Excuse Me While I Kiss The Sky

Jon 4

I recently saw a photo of Jimi Hendrix and it reminded me immediately of Jon. In fact, every time I hear a Hendrix song or see his iconic image, I think of Jon — and probably always will for the rest of my life.

A few years ago, I was facilitating an art/music enrichment program at a nonprofit that served adults with developmental disabilities. I arrived there in the latter part of my recovery after spending several years of confinement to a home hospital bed while combating a debilitating illness. And it was while still in the throes of the residuals of my illness, that I presented myself to my new clients, first assisted by a walker and eventually, graduating to a cane. I was also initially toting a portable oxygen machine —and I don’t mind saying, that particular part of my arsenal was not the easiest contraption to accessorize, fashionista that I am!

Leopard Cane (2)In an effort to detract from the cumbersome machine that I had to lug around and for some fun flair, I hand-painted my walker in a zebra stripe pattern and my cane was sporting a leopard print. Both were bedecked with glimmering Swarovski crystals and trimmed with a silk tassel. Thankfully, after a short period, I was able to lose the oxygen tank, then the walker, but still had to rely on some mild mobility assistance. And it was that animal-themed cane that first caught Jon’s eye.

Jon was sitting at a table intently drawing a Moog Synthesizer, displaying great attention to detail and apparent knowledge of its mechanisms. He only paused when he happened to notice my leopard print cane. He remarked that he liked it. In fact, he proclaimed that he had several leopards of his own at home.


This revelation peaked my interest, and I shared that I had some cats, although not of the leopard family, and that they were named Thelma and Louise. Jon shared that his leopards were named Holly, Alicia, and Jacob, and he also offered up that his leopards slept with him and spoke to him all the time. In fact, sometimes it was hard to sleep due to all the chatter. It was after some further conversation and more than a few probing questions on my part that I came to realize that the leopards were of the stuffed toy variety.

As time passed, Jon and I bonded over music. I am a singer/guitarist and I learned that Jon played guitar too, as well as keyboards. And he was a warehouse of information regarding music, both in theory and culture. He was bonkers over Hendrix and also loved Stevie Ray and Buddy Guy. He explained that his father was a rock musician and taught him everything he knew and that his mother was a movie star.

He continued with his familial revelations. His sister had died of a drug overdose and he was very upset about that. And when he was told of her passing, he just screamed and screamed. His parents were divorced and both had remarried and that bothered him immensely. And he quickly added that he didn’t care much for their new partners, with his voice growing in both intensity and volume, with a hefty dose of anger for good measure. But, he guessed it was better than the alternative, for they hated each other with a passion. And suddenly switching gears and leaving me with TMI whiplash, he asked if I was rich and if I could buy him some sort of expensive music equipment. The particulars of what he wanted me to purchase escape me now, but this was a common occurrence. Jon would often draft these extensive “wish lists” during our time together. Usually, they included expensive music-related items. I learned quickly to deflect these queries. During this first game of “gimme” I simply said I didn’t have that sort of cash laying around, but what I did have was some breath mints, if he’d like one. He eagerly accepted and appeared satiated with the offering, at least for the time being. And so we began…

Jon's Christmas ListAs I receive extensive contact sheets on all my clients, I learned all the clinical information on this man. And he was a man — at least in the chronological sense. However, although he was 24 years of age, Jon’s speech patterns and the topics of conversation were those one would expect of someone much younger…perhaps a young boy of 10-12? As I read all the pertinent information on him and his numerous conditions, I learned about his various diagnoses, medications, and behavioral issues. Specifically, Jon had Autism, Schizophrenia and was Bipolar. And as if these challenges weren’t enough for this diminutive young man, he also was battling the ominous disease Cystic Fibrosis. And I also read that Jon was prone to violent outbursts and needed to be “redirected” and “reinforced”. It was also stated that he was very creative and loved art and music and he could be distracted by introducing these topics or activities, should he begin to act out or become agitated.

As I grew to know Jon, I found there was so much more to him than his diagnoses, meds, or stats. He was brilliant musically and quite the prodigy. However, besides the perpetual request for me to buy him things, what was a common repetitive theme in our conversations was his feeling of abandonment. He especially yearned for his mother’s love and attention, for according to Jon, and from what I learned from others,, his mother and he had a very dysfunctional relationship, one that was peppered with violence and rants on both sides. I had heard accountings from colleagues at the non-profit and the administrators of his group home which attested to the volatility of this mother and son. In spite of this, every weekend, Jon eagerly waited for his mother to make an appearance and take him out of the group home for a respite, however brief. Sometimes when she accommodated, these reunions resulted in the police being called to her home and hauling Jon away in handcuffs, usually due to him becoming enraged and unmanageable, which resulted in him throwing things and/or breaking something. On these occasions (and they were rather frequent) he would be placed in a mental health facility for a brief stint, where he was sedated, stabilized, and then returned to his group home. It was a cycle that repeated itself and although most unpleasant for Jon, he still intently waited to receive word if she would be coming to get him. But many times, although promised, his mother either wouldn’t call or wouldn’t show up at all after making plans, which distressed Jon greatly.

So when I learned that the nonprofit had a Big Brother/Big Sister Program and that no one had signed on to step into this role for Jon (due to his violent outbursts), I said, “I want HIM!”

It was with great sensitivity that I approached him and introduced myself as his new “Big Sister”…knowing as I did of his REAL sister and her demise and how he grieved over the loss of her. He didn’t miss a beat when he said that having me as a token sibling was cool, but he really needed a Mom. Or if I couldn’t do that, did I know any Guns ‘N’ Roses songs? And while I was at it, he also needed new Ernie Ball strings for his guitar…could I pick some up for him? Now THAT, I could do! And while I could muster up some Guns ‘N’ Roses in a pinch, it was the “mother” thing that caught me off guard. After all, I needed to maintain a professional distance and decorum.

Every week, my new “little bro” and I met at his group home. I never had a single problem with him in spite of all the warnings of impending violence. In fact, we would go into his room and shut the door and jam! I was surprised to see that he possessed some impressive musical equipment that he said his rocker father had bought for him. This included a small amp, some pedals, and his “ax” itself. And it was there that I first met his esteemed leopard family, Holly, Alicia, and Jacob.

jon 004

In my ramblings through life, I had met and played with many fabulous guitar players, but Jon played with a fervor and skill that was really quite remarkable, and it took me quite by surprise. I was glad he tolerated me and was patient with my meager endeavors, as eight years in a hospital bed had robbed me of some of my chops. But, I could sing and hold my own as a rhythm guitarist, and that was good enough for Jon’s refined musical palate.

Jon 9

In between songs, Jon paused to share secrets with his gallery of stuffed animals lined up on his bed, Holly, Alicia, and Jacob. He would frequently whisper into their ears, then tilt his head, intently listening for their responses. On occasion, he would interpret for me this sacred exchange, and eventually, I even found myself addressing the leopard menagerie.

He wondered once aloud to me if I thought that when he died if he would meet Hendrix. I told him that there was once a song that had the line “If there’s a rock ‘n roll heaven, you know they got a helluva band”. He thought that was pretty lame, but wondered if there were jam sessions in heaven? For THAT was a pretty awesome concept!

One of my personal idols was Janis Joplin and I used to sing a lot of her stuff in my younger years before my illness and oxygen therapy had taken their toll. I suggested that in our afterlife, in whatever form that takes, that Jon and I approach both these icons and see if they were available for some gigs. He fell out over this, laid on his back and kicked his legs in the air with childlike abandon, had a “sidebar” with our leopard-audience to explain the joke to them…and launched into “Manic Depression.”

I rarely gave out my phone number to clients, but I did for a few. Of course, Jon was “family” now, just like the rest of the dysfunctional flock perching on my genetic tree. And there were many phone calls for a plethora of reasons. Usually, it was mother-related (“I hate her!”), monetary (“Can you buy me…?”), or he just wanted to talk about music in general. But sometimes, it was “dark” in nature.

Jon was raging against his personal demons, his mother, his lot in life, and the fact that he couldn’t break free of that group home. And later, it was the constant oxygen support he needed for the Cystic Fibrosis and all the trappings of the illness that confined him that caused him to sink into despair, often resulting in tumultuous tears and a goodly amount of profanity.

But, more than anything, Jon wanted to know the feeling of being a member of a REAL band, for he never had the experience of being on a stage and hearing the roar of the crowd or seeing the wave of hands or the bobbing of heads…all the sensory pleasures, the vibrations, and the electricity in the atmosphere — the ebb and flow of the emotional tide one rides into the nirvana of the spotlight. I felt sad…like I had missed the mark with Jon. I also had wanted to have him experience a recording studio or perhaps arrange to bring him to a festival where he could shine. But his disease was not a forgiving one and TIME is not something that any of us are guaranteed. And perhaps I was in my own denial about the reality of Cystic Fibrosis? I never considered the loss of opportunity due to constraints on TIME. Time was an enemy lurking in the shadows, dark and insidious. And unlike the Rolling Stones song “Time Is On My Side”…it was not, where Jon and I were concerned.

I felt compelled to do a portrait of Hendrix for Jon. He was visibly moved when I presented my handiwork, and ran his hand over the smooth glass and said, “I love this!” He then asked that I IMMEDIATELY hang Jimi’s likeness above his bed. Of course, I obliged his demand. As Jon explained, by placing it directly above his bed, he could see it and so could the leopards, Holly, Alicia, and Jacob. From Jon’s point of view…THEIRS was equally important.

Jimi 2014 (2)

One day, I arrived at the group home for our usual jam session and he was in some sort of “vest” contraption with oxygen tubing running to his nose. It was explained to me that he must wear this periodically. At different intervals, it would compress in order to force the fluids up out of his lungs. I didn’t show it, but it sort of freaked me out. I wondered how he could appear so nonchalant about this latest development. Yet, there he sat at the kitchen table, writing lyrics and chords for his remedial rhythm guitarist…me.

Jon's song chords

There were many hospitalizations to follow and on these occasions, I would bring my acoustic guitar to the hospital and he would play for the nurses, staff, and even doctors (when they made a rare appearance). I would watch their faces as they listened to this 24-year-old man (who was snuggled up with a life-size leopard) absolutely “rip it” on my guitar, playing a song by his beloved Jimi. I hoped, if only a moment, they saw what I saw — a human being that was so much more than the visual absurdity of the man, guitar, and leopard. And as he played, whether it be for the room attendant or the night nurse, Jon found his “light”, with the hospital serving as his amphitheater and a leopard as his devoted “roadie”.

On our last night together, Jon spoke of his mother. In the previous year, I had never met this elusive star of stage and screen. Jon yearned for her acceptance and love so very deeply. For every inner child, no matter what chronological age they may attain has only one mother in the biological sense. And Jon lamented repeatedly, “I wish you were my mother!” All my sensibilities as a responsible mentor screamed to respect boundaries. I parked myself by his bed and kept vigil while he dozed with his leopard, Holly.

It took me by surprise when his “mother” very suddenly made the decision to move him to a nursing facility across the state many miles away. And it was there shortly afterward that Jon died. I got a call from his group home advising me of this fact. I sat God-smacked.

I have all of Jon’s notes and song lists. I have photographs of our last jam session in his bedroom at his group home, and the bittersweet memories of the “unplugged” hospital concerts he gave while cradling my acoustic and cuddling a leopard. But I don’t know what happened to the portrait of Jimi (which I’ve since recreated for this article) or his closest allies, Holly, Alicia, and Jacob. But I like to think that I DO know what happened to Jon…

“There’s a spotlight waiting
No matter who you are
‘Cause everybody’s got a song to sing
Everyone’s a star
(Everybody’s got to be a star)

If you believe in forever
Then life is just a one-night stand
If there’s a rock and roll heaven
Well you know they’ve got a helluva band.”

I still revisit the old photographs from time to time. And sometimes, I gaze upon the song lists that Jon painstakingly penned, and my eyes always settle on our last song together, “Sweet Child O’ Mine.” How I wish he was!

jon 8


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