Relearning Joy After a Lifetime of Medical Trauma with Neuronal Dysplasia

Melissa—a Seattle-based mental health counsellor—shares the story of living with neuronal dysplasia, a rare condition impacting the nerves that control intestinal function.

When your body is a medical stomping ground, how do you transform it back into a vessel deserving of joy and pleasure? For Melissa—a Seattle-based mental health counsellor—this question arises from a lifelong exploration filled with relapses, flare-ups, malnutrition, and self-discovery. With compassion and confidence, she shares the story of her rare major pain: neuronal dysplasia.

At just two days old, Melissa underwent her first surgery. Faced with the news that, if their daughter survived, she would likely be deaf, blind, and mute, her parents spent years traveling in search of answers. In elementary school, Melissa’s disease was finally officially diagnosed: neuronal dysplasia is a rare condition impacting the nerves that control intestinal function. After countless surgeries for true and pseudo-bowel obstructions, Melissa has no large intestine and only a partial small intestine. Years of malnutrition and dehydration from her body’s inability to absorb nutrients means that today Melissa receives total parenteral nutrition (TPN) through an IV directly into her bloodstream.

Anyone who has had to abstain from food for any length of time knows what hunger feels like. Because Melissa’s stomach is always empty, she feels these same cues and pangs, but decades of careful experimentation have taught her that eating anything orally results in painful and debilitating symptoms or even surgery. As such, she seeks out alternatives to the pleasurable sensations most people derive from food. From scented candles to cozy clothes and bodywork practices, Melissa provides her body with other affirmations of its innate need for physical pleasure.

The rifts wrought from decades of internalized ableism drove Melissa to hide her disease and work herself too hard to “make up” for her perceived deficits. Ultimately, this resulted in another diagnosis: severe autonomic nervous system dysfunction. She shares what she went through during what she considers the hardest part of her experience and how she worked—and is working still—to shift the mindset that led her there and rejoin all parts of herself into one full, proud human worthy of love, and success, and pleasure.

Shed light on the disconnection of chronic illness and how we begin to heal:

Finding gratitude and joy in the face of an unpredictable and debilitating disease;
The evolution of eating when your body can’t use what you feed it;
The emotional and mental strain of constantly partitioning your “healthy” and “unhealthy” parts;
The importance of intentionality in recovery and rediscovery.

Learn more about the Seattle-based Center for Chronic Illness: https://www.thecenterforchronicillness.org/