Tomorrow is my husband’s birthday.  Here’s why I think he’s such a great guy:

He married me AFTER I was diagnosed with PD.

He’s really, really, really smart but if you ask him he’ll tell you he’s not (Well, he’ll admit to smart without the really, really, really).

He loves baseball.

He knows the bands I’m going to love before I even hear them.

He has super great friends he has met through his love of music and they let me hang out with them sometimes.

He’s mostly right (some of the time).

He buys the most perfect gifts.  Somehow he knows exactly what I want or need even if I don’t realize it yet.

He’s a great listener.

He really understands me.

He puts up with my insane family.

and

He’s a funny guy.  Really, I admit it.

Happy Birthday, Chris!  I  love you.

The parking deck I use is semi-attached to the clinic I work for.  The clinic is part of a large teaching hospital.  I park in the same spot every day thanks mainly to my handicap parking licence plate and the fact that I get to work at 7 am.  The level of the deck I park on is mostly full of doctors.

This morning a doctor who I meet at the elevator once or twice a week commented on the volume of my music as I drive in to park each morning.

“It’s not good for your hearing”, he says, “you’re going to damage it.”  “See my cane”, I ask him.  “I have Parkinson’s disease.  I think the odds of loud music getting me before the progressive neurological disease is slight.  I’ll take my chances with great rock and roll played a little too loud.”

The thing is, working in a hospital, doctors have a tendency to watch me, to try to puzzle out what is wrong with me but never, ever actually ask.  I think he was relieved that I finally told him what  is wrong with me.

We cannot always change the things we do not like in our lives.  Things happen that are out of our control.  The fact that we cannot change these things, that we are not responsible for them, rarely makes us feel better in the end.

This is a major thing about having a disease like Parkinson’s.  Not only am I slowly losing control of my own body but I am less and less able to control the world around me.  It’s little things.  I’d like to paint my bedroom (it’s this hideous pale blue color that I must have been drunk or blind when I bought it) but I just can’t.  My hand won’t hold a brush or roller in a smooth, steady fashion anymore and I have been explicitly banned from all ladders and chairs by my husband and sisters.

It seems like my list of cannot do grows longer by the second and I wonder what happened.   I used to be one of those people who did things, fixed things, made things.

The things I can still do I tend to do with utter abandon.  I listen to my music too loud.  I read too much.  I write and throw away countless attempts at novels.  I watch too much baseball and football (my youngest sister calls me a dude for this).

I can’t always dwell what I can’t do but the reality is I can not do so many things anymore.  I suppose one day I’m going to wake up and not be able to walk from the parking deck into my office.  What then?  When that door shuts I can’t see any window opening that will replace the ability to walk.  What then?  I just don’t know.  For know I’ll stick with my too loud music and let it drown out everything else…

I sit at my table,
And wage war on myself,
It seems like it's all for nothing.
I know the barricades,
And I know the mortar in the wall breaks,
I recognise the weapons,
I've used them well.

This is my mistake,
Let me make it good,
I raised the wall,
and I will be the one to knock it down.

I've a rich understanding of my finest defences.
I proclaim that claims are left unstated,
I demand a rematch.
I decree a stalemate.
I divine my deeper motives.
I recognise the weapons,
I've practised them well,
I fitted them myself.
It's amazing what devices you can sympathise,
[Empathise].
This is my mistake,
Let me make it good,
I raised the wall,
and I will be the one to knock it down.

Reach out for me,
Hold me tight,
Hold that memory.
Let my machine talk to me,
Let my machine talk to me.

This is my world,
And I am the World Leader Pretend.
This is my life, and this is my time,
I have been given the freedom to do as I see fit.
It's high time I razed the walls that I've constructed.

It's amazing what devices you can sympathise,
[Empathise].
This is my mistake,
Let me make it good.
I raised the wall,
And I will be the one to knock it down.

You fill in the mortar,
You fill in the harmony,
You fill in the mortar.
I raised the wall,
And I'm the only one,
I will be the one to knock it down."
World Leader Pretend, REM

Tomorrow is Father’s Day.  I think we can all remember the #1 Dad tee-shirts that we bought our dad’s as kids or the homemade ash-trays/belts/key chains/coffee mugs that we made for them.  I think I did all of these things.

My dad and I have always shared a special bond that I think transcends the average father-daughter connection.  See, I was accidentally born at home.  My dad delivered me, was my attending physician although he’s not a doctor-he’s an electrician.  My dad quite literally brought me into the world.  Cut my umbilical cord himself.  Called the ambulance for me and my mom so we could go to the hospital and get checked out.  He did that.

My dad taught me love of football.  My passion for the Denver Broncos, twenty-one years after moving to Arkansas, began watching dad cheer for the great Orange Crush teams of the eighties.  My dad taught me everything I know about cars, home-improvement, and general handiman-ness.  My dad coached my soccer team when I was a kid, built sets for the theater department when I was in high school, and taught me how to drive a standard (something everyone should be able to do).  He took me camping as a kid, taught me to ride a bike, and took me sledding.

So, dad, thanks.  I love you.

“What do you think?  Is it normal?

To go though life oh so formal?”

-Smith Westerns, “Weekend”

 

I think I have mentioned this before but I don’t work on Fridays so Thursday is my Friday.  I three day weekend sounds great but if you work ten hour shifts your first day off is probably going to be spent mostly laying around doing nothing.  I take a lot of naps.

This weekend I have a list of Things I Should Do.  I will, most likely, get to almost none of them.  I’m the classic example of good intentions with no follow-though.  A good book will call my name or I’ll get caught up in the ridiculous novel I’m attempting to write.  It happens every weekend.

Maybe I’ll sit around in the air conditioning because it’s going to be a million degrees and watch college baseball.  And eat popsicles.

“cause you don’t mind seeing yourself in a picture
as long as you look faraway, as long as you look removed”

-The National, “Mistaken For Strangers”

 

It’s summertime and I feel like I should be riding a bicycle or hiking or canoeing or something.  About the most active thing I am able to do outside anymore is walk on smooth pavement…slowly, with a limp.  I can’t even imagine the comedy/tragedy it would be for me to attempt to climb into a canoe.

I used to be an active person.  I used to DO things.  I used to enjoy sleeping in a tent on hot nights.  Now, even sleeping in my nice bed at home in a struggle some nights.

I’ve been thinking about the hike down to the waterfall at Petite Jean a lot lately.  It’s a beautiful hike, a bit steep at times but not terribly difficult.  When I was younger we would hike down to the falls any time we were bored or just needed to get outside for awhile.  Now, I know that I will never go down there again.  For some reason, this makes me enormously sad.  Of all the things I can now longer do, that hike haunts me the most.

Mostly, I accept my limits.  So I can no longer run, ride a bicycle, climb a ladder, use a hammer, the list is long.  I can still do most of the things I love.  Music still sounds just as sweet.  Baseball and football games are still just as fun to watch.

But still…

Do you ever wonder what’s really out there?  I read, a lot.  I’ll read almost anything but every once in a while I get on a fantasy/scifi kick.  I love the idea of alternate universes.  I love the idea of rips in the space-time continuum.  I love the idea that there might be another me out there in a slightly different universe that does the things I like to do but maybe without the Parkinson’s…and maybe she’s thinner too.  Hey, it’s my imaginary universe.

My mom and I had a conversation this weekend about angels.  She believes in them and I don’t.  I don’t understand why so many people believe in angels but then say that they don’t believe in ghosts.  I know some angels where never human.  But at the same time popular songs and modern lore often speak of the dead becoming angels.  If they are dead isn’t that basically a ghost?  Cannot ghosts be helpful?  Or is this a trait particular to angels?  How can I be expected to believe in one and not the other?

Okay, so I believe in ghosts.  But not angels, or maybe I think that they are the same thing.

So I believe in tears in the space-time continuum and ghosts but not so much aliens.  I do believe that the universe is too big for Earth to be the only planet with intelligent life but I don’t think that we have been visited by any of those extra-terrestrial life forms.  Sorry, Area-51 geeks.

All this makes me slightly insane, don’t you think?  I’m okay with it.  If only I could put my over-active imagination on paper.

My favorite song lyric is from “Box Full of Letters” by Wilco: “I just can’t find the time to write my mind the way I want it to read”.

This sums up my feeling about writing.  I want to write, in fact I do in drips and splatters.  I just can’t ever finish anything that I start, or polish anything into the shine I think it should have.

I feel like that about blogging too.  Conflicted.  I WANT to blog but I don’t know if I really have anything interesting to say.  I start more posts than I ever publish.

I’m listening to The Baseball Project as I write and thinking about this weekend’s round of College World Series regionals.  I love baseball.  I love college baseball.  I wish I knew enough about baseball to write about it but I’m more of a causal fan.  Oh, I know my stats and positions.  I know most of the major league players and some of the better minor league.  But that’s just part of knowing the game, enjoying how it’s played.

I love music the same way.  That excitement of fining a new band before most anyone else you know.  The quite snobbery of KNOWING that I probably listen to better music than you do…whoever you are.  The great friends I have met through music at stale little bars and in people’s front yards.  I’d like to write about that too.  I just don’t actually know enough about music to do so.  I know what I like and I could probably tell you why I like it, sort of.

Writing about my Parkinson’s disease is even more difficult.  It’s personal.   It affects my emotions as well as my body.  Sometimes I feel like I have no control of anything anymore.  My entire right side of my body is in constant revolt, I cry sometimes for little or no reason because I’m low on dopamine, my house is a mess, my tires need to be rotated, my cane in starting to really hurt my hand because I rest so much of my weight on it when I walk, and it ticks me off that I can’t paint my bedroom.  I feel like any time I post about PD I either sound whinny or ultra upbeat like a cheer-leader.  Neither really relates to how I feel.  Honestly, I am getting to the point where I don’t remember how it felt to walk without a limp.  Oddly, that’s a comfort.

I wish I was a writer.   I guess that comes from being a reader.  Instead I’ll settle for the occasional blog post.

I recently told someone that I don’t write on my bad days.  Looking back over my blog, I realized that I do write occasionally on the bad days I just don’t explain what is going on.

So, I’m having a few bad days.

The reasons are many and varied.  I’m having trouble sleeping which makes me tired which agitates my symptoms.  I’m sick of the financial problems I’ve had for the past year and even though I can see the proverbial light at the end of the tunnel I’M SICK OF BEING BROKE ALL THE TIME!  I cannot seem to shake this head cold that I have had for three weeks.  I’m cranky and short tempered all the time.  I snap at my husband and mom all of the time.  I want someone else to be responsible for a while, to take care of dinner and cleaning the house and laundry and grocery shopping and holiday arrangements while I go away and lay on a beach with a pile of books for a while.

The thing is, I would imagine that most people have days or weeks just like this.  The difference for me is these normal life frustrations build up on top of the reality of living with Parkinson’s.  I told my friend that “I tend to not post at all on bad days and avoid telling the uglier truths about how HARD everything is. Simple things that, four or five years ago I didn’t even think about when I did them now take major concentration and effort. Nothing is ever easy anymore. I am beginning to forget what easy feels like.”

I’ll get over it.  I’m not a glass-half-empty person.  The weather is supposed to be sunny and warm all weekend and there is baseball and hockey to watch.  I might sit outside and listen to music.  Maybe I’ll grill something and buy some wine.

But I guess I should clean the house and start some laundry first…

I think we’re just gonna to have to be secretly in love with each other and leave it at that, Ritchie.

-Margot, The Royal Tenenbaums

I haven’t exactly been enthralled by the press coverage of the up-coming royal wedding.  I actually have no interest at all in the strange political and social around the British royals.  I think that the feudal system has been dead for a while and I don’t understand keeping a powerless monarchy around just for fun.

BUT…one of my earliest memories was my mom waking me up in the middle of the night to watch Diana and Charles get married.  I was young, four and a half or five, but I remember the dress and all the ladies in the church wearing fantastic hats.   Curled up in a blanket early in a Denver morning I watched a future king marry.  It was dreamy and romantic and the couple looked awkward and shy.

I don’t work on Fridays so tonight I’ll probably wake my mom up at 3 am and we’ll watch the wedding.  We’ll be drinking coffee instead of hot coco this time, in Conway, Arkansas rather than outside of Denver, thirty years older, but able to share another royal wedding.  Then, rather than partying like the residents of London we will crawl back into bed and sleep.

I bought some sun dresses and a pair of Tom’s today.  I hardly ever buy shoes because of my foot issues.  My “bad” leg/foot is no longer able to wiggle or curl it’s toes making flip-flops and most other sandals definite no.  I also cannot wear most slip-ons for the same reason.  I can’t wear heels or even shoes with a thick sole such as common tennis shoes.  So the Tom’s, earth-friendly shoes that donate a pair to a child in need?  Well, when I realized that I might actually be able to wear them it was heaven!  I was so excited about my purchase that my husband went and bought a pair for himself.  New sun dresses and new shoes.  Does it get much better than that?

Oh, and there’s college baseball on the radio and MLB on the TV.  I love spring!

Quotes-

"And music will save your life. It's religion. Treat it that way." -Bob Lefsetz
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."A poet who reads his verse in public may have other nasty habits." -Lazarus Long from Robert Heinlein's "Time Enough For Love"

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