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Near-Death, Trust, & Transformation

Image: The Tetons and the Snake River by Ansel Adams, from wikipedia

Image: The Tetons and the Snake River by Ansel Adams, from wikipedia

In my 29 years of life, there have been 3 times when I came close to death. Once was when I was born, umbilical cord knotted and wrapped around my neck. Once was when I had eclampsia while pregnant with my son. And when I was 12 years old I almost died of a brain infection.

I didn’t know at the time how I had about a 50% chance of survival. Hell, my mother didn’t even know. My father did a good job of hiding it from the both of us. I’m not sure I agree with his decision to do so, but I was 12 and at the same time my father’s adoptive father was slowly wasting away with dementia and my father was sleeping 4 hours a night, tops, spending his days watching over me, praying I wouldn’t have a seizure and die in our living room. Praying his father wouldn’t have a seizure and die at the nursing home that was over 30 minutes away from our house. Maybe there was only so much he could take. Maybe helplessly trying to reassure my mother that I would probably not die wasn’t something he could do with honesty.

I first realized something was wrong with me when my family was on our way back from vacationing at Yellowstone National Park and the Grand Tetons. We’d driven across country both ways, and on our last night on the road, trying to fall asleep on a cot in a hotel room in some Midwestern city, I realized I couldn’t sleep because my right leg wouldn’t stop moving.

It was the strangest sensation – the movements didn’t come as a surprise – I felt them long before I made them. It was as if something was whispering to my brain to move my leg and no matter how hard I tried not to, eventually I would obey. Small twitches at first, and only when I was tired, but as the summer wore on they became more frequent, more exaggerated. They moved to my shoulder, my arm, and eventually my hand. They moved to my face, my tongue. My speech became difficult. My legs were a mess of bruises. I could barely write.

I think my parents were in denial. I seem to recall my grandmother on my mother’s side sitting them down, explaining that there was something terribly wrong with me and I needed to go to the doctor. I remember everyone looking in the Dr. Spock book, pointing out the entry on Saint Vitus’ Dance.

They took me to the pediatrician the next morning, and by noon I had been admitted to Children’s Hospital. I knew there was talk of a brain tumor. I knew something was very, very seriously wrong, and became even more aware when I was asked if they could parade in medical students to observe me. I agreed, and spent the next two days with a constant barrage of wanna-be doctors staring at me, asking questions to everyone but me, peering at my charts. By the end of the second day I couldn’t emotionally handle it anymore and retracted my permission.

By then, the doctors had a fairly decent guess as to what I was suffering from: Sydenham’s Chorea, an infection of the basal ganglia. I must have had strep throat, they explained, that went undetected and then turned to rheumatic fever which also went undetected. I was told that in a certain light I was lucky – when the illness made its next stop on its tour of my body it could have picked my heart, leaving me with a heart murmur for the rest of my life. Instead, it had traveled into my brain, robbing me of all fine motor control. There was nothing we could do but wait it out, nothing we could treat it with but time.

However, they wanted to do an MRI on me, just to be 100% certain I didn’t have a brain tumor. Usually you aren’t put under for an MRI, but the nature of Sydenham’s Chorea is such that, while I was unable to stay still while conscious, once asleep all the movements ceased. So they sedated me, and it proved to be a tragic decision.

When I awoke, I was literally thrashing uncontrollably. I had to be cuffed to the hospital bed by my wrists and ankles so I wouldn’t hurt myself. Something in the sedative had made everything a million times worse. I’d been given a drug cocktail that my father spent the following months poring over, trying to figure out what had gone wrong. Eventually my thrashing calmed somewhat, but in almost every other way I was ten times worse than before. I could no longer speak, I could barely walk, and the little amount of writing I had been able to do had been robbed from me.

Once I was no longer in immediate danger of throwing myself to the floor in a fit, though, I was sent home. What else was there to do now, but wait the infection out? While Sydenham’s Chorea would often resolve itself in 1-6 months (I was technically already past month 3), it now seemed I would have longer to wait. I was given a prescription for haloperidol/Haldol (usually an anti-psychotic, but in this case used for its muscle relaxant qualities), and a prescription for penicillin.

My parents threw themselves completely into the task of caring for me. My father took night shifts at his job. My mother must have left work early every day to come home and take care of me. My friends wrote me letters since I couldn’t talk on the phone, and I received card after card in the mail from family, friends, and members of my parents’ church. I responded with typed letters when I could.  For years afterward I kept every last piece of correspondence in a hatbox under my bed.

One of the worst parts of the whole experience was the sheer boredom of it. An avid reader, I was deeply upset when I realized that moving my eyes along a line of text fell under fine motor control. My mother, a natural born performer, would read a chapter of Jane Eyre to me every day, but otherwise I was unable to read a single book during my convalescence. This was all pre-Netflix and Hulu and HBOGo, too – sometimes my father would rent a movie for me, but much of my day was consigned to gazing out the window and waiting for the mail.

The one thing I did come to truly look forward to – and I have no idea how often this happened as my days passed in a slow motion blur – was visiting my grandfather (Pop-pop, as we all called him) in the nursing home as he lay dying of dementia.

That statement probably sounds morbid, but Pop-pop and I understood each other. We were both fiercely independent people whose bodies had betrayed us. We were both bed-bound and mostly helpless. We both clearly disliked our utter reliance on everyone but ourselves.

Many people stared at me on the rare occasions when I would go out, demanding to know why I didn’t speak, asking a litany of questions, pitying me. I hated it all. Pop-pop, though? He got it. The most he ever did was turn to my dad once and say “She doesn’t say much, does she?” and we never spoke of it again.

The thing is, we didn’t have to speak to know we had a shared experience. Up to that point Pop-pop and I hadn’t been close, but when his mind was being ravaged by dementia and mine dulled by Haldol and infection, we found common ground and comfort with each other. My father once told me I was one of the last people he forgot. So in a way, I was lucky to be so sick then. I hope I brought him the same feeling of being less alone that he brought to me. When he died, his was the first funeral at which I truly cried.

As the months wore on, I grew more and more impatient, more and more bored of my days lying on the couch, more and more weary of endless visits to my neurologist. I also felt strongly that being on as high of a dose of Haldol as I was had kept me helpless longer than was necessary. One day, when my father handed me my medication for the day, I took the penicillin, but handed him back the Haldol and shook my head. He was silent for a moment, but then simply said, “okay, Meg,” and cut the pill in half. I took the half pill, and without asking my doctors, he and I slowly weaned me off of the Haldol.

It might sound crazy or ill-advised or irresponsible that my father was willing to cut back on my medication without consulting anyone but me, but I think he knew that I knew what my body needed. He spent every single day with me. He watched me, unable to do anything for myself. He was my fiercest advocate and defender throughout the entire ordeal. As we cut my medication back, some of the movements did return, but I also quickly began to regain my ability to speak. It felt like a good trade.

When the following spring I was finally almost ready to go back to school, he and I had a meeting with all of my teachers and the school principal, vice-principal, and social worker. He went into the meeting and told them exactly what they would do for me, and brooked no argument.  We trusted each other completely by the end. We still do.

Before my illness I’d been awkward and socially maladapted, often saying things without thinking, not caring what those around me were interested in or wanted, talking too much, listening too little. Almost counter-intuitively, being forced into silence for 6 full months made me more able to be silent once I could again speak. I reflected on how I’d not been as good a friend as I could be, always wanting to talk about or do what I wanted to talk about or do at the expense of others. When I returned to the world after the Chorea, I became so much more socially graceful. I still had (and have) work to do, but the change was remarkable.

I’ve re-created that experince of silence and isolation purposefully since then in the form one summer of a vision quest and many times in the form of writing retreats. Some days I even think of the experience like that of the shamans who go into the forest and have visions of their bodies being taken apart, devoured by demons, and spit back out to be made whole once more.

There have been other after-effects of the Sydenham’s Chorea that I still feel. I have some permanent brain damage – I can’t always entirely control my facial expressions, so whatever I am feeling is plain on my face. When I try to smile, unless I truly mean it, I can only do so with half of my mouth. When I’m particularly exhausted, I still feel that whisper in my body to move my right leg. It will always be with me, but I guess I don’t see that as a bad thing. My brain may have battle scars, but my mind is perfectly clear.


Margaret Bashaar’s poetry has been collected in 2 chapbooks – Letters from Room 27 of the Grand Midway Hotel (Blood Pudding Press, 2011) and Barefoot and Listening (Tilt, 2009) as well as in many literary journals and anthologies. She edits the chapbook micropress Hyacinth Girl Press, attempts to repair antique typewriters, and spends far too much time at haunted hotels in coal mining towns for her own good. She’s only been suspected of being possessed once and hopes to someday become a rogue taxidermist. Find her on Twitter – @myhyacinthgirl


3 thoughts on “Near-Death, Trust, & Transformation

  1. Pingback: Why Joining The Gym And Getting My Butt In Gear Was An Amazing Decision |

  2. What an amazing and beautiful story. This is truly getting me to think about how fibromyalgia and CFIDS changed me– not for the worse, those changes are obvious, but for the better. I, too, am more thoughtful. I know that I don’t know what struggles others bring to the table, so I’m more compassionate. I cherish the days that I can do more physically but use the days that I can’t to travel in my mind and explore the energies that can’t be seen.
    Thank you for this essay. It’s made a difference to me.

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