Molly Beane

If I had to summarize my brain injury journey in one word, it would be abandoned.

Not by my family. Not by my friends. By the system that was supposed to help me heal.

In August 2018, I fell down the stairs while preparing for an investor meeting for my small business. I woke up in a CT scanner in the ICU, not knowing where I was or how I got there. I’d cracked open the back of my head on a hard tile floor. Doctors said I was lucky to have survived.

In the two years prior, my company had grown from a small Etsy shop into a brand carried in hundreds of retailers across the United States and six other countries. We had just been featured on Good Morning America. I was in conversations with Ulta Beauty about a 300-store rollout. I had a team of eight and had just been named Small Business of the Year from my local Assemblymember. I was raising venture capital. The trajectory was clear. Business was booming.

After the injury, everything changed.

I was bedridden, unable to look at a computer screen without becoming physically ill. I experienced relentless nausea, debilitating headaches, and sensory overload so severe that ordinary environments felt intolerable. I lost nearly 50 pounds due to nerve damage. Cognitive testing showed my memory had dropped a full standard deviation below the norm.

But I looked normal — which meant that every time I described what was happening inside my body, I was treated as if I were exaggerating or imagining it.

To see a neurologist, I waited six months.

When I finally got in, I was almost never seen by the same physician twice. My care was managed by a rotating cast of locum tenens providers — temporary fill-ins from other counties, working from whatever notes made it into a chart. No single doctor owned my case. No one tracked my trajectory. When I needed support managing individual symptoms, I was told my best option was to go to the emergency room. At no point did anyone treat my condition as a long-term neurological condition requiring coordinated, continuous care.

No one told me what to expect. I was given a recovery timeline of three to six months. That estimate was wrong by more than three years.

That gap had real consequences. It cost me my marriage.

My husband could not understand why I was not better after a year. Without accurate prognostic information from a consistent treating physician, I had no way to explain what was happening. I did not have language for it myself.

No one prepared me for the psychiatric consequences. In the first eighteen months after my injury, I developed major depressive disorder and panic disorder. At my worst, I was having multiple panic attacks a day. I eventually checked myself into a psychiatric facility for suicidal ideation. I remember lying in bed, crying out for help because the depression felt inescapable. This is not rare after traumatic brain injury. The clinical literature is clear. Yet I was never warned, never screened, and never treated within a system that recognized these symptoms as part of my injury. It could have cost me my life.

In December 2020, more than two years post-injury, a physician looked at a new brain scan and told me I had permanent brain damage and would never fully recover. That was the moment I stopped waiting for the medical system to save me, and started saving myself.

I did recover. Fully, and against the prognosis I had been given. I have since run five half-marathons and rebuilt my career. In measurable ways, I am stronger now than I was before.

But I want to be precise about something: my recovery is not evidence that the system worked. It is evidence that I survived when it did not.

I had advantages that many survivors do not. I had financial resources, a strong educational background, and enough cognitive function to advocate for myself. Even with those advantages, navigating care was disjointed, inconsistent, and often ineffective. For millions of Americans living with brain injury, especially those without these resources, what I experienced is not an exception. It is the norm.

The failures I encountered reflect broader structural gaps. A severe and worsening shortage of neurologists, leading to long wait times and fragmented care. Locum tenens coverage is the default in underserved regions, which means care continuity is structurally impossible for large swaths of the country. There is no standard for longitudinal oversight of TBI patients, despite the long-term nature of the condition. Brain injury is not federally designated as a chronic condition, which means payers are not obligated to fund the long-term management that survivors actually need. The psychiatric sequelae of TBI are under-screened and under-treated. The prognostic information given to survivors and their families is frequently inaccurate, with consequences that extend far beyond clinical outcomes.

These are not tragedies. They are policy failures. And they are fixable.

I am sharing my story because it illustrates how gaps in policy translate directly into human outcomes. The experience of living with a brain injury is shaped not only by the injury itself, but by the systems designed to respond to it.

We must do better.