We Will Never Talk About This Again: Recovery From a Complex Illness

Fifty years later, as my mother tells the story it brings tears to her eyes. At the time, she readily entered into a pact with my father that would have major consequences in the life that had nearly ended that night – my life. In the car, returning home from a hurried trip to the emergency room where the contents of my stomach had been pumped out, my mother and father agreed that the best way to handle this affront was never to talk about it again. “What else could I have done?” she asks now.

I don’t remember that conversation or the ride home. I do remember, clearly, taking the first handful of aspirin. I counted out 12 – that’s how old I was – then added a few and swallowed them down with water in the bathroom glass. I wasn’t crying or angry – I just felt empty. I would take these pills and go to bed; sleep would painlessly take me far, far away. It would be that easy.

When Mother came in to say good night, I was mostly asleep but moaning with a terrible headache. She naively went to get me an aspirin to cure the headache; and an empty bottle revealed its cause. Apparently I had gone back for more; although I only have vague memories of it.

She immediately went to get my father who happened to be home and sober. Faced with this assault on his authority, his logical response was to grab the paddling stick – a rod of bakelite that always waited on top of the refrigerator – and storm into my room to punish me. As he pulled me up out of bed, the precious dime-store necklace a special boy had given me broke and faux pearls scattered across the linoleum floor of my bedroom. I will always cherish the mental picture of Dad on all fours desperately trying to gather the pearls with the bakelite – a clear expression that he really did care about me.

The rest of that night and the period following it are a blur in my memory, but I know that my life became very busy. Although Mother says she did not orchestrate it, activities began filling my every hour. My older brother took me to baseball games – the Dodgers had just come to Los Angeles and I became a lifelong fan. I joined Job’s Daughters – eventually becoming Honored Queen. I became the vocalist for a Glen Miller-style high school band at the Boy’s Club. And I was a regular in the plays of the local children’s theater group. I loved all of it – and excelled at school, too. Never a quiet moment to sit and think; always on the go. It is easy to see the seeds of my addiction to work and activity. And, of course, never an opportunity to consider what had led me to take those aspirin that night. So I forgot it – or rather normalized it so that it didn’t seem odd or worthy of consideration. “She was just looking for attention” I remember thinking or hearing. So the parts of me that wanted desperately either to be heard or to die accomplished neither and retreated farther inward.

The busy adolescent grew up to be an accomplished professional, putting a fast-paced career first, then staying at home to raise two children. Always on the go, volunteering in the community, supporting her husband’s career, developing a national reputation in her field, traveling and publishing widely, and being elected to the local school board. Then, quite suddenly, as I turned 50, the successful, fulfilling, very public life began to unravel in the face of a mysterious and debilitating illness.

The first attack felt like I had been struck suddenly with a terrible flu – weakness, fatigue, nausea, trouble with balance and walking. It was still so bad the next morning that my husband took me to the emergency room. Tests were inconclusive, but we were referred to a neurologist who did more tests. Eventually he became frustrated at not finding a diagnosis and prescribed Prozac to deaden the symptoms and get me out of his office. The symptoms were subsiding on their own, and I was so insulted that I never filled the prescription or returned to his office. After a few weeks, life gradually returned to normal. Another major episode about 18 months later was a little less severe, but lasted longer. This time, a different doctor told me to get more rest – which completely dismissed the reality that I was the primary source of income for a family with two teenagers and a husband starting up a small business.

The third time the illness hit, it felt more like the hard drive in my brain’s computer crashed and re-booted itself. This time it wasn’t as physically debilitating to start with, but it got worse instead of better over time. The symptoms included a growing lack of stamina and equilibrium, weakness in my legs, and periodic “events” like small seizures that could leave me unable to speak or walk or both. After a while, when I walked, it was slowly and with a cane, and longer distances came to require a wheelchair. My short-term memory and other cognitive functions were periodically impaired as well.

Through an influential friend who was concerned that I wasn’t getting appropriate care, I gained access to the world-class neurology clinic at the University of Southern California’s University Hospital. I was also seeing a psychologist to help me cope with the necessary adjustments to my lifestyle. A holistic chiropractor and a Chinese acupuncturist rounded out the team I assembled to help me deal with the symptoms and find their cause. But, despite their skills and caring, relief was sporadic at best and the impact of the symptoms grew more disabling.

Finally, in early 2002, having already left the School Board, I took a medical leave from work. I didn’t know if I would ever work again and I was determined to find out what was happening to me. I wanted answers: Is this something I can fight? Or do I need to gracefully accept a chronic disabling condition? Will I ever get to hike again? Will I need to travel only to wheelchair-accessible locations?

I am forever grateful to my tenacious neurologist, who never gave up on the quest to solve the mystery and give me back my life. She even understood the value, and accepted many of the recommendations, of my “alternative” providers. I was tested for many illnesses like multiple sclerosis, myasthenia gravis, lupus, and heart trouble. She came to suspect a seizure disorder and tested me twice, inconclusively. But some seizure medications gave me relief some of the time; so, as my leave began, I was put on telemetry again. After six days of being hooked up to all those electrodes, they had enough data and turned off the machines. I waited expectantly for the doctor to come in to give me the diagnosis and the plan.

She sat down on my bed and told me that my EEG showed no abnormal brain activity even though it was clear I had had several “events.” She explained that this sometimes happens in intractable cases like mine, and that it usually means that there is some hidden psychological trauma that the body is converting into physical symptoms. I laughed, reminding her that I had been screened by social workers and psychologists during the testing I had endured, and that we both knew that this couldn’t just be “all in my head.” She agreed that the symptoms were quite real – and reiterated that they were not caused by any abnormal activity in the brain that she could measure. She asked me to think again about anything unusual or traumatic in my childhood.

Finally, I mentioned the suicide attempt when I was 12. I made light of it, saying “children do that sometimes.” Clearly, I thought, nothing as insignificant as that could have caused this disabling condition so many years later. Her response was gentle and firm: children don’t “just do that.” She told me that I would likely find the answer to my mystery illness when I discovered and faced whatever had been bothering that 12 year old. She turned over primary control of my case to the psychologist with whom I already had a trusting relationship, who turned out to have highly relevant skills and experience.

Thus began my long journey back to health. I have learned a lot since the day I got my diagnosis. I have learned what a conversion disorder is and that it can bring on pseudoseizures. I have learned about the range of dissociative disorders and the amazing power of dissociation as a survival tool.

I have learned that physical and mental health are so intertwined that they are inseparable. That was easy for me to accept as a concept, but much harder to accept as a diagnosis. I found the stigma of a psychological diagnosis to be even greater than that of a seizure disorder. Whereas I had been loathe to tell anyone that we suspected seizures, I now longed for that seemingly simple and concrete diagnosis. It was months before I would share with anyone other than my husband what was really going on.

I have also learned that thoughts about how to kill yourself – “suicidal ideations” the professionals call them – aren’t part of every day life for most people. That came as a real surprise because they always had been for me. I thought it was perfectly common to consider the various paths to oblivion that were available to me at any point in the day. Mostly, I didn’t plan to act on them, but I was acutely aware of opportunities to find eternal peace as they presented themselves. A bus barreling down the street close to the curb I was standing on raised the question of the best timing to assure that death would be quick and certain. A curving freeway overpass often prompted a vision of the car sailing off into the nothingness. Sometimes the pull of the void beyond a bridge was so strong that I had to focus with all of my strength to hold the car on the road. The unaddressed desire to kill myself showed up in other ways as well. What a blessing it is now to have available for other pursuits all of the psychic energy and creativity that used to go into fear and suicidal contemplation.

I have learned that memories – especially traumatic memories – are stored in the cells of the body as well as in the mind. I have learned that as old trauma is released, healing can take place. In therapy, my childhood memories began coming back with full physical sensations, as if I were re-living the episode. It would be gut wrenching and exhausting, and the next day I would be able to walk up the stairs a little easier. Soon, I was able to walk around the block without a cane. The importance of this positive feedback from my body cannot be overstated. It helped me answer the misgivings that I might be making the whole thing up. It helped us to know that we were on the right path to healing and wellness. And it gave me the courage to keep facing discoveries of things I didn’t really want to know.

I know that I am extremely fortunate to have had incredibly committed, skilled, and courageous professionals – and the excellent group health insurance that paid most of them. I realize that many people, who are not as fortunate as I, go through long periods of their lives overmedicated, misdiagnosed, and suffering from strange maladies. Some clearly go to their graves without being able to create health in their lives because they get stuck in a medical model that separates body, mind, and spirit as if they were unrelated domains. Instead of this fate, I can once more hike up to lakes I had thought I might never see again, and travel to places like Peru, where I climbed all over Machu Picchu without worrying about a wheelchair!

Just as the accurate diagnosis was made possible by the neurologist’s tenacity and skill, my healing has been nurtured by a gifted psychologist with a deep commitment to the natural quest for health and wholeness. She has supported me to keep functioning in my professional world, even while we have been doing intense and difficult work in therapy. She has kept the focus on healing and helped me to stay grounded in the here and now, even as we have allowed my hidden past to come forward.

The process has made me acutely aware of the folly of making assumptions about people, based on how they present themselves. We do not know what may be going on in the life of the person who sits across the desk or the meeting table from us.

My mother’s question is a good one – what else could she have done? What else could other adults in my life have done? So much has changed since 1959. Mother now says that she “should have let me talk about it.” Yes, we must listen to our children, even when we don’t want to hear what they might say and are not sure what to do. But where to turn for help? Mother had no easy access to a counselor to help us. Is that any different today? We need to make sure that mothers and adolescents can find the help they need.

Today, the Emergency Room personnel would probably ask different questions when presented with a 12 year old with a stomach full of pills. But I wonder how differently they would act. The people who treated me may have known the family, since my grandfather was a physician and had practiced at this same hospital. It must have been easy to become party to the denial, not wanting to believe that untold trauma existed within such an upstanding, middle-class, white family. And if they had reported us, what would the “system” have done to the rest of the family, including my six siblings who were not being hurt in the same ways? What would it do today? Was it better for me to wait and deal with the consequences in my 50s? Perhaps asking these questions can help us find sensitive and nuanced answers.

It is now quite clear to me why “we will never talk about this again” was a logical response from my father to his first-born daughter’s suicide attempt. At least in part, he did not want to be held accountable for failing to protect me from his parents – the very people who had so damaged him that he had turned to alcohol to deaden the pain. He could not bear to face what he had never acknowledged. And he was lucky enough to die before my past came calling – back when all that was visible was the successful wife, mother, and professional. But he should have known from his own experience that you are never really free of your past until you acknowledge and face it. Your body always remembers.