I need a plan...

First a photo, then a video call.  I was shocked seeing my father.  More shocking to me, however, was how difficult I found that to be.  Thursday night ended up being another miserable migraine, where in around midnight I was whimpering for rescue.  The drugs worked, along with ceasing all sensory input.  And Friday I did my post-migraine hibernating with no television, no watching things online, no music, no light, and a few check-ins on Facebook to see if the rest of the world was still continuing its journey about the sun.  Heavy, though, was my heart.  Fearful, too.

Seeing my father was a bit like looking into a mirror.  We both share cognitive decline.  We both share a struggle with independence.  We both share an inability to control emotions.  My father was caught in the rather vicious, to me, cycle of trying to regulate what's going on inside your compromised brain by physical and chemical restraints.  The difference between what I saw on the video call Thursday and what I saw on a video clip today was near night vs day.  The difference being two days without sedation.  Tomorrow, my father will be transitioned to what looks to be a rather supportive home for those with cognitive deficits, particularly those from dementia and Alzheimer's.  

Back in the dark ages, I served as a hospice volunteer.  I wonder, truly, what I would have written, had I kept a blog back then.  I know there were some pieces I wrote here and there, but they are lost.  I remembered very, very little of that time, save for the overwhelming sense of what a privilege and an honor it was to serve those in their final days and hours.  I remember this incredible day wherein I went to a Catholic High Mass funeral and rather elaborate, beautiful graveside service and then later stood beside a pauper's grave with a few others who noted a man's passing with their silent presence as his cardboard box was lowered in the ground.  No chairs.  No fancy green carpet covering the mound of raw earth.  No trappings to hide in any fashion the cruelty of death.

But, when I saw my father on Thursday evening, I was immediately transported back to the bedside of a baker who was dying.  I am sure I have written of him and his wife before.  Surely I must have.  Oh, how his bride scandalized me!  Being new to the Hospice program, I asked her what was most difficult about her husband's illness.  She very promptly and rather blithely replied not being able to have sex with him anymore.  Her groom spent his final days in a hospital bed in their living room.

Sex!  She was 80 if she was a day old. I was just 20.  Before her response, I was certain that couples ceased that sort of activity looooooooooooong before their age.  I stammered and stuttered and blushed profusely whilst she laughed at me.  But the sheer longing with which she gazed upon her lover ceased my blushes.  Such love.  Oh, such love!

Her groom was not aware of her presence.  Or mine.  He was no aware as I swabbed his cracked lips with glycerin and wiped down his arms, legs, face, and chest.  In fact, the baker continued to practice his craft when all else was taken from his mind.  I wonder now, what he was cooking.  If I asked, I do not remember what his bride answered.  All I remember is that they owned a bakery, not if they specialized in any particular bit of deliciousness.  At first glance, all you saw was an otherwise catatonic man flailing his arms about as he lay in bed.  Soon, though, through careful study, you noticed that his movements were careful and measured, deliberate and repetitive.

Seeing my father was like walking into that room for the first time. I was terrified for him.  And for me.  Off of the sedation medication, my father is more present and more mobile.  Hopefully, being in a place that specializes in the care he needs without resorting to just trying to control behavior without regard to the cost to the patient's well-being will mean my father is not as close to death as it appeared to me on Thursday.

Still, I wonder, even today, what passes through my father's mind.  He was groomed and walked.  Both of which are needful.  But, rather bluntly, both of which I do for Amos.  The comparison was not lost on me.  What I found ... beautiful ... was how my step-mother held my father's hand as he was walking.  Such love there.  Oh, such love!

Still, I am all sorts of discombobulated just now.  One small issue has been remedied, though.  A dear friend of mine has offered to help me get to Virginia to either visit my father or to go to his funeral.  This includes two days of traveling and a whole lot of assistance for me.  What mercy!  I am not sure I can make the trip, nor am I sure that it would be the best choice for me.

I hate that. I hate admitting it.  I hate even thinking the slightest bit about how much dysautonomia and multiple sclerosis have change me.  Primarily the former, since that is why I struggle so much with anxiety, why I am utterly incapable of successfully handling stress, and why such causes migraines that have increased in frequency and magnitude.

Today, though, was a good example of why traveling is so ... questionable.

Not only did the nightly innards misery start up around 11:00 a.m., instead of the wee hours of the morning, but also, even after eating to counteract low blood sugar, I had an even lower drop, an even deeper crash.  The sugar crashes themselves are not something I handle well, either physically or mentally.  In the past few months, the symptoms have now included both headaches and nausea, in addition to the shakes, clammy skin, and weakness.  The worst part, though, is the anxiety.  It is like throwing a match into a pool of gasoline.

I was so miserable.
And terrified.
And despairing.

I texted two friends, begging them to pray for me.  Bettina ended up calling me and reading me prayers from the Lutheran Book of Prayer.  Oh, how I needed to hear the things I was struggling to remember in my distress.  The external is so key in helping me on all fronts.

Given the agony in my mid-section, I simply could not eat anything else.  So, I resorted to the glucose tablets that rarely are much benefit.  I ate 8 of them, downed with some Gatorade, before I could feel the tide shift within me.

After praying with me, Bettina let me blather on for a bit, calming down with each word.  I found the strength to take Amos out, who had been making his need known.  And, to be blunt, while pacing back and forth waiting upon him, I had a great belch that eased the pressure and the pain in my mid-section to a more mentally manageable level.  That tide, too, was on it way back out to sea.

I honestly need a plan, a very specific plan, for such times when I am embattled on more than one front.  I can face the sugar crash, rather gracelessly, but face it nonetheless.  I can face the innards misery, the writhing, with equal weakness.  What I fail miserably to do, however, is face them both without being rescued from the fear and the despair.  But what if no one is reachable in those moments?  I need a plan.

I need a plan to remember that I am baptized, forgiven, washed clean, despite the sinful, doubtful manner in which I face the challenges before me.  I need a plan to remember that this misery is not at all what God intended for His creation.  I need a plan to remember that this life is not what He intended when God formed me, wonderfully and fearfully, in my mother's womb.

I need a plan to navigate the pain, the thoughts, and the emotions.

I need a plan to remember what Inara tells Petaline, who is struggling with the pain of labor, in Firefly's "Heart of Gold" episode:  "This is just a moment in time.  Step aside and let it pass."

This ... Thursday's video call ... was just a moment in time.  I need to step aside and let it pass.
This ... my father's illness ... is just a moment in time. I need to learn to step aside and let it pass.
This ... the duel battle today ... was just a moment in time.  I needed to step aside and let it pass.
This ... the whole of my illnesses ... is just a moment in time.  I need to learn to step aside and let it pass.

What have I accomplished since Thursday night?  I fed Amos.  I tended his needs.  I fed myself.  I tended my needs.  I fell apart ... many times.  SIGH.

I want my life to be so much more than that.  I want to be able to live only that with more grace, resting in the peace that passes all understanding, knowing that my life, such as it is, matters to our Triune God.

Christ did not die on the cross for me because I served as a missionary.
Christ did not die on the cross for me because I taught elementary school, junior high, and college.
Christ did not die on the cross for me because I advocated for foster care and affordable housing.
And Christ did not die for me because of the volunteer work I have done and might still do.
Christ died for all of my life because all of my life is precious to Him.

All of it.
Even now.
Perhaps ... especially now.


Lord, I believe.  Help my unbelief!