Detour from Normal (40 page)

"Mr. Dickson, I'm Dr. Cree, your cardiologist. How are you feeling this morning?"

"OK, A little sick."

"I'm sorry to hear that. That's a consequence of your low heart rate. As I'm sure you're aware, your heart is having some difficulties."

"Yes," I gulped.

"Essentially what we're seeing is that there is no conduction between the upper and lower chambers of your heart. As a result, the lower portion is beating at a sort of default rate, which is very slow. It's also beating in an abnormal fashion, so it's very inefficient. As a result, you may have noticed that you can feel a stronger-than-normal beat as it tries to compensate."

It was true. I could often feel the slow pounding beats without even having to place my finger over an artery. I could almost hear them.

"This condition is called bradycardia," he continued.

Oh, just get it over with,
I thought to myself. I was quite familiar with bradycardia. I didn't see any way around what I knew was coming next.

"It seems the source of this problem is the lithium carbonate you've been taking. You have lithium toxicity."

I was dumbfounded. "What do you mean? I get my blood tested regularly for lithium levels, and renal and thyroid function. The tests have always come back fine."

"That's true, and according to blood tests from last night when you arrived, your lithium levels are actually on the low side of therapeutic.
The point is that these levels, even though they meet conventional standards of safety, are toxic to you. We need to get you off lithium right away."

I was concerned. Based on information I'd read, if I didn't wean off lithium gradually, I could rapidly relapse. "Is there a way we can quickly reduce the lithium in my blood, then wean me off the rest of the way gradually? I've heard that if you go off cold turkey it can result in mania or depression."

"When did you last take a lithium pill?"

"Nine a.m."

"This is a very serious condition, potentially life threatening. That pill was the last lithium you will ever take. Do you understand?"

I hesitated for an instant before responding. "Yes."

"Once we get the lithium out of your system, everything should be just fine. Your heart should return to its normal rhythm."

"OK," I managed to muster. That was a lot to take in. I recalled months before facing up to Dr. Davis, fighting the court battle, and being forced on the drug, as well as the months afterward. I had hated being on lithium right from the start. It compressed my mood into a narrow band so that I never felt happy and was always on the verge of crying—I called it being "emotionally flat." It raised my blood pressure and frequently made me feel hot and uncomfortable. It caused me to toss and turn at night, and I drank water constantly to keep it from becoming toxic to my body. Despite the side effects, I gradually accepted the fact that I might spend a lifetime on lithium. Whereas once it was all I could do to wash the pills down every day, I'd reached a point where I was concerned that if I didn't, I'd go manic again. It was fitting, however, that just as I was forced to take it, now I was being forced to stop taking
it. I couldn't argue with fact: it was killing me. I had been right to fight Dr. Davis after all.

Despite my concerns about going manic, I was overjoyed to learn the simplicity of the solution to my problem. All that was necessary was to continue giving me saline solution through the IV already in place on the back of my left wrist and let my kidneys flush the lithium out naturally. My EKG would be monitored twenty-four hours a day until my heart returned to normal.

I called Beth with the news immediately after Dr. Cree left and then relaxed a bit. I wasn't going to die, I wasn't going to need a pacemaker, and, for better or worse, I was off lithium for good. I turned on the television and was faced with the same routine as at Desert Hope: having to watch all the hospital videos before being able to watch anything else. I watched the required videos, took the test, then put the remote down, and tried to rest again. I was just too nauseous to do anything else. For much of the day, I lay in my room with the lights out, trying to find positions in which I might feel more comfortable. At lunch I ate some mashed potatoes, but that was it. I spent a good deal of time getting up and going to the bathroom as my kidneys worked overtime. Occasionally there would be a rap on my door.

"Come in," I would say.

"Just making sure you're OK. Are you all right?"

"Yes, fine. Is everything OK? How's my heart doing?"

"Your heart rate has been really slow. It's gotten down to thirty-three beats per minute. I wanted to check on you because your heart just paused for three seconds."

"Oh. Is that bad?"

"Bad enough that I need to check on you. I'm glad you're doing OK. Is there anything I can get you?"

"A fresh glass of water with ice would be good."

That same exchange happened several more times during the day. When dinner arrived, I was able to eat half a carrot and a string bean before feeling like I was going to vomit. Later Beth visited. I reclined my bed, then lifted my IV line so she could slip under it and snuggle next to me in bed. We watched a movie together on television. It was very comforting to have her with me. Unfortunately, she had to leave before the movie ended, which was probably for the best anyway. I really wasn't feeling well. I soon switched off the television and room light and then lay uncomfortably in my bed. In the silence I noticed the curious chuff...chuff. .chuff. . whirr sound that the IV pump made. I turned and looked at its glowing orange display through the darkness and tried to imagine what it must have been like with six pumps running at once, pumping nutrients and chemicals into my body at Desert Hope. It must have made a real racket, but I didn't remember it at all. As the evening progressed, it seemed that every time I got comfortable, someone would have to turn on the lights and take a blood sample, measure my blood pressure or temperature, check my oxygen saturation level, or ask me if I was OK. Finally, around midnight, I was able to sleep soundly.

At 2:30 a.m., there was a light rap on my door. "Come in," I said. The night-shift nurse, Diana, opened the door and stepped excitedly into the room.

"I'm sorry to bother you, but I just had to tell you the good news: since midnight your heart has been in normal sinus rhythm."

"Thank you, Diana," I replied. She quietly shut the door and left me. I lay on my back for a while, repeating the words "normal sinus
rhythm" to myself. I realized with great joy that my personal detour—my detour from normal—was finally over. The myriad cones, barricades, and reduced-speed-limit signs were gone, and there was nothing but open road ahead. I smiled. It was an unusually broad smile, a smile that I knew would have been impossible on lithium. I turned onto my side, careful to leave enough slack in my IV line and not dislodge any of my electrodes. I pulled the thin hospital blankets up around me, closed my eyes, and surrendered to a deep, blissful sleep.

Part 4

INSIGHT

Chapter 35

SIDE EFFECTS

I'm not a doctor, psychiatrist, psychologist, or neurologist, and I'm not an expert on other people's mania. Being an engineer, I recognize that problems can only be solved by collecting data and using it to arrive at hypotheses. I've spent a great deal of time reviewing medical records, reading my wife's journal, scouring books and the Internet, and interviewing friends and relatives. To that information I've added my personal memories. From that research I've come to understand many of my experiences...

From Simple to Unsolvable

February 20 2012, my fifty-sixth birthday: All the puzzle pieces fell into place, and I finally made sense of what happened to me. It took being off lithium and once again having full mental capacity. What I discovered is that any of the doctors or general practitioners involved with my illness could have saved me from months of suffering simply by addressing my only concern: sleep. No one dealt with it. Instead I was passed from one professional to another without help.

As I moved from one place to the next, my medical records fell behind and the knowledge of what happened to me was effectively lost. As quickly as that knowledge faded, the prejudice of my caregivers grew. They looked at me once and knew my story: I was manic. Friends and family helping me then were taking desperate stabs in the dark, hoping to find the one doctor who could cure me. Their odds of finding that single person by chance were infinitesimally small. What they really needed was a team of doctors: a psychologist, a neurologist, and a medical doctor.

The psychologist would break through the smoke screen of my behaviors to better understand my disability and help me cope with my changes.

The neurologist would use his vast knowledge of the brain and nervous system, and tools such as a CAT scan, MRI, and EEG to isolate potential causes of my mania, seizures, and extremity pain.

The medical doctor would manage the insomnia and high blood pressure, and perform exhaustive tests to discover what toxins, chemicals, or hormones were at the root of my problems.

That's the scenario that we all envisioned, but sadly there is no such team and it never happened that way. The reality was not one professional consulted with anyone else, ever. My problems became unsolvable by default because of the prejudice, bias, and shortsightedness of those involved.

My Mania

I experienced three distinct levels of mania. Although that may not be typical, the fact that my mania had distinct levels helped me to identify
differences between the stages of mania. When I was at my dentist's office waiting for my daughter, I was in very poor cognitive condition. In an instant, my mind placed me in a state I'll call "therapeutic mania." In that state my memory improved, my energy increased, and everything that had been a problem for me earlier was no longer an issue. It seemed a perfect solution for my mental disabilities at that moment. Aside from those improvements, I felt no different. There was no apparent sacrifice of abilities or memories. The mania was very subtle and beneficial.

At Pinecrest, during the night of my interaction with the big machine, I succumbed to a new level of mania I'll call "emergency mania." After describing it to my friend Tim, he mentioned that it sounded just like something he'd experienced when he was in an automobile accident. I'd forgotten that I'd also had a similar accident experience. The more I recalled about that event, the more I realized that he was right, hence the name "emergency mania." In this second level of mania, most of my mental function was either partially or completely disconnected, and certain senses were amplified to compensate for the loss of mental capabilities. In an emergency, one heightened sense can compensate for countless lost abilities and memories. In that state my mind operated extremely fast due to the many things that were disabled. The effect was like all traffic suddenly disappearing from a busy freeway, leaving all lanes open as my personal speedway. There was a sense that all of the day-to-day chatter of my mind had been shut off. My mind was cleared to allow me to make rapid-fire, life-saving decisions. The quality of those decisions suffered because of a lack of broad knowledge, but in an emergency, it is more important to make many decisions fast and suffer through a few bad ones than it is to wait too long for one quality decision and risk injury or death.

Emergency mania could be compared to what an adrenaline junkie experiences when he BASE jumps or what professional athletes experience when they are in the "zone." Psychologists call that mental state "flow." While in that level of mania, I felt euphoric. I felt no fear or worry, my instincts and senses were crisp, my energy was limitless, and my confidence and enthusiasm were boundless. Without doubt, people in that state are going to like it. You'd have a hard time convincing them that there was something wrong with them. In fact, because of their changed perception, it may be impossible for them to recognize that there was anything wrong. That lack of insight is referred to as "anosognosia," a condition in which the person suffering the disability is unaware of the existence of it. Unlike denial, which is a defense mechanism, anosognosia has physiological roots in the brain. When those people in my home were trying to tell me I was sick, I had no clue what they were talking about—
I felt
great.