ALS will soon kill me: A cruel mistress who's teaching me to savor life (Phil Avillo)

Philip J. Avillo

Retired York College professor Phil Avillo calls ALS his "malevolent mistress." "I am a quadriplegic," he writes, "unable to move any part of my body, paralyzed from the neck down. And now, she has begun dismantling my remaining strength above my shoulders."

A malevolent mistress moved in with me permanently more than two years ago. I call her Lady ALS because even some of the most avowed enemies treat each other respectfully.

She has made her presence felt every day. She envelops and is entwined through every fiber of my body. She has wasted my muscles, leaving sacks of skin hanging loosely from my bones. She sleeps with me. She eats with me. She bathes with me. She dresses with me. She writes with me. She reads with me. She will die with me.

The arrival of Lady ALS made me think of other challenges I’ve faced. The first time was competing on my high school football and lacrosse teams. In those early days, I had to challenge myself to keep up with my teammates, to run as hard and as fast as they did, and I discovered I loved doing that. College athletics did the same thing for me, pushing me further and further to my physical limits.

Nothing, however, compared with my six weeks of Marine Corps boot camp. At age 17, in my freshman year in college, I enlisted in a Marine Corps officer training program, and the following summer I arrived at boot camp in Quantico, Va. Never had I experienced anything as demanding, yet as fulfilling, as I did during that proving time. I did it again two years later and realized how much I relished the challenges.

Phil Avillo first served in the Marines in Vietnam as an infantry platoon leader and an air observer. For his service, he received three Air Medals, a Navy Commendation Medal with a Combat V, and the Purple Heart.

Then came active duty as a 2nd lieutenant, trained and assigned as an infantry platoon leader in the First Marine Division. Soon after, I completed air reconnaissance school and deployed to Vietnam as a recon air observer, flying combat missions. The bullet struck me less than six months later, while we were flying low and fast over an enemy position. Doctors amputated my left leg above the knee, and shortly afterwards pseudomonas meningitis struck me, a deadly infection that pushed me into a delirious state for several weeks. Following this sequence of events, I decided that if I could meet all these challenges, I could overcome anything.

And I did.

For nearly 50 years, with the aid of my family, many friends, the Veterans Administration, and Marine Corps, I became a vibrant, physically active member of my community, never dwelling on what I could no longer do, but always looking forward to what I could accomplish. I walked again. I coached on fields and courts for over 25 years. I danced, I skied, I golfed. I competed as a Masters level swimmer. I went back to school and earned a Ph.D. in history and then taught standing at the front of a classroom for 37 years. I walked through many great cities, including San Francisco, New York, Rome, Paris and London. I lived life to the fullest and wholly expected to do so until my death.

But I hadn’t counted on Lady ALS.

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She is unlike any antagonist I have encountered. Like a wayward lover, she insists on being with me, but defiantly demands her own way. We quarrel with each other. We make up with each other. She recognizes that my anger will flare at her ever more frequently as her presence becomes more and more entrenched. Like an ill-fated lover, I have reconciled myself to her interminable grip.

Reconciliation, how is that possible? This insidious roommate has only one purpose – to kill me.

Yes, I know that emphatically.

What I also know and have come to appreciate is that Lady ALS has offered me a clear perspective of my future. She has entered deep into my soul to remind me of my own mortality. She has promised to deliver me to the destiny of my birth, the destiny for all mortals.

Glimpses of that outcome have appeared to me over my lifetime, having witnessed the deaths of many friends and relatives. But, while they had been reminding me of my final destination without offering any hint of how and when it would occur, ironically, Lady ALS illuminates that path, giving me a wonderful gift with which to prepare for that moment. It is almost as if she has said to me, “All people have their own personal and private apocalypse. Yours differs because you know it is coming, and all who know you know it is almost here. My purpose is not to increase your suffering, but to work closely with you as I ease you away.”

She has kept her promise, but it carries a high price. The knowledge of my final journey has been enlightening, yet terrifying. After receiving the diagnosis, my understanding and familiarity with ALS grew considerably, and I feared every loss before it arrived. Most unimaginable to me was the thought of losing the use of my hands and my arms. How would I hold my wife’s hand? Wrap my arms around her? My own children? Their families? Frolic with my grandchildren? Hold and read books, the substance of my adult life?

The decline continues. Because of her, I am a quadriplegic, unable to move any part of my body, paralyzed from the neck down. And now, she has begun dismantling my remaining strength above my shoulders. Swallowing, talking, breathing, all will diminish until I am unable to speak, eat, breathe. She has held back, stripping me of my remaining humanity until this very last phase. The pace has quickened.

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Given these devastating realities, it appears she has abandoned her promise to provide me with a gentle exit. Not so. She has shown significant compassion by providing me with a pain-free decline. And she forced me to reach deeply into myself to locate once again the strength to carry me through the last days of my life.

Few abilities are left me, but I still have my voice, and it has become my vehicle for dictating this entire narrative. A more amiable and helpful friend, Dragon Diction, whom I call Dragon Lady, transcribes my speech into these words. She also helps me read and watch all things digital, as well as stay in touch through email with friends and relatives. I retain my mind and my eyes and my ears. Finally, my taste remains: while my ability to eat solid foods has ended, I can still appreciate a glass of wine every evening, and every night I enjoy four or five pieces of dark chocolate, savoring each as it melts in my mouth.

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I celebrate what I do have. I live in every single moment, taking nothing for granted. My heart is filled with gratitude for the life I have been privileged to live.

Still, I am not a solitary figure who has reached this place alone. Many other sources have fueled my inner strength over the entirety of my life. These include institutions such as the Veterans Administration, Philadelphia ALS Association, Penn State Hershey Medical Center’s ALS clinic, and the Paralyzed Veterans of America, each of which has provided extraordinary support.

On the personal level, our many friends around the country and in York County where we have lived for over four decades, as well as the York College of Pennsylvania community, have rallied individually and collectively to temper this storm. They continue to do so.

For the last two years Phil Avillo has suffered the effect of ALS.

I am most grateful for my family. Three children and their spouses, and six glorious grandchildren provide my wife, Linda, and me with great joy.

But no one has provided me with more inner strength beyond my ability to comprehend than Linda, to whom I’ve been married 49 years. Her strength has revealed itself every day in her total devotion to me and our family. After all, as she is fond of telling people, when she met me in the Philadelphia Naval Hospital I weighed about 130 pounds, was missing a front tooth and a leg, and was going bald. She has continued her dedication every day, every week, and every year since. She is now, and she has always been, the great love of my life.

In the time since that insidious Lady ALS has become my second and most unwelcome lover, the true love of my life, Linda, has continued to brighten my world and inhabit my soul. Together, Linda and I turn our eyes and our hearts to the love we share day-by-day, hour-by-hour, for all the remaining moments we have together.

Philip J. Avillo is a retired professor of history at York College of Pennsylvania.