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Category: NPH

  • Friday we hope to break the cycle.

    Friday is surgery day.

    Life is on hold; or at least it seems that way.  We go  through the motions, with occasional eruptions of fear, anger, despair, and yes hope, snuggling, hand-holding, and cuddling.  

    They say it is a fairly straight-forward thing.  And yet it has the potential to change everything.  Or do I hope for too much??  He fears, more so than his previous surgeries.  I hope, for I fear that the alternative is blackness and loss.  He hopes.  He wants his life back.  He wants to be able to enjoy his time.  I fear.  I fear it will not be enough.  I fear I am hoping for too much.  

    Hope and Fear locked arm in arm.  Friday we hope to break the cycle.

  • A Hiccup

    It seemed like such a perfect lazy Sunday.   We went to the last Farmer’s Market and wandered around the
    local hardware store looking for baskets or some other solution to contain the
    tide of scarves, hats and gloves the always seems to overwhelm the winter coat
    closet.   The afternoon was
    spent lazily with a glass of bourbon, a book, and slowly cataloging the library
    through Library Thing. 

    To reiterate, it seemed like a perfect lazy Sunday. 

    Which is perhaps why I was quite overwhelmed by whatever
    erupted in the evening.  There was
    a storm, a perfect storm of emotion, fear, anticipation, angst, tiredness, and
    frustration which seemed to suck all life out of the house leaving nothing in
    its wake.  

    Of course things quieted down.  I still don’t know exactly what happened, I suppose some
    kind of stress-related implosion of hopes and fears mingled with worry over
    upcoming doctors appointments.  I
    still feel somewhat shocked and bereft, like some big hole has been pulled out
    of the center and only the fringes remain.  There was the eruption, the reaction (not my finest moment),
    the withdrawal and huge sucking sound that followed in its wake. G remembers
    that he was very angry yesterday, but he doesn’t remember what he was angry
    about.  I really can’t say,
    couldn’t say even if I knew.

    Once again all is quiet, and surface-calm, the calm-smooth
    surface of every day life.  And yet
    that feeling of fragility remains palpable, as if everything could shatter in
    an instant.  Life revolves
    endlessly, an endless stream of days and activities.  But this life is like a ring floating in the void.  One misstep and I may fall off.  I am both repelled by that inner void
    and irresistibly drawn toward it.  I
    must stay toward the center, allow this narrow path to stabilize and widen.

    If I look carefully I see that there is something in that
    center, not merely an absence, but something that is taking root.  It is not quite evident what may
    develop, and yet there is that palpable sense that something will fill
    void. 

    Still we tread softly. 
    Appointments cancelled and rescheduled prolong the wait.  I choose to seek the path of optimism,
    that the delays are but little bumps on a path to sunshine.  The other sees each delay as a
    precipice that must be crossed and the increasingly number of obstacles only
    confirm the suspicion that all is lost.   I must not fall into frustration myself.   I must keep striving toward the
    light while holding on dearly to make sure that I don’t lose anyone in those
    chasms of despair.

    There are moments it is easier.  A shared bowl of popcorn: Sitting side by side, fingers
    tracing paths through the salt on the bottom of the bowl.  They touch.  Reassurance returns. 

  • 8:30 and I’m already Tired

    It is 8:30 AM and already I am exhausted.  That could be because I have been up since 4:30.  It could be because I was also up at midnight, 1:30 and 2:30, although I was able to go back to sleep on those occasions, although at least twice the sleep was only achieved through use of a sleep mask, ear plugs and a cold shoulder.  Sometimes it tears me up to do it.  But one of us has to be alert.

    It is more likely because the last 4 hours have just been a struggle over such, to me anyway, basic things, like clocks, telling time, and how to set the alarm.  G dismantled the alarm clocks, both the old one and the digital one.  I heard him, then saw him, do it.  Minutes later he told me he didn't take them apart, they just appeared that way all by themselves.  We got the digital clock because he can no longer tell time the old-fashioned way on a dial.  We tried to jolly him along about how hip he is as a fair number of our neighbor's students at the local community college also have trouble reading old-fashioned clocks with hour and minute hands.  

    So now he wakes up in the middle of the night and knows what time it is.  That knowledge does not help convince him that he should go back to bed.  He just gets angry and assumes the clock is wrong.  After all, why would he wake up at 2:30 AM?   So he tries to fix the clock, or he wakes me. Then he is angry at the world for not being awake when he is already to go.  After all, who told the sun not to come up until after 6?

    I am not (yet) so tired from the lack of sleep but just from the frustration of assembling and reassembling the clock and of setting and resetting the time and explaining how to do it over and over and over and ……..

    Now G has gone to the gym.  I am thankful that he still goes somewhere by himself even though I don't necessarily want to be in the car with him.  I would take him and still have an hour to myself, or an hour at my own gym, but at the moment I have nearly 2 hours.

    Should I sleep?  No.  I should go to the grocery store.  I need to go to the grocery store and I can go, come home, and put everything away before he gets home.  Maybe I can even get in a brief workout and go to the grocery store. I also need to go refill the propane tank for the grill (not offered at the local grocery store unfortunately) but I will save that trip for later.  Once upon a time I took this kind of chore for granted.  Not any more.  Everything must be planned, weighed and measured.  Everything involves a trade-off. Perhaps I will be able to get away a few minutes.  Perhaps we will go together.  Perhaps it will break up the day.  It doesn't promise to be a good one.

  • "We can't do this any more."  and "I don't want to go to any more of these things because you waste the day waiting for it to happen".

    These are the pronouncements on going to a concert this evening:  Bard Music once again.  We did go.  And G enjoyed the music immensely.  How could he not they performed selections from Rachmaninoff's All Night Vigil,  one of his favorite pieces of music, and Stravinsky's Vespers.  

    But the day itself was an exercise in waiting, and patience. 

    G has had increasingly difficulty with the concept of passing time, and also with reading a clock.  For a while I kept a calendar on the wall, and it did help, but only briefly.  I quickly learned that posting what was ahead was a recipe for disaster.  Better that the future remain unknown.

    First of all, G has increasing trouble reading a calendar.  He also has increasing difficulty reading a clock and telling time.  If he knows something is coming up he frets and frets and worries about being late.  Since he can't really tell time well, he is always on edge, ready to go, and has trouble understanding that he has to wait.

    So was the story of today.  G was always ready to go. He would pack and unpack.  He would want to go to the car.  He couldn't occupy himself with anything else because he was afraid of missing he concert.  The countdown began in the morning.  The concert was at 8 PM and G pretty much exhausted himself preparing to go over and over and over, and trying to rush me into going as well.  I find the whole thing rather sad.  But then, of course, it is only the tip of the iceberg.