If science is about asking questions, why do we shame people that do it?

In 2014, RFK Jr. saved my life by asking questions & I think he has more lives to save.

I never thought ‘suicide clinic’ would be in my google history - but it is.

From the outside, my life has looked amazing. My career success started in college as a professional dancer - jazz, hip-hop, waltz, foxtrot, salsa, tango. I majored in ‘Exercise Science’ so I could fulfill prerequisites for med school while still having enough free time to dance and train for hours everyday.

I joined the NFL my senior year - cheering for DC, and I taught ballroom and latin classes to pay the bills. I was great at it and my list of clients was comprised not only of the very people who ran the largest businesses in Baltimore, it also included members of the US Olympic team who had chosen my lessons as their ‘cross training’. Things were good.

I moved to Europe for adventure, bigger stages and bigger opportunities. I danced everywhere - music concerts, professional sporting events, horse shows in Paris (yes horse shows are a thing), the Opera…. the pace was brutal. The booze, training & late nights started catching up to me.

I was getting frequent sinus infections and urinary tract infections (UTIs/’bladder infections’) and found myself on multiple courses of antibiotics. My primary care and ob/gyn didn’t have a good explanation for my monthly infections other than ‘overtraining’ and I wasn’t willing to change my lifestyle or let it slow me down. I treated each event as it came and kept moving.

Until one day, I was in the office suffering yet another infection and my doctor told me about this experimental vaccine that they were offering to prevent UTIs. I was eager to get on with my life and this sounded easy. I listened carefully.

She explained that the shot would strengthen my immune response specifically to the E. coli in my urinary tract (the cause of most UTIs) and make me less likely to need treatment with antibiotics. I asked her about the risks and she told me that while of course there are always risks, vaccines are safe and I had nothing to worry about. As a matter of fact, they could give it to me that day.

The Informed Consent Form was in German, and not the elevator/street German I knew at the time - it was detailed, technical and intimidating. But, signing was the only way to get my ‘magic drug’ so I skimmed, signed, took the shot and headed home to enjoy a 3-day weekend with no plans at all.

The chills started later that night, followed by fever & body aches. I didn’t get out of bed except to go to the bathroom that whole weekend. It didn’t resolve. Over the coming weeks to months, the fever became intermittent and new symptoms seemed to creep up every day - food intolerances with horrific reflux, nausea, massive stomach bloating.

I found myself cancelling plans to stay in bed all day long and buying maternity clothes to accommodate my huge, achy stomach. I struggled to eat because of the severe pain & within 6 months, I’d had to take a leave of absence from my job and had lost over 20 pounds.

I weighed 98 pounds and looked awful.

I was in and out of doctors offices and suicidally depressed.

I replaced going to work, hanging with friends and playing with my kids with googling ‘assisted suicide clinics’ and wishing to die.

And it was during that very dark time in my life that I first read about RFK Jr.

He was a litigator who had a passion for environmental cases & he’d written about the toxicology of various environmental pollutants, that he’d been working to get out of the air and the water because of their effects on the human body.

I read stories of how moms had attended his press conferences and asked him to look at their children’s medical records because they felt that their kids had been affected by the same chemicals that he was working so hard to get out of the air and the water. They knew those substances were there, because they were approved ingredients in their children’s medications despite exceeding published EPA upper limits for adult exposure.

I checked the data presented and they were accurately quoted... Hummm.

I didn’t know what to think so I kept reading, and the more I read, the more I remembered…

Years prior, my daughter had also had something strange happen immediately after she’d received a vaccine. I’d taken her to the pediatrician that morning and then home for her afternoon nap - which abruptly ended with a seizure.

I remember walking into her room and screaming because I didn’t know what to do - she was blue and shaking, and I couldn’t stop it. Febrile seizure they thought.

It’ll pass. But it didn’t.

The episodes continued over the following weeks and eventually the pediatrician sent us to Hopkins Pediatric Neurology for further investigation. My sweet little one was sedated and placed into a MRI machine multiple times over the following months.

It was decided that the nerve cells in her brain were ‘spontaneously demyelinating’ (nerve cells are like wires with insulation on them that allow messages to be transmitted quickly - the insulation is the ‘myelin’ and without it nerves don’t work properly), but they couldn’t say why.

The ‘diagnosis’ left us with more questions than answers.

• Would she die?

• Would it get worse?

• Could it correct itself?

• Why did this happen at all?

• What would it mean for her life?

• Would she be able to live a normal life?

• Did it have anything to do with the vaccines she’d received?

Here’s the response we received presumably from the best pediatric neurologists in the world.

Look, we don’t know what will happen or what set it off.

We do know that if this continues to progress, it won’t be good, but all we can do is wait and see.

There is no treatment.

No, we don’t know what caused it, but it’s definitely not a result of the vaccinations- they simply don’t do this.

We will continue following her and hopefully she’ll recover.

And that was the end of my questioning. Some very smart doctor wearing a white coat said it wasn’t the vaccination, so it couldn’t be.

I didn’t think of it again until years later when I had my own health crisis & started reading the stories of other adults & children that mirrored both my daughter’s experience & my own.

I read mountains of source data - the prescription inserts, the toxicity data on the EPA and CDC websites, and the research studies that had been used to approve the medications (and the ones that had been used to debunk ‘conspiracy theories’ that suggested any risk).

The more actual data I consumed the more I knew that no definitive conclusion could be made.

And above all I realized that the confidence in which I’d been told that it was ‘crazy’ to think that my daughter’s reaction could be associated with a drug that was given to her less than 6 hours prior to having a neurological meltdown that threatened her existence was totally unfounded.

The physician should have had zero confidence in that statement.

• The temporal association alone was reason enough to not dismiss the possibility.

• The inclusion of toxic ingredients 20x the EPAs published toxicity upper limits was another.

But I was told NOT to question.

Many years later, as a clinician myself, I now know that to utter the words:

“We don’t know what caused xyz but that we know with 100% certainty that it wasn’t THAT” is a complete bullshit statement.

My child didn’t die, and thankfully neither did I.

I continued my research and using the information that Kennedy’s organization had provided as a spring board, I found others solving the exact problems that I was trying to solve and with their help, I eventually recovered.

Did a vaccine cause my child’s health crisis?

I don’t know.

Did a vaccine cause mine?

I don’t know.

But asking the question should not only be allowed, but encouraged.

Censorship and shaming of lived experiences should never be permitted.

Patients should be encouraged to share freely and their stories should be documented, catalogued and noticed. They should be empathized with & consoled & the horrors of their experience should spark curiosity in the minds of our research community.

Reports should be investigated by health organizations that are not run with conflicts of interest - with pharmaceutical money - but I didn’t come to that logical, sound view on my own.

I learned it from RFK Jr.

He didn’t tell me what to think, he told me TO think.

And further that it is my job as a citizen of this country and as a clinician to ask the questions that need asking despite how unpopular they may be.

He also brought to my attention that the only people asking questions in the form of research are the pharmaceutical companies either directly through their own funded research for drug approval or indirectly through their funding of government health agencies like the FDA and CDC.

He opened my eyes to the reality that we don’t know what we don’t know and it changed my life.

Pay attention to the people who don’t allow questions to be asked.

And while I may not agree with every health-related conclusion he comes to - I emphatically agree with his principles.

Incentives change outcomes across the board in healthcare & it’s time for them to be realigned. We must have the courage to stand up and question medical dogma.

Real science is a dynamic process, an ever changing iteration of best practices and I’m naive enough to believe that is still possible to fix it.

I hope I’m right.

Tiffany (never medical advice, just my experiences)

Thanks for reading.