HALF A LEAGUE, HALF A LEAGUE.....

     To know more, to understand more, to seek out information. That has always been the mantra I have lived by and yet, at this point in time I am beginning to question it in specifically one area. It is an oft quoted adage that says, "Ignorance is bliss." Yet on the other hand, we state that "Ignorance before the law is no excuse."  Or is it a combination of both and the belief that one should definitely seek out what is needed - and possibly no more than that? But when does one know that the border has been reached - or breached, that the cup indeed does runneth over, but not in the way one wishes?
     When struck by the definite diagnosis of Parkinsons (PD), after the immediate desire to just die right then and there, after the initial anger has abated somewhat, though make no mistake that it is gone, for the anger persists, after all this, then what?
     I struck out on several paths at the same time. I found a wonderful doctor, joined a Movement clinic and went often, as recommended, and pursued information. What was the path of PD? I knew some generally, but not enough when it was this up close and personal. So I went looking and searching, reading, asking questions and watching the many, many webinars sent by the major PD organizations and yet, I wonder why the hell have I done that? What have I gained or possibly lost via this pathway?
      First, I must say that having a supportive partner, whomever it is, is a must. Someone needs to be there to hear you, to talk with you, to hold your hand, to cry with you, and to fight alongside you. I have that, in spades, and am blessed for that, but is it enough?
      I would say one needs more, for the fight still remains personal, and must be addressed in a personal manner. This I have done, and as a result have met so many wonderful people with whom I share laughter and pain, hopes gained and hopes lost, dreams shattered and how to handle that.
     And yet. And yet. Every time I read something new, or sit through another webinar or educational forum, I end up questioning this whole process. In Ecclesiastes, or Kohelet, its Hebrew name, it is written: "For in much wisdom is much grief, and he that increaseth knowledge increaseth sorrow."
     Well, that certainly says it all. Maybe there is a point beyond which we should not go, that curtain that must remain closed, and yet, that is a hard position for me to take, anathema to my basic makeup. So I seek the information and absorb the blows, but not always gracefully or quietly. Sometimes, the knowledge, that which puts faces and details on what one already knows, well, it ain't easy. Nor is it easy to read of PD in fiction either as in one newly published best seller, well presented as it was, for it, too, punched hard at me, at my psyche, at my evaluation of and for the future.
       Vague knowledge is one thing and definite facts or delineations are another. These details, these outlinings of what I know is to come, yet in far more realistic presentations than I have seen before, well, they are hard blows to take, to get knocked down and yet stand up once more and again and again.
     The other day, after a hard hitting, well presented 90 minute informative seminar with a reknowned doctor, I was gobsmacked. It all hit me again. What the hell am I fighting for? Why am I fighting? There is no secret to the ending of this. And yes, though not a single one of us gets out of this world alive, there is an unfathomable difference between knowing we are all going one way, one day or another, and knowing the details, the horrid details that are awaiting one, no way out.
     There is no cure for PD. There are some meds that can help with symptoms, exercise that can help stave off some of the outer symptomatic behaviorisms of PD, but one gets there, sooner or later. And the "there' is not a pleasant thought. It is not comforting to know the end, the awful, horrible things that will happen.The brain will continue to degenerate, the dopamine to lessen, and the worst of all, for me, the possibility of cognitive damage as the years go by. 
     So, yes. I read everything. Books, magazines, hear and watch sessions, ask questions and yet, the other day all I could ask was - why fight? What is the point? There is no point. Maybe I should just let this damn thing have its way with me? But then the kids bring up their own needs, the needs of the grandchildren, their love for me - lay on the guilt, try to build up the hope, and so I pick myself up once again and put one foot ahead of the other and trudge along, sometimes better, sometimes worse, but I do go on.
     It is kind of akin to the feelings of these brave soldiers celebrated in the famous poem about them, even as it speaks of the stupidity of war. So are those of us who continue to fight, to urge others to fight - are we the same? Are we both brave and foolish? Are we wasting our lives or providing inspiration? Hear Tennyson's words from The Charge of the Light Brigade and think upon them. "Storme'd at with shot and shell, Boldly they rode and well, Into the jaws of Death, Into the mouth of Hell, rode the six hundred." We are more than 600 and the numbers are growing almost exponentially as the population ages. And we too ride into Hell.
     We need to do more for this. It is not just Alzheimer's that eats up the seniors. This, PD, starts way, way before it begins to manifest itself in outer symptoms or behavior. Doctors often do not hear the patient and pooh pooh their questions and time is lost. More is needed. Understanding and patience are needed as loved ones become afflicted and things begin to change. But PD first and foremost, must lose the feeling of shame and hiding that its diagnosis engenders. It is a fact and no one's fault. It is what it is and we all, PD people and those associated with PD sufferers, must understand that and not turn away from that which might make them uncomfortable. Believe me, if you are uncomfortable, think about how much more so we are! 
     And so, we continue. I will read more, seek more, for that is my nature and I will do as the poem states, for I know no other way - at least at this point. "Half a league, half a league, Half a league onward..."