May 29, 2014

Soap Bubble Grateful

I may have said this already, but I am struck by it increasingly, incrementally, in a widening spiral of awareness.  It has to do with gratitude.

I've always known I ought to be grateful.  I remember reading a very resonant passage, years ago, about that "ought."  I know it in my head.  I have so very much -- health, wealth, family, friends.  All I could want or need.  I ought to be grateful.

But I haven't always been.  Instead I've been restless.  Disgruntled.  Impatient.  Worried.  Longing for something that I don't have, even when I don't have the slightest idea what that might be.  I don't think I'm unique in this.  There's this hole inside, and we all want to fill it with something, and we might even know that it's, as they say, "God-shaped," but God is mysterious and invisible and what would it mean for God to fill that hole anyway?  So the sense of emptiness, the lack of fulfillment remains, a nagging doubt, an itch that can't be scratched.  The ought is mental; the itch is visceral.

As much as I always have to be grateful for, these days I have decidedly more.  People are making us meals, cleaning our toilets, weeding our yard, driving me places, loaning us equipment, bringing flowers and chocolates and company.  I am grateful.  Not ought-to-be, am.

But there's this other sneaky little thing that happens in my head.  People come and give and give some more, and my mental accountant wants to keep a tab.  She starts tallying up how I can someday repay all of this completely gratuitous generosity.  I actually said out loud one day, "I'll never be able to repay all of these gifts."  You don't repay gifts.  That's not what a gift is, something to be repaid.

And, if there were cause for repayment, I couldn't accomplish it in a dozen lifetimes, let alone one.  I could never make these many meals, make adequate return on these many offerings of love.  Never.

All I can do is receive.

I made myself a promise as I realized that we were going to need help and lots of it that when people offered, I would say, "Yes.  Thank you."  Period.  I would not pretend not to be in need, when we are so clearly in need.  I would not second-guess someone's willingness or sincerity.  I would say, yes and thank you and trust that my family and friends are adults and know what they can do and are willing to do and are offering what they want to give.  I have said yes to a brand new $350 fancy blender bought with pooled money and delivered in love.  I have said yes to a visit from a dear friend who has to take an airplane to get here.  Yes.

Then there are the times that, in spite of the many generous offers, I need to ask for the help that I need.  This is even more difficult.  But I have no choice.  It's not virtue, but necessity, so I do it, sometimes through gritted teeth, sometimes through tears, always through too much apologizing.  I have to ask for people to come and sit with me so that my 10 year old doesn't have to make my lunch again.  I have to ask people to lift me up and down stairs so I can leave the house.  I have to ask people to accompany me to the toilet.

Not every job is for everyone, so we're all discerning.  I have one friend who can hitch up my underwear and bring me chocolate milkshakes and sit and listen to me cry and make me laugh, but she doesn't do dishes or bring casseroles.  That's good, or we'd have too much casserole.  On the other hand, by God, we need the casseroles, some of which have been delivered by people whose names I didn't know, people who worship with us, but whom we have never even met.

I sometimes feel grateful to the point of being overwhelmed, teary, speechless, in awe.

But more even than that, there is gratitude that has quietly risen to the surface in tiny, unexpected ways, like soap bubbles, effervescent, fragile.  If I weren't moving so slow, I wouldn't be paying enough attention, and I'd miss them.  They'd disappear before I saw their fragile surfaces reflecting the light.

It's the gratitude I feel when I look at Green Mountain, near our home, and see how green it is.  I'm not out much, so days go by and the season is changing without me, and I notice, like you do when you see a child you haven't been with in a while and say, even though she hears it all the time and is sick of hearing it, "You've gotten so big!"  "Green Mountain, you've gotten so green!"

For days and weeks eating was difficult.  Meals take more effort than I ever knew -- sitting up, getting a fork to my mouth, swallowing.  It was all too much work, and I relied for some time on a lot of blended drinks (hence, the gift of the blender).  Now my swallow is improving and I can eat most solid foods again, and I cannot get over how delightful it feels to chew and swallow and feel my stomach fill and remain satisfied for a long time, even on the prednisone, that makes me hungry all the time.  I am grateful, soap bubble grateful, for solid food.

I trust that other little miracles will bubble to the surface.  The first time I am able to wash my own hair again or get out of bed by myself or climb the stairs or walk the dog or drive the car.  I don't want to miss them.  I don't want to be moving so fast that the come and go, rise and pop, before I notice them.

May 26, 2014

Medical, Medical, Medical

Today ends my fifth week on prednisone, a synthetic corticosteriod drug invented in the 1950's.  I am not a doctor and chemistry was my very worst subject in school, so my understanding of the mechanisms involved is loose, verging on metaphorical.  What I know is that this medicine works almost immediately to quell an overactive immune system.  It is used to treat allergic reactions and certain cancers, in organ transplant cases, for chronic headaches, heart conditions, and a host of autoimmune disorders, of which myositis is one.

The research on the cause of autoimmunity comes up mostly empty.  People, scientists and lay patients alike, have their theories, but no one really knows why, in some people, the body's immune system becomes overwrought and begins to attack the body's own tissues.  Manifestations are myriad.  Myositis, in its various forms, means that the muscle tissue (myo-)  is inflamed (-sitis).  In rheumatoid arthritis, it's the joints that suffer.  Alopecia areata causes damage to the hair follicles.  When the bowel is involved it is called Crohn's disease or ulcerative colitis.  Forms of hepatitis and diabetes, celiac and psoriasis are all forms of autoimmune disease.  There are eighty or more recognized autoimmune conditions.  They affect more women then men, especially women of a certain age, of which I am one.

Autoimmune diseases have no known cure.  They are managed with pharmaceuticals.  Prednisone is the front-line drug because it is fast-acting and reliable.  It comes, part and parcel, with a range of dastardly side effects, so, for most people, taking it is a bit of a pact with the devil.  I already have the racing heart (no more coffee for me), occasional (thank goodness) insomnia, and moodiness (my poor family).  I am (not) looking forward to the (potential) growth of additional facial hair or the nearly inevitable (at high doses over time) redistribution of body fat from the normal places to the face ("moon face"), and back of the neck ("buffalo hump" -- I kid you not).

When I first visited a rheumatolgist (specialist in inflammatory conditions like mine), I was determined -- no prednisone for me!  I left her office with a 20 mg. tapering dose; you never stop prednisone cold turkey, because after a week or two it sends your adrenal glands on vacation, and they need time, on a tapering dose, to remember that they have a job to do.  Cortisone is normally made by the adrenal glands, and you need it for important things, like telling your heart to keep beating.

I didn't want the prednisone, because I claim I don't like putting artificial stuff into my body.  I imagine myself as Crunchy Granola Girl -- even, I must hypocritically confess, when I have a bag of strawberry Twizzlers in one hand and a Diet Coke in the other.  The two tapering doses of the prednisone I ended up taking as my symptoms developed performed as advertised, easing my pain and stiffness while making my heart beat like a big brass drum.

In between those courses, I tried the alternative route:  accupuncture and a liver cleanse.  My family would tell you that drinking my one to three cleansing shakes a day, sans dairy, soy, gluten, corn, tomatoes, and potatoes made me far moodier than my current 100 daily mg. of prednisone.  My Very Special Diet made me moodier than my pain did.

As for the acupuncture, after six or seven sessions, my acupuncturist kindly acknowledged that perhaps her art was not the "modality that best resonated" for me.  Needles in my hands and feet and legs and neck and abdomen only made me increasingly anxious with each visit.  Meanwhile I was having more trouble climbing the stairs and climbing up on the table to have her use applied kinesiology to test my muscles for allergic sensitivities.

The muscle test I really needed was performed by a neurologist.  I love her.  I prayed that I might have a doctor both smart and compassionate.  I got one.  What's more, she's funny and she thinks out loud and it didn't bother her that I walked into her office with my own ideas about what was wrong with me after spending the better part of five months consulting with Dr. Google.

After literally dozens of normal and almost-normal blood tests, the neurologist pulled out her own set of accupuncture-like needles, stuck them in my muscles (in a test called electromyography, or EMG) and was able immediately to tell me that my muscles were not responding to the perfectly normal, healthy (thank heavens) signals from my nerves.  A biopsy of a muscle in my right thigh showed inflammation.  Hence, the prednisone.

My strength has not returned, not much, not yet.  Particularly in the final month on the way down to rock bottom, I experienced a significant amount of muscle decomposition.  I now have the neck, shoulders, and cheekbones of a supermodel.  My butt is flat and my spine sticks out.  More people than you might think have said I look great, which isn't entirely surprising, as I have gone from a size 12 to a size 4.  I keep thinking I'll write a diet book and make a million dollars.  I may have to leave out some of the less appealing parts, like the yogurt for Easter dinner and the fact that residual flab is not as comfortable to sit on as muscle.

But the prednisone is working.  I have noticeably regained muscle control -- that is, even my teenaged son has noticed.  And my swallow is markedly better.

I am improving, and, God willing, in time, I will regain my strength and be able to resume some version of normal life -- washing and dressing myself, driving a car, cooking and cleaning, and the like.  I am not hopeless -- sometimes frustrated and impatient and ill-tempered, but never hopeless.

It has been almost seven months since this saga began, and I have had a lot to think about.  Some of it is as current as my aching tailbone.  Some of it is insight that I've been settling into for weeks or months.  Some of it is the dim horizon of a future with a chronic condition.  As I document it here, I want you, dear reader, to know, while we journey together, I'm healing.  And I'm grateful for the prayers that are urging me along.

Rock Bottom. Absolute Zero.

I hit the bottom right around Easter Sunday.  You don't need to know me well to surmise that I don't see that as accidental.  I learned some things that day, in my rock-bottom physical state, without knowing that I was at rock bottom, because the turn upward had not yet come.  I learned things about resurrection that I hadn't known before.  But that's not the word for today.

The day after Easter, in an email to my neurologist, I described my physical function as "approaching absolute zero."  That's how it felt, slowing, slowing.  Daily, the things I could do were diminishing, illustrated, maybe too graphically, by Easter dinner, which I could not swallow a bite of.  I could hardly get the fork from the plate to my own mouth, so my husband fed me a peach yogurt.  I was becoming as immovable as stone.

It sounds worse than it was, though I will concede that it looked pretty bad.  But on the inside, I felt better than I can easily explain.  I did not feel sorry that I could not eat the ham and potatoes.  I felt grateful that I could eat the yogurt.

Maybe that's what absolute zero can bring, that sort of acceptance.  Maybe rock bottom means exactly that, that we've arrived at the immovable ground.  There, at the rocky bottom, my choices were (and are, but we'll get to that another time) limited.  I could beat my head against the stone floor.  I could pound and scratch.  We, the rock and I, could have it out. It's not going anywhere.  Neither am I.  At rock bottom, in the moment of our arrival there, there's no way out.

A more subtle truth is that, were I really sitting on a floor of stone, I don't have the physical strength to beat or pound or scratch.  Maybe that bald fact is what made it easier for me instead to do what I did, which was to sit still and wait.
Come to him, a living stone, rejected by human beings but chosen and precious in the sight of God, and, like living stones, let yourselves be built into a spiritual house to be a holy priesthood to offer spiritual sacrifices acceptable to God through Jesus Christ.  For it says in scripture:
 "Behold, I am laying a stone in Zion,
a cornerstone, chosen and precious,
and whoever believes in it shall not be put to shame." (1 Peter 2:4-6)
Living stone.  Built into a spiritual house.  Chosen and precious.  We shall not be put to shame.   That sounds so very beautiful.  And it bears absolutely no resemblance to the picture in my mind of me, at the bottom of a  stone pit.  Not living or spiritual or precious.  Just damp and dark and grey and cold.  More like Joseph's well, deep and open at the top.  Like a tomb, only on its side.

Can both of those things be true?  Can the stone at rock bottom be cold and grey and precious and alive?

If that were true, we still might not want to live there, but we could build on the foundation. Cold, grey stone is good for that.  The wise man builds his house upon the rock.

"The stone which the builders rejected has become the cornerstone" (Psalm 118:22; cf. Matthew 21:42).  Those builders' expectations must have been more like mine.  Wouldn't it be better to find a stone that's not so rough, one that's not at the bottom of a well?  The Master Builder had other ideas.

Now here I am, among the rubble.  The Builder is rummaging around, and, evidently, He is going to use me too to build this spiritual house.  I've got to tell you, I wonder sometimes at His judgment.  As stones go, I'm a pretty ragged specimen.  It's going to take a fair amount of mortar to fit my jagged edges into a structure that's going to stand firm.  It's not likely to be pretty.

Sitting at Easter dinner being spoon-fed a yogurt is as aggressive a challenge as I can think of to "not being put to shame."  But I felt no shame.  I felt loved and fed.

May 22, 2014

In Sickness and In Health

It's my husband's birthday today.  In July we will have been married for 21 years.  We both thought we knew everything about everything 21 years ago, so we wrote our own wedding vows.  Our vow of mutual hope, "remaining faithfully by your side in good times and in bad," encompassed the traditional "in sickness and in health."

What did we know then of what that might possibly mean?  If I could ask the 26 year old woman that I was what she thought, I expect she'd say something about caring for him when he got old, making chicken soup to soothe a cold or even, maybe, sitting with him while he vomited.  I was ready to do all those things.

I was not ready for this.

It never occurred to me to think that I'd be the sick one.  I don't get sick.  Okay, a few years ago I had double pneumonia.  I was really sick then.  But that's it.  "I'm strong as an ox, healthy as a horse."  That's who I thought I was.  Not sick.  Not frail.  Not weak.  Until now.

"In sickness and in health" has come to mean him taking care of me.  I don't mean a pot of chicken soup and or holding my hair back from the toilet.  I don't mean a day or two.  So far it's been weeks.  We have every reason to think that we will eventually be measuring in months.

It starts when I wake up in the morning.  I need him to help me get out of bed, go to the bathroom.  I need him to shower with me, wash my hair and face and shave under my arms.  He helps me get dressed, fixes my  breakfast and lifts my arm so I can reach my mouth to take my pills, and so on until he swings my legs back into bed, shifts my weak hips and shoulders and collapses into bed himself.  Every day.

I can hardly type the words because I am so utterly overwhelmed by his generosity and my helplessness and my gratitude and his faithfulness.  In sickness and in health.

Marriage is a hot topic in the news -- who can marry whom, what defines marriage, whether marriage as an institution is still relevant.  What I know is that, those many years ago when we made this commitment, we saw ourselves as committing not simply to one another, but to something outside of and bigger than the two of us, that is, the marriage itself.  We knew, however dimly, that there might come a time when it wouldn't be enough for me to be pledged to him or him to me.  People change.  Feelings wax and wane.  Times get tough.  People get sick.

It's that commitment that allows him to serve me without word of complaint or self-pity.  It allows me to be served without being overcome by guilt and regret.  It is the essence of marital love.

"Love is patient, love is kind..."  So begins the great hymn to love from 1 Corinthians, chapter 13.  Again, because we knew everything and wanted to reinvent the world when we were planning our wedding, we passed on this passage thinking it clich├ęd.  Now I see that it is simplicity itself.
Love is patient, love is kind.  It is not jealous, love is not pompous, it is not inflated, it is not rude, it does not seek its own interests, it is not quick-tempered, it does not brood over injury, it does not rejoice over wrongdoing but rejoices with the truth.  It bears all things, believes all things, hopes all things, endures all things.  (1 Corinthians 13:4-7)
"Love never fails," concludes verse 8.  In sickness or in health.  That's how we recognize it as love.

May 19, 2014

Why Do Bad Things Happen to Us Good People?

I have questioned deeply, loudly, with tears and anguish and anger why bad things happen to good people.  Kids with cancer?  Wrong.  Abuse, neglect?  Wrong.  Poverty, war, injustice, hunger?  Wrong, wrong, wrong.  I have not, however, questioned why a bad thing has happened to me.

It's bad, what's happened to my muscles.  It's bad that I have a weird, rare disease.  But from the beginning I haven't much felt compelled to ask why or, worse, why me?  Why not me?

Stuff happens.  It happens to everybody.  I tell my kids frequently and whenever they take to complaining about someone else's bad or irritating behavior, that we don't know what cross another person is carrying.  But be assured that every person you meet is carrying one.

Most of our burdens are invisible.  I have had the privilege in work and ministry and life of being entrusted with many people's personal, intimate stories.  I have sat with women and men who look like they have it all and have it all together and heard from them stories that crush my heart.  I know stories of the deaths of children and of parents and of marriages.  I know stories of the theft of innocence and safety and the promise of childhood.  I have seen and heard the lies and fear and shame and rage and seemingly bottomless wells of grief.

Everyone has a burden.  Why shouldn't I?

As a Christian, I subscribe to a worldview that says that God's image is most accurately reflected by a man stripped naked, nailed to a wooden cross as a criminal, and left to die of exposure and suffocation.  That is the human suffering that stands at the center of what we can know about an infinite, mysterious God.  This God has identified Himself with human suffering completely.  Jesus says, "Whoever has seen me has seen the Father," (John 14:9).

What if it is true that it is in our darkest darkness that we, you and I, best reflect the image and likeness of God?  That is what humans were created to do, bear God's image (see Genesis 1:27).  What if when people see our suffering, they truly see the face of God?

But that isn't the whole story.  If the story of Jesus ended with the cross we wouldn't still be telling it.  Plenty of would-be Messiahs died on Roman crosses, bearing the burden of their humanity.  For Jesus, The Human, The God-Image Bearer, the weight of suffering was and is outweighed by the transforming power of Love.

Love is the source of creation...of incarnation...of the road to the cross.  We need not mistake God as the source of our suffering.  Suffering is the product of a world broken by sin, mine and yours and everybody's.  God, rather is the source of the love that invades that suffering and turns it into something completely unexpected -- joy.

I know that doesn't make any sense, but it's true all the same.  We can look on the brokenness of our bodies and souls, pried from our crosses, laid in the cold darkness of tombs, and wonder how a good God can allow such awfulness to happen to us or to happen to anyone.  But if we keep listening to the story, we see that the darkness can't keep out the light.  The stone and the seal aren't strong enough to hold, not when Love is behind the whole unfolding drama.

Joy breaks through.  Fresh air floods in.  Grave clothes are thrown off and replaced by robes of light.

In my life, as I sit in this chair, I receive daily little resurrection gifts -- a meal, a potted rose, someone to hold up my arm so I can comb my hair.  Where do they come from?  From Love.  Why do I need them?  Because I have a burden, a cross to bear.  I don't have one without the other.

May 17, 2014

A Story I Don't Really Know How to Tell

Back in December I wrote about being sick with something, something virusy -- or not -- painful, curious, concerning, unknown.  Back then I made a superstitious promise to myself that I wouldn't write any more about it, that it didn't make sense to write any more, until and unless what I had or have had a name.  But because whatever it is has continued to consume my thoughts over weeks and months, I've been resigned to writing nothing at all.

It still feels as if it would be easier if it had a name.  There are candidates:  myositis or polymyositis; fasciitis; inflammatory myopathy.  I wonder if it matters.  For now, 100 daily mg. of prednisone says it doesn't.  We've narrowed it down, started to treat it.  It.  Me.

I don't know how to talk about what's happened to my body without its feeling like a string of complaints.  Does it help if I first acknowledge that, maybe beyond reason, I don't really feel sorry for myself?  I don't wonder why this is happening.  Things, trials, struggles, happen to everyone.  This is mine.  And my family's and friends', because they have to fill in the gaps that have opened in our lives as I sit on the couch.

Maybe it's better to start with what I can do.  I can walk.  I can feel; this is a muscle problem, not a nerve problem.  I can think and type and talk.  I will live, maybe not into my 90's, but what were the odds of that anyway?

But there are many, many things that I cannot do.  I can't get in and out of bed or the car.  I can't drive.  I can swallow only with difficulty.  I can't sing the high notes, because my diaphragm is so weak.  Mostly I can't lift my legs from the hip or my arms from the shoulder.  That encompasses a lot of things I can't do.  I need help with showering and dressing and lifting a glass of water to my mouth.  I am using a walker, mostly because my weak neck makes me feel unsteady and off balance, and I do not want to risk a fall.

People who see me know this is happening.  The people who live with me know that I am a little, teeny, bit better since I started on the prednisone -- I can reach a little further, control my muscles a little better.  But I'm not stronger, not yet.  I've lost a lot of muscle mass, because my immune system decided that my muscle tissue was the enemy.  Muscle doesn't regenerate on its own or over night.

I think we imagined a different timeline, one in which I would start taking these powerful drugs and start getting better, back to normal.  Instead, as I begin to add to my network of friends others people living with muscle disease and hear their stories, I realize that this is going to be a long road; as one wise new friend frequently reminds me, this is a marathon, not a sprint, and my training has just begun.  My exercise regime, prescribed by my physical therapist, is done lying on the bed, because I can't lift my arms against gravity.  I exercise my hips by practicing rolling over in bed without help.  This could take a while.

And it, whatever it is, is chronic.  Some people recover more or less completely.  They achieve remission, on or off medication -- steroids, immunosuppressants.  So back to normal is relative.  I won't be the same.

I'm not the same.  And I am.  And I honestly don't quite know yet what that means.  The questions that have pervaded my thinking since this season began are Who am I? and Who is God?  I thought I knew.  I did.  I was wrong.  My self-image was not comprehensive enough to make sense of a me who is effectively disabled and will be for the near future.  My image of God was not big enough to encompass life with chronic inflammatory muscle disease, disability that leaves me utterly dependent on the kindness of others for my most basic needs.  But it should have been.

What I thought was that I knew us, God and me.  I was mistaken.  Without even being aware of my arrogance and ignorance, I thought I had moved beyond mystery.  I've done my emotional work.  I pray.  I got this.

Now I am plunged into deeper depths of mystery.  I have utter confidence that God will bring from this trial blessings for me and for others.  But the road is not an easy one, for me or for others.  It's a lot to process, and I've just begun.

Many people around me have been urging me to write through, so here I am, even though I still wonder if I really know what to say.  Maybe we can discover together new paths forward.  If you're game, I'll be here.  Check this space.