Archive for February, 2010

2/23/10 another corner

     It has been a slow decline this past year for me.  While mike’s physical needs have become a bit easier to handle with him eating and swallowing pretty normally, his desire for his pain to be accommodated has increased.  It is impossible for me to be sure whether to trust his own perception of the severity of his pain because he certainly experiences a symptom of brain injuries called perseveration which makes it difficult for him to focus on something beside his pain.  He does live pretty fixated on the pain of the week trading the focus sometimes back and forth.  When we get the various pains checked there don’t seem to be solutions or fixes for his complaints so far.  Among others, he suffers from a pain in his butt (besides me) that he relieves by trying to spend about 14 hours a day laying on his side.  He has also complained that his eyes hurt and has taken to living with a sleeping mask on.  His feet have bothered him since summer which I believe is a nerve pain and he takes medicine but he really likes foot massages.  He desires a lot of attention for these problems.  He wants someone to reposition his pillow, to roll him back and forth, to shift him up on the bed, to shift him down, to rub the tops of his feet, to reposition his arm, to put his eye mask on, to take his eye mask off, to push in his feet, to sit against his feet, to refold the towel and try the pillow folded in half now, to just redo it to see if it gets any better the second time, to talk about how many people will really go to heaven, to discuss how many sins, how much money you make, what bible chapters you are reading daily and what new mission he can set you upon…and of course, make sure you pray for his healing before you leave the room.

I am worn from the daily litany and that’s without even mentioning the nightmare that bowel movements become when the rhythm is off.  And I get less patient, less trusting as we find few solutions and wonder whether it’s time to accept a certain amount of inevitable pain in order to ever have a life outside of that bed.  Obviously, I am not the one in pain so it is one thing for me to say, “get used to it.”  At the same time, mike is less than motivated to make the best of what we have since he is still counting on God’s overnight healing.  So he figures, “why would I make the best of what I do not accept?”

     There is this complicated movie Memento where this guy loses his short term memory and cannot create new memory.  To sum up without doing the movie justice, the wife cannot fathom whether he is really this disabled or whether he is just unmotivated– and in her desperation to know she creates a test for him.  every day he gives her her insulin shot for her diabetes when it is time.  One day after he administers the shot, she waits a minute and then prompts him a second time, “time for my shot” to see if he would endanger her life with the second shot.  Then she sits there, passive, watching him lovingly give her this second shot which kills her, too broken by this emotionally devastating life to stop him.  I identify with the psychological weight that comes with not understanding the myriad of variables that create mike’s choice, ability, potential, independence.  Can he choose differently?  Not necessarily.  But it haunts me as I see the waves of his needs crushing me into smithereens.  This movie husband’s disability eventually killed this wife.

            So in the interest to not be crushed and therefore to prevent our entire family’s wreckage as well, we are trying to make some life changes.  We have had our caregiver, don, working 7 hours daily, 7 days a week for the last few years.  We are in the process of trying to find another caregiver to work the evening shifts like 3-10 pm maybe 6 days a week.  It will be a big adjustment I am sure, both financially and just in finding, training and getting used to another regular housemate.  Mike is on board with this chage as he experiences the lost temper, impatience and distance from me that result from my own sense of being overwhelmed.

            I listened to Small Town Poets’ No Kinder Savior this morning that reminded me of this truth– “for the one who’s ready to give up, no kinder savior will be found”.  We are in a broken place and have been overwhelmingly blessed by friends who have stepped up to hold our pieces together as we try to apply some glue with a second caregiver.  God has still been good, all the time.  And though I feel a bit numb from the years, he still answers the prayers I can’t even articulate, mobilizing a community of saints that still bring meals, visit, feed, pray, give, rub feet, babysit, listen, counsel, and uplift.

            So this is where we are at and I am sure even this barely scratched the surface.  Sharing it takes opportunity and intention and attention that can’t respond to a conversational, “how are you guys doing?”  and updates probably won’t get any more frequent as our daily life seems to be about all I can tend to.  We are close to the 4 year anniversary of when our lives turned a corner on march 21, 2006 as well as mike’s 38th birthday on march 23.  I only acknowledge that since it’s quite possible I won’t be up to updating again before that.  though I don’t write often there is not one moment we don’t still count on prayer to sustain us as mike and i survive, discover, wonder, make decisions, and try to connect with the world and each other respectively.  And if you are local and we haven’t seen you in a while, consider stopping by.  I haven’t been much company for mike in a while and it’s always nice to catch up.  If you are at all interested in sharing a meal as a means for a visit check out the website for our schedule or just surprise us!  Thanks so very very much.

In his hands, michelle

February 23, 2010 at 5:02 pm 9 comments


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