The Greatest Gift, Part 2

I mailed the birthday card on my last day in the office before The Awesome Husband and I left for vacation.  This was intentional ... if I'd done it sooner, I knew I'd be watching the mail carefully (likely TOO carefully) for a possible reply and would, no question, slowly drive myself to wonder if I'd made a mistake by reaching out at all.  I *HAD* let her Christmas card go unanswered for 6 months after all.  It was totally possible that I'd missed my opportunity.

We started by visiting my parents and largely avoiding the July 4th holiday.  The next morning, we drove to Monterey, stowed our bags at our hotel and visited the touristy places.   I'd remembered a specific on-the-wharf place that had amazingly tender squid dishes, and we found it with very little trouble.  The service was great but, sadly, the food was not as good as my memory told me.

We were driving back to the hotel when The Awesome Husband saw a storefront that he wanted to take a photo of.  One of the major dinners we'd enjoy while on vacation was in Yountville at a private outdoor table at a well-known destination for food-lovers - The French Laundry.  The storefront that had been spotted in Monterey was the Del Mar French Laundry and a far cry from where we'd be dining.

The Awesome Husband asked me to pull over and I managed to drive behind the rather dilapidated building and waited while he walked around to the front to take the picture he'd upload to our fellow diners, as a laugh.

I must have been charging my cell phone because when it rang, I didn't have to hunt for it.  I checked at the display to see if I knew the caller and ,while the number was unfamiliar, the area code was not.  I answered it right away, figuring it could be any of the hotels we would be saying at, restaurants we'd be visiting or (possibly) the REAL French Laundry calling to ask about a few special requests I'd made on the sly to surprise The Awesome Husband as a belated birthday gift.

"Hello?" I answered, in my best business voice.  "Hello - Julie?  It's Karin."

My throat tightened and I blurted out "my God it IS Karin!  Happy Birthday, Karin!!!"  In true fashion, she brushed off that it was her birthday and wanted to know - honestly - how I was doing.  She didn't specifically ask about my Parkinson's, but I knew that's what she was asking.  In the flurry of conversation that followed, I learned that her oldest daughter was a teenager, that her parents and siblings were all visiting per her father's request for his 80th birthday and she was hoping we had a spare space in our travel plan to visit them.

It was about this time that The Awesome Husband came walking around the corner, having successfully taken his photo.  Karin and I came up with a plan for a visit Sunday morning, and as we said our goodbyes, the tears started to really flow.

Oh it was just awful.  I would *just* start to get it together, and then I'd think about how much time I had wasted, how much of a coward I'd been, the amount of pain I'd caused ... and I'd be right back to being a big, snotty mess.  For those of a certain age, you may think about watching Mary Tyler Moore on the Dick Van Dyke Show, where she played the part of Laura Petrie.  Laura had a cry that was funny to watch but  heartbreaking to listen to.

And it wasn't just the 6-minute drive back to the hotel.  It was literally HOURS.  We'd be unpacking or researching our next location to visit and I'd feel this wave of guilt and love and forgiveness and ... it would start all over again.  So my hope was that I'd get myself composed over the next day and a half.  It'd be nice if I wasn't a total basket case when we visited.

The Greatest Gift, Part 1

I won't do this justice.  It may take me several efforts before I capture this correctly.  If (ok, WHEN) I decide to try this again, I'll just name it "The Greatest Gift, Rewrite".  Here goes ...

*************************************

I've always made friends easily.  I can make small talk to break the ice with the best of 'em, and from then on, it's mostly a matter of being interested and active listening.  If we don't hit it off, hey - no harm, no foul.

As for friends who really REALLY know me (and whom I'm not related to or married to), that's another matter.  There's Tim, for sure.  We hit it off immediately and have been great friends ever since.  But even that's not going back to my school-age days.  No, school-age friends would number five.  And school-age friends whom I kept in contact with well after graduation would number two.  And school-age friends whom I kept in contact with until I moved East would number one.

And when I write "school-age", the five would be from high school.  And the "post-graduation" two would be the five from high school minus the three who moved away, got married, went to college or whom I just lost touch with.  And those two?  I have known since Kindergarten.  So for REALLY close school-age friends, we're talking about - no exaggeration - a forty-year friendship.

Of those two, one started making really bad choices and decisions and I was finding myself feeling dread when she'd call.  She asked me to do favors for her that I was pretty uncomfortable with and, when things came to a head one day, instead of being sad at the loss of a very long friendship, I found myself feeling ... relief.  The person I had been friends with for so long had changed so dramatically and became someone I would have likely never wanted to know.

But the other one?  I introduced her to her husband, whom I was friends with in a different circle.  I met their firstborn child when she was less than 48 hours old ... and I held their second child at hour 8.  I had my doubts that our friendship wouldn't change with the addition of her having children - and yes, it DID change - but we could still be our goofy selves.  We could still have talks on the phone (something a lot of parents simply cannot achieve due to the constant interruption of a child in need).  She was still interesting and funny and had interests that didn't involve children.

So when it came time for me to move, I spent the days packing or shipping or finding bubble-wrap and crafting, in my head, a way to somehow say I was leaving.  And - I failed * every * single * time*.  It wasn't as though we talked every day or saw each other every week ... but the idea that I wouldn't have the ability to see her at the drop of a hat made me feel ill.  And when the time came?  I chickened out.  I bailed.  I slunk away and when I DID finally call to say "hey - new address!!", I hung up afterwards knowing I had deeply hurt my closest friend and would likely never hear from her again.

When Christmas arrived a few months later, I received a card from her parents ... but not from her.  I sent one, holding out hope that I had simply misread her reaction to my move - and my not telling her face-to-face about the move - but deep down, I knew what she likely was feeling.  After all, 35 plus of friendship had BETTER teach you how to read the other person.

And then life got complicated.  The search for employment took about 11 months longer than I'd expected, the Awesome Boyfriend became the Awesome Live-In Boyfriend, I became employed again but needed to learn a whole new sector (from technology to education), and - just for added drama - there was, of course, my Parkinson's diagnosis.

Each year, without fail, I would get a Christmas card from her parents with a note that would say something like "hope you're doing well", or "haven't heard from you" or "miss your updates" ... but what was I gonna say?  I'd send them a card, too, but .... well how would YOU write "love my job, gonna get married, have Parkinson's, happy new year!"?  So I simply would write my name and send it off, knowing they deserved better.  Knowing she deserved better.  And there I was - in the foreign situation of really not knowing how to break the ice.

Christmas 2012 came around and, out of the blue, I opened a photo card to see the smile I'd known since walking into Mrs. Denzer's Kindergarten classroom.  I stared at the card, studying the familiar ornaments on their tree (knowing she was alright with random decor placement but that such a thing would keep him up at night) and, still in a daze, flipped the card over to see a whole page of text!  Ages and hobbies of children, vacation news, job updates, boards and committees she was on ... not personalized to me but I drank it in, sat back, and ... cried. I still didn't have any way of writing "love my job, got married, have Parkinson's, happy new year!"  I made a mental note to reach out when I was able to write something informative, sensitive, comprehensive, and not pity-inducing.  This was gonna take some time.

It would take me six months to work up the courage, and two hours to write a Reader's Digest of my life without her in it.  With our birthdays being 12 days apart and with Summer Vacation looming, I purchased a card, folded my two-page letter (which I boldly included my email and phone number and a note we'd be visiting my parents for the next two weeks), sealed the card, and dropped it in the mail.  I went home and packed for our travels, not mentioning to the Awesome Husband what I'd done, so as to save myself from any embarrassment should she not call or write.

My Family Tree Must Have Knotts

This was the year we weren't going to jam.  Last year - we couldn't possibly duplicate that effort.  Over 40 flavors and more than 420 jars ... *whew*.  Sure, we raised something like $2,300 for the Parkinson's Disease and Movement Disorders Center - I'm VERY proud of that - but still, 2013 was gonna be our year off.  We even booked two weeks of travel that involved the weekends we traditionally jam.  2013 - Travel.  NOT Jam.

I blame the visit to the open air market.  And the plums that were there.  They were ... perfect.  Deep color, no soft spots, amazingly fragrant.  I can't speak for the Amazing Husband but that's when I started to crumble.  My own mother was of no help.  "The Blackberry Vanilla.  Definitely my favorite.  Looking forward to more of that next year."  Terrific ... THANKS Mom.

We returned home (after astonishingly good AND not-so-good meals, overwhelming kindnesses by total strangers and a renewed friendship ... I'll write more about those experiences in due time) and unpacked.  The plums weren't foremost on my mind, as there was plenty to be done that DIDN'T involve jamming.  Like - sending jams to old dear friends.  The packing, wrapping, labeling .... all second nature really.  And heck, we HAD jars still from last year.  We had flavorings.  We had everything but fruit.

"Ok well", I started, "we can make Blackberry Vanilla and ... and ... maybe Strawberry something.  Nothing overly detailed or messy.  Strawberry Pomegranate, maybe."

And then there was the purchase of more jars.  "I picked up 7 more packs", said the Awesome Husband.  I was just as bad, managing to buy 6lbs of cherries when I went to the store (forgetting the lemons I had intended to buy in the first place).

Soooooo this last Saturday, in the year we WEREN'T gonna jam at all, we made 5 flavors packed away in 52 jars.  And today?  Today when I was gonna lay low and try to let my body adjust to new medications and crappy sleep cycles and boring days at work?  Today I purchased 12 more packs of jars (plus 2 packs of quart-sized ones ... ya' know, just in case).  And I noticed my local farm has announced the arrival of peaches.

I think I should research my family tree ... see if there are any "Knotts" or "Smuckers" in it.

Newsworthy?

Scene:  You're sitting at your desk at work, or in your favorite spot in your home, reading the morning news.  The headline that grabs you reads

"Guy: 'Incredible' support"

Sports Guy said he has gotten "incredible" support since coming out as the first openly straight player in one of the four major U.S. pro sports leagues, and hopes he may have made the path easier for others to follow.
 Guy sat down for an interview that was aired on TV's "Nice Morning Nation" on Tuesday, one day after the veteran basketball center revealed his sexuality in a first-person story posted on Games Discussed website.

"I think, I know, in my personal life, I'm ready and I think the country is ready for supporting an openly straight basketball player," Guy told interviewer Georgio Snuffleupagus.  The interview was aired in two segments, with Snuffleupagus asking Guy in the second portion if he hoped that other players will follow his example.  "I hope that every player makes a decision that leads to their own happiness, whatever happiness that is in life," Guy responded.  "I know that I, right now, am the happiest that I've ever been in my life."  Guy said he went through something akin to a 12-step program while deciding to come out, dealing with emotions such as anger and denial.

"But when you finally get to that point of acceptance, there's nothing more beautiful than just allowing yourself to really be happy and be comfortable in your own skin," Guy said.

Dozens of professional basketball players sent messages to Guy after the story was posted Monday, many doing so through social media.  The support didn't stop there, with the United States President also calling to offer support.  "It's incredible. Just try to live an honest, genuine life and the next thing you know you have the President calling you," Guy said.  "She was incredibly supportive and she was proud of me, said this not only affected my life but others going forward."

Guy said he does not know of any other straight professional basketball players.  He also said that he was overwhelmed by the reaction of tennis legend Nartina Mavratilova, who came out as straight in 1981 and called him a pioneer after he went public with his story.  "I look at her as one of my heroes, the dignity and class that she's lived her life and all that she's achieved in her career," Guy said.  "She is my role model.  Hopefully going forward I can be someone else's role model."

Guy averaged 1.1 points this season for the Massachusetts Scots and the DC Worlocks.  He will be a free agent this offseason, and plans to continue his career.  "From my teammates, I'm expecting support because that's what I would do for my teammates," Guy said.  "A team is like a family, a brotherhood.  And I'm looking at it like we all support each other, on and off the court."

Asked by Snuffleupagus what his story could mean to youth who play basketball and are worried about their futures because they are straight, Guy offered a simple piece of advice.  "It doesn't matter that you're straight.  The key thing is that it's about basketball," Guy said.  "It's about working hard, it's about sacrificing for your team.  It's all about dedication.  That's what you should focus on."

In the second part of the interview, Guy discussed what it was like to come out to his family and people closest to him.  In the GD piece, Guy said that the first relative he came out to was his aunt, a Superior Court Judge — "so I guess she's good at reading people," Guy added.  "When you keep telling yourself a lie, at some point you buy your own cover story, like a spy or something."  His own twin brother had no idea about his brother's orientation.  "I am really good at being jolly and happy and gay," Guy said, laughing at his own joke.  "Maybe he needs to hang out with my aunt a little more, get a discerning eye like she has."

Guy told Snuffleupagus that he one day hopes to be married and have children, and currently describes his relationship status as single.  "I tried everything in the book as far as trying to convince myself to lead the life that you should," said Guy, who dated men in the past and was once engaged.  "Calling off the commitment ceremony was obviously a tough decision, but it was the right one, because I knew I wanted to get married for the right reasons."

*************

 

Not newsworthy, right?

My point exactly.  Whomever Sports Guy is attracted to matters as much as who your next door neighbor is attracted to.  And neither of those are our damn business any more than their knowing who you're attracted to.  And none of that reflects on who I'm attracted to.  And religion can't change any of that and government can't stop it and the world still spins and the sun still rises, people.

 

When ^that^ is accepted, understood and practiced?  THAT will be the newsworthy item.  THAT will be the headline.

Measured in Moments

Seeing you stand, against the railing of the escalator, waiting.  Not in the crowd, but somewhat further back.  Checking for a familiar face  - catching a glimpse of the me you thought I'd be.

Holding you there, just for a moment.  Everything stopped, and then full speed ahead. Getting my bag. Sitting next to you.  Finally.  Meeting your family.  Knowing your stomping grounds.  Seeing your history through your eyes. Talking.  Laughing.  Crying.  Staring.  Watching.  Falling into the ocean.  Sleeping.  Sighing.  Sharing.  Listening.

Our life together is not measured in minutes but by moments.  We have already had so many.  We'll have thousands of thousands of thousands of thousands of thousands more.

Bring it on.

The Yesterday That Wasn't

Yesterday should have been wonderful.  Light-hearted.  Joyful.  Centered around family.

Yesterday all fresh hell broke lose.  Oh, and my family certainly helped.

Yesterday, February 28th, was my parents golden wedding anniversary.  Not many folks manage to make it to this milestone, and there were times when both parties wondered if they'd get here ... but they did. So it is reason to celebrate.  I used my trusted florist and we sent 50 roses of all kinds of color to my parents, who were so pleased that they'll be sending us photos.

Yesterday was also the anniversary of my second year at my current place of employment.  And I really like where I work and what I'm doing.

Yesterday a member of the extended department did something SO damn dumb and SO lame-brained that I really, quite honestly, wanted him fired.  (And, honestly, I still do today.)  This is a power I do not have in my position but still.  This particular individual believes his educational history gives him superiority and he never fails to belittle and/or talk down to those who are TRYING to assist him and yesterday, he screwed up so big *and* failed to own up to it that I really don't know if I'll be able to hold my tongue when I see him next.

Yesterday my work day ended and, as I drove home, I listened to a voicemail message from my sister - a woman who never hesitates to point out her incredible communication skills and tact - and the message pissed me off so badly that even my commute time home wasn't enough to calm me down.  She managed to tell me what had happened without actually saying it.  It was something like "so I guess you know, but if you don't, call me and I will fill you in, but if you already know you don't have to ..."  It made me yell into the traffic with frustration and disbelief.

So yesterday I came through the door of our home and greeted my husband with a verbal vomit of venom.  "Hi.  My Uncle Denis probably died last night.  And one of the department managers had a team member who had items stolen from his desk and, for reasons I cannot fathom because we're all so stupid compared to him, he decided to NOT call Security OR tell the administration.  And my sister is an insensitive moron and no, I will NOT be calling her back."

And, sadly, my Uncle Denis did pass in his sleep sometime during the night.

Yesterday my own Father, a man I love dearly but who has the emotional maturity of a six year old when it comes to family grudges (a trait I'm told he inherited from his father), left it up to my Mother to drive to my Uncle's home to wait with the Sheriff for the proper individual (the person my Father is avoiding) to arrive to ID the body.  On her 50th wedding anniversary.  Neat, right?

Yesterday leaked into today with my sister calling me to say that she's heard from a reliable source (a Cousin whom I'VE never thought to be reliable for anything other than being a drain on his father's patience) that my Uncle's will wasn't what he always said it was and that she was upset "for both of us" that we wouldn't be getting anything tangible to remind us of our Aunt.  (and I reeeeeeally wanted to say "yeah - that's NOT why I'm upset" .... but I didn't.)

"Oh", she added, "I  heard the flowers you two sent were lovely."

Is It Me?

It's been a month of "just" being on my Selegiline.  Each twitch, quiver, shake, shiver ... each cramp or tilt or swerve makes me wonder ... is this new?  Is this a decline?  Is this normal ... or is this MY normal?  Am I losing weight because Winter is fading and I'm eating less or am I losing weight because I'm eating less due to a loss of appetite (a PD Symptom)?  For crying out loud - isn't ok to just not be hungry anymore?!?

There's no way to know.  Imagine if, once a week, you had to report in depth on ...... how your teeth felt.  Are they feeling cleaner today than last week?  Are the spaces in between the same or different?  Is your jaw tighter than it was last Tuesday?  Do things line up the same?

For my PD, that's kind of how it feels when I notice, for instance, that I sit in my chair with my feet flat on the floor and use them to swing my chair left, then right, then left.  Is this a new thing I'm doing?  Am I doing it because I'm AWARE I want to be doing it - or is this a new symptom?  Did I do this last month?

In happier news, the one driving me crazy with all this is me.  The Awesome Husband is either keeping his concerns to himself and/or realizes that anything he's noticing about me I've already noticed and am already wondering about.  Our daily life is wonderfully, marvelously un-large-eventful.   My diagnosis does not consume either of us ... it just simply is there.  It isn't ME.  It's a small part of who I am today and may be a part of who I will become ... but it's not now and will never be all of me.  It is also not us.

I will always ... WE will always ... I dearly hope, be more.

...And Now The Real Test Begins.

I visited, for the last time for awhile, Dr. M yesterday.  It's hard to believe that I've been in his testing program for 44 weeks already.

Dr. M is part of a group of Neurologists conducting a Phase II double-blind study of an already-FDA approved medication that may - or may not - slow or even halt the progression of Parkinson's.  Dr. M's recruitment for the study went very well, but a few of the other nationally-based doctors didn't have as much luck so, while I'm done with the testing period and interested to know what conclusions have been drawn, it will likely be another year or more before that happens. And I likely will never know if I was even ON medication.  Since it's a double-blind study, neither doctor nor patient are told if medication has been given or if it's a bottle of sugar pills.  After Dr. M submits his findings from the study, he'll be told which group took what.  Honestly, I'm not all that interested to know which group of participants I was in.  For me, the real test has just begun.

See the study had various parameters to it that meant only a small percentage of PD patients could be involved.  You had to have received a PD diagnosis, not yet be taking Carbidopa/Levodopa (C/L), and be taking Selegiline for more than 8 weeks but less than 8 months.  Those don't sound like 3 large hurdles but, in reading through past entries here, I realize it took me 3 years to even decide to get my tremor looked at by a doctor.  And then I went to a Neurologist a couple of months later.  And, a month after that, I got my second opinion.  At that stage, I was on C/L (used to confirm diagnosis only) and was still absorbing the diagnosis itself.  I started taking Selegiline in November and Dr. M timed my trial to start about 2 months later, so that I'd be squarely in the 3-hurdle window.  A lot of PD patients don't have access to Neurologists who are actively seeking and testing new treatments, so *if* they researched trials on their own (which I'm told about 80% of them do), there's a high likelihood they would already be outside the 8-month parameter.  In fact, if I hadn't saught out that second opinion, I wouldn't have known about the trial because my own Neurologist isn't really active in the "trial and testing" community of physicians.  (That may read as a criticism, but it isn't.  Her employer is not a "teaching hospital", so she's not required - and possibly isn't allowed - to run trials and tests of new treatment methods.)

What all ^^that^^ means for me is that in the ~64 weeks since my diagnosis, it's possible that I've spent 44 of them on medication which slowed or halted my PD journey, and and additional 4 weeks on C/L, which masked my PD completely.  Or, using the same math, I only know what my non-medicated standard rate of progression is based on 4 months - a time period which included my (and my awesome husband's) absorption of my diagnosis, a few frantic weeks of MRIs and EKGs and blood work and telling my immediate family and my coworkers and OH YEAH getting engaged(!!) and planning Thanksgiving for ~14 family members and dealing with the holidays and shipping packages and ... well, honestly I can't say it occurred to me to note every little twitch 'cause we were just a tiny bit busy.  And I didn't realize that I'd be part of a testing pool so yeah, those 4 months were VERY much a blur of activity.

So my real test starts today.  I awoke and got dressed and ready for work and it dawned on me that I now take 3 less pills each day.  (Yes, I still take 13 pills in the morning and 4 at lunchtime but 17 IS less than the 20 I was taking so hey, it's a little victory but it's still a victory!)  Today I am aware - maybe a little over-aware - of each twitch and shake and motion I make.  It is, of course, about 50 degrees in the office and I'm practically sitting with the space heater in my lap, but at that temperature, we're ALL shaking just trying to keep warm.

But today I'm "only" on Selegiline for my Parkinson's ... so what's my progression rate and how "bad" am I?

Time will tell.