Friday, January 23, 2015

Good Mourning, Unapproachable Light

The intense sun beasts through our corner window in our main living space this morning.  It is freezing outside, but the hot sun is grabbing my attention to each outside element. Inside it reflects off the little 1/4 size viola. 

We let our nanny go this morning.  Objectively, good.  For our family, good. As a mom, tricky with a side of mourning, but appropriate. I'm grateful I am able talk now after a half-silent winter and think straight about these things!  As the nanny saw me getting stronger, my role switched from a "mam" to an enabling mother of a college student home on spring break.  The college student who does not know what she does not know.  I will pray for her future that she finds places to exercise her gifts and excel, and that she makes her family proud. One month and two days of her work was a good amount of time for me to understand what she can do.  It only took my Oma an hour. What I'd give for that kind of wisdom!

I have been praying for God to keep this door open or close it, with our nanny.  It was clearly closing throughout the week and we just had to shut it this morning. I was encouraged by Ben Kreps' sermon last week, reminding us that even positions of authority or servanthood, thrones and dominions, both human and spiritual are under the headship of God. Psalm 2:1-2. This is reassuring when setting up any infrastructure, with headship and subbordinate-ship, hiring and firing people, and allows us to remove our emotion from the objective decisions. 

According to my sermon notes, as God healed the rift between God and Man, we can trust Him that He is the superior creator, reconciler, and peace bringer.  These truths really assist a peace that transcends understanding when you are going through confrontational or less than desirable circumstances.

Very excited for what's on the horizon.

The King of kings and Lord of lords, who alone has immortality, who dwells in unapproachable light, whom no one has ever seen or can see. To him be honor and eternal dominion. Amen. 
1 Timothy 6:15-16 ESV

Link to Sermon References 

Monday, January 19, 2015

Suddenly Cellcept

Thankfully we were all home today.  Kids making fun and messes, music and laughter. Mike is home from work and plenty of down time.  As he just now left to pick up our nanny for the week, I will recount the events.

I am talking more these days, and able to flood into full dissertations to the children, rationalizing and explaining everything I can get my thoughts on.  Then blurting them out in some overbearing way.  Not quite the parent I had hoped to be.  I was convicted when I came across this page from a favorite parenting book, How to Talk so your Children will Listen & Listen so your Children will Talk by Adele Faber and Elaine Mazlish.  Page 12 & 13.  Basically, I was the mom on page 12 today and one day I want to be the mom on page 13.

Instead of "Questions and Advice,"

acknowledge with a word, "Ohh, mmmmm, I see . . ."images

After that sad little jaunt, I decided to make stuffed cabbage today.  Clean and healthy eating, cancer avoiding cabbage rolled along the lines of a delicious grape leaf recipe. After tending to the entertainment cabinet in the playroom, organizing and dusting the wires, listening to excerpts from Civil War the Musical and Little Shop of Horrors, I made my way to the kitchen while Mike and the kids tackled the wooden marble run.  They were making roller coasters for the little spheres to ride on.  Once my request for "Suddenly Seymore" came on Spotify, Mike brought the Bose speaker into the kitchen for me to hear as I was cooking. Steaming cabbage leaves and rolling them up, I then wanted to listen to "Astonishing" from Little Women. I slowly started muttering a few lines along with Sutton Foster, and just joined her in the belt, the kind of controlled yelling that many of current broadway singers accomplish. Well wouldn't you know, I made it through. Not quite the finale, but definitely through the bridge and some of the parts that I haven't sung in a very long time.  It was very exciting for me. Rinsing my hands of the meat and getting the rice out of my nails, the warm water welcomed me back into singing, a huge part of my life.

I went out for a bit, going to a few stores before the gym.  Since I am on high dose prednisone,  for about 3 months, I have scheduled the gym for multiple times a week, and trying to stay ahead of the weight gain and weakness. During my errands, my doctor's nurse called me back.  We have sought counsel from many many people, both medical, natural, family, friends, praying for wisdom, and 6 rounds of teaching hospital physicians over 2 hospital stays since last October.  I basically had to tell the nurse, I choose Dr. Ahmed, and ask, when do I begin Cellcept?  As I moved through the still-over-priced-going-out-of-business furniture store, she started to discuss more in depth some of the protocols.  Timing of blood tests, supplements to take, etc. I needed to wait for another call of when to start the Cellcept. I made it to the gym, and just as my warm-up was complete, I got another call that the perscription was called in and I begin today.

I knew that. I figured I begin today.  I also know it is the right decision.  Even so, I still went through a mental gymnastics competition to actually buy the pills, muddle my way through the warnings and side effects, and actually set the timer on when to begin.  On my 2nd trip to the pharmacy, I bought the prescription and a peace lily. Thankfully David was dismantling the sun glass rack and Naomi was trying to help control him without bashing the kid version of a shopping cart into the display counter, so I was totally distracted in the moment of purchasing and just bought the stuff without over thinking. 

Perfect play-in to Idina's first solo, "What If?"  in If/Then, A New Musical. Over thinking decisions, hindsight. Not right but a very real wrestle.

The drama didn't end as I read through the package inserts throughout the evening and basically started to despair at the decision that I know is right.  Thank goodness for Mike, drawing me into the idea that I can speak now and I'm starting to get my life back.  I sang today, I am no longer just walking into a room  wondering if I can swallow or talk, or make it through the afternoon.  He reminded me of the benefits of medicine, that the risk of not taking this far outweighs the risk of taking it, and he's not just going to sit by and let "your humanity go down without a fight. You've got a lot of life left to live, and we are going to fight for you."  Spoken like a true angel husband.  Suddenly, my Seymore drew me out of the heavy thought, and back into the hope that this can help.

Tuesday, January 13, 2015

Go Ahead, Take Over

Humming a little tune is so refreshing.  For the past few months would save my voice for Mike to come home, or to explain something pertinent to the children, and well up with frustration that it fell on deaf ears, or even worse, that they could not understand me.  I have spoken over the past few months like I have a lasso around my tongue, a marshmallow stuck to the roof of my mouth, or talking through a muzzle. Such is the way the Myasthenia Gravis flareup has been, but thankfully I have a voice whether I have a voice or not. And I have been able to hum a tune and talk the past few weeks which has felt amazing.

I'm slowly starting to shift my glance to dread of medicine to gratefulness for medicine.  Don't we all need to be held up by something anyway, and what's wrong with a few tools, discoveries, and tries to get a fully-lived life back?  I'm shifting my gaze from doing millions of things for others and moving to the me, myself and I. A day does not go by that I don't want to connect a few people, amazon about 20 presents to people, or invite friends over to visit.  As I handed ideas over this week, they took flight in the hands of others who were passionate, and it felt very good.  This summer, I was instrumental in starting an upper school orchestra at the kids school, and that was just about as my illness started to take a life-consuming turn.  Peace filled my heart as Jesse called me last week and said that a current teacher at the school will be taking over the program.  He said it with such a kindness, hoping this would alleviate a burden on me and was sensitive that I may be upset at letting the program go.  My response inside and out was that I am more happy that the children will have consistency than I am disappointed that I cannot teach the class. Isn't that what teaching is about, consistency, giving students methods and tools to find their own role in the world.  I'm so relieved.  Another handful of ideas were handed over to the hands of people excited about them, and such is the visionary role I always hoped to have. 

It amazes me that I have slowed down enough, hired enough help, had droves of love and support from family and friends to be able to stop and realize that my favorite thing is being a visionary.  I haven't researched the title, but probably will.  Not the dooer, the grunt-worker, but my excellence is in the connection of ideas and concepts to push forward a vision and hand it over to other leaders who can make it their own. 

My memory was jogged back to my student teaching experience, as one of my former students just began this week.  The best thing my lead teacher said was, "Make this program your own." Floundering through rehearsals, lessons with some punk kid puffing on his saxophone for the 7th week in a row while I'm trying to talk, the other teachers left me in charge.  In the room alone with the kids lessons, teaching and teaching, floundering and teaching.  Then, the glorious day after 7 weeks that I looked the punk in the eye and firmly, and loudly (which is a challenge for me with other people's children), said, "Don't play while I'm speaking." Three of the music teachers in my sight-line must have heard me through the office glass and gave fist pumps to the air like I just rocked a concert hall. There it was.  They were trying to get me to raise my voice for 7 weeks in these abstract ways, and its not until you have a leadership role of your own where you really learn and have platform to excel.

Mike learned this in residency.  Once he was a SAR, he would hover over the interns and JARS, only to realize the feedback when he finally let them go and run their own patients and report, was that they gained confidence and leadership, and valued the experience, failures and all. I believe those guys and gals are better doctors now because of his teaching and giving them a leadership platform to excel on.

How are we supposed to build up each other if we are throwing down ideas and driving them at the same time.  How shall we be good counselors if we are offended that the receiver doesn't take our counsel? How can we be good leaders if we are not raising leaders to take our places and become better than our own self?

We can't.  You raise the bird and let it fly.  You work on ablating the heart and leave the beating and rhythms in the hands of God.  You pick the medicine to take with the least side effects and the most hope.  And you tell someone your idea and let them run. Without a patent or a harness.

My favorite part of my gym is that my personal trainers train like I used to teach musical theater and orchestra.  Kids, this is your show.  Learn it better than me. Do it better than I ever could.  Add in your own spins when you know it well enough and it will be fun. It is yours. Kids will blow your expectations away and run with newer and fresher ideas. Reign them in when they get crazy and you have a great show.

Fitness class, this is your body, you can do this.  You didn't want to get out of bed at 5 this morning, but you are here!  Come on, you can do this, need more weight? Is that challenging enough for you?

All the confidence in the world won't discount the blessed controller of all things.  Even if I let everything fall into other hands of leadership, I would have faith to say that God is still, in his perfect and wonderful plan, allowing things to happen. 

A helpful book on the topic of God's leadership in our many works is Calm my Anxious Heart by Linda Dillow (link to Amazon).

Friday, January 9, 2015


Truly, we are not here alone, on this earth which is fallen with much sin and sadness.  But it must cross minds across the world as the nights plays on, as trials ensue, as people march on with their own lives in sought after independence, either intentionally or unintentionally hurting people and relationships along the way. 

I was always intrigued with a song from the musical, Little Women, called "Here Alone." The character is Marmee, mother of four, sitting down to write a letter back to her husband at war.  

Mindi Dickstein wrote these words for Marmee to sing, she begins, "My dear husband. . .  

Write a letter, be inventive
Tell you everything is fine.
Be attentive to the distance
Send my love with every line
Every word should bring you closer and
Caress you with it's tone.
Nothing should remind you
That I am here alone
I can't tell you what I'm feeling.
I can't talk about the war
How the peeling of the church bells
Brings the battle to our door
I don't know which part is harder
What I know or what's unknown
Or raising little women
when I am here alone
Counting days, Praying for news
Is this the life
We meant to choose?...
Do you know how much I miss you
At this hour of the day?
How I wish you were the twilight
Come to take my fears away
Can I manage four young women?
I'm not certain I know how
Will I be there when they need me?
Or do I fail them here and now?
I wish that you were with me
Wish that I could bring you home
The nights seem so much longer
Now that I am here alone.

I always admired the character for being so selfless and thoughtful, laying down her own trials to build up her husband, in an actual war. Across the world there are actual wars and the news is filled with snapshots of people being killed and oppressed, people fighting for their lives.  I see through those windows but have not experienced what war is like in a physical sense.  I think everyone, though, having experienced physical war or not, has experienced the wrestle, the inner war of the mind.  I believe it's the reason celebrities go bad, money corrupts, and relationships crumble.    

There is something I find interesting about the performances of "Here Alone," in particular.  As we have the luxury of YouTube, I started watching some videos of performances of it, from the amateur high school student to the national tour production.  I'll post a few videos below, but it struck me that more seasoned and mature the actor was, the more bitter and envious the Marmee was.  As the youth fled from the faces of the actresses, the sweet protection to not-burden-the-husband-at-war fled and developed into expressions of self pity and anger at him for leaving her "alone." 

Is this what life has become for married people?  We see plenty of it.  I know plenty of bitter young, old, and middle aged women who tear down their husband's character at a drop of a hat.  But I also know plenty of women, young and old, who stand as examples of a godly marriage.  Seeming to never tire of building up their husbands openly.  I am sure they still wrestle with thoughts, it would be un-human to not wrestle with negativism and bitterness.  But it is possible to not let it overcome one's self and fall into the forbidden, "well, this is just who I am." 

Mike and I have been married for about 11 years. We took a vacation last summer for our 10-year anniversary and had more fun than on our honeymoon.  The most encouraging part is that we met couples on their 25th, 35th, and 60th anniversary trips, and the consensus was that "the 35th is even better than the 10th!" and so on.  It is a story we do not hear often enough.  Grab a book on romance, and the scandal, affair, and backstabbing draws in your adrenaline.  I am not well read enough to even recommend exciting books about good marriages, but maybe one day some will come my way. I am talking about candid accounts of the day to day life of people living out godly marriages with the same depth of love that we have already lived out, which can only be the beginning of the richness and decadence to a fantastically designed relationship, meant to reflect the relationship of the God of the universe with mankind.  

I'll have to grab the new Francine Rivers book and see what she's writing these days.

So in these days of texting and grabbing each others attention multiple times a day, I crave those days of thoughtful communication, the letter writing days.  I got really good at thoughtful communication during residency.  Mike and I would need to talk about something, and I would put the issue on pause.  After a 36 hour shift, then a buffer day to work through or sleep it off, we could sometimes go until Friday discussing Monday's issue. I learned what was really important to bring up and what wasn't helpful in the time allowed.  I learned how to best serve Mike when he was overtired or his brain needed a respite.  I was not perfect by any means, and it came with a lot of trial and error, and prayer and counsel.  

To see the progression of bitterness settling in on a married life or age, you only need to see the first 30 seconds of each video.  I pray that in our real lives, the progression would be reversed. On account of the heaviness of wars in the world and in our minds, that we would be able to grow in tenderness and love towards people and not into a bitter facade of a common American expression, "I'm fine."

 Very soft and kind.  Gentle and loving.

Starts to get a bit bitter, softens a little 

Excellent acting.  Sarcasm.  What is her heart really saying?


The beginning of strife is like letting out water, so quit before the quarrel breaks out. Prov 17:14

A tranquil heart gives life to the flesh, but envy makes the bones rot. Prov 14:30

It is an honor for a man to keep aloof from strife, but every fool will be quarreling. Prov 20:3  

Wednesday, December 31, 2014

Let your Heart be Light

Hugh Martin's penned phrase rang across the Cocoa Beanery, pulling me out of my funk a few weeks ago. It was a week before Christmas, and all our most loved wanted "for Christmas," when asked, was for me to be healthy and able to speak again.  The kindest answer anyone could give.  It felt heavy at first, but I knew it was the kindest request.  Hoping that prayers are answered to have this present ready for Christmas, I continued to dread staring down my mental list of all that I should do before Christmas to make it special. The wrestle is, if my heart would be light, I should erase the mental list, do nothing for anybody, and just be.   It seemed like the most selfish but necessary spot to be in.

Although, the selfish idea is not appropriate at this point.  Like if a baby is crying and the mother needs to eat. It would do more harm for the mother to feel selfish and not eat than it would to let the baby cry for a minute and have at least a few bites before going to pick up the child. The worst response would be to not eat, get agitated that as a mother you have not time to eat, and live in a constant state of re-action for the things that need to get done. How can there be a light heart in that situation?

When my mind spins on about an idea, it is how to make that idea the most spectacular anyone has ever heard of.   I cannot settle on the Christmas cards that came.  I had the picture taken with the best camera on the market, they came out fuzzy, and all 200 cards were not stamped or sent before Christmas.  Go figure.  For the first time in a month, yesterday I was able to do the grocery shopping and a few errands without getting worn out, so another trip to Staples to have them reprinted is out of the question. Now, I want to do a year-in-review, with a picture of Naomi and David reaching their target height at Hershey Park, my little Reeses' and Hershey bar beaming with excitement in the picture from David's 4th birthday.  So today, does a light heart just send out the 200 Christmas cards, bury them in the basement and send nothing, or work for hours on a year-in-review, wait days to have it printed, and during appointments next week, frantically fill out and stamp?

The most hilarious part of all of this, is that my disease gets worse with stress.  Myasthenia Gravis increases the production of the antibody attacking my system as my stress level increases.  So the wrestle I work mostly with, is taking my visionary and fantastic ideas, try to not be stressed that I cannot accomplish or do them, and run with whatever I've got, being still in the moments.  I've heard a million times that the Lord's "yolk is easy and His burden is light." I know what it feels like to have a huge weight on my heart lifted off and feel "the peace that transcend's understanding guard my heart in Christ Jesus." It is truly a glorious place to be in. It is unexplainable, and even when the most cunning dart is flown into our little family, the peace is still there in a profound way. 

After the "Merry Little Christmas" phrase jogged me away from a thought pattern of disruption, the walk to the car led me right back to it.  The calendars are only done for one side of the family, the presents are not organized and I have to buy new clothes because something is contaminating me when I wear clothes from home.  Is it mold? Is it an air quality issue?  Should we move out? I have 3 hours before I have to be somewhere.  I sit in the car.  Where do I go? Will I even be able to see the family for Christmas or end up back in the hospital?

A perfect bald eagle flies straight over the car.  

The bird of the United States of America.  The bird from the song I grew up with, "He will raise you up on eagle's wings, bear you on the break of dawn." The bird from the scripture I have memorized about eagles, "who satisfies you with good,so that your youth is renewed like the eagle's," from the richly worded Psalm 103.  I will have to lace into a study on Eagles at some point. 

So today, Dec 31, 2014.  I look back at the Christmas break.  For the first time in 5 years, Mike had time off to travel and visit family with us.  I was unable to talk much of the time, but I was able to listen.  I listened.  I listened.  I listened to family I haven't listened to in years, maybe never, and I was quick to listen because I could barely speak, but I know full well that we are called to be "quick to listen and slow to speak." We baked cookies at my sister Nora's house, she and Amanda coordinated with Santa to have presents wrapped in special paper and had him sign each one in fancy letters. Amanda and Jim were the air traffic controllers for the midnight sleigh that flooded presents into my parent's house.  My parent's welcomed our new nanny and nurse, Miss Sherpa, with open hearts, probably her first experience with any american Christmas. Michael led our family in prayers in the car and the children in paths of righteousness. We attended Christmas Eve service at the church I grew up in and the youth acted out the gospel in perfect pageant style, possibly the first time for Miss Sherpa to see. I started taking prednisone and did not get worse enough to be in the hospital. I learned to speak in 2 or 3 words when my heart wanted to say 20. Christmas morning, the sparkle of light burst in the kids eyes as they found the eaten cheese cake and snowflake with Santa's note on it. We were there for Samaha brunch and all the fix-ins, biscuits and made-to-order eggs. The sjoelbak was brought up from the basement and the sjoel schijven smacked around for the rest of the afternoon and evening. As roast turkey filled the air we bustled to get dinner on the table. Well, they made me sit and be served and I felt a lighter heart to do so knowing Miss Sherpa was helping.  Quiet Chritmas dinner with the five of us, my parents and Amanda, and Jimmy came for dessert and scotch.  We did a full pack-up the next morning to head for Connecticut for VanWaalwijk Christmas.  Oma was elated to have her original 5 children in one home for a day.  I have never listened so much.  I felt like I should have a pair of knitting needles, and the thought jolted Mike, where he saw the next 50 years robbed of me as I sat with Oma, looking sickly and doing nothing.  But air clears when you are around people who love and support you, and he quickly spoke truth to himself and to me, grateful for much.  

We had a whirlwind stay at a hotel in Newtown with a jumbled breakfast of too many choices.  I had a few good cries but grateful we finished with smiles and loving sisters and brothers parting ways for a handful of weeks.  We made our way south to North Haledon, to Mike's parent's house, to have Christmas with the Links.  The kids were elated to open their beautiful sleeping bags and David's 50 car set.   The TV rolled in the background as laughter and whoops filled the air.  Dad took us to the wildlife center, and the kids darted from animal to animal without a second to take in the moments. Mike and I took a ride to St. Joseph's Wayne General Hospital and visited Grandpa Link.  The afternoon visit his only tangible thought was that he wanted some asparagus casserole.  All other thoughts, he spoke of Heaven and being in glory with Jesus. The evening visit, he did not eat right away, after the 6th offer, and bringing the delicious homemade food to his mouth, did he begin to eat.  About 20 bites later he finished.  "Taste like a real dutch holiday," he said. As we ended our time together, I prayed but God led me to say the Our Father, which I knew Katie and Steve both knew.  Once Steve and Katie chimed in, my voice went out completely.  It was a perfect moment to hear the most adorable couple in the world praying for Grandpa. He said, "there is nothing that makes me happier." 

Sunday morning we went to the church Mike grew up in, and had a wonderful service.  The kids went to the montessori sunday school class and Mike and I went up for healing prayer after with long friends of the Links.  Memories of cadets, flashbacks of his youth filled Mike, and he was touched. The kids bounced around the fellowship hall as we sipped coffee and Mike and Steve spoke with church members they had not seen in many years.  Miss Sherpa went back to NYC Sunday night and we finished our time at the Links with Naomi's tooth falling out and lasagna dinner.  One final visit to the hospital awarded music and hymn singing to the senior care ward. In the middle of random stories, clear as day, Grandpa Link said, "you never forget music."  He asked for specific hymns and remembered every word.  I'm just sorry we did not bring him some home made lasagna, because his dinner plate was sitting there, untouched.  But, if I am really fighting for my heart to be light, he made it out of the hospital yesterday back to the Holland Home, so this is what we can focus on. Despite our best vision of excellence and servitude, God will turn any evil or missed opportunity and make it good.

On the way home, we stopped at Nutritionworks in Womelsdorf, PA and all had ionic foot cleanses.  Noami had an appointment with Nutritionist Nurse Trista Grey, and they all had a hair analysis taken. My hair analysis from the prior month showed toxic levels of aluminum in my body at the same time that we discovered that the aluminum rod in our hot water heater disintegrated.  So we have been bathing, washing dishes and clothes in contaminated water.  Grateful for Reuben Martin of Martin's plumbing who installed a tankless water-heater while we were away and Jessica Fair of FairHaven Interiors who transformed our guest room into a mini-apartment for Miss Sherpa. Miss Sherpa reunited with us last night after I had an afternoon of errands and together with Mike we had Aunt Kathy's chili. Mike and David polished off the evening with the first viewing of Star Wars, and David is still sleeping off the late night. 

So, on with the day.  Let your heart be light.  As I increase staff in our home, a common layman response is, "well that must be nice, have a housekeeper, a cleaning team, a landscaper. . ." The list can go on. But if our heart is truly light we can agree that the necessity of the situations lie in the household of the beholder.  A doctor's wife goes it a lone, much of the time. If someone's dying form a heart problem, Mike being there for dinner one night isn't really that important. In order to make meaningful family time, it takes a village.  It takes a staff, and we are exceedingly grateful for the family, friends, and staff who supported us this year. Wether in prayer or in deed, thank you. 

Wednesday, December 17, 2014

Who Knows

Well, I end up in obscure places and wonder what's going on.  On line at the cocoa beanery, I have my attention drawn to a man who is waving a book at me.  "I wrote this book, do you read poetry? I wrote this book and sold 600 copies. Here, read this." I'm not in the middle of a city, I'm in Hershey at a relatively yuppy coffee shop.  So I read.  Touching.  Heartwarming. " Very nice," I explain.  I glanced at his bio on the back page and made my way to the line.  (A cornell graduate? Is he retired? Is he okay?) Ordered a salad and cinnamon infused tea. Sat down.

It has been a wacky week.  Over all it started well, with good physical signs.  I could talk and eat the majority of the day.  Then the craziness of a labored swallow and the need to drink extra water kicked in about Monday, okay a bit at Saturday brunch.   I guess that is the beginning of the week.  After a morning and afternoon of a few conversations, the last few evenings were terrible.  I limited eating and barely talked during dinner.  One word sentences, some of which sounded like I was holding my nose, and an occasional barely intelligible word. 

So I have an ENT appointment on Friday and a call in to my neurologist.  A few 2nd opinions for the beginning of the new year.  I have lab work going to teat for a new-found antibody for Myasthenia Gravis. 

Praying it all goes away or that I have a heading and an altitude soon.  A consistent one.  I can see why a blogging friend entitled her blog "Living with Chronic Illness: The Roller Coaster of MG."  I don't even like roller coasters anymore.

As I type I am encouraged by the song overhead:

Joyful all ye nations rise
Join the triumph of the skies.
With angelic host proclaim
Christ is born in Bethlehem. 

Seems so far away now but I know it is true.

Christmas will come whether we are ready or not.  Aunt Donna in Texas just shared the with me.  Good one.

Friday, December 12, 2014

The Whole Story since October

I am generally a good communicator, but when it comes to describing a medical condition or giving an update about myself, I find myself floundering.  Put me in a doctor's office and forget it.  Flounder flounder.  Here's an attempt to document the past few months.

Back in October I had plasmapheresis treatments done in the hospital, and I responded well to the treatments.  I was talking, eating, and even singing well during the time in the hospital and for a few weeks after. My health started to decline enough to call again two weeks after being discharged, so I needed 5 more treatments through the month of November.  Mike was noticing that since I was home from the hospital, I am frequently clearing my throat and sound congested.  Each time I was congested in the throat, my talking and swallowing got worse.  This was the beginning of the puzzle, like finding the corners. 

At the neurologist appointment back in November, I was stammering over describing wether I could swallow every meal, just the beginning of meals, the end of meals, the end of the day, or the beginning of the day.  It was a random and jumbled story, and my neurologist thought I was downplaying my symptoms.  I may have been, since I like to sugar coat the truth, but there was something about what I was describing to her that didn't make sense.  The edges of this puzzle were not showing the shape of Myasthenia Gravis.

She had me do the standard breathing test.  Okay, take a deep breath in and exhale counting quickly.  October's test I only counted up to about 20, which landed me a 9 day hospital stay, but at this appointment I got up to 42 when she stopped me and explained how excellent it was.  She told me that she was perplexed because difficulty swallowing and breathing, with Myasthenia Gravis, go hand in hand.  Also, my face was blotchy and eye lids were puffy.  My neuro said, "This may be an allergy," so the plan was to see how I do over Thanksgiving break while away from our house and give a report when I return.  If I'm not better, I will go on a prescription regimen that I will be on very long term.  I could not listen to the side effects and risks again, having already heard and read what they were.  Not a good idea for a visionary, like myself. 

Well, Thanksgiving had past, and we had a wonderful time seeing our family.  We actually saw every immediate family member, all grandparents, and some extended family.  I was not swallowing well, probably a 6 out of 10 (10 being perfect swallowing) during the 5-day holiday, and tried to hold back exciting facial expressions, knowing it would exhaust me and I may not be able to eat the nostalgic holiday food.  We got home late Sunday of Thanksgiving, and Monday was a tolerable day, swallowing around a 3 out of 10.  By Tuesday evening I could not eat at all, and could have a few drinks and bites on Wednesday.  By Wednesday evening, I knew what I was headed for.  The big drugs.  Another hospital stay.  I called the doctor on Thursday. "Go to the hospital tomorrow morning, early."

I did everything I could to brace myself, but this time I was just upset and scared. I had a heavy weight on my mind and could not focus on anything. Not so much that I would have to clear out the schedule and get back in the hospital, but for the drugs on the back end of the hospital visit.  The plan was to start IVIg treatments Friday, and once stabilized I should  decide if I want to take Cellcept or Imnuran, which takes 6 months or so to begin working, so in the meantime, go on high dose prednisone until results happen from the first two drugs, to then have hope of remission.  Phew.  I was not havin it. I wanted to trust the protocol and the insight of my doctors but for some reason didn't. 

I was admitted to the hospital Friday, and somehow the air started to lift.  I knew family and friends were praying and a peace that surpasses understanding was guarding my heart, I was asking and asking anyway.  Just after I was filled with peace, my neurologist called my hospital room. "Joanne you sound good, and you have not even had any treatment yet.  This must be an allergy and you have to move out of your house.  So, I'm not going to start you on the prednisone and cellcept until we figure out if this is an allergy or not. I am now taking my neurologist hat off and putting on a detective hat!" We had a good laugh on the phone. I'm thinking . . .Oh geez, move out of the house? Let's dosey doe with a bit more this week.  Give us a few more issues to handle!

That evening, they pre-medicated me for the IVIg with benadryl.  After the trippy feeling of iv benadryl, I felt immediately better. I ate my entire dinner.  My voice cleared up, I was talking and eating, and called like 3 people. The excitement was all over as family buzzed the message along.

The rest of the hospital stay was fun.  I interceded for a lady on the ward who was hallucinating, shouting out many stories and commands.  After a few times praying for her, while walking by her room, she quieted right down.  I was able to testify about this to one of the chaplains, and he was grateful that I brought it up and going to use it as a teaching point to the other intern-chaplains.  The chaplain also was interested in our church's stand on the spiritual gifts and the social media we use called "the city."  He is hoping to bring "the city" to his church.  We had a few chats about Wayne Greudem, his former professor (wha!?), hospital infrastructure, church structure and discipling members of a church.  Not every day I get to pick at the brain of a PhD in Family and Education Chaplain guy who was taught by the Wayne Greudem.  

I regained confidence, I was finally speaking well, and described the allergic symptoms to so many nurses and residents, that by Monday when the team who cares most about my admission came, they ordered me an Allergy consult (meaning they will call a doctor who specializes in allergy to check me out from an allergy standpoint).  Boy was that fellow good.  A "fellow" is the 3rd step in training for a doctor, after medical school and residency, generally in an area of specialty.  So my favorite person of the whole visit was the Allergy fellow. He was with me for an hour Monday morning, listened to the whole story and put together pieces I, and Mike, had not thought of.  Rather than wracking our brains about what the allergy is, and tearing down our house or brazenly moving away, he put me on an allergy regimen to stop allergy from effecting me.  That has helped tremendously.  He was like our puzzle maker, smoothed out the board and gave us some clarity. I lost that metaphor a while back.  Whoops.

So I'm home now for the 5th day.  I have been waking up looking allergic and not talking, but by the time the allergy meds kick in, everything lifts and I am ready to go for the day.  I have small spells of not swallowing well or slurring a few words, but a lot better than I had expected.  We are still considering wether I am actually going back into remission with the Myasthenia Gravis or if I am just keeping myself at a manageable state. I do not know.  Mike is such a caring husband, he would not like me to have swallowing issues at all, and wants to work towards the disease going into full remission.  Of course, so do I, but I am used to compensating and being flexible with the symptoms.  

On top of all of this, I will be in a study at NYU and have an appointment with one of the doctors there and then will have a 3rd opinion at Columbia a few days later.  All of this news came during the first day home from the hospital! My dad was super-nanny for the whole week and made the week run smoothly, intuitively jumping into my role.  We were so happy to have him here and enjoyed the company to boot!

I was going to aptly throw in the puzzle metaphor, something about God being the master mind and perfect piece-carver, but will let go of it for now and share our detailed hope, the way our heavenly father knows our every move and way, and I hope it gives you just as much hope and peace as these words give me.  

Lord, you have searched me and known me!
You know when I sit down and when I rise up;
    you discern my thoughts from afar.
You search out my path and my lying down
    and are acquainted with all my ways.
Even before a word is on my tongue,
    behold, O Lordyou know it altogether.
You hem me in, behind and before,
    and lay your hand upon me.
Such knowledge is too wonderful for me;
    it is high; I cannot attain it. Psalm 139:1-6

Saturday, December 6, 2014


I can tell when a nurse or doctor comes into my hospital room and really has a vested interest in trying to puzzle together my symptoms to make a diagnosis and plan. The opposite is what Mike and I call a check-the-box mentality.  The check-the-box people work as if they are saying to themselves, "okay, I am here.  You're stable.  Great. I'm outta here. Check this one off the list." They have a list and then they go down the list. Done. Purpose: check boxes.  End purpose: finish checking all boxes. Agenda: Check all my boxes so I can get on with my life.

I am just as guilty as those I am secretly blaming for not thoroughly caring for my every whim.  I'm in a neurological critical care unit, a step down from the icu and a step up from the regular hospital floors.  Many of my fellow floor-mates cannot talk or are immobile.  I am here for a swallowing problem, which has miraculously gotten better quickly, and I am itching to be independent. So, when I press that call button and it appears the Saturday night crew is not sold out for my comfort, I start a little attitude brewing.  But really, am I so perfect that I don't blow through my daily living without depth of thought or caring? Absolutely not.  

Plenty of times I have sat in the car line at the school, frantically googling something or calling someone to cram in the information before the kids come into the car. I have grabbed breakfast on the go all too often this past month just treading water to get the kids to school on time. I have rushed through teaching Naomi spelling words because it just has to be done in time for the daily tests and I had been preoccupied with other fluff that came my way. 

I make for myself plenty of chariots and I buy horses to trust in.  I run with perseverance towards plans and ideas, googling and shopping, charting and dreaming.  The problem is, I find much worth in the information I learn and ideas I plot out, and if something round comes along trying to get into my square idea . . . game over.  Even worse, if I have so many things on the docket that I believe need to be done, I lose the quality and grasp on my original missions. 

So, my favorite verse to set my mind straight on this subject is Psalm 20:7, Some trust in chariots and some in horses, but we trust in the name of the Lord our God.  They collapse and fall, but we rise and stand upright.

I love the solitary time to contemplate this, and the enlightenment that can only come from God giving me understanding and desire to contemplate it. I cannot waste time trusting in my little checked boxes or my cute resident who actually does thoroughly examine me.  Trusting in the treatment and the purified air of the hospital.  For these are excellent for my physical body but the real upright stance comes from trust in the orchestration of the Lord.   For how would they have ever known to purify and love if it were not God who taught them in the first place. 

Friday, December 5, 2014

Gift Giver

I'm in the hospital once again with some kind of exacerbation, not quite known yet if Myasthenia Gravis or another cause.  I am unable to swallow and receiving IVIg treatment under observation. Since my primary job is raising two little beauties knowing I would be in the hospital all weekend, I accepted an offer for my sweet Naomi to have a play date with her friend tomorrow, so I was contemplating a fun way to tell her.  While sitting in my hospital bed, I turned to her, "Guess what, Naomi!  Tomorrow I have a surprise for you." "You're done [being in the hospital]?" she asked as her face lit up.  I didn't say no, I just said I had talked with her friend's mom and told her about the play date. She was still excited, but looked saddened that I would not be "done" tomorrow.  I never would have imagined that me being home was on the forefront of her mind, and would be "a surprise."  The sweet hearted child often puts on such a front of hostility as if she desired neglect, you would think she wants her own apartment at 6 years old. But no, whatever those antics mean, deep down she wants mom home and healthy.  The gift she really is asking for is thick heavy gift that I am unable to control or give.  I can't wrap it up with sparkly paper or make a fancy bow for it. I certainly cannot put it under the Christmas Tree and anticipate her face lighting up while opening it.

I was talking with a mom once about how our Naomi would not sleep when she was 11 months old.  We had a hard time of it, trying to get her down to sleep.  She wanted milk before bed, and other odds and ends until the time was whittled away from us. This kind mother said that sometimes parents feel like they have to "play God" to their children, giving them everything they ask for and catering to their every whim.  If we do this we teach them they have no need for God.  But if the child has had enough food and drink for the day, then asks for milk when it is really time for bed, it is better to direct them to ask God for patience for the morning, and ask the Holy Spirit for help trusting parents that it actually is bedtime.  The kind mother was spot on with what we were doing, reminding me that a better gift is not milk, it is an avenue that leads to trusting in the Lord.

So I sit here at the med center, about to turn in for the night.  My anxious heart has been tormenting me throughout the last month or so, climaxing at the last few days.  I had serious fear.  Fear of not being around for Christmas, and being the lady in the "Christmas Shoes" song.  Far worse from my physical disease, I had an anxious heart absent from peace.  Now, I know some scriptures, I read them and have verses memorized, especially the ones about fear and peace that transcends understanding. But I cannot give myself the peace.  I have had beautiful prayers and petitions texted to me and read to me, and friends praying over me in person.  But they cannot give me the peace, and many of them fell on an unbelieving mind that trickled away into doubt.  But somehow, in this sterile hospital, the peace came throughout the afternoon.  I know I was lifted up in prayer by many family and friends, and I know that this morning I felt heavy and this evening I feel lighter. How could I possibly explain the song in my heart while lapping the unit, the nurse who played christmas music while putting in my picc line, the scripture that played like a movie screen when I closed my eyes, and the exceedingly timlely apt words from family and friends.  It cannot possibly be just friends and family sticking by.  It has to be the Lord orchestrating this moment.

The Prince of Peace truly is an excellent and timely gift giver.  

Sunday, October 12, 2014


Hospital stay, Day 5

I was unplugged today.  The telemetry came off, and Mike walked me down the halls of the hospital with my apprehensive posture.  Babying my heart catheter and coddling my right arm iv line, I was somewhere between Red (from Shawshank Redemption) "institutionalized" even when getting out of jail; Nemo, sad about his tiny fin; and Rapunzel, feeling grass for the first time.  There is a de-conditioning that envelopes you when you get admitted to the hospital, so putting on regular clothes was a step towards regaining humanity and starting to live again, and I was very grateful.  Getting the 5 telemetry stickers off and unplugging, walking away in sneakers, sans the yellow hospital slipper-socks, was a sure bonus to my day and week.

The largest lesson I learned today was that my emotions, anxiety, thoughts, company, and food choices all grossly affect the rate at which my heart beats and my blood pressure.  I got out of bed and brushed my teeth, powdered my nose for the day, and it crawled up to the 90's.  My adorable and supportive friend Stephanie made pumpkin pie bars, and with each bite, my heart rate increased 10-15 bpm, then settled back down again to my normal 80 bpm.   As I was tempted to bitterness and anger, it skyrocketed to 150 bpm!  Nurses came running in and checking on me.  It was such a silent contemplation of anger, that it was as if a microscope was on my thought process, and the LED screens on the unit projected my thoughts.  It was bad enough that I was angry, but come on, "Get out of my head, you people!" 

We are called to take every thought captive and make it obedient to Christ.  We are taught to forgive 7 x 70 times.  The Word of God says that God "will remove our transgressions from us, as far as the east is from the west," and yet we skip along to beats of anger, discontentment, frustration and anxiety as if it will be a feast for our soul, clinging to them.  We hide them in the pockets of our mind as if they don't effect anything.  It not only feeds our soul garbage, but seems to deplete our physical health!  It grates on us and tears us down.  Who would have known that how we think of others and our circumstances is likely to drive us into a situation where, if we had been on telemetry, the bells would sound. 

Well, today proved to me that these situations can negatively effects our whole body.  If our body really is a temple of the Holy Spirit, our helper left to us by the Living God of the universe, and we are ticking along, habitually harboring offense, slander, no matter how silent, our physical heart is affected and could potentially tell all.  Clearly, something that the Lord already knows! And, it makes me pause.  How selfish am I?  My goodness, where did my goodness go? 

I was thoroughly embarrassed that I had to tell the nurses that I was just upset about something and "being emotional." After coming in 3 times for heightened vital signs, machines dinging and binging, and flashing bright lights to alarm everyone in the Neuroscience ICU that I am contemplating things that are not fruits of the Spirit, this opened the door for them to continually ask if I was "okay," and for me to realize how broken I am. 

The tug between the flesh and the spirit are clearer to me now.  I reflexively listened to the book of Ephesians and Philippians, frantically trying to get these thoughts away from me.  I called and texted my best friends and continued down my little paths of thought.  Thankfully, by resting and praying, Mike counseling me, I was guided to put to rest my anger and upset-ness.  Not only because we are called to do it, but with the added long and short term negative effects on the body.  Our only, one body given to us for this short time on earth to steward, care for, and use to the best of our ability.  This baseline makes it a bit easier to tolerate having a heart catheter rubbing against my collarbone, and multiple day hospital stay.  If it would have taken me a lifetime to learn these lessons without a hospital admission, I would much rather the hospital stay and be discharged having learned. 

But I say, walk by the Spirit, and you will not gratify the desires of the flesh. For the desires of the flesh are against the Spirit, and the desires of the Spirit are against the flesh, for these are opposed to each other, to keep you from doing the things you want to do. Galatians 5:16-17 ESV

~Honey bunch is on his way to me, so I'm pretty sure my heart skipped a beat.