Pressing On …With and In The Grace

4 February 2000

Dear friends and family,

This past Tuesday was “D Day” (disease day), at Mayo, in Rochester.  My sister, a nurse, joined me to help guard against escaping physicians (at least until I had all my questions answered).  This time the appointment was with a “super specialist” - a Neurologist who specializes in the field of “movement disorders” (this has nothing to do with, as one person suggested, my “commuting between Minneapolis and Siberia”).

It did not take long for the Neurologist to realize that it is not always good to have two members of my family in the same room.  When he pulled out the MRI images of my brain, I asked if I could have one for my mother.  I said, “She’s always complaining she doesn’t have a recent photo of me.”  When we then asked if he felt a wood or metal picture frame worked best with MRI images, he said I was the interior designer.  Since he brought it up, we pointed out to him that these images were actually images of the interior design of an interior designer.

At this point, it was too much for the guy with the Ph.D.  He wheeled his chair away from the MRI light box, leaned back in it, and declared, “I’m Scandinavian.”  To explain, he continued, “I don’t have a good joke in me.  Where do you come up with this stuff?”  We “turned it off” (mother would have been proud) and let him continue with his rather dry explanation of my brain and how everything “looks good”.

He ran me through numerous “movement” tests.  This time, unlike the time with the previous Neurologist, I had done my homework and knew what he was looking for.  I could usually tell him what the result of the test would be before I did it.  I knew the tests I could pass, the ones I could fake and pass, and the ones that no matter how hard I tried, I could not cover up the “disorder”.

In the end, his conclusion, as was the previous Neurologist’s, and as was mine from my reading, was that I have a “condition” called “Parkinsonism”. 

Parkinsonism, according to one book, “refers not to a particular disease but to a commonly recognized condition marked by a characteristic set of symptoms”.  While Parkinson’s Disease is “by far the most prevalent type of Parkinsonism”, the Neurologists are, at this point, leaving it open as to the exact form this is going to take.  Besides, it sounds better to have a “condition” than a “disease”. 

Desiring to know, and live in, reality, I asked some reality questions.  I asked what people with Parkinsonism die from.  (Multiple things)  I asked how long they live.  (Shorter than expected (This answer has some serious theological flaws.  If, according to God, He has known the day we will die since before the day we were born, does that not make the notion of a “shortened life” absurd – how can you shorten something that was never longer?)).  We then moved on to less theologically tricky questions. 

I asked what his prognosis was for me at this point in my life at this point in my Parkinsonism.  He said, because there are so many variables with the condition, the disease, and with people, he is only willing to project out 5 years at a time.  He felt that for me, given my age, health, being at level 1 in the “disease” (out of 5), and with the symptom-reducing drugs that are now available, that for the coming 5 years (and hopefully for many following) that I should be able to live a fairly normal life.

He saw no reason for the Parkinsonism to interfere with my ability to do design as long as everyone concerned could live with the symptoms, the biggest now being the increasingly hard to stop, and hide, hand/arm tremor.  It’s interesting that, although the tremor is in my drawing hand, with it being a “resting tremor”, the tremor stops as soon as I start to draw.  Cool.   

(I have since decided to look at this tremor thing for its entertainment value.  I simply have a hand that when not being asked to do anything, quickly becomes bored.  It, being the creative hand that it is, starts to entertain itself, and everyone else around.  Thus, it is really not an embarrassment, but an entertainment.)

It was now time for THE question.  I told him about what I do in Russia and asked what he thought about my being able to continue this.  With no hesitation in his answer, he said it shouldn’t affect it at all, not even if/when I’m taking drugs to reduce the symptoms.  I then pushed the envelope by asking if he saw any problem with my being there for up to a year at a time.  He said no, only that I may have to live with any new progressions if they were to develop during that time.  It was clear, though, even in his pointing this out, that he was not concerned about it.

Having heard the answers to THE question, the room seemed to fill with angels all singing the Hallelujah chorus.  I had just been given 5 years in Russia, hopefully many more.  God can do a lot in 5 years, and even more in more.

Although the Neurologist was not willing to project out further than 5 years there are certain realities it does not take much reading to run up against.  As they do not yet know what causes the condition or the disease, they have no way of knowing how to stop its progression, nor how to cure it.  They can only throw various drugs at the symptoms.  This approach works well for most people for a number of years, but eventually the effectiveness of the drugs start to diminish.  During this time, although the drugs are masking the symptoms, the disease continues to progress.

Being what they call a “young onset Parkinson’s”, the diminishing effectiveness of the drugs over time creates increasing problems for the long term.  “Young onsets” need the drugs to work longer than most Parkinson’s patients do.  The Neurologist recommended I put off starting any drug “therapy” as long as I can, as long as I can cope with the symptoms.

There is a hope that with all the research currently being done on Parkinson’s that a cure or better treatments will be discovered.  But it is, at this point, still a hope, not a reality. 

As Michael J Fox said in a recent interview, “With Parkinson’s, time is of the essence.”  Since I believe this is true of all things for all people this side of eternity, I would rephrase it and say, “For people with Parkinson’s, there is an increased awareness of the reality that time is of the essence”   

When I wrote the first letter sharing the news of the possible Parkinson’s diagnosis, I noticed after I had sent it that I had misreferenced the verse I quoted, Philippians 1 v12, as Philippians 2 v12.  Knowing God works in all things, including our mistakes, I was curious what this “mis” referenced verse was.  When I saw it, I laughed.  God smiled.  This verse ends with these words:

“…work out your salvation with fear and trembling.”

With Parkinsonism, this is built in, it’s part of the package.  I already have a right hand/arm that can’t seem to stop “trembling”.  And after reading about what Parkinson’s is and what typically happens down the road to one who has it, the “fear” part is also very adequately covered.

 Yesterday, I went to this verse again, but this time I also read the verse that follows.  This verse that follows has suddenly become a much harder verse.  From yesterday’s time with God: 

Ph 2 v12, 13

“…work out your salvation with fear and trembling; for it is God who is at work in you, both to will and to work for His good pleasure.”

Verse 13 is a really hard verse to understand in light of Parkinsonism.  How does Parkinsonism in me work with the statement that “it is God who is at work in you”?  How does Parkinsonism fit into “for His good pleasure”?

 On the one hand, there is tremendous assurance and encouragement in knowing that God is “in” even something as hideous as Parkinsonism.  Yet, there is a difficulty in understanding how this actually works.  There is a difficulty in knowing how God, with and in all His great attributes, is working in this.  It’s a theology twister. 

But I want to know.  I want to know not how to work this into my concept of who I think God is or should be, but to know this as it is, as it truly is with who God truly is.  To see this as God sees this.  To know the purpose of this as God defines the purpose of this.  To know, as much as is possible, the mind of God.  To understand this not in light of what my puny finite brain thinks (I saw the MRI), but in light of the infinite mind of an all-knowing, all wise, almighty, all loving, and all-merciful God. 

It comes down to a knowing God thing.  And there is a lot I do not know.  But I desire, now more than ever, to press on to know this God. 

Ph 3 v8, 10, 14

“…I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish in order that I may gain Christ …that I may know Him, and the power of His resurrection and the fellowship of His sufferings, being conformed to His death …I press on toward the goal for the prize of the upward call of God in Christ Jesus.”

Thanks for the prayers.  Remember the Russians.

Pressing on,

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