Wednesday, July 31, 2013


Communication issues.

But hold on.  First a quick update on the training.  Yesterday was my first day of combining consecutive workouts.  I had a perfect day planned....that should have been my first red flag.  Never plan a perfect day.  You must allow one to evolve.  Anyway,  I rode my bike from my house to Gillson Beach WITH a heavy backpack on.  5.6 miles.  Only stopped once for a red light at Lake and Ridge.  It started raining about 10 ft from my front door.  But it could also rain the day of the triathlon, so I persevered.  Rained the whole ride to the beach.  Got in the FREEZING water and swam 1/4 mile.  I always feel compelled here to qualify the word "swim" because I don't want you to think I swim freestyle the whole time.  I don't.  In this context, the word "swim" means I never stop moving.  So sometimes I am truly swimming (think Connor Dwyer) and a lot of the time I am just trying to propel myself forward by any means possible.

OK.  Continued to rain the entire time in the water.  My plan had been to finish my swim, chill on the beach for a couple hours, swim a little more, ride my bike to my dance class (2.5 miles away), have my dance less and ride my bike home (3 miles).  The best laid plans....  I actually did lie on the beach for the rain.  That became a little unpleasant because it was not even warm out.  So got on my bike, rode to dance, where my tire ran out of air.  Again, the best laid plans....  However, when you add my dance lesson, it was a really good work out.  And here's the amazing part.  I was sore and tired when I got home, but not dying.  Let me repeat that...NOT dying.  And when I got up this morning, I was not even sore.  Something has changed in a year.  Last year, even up until the day of the triathlon, I was always sore and tired after my work out.  Not sure what accounts for the difference since anything remotely having to do with physical fitness is still a black hole of mystery to me, but whatever it is, I am grateful.

Back to communication issues.  So, Vlad, the crazy ass Moldovian dance teacher has a very healthy ego...which is well deserved because he is hugely talented.  I also have a healthy ego because I'm 54, have worked in my profession for 33 years, lived my life as a plus size woman in a skinny valued world and thrived, rarely say no to adventure and opportunity, and have just plained worked for the healthy ego.  Patrick, by all accounts, was a master communicator, able to charm his way into and out of anything.  I did not know him when he had his voice, but even without his voice, he is a master communicator, still charming his way in and out of anything.  Patrick also has a well deserved healthy ego.

When you put two healthy egos into a dance studio, it can be like those grammar school science experiments of mixing baking soda and vinegar and creating a volcano.  I do have the good grace and common sense not to have a healthy ego about my dancing abilities, but I don't follow directions well.  Especially when I don't understand the reason behind the directions or I don't think it makes sense.  Vlad, on the other hand, is very confident about his teaching ability and methods and doesn't understand why someone would question him and not just do as he says.  He knows what he's doing and knows he right, so why would anyone question that.  I, on the other hand, don't do anything just because someone tells me to and haven't for a really, really long time.  Not that that has always worked out well for me.

The missing quality in this conflict is trust.  When and if I really trust someone, then I will listen and follow without questioning.  I have to really, really trust them.  And that takes a really, really long time.  Especially with physical stuff.  You have no idea how many trainers, gym instructors etc, have given me advice, or think they are able to hold me up, or support me, or whatever and my ass lands on the ground.  So, trust takes awhile.

As a nurse I share information all day long and lay out a plan that literally can save and preserve LIFE, and people want to go their own way and ignore me.  And that's their right. I'm also used to giving out information that is constantly questioned and most of the time I can explain why I'm saying what I'm saying.  But sometimes, there literally is not time to explain or its impossible to pour 33 years of experience into someone else's head.  And so I find myself saying, "Please, just trust me.  I know what I'm doing".  And that's asking a lot of someone.

Typically, the dance studio is the one place I don't have to censor myself because Vlad does have a strong ego.  I yell, swear and generally express my frustration in a variety of non productive ways.  And typically we have a lot of fun.  But I am learning there is not always a value in conflict.  Sometimes the best and most productive thing to do is listen and follow directions without questioning, because you trust them.  So, today I am going to trust and not argue during my lesson.  I'll let you know how that goes.

Then I look at Patrick.  Things happen to him all day, every day without people explaining what they are doing.  From the moment he woke up from surgery, almost three years ago, his life depended on trusting people he had never even met.  He did not have the luxury of a really, really long time.  He had to depend on people he DID know and trust to now care for him in entirely new ways...with no time to judge whether they were trustworthy in performing these new skills.  He lets people into his home, to care for him throughout the night, whom he does not know and does not trust.  Because he has no choice.  What must that be like?  When I put myself in that position, the overwhelming emotions are anger and frustration.  I want to be in charge and I'm sure as hell not going to let you be in charge if i don't know you.  But I am dependent on you for every basic need I have?  That so sucks.

What is amazing, is when you meet and get to know Patrick, anger and frustration are not remotely the first emotions you encounter.  He makes you laugh, he's patient, he explains what he needs.  I don't know how he does it.  There are definitely times when he is angry and frustrated, but he doesn't lead with that.  I wonder if its because he does have a healthy ego and knows his body does not define him. I'm going to ask him.

I guess the point its whether you are 20, 28 or 54, life always presents moments that humble, enlighten and strengthen us.  The trick is to catch the moments.

Sunday, July 28, 2013



Exactly four weeks from today, I will be participating in the 2nd Annual Chicago Triathlon for The Patrick J. Stein Foundation!!!  Of course I feel completely inadequate and ill prepared.  I feel like I was much farther ahead last year and seemed to train more often.  Then I realized I was not working full time last year and I was not spending three days a week with the crazy ass Moldovian/Russian dance teacher.  I am counting, however, on the crazy ass Russian to have built up my endurance.

Patrick and I have had our 15 minutes of fame lately.  We've been on CBS news twice.  There have been a couple of local newspaper articles about Patrick.  Last week a Chicago Tribune reporter came and interviewed us for over 2 hrs.  In between all of this, Patrick has been hospitalized twice.  I spent the night with him a couple times while he was in ICU and this is his exact text to me,"Hi can you bring your computer here today and i am spending the night over a horse shit call by the doctor do you want a cot?"  I appreciated that last nod to hospitality.

During the most recent hospital stay, Patrick asks me, "Will you do me a favor?"


"Will you loan me some money"?

"For what"?


"Underwear????  I'm pretty sure if you asked your mom for underwear she would buy them for you."

"You have no idea what a nightmare it is without support".

"Whose not supporting you honey?  We all support you.  Your mom supports you.  Everyone loves you.  Is there someone who is not being nice to you?  Who is it?  Give me their name.  I will not tolerate that.  And do you think you're being just a little hard on your mom...calling her unsupportive because she hasn't bought you underwear?  She's had a few things on her mind...."


"WHAT????", I said.

"I mean support from my underwear!!!!"

Not having had to support men in that area in a REALLY long time, I had apparently  missed the whole point.  Anyway, I got back on point:

"OH....I get it! Sure.  What do you want me to order?"

"Boxer. Briefs".

"Ok honey, do you want boxers or briefs."

"Boxer. Briefs"

"Patrick, its a yes or no question.  Do you want boxers? or briefs? Boxers? yes or no.  Briefs? yes or no."


"OKAY!  What???"


At this point I am beside myself and Patrick is ready to kill me.  Clearly I am misunderstanding.  I pull out my phone and google "boxerbriefs".  Sure enough there is such a thing!  Boxers, that fit like briefs!!  Haines 3 to a box.  Done.

I think we both burned about a thousand calories on that one.  

I was riding my bike today.  It was windy and hard.  Usually, I start a little whining routine in my head about how hard it is, when can I stop, is it cheating to ride in the other direction (with the wind instead of against).  Vlad, my private, cute Russian ballroom dancing teacher, had me pegged in my first lesson.  He said, "you will do anything to find the short cut, won't you?"  Yes, goddamn it and is there something wrong with that? And how did he figure that out in 5 fucking minutes?

For some reason though, today was different.  Like a ticker tape mantra going through my mind, I kept thinking, I'm riding for Patrick.  I'm riding because he can't.  I'm swimming because he can't.  I'm walking because he can't.  Each step, each stroke, each mile is for him, because of him.

The Tribune reporter asked Patrick what his role was going to be at the Triathlon.  His response, "just sitting around waiting for the last person to finish...Mary Jo".

Gotta love that kid!

Now for the hard part.  Asking for money.  Last year we raised 10K for Patrick.  I would love to beat that this year by any amount.  So much of Patrick's care and needs are not covered by insurance.  As usual, I don't want to make this a political discussion.  Its just a fact.  Whether its Blue Cross Blue Shield or just doesn't cover everything.  Physical therapy is a simple example.  Insurance is happy to pay for physical therapy when a person is showing progress and improvement.  But what happens when the improvement is small, but real...takes months, but is significant?  We live in a culture that values speed.  We don't pay for patience.  It doesn't matter if its right or wrong, its our reality.  The whole premise of Patrick's recovery is built on slow and steady.  Repetition.  Insurance will stop paying at some point and physical therapy is Patrick's concrete measure of success.  Without it, he will lose ground.  That is just one of so many examples.  

So please open up your hearts again and help be Patrick's arms, legs and voice until is he able himself.  That day will come and it will be a triumph shared.

Donating is easy!  You can hit the DONATE button at the right, and you will be donating directly to Patrick's foundation through Sister Paulanne's Needy Family Fund.  OR you can write a check to Sister Paulanne's Needy Family Fund and write Patrick Stein/Mary Jo Harte in the memo line.  Mail to:

Sister Paulanne's Needy Family Fund
c/o OLPH Parish
1775 Grove St
Glenview Il 60025

or mail to me

Mary Jo Harte
1659 Winnetka Rd
Northfield, Il 60093