Sunday, January 30, 2011

... And Looking Forward to Hope

Now, if living with fear means being content with the situation, then that leads straight into the idea of hope.  To hope is to look forward to something with desire and reasonable confidence.  We hear statements like that all the time.  “I hope that it’s a nice wedding,” or, “I hope that it doesn’t rain,” or “I hope you’ll be able to make it.”  These are all things that we desire and can be confident will happen.  I’ve never seen a wedding that wasn’t nice, personally.
But where can someone with PD, or any other chronic or progressive illness for that matter, find any reason to have hope?  Sure, there’s a possible vaccine for PD that may arrest or even reverse the effects of the disease, but it isn’t in even stage 1 clinical trials.  Until they prove enough to the FDA to be able to put it on the market, I can’t place confidence in it.  As it stands, it is still an incurable, progressive disease.  Two parts of hope, according to the definition I gave, are looking forward and reasonable confidence.  I can’t look forward very far in my life and have reasonable confidence in anything.  So where is hope?
What if I wrote the definition again without using “forward?”  Let’s see how it reads now: to look to something with desire and reasonable confidence.  Looking to something instead of looking forward to something.  That’s a whole different ballgame.  I can look to my wife, my son, my priest.  I can look to my father, my mother, my siblings, and my friends.  I can look to all these people with both desire and confidence.  I just changed the definition again.  Now, it seems, it’s to look to someone, not something.
I find the largest portion of my hope in Christ.  This is because it’s not reasonable confidence I have when I look to him, it’s absolute confidence.  So in this case, the definition of hope becomes: to look to Christ with desire and absolute confidence. There’s something I can do easily.  It’s even something I can look forward to.  Essentially, given this, I can look forward to hope.  That’s a complete reversal from where we started.  It’s actually something to look forward to that gives comfort, not chaos.
At this point, I feel like I should take a small amount of time to clarify something.  When I say be content with your situation, and when I say hope in the Lord, I don’t mean, by any stretch of the imagination, that you should be complacent.  I hate the phrase, “let go and let God.”  It inspires such complacency.  Neither contentment nor putting your trust in God lets you off the hook.  This is a journey we’re on.  A journey requires taking steps.  You can’t get anywhere sitting in the middle of the road.
I am not going to the other extreme either, epitomized by another detestable phrase: “God helps those who help themselves.”  If we could help ourselves then why would we need God?  He doesn’t fit in to that equation.  That’s a level of pride, once again, as we do so often, that puts us on his level.  
So we must be content and look forward to hope without being complacent.  This, I believe, is essential when dealing with chronic illness.  The problem therein is putting it to practice.  One of the best verses on doing so I’ve ever seen is Micah 6:8

He has told you, O mortal, what is good;
and what does the Lord require of you
but to do justice, and to love kindness,
 and  to walk  humbly with your God?
This is the core of hope.  Doing justice, loving kindness, and walking humbly with our God.  The first two go hand in hand and tie directly into the third.  For those of us with chronic illnesses, doing these things does something more extraordinary.  It pulls our focus away from ourselves and our afflictions and plants it squarely on everything else around us.
The need for justice and kindness (mercy) are all around us.  Look out the front window.  Drive through a depressed neighborhood.  Watch the news, read the paper.  If you can’t find someone who’s in need of help, you’re not looking very hard.  Injustice and hate are all over the world.  When you find someone in need of help and you can help them, then do so.  It doesn’t matter what their situation is.  Alcoholism and drug addiction are choices.  Before throwing out judgment on these people ask yourself this simple question: what drove them to this?
Also, realize that they’re broken, as we all are.  Chronic illness, facing bankruptcy, drinking, drug addiction, homelessness, death, fires; all lead to brokenness.  All of us are in need of justice and mercy.  This isn’t a call to pick a cause of your choice and march with picket signs down Pennsylvania Avenue demanding change.  By doing justice, I mean doing what is right.  What is right is showing mercy, and we learn mercy by walking humbly with God.
Another thing that PD and other chronic illness does to a person is it teaches us, rather forcefully, about humility.  As my priest said in a sermon, “humility, not humiliation.”  There’s plenty of humiliation with chronic illness, especially when you fall, in full view of many people, into the Director of Clinical Education’s wife at the company Christmas party.  Yes, this is something I did.  And no, I wasn’t drunk.  I had only two drinks over the course of four or five hours.  Or, maybe, falling into the candy rack as another parky friend of mine did.  (As an aside, I will not use people’s real names here and neither my priest nor my friend  have chosen a pseudonym yet.  I do this to protect privacy.)
Humiliation abound, I assure you, but I’m talking about humility.  We’re taught humility not from public falls, but the ones that no one sees.  We’re taught humility when we struggle to open a paper milk carton, or when the pickle jar won’t pop open, or when going up a flight of stairs becomes a major issue.  It really teaches humility when you’re thirty-one-years-old and these things happen around (but not noticed by) people much older than you are.  These unnoticed struggles are what remind us that we can’t do this on our own.
When you have these struggles, that’s when you can humbly look to Christ Jesus and say, “help me.  I can‘t do this alone.”  There’s that “look to” phrase again.  This is what hope is, realizing that we can’t do this alone, and also, that we aren’t alone.  So, in some ways, looking forward to hope means looking forward to brokenness.  I know, you’re thinking, “oh joy, oh joy; I get to be broken.  No thanks, I think I’ll pass.  Doesn’t sound too pleasant, if you ask me.”
Except, brokenness can’t be avoided.  With Parkinson’s, brokenness manifests itself in different ways daily.  For others, brokenness will come.  It’s a time where we as humans want to shake our fists at the heavens and curse God at the top of our voices. Except,
Blessed are the poor in spirit, for theirs is the Kingdom of Heaven.
Blessed are those who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the earth.
Blessed are those who hunger and thirst for righteousness, for they will be filled.
Blessed are the merciful, for they will receive mercy.
Blessed are the pure in heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.
Blessed are those who are persecuted for righteousness’ sake, for
theirs is the kingdom of heaven.
Can you see what I’ve been talking about in those?  Poor in spirit?  It’s the same as humility and brokenness.  Not to say, oh yea, I’m blessed now because I have Parkinson’s Disease.  Truly, I wish the good Lord would take it away from me.  No, I’m blessed because I’m not alone.  Christ is there with me, helping me to bear this burden.  I’ve mourned this, it’s taught me humility, as I’ve previously stated, but I’m blessed.  The next three talk about justice and mercy.  That last one is a bit of a bummer, but this is a broken world.  Not everyone’s going to like us for doing the right thing.
But we are not alone.  We can look to Christ in brokenness.  We can look to Christ when we do the right thing.  We can look to Christ when we show someone the same mercy he showed us.  We can look to Christ when someone tries to hurt us, emotionally or otherwise, for doing what is right.
We can look to Christ when we do nothing more than take a minute to rest in his love.  By resting in his love, we are more able to outpour that same love to those around us.  It’s by resting in Christ where we gain our greatest lesson in hope, and I’ll end this with Christ’s words on that.
Come to me, all you who are weary and are carrying heavy burdens,
and I will give you rest.  Take my yoke upon you and learn from me;
for I am gentle and humble in heart, and you will find rest for your
souls.  For my yoke is easy, and my burden is light. (Matt 11: 28-30)






Saturday, January 29, 2011

An apology to my readers

After procrastination, and the idea of not having the kid around, tonight's post will not be ready by 8 PM.  My wife and I are doing a date.  I do have it started and should have it up at sometime tomorrow.

Saturday, January 22, 2011

Living With Fear...

“In the end, there were only two rules for living with fear (he had come to believe conquering fear was a myth), and he repeated them to himself now as he say waiting.
I must accept those things over which I have no control.
I must turn my adversities into advantages.”
Under the Dome by Stephen King
“I have the strength for everything through him who empowers me.”
—Philippians 4:13 (NAB)

I am afraid.  I’m afraid of what’s to come.  If anyone who has Parkinson’s or any other progressive disease says otherwise, they’re either lying or in denial.  I’m afraid of what my body’s going to do.  I’m afraid of what’s going to go haywire next.  I’m afraid of what this is going to mean for my family financially.  I’m afraid of the choices that are going to eventually have to be made, even though I’ve already made them (and made them known for that matter).
Stephen King is hauntingly right.  Conquering fear, if truth be told, is a myth.  I’m not talking fear as in bogeymen coming out of the closet, or not wanting to talk to someone because you think they might not like you, or a surety that you’re going to do bad on some silly test.  I’m not even talking about being queasy around spiders or when you get too close to high places.  That stuff is apprehension, and apprehensions can be conquered.  I’m talking about deep rooted, not going to go away, and will in all probability fuck up your life fear.  This can’t be conquered; only lived with.
Mr. King also in the quote from his book that I used gives sound advice.  I can’t change that I have Parkinson’s, but I can accept it.  Neither can I change that I’m more limited in what I can do than I was a few years ago.  I can live with it, though.
Does that sound like a pretty positive attitude?  Does that sound like I have it all together?  Unquestionably not is your answer.  I once had someone comment on my “positive outlook.”  I wanted to tell her about all the times I sat up at night, letting my fear of my PD get the best of me.  This leads to some rather dark places (not to worry about those, they’re not that dark, just a bit depressing that puts me on the verge of tears, but no further).  I wanted to tell her that I don’t have it together, that it’s just a face I put on in public and that I’m screaming for God to take this away and give it to someone else.  Just a note about the “someone else” part: I wouldn’t wish PD on my worst enemy.  
I’m stuck with two choices.  Either I choose to accept that I have PD, and that I have new limitations, and that I will continue to have new limitations, or I choose to refuse to accept this adversity that I face and sink into a depth of depression that is dangerous.  There’s this thing I have about being depressed, even though I have a tendency to get depressed about my condition, I don’t like being so.  No, that’s not a strong enough sentiment.  I loathe—I still need better—I know, I abhor being depressed with everything that I hold dear.  In two words, it sucks.
I quoted the last two lines of the Stephen King quote to a friend of mine the other day.  An interesting question arose from that: “How do I turn my weaknesses into strengths,” she asked.  This took me aback.  I had to ask myself the same question.
Personally, my faith plays a huge part in doing so.  In fact, I believe that apart from God, I can’t take my weaknesses and turn them into strengths.  I particularly like the second quote I used from Philippians: “I have the strength for everything through him who empowers me.”  There’s another good passage of scripture on this: “I am content with weaknesses, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong.” (2 COR 12:10 NAB)
I’m not going to get into the theological meanings of these.  I will elaborate on them, being as how my faith is such a part of who I am, but I must realize that I’m not some trained theologian.  I don’t have the education and insights to do such.  I’ve tried to do that before, and I have no idea how right I am in my statements in those posts.  I’m just going to try to tie them into my life and how I find them helpful in dealing with my PD.
I think, though, the key into turning weakness into strength is in being content in my situation.  My hand shakes, along with my foot, but I can still walk.  When I get up in the morning, I’m stiff as a board and my shakiness is through the roof, but my meds help.  My one medication, Azilect, has gone up to $75 per month, but my insurance has a 90 day mail order option that costs $150 for that 90 day supply instead of the $225 I would have to pay getting 30 days at a time.  I have a harder time doing things like opening a milk carton and I get tired much quicker and easier, but I can still work.  If I remember these things, and am content with my situation, then that positive attitude that someone commented on is easy to come by.  Believe it or not, even though I’m not always told this (although the “positive attitude” friend did say this, too), being content with my situation inspires people; and that’s a strength.
On the converse, I’ve also been known to get really pissed off about things, too.  It tends to piss me off that the “gold standard” drug is the same one that’s been used for sixty years.  I don’t even take that one, as it’s believed that it loses effectiveness over time.  That gets my goat, too.  Also, new diagnostic tools (such as a DAT Scan, which can definitively diagnose Parkinson’s), just now got approved by the FDA even though it’s been in use in Europe for the past ten years.  To top it off, insurance companies won’t even dream of covering such a “new” test such as that.  It kills me that hospitals still, after all this time, don’t know how to treat a PD patient.  I had one “parky” friend once tell me that she was given Haldol in the ER.  Haldol works on the dopaminergic pathways is should never, never, never, never, be given to someone with PD.  I’ve heard of worse, but won’t elaborate on this any further.  I’ve made my point.
Dwelling on those things leads to nowhere good.  It leads to apathy.  It leads to depression.  It leads to bitterness.  Bitterness is the worst.  Everyone has had to deal with someone who’s bitter, who doesn’t seem to know how to make a positive statement.  Someone who wouldn’t do so even at gunpoint.  Someone who sees the world as always horrible, and everything everyone around them does is met with conspiracy theories.  No one wants to deal with a person like that.
So, I’m going to put it out there.  Try being content with your situation.  Even though you deal with problems (PWPs are not the only people with problems, I do realize that), be content with your situation and trust that God will take care of it.  If you do that, he’ll always present the opportunity to be able to deal with your problem.  Just be aware, the way to deal with it may not be your way.  Hell, to tell the truth, you may not like it.  Then again, if not God’s wisdom, then who’s?

Tuesday, January 18, 2011

Wow... I Promise More Consistency And...

I need to put my money where my mouth is apparently.  I say that I'll post more, and then, instead of writing, I go an become enamored by the siren song of Facebook, among other things.  It's hard to write when doing things like internet games, Facebook, and sports websites.  That's the problem with technology; it's easy to be distracted instead of doing what you should be doing.  I made this blog as a writing project.  Instead of writing, I do nothing more than succumb to the sweet oblivion of the internet.

Some of my family members suggested that I do more than just write on this blog.  They have no idea what a compliment that is to me.  What I post on here is raw, unplanned, and unedited drivel.  This is the roughest of the rough that "dear reader" sees.  I have never before shown any kind of writing to anyone without at least one rewrite.  Not before I started doing this.  They have suggested that I start trying to publish these musings of mine.  That's not a bad idea, but I need to do some work on some of my posts thus far.  Raw usually means with lack of description.  They need some rewrites, but I can do that.

At least I write my posts out on Microsoft Works (yes, I'm cheap and unwilling to buy Microsoft Office.  A word processing program is a word processing program) and save them. Well, this present posting excluded. That will at least make the job of rewrites a somewhat easier task.  I just need to read through my posts and figure out the one on which I'd like to start rewrites.  I can be sure that, In the Beginning I Shook will certainly make that list.  That would likely end up as a first chapter.

As for my obvious lack of consistency, I think I'm going to have to give myself deadlines to post.  Maybe once a week would do.  Maybe I can do it on Saturday evenings.  Maybe I can make sure they're posted at 8:00 PM.  I like that idea.  I like it a lot.  Plus, posting only once a week does two things.  It makes me more consistent, and I can have a better planned sort of post.  It'll be still pretty rough when posted to the blog, but the planning will definitely not suffer.

As for content, I've had two types.  The first is  my life with PD.  The second was life as a Christian, which turned out sounding like some kind of bible reading instruction, which wasn't what I was going for.  I need to combine my PD with my faith, but not in the this is what the Bible says about dealing with this problem sort of way.   So, next Saturday, at 8:00 PM, there will be a new post.  Please, dear reader, help me hold to this.  Leave me nasty messages if I don't.