Thursday, January 9, 2014

Breaking

There was a time when ambition
Surpassed hindrance
When I perceived not obstacles
But hurdles
When I glibly lept without a look
Much to my husband's dismay
And either landed well
Or laughed at not
But always savored the glide

There were never so many dirty diapers
or so many sleepless nights
That vitality could not match demand
Never more meals to make
Than stamina in my arms, or in my heart
There was a time when I saw blue
Through any wool-coated sky

When at first I slammed head-long
Into Fatigue
That could not be cured with rest
Or a cup of coffee
I groaned
Rolled over
Laughed at the blue above me
And waited for it to pass


I lay and waited
And watched the wool wrap away the blue
Then saw my children's faces around me
I bid myself to stand
On clumsy feet
I prodded heavy arms
To cook, to clean, to hug
Because they needed me

I asked advice
But more often
Met misunderstanding
And decided it less painful
To stop asking

I pushed harder
Have to cook
Have to sweep
Have to bathe them
Have to shop
And waited for it to pass

And began to loathe
What I had once loved
Each necessity a test of endurance
There was nothing left
For walks
For the park
For the beach
For laughing
Nothing left
And I began to hide

I reveled in January
because less was expected
Curled into my corner
Clasped the coffee mug
That never energized
And began to believe that white
Was all the expanse above me
Had to offer


Once from where I lay
I heard a girl speak of the beach
As if it weren't exhausting
As if the extra packing
The extra cleaning
The extra carrying
Were no obstacles at all
As if her arms and legs
Obeyed without protest
As if she glibly jumped hurdles
And either landed well
Or laughed at not
But always savored the glide

And where I lay
I wept
But always smiled
Always smiled
Because weeping
Won't wash dishes
Won't cook meals
Won't buy groceries

Then in anger flew at the hurdles
And mostly landed on my back
Not laughing
Then curled back into my corner
For days
Then narrowed my eyes
Flew again
Lay flat again

Curled up again

And stayed

Thursday, January 2, 2014

A Tentative Diagnosis: Myasthenia Gravis

Last spring I wrote about how I'd been feeling unwell, about how I had my gallbladder removed, and about how I'd hoped that that had taken care of most of the problem. I wrote in May about taking more time to rest, and about feeling better. And for a while that seemed true. I wanted it to be true. I wanted with every ounce of my being to be healthy again.

But then June came. My young helper left to go overseas for the summer. I was supposed to be all healed up by June anyway. And the very first week I was slammed. The girls had swimming lessons daily, and a dentist appointment, and a doctors appointment, and I got the phone call to tell me that Naomi's kidneys were failing. And I suddenly felt very, very weak again. When I was offered the management position, it seemed the worst thing for me, and yet the best. In a way it was invigorating…for awhile anyway.

I haven't written much about my exhaustion and weakness because I don't want to sound like a whiner. I don't want to pander after pity. And mostly, I don't want people to think I'm crazy. I don't want them to talk to me about how I must be depressed (which I'm not), or just plain overwhelmed (not that either). I don't want them to tell me I haven't been spending enough time reading my Bible (while this may be true, I highly doubt it's the cause of my weakness). And I find it even more exhausting having to explain myself over and over and then defend myself from well-meaning, but unhelpful advice. I decided not to say anything very publicly unless I had a diagnosis to announce.

I wrote in June and July about my emotional struggles with Naomi's kidney failure. I wrote about the challenges and successes of managing a mobile home park. I posted some pictures, and preserved a few memories, but mostly I didn't write. I didn't write because I didn't feel inspired. I felt exhausted. I didn't feel creative, or lively, or funny, or authentic. And I didn't suppose people would like to open up my blog and read "Man, I'm tired." Day after day.

But I want to write again, and I want to be authentic. And I can't stand going any longer telling people I'm fine because I figure it will be too much work to explain my weird symptoms to them. I want to put it out there now, and then feel like I can move on and write about other things, or go to church, or go to family gatherings and not have to explain myself. So here it is.

~~~~~

I don't regret having my gallbladder removed. I don't miss it one bit and it did take care of some of the abdominal area issues I was having. I think it was a part of the problem, but probably a very small part in the end. When I go back and read again my account of When Mama Goes Down about my first little break-down in March. I realize that the fatigue and weakness that paralyzed me in March, came back in full strength about September. And then it got much worse.

The chest pains came back, then shortness of breath to the point that my breathing muscles would ache some days from straining to get enough breath. Inhalers didn't help at all. I wondered if I was breathing well while I slept, because, though I slept soundly, I woke feeling horribly achy, stiff, and tired each morning. My arms began to feel extremely heavy, like they were carrying weights. It was hard to lift my hands long enough to brush my hair, or wash dishes, or even keep them on the steering wheel to drive. It was hard to make it to the top of the stairs. And then, the most scary symptom yet, my neck began to fatigue very rapidly when I drove. After two to three minutes of driving my neck would suddenly give out on me and I would find myself trying to drive with my head leaning back on the headrest and my arms lying on my lap, one finger on the bottom of the steering wheel.

That was when I told myself, "This is nuts. People don't just lose the ability to hold their arms up, or walk up a single flight of stairs, or hold their own head up long enough to drive to the store, no matter how tired they are, or overwhelmed. This is clearly very abnormal. Somebody has got to be able to find the cause for this."

So I went back to my family doctor, who had already sent me to a cardiologist, and a hematologist, and a surgeon, and for two CT scans, and an ultrasound, and a ridiculous amount of blood tests, and who was ready at a moment's notice to prescribe antidepressants, and I begged for another referral, this time to a neurologist.

Dr. N. took me seriously and found signs of increased fatiguability in my shoulders and thighs--I wasn't able to hold my arms up against his push for more than a few seconds, or hold my leg up against gravity very long at all. He brought me back the next day for an electrical test called an EMG to check on my muscles and nerves. My nerves seemed fine, and my muscles seemed fine. Then he checked something that I didn't know existed: my neuromuscular junction. He did a test called a repetitive nerve stimulation, which showed that my muscles only responded well to the first few nerve stimulations, and then the response rapidly dropped and did not improve. This "decrement on RNS" is very close to diagnostic for a neuromuscular disease called Myasthenia Gravis.

Myasthenia Gravis is an autoimmune disease that attacks the neuromuscular junctions in many muscles but it has a preference for neck, shoulder, thigh, and breathing muscles--the exact muscles I am experiencing extreme weakness in. It classically attacks young females around my age. It can be exacerbated by overactivity and emotional stress. At this point it is a very probable diagnosis. Yet, two blood tests failed to show any of the two types of antibodies commonly associated with MG. About 10% of MG patients fail to show either antibody, these MG patients are termed "double seronegative." So it certainly isn't impossible to have MG without detectable antibodies, but it makes the diagnosis more tricky. My neurologist is not comfortable with treating me until the diagnosis is firm.

I will be heading to the only neuromuscular specialist in the midwest who could see me before April on January 17th. It is a five hour drive from home, but as my condition is getting worse, I don't think it is safe to wait until April. He will be able to perform a more specialized nerve test called a single-fiber EMG, which can definitively diagnosis Myasthenia Gravis, whether or not any antibodies are found in the blood work.

At this point, I have a hard time imagining he won't diagnose me with MG. If he doesn't I might just have to crawl in a hole and die for lack of better options. If he does diagnose me, while the disease can be very grave, it often responds well to treatments, and would actually be the first hope I've had in a long time. Medications can suppress the immune system destruction and improve the function of the neuromuscular junction. Often a surgery is done to remove the thymus gland, which lies in the center of the chest and is supposed to shrivel away to nothing by middle adulthood, but often becomes large and overactive in people with MG. It lies in exactly the spot that I have been complaining about chest pains for 9 months now, and may possibly be the root of my problems. Many people go into remission from MG several years after having their thymus glad removed.

If I am diagnosed, and can begin getting treatment, I may soon be feeling much better. If I am not diagnosed, I'm not sure what I'll do. At any rate, I am now dependent on a thick u-shaped neck pillow to hold my head up for me when I drive, and sometimes when I sit at my computer, or sit down to watch a movie with Matt. My head feels so, so heavy all the time, and my neck feels sore and fatigued and longs for relief. I finally ordered myself a neck brace this week, just so I can wear it around the house and get some relief. It may get to the point where I need to lean on a neck pillow or wear a neck brace in church, or at the store, or with friends, which is part of the reason why I'm writing this blog. I want to be able to wear it if I need it and not have people asking me if I was in a car accident or wondering if I'm just out to get attention.

I believe I have Myasthenia Gravis. I am growing increasingly weak. I can push myself to get work done if I really need to, but it exhausts me for days to come. I am not lazy. I do not like not being able to work, but I just can't right now. My house is messy because holding my arms up long enough to wash dishes, or vacuum, or carry laundry, or cook meals is very difficult right now. Last week I couldn't hold the jar of spaghetti sauce over the pot long enough to scrape it out with a rubber spatula. Having both my arms elevated at that level for more than a few seconds caused me breathing problems, and my arms just dropped. I had to call Matt in to dump the sauce in the pot for me and stir it, while I put my head down on the table and rested. I am not imagining or creating this situation. I am not exaggerating or looking for attention. A good nights rest or a few days away will not cure it. Whatever the diagnosis, I am in need of real understanding, real care, and real treatment.

So there it is. That's my story for 2013. I am hoping that 2014 includes a diagnosis and some measurable improvement. Thanks for listening to my story. If you seem me wearing my new neck brace, or leaning on a u-shaped pillow, just smile and let me know you care, or that you're praying for me. And now that that's out there I hope to be able to blog about much more exciting things: like the fact that I actually caved and bought my children a living creature for Christmas. Hannah nearly fainted. I'd love to tell you about it sometime. Maybe next time. But for tonight I need to rest.

Tuesday, November 19, 2013

Bibbitty, Bobbitty, Boo, Up the Stairs With You: A Poem by Naomi

Naomi admitted tonight that the last time we watched Cinderella, she had snuck a pencil and paper up to her bed so she could sit up and write a poem. Ultimately, it was a hard secret to keep 'cause the poem was so good she just had to share it. She's very much like her mother.


Bibbitty, Bobbitty, Boo
Up the stairs with you
Daddy hugs and kisses us good-night
And says, "After this you shouldn't fight"
In the morning the sun is shining very bright
And we get dressed, make beds, and do right

We do a puzzle, read a book,
Do computer games, and help Mommy cook
After lunch we read books some more
Then we help Mommy do a chore

Then we sit down and eat our supper
We practice manners, like please pass the butter
Mommy says, "It's clean-up time," and Toby complains
Sitting down, crying, yelling, "It's not fair," and being a pain
But, the house soon gets clean, 'cause we clean up with grins
And then this whole long poem all over again begins

-Naomi Eby, age 9


She's spot-on with our daily routine, except maybe the part about cleaning up with grins, and though it sounds somewhat agonizingly cyclical, the feeling comes through that she's happy to be part of this family and she likes expressing herself on paper. And that makes Mama happy too.

Friday, October 4, 2013

I LOVE YOU: An Acrostic Poem by Hannah

I  t is good to love


L  ittle kids love their toys

O  ver the ocean there are other people that love

V  ery many people love

E  verywhere there are people that love


Y  ou should love

O  h, but there are lots of people who do not love

U  nder us is China: people love there too


--Hannah Eby, age 7


Thursday, September 26, 2013

Ain't No Fwang

Toddler language development is such an amazing and joyful process. Elijah's linguistic capabilities have exploded since his ear tubes were placed three weeks ago. He talks non-stop now, straining to understand, repeating endlessly, proud to communicate his thoughts.

So far we've only hit one major hitch in his acquisition of the English language, and it's so fundamental I'm not sure how many months it's going to take to undo it, but for now, I'm actually getting more than my daily dose of laughs out of it.

You see, early this summer Elijah categorized swings, cars, trucks, trains, and other moving objects as, "WEEEEE!!!!" This was based on an entirely correct observation that adults often make that noise around moving objects. For months they were all "WEEEEE!!!!" which only solidified his understanding that they all shared a name.

Finally, I decided that my little boy should grow up and learn the proper names for moving objects. Taking him to the backyard, he announced "WEEEEE!!!!" and I corrected him, "No. SWING. It's called a SWING, Elijah. SWING." He stood silent a moment, considering the implications of this new information, then replied sweetly, "Fwang." I praised him for his great wisdom, and had no idea what I had started.

Later that night he picked up one of Toby's hot wheels cars and announced with authority, "FWANG!" I made the mistake of thinking this was cute, instead of immediately correcting it. Two months later no amount of correction will convince that child that cars, trucks, trains, bicycles, and airplanes are not to be called fwangs. They are now fwangs. End of story. Someone inform Mr. Webster.

The strange thing is, instead of getting tired of hearing this, my warped brain seems to find it funnier each time he says it.

When the school bus pulls up in front of our house each afternoon, Elijah announces, "Konk, Konk! FWANG!" (Watch out! Falling Fwangs!)

When his toy tractor tumbled down the entire length of our staircase he stood at the top and cried, "Uh oh! Fwang!" (I sure hate when I drop my fwang.)

When Grandma and Grandpa Johnson's visit ended he sadly watched them pull away. And daily he reminds me, "Bumpa ouside. Go bye-bye, fwang. Bye-bye, fwang." (Nothing worse than seeing the people you love disappear in a fwang.)

When Toby steals all the hot wheels cars for himself Elijah comes to me crying, "Toby! FWAAAAANG!" (To which I respond, "Toby, give your brother back his fwang. We don't steal fwangs in this house.)

When I carry him to his crib, he will reach desperately for any object with wheels anywhere in his sight and beg, "Fwang!" (Sure kid, have your fwang. Have any fwang you want in your crib. There's no rule against napping with fwangs.)

When Elijah wants to get out of the house he lures me with, "Come on, Mama. Fwang!" (I haven't had the heart to tell him that fwangs aren't really my thing.)

And then there was today when he asked for a turn on Toby's fwang (formerly known as a scooter) and I cracked myself up by correcting him with, "That ain't no fwang!"

Sometimes you need to stop fighting it. You need to laugh at it. A fwang is a fwang, and a fwang by any other name would never sound as sweet.

A Moment on the Pine-Wrapped Hill

One night on a pine-wrapped hill
Above the rocks, above the sea
You played what your heart overflowed
To say good-bye, you played for me

I held that tune a thousand miles
And loathed the distance, loathed the time
And wished to heaven it were now
When I could wrap your hand in mine

Now gazing back eleven years
I cannot see a sweeter place
Untouched by complicated tears
Unworn by this life's urgent pace

Tonight with dishes in the sink
With laundry strewn about the floor
With small feet sneaking for a drink
With clouds of duty on my soul

I almost didn't hear you play
I almost didn't hear you feel
'Till I saw your heart overflow
And watched the thoughts your fingers tell

Then saw the business fade to mist
And felt the notes shake through my bones
To call me out of all of this
Above the steady drone of chores

Above the rocks, above the sea
Onto a pine-wrapped hill
Where once you played to feel the pain
And now I see you play there still

One night in a pine-wrapped house
Below the moon, below our dreams
You played what your heart overflowed
Orange sun slipping through the trees

Notes that flowed with strength and hope
Contentment in the drudgery
A moment on the pine-wrapped hill
You play to feel, you play to be

Friday, September 20, 2013

Managing

Three months ago I received a phone call that completely reshaped our summer, and our lives. We had been waiting for Matt to receive an overdue promotion, waiting to be able to buy a home to live in, and waiting to feel settled somewhere where we could raise this family--the sort of feeling that doesn't come when you're in a rental home that is managed by people you don't trust. We pushed on doors that wouldn't open, and God kept us here, living in an old farm house in the center of our town's yuckiest mobile home park.

It wouldn't have been a half-bad place to live if the management had cared at all about keeping the place up: if the grass was mowed and the buildings were painted and the roads were repaired, and if I had a chance to get to know more of my neighbors. But the owners of the park lived three states away and were apparently unaware that the current management company was letting the park go to pot and laughing all the way to the bank. Our neighbors seemed nice enough, but spoke mostly spanish. My spanish was rusty at best, and I lacked the motivation to bake 40 batches of cookies in order to knock on my neighbor's doors and smile awkwardly at each other.

Our "backyard" was the common area for the whole trailer park and consisted of knee-high grass gone to seed covering litter of every dangerous variety possible: pop cans, food wrappers, and broken beer bottles so filled the yard that the lawn care company refused to mow--not that anyone cared. A twenty-year-old "swing set" sat in the middle of this jungle, just daring my children to wish for a normal childhood. On occasion I would let them put on some thick-soled shoes and venture out back, under my close supervision, but mostly we stayed inside, where I knew they were safe. Outside was out of my control, and so we waited to move. And we wondered why God kept us here.

I pushed harder on doors, determined to get us out of here. I thought maybe if I could get some extra income from home (if any actual work-at home opportunities existed that weren't total scams) we could get a loan for a half-way decent home. I toyed with the idea of working away from home one or two days a week and leaving the kids with my in-laws. We met with a counselor at a non-profit agency in town to see if their programs could help us get a house. And we were blocked at every turn. God kept us here.

On June 18th Matt informed me that some person with an out-of-state area code and a name he didn't recognize had tried calling twice, but he wasn't going to waste his time answering it. "You never know what they want unless you answer it," I reminded him, "it might be something important."

"What are the odds of that?" he retorted.

What are the odds?

That evening that same persistent person called again, and I opted to answer, against Matt's better judgement.

"Hi, is this Katherine?" he asked.

"Yes," I answered tentatively. (Not sure I really want to tell you that, strange man on the phone).

"And you live in the house at the Skyview Park, right?" he pressed.

"...Um...yes..." (Really not sure I should be giving that info out to you either, creepy man.)

"OK, well, I'm calling because I'm the owner of that park, and I'm actually wondering if you would like to manage the park for me."

Here is where my jaw hit the floor, and my brain malfunctioned from the impact:

"What in the world?!"
"Who calls people up that they've never ever met before and offers them a job out of the blue?"
"Wouldn't this be a great opportunity?"
"Can I handle all that?"
"But we were wanting to move..."
"But maybe we wouldn't have to move anymore."
"A real work-at-home opportunity?"
"No. There is no way I can handle any more stress right now..."
"But...maybe...maybe we could actually save some money. Maybe I could clean this place up and develop a good relationship with the owners and get to know my neighbors. Maybe I could like living here. Maybe this is why we're here."

And so, after my power of speech returned, we talked about it, and the more we talked, the more I realized God's unmistakeable leading in our lives, and the more excited I was at the possibility of being the new manager of Skyview. The owner revealed some of the details of the failings of the previous management and that he had offered me the job because I lived onsite, which he was realizing was essential to actually keeping an eye on the place, and because I had taken so much pleasure in fixing up this house when we moved in. He was hoping I would put some of that same energy into fixing up his park. I talked with Matt and with my parents, who all confirmed that this opportunity seemed well matched to my gifts and that it would alleviate enough stress on us to more than make up for the added stress of the position. Later that evening I called the owner back and accepted.

Why did I wait three months to blog about this? Well, first of all, I have been a whole new kind of busy for the past three months, and second, I wanted to wait a couple of months before happily announcing my miracle position just to make sure I could live through it. Three months after that phone call, I can still say that I am happy to be the manager of Skyview.

I spent the first several weeks getting bids and haggling with paving companies over fixing our pot-hole -laden roads, even before my official position began on August 1st, so that residents could sit on their front porches and watch with smiles on their faces as the pavers came through just nine days after I took over.



I put on gloves and picked up every scrap of trash covering the common area behind my house--bagfuls  of trash and glass. I dug the riding lawn mower out of the barn and from under a quarter-inch of dust, sent it off for a tune-up, and lined up a resident to mow once a week. I knocked on 40 front doors and introduced myself to the residents, in English and Spanish. I walked the park with the state health inspector, then spent a day handing out notices of health-code violations, and park rule violations. I organized a pool for residents to chip in to buy a dumpster and haul out the enormous amount of large trash items that had accumulated on most of the lots. I hauled wheel-barrow loads of yard debris and trash. I even climbed into the dumpster to make more room when it was full.

I bought bags of crushed lime and dumped them on a septic system leak, then called a crew out for repairs. I showed my neighbors what weeds were and how to pull them out. I poisoned poison ivy. I planted plants around my house. I talked the tree-trimmers in our neighborhood into giving us an entire truck-load of mulch for free. My brother and his family came one day and helped us put up a new swing set and distribute the mulch under the swing set and around my house. My dad came with his power saw and helped trim all the neglected and overgrown bushes. I got some of the teens who had been prone to vandalism involved in the clean-up work, and they learned that work can be fun and rewarding.




When the state inspector returned to check on my progress he walked the park grinning and repeating, "Wow! This is fantastic!" And I felt exhausted, but fulfilled.

I have been busy developing spreadsheets, collecting rent, documenting expenses, and communicating with the owners. I have had some unpleasant confrontations, lots of interruptions to my routine, and a few too many emergency calls, but overall, I have enjoyed the challenge.

I have enjoyed getting to know my neighbors, most of whom are a delight to be around, even if we're just smiling awkwardly at each other for lack of other intelligible communication. But most of all I have enjoyed turning my kids loose in a backyard that is a clean and safe place for them to exercise, make friends, and learn some serious soccer skills from the neighbors.


A local church donated soccer goals for us, and even Matt has enjoyed getting out for the nightly game of soccer with the neighbors that is available almost every evening now. Where else can you have the pleasure of an enormous block-party in your backyard every night?

One of my neighbors recently said to me, "You work hard. Very hard. Before no one was here. No one cared. But you fix the roads and clean the park. You do a good job."

Yes, I am tired. And some days I feel the stress. But there is enormous reward in this work. I have picked up homeschooling my kids at the same time now, and (knock on wood) I think I can do this all. Maybe I have been given supernatural help. It seems there was a reason he wanted us here.


"He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me.

Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me."
--Joseph H. Gilmore