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How time flies, how it gets away from us like a ball from a little child or the dreams of youth. Some days it seems like only yesterday that I started caring for Grandpa Purdy, but when September comes round it will be nine years since that journey began. Six since it ended. In some measures that is a long time, but when in this past week I found myself again visiting the court where Alzheimer's holds its sway it seemed like I had never be absent.

It is hard enough when you have one grandparent who takes the path of Alzheimer's; there is a particular melancholy when you watch a second follow. As my father's father went, so now my mother's father follows. Grandpa O'Keefe is now well down the road of a disease which wraps everything in a fog of confusion. He is past the halfway point--incontinent of bladder, often incontinent of bowel, barely able to walk and nearly unable to dress himself--but how close we are to the end is not yet clear. Drawing closer for sure, and the road shall be harder still.

Every journey through Alzheimer's is unique, no two exactly alike, and each precious. That term may seem odd in the realm of Alzheimer's burden, but it is true. Even in Alzheimer's the tale remains life's journey, and life is precious no matter on what pages it be penned. That is hard to see when tears blind and the hard things hurt, but good things are often hard to see.

Though every journey of Alzheimer's is its own, a person familiar with making the trek can find remembered landmarks, familiar signposts in events and failures, and even in the emotional currents which eddy through the loved ones slipping away in that disease. So, though in some ways the declines of Grandpa Purdy and Grandpa O'Keefe are much different, in other ways I see familiar failures and the old emotional flailing, like long forgotten friends. Except, those things are no friends.

Grandma O'Keefe had scheduled a family visit down to Virgina to see her son, and her own brother who was also quickly fading to dementia's ravages. It was a well deserved break for Grandma, and watching Grandpa in her absence was divided among several members of my family. I took the first, and longest, shift, arriving at midday on Friday and staying to about mid-morning on Sunday. I can't say I was looking forward to the occasion. I knew it would be an adventure, yet with my past experience I wasn't feeling the same apprehension other members of the family faced over their later shifts. It would be as it would be, and I knew how to ride out any storm.

It has become a pattern for Grandpa that whenever Grandma goes on a trip somewhere he then becomes determined to go somewhere himself. The emotional impetus for this seems to be some combination of feeling hurt that Grandma is leaving him and not taking care of him, and concurrently becoming determined to show the whole world that he is a big man who can do big things. Last time it was going to Syracuse to do big things. That time he found the hidden key to his car and left town in spite of all strenuous discouragement short of physical restraint. He never even made it to the right road for Syracuse. He should have long ago made it to Syracuse and back again by the time we got the call from the police. It was well after dark. Grandpa had created a minor accident all by himself, in a town far off from Syracuse. It was time to collect him.

He was unrepentant after that disaster, but it was, at least, enough to get his license officially suspended.

This time, news of Grandma's trip provoked Grandpa to decide he was moving to New Jersey. It is interesting to note that Syracuse was the most recent place they lived before we moved them to small town near us, and New Jersey is where they lived previous to that. Grandpa's choices were progressing back in time. The morning word I received on Friday was that when Grandma left for the airport Grandpa was still not dressed, had not eaten breakfast, and was demanding that he be given the key to his car so he could move to New Jersey. When his request was not granted he vowed that there would be no house left for Grandma when she returned.

So I went to face what would greet me.

When I arrived Grandpa was dressed. Sort of. I think he had the wrong shoes on each foot (maybe not even the same pair), and his suspenders weren't on correctly. I'm not sure if he managed his pants on front-wise that time. But he had pants and a shirt on, so close enough. When I came inside he was intently going through Grandma's desk looking for the key to his car. I knew what was up but pretended to be utterly disinterested in his activity and asked him if he was hungry and wanted something to eat.

No, he had not eaten breakfast. No, he was not hungry, he had eaten a banana. He did not seem irritable in answering my questions but by his actions it was clear he was still intent on his imagined move to New Jersey. He told me there was some corned beef in the refrigerator which I could slice up for a sandwich. I asked him if he wanted a sandwich and he brushed me off. I finally got the memo that he was hospitably mentioning the food in case I was hungry but he had more important things to do than eat.

So it went. I made myself scarce because I saw that the next thing on Grandpa's agenda was to get me to help him move to New Jersey, and I had no intention of doing that. Instead, I hid downstairs in the finished basement. The couch and the coffee table down there made an ideal location to set up a laptop and keep myself occupied while Grandpa chased his dreams. Intermittently I went up and asked him if he was hungry and wanted to eat, but he remained adamant that he was not eating--he planned to be out of town before he had another meal. Like a vow of fasting, his course was set.

I was afraid he had found the key to his car so I snuck out and disconnected the car battery. It was doubtful he even had the ability to drive the car like he had months ago, but I wasn't about to take chances. I found out later that the key had been taken out of the house, but once the battery was disconnected I had nothing to nag my mind about what Grandpa might do. With the car dead there was nothing he could do, though he might not comprehend it.

He tried to rope me into helping him move. His snagged me with a direct request for help loading the car when I came up (once again) to see if he needed any food or drink. I evaded the request by going into his room, taking a quick look, and then leaving. I did it so quickly that to Grandpa's slow mind it looked as if I had complied with his request (though I said nothing) and when I went past him I escaped back to the basement. That bought me a few more hours without a confrontation.

Because of frost heave in the ground, the door exiting the breezeway from the house was difficult to open. I could open it easily with a firm yank but it stuck enough that Grandpa found it impossible. Thus he spent the day alternately trying to find the key to his car, "packing" in his bedroom, "packing" things in the kitchen, and trying to open the breezeway door. Most of the time was spent futilely on the breezeway door. I checked on him at intervals and he commented on the difficulty of the door. I agreed sympathetically, but since he didn't explicitly ask for help I played stupid.

By keeping myself mostly absent I had maintained a cordial atmosphere but it was a balancing act. Grandpa was preoccupied with his move and so long as I wasn't around to antagonize him by refusing to help there was no conflict. I had hoped to let him burn out his ambition alone, but no such luck. Around mid-afternoon he called downstairs to me, asking for help.

"What kind of help, Grandpa?" I asked innocently. "Loading my car," he said.

"Why would you want to load your car?" I said.

"Because I'm moving. This is a bad neighborhood."

"Where are you moving to?" I asked. "Where is your signed lease?"

"I'll get that later. I just need you to help me load the car."

"Grandpa, you're not moving anywhere if you don't have a signed lease. You need a signed lease before you can move. I'm not going to help you load the car unless you show me a signed lease," I said, trying to keep my voice as bland and reasonable as possible while concurrently conveying an unalterable sense of immovable obstinacy.

It is hard. There is a strong temptation to launch into a rational debate and point out the utter nonsensical and complete stupidity of his actions. He is supposedly moving to "New Jersey" with no fixed location or address and not even the ability to open the front door. What absurdity is this? In the face of such sheer lunacy, the urge wells up like bile in the throat to dress down in detail the long list of the intellectual failures in his supposed plan. Make him see reason, some voice whispers deep within. It's as if the mental failures scream for rebuttal.

That is a temptation of poison. Such a rebuttal is as pointless as the attempted move, and equally toxic. There is no exchange of ideas here where Alzheimer's emotion rages in a storm of desperate need. Grandpa's rationality leaks like water from a rusted bucket, and to address him in the rational frame is addressing him in an unknown language. He lives now in the place of his emotions, longings, and desires. Beyond that, he lives in the past of what was once true about his life. That is what he knows. Facts of the present do not exist here.

I managed to check myself and I kept my objection simple, forsaking all the obvious failures in his plan that I wanted to point out, and gave him the simple requirement for my help. If he wanted my help, he had to present a signed lease. That simple.

"I've been doing this for sixty years," he blustered, as if that were somehow an answer.

"Then you know you need a lease to move some place," I said. "Let me know when you get one and then I'll help you."

So Grandpa continued on by himself. The object of his desire wasn't really literally New Jersey. That was a memory, a name for the past, and feelings he once had. Where he wanted to go was back to that glorious time when he was young and healthy. Time moves quickly, and it had escaped from Grandpa. He reached for the dream of when he once ruled his own life with surety, when his steps were firm, his hand steady, and he understood people. Then the world was friendly, the neighborhood good, and life fine. That wasn't here, that wasn't now. There were no words of logic to answer his longing, no objection that might still him to peace. He had to hunt for it alone, hunting ever on with the dogged determination that only Alzheimer's has, the sure memory that since it was before it may still be so again. We see the longing in the mania of insistence, the hope spent in hours trying to open a door without the strength to move, a sadness which needs no words.

I was preparing to start on supper when Grandpa outright asked me to open the breezeway door for him. I hesitated a moment, but decided that refusing his request was an unnecessary denial when he was still permitted outside. I had managed to skirt around a big confrontation so far, and thought it good to keep it that way. So I opened the door. He shuffled outside with his walker and a random, meaningless box he had picked up from the breezeway. While I worked on supper I watched out the window as he walked around his car, opening each door in turn like an uncertain man. He finally stuck the box on a seat and tottered back inside, one car door left hanging open. What I saw was the ghost of a memory that faintly hinted at what moving had once been.

With the breezeway door again shut Grandpa spent the rest of the evening once more trying to get outside. I sat down to eat and when Grandpa came inside on a lull between attempts I suggested he sit down and eat the plate of steak and beans I had set for him. He politely declined (having more interest in the imaginary little girl he thought had been sitting in a chair than he had interest in his food) and went off. Darkness set in and still he feebly fought with the door under the illumination of the breezeway light. By 8PM he finally gave up for the night.

Consider how this is a man of eighty-three years who drank nothing all day and ate no more than two bananas to sustain him. In one form or another he had chased his intention to move for some twelve hours, driven by such an obsession that all food and drink was spurned, all idea of rest rejected. I am often amazed at the lengths to which Alzheimer's will drive people. I think those not trained in handling Alzheimer's often try to fight this mania, try to bring the sick person back to reason. But I know from long experience that you can't bring them back--they must find their way, or not, themselves. Like a wild animal caught in a trap they fling themselves against whatever obstacle is in their way with all the feeble frenzy they can manage. I saw it many times in Grandpa Purdy, and that day I saw it in Grandpa O'Keefe. There was no reason, no sense in it. The claws of Alzheimer's sunk into his mind, the disease constricting his thoughts like an iron trap, and he had to get out. He had to, beyond all reason. And so he flung himself against the obstacles like a frenzied animal, and like such an animal he would have turned on anyone who would try to stop him. What should have I done? Wrestled him into a chair and forced food down his gullet? Jammed his daily pills in his mouth?

No, the old hand knows the way of these things. It's a bad spell, but these manias come and go, like an ebbing tide. One must simply hold the stern steady and ride out the swells. This too shall pass, and even so, this too shall pass. They come back less, and less often, but the journey is theirs to make with us here only to meet them, to greet them, and to kindly send them on.

When exhaustion and hunger had worked their toll, Grandpa came in for the night. Like a feral animal he stood by the table and took the cold steak from his plate and held it in his hands, ripping off chunks with his teeth. To stare or look away? It was hard to decide which, seeing in the vividness the grandfather I was losing, and gaining. He refused my offer to heat up the steak, and declined any of the other food. There he leaned like an exhausted man on edge, still ready to bolt away if he could. But there was nowhere to go, and with the steak gone he finally sat, staring rather vacantly ahead. At 9PM I suggested bed, but he refused. By 9:30 I went to bed, and sometime not long after 10PM I heard him go to bed.

Saturday was better. The swell of mania began to recede. He ate his meals, he took his pills, and constrained his attempts at moving to New Jersey to between meals. On his request I opened the breezeway door once for him and he again made the same circuit around his car to place one meaningless empty box in the back seat. Inside, the breezeway door again shut, he returned to his futile war. New Jersey was calling, or something like it. Perhaps a siren of the mind.

Early afternoon I checked on him yet again. I found him sitting on the bench beside the door, staring at the floor or maybe the middle distance. Was he thinking about how he might open the door? Perhaps he was thinking about his past glory, now only a memory quickly fading. Maybe. But probably he was thinking about nothing. He had the empty expression of someone simply lost in their not-thoughts.

I asked him if he wanted a drink, and he said no. I asked him if he was hungry, and he said no. I asked him if he wanted a banana, and after some hesitation he conceded he would eat one. So he sat there on the bench in the cold, eating his banana, an old man in the late winter of his life, trapped in the prison of his mind, unable to let himself out. His physical surroundings told the story with poetry I could not improve.

I expect some day Grandpa will want to move again. The strangling hold of Alzheimer's will seize him again, the desperate desire to be free will come, and he will throw himself against all that holds him back. Maybe next time he will need to return to the Bronx. He was raised there, always backward in time to the days when all was fresh and clear. When he was a boy of ten he ran the entire grocery store where he worked. He will tell you the story, whether you believe it or not, if you ask him. But you better ask him soon. For what once was, and now is not, even their shadows quickly fade. The door is shut, the lights are going out. Soon there will be nobody home. Stop by when you have the chance.

I swapped out duties with my brother on Sunday morning and went home tired, full of memories and a melancholy for which I have no words. What answer is there to the vision of such things, to the scourge of time and deprivations of frailty? Only riddles.

Ah, fear not, the end shall come soon now, swiftly even, when love knows its full measure and all battles cease, though we know not when. Taste the days you've been given, savor the air you breathe, and do your deeds well. For each is a gift given, even unto the last, to be treasured as that which we have received, and even so valued. That is the truth, the burden, and the freedom.

______

Have you enjoyed my writing on this blog? Has my writing on the struggles of caregiving and Alzheimer’s touched you? Do you want my writing to reach more people, to help and encourage them? Perhaps this post has reminded you, as what I experience has reminded me, how much those facing Alzheimer’s need support and encouragement. I have written a book about my first experience with Alzheimer’s and I am currently running a crowd-funding campaign with a goal of reaching as many people facing Alzheimer’s as possible. Would you take just a moment to look at that campaign and consider offering your support? Thank you, I appreciate it.

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So, long time readers, in case you haven’t figured it out, my book has been taking up a lot of my writing time. Finally, after a very long time, we are on to the next step. And so I bring you this. The cover is finished, the book is ready. Now I need your support. I’m looking for your help getting this book out to people facing Alzheimer’s. I want to bring them support and encouragement, but I can’t do it alone. If you are long time followers and know who I am and what I am doing, please consider supporting. Even just $10 would be a big help. For those who haven’t been long term followers, I’ll give it to you from the top.

The Short Story

When Rundy was twenty-four years old he began caring for his grandfather who was dying from Alzheimer’s. Grandfather and grandson took a three year journey together to Alzheimer’s end. This book is the story of that journey.

With compassion, hope, and a strong dose of gritty realism, The Sea is Wide tells the story of how the wide sea of Alzheimer’s was crossed. In writing that is by turns uplifting and poignant, Rundy shares his journey of perseverance and love.

Photo Credit: Philip Maslin
Grandma and Grandpa

The Purpose of This Book

Alzheimer’s is a scary disease. People who are facing Alzheimer’s, whether in themselves or in a loved one, face many fears and questions. This book will be an encouragement and support to those people. I am sharing my story to pull back the curtain and shine a light into the dark corners of the Alzheimer’s journey.

There are hard parts and sad parts in the long road of Alzheimer’s, but there is also a place for love and hope. This book is so that nobody has to face Alzheimer’s alone.

Why I Need Your Support

Front Cover

It has taken me several years to write and refine the manuscript. After multiple revisions and many edits, the story is now complete and ready for publication. I had a professional-quality cover designed and carefully polished with extensive feedback. The complete book package is ready to print.

This is a timely book. The number of people affected by Alzheimer’s is increasing rapidly. According to the Alzheimer’s Association, every 67 seconds someone in the United States develops Alzheimer’s and today it is the sixth leading cause of death. One in three seniors dies with Alzheimer’s or another form of dementia. An estimated 5.2 million Americans of all ages had Alzheimer’s disease in 2013. By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 7.1 million—a 40 percent increase from those currently affected. By 2050, Alzheimer’s disease may nearly triple. Nearly everyone will be touched by Alzheimer’s at some time in their life—whether it is grandparent, parent, relative, friend, neighbor, or coworker. We all need to better understand how to face this disease, and help others deal with it.

I am excited by the possibility of reaching those people. My experience with caregiving has convinced me that people need this story of hope, encouragement, and perseverance. I want to give people help and encouragement through this book. I want to go out and personally help them by sharing the lessons learned from my experience. But that is a big audience to reach, and I need your help.

How you can help:

(1) Spread the word. Tell your family, friends, neighbors, and coworkers about this book. The more people who hear about this book (and can tell others) the more people will be helped in their struggle with Alzheimer’s.

(2) Give a monetary donation to this campaign. It costs a significant amount of money to get a book published and to the people who need to discover it. Here’s a partial list of expenses:

  •     Cost of setting up the title (ISBN, setup fees, etc)
  •     Cost of printing the books
  •     Cost of shipping the books
  •     Expense of advertising
  •     Expense of setting up a website
  •     Travel expenses incurred going to speaking events to share the book

Even a contribution of $10 can bring this book to people and revolutionize their approach to Alzheimer’s and caregiving. Together, we can bring a new perspective to Alzheimer’s.

Your generosity and support are greatly appreciated.

What People are Saying

It is a must-read for those taking care of loved ones suffering from Alzheimer’s and for those in the medical and nursing profession. I will definitely recommend this book to my patients and nursing students.” – Louise O’Keefe, PhD, CRNP.

I highly recommend this book.” – Wilmer Estevez, RN

An honest look at what daily care looks like through the eyes of a loving care-giver. I laughed, I cried, but most of all, I observed how it is possible to care for a loved one through the very bad days that are inevitable while also being grateful for every respite. […] I want to thank you for showing me that beyond all the heartache this can be a journey of love and dignity.” – Cynthia Phillips, Caregiver

A real insight into the depth, love and reality of a caregiver and a victim of Alzheimer’s.” – Debbie Rombach, RN

I laughed and cried my way through […] it echoed things I went through with my mother and her dementia.” – Alice Janick, Caregiver

The Sea is Wide gives healthcare professionals an inside look at the struggles that families of those effected by Alzheimer’s face on a daily basis” – Nicole Wayman, LPN

Author Photo
Thank you for caring–Rundy

Interview with Rundy Purdy

Why did you write the book?

I wrote The Sea is Wide to share my experience, and my grandfather’s experience, facing Alzheimer’s. My goal is to educate and encourage those facing Alzheimer’s, and provide them with hope and support.

What was your inspiration for the book?

Life inspired this book. In a sense, life wrote this book. What I experienced in three years of caring for my grandfather powerfully affected me and deeply changed me.

Also, I wrote a journal/blog while caring for my grandfather and that formed the rough base material for what would become The Sea is Wide.

What would you say to someone facing Alzheimer’s?

The journey you face is hard, but it is not meaningless. Alzheimer’s can take many things from you (or your loved one) but it does not take away worth. Most importantly, Alzheimer’s cannot touch love. Love laughs in the face of Alzheimer’s because it knows in the end it cannot be destroyed or beaten.

And finally, you don’t have to take this journey alone.

What do you plan to do with the funds you raise?

The purpose of the funds we raise is to reach as many people as we can with my story–and so encourage and support as many people as possible. A big part of the funds will be used to print and ship the books, and then also for travel expenses to go to venues and speaking engagements to share my book, my experience, and my story.

To donate, please go here. Thank you so much!

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Night frozen window

This is always a difficult time of the year for me. The really hard part of winter begins in December, when the days are darkest. This hard stretch continues to worsen as January lengthens, but the bleakness reaches it nadir in February. You can find me here every year, when all seems most desolate and everything appears to spread as empty meaninglessness far as the eye can see.

Every year is hard, the very hardest in February. But some Februaries are worse than others. I don't know if it has something to do with how much sickness a particular winter has, or how much snow and cold, or if it is tied more to things in my own life. Whatever the reason, this seems like a harder February than many in recent years.

I think I am struggling with depression, probably of the seasonal sort. For a number of weeks now I haven't had any interest in playing computer games. At first I thought this a stroke of good fortune--with no interest in game playing there was one less distraction from work, one less temptation from productivity. Then I realized my lack of interest in game playing didn't come from me being eagerly caught up in activities. Rather, the lack of interest sprang from apathy. That is never a good thing.

Game playing could not interest me because I couldn't find much motivation or meaning to do anything. Yes, I was plugging away at getting the minimum done at my daily obligations--but once that was finished apathy swallowed me. At the end of the day even having fun felt like too much work, pointless, and why bother?

I lost motivation for blog post writing. I'm trying to get that back. I have a bunch waiting to be written, but all eagerness has deserted me. I struggle to apply myself to most reading. (I have managed a bit of novel reading.) On top of all this I find no real excitement in my book project. My book about Grandpa is nearing completion in exciting ways and yet it just feels more like a grind and a duty than the exciting and interesting beginning of the next adventure in my life. This is great, this is amazing, this is what I have been striving toward for years. And yet, what I feel is "Meh."

I don't want to feel "meh." I would like to feel the true goodness and light of that which is starting, that which is beginning to unfold and I can partake in. I want to apprehend that, to rejoice in that which God is giving me.

Instead, I feel a crankiness and a gloom. I feel irritable and short of patience with people. I don't want to be around them even as I also feel some need to be around them to escape the darkness and closing coldness. I want the world to go away. There is a feeling of being pressed down upon. I feel like I want to sleep, but I don't want to go to bed. I want to hide away in some hole, and yet I feel trapped indoors. I want to get out. I want lights turned on, very bright everywhere.

Everything seems cold.

I long for bright sunshine, blue skies, and a warm wide world which welcomes me to do things. Yes, I long for that not just around me, but springing up inside me, too. I hope it is just the time of year, the weather, which brings this brew of bleakness. By February all my energy for dealing with winter is spent. I know that. And if that is all that it is, then when mid-March comes with its bright sunshine, melting snow, and warmer weather--then this cloud with dissipate. But if it is something more, this may be a longer battle.

Spring will come soon enough into the world around me. February has reached its end and March is coming. May spring also come within me. May joy and gladness come, and eagerness and vigor in labor--even a heart revived. May I know freedom from gloom and the hope of real fellowship in the midst of toil.

We are not meant to live all of life in winter.

Morning frozen window
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The time has arrived. After much work (big thanks to my talented brother Justin who designed the covers and many more) and much agonizing, I must now decide what cover will go with my book The Sea is Wide: A Memoir of Caregiving. It will be a tough choice. In the end I must weigh the pros and cons of each possible cover and make the final decision myself. But feedback can help that decision making process, so I’m here to ask you all for your thoughts. I have posted a selection of the five top covers. Take a look, give your vote, and maybe even leave a comment!

Thanks for participating!

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Water in darkness and light

This past autumn one of my brothers survived a car accident. In the space of a breath his vehicle swerved, in less than a second careening over the guard rail. A roll down the bank followed, the blur of a tumble leaving him dangling upside down, the upended car perched on the edge of a pool of water.

The vehicle was a crumpled mess, and yet he escaped without a scratch, without so much as a bruise or a strained muscle. Thank God for such mercy. To see the crumpled wreck of car is to wonder how someone could walk away unscathed. Thank God for His loving protection. Considering what had happened, and what had not happened, I can only feel deeply grateful.

And yet, I couldn't simply go on with life. I thought about my reaction, and it bothered me. God seemed so good after that miraculous preservation through the accident, but was I measuring His goodness by what pleased me? Home team wins the ball game, God is there. Home team doesn't win, then what?

God is good, that is sure. But how easy to affirm such when God does exactly as we want. A different thing entirely to find comfort in a loving, protecting, keeping God when all the goodness you could imagine is snatched away. Or even a small measure of what is treasured. What would be my feeling if instead I stood at that fateful place on the road and looked down to where my brother died? In my mind's eye I saw myself, and I was not resting in God's goodness. I saw myself in that imagined place, and there was no warmth toward God in my heart. I was angry beyond expression that God robbed me of a brother I wanted for many years to come. My heart clenched against God in a way that frightened me.

I could not put that from my thoughts. To find my thankfulness and rest in God so dependent on circumstance left me uncomfortable. What value is trust if you only trust someone when trust doesn't really need to be exercised? Sure, it is easy to trust God when your brother is saved from death. What about trusting God when he dies? Many people I love will die--if not sooner than surely later. And what praise and thanks and trust will I give God then?

By the measure of myself, I won't give much praise at all.

By my own confession, the trust I give God is a mockery of trust.

This analysis troubled me in a double measure because, it seems, I also become guilty of hypocrisy. People around the world are suffering tragedy, and tragedy has struck even closer; not so many years ago my aunt was killed in a car accident observably no more severe than what my brother survived. To the world I have declared that God is always worthy of praise, is always trustworthy, and is always loving and good. I call the world to believe in such a God, to rest and trust in such a God. But if I can already see that I will not live up to such when the hammer falls in my own life, what right do I have to proclaim those truths about God unless I relish heaping the judgment due hypocrisy on myself?

On first thought that measure of oneself does seem like good cause to shut up about God. If in hard times I am not a paragon of the virtues I would extol, what right do I have to speak of them? Though such a thought seem true, it is in fact false. A very clever lie, but a lie nonetheless. A lie because the reality of God's qualities, and our proclamation of those attributes of God as true is not dependent on our mastering those virtues. The truth of the love of God is not dependent on us having attained to such a loving nature. The truth of God's goodness is not dependent on us fully apprehending that goodness. The truth of God's justice is not dependent on us always understanding that justice. If all the wondrous aspects of God were things we could fully apprehend or attain or encompass with our feeble selves then they would not, in fact, be very awesome at all. The fact that we fall so horribly short of the godly qualities of God is a reminder that God is awesome enough to be God, and worthy of all that we so faltering and failing are called to give Him.

It is not hypocrisy to declare that God deserves many things we fail to give Him, that His greatness surpasses our feebleness, and to proclaim that He has many qualities that we fail to rightly acknowledge. However, it is hypocrisy to lay claim to having given and done unto God that which we have not, nor will. Let us declare that God is completely trustworthy--but also that we have not trusted Him as we should. Let us say that He is always good, but that in our failures we do not believe His goodness as we ought. Let us assert that God is loving in all His ways, but that we often do not understand it, and in times of trial even doubt it.

We are not equal to the task of demonstrating the fullness of God's perfection--we fall far short. And God knows that, and has not put such a burden on our shoulders. It does not rest upon us to be perfect in love, faith, hope, or goodness so that the world might know those qualities of God. Jesus carries that requirement, and with great thankfulness we can know that God perfectly shows to the world all of His perfections so that none can say they were utterly ignorant of God. It is for us only to acknowledge and proclaim that God is who He says He is, and to humbly admit that we fall so short of the limitless perfections of God and that we are in need of as great mercy as the worst failure we may meet.

If we are all equally in need we may all equally call on the mercies of God.

And in the last measure our great hope is this: our coming through the storm doesn't depend on how much we can muster the good qualities needed--faith, trust, or any such. Our measure of ourselves is not the ultimate standard by which we will stand or fall on the dark day, because we have a sure promise: "if we are faithless, he remains faithful" (2 Tim. 2:13) and again we are promised that Jesus "will sustain you to the end, guiltless in the day of our Lord Jesus Christ. God is faithful, by whom you were called into the fellowship of his Son, Jesus Christ our Lord" (1 Cor. 1:8-9).

I have looked at myself and found that I am lacking in my relationship toward God and because of that I see I cannot stand. But this is to remind me that God is not lacking in His relationship toward me, and because of Him I will stand on the dark day.

Beauty of the sky
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Thunder of the water

When you go through a hard time it can make you bitter. God knows I struggle with that. More than that, disillusioned in a way that gets into my bones. But sometimes God gives eyes to see better than bitter darkness, and more grace than I deserve. Seeing, and understanding, good in this life is not something that comes easy to me.

Learning the stories of other people makes me think about my own. If I am gripped with a sour resentment, the story of another doubles upon doubles the vinegar of my mind. No matter whether it is a happy or hard story, in it I can see some fault with God, some unbalanced scale. But if I am in a better place and seeing with a different sight, then even the hardest times in life benefit from a retrospective meditation. Such reflection brings an understanding brought on a wafting breeze of thankfulness.

I feel such a wind far less often than I ought, but when I read Meryl Comer's book Slow Dancing With a Stranger which chronicled her experience caring for her husband through Alzheimer's, the story gave me an occasion to look at my own experience of Alzheimer's with fresh eyes--and I was better for it. Reading about the hard things Ms. Comer experienced I could nod my head in knowing agreement at some points. On others I saw things I didn't have to experience. But in both cases my fresh perspective from time's distance gave me a clarity in heart I don't typically glimpse. I was reminded of how much worse it could have been--both for my experience, and for Ms. Comer. I read Comer's book of hard things and looked over my shoulder, surprised to see mercy there.

More than that, I was reminded of goodness, goodness that in hard times we often fail to see.

Don't misunderstand me--Meryl Comer and her husband when through difficult times in their Alzheimer's story. And my own time of caregiving was far from a carefree jaunt. Those journeys we make through rock and wilderness mock any trivializing. But there is the oddest experience in stepping up to the edge of the abyss. The darkness is there, and how it gapes at you, the ground falling dizzingly away at your feet. There, with your feet perched on the lip of all that might be you realize with such breathtaking vividness how much you are not in the abyss. There, perched on the edge, one feels a special deep kind of thankfulness.

If you have eyes to see it.

Near to drowning

There were perhaps a few times I experienced that seeing while still in the process of caregiving. But mostly in my life of caregiving the experience was more like being tied up in a sack while dangling over the abyss. I couldn't see anything, and while in that sack I was being beaten with a stick. It was very dark, very painful, very exhausting, and very confusing. Yes, if I was able to rightly understand my circumstance at the time I would have been very thankful--but when tied up inside the sack of caregiving it is all very confusing and hard to understand rightly.

It is in going back to those times with clearer eyes--outside that metaphorical sack of caregiving--that I can see the abyss and feel a deeper thankfulness for what was, and what was not. In truly trying times the bulwark of our comforts thins like a rusted ship hull and in the disintegration begins a dim grasping of how great are the horrors which exist, and how it easily they might come upon us. In that recognition settles the realization that horrors unimaginable hang over us and there is nothing, absolutely nothing, in our grasp to keep them at bay. Then, in that recognition, if the inner eye snaps open and your truly see--oh, then the difficult times are suddenly seen so clearly as mercy, a mercy so deep and so vast that words cannot grasp it.

The times which lash us like discipline teaches the dullness inside us and wakeness that which sleeps. Mercy is not stupor, though oft we think it so. It is not the rest a drowning man feels as he slips downward, downward to the last sleep. Mercy is being brought through the storm. The wind and the storm tell us what is, and what is coming, like no comfort sleeping will ever educate.

The paradox is, this thing can't be shared with those outside it--not fully, not in the depth of indwelling which comes with personal grasping. Those outside the scourge of travail can only see that which strikes dread, whatever the mask it wear. Only when you have entered that crucible might you begin to understand how lacking our grasp of horror is, and gain a double portion of mercy; knowing the difficult as indeed a gentle mercy compared to what might be. It is only there in experiencing the burden that you can know with an experiential tasting how what you went through could have been so much worse, and so futile. In knowing deliverance from that depth, and the good which the hard has become, this fashions a depth of gratitude which does not bend knee to simple words.

I could tell you how thankful I am for many distinct things in those hard years I went through. If my memory did not fail me, I could fill books with distinct events from day after day. Thankfulness that Grandpa was not violent, thankfulness that we did not face horrors in a hospital. I could dig up little things, big things, simple things and complex things. They would all be true. I could move on to other parts of my life, other hard times, and what I would say about those hard times would be true too. But those are feeble statements that don't really capture the knowledge that comes from realizing the depths of horror that is capable in this life--and the truth that we are all spared from experiencing that, in this life.

Yet how often it is that in my smallness I scream at God. In the sea of life's trials the billows roll and horror grips me that does not comprehend the deliverance from drowning. And so yet again my feebleness reminds me of the grace, the mercy, of eyes that sometimes are enabled to see.

The Other Side
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The walk of old age

Recently I read the book Slow Dancing With a Stranger by Meryl Comer. It is the story of how Ms. Comer lost her husband Harvey to early onset Alzheimer's. Any story about Alzheimer's is a tough read, but those that deal with early onset Alzheimer's--as Ms. Comer's book does--can be particularly hard. Early onset Alzheimer's takes a person in their prime, and often progress with a brutal swiftness. Slow Dancing With a Stranger was not short of hard moments, but in the end I was glad I read it.

I am not always glad I have read such books. Since I am person writing a book about Alzheimer's, conventional wisdom is that I should read as many books as possible on the topic. Know your field, is the advice. Know your competition. I find that hard to do. Reading Alzheimer stories brings back unpleasant memories, but more than that I feel particularly sharp regrets over the hard things people experience in the books I read when I know that if only they had known better--if someone had taught them better--everyone would have suffered less. I am not a detached or ignorant reader, and so I bring extra baggage. When you know what could have been better it is even harder than when the story events seem foreign and confusing.

In some ways Meryl Comer's story reads like a horror story of every caregiver's worst nightmare. Her husband became sick at a young age, and Ms. Comer quit her job and cared for her husband for twenty years. That's right. Twenty years. Career abandoned, life on hold for twenty years. A person facing the caregiving future, or someone two years into the process, dreads imagining five years, much less twenty. It sounds impossible. It sounds horrific. And yet Ms. Comer did that, and by all measures appears still in her right mind and reasonable health.

When I read a book like that a little voice inside me questions why I am writing. When I read the story of someone who has gone through an Alzheimer's experience which dwarfs mine--I question if I have anything to add. Can I really speak to the experience of others, or do I just have a bad case of hubris?

The doubts then start gnawing more. The experience of everyone is so different, their life and their situation unique. Who am I to think that I can speak from my situation into theirs? Am I just insulting people by thinking I have something to share which will benefit their life?

The doubt can grow toxic. But what I must remind myself is that life should not be a comparison game. It is not a contest to see who has the worst wounds--and if you don't win then yours don't count. No, that is not what life is about. We should not measure our suffering on a scale against other people. Is my suffering worse than yours? That is the wrong lens to look at any suffering.

The truth is that every life matters, and every story has meaning no matter how seemingly big or small. Every life is etched with truth if we have eyes to see it, and truth always matters and always has importance. Our personal story does not have importance because it is the most terrible story of suffering, or because it is the greatest story of success. Every story is important because God is working in every story, and where God is present you cannot call things of no importance.

Remembering this is a good encouragement to me, and a good reminder to humility. The encouragement is the reminder that it doesn't matter if my story of Alzheimer's doesn't feel like the greatest or longest, or most severe (and no doubt it isn't). But being "the greatest" in anything isn't why anything in my life, or about me, is important. That isn't the reason why my story is important, and its value doesn't come from the number of points earned for suffering. The value of my story comes from the fact that God did something there, and that reality can speak into the lives of other people, even if by some measure they have suffered more, or differently.

The reminder to humility comes in that the value of my story doesn't come from my awesomeness. It doesn't depend on my awesomeness or come from it. Even if I don't go on a religious rant in my book (which I don't) it is still a story about the mysterious and amazing things God does in a small and yet greatly valuable lives we live. So I don't need to justify the worth of what happened to me. God already has because what God does is never worthless. The same is true in your life, whether you write a book about it or not.

It isn't about you. When I remember that it is very comforting because then I remember it doesn't rest on my shoulders.

A journey of mercy
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Those who are old enough (or young enough) know of the "Choose Your Own Adventure" stories which were popular at one time. I think I probably read all there were, though I definitely consider some to be far better than others. I didn't care much for those that seemed to have wimpy, or overly-moralizing story lines. Something I also did as a child was play imaginative games with my siblings. I say "games" but often these were imaginary adventures where I would talk about what I was doing, or what was happening, and my younger siblings would listen transfixed. Really, it was story telling under a slightly different guise.

These two different examples both fall into the category of emergent stories. The idea of emergent storytelling is that the story arch is not fixed in advance--rather it emerges dynamically while it is being read or experienced. The "Choose Your Own Adventure" novelettes of my youth fall on the more static end of this category spectrum (while there were multiple story possibilities and endings but it was all printed up and fixed in advance), while the adventuring I did with my siblings came in on the far more dynamic end, seeing as I was making up things on the fly.

Since those heydays of my childhood I have moved on to the staid respectability of writing polished stories. The narrative I present is crafted, and re-crafted until it is smooth and without disjoint. But I have never entirely forgotten about the story telling adventures of my childhood. While sloppy in their form, the participatory adventures I told to my younger siblings had their own particular thrill. There is a total disregard for critical analysis as a child (maybe with an exception for my older brother Teman, who came out of the womb with critical analysis) and with that disregard comes a certain wild abandon in embracing a story. I have since wondered how it would be if I revisited that method of story telling as an adult. Is it possible to return to Neverland?

My presumption has been that an adult surely could tell such emergent stories to children (I think plenty of parents do it all the time) but I wondered how well an adult might tell such an emergent story to other adults. Is it possible? I have suspected that it is--by at least some people. I think that was often the root of many stories told in ancient times around fires. But could I tell an emergent story that others might be amused to partake in?

So I decided to give it a try.

Now, admittedly this is not a serious narrative effort. It is more along the lines of an experiment to see if I am still able, in my stuffy old age, to string together a coherent and passably engaging narrative. The depth is no more than one might find in a light adventure story. Call it a choose your own adventure for adults. It isn't quite as dynamic as telling a story live to your younger siblings. The mechanic for the "emergent" part of the narrative is that at the end of every section the readers get to vote on what will happen next, among several possible choices. I don't think this is as engaging as interacting with an audience in person, but it is the balance I am trying to use with technology. We'll see what happens.

If you want to read (and play) along, head over to http://adventure.creative-vapors.com/2014/09/10/awakening-cry/ and read through to the most recent entry. On the most recent entry voting is typically open from Tuesday until Friday. After that voting closes and I write the next installment, it is posted, and the process repeats.

Currently the story is in the early stages but it is starting to take shape. If you check it out I'd be curious to know what you think.

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Fire in the stove

Flammable Paradox

I see men walking
like trees
upon whom the Cursed hung.

Judgment redeemed
set afire
for purified ingots.

One morning this week found me sitting in the dining room, empty breakfast bowl in front of me as I stared at the wood stove fire. I guess my line of thought started with pondering why many people (myself included) find a strange beauty in fire. There is a fearsome and awesome thing to fire, and beauty too. It is a sublime combination, and as I thought I wondered why this was so.

Why did God make it so that we naturally are drawn to fire's mysterious beauty? Fire is destruction and on first reflection why should we find beauty in destruction, whether it be the immolation of wood in a fireplace or a star expending itself. And yet we do find powerful beauty in fire, in light. All light comes from some sort of fire, the rending of something torn asunder whether it be the inferno of wood molecules or the dissolution of countless stars. Without those countless dyings creation would be a cold dark death. It is only in the dying of something that light and life exists.

The most common Biblical use of the imagery of fire specifically is for judgment. As we see things in the natural world readily destroyed by the awesome power of fire this is an analogy that we readily understand. But there is a tension too, for if in fire there is only the truth of God's wrath why are we so drawn to it, and why has God used fire with its light and warmth to demonstrate it as the source of life?

How can judgment bring forth life?

As I sat in my chair, milk damp bowl forgotten as I watched the flames, I kept thinking about how the Bible uses fire. Given fire's common use as a symbol for God's judgment, it is quite remarkable that on the day of Pentecost when the Holy Spirit descended on the followers of Jesus it came as tongues of flame settling on them. When the Holy Spirit descended on Jesus at his baptism it came in the appearance of a dove. Fire is quite a different matter, and most certainly there is a reason for this differing imagery.

We gain some understanding of the choice of fire for the Spirit's coming on the disciples if we look closer at the use of fire in the Bible. There are places in the Bible where fire carries a purely punitive conception--such as the fires of hell. But often in the prophetic literature fire is used in terms of a redemptive, restorative, judgment. One example is found in Zechariah 13:7-9 where we read:

“Awake, sword, against my shepherd,
against the man who is close to me!”
declares the Lord Almighty.
“Strike the shepherd,
and the sheep will be scattered,
and I will turn my hand against the little ones.
In the whole land,” declares the Lord,
“two-thirds will be struck down and perish;
yet one-third will be left in it.
This third I will put into the fire;
I will refine them like silver
and test them like gold.
They will call on my name
and I will answer them;
I will say, ‘They are my people,’
and they will say, ‘The Lord is our God.’”

In this passage fire is the very thing which makes the people pure and perfect (removing the bad and leaving only the good) and restores their relationship with God. It is this idea which informs our understanding of the fire descending on the disciples at Pentecost. It was the sign of their purification. And the imagery struck me; if to a man with not yet full seeing eyes we can appear as trees walking, than how much more do we appear to earth-dimmed eyes like logs set on fire by God. We burn oh so brightly, gloriously, and in our passing only ash remains.

The line of thinking quickly brought me back to the paradox of the cross. For it is in that great act that we see death, destruction, and judgment bring forth life, restoration, and deliverance. Metaphorically, on that cross Jesus was alight with the fire judgment of God as he became cursed for us. It was an ugly demonstration of the consequences of sin, and it was a beautiful demonstration of the reality of love. It was the consummation of death, and the seed of life. The death of Jesus Christ was both, and it is a paradox that no natural mind can explain. It is a beautiful paradox, and in looking at that little fire on the stove I saw how it existed as an example paradox of that paradox--a sun blazing light in its fiery death, giving life to this world, right down to the logs in my fire warming the house. We are transfixed by the beauty of fire because in it we are given a dim recognition of the beautiful mystery found in redemption--that in God the judgment of death brings revelation, redemption, and restoration. It seems impossible, and yet it is. How fitting then that God would give us fire, a sign of judgment which shines forth the mysterious beauty

It is not that in spite of death God saves, for the death of Jesus was not merely an obstacle that had to be overcome. Rather, it is through death that God saves, for the death and resurrection of Jesus was the very means by which God saved. This paradox is not happenstance. Yes, the cross of Jesus shows the mystery of God. But more than that it shows the power of God in that by His hand the negative becomes positive, defeat the greatest victory, and we can delight in the hope this teaches us about God's ability to thwart every intention of evil.

When Satan enticed Man and Woman into sin in the Garden of Eden, judgment was their just due (and how Satan took pleasure in that). But for all Satan thought he had thwarted God, it was that very judgment of separation, the very fire of wrath, that God used to reconcile the lost back to Himself. The greatest blow Satan could think to strike against God--whether it be the Garden of Eden or the Cross of Jesus--was used by God to bring the greatest glory to His name. Not only are we saved from judgment, but that very salvation was purchased by means of judgment.

We look at a fire and if we have eyes to see it tells us of the mystery of what God has done--and what only God can do. For the fire in the hearth will soon go cold, and only dead ashes remain. And if this creation continued long enough the stars too would burn out. The fires of this universe are a picture, and they are beautiful, but their ashes remind us still that for all the beauty of ephemeral flames we are looking for the blazing glory that will never end.

Fire in the stove
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Grandma's house

The past, fickle thing, refuses to remain in place. What stories it tells, who can hear? Time unspools, always moving further away, further behind. Memory too, like time, runs from us, but the ghosts of our minds have their own different pace. In that tapestry some recollections remain fresh years later while others fade quickly. History gone cannot be called again to present as it was once, but walking again in places where long past yesterdays were written does bring a reflection different from merely traveling the mind's backward fleeing path.

Almost four months ago Grandma's last day slipped away. Her house emptied, possessions dispersed with the efficiency of rats fleeing a fast sinking ship. The empty shell was prettied and put up for sale. From there the process slowed, a waiting and a plodding through the process of divestiture. Into the limbo I returned on occasion to mow the lawn and stir the inner soup of past and present. So summer waned and autumn slipped through. This week I made what may be my last trip, if the sale finalizes as it should. Then no more to a place where the ribbons of memory lie unraveled in heaps, draped across the rooms in a collection only the mind's eye can see.

The physical act of walking up the steps triggers a sense almost like walking back in time. For that flickering moment it is as if I am returning as I did so many times before to a house of sickness, brokenness, and my own rut routine. Then the emptiness greets me, the past winks out, and I am here in the present with the barren places. The carpet in my old bedroom still carries the impression of my desk, fresh and unfaded, much like the imprints on my mind. The ghosts of the past are young here, and hover at the edge of eye and mind.

Someone might ask what I feel walking through the empty places, marked from eight years of my life. The answer is that I feel more and less than one might expect. I'm still learning about emotions, but one thing I have learned is that they are more sublime, deeper, and nuanced than the rush of tears or joy we so readily identify. Emotions do not come only in primary colors, and the pictures painted can be more muddy, complex, or more unclear than we might like. The mix of hue and shade embody profound things, things in us we yet do not understand.

The texture of what I feel walking through that empty mausoleum of modern construction is like the whisper of a thousand voices in cacophony, or the intermingled scent of disparate aromas. I would tell you I felt nothing. But then in the open space of aloneness there is a stirring, the tremor given by deep things I can't yet interpret.

Perhaps it is a song of sorrow, the notes of loss, regret, and hurt playing their faint tune. Is that why I hear? A bit of fondness, maybe, too, for not all things in that place were ugly in their time. All of it, good or ill, carries the weight of years. The taste of memories defies the apish parody of simple words seeking to mark in clear boundaries on that which truly plunge in deeper wells. Like a melody the things felt flows through heart and soul, near and yet beyond words.

I feel nothing, and yet everything--but so faint as to miss it. But there is a reason we feel it, and find it a riddle of things not easily untied. Life is the learning of what we have been taught and yet do not understand, and those are a wave tossed sea in our soul, highlighted in crest by the foam which emotions wrought. So in empty spaces are we taught. And so too from the empty places would come the eye opening we seek, if only we would listen. I hope that I am listening.

The empty places
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