I am certain, the one thing Tami would want us to know about her life and the events that led to her untimely death, is that her story be told in its entirety. She wanted the opportunity to tell it herself believing it might spare others the pain of traveling down the path she had to travel, but that wasn’t to be.  As her end drew near, she asked me to share her experience and find a way to use it to help others.  That was Tami-always looking for the opportunity to contribute, to do well, even in tragedy.  This won’t be easy-not just because of the emotion and heartbreak of the shortcomings of the medical community, but because it is impossible to find the words to describe the essence of Tami. Tami was strong, determined, intelligent and well spoken.  She commanded your attention and her smile would light up a room. Even in her hardest times she was determined to bring a spark of joy to others.

Tami spent much of her adult life working with the medical community, yet we let her down, I included.  Yes, our vast top tier medical community, let her down.  She slipped through the cracks despite multiple warning signs, which we all ignored-until it was too late.   The primary goal of the Tami Wilson project is to increase awareness of difficult to diagnose diseases thus decreasing the protracted time to diagnosis, ultimately providing the earliest, best opportunity for successful medical intervention. Sadly, her story is not the first, but the goal is to make it the last.  No more missed and missed and missed again signs, symptoms and diagnoses.  You cannot fully understand the tragedy of Tami’s end without candidly sharing the shortcomings of her diagnostic journey.

Tami had a brain tumor.  It took her life.  However, she did not present with what we expect to be the most common presentations of a brain tumor.  She never had headaches, double vision, changes in speech or motor function, weight loss or night sweats. Instead, she had atypical yet equally stark signs that something was seriously wrong which we all recognized but missed.  While the tumor was growing, her body amazingly had the capability to adapt-for a while, in fact a long while. However, there was one exception, the essence of who Tami was changed slowly yet dramatically.  The only subtle diagnostic clues were the changes in her behavior and personality.  The brain controls the functions mentioned before, but it also controls who we are, and she slowing became a person her friends and family no longer recognized.  She knew something was wrong, that she was veering off course, and tried to put words to her experience. We didn’t hear her. We looked for character faults to explain the change, not disease.

Tami was articulate but began franticly talking faster than her norm.  She told too many private details and thoughts not in keeping with her usual professional manner.  Her personality, character, and the essence of whom she had always been had changed dramatically. Her priorities changed. She drank a lot, smelling of alcohol early in the morning with no attempt to hide it. She talked of being anxious, having what she described as panic attacks only relieved by excessive alcohol.  She had been seeking help for her anxiety, but the treatments were not helping.  Tami wanted help and I was worried for her.  This behavior was leading her down a sad path-one we all seemed to think she could correct. Finally, after watching her destructive behavior long enough, I sat her down and shared my concerns about her mental health.  She agreed to be evaluated and later admitted to an addiction center. She went willingly, she worked the program inpatient and outpatient, and she did her part. Unfortunately, addiction wasn’t the root of the problem, you see, we failed to do our part-she was misdiagnosed.

Again being an uncharacteristically open book, Tami spoke of her failure to remain sober because of her anxiety, that the panic attacks had returned as well as a new problem-she shared with me that she had lost control of her bladder.  She had wet her pants. There is was, the obvious diagnostic clue that this could not be just anxiety and substance abuse, there must be more to the problem. That sounded more like a seizure.  That very day, arrangements were made to get her an urgent visit with a neurologist that specializes in seizures. The storm that had been brewing in her mind and body had finally caused enough damage that it could no longer be overlooked. This was the day that would begin an even tougher road she must travel, but this time, she wouldn’t be alone. 

I learned from Tami in her healthy days, but more so through her illness.  She taught me to never ever make assumptions or to look the other way.  Tami knew something was wrong but was under the care of physicians and therapists.  She had the loving support of her family and friends and was confident she had mental health issues of anxiety and panic attacks. She was self-medicating with substance abuse.  However, through it all, she was evaluated and treated by specialists, she did the therapy and left her family for inpatient rehabilitation trying to address what was thought to be a mental health issue.  I too assumed she had changed, that her mental health was unstable.  I shouldn’t have jumped to that conclusion.  None of the medical community should have made that assumption. You see it wasn’t her mental health, it was a brain tumor.

My assumption errors ran deep as is often the case among the medical community.  I assumed she and I had the same understanding of what defined panic attacks and anxiety.  Therefore, my assumptions allowed me not to ask her key diagnostic questions. It was right before our eyes yet unseen until it dawned on me that she was having a physical problem with her neurologic function. The moment she shared that her panic attacks were now accompanied by peeing her pants, the diagnosis no longer fit. I stopped assuming she was correctly diagnoses and cleared my presumption that someone else in the medical community had properly diagnosed her and begin to question and evaluate ever detail about the change in her personality and her symptoms.  Tami didn’t exhibit any of the diagnostic criteria required for panic or anxiety, those were simply the words she had available to her to describe her experience when in fact it was tumors and their ever growing ability to impair her cognitive abilities and behaviors.

 Tami wanted me to make sure the world knew, that she was not crazy, and she was not a drunk.  How sad that her final months were of feeling shame for something that wasn’t her faulty.  Tami had a fatal brain tumor.  Yet how wonderful that when properly treated, her true personality emerged and she had a few weeks of normalcy with her family to remember as she was before the disease affected her personality and self-control. She wanted me to share with everyone that her drastically different behavior was the diagnostic clue that her brain was sick, not a reflection of any morale short coming.

These were her last wishes; she wanted the world to look at her with grace and understanding for the things they saw and understand that were not the essence of Tami. She never wanted that to be her legacy. Cliff summarized this mission so eloquently with the following words “no one blames the brain; they blame the patient”.  This simple observation is my driving force to be an agent of change for Tami, her family, her beloved Josh and their boys. She honored me with the task of bringing the tragedy of missed diagnoses to light as well as correcting misconceptions regarding the life and honor of Tami Wilson.  I am going to do my best to honor her request. She and others with the same story deserve nothing less.  Never assume. Always dig deeper. Always look for clues.

Before her death Tami envisioned a change in how patients with behavioral changes are evaluated.  We spent many of her final hours planning a program applicable to the medical community, across specialties, to shift the paradigm for early intervention and imaging. Don’t always assume it is a mental health issue.  We hope you can look at our initiatives and consider joining the Tami Wilson Project.  Don’t blame the patient, blame the brain.  #Tamistrong