Sixty-three days after Alice McCormick passed away in 2020, the Aphasia Network planned its annual couples’ retreat. Because of Covid, they made it a “virtual event.” Aware of Alice’s demise, I was summarily invited as a “surviving widower.”
I accepted the invitation. It would have been stupid to refuse.
Both Alice and I loved the stroke survivors we met and several students-in-training, and I wanted to commiserate with them again. I suspected that seeing them on Zoom might help console me, but the virtual mass communication felt pretty empty.
In one of the sessions, two unfamiliar women in their 20s were chosen randomly to be my student counselors, and I determined I wasn’t going to cry for them. Instead, I looked for something else to focus on, so in desperation I grabbed hold of a page containing proposed chapter titles for my upcoming book. After a few strange-sounding niceties, I pointed to the proposed chapter titles. Chapter 4 stood out.
Typed in was a profane version of the N-word bandied about by white people in the 1950s describing the slum community close to downtown Miami. I knew if I ignored the epithets I heard about N-town, my book would be a fraud. Therefore, I tiptoed uncertainly. (I was denied a plum opportunity early in life because my skin color was too dark. Now that my childhood color has dissipated, I look like any old white man. But memories don’t disappear, so vivid moments from the past were relived in my head before currently residing in my manuscript.)
I read the objectionable word aloud and posed a follow-up question to the two students: “Do you think that’s appropriate?” I read the word again. “Is there another way to describe this?” Since these were university students, I wanted their input. We could work together to find acceptable terminology, right?
All of sudden, their live images disappeared, a blank wall took their place and a supervisor appeared forthwith on my computer monitor castigating me for saying and repeating an offensive word. Perhaps I was stupid. Or Pollyannaish. Or something. Nevertheless, my grief losing Alice was magnified.
This conundrum occurred three years ago. I’m a writer, not a coward, right? So afterward, while struggling to rewrite the harsh chapter title, I came up with a politically correct replacement: “N-town with three syllables.” And today, Chapter 4 has been completely written, rewritten and edited to conform to modern-day sensibilities.
Meanwhile, Portland’s Aphasia Network has risen from the dead. A gathering of old friends and adversaries is looming for a renewed camping experience June 9-11, this time in person at the familiar Methodist facility north of the fishing town of Garibaldi on the Pacific Coast. That’s fine with me. However, in anticipation of revisiting treasured memories, I’m being dragged through mud from the past. Former close friends in the group no longer communicate with me, and I suspect I’m being ostracized.
The Aphasia Network coordinates its camping weekends with Pacific University. This year’s event may be its last, so memories of our interactions are important. I also want to refresh the participants’ memories of Alice. But I don’t want any hint of a scandalous character assassination.
Historically, Pacific University once participated in eradicating Indian cultures, seizing their children to create strict boarding schools to “civilize” the “savages.” The infamous Carlisle School in Pennsylvania is an apt comparison. And Pacific originated in a state whose intent was to be lilywhite, threatening black people to leave its boundaries or face the sting of 39 lashes from a bullwhip in retribution.
Much of the state’s discredited liberal policies stem from an overreaction to its racist past. And that hasn’t changed much. Portland is still the whitest big city in the United States. That’s a fact.
Almost in tears three years ago, I related the hue and cry from my sorry interaction with students to my cousin, Margaret Johnston. She advised, “You will have to find a way to truly describe Oregonians – so open-minded but so un-worldly. So quick to judge and ostracize, while all the time touting to be fiercely liberal. But only as long as you think and act as they see fit.”
Margaret was “right on.” She now lives in Arizona.
In their book, The Coddling of the American Mind, Greg Lukianoff and Jonathan Haidt reveal three false mantras guiding college students today: “Strive to avoid unpleasant experiences at all costs,” “always trust your emotions over reason” and “the world is a black-and-white battle between good people and bad people. There is no middle ground.” With all the money students commit to attending college, the university experience now panders to students and avoids controversy. Period.
Meanwhile, my three-year-plus writer’s narrative is transitioning to the day I met Alice. I remember how on September 24, 2010, Alice draped her long, sinewy arm around me inside Andre’s, a subterranean wine-and-cheese bar inside the Doylestown (PA) Marketplace, and cooed loudly in my ear, “Oh, here you are, dear. I’ve been looking all over for you.”
That’s when I was smitten. And I had it bad. It took 67 years to finally meet the girl I was made to love.
So I’m trying to avoid stupid distractions. Alice sometimes comes alive in my head, and I trust she will guide me.
At least, I hope she will, because this shit is getting old.
I needed some time off to reflect on fast-moving events. And I thank everyone for honoring my period of reflection – and accomplishment.
An event occurred in June that reflects political correctness run amuck, something endemic to the West Coast. If the behavior of some well-meaning proponents of social change cannot recognize we share a common priority – a change in leadership – we could be doomed to four more years of madness.
The spirit inherent in writing a book of merit brings out my Quaker experience of reflection. In the long run, my support of the Aphasia Network shall be constant. Any complaint I have pales in importance to what appears in a book. These are the same sort of compromises our new activist generation needs to learn, or else the winds of change will fail to recognize ideals still thought dear.
I want to recognize Professor John White of Pacific University and speech therapist Jordan Horner for their kind assist in helping me determine the importance of my book’s contents. Also, former University of Oregon professor Melissa Hart oversaw my first three chapters and overall organization. I’m writing the book – finally!
How long can I keep my pedal to the metal? We’ll see.
One more thing: I miss Alice more now than ever.
The photo above reveals my left eye is half-closed, due to a burst blood vessel. Awww!
Above: On the wall behind me is an artist’s impression of a pianist tickling the ivories next to a photo of my father performing in a big band during the 1940s. I once played Mozart for Louis Armstrong.
Once upon a time, I rushed to create new posts each week on this website to increase the number of visitors it receives. The idea was to create anticipation for the book everyone is waiting for.
Well, last week some stupid shit hit the fan, and I’ve been spending a good amount of time and effort wiping it off my psyche. This spurred the realization that each consequential distraction interrupts the focused madness necessary to writing a complete book.
(You can anticipate what’s coming next, right?
Well, congratulations.) This website is going on hiatus for a little while.
Don’t be sad. If you want a further taste of who I am, peruse this website. A tribute to Danawa Buchanan can be found, a cross-country journey with a CHECK ENGINE light may humor you, and how my immigrant father emigrated here cum laude after arriving 101 years ago should comfort subsequent immigrants.
The photo above shows Alice checking her camera before hitting the beach during our first time at Couples Weekend on the Coast under the auspices of the Aphasia Network.
A few weeks ago, I published a Post-It that Alice wrote before she and I engaged in a commitment ceremony. The outdoor setting with a running-water, rock-garden fishpond occupied by spectacular baby koi, a six-foot deep swimming pool and a 12-person-size, screened-in gazebo was made complete by 30 invited guests. Alice planned to feature me as the last man she was ever going to love.
Alice had a rough life, far greater than anything I ever experienced. Each of her children and grandchildren had it tough, too. Comparatively speaking, I was just a babe in the woods.
Perhaps I sensed my innocence in the commitment letter Alice asked I write before our commitment ceremony, deliberately scheduled to occur Sept. 24, 2011, one year beyond the day we met.
Currently, the Aphasia Network is holding its annual Couples Weekend, but, because stroke survivors and care partners are especially at risk during this pandemic, we began meeting this week in a virtual setting using the Internet program Zoom.
Everyone loved Alice, almost as much as she loved them, and the next 10 weeks will emulate the weekend event, the first camp since Alice’s passing. Students, educators, stroke survivors, care partners and staff members are clamoring for details about our love.
I watched an extraordinary video prepared by computer-savvy Mollie Wang, in which she sang and engineered pitch-perfect duets with Professor John White of Pacific University. The second and last song performed, “You’ve Got a Friend,” was written by James Taylor, Alice’s heart throb. At a meaningful moment in the song, an image of Alice appeared, and my heart flowed deeper than expected. Tears filled my eyes.
Today, I ran across the commitment letter I wrote to Alice on August 28, 2011. Shortly after Alice’s passing, I shared Alice’s commitment note here.
Since the Aphasia Network formally started its extended Couples Weekend celebration on Tuesday, the time is perfect to publish the commitment letter I wrote her. After all, it’s only fair, right?
As we witness the last hurrahs from Hurricane Irene’s visit to the Northeast, I recall the time George and I went streaking during South Florida’s version of the hurricane’s namesake in 1999. So much has changed since you became part of my life.
All my worldly possessions are now stored inside your house, a place you insist I call “ours.” My environs are surreal, far beyond any expectations. I feel out of kilter.
So far in life, my expectations as a writer have not borne fruit. In order to cope, I declare myself a musician first, a writer second. Somewhere in the scheme of things is my fallback identity as a limousine driver, bringing in the meager income I contribute.
Why do I try to defend myself from you, as if you are an intruder and not a friend? Have I grown terrified of life, reverting back to the frightened boy depicted in my nightmares?
I decided to write this letter, even without a pat ending. Perhaps I should write more this way using my subconscious, rather than wait until ideas ferment and scream to come out. Anything worth investing into a sit-down exercise at this computer should attempt to glean insights without a glossy finish.
I love you in ways I know little about; I break new ground with every step we take. I can predict nothing beyond tomorrow; is that what scares me?
I don’t know what you see in me; maybe that’s why you love me. Little of it makes sense. Just know I am trying to be true to myself and to our relationship. Everything else seems up for grabs.
After beginning childcare duties on May 15th with the YMCA of Southwest Washington in Longview, Alice McCormick received the following email from the facility’s executive director on June 7th:
The Y’s Rainbow Corner “has some concerns about your communication skills with kids and parents [emphasis added]. Because you are still in the 90-day probationary period, she [the Rainbow Corner’s director] is letting you go because she does not feel like this is a good fit for our members.”
Alice never returned an invitation to speak further to the Y about its decision, so I pressed Alice to forward me the terse communiqué. Once she did so (after two months), I wrote directly to the Y’s executive director who in turn refused comment to me, her life partner, or to anyone other than Alice.
My wife, Alice, can hold a conversation, but lacks the verbal pathways to do so eloquently, which self-explains her recalcitrance to hold a formal conversation with Longview’s YMCA about such an important matter without my participation. Therefore, no further communication is anticipated between us and, accordingly, I spoke with Alice to relate her impressions, and here are some of them.
Inside Longview’s Y
The childcare room in Longview’s YMCA was touted as a “Rainbow Corner,” but painted only with a stark white color. No accompanying artwork, such as that appearing in Doylestown, PA.’s YMCA (where Alice once worked), is part of the color scheme. Half of the children’s toys were, in some way, in a state of disrepair.
The Rainbow Corner’s director expected Alice to continually consort with a mentally challenged co-worker, whom the Y was proactive enough to hire. However, the assignment convinced Alice that her speech aphasia was considered by her superiors as another form of mental incompetence. Not one person volunteered to be Alice’s trainer or a confidante.
I could go on, but Alice and I have no plans to be mean-spirited. But something happened here, and we won’t be silent about it.
Alice excelled in the field of special education and served as a substitute teacher for four years in the Philadelphia School District, no mean feat. She is an elder, an experienced parent who nurtured five children and one grandchild through childhood, teenage angst and later development. These skills remain intact.
Alice’s speech suffered significantly after her stroke in March 2015, and she found out what anyone here who does not speak American English fluently innately knows: She has become a second-class citizen. As I once quoted Hungarian film star Paul Javor in my book, Gulag to Rhapsody: A Survivor’s Story, “The less English you know, the more likely it is that people will spit on you.”
Alice deserved better than what the Y’s mission here exudes. Working with infants and toddlers provided Alice an opportunity to offer attentive caring, a safe atmosphere and love. This mission doesn’t require her to speak much. When wide-eyed children look up at her (because Alice is considerably taller than her peers), they feel love.
The Aphasia Network is our advocate
People with aphasia are not mentally deranged or incompetent. This is plain wrong. The pathways through her brain were interrupted by a stroke and must be rebuilt through years of therapy and practice so she can feel confident to communicate as well as the rest of us. Alice manages me, and I’m not easy.
Two weeks ago, I broke this sad news to over 100 stroke survivors, care partners, occupational and speech therapy students and instructors at our Aphasia Adventure Weekend on the Coast. Now I share it with the readers of this blog.
Today, Alice freelances by occasionally cleaning people’s apartments. She only works for those who treat her (and me) the same way. Unfortunately, Longview’s YMCA does not meet Alice’s standards. The neighbors in our condo association do.
We remain hopeful that an aphasia awareness campaign will open new doors for people who suffer the debilitating effects of a stroke. For survivors and their care partners, more education and interaction with the outside world needs to be done.
As much as I expressed love for Alice when entering our civil ceremony seven years ago, I love her in a deeper way now. All her struggles inspire me to match her courage. Every little thing she does for me behind the scenes gives me an air of organization. Alice’s dedication to my wellbeing is akin to the Portland (Oregon)-based Aphasia Network’s ever-expanding programs.
Yes, we are exceedingly grateful, and our gratitude is only matched by the unmitigated embrace of support offered by our delightful extended family.
You know that feeling that overcomes you when functioning blind? Not literally, but the sensation realized outside one’s comfort zone. Visually, you can approximate the feeling by driving in foggy conditions, where you literally can’t see eight feet in front of you.
In Pennsylvania, I experienced that dysfunctional feeling several times while driving a six-passenger stretch limo, especially on icy roads, climbing the top of a snow-covered hilltop manor’s long driveway, or the disgustingly narrow Washington Crossing bridge during an ice storm, and especially downtown Philly’s jammed South Street during New Year’s Eve. My first trip to the Dakota in Manhattan, where the late John Lennon lived, produced a similar tingling the first time I pulled inside the covered driveway of the famous 72nd Street building.
Anyway, I digressed, as I am wont to do. Alice and I recently moved to Longview, Washington, escaping from Portland, Oregon’s growing pains and rent crisis, accompanied by a reprise of asking what happened to our stuff.
To recap, Alice and I managed some serious downsizing before moving West, so that all our possessions at our two-year Portland location were contained within a 900-square-foot apartment, plus 30 boxes of assorted stuff laid about a dusty, dingy garage.
We already had some heart-stopping moments moving out West and you can read about those here. (Follow succeeding posts in the archive to learn the resolution.)
Preparing for our second move in three years
In looking around the Internet, which is how almost everyone functions in Portland, I came upon a moving company based in Vancouver, Washington, that specified its territory includes Longview and Portland, with nothing else beyond. I put down a $100 deposit, and arranged a moving day for September 27th.
As typical, a plethora of tasks were left to the last minute, so we awoke before the sun did. As the 8 o-clock AM hour began to wane, my phone rang, and the young driver managing our move explained he and his crew would arrive around 9:30. I gave him instructions how to find our apartment, and like clockwork, three strapping young men showed up on time in a 17-foot-long box truck.
The rented garage across the parking lot was summarily emptied. While we carefully moved our respective desktop hard drives and monitors into the Ford Escape (“Betsy”), the crew set upon the entire apartment beginning with the upstairs bedrooms. The queen-sized bed was disassembled, and everything appeared well organized. My fragile, well-used computer hutch was deftly moved outside.
Two flat-screen televisions were wrapped carefully. Our newly purchased extra-long sofa was carried outside by two of the guys with nary a complaint or mishap. As the truck’s contents rose to its top, new rows of stuff utilized its full width. Alice and I were amazed how the guys managed to fit EVERYTHING into a small, contained space.
Nothing more could fit inside the moving truck. While the movers were doing their thing, we toted the computer peripherals into the SUV with the rest of our PCs, nonetheless saving a prime space for Millie inside her cat carrier. Alice packed some odds and ends from the fridge, enabling us to munch upon sustenance during the upcoming 50-mile drive. Amazingly, everything was packed inside our respective vehicles by 12 noon.
Before setting off to our new Longview address, I asked the driver/supervisor of the crew if he was going to drive to Longview using US-30 (St. Helens Road) paralleling the Columbia River, which involves a nearly 1,500-foot ascent and descent over Cornelius Pass, the route we planned to take. He declined, saying the crew requires a lunch break in the Vancouver, Wash. vicinity and that they “probably” would take the I-5 route to Longview.
We said goodbye to the truck, professional crew and 99% of our stuff, as we set out to Longview. I called the carpeting/flooring installer to alert them of our arrival, checking to see if everything was copacetic, only to discover that a problem area in the upstairs bathroom required the crew to work until the midnight hour the previous night.
Arriving in Longview
The carpeting and flooring were in place though, the salesperson assured us, and all was ready for our arrival. However, when we drove up to our newly acquired garage to unload Betsy’s booty, the carpet people were still working.
“Oh crap!” I thought, although a full crew was hastily vacuuming our newly installed carpet, promising apologetically they would finish in half an hour. In anticipation of that deadline met, we unloaded the computers and emptied the car, nervously checking our watches, hoping the movers’ arrival would not be imminent.
“Ask, and ye shall receive.”
A half hour went by. Then an hour had passed. I checked the elapsed time again: an hour and a half!
“Where’s our stuff?” I worried.
Finally, I received a text from the driver: “Got stopped at weight station. Getting inspection done. This time will not count toward your bill.”
“Ah, finally,” I thought, wondering about the station’s location, but relieved to know there was only a slight delay. An hour passed without further word, so I texted the supervisor again, “What is your status now?”
Within a minute, I received a reply. “We are stuck at weight station. There is a problem with our insurance. We are getting it figured out. I will let you know as soon as I know more.”
My heart sank. “What in God’s name?” I mumbled. I wrote back, “Is your truck being impounded?”
“No,” came the reply. “Just can’t leave until the system is updated.”
By this time, several of our new neighbors had gathered around, volunteering to help as much as they could. I looked around and texted, “All our neighbors are hanging about to help us with the move.” I asked for directions to the weigh station, hoping my appearance could smooth a quicker arrival for the truck.
“I intend to drive there and see what I can do,” I wrote.
“One second,” was the answer. “There isn’t much you can do. It’s an issue with our insurance. They messed up somehow and are working to fix the issue.”
Five minutes later came a phone call from the moving company’s female representative, whom I surmised was the moving company’s part-owner, and she revealed the awful truth. Our moving company did not have the proper INTERSTATE insurance paperwork that permitted it to operate a commercial moving business from the State of Oregon to Washington.
The Washington State Police had impounded the truck, refusing further movement into Washington, although its contents belonged to Alice and me. The only way this stalemate could be solved legally, the woman said, was for me to pick up a rental truck, pick up all our cargo, and drive it back personally to our Longview address.
WTF! The owner was asking the impossible. He wanted me, an Uber/Lyft driver at the ripe age of 74, to pick up a U-Haul rental truck large enough to hold our possessions – 20 feet long, but lower in height.
Heading south on Interstate-5
The clock read 4:30 pm as I proceeded to correct this move-it-or-lose-it situation. After one wrong inquiry at a location where I received blank stares, I arrived at the correct rental spot, whereupon I learned that credit card info given to U-Haul turned out to be “not authorized.” I waited around, twiddling my thumbs, until the owner of the moving company, who shall remain nameless, volunteered a different, acceptable credit card that absorbed the $204.29 charge.
Remember what I wrote about the feeling of operating blind as I began this website post? Sure, I had experience with limousines, Lincoln Towncars and driving for Uber and Lyft, but steering a 20-foot-long truck in a manner compatible with other commercial drivers along Interstate 5? Before I was able to realize the full extent of my dread, another “sizable” problem:
“I am stuck in Longview rush hour traffic adding another 10 minutes to my trip,” I texted the moving truck supervisor. “There is a narrow lane that I am coming to, which is only 10 feet wide. Do you think I will have a problem clearing that part of the road?”
No response. The silence was deafening.
I gripped the steering wheel tightly in true white-knuckle fashion, barely clearing the dreaded, offending section to emerge onto the busy interstate highway and drove like I belonged there. Nevertheless, I proceeded watchfully, looking for the weigh station 20 miles southward.
Once I recognized the station on the northbound side south of Exit 16, I turned around at the next exit. I pulled into the offending area where I was met by the same Washington State patrolman who was the bane of our movers’ existence. I identified myself by displaying my Oregon driver’s license.
“Okay, you can drive the truck back after it is loaded,” he ordered, “but only YOU can drive.” He then had me claim our possessions.
Was this a official order by the State of Washington or an invitation to a mishap?
My watch read 6:30 pm, Mount St. Helens was visible in the distance and the Washington State trooper allowed the transfer to commence with one more notable proviso: The contents of the moving truck were not allowed to be unloaded onto the tarmac until reaching the back door of the U-Haul. Everything inside the movers’ truck had to be rearranged, due to the major difference in dimensions of the two trucks. Nevertheless, the moving crew’s supervisor managed to direct the whole shebang in 90 minutes. None of our possessions were left behind, damaged or even dented during the entire ordeal.
The logistics in motion appear as the cover photograph of this post.
The first crew did their part, now it’s my turn
Then came the fun part. I drove a fully loaded 20-foot rental truck – filled with all our possessions from our seasoned lives — onto a frenetically busy interstate highway in the dark of night for a full 45 minutes – past mountainsides and over Washington’s military-green bridges.
As tightly as I gripped the truck before it was loaded, I believe the veins on my wrists were on full display as I steered the truck – which seemed to have L-O-O-S-E steering. I slowed the truck to ridiculous speed at every turn I encountered, until I pulled into the condominium’s driveway in front of our new residence. A new moving crew had been dispatched to greet me, and I noted the time: 8:45 pm.
“Would you mind backing the truck toward your garage door?” the new supervisor asked. I pulled forward about 10 feet, put the truck in reverse and proceeded warily until my new “friend” yelled out, “That’s okay. I’ll take it from here.”
I hit the brake, put the gear shift into PARK, and when I stepped down from the truck’s running board, I saw why he relieved me. I backed up the truck within a foot of the garage door. I could have hit the damned thing!
Whew! I was nearly done. The crew stayed with us, asking where we wanted every item of furniture or box to be placed inside our newly carpeted, sumptuous apartment. The moving crew worked tirelessly and when they were finished – at 11:30 pm – they said goodnight.
No one presented us with a final bill, and nothing more was communicated to us ever again. After 2½ months of silence, it’s safe to assume the final bill was the $100 deposit for the initial contract. After all, in return for my participation, the owner’s wife promised a “substantial” discount for getting the moving truck and crew released from their Washington Weigh-Station impoundment.
I don’t remember how we ate that day. I know I slept like a rock after going to bed at 2 am. Nevertheless, we’re happy in our new condominium, and Alice believes we will never have to move again.
That’s terrific news, because I never, ever want to ask myself, “Where’s our stuff?” again. That shit gets old – fast.
As Alice and I prepare to celebrate Christmas Eve with my cousin Margaret Johnston, here’s a Christmas tale of good fortune and considerable divine providence to share:
On Monday morning, Dec. 12, after having my bladder and prostate removed, I met with surgeon urologist, Dr. Daniel Janoff. When Janoff walked into my patient room, he looked directly at me, beamed and uttered two words summarizing my pathology report: “Completely cured!”
Omigod! Am I hearing correctly? Then, like a proper surgeon, he muttered, “Well, unless something microscopic gets through.”
That’s as good as it gets, and the insurance I bought into by undergoing major surgery seems to be worth this post-procedure pain and rigmarole.
Cancer Affects Everyone Differently
The elation I allow myself to feel adds to the joy of this 2016 holiday season and causes me to count my blessings. How many cancer sufferers endure the diagnosis of a malignant body part without years of heartache, excruciating pain and mind-numbing self-doubt? For many of them, they’re always looking over their shoulder dreading the day when it’s confirmed that cancer has made its way into other vital organs.
On the other hand, what are the ramifications to a cancer patient when he or she loses a reproductive organ?
At an art exhibit opening in Bucks County, I once became attracted to someone related to one of the most famous show-business families in America. We were so instantaneously enraptured that we began making out passionately on the second floor of the Lambertville, NJ gallery next to the Delaware River, in full view of everyone there, and I entreated her to see me again.
Upon calling her for the first time, though, she expressed inconsolable shame at having contracted ovarian cancer, saying she was no longer a real woman because her ovaries were being surgically removed. She asked that I never call her again, and hung up the phone. What horrible expectations some of us have while fighting cancer!
Other friends and relatives have faced the “Big C” diagnosis with far worse implications and over a far-longer period of time. Therefore, it makes sense for me to be stoic about sacrificing certain body parts. After 73 years of life in this state of consciousness, I rationalize that some organs can be regarded as irrelevant. Considering I was diagnosed with “high-grade” cancer – somewhere between Stage 3 and Stage 4 – this was no time to play coy with life choices.
Earlier This Year
My cancer ordeal started in March, after Providence primary care provider, Dr. Mathew Snodgrass, confirmed another in what was a series of urinary tract infections. He referred me to Dr. Janoff, a master urologist/surgeon. Janoff, one of the busiest surgeons I ever met, ordered a CT scan, and in May diagnosed my urinary problems as being caused by bladder cancer.
The wicked carcinoma, he said, was caused by the chemical additives U.S. cigarette manufacturers put into their products to enhance addiction. Throughout life, I always concerned myself with lung cancer. But bladder cancer? No way, I thought!
That’s why I recoil whenever I see anyone smoking a cigarette, and I retreat as far as I can get from the sweet seductive scent of tobacco smoke.
Looking back, I am grateful. My ordeal lasted only nine months. How many other cancer sufferers can say the same? My late uncle underwent years of deteriorating health from Lou Gehrig’s disease. How can I put my health challenges on the same plane as his?
I am one lucky guy.
Janoff recommended that before surgery, I undergo four rounds of chemotherapy, and oncologist Dr. Daniel Gruenberg at Compass Oncology kept an eagle eye on my changing blood work.
Three-and-a-half months of intense chemotherapy – consisting of Cisplatin and Gemzar – followed in July through early October at Compass’s location adjacent to Providence St. Vincent Hospital. When my white blood cell count dropped precipitously in September, an injection targeted my bone marrow to precipitate increased white cell formation. The stratagem – although quite painful days later – worked, enabling me to finish the course of treatment.
The surgery followed, and its results are now a matter of record.
Alice has been my confidante and partner throughout, although she would have preferred to see if cannabis oil alone would cause me to turn the corner. I decided otherwise, and she shares this victory without mollycoddling me through the rehabilitation process.
The future ahead, she declares, lies in writing my own book, and she asks that I focus more on such an effort. She is right, because we cannot continue our lives without seeking some semblance of adequate compensation for my creative work.
But on the eve of another Christmas Day, it’s time to spread some holiday cheer with my personal accomplishment. It’s no accident that Hanukkah begins on Christmas Eve this year so whatever Jewish blood I inherited simultaneously shares season’s greetings with Christianity everywhere.
All photographs on this post, except for ones in which Alice appears, were taken by Alice McCormick. She’s a real talent, if I say so myself.
I once experienced serendipity in 2000 while driving from San Francisco to Ashland, Oregon. What a treat! Every town where I stopped was hosting its own music festival. That’s serendipitous.
My second encounter? Alice and I were chosen to participate in The Aphasia Network’s Couples Retreat weekend with 11 other couples on the Oregon Coast from March 4th through the 6th. But wait, when did I realize Alice’s 72nd birthday would coincide with the glorious finish of this pilot program?
In a bona-fide camp environment, the roaring ocean only a few hundred yards away provided a healing sound experience.
What a concept.
On Sunday morning, Alice received a slice of birthday cake – only one candle atop representing a life brightly burning – and over 50 staff members and students, plus survivors of aphasia and their respective caregivers, sang out Alice’s praises in the time-honored “Happy Birthday to You” refrain.
The meaning of that emotion-packed morning brought tears to many students’ eyes, and I vowed then to salute The Aphasia Network with this website post for giving my dear one the greatest birthday gift of all: unqualified love.
A little history should add perspective to Alice’s birthday weekend. Immediately after Alice McCormick endured her stroke a year ago (March 11, 2015), one of her children wanted to fly out here and size up the situation. Alice feared such a visit could threaten her independence. And as Alice’s caregiver, I am duty-bound to defend her. She manages me very well, so her wishes become my commands.
Many people consider the loss of instant coherent speech to be a sign of incompetency. That’s not true. Yes, aphasia affects the brain, but only the interior pathways. Mature, informed thoughts must blaze new trails to communicate themselves in speech or writing. That’s why Alice’s nonverbal command structure today uses gesture more than ever. Survivors of brain injury must skirt ill-informed behaviors of well-intentioned family members who can turn an agile mind into a vegetable garden.
It’s up to me to keep a protective shield around her. That’s my role as caregiver. (And if there should be any doubt as to how together Alice is, take a careful look at the photos gracing these words of mine. Her talent as a photographer is well on display, with the caveat that students at the Retreat took photos of the two of us together.)
Off to the Coast
After a frenzied bit of packing Friday afternoon, March 4th, I drove the Ford Escape affectionately known as Betsy toward Tillamuck and the rugged Coast beyond. After we turned onto the main Coast throughway, the pavement swept us through an Oregon fishing town perched next to a placid bay. Looking beyond the bay, we could make out ever-building waves of the ocean beyond.
We drove past an inviting lake and my GPS turned us onto an inlet-hugging quiet road toward Edwards Lodge, the assigned gateway where a team of dedicated Aphasia Network professionals welcomed us into a slice of heaven that I now call the Haven.
As soon as we walked inside, two charming students – Tiffany Tu (occupational) and Rachael Furtney (speech) – enthusiastically introduced themselves. These two bright motivated souls were to be our constant companions and seemingly cater to our every whim. Alice may have required a full-blown stroke to have such dedicated overseers, but never mind. These two women were shining beacons reigning over our newly opened lighthouse of life.
Our first evening was filled with introductions, and we oriented ourselves to the lay of the land. Tiffany and Rachael easily located our assigned sleeping bunks in the Herron House; then we gathered back into a nearby dining hall and met key staff officials.
An entertainment program was led off by Savel Sobol, a student who doubles as a nightclub comedian, whose humor captured the audience’s breathless attention. We caroused some with Professor John White, Ph.D., who led the entire group into a rousing sing-along. As the evening wore on, we acknowledged our gratitude to Aphasia Network team leaders Suzanne Gardner and Lisa Bodry who share camp administrative responsibilities, while continuing to be feted by a potpourri of support personnel who kept the good vibes flowing. We were treated like VIPs.
Our trip to the Coast was accompanied by mostly cloudy skies, and an onimous weather forecast called for stormy conditions. To Alice and me, though, the sound of a confused sea with breakers rolling across the adjacent beach was a seething, soothing series of rolling sound. On my side of the bunk beds, I dropped off quickly.
A New Day Breaks
However, Alice did not fall asleep until late into the night, due to a barely-there mattress, and as daybreak unveiled itself, she was unable to rouse herself into consciousness. I meandered off to the Carrier Dining Hall for a sausage-and-pancake breakfast, confided in Tiffany and Rachael, who instantly, merrily concocted a wake-up invitation of steel-cut oatmeal and black coffee to gently prod Alice back to the land of the living.
To keep at ease, other staff members reassured me that Alice was happily regaining her steadfast form, and soon Tiffany and Rachael escorted a beamingly happy McCormick partner into my Saturday morning. Lo and behold, the sun was shining, and we sneaked off to the beach to view the glorious Coast in its active ebb and flow. We were elated to discover partly sunny skies. Could it be possible a beach bonfire was still on the afternoon menu?
Back at Edwards, Professor White led a frank, no-holds-barred discussion unveiling a myriad of tools and toys to reinvigorate sexual communion between couples. Hoo boy, the couple across from us appeared shocked, and subconsciously the power of erotica was building in my libido. I looked at Alice lasciviously.
After a back-to-the-basics macaroni-and-cheese lunch, guitars, percussive instruments and voices gave the beach a hootenanny effect, romantically accompanied by a modest bonfire on the beach with only a few nuisance sprinkles of rain to ignore. Yes, it’s true, more than a few random urges of forbidden pleasure were awakened by the female in my life.
Everything that passed from then on seemed like a blur. I joined other caregivers in the Smith House to compare lifestyles while Alice was spirited off to join other aphasia sufferers whose task was to prepare appetizers for all to share. Wary of any needless weight gain, I sampled a few, but didn’t fill up.
That was wise, because we savored a sumptuous teriyaki chicken dinner at the Sherlock Lodge, while our companion music-makers kept the entire company enthralled.
As I said earlier, romance was already in the air, and when we reached our bunk beds, it overflowed. Some mischievous, but sentimental, elves had strewn rose petals (a la the movie “American Beauty”) in and around our sleeping quarters along with a small bottle of champagne. Oh man, was love in the air.
But a practical look around the confined spaces of our bunk beds sobered up this surfeit of romanticism. If we could twist ourselves around in one particular position, I reasoned, we might be able to enjoy naked pleasures. But at what cost? How would we drive back home if my ardor put us in traction?
Cooler heads prevailed, thank goodness. But on Sunday morning, before we left this Haven, I confessed to all within earshot how susceptible I was to “elves” who inflicted the inspiration of unpracticed acrobatic moves in a noisy enough closed space that certainly would have disturbed other couples in Herron House.
Sunday morning breakfast did not disappoint. A full serving of bacon, scrambled eggs, hash browns preceded Alice’s birthday cake celebration with enough get-well wishes to fill the entire Pacific Ocean. Tears seemed to be participants’ only defense against their earnest hearts.
We walked to the beach once again, and admired driftwood brought onshore during high tide. We took one good look before turning our backs on Oregon’s greatest charm to revel more on Alice’s big day.
Alice’s 72nd birthday proved to be something special we never could have created by ourselves. Our hearts were lifted – and so were our spirits – by a glorious weekend on the Coast, all made possible by the guiding geniuses at The Aphasia Network.
We love what they do, and how they support us. Our weekend was serendipity personified.
Alice has finished 50 per cent of intensive speech counseling. My partner in life began speech therapy on Jan. 4 at Portland State University (PSU), and my hard-headed woman has less than four weeks left.
We were anticipating professional guidance once we learned Alice qualified for the highly regarded research program, and, like a prized racehorse, she was chomping at the bit to get started. Communication has become Alice’s nemesis, especially when a critical word gets lost in the translation from thought to speech. Consequently, her frustration shows and builds.
Communicating is vital to intelligent beings, so Alice’s word-block syndrome takes a toll on both of us. While waiting for her two hours of therapy downtown to end, I sat on a wooden bench waiting for Alice to appear. Three weeks ago, though, a kindly professor took pity on my aching posterior and showed the way where a nearby cozy waiting area with cushioned chairs invited this weary interloper to ease those sore buttocks. Ah, relief!
The wait affords me this opportunity to chronicle her progress, because whenever we’re at PSU, I cannot Uber. However, on alternate days, Alice’s speech therapy is handled at our apartment. Wesley Allen, therapist extraordinaire (shown above), gives intense one-on-one sessions at aphasia sufferers’ homes and at PSU. The home sessions are extremely helpful to Alice and free me to drive for Uber and keep the financial ogres away, although writing takes a back seat to chauffeuring skills.
Researchers at Portland State University’s Aging and Adult Language Disorders Laboratory joined forces with the University of Washington’s Aphasia Lab to offer hope to sufferers of speech aphasia. Researchers want to understand more about aphasia and its related communication disorders. Alice’s participation not only helps her own recovery; it provides signposts for speech therapists who treat subsequent stroke victims.
Reflections of Christmas 2015
Because I haven’t written in two months, it’s important to report that Alice, Millie and I spent a pleasant holiday season. Close friends and family received our traditional annual photo with Millie around our grown-in-Oregon Christmas tree.
On Christmas Day, we once again celebrated as if we were Jews. We went to a movie and intended to eat at a Chinese restaurant. However, the Living Room Theaters in downtown Portland served so much fine cuisine and wine at plush seats where we watched “The Big Short” (which we wholeheartedly recommend) that our appetites were summarily squelched. Therefore, Chinese food was postponed until a week later.
I worked almost all day/night New Year’s Eve, prior to an unexpected invitation from friends to party hearty at their house less than a mile away from our apartment. We arrived half an hour before the clock struck midnight, and were treated like guests of honor. After some moderate drinking and smoking, kisses of congratulations were shared all around after the TV channel of our hosts’ choice showed the Times Square ball drop (on a three-hour tape delay).
Alice and I stuck around until 2 am. By the time we made it home, we didn’t fall into bed until 3:15. That equates to 6:15 am on the East Coast, so Alice and I became born-again party animals. What’s more, my cousin Margaret invited us to partake of a New Year’s Day sumptuous ham dinner joined by her offspring Brantley, Rori and Lauren.
Snow in Portland
It’s a good thing I worked New Year’s Eve, because the night of Jan. 2nd and the next morning this part of the Great Northwest was hit by 1-3 inches of snow and ice. Portland doesn’t salt its roads, claiming the product — used liberally in the rest of the country — is bad for the environment. Consequently, an outbreak of wintry precipitation shuts down sensible highway travel.
East Coast transportation is similarly affected, but only after the two-feet-plus snow event that buried the Northeast, including our friends in Doylestown, Pa. And oh, does Alice gloat! I suppose enduring a $400-plus monthly electric/gas bill for numerous years can do that.
Yes, Alice and I have reasons to embrace our newfound Portland life, but we are extremely wary of the explosive rental market and what a new lease on our modest apartment might entail. Nevertheless, we are optimistic about our prospects (at least most of the time), and Alice might surprise us all by going back to work. More to come!
Alice McCormick has been chosen to participate in a joint research project with the Aphasia Laboratory at the University of Washington and Portland State University.
Once her selection was announced, Alice consented enthusiastically. Participation begins Jan. 5, 2016 with a week of comprehensive testing.
Aphasia followed Alice’s stroke
The Aphasia Laboratory at the University of Washington conducts research to better understand the complex processing of language and how it affects individuals with aphasia. The project studies the theoretical nature of word-retrieval deficits in aphasia-stricken individuals with emphasis upon rehabilitation.
Word retrieval is related to one’s attention and cognitive processing, and the disorder known as aphasia is a common aftereffect of a stroke. Except for the speech aphasia and an inability to put words to paper and/or keyboard, Alice appears to have fully recovered from her mishap.
Difficulty finding words is a core feature of aphasia, which affects approximately 80,000 people each year in the U.S. Director of the University of Washington’s Aphasia Laboratory is Diane Kendall, whose focus is on rehabilitation and understanding the theoretical relationship between phonology (sounds) and aphasia. Her overall career objectives are to conduct systematic treatment research that creates better patient outcomes.
Through various awards and grants, Dr. Kendall continues to systematically test and refine protocols in phonomotor treatment for word-retrieval impairments in aphasia. In 2013, the quality of her Standardized Assessment of Phonology in Aphasia won Dr. Kendall a Fulbright Scholar Award to teach and conduct research at the University of Pretoria, South Africa.
Treatment at Home and at Portland State U
The Aphasia Research Laboratory is affiliated with the University of Washington Integrated Brain Imaging Center. After Alice’s pre-testing week, she will receive six full weeks of treatment on a one-on-one basis with Wesley Allen, research speech-language pathologist, who works directly with Dr. Kendall. For Alice, this is big time.
Once the six weeks of hands-on treatment is finished, four more days of testing will follow, culminating three months later with a final round of testing.
I hope to report in depth on Alice’s progress and the rigorous treatment road ahead. We are both enthusiastic about this turn of events and hope this development signifies giant opportunities for the two of us.
Alice has been supportive of my partnering with Uber as a driver, but deep down inside, she prefers that I be at home writing my memoirs while she is working. Driving in Portland has turned out to be a dependable source of revenue for us, but it distracts from the goal we set back in September 2014 for our trek West to the Beaver State.
My life story hangs in the balance, and so does our survival. Onward and upward!
Read more about Alice’s stroke and recovery in the archives of this blog beginning with March 2015.