After battling back from a troubled childhood, not finishing high school and a failed first marriage, Victoria Jackson created a cosmetic empire. Little did she know that her toughest fight was still ahead of her. One of her three children, her only daughter Ali, began experiencing a frightening health condition known as Neuromyeltis Optica (NMO).
Ali, just 14 years old, knew her vomiting and stomach pains were somehow a sign of a more serious condition. She was right. Victoria Jackson joins her daughter Ali in writing the full story in a new book, Saving Each Other (Vanguard Press, 2012, ISBN: 978-1-59315-733-3). The book includes the mother’s writing in normal text and the daughter’s writings in italics.
Jackson starts the book with five facts of her childhood. The facts include: she was born from an unexpected pregnancy to young parents; she was a preemie; there was little discussion over naming her; her parents divorced when she was nine years old and she was raped by a house intruder.
Because of her traumatic upbringing, Jackson developed a two percent rule. Whenever the odds of something happening are really low, say around two percent, those events usually happen to her. She refers to this rule many times in the book.
Ali writes about one of her early symptoms where her left began to twitch as “a sudden and piercing sensation swept over the top of my eyelid.” Along with the twitch, Ali got the sense of something not being right.
Her mother writes of learning about Ali’s “eyeball headache” and deciding to try Visine. It was a quick fix with an underlying theme of denial, this time on the mother’s part. Eventually the denial became the daughter’s crutch.
Since the Visine didn’t seem to fix the eye pains, the next step was an eye exam that confirmed there was some inflammation along the nerve. From that point forward, Ali and her family endured more tests and more tests until the results were finalized and the doctors gave the family the news.
While the family learned that Ali has NMO, Ali herself refused to hear about her autoimmune disease throughout almost half of the book. She wanted to live in a state of denial, and the family obliged her even to the point of asking her doctors not to discuss the illness with Ali.
Jackson and her husband decided to start up a foundation to help build awareness of NMO, to fundraise for more research and to provide support for those who have the relatively rare disease. Her husband Bill was the funder or the money man, and she was the finder tasked with the job of finding people with NMO and finding researchers in order to bring them all together.
The foundation held a Patients Day event where people with NMO came for a Symposium. Ali attended the event and suddenly became very aware of the physical devastation that so many with NMO have experienced.
Jackson went in search of the right storyteller to work with the foundation to help get the NMO story told. She found Bob Dylan’s son, Jesse, whose own son had been diagnosed with Chron’s Disease, yet another autoimmune condition.
The book is well written. It’s stirring to read each of the author’s words versus reading interpretations of one or the other’s thoughts during the time they write about. The book should bring about much more awareness of NMO. The underlying theme that is expertly highlighted is that when a family sticks together and fights for each other, they can beat some pretty tough odds.Powered by Sidelines