Alive... For A Reason: What You Don't Know Could Kill You and it's Not the Pandemic: Julia's Story

By Jaiden Jackson Smith

She Almost Died...
In the ordinary life of Julia, a hidden danger looms, threatening to unravel everything she holds dear. Unbeknownst to her, an insidious blood disorder, affecting her brain, poised to strike without warning.
Prepare for a heart-stopping journey as "Alive For A Reason" ... unfolds, a mesmerizing story that will grip you from the first page. When fate intervenes, a courageous coworker's timely discovery becomes a lifeline, unleashing a race against time to save Julia's life.
This compelling memoir is a testament to the resilience of the human spirit, taking you on an unforgettable odyssey of survival, hope, and redemption. As Julia fights for her life, you emotionally cling to every word as if your own breath depends on it.
Unveiling the fragility of life, "Alive For A Reason" ... is an electrifying reminder that what you don't know could kill you, and it's not the pandemic. With each turn of the page, you'll be drawn deeper into Julia's extraordinary story – that will leave you breathless, and your heart pounding with anticipation.
Don't miss this opportunity to experience "Alive For A Reason," her debut memoir that will leave an indelible mark on your soul. Embrace the power of survival, the discovery of inner strength, and hold on tight– as you embark on an unforgettable journey of Julia's story.

• Language: English
• Publisher: XinXii
• Release date: Nov 16, 2023
• ISBN: 9798986631011

Book preview

Acknowledgements

I give honor and praise to God for allowing me to continue living so I could carry out His divine purpose for my life.

I appreciate my hematologist, Dr. Tan, whose knowledge and expertise supported my improved health. Thanks also to his colleague, Dr. Holderness. They ensured the best quality of care for me.

I want to give a shout-out to Dr. Johnston for recognizing that I needed a specialist after the first medical interventions didn't work.

I acknowledge all the hospital physicians, nurses, assistants, therapists, and volunteers for the excellent care they gave me during my fifty-two-day in-patient stay.

My earnest recognition to the people who donated their plasma to the Plasmapheresis and chemo care specialists who performed specialized skills that supported my circulatory and immune system to function as it should.

I appreciate the entire body of staff and volunteers at Mercy and Hope hospital campuses for their care and kindness.

Donna, Ted, and Sierra put their professional lives and personal activities on hold for me. They were the first to answer God's prompting to rescue me in the proverbial nick of time. Each of them ensured my protection, gave reassurance, and never left me alone when I was in the haze of a medical quagmire about which none of us had ever heard. Each of them extended themselves significantly beyond the call of what's needed from friends and colleagues. My appreciation and prayers for their blessings will always be in my heart.

I am grateful to my cousins Ricky and Irene McGee and Freda Jackson, who called me long distances to pray for me after my discharge home. I pray for blessings for Dee,

Giselle, Eve, Lynne, Kevin, and his wife, Bérianne, all of whom supported me upon my return home following my nail-biting fifty-two-day, in-patient hospital stay.

Honorable Mentions:

Former Chief Operating Officer Benjamin Garner allowed his finest and most dependable staff to conduct in-person wellness checks, which began with the critical crisis of the sudden onset of illness. My heartfelt gratitude to Cheyenne, who came to the hospital to braid my hair because I could not lift my arms to comb it.

To the people who shared their experience of TTP on YouTube so others could learn about this rare disorder: I admire your strength and courage to share your stories with the world.

Much appreciation goes to author Jaiden Jackson Smith for writing on my behalf and making it an immersive experience; to editor Greg Cannioto; proofreader, David J. Fabiano; front book cover designer, Anastasia Sukhorebraya; front page silhouette by Kathy Gold/ Can Stock; back cover and interior page layout, Rob Reid, and Team QSMReid; web page format, and design by Justin Chamereun; website images artistically identified by dbdonovan.

These contributors grasped the essence of the changing scenes of my emotionally charged epic episode from a chapter of my life.

Julia Smith

Preface

This book is a comprehensive work of creative nonfiction. It is a constellation of medicinal, spiritual, psychological, inspirational, and paranormal elements. It is Julia's story based upon a foundation of scripture-based themes that introduce and summarize her journey from near-death to living in a new normal — before the COVID pandemic struck.

A rare, unheard-of blood disorder strikes many people around the globe. It causes a rapid decline in mental faculties and can damage vital organs.

What is it? It's an autoimmune blood disorder called Thrombotic Thrombocytopenic Purpura (TTP).

Why have few people ever heard of it? Because it's not among the familiar autoimmune disorders.

What can happen? Victims suffer vital organ damage and fight a 90% chance of dying.

How do I know? Because it happened to Julia.

Who's at risk? Women. Men. People of color. More frequently, women of African descent. Young children. Pregnant women and sometimes, hard-core drug addicts. I address the acquired and adult form of TTP, as Julia is an adult woman of color and of African descent. Besides the disintegration of blood components, researchers and scientists have the opinion that chronic stress and anxiety can be a prelude to TTP and other autoimmune disorders. This disorder can happen worldwide — to anyone.

How can you learn more information about this disorder? Read this book. It's written in a conversational style and chronicles how TTP changed Julia's life. You'll learn from the research how mental health can start a life-changing disease onset. You'll have a sense of the emotions sparked by her conversations with her hematologist and the three friends who heroically saved her. Each of them had a part in keeping her alive — according to a destiny designed by God.

The book has three distinct parts that narrate her determination to beat this illness. You will travel with her from the start of the disease to coming to grips with having to look at her life through her out-of-body experiences, dreams, visions, and being struck with the powerful message: "You will live. Tell all the story about this blood disorder; do not return to work or you will die." She says God imparted the messages to her spirit.

How is it treated? There are lifesaving treatments that enhance the 10% chance of surviving. There is a plethora of listed resources, references; the names of support groups that help victims and their loved ones understand their battle included at the end of the book. This information can help families and concerned individuals attempt to understand this rare, and often deadly disorder. People who have fallen prey to this disease can beat TTP. Victims don't have to die!

Jaiden Jackson Smith, Henderson NV

Introduction: In Julia's Words

When I was in the hospital looking in the mirror at the Intravenous tubes (I.V.) or vas caths–as the nurses referred to them, on each side of my neck. Not only did I not understand how the blood disorder occurred but scared of the unknown and whether I'd survive. It's of significant importance for me to write this book. I want to affirm to the people who survive an uncommon disease — and, in my case — like a lightning strike, a rare, near fatal, blood-related disorder.

I didn't realize I was sick. If a physician had not at once diagnosed and treated me, I would have died.

I hope survivors of any extraordinary condition can feel relieved by knowing they are not alone. This text spotlights the strange, rapid outbreak of a blood disease called… wait for it… Thrombotic Thrombocytopenic Purpura. It took me weeks before I understood how to pronounce it.

The word thrombotic is pronounced (throm-BOT-ik) relates to clots that develop. Thrombocytopenic (throm-bo-ci -toe-PEE-nick) means that a person's blood composition has a lower-than-average volume of platelets in their plasma. Purpura (PURR-purr-ah) refers to purple bruises caused by bleeding under the skin. ¹

It's difficult to pronounce the term in its entire construct. Physicians refer to sickness by its acronym — TTP.

My description is specific to my experience. But it might apply to anyone who has battled a strange and severe sickness. The information is also for people who are simply curious about the human body's mysterious, complex network of its inner workings and how they might not function as they should. Although my focus is on my personal battle with TTP, there are people who have fought a similar fight. Medical professionals and scientists have recorded this uncommon illness in various parts of the world. The frequency of incidences is mind-blowing. One source says 4 out of 100,000 individuals (about the maximum seating of the Los Angeles Memorial Coliseum) in the United States fall prey to this rare complication. Another source shows its diagnosis is at 3-4 in 1 million people (about the population of Delaware) per year. ²

According to the U.S. government site, ClinicalTrials.gov, at the time of this writing, there have been forty-five recorded TTP studies in the United States and in other parts of the world. ³ Among the options to filter records, my search was only for the acquired form of TTP, the synonyms related to TTP, and adult men and women 18 years old and older.

Most studies recorded were for different treatment interventions and pharmaceuticals used to treat TTP in regions where volunteers enrolled, or studies had not begun. The website also gives the status of whether the study was in process, withdrawn or suspended.

It was a surprise to me that there are TTP studies around the world that have at least started if not completed. There are studies recorded in East Asia (Japan), Europe, the Middle East, North America (the United States), Canada, Mexico; and Pacifica (Australia). ⁴

I will not address the disorder during pregnancy or when it occurs while giving birth. I won't discuss the disease in babies and children, sometimes born with what's called the familial or hereditary type TTP. Nor will I discuss its frequency with drug abuse. ⁵ This book is specific to addressing the acquired form of TTP in adults. The reason is because the vast majority of acquired TTP cases have an unknown cause.⁶ Everyone is potentially at risk.

It does, however:

My hematologist explained I had an autoimmune disease caused by a decreased level of platelets in my blood. This happened without warning. These tiny cells in the blood clump together, producing clots in the blood vessels when blood flow needs to stop. The disease was causing this to happen at random, blocking the flow of blood. This activity triggered a fibrous material that damaged my red blood cells — shredding them, causing vital organ damage, and damaging part of my brain.

Chronic stress is often the culprit that can trigger health conditions that can become permanent. Persistent anxiety can trigger a sudden disease onset with no warning signs or physical symptoms.

My goal is to reassure victims that they are not alone when they go through the aftereffects of the yo-yo status of recovering from the illness.

I believe in prayer and faith. Biblical scripture tells us to … call things that are not, as though they are ⁷ (New King James Version Bible, Romans 4:17). I've learned to get into the habit of thanking God for answering prayers before His answers materialize.

I salute the brave and courageous fighters as they go through the steps of conquering their condition. I send blessings to people who supported them emotionally through thick and thin.

Government health agencies have oversight over public and some private sectors. My hope is this material brings a flicker of light to the public about the seriousness of acquired TTP.

I hope my story creates a bridge crossing over from the fear of simply hoping rare diseases and ailments don't occur to being on guard against life's unknowns. Transform the culture of silent suffering by enlightening others of this disease and any other condition or deficiency, physical, mental, or spiritual. Please spread the word.

Stress-related disorders… ⁸

Scientist Hans Selye studied the branch of medicine that relates to the structure, function, and sicknesses of the glands, tissues, and blood. His study included psychological health conditions that result from short- and long-term anxiety. ⁹ He concentrated on the way these conditions affect the body that may cause specific reactions within the individual.¹⁰ He published over 1,700 articles and thirty-nine books on the subject and gained recognition for his findings that he cataloged as stressors. His research gives detail on how stress wears on people. ¹¹ Selye identified them as either a conscious or unconscious personal condition resulting from positive or negative pressure.¹² It's in response to an individual's personal, physiological, psychological, or cultural hurdles. ¹³

Doctor Selye advanced the theory that stress plays a role in illnesses. Not coping with or adapting to life's pressures produces — what he called diseases of adaptation. ¹⁴

Selye focused on physical and emotional stress factors — positive or negative pressure — that can block an individual's coping abilities. Selye found an emotional process started by events threatening, harming, or challenging an individual or exceeding that person's specific ability to manage. It is a mental response directed towards trying to adapt to a situation. ¹⁵

People respond differently to problems. Doctor Selye's termed it, the stress-response. ¹⁶ Doctor Selye stipulated that there are people born with a temperament that may predispose them to higher or reduced levels of tolerance. The renowned scientist concluded, Stress can decrease the immune system and is a reaction to sensitive flare-ups [caused by] a condition of ongoing, never lessening pressure. ¹⁷ According to Selye, These catalysts can stem from physical, physiological, psychological, or sociocultural events. ¹⁸

Selye observed patients who displayed acute symptoms that he attributed to stress. He described it as a pattern with three phases: an alarm first phase followed by a phase of resistance or adaptation and then a last phase of exhaustion that can culminate in death. ¹⁹

Prologue

I am going back to sleep. Judging by the voices, it sounds like my friends are around me. The conversations are about me. Voices … far away. I don't care to listen or figure out what they're talking about.

Whoever these people are, they want me to keep my eyes open.

Who's whispering in my ear? Is something being said about a spinal tap? My insides tremble with fear.

No.

The faraway voice is repeating the question, not satisfied with my answer.

Not again. No.

***

Floating or falling in slow motion, like watching the snow fall on a New York winter day. Then the lightning rush of being taken somewhere. It's like Dorothy in The Wizard of Oz. ²⁰ It's the scene when her house swirls and twists in the atmospheric turbulence.

In an instant, I'm standing behind a partially open door. In a vision, I see a hallway, but it's bathed in a shadow.

My right hand is cradling a sculpted, geometric work of art. An antique. I look around. I'm standing in places and times long gone.

"Trust the past to God's mercy,

The present to God's love,

And the future to

God's providence."

- Saint Augustine

Part One: In the Beginning

The beginning of strife is as when one letteth out water: therefore, leave off contention before it be meddled with ²¹

(Proverbs 17:10 KJV).

Chapter 01: Hello … Is Anyone Home?

Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers ²² (3 John 1:2 NKJV).

W

ho is knocking at the door, hard and loud?

But the sound is coming from the master bathroom. Pounding from the other side of the bedroom wall. And from the bathroom, no less!

Fortune and Treasure aren't barking at this racket? Where are they? There they are. They're at the bottom of my bed on their yellow sheet. Must have been in a deep sleep. Forgot I'm lying nude under the covers. I took a bath. Didn't I?

Did I bathe on Sunday, Monday, or this morning? I remember laying down under my cool sheets to dry.

What day is it, anyway?

There's that hammering like thunder striking again.

Sharp spasms are crippling my every movement. The pain is like broken glass scraping against my spine.

Let's see. On Saturday, an on-call emergency room doctor examined, medicated me, and sent me home the same day with a prescription to ease the deep, penetrating pain. The throbbing has subsided, but it's not gone. Sunday passed. I recall sending a text to Penney to tell her I would not be at work Monday because my back continued to impale me in one position.

Today must be Tuesday. I took a quick bath before getting dressed to go to the office.

Must have relaxed me too much. I remember considering that I'd let my body drip dry under the cozy blankets and close my eyes. The last thing I can recall is being exhausted.

There goes that banging again. And now the sound is coming from downstairs? And with such forcefulness!

Is something catastrophic happening in the neighborhood? Is the person who's knocking trying to tell me to hurry and get out of the house?

But I don't have any clothes on. Gotta cover-up — and quick. Here's Fortune and Treasure's yellow sheet. I can grab that and wrap it around me, but I can't find my slippers.

I race down the carpeted steps, stumbling.

Fortune and Treasure are at my heels. I hear a clanging sound and then a dull thud. It's the glass-framed memories on the mantel of my mother, father, and my furry kids of my younger days, Toie, and Taiyhana—my treasured photos. My prized possessions and pictures hit the carpeted landing.

Nothing's broken. Another series of hammering.

Who is it?! I'm struggling to keep my balance, catch my breath, and run toward the stairs.

No answer. The loud noise stops.

Who could it be at this hour? What time is it, anyway?

Good, I made it and didn't break my neck coming down the staircase. I crack the door open. My fur babies try to see past my body, to sniff the air, to discover who's outside.

It's Donna! Ted is behind her with a police officer and a marshal from the Institute of Justice.

Did I do something wrong? What happened?

Fortune nudges her nose around me. Treasure recognizes Ted and Donna and tries to get close to greet them.

Donna's facial contortion lets me know she's surprised to see me have no clothes on under the sheet. She talks to the people behind her through the partially open door and says to Ted and the uniformed officers, Please give me a minute.

In a flood of sentences, she says,

You didn't call into work. I've been calling and texting all morning. Penney says she hasn't heard from you since the time you texted her about your back Sunday evening. She told me you have a presentation today at 11:00.

I asked her if it was okay that I run and check on you. It's unlike you not to call if you're sick. I called Ted because I assumed he could get here faster than me because he's retired. I couldn't leave the office as soon as I would have liked.

She's searching my eyes, expecting me to speak. What should I say?

Donna repeats herself to make sure that I've understood the complexities of the situation. "You didn't call or text me either, as usual. And that's not like you, Julia."

Donna's waiting for me to respond. I turn and walk toward the recliner in the living room, plopping down with Fortune and Treasure at my side.

Is everything alright in there? someone shouts from outside. The voice doesn't sound like Ted's. Donna tightens the sheet that I had around me.

One minute, please. Donna repeats to the uniformed medical and security officers waiting outside. Fortune nudges Donna's leg with her nose. She reaches for Fortune's pink collar that's around her thick neck and gently leads Fortune to her crate.

Come on Fortune. Fortune allows Donna