Thursday, June 30, 2011

Quick Update

I haven't posted in over a week...oops.  Time for a quick update while my supper cooks.
Firstly, I am back in Michigan.  No, I don't not have classes yet, but I am preaching a few times this summer, so being here makes that easier.  I will be back up to the farm very briefly in August.
Before I left home, we had 6 crias.  I will post pictures of some of them soon. I only have pictures of the first 5.
I saw my neurologist on Tuesday.  He was very pleased with how I was doing.  No changes in medication or anything.  I am being referred to a neurosurgeon to get the lesion in my brain looked at.  It has been there for 2 years and is likely not anything serious, but it will be good to get another opinion on it and an opinion on how frequently I need to have MRI's.
Compared to Ontario in the last few weeks it is hot (low 80's) and sunny. I've been making good use of my pool pass.
Supper is ready and my tummy says I ought to eat it now. :)

Wednesday, June 22, 2011


Sparks dance like fireflies
Against the blue green gray sky
The allure of the flames
Blue and yellow and green and red
Draw me out of my terror
As thunder rumbles without pause
Lightening flashes big and bold
Yellow and silver across the sky
The smell of mint fills the air
Criss cross applesauce
Burning wood and hair
Dirt, soot, refuse
Colors dance before my eyes
Ever changing always the same
Deathly still, no breeze
Smoke rises in all colors
Gray, black, brown, white
The breeze starts
Mint drifts through the air
Trees sway
Flames dance
Rain drops start to fall
Steam rises from a t-shirt
Rain and sweat flow together
Faces red and hot
Close to stir the fire
Far to watch it burn
Against the ever darkening sky
Sparks dance like fireflies

Psalm 30

Some days a picture is worth a thousand words.  Today is one of them.

Monday, June 20, 2011

A2CW: Addicted to Christian Weed

Do you ever start to think about something and then think about something else and eventually end up right back where you started?  That’s a spruce loop.  Some people might call it rabbit trail, but spruce loop is the far better term.   Besides, spruce trees smell better than rabbit poop any day of the week.
Anyhow, we were driving home from some place the other day and I was thinking about a particular time in which I’d gotten lost.  It was a time when I really ought to have known my way, but because of the state my brain was in during that period of my life and because I’d taken some prescription medication that exacerbated the condition, I was in no position to give even the simplest directions (think drunk and high). Anyhow, while I was thinking about that event my brain stumbled upon another event from close to the same time period in my life...
It feels like half a lifetime ago, though in reality it was only about 7 or 8 years ago or so, so about a third of my lifetime ago really.  I hung out with some pretty awesome people that summer.  And by pretty awesome, I mean super awesome.  I don’t know where all of them are now, and that makes me sad, but so goes life. I miss them though and think of them all often.  The ones I have stayed in touch with are mostly married now and some even have children of their own.  There are a few of us left that I know of who are still single.  Often, I wish we could go back to that summer, share what we shared then.
Life was in many ways easier then. We dealt with some pretty crazy stuff that summer, but now, looking back, it seems like such little things compared to all that has happened since then.  That summer, I hadn’t yet learned how to deal with a high school student who was suicidal.  My struggle with an eating disorder and depression hadn’t quite begun yet, though it did follow not overly long afterwards.  I didn’t have a clue what life with seizures was like.  I had no idea what feelings would run through my mind when a doctor would tell me that I was potentially terminal (he was wrong by the way). The struggles we had, although they seemed major then, and some of them were fairly major, all shrink in comparison to everything that has happened since then (and there is a whole bunch I’m not sharing in this public of a forum).  And that’s okay.  That’s not was this is about.  Just a bit of explanation as to why that summer feels like half a lifetime ago.  Think of it has a mini spruce loop.
That summer I was introduced to Christian Weed.  In fact, of the many quotes that graced our quote board (which I almost want to pull out and read, but it’s packed away and I’m tired), one of the few I can remember right now, off the top of my head, is “A2CW” which stood for “Addicted to Christian Weed”.  (The other one I can remember is “Jesus thinks you’re cool” or JTYC), and that is what I began thinking about as I thought about being lost - Christian Weed.
Christian Weed was how we referred to that feeling we got after an all night prayer vigil or a spontaneous session of worship or a time of intense prayer.  It was that feeling of being so filled with the spirit that it overflowed and bubbled out of us, making us laugh uncontrollably or jump and sing with complete abandon, the joy of the Lord that made us completely undignified before our King. That feeling was so addicting, our hunger for the Lord was so strong, that we would do whatever it took to get back to that place and stay in it.  Although there was nothing wrong with that, in fact, there was so much good about it, I wonder though, if maybe perhaps we were a little misguided.
We were addicted to Christian weed. We were searching for one spiritual high after another, always trying to experience that again.  But, like with any drug, no high is ever as high as the first one.  Perhaps it would have been better if we were truly addicted to Jesus, not just to Christian weed.  I’m not saying we weren’t addicted to Jesus, for there is no doubt in my mind that we were all crazy about Jesus.  Our addiction to Jesus is what led us to Christian weed in the first place (Does that make Jesus a gateway drug?), but somehow I think our focus, or at least mine, got shifted away from Jesus and more to towards Christian weed and the feelings that went with worshiping Jesus.  The problem with that is, feelings aren’t always reliable.  When depression took over (and nearly took) my life shortly thereafter, I couldn’t get that high.  No matter how hard I sought it, I couldn’t get the Jesus high.  I couldn’t get high about anything.  I could seek that high all I wanted, but I could never get there.  Instead of seeking Jesus and longing for him, I longed for Christian weed. 
Now, even though my fight with depression has been mostly won (every now and then it rears its ugly head), that habit is sometimes still there.  Sometimes I still find myself longing for a hit of Christian weed.  I search long and hard after it, instead of searching long and hard after Jesus, the only one who can really give me that high.
I don’t blame anyone for that habit.  In fact, I think I have learned a lot from it.  I also cannot say that everyone from that summer had the same experience.  Even though we were all in the same place, we didn’t necessarily have the same experience.  My experience is valid only for me.
Which brings me full circle to where I started.  Sometimes, my brain loses focus and I get lost.  I start searching for what I want instead of what I know I need.  It’s simple, something I’ve known for a long time, but I still can’t always remember it.  The time I was remembering about getting lost (the story at the very beginning of this post) was when I was trying to give someone directions from my high school to home.  I should have known that.  I had known it for a long time, but because my brain was on a binge, I couldn’t do it.  
When my brain and spirit long after a hit of Christian weed I forget that all I really need to do is turn to Jesus and long after him instead.  In the end, He’ll be better than any hit and He will keep me from getting lost. And even when I do get lost, He'll still be there to guide me back to the right path, to get me home even when  I can no longer help myself.
Perhaps it's time to say goodbye to Christian weed and figure out some sort of catchy slogan that communicates an addiction to Jesus instead of to feelings.
And perhaps it is also time to conclude this particular spruce loop.

Sunday, June 19, 2011

Soundtrack of my day

Right from the moment I woke up today, this song has been running through my head.  Not a modern remix of it, but the good old fashioned words sung with an organ.  I've marked some of the words that have stuck out to me the most (ie, have run through my head the most times)

Christ the Solid Rock
My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.

On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When darkness veils His lovely face,
I rest on His unchanging grace;

In every high and stormy gale
My anchor holds within the veil.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

His oath, His covenant, and blood
Support me in the whelming flood;
When every earthly prop gives way,
He then is all my Hope and Stay.

On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When He shall come with trumpet sound,
Oh, may I then in Him be found,
Clothed in His righteousness alone,
Faultless to stand before the throne!
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

Monday, June 13, 2011

My Father's Voice

Every morning that I'm on the farm, almost like clockwork, I hear the good morning voice.  It starts in the back on the upstairs hall "Good Morning Isaac" and then moves forward calling to the girls.  Then downstairs for Ben, Reuben, and Me.  The order changes only if we change beds or someone isn't home.  Every time it says "Good Morning" there is a replying, sleepier voice responding with "Good Morning Papa."  If we fail to respond, the voice calls to us again.  And again, and again, until we respond.
It's that voice, that deep, reassuring voice, that brings us all out of our world of dreams, or the land of half wakefulness that we are lying in. It's the voice of our father, calling to us to once again join the land of the awake.   To rise and do our chores, eat breakfast and continue with our day.
On occasion, his alarm doesn't go off or he is tempted to snuggle under the covers a little longer than normal, or he gets a service call before wake up time and isn't able to "good morning" us at the normal time.  Even though it's a little thing, even though we are all perfectly capable of getting ourselves up in the morning, it throws off our routine.
Often, I am half awake, or even all the way awake before he calls me for morning time. I lay there in my bed and wait for him to call to me.  My ears are tuned to his voice, to the words he is going to say and I am ready to reply.
One morning I lay in my bed, waiting, and waiting, and waiting (he'd snuggled longer than usual).  As I waited I thought about it.  I'm super attentive to my father's voice in the morning time, but what about my other Father?  How often do I sit in silence, in stillness and wait for Him to speak to me?  If I'm completely honest, not often enough.  It's easier to listen for a familiar voice with my normal ears.  It takes more patience to listen with the ears of my heart to another familiar voice. This makes me sad.  It should not be this way.
What about you? Do you find it easier to listen with normal ears than the ears of your heart? How do you train the ears of your heart?
I think it has a lot to do with routine and practice.  My normal ears are trained to hear my father's voice.  It comes every morning.  I expect it.  I spend time with my father, so I know his voice. I think, if I want to tune the ears of my heart towards my Father, I need to make it more of my routine to listen to Him instead of fitting Him into my schedule.  And, I need to expect Him to speak, to call to me.
All this thinking reminded me of a song.  Here's a video.  Unfortunately, I couldn't find one that was captioned.  Sorry.

Friday, June 10, 2011


This rant is directed at no one in particular...mostly just at life in general, yes there have been more than a few triggering events in the last week or so, but they have all been dealt with in a more appropriate manner than a public rant.
It is very frustrating when people try and decide for me what accommodations or support I need or whether or not I should participate in a certain activity.  

I realize I have limitations.  I realize there are things that I cannot or should not do.  I know what these things are.  I know that being around strobe lights is a bad idea.  I know that eating a peanut butter cookie is a bad idea.  I know that staying up late/not getting enough sleep is a bad idea.  I know that driving a car is a bad idea until the seizures go away.  And hey, guess what!  I can make decisions about these kinds of things all by myself!

I know that I need signal lights to alert me to alarm clocks and smoke detectors.  I know that I need to input information in ways other than just normal sound. I know that I need to be careful what I eat so I don't get sick.  I know I need to watch my fluid and potassium intake.  I know I need to take my meds.  I know I need to use handrails if I'm having a bad balance day.  And hey, guess what! I know all those things all by myself!

Even if I don't always act like it (I still like coloring books and play-doh and popsicles and playgrounds), I am an adult. I can make these decisions myself.

I'm no longer 5 or 6 years old.  Or even 14.  I am a responsible adult (at least, most the time).
I touched on this briefly in the post "In the Interim" a short time ago when I shared a post from a friend, but this time, it's my words.   Just because I live with differing abilities doesn't mean I can't make my own decisions.

Let me be a grown-up, please.

Friday, June 03, 2011

When G-d's people pray: A story of healing

Two weeks ago I sat in the emergency room, crying in pain,  listening to a doctor I've seen before and trust (she has a stellar reputation), tell me that I had almost certainly torn the rotator cuff in my left shoulder.
Four days later (Tuesday) I sat in the doctor's office as another doctor agreed with the ER doctor (without having seen her notes) -- I had most likely partially or completely torn my rotator cuff.  I'd be in a sling for 2-3 weeks at least and needed to start physical therapy to safely keep my shoulder from freezing up while not doing any more damage to my shoulder.  He prescribed some narcotic pain killers (ick!) to take the edge off of things and told me to follow-up with a doctor in a week so they could do another, more complete assessment (at the time it was still too swollen and painful to do anything with).
During the following week I very carefully and slowly (one handed typing takes me forever) typed out a prayer request to send to some of my praying friends who are further away and I hadn't communicated with in person.  By the time I sent it out, there were about 70 names on the "to" list.
A week later I returned to yet a third doctor for my follow-up assessment.  She agreed with the conclusions of the first two and referred me on to imaging for x-rays and an ultrasound and told me to continue with my physical therapy, as tolerated, but to be careful so I didn't do any more damage until we knew exactly what we were dealing with.
Today, only 3 days after that assessment, I managed to raise my arm all the way above my head. I haven't worn the sling at all today.  I haven't taken narcotic pain killers since Monday (5 days ago). I have a prescription anti-inflammatory cream that I've been using a couple times a day and a heating pad to help with some muscle stiffness. I'm getting more and more use of it back. I even lifted a quart jar of olives from the refrigerator to the counter this afternoon without too much pain.  I still have no strength in my arm when I have it above shoulder height and it is still painful if I move it wrong.  There are still a few motions (external rotation specifically) that are painful and scary.  And now, at the end of a busy day, it is aching pretty good.

The bottom line is this: either three doctors were independently wrong in their diagnoses or something unexplainable in medical terms happened. (A rotator cuff takes 4-6 months to heal, if it's a partial tear.  A complete tear takes significantly longer.  Medically speaking, 2 weeks post injury, I should not be able to do everything that I can do with it today.)
Some one asked me recently if I believed that G-d still healed people today.  I told him yes then.  I'd tell him an even bigger yes today.  I go Monday for my X-rays and ultrasound.  Anyone really think they'll find something wrong?

Thursday, June 02, 2011

In the Interim

I have thoughts.  I want to write them.  Thoughts about love and alarms and the coming of Christ and Disney Princesses and alpaca babies and sunshine and butterflies and coloring book, but there has been a temporary setback in my ability to write these thoughts out. So in the interim, I leave you with this.  It's part of a note posted by a dear friend of mine (used by permission).  Due to a potentially chronic disease her life has been altered by diet changes and medications.  While her experience is different than mine, many of the things we feel, especially when it comes to social situations, are similar.  She did such a wonderful job capturing her thoughts and feelings, and unintentionally capturing mine, I decided to share.  I resonate most with what she writes about being socially isolated and people trying to make decisions for her.  The awkwardness of having to turn down a dinner invitation or explain special food needs or bring your own food to a function or back out of plans at the last minute because you are too exhausted or slip out to take your meds discretely is almost always less painful than not being invited in the first place. I have limits too, but I am a grown-up and can make my own decisions about when I need to slow down.  And, like my friend, I have a giant granny pill pox too.  (It's almost identical to hers). 
Without further rambling from me, here is the final portion of her note.  The only change I have made it to abbreviate the name of her condition to help protect privacy (and because it's really not that important):

It’s been hard dealing with the drugs and a special diet and everything else, but when I look back to where I was and how far I have come, I am glad I’ve been able to do these things and had people to help me along the way.  Yes, I carry a giant granny pill box with me everywhere and sometimes feel like my life is dictated by my med alarms.   No, I can't usually eat what other people are eating.  But if these things will help me to get my life back, they really are small sacrifices.

But it still has been hard to face my limitations.  It’s been hard to be different.  It’s been hard to not do everything I once did and everything I still think I should be able to do.  It’s been hard to accept help from other people.  It’s been a journey, and I know the journey is not over yet.  But it hasn’t been a journey I’ve had to travel on my own.  Yes, I have often tried to push people out of my life.  I guess it’s like I get to a point where I’m tired of depending on other people and being a burden, so I decide I’m going to live life on my own.  So I try and push everyone away.  But this never works.  God didn’t create us to live life on our own.  He created us for community.  I understand this in my rational moments, but unfortunately, all-too-often I have been less-than-rational.  This journey with LD often feels like one giant roller coaster.  (Honestly, it feels like I’m PMSing 24-7.)  Some days I can handle the ups-and-downs and take it as a part of life.  Other times I just get angry….angry at life, angry at the disease, angry that I can’t do what I want to do, angry at God, and even angry at you, if you happen to be in the wrong place at the wrong time.  I’ve never really been an angry person, and I have a hard time knowing how to deal with this anger.  In retrospect I can usually see what a jerk I was, but at the time, I’m just angry, and say and do things I shouldn’t and hurt people who I love.  (This is not a justification or an excuse because I am still responsible for my own behavior, but when I saw, “moody, irritable, and cry easily” on a list of LD symptoms, at least it made a little more sense where it could be coming from.)

I often feel isolated and lonely in this world of disease.  It’s a world I don’t understand and I’m living in it so I really can’t expect others to be able to understand it.  But I feel like people are always wanting to protect me.  It’s like because I’m sick, I’m now “fragile.”  They’re trying to keep my health and well-being in mind.  They’re trying to help with my healing.  So they end up doing things for me in an attempt to save me energy and bless me.  In some ways I am grateful, as the tasks they do are often things I probably couldn’t do on my own.  But in the process, so often I feel like I’m useless, like I’ve been put up on a shelf with the ceramic figurines, left to gather dust, but beyond that, I’m really not good for anything and will soon be forgotten.  Other times they don’t ask me to help out or be involved in things because they don’t want to overwhelm me.  They’re trying to protect me, and give me a chance to heal.  Like that ceramic figurine placed carefully on the top shelf out of reach, they think it’s a whole lot better to leave me alone than to actually touch me and risk breaking me.  But even if I have limits, I can still make my own choices.  I can be given opportunities and allowed to choose if I take them or not.

In this world of disease, I also often end up feeling very socially isolated.  Not only am I no longer a useful member of society, so often I feel like I am not invited somewhere because they know I can’t eat the food, or I will probably be sleeping, etc.  They don’t want me to feel left out or put me in an awkward situation (such as sitting at a restaurant and trying to explain to the waitress that really, they can’t make food that I can eat so I’m just going to sit here), so I’m just not invited.  But in reality, this just leaves me feeling more lonely and forgotten.  Or I’m with a group of people, and they totally talk “around” me, not even acknowledging my presence.  In these situations I’m left wondering if I’m not wanted, or they’re assuming I don’t want to be included, or they don’t know how to include me so it’s easier to ignore me, or what.  It’s hard.  Our society is very focused around food, and you become VERY aware of this when food is taken from you.  And let me tell you, it’s already a whole lot of fun to be eating a spinach salad while everyone else is enjoying yummy goodies, and it just makes it better when people tell you over and over again, “Yuck!  That looks gross!  I’m sure glad I’m not eating that!”  For the most part, I’ve come to terms with my special diet, but people telling me my food is gross really doesn’t help this situation.  You may not enjoy it, but guess what?  You don't have to eat it, so please keep your comments to yourself.

And speaking of food, yes, I am losing weight, and yes, I am aware that I don’t have weight to lose and that my bones are protruding in places they shouldn’t be.   Yes, I know most my clothes don’t fit me anymore and I look like a bag of bones.  Trust me.  I know these things—without you telling me.  You don’t need to point them out to me, really.  I know them, and everyone else has already taken it upon themselves to remind me of it as well.  I don’t need you joining in, too.  I have become very self-conscious of my body, and you telling me I need to gain some weight doesn’t help.  You try cutting all sugar and gluten out of your diet and not losing weight while you’re healthy, and now add the absorption issues that come with LD to that, and yes, you, too, would be losing weight.  Without your help, I am reminded of this every time I walk by a mirror. Without your help, I am reminded of this every time I put on a pair of jeans and have to tighten my belt to hold them up.  Without your help, I am reminded of this every time I put on a shirt and feel like I’m swimming inside of it.  Without your help, I am reminded of this every time I put on a dress that I’m supposed to wear for one of the weddings I’m in this summer and wonder how I will be able to hide my ugly, gangly body so that I don’t mess of the perfect pictures of the weddings I’m in.  Giving me recipes for high calorie, good-tasting foods that I can actually eat would be a whole lot more effective method of dealing with my weight loss than telling me my clothes don’t fit and I’m going to blow away if I don’t put more meat on my bones.

Most days I’ve come to terms with where I’m at.  I realize I am quite blessed to have family, friends, and doctors who have helped me figure this thing out and get on top of it before it became a bigger monster.  And although I can’t say this journey has been the most fun thing in life, I have also learned a lot through it.  I know God has me here for a reason, and He isn’t abandoning me here.  But there are still plenty of days that are just stinking hard.  And something seemingly small can very easily set me off.  Just last night some friends were going out stargazing.  I LOVE stargazing, but I knew I needed to go to bed.  Instead of being able to handle the situation like a mature adult, knowing there would be plenty more opportunities to go stargazing in the future, I became angry at this stupid disease for interfering with what I wanted to do, and angry at God for leaving me here for so long.  And now today, it’s tough to think about the fact that I am starting year two.  I had gotten to a point where I had accepted the fact that I just need to take one day at a time.  Well-meaning people will often ask me how many drugs I have left or how long it will be til the end.  These are questions I can’t answer, and I have more or less come to terms with not having answers to.  But every time I throw a drug bottle in my empties box and see the pile grow a little more, I think about the pile it came out of….a pile of unknown size.  On good days, I think, “That’s one more bottle closer to being better!” but on bad days, my mind creates a picture of a mountain of full drug bottles so big that the growing pile of empties doesn’t even look like an ant hill in comparison.  This is not a journey that has a known ending date or even destination, so I try and focus on the here and now, seeing how God is working in the midst of it.  But even as much as I try to take it one day at a time and not focus on the time, it’s hard to think that I’m starting another year.  This last year has been tough.  I don’t expect this next one to be easy.  And dare I say it?  I don’t know how many more there will be in this journey....  But God promises to go with me all the way, and I guess if He's going with me, the journey will be worth it!

PS: (From me, not my friend)  I am currently not losing weight.  I'm actually gaining some at this point because my limitations have made it much harder to be as physically active as I should be. But rest of it, spot on.