Tuesday, July 17, 2012

MS Alley-One locked door after another.

     Imagine if you will for a moment finding yourself in a dark alley, a very dark alley, the kind in your favorite thriller movie. You know the one where the guy is followed by a group of thugs, only to find himself in a cold, wet, dark, rat and garbage infested alley.  Along each side of the alley there are doors that he really has no idea as to where they lead, but what is trailing him has the potential to physically clobbar him, mame him, cripple him, potentially kill him.  As his heart pounds out of his chest, he is riddled with anxiety and a host of unfamiliar feelings, knowing the footsteps are getting closer  he tries to jump in the first door.  Its locked and he smacks his face into the cold rusty metal as he bounces like a superball to his knees, all the while feeling the presence of his assailant getting closer.
     He keeps trudging on, as giving up is not even an option.  So he picks himself up, dusts himself off and even though his knees and elbows are scraped from hitting the concrete, damned if he aint trying another door.  This one has a little give.  It opens about an inch before the chain reinforcement abruptly stops the forward motion and again he falls flat on his ass.  This time it is just a little tougher getting back to his feet, but the thought of what can happen if he lays there provokes him back upright.
     On to the next door, it flies open only to lead to another door directly behind it, locked like a vault.  Frustrated and scared, he grunts and groans and curses, lets out a blood curling scream and throws himself at the door, giving it everything he's got.  Nothing.  It just won't open, and yet the alley becomes darker, the footsteps closer, his fatigue intensifies, but he aint giving up. There are still doors he hasn't tried.
     All the while he is frantically checking these crusty, worn, rusty beaten up doors, life around him keeps moving.  He can hear the cars on the streets, horns blazing, glass breaking, but he doesn't have time to waste so he barely gives them a look.  He is fighting for his life, and relenting is not an option, so he fights to get in the next door, which happily offers him enough comfort to squeeze his body into, to catch his breath, before he realizes it goes nowhere and ends up on his back, wetter, colder, weaker, and older, more alone, but he can still hear all that noise in the world going around him, all of which he wants to be part of, yet those footsteps, the bad guys, still echo in his head.  He can't stop, and so he keeps going.
     By now he is naturally getting discouraged,  It doesn't appear that any of these doors are going to lead to anything that will allow him shelter from this horrific melee, but damn it he keeps going, even though he has missed out on the normal steady stream of what is happening around him.  He cannot think about anything but the assault that is weakening him, scaring him, emotionally and physically crippling him.  He knows he is running out of options and he feels he is trying his best, but luck just isn't on his side.  The alley gets even darker, the thugs are on his heels. and he finds himself powerless, running out of fight, running out of strength, wearing thin down to the core.  He gathers himself, he is weaker, he may have failed so far but something tells him that it just has to be that next door that he will find his solstice.
     This my friends is MS Alley. It's door after door and no matter how hard one tries to slam his shoulder into it, he finds himself more bruised up than when he rammed it.  It doesn't hardly seem fair, and it isn't, but it is reality.  Once in a while one catches a temporary break, takes a breath, recoups, and tries another door, but the bad guy is so ugly and so evil, he overpowers the good guy and leaves him wet, cold, exhausted, anxious, hurting, and torn up more than the last door.  For me MS has had an ugly pattern from bad to worse basically, and it seems that no matter what door opens, or doesn't,  it ends up hitting me in the ass, or the face, not that this story is consistent with all pwms, but it has been mine, and it appears the doors are painstakingly in shortage.
     I haven't tried every door, but I have exhausted a few alleys, and if just one of these darn doors would open long enough to let me hang for a while I would be eternally grateful.  I just want to live among the cars, the horns, the people laughing.  I really don't want much.  Just a few of life's simple pleasures...I guess that's life...mine anyway....


  1. I hope there is a door out there that opens up for you,and gives you the one break that you so greatly deserve!!! A gorgeous man on the outside and an even more beautiful one on the inside!!!!
    Your cousin,

  2. The Taoist masters would say that perhaps the person being chased should stop throwing themselves against every locked door they see, and try to conserve their strength and steel themselves for only the most promising potential openings, or for just the right moment to turn and face their enemy, if only to spit in its eye before it takes them down.

    Sometimes more can be accomplished by doing nothing than by desperate and frantic action. This is the way of the Tao.

    Of course, in the face of horrendous illness, the tremendous inner strength needed to allow one's mind and body to rest may be a rare commodity, but it is an essential goal to strive for. And something tells me that someone with Spartan blood can handle it.

  3. Ok kazmo how many taoist do you know that had ms.?! Im following your lead and nobody tries harder than you! Point taken nonetheless!

  4. It’s a dark alley. Full of furtive movements in shadowy corners. Danger lurks not just from that pursuer but in front, to the side, and, Marc is right, ultimately inside too. I don’t know why, to a lesser or greater extent, this is the hand dealt to those of us with MS. So far, there are a limited set of therapeutic options, almost none for PPMS. So, going back to Marc again, maybe the only option left is to deal with the “pursuer” inside. It’s not a recipe for a Hollywood ending, but it’s the one available to us. You’re a great storyteller, by the way.

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