Operation Burnout

This has definitely been a rough week--emotionally, spiritually, mentally.  I have cried more this week, for apparently little to no reason, more than I have in the past year, and a lot of the tears have been angry, selfish tears. Tears shed in self-pity, in the "why me?" mindset.  I am so overwhelmed with the duties and responsibilities and the realities of being caregiver, guardian, trustee, representative payee, and sister of a mentally disabled adult sibling.  And, at the same time, I feel guilty for feeling overwhelmed, for feeling resentful.  And I just sit and cry, and get angry at the dumbest things, and cry some more, and feel sad.  My sleep is sporadic and not restful, I have given up exercising, and nothing I read or listen to gives me comfort, or answers to my questions.  And yeah, I read my Bible, I pray, I listen to music, try to take time for myself, count my blessings, all that stuff.  But, at the end of the day, I am still lost, overwhelmed.  I am in a black hole, with no end in sight. And I feel like I have lost who I used to be.  

Since over two years ago, right before my parents died, my life has been completely devoted to the care of my brother.  We oversee his hygiene, his choice of clothing, and how much he eats.  We shop for him, cook for him, clean up after him, and drive him everywhere.  I conducted hours of exhaustive research to locate resources for his special needs, to get him qualified for benefits in his new home state, find him a doctor, and ensure his Social Security benefits are channeled into the correct account. We supervise daily meds, and  repeat incessantly the mantras of wash your hands, brush your teeth, wipe your face, clean your razor, take a shower, chew your food, look out where you are walking, wash your hands, buckle your seat belt, look out for the car door so many times I feel like I say nothing else. When he is acting out, or throwing things around upstairs, cussing out some inanimate object, I stop and (try to) calmly intervene and figure out how to distract him and refocus him on something less frustrating.  I have to literally be a mind reader and a behavioral psychologist to ascertain if he is sick, because he is incapable of either discerning if he is sick or communicating true discomfort.  Conversely, we have had to learn that when he complains about being cold, tired, sad, or has a stomachache, that really he is upset about some microcosmic, miniscule change in his routine.  We have had to clean up overflowing toilets (and the messes he made when he tried to "help"), plastic spatulas burnt to the dishwasher coils, projectile vomit that happens without any warning (in a moving vehicle), and countless other disgusting and unsanitary incidents.  My husband cleans his ears three times a week to prevent earwax impaction--because, if he doesn't, the alternative is a one hour appointment with the doctor to flush out more wax than I thought was possible to form in a human ear in the space of six months.  Monthly pedicures and manicures are paramount, as is prophylaxis for fungal infections.  And those are merely the physical needs; behavioral, social, and spiritual needs are far more comprehensive.

Don't misunderstand...I love my brother; we volunteered to take on this thankless job, knowing it would be hard, knowing that resources are scarce, fully aware it would be a very steep learning curve.  Steep learning curve for me, that is...my brother will never learn more, or progress to the next stage in life...and that, my friend, is the rub.  Day in, day out, nothing really changes, nothing ever will.  Psychological evaluations from the past 60 years are eerily similar, talking about the same challenges, pointing out identical behaviors and challenges, regardless of whether he was 10 or 25 or 55.  Folks who don't deal with developmentally delayed adults tell me, "oh, it's like a perpetual toddler, or like my 8 year old." No. It is not. First, he is not my son...he is my brother.  Second, it is not that simple. In some ways, he is highly functioning and capable, like a 10 year old, but in others, he is almost infantile.  And in still other areas, there is no explanation. He is, was, and always will be, forever a kind of child.  A man-child. A very special person. Who will never grow up. Or be on his own. He will never drive, or get married, or have a regular job.  But when I look at him, I still sometimes see an adult.  He can do some basic things...with supervision. He can read, he loves music, and he is an awesome bowler.   But the fact that he is physically an adult lures me at times into the trap of false expectations, and, when he does not meet these expectations, as he will always, inevitably, not meet them, I am temporarily stunned, shocked, disappointed, and irritated.  Immediately followed by an overwhelming sense of remorse and guilt.  And I get angry and cry and then cry because I am crying and get angry because I am crying. And when folks who interact with him occasionally say how sweet he is, how fun he is, what a joy he is, I wonder if perhaps I am wrong. 

Yes, there are people who have it harder, who have challenges that make ours look like a cake walk.  But I am not in their shoes.  I am in mine.  And I have been completely and utterly human this week, and have succumbed to my human weaknesses.  This week, it has, for me at least, been too hard, too beyond my capability to manage, to understand, to fix, to deal with.  I am too tired to even apologize for feeling sorry for myself.  Judge me if you will.  Rant over.  

A time for everything

For everything there is a season, and a time for every matter under heaven:

2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.

The God-Given Task

9 What gain has the worker from his toil? 10 I have seen the business that God has given to the children of man to be busy with. 11 He has made everything beautiful in its time. Also, he has put eternity into man's heart, yet so that he cannot find out what God has done from the beginning to the end. 12 I perceived that there is nothing better for them than to be joyful and to do good as long as they live;13 also that everyone should eat and drink and take pleasure in all his toil—this is God's gift to man.

14 I perceived that whatever God does endures forever; nothing can be added to it, nor anything taken from it. God has done it, so that people fear before him. 15 That which is, already has been; that which is to be, already has been; and God seeks what has been driven away.[a]

From Dust to Dust

16 Moreover, I saw under the sun that in the place of justice, even there was wickedness, and in the place of righteousness, even there was wickedness. 17 I said in my heart, God will judge the righteous and the wicked, for there is a time for every matter and for every work. 18 I said in my heart with regard to the children of man that God is testing them that they may see that they themselves are but beasts. 19 For what happens to the children of man and what happens to the beasts is the same; as one dies, so dies the other. They all have the same breath, and man has no advantage over the beasts, for all is vanity.[b] 20 All go to one place. All are from the dust, and to dust all return. 21 Who knows whether the spirit of man goes upward and the spirit of the beast goes down into the earth? 22 So I saw that there is nothing better than that a man should rejoice in his work, for that is his lot. Who can bring him to see what will be after him?

Insignificantly significant

The older I get, the less significant I  feel, the more trivial my worries seem, and the fuzzier my memories become.  I wonder why I ever believed what grades my kids got mattered, or why it was so damn important for them to clean their plates.  The day-to-day moments of life with kids have all just melted into a giant conglomeration of individual moments, events, and flashbacks, almost impossible to distinguish what happened when and where and to which kid.  My recollection of my life from ages 25-50 is like that PlayStation game, Katamari, where you push around a sticky ball and collect any items you see. The more stuff you roll up onto the ball, the bigger the ball gets, and you can then pick up larger items--even cars and whole cities.  

Somewhere in my katamari are potty training successes and failures, first steps, emergency room visits, report cards, first dates, countless military deployments, arguments over whose turn it is to do the dishes, admonitions to clean up rooms, and countless other moments, the significance of which in life as it is today escapes me.  I try to recall.  I really do.  But when I try, one (or all) of my adult children challenge my memory recall skills with a roll of their eyes and an “oh mom.”  And God forbid I share a story with their kids without first clearing it with my daughters.  I mean seriously?  Give me some credit here—I am not going to embarrass, shame, or expose horrible secrets or bad behaviors to my grandkids.  It’s as important to me as it to them for my daughter/their mom to be seen in a good light. 

All of this leads me to my point.  (You were hoping I’d get here eventually right?).  Which is:  all of those memories, that ball of stuff collected over the years, it makes up my life, a lifetime of big and little and minuscule moments in time.  Some good, some not, some horribly painful and quite a few breathtakingly joyful—but every single thing in that glob is both gloriously insignificant and significant.  It’s who I am.  Who I was.  Who I’m becoming. And why does it matter if I don’t remember the gerbil’s name or whether I never apologized for missing a 6th grader’s basketball game?  Why do I beat myself up for things I said or did or didn’t do when I cannot go back and redo those moments?  I cannot separate it all and line it all up in a nice neat continuum in sequential order.  My memory is not capable of that. 

I can barely remember what I had for dinner last night.  

But...and here’s the kicker...I can make new memories and tell new stories and sit back and be a part of my daughters’ memories, and my grandkids’ recollections, as they create their own balls of stuff, collecting moments and treasured points in time.  

I cannot think of any greater joy and privilege than to be rolled up in their  ball of life. 

"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"  Jeremiah 29:11

Pride goeth before the...

I see it in others.  In my brother who, even though he’s mentally retarded, has the innate selfish nature of a young child, who wants his own way. I see it in my brother-in-law when he talks about his network, his "people" who can get him great deals, his justification and rationalization of misappropriating money.  I see it in my husband when he tries to minimize his brother's actions so he can maintain a relationship.  I see it in my sisters who think ill of me just because my parents chose me to handle things after their deaths.  I even see it in strangers in their thinly veiled attempts at validation in their posts on Facebook.  But what about me?   What is this blind spot that I so willingly allow to cover my prideful thoughts, my insecurities, my need for validation?

I argued with my husband today...all day.  Off and on, but all day. Not yelling or confrontational or in his face.  No, the little digs and comments under my breath, the kind of fighting that sneaks up on the other person, then runs and hides behind false civility and an innocent look of, "Who? Me?" Because selfishly, pridefully, yes sinfully, I want to be in control of everything in my life, including those things others have to work out for themselves. Especially things that involve our life together.  And I lie to myself that I feel the need to help (translation, to control), because we are married, we are one, and because he is me and I am him and we are one together. Right.  I am me.  Me.  Me.  Me.  And I want to know when, why, how, what, and where for just about everything that affects us.  Because I trust no one.  

Not even him.

Sounds awful, doesn't it?  

And no matter how many times I tell myself it is because of all the hurt and betrayal I have endured, it is actually because of my pride.  Pride that is camouflaged as insecurity.  Pride that hides behind rationalizing.  Pride disguised as the strong survivor/former victim. 

Pride that goes before the fall. The fall from submitting to God's will. Because pride is more than just being arrogant or full of oneself or thinking I am superior to others.  Pride is putting my will, the will of SELF, before all else, including focusing on my own problems, my own fears, my own desires.  

Incommunicado

No more will your sick toxic presence fill our doorway with its stench 

For you made your choice years ago, aligning yourselves with lies and hate

You abandoned truth and justice

Choosing instead to chase after a misguided sense of duty

Then you infected the hearts and minds of your children,

Your friends and family with your twisted tales and sour gossip

Pleas for reconciliation went unanswered 

All attempts to reach out abruptly ignored

So pervasive, so thorough is your hatred

Not even illness and death of our parents softened your hearts

Instead, you grew more distant, more bitter,

Planting even more seeds of mistrust and falsehood

You shunned us at their deathbeds, mocked me at their funerals

Never once reaching out, or sending a card, or to offer a hand

Too afraid to face us like adults, you slandered us behind our backs 

Sending vindictive emails to everyone in our family

And now you think you can call our home, leave messages on my phone

Asking to speak with a disabled brother you’ve neglected for decades

A 68 year old man-child who has lost his parents and his home

Who cannot understand what he’s done to deserve to be ignored

You think you can appeal to my fears

That I don’t know your tricks, your lies and how you create your own truths

Manipulating others with your fake manners and your pseudo Christianity 

Yet you call and text and say you want to talk to him

Without speaking to us

Without an explanation 

Without an offer of help

Without a thank you or acknowledgement for what we do

Every minute, of every day

We love him too much, we honor our parents’ wishes too much

To let you poison his heart and confuse his psyche

We are his guardians

We are his protectors 

We are his stability 

We are his family

And you will never hurt him or leave him again, as long as we live

We see you for what you are

Sad, jealous, damaged shrews

Who build themselves up

By tearing others down

Christians we are, yes, and to live like Christ is our goal

But even Jesus shut toxic, hard-headed people out of his presence

So adieu, farewell, and good riddance

We are not friends, we are no longer family

Leave us alone, and go on with your lives

As for me, I'm with Bob Dylan when he says, 

"I wish that for just one time you could stand inside my shoes

And just for that one moment I could be you,

Yes I wish that for just one time you could stand inside my shoes,

Then you’d know what a drag it is to see you"

Non-negotiable

non·ne·go·ti·a·ble

/ˌnä(n)nəˈɡōSHəbəl/

adjective

adjective: non-negotiable

1. not open to discussion or modification.

   "the essential features of the constitution are nonnegotiable".

Ask yourself these questions:  What are the non-negotiable things in my life?  What do I revere?  What is my ultimate joy? Finish the sentence: Without _____________, I am nothing.  

Dangerous thoughts.  Dangerous waters to tread here.  Because what we love defines who we are.  What we love shapes us, what we revere we resemble, either to our ruin, or our restoration.   

So, you ask, what do I love?  I thought about this, and, while I would love to provide some profound and innately good and selfless answer, the truth is oh so much uglier.  Because, most of all, I revere, love, chase after, yearn for the approval of others.  I crave acceptance,  people to see my heart, to know my true intentions, to NOT think ill of me or misunderstand me.  

How sad.  
How pitiful.  
How selfish.  
How prideful.  
How human.

So what SHOULD be my non-negotiables?  Love.  Love God.  Love my neighbor. Period.  

I'm working on that--it's a bit like cleaning house.  I dust and mop and vacuum and still, there are the dustballs that hide in the corners, under the bed, and on top of the refrigerator.  Spider webs in the corners of the ceiling, dead bugs in the light fixtures, rings on the coffee table where someone left a wet glass for too long.  Eventually I will get it all, clean it all, throw all the dirt out and be made shiny and clean and new, but I am not there yet.  A work in progress.  But a new creation in Christ.  The old is gone, the new is here.

And that, my friend, is truly non-negotiable.