Living with MS: One Year Later

Taken on S Grand in St. Louis, this eerie, cloudy morning light is like that of dreams

Last year, I posted an essay in which I announced that I was diagnosed with multiple sclerosis. It feels like fifty years ago. I said that I would concentrate on those aspects of my new reality that I can control, make more music, raise money for MS and to take things as they come. I've done all of that. It wasn't an easy year, but it's getting easier now and I feel more like myself again.

I am in good health and staying busy. It was a year of appointments, but my doctor says things will slow down. I developed a neurological symptom called the MS "hug", which feels like someone is squeezing you from the middle like an uncouth, hairy-knuckled brute squeezes a communal tube of toothpaste in a boarding house bathroom. But it's all jive; my nervous system is sending erroneous messages. It is manageable. I also had to undergo substantial dental surgery before I could begin my treatment for MS, which was a drag. Picture a forlorn Stan Laurel with a bandana wrapped around his head with the knot on top and you'll understand, but I recovered and got the treatment I needed.

Laurel and Hardy wrestle with the former’s dental dilemma.

While I was recovering from the dental surgery, I started to put playlists together of some of my favorite jazz. Under the moniker of the fictitious DJ 501(k) with an absurd name, I held a series of "Spin/Raiser" events events for the National MS Society beginning in August at the Gelateria, an Italian coffee and gelato place in St. Louis beginning in August. I bought a small but powerful mobile PA that I could fit in the back of a ride share and asked Andy the owner if he'd let me come in and play music on the spacious patio and put the QR code at each table that would allow people to donate directly to the organization. Since then, I've raised $1265 by sharing music, eating pizza and enjoying fresh gelato. Earlier in the year, I raised $536, so that brings the total to $1801. I plan to do more of this in 2025, adding more venues and raising more money for an organization that is very helpful to me.

A typical DJ 501(k) Spin/Raiser night at the Gelateria in St. Louis

I have received the first two full doses of the immunosuppressant treatment for MS. I had read that after the treatments began infections were more likely, chiefly respiratory, and that I may be more susceptible to some forms of cancer. I didn't get flu or RSV or cancer, but I did manage to get a dose of Covid, something I had managed to avoid entirely since the pandemic began. It led to some vivid dreams, but more about that in a bit.

The infusion process takes six hours. I was led to my own little curtained area where I was asked routine questions, ported for an IV, hooked up for vital signs, given acetaminophen and an antihistamine and told to wait about twenty minutes while the medicine was decanted. The first time I was given a steroid to lessen a possible bad reaction, which there was, but not to the drug, but to the steroid. Steroids are very effective personality enhancers for me, making me too wonderful for others to bear, so the next time around I opted out. Then they hooked me up to the IV machine that beeps a lot. Every thirty minutes, an alarm would sound and a nurse would reset the machine and let the infusion continue. So, for several hours, I sit, read, eat cookies and drink coffee. It's really not so bad.

After a while on the first infusion, I got up to go to the bathroom, tagging along this wretched beeping thing on wheels full of b-cell-depleting juice pumping into my body. This was not good timing. I managed to get into the bathroom and no sooner did I sit down when the alarm on my IV goes off. It was really loud and reverberative in there, so now everyone at the infusion center knows somebody's in here having some kind of toilet-related crisis. So I'm shooshing it and waving my hands around like it's going to do any good. Will they think I'm having a spell in here? Will they chop through the door to make sure I was all right and find me sitting there exasperated on the toilet next to this noisy machine? I aborted my mission and got up and got out of there, walking down the line of curtained cubicles and beeping my ass off like a delivery truck backing through the corridor. If it were a dream, Dr. Freud would sign me up for sessions four days a week. But this is my real life, or at least I think it is.

I have an alternate reality in my dream world with different versions of houses and apartments I used to live in with hidden walls that reveal sealed off rooms that were time capsules of early 20th century life. Once I found a secret room filled with about twenty old upright pianos covered in thick layers of dust. There was an enormous winding staircase that had been concealed. The apartments I revisit in my dreams have much more dwelling space than I could ever afford in real life. Maybe those hidden rooms I dream about are stores of untapped potential or secrets about myself not yet revealed.

I have a dream version of St. Louis, too. I get off at Metrolink stops I've never seen before but are still familiar. When I walk down the streets, I seem to know where I'm going and buildings are eerily like the real thing but different. Both worlds share people and landmarks, however remixed they are in my head. Stores and cafes I know are in different sections of town and have entirely new decor, but in my head, I just go with it. Dreams rely on suspension of disbelief, just as literature, drama and film do.

Covid upped the intensity and vividness of my dreams quite a bit. I slept a lot. spending the miserable week in an intermundane haze, toggling between waking reality and the dream state. When I opened my eyes, it took me a few seconds to determine which world I was in. I did some work while I was ill and found myself having to pause to figure out which world I was experiencing in the moment. I had an increasing fluidity between conscious and unconscious states. It was nice to exist for a few seconds, uncommitted, unclassified and unbound to time and terrain, ambivalent about whether either reality was the "right" one. This I recognized as detachment, and it is a sweet nectar indeed.

So what will I do in 2025? Chop wood and carry water. Lather, rinse, repeat. Make music, share music, raise money and get on with the business of getting on. My understanding of the neurological me continues to evolve. I'm at risk of infection so I mask up on planes, public transit and in private cars and crowded spaces which I generally try to avoid. I ask the people in my life to avoid me when they or someone close to them is ill. Other than that, I drudge and toil in obscurity along with most of the rest of the world, some of whom have it easier than I do and some of whom have it much, much harder. I try to remember this.

Emptiness for Dummies: A Do-It-Yourself Cosmology

St. Charles County, MO

Disclaimer: I don't endorse any philosophy, practice or religious system. Human systems are flawed, and their implementation leads to cruelty and bloodshed. I'm non-spiritual but recognize those aspects of religious practices that science has found to be beneficial, like meditation. Below are my conclusions from lifelong, self-directed study. Your conclusions may vary.

After four years of practicing meditation for thirty minutes a day, I awoke one morning with the most intense feelings of peace and joy I had ever known and probably will ever know. It was like a flash of energy akin to the one that scientists in recent nuclear fusion experiments observed; It was a tiny glint of brilliant light, a moment with fathomless but still unrealized potential.

Mega blasts of dopamine and endorphins flooded my pleasure centers and I felt like I wasn't on Earth for somewhere between two and ten minutes, but my recollection of time is spotty. I bathed in outer and inner light as the morning sun poured through the window. It was and is my only experience of true serenity. I recognized my own insignificance and it came as a relief. The pressure is off when you're not the center of the universe.

I had read about the state of samadhi, a feeling of seemingly unattainable bliss. Did I experience it? But how? People have practiced and contorted and struggle to reach that state their entire lives, climbing mountains and crossing deserts searching for self knowledge. I had crossed deserts and climbed mountains in search of an understanding of the universe. How did I get there in four years?

That morning I felt completely free from attachments and desires. I took comfort in the idea that there was a whole universe that functioned whether or not I was aware of or understood it. I felt open and aware. I understood that I wasn't in charge of everything. The universe and I were in the shared process of becoming. The feeling was temporary, but the neural pathways forged by those fleeting moments of lucidity and the thought processes they kickstarted, are still there influencing how I think and what I do.

I was raised as a Catholic, although I managed to avoid a religious education. After I got through first communion in a slammin' polyester leisure suit with big floppy pockets for my rosary beads [photo redacted]. I didn't have to go to "Thursday school" anymore, which was two more hours of school after school which was a complete bummer.  I was too weird and asked a lot of questions. I didn't believe or understand any of it, and the nuns didn't seem to want me there.

My grandmother, who worked and lodged at a hotel nearby in the Poconos, also kept a bedroom at my aunt's house where I used to sleep when we went to Pennsylvania to visit. She had some glow-in-the-dark rosary beads on the headboard and, affixed to the wall, was a small wooden cross with a glow-in-the-dark Jesus Christ prostrate but just floating there on the wall. When the lights went out, it certainly scared the bejesus out of me. It was supposed to be comforting, but to me, who craved to be alone, it was disquieting. According to adults, God, Jesus, scores of saints and assorted angels, the Devil, scores of assorted demons, all of your dead relatives, the Easter bunny, Santa Claus and Big Brother were all watching and waiting for you to fuck up. No pressure, though. Nighty night!

I figured it was a good idea to stay out of both God's and Satan's way (not to mention the priests). My parents misguidedly made me go to church when I was in high school until I was eighteen, which predictably enough made me loathe it and everything associated with it. But it did make me curious about what other people believed, after high school, I started reading about world religions.

The first time I heard of meditation was in 1977 when I read about TM and the Maharishi Mahesh Yogi in a book about the Beatles. That's significant because the most famous band in the world introduced countless millions in the west to Indian music and culture through George Harrison's songs, "Love to You", "Within You, Without You" and "The Inner Light". I really liked "Within You, Without You", especially the sound of the tabla drifting in and out of different time signatures.

The Beatles needed some headspace in a heady time. They sought an alternative to the endless party and looked inward after their manager Brian Epstein was found dead in his apartment in 1967. They seemed to find some peace, but the association with the famous yogi to the pop stars would turn famously sour during their trip to India the following year. Still, whenever I heard Paul McCartney or Ringo Starr refer to meditation in interviews, they said it was helpful and that they continued to meditate when they needed it because you can do it anywhere. I noted that and put it in my kid brain to bake for about eight more years. I didn't know any gurus in my town and I would have benefitted greatly from a practice like that.

It wasn't until I moved to Missouri as a teenager that I encountered the idea of meditation again. A teacher named Gene Weathers, a genuinely brilliant guy who, like me, was visually impaired. He taught the program for "gifted" students in my new high school. I was too much of an academic underachiever to be in that group officially, but Gene recognized that I was bright and arranged for me to attend his class during my study hall period. I met friends I could talk to there and I felt a sense of community in my new home.

He said, "You guys have got brains and it's my job to teach you how to live with them." He taught us mind relaxation and imagery techniques. This was brilliant mentoring for teenagers whose brains generally idled a little fast and made it difficult to relax. I needed to learn how to not be distracted by the whirring, buzzing and crackling in my head when I came to rest. I had to learn to be in the moment, which was a challenge. Only when engaged with music did I live completely in the moment. I read a lot of Hesse, Vonnegut, sci-fi, jazz magazines and a bit of anthropology.

He said to me, "Anger will eat you up." He was referring to living with partial sight. I was a teen in a mental health crisis at the time and anxious to start life anew. But this idea of his would rattle around in my head like a little brass bead until it found the little hole in the middle that leads to self knowledge. It routinely slips out and the process begins again. Now I know that succumbing to anger consumes energy that you need to function in life.

He also said, "When in doubt, defer judgement. And then, defer judgement. And then, defer judgement."

I joined a well-known sect of Buddhism and I practiced it for a few years. I chanted and learned a lot from the experience, but there was a lot of magical thinking and a culty vibe from the organization and its members that I didn't care for. The chanting was okay, but there was too much structure and sentiment for me. I thought I needed that, but I found out that I really didn't. I liked the incense and the polished wooden beads. I'm not really a joiner.

Hardships in my life, including the 2008 financial crisis, led me to meditate regularly while I figured out what to do with my life next. I learned how to do it by going to the library and reading books. Among the ones I really liked were by Jack Kornfield and Swami Vivekananda. The former is a present-day Buddhist, professor and author of many books about Buddhism that taught me about Buddhist thought and practice, and the latter a 19th century Hindu monk and philosopher who stressed tolerance of all religious views and was a skilled communicator of ideas. I liked his open mind and positive attitude. My big take away from that period is “Suffering is caused by desire; if you desire less, you suffer less. And we’re miserable because we take refuge in impermanent things, which makes us more miserable.” I wanted to free myself from the prison of ego that perpetuates my ability to bullshit myself.

I tried different kinds of meditation, with a mantra and without, with a god and without. I contemplated emptiness and impermanence as Zen Buddhists do, which I liked. I sometimes devoted entire days to meditating. After a while, I started to feel different. I began to renounce attachments to behaviors, practices and beliefs and to rid myself of illusions. I strove to find objectivity and truth. I shed myself of unreasonable desires and found like a little less complicated and onerous. I earnestly sought to look beyond my likes and dislikes and prejudices to experience things as they are. This is the closest I get to spirituality.

In my patchwork cosmology, I envisioned not a dualistic, omnipresent being who is either utterly detached from human affairs or your best friend, but rather the equation that represents the unifying theory of the universe that physicists and astronomers have sought for centuries. I came to the conclusion it was a good bet that scientists will crack the code. In fact, they're getting closer every day (and let's hope they find it before humanity destroys itself). The universal principle idea has a much better chance of being provable, knowable, objective truth. Consciousness and our sense of self are likely a biochemical phenomenon. These ideas fill me with a sense of wonder, not fear. As long as I have the capacity to learn, I need not despair.

Something in me opened up. Over the next few years, I shed my attachment to eating unhealthy food, drinking alcohol and using tobacco. I stopped participating in 98% of popular culture. I read more books through self-directed study. I learned new skills and created more and more new music. I conquered fears, created more challenges for myself and overcame obstacles. I learned to manage a feeling of self-consciousness that is Kryptonite to the creative process.  I'm still on the same path, seeking the middle way between extremes.

I don't meditate at the moment, but I can do it whenever I need or want to. Am I happy? Sometimes, which in my book is pretty good. I'll take it where I can get it, but that's not the objective of life for me. I want to enjoy what there is to enjoy and suffer what there is to suffer without getting too focused or attached to temporary physical and emotional states. It's how I stay sane, or at least mostly sane, anyway.

After my experience, I realized that you can't just keep meditating expecting to recapture a moment like that. Transcendent moments can't be conjured up or aimed for. If you're just trying to recapture that feeling, you've missed the point. Feelings of happiness and joy are wonderful, but they are also fleeting and temporary. Like everything else, happiness (indeed, any emotion) is a transitory state so don't get too attached to things along the way or you may suffer. Nothing stays the same, so engage with what's happening here and now. Life must be about finding meaning in the here and now.

Ruminating on Food

I was allergic to chocolate until I was twelve. I used to break out in a rash. It was probably a peanut allergy. I had the lame white chocolate Easter bunny every year, but I bit its ass off with gusto, laughing and showing my brothers the teeth marks where the butt used to be. I just took it for granted that I would just have to live without chocolate for the rest of my life. I was struck by how both adults and children reacted to this fact with horror and pity, as though some grave injustice had been committed or as though I had said that God didn't exist. But one day when I was twelve, I went to the drug store and bought a Three Musketeer's bar for fifty cents and took my chances in the name of science. The experiment was a success; I was cured. I had some catching up to do.

So why am I writing about this? Because in the last year I've had experiences of receiving care in both a non-profit hospital and a for-profit hospital. In the former, you get generic snacks; in the latter, name brands. I went for an infusion at the for-profit hospital and I got Oreos and Fig Newtons. I started to wonder what some good off-brand names would be, as inspired by Wacky Packs, the packs of stickers satirizing household products...Oreain'ts (also Ore-no's and Oreoids in some markets)...Fig Noughtons...Twonkies...Rung Dungs (sort of like Ring Dings, but weirdly shaped and kind of tough to chew)...Faux-Hos...Pastykakes...Woozy Q's...did I miss any? My mind goes down dark alleys like this all the time but I'm powerless to stop it. I also started to think about my evolving relationship with food.

We had a walk-in pantry when I was a kid. It had a louvered door. Dry and canned foods were kept in there, including old lime flavored gelatin nobody liked, saltines, oatmeal cookies, instant mash, salad dressing mixes, canned soup, fruit, veggies and Spaghetti-O's, you name it. And all name brands. It was like a showcase on The Price is Right, except the items had realistic price tags on them. The only vegetable matter was in two bins side by side, one with onions and one with potatoes. I was often sent in there to get packs of cigarettes for my parents. We kept the vacuum cleaner and the broom in there, too.

There were no generic food products. It was all name-brands in our house. Apparently that was important. She didn't buy soda because having four caffeinated boys would be madness. She was much more lenient about breakfast cereals and one-molecule-away-from-pantyhose snack cakes, though. I remember a line of the most sugary garbage cereals ever made on a shelf at eye-level. I was hardcore; I ate them dry, no milk, every day and had the cavities to prove it (Apple Jerks...WeariO's...Rice Krusties...Grope Nuts). I experienced sugar intoxication to the point where I reached higher sates of consciousness and could move things with my mind. Today. that pantry would need a hazard warning slapped on a lead lined steel safety door.

That safety door might not have survived the morning that a giant can of fruit cocktail celebrated the third anniversary of the passing of its expiration date by exploding while I was watching cartoons. I didn't know what the hell had happened. They tried to blame me as they usually did when something exploded, but they soon shut up when they saw that a glucose and alcohol bomb had sprayed a thick ectoplasmic slime over every neatly aligned shelf full of premium grocery products, most of which were thrown out, the shelves repapered, the walls repainted, the old cereal replaced by new cereal, the saltines, the potatoes and onions, the vacuum cleaner and the cigarettes and the instant mashed potatoes were seen on the shelves again. Only the lime gelatin from 1972 was finally thrown away for good. That pantry was a diorama of the expansion of the universe reset after the big bang.

My mother didn't like to cook and didn't keep it a secret, but we had decent food well prepared. Her lasagna was very good (whole milk ricotta cheese was the secret). My parents were not adventurous eaters. Lots of Shake 'n Bake, mostly meat, potato and veg. Packaged and processed foods. Nothing spicy. I ate frozen TV dinners when varying schedules mad it difficult to have family meals. I can still taste the Salisbury steak and apple cobbler served in an institutional aluminum foil cooking/serving tray. Cheese pizza on Fridays in Lent (I disliked fish) served on paper plates in shallow basket-like paper plate holders. Sometimes she just couldn't cope and sent us to McDonalds, my oldest brother at the wheel of the station wagon and Earth, Wind & Fire in the cassette player on a beautiful sunny day. Mom liked Champale (later 7-Up) and True Greens. She didn't like Chinese food.

My dad's superpower was macaroni salad. He also made meatballs. We had an indoor barbecue grill in our kitchen so we could cook out in all seasons, and Dad was in charge of the meat. He made scrambled eggs too, but he used milk and I prefer to cook them dry in butter. He loved red Delicious apples only so I never knew about the existence of other varieties of apples I would like better. He loved liver and onions, but the rest of us disliked it so he rarely ever got it after my parents started having kids. My dad was the only one I've ever known who didn't like pizza. I remember cans of Miller (later Fresca) and packs of filterless Pall Malls by his chair.

On weekends, I could have a can of soup, Spaghetti-O's or a couple of hot dogs for lunch. Somewhere in my childhood lurks the trauma of eating the hot dogs with cheese injected into them, the culinary equivalent of seventeen years of Freudian analysis. I remember a New Years Eve that fell on a Sunday, which meant I could stay up to midnight for the first time and would see Monty Python on public television and at least try to make it to midnight. Every year we had little frozen egg rolls and "pigs in a blanket" with tiny forks and  cocktail sauce and my brother Chris made popcorn. Happy 1979!

I didn't start eating generic food until I left home. I was running a band so I certainly didn't have any money. It's good that I didn't have a craving for great food because I found precious little of it. I learned that in the absence of milk, you can crack in an egg to the cheese powder mix in a $.25 box of macaroni and cheese and stir it in to the pot of macaroni at medium heat so the egg cooks. It was very passable. I cooked ramen noodle and added ground turkey and generic creamy Italian dressing. Sometimes it really hit the spot and I felt like a king. I would get together with friends and make large pots of pasta or soup. One of my roommates and I would always buy big sacks of potatoes. His superpower was gumbo.

Every Friday, the band I was in would go to a bar in the suburbs for free happy hour eats. The room was full of musicians lining up for pizza, hot wings and toasted ravioli. It kept us alive in the summer of 1993. I remember several pot luck affairs for starving musicians and made good friends and connections I wouldn't have made if we were all well off. All-you-can-eat places are soup kitchens with beer for area musicians.

As an adult, I learned that food could have more flavor from professionals who worked in kitchens. I would often be fed by whatever venue I was performing in because food is all you get for a night's work sometimes. That's how I first tasted Ethiopian food. I had a mystical experience eating a Jamaican jerk rueben on black bread with sweet potato fries after I came offstage on night. It really knocked me out. I developed a passion for hummus and all middle eastern dishes. I found that I liked asparagus. I appreciated food more. After all, it was at least partly responsible for keeping me alive up to that point.

My now passed-on, sort-of-father-in-law was an artist and knew a thing or two about starving to death. Until relatively recently, St. Louis was affordable and he praised the city as a great place for artists to hide out under the radar and be able to afford food and rent so they can do their work. He was right about that. He also told me that Hostess fruit pies were "the perfect food". He wasn't so right about that, but the eight-year-old me was on board with the idea, especially the apple pie.

I learned to eat better and stopped abusing my body. Like a lifelong scoundrel who resorts to prayer and reform late in life in the hope of deliverance, I too renounced my ways and stopped being a human garbage disposal in my forties in the hope that I might prolong my life past the point that I can afford to maintain myself, which is just as American as...well anyway, that's a good place to wrap it up.

A Few Notes from the Bus

When you’ re the only passenger, the bus becomes an enormous limo.

"I was on the bus..." I have a few stories that begin that way.

I've been riding the bus in St. Louis for 32 years because I can't drive a car. You really get to know the place from that vantage point. People talk about what a dangerous place this is, but in all that time I've seen exactly one fight on the bus. Most people are going about their day, eager to get to work or to get home. Most people say please and thank you and try to stay out of each other's way. Many are swiping through their phones. No guns, no violence, no weirdness (so far). I always thank the bus driver when I exit, even if they're rude.

Bus stops provide practice for learning patience and the riding experience itself teaches lessons about tolerance and compassion. I know from experience that making it in St. Louis without a vehicle is very challenging, but we're all going where we need to go and we're doing it together. We are all equal on the bus. I like the down-to-earth vibe of riding public transportation.

Sometimes I overhear things or have brief encounters.

I was at a bus stop in a rough part of town, waiting with a group of teenagers. I wear a pair of red filter sunglasses that are pretty conspicuous.

This one kid says in a quiet, deep voice, "Them shades are hard."

I got it. I thanked him, but inwardly I felt like the oldest, squarest, uncoolest guy on the planet, like I was expected to say, "Oh, well golly, thank you very much, young man!"

"Always take a tissue witchoo!" I overheard a father say one day to his young son. Wise words.

I got on the bus one day and the woman behind the wheel offered to sell me a doughnut. "It's not included with the fare?" I asked. "No, thanks." Like I'm gonna eat bus doughnuts. Not without a city health inspection.

Once I was on the bus and the driver pulled over, got out of the bus and went inside a Kentucky Fried Chicken to order his lunch. We waited patiently for about ten minutes until he got back on the bus and resumed his route.

Once I was on the bus reading my Kindle and I heard voices from the seat behind me.

"Aw, he readin'." the guy said. "He readin' the Bible." For a second I felt the halo over my head.

"No he ain't," said a female voice. She was right. I was not as innocent as I seemed. I forget which book I was reading, but it wasn't the Bible. Probably a Russian novel back then. Probably something about human wretchedness.

For years there was a guy on the bus who sold bootleg DVDs out of a backpack. He had menus of all the movies he carried and passed them around the bus so people could choose. He also had candy bars and other snacks. Then he would collect three or four bucks for each movie. I saw him one day when he wasn't selling movies. Instead, he was giving his thoughts about scripture, mentioning that he was a minister, saying "But the Bible says...". Apparently selling pirated movies was just a side hustle and not his true calling. Hey, whatever you have to do to survive.

That’s my ride.

I taught night classes in a school that required me to commute for an hour and forty minutes each way. I would go home, sleep a few hours, grade papers until dawn and get on the bus and rail again for a morning class. One day I fell asleep on the bus. The driver recognized me and asked the other passengers to wake me up so I could get off at my stop. All I remember hearings is a bus full of people yelling, "Hey, man!" When I opened my eyes, everyone on the bus was looking at me. "This is your stop!" Bewildered, I thanked the driver and got off. That was one perceptive bus driver. I love it when people do something kind when you don't expect it.

I was on the bus once in the dead of a cruel and icy winter. Several people lined up to get on the bus, including a mother and her very young child, dressed in a snowsuit with idiot mittens and a ski cap. The guy in front of her helped her small child on to the bus by gently grabbing the child's hands and lifting him gently onto the first step.

The mother admonished him, saying "You shouldn't grab other people's kids like that. You could have been trying to take him."

He scoffed, "I ain't gonna take your kid. Hell, you could have one of mine!"

My friend N. was visiting from Europe and we rode the bus to get to the Metrolink so we could go downtown and ride the tram up to the top of the Gateway Arch. The bus was unusually full and noisy that moist spring day. Lots of hooting and loud laughing. I turned to her and said, "How do you like the bus so far?"

Just then, a guy who had been presiding over the ribaldry said, "God damn! I want a steak dinner with a Gatorade!"

Amen, brother. I hope you found it.

Dark Glasses and All That, or How Stevie Wonder Inspired me to Create the Music of My Mind

When I was born, I had a pronounced squint and nystagmus, the latter of which improved but never completely went away. The squint was a reaction to bright light. As I got older, it was discovered that I was unable to distinguish colors. These are two classic symptoms of achromatopsia, a rare congenital condition. I also had poor visual acuity. From the age of six months until I was six years old, I wore ultra-dark prescription sunglasses.

Me in 1973. I was crazy about that toy helicopter.

My parents let me watch a small Sony black and white TV on the kitchen table so I could sit up close enough to see. I watched a lot of PBS, as did millions of children in the U.S. when educators, producers, performers, musicians, composers and artists applied their passions, skills and talents to create quality programming for children that educated and entertained. I was fortunate to be part of the noble experiment. All of the new shows had fantastic music.

On April 12th, 1973, I saw Stevie Wonder perform "Superstition" on Sesame Street and it was a pivotal moment. He wore dark glasses like me, and he was kicking some serious ass playing and singing with his band. His performance of "Superstition" completely blew my little mind apart. There he was, lost in the music, singing with palpable soul and emotion and the band is just killing it!

I gazed at the instruments and amplifiers and watched the body language and physical motions of a group of black and white musicians making music together. Hands, heads, elbows and fingers moved in tandem and accord while little kids danced around and behind the band, getting down in the truest sense and feeling the music. This was absolutely the coolest, hippest, most off-the-hook thing I had ever heard or seen in my short life. He also played a song where he sang using a "talk box", a new piece of electronic gear that made his voice sound like a singing robot, which completely knocked my socks off.

In 1976, my brother Ray, a budding trombonist and arranger, got Stevie's seminal album, "Songs in the Key of Life" as a Christmas present. I heard and loved all of it. "Sir Duke" and "I Wish" and "Isn't She Lovely" blared from every radio the following year. Ray wrote a big band arrangement of "Knocks Me Off My Feet" that was performed by a large ensemble of young jazz musicians that included himself and my brother Tom (also a trombonist), called Collage. They went on a European tour in 1978.

I heard Ray working on the arrangement at the family piano with a blank score book and several pencils. He learned the tune from the record and wrote it all out. I heard the song go from being a record to the piano to the arrangement to a performance. I had big ears and a great behind-the-scenes view of the processes involved in making music.

In the summer of 1977, I was taken to the record department at the Caldor department store in our town for my birthday to buy an album of my choice. They had a great record department where I would shop for jazz reissue vinyl and Beatles import LPs in my teens. I picked Stevie Wonder's Music of My Mind, a very personal album from 1972 and the first of four musically and technologically groundbreaking albums he made with electronic music duo Malcolm Cecil and Robert Margouleff, who were also the engineers and associate producers.

I loved it. I loved the playful and funky vibe, the soaring melodies, the emotional singing, the gorgeous synthesizer sounds and textures, the rippling Rhodes electric pianos, the trippy effects, the inventive arrangements. It was an album-length experience that simulated what it was like being inside Stevie's head, and it had musical continuity. Unlike his next several albums, there were no monster hit singles on it.

I responded to the deep groove and the "talk box" vocal effect on "Love Having You Around". He used these incredible Clavinet overdubs to sound like acoustic guitars on "Happier Than the Morning Sun". My heart swelled with the beauty of "Superwoman/Where You When I Needed You", a medley performed with such yearning intensity that it made me feel loss and loneliness I hadn't experienced, as only music can. It still gives me the chills every time I hear it. I was entranced.

In third grade, the Scholastic book fair came to my school and I had money to buy a book in the lobby after lunch. I chose an illustrated biography of Stevie Wonder written for children and I learned about his life. It told the story of how he lost his vision as an infant because he received too much oxygen in an incubator, a all too common occurrence for premature infants in 1950. I read about his life as a child prodigy who was able to play several instruments and had a string of hit singles, most of which were written by Motown staff writers. The book had these great photos showing him playing harmonica, keyboards, drums and singing on stage and in the studio making records. That looked like fun.

I learned about his artistic emancipation from the Motown assembly line when he turned twenty one and renegotiated his contract to give him complete control of his recorded work and how he wrote his own music and played many of the instruments on his albums himself. And the words, "Wow, you can do that?" echoed round and round in my head, encouraging new neural pathways to form in my eight-year-old brain. I began to formulate a plan.

The dark glasses were so significant; I wore dark glasses too. I met and befriended totally blind kids in the Head Start program when I was five and I knew and understood that Stevie Wonder was completely blind and faced challenges I didn't face. When I entered grade school, I switched to tinted lenses that weren't quite as dark but that was about the time when I started to get hell for them from the other kids. I knew I shouldn't be ashamed of it but at the same time, I didn't want people thinking I was blind because the message I got from my classmates made it seem like blindness was something that was socially undesirable.

People with visual impairments who are not completely blind straddle two identities: "partially sighted" and "legally blind". The former emphasizes the use and reliance on the vision I use to make my way in the world, while the latter emphasizes the things I can't see, do, or control. It's a schism that splits the psyche in two, a struggle to identify as either abled or disabled, a balancing act between my expectations of myself versus the expectations that others have of me. Lots of "either/or" and not enough "both/neither". I resisted being pigeon holed. It was fitting practice for adulthood.

But Stevie Wonder smashed boundaries and expectations. Here's this guy on TV, cooler than hell, making this incredible music and everybody loves him. He also advocated for himself and his art. I identified with him because he loved music and wore dark glasses like me and his blindness didn't matter. People didn't stare and make fun of him for looking different. In fact, they paid to see him perform. His music was transcendent. Stevie Wonder was someone I could look up to and identify with, and I imagined what kind of music I would make if I had access to the technology.

The economics of the art and business of music and technology have undergone seismic changes since 1973. Getting control of the costly equipment needed to produce records meant going through the gate kept by record labels. In exchange for access to the tools, Stevie was expected to make Motown's investment worthwhile by making them a lot of money. He was only twenty one. if his new artistic vision had failed to sell, he risked losing his keys to the kingdom (a realm where studio time is limitless). That took guts. He had clearly already heard the music in his head.

My eight-year-old self would be thrilled to know that in the future I would have my own studio. Advanced musical and technological tools to make great recordings are widespread and cheaply available in the twenty-first century and the market for music has become exponentially crowded with tens of millions of artists like me competing for attention. But with obscurity and diminished returns also comes a measure of independence; I have access to the tools I need to make whatever music I want to without commercial pressure.

Music is a powerful force. It can jump out and grab you, even through a tiny black and white TV with a crummy little speaker in a suburban kitchen in southern Connecticut, to stir your imagination and inspire you to overcome obstacles and strive to create something of your own.

Thank you so much, Stevie.

The Crisis at KDHX: A Musician's Perspective

In the summer of 2023, I had a lot going on. I had health problems and spent some time in the hospital. The day after I was discharged, I released my self-titled EP, which began to get lots of airplay from several DJs at KDHX, St. Louis' community radio station. Within a month of release, I got so many spins that I made the NACC airplay chart (the chart for college and community stations). That's pretty incredible for airplay on only one station.

People were hearing and responding to the music I had worked so hard to produce and I was very gratified because music is how I communicate and KDHX was the medium in St. Louis. The airplay and feedback made my lot a little easier to take and gave me hope. While recovering, I had finished a new Corpus Alienum album of instrumentals and it was ready for release by the end of the year. Things were looking up.

And then it all stopped. All that airtime suddenly ceased. My plans for a new release were disrupted. My support vanished and the further development of a growing audience for my work in St. Louis was not realized. The Powers that Be at KDHX had pulled the plug. This state of affairs has hit me hard, as it has the rest of the community of musicians in St. Louis.

Most of the DJs who had supported me were fired, the rest walked out, and by the end of the year two DJs who remained with the station abruptly stopped playing my music, most likely because of public statements I had made criticizing management. This was no longer community radio; it was gatekeeping, something that is entirely antithetical to the spirit and purpose of community radio. So much for their claim to be "here for the music".

I have deep roots in community radio going back to 1981 when I volunteered at WPKN in Bridgeport, Connecticut at the age of eleven. I learned audio production there and heard all kinds of music. I met the djs who lived in my community who came from all walks of life. I learned about other cultures and the importance of diversity, equity and inclusion firsthand from people who really walked the walk forty years ago.

They allowed me to volunteer there, a kid with a visual impairment with no experience. I was embraced and encouraged to learn. I felt like I belonged somewhere for the first time in my life. It opened my eyes to new ways of being and experiencing the world. That commitment is alive and well at WPKN today. That's how a functional community radio station operates under the principles of DEI.

In 1987, two years after I moved to St. Louis, KDHX began broadcasting. I was excited to see a brand new community radio station in my new home. It gave me hope that a station not dissimilar in spirit and practice to the one I had left in Connecticut was taking root here. As I got older, I met, worked with and befriended some of the volunteers. When I started working as a musician and making recordings, I benefitted from radio support from KDHX. I enjoyed listening to many of the shows. I donated to KDHX when I could barely afford to feed myself. It was my community radio station and I was proud that it existed in my community.

In the wake of mass firings and groundless accusations against their programmers, KDHX has lost one third of their donors and the ratings are in the toilet. The station I love is now a sinking ship with cardboard sails. I take no pleasure in saying that. It has been a vital lifeline to musicians across the region, giving crucial airplay and exposure to acts that would have gone unheard. St Louis' musicians seem to be expendable in the forging of their "bold new vision".

I and other St. Louis musicians have been effectively sanctioned and silenced. I don't know if KDHX will survive. I hope it will. That's why I signed the Musicians' Call for New Leadership of KDHX petition. Their war on their own volunteers is a war on the musical community that those in charge of KDHX profess to nurture and serve. They must be held accountable for the damage they have wrought on an institution vital to St. Louis' cultural life. If the station fails on their watch, on their heads be it.

10th Anniversary Edition of Corpus Alienum's Dark Signal

Dark Signal 10th Anniversary limited edition CD

February 11th marks the tenth anniversary of the release of Dark Signal, the first Corpus Alienum release from 2014. A new expanded edition with four extra tracks is available to stream and a limited edition CD is also available at Bandcamp. All download and CD sales on Bandcamp will benefit the National Multiple Sclerosis Society.

Click here to buy the CD on Bandcamp. You can also buy the CD directly from me on PayPal by sending $10 (or more) + $4 shipping to jkenkase@gmail.com. U. S. shipping only. Be sure to include your address.

Dark Signal was originally an EP of five selections that hung together as a suite. All of the pieces were borne of improvisation at the keyboard and overdubbed until they seemed complete. Nothing was planned ahead of time.

The cover is a photograph I took of Maggie Panian, the daughter of dear friends of mine, who was six years old at the time. We sat together playing with various small toys when I got the idea for a 1950s-style horror movie forced perspective shot in which a giant little girl is seen getting ready to eat a seemingly tiny dinosaur. She was a good sport and she gave me the perfect cover for an album of weird music.

It was my first public foray into music that could be described as avant-garde and reflects the influence of electronic, classical music and jazz that hitherto found no outlet in my work. While working on songs that would become the Ken Kase EP, I became disenchanted with the process of writing and recording pop songs and sought to do something entirely different. Recording this music put me on a new path. It would be a decade before I would release some of the more traditional songs I was working on at the time.

The opener, "Echopraxis", a term that refers to a symptom of mental illness marked by the involuntary imitation of the actions of others, fittingly owes much to twentieth century composers Edgard Varèse, Frank Zappa and John Cage. The "ensemble" is a group of sampled east Asian percussion instruments played via a keyboard. There's an improvised call and response between the percussion instruments and the overdubbed electronic sounds. There are three tracks in total, all improvised first takes. This piece could be performed live with a conductor and it would sound different every time it was performed.

"Scrutiny" was inspired by the work of Weather Report keyboardist Joe Zawinul with a little Miles Davis. I used a sampled Fender Rhodes electric piano sound through a ring modulator effect to get a sound like Zawinul used in the early 70s. I recorded the "melody" after laying down the chords and percussion with an improvised electric piano part at a slow speed and then brought it up to tempo so it sounds super fast. The the melodic content is scrambled by a ring modulator detuning effect that allowed me to play the keyboard as a rhythm instrument.

"Synostosis" is the only composition in the suite that has a singable melody. It is meant to be a musical and sonic relief from the intensity of the other pieces. Synostosis is the process of two bones forming together to make a single bone. No deep meaning here; the title just sounded good.

"Agnosia" was put together visually. I arranged the STEMS in Logic Pro so that they formed a visible pattern and symmetry that sounded right. The title is a medical term that means an inability to recognize sensory information due to brain damage. The music came first, the title came later. I was looking in scientific glossaries trying to find interesting titles and found the perfect match. It sounds like sensory information gone awry to me. The electronic sound that hints at the sound of human speech is me speaking into a microphone and using effects to distort the hell out of it.

"Dark Signal" started with a sampled percussion part through an envelope filter and delay. The chords and melody were also first take improvisations. It owes its influence to Charles Ives and Karlheinz Stockhausen. The "melody" was created using a patch that has microtonal intervals that give it an eerie sound. The electronic sounds that moan and wail were overdubbed later so I could give myself a chance to forget what I had laid down weeks before and come to the piece with renewed perspective. It sounds like the soundtrack to a suspenseful movie.

The four compositions that make up the "Bonus Track Suite" were recorded around the same time as the original release. "Breath" is an electronic piece intended for piano and string orchestra that was written and recorded in 2010. "Static" uses ring modulation to distort the tolling bell pulse that happens in most of the piece and it ends with a soothing synth pad that includes the sound of crickets. "Detainment Lounge" was recorded shortly a year or two after the EP was released and has a sampled sound of film library music from the 50s that was added during the Mind Control Dance Party-era. "Fissure" is a drone piece with 6/8 feel like an Irish jig.

This may be my least loved album, but it's my favorite because it took me to a whole new place artistically. Nobody really heard it and I'm sure that a small number of people who did hear it probably didn't know what to make of it or care for it. But there are a select few out there who really liked and understood what I was trying to do. For me, it was a break from my normal compositional style that opened me up creatively.

Ten years later, I've made four Corpus Alienum albums in total, all of which have roots in this project. In a way, it's my greatest personal accomplishment because it took me into uncharted waters and inspired a whole new mode of expression. I hope you enjoy this expanded edition to celebrate the tenth anniversary of its release. It is the album I'm most proud of.

The Heavy Metal Years: 1982-1985

Me with my first bass in 1984. An incredible moment of rock’s power.

When I was thirteen or fourteen, I remember hearing a widely dubbed and passed along cassette tape of a preacher with an evangelical twang in his voice speaking on "backwards masking", the conspiracy theory that claimed that rock bands were putting Satanic messages recorded backwards in their songs as a form of Devil-directed mind control. He played rock records backwards to decode the subliminal messages and then he told the audience what the messages allegedly said. Mostly it was gobbledegook. This batshit crazy idea claimed that the mind could somehow decode the scrambled backwards messages to receive instructions to become Satan's minions in a war on Christianity. It was really that bonkers. Medieval thinking is enduringly popular in every epoch, and appealing to superstition is always lucrative.

A meme that’s making the rounds on social media captures the terror and the madness of the early 80s in America.

American culture was changing in the early eighties. It was a nauseating blur of televangelists, preppies, yuppies, assassinations, attempted assassinations, music videos, multi-level marketing schemes, tainted Tylenol capsules, slasher movies, Reaganites and Pac Man. There were rumors and fears of satanic cults connected to heavy metal music and there were lawsuits seeking damages for teen suicides that families believed were caused by exposure to music. Tabloids got stories, lawyers got rich, records and tickets got sold and at least one bat got his head bitten off.

The "Devil's music" thing was a tired, centuries-old saw. There's a 16th century folk tale in which a mysterious traveller offers to play his violin for his food and shelter in a convent. The impossibly sweet and tender music he played made the nuns weep, regret their vows and long to bear children. It was the Devil's own music that did it! Sounds much like what happens when Led Zeppelin is in town.

After all, Lucifer was a great musician, the concertmaster of Heaven. It was a steady gig, but he had to suck up to his boss all the time, so when he got fired, he founded the music business. Nineteenth century violin virtuoso and composer Niccolò Paganini and bluesman Robert Johnson were both said to have made deals with the Devil for their considerable chops. Business was brisk.

Old Scratch playing with fire in a candid moment.

All of the stylistic developments of popular music in the 20th century were said to be the Devil's music by preachers and politicians, including ragtime, jazz, blues, rhythm and blues, country, rock and roll and its offshoots, and hip hop. There really is nothing new under the sun.

Anyway, in eighth grade, I found a new friend in Matt when I was in the drum section in the school band. He was new in town and he asked me about playing bass in a metal band. I told him I could do it. I used to go to his house where he had a drum kit with a double bass drum setup (the brand name on it was U.S. Mercury). His sixteen year old brother, Greg, was a really good guitar player who had an Ovation Preacher and a Strat. They were into metal. Predictably, they lacked a bass player. In heavy metal, nobody wants to be the bass player. I saw it as an opportunity.

Me and Matt Orred. All of the photos I have of us feature holding random objects.

Matt was a really promising drummer and a good friend. He had moved to my hometown in Connecticut from Minnesota via New Jersey. They kept a healthy stock of two-liter bottles of Triple Cola, a south Jersey local brand they swore was better than Coke (people had strong opinions about soft drinks in those days). On the wall in their country-style kitchen hung five straw-like letters that spelled the words "Uff da", which he said is Norwegian for "Oh, shit!". It's more like "oops", or used to express surprise or astonishment.

My only prior exposure to the Minnesota/Norwegian milieu was watching Davey and Goliath, the Lutheran-produced stop-motion animated Christian show about Davey Hanson and his talking dog, Goliath. The show presented stories with a broad moral lesson about universal values like respect, honesty and responsibility and invoked the name of God only sparingly and in very general terms. For a while when I was a kid I thought God might be Norwegian. I can just hear him saying "Uff da!" after creating the universe.

Davey and Goliath recovering from a stunt accident on the set in 1961.

I came from a musical family so we had various instruments in the house which I taught myself to play. So I knew how to play bass, but I didn't know much about heavy metal until we got MTV on cable television that year. Metal's image-making and posturing seemed a bit silly to me, and while it wasn't my favorite music, I saw a chance to have friends who valued me and an opportunity to play really fucking loud.

We would jam downstairs in Matt's basement, playing entirely too loud. It's amazing I can hear anything after that assault on my thirteen-year-old ears. I wouldn't have a bass until Christmas that year, so I played their dad's bass, which was a hollow body bass with nylon coated strings from the sixties. It was absolutely the un-coolest bass to be seen with in the eighties. I plugged into an old but loud Sears P.A. (until we blew it up eventually). I played Paul McCartney's bass riff from The Beatles' cover of "Dizzy Miss Lizzy" when we played Chuck Berry's "Johnny B. Goode" and they both really liked that.

Chris Ahillen, me and Matt Orred, again inexplicably holding objects.

Greg moved on to play with older players and Chris, another guy from school, joined us. He was still learning guitar and had to catch up with us. I remember he was eager to play well and he did get better. He was a really nice, clever guy who was very good with electronics. I remember seeing the first little Macintosh computer in his bedroom and he played us a very crude, lo-fi digital sample of the opening of Led Zeppelin's "Black Dog" and we could hear it through that tiny, crummy speaker and we were amazed. Chris refused to say how he did it. He was kind to me and the three of us had fun together going to the movies and playing music and talking about guitars. Chris moved to Normal, Illinois and died of a heart attack far too young several years ago. I'm thinking of you, old friend.

Chris Ahillen 1969-2016

At the community radio station where I volunteered, I heard the Clash, XTC, The Ramones and Thomas Dolby and a ton of jazz but learning and playing Rush, Ozzy Osbourne, Scorpions and Van Halen. I realize now that it was good training for being a working musician. I don't have to so invested in the music to enjoy playing it, or at least endure playing it. Sometimes it's fun to make any kind of music.

I remember playing Quiet Riot's cover of Slade's "Cum on Feel the Noise", Ozzy's "Crazy Train", "Spirit of Radio" by Rush, "No One Like You" by the Scorpions, "Panama" by Van Halen and "Run to the Hills" by Iron Maiden. All of these songs had incredibly challenging vocals and we didn't know anybody who could sing like that, but we progressed as a rhythm section and got tighter and tighter. We were kids learning about how being in a band works.

By the time I left Connecticut, we were pretty good. The Rush tunes were the most interesting ones to play, with their unique structures and compound time signatures. I was so elated when we worked on and played "Freewill" and got all the way through it for the first time without stopping. I learned that working with a group to accomplish a goal and making it happen comes with a blast of endorphins that makes you feel out of this world. That feeling of accomplishment is addictive, and you can only satisfy it by taking on more challenges together. That's how you become a better musician. I see now how formative the experience really was.

“This is definitely not a jazz box.” Me in 1985

This was all very good for me on many levels. I had problems at school. I was bullied and assaulted and it was hard to learn when the stress level was so high every day. I started to burn out. I had a few allies, but I needed as many friends as I could get. Matt offered a lifeline. He respected and valued my skills and touted them to my peers. I remember when I rode his moped forty miles an hour down our street. It's not everyone who would give his scooter to a half-blind guy for a spin. That's trust.

Despite heavy metal's reputation as a destroyer of youth and a menace to society, neither I or my friends became interested in the occult, nor did we participate in any secret ritual ceremonies, form a coven, perpetrate a war on Christianity or burn the Bible. In fact, just the opposite happened; we played some music, and we learned about cooperation and collaboration and, not least of all, friendship. I found friends who valued me and that helped a lot. Hmm...respect, co-operation, friendship...sounds just like the end of a Davey and Goliath episode to me.

“I have been diagnosed with multiple sclerosis.“

Willmore Park, St. Louis, MO

When I had my first MRI last summer, they asked me what kind of music I wanted to hear. I foolishly said "jazz" and got forty five minutes of smooth jazz. It was like being on hold with your insurance company or sharing a hot tub with Kenny G. For my second MRI at another hospital in October, the technician asked me what I wanted to hear and, having learned my lesson, I said, "classical". "Which artist?" asked the technician. That surprised me. "Beethoven."  You can't lose with him.

So I was in the MRI machine, listening to the buzzing and clicking noises and hearing them as a musical composition rather than just a series of noises, something I do sometimes in noisy environments. Then the clicking and buzzing would stop and I could hear Beethoven very faintly in my headphones. Then would come another wave of electronic noises, the next movement of the Concerto for Magnetic Resonance Imager, followed by a few seconds of Beethoven again, and always a different tune.

It was basically Beethoven's greatest hits: "Für Elise" and "Ode to Joy", one of the piano sonatas, (I forget which one), but when I heard the funeral march from the second movement of the third symphony, I started laughing, That's usually played at state funerals and not what you want to hear when you're stuck in that long, noisy tube in the hospital with God knows what's wrong with you. For about sixty seconds it sounded like Leonid Brezhnev's memorial service in there. And then the buzzing and clicking resumed. For a few moments I felt like I was going to be all right, but I still had to keep still and stop laughing...

One Saturday morning in April, 2002 I woke up to find that the vision in my right eye was dark and blurry. It got worse as the morning went on and my vision grew darker and fuzzier. By the time I got to the ophthalmologist's office for an emergency appointment, I was completely blind in my right eye.

The doctor told me that it could be the onset of multiple sclerosis. He said I had a 75% chance of getting my vision back naturally. He also told me that steroids could be used to help restore the vision I had lost but he didn't recommend it. My vision returned to an extent; there's a blurry hole in the center of my vision in that eye with only sketchy peripheral vision. I was told to watch for neurological symptoms for the next several years. So I watched out for declining motor skills, nerve pain, or mobility problems.

Losing most of my vision in one eye was tough to take because I've had achromatopsia, a rare visual impairment, since birth and I relied heavily on the partial vision I had. It felt as though I had won the lottery twice. But the years went by and the neurons in my brain compensated for the vision loss and I was able to get around much as I had before, albeit with a large blind spot to my right. Gradually, the reality of having MS seemed more and more remote as no other observable symptoms developed.

No other neurological symptoms presented up until 2023, when an MRI I had while I was hospitalized revealed brain lesions. A spinal MRI a few months later reveled lesions on my spinal cord as well. Just after Thanksgiving, a spinal tap confirmed it; I have been diagnosed with multiple sclerosis.

My immune system is attacking healthy cells in the lining of my brain and spinal cord, waging an ill-advised war on my own body, and it had been going on for a couple of decades. It's unsettling knowing that there's a destructive process going on within you as you roll over in bed, open the refrigerator or put on your socks. This experience has renewed my gratitude for the fact that biological and neural processes work in the body without my consciousness of them (until something goes wrong, of course).

The good news is that I've been mostly symptom-free for twenty one years apart from the diminished eyesight. I'd like to keep it that way. I have one functional eye left and my motor skills are still undiminished. The treatments available today are far superior to what was available twenty one years ago and will likely protect me from damage caused by further outbreaks, but they come with a risk of increased vulnerability to infection so I'll have to be careful. I'm going with science as the first line of defense.

I've decided to go public with my diagnosis because I'd rather be honest and open than stoic and secretive.  I used the term "stoic" in the common sense of being seen as long-suffering, bleak, and emotionally repressed. As for actual Stoicism, I'm drawn to Epictetus' principle that emphasizes the distinction between the things we can and cannot control and to try to focus our attention and energies on the former rather than rage and lament about the latter. Experience teaches me that understanding that difference is essential to good mental health. It is, in fact, how I keep from going nuts in times of crisis and struggle. To me, it's the most sensible approach to coping with stress I've come across.

I can't control the genetic or environmental factors that caused my various disorders, but I can take care of my mental and physical health and choose treatment options that work for me. I can eat a good diet. I can exercise more. I can protect myself from infection. I can make it work. I can create more music and embrace challenging new projects. I can raise money. I can do what I can and not agonize about everything else. Absolute free will is highly doubtful, but we do have a certain amount of autonomy despite the limitations of our heredity and environment. That "zone" is the realm where you can affect change for yourself and others.

All of this sounds great, but accepting a new reality is a process. I am still learning. I am not a fountain of wisdom and good judgement all the time. I feel conflicting emotions about the road ahead every day. I worry. The new reality is stressful on both my partner and I. It means some changes have to happen. But I'm very aware that there are untold millions of people in the world with far heavier burdens than mine. My road hasn't been easy, but I have a home and workspace and access to health care. Many in my own community don't have those things. I'm fortunate and I know it. By being open about having MS perhaps my words might speak to others who are battling the disease, and to those who might consider supporting MS organizations.

After a year of illness and new challenges, I have more perspective on my life and a better understanding of myself than I've ever had. My knowledge and understanding of the biochemical/neural "me" has been recalibrated and I have to adapt to developing realities. Things still need to be done, and I will keep producing and releasing albums until I drop dead, whenever that might be. I want to grow to be an old bastard and leave a few albums behind when I'm gone. What else can I do? Nada, nada, nada, not a damn thing!

Please consider donating to the National Multiple Sclerosis Society by clicking here. Their website has great information about the disease and available treatments and is an invaluable resource for patients and families. You can also learn about financial resources and programs available for patients in need.

All About Corpus Alienum's "testing, testing..." Album

Corpus Alienum’s fourth album, “testing, testing…”, will available on Bandcamp and all streaming services 12/11/23

Every two years or so, I look on my hard drives to see if any music lurks there in need of finishing. In this case, I started working on the new album after I got out of the hospital last summer. I worked on it for weeks as I got my strength back. When it was finished, it felt like a victory.

"Uncle Festus" was written for a friend who used to live in a cave in a town in Missouri called Festus. Really! He build a wood frame house in a limestone cave and lived there with his family for many years. It's a town that's about fifty miles from St. Louis--not the cosmopolitan kind of place one would normally associate with a funky soul groove, and maybe not a place on my radar if I didn't know someone who lived there. The tune came to me on my way back from visiting him. I associate Festus with good times shared with close friends. Curt is very friendly and sometimes avuncular, so from Uncle Fester on the Addams Family, I got to "Uncle Festus".

The recording was pretty easy. My truly gifted brother Chris Kase recorded his trumpet parts in his home near Madrid. In fact, getting guest soloists to be on the album came to me when I was working on this tune. I was tired of being the only improvisor on Corpus Alienum albums and thought the music could use some variety. The robotic funk groove gives way to a Steely Dan-inspired chorus. It's for butt shaking.

"Legend of the Melonheads" is a reference to a suburban myth in my hometown in Connecticut, which you can read about on Wikipedia. The melonheads (my spelling) are bulbous-headed creatures who attack people in the woods of Fairfield County, Litchfield County and New Haven County. I thought it was time they had a tune of their own. It began with me improvising on electric piano over a repeated bass line and drum loop. I literally made up the composition as I went along. It's what the Melonheads sound like to me. It could be their national anthem. This was the very last tune I wrote for the album at the last minute.

"Shawskank Redemption" is a tune I wrote when I was listening to a lot of African guitarists like Barthélémy Attisso from Orchestra Baobab, Mdou Moctar and Vieux Farka Touré. I love the rhythmic tension and the open, uncluttered space for soloing of ska and have returned to it time and again. I have nothing but love and respect for all the styles of music that I imitate here in this cultural mashup. As for the bad pun, if you know, you know. Fantastic solo from Dave Farver on tenor sax. He really takes it into the stratosphere.

"Here Comes the Asteroid" is an expression used by people I know. That the human race, along with most life, could be wiped out at any moment by external cosmic forces is a distinct possibility and our troubles would suddenly seem insignificant. I had 16 bars recorded when I revisited this idea and fleshed it out, fresh from the trauma of being hospitalized that summer. The organ solo captures the pure, spitting sarcasm and rage that I felt when I recorded it. It was my response to a summer of trauma. I was inspired by the asteroid that crashed into my life.

"Lost My Glasses (Trumpet Mix)" featuring Chris Kase on trumpet is a cycle of key changes. I loved adding the delay and taking out the drums under his solo, making it sound like he’s falling into a gorge. It also has a field recording of the Metrolink light rail service in St. Louis. I actually did lose my glasses after a night of gigging and drinking downtown and had to make my way back home on the train and the bus while barely able to see anything. It was all a bit melancholy.

"Rinn's Refrain" is named after Rinn Netherton, a violinist here in St. Louis who is an adept improvisor. I took this groove from the archives and spruced it up for Rinn to solo over. I told them, "Don't be afraid to hit blue notes and it's okay to be a little tragic." What you hear is Rinn's reply. There's nothing quite like the thrill of hearing youthful imagination and virtuosity, especially when you're in the room when it's happening.

For "Decadence", I envisioned a scene of artificiality and excess, a noisy, hedonistic gorge by impossibly grotesque revelers. The sound of noisy consumption and bilabial gastrointestinal effects were provided by cartoonist John Blair Moore and myself on a sunny day several years before he died. And now he's captured forever making mastication and farting noises on my album. He would be pleased. Dave Farver delivers another great performance on tenor sax.

"Cold Snap" is a a sister composition to "Fireflies" on Mantovani Boogie Man. It was a cold, cold day and that's what it sounded like. A seasonal portrait. One of two "chill" tracks on the album.

"Shakes" is a rock instrumental tune that was stuck in my head for a few days before I finally recorded it. It has a middle east modality in it, which seems to be a thread running through some of the tunes on the album that feature guitar.

"Beach Bacchanale" is adapted from Camille Saint-Saëns' 1877 opera, Samson and Delilah. It's an Annette Funicello beach movie morphing into a teen version of Lord of the Flies.

"testing, testing..." features a familiar sound in St. Louis, a tornado siren. I went out with my field recorder near the speakers in my neighborhood and recorded what I expected to be the test siren and announcement, but on that bright sunny day, they played the emergency recording that tells people to seek shelter because a tornado is in the area. I couldn't believe my luck.

"Goodbye Voyager 2" was named after the spacecraft, launched in 1977, that left the solar system in 2018 headed for deep space. I think about it, with the gold record on board that has greetings in many languages and Chuck Berry music and mathematical and telemetric data about how to find us (and perhaps eat us). I was about to begin third grade when it launched. And it'll just keep flying into the outer reaches of space until it hits something, as will I, or what’s left of me, someday.

My Time at WPKN 1981-1984

I'm originally from Trumbull, Connecticut. I was born in Bridgeport and lived in Trumbull until I was almost sixteen. One of my earliest memories is of going to Read's department store in Bridgeport in the early 70s and encountering the guy who was probably the very last elevator operator in America still employed. ("Down?" he said.) I ate grinders at Fortunas. I saw Star Wars at the Merritt Twin, I saw Shakespeare performed in Stratford long before the theater was abandoned and later burned, went to the very last Danbury State Fair and went on record shopping trips on the train to New York. I was definitely a local.

My mother, Marianne, was a violinist and at one point all three of my brothers were brass players. She played with the Norwalk Symphony. Members of my family were in various school ensembles and I was always going to concerts. My brother Chris Kase became a trumpeter and music educator and lives near Madrid. My brother Ray Kase was a trombonist and arranger in the jazz program at the University of Bridgeport, and I saw him perform with Randy Brecker, Clark Terry and Dave Brubeck. I took drum lessons there from John Simeone and later Todd Strait, both of whom were in the jazz program then. I wanted to be Philly Joe Jones when I was 14, but I wanted to do so many things musically.

I volunteered at WPKN beginning in January, 1981 at the age of 11 after John Lennon was assassinated on December 8, 1980. I did a lot of growing up that day. I was a fan of the Beatles and the classical and jazz I heard growing up. Not many of my peers even knew who they were or why Lennon's death was significant. I heard countless radio specials up and down the dial paying tribute and I got the idea into my head that I wanted to make my own. I was already a WPKN listener because I liked the fact that you never knew what you would hear next. I called and spoke with Harry Minot, then manager. He approved the idea and asked me to come to the station. The show I produced wasn't really any good, but it was my first hands-on experience operating the board, using reel-to-reel tape and trying my hand at being an announcer.

I was born with a rare eye condition called achromatopsia, but I was very high-functioning, walking a fine line between being a sighted person and a blind person--a dance move I still do to this day. I find ways to adapt and get the job done. The treatment I received from my classmates at school forty years ago would be called assault now and I was beginning to have problems with mental illness. But the people at WPKN treated me with respect and dignity and encouraged me to learn. The adults there took me seriously. Having a refuge was a crucial release valve for me in my early teens and it was a fantastic opportunity.

In the early 80s, the studios at the University of Bridgeport were cold no matter what the season. I remember rubbing my hands after walking into the AM studio on Saturday mornings and turning on the lights. Sometimes in winter you could see your breath. This was the studio where I received hands-on training in radio operation and production on Saturdays and Sundays and sometimes after school in the middle of the week. I had an air shift on the campus-only AM radio station because I wasn't yet fourteen, which was the minimum age for an FCC license. I played mostly oldies. On weekends, sometimes Harry would spring for cheeseburgers from Duchess. I dream about the old studios now and then.

I remember the New York Philharmonic broadcast came on reel-to-reel tape in a big plastic box with gaffers tape around it until it was time to broadcast on Saturday afternoons. I usually went to get it from the mail. Jo Willard used to come in to do her show about healthy living. I heard Glen Hauser's "World of Radio", a show about shortwave radio which I followed with a keen interest. Hugh Brower would become a good friend and mentor, introducing me to Douglas Adams' Hitchhiker's Guide to the Galaxy books and sharing the fun of listening to shortwave radio at the very end of the bandwidth's golden age.

I remember Colette Rossignol doing Capital Radio on Saturday nights which introduced me to punk and alternative music and it didn't take long before I started playing records by The Clash, The Buzzcocks and the Ramones. None of the music I encountered at WPKN was even on the radar of my friends at school. I was ahead of the curve again.

I observed Bob Gottlieb and Glenna Basset as they spent most of the weekday in the production studio putting together the nightly newscast. I noticed how serious and dedicated they were. It was about this time I started reading newspapers regularly and with greater and greater interest. I remember operating the classic Revox reel-to-reel machine I used for news production in a tiny, narrow studio as I pulled news reports from CBS and Mutual for the evening newscast. I can still hear the mechanical chugging of the Associated Press ticker and feel the warmth of the tiny room it shared with the transmitter.

Harry introduced me to the joys of Fats Waller and a great LP of Count Basie sides with Bennie Moten's band in 1929 and 1931 called Moten Swing on RCA. I remember being so excited when I found the album ten years later at Vintage Vinyl in St. Louis. He knew a lot about old movies and radio shows, which I also enjoyed. He also knew a lot of terrific old songs and had a playful sense of humor. He talked to me like an equal rather than like a child and I appreciated that. He taught me a lot and listened to endless questions. Other people in his position might not have bothered with a kid, and one with a disability at that, but Harry had good sense and imagination and he gave me a shot.

In the record library, which back then had 30,000 titles, there was a large poster on the back of the door that read in large, Gothic letters: "Thou Shalt Not Steal". There was a big jar with a sign that encouraged people to contribute their cigarette butts so it could be entered in an art competition. When I had some free time, I would find random albums and listen to them. That's how I first heard Art Blakey, Coleman Hawkins, Talking Heads, The Jam, The B-52s, Laurie Anderson, Frank Zappa, Ornette Coleman and countless other artists.

I didn't like everything I heard the first time, but I would discover later in life that some of the most rewarding musical experiences required repeated efforts to listen and understand. I wasn't crazy about asparagus when I first encountered it, but after trying it a few times, I came around and it was ultimately good for me.

So I had access to vast musical resource at a time when my pliable teen mind soaked up all the music I could get my hands on. I heard Latin, reggae, jazz, blues, folk, bluegrass, avant garde, electronic music, classical, music from India, early hip hip, punk, new wave, ska, alternative...you name it!  All that exposure to different kinds of music and the DJs who specialized in numerous and various musical styles made me a better producer, composer and musician. There are things you just can't learn in school. You have to be near it so it can soak through you. I learned a lot and I'm grateful for my time at WPKN.

In 1984, I started volunteering for WMNR in Monroe as a classical disc jockey, which I did for about a year before my father's job transferred him from New York to St. Louis and I had to move away. Back then, without social media to keep in touch with friends and family all over the world, moving that far away culturally and geographically was like moving to the moon: new friends, new house, new school, new life. "Here you go, kid." I realized after I left Connecticut that I didn't really want to be a disc jockey after all. I wanted to be a musician and producer, and grew more and more sure of it. After high school and some attempts at college, I started to become both, putting bands together and writing and recording music.

Fortunately, St. Louis is an amazing place that's crawling with great musicians and I've had the good fortune to work with many of them. After all, St. Louis is where Miles Davis, Clark Terry, Chuck Berry and Ike and Tina Turner cut their teeth as musicians. It's also within driving distance of key cities like Chicago and Memphis where I've played many times. And the state of Missouri gave us Charlie Parker, Pat Metheny, Charlie Haden and Chris Connor. I've travelled through the Ozarks in Missouri and Arkansas in search of waterfalls to photograph. I've heard and absorbed American roots music in a way that con only happen if you live here. The region, often dismissed as "flyover country", is rich in musical history.

Now I have a little studio in my house and I write, record and produce in a tiny bedroom in south St. Louis. I also do some session work for other people's albums as an instrumentalist and a vocalist, sometimes working with people in other parts of the world. If my eleven-year-old self only know that emerging technology would one day make a fully functioning studio at home a reality! I stopped performing in public six years ago. I dislike hanging out in bars and I like to sleep at night. The studio is my happy place.

I grew up thinking I'd never live west of the Hudson River but the journey west broadened my horizons in the truest sense of the word, continuing the musical education that started from WPKN. It was there that I learned to keep my ears and my mind open to all kinds of music, new and old, to listen beyond my own musical prejudices and to seek to experience and understand music on its own terms rather than mine. The rewards of cultivating such an outlook have been rich.

You can hear me guest host on WPKN in Bridgeport, CT online until 11/8/23 by clicking here

Thanks to Harry Minot and WPKN for giving me a guest shot so I could share my music with you. Please support WPKN today.

On the Origin of Corpus Alienum

John Blair Moore’s pencil draft of what would become the cover to Corpus Alienum’s Mind Control Dace Party (2019)

What does the term "corpus alienum" mean? It's Latin for "foreign body", a medical term for something that's inside your body that shouldn't be. You can use your imagination. It sounded cryptic and inscrutable. And its difficult to say, apparently because disc jockeys have trouble with it (the next album begins with the words "corpus alienum" pronounced clearly before the music starts as a public service). It was also a name not taken already by a band on iTunes, so I went with it.

Back in 2013, I was trying to finish my first solo album, some of which was released on my self-titled EP. I had taken on quite a task in playing most of the instruments myself and I was slowly getting better at engineering and mixing my recordings, but something happened; halfway through, the ideas for catchy songs weren't coming so quickly anymore and I felt a terrible feeling of self consciousness that made it impossible to be freely creative. I felt as though I were writing to a pre-conceived idea rather than making music naturally. So I stopped and started on a project that was entirely different. Under the name Corpus Alienum, I have made my most natural and honest music ever.

I had mostly written songs up to that point, but as a violinist's son I was well acquainted with classical music. These influences found very little outlet in songwriting. I had an interest in 20th century avant garde composers like John Cage, Edgard Varèse, music from the BBC Radiophonic Workshop, musique concrète and early pioneers of electronic music like Vladimir Ussachevsky and Wendy Carlos, Frank Zappa and even Joe Zawinul. I also have strong ties to jazz, music I love. I wanted to create music that drew from these influences.

So I conceived of Corpus Alienum as an outlet for whatever the hell I wanted to do. I began to put together a five movement piece called Dark Signal (2014) from some of my experiments with composition. I enjoyed the process immensely and was very pleased and encouraged by the result. I released it as an EP in 2014 (this year it became a full album with the addition of four unreleased tracks). And then, nothing happened. Nobody was interested and downloads were almost non-existent. I didn't really make an effort to promote it because that wasn't the point. The point was, I had taken a decisive step in another musical direction and enjoyed it a great deal, even if very few understood or liked what I was doing. I even took the cover photo. It is an album probably loved by myself alone, but it's a personal favorite of the albums I've made.

I took my time completing and releasing Mind Control Dance Party (2019), editing the soundtracks of vintage out-of-copyright educational and training films looking for samples to use in new compositions. This became the basis for the album, in which I would create little sound collages with beats.

Politics were (and are) truly awful and I felt a need to comment on them in my own way. I found much in the way of subject material that fit the mood of the present day.  The plea for a moderate, measured approach to consuming news media in the film "Let's Get the Facts" found its way into two tracks. Media literacy is crucial to a functioning democracy, and it's increasing scarcity is something I'm concerned about. I also included bits from nuclear scare movies, films about alcoholism and home economics films on some of the other tracks. The paranoia of the era mirrors our own in some respects. The album is a bit patchy, but I like the ramshackle, noisy and thrown together nature of it. I learned much from making this album. Cartoonist John Blair Moore did the artwork, but didn't live to see the album's release.

I was listening to a lot of Ornette Coleman when I was making Mind Control Dance Party, and the thing I love about his work from 1959-62 is that no matter how frenzied and abstract the improvisation was, everything was bookended by these great little tunes he wrote, sometimes only eight bars in length. However crazy things got in the improv sections, it was always wrapped by a fun and sometimes catchy tune that tied it all together. I also stayed away from labyrinthine chord changes because not everyone can follow the music. Although I personally enjoy hearing that kind of thing done well, I think one can make music with interesting harmony over static, repeated bass lines and few modulations. Indian classical music is like that, and its some of the most interesting and beautiful music in the world. That aesthetic is, more or less, still the approach I take to Corpus Alienum releases.

Mantovani Boogie Man came in early 2021 as the world started to awake from covid. I had worked on it off and on for about eighteen months when I put the tracks away for a year. I wasn't sure if I really had anything or not, but when I dusted them off in late 2020, I thought the tracks I had were good so I finished the album and put it out. It got a bit of critical notice and radio airplay in St. Louis and people seemed to like the funky grooves. As I wrote on the CD sleeve, I was inspired by the music of the 70s, the music of my youth, to write "instrumental 'B' sides of fictitious hit singles". It was the most accessible Corpus Alienum album up to that point, full of thick grooves and hooks, all meant for booty-shaking. I didn't consciously make it more accessible, I just went with my feeling and created the music I wanted to create and it has coalesced into a style.

I created all of Corpus Alienum's albums in my tiny home studio in St. Louis, MO using a Mac running Logic Pro. Most of the tunes, especially those on Mind Control Dance Party and Mantovani Boogie Man, were inspired by themes that grew from my improvisations, usually drums, bass and electric piano. I use loops and drum programming, but I do play real drums sometimes. I also play guitar on several pieces. I've made albums in both analog and digital, and while the sound of the former can be very pleasing, working in analog is a much slower process. Digital gives me more flexibility, dynamic range and frequency range suited to the music I make. I like the technology of the age.

I created Corpus Alienum as a clearinghouse for musical ideas that defied category. There's a lot of jazz and R&B and avant-garde music in me, and it came out naturally, even on the first album. Corpus Alienum has become a crucial creative outlet. What was once a side-project has now become my main thing, it seems. Watch for the new album testing, testing… in November.

The Stories Behind the Songs on the New EP

I recorded the songs on the EP between 2009 and 2012. The most recent overdub was my vocal on “Philosophy Machine”, which was recorded in March, 2023. My intention was to make a full album in which I played most of the instruments myself. But a funny thing happened; I stopped working about halfway through. After years of writing those kinds of songs, I suddenly dried up creatively and the process was no longer fulfilling. That’s when I started the Corpus Alienum project, which was created to be a vehicle for my instrumental compositions. In that context, I was creatively fertile and worked with ease. Writing and recording instrumental music is fun compared to songwriting and singing, which is hard work. I needed a break, but enough time has passed and now I’m bringing these songs out.

“Entitled" is a song about how hard it is to make a living with a disability and defying and exceeding people's expectations of what I can do. It's about overcoming a fear of judgement and living your life with no apologies to anyone. As a legally blind person, I've faced discrimination and prejudice. I have been spat upon and assaulted over it. It's about that. John Holt provided the organ throughout and the Mellotron part in the bridge.

"Cambrian Explosion" also features John Holt on organ and his very essential string arrangement. It's about the rush of the creative process where inspiration hits and when ideas come together. It's also about the feeling I get when making music in my studio, thinking up ideas, laying down tracks, editing and mixing. The "Blumlein Pair" (written "pear" in the lyric) and the "Decca Tree" are microphone arrays for recording in stereo. Yes, it does reference the Beach Boys' "Cabinessence". I was doing lots of meditation then, so you get "Pass from the rêve to the real/And when all's said, done and revealed/You can feel you're getting stronger from inside".

I wrote "Philosophy Machine" in 1992 when I was 23 and performed it in the Groupers originally and also with the KKG. The songs on the EP are sort of notes to myself, in this case about isolation and loneliness and my perceived inscrutability to most people I encounter. Thus began my tendency to write mostly upbeat, snappy tunes with more serious lyrics for those who care to look beneath the surface. Mike Schrand provides some lap steel. That's the 53-year-old me singing a song written by the 23-year-old me. As I look back on this tune, I think the younger me showed promise.

"Quality Control" is about...well, I'm not quite sure what it's about, but it certainly sounds like I mean it. I wrote it in 2008, and I vaguely remember reacting to the nastiness and acrimony surrounding the election of 2008 (Banter and blame/And they're chanting your name/In a litany of bad news...sounds like Sarah Palin, and foreshadows Tr*mp). But it's also personal, like when you see someone you know and love make the same mistakes over and over again without learning. It's as if I'm saying,"if you're wondering why your life sucks, you're probably not seeing something about yourself that's rather obvious to everyone else." This can also be applied to myself. Whether personal or political, the themes hold. I played every instrument and sang every vocal part on this one.

And finally, "The Big Whatever" is a sort of agnostic hymn, admitting of unknown forces but unwilling to define those forces in personal terms. I wrote it in 2011 after a very turbulent time in my life and writing songs again was hard. I was doing lots of mediation, probing the inner depths. It's basically a pep talk for myself. This was a fun one to record, especially doing the backup vocals with the Sun Sawed in 1/2's Doug Bobbenhouse in Chicago and recording the Sun's Dave Farver on tenor sax in my tiny little studio. I intentionally tried to write a song that didn't conform to my usual style.

So…will I do a follow-up to the EP in that style? Ask me next year.