Recovered Words

Last night, in the process of looking for the original wording of a poem I wrote more than fifteen years ago, I discovered a collection of unpublished work stored on an external hard drive. The poems, short stories, essays and short film scripts had been written on two old laptops—a Dell and a Gateway—and they remained unpublished for the simple reason they were unworthy of print. But as I fell into the Word doc rabbit hole, I came across a few items with potential.

One was a poor, unfinished essay with the opening sentence, “Sometimes I wish I could ‘green screen’ my life.” I played with the line spacing and edited the essay into a poem. It’s certainly not the poetry of Whitman, Dickinson, Mary Oliver or Billy Collins, but I am pleased to have revised the words into a finished piece—which is now saved on my current computer for future use.

Green room, green screen by Jared Tarbell via Wikimedia Commons.

Green Screen Poem

Sometimes I wish I could
“green screen” my life—
alter the circumstances,
change the background,
transport myself from
my furnished studio apartment
to a Northern California bungalow.
Employ artifice to shape existence.

But life is a reality show—
just without the scripted confrontations.
And there is no green screen
to fix the disparity between
what I am and what I hope to be.
We achieve our dreams,
continue striving toward them
or give up altogether.
Life provides no special effects
to bend reality to our liking.

©2020 Francis DiClemente

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Inspired by Vincent

I am continuing to work my way through the book The Letters of Vincent Van Gogh. I am reading it from beginning to end, but I haven’t been consistent with reading it on a daily basis.

The Letters of Vincent Van Gogh, Penguin Classics.

Yesterday I came across a passage worth sharing. To set it up: the time is July 1885, a few months after Vincent painted his master work depicting peasant life—The Potato Eaters (April 1885).

The Potato Eaters by Vincent van Gogh (1885).

However, Vincent is still having trouble selling his work and his financial situation appears bleak. He writes to his brother Theo:

“I find myself faced with the necessity of being that most disagreeable of people, in other words of having to ask for money. And since I don’t think that sales will pick up in the next few days, the situation seems rather dire. But I put it to you, isn’t it better for both of us, après tout (after all), to work hard, no matter what problems that may entail, than to sit around philosophizing at a time like this?

I can’t foretell the future, Theo—but I do know the eternal law that all things change. Think back 10 years, and things were different, the circumstances, the mood of the people, in short everything. And 10 years hence much is bound to have changed again. But what one does remains—and one does not easily regret having done it. The more active one is, the better, and I would sooner have a failure than sit idle and do nothing.”

Gogh, Vincent van, and Ronald. Leeuw. The Letters of Vincent Van Gogh. London: Allen Lane, Penguin Press, 1996. Print.

What inspires me about this passage is Vincent’s willingness to press on with his art, undeterred by his lack of success. The fire in him to create burns too intensely for him to abandon his avocation.

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Four Years Old

Our son, Colin Joseph, celebrates his fourth birthday today. And being a late bloomer in all aspects of life, I never expected to carry the title of husband and father. Yet here I am, nearly 51, a family man who has shed his bachelor status. And being the father of an autistic child has taught me the importance of striving and attempting—because that’s all you can do is try—to practice patience, humility, gratitude and acceptance. Acceptance is the key.

Colin Joseph sleeping.

I know this evening when we celebrate Colin’s birthday, he will likely not blow out the candles or eat a slice of his birthday cake. He may not pick up or play with his new Woody and Buzz Lightyear toys. He may preoccupy himself with the string of the balloon my wife bought him. And that could go on for hours.

We work hard to help Colin improve his communication and social interaction skills. But progress is slow, and we don’t know if he will get better with time. So I have to remind myself to love the child we have, exactly as he is right now, knowing he may never become a “normal” boy. It’s a crude reference, but the situation calls to mind the Stephen Stills’ song, “Love The One You’re With.”

“Well there’s a rose in a fisted glove
And the eagle flies with the dove
And if you can’t be with the one you love, honey
Love the one you’re with …”

For now, I am grateful for the blessing of the little angel/mischievous rascal who turns four years old today.

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Single Vision

One is the loveliest number. It’s only a temporary fix, but thanks to the stellar diagnostic work of Dr. Leonard Savedoff, my double vision is now gone. Dr. Savedoff has written a new prescription for prism lenses. It will take a few weeks for the lenses to come in, but in the meantime, he applied a cling veneer with a grid pattern to the right lens of my progressive glasses and POOF—my double vision became single.

While walking back to the office, I tested my eyes and the results were conclusive. Looking at a streetlight, I saw ONE instead of TWO. Looking at a sign—ONE. Looking up at an American flag flying atop a downtown building—ONE.

But as I strode along the sidewalk, I thought about the bookworm played by Burgess Meredith in the Twilight Zone episode “Time Enough at Last.” He’s a bank teller who loves to read but never has the time. Then a nuclear explosion hits Earth, and it appears he is the only survivor. The teller finds the library and realizes he can now read all the books he wants and no one will bother him.

Photo of Burgess Meredith from The Twilight Zone episode “Time Enough at Last”

But a tragedy befalls him when he drops his glasses and the lenses shatter—leaving him incapable of reading. So I must exercise caution, especially when walking on the icy sidewalk, to avoid the same fate, since my double vision returns the second I lift the modified glasses off my nose.

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Alphabet Expression: Verbal Juxtapositions

I have completed a new project—a mixed genre book that is a medley of poetry, vocabulary and conceptual art.

I possess an obsession for vocabulary, and I spend time each morning looking up the “Word of the Day” on the following sites: thefreedictionary.com, merriam-webster.com and dictionary.com.

I created Alphabet Expression: Verbal Juxtapositions as word play—an attempt to use unusual word combinations to create new associations and imagery in the mind of the reader/viewer. The word pairings were formed according to alliteration, appearance, randomness, rhyme, sound and similar or opposite meaning.

I hope to publish the work in book form (most likely in a self-published format), and I am also interested in collaborating with a designer or visual artist to develop a selection of large-scale, text-based artwork, using some of the pairings from the book.

Here are some sample combinations. You could call the hybrids “voetry” or “poecabulary.”

Autistic

Artistic

Collision

Collusion

Diffident

Different

Lonely

Lovely

Perfection

Perception

 

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Frankenstein for a Day

I am now recuperating from Gamma Knife radiosurgery, which was performed on Tuesday, Jan. 28 at Upstate University Hospital in Syracuse.

I experienced a complication and a greater degree of pain compared to the Gamma Knife procedure I had in 2012 (the goal then being to prevent my pituitary tumor from growing back).

When neurosurgeon Dr. W. and radiation oncologist Dr. M. inserted the four aluminum pins in my head—used to fasten the titanium head frame—they had difficulty at one of the sites, near where I had a portion of bone removed during my initial brain surgery in 1984.

Gamma Knife head frame. Photo by Pamela DiClemente.

The pin placement caused cerebral spinal fluid to leak, and I heard the sound of liquid dripping against the metallic structure, followed by rose-colored fluid splashing on my hands and on the blanket covering me. Nurse B. applied gauze to stanch the flow, but as the droplets fell from my right temple area, I conjured the image of Christ wearing the crown of thorns.

Christ Crowned with Thorns, 1550, by Maarten van Heemskerck (Frans Hals Museum).

After a mapping MRI was performed, Dr. W. and Dr. M. met in a treatment planning room to devise the course of action. The MRI report, which was sent to me electronically the next day, showed the tumor had from grown from my last MRI in December; it now measured 18.6 millimeters by 10.4 mm by 10.6 mm, compared to 13.3 by 8.6 by 9.9.

The terminology in the report amused me, and I imagined a spotlighted Beat poet or a rapper riffing on stage using the following phrases:

Expanded sella
Transaxial
Craniocaudal
Necrotic degeneration
Residual peripheral enhancement
Hypoenhancing mass
Inferior displacement of the optic chiasm
Deviation of infundibulum

After the planning meeting, Nurse B. came back and announced my treatment would last one hour. An older doctor or tech, stocky with salt and pepper hair and a beard, positioned me on the Gamma Knife machine. Then he fastened another head gear to the frame, and I heard cracking sounds and felt pressure in my skull. It made me think a mobster was sticking my head in a vice and turning the lever—to a much lesser degree—or using his meaty hands to squeeze my head like a grapefruit.

My body moved in and out of the tube for about an hour, and then Nurse B. and the tech came back into the room. I felt woozy transferring from the table to the wheelchair, and I feared the CSF leak may cause me to pass out. When I returned to the patient area, Dr. W. removed the frame and placed two small staples near the pin hole that leaked CSF.

A short time later they wrapped me in a head bandage, fed me some toast and discharged me.

My wife Pam took some photos of the ordeal, capturing the gory details. I don’t think I could look more gruesome if a Hollywood makeup artist made me up like Freddy Krueger. However, the more accurate cultural reference is Frankenstein. That’s how I looked and felt.

Take a look at the comparison of these two profile photos: one from the post-op period in 1985 and the other from the recent Gamma Knife day. I retained the shape of my boyhood head in adulthood, but now gray hair is sprinkled throughout.

Florida, 1985.

Gamma Knife, side angle. Photo by Pamela DiClemente.

At home, the cranial pressure seemed elevated and my head ached, especially when moving from one position to another—most notably when leaning my head against the pillow to go to sleep.

I was given instructions to take Tylenol when needed and Dr. W. also prescribed an antibiotic.

I have a series of follow-up appointments scheduled in the next few weeks, and it’s too soon to tell whether the Gamma Knife procedure was successful in restoring normal eyesight (going from double vision back to single).

But while off a couple of days from work, while recovering and lying in bed, I thought about being sick and how when you’re in the moment—whether suffering from the flu or healing from a broken bone—you have the sense you will never be well again. You can’t remember a time when you didn’t feel bad.

Head bandage selfie.

It’s similar to living in a cold climate—like here in upstate New York—enduring harsh winter temperatures and heavy snow and never believing spring will come—until one day it does. And the next thing you know it’s a balmy summer day and the sun is shining, the air warm, ice cubes rattling in glasses of lemonade and lawn mowers buzzing in the neighborhood. And you think, I can’t remember what winter felt like.

Selfie of two small staples puncturing my forehead.

That’s the way I see this health situation. I consider it a short interlude of hardship to endure before I reclaim normalcy. At the same time, judging from my more than 35-year experience with a pernicious craniopharyngioma, I sense this is not the end. More trials will likely come, but my fear is diminished because I already know what to expect, as I can anticipate the movement of a tumor that is stubborn but not swift.

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Radiation Oncology Follow-Up

I had a recent follow-up appointment with my radiation oncologist to discuss the treatment plan for the regrowth of my craniopharyngioma (pituitary tumor).

Dr. M. said the team believes Gamma Knife radiosurgery offers the best option for delivering precise, targeted radiation—without affecting nearby cranial nerves—as opposed to hitting me with five separate radiation treatments.

Gamma Knife image. UT Southwestern Medical Center.

Nothing is scheduled yet, but I recall the last time I had Gamma Knife in 2012. I remember the surgeons drilling screws in the surface of my skull and attaching a helmet that looked like an old metal macaroni strainer to my head. The procedure was quick and I had no issues recovering from it. So here’s hoping for the best. I came up with a short poem to summarize the treatment plan.

Regrowth

Tumor back.
Seeing double
In field of vision.
Radiation set.
Gamma Knife
Gonna restore
Sight and
Eradicate tumor.
Or at least that’s
The surgeon’s plan.
I’ll believe it
When two becomes
One again.

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A Compulsion to Create: Reflections for 2020

Here are a few thoughts as the calendar flips to 2020. I hope these musings do not seem like platitudes. I am giving in to reflection as a way to maintain perspective during this season of transition.

I am working on multiple side creative projects—in the genres of poetry, film, theater and memoir. Some may bear fruit in 2020; other may die on the vine.

With advancing age, declining health and the combination of full-time work and family responsibilities, I realize I am limited in what I can accomplish as an artist. And quite honestly, I wish I were not so driven, so fueled by ambition to write and attempt—yes, only attempt—to create art. I wonder: How many hours have I spent trying to attain my creative goals, and what have I sacrificed along the way?

But I have learned some lessons in pursuing my side projects, and these can be applied to anyone working toward a challenging goal—whether the person is an artist, entrepreneur or business owner.

Kitchen Garbage Can. Photo by Francis DiClemente.

This is just my opinion, but I believe effort beats intelligence and discipline is more important than talent. You have to show up and do the work every day. And it’s important to appreciate the process, to pause and acknowledge minor achievement as you inch toward fulfillment of your ultimate goal.

The biggest lesson I have learned is that desire does not dictate success. Striving does not always equal triumphing. In this life, your wishes will get trampled and your dreams denied. Accepting this reality means pressing on despite the inevitability of failure, while realizing you can’t control your fate. It means being okay with who you are in the moment and not who you need to be to consider yourself worthy. That’s the fallacy. You are already worthy. You have already achieved—even if your painting does not hang on a gallery wall or your product appear on a Walmart shelf.

Slanting Desert Tree. Photo by Francis DiClemente.

I guess that’s it. At nearly 51 I see the truth of my latter years—I won’t achieve my childhood dreams. But the adult here recognizes the goodness of this mundane life—the opportunity to live and work and spend time with family. How lucky I am to just be here. To be an entrant, to earn a participant ribbon in this race.

I wish you much happiness and success in the new year.

And I will close with a couple of new, reflective poems related to the above topics:

Syracuse

This is the city where I learned to be an artist, waking at 5:30 a.m. every day to write—pecking away at poems that remained tucked inside the electronic hearth of my computer, never traveling the world, never finding an audience. This is where I learned that sometimes ambition and discipline are not enough, that there is no magic recipe for success. This is where I learned that you have to accept rejection and bear the shame of failure without getting deterred, rising again each morning to face the blank page—fully aware that your words may never be seen by other eyes. This is where I learned that although I may not be good enough, the compulsion to create demands that I write—no matter what. This is the city where I learned that for me being an artist was never a choice.

Shift in Thought

At some point
you have to
deal with the
Who you are
instead of the
Who you want to become.
By now the
form is fixed.
You are
complete as is.
Don’t expect
anything else.
Don’t hope
for anything more.

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Double Vision

 Disclaimer: The following is my interpretation of what the doctors told me recently. The medical information may not be 100-percent accurate. I wanted to get the details down primarily for my benefit, as a log of my symptoms, hospital visits and treatment plan.

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This month marks 35 years since surgeons at Upstate University Hospital in Syracuse extracted a tumor that had been growing on my pituitary gland.

At Disney World in the winter of 1985; the scar from my Dec. 1984 surgery is visible and my hair has not grown completely back.

Subsequent surgeries to remove regrowth followed in 1988 and 2011, along with Gamma Knife radiosurgery in 2012 as a preventative measure.

Two for the Price of One

I had planned to write my annual post, expressing gratitude that I remain tumor free, but it appears a residual craniopharyngioma is now affecting my vision. I started experiencing double vision a few weeks ago, mainly when looking at someone or something from the front—at a distance of a few feet—or at a 45-degree angle. I noticed the faces of my colleagues would separate when I glanced at them across our cubicles. Also of note: I see fine with a hand over either eye. The double vision comes when I look at things with both of my eyes.

Craniopharyngioma example

I went to see my eye doctor prior to Thanksgiving; after a series of tests, he stated my eyes seem to be crossing, whereas previously they had diverged slightly. I asked if the double vision could be caused by his new eyeglass prescription and he said, “No, it’s definitely something neurological.” He contacted my neurosurgeon, who scheduled me for an MRI.

The MRI was performed with and without contrast on Dec. 4, and I saw the neurosurgeon later in the day. When Dr. W. came into the exam room, chewing gum and wearing brown tortoise shell glasses, he said, “OK, so we have some good news. The scan is beautiful, very clear. There’s very little change from the one in September, nothing pressing on the optic nerve. But we have to find out what’s causing the double vision.”

He said he believes scar tissue in the sella turcica, a saddle-shaped cavity at the base of the brain where the pituitary gland rests, is affecting the cranial nerves and causing the double vision.

He said surgery may not help and could exacerbate the problem or damage healthy nerves and blood vessels in the region. He recommended an appointment with Dr. M., the radiation oncologist who teamed up with Dr. W. for the Gamma Knife procedure in 2012.

I asked if the double vision could be caused by a new tumor in another part of the brain or by an aneurysm. He said no. I asked if it could be caused by a stroke and he said, “No, you would have other symptoms.”

He also offered some positive news—he mentioned my eye doctor could prescribe prism lenses, an add-on to prescription glasses that can correct double vision. It doesn’t address the underlying problem, but it allows you to see normally.

I felt relieved because the MRI had not revealed a massive tumor pressing on the optic nerve or infiltrating another area of the brain. No insidious glioblastoma—giving me a death sentence within six to nine months. This was my old friend/foe visiting me again—a benign tumor, slow- growing but capable of causing problems, a health issue leading to concern but not panic.

Radiation Oncology Consultation

At my next appointment on Dec. 13, the tall, thin figure of Dr. M. entered the room and I noticed his hair had become gray in the intervening years. He shook my hand and said, “We’ve made a lot of progress in seven years,” referring to more advanced procedures in radiation treatments.

He held up his right index finger and had me follow it. He asked if I was seeing double vision all the time and whether it was getting worse. “Are you seeing two of me now?” he asked. I said, “Yes,” and I used the wall bumper as an example. “If I look at that thing with both of my eyes, I see two. When I hold a hand over one eye, I see one.”

I told him the eye doctor had performed some tests, including a visual field test, which had showed defects in both the right and left sides.

Dr. M. told me the tumor was tube-like in appearance and near the cavernous sinus, impacting the cranial nerves that control the muscles of the eye.

He recommended five radiation treatments over the course of a week, as opposed to another round of Gamma Knife surgery. He ran through a series of figures—percentages about the efficacy of treatment compared to the risks. I had trouble following the complex information, but the basic idea is to give me the highest dose of radiation possible without causing any damage to healthy structures, e.g. blood vessels in the cavernous sinus. A safe but effective course of action.

He said I may experience some fatigue, but I can return to work every day after the treatments, which should only last about a half hour.

He also made a disheartening statement. “There’s no guarantee the radiation will correct the double vision. But if we don’t do anything, the craniopharyngioma will keep growing.”

Strapping on the Goalie Mask

On Monday, Dec. 16, I received a call at work from Upstate to come in do a radiation map of my brain. When I arrived at the Upstate Cancer Center in the afternoon, the waiting room was packed with patients sitting in the large, comfy faux leather white chairs; one irate man complained he had been waiting longer than an hour past his appointment time. He dropped some profanity and his blonde-haired wife tried to calm him down, to no avail. “This is fucking ridiculous,” he said.

A female radiation doctor called me and brought me to an exam room. She had me sign the treatment consent form and asked if I had any questions. I inquired about side effects. She said the main side effect is fatigue; patients can also experience headaches and some hair loss. She added, “Think of it more like surgery than chemotherapy.”

Then a male tech with dark hair ushered me into a large room with the CT machine. A number of nurses and techs scurried about. They asked me to remove my sweater and dress shirt, leaving me with just my white undershirt and khakis. They had me lie down on the table as they positioned a few different head rests. Once they had the right one in place, they applied to my face what felt like a wet, tight-fitting mask—with the consistency of rubber or papier-mâché. The mask had numerous holes in it, but it was still hard to breathe.

The test itself took very little time; I remained still while the machine moved my body in and out of the tube. When it was done, they pulled me out and the male tech held up the mask so I could see it. I thought it looked like a goalie mask and I asked if could snap a picture with my phone.

Radiation mask

Song Rewind

Since the double vision began, I’ve had Lou Gramm’s voice playing over and over in my head, with the words from the 1978 Foreigner song titled “Double Vision”:

Fill my eyes with that double vision
No disguise for that double vision
Ooh, when it gets through to me, it’s always new to me
My double vision gets the best of me …

An interesting side note: Gramm was diagnosed with a craniopharyngioma in the late 1990s; the tumor caused headaches and memory problems, and Gramm underwent surgery to have it removed. The story is included in Gramm’s autobiography, Juke Box Hero: My Five Decades in Rock ‘N’ Roll, co-written by Rome, New York native Scott Pitoniak.

In conclusion, I present a breakdown of my current health situation.

The negative facts:

The tumor has regrown.

It is causing double vision

The radiation treatments may not fix the problem.

The positive facts:

No glioblastoma or other malignant tumor is swelling inside my head.

I don’t have an aneurysm and I did not suffer a stroke.

The craniopharyngioma is not pressing against the optic nerve.

Prism glasses can be prescribed to correct the double vision.

And so gratitude hits me again, as I feel lucky every time I step inside Upstate University Hospital, thankful that my heart beats and I can breathe, walk, talk, see and hear. Not everyone inside Upstate can say the same thing.

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Documentary Screenings

Co-producer Stu Lisson (left), actor Brian Rohan (center) and co-producer Francis DiClemente (right)

I’m excited to announce that this weekend we are screening our work-in-progress documentary The Real Bedford Falls: It’s a Wonderful Life, presented by Honest Engine Films. The first showing is at 12 p.m. on Saturday, Dec. 14 at Trinity Church in Seneca Falls as part of the It’s a Wonderful Life Festival. The second screening is at 4 p.m. on Sunday, Dec. 15 at the MOST Museum in Syracuse.

Drone image of Seneca Falls. Photo by Chase Guttman.

The film explores the connections between Seneca Falls, New York and Bedford Falls — the setting of the movie It’s a Wonderful Life. The documentary examines small town life in Seneca Falls, captures the excitement of the annual It’s a Wonderful Life Festival and celebrates the enduring themes of the Frank Capra classic. It features actors Karolyn Grimes (Zuzu Bailey) and Jimmy Hawkins (Tommy Bailey), film critic Leonard Maltin, Syracuse University professor of popular culture Robert Thompson, film historian Jeanine Basinger and Monica Capra Hodges, granddaughter of director Frank Capra. Former NBC Today show correspondent Bob Dotson serves as narrator. Here’s a short clip from the film.

 

 

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