Fond memories of John
Darlene Nice, MSW, LCSW
There could be volumes written on many memorable residents, but one in particular comes to mind. His name was John. He was a single, 50-something-year-old man with no family living locally in New Jersey. He was childlike in some ways, believing that some day he would get stronger and walk out of the LTC facility he had called home for almost 10 years. John had amyotrophic lateral sclerosis (ALS).
John listened to music 24/7 and taught me about “hoofers and tweeters.” He kept his head shaved, military style, and wore Old Spice aftershave. He had a devilish sense of humor and confessed to being a “leg man.” If anyone entered his room for any reason and just happened to be wearing a skirt or dress, he would request that they please switch the picture of himself in his Marine uniform from the top of one of his gigantic speakers at the foot of his bed to the other. Of course, you couldn't reach it without using a chair to stand on to do him this favor. His eyes would be glued to your legs and his face pink! What a guy.
John was a former Marine, not necessarily by his own choosing. He shared with me that in his late 20s he engaged in some mischievous summer behaviors with friends, deflating hundreds of tires of neighborhood cars, usually on Sunday nights. The judge offered him the opportunity to join a military service or spend time watching paint dry in a cell. John chose the Marines. His time spent in the military lasted just short of completing boot camp.
Career cut short
During a training maneuver involving him crawling by rope and suspended high above ground, John lost his grip and fell, landing flat on his back. He was airlifted to the military hospital where he was treated and diagnosed with the beginning stages of ALS. He was honorably discharged and held very proud feelings for having had the Marine experience, short as it was. He forever identified himself as a United States Marine.
At one point during the five years I knew him, I informed him that I was a commander with the U.S. Coast Guard Auxiliary working out of Cape May, NJ. From that moment on I was affectionately known as “puddle-jumper” and he was “leatherneck.”
John had so much to share with people. What made him so unique and memorable to me was that I never heard the sound of his voice.
He never spoke a single word. He never moved his body on his own. We communicated by me holding an alphabet board facing him at his bedside and him moving his eyes and eyebrows down the different rows and across to the letters. John was vent-dependent, on a feeding tube, bed-bound and totally immobile due to the late stages of ALS.
We devised a sensor call bell designed to rest on his forehead where a twitch of his eyebrow would trigger the light outside his door.
Each visit to his room would begin with him staring at the alphabet board almost in desperation for me to pick it up. The second I did, his eyes would fly down and then across the rows and letters spelling out everything from what he watched on TV last night, to his favorite nurse who had the nerve to take the night off, to him wanting his “prescribed” vodka treat through his feeding tube for “… that warm feeling!”
Our communication skills improved greatly as time went on. But frustrating memories with John were those when he would be unable to spell or describe something to me that I desperately would try to decipher. John could spell amyotrophic lateral sclerosis but had difficulty with other medical terms that he just needed to express.
He was a letter-by-letter, word-by-word man who would become (internally) furious if I dared to try to guess what he was spelling or attempt to finish a sentence. John would simply close his eyes, which told me to leave his room!
There were many funny memorable times with John. He would repeat jokes to me, some of which were risqué.
Depending upon my reaction, he would then spell out to another staff member that he and I were having alphabet sex! Boy, did that spread through the unit.
I did have to see the administrator for that one … she laughed until she cried! Thanks, John. I would then threaten to shut down his music and he couldn't spell out an apology fast enough.
This was all done in good fun. Considering his severe limitations and limited quality of life, I just hoped he was laughing on the inside.
The lasting memory of John was when I visited a Marine recruiting office and arranged for him to receive a red Marine flag, which was hung in his room in full view. It was the only time I ever saw (and discreetly wiped away) tears from his eyes.
John eventually died. I attended his viewing and funeral in formal USCG Auxiliary uniform and saluted him in deep respect. I placed a small pin on the lapel of his suit, which read, “Once A Marine, Always A Marine.” The flag from his room was placed beside him in his casket.
He remains with me still.