Brain on Fire: My Month of Madness

Sometimes, Just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.

We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it.

To move foward, you have to leave the past behind

Someone once asked, "If you could take it all back, would you?" At the time I didn't know. Now I do. I wouldn't take that terrible experience back for anything in the world. Too much light has come out of my darkness.

No great mind has ever existed without a touch of madness,” Aristotle said.

I had asked him many times why he stayed, and he always said the same thing: “Because I love you, and I wanted to, and I knew you were in there.” No matter how damaged I had been, he had loved me enough to still see me somewhere inside.

The brain is a monstrous, beautiful mess.

In the spring of 2009, I was the 217th person ever to be diagnosed with anti-NMDA-receptor autoimmune encephalitis. Just a year later, that figure had doubled. Now the number is in the thousands. Yet Dr. Bailey, considered one of the best neurologists in the country, had never heard of it. When we live in a time when the rate of misdiagnoses has shown no improvement since the 1930s, the lesson here is that it’s important to always get a second opinion. While he may be an excellent doctor in many respects, Dr. Bailey is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.

Maybe it’s true what Thomas Moore said: “It is only through mystery and madness that the soul is revealed.

You have to look backward to see the future,” he often said to his residents. --- stated by Dr Najjar. So true in many settings

When the brain is working to remember something, similar patterns of neurons fire as they did during the perception of the original event. These networks are linked, and each time we revisit them, they become stronger and more associated. But they need the proper retrieval cues--words, smells, images-- for them to be brought back as memories

I had lost confidence and a sense of self. Who am I? Am I a person who cowers in fear at the back of a spin class, avoiding everyone’s gaze? This uncertainty about who I am, this confusion over where I truly was in the time line of my illness and recovery, was ultimately the deeper source of the shame. A part of my soul believed that I would never be myself, the carefree, confident Susannah, again.

On April 2, the nurses started my first round of five intravenous immunoglobulin (IVIG) infusions. The clear IV bags hung on a metal pole above my head, their liquid trickling down into my vein. Each of those ordinary-looking bags contained the healthy antibodies of over a thousand blood donors and cost upwards of $20,000 per infusion. One thousand tourniquets, one thousand nurses, one thousand veins, one thousand blood-sugar regulating cookies, all just to help one patient.

I am far, far away from here. I am myself again.

What else had I forgotten? What else would come back, knocking me off balance and reminding me how tenuous my grip on reality was?

How many people throughout history suffered from my disease and others like it but went untreated? This question is made more pressing by the knowledge that even though the disease was discovered in 2007, some doctors I spoke to believe that it’s been around at least as long as humanity has.

There are few other experiences that can bring two people closer than staring death in the face. •

It just begged the question: If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?

Like daffodils in the early days of spring, my neurons were resprouting receptors as the winter of the illness ebbed.

Thomas Moore said: “It is only through mystery and madness that the soul is revealed.

The existence of forgetting has never been proved: we only know that some things do not come to our mind when we want them to. —FRIEDRICH NIETZSCHE B

Sure, I had gained a lot of weight...I had begun to fear that I would never lose (it) and would be forever confined to this foreign body. The problem was much more superficial - but easier to grapple with - than my real worries about being trapped in my broken mind... When I worried about being fat forever, marred in the eyes of those closest to me, I was actually worried about who I was going to be: Will I be as slow, dour, unfunny, and stupid as I now felt for the rest of my life? Will I ever again regain that spark that defines who I am?

There are surprising similarities between this diary and the diary I kept during junior high school. In each, there's a stunning lack of insight and curiosity about myself. In place of deep thought, there are dozens of passages dedicated to my body (weight gain in the recovery piece and lack of breasts in the junior high journal) and silly, petty issues of the day (hating hospital food versus fighting with frenemies).

You have to look backward to see the future." (p. 128)

Zihin, Noel ağacını süsleyen bir lamba devresine benzer. Beyin iyi çalıştığında lambalar pırıl pırıl yanıp söner ve yeterince uyarlanabilir bir yapıdadır, öyle ki ampullerden biri sönse bile sıklıkla geri kalanlar parlamaya devam eder. Ama hasarın yerine bağlı olarak kimi zaman patlamış bir ampul hepsinin kararmasına yol açabilir.

Stephen was alluring in that languid, stay-out-all-night kind of way: a musician with long, unkempt hair, a skinny smoker’s frame, and an encyclopedic knowledge of music. But his eyes, trusting and honest, have always been his most attractive trait. Those eyes, with nothing to hide, made me feel as if I had dated him forever.

just begged the question: If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward? CHAPTER 30 RHUBARB By my twenty-fifth day in the hospital, two days after the biopsy, with a preliminary diagnosis in sight, my doctors thought it was a good time to officially assess my cognitive skills to record a baseline.