Saturday, September 29, 2007

In the Beginning Was Dysautonomia

(Image changed 10/21/08) This is the first post in a series telling the story of my illness. Links to the other posts in the series can be found in the side bar.

I spend a lot of time lying down. It’s a fatigue thing. It’s a weakness thing. But first and foremost, it’s a blood pressure thing. Unmedicated, mine swings about wildly, running high and plummeting with sustained upright posture even until it is impalpable. By third grade I knew how to recognize when I was going to pass out and to prevent it, so I haven’t fainted that many times. Interestingly, the brains of some people with this problem re-set the pass-out threshold to a lower point, enabling them to remain conscious at a blood-pressure level that would put a normal person out cold on the floor.

I was not diagnosed with this dysautonomia until I was 25, but my memories of it go back to at least age 5. I awoke not feeling well on the morning we were to leave for a road trip to Arkansas. I got up and started down the hallway to tell my mother . . . then I was looking up at her. “Where am I?” I asked, classically. I was on the floor.

The doctor had no specific explanation; he suggested that I had been temporarily weakened by a virus. Maybe I did have a virus that day; maybe that was the beginning of my problem. But my memories of discomfort with upright posture are so early and pervasive that I can’t tell for sure whether they predate that incident or not. I have never really been comfortable sitting for long periods or standing even for short periods.

We were forever lining up in elementary school. It was a torment unto me to stand there waiting to be allowed to walk, the physiological stress building while Mrs. Evans demonstrated how she had been taught to shake her hips in finishing school. An endless variety of delays kept us suspended on our feet and me desperate for movement to return blood from the legs to the heart. Many childhood pictures show me squatting, leaning, bending forward while sitting, unconsciously trying to help my body get blood to my head. When I look at old pictures of myself standing or sitting, I can remember perfectly the uneasy, unpleasant feeling in my trunk and limbs. I now recognize it as a sign that my body is having difficulty getting blood where it needs to go. Back then, I didn’t know that everybody didn’t feel this. To me it was just the way it felt to stand or sit.

In third grade I passed out again. My family was participating in a health study, and we each had to have a fasting blood draw. I sat on the edge of a gurney, my feet dangling in the air, and watched as the technician cinched and swabbed my arm. I don’t remember any pain or fear with the puncture. I just watched the tech’s face as he chatted away. The sound stopped, but his lips continued to move. My consciousness hovered airily for a moment, fascinated: He’s talking and I don’t hear anything. Television static slowly consumed my vision. Suddenly I opened my eyes to see several concerned medical types standing over me. From the doorway, my mom smiled and waved encouragingly.

They let me rest and gave me a blueberry muffin and orange juice. I said goodbye to my sister, who had to leave for school and was jealous that I didn’t. Then I produced blue-spotted, bright-orange vomit and thought I would rather be in school. After this incident I knew to sit or lie down quickly when I saw static. I didn’t pass out again until I was in college, though I had some close calls.

But I did suffer fatigue—lots. In late high school, I finished the school days desperate to lie down. By pushing I managed to do a lot anyway, but with a struggle my classmates never had. This doing-it-anyway was just one of many ways my undiagnosed, ever-present dysautonomia shaped me. I’ve always loved swimming; the pressure of water on the surface of the body, it turns out, supports circulation, making water more comfortable than air for someone like me. I think, too, the dysautonomia’s persistent, internal demands on my attention made me more introspective and contributed to my social insecurity by preventing me from ever being forgetful of self. It also strengthened my wariness of the social maneuverings of high school, so many of which were carried out in contexts I couldn’t be at ease in—standing around the school parking lot at lunch, standing at parties, standing at the favored gathering-place on the seawall on weekend nights.

In college I took drawing classes where we stood for two or three hours. I asked a classmate once, as we left the studio, how he felt after class. He looked at me funny. “I mean, are you incredibly tired?” “No,” he said, “not really,” and walked briskly off. I probably slept until my next class. I alternated vertical activity with horizontality—on the grass, the floor, public couches, my bed. I was just beginning to suspect that something was different about me, not right.

In a way, our respective futures were captured in that moment. He went on to be a professional dancer and choreographer, and I—well, I have spent a lot of time lying down.

The next post in this series is "And Then My Trouble Began."


  1. Dear Priscilla,

    Another Bahá'í friend of mine pointed me to your curent state of illness. Its symptoms sound all too familiar to me, having undergone something similar myself on a daily bases for many years, but the chances for you to recover is 100% (not a joke!).

    Also, I almost lost my father to such an illness, be it that he was in a more advanced stage before being 'saved' by who is now our from certain death 5 years ago. Apparently, Bahá'u'lláh had other plans than death.

    If you seek a "competent physician", I can recommend you mine. You deserve a life of health and vigor. Don't hesitate to email me at ricolicious at gmail dot com.

    Many blessings, Rico

  2. Thank you, Rico, for your blessings and for visiting my blog. I want to respond gently to your comment, but I’m not having gentle feelings about it. So, let me tell you a little of where I’m coming from.

    The only thing 100% guaranteed to any of us is death. That’s not pessimistic; it’s just our situation. I have had autonomic symptoms for over thirty years. They have never gotten better; they have gotten much worse. And that is not my only trouble. I have gotten better at managing my dysautonomia and I have gotten good drugs. (I love my drugs.) But, despite years of healing work, I continue to be radically limited, and nothing seems to clear the way for me to get stronger. I don’t know what will happen in the future.

    I don’t think health has much to do with deserving or not. Lots of people, billions actually, do not get the good things they “deserve.” Life is not a synonym for justice. Hope that denies this reality is cheap and, frankly, useless to me. I’m interested in other species of hope, the kinds we can share with each other in our shared place of not-knowing.

    Please forgive my directness if it stings; this is a subject which matters to me.

    I’m glad to hear you and your father have gotten the medical help you needed.

    My blessings to you, as well,



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