Kicking Pain

I should probably stop worrying so much about blogging perfection. That’s not the point of this exercise, after all. And I need to keep the words flowing as they are helping me make sense — or at least work through — what has been happening to me.

We write what we know. This I know.


Orofacial clefts are fairly common in the US, affecting approximately 7500 babies each year. 

According to the Cleft Palate Foundation, one out of every 1,509 babies are born with isolated cleft palates, while one out of every 902 babies are born with cleft lip, with or without cleft palate.

The trouble with my particular cleft — palate only — was that the doctors didn’t find it until I was close to four years of age. Somehow no one seemed to notice that my speech was fraught with nasality and I could not shape consonants. It wasn’t until I had my tonsils out that the cleft palate was discovered, triggering a series of events that led me to the Lancaster Cleft Palate Clinic in Pennsylvania, and Dr. Mohammed Mazaheri.

My Mother was charged with driving me to Lancaster from Canton, Ohio, at least once a year, but usually twice. To their credit, my parents sought out and found what was then the premier center for orofacial clefts in the country. I spent a good deal of time being fitted for an appliance, which looked like a retainer but with a ovular ball attached to the back end. That ball pushed up my useless bi-fed uvula and blocked air from exiting my nose. This helped me speak more clearly, but it also required killing my gag reflex. Fitting me for the appliance was not fun. My small mouth felt like it was being overwhelmed by this new contraption. It hurt. I could eat only soft foods for several days, and my Mom would treat me to Zimmerman’s Family Restaurant on Queen Street, where I’d eat lemon meringue pie for lunch.

As the years went by, I began to understand how this birth defect (I use the term loosely– “defect” is relative) created a cascade effect in my head that involved my Eustachian tube, ears (particularly my right ear), sense of balance and sinus problems. My childhood was spent dealing with recurrent ear infections, which led to an ENT putting tubes in my ears and to my taking doses and doses of grape-flavored Dimetapp, a decongestant. To this day I still abhor anything grape flavored.

One day when I was about 11, I was sitting on the couch in the family room when I felt something weird in my right ear. Soon enough the “tube” that had tried to drain my drum rolled out. It was a small green cylinder, cinched at the waist. I marveled at it, caked with wax and puss. So lovely. So not working.

By the time I was 14, I struggled with near-constant ear pain, congestion and overall lethargy. My body had been fighting a low grade infection for who knows how long, and I couldn’t seem to get my ear doctor to treat the underlying cause. He kept saying I needed surgery, but would put it off, make some excuse, while I just kept feeling like shit. My Mother, who took me to all of my doctor appointments, didn’t believe me when I cried out in pain during an exam. The ENT said “I’m barely touching you, that can’t be painful,” to which I replied, through tears and disbelief, “It is.” My Mom stood near the door to the exam room, her arms crossed, a look of annoyance on her face. “Let’s not play games,” she said.

I had to take matters into my own hands. And so the next week, while at school, I made myself fall within sight of the study hall doors. I told the principal I was dizzy and my head hurt. Soon thereafter my Mom took me to see another specialist, this time in Akron. He said I definitely needed surgery, but to perhaps take me to the department of otolaryngology at The Cleveland Clinic.

My doctor at the Cleveland Clinic had just come to the United States from Israel; he was a “teaching doc,” so he often had med students join him on his rounds. When I arrived in his office, he took one look at my ear and asked my mother how I was even standing up. I was admitted to the hospital that day, where I remained for three weeks.

On October 31, 1995, I underwent a radical mastoidectomy. All of my bones of hearing and ear drum on my right side were taken out. The cholesteotoma that had been growing in that ear for far too long (imagine a tumor with webs of disease taking over my entire ear) was cleared out, and I actually had better hearing post-op, through the mastoid bone, then I did before the surgery.

I went home to recover, but my time away from the Clinic was short, as I began to experience facial paralysis, and soon the entire right side of my face stopped working. I had to tape my eye shut to sleep. I smiled a very crooked smile. I did not shed tears from that right eye.

A course of steroids decreased the inflammation of my facial nerve and slowly I gained back control of my facial muscles. But this was just the beginning of a long, drawn out series of medical problems I would experience in my life. And though I believe that dealing with so many body/mind issues led me to develop a deep wellspring of empathy, I can also say that health issues have beaten my ass down and created truck loads of hopelessness and despondency over the years.

Since that first ear surgery, I’ve had countless sinus infections, some lasting months at a time, two sinus surgeries (one was a septoplasty for an extreme deviation and and it was absolute hell), and a hysterectomy. Turned out that the fibroids I had in my uterus were huge, and one in particular was worrying my gynecologist. It didn’t look right to her, and she wanted it out, fast. Her hunch was right: Once biopsied, the fibroid was found to have cells consistent with uterine sarcoma. My doctor told me that she’d seen this particular presentation in two patients in 25 years, and lucky me, I was one.

I don’t like to separate the mind from the body–as far as I’m concerned, they are one entity, and illness is illness. I use the term “mental illness” as a catch all, but it’s woefully inadequate. It’s one of the things that perpetuates this notion of a diseased mind that is unpredictable, dangerous, “crazy.”

The fact is that I began exhibiting symptoms of mental distress (better term) when I was about 15. My mother was fighting breast cancer, and would soon undergo a double mastectomy with reconstruction (saline implants). My grandmother, with whom I was exceedingly close, was dying. I had older siblings who wanted zero to do with me, and a father who was checked out emotionally.

Was I “pushed” into bipolar process as a result of these things? I’ll never know. But I do know I was coming home from school and sleeping well into the evening, rising only to eat dinner because I had to show up at the table or else. I lied, a lot. I spun stories to try and make sense of the inferno that was in my brain. I had a massive crush on my French teacher, who happened to be a woman. I told her I was having an affair with a much older man who lived in California. That sure got her attention! At the bottom of it all was an ugly, terrifying secret locked up tight: Starting in 4th grade, desperately seeking male approval, I’d unwittingly become a sex toy for several horny neighborhood boys. My first first blowjob was at 10. I have no idea how I even knew what to do, but I was a quick study. And then, at 13, I was sexually molested by a 23 year old man. Yes, I wanted it. I wanted to be loved. I wanted to be seen. This is irrelevant, of course. That man had the power, and I was just a kid. Pedophiles know exactly what they are doing. I understand that now.

At 18, when I finally told two members of my family about the abuse, I was not believed. “You can’t be 13 and call it abuse,” I was told. And so I stopped believing myself. I also stopped telling people about what happened to me. For more than twenty years, I told myself the abuse was my fault.

It wasn’t until I moved to Colorado that I finally dealt with my mental distress, as well as the reality that I had been violated by a man whom I trusted. I had to deal with it: I’d landed an awesome job and needed to be clear-headed, healthy, present. Thanks to a very smart, intuitive psychiatric nurse practitioner, I was able to get on the right medication and soon began to feel more even, less strung out emotionally, more in control. There was less self-sabotage, more exercise, fewer mood swings and crying jags. Better concentration. I slept soundly for the first time in my life.

Still, I kept dealing with persistent back problems that sometimes got so bad that I couldn’t stand up. This went on for years, and I tried every modality imaginable–it wasn’t until I found a certified Rolfing practitioner that I was able to get some relief. Eventually, even that didn’t do the trick. For almost a decade, I learned to live with constant, nagging pain. NSAIDs helped, to a degree, as did consistent movement, like walking or riding my bike. I learned to keep the worst pain at bay, but I also convinced myself that this was my lot in life: chronic pain. Deep down, I held tight to a tether of self-blame and deep shame, and pain was my penance.

Undoubtedly this was one of the major contributors to my succumbing to a major depressive episode in 2015. Four solid months of the worst psychic pain imaginable. I truly wanted to die. For someone who was regularly obsessed with her weight, losing more than 30 pounds was just something that happened to me, and I didn’t care either way. A tweak of my meds brought me back to my life, but I will never, ever forget what it felt like be so outside of myself, weighed down by a suit of darkness that I could not shed. Depression is visceral and relentless. It’s heavier than anything I’ve ever carried, and I don’t think I’ll ever be free from worrying about its return.

The daily pain persisted. Even moving in bed, turning over, hurt like a bitch. My back would spasm to the point where I was immobilized and afraid to lift a finger. If I turned my neck the wrong way, shooting pain moved down into my shoulder. On those days and nights when my sciatic nerve went haywire and I wanted to stick a hot poker in the crease between my leg and my butt, I took Neurontin. It was the only thing that worked outside of narcotics, and those I would not touch.

Something had to change. And just last week, it did, though it came in the form of a life-changing diagnosis.

After numerous tests and many years of “suspecting” I may have an underlying condition that was creating seemingly-unconnected health problems–recurring iritis, urinary issues, GI discomfort, intense joint pain, bone spurs, arthritis–I was formally diagnosed with an auto-immune disease, ankylosing spondilitis (AS).

AS is a condition of the spine, a rare type of arthritis that causes pain and stiffness. It’s also known as Bechterew disease, and usually starts in your lower back, but can spread up to your neck or damage joints in other parts of your body. It’s an inflammatory process that can do serious damage to your heart or other organs if left untreated. My C-reactive protein, which helps measure inflammation in the body, is at a 19 right now; normal levels range from 0-3. My body has been fighting this illness for quite some time, but diagnosing AS can be very tricky. My case is pretty textbook, though. That’s the good and bad of it.

And so. I have to start taking immunosuppressive drugs to try and get my body’s immune system to calm the hell down. Right now it’s attacking deteriorated discs in my spine and growing bone around them. Stopping that may help reduce the amount of stiffness I will experience, and I may be able to avoid being wheelchair-bound by the time I’m 60. I’ll have to administer self-injections every two weeks, and my insurance company has told me how fortunate I am that I will only pay $127 a month for this “specialty medication” because their out-of-pocket expense is $5200. Good god.

Am I tired of being sick and tired? Absolutely. This diagnosis hit me hard, and I’m still reeling from it. But maybe, just maybe, I can get to a point where pain stops catching a ride in my sidecar, despite my repeated attempts to kick it out. Maybe I can tackle hiking those 13ers this summer after all. Maybe I don’t deserve to be punished ad nauseam for things I couldn’t control, things I did to survive the hand I was dealt, or the mistakes I made to try and find love and acceptance.

Maybe the path to relief is cleared for travel.

Done By a Woman

Many of you may not know that I have a deep love of art (and architectural) history. My passion for art grew exponentially when I took a course from the late Thalia Gouma-Peterson, professor of art history at The College of Wooster, in 1991.

The class was Women Artists 1940-Present, and wouldn’t you know that Thalia had pieces from her personal collection that she brought in to class and passed around: I recall caressing the curve of a sculpture from Elizabeth Catlett, marveling at the kinetic energy of a small Louise Bourgeois sculpture, tracing the lines of a Miriam Shapiro painting, and falling deeply in love with everything Louise Nevelson created. Those classes flew by in what felt like an instant — Thalia had a remarkable way of teaching that drew you in, captivating your imagination and not letting go until you walked back out into the weak Ohio sunlight, blinking, certain you’d just been on another planet entirely.

During a meeting with Thalia wherein we discussed the possibility of my helping her (as a teaching assistant), she called me a feminist. “Um, I’m not a feminist,” I replied rather meekly. Thalia squared her strong shoulders, sat up straighter and looked me in the eye. Burned through.

“Of course you are a feminist,” she said, her Greek accent thick with certainty. She laughed. “Deny it all you want, my dear. But you are a feminist.”

She changed my life that day.

“Women Artists 1940-Present” also introduced me to the work of artist Lee Krasner, whose name was often synonymous with her husband, Jackson Pollack. A remarkable artist in her own right, Krasner’s work was frequently overshadowed by Pollack’s fame, but her contributions to modern art cannot be underestimated. Exploring the outer reaches of abstract expressionism, Krasner’s work had energy to spare, and I often found myself getting lost in her paintings. Unfortunately, her intense self-criticism and a near-obsessive tendency to revise and revise her work led her to burn or destroy many paintings and collages. Lucky for us she didn’t reduce them all to ashes.

This one, ‘Shattered Light’ (1954), is a favorite.

Which leads me to today’s #backpocketpost, a poem, “Regards for the inner light (L.K.).”

(In the 40s-50s, Krasner often left work unsigned, or used the genderless initials “L.K.” Typically in the 1940s and 1950s, Krasner also would not sign works at all, sign with the genderless initials “L.K.”. She also incorporated her signature into the painting itself, blending it until almost unrecognizable, as she did not want to draw attention to the fact that she was a woman or the wife of a famous painter.)

Lately I’ve been thinking of what Hans Hoffman, one of Krasner’s early teachers, said to her in 1937: “This is so good, you would not know it was done by a woman.”
(2020 reframe: This is so good, you know it was done by a woman.)
The poem that follows grew out of that comment.

Regards for the inner voice (L.K.)

Linseed-scented skin, bitten nails
fine wrists, hollows in places
few could reach,
she was not the climbing
or falling through
Brooklyn-born, Bessarabia-bred

she was the rising early
the first spark
the being pulled into
her forms not a likeness
but a flight in

And when she opened her doors
no language save collage
rushed out
cubist musings
on economies of ego

scissors at the ready
and half-day silences
thick with smoke after smoke
bread, then bourbon, the pigments
spread, the pendulum swings
work so good you would not know
it was done by a woman.

Contemplating
deliberate destruction
of what sits before her,
she pulls on a black coat
walks the creek bank

din of crickets and
inner critics rising and falling
like a dirge. Surrounding her,
pushing at her, 50s America
perfect and pure
so many pretty pictures
each one lacking a pulse.
Scenes but not events
like history without ruins
or vast museums built
to house the dull.

She returns to the studio
stokes the woodstove
and rips the canvas
from its frame. There is
no time like the past.
Let it burn.

Featured artist: The Still Tide

“Keep It,” from the 2020 EP “Between Skies” (click on photo to listen)

Introducing #backpocketposts

As I work on long-format pieces for this blog, I keep thinking about other topics I’d like to explore in shorter posts, a #wordburst if you will. My solution to this is #backpocketposts, designed to fill in those gaps in time when I’m busy researching and putting together a more in-depth analysis of whatever my brain is chewing on at the time. At the conclusion of each post I’ll feature a song from an artist I admire. Words and music! I call that necessary sustenance.

Back Pocket Post No. 1
Hard to Love
December 7, 2020

I saw a meme recently with this quote: “I’m sorry if anyone made you feel like it’s hard to love you.”

It made me pause. I have felt that — unloveable. Prickly. My emotions were often right below the surface, waiting to blow at the nearest person or thing that lit my fuse. Did I know then what I know now? That I learned to default to anger for pretty much every emotion I felt? Fear blew up into anger. Anxiety erupted into rage. Perceived lack of control invited the slamming of doors and punching counters.

Diagnosed Bipolar II twenty plus years ago, I started taking psychiatric meds when I was just about 30. (Since then I have come to understand that I have an anxiety disorder and PTSD; my illness is closer to cyclothymia than Bipolar II. But I’m also quite wary of the DSM (Diagnostic and Statistical Manual of Mental Disorders [DSM–5]). “Diagnoses” can be terribly misleading, and sometimes cause untold amounts of suffering, confusion and very real damage.)

Looking back, I can’t believe it took me so long to live un/strung out from chaos, from self-inflicted emotional ascents of the Pain Pitch. My family, particularly my father, was anti-psychiatric everything (God would provide — God didn’t create people with “mental illness,” etc.) and I had serious hangups about taking meds. No one seemed to know what the longterm effects of these SSRIs were, really, and I wasn’t interested in being a guinea pig. Then again, I was very interested in relief. Leaving behind great pitches of emotion that carried me through days with tears in my eyes the whole time, crying jags that made me hide in my office — leaving behind self sabotoge just so I could feel something — leaving behind explosions that were completely disproportionate to the matter at hand.

The relief I felt from leveling out for the first time in my life was incredible. I had energy and motivation; I managed to keep up with an exercise regimen and weight loss program (Weight Watchers at the time), and lost 35 lbs. Slowly, with the help of a therapist, I began to understand better what had been “wrong” with me all these years. It would take more than a decade plus more before I could even begin to unravel the giant spool of how my family and my upbringing fed my mental illness. Without knowing it, I had become the “identified patient,” carrying the emotional baggage of family members who categorically refused to recognize their own issues and how they contributed to an atmosphere of denial and compartmentalization. Want to box up your emotions and put them on a shelf, over and over again? I have the consummate guide for that.

The point here is this: No one should feel hard to love. No person should hold back to a spectrum of emotions just to appease the “adults” in his/her/their life. Behind every hard emotion is an even harder story, one that has developed such a protective shell that it appears impenetrable.

Receptivity helps. Listening can make all the difference in the world. Once we realize that the barbs being thrown our way by the people we love aren’t meant to pierce — they are mere defense mechanisms designed to protect and insulate one from perceived harm — then hopefully we can create a loving boundary with our loved one. Because beneath that rage is pain. On the other side of those words that feel so ugly is a person struggling to express thus far-unnameable emotions.

No one is too hard to love. But despite our good intentions, humans can definitely make it difficult for a person to feel seen, and heard. Perhaps one way to stay out of the dark canyons of conflict and misunderstanding is to listen more and get out of your own way. If a loved one is raging, don’t keep listening for some slight or insult that you need to defend. Listen to listen. Remove yourself from the equation. This isn’t about you, even if it seems that way on the surface. Realizing that and applying it is more than half the battle: It’s the key to healthy growth in relationships with every single person we know.

Brianna Straut, “Salt in My Wounds” https://www.briannastraut.com

Everything is Always Over

Over time I will dial in this blog more – fonts, templates, photos, etc. But for now, I need to get some things out of me. First: this blog’s namesake.

My maternal grandmother lived until she was 105. My mother was her oldest child; Grams had a son with her second husband, who was 21 years younger than my mother. My great grandfather had a saying that my grandmother repeated often, and always in this deep voice, as if her father was speaking through her: Everything is always over.

Grams employed this phrase when she was instructing a person to just let it go. The past is past, and there’s nothing you can do about it now. Best to look ahead, toward tomorrow, and trust that you learned something valuable from the days streaming like contrails behind you.

I heard Grams imitate her father’s basso profundo voice so many times over the years, but I never truly understood what that phrase really meant. It wasn’t until my mid-40s that it started sinking in, and if a long life is a sign of a good life, then this adage works wonders. Grams was also fond of saying that attitude is everything. This too I have taken to heart, and it’s become one of my north stars. When waves of crankiness threaten to drown me, I push to the surface and remind myself that being alive and safe and loved are not things to be taken for granted. Ever. I try to be kind. I insist on honesty.

There’s another twist to the name of this blog, and it has to do with feeling like things really are over. There is no light visible anywhere, just haloes of hazy fog that you can’t wipe from your vision. Days are endless, jarring in their brightness, and most are spent in bed, willing yourself to sleep, sleeping so much that your body begs you to move. You’re sore from not moving. Your stomach is constricting from very little food and you feel lightheaded when you have to get up to go to the bathroom. You spin out an idea that involves a catheter for depressed people that’s just a tube leading from a bedside commode to the actual toilet. You wonder why there isn’t just a simple all-nicotine pill, even though you quit smoking years ago. Your partner leaves for work every morning, and on those days when you can’t rise from the place you feel most safe, she frets all day, tries to distract herself from the thought that you could do it today, you could choose to take your own life while she’s lecturing on Emmanuel Kant.

****

I have long been a fan and follower of the craft beer phenom in the U.S., discovering it with gusto in Missoula, Montana around 1995. After leaving (willingly) a 19-year career in law school communications, I ended up as director of communications at my (then) favorite brewery in Denver. It was a job I’d dreamed about for a long time, and I jumped in with all appendages.

My time at the brewery was wild: intense, fun, challenging, exasperating, enlightening. People outside of the beer industry love to romanticize it, and I understand why. Being “on the inside” of the Denver scene was a hell of a good time, and the camaraderie is authentic. The familial feeling is real (in most instances). But my experience also exposed the hard and exhausting and super competitive underbelly of an industry that has grown into an untamed, ego-driven beast in the past decade (not all beer haha). By the time I quit, in June of 2020 in the midst of the pandemic, I was beaten down by the persistent, unending task that is managing social media, and sick of dealing with narcissistic, selfish personalities. I will never forget those two years and one month, though. I came out of that job with more confidence in my skills than I’d had in a long time, and I came out with friends I keep up with, invest in, some of whom are now like family.

****

Providing this backstory on my life in beer is necessary in order to understand this: It was excruciatingly difficult to hear that a brewer at Trve Brewing here in Denver died by suicide earlier this week. I did not know him well. We’d met, and I’d hung with him in groups at beer events.

When you hear that a person in your industry made the decision to leave this earth, it shakes you, no matter if it was a stranger or a friend. Hell, I consider every brewery employee to be a friend. Every maltster, hop grower, brewer, bartender, cellarman — they are my people.

Suicidal ideation is a mind fuck, but you don’t need me to tell you that. It’s the closest thing to having voices in your head telling you to do something really really bad. Actually, it IS voices in your head telling you to do something bad. And that bad thing is to leave, make the exit, say sayonara and don’t expect a call back. I don’t mean to make a light of it, but those voices and I, we have an agreement. If I hear them, I tell someone.

It wasn’t always like that. The first time I wanted to take my own life I was 15. I carried around a bottle of pills that I’d collected from my own medical procedures (good old Demerol), as well as my parent’s various drugs. I wasn’t sure when I would take them. I ended up taking half of them after a fight with my parents. I never told anyone. I puked about two hours later, then slept through my alarm the next morning. 5:30am comes fast when you’re a teenager.

Did I want to die? Not really. I wanted to change something, anything — I wanted someone to tell me why I felt such pain. I wanted make my father pay for hating me, or so I thought. I wanted so many things that I could not have. Mostly I wanted to run.

This is not about me. Not now. It’s about a man who chose to end his life who was also working for one of the most successful and popular breweries in Denver. He was a hugger. (I am a hugger.) His smile could light a stadium. He had talent and passion and compassion and heart. And now he is gone. He had a choice, as we all do, and he took it. I will not judge him for that. Compassion is all I have. Empathy. Disbelief.

I have spoken with a few people already about organizing a fund that will help beer industry employees access therapy/counseling resources. Help for individuals is what is needed, imo; each person has his/her/their own struggles, and the trick will be finding therapists who can take on a few clients right now. We’re Code Red here. Suicide is another contagion with which we must deal.

This is just the beginning of the conversation, but the fire has been lit beneath me. I have the will, and the time, for this. Lives are at stake. Wish me luck. And welcome to Everything is Always Over.


Introduce Yourself (Example Post)

This is an example post, originally published as part of Blogging University. Enroll in one of our ten programs, and start your blog right.

You’re going to publish a post today. Don’t worry about how your blog looks. Don’t worry if you haven’t given it a name yet, or you’re feeling overwhelmed. Just click the “New Post” button, and tell us why you’re here.

Why do this?

  • Because it gives new readers context. What are you about? Why should they read your blog?
  • Because it will help you focus you own ideas about your blog and what you’d like to do with it.

The post can be short or long, a personal intro to your life or a bloggy mission statement, a manifesto for the future or a simple outline of your the types of things you hope to publish.

To help you get started, here are a few questions:

  • Why are you blogging publicly, rather than keeping a personal journal?
  • What topics do you think you’ll write about?
  • Who would you love to connect with via your blog?
  • If you blog successfully throughout the next year, what would you hope to have accomplished?

You’re not locked into any of this; one of the wonderful things about blogs is how they constantly evolve as we learn, grow, and interact with one another — but it’s good to know where and why you started, and articulating your goals may just give you a few other post ideas.

Can’t think how to get started? Just write the first thing that pops into your head. Anne Lamott, author of a book on writing we love, says that you need to give yourself permission to write a “crappy first draft”. Anne makes a great point — just start writing, and worry about editing it later.

When you’re ready to publish, give your post three to five tags that describe your blog’s focus — writing, photography, fiction, parenting, food, cars, movies, sports, whatever. These tags will help others who care about your topics find you in the Reader. Make sure one of the tags is “zerotohero,” so other new bloggers can find you, too.