingling in my right hand and right side of my tongue. Others caused my speech to thicken. None seemed to impact my gait. Alyvia successfully found at least 2 settings which gave me the ability to hold a full glass of water in my right hand and bring it to my lips without shaking its contents onto the three of us. Mind you, THAT is an AMAZING accomplishment in my world and something I have not been able to do for more than 50 of my 71 years.
Unfortunately, that is not the end of that story. The physical impact of the repeated charging of the brain implant was exhausting. Moreover, the anxiety that I experienced weeks earlier was slowly building over the course of the appointment and threatened to again become “crushing”. I could feel the air slowly escape the room and leave me to figuratively suffocate.
We took a break. Ms. Elliott was concerned and suggested we suspend further efforts. At her recommendation I took a walk with Christine to regain my center. It helped, but I was shaken. She would be discussing in detail the results with my neurosurgeon and neurologists.
On July 18th Dr. Chang met with me and Christine. She allowed that a longer delay for the activation of my DBS controller had been considered due to the brain bleed, however it was thought that since the bleed had resolved and my residual symptoms were minimal it was appropriate to proceed along the original schedule.
I had remarked to Alyvia Elliott on the 17th and to Dr. Chang on the 18th that I was already experiencing a major improvement of my tremors, post-surgery and post brain bleed. The doctor posited that a “honeymoon period” of post-surgical tremor reduction is common. It is a temporary result of the minimal ablation to the thalamus that results from the insertion of the non-activated electrical stimulator in the brain. However, those benefits would have usually disappeared by now.
She further theorized that the additional impact of the brain bleed in the thalamus had extended and enhanced this effect, much as ablation through Focused Ultrasound might. She believes that the significant tremor reduction I am experiencing is still temporary. I am scheduled to see her again in September for another follow-up. For now, activation of the DBS unit is on hold pending the elimination of the last residual symptoms of the brain bleed. These consist of slight numbness on the right side of my tongue, and an occasional slurring of a word, which is barely noticeable even to my wife.
She also hypothesized that my anxiety might not relate to the brain bleed, but rather is a manifestation of my subconscious fears of the procedure and the complications that I have experienced. This is a possibility that I now recognize. She suggests that prior to an appointment to again activate the DBS controller I take a dose of the antianxiety medication prescribed on June 14th. I have not used the medication over the last 2 weeks, but I find her suggestion to be spot-on.
So… I have been so focused on the “dark cloud” of the post-surgery complications that I have failed to appreciate the “silver lining” benefits that I have already experienced, whether they are temporary or long term.
The things that I have truly come to appreciate are: The kind thoughts, words, and prayers from my many friends both here and abroad; The helpful and attentive professionalism of the physicians and staff at KU Medical Center; The love and caring of my children, grandchildren… And most of all my wife of 46 years, Christine.
Peace Everyone. Pete
PS. I am increasingly more comfortable out in public and engaging in selective social activities. I am now cleared to resume my exercise routine which consists of yoga, stationary cycling, weight training, and walking 5 miles a day on average. Communication is vastly improved, and I again appreciate in advance the thoughts, wishes, and prayers of my friends and family. I hope all will understand that I cannot directly respond to each of you. A general “Thank You” will still have to do for now. Pete
On June 2nd, I underwent DBS surgery at the University of Kansas Medical Center. My recovery went amazingly well, until it didn’t. On June 7th Christine was rushing me back to the hospital. I was suffering all the classic symptoms of a stroke.
But I’m getting ahead of myself.
For those “tuning in” for the first time here is a recap of what brought me to this point:
I did not come to the decision to undergo this procedure easily. I announced it to my wife in an open letter published as I was hiking in Spain last year. Here is a link to that letter:
The day before my scheduled surgery I wrote a post that was both a conclusion to our travels in England and my pre-surgery update. Little did I know how prophetic the title to that piece was to be:
The big event began the morning of June 2nd when I reported at 5:45 a.m. for Deep Brain Stimulation surgery (DBS). Neurosurgeon, Jennifer Chang, MD, would bore a small hole (about the size of coin) through the left upper area of my skull. My head would be immobilized while she inserts a tiny electrical implant into the left thalamus of my brain.
All was quiet in the pre surgery waiting room. Pre surgical prep went smoothly. I was relaxed and perhaps even confident. Some brief testing established a baseline against which my tremors could be judged during the surgery. I attempted to draw a straight line, a spiral, and legibly sign my name. “Attempt” aptly describes the effort.
Under anesthesia my head was securely immobilized, and the actual insertion of the DBS device was under way. At a point in the process I was brought to consciousness. I briefly struggled against my head restraint until my thoughts cleared and I drew focus upon the surgical staff. The tiny emitter which was now centered in the thalamus of my brain was activated.
Various settings were tried until the doctor was satisfied. I was asked to again draw some straight lines, a spiral, and legibly sign my name. Even in the foggy state of my recollection I was amazed that there were no tremors! The doctor reported to my wife and daughter that I had every reason to anticipate an excellent, tremor free, outcome. Post-Op recovery was made all the more tolerable by my nurse.
I spent the night in the hospital for observation. Pain was manageable. The surgical site was not pretty, but hair does grow back. I was discharged from the hospital the following day.
With the doctor’s instructions that I was to significantly limit my activities, I began the process of recuperation. Tylenol was all that I needed to manage the pain. The most inconvenient thing was being unable to wash my hair for the first five days. All was going remarkably well, or so I thought.
On the afternoon of June 7th, I began experiencing confusion, numbness and tingling on the right side of my face, and an inability to make my right hand respond to my intentions. I was rapidly losing the ability to speak. I did not need words to communicate my distress to Christine. In a few minutes I was in the car and she was rushing me back to the hospital. Fortunately, it’s only about a 10-minute drive. It would have taken longer for us to wait for an ambulance.
The emergency room appeared at capacity; however, staff quickly assessed my need for immediate attention. I was admitted quickly, and shortly thereafter I underwent a CAT scan. I was not suffering from a stroke, although the symptoms mimicked one. Instead, I was experiencing a brain bleed. This is a rare complication and more so in that it occurred days after the surgery. I remained in the hospital overnight and a second CAT scan confirmed that I was stable. The prognosis for complete recovery was excellent, but it would be a matter of weeks for that to occur. In the meantime, the second surgery remained scheduled for June 16th.
Whether a byproduct of the brain bleed or acute situational anxiety, I was in a panic. I have never suffered anxiety at such a level as this. I was prescribed Xanax which did bring some relief from the overwhelming feeling of doom that surrounded me.
On June 16th the controller was inserted into my chest and wires were routed from the original surgical site down my neck to the controller. This was an outpatient procedure. The controller is scheduled to be activated on July 17th.
My speech has mostly returned. I still have some difficulty finding words and clearly articulating those words. There is some residual slurring. Initially, it was a challenge to walk around the block. I am up to about two miles every morning and I no longer drag my right foot. Hiking across England just a few months ago seems like a distant dream.
I am still prone to the occasional moments of anxiety. Fortunately, it is nothing like what I initially experienced. I am no longer dependent upon Xanax for relief. I have lost 12 pounds as the result of a loss of appetite. I would have much rather lost that weight through healthy eating and exercise!
If there is a “silver lining” to the storm clouds of this experience it is a deeper appreciation for the assistance and patience of my wife, Christine. I cannot imagine these last few weeks without her care.
A second silver lining can perhaps be found in the realization of how fragile our abilities are. Writing this post has taken at least twice as long as it would have in the past. I have a newfound appreciation and empathy for those who suffer from anxiety and stroke. The anxiety is not related to rational considerations. It is vague, undefinable, and yet crushing.
A couple of years ago a lifelong friend suffered a stroke. He tried to explain how his thoughts could not be brought into words. In this too I have a newfound appreciation. For days after I suffered the brain bleed, I could think concepts, I could see the concepts, and understand the concepts. Try as I might, I could not communicate the concepts. It is a feeling both frustrating and helpless. Here again my wife Christine displayed a gift of understanding. Rather than put words into my mouth, she would patiently wait for me to do my best to explain what it was that I was trying to say.
As I said in my prior post: “The likelihood of the “unthinkable” occurring is less than 1%. However, this is major surgery and unlike my arm, which is an arm, or my leg, which is a leg, my brain is the essence of me.”
Christine and I have had a real wake up call. We have experienced a glimpse into disability that we were not prepared for.
Peace Everyone. Pete
PS. I am not yet entirely comfortable out in public or engaging in social activities. Communication continues to be difficult, but nothing like it was a couple of weeks ago. I appreciate in advance the thoughts, wishes, and prayers of my friends and family. I hope all will understand that I cannot yet engage in deep conversations. “Thank You” will just have to do for now.
Yesterday a good friend reminded me that I had not written a final post from our seven weeks in England. As you will see, my mind has been on other things. Before I explain further here is a brief recap of our May 10th return to the United States:
Our final night in Manchester was spent at the Radisson Blu Hotel located in Manchester’s International Airport. It was pleasant enough, but we were desperately eager to be on a plane heading west. We ditched tourism that night in favor of room service. When the time arrived to check-in for our flight we received notification that online check-in was not available to us. This created some anxiety.
It turned out that this was nothing more than a requirement that we present our international travel documents in person. However, not knowing this at the time, we arrived especially early the next morning at the Virgin Atlantic desk. To our relief check-in went smoothly, and then on impulse I asked if there was any possibility to secure an upgrade to first class seats. The answer was YES! “How much?” I asked. The sum was quite reasonable to these travel weary souls. I forked over my credit card. As first-class passengers we were entitled to relax in the Virgin Atlantic Airway lounge prior to takeoff, food and drinks included.
The only remaining stress was the timing between our arrival at JFK airport in New York and the departure flight for Kansas City. According to the flight itineraries we had less than an hour to make it through customs and board the final flight home. We were told it was a virtual impossibility and we were likely going to be spending the night in New York.
The flight across the Atlantic was elegant and we were pampered by the delightful attendants. Real food, real China, real cutlery, and best of all real booze. Could it get any better than that?
YES! Our flight landed an hour ahead of schedule! What was more, as holders of Global Entry passes, we were able to casually walk by the near endless serpentine line of humanity at passport control and thanks to facial recognition we virtually walked straight through to the terminal to pick up our bags and re-deposit them on the other side of Customs. We made it to our next flight with time to spare.
As we approached Kansas City black storm clouds loomed in the distance. There was the staccato strobe of lightning strikes that were cloud to cloud and cloud to ground. The pilot aborted his first approach to the runway and circled a few times before attempting a second landing. On his second approach he got closer to the ground, but a sudden gust caused the plane to bank sharply. The pilot hit the gas, put the plane’s nose skyward, and retracted the landing gear.
The third time was the charm… sort of. It was again a rough approach. As the plane touched down it was again struck by the gusting winds and bounced two or three times hard on the tarmac, skidding sideways before finally being secure on the ground. Among the passengers there was a communal “gasp” followed by the silence of relief and then applause. More good luck, we were almost home.
It was at least four days before my sleep cycle was restored, just in time for the crush of reality and the next “adventure” to begin.
Between May 16th and 30th I had appointments with a dermatologist, an audiologist, an ophthalmologist, and my general practice physician. These were all routine checkups along with my annual physical. Each of these appointments went well, but it looks like hearing aids may be in my future. I now have proof that I do not intentionally and selectively ignore my wife.
At Christine’s insistence we made time for family pictures.
I have not yet mentioned the two most important medical appointments: On May 17th I spent the better part of two hours meeting with staff at the University of Kansas Medical Center for my final pre-surgery work-up. One after the other I met with personnel from anesthesiology, pharmacology, and surgery. The big event is tomorrow, (June 2nd). I will report at 5:45 a.m. for Deep Brain Stimulation surgery (DBS). Neurosurgeon, Jennifer Chang, MD, will bore a small hole (about the size of coin) through the left upper area of my skull. My head will be immobilized while she inserts a tiny electrical implant into the thalamus of my brain.
Image from Wikipedia
She will then run wires under my skin and down to my chest where in two weeks she will surgically implant a controller (neurostimulator), attaching it to the wires.
Image from Boston Scientific
Much of the first procedure, lasting between 4 and 6 hours, will be done while I am awake.
Image from Wikipedia
It is hoped that this procedure on the left hemisphere of my brain will reduce or eliminate the life-long tremors that I experience in my right hand and arm. These tremors have become progressively worse with age and are now significantly impacting my quality of life. Later in the year I will decide whether to undergo the procedure on the right side of my brain.
I did not come to the decision to undergo this procedure easily. I announced it to my wife in an open letter published as I was hiking in Spain last year. Here is a link to that letter:
I greatly appreciate the kind words and the expressions of thoughts and prayers that I have received in anticipation of tomorrow. A candle has even been lit by a dear friend and her mother on my behalf in a small church in Germany.
The likelihood of the “unthinkable” occurring is less than 1%. However, this is major surgery and unlike my arm, which is an arm, or my leg, which is a leg, my brain is the essence of me. Christine and I have had “the talk”, and we will likely have it again tonight. My life of 71 years has been a blessing and borrowing from the lyrics of the song, “My Way”:
“My friends, I’ll say it clear. I’ll state my case, of which I’m certain. I’ve lived a life that’s full, I traveled each and every highway. And more, much more than this, I did it my way. Regrets, I’ve had a few, but then again, too few to mention. I did what I had to do and saw it through without exemption. I planned each charted course, each careful step along the byway. And more, much more than this… I did it my way.”
Before I begin, I hope you will honor the memory of two dear friends who each drew life’s last breath yesterday. They are mentioned in my postscript.
Today began (literally) as a walk in the park. By day’s end I had counted nearly 12 miles and 32,000 steps.
Last night’s weather report predicted a 90% chance of showers throughout the day. At breakfast there was a steady drizzle but by the time that I set foot on the path the rain had stopped. It did not resume until I had reached my destination.
Not more than minutes from the start a gentleman strode to my side and began providing me with information on the history of the surrounding area. Stephen is a retiree who walks a lengthy circle route three days a week. He enjoys company and sharing pride in his city. He encouraged me to join him on a brief detour where we approached the bank of the river Eden and a Stonehenge-like structure.
Each of these monoliths is of a different stone found in the area. Each displays a carved explanation of their respective origins. Stephen bemoaned that the display is not better known or appreciated. I certainly appreciated Stephen.
The recent rains and the overcast skies brought the green of the fields into eye popping vibrance.
These saplings will one day be an impenetrable hedge dividing the fields.
The paths, roads, and fields better favored walking than on my first walking day, but there were exceptions.
Today I encountered four other people walking “the wall”.
Joe and Julie are a couple from Bend Oregon. We spent a mile visiting and soon learned that we shared the same end-of-day destination, the Old Vicarage Brewery bed and breakfast. More on that in a bit.
The other two were young men who were laden like pack mules as they struggled up the path.
There were the occasional encounters with dog walkers. This hound pranced and danced circles around me dearly yearning for me to find a ball for him to chase.
Other livestock and wildlife included sheep, goats, swans, and horses.
As I stopped to snap the picture of these horses in a field one turned head-on to me and began a slow approach. I stood stock still, my anxiety rising. Was he “friend or foe”? He continued toward me until softly giving me a head butt, soliciting pats and scratches on his forehead and behind his ears. Priceless.
The vistas and views included everything from grand estates to “glamping pods”.
There were churches, and of course I stopped.
Christine had transported to our final destination, the Old Vicarage Brewery, by taxi. She was able to track me through our iPhone “find me“ applications. Just as I turned the lane for the final 100 feet she was standing there before me, arms open wide.
The brewery is a bed-and-breakfast with two amazing suites in the old caretakers cottage.
Christine looking out the window of our suite
Owners, Graham and Charlotte renovated the buildings in 2018. Graham is an accomplished brewer, to which I can now personally attest.
Shortly after I arrived, Joe and Julie joined us for drinks and later for dinner, courtesy of the Brewery.
The Old Vicarage Brewery’s two rooms are booked solid throughout the hiking season. We are incredibly fortunate to have successfully made this reservation.
Today included the first visible evidence of Hadrian’s Wall and the related defensive fortifications. Here the central flat area is what would have been the base of the wall. To the left is the Vallum (ditch) situated on the north side of the wall. The depression on the right further enhanced the apparent height of the wall. The grassy area on the right was an where the Romans quarried stone for the wall’s construction.
Tomorrow I press on 8 miles to Gilsland. It is probable that there will be a detour that will add a mile or two to that distance.
Peace Everyone. Pete
P.S. yesterday I lost two dear friends. Jason Christensen and I met in 2010. We were among 12 bicyclists who rode 5100 miles across the United States as part of an initiative on behalf of Catholic Charities to draw attention to the crisis of poverty in the United States.
We were accompanied by four support drivers, Christine among them. Jason was a deeply spiritual man, a powerful bicyclist, and a devoted father. He and I enjoyed friendly competition throughout the ride and an enduring friendship for the rest of his life. Pancreatic cancer ended his life at 53.
My dear cousin, Samuel “Nelson“ Elliott, passed suddenly and unexpectedly at the age of 67. He was a pillar in his West Virginia community, a revered high school teacher and coach. His passion was such that he chose to forego retirement and continued in his profession, literally to the day that he died.
Nelson was prominent in his church community, freely giving of his time to those in need. He was a model husband and father. I can not imagine the depth of pain that his family, siblings, and 95 year old mother are now experiencing.
I hope that both of these very good men have found eternal peace and look down with love upon us.
