Which life do I want...

Today was the first time I did not beat my head against a brick wall whilst creating the PDF versions of the newsletter for Lutherans in Africa.  Sometimes, since I am certainly not a designer, I create something an less-than-efficient manner at the outset.  If it is something that is going to be repeated, such as a newsletter, creating a template of sorts is always best.  Because I am so tired, each time I just replaced the text and photos.  But the bottom of the last page, which has the contact information for the mission, was not static.  Each cut and paste would mess up the alignment of the contact text within the color bands across the page.  Hours and hours and hours were wasted fixing the alignment until the last issue, where I took the time to create a static element for the contact information on both the English and Finnish versions.  No more tripling or worse the work load of each newsletter.  The smart move would have been to create the static element initially.  The almost smart move would have been to do so on the second newsletter.  Smart.  I am not that anymore.

In less than three months, I was award disability by the Social Security Administration (SSA).  I was fully prepared for two or even three denials before gaining it.  I was not ... at all ... prepared for how brutal the application process was.  I will say that I have yet to receive the status in writing, nor was the promised initial  payment deposited into my account this past week.  Yes, I am worried.

The process is filled with paperwork, filled with exams, and filled with agony.  For me, I was completely caught off-guard by how difficult it would be for me to document the changes that have happened in my body and in my mind.  There was one I have not even yet told my primary care physician.  Because I am ashamed to be that person.

Much of my struggle has been facing that I really am no longer the person I was.  Grief is a long and winding road.

The woman with dysautonomia's whose blog I liked so much likened the condition to being on a run-away carousel.  I have long wondered why her blog ended so abruptly.  I think I know now.  Life becomes too overwhelming.  Over and over and over she determined that she would keep all the things associated with dysautonomia from affecting her life.  But it did.  It does.  Few doctors know the condition.  There is no treatment.  You search for drugs with side effects that might possibly help.  And you despair.  Because few medical people understand.  Because there is no treatment or cure.  Because you are declining physically and cognitively in a most miserable fashion.  Because no one understands.  Because you are alone.  As the condition progresses, just how alone you are is made patently clear.

The metaphor is perfect.  There are you are, riding up and down and round and round and round.  It is dizzying.  It is disorientating.  And it is impossible to hold perspective.

I was nervous about the psychological testing the SSA ordered. It turned out that of all the cognitive function testing, the SSA was only interested in memory.  The taking of the test was devastating.  From the immediate award of disability thereafter, I am fairly sure the results were at least as bad I surmised.  Question after question after question I could not answer.

There is a blankness in my mind when it comes to remembering things.  Some is still there, but much is not.  And new things do not last.  I had to put signs up to remind me to turn off the stove/oven, to close doors, to take medication, to give Amos water....  I do not remember.

I do not remember to pay my bills. I do not remember that I paid my bills.  I do not remember to check. I do not remember how to check.  The SSA association determined that I was not a fit payee.  I had to find someone who would be willing to serve as one, hire a payee, or appeal the decision.  No one I asked wanted to be a payee for me.  No one was even willing to be a part of my appeal by committing to spending an hour a month double-checking the automatic payments and seeing if there were any non-automatic bills, such as a medical bill.  No one.

I was not offended by the SSA's determination.  Though I did believe and believe still that if I had just a bit of help then I could remain in control of my finances ... at least for a while.  It is the remembering, after all, that is the worst.  Hiring someone to act as payee is really not an option.  As it is, my monthly medical expenses still outweigh the disability payment by $1,000.  So, while my living expenses will be covered, I am still in a world of financial trouble with the medical burden.  Medicare will start August 2013, but that will only reduce my burden by a fraction.  Therefore, I still will be winnowing down my meager retirement, month by month, until I can no longer afford to be me.

No matter what you might think about Medicaid and Medicare, they are not comprehensive and they certainly do not cover the chronically ill.  And there are huge, huge gaps for those not elderly, not head of household, and not a parent.  To be "young" and disabled is to be, well, someone else's problem.

In any case, I reached a compromise by placing myself beneath the supervision of a social worker, which is the same as placing myself beneath the supervision of the government.  I have no friends or family willing to help me remain independent, to help with bills or appointments or keeping the household.  That is something I had to admit, had to say out loud to so many people, as I went through the application process and as I went through the payee process and as I went through the social worker registration process.  Saying it never got easier.  For me, it got worse.

I have been in bed since Thursday, since the electrician left.  I have been in bed because I am trying to decide which is the more tolerable misery.  The digestive nightmare had reached new heights, with hours and even days of nausea, on top of the bloating, pain, vomiting, and diarrhea   The constant nausea is as bad as the migraine pain in that it is all consuming and reduces me to a huddled mass of misery.

The daily dose of erythromycin solution does help, but it conflicts with my daily doses of theophylline, which helps to lessen the fainting, near fainting, and dizziness.  In short, I can take one medication and not have as much innards misery but struggle to remain upright or I can take the other medication and walk around if it were not for the agony in my mid-section.

Right now, I am choosing the erythromycin, despite the additional problem of cardiac and blood sugar side effects.  Right now, I am choosing to live in my bed, save for trying to eat and letting Amos out.  In a sense, I am trying to choose which life do I want.  Neither is one anyone would want.

I did not remember that there was a final entry to that woman's blog.  Perhaps I did not see it because I had found the blog by an entry early one regarding migraines.  I find it interesting that what I surmised is laced throughout her last words.  I think about her a lot.  It is hard to find anyone who does understand.  It is equally hard to find someone who will try ... without trying to fix you, without calling you a liar by denying how you are doing or how you are feeling by telling you that you look fine, look great, look ... anything but what you are trying to say.  She writes:

9:45 pm

75/57 101 bpm (standing)

It hit me like a pile of bricks smashing down on my body tonight. It has been building for days and it finally landed on me: I can't get off this carousel. Another metaphor: Every morning, day and night I fill a pool up with water, then I go to sleep. When I wake up, I go to the pool and it is empty. And I fill it back up again. And on and on and on. The damn pool never holds the water over to the next day.

Well, I am tired of filling the pool with water and I'm tired of spinning around on the carousel, it's making me dizzy and giving me a headache. But I don't know how to get off. I just know I want off.

The emotional drain of waking up every day with varying degrees of pain from the migraines while trying to stay on my feet without passing out has. gotten. old. It is making me an emotional wreck. All the medications are making me an emotional wreck. Where amI? Hello? Are you in there anymore?

What do you even want anymore? The thought of having a relationship, always a minefield in the best of health, scares the living crap out of me now. I probably wouldn't even remember hisname.

And the job? I won't even go into that, but let's just say I keep playing the lottery...

The absolute worst part, the part that is killing my soul right now, is that I try, every day to overcome the pain, the dizzyness, all the symptoms, and I even have some success. And for some reason, my mind thinks ok, then that means they won't come back, right?, I've won. But then I go to sleep and the sun comes up and I wake up and I feel the burning in my head again, and I stand up and I feel like I'm walking along the side of a high cliff. And I know I have to take the damn medication and drink the glasses of water, and eat some salt, in order to leave the apartment-again. And I know it's going to take two hours before my head feels human-again...

Why won't it all just go away? I want out of this body that is holding me back from doing and feeling so many things. And to make it just a little bit worse, no one can understand this but me.

Boy, do I understand why she wrote what she wrote and why she stopped writing.  I did myself, after all.  But writing helps me.  And this really is the only record of my life over the past 11 years.  A record that fire or flood or personal computer breaking will not erase.  So I aim to start again.

But it is too much work to censor what I think and how I feel and what is happening to my body as I have been, to a certain degree. I am not brave enough, courageous enough, to capture all that I want to be remembered ... for me.  What I can, though, I will.  Like the bridge.  Somehow I will find a way to write about the bridge.


Lord, have mercy.  Christ, have mercy.  Lord, have mercy. 

The long goodbye to self...

I have tried, many a time, to talk about what it is like to know what I am losing.  In the mental exam, the psychologist was stunned that I had a Ph.D. and that my IQ *was* (for surely it *is* no longer) 151.  This was after talking with her, but before the quiz questions.  You see, with her, she had questions I was to answer and I had no way to prepare, no way to rehearse, no way to cover up all the coping and all the confusion.

One of the quiz questions, as I wrote previously, was the number of weeks in a year.  I tried. I tried really hard to find that answer.  Yet it was elusive.  Panic begins to set in. Panic and horror and despair and fear so great there are no words either to describe it or to contain it.  Another question is a good example of the gaps in my life.  She asked me to tell her anything from the news in the past week.  The news was like a blank slate to me.  Any topic.  Anything I could have answered.  Each day, I read through the stories on NBCnews.com, CNN.com, FoxNews.com, and BBC.com.  I had seven days of stories and could not recall a single news story.  Nothing.

Repeating strings of numbers after her was difficult, but repeating them backwards was an impossibility.  Trying to hold the numbers in my mind and reverse them at the same time was too difficult.  At the end, she kept telling me that she was sorry...very sorry.  I honestly believe she meant it. I honestly believe that she understood.  Who I was is gone.  And when I cannot prepare and rehearse and keep control of what is said, what I am left with is covering by nodding my head or murmuring affectations as if I do understand.  Right now...it is a horror because I do know what I should be able to do.  I told her that I wish I were already gone...I wish I no longer knew who I used to be.

I do not know if I am repeating this, but at the end, I couldn't figure out how to leave.  She led me down the hall and turned the corner.  By the time I got to the corner, she had passed through one of the four doors.  I panicked.  I didn't know which door and I was falling into that dark place where my emotions make me even more insensible and fear blinds me.  I asked out loud,  "Which door?"  Several times until I was shouting it loud enough for her to open up the receptionist's office door and point to the door very clearly marked exit.  I saw no sign. I only saw four doors.

This is a great episode on Alzheimer's, on cognitive loss in a brilliant mind.  I have been watching "The West Wing," in part because the president has MS and his disease becomes more pronounced as the years of his terms pass.  I have also been watching it because I know it has some brilliant writing, both in the scripts and in the actual episodes.  Language...words...the craftsmanship of them is almost like an extra character in the series.  I have laughed and wept and had moments of deep thinking, some about my life and some just about government.  For example: hate crime legislation.  Should we really try to criminalize thoughts?  Is murder any worse if it is done out of racial hatred rather than mere hatred?  Is a husband who murders his wife a better person than a racist who murders the object of his derision?  In the end, both are dead.  It was an interesting episode.  Especially since, well, I am not a democrat and the show is written from a democratic perspective.

Anyway, this was an episode with all three.  It has glimpses of things I struggle with in CJ's father...a man who sometimes is lost and sometimes is aware of what he is losing.  There is a great scene in the car, where CJ tries to confront her father on his inability to be alone at this point:


CJ:  [Yelling]  You are holding on to something that— 

Her Father:  [Yelling over her] What am I holding to do?  My conscience identity! Tell me, brilliant woman that you are—

CJ: —can’t be willed way by sheer force of personality, Daddy!

Her Father:  —would you hand over those things without a fight?  I need a little more time, CJ.  If I let it in at its own pace, it will just get dark faster.

There is another scene where he is admitting to CJ's date that he cannot remember things. He holds up a picture of CJ as a child and says, "I  cannot remember who this is." CJ looks on with such sadness and such fear.

I understand.  It is why I took all the photos out of my albums last year and boxed them up.  Too many of them...people I *know* were important to me...people of years rather than in mere passing...are gone to me.  Strangers.  Blank spots in my mind.  Just a few weeks ago, I mailed many of them to my sister and to my niece because they do remember and wanted them.  I really should send them all.  Looking at them only sends me to the dark place.  

The movie "Iron Lady," brilliantly acted by Meryl Streep, is not so much about Margaret Thatcher's life as it was the decline of her mind.  We see who she was in the moments where she is aware of what she is losing...which makes the moments where she is unaware more poignant for us.  In those moments, Meryl Streep so exquisitely portrayed the confusion and the attempts to hide it...if you were looking.

This episode is another great example of cognitive loss in an intelligent mind.  Brief scenes where, if you are looking, you can glimpse the agony from both sides.

The connection made in my mind ties into the information I have been posting about trauma and the brain.  The trauma brings out the instinct to fight, flee, or disassociate.  Cognitive loss does the same.  Being aware of it, finding yourself caught in it...it is like being under constant assault, being attacked without warning.  I think that the insensible insistence on remaining independent is not so much about independence as it is about fighting the attacker or fleeing the loss or finding safety by choosing to disassociate from the battle.

Call me arrogant, but I truly wish I was never smart in the first place.  Were I not, I honestly believe this would be easier.


I am Yours, Lord. Save me!

I did this...

Forewent the GREEN chair today and just stayed in bed. Given how sweaty and trembly I just got from slapping together an enchilada to put in the oven, that's probably a good idea. I dread the thought of the work of fetching it when it is done.

I have been facing done hard truths about my failures lately, and my visit with Becky smacked me upside the head with another one: I don't know how to have
guests without feeling the obligation to wait on them, cook and clean for them, and go out and about with them as much as they want (even going so far as encouraging them to do the latter). I exhaust myself in the process. And the difference know us that my tolerance for pushing myself has greatly dwindled. So, by Thursday, I fear I was not all that kind and gracious. Foremost in my mind was how physically exhausted I was and how much constant pain I was in from too much standing. By Friday, I was a mess and even more desperate because I was grumpier than I have ever been with the wonder that is my friend Becky.

I simply do not believe anyone would want to visit me, knowing they would need to cook and clean for themselves, do their laundry, and go out without me if outings were frequent. Having seen how hard it was for her to push me at times, I don't believe anyone would really want me going out and about with them. And I don't believe anyone would want to visit me, knowing that I would be napping two or even three times during the day.

Only keeping up the pretense of being the great host really isn't possible anymore. I think anyone other than Becky would have gone running for the hills...maybe even by Wednesday.

It is a very good thing that Amos is okay with a puppy momma who can do little else but sleep, nap, and snooze. I cannot fathom, now that the pressure I put on myself to serve and be the great host is no longer keeping me upright, how long I will be recovering this time...more standing in 5 days than I would normally in probably 5 weeks and not a single nap.

I did this. Me.

I fail at asking for help. I fail at trusting. And I really only have a life in the GREEN chair with Amos. The price for pretending otherwise is becoming more than I can safely pay.

[Note:  I always correct the errors on my blog when they are pointed out to me.  This I first wrote on Facebook and, thus, could not correct them.  The wrong words shame me and they cause my fear to rise.  But I am leaving them in here this one time because I want a record of them, a record of what happens even though I spend several hours composing and editing a short piece. Before, this would have taken me just a few minutes to write...and there would be no errors.  But I am no longer that person.]

I am Yours, Lord.  Save me!

Let there be rest...

I did not technically get out of bed yesterday until after 10 PM. I was that tired. I still am, though I do not regret digging up bushes and such. I am mildly interested to note that the constant tendinitis in my elbows did not flare as much as I feared, but the spasticity in the back of my legs became most fierce.

I am supposed to be stretching them every day. However, the pain is so unbearable just to sit with my legs straight in front of me that I do not. I try from time to time, but when I really try, I faint from the agony. And when I do not faint, I hate my body so much that I simply avoid doing that which would help marginally.

Mostly, right now, I wish not to move my legs at all. Mostly, right now, I wish for a heavily muscled Gunther to be pommeling on the back of my legs to help with the misery. What I have, though, is an Amos, whose soft, fluffy, lavender-smelling warm body gives me comfort as I endure.

Still, I would do it again. In fact, my friend has more bushes she wants gone, but I think...hopefully...they will not be too difficult to do. Eventually.

I did have this primary thought about the yard work: Truth be told, I think the reason I dug up bushes on Sunday was that I was forced to use a motorized wheelchair shopping cart on Friday. I don't want to be that person. So, I was not so much serving my neighbor as I was a little girl having a petulant fit of temper over something she did not like.

Now that I have maneuvered one of those carts, I believe I will continue to use them.  I really have no choice in the matter some days.  Perhaps...sooner than I would like...most days.

I do not know, do not remember, if I have blogged yet about John the Baptist.  Nevertheless, I thought I would do so now, for in the past two months, I have been thinking deeply about him, about his life.  By this, I mean, I have been thinking deeply about him, about his life, whenever someone tells me that God will take care of me.

Sometimes I wonder at the things I never noticed, never pondered before I had to face such pain.  While I have blogged about the innards writhing, truly I have not yet found the words to paint an adequate picture, to truly give the reader real understanding.  More than the nausea and diarrhea and bloating and gas, to me, is the agony of the weight of anything--even the lightest material--on my abdomen.  Because I do not regulate my body temperature properly anymore, I cannot simply lie there naked.  Because of my past, mentally that would not be possible either.  In either case, it is not possible.  So, I try to prop my clothing and the bedding (I have covers on the bathroom floor as well) away from my body, but still try to stave off the agony of a cold spell.  It is a lose/lose situation.  The proverbial catch-22.  Yet the entire time, the entire battle of writhing from the disruption of my digestive processes, my mind is screaming that it is simply not possible that even the weight of sheer fabric can cause so much pain.  It is absolutely, positively not possible.  Yet it is.

All that is to say that whether it is my innards, the migraines, the chills, the arthritis, or the spasticity, I have become intimately acquainted with myriad types of oft near-unbearable pain.  That pain has given me food for thought. 

Because of my weakness and the wrong theology heaped upon me in the past, much of that pain-filled time is spent trying to figure out what I have done wrong, how I can be better.  Or I spend the time beating myself up for being so bothered by pain that is small in comparison to those suffering from, say, bone cancer.  But, of late, in between those two lines of thought, a third has emerged:

Jesus did not save John the Baptist from his pain, from his death. The one greater than any other man born of woman had his head cut off and served on a platter while Jesus walked the earth.  The one who heralded God' son to the world had his head cut off and served on a platter while Jesus walked the earth.  The one who baptized Jesus had his head cut off and served on a platter while Jesus walked the earth.

John had his head cut off and served on a platter because we live in a fallen world.  John had his head cut off and served on a platter because we cannot escape the fruit of the sin of others born in our own lives.  John had his head cut off and served on a platter because Jesus walked this earth.

Wait?  What?  I'm blaming Jesus?  No. I blame sin.  Sin stands against God, against the Living Word, against Emmanuel.  John happened to be alive when Jesus was walking about.  John happened to speak the truth of sin and of God.  So John happened to have this head cut off and served on a platter.

Jesus surely loved John.  John surely was very, very important to Him.  Yet Jesus did not prevent his humiliation.  Jesus did not spare him pain.  Jesus did not save his physical life.

Perhaps I am reaching a bit here. I am not, after all, a theologian, but I do not believe it is a coincidence that in the same address where Jesus tells how great John was, how much greater the least of those in the Kingdom of God is than John, He finishes by saying, "Come to Me, all who are weary and heaven-laden, and I will give you rest.  Take My yoke upon you, and learn from Me, for I am gentle and humble in heart; and you shall find rest for your souls.  For My yoke is easy, and My load is light" (Matthew 11:28-30).  

Stewards of the mysteries of God.  My ways are not your Ways.  The yoke of the cross is easy and light.

I do not have the words for why I think about John being beheaded while Jesus was there to save him.  Nor, really, do I have the words for how that changes the moments of my pain.  And what I am trying to say here might seem to go against the theology of the cross when that is not my intention at all.  However, I shall still pen the words chasing themselves about my head at the moment:

Faith is not about suffering.

Faith is not about not suffering.

Faith is rest.  Rest that is having your head cut off and served on a platter.  Rest that is living your entire life without ever knowing great pain or suffering.  Rest that is struggling with barrenness.  Rest that is being showered with ten children. Rest that is riches.  Rest that is poverty.  

For is not the rest of Christ peace with God?  Is not the rest of Christ knowing that the hostilities between you and God have ceased in receiving faith?  Is not the rest of Christ being freed from the Law?

The faith of Jesus, His obedience to the Law in our place, meant that He suffered and died.  But the faith given to us--given in baptism, given in the hearing of the Living Word, given taking in the body and blood of Christ, given by the Holy Spirit--is not suffering.  It is peace.  It is rest.  

I mentioned Betsie Ten Boom a while ago, in thinking about the importance of perspective.  In thinking about faith, I am reminded of her again.  There, in Ravensbruck concentration camp, Betsie was surrounded by the hostilities between man and God, surrounded by the ravages of sin on our fallen world.  Yet, even as her body was sub-coming to those ravages, she was at rest.  Point of fact, though, Betsie was also at rest before Hitler ever took power in Germany.

Lord, I believe.  Help my unbelief!

No admonition, no condemnation...

I slept until 4:00 this afternoon.  This afternoon!  SIGH.  That I do so frustrates me.

Around 6:00, I dragged myself upstairs and put on my puttering-about-the-yard clothes and headed over to Sandra's house.  A while ago, she told me that I could have the day lilies in her yard.  My own lily bed has been long neglected, since I forgot to mulch it last summer, waiting for the lilies to all die back.  Now is the time to do so, especially since the bags of mulch have been waiting in the garage for several months now.  But I have a plan.

Since things started cropping up a year ago last Spring, I have been moving all the stray lilies I have found in the yard to that bed.  When she was here last, my mother suggested that I move them about in the bed so that there is a bit less randomness before I toss down the mulch.  You see, I have day lilies and Easter lilies in the bed, with the Easter lilies mainly in the furthermost third of the bed.  Well, a friend gave me a bird bath, so I came up with the idea to dig up all the lilies in the bed (the soil is ridiculously easy to dig about it) and then arrange the lilies in five sections, with the Easter lilies in the second and fourth sections and the bird bath in the center of the bed.  Since Sandra's lilies are smaller than mine (I never saw them in bloom), I thought I would put them in the center section so as to not over-power the bird bath.

Digging up Sandra's lilies did not take all that long...but giving her a bit of visual rest, in a way that would have meaning to Sandra, took about three hours really hard labor.  First I pruned, because she really, really did not like most of the bushes in her back yard and they were wildly overgrown.  While I inherited a yard with surprising bits of plant joy in it when I purchased the phone, Sandra inherited a mess.  A real mess.

After removing the lilies and pruning and weeding, Sandra realized that I was out in her yard working and came out to visit.  I asked her if I could only dig up two bushes (thinking about how much strength I had left), I asked her if she wanted me to do the bushes I hacked down to about a foot above the ground that she would still see coming and going to her car in the garage or the two bushes along the side of the garage that had died.  She chose the dead bushes.  I dug them up.  Then I dug up the bushes I had hacked on (thinking someone else would dig them up for her).

As a final bit of work, I asked her if she wanted me to trim two of the smaller bushes she hated that were along the side of the garage so they were more like the ones I had pruned for her.  She said yes, but she also said, again, how much she hated them.  I looked at them, thought about the price I would pay for continuing to work, and set about digging them up.  They were, by the way, ridiculously east to do so because whoever planted them never broke the root ball.  Both of them had roots that still looked like they came fresh out of a pot.

So, I turned my attention to the two rather large hated bushes, thinking perhaps....  They were, as you may have guessed, much, much harder to dig up.  My strength was waning and I knew that point of no return would be coming soon.  Only, I wanted to do something. I wanted to give her something that would mean a lot to her, even if no one else understands. I wanted her to have the visual rest that has been a blessing to me.  I started on one and then switched to the other, thinking it looked more promising and its removal might be the galvanizing force I would need to tackle the other one.  With her help, the hated bushes are gone.

That left this monstrosity of a yucca.  If you are a yucca fan, well, you will just have to forgive me.  I happen to think that they belong in the desert and in homes landscaped in a desert...NOT in the mid-east.  We both started chopping, hacking, and pulling at the thing, which was so large it was more like three bushes.  And then I started digging.  She really did more work than I, but I am proud to say all that remains is the center tap root--the GIGANTIC center tap root.  [I suggested finding some fellow male seminary student to come vent some upsettedness upon the root.]

Before leaving, I also hastily transplant to things for her to give a bit of balance to what was left.  [I hope they survive the moving.]  

A few times, Sandra said she did not want me to do anything that would be too much for me.  I rather bluntly told her that I had already passed that point.  But I knew the cost of what I was doing and I wanted to do this for her.  After all, I spend so much time in the GREEN chair as it is, what would it matter if I am in more agony for a while when I am there?  Really, the only cost I am reluctant to pay, the only cost I will dread, is the agony of the tendinitis in both elbows that now flares if I use my forearms for any length of time at all.  But even that is a price I am willing to pay, knowing that as my friend comes home each day and walks from the garage to her house, she will no longer be laying eyes upon such a messy yard and nine bushes she hated.

Sandra gave me a gift today that was far greater than the lilies and the bricks I took from her yard (to make a flat base for the bird bath in the lily bed).  She let me work.  She did not lecture me or berate me or tell me what to do.  She let me know I did not have to do all that I was doing.  She listened to me as I explained it is better for me to do a spurt of work and lounge about than try to tiny bits over a long period of time.  And she let me exhaust myself in her yard.  You might think that between the weed and bush removal, she got the better end of the bargain, but you would be wrong.  Utterly.

I needed the physical labor, even though I have grown so much weaker.  I needed to be able to give to someone else.  And I needed to not be forced into someone else's idea of  how I am or what I should  or should not be doing.

Yes, I am sore.  Yes, I shall also have to wait longer until I can embark upon the plan for my lily bed.  But I shall endure the pain in the coming days with a bit of joy, knowing that Sandra is enjoying visual rest brought about bushes that she hated--and the thought of the work it would take to remove them--being a thing of the past.

No admonition.  No condemnation.  Just freedom.


I am Yours, Lord.  Save me!

One of those scary things...

Sometimes I wish for days simply not to have happened.  This was one of them.

You see, I sort of have this deal with my body.  The writhing and such ends come morning.  Sometimes not until 7:00, but it ends.  That's the deal.  Only sometimes my body renigs on the deal.  Sometimes come morning the pain, the nausea, the misery does not end.  Today was one of those days.

Being a rather poor puppy momma, I ran out of Amos' food.  Of course, I have had it on my shopping app for a few weeks.  I have chanted that I needed it as I drove over to Jefferson Pointe.  I have "remembered" that I needed it while shopping in Target and in Wal-mart, both oh so terribly close to Petsmart.  Yet I forgot on the way to the car. I forgot while driving through the parking lot.  I forgot while passing by Petsmart.

So, even though I had been up all night and could not find any clothing that did not heighten my agony further with its weight against my abdomen, out I went to fetch some puppy dog food...and accomplish two other errands.  Sometimes, when I am most miserable, I am desperate to have something positive to which I can point, something, anything, to make me feel less useless.

While going through the organizing, reducing, and recycling, I have set out a few things that I did not want to just donate.  Some are things I would sort of  rather keep.  And some were presents I have had on hand for a while hoping for the recipient to visit me.  So, I have been wrapping up "gifts" for people to let them know that I was thinking of them.  Even if they would rather pass the gifts to someone else, even if I missed the mark on thinking that they would like what I chose, I wanted to send them out.  A pile of packages have been collecting upon the deacon's bench--all wrapped, of course, with recycled mailing materials.

So, I went to the post office, utilizing the lower cost of media mail for most of the packages. Then I drove to Petsmart to fetch Amos' food.  And then I stopped at the grocery store because I needed cheese and sour cream for the bowls of Santa Fe soup I have been eating nearly every day.  Only when I got there, I knew that there was simply no way that I could walk around inside...especially since the dairy section is always the furthest from the door.  My legs were too weak.  The point of no return was swiftly approaching.

Well, I did it.  I got on one of those infernal power wheelchair shopping carts.  I have avoided them like the plague, certain I would run down little old ladies and knock over displays.  Trembling the entire time, I drove myself to the diary section, through the check out, and back to the door to leave.  I did nearly run over two shoppers whilst backing up trying to go around a corner, but no blood was spilt, nor were cans rolling about an aisle.

I still hated it.

I feel as if I should be used to this. I feel as if I should be more resigned.  I feel as if I should not rage against what is happening to me.

On days like these, I feel useless.
On days like these, I feel hopeless.
On days like these, I feel faithless.

When I was having a migraine the other day, I posted the following on Facebook, the first bit as a post and the second as a comment:

Trapped within the throes of a migraine, I become irascible, insensible, and utterly hopeless. I ache in sympathy and empathy for anyone who has ever had or ever will have to endure the violence of pain and sensory assault. And I wonder how in the world Jesus endured the passion of the cross...endured the physicality of a body that exists in a fallen world and all the ramifications thereof during such a wretched experience. 

I am counting the minutes until the second round of medicine and had been shutting out all sight and sound, but I wanted to capture the moment because I really do wonder...actually become awed at the fact..about a GOD willing to endure our existence in this fallen world.

I do think about Jesus living in a human body quite often of late.  I mean, no wonder the Jews did not believe He was God.  What kind of a god would willingly allow himself to be held hostage to a body in a fallen world?  It makes no sense.  It makes no sense to anyone who has to live in this world with illness, pain, heartache, and all the myriad miseries unending that sin has ravaged on the perfect creation of the human body.

For a long, long while...even before I found the true doctrine, I have savored the 14th verse of the first chapter of John.  I savor it not merely because it tells us that the Word became flesh and dwelt among us.  I savor it because, along the way, some pastor explained that the Greek word used for "dwelt" actually means  "tabernacled."  

To me, tabernacle brings to mind the holiness of God and the refuge one can find in Him.  So, there among us, come to us, is a living breathing tabernacle.  I still savor that understanding.  In fact, any time I hear someone read the verse, I automatically correct the reader, if only in my head.  That Jesus tabernacled among us brings me peace.

That Jesus did so in a human body is astounding.  I should not have overlooked the wonder of the bit about the Word becoming flesh.  

We do not know much of His life, but He could not have had a perfect body.  Were that the case, He would have felt pain and been injured and died during the passion of the cross.  Which means, along the way, Jesus most likely suffered the agony of a scraped knee, of sore muscles, of writhing guts.  When talking to Fred about this, he pointed out that if Jesus had not suffered in body, then the Word would be a lie when it stated that He faced every temptation common to man.

Jesus faced the misery, the doubt, the despair of a body broken by existing in this fallen world.  For me.  He did this for me.  In a way, that He did so willingly, knowingly, confirms He was/is a god.  For only a god could choose such a thing.

There were no motorized wheelchair shopping carts when Jesus lived.  But surely there were things, new things, unknown things, things that represented weakness and hopelessness, things that were a reminder of death, things that held fear and dread in the life He lived, things He had to face in a fallen body.

For me, the Garden of Gethsemane, has become unfathomable, ineffable.  How could this be for me?  For one felled time and time and time again by misery that is a mere fraction of what Jesus chose to endure so that one day mine would end?

Lord, I believe. Help my unbelief!

Who will remember for me...

I realized that I forgot my baptism.  In doing so, I felt as if I had been punched in the stomach, much as I did reading the article about the warning signs of Alzheimer's.  My baptism.  Just the third anniversary.  How...how could it be that I forgot the day?

I mean, for the past few weeks, really back into June, I was anticipating the date.  The external that I could point to, cling to, hold on to like a mast while a storm rages all around, tossing my small craft to and fro, swamping the deck with relentless waves threatening to sweep me overboard.  Two weeks ago, I even got out the candle that I have forgotten to light the past two years and set it on top of the cabinet where I keep it.  This year, I was going to remember the candle.

I forgot the day.
I forgot the candle.
I forgot the baptism.

How could I forget the latter?  Because I struggle...often...with remembering that I am absolutely, fully, daily forgiven.  Sometimes, I think the dyautonomia is my foe's most effective weapon against me.  I mean, when you are most miserable with the stomach flu, when you entire body is aching and nausea rules your every waking moment, when vomiting only heightens the agony rather than provides relief because you continue to do so even when nothing remains in your stomach, when diarrhea makes the misery seem utterly unbearable...even then there is an end.  In a few hours, in a few days...there will be and end.  There is no end for me, until I die or until a miracle occurs.

Just when I think that I can bear it, I cannot.  Just when I think that I will not be felled again, I am.

I know that with the migraines...at least now I know...there will be an end.  I take the pills, turn off the lights and any sound, hold Amos against me, and wait until I can take the second dose.  I have this card I created to help me remember that the agony, the misery, will end.  It tells me that each and every time I think the medication will not work because it seems to take much longer than it should to start working.  Pain slows down time.  Pain magnifies every fear.  Pain obscures the light.  Pain twists the truth.

External.  I have come to believe that there are no words sufficient enough to fully explain just how crucial the external is...for me, at least.  The external word.  Words outside my pain and fear and confusion and doubts.  Words outside my own senses, outside my own mind. The Living Word.  His body and blood given to me.  The holy Scriptures spoken to me.  Water poured over me.  But also the words in the book The Courage to Heal.  Also the words from friends.  Also the words from brothers and sisters in Christ.  And also the words written on a card.

A card that I can hold. A card that I can read.  A card with words that tell me I cannot trust the pain, I cannot trust the misery, I cannot trust the despair.  The migraine will end.  There is a plan.  The plan works for me.

Isn't that what remembering your baptism is?  It is a wrinkled napkin you can see was once wet.  It is a piece of paper you can hold documenting what took place.  It is a candle you can burn reminding you that there is a Light that breaks through all darkness.  It is the external that gives you certitude that renders moots the darkness, the despair, the doubt, and the confusion.  It is the external that heralds your absolutely, complete, daily forgiveness.

Oh how I long for July 19th not to be just another day.  When I do not, when I cannot, who will remember my baptism for me?


Lord, I believe.  Help my unbelief!

Who I am is gone...

I read an article on 10 warning signs of Alzheimer's for family members to watch for in their loved ones. The cognitive dysfunction I have matches 9 of them. As much as I have blogged about the changes in my brain, I was still stunned. So, I did it. I ripped off the proverbial band-aid. Gone are the last of the educational research articles and such and all of my lesson plans from elementary, junior high, and college. I will never teach again, nor will I be able to study the way I thought might could keep me occupied in my dotage. 

I kept a single box of teaching aids that would be useful still (flashcards, literacy aids, and such) in case I can find a home for them better than the trash/recycling can. I kept a handful of student work that made me smile, such as a letter to Wendy from Peter Pan than included her shadow. And I kept some fairly cool vintage photos from NASA that some space geek would be thrilled to have. 

Two shelves were emptied, and the trash bins and recycle bins are rather full. I still have examples of my communications, knowledge management, and strategic planning work in case someone or some non-profit would like my help while I can still give it. I kept samples of all my published work. I kept the data from my dissertation work and from the multi-year mother/daughter book club in case the Lord sent someone to help me write about work that is still fairly ground-breaking.

But who I was is gone. What I could do is gone. And there is no use hanging on to things that either I no longer remember or could ever understand again.

I am Yours, Lord.  Save me!

What is hope...

"You will never be completely free of pain."  What comfort I those words to be!  So often, of late, I hear folk tell me that they do not know what to say.  Here, I have written many a time that all they have to do is speak the sweet, sweet Gospel.  Read me a psalm or two or twelve.  That is, of course, a salutary idea.  Only, now I would like to add another option:  "That's crappy."  or any derivation thereof would me music to my ears, my heart, my soul.  Because what is happening to my body is crappy...and all derivations thereof.

At the doctor today--a final visit since insurance is ending--I was very specific with the words I used.  I told her that I had a plan for the wretched migraines.  I had a plan, of sorts, for the freezing cold spells.  But I did not have a plan for my innards...other than trying to survive the agony without falling into lasting despair.

After hours and days and weeks of online reading, I have become quite educated on what exactly happens when dysautonomia interrupts your digestive processes.  The two things most troublesome for me are gastroparesis and small bowel bacterial overgrowth (SBBO).  The former is about food not emptying from my stomach in a timely manner; the latter is about the same.  These explain the writhing, bloating, foam, gas, difficulty breathing, and diarrhea.  In a word, the problem I have is motility.  But because this is a neurological problem, not a digestive system one, motility medications most often just make things worse.  For me, much, much, much worse.

I had given up a while ago.  I had given up any hope on this part getting better.  There seems to be no rhyme or reason with what I eat, when I eat, how I eat.  Of course, I absolutely need to stick to the small meals--something I had gotten away from with all the tasty cooking the seminary bride staying in the basement living space was setting before me.  But even small meals do not always help.  They, too, can add up and get stuck in bits where they should be moving along.

I read, however, that a common treatment for SBBO with dysautonomia patients was a 7-day course of erythomycin when things are really bad.  It knocks back the build up of bacteria that happens when food hangs around too long in the small intestine.  This is why the two times I have had antibiotics in the past year I have had better digestion times...less nights of writhing for hours on the bathroom floor.

"You will never be completely free of pain," my doctor said when I talked about needing help with a better plan.  "But we can keep trying to have less pain, to bring your pain to a more manageable level.  Perhaps where you can sleep even though you are aware of it."

Much to my surprise, my doctor, who holds a stance of antibiotics as a last resort, is quite open to using the most common motility drug treatment in this specific sort of SBBO, only she is not all that supportive of the zap-it-once in a while theory.  She believe motility treatment is better in small doses of erythromycin daily in suspension.  So, I will start that medication, worried about the additional money every month, but hopeful that things could be better.

Even a little bit.
Even if just for a while.

I do not hope for a miracle.  I do hope for more grace in the suffering.  And I hope for less suffering.  If not whole nights without out, long, lovely stretches of that, perhaps whole nights where I am only aware of the pain and not drowning in the despair it brings.


I am Yours, Lord.  Save me!

The beginning of the end...

That what it feels like to me.

I had several goals for the month of July.  One of which was to find a bank where I could have a checking account that was free.  My first attempt was a bit of a bait and switch sort of experience.  Bettina's husband chimed in on the matter and suggested that I chose a local bank.  After researching local banks, I settled on one that had free checking, free online bill pay, and a $2 reimbursement for any ATM that charged a fee.  Part of my reluctance, though, for closing the account is that I have had it for 13 years.  Only when Wells Fargo bought out Wachovia, they targeted my free checking account for transition to a $15 per month checking account.

When I went into the bank and said that I wanted to open an account, the teller hollered over to a financial manager that she had another college grad needing to open an account.  I am tired of being treated like a young woman...honey, sweetie, little lady.  I am 45. I am middle aged.  For me, I am probably old age.  As irritated as I felt, when I sat down with the manager, I specifically asked for no product sells, just a plain Jane account.  He was kind, courteous, and took care of the matter.  So, I got to check that goal off my list (pun intended).

But the hardest goal for the month was to apply for disability.  I do not wish to do this.  For me...to me...it makes me feel as if my life is over, as if I have nothing to contribute, as if I am nothing.  Only the truth is that I need to take this step.

The SSA case worker with whom I met was kind and compassionate and extraordinarily patient.  Utterly patient.  I did find it interesting that she noted my parent names are not correct on my social security card information, so she corrected them and reissued the card.  It will be coming soon.  A first step.

After working through everything but the disability report, she gave me a week to finish it online.  I had started it, but each time I set down to work on it, I become overwhelmed.  Very.  And afraid.  Of what, I cannot quite pinpoint.  However, the medical history part is quite involved and had to do with the things I cannot remember, the years that is.  So, it was not finished by our meeting and I have grave doubts about finishing it by next week.  Only it must be in order to complete the application.

I wonder all the time about disability. I wonder what is means, truly means, to be disabled.  I wonder if, as some have accused, I just try harder I will be better.  I wonder what life will be like, dependent on government programs that are running out of funds.  Once I qualify, I wonder what it will be like on medicare.  I wonder how much more I shall have to fight for help with a disease no one local seems to understand.  I wonder what the days will be like even though they would be no different than those I am living now.  Less worrisome, financially, at least as long as social security remains solvent.  But I wonder what I will be like...I wonder who I will be then.

There is no more hiding from the fact that stress is a trigger for my migraines.  I had a spate of them around the anniversary of the pit bull attack.  And I had a terrible one yesterday.

The stress of today.
The strain of today.
The shame of today.


I am Yours, Lord.  Save me!

Odds and ends...

All this organizing...make-shift and not...has had the effect of bringing together odds and ends.  Just when I think that I have those bits and pieces matched up, I find another stray.  For me, there is an odd sort of joy to putting my latest discovery in its proper place.  Of course, there is also the chagrin.  Should I mention how many pairs of scissors I still have?  SIGH.

The two drawers in the kitchen that are, for all intents and purposes, utility drawers are now rather impressively organized.  I put a small bin in the one beneath the microwave to hold the scissors, screwdrivers, and paint can opener that I keep in there.  Amazing what a difference a small holder can make.  I call this my tool drawer, since it also has the tack hammer I use to tap down the stray nails in the old wood floors and the three prong converter for the two prong plugs.  And it is where is I keep my toothpicks and matches.  I also put an old leatherette cardboard box in the top cabinet drawer where I keep a pad of paper, writing implements, a measuring tape, a flashlight, and my new (and beloved) utility knife.  I put the pens, pencils, highlighter, and sharpies in the box.  Again, a big difference!

For a while now, I had been collecting all the scissors in the tool drawer.  I decided to keep one pair there, one pair in the other drawer, and one pair in my bathroom.  The rest are now with the office supplies in the basement...however I ought to put at least six of them in my latest donation box.

Another change I made was in the drawer in the antique wall table that holds my antique typewriter in my room.  It is actually a card table, with a top that opens up and rotates to change it from a wall table.  In the drawer, for two decades now, has sat the linen paper I had for job searches and some parchment paper.  You know, back in the days when resumes were printed on fine linen paper and mailed in equally fine linen envelopes.  I do not know why it has sat in there for so long, other than perhaps it was a way to keep it safe. [I had also kept the wire mesh teddy bear tray with odds and ends that I donated last year.]

Being an ex-communications manager, I have a few other partial reams of special paper, though none nearly as fine as this stock.  All of those are in a box in the basement.  So, now, the linen stock is there, too.  One box of all the special stock paper I own, from glossy brochure paper to velum to the linen paper.  From a paper standpoint, my house is now completely organized.

I would use the linen paper for letters.  Only, I am not all that good at shouting at the wind in letters anymore.  Long ago, I was an avid, profuse letter writer.  I enjoy writing them and savor receiving them.  For me, the written word is far, far more effective in speaking the words of my heart.  Only I do not really know anyone, anymore, who savors the same.  Although I send letters, I rarely get responses.  So, now, I seldom send letters (though I am still an avid thank-you note writer). For that reason alone, I sort of feel like I should donate the good stock I have, the linen stock and all the decorated paper stock.  Only...I will find myself thinking that if I did find some letter writers, then I would want the paper.  Hence, the box.

One gathering of odds and ends that I am thankful for are the ID cards from schools I have attended and jobs that I have held.  I knew I had them in this drawer or that one, but going through everything again, for the zillionth time, now that I have places for such, I was able to put these few with those two and so on and so forth.  I am still missing a few that I thought I had, but although I cannot remember a single day from any of the IDs, I have them.

I did have another revelation...again filled with chagrin:  I have enough lip balm to last me even if I live until 100.  I have enough unopened lip balm for every person who attends the Monday evening services with me.  I have enough lip balm.  More than enough.  How did that happen?

Perhaps the best find of the day...or rather re-find...was the button to my flowered pajamas!  I have found it many a time over the years, only to lose it again.  Feeling as if I should not tempt fate another moment, I took the time to sew it on forthwith.  

Sometimes I wonder if I have crossed a line with all my organizing, reducing, and recycling, but deep down inside I think that this is not driven so much by the need to work through the upsettedness with which I struggle, as it is the reality of the cognitive function I am losing.  I need, truly need, for everything to have a place and for everything to be in its place.  I also need for others in my life to know where things are.  I am not sure when it will be that I can get my best friend to come, but when she does, my goal is a tour of drawers and such so that she will know where things are.  She finds me when I am lost whilst out driving.  The days are coming when I will need her help finding the things about my house as well.  That is why, for example, my blood sugar meter is in the basket on the kitchen counter, a place where Bettina and several others know.  That is also why the trust papers and power of attorney paperwork is in the deacon's bench...an easy place for those who know (which is now all my blog readers) to find in case of an emergency.

I suppose...the more I am fading away, the more I organize, the more I re-visit the drawers and closets and boxes and shelves and such to ensure that there is not still more room for improvement, more room for organizing and grouping things in a way that makes the most possible sense.

And the more I organize the more I re-evalutate just what are the things that I need, what I merely want, and what I can now do without so that others less fortunate might find them of better use than lying about my house.


I am Yours, Lord.  Save me!

Whys and wherefores...

I have been organizing, reducing, and recycling again. Given how organized my house is, what I have been doing is almost make-work. Almost.

I have been going through drawers and such.  There are whole drawers that have been moved intact for over two decades now.  The antique secretary is a good example of this.  [That is one of my stashes of office supplies.]  Though I have not bought any office supplies in, I believe, over three years now and have given away eight banker's boxes of supplies, I still have an embarrassing amount of supplies.  The secretary is a place I have sort of avoided for what is in there.  I have reduced from there several times, most recently last fall.  Still, there is much room for improvement.  And, well, I could supply pens to an entire grade at a school, if not the school, despite how many I have given away.  I just found another stash of fairly good ones.

Tonight, I pulled out all the checks from the account I will be closing on Monday. I have had it 13 years, so that saddens me.  But Wells Fargo, the bank that bought out Wachovia, has changed it to a fee account.  I have no room in my non-existent budget for bank fees.  I tried to find a free account on my own, and got hood-winked by PNC.  Bettina's husband wisely admonished me that I should have tried a local bank.  He is wise; I found one and set up my free account.  All that is left is to close this account...and burn all the checks and deposits slips I have.  

I also grouped all the envelopes of various sizes into one drawer and the notepads and index cards into another drawer.  While all my paper is now boxed in the basement storage shelves, I left the colored construction paper in one of the drawers.  I figured that that is really an art project sort of stash and would only need it if I find a school child who wants it or if someone with children comes to visit me and they want to muck about with it.  I also have in the top drawer of the secretary all my stamps.  It is a varied collection since I used to have students write stories with them.

Some of the supplies are from my grandfather's desk and from my father's.  Two examples of this stash are old flag pins for wall maps from my grandfather's civil engineering work and these funky paper marks that my father used in his books.  They are green, translucent plastic with a metal bit underneath the plastic at the top.  They slip on an edge of a page with one side of the clip slightly longer than the other.

The secretary used to be so crammed with supplies I would have been rather horrified if anyone dared open a drawer.  Now, it is more of a resource than a hoard.  I could, though, rather easily, give it all away and never find myself in need of any of the contents, save for the nine different types of envelopes that are in there.

The seminary wife who was staying here mentioned to me one day that she has a memory box.  It is a large box to which she adds stuff each year.  As she does so, she re-evaluates what is in it to weed out the things that she did not really and truly need to keep.  While she was talking about this, I thought about little things I have kept despite my wholesale ditching of things.  I mean, my multi-layered wholesale ditching.  After all, it took several rounds of reducing for me to let go of some things I have been carting around since I was a teenager for no other reason than that I had them still.

Yet I have somethings that no one else would keep but me.  Things that are from my life, even though I can no longer remember either the days they represent or the whys and wherefores of them:  a decorated ping pong ball from summer camp; a lanyard from welcome week at college; my first name badge; mints from El Fenix; a prism; the badge from my first bike race; Kashi's foot print; a "witnessing" bracelet; my PDAP knot...the list goes on and on.  When she was talking, I thought about this antique box I have that is a replica of a ceder trunk.  The company must have made them for little girls to play with since they are miniatures of the ceder chests women would keep for dowries and such.  I finally found a use for the box I have kept since I found it at a flea market in college.  If you came to visit, I could pull it out and show you all the little bits and pieces of my life I have inside of it, even if I cannot tell you about them.

I think, perhaps, I could now say that the STUFF I have, since I started this process two years ago next month, has been reduced by at least two-thirds, if not more. I still have STUFF. I have things no one but me really cares about, such as a jar filled with buttons from my grandmother and now from my life as an adult. I have things that are useful but could take me at least a couple of decades or so to use up if I keep them all to myself, such as the lingering office supplies.  I have things that I could give away now, but would make fair gifts, especially since I wonder if I will ever be in a position to buy gifts again. I have things that I want to sell, but do not know how to do so without getting at least a decent fraction of what they are worth (a few coins, antique jewelry, and the silver service set). And I have things I think could sell but have absolutely no clue if they are actually worth something, such as a 1912 copy of Schirmer's The Messiah: an oratorio for four-part chorus of mixed voices, soprano, alto, tenor, and bass soli, and piano.

The past two weeks, fear and worry have been clinging to me, filling me, obscuring the good things in my life.  I cannot fathom life past July 31st.  I cannot fathom trying to pay for my medications.  And I cannot fathom enduring the battle I know trying to get disability will be.

So, I have been looking about for something else to organize, to reduce, to recycle.  I still have a few drawers that while look fairly impressive, still have room for improvement.  I still have STUFF in the basement that truly could be lessened.  And there is the luggage in the attic I need find someone to help me decide which set to keep and which to donate or sell.

I shall probably turn my attention to the basement storage now that the seminary couple has gone.  The utility closet.  The storage shelves. Surely that would be enough to keep my mind otherwise occupied for a short while.

Of course, I could finally sand and touch-up paint all the window frames where I pulled down the atrocious, miss-matching, over-sized curtains from all the windows with painted woodwork.  It is not the painting, but the light sanding of the holes and indentations from the rod hardware.  Doing so will make a mess...beneath each window, on each side of each window.  It is not even the mess.  It is the work of cleaning up the mess on top of the work of the sanding and the touch-up painting.  The thought of that is exhausting.  However, well, the sight of those holes sure is bothersome.

I am Yours, Lord.  Save me!

Fluffified...

I gave Amos a bath today.  A bath, nail trim, de-tangling session, and ear de-hairing.  He was very, very, very happy when I was finished.  He prefers that those things do not happen on the same day.  However, I had been a bit remiss in my care of him.  The fatigue of late has been more troublesome than normal.  Sometimes, the thought of doing anything is more than I can take.

So, I had an evening of holding a swaddled, sweet-smelling, soft, fluffified puppy dog.  Yes, the ex-literacy professor is twisting a word into a no-word.  Fluffified: the past tense of fluffify, which means to make fluffy.  I know that there is nothing in the world softer than a baby's skin, but I am thinking that Amos freshly bathed would make a very strong showing in a softness competition.

Oh, my, when I am working on him, Amos is simply the most pitiful creature on the planet.  In fact, tonight I took breaks because Amos was trembling so very violently.  I could feel the rapid thud of his heart against my leg, my stomach, my arm, my body.  He needed the care I was giving him, but I was worried at how upset he was.  The rest of the evening, Amos lay in my arms, a lump of exhausted puppy dog.


I have been thinking that it is amazing to me that after all that puppy horror, Amos still finds his surest refuge in his puppy momma's arms.  He still follows me wherever I go, preferring most to be at my side...even if I am merely washing dishes.  When his guilt over an indiscretion fills him, Amos will sit or stand a bit off, but he longs to be with me even then, returning as soon as he feels it is safe.  


My friend Celia, during her brief visit, mentioned my loving Amos.  Love is a word that I have found most particularly difficult of late.  It bothers me, deeply, how people toss it about...even Christians.  I have had people say it to me, but I do not believe them.  Primarily, because to me love is not words, but actions.  Love is not something that you say, but what you do.  I struggle with using the word love with Amos because he is a puppy, not a person.  Although...to be honest...I do tell Amos that I love him.


And I feel stupid and foolish and silly for doing so.


I think about the pit bull attack, about the words I heard then.  The men trying to help me kept urging me to let go of Amos, to give the pit bull what he wanted.  But I couldn't.  Not just because that would be cruel.  I could not because Amos already meant too much to me.  Already I couldn't imagine life without him.


And that was a year ago.  Not yet had I experienced the devotion that is Amos.  Not yet had I experienced the vulnerability that is Amos.  

There is a fellowship in suffering.  It struck me tonight how there is one creature on the planet who understands my physical and mental and emotional battles from the pit bull attack, even though we do not share them.  His are different from mine.  And yet we suffered together.

Thinking of that made me wonder if perhaps something of that is behind James saying that we should consider it all joy when we encounter various trials. Not that we should want trial.  Not that we should desire suffering.  But in suffering lies a fellowship with Jesus that is not found outside of the cross.  There is joy with Jesus...always.

Well, in my mind, all muddled together, are thoughts of Amos and suffering and fellowship...and of love.  I have been thinking that perhaps the reason that Amos longs to be with me even when he is afraid of how I will respond to an improper location of his deposits because he knows that I love him.  And he trusts me because of love. So, because he trusts me, even though I do things that frighten him, his place of safety is in my arms.

He's just a puppy.  Not a person.  Can puppies know love or trust?  Can I?

When I am caught in a maelstrom of emotions, I will oft flee to a place where I can hide to help me feel safe. Again, with so much of my life of late, I need the external to help me do what I cannot, by my own strength and will do. The external I crave the most is the Psalter, is to have someone fill my ears with it.  Of course, any Living Word is a blessing, but the words of the Psalter are the words of my heart, they are the words of fellowship and love and trust.

Holding Amos tightly calms him.  His physical being changes in my arms. His mental and emotional being changes.  He is calmed, soothed.  He finds peace.  Does that mean that because the Psalter does the same for me, that is it as if God is holding me in His arms?


How in the world does one meander from fluffified to peace?  So muddled is my mind.  Only, well, Amos gets fluffified from being bathed, being washed clean in water.  


Water.
Baptism.
Faith.
Fear.
Love.
Trust.
Peace.


Lord, I believe.  Help my unbelief!

Puppy love...

I really like Amos' expression here.  It is as if he is saying, "Do you have a problem with my loving and guarding Baby Lady Bug?  Real dogs keep babies near them.  Get over it!"

Too long has passed since I posted on the magnificence of the gift of this persnickety, wicked little fluff ball.  What's the latest news?  My, does my puppy believe that he is a goat!


Amos, to date, has tried to commit suicide by grapes, Celebrex, Theophylline, Singular, Albuterol inhaler, dry highlighter, chocolate, bottle cap, toothpaste, toilet paper, battery, and lip balm.  Although not suicidal, Amos somehow noted the molded cherries in the trash bag that was waiting for me to carry it out to the bin tonight.  While I was changing the position of the hose, he chewed through the plastic bag and polished off about a cup of squishy, moldy cherries (and pits).  Lest you worry my beloved puppy dog is underfed, I would remind you that for the past seven weeks, Amos has had THREE sets of dishes to lick clean at every meal and a new aunt and uncle who have no problem sharing tasty bits...especially when Amos engages in his silent begging, that involves a close presence and very, very pathetic looks.


Aside from giving me regular panic attacks over the state of his impending demise, Amos has developed a new phobia: the sprinkler.  My shadow prefers to be at my side no matter where I am or what I am doing.  Even knowing the terror of the spraying water looms, if I try to leave him inside when I go out to set or move the sprinkler, he will whine or howl at the back door.  However, the moment he spots me heading toward the faucet in the back yard, Amos comes bounding over and demands that I pick him up.


Yes, you read that right: DEMANDS.


So much like a little toddler, Amos prefers to be carried, especially when he is overcome with fear.  On your shoulders is best, but in your arms will work.  Sometimes, he will not give you (or rather me) any choice in the matter.  The funniest manner in which he will let you know he wishes to be held is that he will leap up in the air to get you to try and catch him.  If you miss and you bend over to pick him up, he scampers out of reach, only to return to the wild, frenetic leaping in an attempt to gain your arms once more.

You can see that Amos has no problem making himself comfortable in the bed.  You can also see that he brings his babies with him.  Flower Baby primarily stays up in bed, because were she not here at night he would go all to pieces.  I try to limit him to a total of three babies, but right now, for example, there are eight of them in here with us. When I first get in bed and read, Amos will drape himself across my abdomen and snooze. Or he will perch on my hip if I am lying on my side.  But once the light goes out, Amos either curls up at my side, pressing his back firmly against me, or he curls himself up in my arm and rests his head upon my shoulder...eventually to send his snores directly to my ears.


I can live with all his babies because Amos has learned a fundamental Myrtle lesson:  Getting up out of bed and even eating breakfast does not mean one has awoken for the day.  Amos has become quite skilled at going back to sleep in the mornings.  In a small act of utter trust, he no longer follows me to the bathroom each time I get up or even downstairs to fetch the final dose of medication I have missed (were I to keep it upstairs I would still somehow miss a dose).  Most often, Amos will deign to lift an eyelid to check and make sure that I do not look as if I am ready to venture down for the "day."


He is such a comforting companion, so attentive and ever present, I am still astounded at this gift from my Good Shepherd.  His uncanny ability to follow long instructions and his willingness to sit and listen before going to do what I ask makes it like I have a room mate as well as a puppy.  His devotion to sharing every bit of my life...including all moments of misery...is humbling and a salve to some of the deepest wounds I bear.  His wicked, sneaky attempts at gaining contraband are a constant source of laughter for me.  For example, if he wants something, he will inch closer and closer to his target, all the while feigning disinterest and acting as if he he merely stretching, finding a more comfortable position, or coming to keep you company.  With the seminary husband currently staying here, Amos has become an expert in stealth when it comes to stealing his napkin.  However, Amos' tendency to celebrate his victories right in front of you sort of negates his impressive stealthiness.  Still, you have to smile at him.

Amos is part accordion, apparently.  He can stretch himself far longer than he actually is, if properly motivated.  Things on the edges of counters and tables...tasty things that is...or paper things...are no longer safe from him.  Recently, Amos, while visiting at his aunt Leslie's house, figured out that he could get himself from the floor to the top of the table in a single leap.  Hopefully, I have disabused him of the notion that leaping to the table top might garner him more food.

With his hard won free access to the main stair case and the dining room, it is now hard to trap him if he wants to play catch-me-if-you-can.  It cracks me up that he prefers to go up the main staircase but down the servant's stairs.  He also approaches them differently.  He bounds up the servant's stairs two paws together.  However, he scrambles up the main stairs one paw at a time, looking strangely reminiscent of a rock climber.


Although he sometimes still has a fluid understanding of the proper disposition of his solid bodily waste, Amos could not be a more perfect puppy for me.  The love and affection have done wonders for me.  This ability to learn quickly helps when others are willing to teach him something.We practically hold conversations. I am adored as much as a person could want.  He is the ultimate snuggler. And I am never alone.


Only the One who knows the desires of my heart and every wound on my body would have provided me exactly the puppy that I needed so that not a single day goes by--no matter how miserable I may be otherwise--I am effused with puppy joy for at least a moment or two...if not hours on end.


Lord, I believe. Help my unbelief!

The challenge of privilege...

I oft think of Corrie Ten Boom's story of her sister Betsy giving thanks for the fleas in the barracks of the concentration camp where they were being held.  The fleas, you see, kept out the guards.  With the guards outside, they were able to speak of, share, and practice their faith.  When it comes to the idea of perspective, I am fairly sure that her story is the single, most profound object lesson of all time.  I mean, who would ever, ever, ever think of being thankful for fleas.

Eons ago, back when I was in high school, I baby sat at a house that was infested with fleas.  Completely.  Utterly.  There I was, sitting on the couch reading to my young charge and a bit of movement caught my eye.  When I realized it was a flea, I smashed it as quickly as possible.  I had not a single moment of relief for another and then another hopped on the book, on the couch, on our bodies. In mere seconds, I realized trying to kill them all was a futile endeavor.  Being acutely sensitive to insect bites, in short order I was miserable.  It took all my resolve to not flee the house and leave the child behind.  Strange thing was, his parents didn't seem to notice when they got home, even though my exposed skin was riddled with bites. I was weeks recovering from all the bites I suffered.

So, the idea of being thankful for fleas is literally unfathomable for me.  And yet she was.  Perspective.

Betsy counted the opportunity to serve others a privilege.  Only her privilege was wrapped in an near unimaginable cross.  I have been thinking of late that the heart of true privilege might always be so wrapped, in some fashion or another.

Lately, I have spent time with someone battling obsessive compulsive disorder as a part of her struggle with Asperger's.  Doing so has been difficult at times.  In order to be around her, I have to change my own habits, disregard my own preferences.  Sometimes, this is rather easy to do.  Sometimes, honestly, it is not.  I suppose you could say the old Adam moves strongly within me and I long to just set down the burden of being vigilant to guard against her triggers.  They make no sense. Why must my phone and iPod always be turned faced down?  Why can I not say the word "shark"?  Why must the microwave timer never reach zero?  These things are harmless.  Why all the fuss? I sometimes long to retort. Only they are not...to her.  They harm her...her mind, her body, her spirit.

What I admire about her is that she is so direct.  She is bold to speak her needs.  She is quick to protect herself. Being with her has been a blessing.  And it has been a privilege.

Because of the memory loss and cognitive dysfunction I face, I have far, far more patterns in my life now than even a year ago.  When I walk in the door, I immediately hang my keys on the coat rack. If I do not, I can spends hours...even days...looking for them.  I now hold my bills in my hand until I have set them up on bill pay.  If I set them down between mailbox and computer, even if it is right next to the computer, I will forget about them. I have alarms set on both my phone and my iPod telling me things to do all day.  So much of my life is instructions, routines, or alarms.  I need for people to not only help me in the remembering department, but I also need for people to not interrupt the coping mechanisms I utilize, whether or not they make sense to them.  More so, I really need for them to understand.  I need to not be alone in the battles I face. It is rather exhausting keeping track of the things in your life that most people get to ignore.

That's where she excels.  This young woman is quite skilled at communicating the whys and wherefores of her needs.  Confidently.  Matter-of-factly.  Without shame.  Would that it were I had her strength, her courage, her peace.

Living with her has been lesson upon lesson, blessing upon blessing...with the right perspective.  It is hard for me to remember things.  When I am exhausted or when my blood sugar is low, I am less capable of remembering, less capable of being rational even.  I have struggled so much with the past and remaining in the present.  I truly do not need more work in my life.  Yet that work has been a privilege.

Perspective is most certainly a good gift from our Creator, our Redeemer, our Sanctifier.

I am Yours, Lord.  Save me!

Why does it matter...

Lying on the bathroom floor, many thoughts go through my head.  Most of them are rather dismal and laced with some degree of self-pity.  Mostly, I just try and endure.  Only doing so is difficult when some sort of war is going on between your innards and the rest of your body. A violent war.  A raging war.  Physical war breeds mental and emotional war thoughts.  SIGH.  Only some of those thoughts just make me wander about in mental circles hours later, when the war is over.

One has to do with the painting and such I have done about the house.  The person helping me all last year said that I was creating visual rest, something that is often helpful for people facing crisis, trials and illness.  In a way, I understand that.  Somewhere along the way, I seem to have lost my tolerance for a messy home about me.  The last thing I do before heading upstairs is to pick up the living room and put away any dishes that were left in the drainer.  The last thing I do before heading downstairs in the morning, mostly, is make my bed.  That way, I awake to a space neat and straight and head up to a bedroom that is the same.  Mess wearies me.  

But white walls is not mess.  So, why does it soothe me so much to finally have them painted?

To paint or strip-and-then-paint has been my dilema for eons...or at least since last a year ago March.  The servant's stairwell and the upper hallway were white.  White walls.  White trim.  All the same paint, too, rather than a gloss on the wood trim.  I found it to be ugly and barren.  

When I ordered the paint for the house, I had not purchased paint in about 10 years.  So, I honestly did not know how expensive it has become.  I did not think at all.  Stupid, I know.  That way, I ended up at the register in Lowe's in utter shock, staring at the read out on the register that flashed a total over $600.  SIX HUNDRED DOLLARS FOR PAINT!

SIGH.

So, when it came to this last section of my house, all I could think about was the cost of those two gallons and would it be wasting them to paint over the wall paper that is rather poorly applied.  Of course, the thought of scraping all the wall paper off was daunting, even though the parlor job was not nearly as bad as I thought it would be.  The prime stopping factor was that the ceiling is papered as well.  With it being lathe and plaster, I keep worrying about the ceiling coming loose.  I mean, who wallpapers a ceiling?  The parlor had three layers of paper and two of paint beneath the final layer of grey paint.  What in the world would I find?  And how could I possibly keep the carpet clean?  

Most of what I have done of late has been in direct response to some stressor...financial blows, medical blows, memory blows.  Surely, the hallway and stairwell are painted because I wanted closure.  I cannot seem to find it with the pit bull attack, but I sure could find it with the painting, using up those final two gallons of paint, covering those final bits of bothersome walls.  I decided that the possible wasting of paint was far, far, far less than the visual rest I would find with the white covered. Of course, it was not just that they would be painted, but that they would match all the rest of the house to which they are connected...the foyer, main staircase, and parlor.

I switched out the sink in the bathroom, because the original sink was just 26 inches high.  Bending over it was often excruciating with the arthritis.  However, all the rest of the bathroom work was about covering the two garish shades of green, with making the space more peaceful to me.  Now, it is clean and simple and rather beautiful.  Why is it that writhing in a beautiful space is more bearable than writhing in an ugly one?  The pain, the battle, is the same.  Just thinking about it make me think that I am just plain crazy.

Another label the person gave was self care.  If making my home more beautiful to me makes me feel more peaceful, more balanced, then the labor and even the cost is worth it.  I am worth it.  That just sounds so...well, selfish...to me.

However, before I came here, I never realized how having space about me would be helpful.  I did not realize the main floor had high ceilings.  I did not realize, actually, just how large the space would seem to me.  To others, I suppose, my house might to average.  To me, it is positively palatial! 

But it is not merely the space. It is also the beauty of it.  I savor the rich wood.  I chuckle at the thought of my own stained glass window.  I relish the beveled glass, too.  And all the older-house touches tickle my fancy:  the laundry chute, the detail on the back of the fireplace, the servant's stairs/quarters/closet, the walk-up attic, the dining room built-in display case, the wide porch.  Now, the home is even more beautiful: the paint, the parlor-bath, the master bathroom, the laundry space, the living space in the basement, the improvements in the yard, and the incredible change my mother wrought on that porch all add up to a home that is a dream home to me. 

How many people ever get the chance to live in their dream home?

Dream home and dream puppy.  A puppy who curls himself against my head whenever I am writhing on the bathroom home.  Writhing in a simple, beautiful bathroom.  Why does this matter so much to me?

Should it?

To me, I wonder if this is just about control.  So much of my life...my own body, for goodness sake, is out of my control.  Only what am I really controlling?  I could see control being a factor in all the organizing and reducing and such, but in painting?  In gardening?

What does it mean to be content in all circumstances?  Ought I to have been content with a garishly painted bathroom?  Ought I to have been content without the planting, edging, and stepping stones in the yard?

I am convinced, without a single doubt, that this house is a gift from my Good Shepherd.  Bought without seeing it, I have really only had trouble with the repairs the seller essentially deceived me about.  It is nearly a quarter of my previous mortgage.  Current record temperatures aside, it is a home in a local that has weather not harmful to me.  And I am living next door to a woman who constantly amazes me, humbles me, in her efforts to teach me what a neighbor really is.  Inside, outside, in part, and as a whole, the house is an utter blessing to me...for me.

But should it matter so much to me?

Yesterday, I finally hemmed the curtains in my bedroom that my mother gave me in January.  I cannot sew, so I actually stitch witchery-ed them, after much fear and indecision about applying a hot iron to lace curtains.  The first one took nearly four hours just to cut and pin it.  I am so, so poor at measuring.  SIGH.  The second one took just over an hour to complete in full.  After much gnashing of teeth, I figured out that if I folded the curtain in quarters, I would be making a shorter cut and thus have a greater possibility of having a straight line.  After that, the four inch hem went fairly smoothly.  Every time I set eyes upon them now, I relax a bit.  Having curtains that were nearly three feet too long bothered me.

Why does it matter?

I am Yours, Lord.  Save me!