A new appreciation of the yin and yang of life

I’ve never been someone who spends time looking back to psychoanalyze my past or delve deeply into philosophy. Instead, I’m typically looking forward, planning, and moving ahead. However, two significant events that unfolded in a matter of a few days recently forced me into deep reflection. They reminded me of the yin and yang, a symbol I grew up seeing everywhere in Asia.

My wife, Judy, grew up in Taiwan and Thailand, while I grew up in Japan and Thailand. In each of those countries, you can find the yin and yang symbol everywhere. I understood it only in a general sense where it represented balance, opposites, and duality. But after what happened, I see its meaning much more clearly.

The yin-yang symbol shows two halves that form a whole. Yin is often described as darkness, grief, or rest, while yang is light, joy, and movement. Yet within yin is a seed of yang, and within yang is a seed of yin. They’re never truly separate. They’re always intertwined. Life and death, sorrow and hope, struggle and triumph. Each half gives meaning to the other.

This truth became real for me in a single week.

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The yin

First came devastating news. A child in Taiwan, whom Judy and I knew well, passed away on the heels of Taiwan’s National Health Insurance Administration announcing that gene therapy for aromatic l-amino acid decarboxylase (AADC) deficiency would be covered. Rylae-Ann, our daughter, had photos taken with her during past trips. The news shattered us. We’d already lived through the fear of nearly losing Rylae-Ann several times, most recently to dangerously low blood sugar. Still, nothing compares with the permanent heartbreak of losing a child.

That was yin in its deepest form: the darkness, grief, and aching stillness of loss. Yet within it was the seed of yang, the precious memories we hold of her and the comfort in knowing she is finally free from the shackles that AADC deficiency places on the lives of children.

The yang

Just days later, however, another event unfolded. We learned of a new AADC deficiency diagnosis here in Bangkok. We learned about a baby girl who is just over 6 months old. Because of the growing awareness around this rare disease, the awareness that Judy and I have dedicated ourselves to raising, the family received a relatively fast diagnosis. The doctor even connected us.

This time, what we saw was yang. A young family and new friend filled with hope, possibility, and a future they never thought was possible. We had another family living nearby who would relate to our struggles.

The seed of yin was the uncertainty and knowledge of the difficult path that lay ahead for the new family. Despite gene therapy being available in many countries, it remains inaccessible to families in Taiwan unless a spot becomes available in a clinical trial. Many families are desperately waiting to be one of the few selected.

Two events, side by side. Death and life. Despair and hope. Yin and yang.

In December 2022, Rylae-Ann toured a temple in Taiwan after a recent AADC deficiency parent meetup. (Photo by Richard E. Poulin III)

The yin and yang

I realize now that I cannot separate them from each other. The grief of loss gives weight to the joy of hope, and hope gives purpose to the work we continue. With AADC Deficiency Awareness Day approaching, Judy and I plan to honor the children and families we’ve lost along the way, while also celebrating the milestones of those who continue to fight.

I may not be a naturally retrospective person, but these experiences left me with no choice but to reflect. The yin and yang of life are always with us.

Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.