After being diagnosed with a mysterious illness, Doug Lindsay was forced to quit college and navigate his newfound immobility. On a hunt for answers, the former student stunned doctors with what he soon discovered...
Where It All Began
At the end of his summer research fellowship, Doug Lindsay felt adequately prepared to embark on his last year of college. He was set to study Biology at Rockhurst University in Kansas City, Missouri.
Although his first day back went as smoothly as he could have hoped, Doug started to feel unwell when he returned home later that evening. Hoping it was just the aftermath of his first-day nerves, he tried to distract himself and wait for it to pass. Little did he know a life-changing battle was just beginning...
A Disorienting Sensation
There were no early physical signs that could have indicated this upcoming illness. On the contrary, Doug had never been in better shape. In high school, he participated in numerous sports activities and ran for his school's track team. His good health continued into his college days.
Despite this, his first day of senior year would become synonymous with the first day of his life-changing illness. After initially feeling like his room was spinning around him, the dizziness became unbearably intense, and his heart raced rapidly. Eventually, he collapsed onto the dining room table.
A Startling Pattern
Tragically, Doug soon discovered that this alarming episode was not a one-off experience. In fact, a startling pattern started to develop, where he would experience these out-of-control dizzy sensations on a regular basis. When they would calm down, he would be left feeling weak and exhausted.
Moreover, this mystery condition resulted in his muscles feeling achy and cramped. Attempting to portray how fast his heart was actually beating, he explained that if a piece of paper were to be placed on his chest, it would flutter. He had no idea how much worse his symptoms would become...
Daily Life Struggles
Soon enough, the daily activities Doug once took for granted became extremely challenging hurdles. From changing a light bulb to brushing his teeth, no task came easy. Anything that involved him lifting or utilizing his limbs would leave him exhausted and in need of a rest.
Within a matter of months, walking down the street began to feel like a marathon race. After just a few minutes of walking, he would have no choice but to rest on a bench and let his body recover. Although mysterious, his genetic history indicated that this condition was perhaps on the cards from the day he was born.
Like Mother, Like Son
There was no official diagnosis for his new-found disease, but based on the symptoms, it seemed it had been a long-running issue in the family. His mother was sick for most of his life after she began to suffer from a mysterious illness when he was just eighteen months old. Doug had no memory of being held by his mother.
By the time he turned four, she was bedridden and no longer able to walk. Interestingly, Doug recalled one fascinating incident where his mum had a sudden burst of energy in response to him choking on a jawbreaker, reaching out to help him and incredibly saving his life.
A Genetic History
This mysterious condition which left its victims almost completely paralyzed was not exclusive to his mother. His aunt also suffered from an unnamed illness which meant she was constantly weak and could not bend over to close her shoes. In fact, there were multiple members of his family with this apparently genetic condition.
For Doug, it seemed like a matter of time until he would be struck with this disability himself. Not an if but a when. The family would refer to their mysterious genetic history as "a family curse." The fact that they had no idea what the underlying cause was and no available medication made it so much scarier.
Accepting the News
With this newfound immobility, Doug's time had come. Although at first, he didn't want to admit it to himself, he finally accepted that his body was just giving in to his genetics. He called his mum to tell her the tragic news. He explained to her his symptoms which she was sadly familiar with.
Hoping her son would have been able to avoid the family curse, she broke down in tears. She knew the struggles he would face in the future as the condition would progress for the worse. Acknowledging some tough decisions needed to be made, they devised a plan. Doug made the heartbreaking choice to quit college.
An Unknown Condition
When Doug first went to see the doctors, they were convinced he had an extreme case of mono. However, a few months later, when he was still unable to leave his bed, finding the strength only to go to the bathroom or prepare some food, it seemed something else was going on.
Just like in the case of his mother, doctors could not name the disease, extremely confused over the cause. In the past, experts thought it might have been associated with the thyroid, but no conclusions had been made. Determined not to end up like his mother and aunt, Doug set out to find a solution.
From an early age, Doug had big dreams for his future. He had imagined himself completing his biology degree and becoming a biochemistry professor. At the same time, he also fantasized about being a writer for The Simpsons. Within a matter of days, this had all become an alternate reality.
Nothing was helping. He tried all the medications his doctors provided to him, but his condition worsened. His hospital room had become his new permanent residence. Most people, in this case, would become severely depressed, overcome by all the restrictions. But Doug's mind worked differently than most.
Believing that his fate was in his own hands, he began to conduct research from his hospital bed. He remembered in the past, he had discovered an endocrinology textbook on the street and picked it up in his attempt at the time to understand his mother's condition.
After locating this book, he spent most of his days reading through it, desperate to find something related to what he was going through. Although his mother had been informed that she had an underlying thyroid problem, Doug found something which suggested otherwise...
The book stated that adrenal disorders could often be misdiagnosed as thyroid disorders. Instantly, he wondered if this was what had happened with his mother. Relying heavily on his Biology education, he studied intensely to understand the adrenal glands which lie over the kidneys, producing hormones to help the body function.
Building up a huge collection of medical textbooks, combined with his own knowledge, he worked tirelessly for years to develop a hypothesis. This would stem from his newfound belief that there exists a whole range of disorders that can negatively impact the autonomic nervous system. Was this a groundbreaking discovery?
If his understanding was correct, then the categories so clearly defined by neurologists and endocrinologists in the past would prove obsolete. He began to formally gather his findings and produce an official hypothesis. What he came up with shocked the medical world. No one had considered it possible before.
Doug believed that as the autonomic nervous system controlled digestion, metabolism, heart rate, and blood pressure, a condition that affected the system would have a knock-on effect on these functions. Until now, doctors had not even considered a relationship between his disease and the autonomic nervous system.
Taking a Step Up
While the doctors wondered if this patient had outsmarted them, Doug wasted no time and took his research project to the next level. He purchased a computer and was able to expand his research field beyond his textbooks. With the whole internet at his disposal, he searched for more answers.
That was when he discovered the National Dysautonomia Research Foundation website. It was like stepping into a whole new world, full of people like him, suffering from this same mysterious illness. There were so many people dedicated to researching the issue. Perhaps they could combine their findings, he thought.
Not What it Seemed
Excitedly, Doug reached out to the organization, trying to keep his expectations in check. He hoped they would have some enlightening literature that could assist his project or have conducted research with informative findings. This was set to be a huge milestone in his journey. Unfortunately, all was not what it seemed.
The foundation, committed to researching disorders similar to Doug's, was happy to chat with him. However, after discussing his symptoms, they realized that it did not match those they had been studying and was likely a different condition. Although a stumbling block, he was not ready to give up.
Doug realized he had reached the limits of what he could achieve on his own. To take the research project further, he would need to recruit a research partner. He knew the best person for the job would be someone from the scientific community as they would provide any missing technical information.
Until now, he'd attempted the project independently, not seeking the assistance of any professionals or doctors. What he needed was a research expert rather than a medical practitioner - but he was not too sure if he even found one, he would be able to get them on board.
Committed to the Task
Knowing he would need to be seen as a serious figure in the medical research field before approaching any potential partner, he understood where he needed to go to make that happen. Doug's sights were set on attending the 2002 American Autonomic Society in Hilton Head, South Carolina. How could he get there?
Considering walking had become such a challenge, traveling to South Carolina from St. Louis would undoubtedly be a challenging feat. Fortunately, his friends were there to help, assisting him along the journey. On the way, he worried whether he would be taken seriously at the conference. After all, he had no medical degree.
The Big Reveal
With the help of his friends, Doug rode into the conference, seated in his wheelchair. But he did not want to be seen as a patient: He introduced himself as a college-trained scientist. Technically, he was trained; he just hadn't finished the course. Taking on the persona of a medical graduate, he talked with many researchers.
Doug stood up in front of the intimidating group of experts and presented his findings, informing the audience that he believed there was a treatment that could help. Little did he know there was one person listening in the audience that would go on to be a key component in the end result...
Sure enough, the audience was beyond impressed by Doug's presentation. They applauded his professional manner and promising findings. They were even able to overlook the fact that he didn't have a graduate degree, understanding that it was due to his physical restrictions rather than a matter of intellectual eligibility.
Interested in what he had to say, many researchers approached Doug after the presentation. Unfortunately, he returned home with no research grant offers and was left disappointed. However, eighteen months later, everything changed when he was contacted by Dr. H. Cecil Coghlan from the University of Alabama-Birmingham...
Meeting A New Ally
Dr. Coghlan told Doug that although it took him time to reach out, his presentation resonated with him, and he would be interested in a partnership. He proposed they meet at his research facility in Alabama to begin the proceedings. Again, his friends stepped up to make it happen, renting an SUV and driving him there.
Underlyingly, Doug's instincts told him the problems were due to his body producing excess amounts of adrenaline. He was aware of a USFDA-approved drug named Levophed, which claimed to counteract this issue. Unsure how he would respond, Doug nervously presented Dr. Coghlan with his big idea.
The Risky Proposal
Doug was suggesting an unprecedented approach, but he was willing to take the chance if it meant he could possibly have a regular life. The risks were great, but the rewards stood to be even more significant. Doug requested that Dr. Coghlan conduct a medical experiment on his body.
He suggested they test out the USFDA-approved drug on him and see how his body responds. If they began to see some positive changes, they would perhaps be able to take it a step further and convert it into a drip he could permanently feed into his body.
A Promising Result
Intrigued by the idea, Dr. Coghlan agreed. First, though, he would need to adjust the medication slightly to be better suited for Doug's unique body and condition. The drug was being fed into him at all hours of the day - and sure enough, they started to see some changes.
Although slow, there was no denying that Doug's body was reacting to the medication. He wasn't the picture of perfect health, but he was able to move slowly and begin to take care of the small daily tasks he was, until now, unable to do for himself. He had tasted success, and he was hungry for more.
Doug had miraculously found a drug to help him with his mobility and alleviate the symptoms he had been suffering from for the past years. But it wasn't enough for the budding medical researcher. He wanted to find and fix the underlying cause. His next theory would go on to change his life forever.
Previous scans had shown that his abnormal adrenaline levels were not attributed to an adrenal tumor. Doug was sure something else was mimicking the behaviors of a tumor. In 2006, he was proved correct when a scan revealed that his medullas were inflamed inside the adrenals. Was there a solution?
While Dr. Coghlan and Doug were ecstatic at the groundbreaking and revealing discovery, they were instantly unsure whether a solution existed. The team got to work, researching previously recorded cases of this condition they now knew was bilateral adrenal medullary hyperplasia.
Doug continued with his research, sharing his findings with his followers. He was disheartened to learn that although studies had taken place on cats and dogs, there were no informative details about the surgery procedure. Finally, he came across the groundbreaking work of an Argentinean physiologist, Bernado Houssay.
Finding a Surgeon
In 1923, Houssay released a paper discussing the illness and laid out the details of the surgery he had conducted to effectively remove the medulla in the case of dogs. Although Doug was so used to working alone, for this stage, he would need another pair of hands; he needed skilled surgeons to adapt this to a human.
Finding a surgeon willing to conduct the procedure would not prove easy. The surgery was set up for failure due to its experimental nature as the first of its kind. A surgeon would be risking their career and reputation if something were to go wrong. Finally, a doctor at the University of Alabama-Birmingham agreed.
A Miraculous Result
In September 2010, Doug returned to Alabama for the big operation. He was scared of what would be the outcome, but he had come too far to back out now. Unbelievably, when he awoke from the anesthetic, the doctor informed him they had successfully fixed one of the adrenals.
Only three weeks after an incredibly complicated surgery, which his doctor described as "taking the peanut butter out of a peanut butter and jelly sandwich," Doug was able to sit upright with no assistance for a few hours at a time. By Christmas Eve, he was walking a mile in the snow to midnight mass. A true holiday miracle.
Free, At Last
Just under two years later, it was time for Doug to have the medulla removed from his second adrenal gland, and he headed to Barnes-Jewish Hospital to have it done. Although he had already experienced so many positive changes to his mobility, this second surgery provided him with an even better quality of life.
Another year later, his eyes filled with tears as he packed his bags again. Only this time, to fly with his friends to the Bahamas. He couldn't believe he had gotten to this point. He had defied the odds to be there at that moment thanks to his determination and hard work. What could he possibly do next?
Back to School
Unfortunately, Doug's mother was unable to receive the same treatment as him as, by this point, she was too sick, eventually passing in 2016. His mentor and assistant, Dr. Coghlan, who had taken him seriously when no one else did, spent his last few years happily seeing Doug live his fullest life due to his help.
In what was arguably the most full-circle moment, Doug returned to Rockhurst University to finally accept his diploma, sixteen years in the making. After being forced to abandon his studies at a time when his future seemed so bleak, the weight of the moment did not go unnoticed.
"Hope, Science and Faith"
In April 2018, Doug took center stage at TEDxGatewayArchSalon, a regional extension of TED based in St. Louis, to tell his inspiring story of faith and determination. "I decided if I needed a surgery and there wasn't one, I'd invent one," he told the Missouri audience in his opening statement.
In the final part of his speech, he discussed the art of problem-solving. Doug explained how when he has a big problem, he approaches it "as a man of hope, science, and faith." According to him, we need to believe something positive can happen, test it out, try our best, and acknowledge that God will determine the outcome.
Sharing His Story
After receiving a standing ovation at the TED talk, it was only a matter of time until the press got word of his story. Sure enough, numerous publications reached out to Doug to hear more from him and share his story. From People magazine to CNN, the man who created his own surgery compelled readers.
Doug was grateful for the exposure, happily participating in interviews and providing them with a quote. According to his website, he is now a "nationally recognized speaker on hope, character, and innovation" and "has delivered keynote speeches to private corporate clients like Pfizer [...] and Stanford Medicine X."
Doug's journey is far from over. Of course, his health is still not perfect, and he takes medication daily. But aside from this, he is not yet done with his time in the medical world. He now runs a successful medical consultancy practice, where he taps into his extensive knowledge base to help people diagnose their problems.
With Doug's level of determination and self-discipline, it seems there's no limit on what he could achieve. He kept his head held high, even when it seemed there was no way out. Ultimately Doug has shown the power of the human mind, continuously inspiring people who hear his story. And we can't wait to see what comes next...