Oh Good Grief!

The 5 Stages of Grief

1.           Denial
2.           Anger
3.           Bargaining
4.           Depression
5.           Acceptance

I've had a fantastic time during my ski retreat in Breckenridge, CO at the BOEC.  For anyone interested in attending or donating you can check them out http://www.boec.org/   

Today, I finally learned to control the speed that came naturally to me.  The previous two days were so fun and I'm sure fun to watch as I went end over end, bailing out and losing my skis.  I didn't fall once today and I give all the thanks to my ski instructor Terrin! Actually, I consider this wonderful lady more of a friend now than merely an instructor.  

Terrin & Me

It was pretty o.k. to be in the company of other parkies this week although I don't think anyone referred to themselves as a parkie, preferring instead the term -PWP (person with parkinson's).  That's a little too politically correct for my taste and as you might be able to tell by now, I cannot take myself that seriously.  My daughter asked if I was worried that a bunch of spazzes on the slope at the same time might cause an avalanche!  Love that girl!

The other participants are for the most part a great group of people.  Most of them are staying physically active and the very fact that they are here indicates that they are trying to hold onto normalcy and and do all that they can to get out there and enjoy life.  It was a much more positive experience than the summit in Phoenix.  

I had two great runs today.  Didn't fall once!  I wanted to end on a high note and I also wanted to hang out with Terrin.  She wasn't her normal bubbly self and I could sense that she was out of sorts. From the start of the day, I relieved her of her duty to be a cheerleader.  I was feeling a little nauseous from having to take a second dose of carb/lev without eating enough to cushion that nasty side effect.  Perkiness wouldn't have been well received anyway. 

As it turns out, we had a great day seeing the sites, going out to lunch and really getting to know one another.  She's an amazing young woman who works with people with all sorts of disabilities as her vocation.  She's called to do this kind of work and she's really good at it.  Unfortunately, it doesn't exactly pay the bills and she works two other jobs besides. 

I realize that I'm the odd duck.  I suppose that any time you get a group like this together there's going to be formal sharing sessions.  YUCK!  If you read this, Terrin, I'm sorry.  I know you were doing your job and REALLY, YOU DO IT WELL!  You'll be running the place in no time.  The other participants gained from the experience.  I don't necessarily mind talking to people about "my condition" as my husband phrases it, but only if it's during the give and take of a natural discussion.  One of the activities was to write a note of encouragement to yourself, seal it in an envelope to be opened at a later date.  Oh please! I dated mine the 12th of Never.  Then, we were to write a negative thought and divest ourselves of it by burning it over the gas stove top.  Good grief!  

Speaking of grief, there's the well known five stages proposed by Elisabeth Kubler-Ross.  It's been pretty well debunked although we cling to the tidy idea that there's a procedure for grieving. There was a lot of talk about coming to terms with limitations and loss, being at peace with it and accepting it.  You may categorize me in either the denial or anger stages and I don't care, but I say, "hell no!"   I'm not going to ever be o.k. with not being able to ride a two wheel bike.  It would be devastating to give up the keys to my car.  I wouldn't ever accept not being able to continue working.  

People talk about grief as if it's a process to get through.  I don't want to.  I have my days where I can be in any one of the stages but I don't ever want to get to the end which is acceptance.  This isn't acceptable!  I'm going to keep ticking things off my bucket list and adding more to it when I get to the end of the original 28. Skiing has a big check mark next to it!  I leave for home tomorrow and I'm going to go to bed now  to contemplate what will be the next item on my list.  

Do you have a list??

The Duty to Waste Time in a Meaningful Way

The Duty to Waste Time in a Meaningful Way

I received a jury summons and dutifully responded and waited until yesterday to see if I would indeed be needed.  As it turns out, my group was not.  I considered going to work as usual but immediately dismissed the thought because my clients were already scheduled to be in the capable hands of my coworkers and I knew my P.I.C. (partner in crime) would be disappointed in me if I didn't take the opportunity to kick back today and relax.  It's not even that I think the place would come crashing down without me.  I might smile a little as I think about the little ways they would miss me because I'm pretty sure they're not entirely aware of the things I do.  I confess that I derive a sense of satisfaction from being the glue that keeps things together and the go-to girl.  But I can't say megalomaniac is among the list of my faults.   

As soon as I made the decision to not go in I started worrying and obsessing about what to do instead.  This is a golden opportunity that doesn't present itself often, in fact almost never.  Worrying about what I might do is a bit of an understatement.  I lost sleep last night.  I had nightmares.  Let's pause for a minute for a word from ....

"Maureen, you're a nut!"  

Thanks, Capt. O! All of this stuff makes perfect sense in my head until I say them out loud.  I'm so duty driven and work oriented that I'm at a loss when I'm not working on a project or towards a goal.  I wanted to be able to report that at the end of the day, my time was well spent.  I started the day by sleeping in.  I had a great breakfast, read the paper and had that second cup of coffee I'm always thinking about as I dash out the door every day.  I spent a lot of the day surfing around the internet pursuing different interests.  One quest was the search for a non work related book to take with me on my ski trip.  I wanted so much for it to be "meaningful and worth the time if it wasn't going to be work related" that I ended up closing down Barnes & Noble last night in search of the perfect tome.  I left empty handed..... Shut up, Capt. Obvious!  I know it!

Granted, it took me the better part of the day, but I finally felt the intense pressure I was putting on myself regarding leisure time.  

lei·sure  

/ˈlēZHər/

Noun Free time. Use of free time for enjoyment.

Synonyms spare time - leisure time - ease

I don't think I get enough of the stuff!  It was then that I grabbed a hunk of cookie dough and drew a bubble bath.  That my friend, is the meaning of leisure time!  My resolution is to carve out more of the stuff for myself so next time it won't be such a monumental happening that I wind up stressing about unwinding!  I'm going to go make a list of leisure activities so I'll be prepared......

I said, Shut up!, Captain Obvious and stop shaking your head at me!  

Dammit! I'm a trainer not a doctor!

I Love My Job!

I can honestly say that I would be at work the next morning after having hit the lottery.  No fooling around.  I help people.  Our BodyBasics ( http://bodybasics.biz/ ) logo has a tag line "Move Better, Feel Better, Live Better.  It sounds tidy but it's really huge when I think about it.  

One of my favorite clients came to me 4-6 months ago and gave me the scare of my career.  I thought I'd quite possibly broken her after our first session only I couldn't imagine how. We did some very minimal stuff.  I was just laying the groundwork to getting her moving.  She'd been suffering from daily headaches and had shoulders and a neck that would have stifled a jackhammer.  We were basically working on proper posture, honestly, nothing that I would have suspected that could have even made her the slightest bit sore.  However,when she returned she'd said she'd been in agony and I couldn't even brush by her skin without it hurting her.  I'm not really sure why she had such  a dramatic reaction and it's never happened again but by the end of  even that session she walked out feeling better.  

She has continued to grow stronger and less stiff.  The headaches are gone and she no longer needs to see a neuromuscular therapist once or twice a week.  She's put in the hard work but I helped get her there. She's doing things now that she never would have attempted and that's what brought her in today completely wracked with pain.  It was her shoulder again and she gotten that way by climbing on a ladder and hefting big plastic containers onto a high shelf.  Score!  I say that because she felt strong enough to even attempt such a job.  Even more impressive when you know that she's 4 foot 11.  She has a husband who is over 6 feet tall but she was sure she could do this herself.  Stuff happens and her ergonomics were all off but I'm still counting this as a win.  

The job satisfaction comes in where she comes to ME and says,"you're the best "fixer" I know you'll get me out of this."  I panicked.  I felt like yelling, "Dammit! M! I'm a trainer not a doctor!"  No pressure.  When I gathered my wits, I fell back on basic anatomy, ferreted out the problem, used a few tricks in my toolbox that I've acquired over the years and actually did fix her.  All  the while, an intern and the new hire were looking on adding to my by now, massive ego.  I'm going to bask in the ego trip a while and savor the feeling of actually helping somebody.  I know that it will be short lived and I'm going to enjoy it while it lasts.  

Self Awareness

Self awareness, not my strong suit.  

The day I got back from the "victory summit" in Phoenix I thought I must have eaten something that didn't agree with me.  I'll spare you the details.  Few people return the favor, seeing nothing wrong with sharing the most intimate details of their bowel habits.  I think that's gross and possibly puts them in a position of being even less self aware than I but I'm already on a tangent....

After about 5 days of eating nothing but crackers, toast and rice and I thought to myself, gee, I haven't felt this bad since my husband was depressed and out of a job, and we with two very small children and me with no marketable skills whatsoever, slowly watching our ship sink.  Also at the same time, my little sister was preparing for a shot-gun wedding -her second marriage and my parents were none too pleased.   I found myself on the business end of some sort of medical scanner convinced I was dying.  When nothing was found medically wrong it was suggested it was a case of IBS.  I was incredulous that my body could betray me and not buy into it when I told everyone I just knew that everything would work out.  Intellectually I thought and believed that to be true.  My body on the other hand wasn't having any of it.

It didn't occur to me just how deeply that conference bothered me.  I thought I put the issue to bed with my cathartic blog entry.  I'm not even sure I can put my finger on what exactly pushed me over the edge.  The great thing that I actually love about myself is once I realized I had been pushed that far the symptoms cleared.

I handle the negative pretty glibly and dismiss it quickly in the hope that it won't take root and wield any real power over me.  I keep myself pretty busy proving that I'm not that affected and I'm still the same tough, sarcastic and ornery girl I've always been.  I celebrate privately inside my head when people say I've got a pretty positive attitude and they forget anything is wrong with me.  It's when that facade is chipped away or not strong enough to keep everything out or when people simply see right through it that I almost short circuit.  One of my readers privately messaged me after she read this blog:

 Dearest Maureen,

Your blog is just like you: feisty, vulnerable, brave, funny, outrageous. But through all of your blogs I sense pain, the intense pain and bitterness of being dealt such a lousy hand at such a young age. I can only say the pain resonates through my body as you talk about it. It becomes real and formidable.

I wouldn't run from it, Maureen. Probably the funniest entry is your day in Phoenix with all these phony-cheery people yucking it up with joyful yoga. How absurd do people think Parkinson's sufferers are? Your outrage was appropriate and heartfelt, you were furious at being condescended to like that. I say, "You go, girl! Tell it like it is."

I loved the entry on Rob, and Amelia, and the motorcycle, and on your boss delivering you a lecture. But I don't think you should apologize for your feelings about having this disease. The one thing we are all counting on from you now is to forge a new life out of what you have left, to give us some insight into your feelings as the disease progresses, and to emerge triumphant in some way. Like Stephen Hawking or Michael J. Fox, you will prevail, not just endure. Because you are a strong and resilient person, and you are going to in some way leave your mark.

So keep writing, and give us all the pain you feel. We can handle it, and will love you all the more if that is possible. You are very special.

Love and admiration,

xxxx

I was so touched and so moved and so surprised that she had my number.  She understood and articulated for me better than I ever could for myself.  The coup de grace was in the last bit where she throws in some unconditional love and encouraged me to just be real.  I wept.  I re-read and and I rudely didn't reply.  I'm ashamed to say that she worried she had offended me.  My carefully crafted exterior wasn't enough.  She had penetrated it easily and I recoiled like a petulant child.  I'm not sure how to be or if I even  want to be real.  Sure, I'm honest but being real and sharing vulnerability?  Typing this and having my say, editing my thoughts and howling into cyberspace is a practice run I suppose.  I'm tightly wound and bound with many layers of duct tape.  If the corners are picked at and peeled back I'm afraid of what might come spilling out and afraid that the pieces wouldn't ever fit neatly back together.  I would have to abandon my modus operandi of "stuff it and move on".  Honestly, that's the way I've  lived my life.  It's allowed  me to sidestep grief and shuffle by most of life's entanglements.  There are cracks forming in my foundation and maybe it was only a matter of time that I could get by like that.  Maybe this is what my Dad is talking about when he describes hitting the wall?  

Work and life have been pretty busy lately.  I haven't had time to fully sort through and make complete sense of all this yet but it bubbles up to the surface even still.  I'm usually thankful for the distractions of being busy.  This time, I'm going to go out on a limb and actually try to resolve it rather than stuff it.

Boys Are Different

I was going to title this one "Boys are Weird" but I've been to church today where they've spent the last month dissecting relationships, marital relationships in particular.  So for me, top of mind is the thought that we're supposed to be different, that's what makes it work. 

I've been married to my wonderful husband for over 18 years.  He lets me be who I am and I even think he loves me for it.  He's a pretty quiet, creative and passive guy and the last place you'd find him is in the gym.  If anybody's reading this you can safely say opposites attract.  Attract is a great word too because he's about the only guy who was interested in me based on looks alone.  Usually, I fell into dating my guy friends.  He picked me up at the grocery store while I was working my way through college.  It was very "Officer and Gentlemen", him decked out in his navy uniform coming through my line most every night for six months before he asked me out.  And by "asked out" I mean that he threw his business card at me and asked over his shoulder for me to call him if I was interested while he made a hasty retreat.  Our first real date was to the Navy Ball and it seems cliche but I knew that night that we would be married.  Three weeks later, we were in fact engaged which caused quite a stir in our families.  He was 36, I was 19.  I shake my head as I type that. Couldn't have known then but fast forward to present day, and I'm the only one of my siblings still married.  Sure we've had our ups and downs with two great kids, a couple of moves, and several job changes and most recently some unpleasant health concerns.  Not even going to mention the "P" word this post.  

Anyway, I've mentioned in passing that I was writing this blog to him.  The other night, when he asked what I was doing I told him I was blogging.  The obvious follow up in my mind is, "Can I read it?".  Apparently not for him.  Makes me say hmmmm.  And in the next breath it makes me say, boys are weird.  

Davis Phinney is a Good Guy.  

The retired cyclist has found a way to make sense of the disease for himself and become a source of information and hope and possibly even an answer by funding research for those diagnosed with PD.  I  went to the Victory Summit in Phoenix today not really knowing what to expect.  Considering I didn't have any expectations, it's all the more depressing to be disappointed.  I was by far the youngest in attendance and that made me feel alone in a room filled to capacity.  I learned a few small things and I got a more thorough understanding of the forced exercise experiments.  Those experiments have lead to the push for intense exercise, I think.  The lectures, some good, some not so good, were interspersed with some crazy "exercise", dance, and worst of all "laughing yoga".  Laughing yoga consisted of the whole room full of people forcibly laughing without cause like demented hyenas.  I get that there's some science behind it but seriously, it was disturbing.  The enthusiastic crowd engaged in what could only be described as a Parkinson's Pep Rally.  They ate it up.  It was almost like they were glad to be part of an exclusive club.  I don't get it.  Parkinson's stinks.  I wanted to cry, punch somebody and leave.  I didn't cry right then and I thankfully didn't punch anyone.  I did in fact leave before the conclusion of the summit after realizing that the early onset break-out session wasn't going to have any of my peers in it since no one was a day under 60 years old.  Plus, it was billed as an uplifting and encouraging session.  I'd had about enough of that.  

A look at laughing yoga.  No, she didn't just hear the funniest  joke of her life.

I don't need:

• a cheerleader!  
• to be told to be my own informed advocate!    
• to be encouraged to exercise!
• to be reminded not to give up!

To quote what the kids are saying these days,"Duh! Obviously!"  I'm willing to admit I march to my own beat sometimes.  If  the other people in the room needed that, great!  I'm glad they got what they needed but not me.  In addition to what I didn't need, I didn't want to see what may or may not be next for me down the road reflected in the faces I saw.  What do I need and want?  What I can't have, of course.  I'm a planner.  I need a peek into the future so that I can see exactly what my future self will be dealing with and plan accordingly.  No one gets that.  I want to know if some of my weird little quirks like not noticing anything seen out of the eye on my affected side are Parkinson's related.  For me, an out and back walk contains two different sets of scenery: the view out of my left eye going up the street and the other side of the street when I'm on my way back.  Even if I find out it is or isn't a symptom who cares?  But I wonder.  I wonder if my kids are going to inherit this from me.  Would we even want to know?  Maybe. I need to know if there's anything else I should be doing.  The problem with unproven complimentary therapies is they're expensive and it's easy to fall prey to every snake oil salesman selling false hope.  

What Now?

I'm done with Parkinson's.  I know it's not as easy as that and I don't mean I've found a cure.  I mean that I'm done giving it more attention than it deserves.  I don't want to make it my life's work.  I've faced it.  I've conquered my abject fear of it but continually dwelling on it is making me crazy.  I don't want to devote my personal training career to it.  I love my job too much for that.  I don't want to be a parkie expert or celeb.  I don't need to attend any more support groups.  When I told my boss this the other day I immediately felt like I removed the millstone from around my neck.  I'm going to do what Dr. Bose said I should do when I asked, "what now?" immediately following the dreaded diagnosis.....Live Your Life!!  

What's Next?

The next task at hand is to call the outdoor adventure school for people with disabilities and tactfully ;-)( not my strong suit)- ask about the average functional level and age of the other participants in the upcoming ski trip.  I need to know exactly how much of the time is going to be devoted to talking about Parkinson's.  I couldn't hack a whole day of it and the last thing I want to do is be stranded in the middle of nowhere subjected to an all Parkinson's all the time show for 5 days!  

I'm willing to admit I might be wrong about all of this and I reserve the right to change my mind later.  Thoughts anyone?

Never Let Them See You Sweat

I  pride myself on never letting them see me sweat but now they can see me shake.  I've got a built in mechanism that tells me when I'm under stress- good or bad.   My boss corrected or better yet educated me about a fairly minor point today while I was with a client.  I say minor because I certainly wasn't going to hurt anyone but in the long run his strategy will prove more helpful to the client.  He was right, I was wrong but it bugged me.  I've asked him to please wait to tell me these types of things until later but it's really no big deal.  When he revisited the point later on to make sure I understood I listened intently looking for a way to save face and make some sort of intelligent contribution.  I wanted to turn it into a discussion rather than a lesson.  There wasn't any room for that.  I was getting told and I saw the same insistent look in his eye that he has when he's correcting one of my co-workers on a no-brainer.    He was standing and I was sitting in a chair with my legs crossed over.  I didn't like being in the hot seat and my shaking leg betrayed my annoyance.  I'm pretty sure he noticed the chink in my tough guy armor.