Dr. Tara Zier was in the prime of her life. Devoted mother. Successful dentist. Karate black belt. But then the pain came. She recalls that it was gradual at first, starting seemingly out of nowhere. Her chest would tighten, and searing sensations would pierce her neck. While upper body aches are par for the course for practicing dentists, this was something else: she felt caught in a python’s grip.
The episodes kept recurring, and their severity worsened. Her body was not normal, and the caregiver now sought care herself — and a diagnosis.
The journey that followed was anything but direct and far from happy. Initially and repeatedly dismissed by her providers, Dr. Zier was urged to downplay her symptoms and “spend less time as a patient.” She was even prescribed antidepressants — a frustrating way of being told, “This is all in your head.” Taking charge of her care, she saw specialists and put herself through a series of blood and imaging tests, but none brought helpful answers.
I met Tara in the spring of 2017, when her symptoms (and frustration) were peaking. I remember thinking that this patient, provider and woman could be my own sister, or even me; and I knew that I had to wipe the slate clean and try to understand exactly what she had experienced from the first moment of her now debilitating pain and all that followed.
We became partners — two detectives on a mission to get to the bottom of the mystery. We ran tests and enlisted empathetic and attentive experts. The collective efforts of “Team Tara” culminated in unequivocal test results and a definitive diagnosis: Stiff-Person Syndrome (SPS), a very rare (literally one-in-a-million) condition that progressively affects the brain and spinal cord. Symptoms include rigidity alternating with painful muscle spasms, plus elevated sensitivity to noise, environmental stress and other sensory stimuli.
Healing for Tara has meant far more than just an individualized treatment regimen. Driven by a desire to spare others who share her condition the frustrating and unhelpful dead ends she once endured, Tara created The Stiff Person Syndrome Research Foundation. Tara’s use of her talent, creativity and drive to help patients and families has been enormously gratifying for me to witness. And supporting her work has been an inspiring privilege and reminder that healing takes many forms — with giving at its beating heart.
Today, thanks to the wonders of modern medicine and accelerating research on her condition, Tara is doing better. She continues to receive her primary care at Foxhall Internists and never fails to light up the office with her captivating smile, unstoppable resilience and boundless energy.
Tara taught me much about medicine and science. But she also taught me much about caregiving. It starts with listening. It continues with mutual learning. It develops with healing. And it never ends.