Tremor

The world used to be in color. Vibrant, rich hues painted every day — the cerulean sky, the emerald leaves, the fiery sunsets I’d chase with a camera in hand. Now, it’s mostly gray, washed out by a relentless, invisible fire. They call it CRPS, Complex Regional Pain Syndrome, but I call it the thief. It stole my life, my independence, and a piece of my soul I may never get back.

It started after a minor surgery. I brushed it off, chalked it up to normal post-op pain. Then the pain sharpened, twisting into something unrecognizable. It wasn’t just a hurt; it was a screaming inferno that refused to be extinguished. My skin became a live wire — every touch, every breeze, a jolt of agony. My hand, the one that used to deftly wield tools and sketch dreams, swelled and changed color — a monstrous parody of what it once was.

The doctors tried, but the glazed-over eyes, the hushed tones of “rare” and “complex” — they spoke volumes. It felt like I was speaking a foreign language, trying to describe a sunrise to someone who had only ever known perpetual night. How do you explain that your own body has turned against you — that the very nerves designed to protect you are now your torturers?

The hardest part, harder even than the torment itself, is the isolation. Friends, once so close, drifted away. Their initial sympathy gave way to awkward silences, then eventually, nothing at all. “You don’t look sick,” they’d say — a phrase that felt like a punch to the gut. How could I make them see the lightning bolts shooting through my veins, the icy grip that sometimes seizes my limbs, the constant tremor that makes holding a cup a Herculean task? I stopped trying to explain. It was easier to just retreat, to curl up in my own private hell where at least I didn’t have to witness their discomfort or their pity.

I used to be proud. Independent. Self-sufficient. The one everyone came to for help. Now, I’m the one who needs help to open a jar, to button a shirt, sometimes even to just stand. The humiliation is a constant companion, a burning shame that rivals the pain. Asking for help feels like tearing off a piece of my dignity, exposing a raw wound. Begging — even subtly — for understanding or patience is a soul-crushing exercise. I see the flicker of impatience in their eyes, the subtle shift in their posture, and I know they don’t get it. They can’t.

Sleep is a fleeting whisper, a brief reprieve before the flames rekindle. The nights are long and lonely, filled with the echo of my own cries and the terrifying realization that this might be my forever. There are moments — dark moments — when the sheer weight of it all threatens to crush me entirely. The relentless pain, the crushing loneliness, the constant battle to simply exist.

And sometimes, more than anything, I just want to close my eyes and dissolve into the quiet abyss.

A First-Person Account of Auditory Static, Cultural Codes, and Rewiring My Neurodivergent Mind

1. The Paradox of Perfect Hearing

My ears are medically flawless. But when you speak, your words often dissolve into static. I’ll ask you to repeat yourself, and seconds later, the sentence snaps into focus. This isn’t a hearing problem—it’s auditory processing disorder (APD), a neurological quirk where my brain struggles to prioritize speech over background noise.

Neurotypical brains filter out irrelevant sounds instinctively—a survival skill honed to track predators or allies. My brain treats all noise equally: your voice, a ticking clock, the buzz of fluorescent lights. In gatherings, this means cognitive overload. But in quiet spaces, it sharpens my ability to detect tonal shifts others miss. A tremor in your voice, a pause a millisecond too long—these are my subtitles.

2. Proverbs vs. Precision: A Cultural Minefield

In Botswana, communication thrives on indirectness. Setswana proverbs like “Mabogo dinku a thebana” (“Sheep’s hands are siblings”) are social currency. To my autistic brain growing up, they felt like riddles without answers.

Growing up, I memorized laughter instead of meanings. I nodded when others nodded, scripting reactions like an actor with a bad script. But at home, I dissected books and films, reverse-engineering social rules. Matilda taught me when to smile. Pride and Prejudice taught me sarcasm. Real life? That was advanced mathematics.

My literalism wasn’t ignorance—it was hyperfocus on clarity. While others danced around metaphors, I demanded: “What does this mean literally?”

3. The Unmasking Equation

For years, I was a “good girl”—polite, rule-bound, hyperverbal. By 26, the mask cracked. Burnout isn’t laziness; it’s neurological debt.

Mimicking social cues drained my prefrontal cortex, a region neurotypicals automate. Every smile, every nod, was a manual override. Quitting my job wasn’t defeat—it was recalibration. I stopped forcing eye contact, let myself stim (sucking my tongue, humming), and prioritized sensory needs over social expectations.

Psychologist Devon Price calls masking “social survival with a body count.” For me, unmasking was liberation.

4. Sensory Revolt: My Body’s Audit

Unmasking unearthed suppressed sensitivities:

Crunch = Calm: Slimy foods (like okra) trigger gag reflexes. Crunchy veggies (carrots, apples) ground me. Science calls it “proprioceptive input.” I call it lunch.

Touch Boundaries: Hugs feel like invasions unless I initiate them. A weighted blanket? That’s 15 pounds of safety.

Pain Paradox: I pulled out a chunk of my hair once, whilst playing with it and felt no pain, but I recoil from a light touch. My nerves aren’t broken—they’re overclocked.

5. The Neurodivergent Advantage

Autism isn’t a flaw—it’s a cognitive specialization.

Hyperfocus: I dissected social interactions like lab experiments, memorizing scripts faster than others learned small talk.

Honesty as Innovation: Rejecting proverbs forced others to clarify. This became a superpower.

Pattern Recognition: Spotting hypocrisy in inconsistent rules? Easy.

Gladwell’s David and Goliath argues “disadvantages” can be strengths. My brain proves it.

Rewiring “Normal”

I don’t need fixing. The world needs updating.

Captions, sensory-safe spaces, and written instructions aren’t charity—they’re ROI.

“Normal” is a setting. My brain is on manual.

By SKL.

No metaphors. No fiction. Just my truth.

Hello from keepfngoing2025.I was diagnosed with Parkinson's, in 2018, at the age of 52. To say we were shocked is an understatement. The journey is not easy. Every day is a challenge. Through blogging, cohosting a podcast, and developing a mentoring program for the newly diagnosed, I realize that I have a voice.

My goal is to help those struggling following their diagnosis. My blog www.keepfngoing.com chronicles my journey with moments that inspire laughter and joy to those that evoke deep reflection and sadness. The blog is not just a collection of thoughts; it is an unfiltered, raw reflection of my personal journey living with Parkinson's.

Also, I am a 34-year public relations' veteran, now retired, yet would love to offer content andf my perspective on everything from what happens the minute you walk out of the doctor's office to ensuring that people understand that Parkinson's is more than a tremor.

Let's chat.

#MightyTogether

This poem appears in my poetry collection The Spiral's Edge, a book inspired by life as a special education teacher and father navigating mental health, Students/ adults withspecial needs, and love. May you find meaning and connection

www.amazon.com/Spirals-Edge-Michael-Boss/dp/1966196199/ref=sr_1_1

The Spectrum Speaks

The world pulses in frequencies I cannot always decode—

a symphony of sounds cascading like water over stone.

I grasp the meaning, but it dissipates like mist, a melody

fading before it lands.

Your face is an ever-changing puzzle. Its edges are elusive,

and it comprises pieces that refuse to fit.

Your emotions drift like clouds, patterns I can't always read.

Not from indifference but because my mind constructs a

language foreign to you.

Please do not mistake my quiet for absence or my stillness for

peace.

Sometimes, the lights carve too sharp and sounds pierce the

air, pressing the atmosphere inward, tightening its hold.

My body curls into itself—a refuge against the storm.

When everything collides at once, I cling to consistency,

routes mapped through chaos, paths etched in the flood.

What you call "rigid," I call survival.

When structure falters, I retreat inward into a world I can

shape. Daydreams build my sanctuary

where thoughts craft companions who demand nothing in

return.

I drift—not to escape, but to steady myself in the whirlwind of

existence.

While you read emotions at a glance, I study the unnoticed—

the way light catches a thread, the subtle tremor of a hand. I

see the world differently but no less vividly.

Yes, I carry storms, their energy spilling over.

Yes, my resting mind does not rest like yours—its fires never

genuinely dim.

But even in this, there is meaning.---There is me.

Please do not teach me to think like you, move like you, or

fold me into your world's shape.

What if the world bent, just a little, to hold my shape instead?

I stand unbroken; I am a variation of the infinite— a different

star in the same vast sky;

My light is valid, and my orbit is actual.

The hallmark of a society is not its ability to correct but its

I would be willing to include.

Please do not pity me.

See me.

I am here—

-Nearly four years after the first cases of an unusual pneumonia appeared in Wuhan in December 2019, nearly 7 million people have lost their lives due to covid, and some 65 million more continue to struggle with the infection’s mystery aftermath, a poorly understood syndrome known as long covid

- Dr. Jamie explains that covid is now labeled by health professionals as an autoimmune-inducing virus, along with Epstein barr and herpes type 6.

-The National Institute Of Health performed autopsies on more than 44 persons who died from COVID-19 and it was shown that these people not only had COVID-19 in their airways but all throughout their bodies. The samples revealed COVID-19 in almost every organ and organ system of their bodies, including their skin, eyes, stomachs, muscle, fat, glands, and even in six different parts of their brains. These details and reports are a key indicator of how COVID is not simply a respiratory disease, but rather it can affect all the inner creases and crevices of every muscle group.

-The insufficient awareness and understanding of long covid, both within the medical community and among the general public, pose many significant challenges for individuals experiencing persistent symptoms after contracting covid. Many people suffering from long covid told their stories in a buzzfeed article, and some of them left me shocked. A notable case was a 48 year old female named Heidi Farner, who caught an asymptomatic case of covid, and weeks later she developed a parkinson like hand tremor. This hand tremor went on and greatly affected her ability to sleep. Her symptoms were pushed aside and she was denied a diagnosis by doctors time and time again. It was noted that she told her husband things would never get better, and no one will listen, and she ended up taking her own life after a 13-month battle with long covid.

-Covid itself changes basically the entire makeup of your cells, ranging from cells in your esophagus, to your intestines to your skin. This can cause detrimental and long term damage that cannot be easily reversed.

Three words that's all it took, three. And truth is they keep changing:
I am sorry
I am sorry for the sounds, that continue to disrupt your afternoon. I am sorry for the screams you may hear when I'm locked into a spasm. I am sorry for the grimace, it's not you, I swear. For my arm locking up, or outrageously moving from a tremor. And now it's become almost a ritual at this point, half-way through a grocery run I can feel my body do a jig with the cart. All the while lying point blank to my husband that I am fine. He sees the stressors, he knows I'm lying. But I hate that walk back, that feeling of defeat as I Igor-walk back out to the car. It's a wierd feeling of complete vulnerability of feeling like I arrived at school naked. And all I can see are people watching this wierd act of what once was an artist, a poet, a novelist. Well, I know they aren't really looking. And that I probably don't take up a miniscule of brain matter. But that anxiety is present all the time, everyday. Maybe I'm a narcissist.

I am sorry for that annoying scrape sound you might hear. That sound of shoe (or in my case slipper, cause sneakers can't easily slide) rubbing the asphalt of the parking lot. I promise, I hate it just as much as you do. It is the strangest feeling and extremely sobering to witness your self-decline. And since this has started I have slowly felt myself dwindle. The self I spent thirty-six years working on. What I once knew so well, completely altered and all I can do is watch/feel it happen. I am sorry for the bags under my eyes. I don't sleep through most nights. Something is always waking me up. Sometimes I will let the weight of my eyelids win and the sleep will fall over me like confetti or glitter. Sometimes I let the sleep win.

I feel guilty:
Three words that's all it took, I feel guilty for making my husband have to take so many extra steps just to meet me halfway. I feel guilty for tricking him, I am so different from when we first met. It's all been different since the symptoms started showing. But no matter when or where I am the soft assurance of his voice has never changed. He is continuously in my corner, fighting for me. I feel guilty for making my family worry, for getting angry at my mom because she refuses to believe. I can't blame her for pushing it to be something else, I'm her daughter. I feel guilty for causing my beautiful niece to hesitate in my presence. For exposing her to a spasm or tremor or an uncontrollable facial tic. I don't ever want to frighten or scare her.

I feel guilty for not taking advantage prior to this diagnosis. For not enjoying the smaller things as much. A good night of sleep, a walk, exercise, for when it came easier. There are so many other words I could use to describe this event, to describe the depression and confusion. But I'll use just three more right now:

I have Parkinson's.

#BipolarDepression #MentalHealth

Today I counted 101 distinct PTSD tremors before 9am (My personal best to date was 115). On tremor 101 I prayed to him to make it stop and I think he heard me. I'm now ready to face the day.#PTSD

Since the beginning of this year I‘ve faced so many challenges, non-stop, I just cannot deal with any more. I’ve reached my mental, emotional, and physical limit, and tomorrow I’m going to postpone a scheduled procedure for a few more months (colonoscopy) because I just need a break! It will be the 3rd test for cancer I’m having since January and I still am waiting on results from the first 2 separate ones!
I just had 3 mammograms and a 6-punch biopsy. A vein was inadvertently hit, and I am entirely deeply black & blue, and in pain. 2 weeks for results. Long story of misdiagnosis, but I’m finally seeing the correct doctor to determine whether lesions on both sides of my head are cancer as my GP diagnosed. I saw a prominent movement neurologist who said I did NOT have Parkinson’s, (Yay!! Yay!!) but severe Essential Tremor which only focused ultrasound treatments to my brain or microchip implants might help diminish the tremor. (I am not independently wealthy or so inclined.)
But in addition to all the physical stuff is the termination of my relationship with my eldest daughter-she’ll be 45 soon. I just absolutely cannot “reach” her anymore.
My first daughter who I have always cherished & enjoyed began having problems in her teens, especially following my divorce in an acute domestic violence situation where I was forced to take my children & pets and give up their only home because my ex- refused to leave, and he was hurting us all. I found a great fixer-upper right across from the high school, transformed it, always had a houseful of kids, worked hard and had a happy life. Both kids were honor students and active in clubs & sports. Until my eldest dropped her good stand-by friends and began hanging out with troubled kids from other schools, and acting out. Their father’s abuse never ended, but he targeted our eldest and adamantly refused the counseling for her she so desperately needed & deserved. She turned from a sweet, bright, funny talented youngster into a rage filled, viscous, self-sabotaging bully exactly like her father. And has maintained that personality toward all her family since, blaming each of us for her unhappiness and health problems, and being unrelenting, escalating abusive, continually speaking outrageous lies and manipulative accusations that leaves her sibling and I aghast as she’s got increasingly worse over the past 10 years.
Her sibling got married, has a beautiful family, and always tried to include her sister, even’tho she was always abused & shunned. Her sister got counseling, and no longer allows the eldest into her life, although they have met several times at relatives for the children’s sake.
My eldest lives 3-4 hours drive from me. I would do look forward to her coming to visit years ago until she became very belligerent over absolutely nothing, began deliberately provoking “fights” I NEVER wanted to have any part in, objected to anything I said or asked, and got herself so angry & worked-up that she’d leave yelling, screaming, & cursing me at the top of her lungs! I live in a very quiet senior building and I did everything I knew to de-escalate the situation, each time, to no avail. The final visit, a few years ago at Thanksgiving, she suddenly lunged at me from across the living room fists raised, teeth clenched, maniacal eyes…got right up in my face, then backed off. I can never feel safe with her again. I did have a few sessions with the counselors at the local Domestic Violence Center.
So she’s continued this degrading abuse via phone calls over the past several years, blaming me for everything her father did to her, and it’s just broken my heart to hear all her bizarre, hateful, untrue name-calling and bullying. She is “in therapy” with someone online whose credentials are clearly from Walmarts 101, and who has no philosophy whatsoever other than “everything is your parents fault & there’s nothing you can do about it, so rage away making yourself sick, suffering, & staying stuck!” I can’t take any more of her endless incredible hatred. I loved that child and woman with my entire heart her whole life through thick and thin, protected her, encouraged & cheered her on, looked after her when other parents might not have bothered, had fun together…never laid a hand on her. I am gentle and reasonable with discipline that teaches consequences.
But the stress of her calls, constant demeaning without cause, is too much stress for way too long. My glucose levels skyrocket for days from the cortisol and totally mess up my diabetes & blood pressure. I just had a major Arrhythmia episode. I’m having to deal with depression & anxiety & ptsd whereas I’d reached a level of contentment and peace and pain management. She’s slammed the phone down on me once too often. I finally agreed with one of her many threats and while I said I always have and always will love her with my whole heart and soul, I will no longer tolerate her abuse in any form. No more calls or texts…until or unless she can find it in her heart to relate to me with some respect and civility. She then texted me a photo of her and a bunch of friends smiling, laughing, and said “See mom! I’m HAPPY without you! I’m having a great life without you in it!” I had a stillborn baby birth in between these two kids who I mourned over for a long time. I’m going through a great mourning now for my beloved firstborn- we’ve been thru so much together. But I feel a great sense of relief and calm is returning just these past 2 weeks and I know we’re both going to be ok. I’ve prayed for her every day and I’ll never stop. I miss who she was. A huge part of my heart and life is missing.
I’m hopeful about all my test outcomes, too. I threw my own theory into the mix. Instead of 4 or 5 specialists sending me for endless invasive tests, I’ve proposed that all my symptoms are attributable to an allergic reaction to a specific medication I started 10 years ago. I got 2 doctors to agree, so I stopped it last week and now we wait and see! Who knows? Meanwhile, should I just get the d€¥m colonoscopy over with now? Or give myself a couple months break?😵‍💫

#ChronicFatigue I #ChronicPain

My Grandfather was born in New Brunswick Canada in 1924 of Irish/Scottish/English heritage. He will turn 100 years old in November.
My Grandfather is the sweetest man I have ever known. Selfless, giving, caring of others…a gentle and quiet spirit.
I saw him yesterday at his retirement home. He lived with us until the age of 97 and was in decent health…although he has had basal cell carcinoma on his head and nose from the year I was born (for 35 years.)
A bout of pancreatitis sent him to the hospital and his health (and mind) rapidly declined in 2022.
Now, he is bedridden and almost deaf…his skin cancer has become severe and he seems to have dementia although he has not been diagnosed.
I wouldn’t wish this on my worst enemy, being 100 is not the pretty picture you see in the news. It’s ugly and sad…and if I think too long on it I get depressed because this fate has come to the most honourable of men. My Papa did not deserve this.

Let me tell you who he used to be:
A young man married with 2 children. The eldest a boy and a girl (who is my Mom.) He worked as a repairman at GM and stayed there 30 odd years retiring early due to his wife’s health. My Nana had Addison’s disease since her 30’s.
During all of this he diligently served his local Adventist Church as head elder for many years.
His hobbies included leather work/stained glass and gardening. Despite the fact that he suffered from digital tremor for much of his senior life.
He was the male influence in my life as my own father was largely absent. Even to this day in his confused state he tells my Mom that his “daughter” came to visit…while asking me who my Mom is. He has never once seen my face and not known me…

I love my Papa! If sanctification can be seen completed in the character of a human being it would be seen in him. The lovely character of Christ still shines even through all of his pain and all the deaths of loved ones including his own son…in his confusion he is as sweet and as polite as he’s always been. Never a vulgar or harsh word spoken.
He was and is my inspiration to continue in the faith…no we are never perfect in this life but we can try our hardest to live a good Christian one.

I wrote this because I don’t want the world to forget my Papa. Yes, he was/is your ordinary hard working man…but he was/is extraordinary to me.