What began as an interest in sharing Dana's story, quickly morphed into a more epic and in-depth blog piece(s) covering her story and the healthcare system we live in. It’s difficult talking about medical cases without sharing how and why the system is the way it is and how it strangles the sick. It's a LONG read, divided among a couple posts andit took me an incredible amount of time to put together so I encourage you to read and reflect when you have time, and maybe even share.

Last year I met Dana online through her curated Instagram art page “She Walks Softly”. Her page is filled with art she finds interesting — from the surreal to macabre-inspired art. This Instagram community has been Dana's life source, her encouragement, voice, connection and only window to the outside world.

Since, I'm a curious researcher I looked closer at Dana's art page and discovered who the curator was and what she was going through. One has to look close to know anything about Dana because she rarely talks about her life or the daily hell that permeates her New York home; hell that has saddled her life for years. On rare occasion she shares a picture of herself among her wall of tiled photos of art she admires and cracks a window into her life and health. 

Dana, like me, is 40. 

Dana has long platinum blonde hair. The few pictures of herself depict her smiling with perfect makeup, making it hard for any casual observer to perceive how profoundly sick she is. She puts makeup on to forget her reality and also because physically she still can but soon won't be able to. But behind the made-up face is a life so hard to imagine even for someone like me who experiences a very rare muscle wasting disorder that is taking me to quadriplegia and a mysterious list of chronic symptoms that impede my daily life. 

Dana has an exceptionally rare story consumed by multiple remarkably rare mutations and perplexing chronic illness that has left her house-bound for EIGHT years. Her health is so bad she can't even step outside to visit the doctors and hasn't been able to have visitors or phone calls for years.

In the confines of her walls her world is exceedingly small, greatly contradicting who she is as a person. 

Since childhood, Dana's health has been increasingly alarming. Her symptoms for decades eluded diagnosis until they became so severe she was bedridden due to delirium-inducing pain that began 12 years ago.

By age 28 her mysterious growing condition virtually incapacitated her. 

For 13 years Dana was denied by the medical world and told her avalanche of debilitating symptoms was fibromyalgia; a blanket diagnosis I’ve noticed is given when doctors don’t have the answers (I'm not saying this is the case for all those diagnosed with fibromyalgia).

In 2016 Dana's health started declining rapidly and she became allergic to almost everything in her environment, including most all foods. She was unable to eat for all of 2016 and ravaged by obscene joint pain, nearly losing her ability to walk and use her hands. 

Her list of symptoms were so long they filled four single-spaced pages. Her body was breaking down. 

After half a lifetime of unremitting pain, going blind and upwards of 100 doctors, some of the best out there, she was finally diagnosed at age 39.

It was then she discovered she had been living in black mold infestation for 35 years AND one of few with multiple genetic defects (HLA, MTHFR). These two mutations make it impossible for her body to detox or even recognize mold, lyme and other bio-toxins, or the hundreds of thousands of artificial chemicals in our products and environment that you and I don't experience reactions to. These numerous toxicities were causing unstoppable inflammation and her system began failing.

Dana's gene mutation is so rare that the medical world has no name for it, nor has studied it, but it causes some of the worst pain syndromes known to man. Her mutation locks pain signals to “on” every minute of every day and increases indefinitely. The pain is so severe she can barely talk, chew, move or type. Her doctors said they have never seen wide-spread pain like this.

Many with this kind of extreme chronic pain commit suicide. 

In addition, Dana has those two genetic mutations that don't allow her body to detox mold and lyme disease PLUS two mutations that cause mitochondrial depletion/damage, making it impossible to produce muscle energy. This muscle depletion mutation has made her nearly blind from weak eyes. Due to the pain and muscle weakness Dana is unable to speak and slowly suffocating from muscle respiratory failure. Her jaw is nearly swelled shut from intractable pain and inflammation of the masseter muscle. All these mutations are constantly triggering each other with no treatment or relief in sight.

Today, she can barely walk and is quickly approaching a permanent wheelchair state. As a lover of arts and crafts, potent neuropathy has left her near unable to use her hands, even for simple tasks like typing.

What people don't realize is if you have a condition that goes unmonitored or untreated for years, the condition grows and mutations start triggering each other until you're in a never-ending hamster wheel of unrelenting chronic symptoms.

For Dana it took respiratory muscle failure for anyone to finally take her seriously.

Dana had physical traits of genetic mitochondrial or neuromuscular disease for years and confronted doctor after doctor but they shrugged her off, reducing her to a crazy hypochondriac. It was only in 2018 that a doctor would finally perform genetic tests and genome sequencing (not covered by insurance and very expensive) that led to diagnoses.

Had doctors listened to her requests for genetic testing, today could be different.

For 24 years Dana was blamed, ignored and invalidated and none of those who turned her away are suffering for it. Today, she is down to less than 20% of respiratory function and is “artificially” kept alive by machines; a life-saving ventilator insurance tried to take from her. Despite only having 20% respiratory function some insurance person who has never met Dana got to decide she is no longer allowed to breathe and her ventilator was suddenly denied. For months Dana had to fight insurance in one of the worst medically declining states I've ever heard of. She is fighting for her life every second, yet forced to spend copious amounts of time she doesn't have to deal with the rich bureaucracy we call a healthcare system. 

Due to the mold exposure, Dana was soon directed by doctors to move, buy an industrial strength HEPA vacuum, and throw away all her possessions, including those of sentimental value. She had to replace everything from furniture, clothing and household products. As a sentimental collector who saved EVERY letter, family heirloom, artwork, handmade projects, journals and gifts, she had to abandon every artifact from her life, like they meant nothing. Like they never had a space in time. Her past is only accessible through memories but that is also fading due to brain fog derived from all the chronic pain and symptoms.

Dana also had to undergo extensive mold remediation and testing of her new home (that also tested positive for mold) racking up $40,000 in costs on top of a pile of obscene medical bills for things like detoxification program and pertinent genetic medicines which are not covered by ANY insurance.

This is financially impossible for most healthy, upper middle class so imagine facing these catastrophic and financially crippling expenses when you have been bed-bound and too sick to work for years. 

Dana's medical expenses have near bankrupted her, her father and husband. This is the reality for so many in America, the richest country in the world. 

Imagine being on death's door and forced to fight for your life from those who are supposed to help the sick. Imagine your child or spouse is dying and their life is in the hands of corrupt private insurance and the medical field who do their best to overlook your loved one.

So many don’t have the luxury to imagine because they live this very day.

* * *

There are no good or bad days for Dana, just steady worsening. Each year is worse than the previous and she doesn’t have the luxury of knowing if she has a chance at life or is being escorted to death.

The daily vomit-inducing pain is so intense she can't even laugh. Her jaw, neck, torso and shoulders experience the most grueling spasms from struggling to breathe. Today, Dana is bed-bound, largely unable to verbally communicate and going blind. She reserves what few words she can muster for her husband who is a research medical scientist but she really hasn't been able to talk to a soul for years, including friends and family.

On her absolute worst days, when she literally feels like she is dying, she has to debate whether she should call the paramedics or not because one, the physical pain involved in being taken to the hospital is off the charts and, two, hospitals and medical professionals rarely, if ever, can help her.

She is an enigma to every doctor who meets her.

Despite attempts to treat her advanced lyme disease and mold exposure, Dana has been on a fast decline. While others can recover from Lyme disease and mold exposure, her unfortunate genetic lottery in a series of defects have made her unable to tolerate the condition and most all kinds of treatment, including pain killers and CBD/marijuana. 

Because her mutations are so rare most doctors use this rarity as an excuse to try nothing. Dana always knows more about her condition than all the doctors out there and has spent her life educating the medical field. But last year, in state of constant research for a glimmer of hope, she came across a youtube video of a medical savant who graduated college at age seven. Yes, seven. This doctor is the rare one who has agreed to take on Dana's case. For the last few months she has been undergoing experimental and very expensive stem cell therapy but not without many difficulties, pain, setbacks, frustration and violent physical effects.

But this is her last resort. This is her last hope.

While Dana’s body is in constant trauma and torture, she finds strength in small things. She cherishes every second as she navigates this nightmare no human should endure. She dreams of counseling, educating and advocating for others like her. She has the articulation, talent, intelligence and sensitivity to make a real difference except her seconds are consumed with trying to stay alive and wondering if it's tomorrow she will die. 

To cope Dana has created her own world to distract herself from the pain and symptoms by indulging in books, film, research and art. This has somewhat filled the void caused by being locked away from the world for eight years. She believed her mind was her solace and uses that and curiosity to find the silver lining; to feed her insatiable appetite for knowledge.

I use these same survival tactics to combat the loss of my body.

But her physical trauma is so severe she has lost much of her memory and cognitive function so it is significantly more difficult to indulge in her favorite distractions like reading and research.

Dana and I text but in a VERY reserved state so she can ration her eyes and avoid the physical punishment often derived from doing anything like watching TV, reading, speaking or breathing. We are very similar with many of the same interests. We are both in a constant effervescent curious state. We are both creators and seekers on a constant hunt to learn and grow, with too many overflowing interests to fit the time we have left.

I think a lot about Dana. I've never met her but I have love and concern for her. I wish I could help. I wish I could do something. I feel helpless and it pains me to know the days of someone who is so capable are reduced to trying to breathe and staying alive. It hurts to intimately know, to some degree, what she goes through and the daily thoughts that must permeate her mind as they do mine.

Dana is still grasping onto fleeting hope, but that hope is becoming more and more diffused as she fights for her life.

Her biggest fear is dying before telling her story.

I wanted to share Dana's story because it is important. The healthy world doesn’t understand what can happen to the human body without our doing or consent. I have my own history of enduring arduous years of diagnosis search for my genetic muscle disorder and now chronic illness so I have some reference from my own experience but words could never explain what Dana truly is going through.

I understand how constant loss works and can't explain how frustrating it is to suddenly face an illness or severe disability with no answers. 

You feel caged, surrounded by deep and utterly dark loneliness.

Those who experience mysterious and often complex disorders usually suffer disbelief from the medical world, family and friends because chronic illnesses are invisible. This is the sixth bullet in the chamber as disbelief only heightens the savagery of these chronic conditions.

There are unusual conditions being discovered all the time.

I mentioned Dana became allergic to everything around her due to genetic mutations. Conditions like this exist. Conditions like Multiple chemical sensitivity (MCS) exist which basically means you're allergic to life.

Can you imagine having a condition like MCS yet you are unable to escape the triggers that live all around us?

Tap water can have metals, mold, toxins and chemicals most of us are designed to filter, but for some the toxic environment we live in can trigger mutations and conditions like MCS.

You can even become electrically sensitive if your cells are poisoned by (usually) mold or something else that damages the membranes. And thirty percent of people who are chemically sensitive could develop electrical sensitivity which means they can’t be near wi-fi or any modern electrical technology.

In 2016, the US National Toxicology program found that rats exposed to radio frequency radiation were more prone to tumors.

There are always roots to why something is happening but the search is often left up to patients.

Unexplainable neurological symptoms can occur from simple origins like sleep apnea, unknown exposure to gas leak or arsenic wallpaper from 1874, so to be told by a medical professional there is nothing wrong and/or they aren’t going to seriously investigate the origins of many symptoms is devastating and huge injustice to those who are sick.

I experienced this so many times in my diagnosis search.

Imagine how ancient society viewed medical issues they didn't understand. People from Salem witch trial days, and before, attributed unexplained or strange medical phenomena by saying it was the work of witchcraft or devil. Conditions like epilepsy, mental illness, ergot poisoning and encephalitis lethargica were explained as “dark arts” and thus the person must be eradicated.

Your brain can exhibit unusual modes like “depersonalization” which is when a person sees their loved ones as something else, like a robot. It sounds weird but not if you understand other conditions like Oliver Sacks' patient who had visual agnosia and couldn't recognize his wife’s face. When he looked at his wife's face all he saw was a hat (Book: The Man Who Mistook His Wife for a Hat).

These“mysteries” have not disappeared, we solved them. But we have moved onto new mysteries that society and science view differently than they should.

The brain and the highway nerve system that runs through our body meridian is extremely complex, so much we haven’t even begun to understand the brain.

It’s important to know that the body is extremely complex and everything that intersects our lives from genetics, where we’ve been, our (toxic) food and environment filled with cancer-causing chemicals like benzene in oil or events like accidents can trigger rare conditions and cancer.

The western system has greatly failed us rare zebras. For many, if a medical professional or medical science hasn't heard of it, it doesn't exist.

You don’t exist.

I’ve never heard a doctor say, “I don’t know what’s wrong with you.” Instead they pump you with cover diagnoses, anti-depressants and pain killers while crossing their fingers that you will stop coming and asking “What is wrong with me?”

What I’m saying is we can’t use our own experience as a gauge for what is or isn’t possible. Instead, we need to expand our imagination, and while it’s easier to be a skeptic or disregard those who experience life in unbelievable ways, it behooves us to start listening.

We require and deserve investigation.

I spend a lot of time researching and learning about rare disorders and illnesses and you can’t imagine how life-altering and severe so many of them are.

How rare. Unknown. Complicated. Obscure.

There are more Americans who live with a rare disease than ALL of those who have either HIV, Heart Disease or Stroke.

So much is yet to be discovered.

* * *

I’m a follower of science but inherently with time science is constantly proving itself wrong; proving past or current “truths” as untruths, especial medi-cal science. Like in the 50s when medical science recommended pregnant women smoke.

Science, by design, is meant to disprove itself and it does all the time. Every year. Every generation.

Some of the things science regards as safe today will most likely be discovered as unsafe in 50-100 years which proves (medical) science is not definitive law, it’s a starting point and ever-changing.

The truth is what we know doesn’t even come close to outweighing what we don’t know, and what we don’t know is essential for humility in the medical world so they can understand patients and acknowledge out loud when they don’t know, instead of guessing or pretending to have the answers and/or diminishing their patients.

Our myopic medical system leaves too many people in the dust, people you will never hear about. So many of us have complex chronic illnesses and never receive proper care and/or die. While Dana's story is unusual, this is what the real world of healthcare looks like.

Unfortunately, the sick and complex cases are never talked about nor given a mainstream platform. We suffer physically and financially in silence and when conversations arise about our corrupt healthcare system, we exist in propaganda buzzwords like “privileged” and the public repeats this damaging rhetoric.

Illnesses are not a poor man's disease but it turns people poor.

America has the most expensive, most wasteful and ineffectual healthcare system in the world. The NUMBER ONE reason for personal bankruptcy in America is healthcare. We also have the most outrageous pharmaceutical costs in the world with prolific mark-ups.

The main reason for all this is the system has been riddled with legalized bribery/corruption for decades.

Our healthcare system dogs the sick and disabled with rhetoric and lies given by corrupt figures of class or special interests who have wealth and good health. And that rhetoric trickles down to the public as the middle-class and the poor battle each other, rather than the top who are responsible.

We live in a country where any person sharing how the system has shattered our lives is reduced to rhetoric like, “You're privileged” and “Pull your boot straps up”. 

This rhetoric stems from corporate-owned media, special interests and BOTH sides of the corporate-owned political aisle (republicans and democrats) who take equal briberies from private insurance and pharmaceutical companies in exchange for ensuring status quo resumes. And ANY tactic necessary to prevent change is used by the industry and congress as they spit out propaganda with numerous deceptive and manipulative ploys.

Big Pharma, private insurance and other special interests are often funding “research articles” or reports that rail or fear monger against any initiatives or policies that could end this corrupt-filled system and the obscene profits they make from people’s lives. So, please look deeper into WHO is funding these kinds of “reports”. There is a special interest behind many of them.

It's ironic this “privileged” rhetoric comes from privileged officials who have made their multi-millions from public office, while making sure congress contains and elevates their own personal universal healthcare system they demand from taxpayers, yet collectively work against the public in providing a more honest healthcare system.

* * *

Science advancement is also greatly stunted by influence. For example, research groups/labs are under constant influence as they jockey for funding and many times fall under prey to big pharma (pharmaceuticals) or special interests who desire a certain profitable outcome and pay for those outcomes.

Not much different than our political system, science and research can also be corrupt and it is all the time.

Scientific review or research of any treatment is often paid for by the (pharma) company selling the product, which is a conflict of interest. And then everything filters through a congress where BOTH conservatives and liberals are bought by private insurance and big pharma, another conflict of interest. And then at LEAST one big pharma CEO or representative of most all major pharmaceutical companies sits on the board of EVERY single corporate-owned media network.

This union between Big Pharma and the mainstream corporate media is a textbook example of a symbiotic relationship. “Big Pharma depends upon Big Media to present a positive image of the industry, while Big Media receives billions of dollars from Big Pharma for advertising.” This relationship even means running bought and paid for “research” or propaganda aimed at squashing any meaningful legislation.

* * *

In 2016, pharmaceutical companies spent over $6 billion on multimedia advertising.

Did you know the United States and New Zealand are the only countries in the world to allow direct advertising of prescriptions to the public? It’s called DTS (direct-to-consumer) and this was gifted to big pharma in 1985. Even physicians take issue with DTS.

Drug TV advertising is bad for a number of reasons. For one, marketing costs play in fueling escalating drug prices and also inflates demand for new and more expensive drugs, even when these drugs may not be appropriate. Pharma companies spend 19 times more on marketing than research which is what you and I are really paying for when we need pills — a corporation’s advertising platform.

There are two big pharma lobbyists for every Congress member.

Most of the public isn’t even aware that special interests, corporations and lobbyists write MANY of the legislations and bills, not the politician. In fact several former congress members have admitted to never even reading the actual policy, instead the corporate lawyer of special interest hands the politician the policy and they just submit it.

In 1997, drug companies spent roughly $17.1 billion on marketing for prescription drugs. By 2016, that figure was $26.9 billion. The total US spending on prescription drugs catapulted from $116.4 billion to $329 billion, and shelled out $2.5 billion into lobbying and funding members of Congress over the span of ten years (1998-2012).

Of the nearly $30 billion that health companies spend on medical marketing each year, around 68 percent (or about $20 billion) goes to schmoozing doctors and other medical professionals to persuade them to prescribe their product.

You and I pay for this.

Are you following what I’m getting at? It’s a big club and we aren’t a part of it and as a result our lives and health is purely a business to be profited from.

I could talk and write about this subject all day. There is so much to the medical system and how it intersects money, power and our political system so I urge you to do your own research and never rely on one source or one mainstream (corporate owned) network, including their corporate board members who have their own ulterior motives and special interests. 90 percent of our information is today owned by only FIVE corporations so vary and look into all kinds of media including credible independent media because you will never receive the full truth from one source.

In divisive efforts, the public is led to believe our grievances or inability to reach any reform is the result of one side, the “opposition”, when in reality the system is more bipartisan than we are led to believe.

So, how can someone like Dana or I, a disabled and sick individual who is caught in the raptures of greed and lies, overcome such a corrupt system? I'm already sick and losing function 24/7 with little energy to fight, yet often find myself caught in the bureaucracy of others profiting off of my life.

Our healthcare system and private insurance has taken Americans hostage, turning our bodies into a UPC code; a commodity to acquire unimaginable profits from and I'm sick of it. It's unconscionable that someone on their death bed has to fight insurance for life-saving treatment and equipment. Politicians tell us they have no money when it’s something for the average American worker, yet indiscriminately waste trillions of taxpayer money on endless corporate welfare and war welfare and ratchet up the deficit and debt for their buyers. 

We desperately need real change and a system that represents us all. If you would like to read a deeper dive into how our political/healthcare system works, click for my thoughts here.

* * *

I've rewritten this blog entry a dozen times and after I finished had the idea of doing a drawing to accompany Dana’s story. It’s taken months to complete. Part of it is dealing with my own health and the many setbacks that have happened and slowed me down the last 3 months. The other part is feeling like I couldn't quite express who she is and what she is going through. I'm often writing and drawing my own story but this was the first time I was drawing about someone else and it affected me.

I'm overwhelmed with thoughts because there is so much to say. Dana's story is heart-breaking in a hundred ways and it's not fair.

Life is not fair.

Thinking about her daily minutes has brought me to tears many times, not out of pity or fashionable “inspiration porn” but out of understanding and concern.

I wish I could fly to her. Be with her even if our time together was met in silence. Just to say, “I care. I see you”.

The body is a complex puzzle to be solved and patients are often left to fend for themselves.

With complex illnesses our whole life is about trying to feel better or avoiding things that can trigger us. It’s usual to miss your old self; the one who was healthy and not in constant pain. It’s a process that causes you to grieve for your old self; someone you used to know that never will be again. 

I know all these trope emotions too well and it pains me to know intimately that others are experiencing the same as they deal with the unfolding of their life due to a roll-of-dice genetic mutation or some other factor they couldn't help. 

We should ask ourselves in any situation, “What if this was someone I loved?”. I wished we stopped and imagined other people's lives. This imagination could breed compassion.

Sometimes we are so numb to others’ suffering. Where is the compassion? 

Perhaps, I feel the compassion because I myself have felt the depths of lonliness and struggle in my health journey — feeling like I had no one in my darkest hours and ready to end it all — as I initially journeyed through a diagnosis and progression alone. The whole journey is hard, harder than most can imagine and it’s painful and sobering to know Dana has to go through all of this.

We’ve been taught that a position in life is deserved, which makes it easy for us to label and stereotype and then disregard. But the story is usually so much more complex. When people look at the sick and disabled and call us “privileged” for wanting a working and non-exploitative healthcare system, I wish they would seriously stop and think about stories like Dana and I, and what a physical struggle it is to be sick while living in the middle of a predatory healthcare system.

Individualism is great but we can't be here just for ourselves. We are here to journey, to go through stages. We are here to learn from each other. We are here to help each other. We are so much better when we imagine the bigger picture; when we stop thinking of ourselves and our inner circle and imagine the greater purpose to us as a whole. It benefits us to take a moment and consider the whole of humanity as we think of the greater society we want to leave behind. 

People like Dana show us the potential of the human condition. How we overcome. How we survive. How we can face the beautiful brutality of life’s hands on our neck.

Read further below:

(below is more in-depth read about our healthcare system and why it is the way it is.)