Profound Words of Wisdom

Don't complain that you have to go to work - be thankful that you can go to work - Sarah Osborne Bugg.

No she wasn't talking about be thankful that you have a job.  Rather - upon our 50th birthdays (hers a few days before mine) she was sharing words of wisdom from her mother.

Her mother was a woman who was thrilled to be able to see 50.  She had been fighting a terminal illness for near to a decade.  She lost the fight a few years after her 50th birthday.

But this isn't about terminal illnesses and the losses they cause.  This is about the ability to work.  See Sarah's mother couldn't work.  She was disabled.

She missed work.  She missed going to work.  She missed being productive.  Heck she missed going out.

That's something I often forget with Jon.  Since he cannot drive anymore and honestly it's just not safe for him to wander about without me, he's trapped.  Trapped in the house.  Trapped in the car with me driving.  Trapped with my decisions.

Thankfully he loves me or else it could be a quick road to resentment.  I cannot say I would handle it better.  Hell I know I wouldn't.  Being perfectly honest, I would probably take out my frustrations - and yes envy - on him.

That would be envy of freedom, of mobility, of choice.

He had an awesome career as a data base administrator.  He could program SQL and COBOL and make databases dance and sing.

Now he greets me in the mornings and watches me get ready for work - my mundane little job make sure people get paid.  He watches TV and reads and watches YouTube on the computer and naps until I get home.  Then he greets me and often has to hear about my horrible day --- probably thinking You Bitch at least you get to get out and DO SOMETHING.

ok knowing Jon he's not thinking anything of the sort but I bet it is still a bit bittersweet to hear about my struggles throughout the day ....

So for today - on this day after our 11th anniversary (and in his 2nd year of full disability) I will try and remember those words of wisdom that Sarah Osborne Bugg shared with me courtesy of her mother.....

Don't complain that you have to go to work - be thankful that you can go to work

***
the photo above was taken last year in Virginia Beach.  Jon was watching the rain .... and quite possibly remembering the times we walked the beaches in rain -- or shine -- and just cannot anymore.  Yet you can still see the smile.  That's facing life with grace and wisdom and integrity and peaceful acceptance.  Oh I wish I could say I would be that amazing ... I know I wouldn't.

2013 - a new year - a new beginning

ok I was kidding about the new beginning except I miss taking photos.  I've bemoaned the last couple of years that Harold hasn't had his camera in hand but a rare few times --- and sadly those have been photos of other people and while fabulous (IMHO) I respect their privacy.

In fact I have one of the best photos of a very good friend that I've EVER taken.

The scales of time - they tend to balance when we're not looking.  For the longest time, Jon was the driving force in our marriage here in Maryland.  He had the great job, the confidence, the power if you will.  Now he is disabled.  While a great many men would bemoan the circumstance and quite probably take it out on their partner, he doesn't.  He throws his skills, his experiences, his drive, behind ME.

IKR?

brb - Parkinsons' ugly head - he's standing on his pants and in a bit of a quandry.

ok I'm back.  Crisis averted.

I found this year for the first time being off Christmas Eve AND Christmas Day and New Years Eve AND New Years Day. While yes I did work part of those days from home - WOW - I didn't have to go to work.

....and that leads to the photo above from the Snowpocalypse.  Not only would I not have to work if that situation arose again, I would not be punished for NOT working.

Jon kept saying if I paid my dues, paid it forward as it were, then good things would happen.

As usual, I think he's right.

though I wouldn't let him know that ;)

Irony - ain't it a blast?

Wendy's - yeah gotta love it.

But onto the irony.  As the fates would have it, we found out around 10 a.m. Friday that Friday (that Friday) would be Jon's last day.  His disability starts Monday.  It was either that or take a demotion/pay cut on Tuesday.  It was a no-brainer and his team lead was very supportive of his decision.

We made plans this weekend to just stay home and heal.  Neither of us felt particularly outgoing given the circumstances.  We're thinking of things Jon can do to keep him from being too bored until he settles into a lesser level of activity.

Enter the irony.  His computer broke.  OK, yes it's an older one.  When I started having to bring work home all the time, we purchased me a new laptop with imbedded 10-key and he took my old one.  It's been not wanting to charge for a while now; picky, finicky, and just plain stubborn.

So thankfully we have the Dell credit and for 20.00/month, we have a replacement one coming for Jon.  He only has to limp long (all puns intended) for a week without it and using mine if he chooses.

Life.  It's funny no?  It's preferrable to the alternative - or so I've heard.

We're still making decisions on whether to hit his 401K and pay off the smaller bills leaving only the utilities, car payment (thankfully paid off next year) and house payment.  Sadly, we shall be selling Baby - my 2002 Jeep Wrangler.  She has 100K miles and honestly, Jon cannot even ride in it anymore, let alone drive it.  Sad because she was the first brand new car I ever picked and paid for.  Then again, she's a bit of a gas hog and his malibu - while I don't care for it - is more commuter friendly.

Sucks being an adult don't it?

I took that photo earlier this year.  He's not hiding his face - he's gathering balance to get up and out of the car.  If fortunes allow, when it comes time to trade in the Malibu, we shall look for a small sized SUV which is large enough for him to comfortably ride in yet small enough not to be a gas hog.  They're easier for him to get into/out of.

Staking my claim

I am hereby reclaiming my life.

I cannot choose how others act but I can choose how I re-act to their actions.

I cannot always choose the circumstances, but I can choose to adapt to them.

I have the power over how I feel.

*******
I've been slacking off recently, not going to the gym and not watching what I eat, all in the guise of "well I've been depressed." Guess what? That's Bullshit. Yes some things have happened recently. Some of them have been posted here. Some have been posted elsewhere. Some just conveyed quietly to friends. Still other things I have been quietly attempting to deal with on my own.

So yes it sucks - majorly - many of the things that have happened in the last few years. However, I have my health, I have my job, and dammit I have my choices.

Henceforth, I will be responsible for myself and my choices.

I choose:

• To watch what I eat, when I eat and more importantly what I eat
• To excercise with some semblence of regularity because it makes ME feel good
• To attempt to learn a new task or skill each day
• To live without the actions of other affecting my behaviour
• To live without fear or regret
• To understand that Jon's disease is just that - his disease and his responsibility
• To focus on the positive
• To understand each new day is just that - a new day; a new beginning.

So that's that. Sometimes it just has to be said. Sometimes it has to be read.
Sometimes it just has to be.
*****
I took the photo above last year in Washington. The city squirrels are afraid of nothing. That chutzpah is something I rather admire. Perhaps I should take a page from their book eh?

Why is it 3:30 in the a.m.?

...and what am I not in bed?

The answer to that is simple: snoring. Mine? no.

It's been just my fortune to not only have a spouse with Parkinson's but one who snores and snores LOUD. Loud enough that when I'm upstairs with the door shut and the television on I can still hear him. In bed? Oh please.

Sometimes I almost expect the neighbors to call.

So I'm often up and awake at ungodly hours because I cannot bring myself to forbid him his bed. I'm often up and awake because the noisy darlin just can't seem to understand how loud he is. After begging for years for a sleep study, I've finally given up and simply greet the dawn with a yawn instead of a smile.

Yes it's 3:30 a.m. and now it's coffee time -- dawn is just around the corner.

*****

the photo above is from Spoutwood Farm in Pennsylvania home of the PA Fairie Festival. The early morning mist reminds me of dawn breaking in the mountains.

Can you hear me now?

I just posted a comment on a friend's blog about dubbing and subtitles. I matter-of-fact stated that since I tend to have the television on closed captioning much of the time, I do better with subtitles.

I never dreamed it would come to this in my mid 40s though. Wait - not even mid 40s.

As I sit here this morning, listening to the ever increasing ringing in my ears (tinnitus), I'm reminded I've gotten quite good at little tricks and things to mostly keep this from everyone but Jon. Poor Jon -- the Parkinson's and the Parkinson's drugs tend to affect his speech. Sometimes I need sharp clear annunciation (with clear facial movements) to understand. Unfortunately, now he slurs ocassionally and his facial movements sometimes are a little soft and sluggish.

Can you hear me now?

In the chaos that tends to be my life, I have to laugh at the oddity. I have an IPod that I just received but haven't set up yet. Me - who lives in music - yet it sets nearly blank.

What if it's like my hands free cell phone feature? what if either I can't hear it or it causes pain when I can get it loud enough to hear.

Wouldn't life be wonderful if music could be closed captioned instead of just little music notes and an announcement that it *is* music?

Wouldn't it be the best if the fates didn't have a wicked sense of humour?

***

The photo above was taken summer 2006 @ The Virginia Renaissance Festival. Gary Schwartz is a gifted musician/composer who specializes in period music.

A little murder, a little mayhem

...a little mystery?

Last night Jon and I went to Whispers for a dinner/murder mystery. It's not quite the 'last night I went to Manderly again' but then again I'm not a writer.

heh

I will admit it was wonderful to be out of the house and recapture some of the romance that has defined our relationship since its inception. We talked, we laughed, we discussed some subjects that were a bit overdue.

As for the dinner theatre: the food was ok, the plot was a bit strange, the characters were wonderful. Seriously it was like Old Home Week with "oh there's Tina, there's Brian ... is that Cybele?" Of course Jon recognized her first as I cue in on voices and that's makes recognizing your favorite mime - sans white makeup - more than a bit difficult.

The whodunit is something I will possibly forget in a few days. The warm feelings from seeing friends and spending time with Jon will be something I"ll remember for a long time.

Yes we'll definitely be back.

In search of Zen ....

...or at the very least some form of balance.

I said before that my anchor was gone. That's not entirely correct - I seem to always have an anchor. Maybe I'm self-anchoring? It's more like my 'balance' has been disturbed (for lack of a better term). In a strange way to visualize it, picture if someone reached into your aura and just gave it a quick stir. The colors aren't balanced; the energy is off.

Someone mentioned "I wonder which gods YOU pissed off". That led to a rather lively discussion with Jon about the fact that mine and his have both developed a sense of the macabe - perchance there's a 3rd? Harold was pleased at that thought.

Perhaps though ... just possibly ... this is a cue to re-embrace my (our?) spirituality. It gets interesting however since we're in a mixed marriage - Wiccan/Christian (I'll let you figure out which one is which) but we also support each others individual beliefs so it works.

To quote a rather more famous muse: "...it doesn't matter what you have faith in, just that you have faith." Serendipity//Dogma I like that.

----a quick note about this blog: this one is mostly for me. As such it won't make much sense ... anymore sense in fact than it's name which yes Harold chose.

Whine Whimper

bitch moan complain

I blame the cosmos

So I was doing a weekend roundup (yeeehawwww) of just what has gone on in the last 3 weeks and here it goes:

*Mom rushed to the hospital probable stroke
*Jon has Parkinsons
*Mom has emergency tooth extraction
*Jon discovers issues with his Mom's estate
*Mom emergency doctor's appointment (false alarm)
*My oral surgery (and the rather disgusting lisp I have obtained)
*Mom's insurance really screwwed up ('nuff said on that one)

This is just since the first week in October. Is there a wonder I'm not sleeping at night?

Yes I know it will get better...it HAS to.

I am finding a rather macabe sense of humour about the entire situation - I just tell people that clowns are the least of my concerns.

heh

An unusual state of mind

Or should that be an unusual state of mine?

I all but closed my main blog on 360. I felt I needed to focus my attention and time on Jon. Also, I found it quite difficult to blog to readers about anything when the thing in the forefront of my mind still is his condition and how we're coping.

I still cry when I talk about it.

...but I digress.

Anyway, I got a few unhappy people after I removed all but 13 (including my alternate) from my friends list and locked my blog and quickies to friends only. I did that so that when Jon is comfortable talking about what is wrong (if ever) I will have that blog for moral support as it were.


I know there will be a parallel drawn for many but to me it's not the same. Either way that is the way it is pretty much. Mine is a choice for a different reason: currently that diagnosis affects literally everything I think about. I am a plan for the future kinda gal. I'm finding myself rethinking EVERYTHING.

I hope this too passes with time.

I hope the driving desire to go to ground like a small wounded animal also passes with time.

I hope one day the tears pass.

I hope one day the tears cease because I've come to grips with this - not because there are literally no more tears left to shed.

Celebrating the day

Today is the last day of MDRF for the season. In a record breaking move, we've actually missed 4-6 days out of 19 this year. I vowed it would not happen again.

We missed Oktoberfest
We missed a very good friends proposal
We missed people down for only one weekend
We missed some of the best days of faire.

---basically for naught. Especially missing yesterday which was - according to her doctor describing the emergency office visit - "totally unnecessary".

We will be going today. I will celebrate this day with my husband knowing - as always - there's a risk this might be the last time he can enjoy faire.

I know the anger isn't healthy and doesn't do any good but dammit the escapades of a teenage (70 year old) drama queen is robbing me of precious time with my husband.

Today however I put the anger aside and celebrate an unusual 78 degree Autumn day.

Johnny Depp at 2:30 in the blessed a.m.?

ok anytime is a good time for Johnny Depp *weg*

So you might ask what I'm doing awake at 2:30 in the a.m. - drinking beer and eating pizza - watching Johnny Depp - the same 2:30 in the blessed a.m. that is the 2nd to the last day of faire - the same faire I look forward to each and every year.

You could ask.

It would appear that as soon as my husband left Mom alone for a moment yesterday, she ran and called her physician to schedule an emergency doctors appointment. Was it for yesterday? oh nay nay

For today. At 9 a.m.

Her prescriptions are scheduled to be picked up @ 5 p.m. Yesterday? nay nay

Today.

Saturday.

The 2nd to the last day of MDRF - the last WEEKEND of MDRF.

I set and look at my bodice knowing it won't be worn. I look at the DOW dress I borrowed knowing more than likely it will not be worn either.

I bemoan the fact that pictures weren't taken this year.

I know that each day, each month, each moment that passes, Jon's condition worsens. I wonder what will happen if this *was* his last year at faire?

I wonder how I will forgive the self-important drama queen if she's robbed me of a last season with my husband. She has currently kabashed any out of town trips and vacations. She has dictated - by her actions - where we dare to go and when we dare not. We have missed many days this season.

I only hope - for her sake - that there are many more seasons ahead.

Each day is a gift. Each day should be lived - not served.

I am currently serving - not living.

at least Johnny Depp is still cute

Little did I realize

Yes ok I'm a bit oblivious at times. Everyone who knows me knows that. I can remember something so delightfully obscure that people questions its veriest existance and I can totally miss the most obvious of nuances.

Call it a gift.

Little did I realize when *something* - one of those somethings that I always listen to and invaribly regret when I do not - when that same something told me "keep blogger private" that it was speaking for a very important reason.

I'm now glad I listened. One day I might give this address out. I figure if people find me its for a reason. If not then maybe this will avoid some therapy bills eh?

*******

Yeah end of segue

*******

I will thenceforth (is that even a word? Please Stephanie) use this blog for the very things I need to get out but cannot due to privacy issues. Job. Family.

Jon.

Parkinsons.

It still gives me chills and brings tears to my eyes to write both of those words on the same page.

Jon. Parkinsons.

The symptoms were there but the very obliviousness that I think helped me survive my childhood sadly enabled me to ignore the most commonplace things: he had a tremor and stiffness both. Parkinsons. He got tired and shook more. Parkinsons. Difficulty swallowing. Parkinsons. Difficulty walking and balance.

Parkinsons.

The most obnoxious facet of this disease is you can't diagnose it. It's basically what's wrong when everything else has been ruled out. Well it's not a brain tumor, it's not a stroke, it's not Bells Palsy, it's not Dropsy or epilepsy or anything else so it's Parkinsons.

Part of me is so very angry because I actually *did* think this is what it was so many times. However we didn't plan quite right and got a diagnosis without getting life insurance first (can't now) or long term care insurance (nope to that one too) -- in essence it's like this disease has turned my life upside down without even asking me - and I'm not even the one afflicted.

OK yes that's childish and in truth I *am* going through the stages of grief (it appears I'm at anger at this point) even though he's still quite alive and will be (god willing) for a loooong time.

I am simply mourning my dreams.

Dreams of *us*

Dreams of old age and rocking chairs and peace instead of dreams as once again I will become a caregiver except it will be to one of the most important people in my life.

What if I don't have the patience?

What if I don't still have the skills?

What if I just can't?


The hardest part is I *need* to talk but he's not ready to. Not yet.

So I wait. And write. And watch.

A silent vigil begins, begging to rally against the fates when it's just one of those things that just happens.

One of those things that I just can't fix.