Allen Golec

Dystonia is a neurological movement disorder that causes muscles to contract uncontrollably. This results in twisting movements or postures that are repeated and can be extremely painful. What’s more distressing is that these movements occur involuntarily, making it difficult for those affected to regain control.

In 2017, I filmed a video of Abigaile, and it’s a moment I’ll never forget. Watching her in this video, it’s hard to imagine anyone not recognizing the pain she was enduring. As you listen to her voice, you can hear her calling out from discomfort. She was in distress and simply wanted someone by her side. Her mother, who was in another room, was aware of just how intense Abigaile’s episode was at that moment.

What’s even more painful to reflect on is that Abigaile’s mother didn’t want these episodes recorded or shown to her doctor. Abigaile’s mother feared that Child Protective Services might get involved, yet denied Abigaile was in pain and would scream at anyone suggesting she was. As she state she “Knew her child” It was clear that Abigaile was in agony, and her suffering was evident to anyone who saw her struggle.

In hindsight, it is no wonder why I left with Abigaile and her sister on May 21, 2017. The decision to not to leave sooner, during such vulnerability, still weighs on me. The balance between compassion and understanding in these moments is difficult to navigate, but what remains clear is that Abigaile’s pain was real, and her need for medical intervention was urgent.