Given to Fly

“I am alive. I am free. I am flying with the wind. I am me." – Against Medical Advice, by James Patterson and Hal Friedman

Like my son, Cory Friedman wants to fly. Cory seeks the sensation of flight on jet skis and dirt bikes. My son builds rockets and airplanes and watches birds, and dreams of taking flight with them. Cory and my son have something else in common. They both have Tourette Syndrome (TS).

By unhappy coincidence, I read Against Medical Advice, in which James Patterson and Hal Friedman (Cory’s father) tell Cory’s story, on a day when my own son was experiencing his worst bout of severe tics to date. I read with one eye on the book and my other on my son, who was flipping and jerking and throwing himself on the ground with such violence that he looked, for all intents and purposes, like a rag doll being hurled by an angry, invisible giant. As I read Against Medical Advice, I experienced the relief of encountering someone who really understands what life with TS is like, as well as the pain of recalling our past struggles. The book also renewed my resolve to stay the course and continue to manage our son’s challenges as we have over the past year.

Cory and his parents spent years trying to understand Cory’s behavior and how best to manage it. They traveled far and wide to try new drugs, more drugs, various therapies, different experts. School was a struggle, home life was stressful. Cory’s compulsions caused all kinds of large and small difficulties. His mother abandoned her career to manage his care, record his ups and downs, and navigate the public-school minefield. Some treatments seemed to work – for a while. Other alternatives were unmitigated disasters from the beginning. This is how it is with TS. Symptoms wax and wane, like phases of the moon, only with no regularity. When a patient goes to the doctor in despair and tries a new drug, and it seems to work, there is no way to determine if the drug actually is helping the patient, or if the patient has merely entered a waning phase. After a while – perhaps a few weeks, perhaps a few months – the drug no longer seems to help. Has the drug lost its efficacy, or was it never effective in the first place? Should the drug be discontinued, or should the patient try a higher dose – or add another drug?

Against Medical Advice can be painful to read; every time the reader thinks Cory has hit bottom, every time Cory thinks life cannot get any worse, it does. Eventually, after many years, Cory stops taking the massive amounts of medication he has been on for so long, and finds the strength within himself to face his TS and manage his symptoms and his behavior. Have I spoiled the book by telling you that? No – this book really is about the journey more than it is about the destination.

I must admit that certain aspects of this book made me uncomfortable, in more than just a “been there, done that” way. Having already put myself in Cory’s parents’ shoes, and having walked far in those shoes in real life, I found that a number of situations described in the book left me thinking “There is no way I would let my child get into that situation/ get away with that behavior!” Now, this is a delicate subject for me, and I hesitate to mention it, and do not want to criticize the Friedmans’ parenting. I know how hard it is to parent a child with TS. I know the stress, and I know what it is like to feel as if others are watching you and judging you and your child based on behaviors they do not and cannot understand. Given that, I feel it would be petty of me to question the Friedmans’ decisions. It is enough to say that our situations, while similar, are different, and there is no “one size fits all” approach to handling these children. I appreciate the Friedmans’ decision to speak up and share a difficult story. I hope that their effort helps to raise awareness about TS.

Against Medical Advice, is a quick, dare I say easy, read. That is to say, I read the entire book in about ninety minutes; Cory’s story, however, is harrowing. Names and certain details have been changed to protect the innocent, or perhaps merely to avoid legal difficulties. I am sure I am not the only parent of a child with TS who read this book and is trying to determine who is who. One particular episode sent me running to the computer in an effort to determine the real identity of “Dr. Holmes,” in the hope that we might safely avoid that doctor in the future. (I think I was successful!) I would have liked the book to have more details about what did work and what were the positive elements in Cory’s life along the way. Additional information about the impact of Cory’s issues on his mother also would have been appropriate. We are told that she gave up her career, and that she was “an angel,” but we are given few glimpses into her reactions, into how she felt, how she coped for so many years. Cory’s father offers the reader his epilogue; Cory’s mother should have had her say, too.

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About my title for this piece: “Given to Fly” is a song by Pearl Jam, a personal favorite as well as a very appropriate choice here. Obviously, I cannot speak for Cory, but I suspect my son's fascination with flying stems from a desire to overcome his frustration with a body that has let him down so often, for so long. He sees flying as a way to feel free.

A wave came crashing like a fist to the jaw
Delivered him wings,
"Hey, look at me now"
Arms wide open with the sea as his floor
Oh, power, oh
He's... flying
Whole
High... wide, oh

-- E. Vedder