Bill Leslie in Me

 For many years we attended LaSalle Street Church and for most if those years we both worked for LaSalle in one capacity or another. I was Bill's secretary for awhile. Bill was founder and senior pastor. 
 
 I forget the exact number, but I think it was 480. He used to say "There are over 480 verses in the Bible that speak of God's identification with the poor but only two that speak of the virgin birth. One of those actually says a young girl shall conceive."  The point being that our priorities need to be adjusted. 
 
 Social Justice starts in the Old Testament and runs through the New Testament like fire. But as you read the verses you will see that God is not calling for "bleeding heart liberalism" or throwing money at the problems of the disenfranchised - although I remain a democrat - but a sacrificial communion with that population. Meeting them as equals and receiving as well as giving. 

 That kind of equality is terribly difficult for those of us who grew up entitled. I am not sure most of us at LaSalle ever truly achieved it. 
 
I have been the mother of a son with profound disabilities for 30 years and the wife, for close to 40 years, of a man who has been a minister, a public school teacher, a janitor and unemployed. He is currently a school bus driver. We are now impoverished ourselves and live in a community that would have terrified me 40 years ago. Yet I am still conscious that my education, my accent, my skin color, my posture and my assumptions all still communicate authority wherever I am. I am still treated with more respect in stores, restaurants and laundromats than my neighbors. When I take a friend to a hospital or doctor visit, for example, the doctors and nurses invariably speak to me as though I am the guardian or person in charge of the friend (black, Latino or disabled) who is the patient, after all.  The friend will be ignored as if invisible unless I direct the doctor to speak to the friend. What is even more disturbing to me is how often the friend is not just okay with this but seems to welcome it and readily defers to me, clearly thinking they will get better care that way.  And they are probably correct. This is one way I can be of service to my friend: to make limited use of my power as an over educated white woman without ever mistaking that power for superiority. 

In our neighborhood, we are the "go to" people whenever a neighbor has to interact with public officials. We spend a lot of time reading and filling out complicated forms and advising people regarding confusing notices they receive. It seems to me that the complication of arcane paperwork has an inverse ratio to the educational level of the recipient. It is amazing how many intrusive and ridiculous yet terrifying forms poor people must fill out!  Although it is time consuming and seems thankless, our front lawn magically never seems to need mowing and the winter Charley had surgery I never had to shovel our front walk.  Of course, Sam Care comes first and it is sometimes important to say no, but helping is what friends do for each other and we try to do what we can. 

 We will never be like our friends. We can only be ourselves as honestly and faithfully as we possibly can. We do not "bear witness to Christ" in the way most Evangelicals mean it. We simply live our difficult life along side our friends who are leading equally difficult lives and by that witness we are all transformed. 

Walt Whitman

Darest thou now O soul,

Walk out with me toward the unknown region,
Where neither ground is for the feet nor any path to follow?

No map there, nor guide,
Nor voice sounding, nor touch of human hand,
Nor face with blooming flesh, nor lips, nor eyes, are in that land.

I know it not O soul,
Nor dost thou, all is a blank before us,
All waits undream'd of in that region, that inaccessible land.

Till when the ties loosen,
All but the ties eternal, Time and Space,
Nor darkness, gravitation, sense, nor any bounds bounding us.

Then we burst forth, we float,
In Time and Space O soul, prepared for them,
Equal, equipt at last, (O joy! O fruit of all!) them to fulfil O soul.

Found this poem by Walt Whitman on the back of vinyl record - Ralph Vaughn Williams put it to music.  When Charley read it to me, I thought he was sayingn "Old Soul" which makes a very poignant kind of sense.  I am reminded again that the path to enlightenment and the path to acceptance of death are very, very similar.  Both can be very good.  Or not.

Lent

Charley's car needs some rather costly repairs and it's about 15 years old.  So before we fix it, we're trying to see how it would be to have only one car.  Cheaper for us, better for the environment and, when Sam doesn't have pneumonia, we'll benefit from doing our errands by foot in the neighborhood.  On nice days, Charley can take public transportation or ride his bike and I can have the car if I need it.  Now, if I can remember to make all doctor appointments on nice days...

This means yet another very large change (I refuse to say sacrifice) on my part.  I am a bird who has volunteered to have her wings clipped!  So for Lent, I guess I'm giving up one more freedom.  This time it is partly to benefit the planet (and the pocket book).  For the last year or so, I've been slowly surrendering all my freedom to Sam's health needs.  We now let him sleep whenever he wants which means he no longer goes to school and he is more than ever my constant companion.  His health is always precarious, so I am his devoted slave and nurse.  The lung doctor says that if it weren't for my care, Sam's story would have ended long ago.  When he smiles, I can't regret a single moment and I choose this life all over again.  

But I miss the world outside my living room window.  Especially now that it's spring.

Second Tuesday of Lent.  Readings for today are Isaiah 1:10, 16-20  Part of which goes:
Wash yourselves clean!  Put away your misdeeds from before my eyes; cease doing evil; learn to do good.  Make justice your aim: redress the wronged, hear the orphan's plea, defend the widow.


And Ezekiel 18:31


Cast away from you all the crimes you have committed, says the Lord, and make for yourselves a new heart and a new spirit.


And Matthew 23: 1-12 which includes:


The greatest among you must be your servant.  Whoever exalts himself will be humbled; but whoever humbles himself will be exalted.


These verses encapsulate a large part of my personal understanding of what it means to live as a person of faith.  Seek justice, care for the disadvantaged, try to do what is right, maintain a realistic picture of yourself and your place in the world (humility) and no matter how badly you messed up yesterday, remember you can always start over again every morning.


How do I do that as a stay at home - stuck at home - mother of a young man with profound disabilities?  


Well, step one: stop feeling sorry for myself.  


Step two: remember how much the world is inside my living room.  Internet, tv, phones; I am in touch with the world in countless miraculous ways.


Step three: gratitude for my many blessings.  I actually do get to choose how I will live my life. Every morning.  I don't get much choice about what happens to me, but I do get a lot of choice about how I will respond.  And a lot of beautiful things happen to me every day, every moment, every breath I take - and every breath Sam breathes.


Step four: don't be stupid or naive.  I'm stuck at home, I don't have my head stuck in the sand.  I'm not blind.  I can take action and reach out.  Actually, I do a lot of reaching out.  These verses and this personal credo are not new to me.  I've been passionate about justice for most of my life.  I may be finally forced to accept that "charity begins at home" and forced to put most of my energy into self care and Sam care, but I can still impact the larger world in small ways.  "Think globally, act locally" takes on a deeper meaning when you don't leave the house more than two or three times a month!


In fact, if I had been able to construct the events of my life and not just my reaction to them, I probably would have become a bright star that burnt out long ago.  I would have thrown myself into some form of activism aimed at saving the world without counting the personal cost.  Being a wife and mother, being Sam's mother, has forced me to slow down, recognize my impotence and that I too have needs.  I am responsible for such a very little and incredibly precious and fragile fragment of the universe: Me and my family and a couple of birds.  At the same time I am part of the human race, and a resident of this planet.  Caring for myself and my family must take that into account.  My focus remains on the small world inside my living room and my awareness includes the larger world beyond it.  I buy plant based laundry detergent and sponsor children in Africa and welcome whomever comes to my door and sign petitions to end DOMA and donate to relief for tsunami victims.  But mostly I check Sam's oxygen levels and pay bills and fix meals.


Maybe all the events of my life are carefully aimed at bringing this co-dependent, Eneagram 2, earth mother with PTSD toward balance and perhaps someday enlightenment. 

True Wisdom

I had a great conversation with my brother Bil the other day.  As usual, we each gave the other a lot of stuff to think about.  Here's one gem:

He believes that the mark of true wisdom is that it engenders tolerance.  So God, who is all wisdom, is full of vast tolerance toward us.  In other words, as we try and try again to discern the will of God, God is continually saying to us, "Well that's not quite what I meant but, okay, we can work with that."

That rings true with my experience of God.   I think it likely that St. Peter would also agree.

All Right

Yesterday Charley was in so much pain he took 2 narcotic pills (maximum dose) and he was bleeding rather profusely outside his catheter.  He can't control it, so I've got blood drops all over the floor.  There was such a quantity of blood and pain that the nurse advised us to go to the ER.  Barb H generously agreed to come over and sit with Sam while we went.  She not only sat with Sam, she gave him his treatments twice, fed him, and came up with some good ideas for taking care of him.  Oh and washed dishes.  What a rare and wonderful person she is!

Anyway, as we drove to the hospital, Charley knelt in the back seat, rocking to control the pain and singing "He's A Ridiculous Man".  He sounds a little bit like Bono!  That was a moment to remember.  I was driving, trying not to have an accident or hit too many potholes, and listening to my poor, pain filled spouse sing amazingly well.  I could live in that moment, unwrapping it, for a long time!

Turns out that his catheter was clogged, and he's having bladder spasms.  Neither situation is really very serious, it's just that we've never dealt with this situation before and we over react, apparently.  Once again, we see the difference between the medical point of view and the experience of the patient!!!!  They think everything is going well and we think this is one incredibly bad experience!

Well-wishers keep telling me "It's going to be all right."  What does that mean exactly?  When is it going to be all right?  What is this "it" that's going to be all right?

Actually, my past holds lots of moments.  They fall into many categories like absolutely wonderful, pretty shockingly awful, sad, painful, joyful, funny and all right.  I'm pretty certain my future holds a similar list of moments.

In fact, today, this moment, "It's" all of the above.  Most moments are.  I think that's why people recommend we learn to "live in the moment".  This moment is so complex that, if I focus on it with all I've got, I still won't realize all of it before it's over and the next moment begins.  This moment holds the whole world.  And that is riches enough for anyone.

Sinsinawa

Years ago I met a woman who had cared for her daughter at home until the daughter's death.  She told me that, during her many years as primary caregiver, she learned the value of "cleaning her pipes".  Every few months she would go on retreat and just cry.  She said "Why?" was not a question she bothered with much.  She just cried.  Then she slept.  Her husband didn't understand why this was so important, her friends worried about her, but it was the single biggest piece of advice she had for me as a new mom with a son with profound disabilities.

I don't remember this woman's name!!!! But she is one of my wisdom figures.  I think she was the first person (not counting the Book of Job) who told me that "Why?" is a pointless question. It just drives one crazy and never gives an answer that satisfies.  I took her advice on the retreat thing and did indeed go on retreat one day a month for years.

Then my dad got sick, and then he was murdered and Ben got married and my life sort of shifted.  I haven't been on retreat in over 5 years.  So when I realized that summer was almost over and I was so far beyond exhausted that I didn't even remember what exhausted felt like.  I knew I needed a break.  But there isn't a lot of money for a vacation.  That's when I remembered this woman's advice and the fact that, at one time, not too long ago, I was a Spiritual Director.  If anyone should know where to go on retreat, it is me!

So I started calling places I used to know and was startled to find that there are actually people in these places who remember me!  I don't remember me, but they do.  And I booked a 5 day stay at Sinsinawa Mounds, Dominican Conference Center.

There, with the help of a very wise and funny director, I began to let go.  Here in the city with my stressful life, I don't realize how tense and wired I am.  There in the peace and quiet, I suddenly felt like I had electric current running through me.  I couldn't settle, I couldn't sleep, I couldn't think.  I just vibrated.   I was in shock.

There's no huge event in my life that caused this shock, it's the cumulative effect of everything.  I don't have Post Traumatic Shock Disorder, I have Chronic Traumatic whatever.  

Sure enough, after about 24 hours of vibrating, I suddenly crashed and I cried.  And then I slept.  I slept, I ate, I walked, I ate, I knit, I slept, I ate, I slept, I knit, I slept.  Then I cried some more.  Then I knit.  Then I slept.  All the journals and books I brought with me lay unopened.  I did buy three more books and bring them home to read...

(I love these words.  "Wired" as in I was vibrating with electricity and adrenaline.  "Shock" as in hit by lightning that was attracted by the electricity running through my nerves. "Crashed" as in a bullet train hitting a mountain.) 

The only thought I had was that humility is knowing who I am.  I have limitations, I am not God.  I have gifts which are given to me by God.  I am nothing more (OR LESS) than simply me.  

Humiliation, on the other hand, is something that happens to me when I forget who I am and try to be someone I'm not.  God, for example.  Or Martha Stewart.

Sr. Ellie, the wise and funny director, suggested that I feel empty because I have let my gifts lie dormant.  Perhaps that is so.  Perhaps I am so distracted by my attempts to keep Sam going and the house picked up that I neglect to use my gifts.  What are they again?

5 days is not enough.  I could have stayed 3 weeks.  I'm back home and am still struggling with the desire to sleep and knit and sleep and eat and sleep.  I have a few other things to do, but I'm trying to remember to focus on what is most important.

For me.

I am so grateful for the wise women who always seem to come into my life just when I need them most!  I would say that my "pipes" are cleaner now, but still a bit clogged.  I need to take seriously the advice of the wise women and put myself and my gifts a bit higher on my "to do list".