People don’t understand the ways that a chronic illness is different from an acute one.  It’s hard, until you’ve experienced it, to grasp the nature of the flux of day-to-day symptoms and management.  People don’t understand how well we have to know ourselves, how we have to track our changes.

We’re expected to be our own mind-readers, to know when things are moving up or down.  We keep journals and calendars and second-guess our feelings.  I try to stay ahead of myself, but sometimes it is only through the worn-out glasses of hindsight that I am able to say, man, I was crazy last week.

But even harder than keeping track of my own moods, I find, is knowing what to do when I realize that I am flailing or sinking or rising too quickly.  I can see that I need help, but I don’t know how to ask for it.  I never know how to ask for it.  I’ve tried, once or twice.  But I’m bad at being explicit—it always comes out jumbled and obtuse.  I can’t find the right words, even when I’m with my best friend or my psychiatrist.  I don’t know how to tell people that I’m hurting, that I need a rescue.

***

I’ve been at a conference all week.  On Monday, we arranged ourselves to have a picture taken.  Because I am short, I naturally got punted from the third row into the first.  There, I was placed beside an older man.  He turned to me and spoke with a European lilt, asked if our weather is always this nice in November.  I told him that is generally is, and we chatted further for a few minutes.  After the pictures were done, we started to walk away—he asked my name, and I looked down and commented, “Oh yes, I forgot to put on my name tag today.”

And he replied, “Oh, I couldn’t have seen it if you did.”  Then, he reassembled his cane, grasped the arm of a nearby man and walked off, yelling behind him, “Oh, I’m speaking tonight!”

***

He was amazing to watch; he started out his presentation by commenting on his blindness.  He has retinitis pigmentosa, a genetic degenerative disease.  He was diagnosed in his thirties with degenerating sight, and now can see almost nothing.

But more amazing to me than his adaptations and obvious intelligence—which were nothing less than incredible—was the ease with which he asked for aid.  He was unobtrusive and unapologetic—if he needed guidance, he simply asked for it.  I watched as he passed himself between colleagues, grasping for their arms with an ease that was simple and beautiful.

I wish for this ease; I covet it with the most jealous and evil parts of my soul.  I wish for the grace to ask for help, I wish for the suspension of ego that would allow me to say, “Here I am, lost.  Please take me somewhere else.  I need you to guide me.”

I yearn to someday be able to take someone’s arm and say “Please help.”  But more than that, I worry I will never be able to.  And that, I think, scares me more than anything else about my disorder.