Please Enter User Name and Password

Yesterday afternoon I had one of the most frightening MS moments (or rather, hours) in my illustrious MS career thus far.

At about 2:25 I sat down at my desk to start work, powered up the computer, waited for the login screen, took a couple sips of coffee while waiting. The user name and password came up, I lifted by hands, and then . . . nothing!

I could not remember my user name to save my life! I had no idea whatsoever. I have been doing this job for 17 years, I have been using this particular system, and user name, and password, for at least 4 years. And yet suddenly I had no idea in the world what to type into the field.

At first it was a Wow, that's weird sort of moment, but as the moments passed and nothing clicked, as the moments passed and became minutes and then a quarter hour and then a half hour, as the moments passed and every stab in the dark I took at typing in a likely user name failed, weird became frustrating, then maddening, then terrifying.

I suppose this is difficult to convey to anyone who has not experienced it. I suppose we have all had these moments where we just suddenly draw a blank--a name, a date, a memory--but of course such information temporarily misplaced soon pops back, and we chuckle and proceed.

Here there was no resumption, no revival, no retrieval, but only a quickening of the heart, a rising heat on the brow, a growing stuffiness in the brain, a dawning sense of panic.

The minutes marched on, ever away from revelation. The blank slate became if anything blanker. I began to search next for someone I could call, a coworker who might provide some sort of mnemonic, a phrase, a hint.

Now I had learned long ago that sharing ones troubles with MS among managers or supervisors in ones workplace is not the best idea. The sympathy that one somehow automatically anticipates does not in fact generally exist. There is, however, a friend and coworker who has been helpful in the past, who moreover will keep my terrible secret of incompetence, and so I sought now to locate her telephone number.

The idea that my current state of distraction could be further compounded had not occurred to me--until, that is, I found that I had not the slightest notion of where this person's phone number might be. Most certainly I had it. Somewhere. But where? I have, in fact, a printout of every phone number of every coworker in my department. Somewhere.

Knowledge, of course, is not presence. Two thorough searches of the desk drawers produced nothing--or rather, it produced everything conceivable other than that list of phone numbers.

By now a full hour had passed, and still I had not started work. My user name, my password, had fallen quite off the face of the earth, along with my brain.

Well, there is no amazing or edifying end to this. I wish there were. As it happens, the missing information simply popped back into my mind as abruptly as it had popped out. Sixty-five minutes later. I typed it in and began work. Later on I wrote the information on a strip of masking tape and stuck it on the side of the CPU.

What is left now is just a simmering sense of dread, a sense of just how bad things could become. And the knowledge that there's not a damn thing that I can do about it.

How Long?

I think I have not slept since I was 12 or so. What I have done night by night is something other than sleep. I have lain down for a moment, hidden myself, escaped for a time.

How long since a morning has simply come upon me, wandered in through the window at its own leisure? How long since it mattered what the robin and the bumblebee had to say? What has become of the kisses of my mother, of the ease of joy, of the daily conspiracy of every thing and every creature to remake the hours in all the fullness of purpose?

How long since life has mattered like that?

There comes a time--who knows how or when--that finds both waking and sleeping diminished, a time wherein what is merely memory is found to have superseded miracle.

And the loneliness is enough to kill.

My life becomes a continual hungering after that which has already been swallowed and digested. What food can there be in the world for the feeding of empty spaces?

Time passes, and does not make us wise. Time passes, and in its passage we become more and more what we have made than what we are. What is left of original essence is found in the teardrop, contained in the blank stare, wrapped up in the fitful dream.

The Strange, Occasionally Fortuitous Things My Mind Does Under the Influence of MS

For instance . . .

After having gone to Starbucks this morning to do my customary blogging stint, I got a phone call from my wife just as my first cappuccino showed up (delivered personally to my table, oh by the way, because I had already forgotten having ordered it). On the other end of the cell phone her voice seemed oddly hesitant as she asked where I was, what I was doing, and so forth. Then she apologized for yelling at me before I had left the house.

She needn't have mentioned it--because my mind had retained no recollection of any such occurrence. It took, in fact, some reminding before I could recover even a small sense of something having happened of the nature she was suggesting.

Oh, that's okay, I said. Why did you yell at me? What did I do?

There are things, as far as my brain is concerned (or not concerned, as it were) that may as well have never happened, for they have not been recorded, have not been saved, or have otherwise fallen through bottomless holes.

No point in arguing about nothing, right? No point in crying over spilled milk that did not actually spill at all, or was never even taken out of the refrigerator.

. . . and the peace of God, which surpasses all understanding, will guard your hearts and minds

Amen?

He works in strange ways, for sure.

The Dead We Know

I wonder what happened to my Canadian friend. She used to visit me often here, and sometimes on my LJ as well, but I haven't seen her in a while now. Something I said? Busted computer? Just busted in general?

I miss people when they're not around anymore, and I take people for granted when they are. I miss my mom and my dad, though I did not miss them when they were here. But that's not quite right, honestly. I think I always missed my dad, from the time I was a little boy and unto this very day. I failed to take heed of the passing time, the opportunities which came and went along the way. So did he.

I miss my brother. Twenty-seven years gone now. I still dream of him. Those are good dreams. He seems most often to enter into the dream that is confused and troubling and somehow take command of it, defusing anxiety, dispersing the fog, leading to the path, the purpose, the light. I am glad I still dream of my brother.

I miss my children. My step-children. Ex-step children. All grown up now, scattered like so many marbles to the corners and under the tables. Only two or three years ago I would speak to them nearly every day.

Most of all I miss my son, abducted by schizophrenia so long ago, lost to me in lands of his own, which I can neither enter nor name. And yet my heart continues to search, day after day, remembering when we held hands on the way to school, remembering how he rode on my back, remembering the games we played, the places we went, the stories we told. My heart remembers the fierce love of its youth, the panic in thinking for a moment that we could lose him, the solemn and unbreakable promise of a parent to never leave, never forsake, and never let harm get past his guard.

So it happens that tears so readily come to my eyes. So it continues to happen for the first time, over and over and over again. My mother, my father, my brother, my son.

Hold tight to what you have, cherish and adore, for tomorrow keeps its secrets to itself, and takes no council in determining its course.

My Moriarty

Studies involving cognitive deficits in MS indicate a retrieval deficit combined with an underlying storage deficit in the semantic memory. Moreover, results specific to language function show both slowness in performance and a significantly increased rate of error over non-MS subjects.

Another way of putting this would be to say that if one has holes in his bucket, his bucket tends to leak. Rather, it is guaranteed to do so. Until such a time comes when the holes are patched, the bucket will leak. Sadly, we have no way at present of patching MS holes in the brain.

Learning a new language, therefore, becomes something of an exercise in futility. I may read a sentence in Indonesian, look up the words I do not know, insert the same into my immediate comprehension of the sentence, but that is often as far as it goes. Chances are good to perfect that the next time I see the same words, I will have forgotten their meanings, and find myself consulting the dictionary once again.

Begin from the beginning is good advice in general, but not something to be done on a perpetual basis.

Why then do I persist? Stubbornness, in a word. Or perhaps I have too much time on my hands. Or perhaps I believe deep down that I can think my way out of these holes. Perhaps deep down I refuse to acknowledge the very idea that I have permanent brain damage.

I remember a movie from a long time ago (They Might Be Giants) wherein George C. Scott played an intelligent, inventive man who also just happened to have schizophrenia and was convinced that he was Sherlock Holmes. He spent his time pursuing a certain Professor Moriarty, a sort of embodiment of all that is evil, destructive, amoral. Everything seemed to contain a clue--the daily newspaper, if you read it just right--a road sign--a scrap of paper on the sidewalk--a sideways glance from a stranger, and so on.

Scott dressed like Holmes, wore the coat and the hat; he smoked a pipe; and while meditating on the motives of his evil prey, he would play the violin, just as Holmes had. But the thing is, he did not have a clue about how to play the instrument. It was the act itself that mattered, the holding of it, the bowing of it, an actualization applied toward legitimizing the charade.

Directly questioned about this at one point by a female companion he had named Watson, Scott broke down and in a moment of frustration (not to mention clarity), threw down the bow and shouted Well I don't know how to play the damn thing!

And yet he soon returned to doing so.

So it happens as well that I return to the study of a second language. It is the carrying of the book, the turning of the pages, the attempts of my tongue to actually produce the thing, no matter how dissonant the result, that finally matters.

Moriarty, I fear you not!

No More I Love Yous

I happened to hear a song on the radio this morning--Annie Lennox singing "No More I Love Yous"--and it instantly called forth the period of time just after I had broken up with Jamie, back in 2005. Isn't it odd how music can serve in this sort of mnemonic way, calling forth a sort of encapsulated essence of a certain time? It is more than remembering, recalling details or facts. It is the retrieval of a complex aura of feeling, so whole and accurate in itself that it can actually make your heart ache. In fact, one does not so much recall as he suddenly re experiences. It is not that one remembers and then explores what he remembers; rather, memory comes upon him, more in the manner of revelation. What arrives has not been called forth, but sent.

Strange world, this. Stranger yet the individual in it.

Have you ever smelled something, or caught a glance of something, or heard a sound, and found yourself instantly transported to the very core of another time and place? Suddenly you are five, or twenty-five; suddenly you are in a meadow by a river; suddenly you are sitting with your mother and the Cocker Spaniel on the back porch on a summer day regardless of these many years since they have died.

You smell something--something unnameable, and yet intact, complete--and you are suddenly beside your brother's hospital bed, holding his hand as his life slips away.

You hear a song, this voice, this pitch, and you relive how your heart sank so low, how your breath grew so short, how your soul reached then to the empty air where she had been. You can almost smell her skin again, you can almost touch her hair.

Strange world, strange world. Stranger yet the individual, this man, this woman, this perpetual child whispering well wishes in eternity to the unending cosmos.

Nothing whatsoever has been lost. Nothing ever comes to an end. People only imagine it so.