2/23/10 another corner

February 23, 2010 at 5:02 pm 9 comments

     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 lotsahelpinghands.com for our schedule or just surprise us!  Thanks so very very much.

In his hands, michelle

Entry filed under: updates.

december 18, 2009 3/30/10

9 Comments Add your own

  • 1. Matt Koupal  |  February 24, 2010 at 10:30 am

    I had this wierd dream just last night that I was visiting you guys. Mike was sitting up and very conversational, nearly back 100%. I felt such joy and peace for you. Your update brought me back to the reality of our world, and the ongoing opportunity to serve faithful servants. I hope others who read your update will be re-energized, and encouraged to not grow weary because the road is long. I always want the quick fix – a hospital visit, a donut delivery, a doggie lick or a Bugs Bunny cartoon – and then shazzam! – everything gets all better right quick. You’d think I’d be more mature and wise than that by now.

    Michelle, we’re here for you guys in the long run.

    In prayer and action with renewed intensity,

    Matt

    Reply
  • 2. Barbara Gobrail  |  February 25, 2010 at 2:09 pm

    Michelle,

    As Americans, we are focused upon the future, but God wants us to learn how to celebrate the moment! I attended a concert by Michael Card several years ago at Fairhaven Church here in Dayton. The pastor at the end of the concert (in early December) said that our task was to learn the “sacrament of the present moment” and that phase became my “mantra” – if we only would learn to take one moment at a time, not worrying about tomorrow, or be concerned about what I did or did not do yesterday! So we need to learn that each moment is gift, and celebration, no matter how much pain is involved! My husband’s death from cancer was almost two years ago, and my mantra continues to be striving to learn the sacrament of the present moment!

    You and Mike continue in my daily prayers! May you grown and blossom each day!

    Reply
  • 3. Bob  |  March 1, 2010 at 11:03 pm

    I absolutely love your honesty Michelle. And I appreciate the allusion to Memento… it has given me a whole new perspective for you. Thanks for sharing.

    I am glad some changes are on horizon. I think a wise move. We love you and pray for you (both) daily.

    Bob

    Reply
  • 4. Jeanie Bohrman  |  March 12, 2010 at 8:42 am

    dear M…my husband was injured 12/08/06 and is a severe quadriplegic. He also experiences nerve pain and recently started taking marijuana pills…they really work. We also have a synergy air mattress that automatically turns him all night long. These are just a couple of things that have really helped…hope they may help you…in some small way. As a caregiver myself, your beautifully written blog always humbles me…God love you sweetheart…I wish we were neighbors. love you, as only another caregiver can, Jeanie (Amy Fanning’s mom)

    Reply
  • 5. Beth Griebel  |  March 13, 2010 at 10:38 pm

    I love how authentic and real you always are in the midst of the struggles. It reminds us of the need to pray for all of you. Praying with love for each of you and for the perfect caregiver to join your lives.

    Reply
  • 6. mary stadler  |  March 15, 2010 at 8:34 pm

    I think of you so often and I do pray for you and for Mike. I am so glad you are looking for help because you really need to take care of yourself in order to take care of everyone else. You need to listen to the voice that tell you what is best because I know it is the voice of God.

    Reply
  • 7. Kevin  |  March 25, 2010 at 10:25 am

    Happy belated, Z. Not a day goes by when you and your family are not in my thoughts, and to the extent such thoughts are not in and of themselves prayer (who’s to say?), I try to remember to consciously pray with similar regularity. I pray for the big things–healing, restoration–but also for all what may seem like the little ones–patience, determination, comfort, clarity, discernment–but actually make up the seconds, days and hours you actually live in. I hope that you do not lose hope, my friend. I hope that you, understandable as it may be, do not give up on pursuing every road to recovery and every definition of recovery that may be out there. It may be gradual. It may be glacially slow in coming. It may not look like progress at all. But the Mike I know is and has always been a fiercely, doggedly determined one. I don’t pretend to have walked for ten feet in your shoes. There is some strange mystery in this dubious gift. In addition to all the big and small prayers, I pray that you are, every day, open to taking whatever step our Lord has put before you. Even if it hurts, even if it feels fruitless and frustrates you to the point of wondering if your faith is for naught. Be strong and take heart, my brother and warrior in Christ. Peace and grace be yours and to your precious family in exceeding abundance. Kevin

    Reply
  • 8. Rita Malloy  |  March 25, 2010 at 10:36 pm

    Michelle-Thinking of you all. Your honesty and strength are amazing. I hope you that some of the changes are in effect and that you are in a better place now. God Bless You.

    Reply
  • 9. Steve Fisher  |  March 28, 2010 at 9:43 am

    Dearest Michelle:

    I recently resigned my position and am looking for work. The ministry I worked for also does international relief work. So I ask the VP of World Concern if they needed help in Haiti, since I had some time on my hands. So I am in Haiti for the next month.

    The first day here I tried to Skype with video my wife, Patty. (I had not spoken to or seen my wife in 48 hours) We could see each other but we had no audio. We could only e-mail messages which were very slow. I was very frustrated.

    I was separated from normal communications from my wife for 48+ hours and was miserable. It has now been more than 4 years – for you it has been over 1,460 days and 35,040 hours since you have had normal communications with Mike. Normal life. I am so very sorry! I really have no idea what it is like to be you. I am surrounded by destruction and poverty i have never really known – but the pain I feel in your posting is much deeper, more painful than I have ever experienced or seen, even here.

    I wish i had the word, the balm, the power, the answer, the key to changing your situation, but i have nothing for you. I can only pray that God would heal Mike, that God will continue to comfort you with his arms and hold you up with his strong hands. I will pray.

    I am sorry I have no answers.

    Steve

    Reply

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