And for you, sir???

I have truly come to dread these words. Each time we go to a restaurant I have to explain myself all over again, in excruciating detail, in hopes of finding something that I will be able to eat. Sometimes a glance at the menu will tell me the effort will be futile and I settle for a glass of water or pick at an undressed side salad for show; other times there is hope and the negotiations begin and I cross my fingers that the waiter will faithfully relay my requests and that the kitchen staff will be adequately cautious, and, of course, that I have considered every possibility that could be overlooked. But still, I dread the moment when the waiter turns to me.

Perhaps I should explain. For me food is an incredible trigger.

Of course sodium is a problem – it seems to cause the long, lingering episodes, not so severe in terms of paralysis, but more of a deep weakness, a sensation akin to all of my muscles being on the edge of cramping but never coming to a fruition that might bring relief, while all of my joints ache to pop as though they are being compressed or stretched to their limits. The sodium episodes come on gradually; at times they even wait for the next day, but take days to fully abate. A sodium slip-up is tricky, and at times hard to trace; it allows us to leave the restaurant full of confidence only to emerge later to taunt us for our momentary lapse or lack of vigilance.

Sugars on the other hand effect me immediately. A sugar episode comes on like a wall crashing down on me, crushing me to the floor. My eyelids droop, my speech slurs, my head lolls, and then I am down for the count. Once I am down it rises like a tide, stilling my feet and then moving up my legs; my breathing becomes labored and my pulse falls slack. During the worst episodes my eyes begin twitching uncontrollably, my eye muscles unable to hold them still, and my arms fall utterly limp. My mind follows suit, unable to figure out how to form the words I need to speak. Obviously this is something to be avoided, and if it were as simple as avoiding sugar itself that would be easy, but it is more complicated than that. All sugars do this to me. I haven't had a piece of fruit in eighteen months. A glass of milk is right out. An especially sweet sweet potato will drop me, but an average one is okay. Carrots are borderline. My wife has become my official food taster, leaving me feeling like a particularly paranoid monarch.

Sugar-free foods are not actually sugar-free as they are made with sugar alcohol, which is still essentially a sugar. And of course alcohol is a no-go as well. We have to make sure potatoes and pasta are not boiled in salted water, that any butter used is not salted butter, that spice rubs contain no salt, and of course marinades and sauces are pretty much eliminated. Bread and cheese are long gone, and I can barely remember soup. This would probably be a lot easier if I weren't a vegetarian, but, alas, I am. I refuse to allow this to take from me the ethical position I have held for the past twenty years; it has already taken enough.

Sometimes it is enough just to eat, to have calories that will boost the old blood sugar level, to bring on a minor episode, though this usually happens only if I have gone just a little too long without eating. This, at least, is better now that I have found a reasonably effective management protocol; back before I was diagnosed the only way I could function was not to eat. Each night, right before bed, I would at last nibble a meager meal – perhaps five hundred calories – and hope to sleep through the episode, and then wake the next morning and dig up the strength to make it through another day without food until I could at last lay the day's tasks behind me and eat before once again sleeping. This was a frightening period, to have to make the choice between eating, and triggering episodes for which we had no real explanation, that were doing who-knows-what to my body, and not eating, which is obviously not a sustainable strategy. We had no idea if the episodes were doing irreparable harm, while the not eating certainly wasn't helping me. The weight was falling off of me and I grew more gaunt every day.

I lived like that from May 2008 until October 7, 2008, the day not eating began to trigger episodes as well. My wife was at a dental appointment; I was outside with our then two-month-old daughter. I began to feel my body go slack and I began begging my body to hold out until my wife emerged. I found a bench and waited and watched, waited for my wife and waited for my body to give out. At last Katherine emerged; I gave her the car keys and followed to the car, the sleeping Matilda still in her sling around my neck. When we reached the car Matilda was shuffled into her car seat and I was helped into the back seat. Our wee daughter, now awake, began to cry and I tried to sing to her, but could no longer form words; I tried to stroke her, but could no longer hold myself up. I slumped to the floor and reached up a arm to offer her a finger to suck on; I started to hum even as I began to cry -- tears from the pain that was taking over my body, tears of confusion over what was happening to me, tears brought out by my daughter's cries and my inability to do anything to help her because my body was no longer mine.

That was the day fear moved closer to terror; eating was destroying me and not eating was destroying me. The next day I took a leave of absence from work; a week later I was back at Johns Hopkins. At this point I had already lost thirty-plus pounds; I would go on to lose ten more before we had the first inklings of a diagnosis just days before Thanksgiving.

To say my relationship with food has become somewhat fraught is perhaps a bit of an understatement. I have gained back some weight; I have relearned how I approach cooking; I do without some of the things I had for so long taken for granted. Sometimes I slip up, but medication mitigates the most extreme components of episodes. I bake my own bread; I have improvised new recipes. I no longer fear food, even if it is more of an expediency than a pleasure these days. But still I dread that moment when the waiter turns to me and asks, "And for you, sir?"

Outside...

This morning, as I was eating my usual breakfast of sodium-free, sugar-free Shredded Wheat 'n Bran with unsweetened soy milk, my mother-in-law commented that I seem to have gotten a bit of a tan on my arms; I suppose I have, but I am still rather pasty. She then reminisced that when she first met me -- nearly twenty years ago -- I had one of the darkest tans she had ever seen. I have never sunbathed; I just used to spend a lot of time outside: back then just running around, more recently gardening, working in the backyard, bicycling, whatever. That is until the onset of HKPP. Now just a bit of sun shows on me, not that I have been getting much as of late.

For the past two weeks my wife, my daughter, and I have been in Kentucky visiting my wife's family, and my time outside has been even more limited than usual. It has been in the 90s almost every day, with heat indexes I can only imagine, and nowadays the simple act of sweating is somewhat dangerous. You may wonder why...

Well, sweat contains electrolytes, and one of those electrolytes is potassium. For those that don't know much about HKPP, the hypokalemic part of Hypokalemic Periodic Paralysis means "low potassium." And with my particular flavor of HKPP my potassium doesn't even have to go very low; the low end of normal is nearly catastrophic for me. Hence you can see the problem with sweat. I don't even have to work up a vigorous sweat, just the ordinary wicking of perspiration off of my skin in order to maintain an appropriate body temperature in this weather is enough to have an effect. The steady loss of potassium in my sweat leaves me playing potassium catch-up all day long, a game that has a definite toll on my body -- sometimes immediate, sometimes a little ways down the road. Even with the generous use of oral potassium prolonged sweating leads to a yo-yo effect which leaves me more sensitive to any of my other triggers and, at the least, entirely drained by the end of the day.

This is the sort of thing I worry about now. Whereas I used to check the weather in order to determine what I should wear, or if I should bring an umbrella; now I check to see if I should even go outside.

The outside world is a dangerous place.

Looking in a mirror...

It has been twenty-eight months since I first started feeling ill, twenty-six since I first realized there was something seriously wrong with me, twenty since my first hospitalization, fifteen since diagnosis, eight since we finally made some real headway with medication management, and three since I have started to feel like myself again, at least at times. Along the way my family and I have traveled up and down the east coast to see doctors, to visit hospitals, to look for answers, solutions, advice, and sometimes even just a bit of hope. I have long ago lost count of the doctors I have seen: the internists, the gastroenterologists, the endocrinologists, the neurologists, psychologists, psychiatrists, and cardiologists. I have had enough blood drawn over the past two years to thoroughly exsanguinate me several times over, had enough needle-pricks to get me into the pincushion hall of fame.

Through all of this, and all of the doctors shrugged shoulders and pop psychology I have known that there was indeed something very wrong with me physically, yet at the same time I have always harbored some small degree of doubt, a little uncertainty born of the unpredictability of this disorder, of the reality that I never can quite pin down exactly what it will do to me, of the fact that I have never seen anyone else experience what I experience.

That is until today, when I saw this video, and felt so completely that I was looking in the mirror.

I am sure the lingering doubt will always remain with me, returning with each episode for which I cannot pin down a cause, and with every episode I do not have even though the same circumstances have triggered one a score of times before. But today, at least, I recognize myself in this mirror, though the fact that I do see myself in that video -- the paralysis, the labored breathing, the vacant stare -- reminds me that I hardly remember the me I once knew.