“Turn him on his side. Is he breathing?”

“Yes, but every breath brings blood.” 

“Do you have a rag?”
“No, I am pulling the blood out of his throat with my hands.”

“OK, try to remain calm, I will stay on the phone with you.  The paramedics are on their way.”

“Please tell them to hurry!”

In this unstressed town, sirens are seldom.  Through pulled-back drapes the neighbors flung  open their eyelids and peered into the night.  When they arrived, the paramedics went straight to work.  They rolled me over and checked my vitals, searching for clues as to what was happening to this fifty-five year old ex-athlete with no prior health concerns.  With weapons drawn, policemen scoured the area outside of our home.  Later they would comment, “Only homicides cause that much blood.” Turns out, homicides and Grand mal seizures. Finding no perpetrator, they returned to the scene.  When they entered the room, I took mighty swings at the first responders, though my bout against the four policeman and two paramedics ended abruptly. I harbor no animus toward law enforcement nor medical personnel.  But then, fighting for one’s life always comes with a compelling amount of unanticipated aggression. Though I recall nothing of the sequence, the Missus said I resembled “Tyson in his prime.” Then she paused and added, “but drunk.”  Atop a stretcher, the paramedics wheeled me into the awaiting ambulance. 

Ten hours later, my craniotomy began.  The last words I spoke to my wife were, “I’ll be back!” so it was apropos when the neurosurgeon’s hands removed the top of my skull and replaced it with titanium. Later I would claim, “My exo-skeleton is prepped for the world of robots and artificial intelligence.”  

In the recovery room, my wife’s and daughter’s smiles greeted my return to consciousness.  My offspring fingered the blood-stained bandage attached to my head and asked the questions no five-year old should ever need to ask.  My wife snapped a few memorializing photos and hugged me tightly. 

The next five days of recovery consisted of meetings with all types of medical personnel -neurosurgeons, residents, oncologists, speech therapists, physical therapists, occupational therpaists, The graduate degree consonants were enough to fill an eye-chart which I could no longer read.

Returning to the world hasn’t been easy.  The right side of my body wasn’t functioning and while I’ve often been accused of living half-assed, I never actually intended it to work out this way. Relearning to walk, to talk, to think, all takes time.  Words like irony and aphasia eluded me.  Still bandaged, I began the thousand step journey with a Confucian mindset - I will make it to a standing position, to the front door, to that bush, to that light pole, halfway around the cul-de-sac.  The compromised balance and distorted vision blurred the lines of success. After every venture, I made my way up the stairs into the house for a nap. I was a walking Rocky film.

On day six, I returned home to a recliner chair, a thousand pages of puzzles and workbooks, and a new way of life.  With my almost paralyzed right hand, I attempted to hoist a pen and failed.  My grasping reflex hadn’t returned and channeling Yoda wasn’t working.  I stared at my appendage, willing it to move.  To lift, each independent finger required the effort of a 300-pound bench press.  Three days and five-hundred attempts later, I hoisted the pen to paper and began writing what I presumed would be the English alphabet.  The learned letters of my youth melted down the page like a Dali clock.  However, with the persistence of memory and time, I acquired the ability to print letters, and for the second time in my life, I learned to write in cursive.  

For three weeks, silence invaded my headspace - not the transcendent Buddhist monk type, but the inability to generate a thought.  External stimulus mattered.  If no one spoke, I couldn’t create.  When asked about a boat, however, I could use that word as an anchor to recall bow, oar, sail, cabin.  It was as if I was swimming, and the nurses were tossing out lifesaver rings, Hansel and Greteling me back to safe harbor.  I felt the synapses burning beneath my skull as new neurons added myelin and generated pathways around the open space where the tumor had been.  Eventually, I could stand sturdy upon the deck, initiate language in swells and troughs, and navigate forward with a new and efficient rudder.

Showering was never so unpleasant. The unexpected heat, the pressure of the water upon the skin, the blurriness of passing spray.  The sensory overload overwhelmed me.  Every two-minute shower required an immediate nap. And then I got to work.  Beginning with Connect the Dots, I progressed through word searches and crosswords to Sudoku and anagrams.  When I soundly beat my well-educated cousin at Jeopardy, I knew my brain had mostly recovered.  I had completed K-12 in four months.

The initial diagnosis was a Gran Mal seizure resulting from a grade 2 meningioma growing on my brain’s midline.  Grade 1 represents a benign tumor. Grade 3 means cancer.  Grade 2 is…well they don’t really know what to call it.  Imagine a baseball player in a never-ending rundown between third base and home plate and you probably get close.  A tightrope walker up a thousand feet on a windy day gets even closer. And if you can picture surfing with a great white on the same wave four feet behind you, you got it.  At some point, the constant vigilance and anxiety about the massive medical issue will wear out my renals and I’ll probably experience kidney failure long before the meningiomas take me.  I’m still processing it all though, like a kidney I guess.

Once removed, the meningioma leaves a cellular ring.  Put your kid intp the bathtub after a trip to the beach.  When she gets out, see what remains.  That is the target for radiation treatment.  

On day one, they create a personalized mask for you.  Laying a soft mesh of overcooked pasta across your face, they hair dry the noodles until they harden.  With baldness so imminent, the hair dryers divulge the medical establishment’s depraved sense of humor. Then they click the mask into the table, just so you can feel what it will be like, and you are considered stabilized.  At this moment, claustrophobia takes hold.  All thrashing and screaming is worthless, apparently.  The mask leaves waffle iron-like indentations upon your face which, when combined with your tears, looks like an Amazon river map.

Next, they review the schedule. Radiation comes in eleven day increments. They will deliver a specific number of Centigreys or Millisieverts into your skull.  The technicians will blush when asked to explain what these mean. You will turn to AI to learn about the various types of radiation exposure and consider the effects of Hiroshima and Chernobyl with the intent to comprehend your fear. You’ll learn about DNA destruction in neoplastic cells and cytotoxic modalities and the unique biology of the CNS microenvironment.  And then you’ll purchase a Spiderman comic book in hopes of understanding it all better, evidently.

                                                           By:

                                                    Lucy Schwill

The world is so loud to me—

louder than standing on a tarmac as a plane rolls in with blaring engines.

Headphones dull the roar, not the high frequencies of tinnitus.

I want to scream.  

Bright colored lights — blinking or still — send piercing pain through my eyes,

distorting all in their view.

Sunglasses diminish the effects, whether daylight, nighttime, or indoors.

Sometimes I think being blind would feel soothing —

better than looking through distorted prisms.

Imagine a Tilt-a-Whirl inside my brain:

Cars rise and fall, spin in uneven circles,

~Then the ride jerks to a stop and gravity forgets me.

My brain sloshes back and forth like a buoy in a wavy ocean.

My eyes feel like they roll on their own; inner ears betray the center.

Everything tethers to nothing, searching for something sturdy to hold on to,

Trying to find a balanced center where gravity seems to have disappeared.

Words and thoughts float around my head like water down a drain.

I reach for language but dizziness erases it, leaving me in a whirlpool.

Fatigue drags my head like a ball and chain most days.

My heart bolts across a room as if it has run a race it can’t remember.

Will I ever feel whole again?

It’s like finding one puzzle piece that fits among a thousand- 

a pattern forms, then a slight wack and all scatters again.

How do I make sense of all this?

Doctors and therapists say, “Time— six more months, keep doing your exercises.”

They try, then baffled, step away. 

 Did they ever ask if it still helps?

Maybe I just need more time.

I am left with an altered life-what should have been weeks

becomes eighteen months without an end…waiting for a miracle.

I inhale, let tears become faucets, reach for the tiny courage to begin.

Healing has its own pace, not ours, no matter how we try to control it.

We crave expediency.

This invisible disability eludes the experts but not me.

For now it lives in the shadows, cradling its bloodied shards

E. Martinez

that everyone knows

It reminds me

That not all actions

are that hard.

As the ant, trying to move that

rubber tree plant, learned

I too have high hopes.

There are no wolves inside me

There is a silo screaming at the ocean

That is too literal

A picture from my own IFS work/meditations, not a helpful metaphor for anyone else

But I found her today

And now she doesn’t have to scream at me 

“Kill yourself” or “kill or be killed”

Now I can take her by the hand and walk her to the ocean and scream together

Bright Lights Swirl

Corgi, Soft

Cool Air, Gentle Touch

Books Towering in Tall Stacks

Stories Read Aloud

My Library

WHEN WORDS WON’T COME

By Joan Allen Pfeiffer

There are those driving thoughts,

The ones you know and see.

Our gift to speak or write,

Sometimes spins and spins in me.

My brain can see these words,

They “tickle” with perception.   

I can get that first letter,

But I remain in some prevention.

Some words seem so very important,

Then others; maybe not so much.

Certainly the names of my loved ones are,

I think “not”, to trivial things and such. 

The week loosens its grip
one breath at a time—

shoulders soften,
the clock feels kinder,
and the sky stretches a little wider.

Friday arrives
like a quiet promise:

rest is coming,
joy is waiting,
and there is still time
to smile at the small things.

Step gently into the weekend—
you’ve made it here.

“In the end, she became more than what she expected, she became the journey, and like all journeys, she did not end, she simply changed directions and kept going.”

Looking but not seeing clearly

Through the fog in my brain

Everything feels slowed down

Surreal

Struggling to make sense of it all

Distanced from life

Behind a wall of rain

Alone

“Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you.” – Isaiah 46:4 (NIV)

September 23rd was my mother’s birthday. She’s been gone for decades now, but every year on that day, I hold her memory close — quietly. I never told coworkers or friends. It was something sacred that I bore with Jesus, just Him and me. His presence always carried me through the grief.

But that year… something else happened.
The next morning, September 24, 2013, started like any other day — until it didn’t. My husband and I were having a routine conversation, but he suddenly looked at me with concern. “Something’s not right,” he said. “Your words aren’t making sense.”

They were real words — just the wrong ones. My brain was trying… but the wiring was scrambled.

Within minutes, we were at the ER. And that’s when everything I knew began to disappear:
I couldn’t remember names of people I loved.
Not my grandson. Not my closest coworker.
I couldn’t even name the President.

It was terrifying — like watching your identity wash away, piece by piece.

The ER was quiet. Just Bob and me. But the noise in my head was roaring.
Tinnitus, which I had lived with for years, had turned into thunder. My heart rate dropped to 43. My blood pressure was erratic. I could feel myself slipping — but I clung to what I had left.

My daughter, Sherry, arrived and turned on music.
The music reminded me: I was still me.
Somewhere inside, the Lord was still holding me.

Later that night, the MRI revealed a brain tumor. They weren’t sure what kind — a meningioma? A cavernoma? There were no clear answers, just fear and unfamiliar terms.

So I did what I knew: I sang in the shower.
I prayed.
I whispered to myself the only words I could truly trust:
“He’s got this.”

Prayer:
Lord, I don’t always understand what’s happening in my body or my mind — but I know You are never confused. Thank You for carrying me through the moments when I lose my memory, my words, or even my sense of self. You hold all of me. You know every part. I trust You with it all. Amen.

Today’s Whisper from Jesus: “When you forget everything — I still remember you.”

I will write out what and how I experience my little world; often my writings are about my pets and their lives.

Here is a little story I wrote about D'Artagnan about twelve weeks ago when we had a winter wonderland of snow.

****~~~~****~~~~~

With a Dyer Wolf heart and sled dog dreams Little D'Artagnan race across the snow laden ground. Faster and faster his tiny legs and feet scurry, long fuzzy ears flying high in the air behind him as he reaches sled dog speeds.

Ancestral memories of Togo and Balto play in his mind: He is going to save lives!!

Invisible barrels and a snowy avalanche are evaded! He IS White Fang and Buck!

Another lap of dreams, snow falling and accumulating on his thick soft hair.

Whoosh! And Pivot!

Spurring another inviable obstacle.

He is the hero of the day!

My Little D'Artagnan, a Shih Tzu with a Dyer Wolf heart and Sled Dog Dreams discovered his love of snow!

I turned the water off. Thoughts are racing at light speed as I stepped back, finding a towel to dry my hands. “Where am I? Where was I? In the car? Where am I? How did I get here? Where is here?”

Thump, thump, thumpity-thump.

My heart is beating in my head and throat. I can feel the cold sweat forming at the base of my neck, slowly seeping into my shirt collar. I sigh trying to fight this feeling inside growing larger. Cold sweat in the crease of my elbows. My palms are sweating.

Finding five things to see… thump, thump, thumpity-thump.

Breathe, just breathe.

Whooshump, whooshump, whooshump, whooshump, whooshity-thump. The whooshing beats echoing in my head.

Inhale slowly, one, two, three, four.

Hold, one, two, three, four.

Exhale, one, two, three, four.

Hold, one, two three four.

Thump. Thump. Thumpity-thump. Just breathe.

I do not hear any gun fire, yelling, screaming or cries.

Thump. Thump. Thumpity-thump. Wiping my hands dry, again.

Thump. Thump. Thumpity-thump.

There is a brown door. Reaching for the pull-bar and opening it slowly.

Music is playing.

I open the door.

… at a restaurant.

Scanning tables and booths. Thump. Thump. Thumpity-thump.

I see my family and slowly walk to them. My neck is still wet. Thump. Thump. Thumpity-thump.

Sitting down and reaching for my water. The coolness fills my dry, hot mouth. Letting it pool, calming my tongue. Thump, thump, thumpity-thump. Slowly swallowing, feeling the contrast of my body’s warmth with the cold liquid.

Controlled breathing, smiling at my family.

Thump.

Thump.

Thumpity-thump.

Soft inhale. Sipping more water. Palms are dry again.

I am safe.

The time is gone.

But I am safe.

Glistening drops of dew dripping from the stems and twigs, as fluttering birds hop from one branch to the next, before gliding to the feeders.

The grass is damp as puppy shakes each paw with every step. The look of utter dismay as he trudges the grassy jungle to his perfect spot.

Racing back, shaking his paws on my feet, then bouncing to my lap, we sit and enjoy the calm of the new day. Thankful for the serenity of the hour.

Fingers combing his soft hair, as we watch fledglings and their parents at the feeders fluttering between perching bars.

Lord Leopold joins us on the sofa. Head bumping my knee, requesting his presence be properly appreciated.

I pet his soft fur as he nuzzle a little more then purrs and kneads leg.

Gratitude.

Safety.

Comfort.

Peace.

Finding the Joy in a world of unwanted constraints.

Thunder rolls in the distance. The soft rays of sunshine weave in and out of the trees guided the wind. The clouds are grayer. The scent of rain is stronger.

I am flanked by my security escort as I check the new growth in the gardens.

Gratitude.

Thankfulness.

My fascination with growing plants.

Cold drizzly replaces the flickering rays of light.

Misty, calm fog hugs the bushes.

Inhale the scent of morning rain.

Feeling the coolness on my arms.

Watching both fur babies dart back to the safety of the porch.

Walking back join them.

Sipping tea.

Snuggling again.

Thankfulness.

Gratitude.

Peace.

Solitude, but not lonely.

Smell of coffee, eggs, and bacon...

Feeling loved.

Despite the constraints, I choose to find the Joy.

“And how many days will I be coming?”

“Thirty-three.”

“When will I lose my hair?”
“For some people, it’s a week.  Others take a bit longer.”
“Um, anything else?”

“You get to keep mask when you’re done.”

“Awesome.  This will terrify the neighbors.”

The technician will pull out a phone to exhibit photos of the ways people have displayed, decorated or disposed of their morbid trophy of accomplishment.  The scene harkens back to Tutenkhamen’s death mask.  How strange to wish immortality upon our mortality!

The shortest weekend of my life passes. Monday morning, I enter the waiting room.  Several hunched forms glance upward, give knowing nods and then return to their internal meditations.  The receptionist’s smile is the sunflower in this dungeon. Some patients are alone.  Others come with handlers.  The absence of sound has a presence.  I check in and find a chair. On time, the door opens.

“Mr. Craig.”

I take the first twenty steps of my most arduous journey.  Yellow circles with three black pizza slices stare out at me from the wall.  Radiation Room. Stay behind this line. This cement wall is approved to be twenty feet thick. The technicians greet me, place my mask over my face, ask me to bite the mouth piece and lock me in.  The panic never passes.  Fortunately, the techs use magical words like You got this. This one will be easy. Pacified while gnawing a pacifier. 

The Tomo Therapy Hi-Art radiation machine resembles an over-sized Roomba.  It’s intended to destroy tumor cells, with side effects including: fatigue, nausea, vomiting, hair loss, and weakened immunity.  It’s a minor step up from bloodletting.  The technicians provide a foam ring, which you set between your fingers and, during the treatment you pull on it because they assume it will stop you from miming something. The invasive mouth piece prevents you from screaming. 

There will be a twenty-second CT-scan, a repositioning of the table. If you close your eyes, it will feel like a plane dropping from the sky, and then, as it hovers and traverses back and forth over your face, a short beep sounds.  Your intuition will suggest this is complete fraud.  We have traveled to the moon and to Mars.  We have robots and artificial intelligence. We have solved for quantum physics.  And yet, this vacuum cleaner doing an imperfect R2D2 impression is giving me my best chance for survival? 

A robotic voice from the intercom. “We will now perform the CT-scan. Please remain still.”

I call upon the Force to assist me, to no avail. The sweating begins.  The mouthpiece pushes too hard against my teeth. I try to shift the discomfort but my head is locked down. Anxiety takes over and I start to shake.

The intercom lashes out again, “Beginning radiation.”

What if the Russians attack right now?  How will I get out of this thing? What if the power goes out? Has there ever been a fire in here? What if Michael Meyers comes in looking for his twin?

As the machine spits radiation into my skull, in the glass-bottom of the reflective Roomba, Hannibal Lecter stares at me. We all wear masks, but most of the time we get to choose them. I am a victim who appears like a perpetrator. I feel for the foam ring, pulling at its edges with a grotesque intensity.  And then it’s over.  The seconds between the final beep and the technician’s entry feels like all of human history. 

“Ok, you’re all finished. One done.”

It must be what they feel in confinement, only instead of freedom, the outcome here is unknown. After all, this may not cure me.

Much of your introductory time is spent assessing the various stages of health for the people in the waiting room.  That guy looks healthy, probably leukemia. That guy has been to the bathroom three times, definitely prostate. That lady smells like cigarettes - lung cancer. Until those faces start to speak to you.

“What are you in for?”

“Something tried to murder my brain so I whacked it.”

Italian heritage never fails to find humor in the macabre.

“When do you get out?”

“Thirty-two treatments.”

”Hang in there, man.”

After a time, you look forward to those familiar fierce faces, forgetting that these fast-forged intimate relationships are short term.  Each interaction is a virtue. Cursory conversations squeeze stronger with every question until we’ve wrung a story out of every remaining healthy cell.  Once complete, the silence weighs more.  Each day, a new malady arrives upon a fearful face which will soon turn fierce.  Perhaps this is why they hand out masks.

My body awash in sunlight and sweat ) woke in a panic, I could not move my Left arm and yelled for my husband Paul, I need to see a doctor or a chiropractor Paul said Let's call Zeno first. Paul made the call and Zeno arrived in roughly a half of an hour. Paul put the massage table together on The veranda, I laid down on the massage table and Zeno tested my reflexes with no response. Zeno suggested that I see the chiropractor. Monday morning I didn't drive self to work I told my boss what happened and worked my full shift. Paul picked me up at 4:00 and we went to the chiropractor's office. I still couldn't move my left arm. The chiropractor tested my reflexes and still no return. He suggested I go to the emergency room. Said I could wait until the next day but if I didn't feel anything within the next 12 hours I should definitely go. Checking in to the emergency room we found out that the hospital was still enforcing their covid protocols and gave Paul a hard time about coming with me. The triage nurse asked me if I was safe and a few personal questions I was offended by. She escorted me to a room behind a curtain with a bed a chair and a monitor Four days later Paul picked me up and took me home. I was scheduled for physical therapy at the hospital but my Mother-In-Law suggested that I see her physical therapist on the East end which was where we lived. Paul and I talked about it and we decided to go with the East and therapist rather than the hospital. Therapy began the following Monday. I attended therapy for3 months and then Bonnie told me she did not have an occupational therapist that I could see in her office, that I would have to go back to the hospital to get occupational therapy February 2022

The indoor outdoor dining room table was laden with pasta salad and home made sourdough garlic bread. The four of us enjoyed wonderful food and great company. Toward the end of the meal, I noticed that I wasn't able to chew correctly and I wasn't feeling so well and apparently I wasn't talking that well either our host Steve said should le down on the couch. Which I did. We spent the night in the guest room and left the next day. We went home and waited until 9:00 then drove to the emergency room.

1.when did you realize you were having a stroke? Mid day at work and reading became an issue and I had headache

2. How old were you? I had two sets of strokes. MY first back in 1995 after the birth of our son. The most recent set was in 2021-2021 I was 53

How old were you when you realized you wanted to be a writer? 12, I had written a poem for our local news paper submitted by my English teacher

3. what year did you have your first

stroke? 1995

4. How many setbacks have you had during your recovery, if any? Ten including falling and breaking my collar bone straight out of the hospital.

5. What was your first aha moment? in your recovery? After I saw a psychologist who helped me realize that my recovery was not instantaneous and it may take years if at all.

6. What kind of stories do you see yourself writing in the future? Romance

7. How did you find the writing workshop? My PT had just received an email on the first day we were working together about this program and she forwarded it to me. She verified that strokes were a part of the program.

8. Who has been the most helpful during your recovery? My husband

9. What would you tell other stroke survivors is the most important part of your recovery? Staying positive and not being too hard on yourself.

10. What would you recommend other stroke survivors do during their own recovery? Take care of your mental health, it is usually forgotten.

“Good morning, Josh.”

“You ready?”

“Is anyone?”

The Mask, the Roomba, the Ring.

“Thirteen done.”

One day, you reach up to scratch the sunburned itch on your scalp and return with a birds nest  between your fingers.  Follicular failure. The look transitions quickly from Medusan to Dickensian, with the snake-follicles lifting and departing the scene with unmatched rapidity.  The afterglow requires lotion and sunscreen.  The post first-shave attacked-by-a-pterodcatyl look isn’t pleasant.  When remedy is unavailable, adaptation occurs overnight. The morning mirror screams, “I guess this is you now!”

Once dreaded, pale scalps indicate a person is generally about halfway through treatment. It is a bald crest that suggests the rest of the road is downhill, although no one ever says that. No one knows if the outcome will be hidden beneath a white sheet or displayed proudly upon renewed flesh. This explains the gratuitous head nods.  Everyone in the waiting room keeps an internal scoreboard for everyone else in the waiting room. The thirty to forty day difference between new arrivals and lifers is the savings account where we make deposits with days of our lives. We refer to newcomers as “poor guy” and wish the veterans “Good health and wealth.”  It is a competition amongst compatriots where we all want everyone to win. 

“Mr. Craig.”

“Good morning, Josh.”

“You ready?”

“Is anyone?”

The Mask, the Roomba, the Ring.

“Sixteen left.”

The language changes subtly.  Past-speak has given way to future-talk. Like the radiation, the words shift something in my DNA. Suddenly, the white sheet falls and gives way to potential Christmases. A bell signifies the end of treatment. The entire staff joins in the celebration and once-absent family members arrive to “ring the bell” with the patient. In the waiting room, there are knowing smiles that someday soon, you too, will ring the bell.  As opposed to dreading the daily monotony of battling death, the bell becomes a harbinger of hope.

“Mr. Craig.”

“Good morning, Josh.”

“You ready?”

“Is anyone?”

The Mask, the Roomba, the Ring.

“Seven left.”

During Vietnam, soldiers described the war as “hours of boredom with moments of terror.”  Radiation treatment requires rest.  Long naps become a requisite part of your day. You have to decide how much physical activity you can handle.  For the first several weeks of treatment, I walked the uneventful four-mile trek to my appointments.  Wanting to prove to myself that this wasn’t going to take any part of me, I often arrived sweat-soaked and breathless.  Many times, it took the edge off the anxiety.  Eventually though, I’d approach the office door and the trepidation would commence.  If you are honest, being locked down and subjected to Gamma rays penetrating your skull is always terrifying.

“Mr. Craig.”

“Good morning, Josh.”

“You ready?”

“Is anyone?”

The Mask, the Roomba, the Ring.

“Two left. You’ll be ringing the bell on Wednesday.  Let us know if you are bringing anyone.”

Five weeks earlier, I assumed this was a solitary experience.  I was partially correct.  There is a part of this which no one who hasn’t undergone radiation can ever understand.  The internal battle to decide how hard to fight for your life.  The drive to stay optimistic in the face of fear.  The wish to keep loved ones insulated from your struggle.  The constant uncertainty blended with the complete devotion to hope and a million other petty, insignificant things that have no value to anyone but you. But then, surely the external forces bolstered my resolve.  My wife and child went through their own versions of fear and struggle and lost hope.  I owed it to them to join me.  

“Welcome everyone.  He made it.”

Though they have done this a thousand times, the technician’s understand the moment’s magnitude.  They offer congratulations to each of us.  I ring the Christmas bell.  There are hugs and smiles and a certificate of completion.  It lasts about two minutes before I retreat to the front desk to make an appointment to see if this ordeal was all worth it.

“Mr. Craig.”

“Hi, Dr. Rivers.”
“We have some news for you.”

Patients look for indicators. When a batter stares down the line at the third base coach for a sign - a hand swiped across the chest followed by a cap brim touch means bunt - it is blatant. With doctors in the dying business, the signs are more subtle.  Micro-expressions like a twitched lip, or a crows foot at the corner of one eye, indicate the scans have shown cellular damage and you should probably start thinking about your estate.

“Some news?”

I peer into the doctor’s face, seeking sanctuary in the crevices.

“The scans show the tumors have stopped growing, and the remaining cells are gone.”

My exhalation is louder than I expected.

“However…”

The bat is suddenly heavy. How can one word weigh so much?

“A fistula has developed.”
“I’m sorry?  What is a fistula?”

“When an artery a vein connect, the blood starts to pool.  This sometimes happens after brain surgery, when the blood vessels are trying to find new pathways through the dura.  It causes a traffic jam, can increase blood pressure and may eventually burst into a brain bleed resulting in stroke or death.”
“….”

“Are you ok?”
“Mmm hmm.”

“I am referring you to a neuroendovascular surgeon.”

As my treatment progresses, the professional Wheel of Fortune difficulty increases.

“Is it treatable?”
“He can tell you more.”

Obviously, my next question to her will be, “ Do you have a machete?” Spoken like Cheech and Chong with my hands making the “Z” for Zorro motion.

🔪

She looks at me, quizzical. Now I have to explain my ADHD brain processing jumping from Christmas in July to “machete”.

I say, “I want to invite the behind the fence neighbors, and we have a thicket jungle, so we need to chop our way through,” pause, my hands and arms are now demonstrating as I speak, “We need a good machete! - To hack our way through the thorny vines.”

And I say “machete” with a Spanish accent, again.

We are laughing. Me using machete to hack the thorny thicket is just a funny scene to be held. But I am so serious in this situation, this task before us.

Time passes

And then as she is leaving I text her …

Oh

And explain to your husband you need a GOOD Machete

Not a cheap one

And say “machete” with a strong Spanish accent - it makes it sound more urgent!

I am laughing I almost choked in my cantaloupe.

———-

I use to own a machete. It was a small one as far as machetes go. Handmade in the Philippines, blade was only twelve inches. It was good for plants in Florida. It was damaged in a move many years ago, and thrown away.

We need to find laughter in every day things, even in hacking our way through life’s ups and downs.

But at this moment I could not. I could not recall what had been upload to the account and which number I was currently doing. The frustration, the confusion, the painful headache. The throbbing, pounding pain while trying to do simply tasks.

Then I tried to solicit help from my husband, and like Emimen, begging for the words not to fail me. They failed, the buffering went round and round, stumble and fall, buffer, buffering, around and around again.

Frustration, anger, fear of failure, fear of rejection, fear of being incomplete - fighting it from my corner. Sheer exhaustion. Needing to rest, fear of time lost. Fear of having no choice but to rest as my brain begins to shut down more of my bodily functions - speech, walking, standing... Laying down, sleep finds me. My brain reboots.

I will need another nap later, and still be in bed before 2000. Sleep, awake, take medication, sleep, awake from pain, sleep, and start again.

I remember how overwhelming it was when I was trying to work after my brain injury. The sounds and visual stimuli from a regular school day were more than I could bear. Kids laughing/shouting, adults chatting, and announcements on the overhead speaker bombarded me, as I was trying to get to my office while dodging the kids who walked quickly or ran past me.

Just being in the hallway on a regular day brought on balance difficulties, headaches, nausea, speech difficulties and brain fatigue. You didn’t just notice, you took action.  When you began giving me a heads up about fire drills, intruder drills etc before they were going to happen, it was a ray of sunshine in the storm clouds of the overstimulating work environment. I was able to prepare myself by keeping my noise cancelling headphones with me and having my tinted glasses on. Participating with those items in place not only helped me, but was also an example to the students that grown ups can use sensory tools as well. 

Thank you for always listening, believing and remembering what I explained to you about my TBI. You were one of the few people at work that did. I am eternally grateful to you for that!

Your friend, 

Laura

The best part of my day is at the end of my day when I get to sit in my lazyboy chair , legs up and listen to a current book

1.Find your computer (Look under pillow, under couch, in your child’s toilet)

2.Open the lid (of the computer not the toilet)

3.Put on your reading glasses (Behind the ears and over the bridge of your nose) 4.Make sure the screen of the laptop is facing you and the keyboard is on the table ( if not, the computer is upside down, apparently)

5.Scan the keyboard ( with your eyes) from left to right

6.The power button is on the top right and looks like an apple with the stem coming out of the top

7. With your finger (whichever one feels appropriate for this moment) press the button until the computer lights up

Troubleshooting: If your laptop does not turn on, you forgot to charge the battery, plug it in and go back to bed.

It may have gotten wet in the toilet. Throw it away and buy a new one.

How to Recipe for rehab after stroke. 

Ingredients needed

1.Chair

2. Duck tape or gorilla tape 

3. One pound bag of flour

Use duck tape to secure the bag of flour 

4. Two Eight

ounce cans of veggies. 

5. Broom, Or mop handle 

6. Access to a bed or flat couch.

As humans we take for granted being able to perform simple tasks like walking or using your hands or being able to see. after a stroke being able bodied is not the same as before the stroke. Learning to walk, take a step up a curb are things I had to practice a lot. The exercises here are some of the rehab exercises I have learned over the last four years.

First things first let's walk around the house to warm up the body, legs mostly. Establish a route around the house interior perimeter. Your start point is your end point. Make at least 3 full turns around the perimeter to begin then  Take a five minute break. Repeat the walk. The goal is to be able to walk without taking any breaks for a half of an hour. I'm still working on this goal. It's the toughest goal for me as with my limited vision making the walk an everyday adventure is not something I have accomplished yet.

For the next exercise you will need the chair. Back the chair up to a wall or door. Sit in the chair without using your hands to hold on. Space feet apart shoulder width stand up straight  then sit down then stand up then sit down, do not hold onto the chair to stand or to sit, repeat sit to stand five times then take a two minute break. repeat five times then take a break.

Now we need the two cans and the chair. Sit in the chair pickup one can, hold can to your left sholder now push the can up to the ceiling, exhale breath as you push up. Repeat ten times for each hand. Take a five minute break. Between arms. The goal is to be able to do 25 for each arm without taking a break. Stay seated put the bag of flour in your lap. Use both hands to pick up the bag of flour and lift it over head. Place hands on bag so that pushing bag over head is easier. Use the same breathing as you did with cans. the goal is 100 times without taking a break. 

Take the broom or mop handle and lie on your bed put the broom on your legs, place your hands a shoulder width apart. Lift broom over head keeping arms straight and repeat.  Repeat five times and take a break.  With the broom in your hands, bring the broom to  your chest and push your hands to ceiling then bring arms back chest. Don't forget to breathe. Repeat five times then take a break. If you have  a cane that is heavier than the broom use that and repeat the exercise. Do not push yourself to hard. It's a marathon not a sprint. Try to create a routine around the exercises. Try doing them 3 times a week to start. After you have the routine down then add one day to the routine . 

The best part of my day is awakening in the twilight of dawn, when the first light makes my candles glitter like tiny stars. Their gentle glow mingles with the soft blue morning, while birds begin their cheerful chorus outside my window. I cradle a warm cup of coffee, breathing in its rich aroma, and open my Bible. The quiet seems to wrap itself around me like a comforting embrace, and I feel God’s presence before the busyness of the day begins.

Living with aphasia means that words sometimes hide from me, and I patiently search until they come into view. But in these sacred moments, I do not have to struggle to be understood. God’s voice feels as warm as the candlelight and as peaceful as the colors of dawn. He already knows every thought in my heart, even the ones I cannot yet express, and that gentle assurance gives me hope to greet a new day.

I am driven to create. I am so driven to create.

I am restless in wonderment. I am so restless in wonderment

I ask myself so, now what.

I am longing to learn how to BE, how to go with the FLOW.

The raw edge of competing. Being the best, I can BE.

It is a force that is burning so deep within ME.

So, what do I do? How do I choose? What do I choose?

As I am learning to BE, as I am learning to BE

Today, I chose ME!   Today, I chose ME!

It has been two years since your fall while playing pickle ball.

A new label, it is a TBI. A fall that changed and impacted us all in ways that we had no view into.

As I reflect on who you are, who you have become, I cannot stop thinking about how important it is to celebrate it!

Celebrate that it could have been worse; that you could not have progressed consistently; that you could have given up; that you could have stopped caring about yourself; and others; that making a difference or connecting with others didn’t matter; that being aware and concerned about world things were unimportant.

You could have stopped desiring to create a future to live into or drive to re-learn how to have conversations with others; or how you re-learned to walk without falling or how cognitive fatigue is real and can take you out or how too many distractions and noise can cause excessive fatigue very quickly and yet you just kept pushing on pushing on. Sometimes you pushed with grace, sometimes it was messy, but you have not stopped trying to be the best you can be.

I am grateful that you care to care, for yourself, for US, our families, and others as you design from a blank slate a future that is evolving as you continue to heal. The song, "Ani't No Mountain High Enough" rings in my head.

I am grateful for my learnings in how to dance to a different dance. A dance that changes in seconds and has allowed me to shift from WTF - to ok - it is all good. I laugh aloud more at the twists and turns, while looking in awe at you and the pure magic of it all.

To the juicy unknown, bring it on!

On luckier evenings, the cows and their calves will come up to my back fence as they move along the buffet line of grass in the field. The calves are very curious, but cautiously watch me. They have gotten braver but will skitter away if startled, often slowly returning. Eventually, either I or the cows will amble off as the sun begins to set over Hogback mountain, casting a dazzling array of colors across the sky as it gets lower and lower behind the mountain.

little spiders,

tiny spiders

In the middle of the night, Douglas walks into our bathroom and turns on a light. A flurry of activity is heard, then his head and torso lean from the bathroom doorway into the bedroom as he exclaims, "I just killed a large spider, and there are THOUSANDS of little ones all over the rugs and floor!”

I counter with motherly compassion and state, “The little spiders could be removed and taken outside and not killed by shaking the rugs outside.”

He is vehemently opposed to my humanitarian response. With disgust he insists on eradicating THOUSANDS of spiders. He demands information as to how they are in the house as he carries two spider-laden bathroom rugs across the bedroom, down the hall, into the laundry room, and throws it all into the washing machine.

I rise from bed to go see these baby spiders.

My mind is full of National Geographic and Discovery Chanel images of a floor covered in spiders – THOUSANDS of them. I anticipate them moving across the floor, expecting to find the floor appearing to move in a waving pattern from the activity of THOUSANDS of spiders racing about. I am greatly disappointed. I see no spiders.

Surely there must be some spiders to be found. There is no rampage of little bodies fleeing and taking cover. I am vigilantly scanning the floor trying to find one spider. I find maybe ten.

I calmly state, rather disappointedly, “I don’t see THOUSANDS of spiders.”

Now back from the laundry room, and standing beside me, Doug is frantically exclaiming, “Open your eyes! They are everywhere!” his arms gesturing in wide circles over the floor, walls, and countertop. I keep looking. Yep, I see ten; only ten tiny bodies.

I am more concerned about Doug’s William Shantner in the movie “Kingdom of the Spiders” reaction to THOUSANDS of spiders than not seeing them.

I stand firm, “There are not THOUSANDS of spiders. I see ten, maybe twenty at the most, tiny baby spiders. That is it. That is all I see.”

I leave to check the washing machine, half expecting, maybe hoping at this point, to find the drum of the machine and the rugs sprawling with baby spiders. I tentatively look around the rim, then inside the machine, nothing, not one spider. I begin observing the white rug.

I see none.

I carefully grab the top rug and pick it up for closer inspection. Again, I see none. I do find debris and birdseeds – millet, fennel, and debris brought into the house by tiny fury paws, but I do not see an invading army of THOUSANDS of baby spiders.

I drop the first rug, then carefully reach for the second one. I am turning it over, nothing has crawled on to my hands, I look closer, I see three tiny, 3mm from tip of leg across the body to the tip of the opposite leg, reddish-brown tiny spiders, three – one, two, three. In my mind I am the Tootsie Pop Owl finding how many licks it takes to get to the center of the Tootsie Pop.

Three –

one,

two,

three;

not THOUSANDS.

I am truly disappointed with my Discovery Chanel moment and being denied the opportunity of seeing THOUSANDS Animal Planet spiders.

Meanwhile, Doug is in the bathroom, squashing a spider he has found. Watching him crush the teeny body with his thumb, I tell him, “I cannot find THOUSANDS of spiders, only a few.”

Infuriated, he demands, “Put your glasses on! Where is the bug spray? I can’t find the bug spray!”

While he is frantically searching the cabinet under the sink for bug spray, he is exclaiming, “Our house is going to need to be fumigated! We won’t be able to sleep ever again because of THOUSANDS of spiders!!!”

Now my forehead is scrunched watching him search the cabinet. I calmly inform him that we only have wasp spray.

He grabs the Windex from under the sink and begins spraying the floor.

“You’re going to spray them with Windex?”

“I have to use something to kill them!”

I calmly gather the rest of the rugs and see maybe two or four tiny spiders. Doug is spraying Windex all over the place.

I leave the bathroom as I say, “Okay, Gus,” in reference to the movie “My Big Fat Greek Wedding”, where Gus Portokalas uses Windex to cure all ailments.

I find myself back in the laundry room re-examining the rugs and the washing machine drum for any sign THOUSANDS of spiders. Bird seeds, puppy and cat debris, more bird seeds … again, maybe five spiders. I am so…disappointed.

I put the other rugs into the drum. Program the settings and run the machine.

Back to the bathroom I return. Doug is wiping the floor with a large wad of wet paper towels, then heads to the kitchen to throw them away. Scanning the floors, walls, counters, tub, shower, nothing – at least not a spider army of THOUSANDS. Sigh.

I wash my hands in the sink. The hot water pressure is extremely low. I theorize the washing machine is using the pressure. But it is drastically low, not normal at all.

I again, return to the laundry room to check the washing machine. Through the glass top, I make note that there is a lot of detergent on top of the rugs that has been additionally added to the detergent I had previously placed into the capsule.

And there steam.

There is a lot of steam.

Why is there any steam?

I look at the settings. It has been changed to 100% hot.

WHAT?

Now my husband loves his hot water. Our hot water heater is at a higher setting than the majority households. This water is hot enough to steep tea in a cup if one so desired. And it is most certainly hot enough to soften the rubber backing of the rugs, and leaving rubber debris fused to the washing machine drum.

Immediately, I stop the cycle. I reprogram the cycle back to the original settings.

I inquire, “Doug why did you set the washing machine to all hot?”

Emphatically he states, “We have to KILL THEM!!”

I quip, “… and drowning them won’t be enough? You need to boil them?”

“YES! There are THOUSANDS of them!!!”

“I am not melting the rubber off the rugs to boil spiders, drowning them in lukewarm water will have to suffice.”

Somehow, he returns to bed and goes back to sleep.

I am still disappointed in being denied my Discovery Chanel and Animal World moment.

THOUSANDS were not found. Such a disappointment.

——————————————————————

Two weeks later a tiny 3mm bodied jumping spider is spotted on my dining room table. She was absolutely adorable. Tried to catch her to release her outside, safely, but she jumped away. I am sure more of her siblings will be found… somewhere.

At our initial meeting, he recommended an angiogram. Angiograms involve a CT scan, a white metallic-tasting dye delivered as though from a medical milkman, and then a scream-inducing catheter jammed into either your wrist or your groin and driven up three feet through the artery which harbors the fistula.  Throughout the whole procedure, you are awake.  Imagine a scene when aliens kidnap and experiment on the human and you get close.

“Yep, it’s a fistula.”

“Wait, I thought we already knew that.”
“We just wanted to get a better look at it.”
“Ire” is the thing separating doctor from director. Because this curious surgeon wanted a Hollywood close-up instead of the wide angle view of my cranial cephalopod, I endured this alien invasion. Bleeding, bandaged and bitching about the benefits of butchery, I travel home.

A few hours later, the call comes. 

“We’ve scheduled you for surgery.”

“Wait what?”
“The fistula has feeders, like tentacles, which we have to embolize with onyx and then we’ll wait and watch.”
“Watch what?”

“Sometimes the glue migrates.”

I imagine the octopus traveling through my brain, seeking refuge in the gray matter crevices.

The surgery goes as planned.  Three weeks later, the symptoms are back.  Swishing behind the right ear when I sleep.  Chronic narcolepsy.  Elevated blood pressure.  The empathetic surgeon video-calls me. 

“Everything ok?”

“The symptoms are back.”

“Are they better or worse?”

“Better, but back.”

“If they get worse, let me know and we’ll get you back in here.”

“What happens then?”

“It depends.  We may have to perform another surgery.”

I can already hear the joke.  

How many glue sticks does it take to dam a fistula?

Depends how vein you are.

During the day, city sounds mask the incessant swoosh, but after three weeks, it is a midnight concerto.  

“Hey, Doc, I’ve been listening to Beethoven’s fifth for the better part of a fortnight.  Can we get this thing fixed?”

“I’ll put you on the schedule.”

Blood draw, oxygen mask, octopus glue, recovery room.  

“How you feelin, Darlin’?

Southern nurses naturally exhibit congeniality.  The drawl helps heal.
“….”

Anethesia numbs the body and the mind, Thoughts are a jigsaw puzzle mumbled through a motorless mouth.

The nurse’s eyebrows hit the ceiling.

“Oh, shit!” 

So much for congeniality.  Suddenly, I am surrounded by a team of medical personnel. I watch as fear invades my wife’s gaze. The right side of my face has slid down my cranium giving me the look of Dali’s clock in the Persistence of Memory.  At that moment, the doctors are concerned I’ve had a stroke. With no explanation to me, they wheel me to a CT machine.  As my bed rushes toward the scanner, the crisis mode plays out in nurses’ sweat drops moving across the ceiling lights above me, like Perseid meteors come to seek the octopus.  I listen for clues about what is happening.   Critical moments offer no time for words. Facial masks appear above me. Concern hidden beneath cotton.  At this moment, the irony of being in the South strikes me.  The memory will longer, replete with the racism of my white sheets and our journey past the janitor’s quarters.

My cognitive presence is anemic. In this anesthetized state, things move in slow motion and I struggle to keep up.  The phrases shoot out in staccato.

“I got him.”

“Not a stroke.”

“Get another scan.”

“Why is his face like that?”

There is no way to ask what is happening and I have to endure the panic associated with something which occurs in one out of every six-hundred embolism surgeries.  Once again, it looks like I am the anomaly.  

Slide into machine.  

Hold breath.  

Slide out. 

Wait a moment.

The room exhales. 

It’s not a stroke, but rather an unexplainable coincidence.  Did I contract and express Bell’s Palsy ten minutes after brain surgery? Was this swelling on the seventh cranial nerve? Was my neuro-endoscopist channeling Picasso? 

With my lips unable to create a pressure seal on the right side, I cannot articulate anything. Never has there been a better Daffy Duck impression.

“Tho, Doctor, what’th happening to my fathe?”

He ia able to maintain a concerned expression, but when I ask him about it a year later, he remembers the moment and says,’Yea, that wath tough.”

You flavor my day with a touch of spice and a dash of sugar which makes the pain more bearable to deal with.  putting up with my crazy for waking me up in the morning. I appreciate all you do for us, up to and including the laundry, cleaning ,helping me in the bath. Spoiling me with my favorite gourmet meals and the best reverse chocolate chip cookies I've ever had. They are so addictive, our family calls them crack cookies.

 dearest love, I am grateful for you and your love during this trying time of my rehabilitation. Love you to mars and back,

michelle

Dear Emily,

My book buddy, thank you for helping me discover different books and renew my love of reading. Had we not started talking about books in therapy, I don't know that I'd still be listening to recorded books  right now. The talking has helped get my voice back or so my friends have told me. Occupational therapy with you has been fun and learning to do normal things like put my hair in a ponytail button my shirt, putting on my pants much easier. Working with you was always so much fun. I will miss it terribly.  It has been my pleasure working with you.

Thank you note. Lind 

Dear Lindsay,  I missed it until I started the class last February. During my intake interview I mentioned my love of reading and writing something I had not done in a very long time. You picked up on my desire to write and introduced me to the brain injury association of sc. You got in touch with them on my behalf. Sent Paul an email and we connected with them. I have found a community which I identify with wholeheartedly. I truly appreciate the intro and I thank you very much.

Taking a long swim in the ocean spending time under water in the quiet space allows me the time to breathe. It's very similar to yoga breaths which is what I do now. Meditation helps me realign my mind and body. Since my stroke I don't swim in the ocean or pool. My left side is paralyzed so I don't see being back in the water ever again. Holding breath in counting to six. Letting it out counting to six helps center myself. The only difference is I'm on land not in the water. Missing the water is the hard part. One of the reasons we moved to the upstate was to experience living in the country and away from the ocean.

A. Always stay positive

B. Be careful to keep the negative thoughts away 

C.Self care is important. Take time daily to take a shower.ask for help if you need it.

D. Do not ignore your feelings good bad or indifferent

E. Exercise your mind