Just as time heals all wounds, all wounds leave scars. When I gaze upon Allen’s house from my back deck, I often reflect upon my times with him. The pain of his mortal passing is still palpable, but it is less painful to bear with the passage of time. Yet, the absence of his presence is a void unfilled. His spirit, however, continues to live through the time and talents he shared with others and me.
***
As a psychologist, Allen was probing. Nearly 30 years ago, my family and I moved into the neighborhood. During the first week in our new home, my wife and I received a formal invitation in the mail to dine with Allen and Nita. Upon arrival, along with another new couple to the neighborhood, we were warmly greeted and enjoyed a delicious dinner prepared by Nita. Our conversations with Allen during the meal were not superficial. He wanted to know our family histories, our birth order, our philosophies, our accomplishments, our failures, our goals in life, our plans for the future, our thoughts on the afterlife.
As we walked back home after dinner, I said to my wife, “I feel like we just had a psychotherapy session. Nita was sweet, but Allen was unusual.” In response my wife retorted, “You two will get along well together.” How true that came to be.
***
Multifaceted, Allen often combined his multiple talents. Almost 15 years ago, my mother, Hilda, visited from California. In her youth, Hilda was a professional saxophonist and singer in an all-girls band, the Victory Sweethearts, touring with the USO during WW2. Allen invited Hilda to his home studio where an entire two-hour session was video recorded. First, Allen asked many probing questions of my mom, reminiscent of my first experience with Allen.
At one point my mom asked, “Goodness gracious, are you a psychiatrist?”
Then with similar interest, he queried Hilda on her experiences as a touring musician. Both parts of the interview contained revelations that were new to me. At the conclusion of the interview, they shared music together. While Allen played the piano, my mom sang standards from the 30s, 40s, and 50s (also Allen’s favorite music genres).
At the conclusion of Moon River, Allen turned to my mom and proclaimed, “You and I would have been very good friends in our early years.”
To that my mom blushed and nodded her head. As they alternated singing songs and playing various instruments, the entire time was digitally recorded. Allen professionally rendered the entire session with my mother into a production I posthumously shared with my three younger brothers and my son for posterity. Allen also recorded a similar session and service for my dear friend, Martin Gerschwitz, keyboardist for Iron Butterfly, among other rock bands. Martin shared Allen’s production with his global family of well-known and accomplished musicians. Allen uploaded the documentary on YouTube. (See the video here.)
Martin confided to me, “In all my 60 years on the road no one has ever taken the time to document my life. My family and friends are so proud to learn more about me.” Allen was adept at capturing the essence of people by combining his multiple talents into a timeless package for others to experience in perpetuity.
***
One evening in Allen’s library, while we reclined in the comfort of his brown leather chairs, our light conversation changed tone and tenor. By this time, Allen had confirmation of his terminal illness. With a wrinkled brow and a piercing gaze, Allen became suddenly solemn. As he stared into the depths of my soul, Allen asked, “Will you write the epilogue to In Defiance of the Night when I’m gone?”
Although honored, I was very surprised and immediately overwhelmed by the request. To Allen I asked, “Why me?”
He paused with a sardonic expression on his face and responded, “You write almost as well as I.” Despite his back-handed compliment then, I now attempt to celebrate his memory, convey his wishes, and fulfill his faith in my efforts which follow.
***
With chemo and radiation treatments no longer effective or recommended and since palliative care was inadequate to address excruciating and intractable pain, Allen sought options. Rather than languish, he chose to enroll in hospice. To be eligible, 2 doctors first needed to certify in his medical record there remained less than 6 months to live. With this medical documentation finally in hand, Allen enrolled in TriCities Chaplaincy Hospice Care (TCC). As a hospice client his medications were immediately adjusted, enabling Allen to be pain-free for the remainder of his life. In addition to weekly in-home visits by nurses, working in tandem with physicians, Allen had access to TCC social workers, nutritionists, theologians, physical therapists, 24/7 phone support, and medications delivered to his door, next day – ALL for free! The quality, comfort, and dignity of his life were all improved once Allen enrolled in hospice.
***
Shortly thereafter, Allen resumed riding his recumbent trike, wrote several more chapters in this book, continued to correspond with friends across the globe, played his multiple musical instruments, performed in concerts at the Tri-Cities Cancer Center, entertained guests in his home, and socialized out in the community. Allen flourished with the expert and compassionate care of TCC, including his oncologist, Dr. G, and his radiation oncologist, Dr. Sue. Of special mention was the love, care, and compassion of his in-home hospice nurse, Kelli! Yet, the end was inevitable.
***
Fortunately for Allen, Death with Dignity was enshrined by law in Washington State under RCW 70.245 (DWD Act). This Act expanded his options. Of immense and invaluable assistance to Allen was a person named Bill from End-of-Life Washington (EOLWA), a nonprofit organization providing information, education, and support to people facing terminal or irreversible illness. They advocated for excellent end-of-life care, the use of advance directives, and patient centered care, as well as support for the right of qualified patients to use the Act to access aid-in-dying medication. Confidentiality was strictly protected. There were never fees for their voluntary services.
***
While Allen’s condition continued to deteriorate over time, he chose to conclude his life with dignity using life-ending medication (Preparation). Following Zoom meetings with his treatment team, Allen made an initial written request to his consulting physician (Dr. P) and separately to a prescribing physician (Dr. C) for the medication (Meds). A week later, he was required by the Act to submit a second request to them. Both of Allen’s physicians from the University of Washington Medical Center were intimately familiar with the Act and Allen’s terminal illness. Their compassion and professionalism were without equal. James, a social worker from the Fred Hutchinson Cancer Center in Seattle was a fount of knowledge who worked in concert with Allen’s physicians. In Eastern Washington, however, there is a paucity of practitioners familiar with the Act and even fewer who are willing to participate in this program. One hospice nurse indicated almost half of her 16 patients wanted, but could not find, physicians to assist them in this process – a medical travesty. However, Allen was more fortunate than many.
***
Once all signatures were secured, the prescribing physician sent an order to one of (only) two pharmacies in Eastern Washington, located in Wenatchee and Spokane, who would compound the prescription. As the time grew near, Allen finally called the pharmacy for the meds. However, the meds did not arrive as scheduled by FedEx for some still unexplained reason. Cynthia, the head pharmacist at Eastern Washington Hospital, retrieved the package from FedEx. She then drove an hour and a half from Wenatchee to Allen’s home to deliver the meds, in person! As the doorbell rang, Allen invited her into the living room where we all sat. With tears streaming down our faces, Allen uttered, “Why, why would you drive all the way to deliver these drugs in person?” Cynthia, choking back tears, exclaimed, “I am a cancer survivor, too. I know how important this is for you to die with dignity and be in control.”
***
So, the end now begins.
With meds in hand, the clock started to tick. Allen wanted to enjoy his life until he could no longer speak, play music, write, sing, or be pain free. He accepted these qualities which defined him were on the decline; it was only a matter of time before they would cease. With his medical condition continuing to deteriorate, Allen’s energy level was dwindling and finite. His balance was unstable. He drooled and his speech was slurred. Allen could no longer type on the keyboard. He was on strong doses of fentanyl for pain management. For these reasons, unannounced visits and calls were discouraged. His well-being was of paramount importance to his dear friend, Josie, and me. We attempted to protect Allen from depredations of others, although a few slipped through. To include names is inconsistent with what Allen would have wanted me to chronicle in his end-of-life journey. As Allen often said, “Even though you may be right, choose to be kind.”
***
As Allen’s cancer continued to progress, he experienced “episodes.” Whether these were transient ischemic attacks (TIAs, or mini strokes), growing brain metastases, or focal point seizures is uncertain. These incidences came with increasing frequently and without warning, generally lasting a minute or two. During these times he could not talk or walk. His jaw would open and close involuntarily. After a dozen or so of these events over the course of approximately one month, he began to experience progressive left sided weakness and mouth droop. His speech was more slurred. Allen became increasingly aphasic. All these attacks and the resulting deficits further supported Allen’s desire to end his life with dignity. Yet, his greatest fear was a future “episode” would make him ineligible or unable to take the life ending medication. A condition of the DWD Act is the person must be mentally and physically able to consume the concoction. At this point for Allen, it was a hurried race against an inevitable time.
Since the “episodes” came more frequently with more debilitating effects, Allen decided the time had come. He chose a date. Then, he sent out email invitations to a select group of individuals to attend his send-off. Specifically, on November 7th he wrote:
I always thought I would know when it was my time to die. My time is now. I have said all my goodbyes. I have embraced all the people I love.
I would like you to come to my send-off. At that time, I will drink the cocktail that will peaceably lay me to rest. If you feel ambivalent about coming, please know I respect your decision.
If you plan to attend, please come to my house on Saturday, November 11 at 2 PM — no earlier and no later.
Looking forward to seeing you then.
Love, peace, and joy,
Allen
***
By the time he sent out the email, there were 14 people who received this invitation. Allen wanted everyone to meet in the living room of his home in a circle to say goodbye and to exchange last words. Then, Josie and I were to accompany Allen into the bedroom to prepare. After all necessary preparations were made and Allen was comfortably ensconced in bed, he wanted the group to assemble and join hands in a circle as he took the meds, Josie holding Allen’s left hand and me holding his right. Allen wanted the hand-held circle of collective energy to flow into him as he drifted off to the afterlife. Unfortunately for Allen, it did not happen as he hoped.
***
In the days leading up to November 11th, Allen suffered a series of progressive and more debilitating attacks. In one instance, Josie called me from the kitchen to Allen’s chair in the office where an “episode” was in full bloom. We knelt beside Allen and held his hands while offering supportive words of comfort. After two minutes or more, the incident gradually subsided. He then looked in my eyes and said, “That was a bad one. The whole time I knew you were there. I was not afraid with you and Josie by my side.”
***
In the days immediately preceding November 11th, I spoke with Allen about his compromised and worsening condition. I expressed my concern for his continued ability to conclude his life on his terms should these events increase in frequency and severity. In fact, I cautioned him, “You may need to consider accelerating the timeline to assure your success.”
Allen placed his hand on my shoulder, looked in my eyes, and responded, “You may be right. I’ve fought this battle from the beginning too long to fail at the end. If the episodes continue, I will.” We both remained hopeful.
***
In the morning and afternoon of November 10th, Allen experienced two more severe attacks. As I helped him to bed that night, I remarked, “You had a bad day today, but tomorrow will be better. You will get to see all the people you love and those who love you. Your end will be at the time and place of your choosing, much like you have lived your entire life. How happy I am for you. Please promise you will call me during the night if you have another ‘episode,’ or if you need to get up to use the bathroom. Promise?”
“Sure,” was his response. Of course, Allen had another severe occurrence during the early night and never called. Instead, he waited until 6:15 AM, phoned, and indicated, “I need to accelerate the timeline to NOW!”
***
With Josie on speed dial, I apprised her of my conversation with Allen. Half-dressed with teeth unbrushed, I ran at dawn across my wet lawn in new sheep-skinned slippers, stepping in my golden retriever’s massive poop. So as not to offend either Allen or Josie, I returned home to change into shoes and brushed my teeth. At 6:30, I arrived at Allen’s. Every light in the house was on. He was staggering around the office, straightening a stack of papers. Before I could ask what the hell he was doing, Allen declared, “It’s time. I’m done. I’m ready. The ‘episode’ I had last night was the worst. The next one could happen at any time. I can’t wait until 2 o’clock. It must be now. Now or maybe never.”
“Okay, let’s start the process,” I said. “But why didn’t you call me as you promised last night?” “I didn’t want to wake you. You have been sleep deprived taking care of me all this time,” he explained. We both took a deep breath and reclined on the brown leather chairs in the office as Allen had last minute instructions for me, just as Josie arrived.
***
With conviction and resolve, Allen moved to the bedroom, escorted by Josie and me. Allen got into bed with assistance. He was covered with a comforter and propped with pillows. Allen then took the prescribed premeds. In the kitchen, I mixed the EOL meds with apple juice and grabbed a grape popsicle from the freezer. Back in the bedroom, we all exchanged heartfelt words of love, comfort, and appreciation. When all had been said, Allen ingested the bitter end-of-life concoction. A few sips of apple juice were followed by his favorite food, a grape popsicle. 15 minutes later and much to his enjoyment and satisfaction, he had to have one last pee in defiance of bladder cancer. Back in bed, Allen gradually and peacefully drifted off to sleep in the embrace of Josie and me. He continued agonal breathing for approximately 30 minutes more. Allen’s life ended peacefully with dignity at a time, place, and method of his choosing around 9:30 AM on November 11, 2023, surrounded by people he trusted and loved – a remarkable end to a life well lived.
***
As in life, Allen also prepared for death. Gene was Allen and Nita’s friend since 1972 from Grenoble (France), where they first met as missionaries. Gene, a fellow writer, artist, and musician recently wrote to me, “Most vivid are my memories of Allen doing what has entered my mind as his defining song, ‘My Way.’ In the last months of his life, as Allen struggled with cancer and the slipping away of his beloved Nita, I thought of that song, recalling how Allen had made it his own, bringing passion, sincerity and impeccable delivery to the lyrics and melody. I am sad nearly to the point of tears that ‘the final curtain’ has finally fallen.”
***
Allen transitioned to the afterlife on his terms. To avoid calling 911 and having EMS, police, coroner, and local media involved in Allen’s affairs, I contacted TCC. Shortly thereafter, a hospice nurse arrived and made the official pronouncement of death. Allen’s body was then transferred to a local funeral home, who arranged transportation to the Willed Body Program at the University of Washington’s School of Medicine (Donor). Even in death, Allen wanted his life to have meaning and value to all students and people his presence touched.
***
But, Allen was not yet done!
Even though his life had ended, Allen still had parting words for the 14 invited guests, who gathered, as planned, at 2 PM. In preparation for the assembly, Allen created a 12-minute video on his iPad the night before his death. In abstentia, Allen wanted the iPad propped up on the chair in which he would have sat for all to see and hear. After the video was finished, there were no dry eyes in the group. Josie, the designated moderator of the group meeting, then asked each for input to the question Allen posed to all in the video: “Given this curious situation, what is the most important thing that comes to your mind?” Otherwise stated, my interpretation of the question Allen posed was, “What value did Allen add to your life?”
***
Answers were mixed. Most indicated material “things” Allen had given them. Some responded with Allen’s generosity. One said how Allen paid off their student loans, freeing them and their new family from crushing debt. Another claimed Allen had paid off their family mortgage, enabling them to go back to school for advanced degrees. One person responded with the gift from Allen of many musical instruments, thus promoting a continued career in music.
“Allen was more of a brother to me than my own three younger brothers,” said another.
Several mentioned his oversized ego. Another said how much they both enjoyed watching classic DVDs and discussing the movies afterwards. To give the reader one idea of Allen’s attention to detail, he had compiled a list of his 100 all-time favorite movies, categorized by rating, genre, theme, plot, length, major actors, and director. One person indicated Allen was their mentor and muse, encouraging them to pursue a college degree. Another person chastised Allen, a devoted agnostic, for not prescribing to their peculiar religion.
“Allen was more of a father to me than my own,” cried another. Allen’s “curious situation” enabled me to provide him with medical advocacy, personalized care, technical translations, consistent companionship, and end-of-life support. Consequently, he validated my lifetime of dedication to others in need, particularly during medical emergencies, natural disasters, public health crises, and military commissions. Allen authenticated that my acquired skill set was of value not just to others in the past, but it was integral to the conclusion of his life, as well. He helped me finally recognize and fully appreciate the career choices I made and the paths I followed – a rear view mirror of a road less traveled.
***
Allen Johnson was a compassionate, committed, and cultured man – experienced, educated, and proficient in a panoply of disciplines. He was a teacher, organizational psychologist, a published author of nearly a dozen books, a motivational speaker, and a guest lecturer. He was fluent in French and proficient in multiple musical instruments. Allen was also a prolific painter, a singer, an actor, a blogger, an outdoor and nature enthusiast, and a professional photographer/videographer, to name a few of his talents.
Allen’s wit, charm, creativity, intelligence, integrity, discipline, and humor infused all that he did. He also donated his time, talents, and resources to those in need. He tutored neighborhood kids in creative writing, others in music composition, and some in academic advancement. He tutored me in saxophone, Photoshop, and photography. Allen’s beneficence was boundless. Allen’s still-photography has been showcased in prestigious magazines and his wildlife shots are breathtaking. His pictures of our pets and family over 20 years adorn the walls of our home. Allen was also a consummate videographer, producing professional quality music, interviews, educational, and documentary videos for posterity. True to his obsessive nature for perfection, Allen mastered the intricacies of Photoshop. No photo or video was ever left untouched, released only when they met his exacting standards.
Musically, Allen was versatile and gifted. Not only did Allen excel on the saxophone, trumpet, piano, guitar, and other instruments with skill and precision, but his singing was melodic and exceptional. He started many musical groups and often hosted neighborhood jam sessions in his home for fellow musicians and music aficionados. From across the street, I often heard Allen practicing for hours on multiple instruments, my dogs often howling in harmony.
As a psychologist, Allen was compassionate, empathetic, and insightful, giving others his professional counsel when asked. Politically, Allen was enlightened, progressive, and well versed in current events. As a writer, Allen’s multiple books were and are articulate, engrossing, and fun to read. His clean, clear, and concise prose is a reflection how well he spoke to others.
***
This epilogue to In Defiance of the Night is more than just a chronicle of Allen’s life, unique talents, and amazing achievements. It is the concluding chapter of the endearing and enduring love story between Nita and Allen. He also wanted the epilogue to be a public service announcement, providing encouragement for those diagnosed with terminal cancer. There is hope, help, and alternatives for those afflicted with this insidious disease. As he did in life, Allen determined his destiny in death with relative comfort, complete solemnity, and absolute control at a time, place, and method of his choosing. As Allen’s lifetime friend, Terry, recently wrote to me, “I’ll sign off the way I always did with the email communications Allen and I had…love, peace, and joy.”
***
I am blessed to have had him grace me as a friend, neighbor, brother, and colleague. Allen Johnson remains one of the rare Renaissance men of our era, whose legacy lives on at https://www.allenjohnsonsworld.com/.
Alan W. Joseph, Jr.
Richland, Washington
May 4, 2024
