The Beginning – March 8, 1995| 0
I hate to say that I’m defined by my daughter, but the fact is that when she was diagnosed with a rare and particularly brutal form of epilepsy as a three month old baby, I began a new life and, in many respects, morphed into a new person. Today is my daughter Sophie’s twenty-first birthday, so I think it’s a fitting one to introduce myself to you not only as a writer, but also as a mother of a young adult with severe disabilities whose tens of thousands of seizures were finally alleviated with the use of cannabis oil. I have been a writer since I first picked up a book and read it, realizing in the same instant that I was going to do the same—create worlds and travel paths and tell stories. I scribbled in the margins of books, in diaries and on looseleaf paper. I pecked away on a junior typewriter, turning out poems and novels, a neighborhood gazette, short stories and essays, my face otherwise buried in other people’s stories and tales. Reading and writing, writing and reading, even as my life took me to different cities and jobs as a research assistant in a brokerage firm, as a transcriber for a university social science department, as a waitress and a cook and a pastry chef. When my daughter was diagnosed, literally out of the blue, one hideous day in June of 1995, after a couple of blissful, “normal” new baby months, I abruptly stopped writing and got to the task at hand. The task, of course, was to do what the doctors told us and help her to get well. That didn’t happen. Nineteen years and twenty-two powerful pharmaceuticals later, Sophie continued to have multiple seizures daily, sometimes numbering in the hundreds. Her development had slowed and then plateaued. She was nonverbal and needed assistance with all life tasks. It was and continues to be both exhausting to care for someone entirely dependent on you, year after year, and a complete honor to give of oneself and care for someone so pure, vulnerable and strong. When we began giving Sophie cannabis oil at the end of 2013, when she was nineteen years old, she almost immediately responded by having the first seizure-free days since diagnosis at three months. She began to smile again and look us straight in the eye. Just over two years later, she has 90% fewer seizures overall, and we’ve been able to wean her from nearly ¾ of the powerful drugs that have done nothing to control her epilepsy but much to disrupt her quality of life.
Severely cognitively and physically disabled by seizures and the drugs that failed her, Sophie has nevertheless maintained a quiet grace and strength that has not only inspired but shaped who I am. That we would find this treatment so late in the game and then be a part of a near-revolutionary community takes my breath away. My intent for this weekly column is to chronicle our journey to cannabis and healing and to engage those of you curious about it to join the discussion. It will be encouraging to those who are new on this path. It continues to be moving and hilarious and absurd and frustrating and, above all, a work in progress and a sort of map-making. I have been shaped and changed by it. I think you will be, too.