Friday, January 23, 2015
Monday, January 19, 2015
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 . . ."
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
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
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
Wednesday, December 17, 2014
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
Saturday, December 6, 2014
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
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
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.
~Honey bunch is on his way to me, so I'm pretty sure my heart skipped a beat.