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.

Later a full update

...but for now a blip from yesterday.

Call it a 'captured memory'.

On the latest Pyrates Royale CD is a song called "Our Boat". It's a take off of "Our House" by The Beatles. So during the bridge (where everyone sings la la lalalala la la) Skivvee sings something else.

What could this be?

I couldn't hear because although he has a wonderfully deep voice, the higher tones are drowning him out.

So - in my most alluring pose (and voice) I ask him what it would 'take' to get him to tell me what he sings at the bridge.

You would've thought I asked a 5 year old to show me his toy car collection. The seductive pose was blatantly ignored (I'll tease him about that later) and I heard more about the book Two Years Before The Mast (by William Henry Daley) than I'd EVER heard.

(funny side note - yes Jon has read it. I'm surrounded by geeks *snicker*)

Anyway ... he sings this part where the captain is dressing down a crew member who was asleep on the watch and denies it.

Yes he proudly sang it for me.

All I can say is - in all honesty - THAT'S SKIVEE .........

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

From the annals of Harold

I have to smile sometimes.

When I"m just bone weary tired - dragging to the point that going on seems rather pointless - music is my sole refuge.

Today Harold's rather eclectic mix included:

Love Grows (where my Rosemary goes)//Edison Lighthouse
Everytime I Think Of You //The Babys
Southern Cross//Crosby Stills & Nash
Please Go All The Way//The Raspberries
Frankenstein//Edgar Winter Group
Wishin You Were Here//Chicago
Layla//Eric Clapton
Thunder Island//Jay Ferguson
Baby I Love Your Way//Peter Frampton
Feels Like The First Time//Foreigner
The Stroke//Billy Squier
Don't Fear The Reaper//Blue Oyster Cult
Take Another Piece Of My Heart//Big Brother and The Holding Company

....yeah - Harold is nothing if he's not eclectic.

Oddly it helps. After the last month I need all the non alcoholic help I can get.

Can't sleep clowns will eat me

Ok so maybe not the clowns but sleep? Please.

This will sound judgemental, harsh, and unbelievably childish. All I can say to the critics is you've not lived my life with this person - I HAVE.

Mother.

One of my earliest memories is she teaching me to pull the stool up to the hanging wall phone (rotary back then) and telling me to dial 0 for the operator if I came home and found her asleep on the floor with a bottle of pills or if she was in bed and I could not wake her up.

Judging from the fact I couldn't read yet it's a safe guess I was around 3 give or take. This wasn't the first time. I was taught to drive for when she had a 'spell' and would pass out behind the wheel. I was 9.

My life has been to serve her needs when she needs and be absent (but available) when not. She currently lives with my husband and myself because she sold her house and had previously lived with HER parents but her mother died and her father in essence kicked her out in favor of an assisted care living situation.

So - she moves out with me. It wasn't going badly until this year. Ok we had the typical fussy high maintenance stuff that goes with life with Ma - the competition with the children - the drama over her long distance phone relationship with her first husband (a blog for another time) - the normal stuff with her.

This year, however, she upped the ante a bit. On Friday the 5th of October she came downstairs (quite agiley I might add - that comes into play later) and said "Steph (side note - the winds ne'er blow well when she calls me steph - it's either to insult or to dramatize) we have a problem. I had a stroke Wednesday night". OK I'm thinking "really?". Then she baldly states: "oh damn you're going to miss faire [MDRF]". I'm thinking ahhhhhh so THIS is where this is going. Anyway so I talk to her for a bit while I attempt to get ready for work and tell her to call her doctor. At 9 a.m. she calls me to tell me she called an ambulance. Seems as though when she called her doctor HE was under the impression she lived alone. Charming. OK so yes she had at some point had a light stroke (possibly) and was admitted for 5 days (until Tuesday the 9th) because she 'wobbled' for Physical Therapy (as she told me - "I wobbled for them just a bit") and insisted on self-medication (never a popular thing with hospitals.

--side note #2 - I had scheduled oral surgery for myself for the 24-26 of October. It had been scheduled since way back in September.

So she's now out of the hospital and charmingly has scheduled her tests and physicians appointments for - yep you guessed it - October 24, 25, and 26th. OK so I saw that coming and we've worked around it.

Monday October 15th. "Steph - we got another problem. My tooth is broke and hurts. Its EXCRUCIATING." OK so I schedule an emergency dental appointment for her for that Monday. She has such a fit in the office that they refuse to touch her (telling various people she'd just had a stroke and could barely walk, her blood pressure was 'high erratic' and her doctor knew another stroke was on the horizon yadda yadda yadda). So they schedule her for the oral surgeon the next day. At this point she has thrown herself from the chair, is on the floor on her knees, and screaming. I'm nonplussed what to do. I pick her up, pay the dental fees, and take her home fussing all the way. Anyway on Tuesday the tooth is extracted and she has pain meds etc sent home with her.

More nights no sleep.

Fast forward to today: "Steph we have a problem". *sigh* "My first BM since the surgery [she meant tooth extraction but ok] and it's black and sticky. Those antibiotics are making my stomach hemmorage I just know they are." *sigh* I read it in my book they would do that. *sigh* I give her the standard schpiel - call your doctor yadda yadda yadda. She tells me "Well now I know it's the last weekend so I WANT you to go to faire ... even if I am in the hospital ... even if they do SURGERY ... EVEN IF I'M IN ICU. Oh and you HAVE to have your dentist appointment on Wednesday. Well you just do that and don't worry about me."

Anyone else see where this is going?

So now it's 6:35 a.m. = I came in extra early because I know I will be going home to rush her to somewhere where she will laugh and entertain or possibly scream and cry and tell people 'Good Old Steph' without a thought of anything or anyone.

Sound childish? Sound like I"m mean? No it just sounds like Life With Ma.

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.