I was working at Walnut Creek’s amazing Changes Salon as a hair stylist — a profession that I loved. My wonderful boyfriend, Brian, apparently loved me dearly.
However, on January 1, 2013 the roof came crashing down on that sunny world. With no warning whatsoever, I was abruptly attacked by a debilitating condition that was eventually diagnosed as an extremely rare disease called NMDA Autoimmune Encephalitis — otherwise known as Anti-NMDA Receptor Encephalitis. The condition turned out to be a terrible thief stealing from me more than seven months of my life. A year-and-a-half later, those precious days are still missing. They are gone forever.
I was raised in Pleasanton. Following graduation I enrolled in Dublin Beauty College. I loved being a hair-stylist and particularly doing color. I joined the team at Walnut Creek’s Changes Salon and did some work as an educator for Wella Hair Products. I always enjoyed helping others. The best part of my business is when, following a session in my chair, my clients look at themselves in the mirror and are absolutely delighted at the image looking back at them. Very often I get the sense that I have not merely improved their appearance, but have given their self-confidence a shot-in-the-arm. They often walk out of Changes with a better attitude than when they entered. In some cases, at least, I’ve been able to make an improvement, temporary but real, in their quality of life.
INTO THE DARKNESS
On the day when my life came to a crashing halt, Brian and I were at my home. I suddenly had a seizure. At least they told me later I had a seizure. I have no personal memory of the incident and, in fact, cannot recall anything from the entire month before the attack occurred, nor anything at all from the succeeding six months. Brian called 911 and an ambulance rushed me to the emergency room at Kaiser Walnut Creek, the very hospital where I had been born three decades earlier.
After being admitted, they said I continued having seizures and hallucinations. Someone characterized NMDA Autoimmune Encephalitis as “The Brain Disease That Makes People Seem Crazy.” In fact, a New York Post writer, Susannah Cahalan, had the same autoimmune disease and documented the experience and her recovery in a book called Brain on Fire. The book is being made into a movie, with Dakota Fanning under contract to play the lead role. In most ways, Susannah’s bout with the disease was similar to mine, except that hers came on in a series of preliminary events and mine apparently happened in an instant. Another big difference is that Cahalan subtitled the book “My Month of Madness,” but my “madness” lasted six times longer than hers.
The Kaiser medical staff did everything they could to diagnose my condition including MRIs, CAT scans, and sonograms looking for tumors. The initial efforts met with no success. Just as Susannah reported in her book, it took a long time to finally figure out what had happened. A number of provisional diagnoses were made and discarded. Two weeks later they transferred me to UCSF where they performed a spinal tap that finally revealed my NMDA Autoimmune Encephalitis condition. The word “encephalitis” refers to brain inflammation, which is a chief symptom of the disease. The swelling was caused by my immune system attacking so-called NMDA receptors, which form the network of nerve cells that control important functions such as mood, behavior, and personality traits.
I learned that NMDA Autoimmune Encephalitis attacks eight times more women than men and the average age is 19 years old. However, the disease has been found in older patients, men, and children. For centuries the disease was misdiagnosed as epilepsy, multiple personality disorder, schizoaffective disorder, or bipolar disorder.
It wasn’t until 2007 that the condition was finally identified and effective treatments were prescribed. In the seven years that have passed since then, about 600 people have been diagnosed with the disease. Apparently it is not as rare as was originally believed because the number of reported cases has been rising dramatically as doctors are becoming more aware of the disorder.
I have no memories of the hospital or of any of my treatments but learned that the UCSF doctors subjected me to a variety of treatments with various medications and chemo. Things began to improve when they did a plasmapheresis, which replaced the diseased plasma in my blood — a process that is technically referred to as therapeutic plasma exchange (TPE).
THE WAY BACK
I returned home in mid-June but it wasn’t until the next month that my mind finally began to record flashes of events and people’s faces, though I still couldn’t recall their names. My recovery was a slow process. For months I wasn’t able to speak a single word. My fine motor skills were seriously impacted and it wasn’t until December that I was finally able to tie my own shoes. The recovery period was like being in a hallway full of closed doors that only opened gradually, one at a time. I joined a support group of NMDA Autoimmune Encephalitis survivors and was heartened by the promise that all the doors will finally open and my recovery will eventually be complete.
I’m writing this in May — a year-and-a-half following the episode — and full recovery hasn’t happened yet. I still have memory lapses, continuing difficulty with fine motor skills, and a problem remembering people’s names or sometimes simply recalling a particular word that I need in a sentence I am speaking. I love books and was always an avid reader, but the disease left me unable to process the words I was looking at. I am getting better, but it is still difficult.
After I finally became aware of what had happened, I discovered that my boyfriend, Brian, had remained at my side throughout the whole lengthy process of illness, diagnosis, and recovery. During the worst part of my illness, Brian and my mom thought someone should be there if I needed anything, so they divided each day between them and for six months the two of them spent 24-hour shifts at my bedside. Mom & Brian were angels sent from heaven. I couldn’t have made this without them and can’t imagine how people survive things like this if they don’t have someone at their side.
I always knew Mom loved me and she proved it by the extended watch she kept by my bedside. But Brian demonstrated a surprising level of commitment for my well-being. Guys typically bring flowers and chocolates as a sign of their love. They are usually hoping to get something in return for their gifts. Brian found a far more sincere way of showing love than that. Someone said that an index to a person's character is how he treats people who can’t do him any good. By that standard, Brian is a prince. I certainly wasn’t doing him any good, lying there in the bed. I can’t imagine how he stuck around when I was behaving in such a crazy manner. I once tried to drink my sandwich. which would have sent most guys heading for the parking lot.
The Changes Salon staff and management couldn’t have been more helpful and supportive. They were amazing. Last March, hair stylists, staff, clients, and friends all participated in a show of support by participating in a 5K charity walk.
I really wanted to resume the life that the disease had taken from me and especially desired to return to my station at Changes and resume the hairstyle business that had been interrupted for such a long time. They had saved my chair and allow me to come in and putter around whenever I feel up to it. It seems an important part of my therapy to be able to at least be on the premises, practicing my speech by talking to others, and building my self-confidence. I began to do occasional hair stylings for family, friends, and models.
Each time I go in I feel stronger and more self-assured. I am planning to begin working part time with actual clients this month.
Part of my therapy has been to eat healthy and exercise regularly, so I’ve been going to the gym on a regular basis. I have been riding bikes, sometimes with Brian, playing basketball, and golfing. I am trying to live a healthy lifestyle and have been avoiding junk food, processed food, and fast food. I am a regular customer these days at farmers’ markets and have been cooking for myself.
As a result of these lifestyle changes, I am in far better shape now than I was before the event. My weight, in particular, has reached a nearly ideal level. Not all of the loss was due to exercise and diet; being hooked up to a feeding tube for weeks turned out to be an amazingly effective weight loss plan. (One that I don’t recommend.)
It was creepy to have six months simply vanish from my life, but the experience reinforced my awareness of how blessed I am to be surrounded by so many family members and friends. My journey through that dark valley gave me a new appreciation of life, as well as a desire to help others who are afflicted with the condition. In March I flew to Durham, North Carolina where I participated as a survivor in a 5K walk to raise money to combat the disease. While there I actually had lunch with Susannah Cahalan, the Brain On Fire author. We had a great time exchanging notes and even laughing at some of the things that most people wouldn’t consider laughing matters.
I counted my blessings when I learned that one-quarter of the people who contract NMDA Autoimmune Encephalitis never recover, and some of them die. The doctors expect me eventually to recover completely. I am looking forward to getting back to the hair-style business that I love and eventually into the Hair Products Education industry. Someday, perhaps, I’ll get married and have a family. In the meantime, I am patiently taking steps, one at a time, on my upward path to recovery.