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Sarah Metsch

It’s Never Too Late to Rise from the Ashes

It was close to dawn one morning in 2015 when Sarah Metsch dragged herself out of her wheelchair and into the driver’s seat of her car. Nearly blinded by the pain radiating from her back and screaming involuntarily in agony, Sarah somehow managed to drive herself to the hospital. It had not occurred to her to wait for help. She needed urgent medical attention, and so she did as she had always done: she took control and set out to get it.

This was far from Sarah’s first experience with a medical crisis. At the age of two and a half, Sarah was diagnosed with Spina Bifida, often referred to as “split spine.”  Spina Bifida, a congenital disorder of the spine, has no cure, only surgical treatments to stave off paralysis of the lower limbs and other serious health issues.

Every time she grew, another major operation was required, followed by more surgeries to repair any incidental damage.  Sarah would endure more than seventy surgeries in her young life, at one point having spent more time in the hospital than out.  Sarah came to think of her hospital room as little different than a prison cell. She wasn’t allowed to leave, she couldn’t do anything without permission from the doctors and nurses, and she had no privacy. The life she longed for was what she did in between her long hospital stays, and there was far too little of that.

Sarah, a vivacious, outgoing young woman with a bright sparkle in her eyes and an indomitable spirit, was determined to make the most of her life. She forged a path to an active, independent adulthood, surrounding herself with people she loved and work that mattered. She volunteered in special education classrooms, organized statewide conferences to educate the parents of disabled children on their rights and resources under special education law, and later became the program and policy director for the Autism Society of Colorado. Her life was filled with purpose, even more meaningful because of the hard work it had required to get where she was.

From the outside, it looked like she had made it. In reality, things were much more complicated. Sarah’s romantic relationship, which had begun as a welcome source of companionship, became toxic and abusive.  Unable to free herself from its destructive grip, Sarah’s fragile body was repeatedly pushed past its limits, eventually resulting in the back injury that prompted Sarah’s hellish solo drive to the emergency room.

Her back, she learned, was broken. She would spend the next eight months confined to her bed. Gone was her hard won independence. She could no longer drive, sit upright, or even leave her bed without assistance.  The work that had filled her life with meaning was over and her days were an endless loop of pain and isolation.

Compounding the trauma was the loss of the two people Sarah had always been able to rely on for love and support. Only four weeks after the back injury, Sarah’s mother died from a brain tumor.  Her father sank into a paralyzing depression, forcing Sarah to do what seemed impossible: relocate her grieving father and manage the sale of the family home and possessions, all from the confinement of her bed.  Only eight months later, her father died too.  Sarah had never felt more alone and vulnerable.

Somehow, summoning the self-advocacy skills her parents had instilled in her as well as her innate determination and drive, Sarah managed to go on. She extricated herself from her abusive relationship.  She navigated the complicated Medicaid system and all its maddening rules and was able to hire and train the caregivers she needs to make her life possible, care that includes transportation assistance and personal care attendants without whom Sarah’s life in her own home would not be possible. She joined the Ethics Committee at Children’s Hospital, renewed her advocacy for the disability community, and began sharing her story, a story of endurance that clearly many people needed and wanted to hear.

Sarah’s life so far has been much like that of the mythical Phoenix, taking what might look like destruction and turning it into something beautiful. She has proven, time and again: It’s never too late to rise from the ashes.

Sarah Metsch’s story is underwritten by Terry Rubin.