I saw a very well done, older movie tonight with Meryl Streep called First Do No Harm. It is a true story about a family whose youngest member developed epilepsy and then became almost a prisoner of the medical system, with the Mother being made into a criminal when she tried to do what she thought was best for her child. For me, having had a daughter who was diagnosed at the age of 11 with a so-far incurable illness, Type I Diabetes, watching what happened to that family felt very personal to me. Such a diagnosis breaks down every formerly held assumption about life, no matter how much you think conceptually you might understand such realities. It hits in a place you didn’t know was even there inside. It can break down a family if its members aren’t each strong enough to deal with the trauma.

The movie brought up memories and still unprocessed experience. The medical establishment saves my daughter’s life every single day and is good to us in ways impossible to acknowledge with enough appreciation and gratitude. But I learned intimately and can say without reservation that the instincts of the parent and the patient – and I am talking about instincts that come from the deepest place inside, not learned fears, prejudices or phobias which should be sorted out from the others by definition – should be held in the highest esteem above any other authority. This should be on the books, in the laws and ethics, in my opinion.

My daughter and I knew where to draw the line between what we gained from the medical establishment, and what took our own authority, sense of power and optimism away, and we both instinctively found a way through the harsh course of unknowing and learning, in and out of hospitals, parent-child meetings and workshops until we forged our own way forward. Arlene is not defined by her disease or confined by it, and, as a weightlifter who is 5th in the nation in her category, is the picture of health and balance physically. I tell this to affirm with all of my heart the importance of trusting instincts in such cases and of not giving over thinking and authority to an establishment driven by a wild array of motives that obfuscate much of the thinking that goes on in them.

There is not always a lot of support for this in the world. Arrogance in medicine and in personalities that offer opinions can confuse you when you’re most afraid and vulnerable. No matter what, listen within. I hope we can support and remind each other of this when the needs arise.