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. 

Living in the Now

I am struggling to understand this concept.  I do not think I have grasped the essential wisdom of it.  It seems to me that I live too much "in the Now" - tending to whichever crisis is shouting it's need at me most loudly.  Living in the current crisis leaves me with a distinct feeling of claustrophobia.  I do not have room to expand or plan.  I am reactive instead of proactive.

I have read many books which talk about the wisdom of living in Now, but I still do not really understand it.  Part of the trouble, I suspect, is the inherent responsibility of possessions.  I own a house with a roof, for example, roofs need to be replaced on a regular basis and paying for the roof is not something one does without planning ahead.  Where does future planning exist in "living in the Now"?

My chosen lifestyle requires a lot of "giving thought to the future".  I see how Jesus or Buddha or Richard Rohr or Thich Nhat Hahn or Ekhart Tolle etc. have arranged their lives so that they can accept what comes to them with grace and wisdom.  I admire that, but I do not see how I can emulate that.  I cannot take the advice of Jesus to the rich man and sell all my possessions and live the life of a mendicant.  I need electricity to run Sam's machines.  I like air conditioning and heat.  People in Chicago regularly die if they do not have one or the other.  I really don't want to lose Sam or to die myself simply because I didn't plan ahead and budget well enough to pay the bills.

When I look for peace, I rarely find it Now.  I find myself fighting to rise above the Now to get a clearer perspective.  Now is usually terrifying.  There are too many things that need doing Now and most of them seem to be begging me to instantly save them from destruction.  Everyone and every thing in my life seems to need me to do something Now.  If I do not step aside from the current moment and reflect on things other than Now, I descend into chaos.  I cope.  I react.  I loose track of what is important to me.  I lose track of me.

Stepping outside the stream of life, reflecting, planning, pausing, praying, ignoring Now, I find a modicum of peace and the space to untangle the threads that pull me out of shape.  I reform myself and can begin to make decisions about which threads I want to pick up and which ones I want to let drift away in the wind.  But stepping outside is hard.  I need to fight for my solitude - fight myself and my impulse to surrender to the demands of Now.   It is far too easy to allow myself to drift in the chaos of Now and be swept away by the expectations of the people and possessions in my life.

I am learning that "Yes" and "No" are the two most powerful words in my vocabulary and both need to be used with caution.   I need to pause, at least momentarily, and reflect before saying either "Yes" or "No".  When I am swept away by the chaos of Now, I give myself away without thinking and usually it is by saying "Yes" or "No" thoughtlessly.  I am too prodigal with myself when I live in the Now.

And yet, when I listen to these wise men talk about their concept of Now, I realize that they are talking about something substantially different from what I experience.  I think my failure must have something to do with a difference of definition.  I have trouble grasping what they mean.

I think they have a lot less need to feel control and a lot more trust in the universe or God or whatever they call it, than I have.  I do not trust God or the universe to have the same priorities that I have and so I feel a deep need to control or at least try to control at least some of my circumstances.  I realize that God/the universe is more powerful, capable and even ultimately more kind and loving than I am on a global scale, but it seems clear that we are not more important than the lilies of the field and our individual survival is not of paramount importance to that force/entity.  So my individual responsibility is to take care of myself, Sam and my little corner of the earth.  For that, I need perspective and time outside Now to think.

Clearly there's something I don't get yet.

Religious Tolerance?

I was just remembering a wonderful conversation I once had with two people from Lebanon.  They were both Christians.  In fact, they called themselves Phoenicians and not Lebanese to distinguish themselves from Muslims who were also born in Lebanon.  They told me that they are direct descendants of the very first Christians and assured me that their style of worship and their theology was more "authentic" than Protestant, Catholic or even Orthodox Christianity.  I eagerly asked for more information.  

They were proud of the fact that their country is religiously tolerant.  They went to school with people of many different religious backgrounds.  They told me that they believed their country had a good chance of remaining peaceful because they grew up being friends with people from different religions.   (This belief was very strong in spite of the fact that one of them was living in the United States by choice as political refugee and the other was the son and grandson of refugees.)

I come from a very conservative evangelical Christian background which has long felt too narrow for the world in which I find myself.  I was fascinated by their very different understanding of Christianity, the bible and what it means to practice their faith.  I asked them about conversion.  Does anyone ever change from one religion to another or does anyone ever fall in love with someone from a different religion?  Apparently this does happen occasionally, but it is a very big problem.  Although they go to school with each other, each religion lives in a separate part of town and they all have last names that identify their religion.  Each of them had relatives who had married into another faith tradition and I got the idea that those relatives were not really welcomed into their families anymore.  

This struck me as both more and less tolerant than my own evangelical tradition.  I grew up believing that I had a moral mandate to convert everyone I met - for their own good!  It was unthinkable for me to pass up an opportunity to save someone from the fires of hell.  So religious tolerance in my youth was practically non-existent.  On the other hand, I can't imagine abandoning a relative because they married a non-Christian or choosing what house I buy based on the religion of my neighbors!

It seemed to me that they were saying that peace and religious tolerance were preserved by a careful balance of "separate but equal."  This flew in the face of everything I had learned as a child about the importance of saving everyone we met.  I asked them what they thought happened to their Muslim friends when they died.  They both looked at me blankly as if the question had never occurred to them.  Then one of them said thoughtfully, "Well, I suppose they go to their own heaven."  

This conversation was a real turning point for me.  I certainly didn't become an expert on Phoenician Christianity in one conversation!  But I learned it is possible to agree and disagree without desiring to change another.  It is possible to learn something new without accepting everything you hear the other person say.  It is possible to appreciate and respect a point of view you do not entirely share.  It is actually delightful to have a conversation with people who are different from me, to understand them a little better and to see myself a bit more clearly and walk away without changing them at all.

That conversation was many years ago.  I have had so many great experiences in my life and have allowed them to mold me.  I have learned to be myself among so many different kinds of people and revel in the differences.  I think true tolerance must be based on that "I Thou" principle.  I know who I am and I love who you are and I celebrate the fact that we are not the same.

This is true especially in my marriage.  Charley is eternally someone different not only from me, but also from who he was yesterday!  And yet he is firmly committed to the idea that we are exactly the same.  And that's really okay with me.  

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.

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".

Control Issues

I just don't get it.  I did everything right.  All I wanted to do was go to church and sing in the choir.  So yesterday I spent the whole day focused on doing everything possible to make sure Sam got a good night's sleep.  I changed the clocks forward first thing in the morning hoping to "psych" us all into the time change.  I fed him regularly.  I made sure to pay attention to him so he didn't feel ignored.  I did his 45 minute treatments three times and I made sure his medications were correctly balanced.  I even changed the furnace filter because it was looking a little gray on the theory that clean air helps him breathe better.  (It's just a theory.  The allergist says he's not allergic to anything.  His breathing problems are because of the way his head is shaped and because of the way his brain works.)

I bragged to a friend that I had finally reached acceptance of the fact that my number one priority is managing Sam's lungs.  If I do the treatments correctly and get him to the chiropractor twice a month, he is fine.  Even the apnea is reduced.  If I let the schedule get out of sync, he is miserable.  And so am I.  It's a very plain fact.  My life is ruled by this routine.

How nice.  How safe and predictable.  I am secure and in control of my life.  Keep it simple and keep it sane.  That's my motto.  Stress and failure occur when I rebel, peace and success are the result of faithfulness.

Wrong.

In spite of doing everything right, Sam and I were up until 3 am.  He was groaning in sinus pain and trying to be brave.  I was tender and sympathetic and trying not to hit him over the head or give him whiskey.  I WANT TO SING IN THE CHOIR!!!  Can't he get that?

 How deeply spiritual I am not in the middle of the night.  On Friday I did the Stations of the Cross and Taize and then Luis gave a very lovely bi-lingual talk.  I sang.  I read really good scripture verses.  I got to see so many of the people I love.  Rosie and I actually talked about how important it is for choir members to worship as they sing.  It makes a big difference if we worship instead of perform.  I don't do either.  I just love to sing with other people.  Well, maybe that's worship on a very primitive level.  I only get to do this twice a month on a good month.  I miss those two Sundays often because of Sam.  

Two weeks ago I gave a talk at another church.  One of the major themes of my talk was we are not in control.  Why do bad things happen to good people?  Because bad things happen to all of us.  God does not cause them to happen.  They are not part of God's divine plan.  The Bible is full of stories about bad things happening for no reason or because of an enemy.  Whether the enemy is a person or an event or Satan, bad things happen and people in the Bible turn to God and ask for help.  Joseph says to his brothers, "You meant it for evil, but God meant it for good."  Paul says to the Romans, "All things work together for good."  In other words, God answers prayer and comes to us in our distress and redeems the situation.  Sometimes.  God redeems us always.  Eventually.

Last week I got to go to SPRED church.  We all three made it and Charley played with that choir.  It is a wonderful sound.  I do worship when I go to SPRED church and especially when I hear Charley playing lovely music.  The message from Fr. Jim was something like "Jesus says to you today where you are standing right now is holy ground.  Let the fire of my divine presence grow within you.  Nurture it."  I'm home this morning.  Where I stand is holy ground. I have a Bible and some really good tea and Sam's asleep.  I can go upstairs and turn on some music and nurture the divine in me.  That is always a possibility.  

I spend soooo much time alone I'm becoming a Desert Mother and not by choice. 

I have often said that I don't have any choice or control over the bad things that come to me.  BUT I do have a choice about how I will respond to them.  That's the part where God comes in.  God is apparently not going to intervene and make Sam healthy.  But God can help me appreciate my time with him and love my life and manage the difficulties, if I ask.  Although I wouldn't say no to a healing...

But in spite of all my wisdom and 28 years of learning the same lesson over and over and over again, this morning I'm just grumpy.  I didn't get enough sleep last night, I was scared and unsure what to do for most of it and this morning I don't get to sing with the choir.  Life's not fair.

Do you know that the divorce rate among families who have a child with disabilities is somewhere around 98%?  The fact that I make it to church at all is due to the fact that we remain a two parent household after all these years.  There's a miracle.  Charley is playing his saxophone this morning in our old church.  I hope he gets a lot of love and gratitude.  I hope he comes home feeling good and refreshed and ready for another week at work.

I hope I get to go to church next week.  AND SING!

Macbeth Poem

Hi to all my new friends at the St. Mark Lutheran Church in Worth, Il!!!

Here's the poem, as requested.  I wrote it when Sam was about 2 1/2 years old.

Child Victor

Born: Like Caesar
Natural child
Torn in unnatural manner
From natural mother
Into cold, unnatural sterility.

Purple with rage,
You tore needles from your flesh
Until they pinned you down.
In that world of hoses down throats and bright lights
And rock music
YOU
Were a giant.

"He will never see,
Never walk, never talk,
He fails to thrive.
Profoundly retarded, profoundly disabled
And probably
A Dwarf."

You laugh.
And seeing me at the far end of the hall,
Cry, "Mama!"
As you slowly inch your way down your own
Olympic course,
And finally,
Reach your goal.

I lift you up.
With four gold medals glowing in our four eyes
We two alone, are buffeted
By crowds of angels
Cheering.

"He will never..."
That lies like truth.
Never: 'Till Burnham Wood do come to Dunsinane

In two short years,
I have seen you do what no Doctor
Born of woman
Believed you could do.

So lead on MacDuff and Damned be he who first cries
"Hold enough!"

By Jeanne Forsberg with help from Shakespeare.

Jonah and the Whale

For some reason, several people have spoken to me lately about this Bill Maher movie on religion. Seems goofy to me. I mean, who cares what he thinks? He's cranky! But I did just waste half an hour trying to figure out what I actually think about Jonah and the Whale. I haven't thought about him since I was a kid! So I haven't even seen the movie and it's making me think. That's never a bad thing, is it?

So here's what I came up with:
"There's more in heaven and earth than are dreamt of in your philosophy, Horatio." Maybe it could have happened. But I don't really care! It isn't relevant. I don't think it matters whether or not there was a Jonah, let alone whether or not there was a whale!

Myth often brings us truth more profoundly than fact.

So the point of that story is not the whale. The point of the story is... well what IS the point?

More often than not, control is an illusion and safety a gift.

If God is trying to speak to you, it is better to listen than to run.

In this world, the answer to the question, "why" is usually silence.