Showing posts with label Tourette Syndrome. Show all posts
Showing posts with label Tourette Syndrome. Show all posts

Telling Stories


Continuing from Monday, when we experience trauma, heartbreak, or disappointment, we cannot change the past.  Maybe something we did spiraled out of control.  Maybe we never had control to begin with.  Either way, the past is set in stone.  There's no going back.  What we can do, however, is choose how to respond.


This has been something that has been on my mind, but watching Kung Fu Panda 2 with my family this weekend really put my thoughts into words.

Your story may not have such a happy beginning but that doesn't make you who you are, it is the rest of your story, who you choose to be.

You got to let go of the stuff from past, because it just doesn't matter. The only thing that matters is what you choose to be now.

Our lives tell stories, but whose?

Many let "life" dictate their stories.  Their circumstances define them.  The people in their lives define them.  Their tragedies define them.  

Others choose to tell their own stories.  As these quotes from KFP2 indicate, these people respond to the past by choosing to write their futures.


However, I believe there is a third choice.  Maybe it's a lifetime of fighting circumstances I can't overcome.  Maybe it's my more recent incident of coming down with Tourette Syndrome.  Maybe it's a personality thing.  It's probably a bit of the above.  I choose option three.  I won't merely be a victim of my circumstances, but I don't believe in writing story, either.  It's not that I won't.  I can't.  I'm a poor author.  I'm Moses, in the desert with sheep and a bad stutter.


There is a turning-point.  That point at which a person decides not to let life toss them in every-which-direction.  But I also believe that I'm not the person to take back control.  There's a better person for that job.  It's not my story, and it's not about me.  It's all about God.  It's His story, and I'm just a part of that.  Whatever story he wants to tell with my life- I've decided that I'm OK with that.  In the moments that I'm not- and they come- I decide that I will be OK with it.  

There is a difference in simply allowing life to happen, actively authoring one's life, and actively allowing the Great Author the room to write.  Don't confuse the three.  The journey itself is a story, but it's one worth telling.
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Frustration of Purpose


The TS saga continues.  I spent more time on the phone today.  I was put on hold five times within the same conversation.  I love how the "you're on hold" music is so cheery and joyful, almost like it's mocking my misery.  At this point, it doesn't look like I will be able to get an appointment.  It looks like I'll have to take my finals without any TS medication.  Now, TS medication isn't medically necessary.  Physically, I can't be harmed by TS symptoms, unless I tic violently at the top of a flight of stairs or something.  But tics are obnoxious.  Imagine going through life having no control over your physical body.  Your head jerks around, you get whiplash, you scream every so often.  It's no fun.

After I got off the phone with my neurologist's receptionist, I was very angry and frustrated.  Why did my old medication suddenly decide to give me major side effects now?  Why can't I get an appointment?  Why can't they call me back when they say they'll call me back?  Why am I being put on hold five times in the same conversation?  Why?  Why?  Why?

Then I realized it's all God's fault.  If he wanted my medication to work without giving me major side effects, I wouldn't get the side effects.  If he wanted me to get an appointment, I would get an appointment.  If he wanted me to be healthy, I wouldn't have TS.

My internal dialogue went something like this:
Seriously, God?
So you really want me to go through finals without having medication, huh?
But don't you know I need to do well on my finals?
Don't you know that if I don't do well, I won't have the finances to continue in law school?
Wasn't it your idea for me to go to law school?
I thought this was my "calling."
What if I fail at my calling?  What am I supposed to do then, huh?
Why are you against me?  Why are you frustrating my purpose?

I'm not sure why I landed on the thought of "frustration of purpose."  It sounds like something that would be in the Bible, maybe in the Psalms, or maybe when Paul was trying to get into Asia but couldn't.  Or maybe I thought of it because my contracts reading last night was titled "frustration of purpose."

Maybe God really is frustrating my purposes.  I thought about it, and then I kind of laughed at myself.  God frustrating me?  If I stepped back, if I didn't think about TS and finals and being put on hold- if I just thought about it for a second, it's rather laughable.  Me, a speck on this earth, pointing up at God, "You're frustrating me!  I have plans, you know, and you're ruining them!  How dare you!"

Somehow God hasn't struck me down with lightning yet.

Again, I'm reminded of holy week.  It's weird, how I keep having to remind myself.  So forgetful.  So silly.  One minute, I can praise God and thank him for the cross, and the next minute I'm telling God that he's frustrating my plans.

And He hasn't struck me down with lightning yet.

Isn't that amazing?  The grace, the love, the longsuffering, and the patience?  I think God sometimes looks at me and *facepalms*, yet he continues to love me.  That's what the cross is about.  It's about me failing time and time again.  It's about how I couldn't have pleased God even if I wanted to or tried.  But more importantly, it's not about me at all.

It's about the purposes of God, and how I can never, ever frustrate them.

edit: Awesomely enough, I finally was able to get an appt.  Praise God!
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Passover



Complaint



There is a song by Relient K that has the chorus:
Life could you be a little softer to me.
Life could you be more gentle to me.
Yeah I know this is a selfish plea,
Because Christ sacrificed his flesh
On the cross for me
I wrote about some of my recent Tourette's issues earlier.  I scheduled an appointment to see her on the one day I had off.  They confirmed over the phone that I had that appointment.  Yesterday, I found out the office messed up the scheduling.  I've been calling the office all day (Monday), and the receptionist assured me that she would call back by 5pm.  She didn't.  Now I'm dealing with TS symptoms and trying to study for finals.  If things continue as the are, I won't have any medication for finals and will take them with unabated TS symptoms.  At times like this, I'm really tempted to complain.  Why do I have to deal with all this?  I don't feel like I deserve this.  Yeah, I know I'm  selfish, but sometimes it would be nice if life were a little easier.  Why can't life's troubles pass over me?


Confession



And then I remembered that it's Lent, and more than that- Holy Week.  I remember my brokenness, and I'm filled with shame.  Just yesterday I was sitting in Palm Sunday service feeling sorry for myself because my pew was empty.  All the feelings of loneliness and frustration in not being able to find a church came back to me.  I was sitting in the House of God, and I felt so alone.  I was supposed to be worshiping God, but I couldn't get over my own self-absorption.  How shameful.  I  don't deserve your love or goodness.  Just pass me by.  Don't even look at me.  Pass over me.


Comprehension



Death passed over the early believers, the ones that had faith in Yahweh's promise.  But Yahweh didn't meet them.  Their only interaction with Him was on a mountain.  Twice-made carved stone.  A veiled, radiant face.  A cloud by day, a fire by night.  A tent.  The Holy-Holiest room into which one person with a rope around his ankle barely dared to tread once a year.

Death passes over us believers as well, the ones that have faith in Yahweh's promise.  While Death flies overhead, Christ is the sacrificial lamb.  We stay huddled in our tents and eat the bread and drink the wine, his body and blood.  Christ is our High Priest, but He is not the priest looking at us with disgust and disdain and taking the other side of the road and leaving us to die.  No, he stopped for us, and he let us kill him.  Why?  He could have let us perish, but He didn't.  He did not pass over us.  I do not understand.  Such knowledge is too wonderful for me.  It is high; I cannot attain it.
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How I apply Scripture



A story


I don't normally post about my day to day life on the blog because it's not that kind of blog.  However, if I describe what happened between the time I decided to post on Philippians 4 last week and the time I'm actually writing this post, I feel my experience may help by way of illustration of applying the Bible to daily life instead of to nice, neat hypotheticals.  If we're going to say the Bible is applicable to life and godliness, then we should really apply it to life and for godliness.  If you want to bypass my boring story, though, you can skip to the end, and that's fine with me.  The short version is that I had a bad week.

Sometime last week, my life got a bit more stressful, and my TS symptoms got worse. So I took TS meds, which is something I haven't done in a good while. Then my knuckles started swelling and were really painful, which made it hard to type. I thought I was having a reaction to the meds, and I spent 2 hours at the hospital on Friday. Then Sunday I went back for the most painful blood test I've ever gotten. (Still have the bruise.)

Additionally, I had a sore throat Thursday and Friday, the kind that hurts from your tongue to halfway down your esophagus.  Monday I woke up nauseated and dizzy; I skipped class but didn't get any better. Tuesday, I was even more nauseated, and the room still spun a bit. Wednesday, the nausea lessened but I still couldn't eat much more than rice. Thursday I was nauseated but mainly just really hungry because I hadn't really eaten for a few days.

I have a 14 page paper due next week. Being nauseated and dizzy isn't good for productivity, and neither is having swollen joints that don't cooperate when you type.  Not eating isn't good for productivity, either. Being sick leads to physical stress and non-productivity leads to psychological stress, and stress of any type leads to more TS symptoms. Then the TS worsens productivity...you get the idea.  The room may have stopped spinning, but between my flu and the TS and the swollen joints, my entire body hurts, and I'm just plain tired.


Stepping Back


I say this not to complain or to get sympathy- there are a lot worse things going on in the world right now.  I, myself, have been through a lot worse.  But the point is that God meets us where we are, in whatever circumstances we are facing.

Though life itself is stressful, and my body is under a lot of stress, I, personally, am [trying to be] not all that stressed.  And the reason why I'm not stressed [or at least somewhat successful at it] is because I've been meditating on this passage all week.


Joy, reasonableness, prayer, and peace



I'm rejoicing in the Lord.  Why?  The real question is WHY NOT?  If I understand what I have in the Lord and what he's given me- if I understand the all-surpassing worth of knowing Christ Jesus my Lord, rejoicing is the reasonable thing to do.  It makes sense, and it doesn't matter what else is going on in my life.  When the room is spinning or when each letter typed burns through my hands or if I'm in class trying to suppress the TS, or if I'm worried about how I'm going to finish my paper on time given all of this- God is bigger.  God is better.  God is greater.  God is good, and He has shared His goodness with me.  I preach the Gospel to myself and force myself to listen.

We react to the things in our lives; that's natural and probably healthy to do.  But we don't let them control us.  External circumstances are just that- external.  However, internally, we have the Spirit.  We learn not only to rejoice, but to rejoice always.  We learn not only to not be anxious, but not be anxious about anything.  We learn not only how to pray, but to pray about everything.  We learn to give thanks while we give our supplications because there is always so much to be thankful for.  And when we know that we have things to be thankful for, we have peace that the God who gave us so much will give us also what we need.

Philippians 4:4-7
Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
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Tourette Syndrome Experiment


A month ago I announced that I was starting an experiment, and I would announce the results in a month if successful or earlier if it proved unsuccessful.  Well, clearly a month has passed without any news, and I can now say that the experiment was indeed successful!  The experiment itself?  Two months ago I started lowering the dosage of my TS medication, and for the last month I have been completely off the drug.  There were minimal side effects; in fact, during the first week off the medicine, I felt fantastic.  (The following inset text is mainly to satisfy my physiology background.  Feel free to skip, but I'll do my best to make it easy enough for a lay person to understand):
Dopamine is a neuromodulator, which for our purposes means it is a chemical found in the brain that effects the way the brain functions.  With regards to movement, it can either encourage movement or disinhibit movement (ie remove inhibition of movement, allowing for more movement).  Simply, dopamine can work in different ways, but the end result is always the same- more movement.  Since tics are excessive, unwanted movements, it makes sense that blocking the effects of dopamine may help alleviate the tics.  ("May" is the word here because the neuroscientists and neurologists aren't entirely sure how all this works.)  

The TS medication I took was primarily a dopamine type 2 receptor inhibitor, which means it blocked the effect of dopamine in certain pathways, including but not limited to the movement pathway.  The thing is, dopamine is everywhere in the brain and effects a lot of things besides movement.  Blocking dopamine is kind of like giving a cancer patient radiation therapy.  It's hard to remove just what you want because other areas of the body become adversely affected.  (It's not the best example, I know.  I would never compare being a TS patient to being a cancer patient, but with the prevalence of cancer these days, I think it is something that most people can understand.)  For me, the dopamine blocker did the trick; it alleviated my tics.  However, the tic relief also came with many side effects.  This is why I decided to see if I would be able to get off the medication.
 At any rate, I went through finals week and a few other stressful experiences without being on the medication.    My symptoms haven't gone away; I just don't need medication to manage them right now.  I've ticked here and there, but I only had one major outburst, which was understandable given the situation.  I don't think medication is bad, and the possibility exists that I might need it again in the future.  The Lord gives, and the Lord takes away.  Right now He's given, but if He takes away again, I'll trust that it's for the best, even if it's not the easiest.  But for now I thank God that my symptoms are more or less under control, for the common grace of modern medicine, and that my family has medical insurance.

For additional reading, see my other post on my experiences with TS.
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Fear Pt 3: Tourette Syndrome and Christ


You know how in those let's-be-honest-and-get-to-know-each-other games, somehow the question of, "What's your biggest fear" comes up?  The thing is, I don't think people are entirely honest about things like that.  Or maybe I'm projecting.  It's easy to say things like spiders or even being crushed by a 2-ton spring-loaded garage door because your parents never bothered upgrading to the metal type that can't kill people (not that I have personal experience with that particular fear or anything), but it's harder to say things that we really fear like "dying alone" or "never 'finding' love."

A few years ago, my unspoken fear was somehow getting a neurological disorder or receiving head trauma that would leave me retarded.  I never said it, but I thought about it.  I was never particularly pretty or athletic or popular, but at the time, I was at the top of my class.  I wouldn't go so far as to say as it "identified" me, but it definitely was the "thing" that I brought to the table.  I didn't want to lose that.

Four years later, I wouldn't exactly say that my fears came true, but my circumstances definitely came close.  Developing a motor tic my first year of college, the diagnosis eventually became Tourette Syndrome (TS) and though it hasn't affected my intellect itself, I definitely look retarded at times (in the most literal way.  I don't know what the PC kids call it now-a-days).  Even after my TS was diagnosed, I feared that it would get worse.  And it did.  And even now, it still continues to get worse.

But I've stopped worrying.  I feel that I've been through enough to make me fearless.  There's no need to worry because worrying never healed anyone, and you might as well make the most of what you have.  Also, I've become convinced that God uses our fears to show His Sovereignty.  What I mean to say is that our fears reveal the areas of our life with which we don't trust God and His Goodness.  We fear because we don't believe God will be enough.  I think God wants to break us of our fears, and the most efficient way for us to learn not to fear is to face them.

We have to walk through the valley of the shadow of death.  At first, we dread the cliffs and the darkness and the unknown, but at the end, we realize that our Shepherd was telling the truth all along.  When He said that He would take care of us, He meant it, and He had the power to follow through.  But we don't know that until we experience it for ourselves.
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