Tuesday, August 27, 2013



I never know what to say when its all over...which is a very unusual predicament to find myself in!  The feelings, emotions, words, thoughts are so overwhelming and have been swimming in my head now for two days.  The two words that keep repeating over and over are:  Wow and Thank You.

This year was a really great race.  I was a bit more confident than last year because I knew what to expect. (The first time in a transition area is insane.)  I had also been more active for several more months than last year so I felt in better shape over all.  AND Patrick would be at the finish line this year, which is huge.

My start time in the water was at 7:30am, an hour later than last year, which was nice.  I was still putting my bike into transition at 4:15am, but got to chill for a bit until I had to get into the lake.  The announcers at the swim start Todd Busteed and Michael Williams, gave an amazing tribute to Patrick.  They picked me out of the crowd and talked about how Patrick motivated me to start this journey a year ago and continue it on this year.  My fellow swimmers were terrific and everybody had encouraging words.  Its hard to explain how the energy and kind words from these announcers makes such a difference!  I was nervous, had a million thoughts going through my head, worrying if everyone figured out where to park and where to meet, hoping I wouldn't get run over by an uber swimmer...just totally spinning on stress adrenaline.  Then these guys' voices break through, focus me on Patrick, make me laugh, let me take a minute to remember how special this all is and turn it back into fun.  And I'm not the only one they make that happen for....thousands of athletes are warmed by their words.  I love them!!!

Let me just say, I love the swim.  Now, having said that, you'd think I'd be turboing my way through the water.  No.  Just the opposite.  For those that know me well, I am a water baby.  NOTHING makes me happier than being in/on the water.  I am a human bobber.  I can float vertically in water over my head.  Like I'm standing...only I'm not because I'm 5'2 and the water is way deeper than that.  So, during the swim section I actually have to remind myself there is a competition going on and I have set a personal goal to beat last year's time.  I'm lookin' around, waving at my friends, having a conversation back and forth...just chillin'.  Seriously.  Then it dawns on my that being the human bobber is not getting me to the finish line any faster.  But I did cut off a few minutes from last year's time anyway.

I'm also quite found of the bike.  The city is so beautiful and it wasn't too hot yet at the start of the bike. And the great guys at Glenview Cycle, suggested on Friday, (when i brought my bike in for a tune up...very last minute) that I change to smaller (skinnier) tires.  I was afraid that small tires wouldn't hold me up.  Despite my well developed ego, even I do not want the world seeing me in my tri suit, with every roll and wrinkle showing, sitting atop two flat tires that could not bear my girth.  Even I have my limits.  However, the Glenview boys assured me it has nothing to do with weight and my old tires were providing me with some unnecessary resistance training.  I will do anything to make my ride faster and easier.  The new tires were wonderful!!

The bike starts out on an up hill.  Yes, you heard me...STARTS UP HILL!  I have now heard Todd Busteed say, two years in a row, "set your gears in your bike so you are ready to ride up the hill".  I don't really know what that means.  So, I make my way up VERY slowly, changing gears every two seconds.  But I made it to the top without having to get off and walk!  There is a hill at the end that killed me last year and this year.  Just could not get all the way up without stopping and walking it.  But who cares?  The ride down was fabulous!

I'm just going to say it.  I HATE THE WALK!  I know I should be more of a good sport and not whine, but god I hate walking.  I'm not able to run it so I walk and it feels soooooooo slow.  And it was getting really hot.  My speed was good and much better than last year, but my back was  spasming so I had to keep stopping to stretch it and that pissed me off.  But there were so many great people along the way who remembered me from the swim and called out my name and encouragement and man, that is so energizing.  And the other athletes are incredibly nice!  I was stopping to stretch close to the end and looking pretty raggedy.  I was really hot, very tired and having to stop more frequently.  A very fit, authentically athletic looking guy stopped next to me and said, "you can not  stop.  you must put one foot in front of the other.  I am not going until you go."  Jeez....this guy is a real athlete...I'm sure he really cares about his finish time and he's stopping for me!  Well that got my ass moving. A few feet before the finish, I was starting to feel cold and getting goosebumps.  Not a good sign in 90 degree weather,  There was a young woman watching the race.  I asked her for water.  No idea who she was.  AND SHE GAVE ME HER WATER!!  Chicago rocks.

As I came around the corner Patrick was waiting for me.  The officials allowed him to cross the finish line with me (picture above).  Michael and Doug were announcing and again made us feel like a million bucks!  The crowd was cheering and I could not believe we were crossing the finish line together.  Couldn't believe it was over!  Patrick was all smiles and a little bit disappointed he did not need to call 911 for me.  I accidentally walked into the medical tent which was very fortuitous because I was so hot and tired I could not stand.  I plopped into a chair, but the medics thought Patrick was the problem and covered him from head to toe with ice cold towels.  HELLO...I JUST RAN THE RACE!  Patrick started blinking and said, "get these towels off of me".  I took them.

The first word was Wow.  The second word was Thank You.  Thank you to every person who donated this year to support Patrick (I will shamelessly point out you can still donate by clicking on the donate button at the top of the blog).  Every dollar goes to Patrick.  There is no overhead.  Thank you to my wonderful brother, Tom Harte, who donated this year's T Shirts.  Thank you to Colette O'Reilly who made the shirts at less than cost.  Thank you to Mary Nimrod, trainer extraordinaire, who trained me at the beginning of the season at no cost as a contribution to Patrick.  Thank you to Ed Reardon who provided me with some great nutrition tips and a really great supplemental drink called Vitargo.  Again, all at no cost.  Thank you to my terrific sister Eileen Harte who promotes me endlessly through Facebook and email and drives her coworkers crazy.  Thank you to Grandpa's and Mike Maginot who provided the after party food at a discount and wrote a very generous check.

Thank you to my beautiful friend Sue, who has more than enough on her plate with her own health issues, but remembers to send me texts and emails of love and encouragement AND beautiful flowers!  Thank you to my ballroom dancing girls who have shared many laughs and anxiety driven shots of tequila with me!  Thank you to all my wonderful friends who take the time to listen to me whine and still remain incredibly encouraging and loving...Maria, Joe, Val, Jeff, Gordon, Sue, Sue....and all the Facebook encouragers!!!

I have to give a special shout out to the crazy ass Russian dance teacher.  I can say, without a doubt, though it pains me to admit it, there is no way this year's race would have gone so well without him.  My body has changed in so many ways and each way made working out and competing easier and better.  In particular my core.  There are whole exercise classes and DVDs devoted to strengthening your core.  Nothing works better than to have an annoying Russian hit you in the stomach every time you start to relax.  Believe me.  And I have tried to work around it.  Every time he yells "make your belly button stick to your back! suck it in! " I yell back, "it is in you asshole! you just can't tell because I'm fat!"  But its not and he knows it and I have to suck it in.  I remembered to suck it in during the swim, on the bike and when I was walking.  I'm always complaining that its hard to hold in my abs and I have more fat to hold in so its harder for me than anyone else in the world (oh yes, I do actually say that).  He points out...every fucking time...that once I learn to hold in my core and stop bitching about it, everything else will become easier.  He's right.  I HATE THAT!!  But Vlad, my sweet, you have endured my yelling, my frustration, my tears and more yelling.  And I am so grateful and love you for it!

Finally, my wife Renee.  She lives with me and still loves me and still lives with me.  Enough said.

I beat my time last year by 40 minutes!  When I got on my bike I looked at my watch and thought, I want to finish by 11am.  I think I crossed the finish line either at 11 or 11:02.  I'll take it.  I'll take all of it.  Every single second.

Saturday, August 24, 2013

17hrs 56 min 26seconds until Race Day!!!!! BRING IT ON BABY!!

I logged on to the Chicago Triathlon website this morning and this is what I saw.  Awesome! And scary!

Having fun.  That's really what its all about.  Its a bit freeing not to have any expectations about a competitive finish.  Though, maybe that will change some day.  But for now its about Patrick.  Its about me.  And its about having fun!

I was in the shower this morning thinking about this blog and feeling so overwhelmed with emotion.  The last several weeks have been crazy.  Life with Patrick has been a blast...a great Tribune article, a documentary being made about him and just some great time between the two of us.  Laughing, smiling, talking.

Work (I'm a hospice nurse on an inpatient hospice unit) has been intense.  Its a job that most of the time I love and some of the time, like most of us, I don't.  Recently we have had several very young patients  That is always difficult and forces reflection.  Then out of no where something happens that makes me love my job again.  I was taking care of a 51 yr old woman who was dying of colon cancer.  This was not a patient who's heart warming story graces the pages of Chicken Soup for the Hospice Soul.  She was not going down easy or happy.  She was a strong Eastern European woman who was losing control and did not know how to cope.  She wasn't warm and fuzzy.  Very few things we offered her were agreeable to her or helped.  A couple nights ago after an exhausting amount of time placing things just exactly right on her bedside table (two of them), repositioning her, listening to her explanation of why she thought she had pain, which including every possibility in the world other than the large tumor pressing on her spine, and praying my last nerve would not fray, I asked her if there was anything else I could do for her.  She looked directly at me and said, "Yes. Can you sit with me for awhile?  It helps."  And I did.  I pulled up a chair, held her hand and talked about sustainable farming, gluten free diets, her two sons, growing up in Poland, unhappy marriages, falling in love again.  And then she fell asleep.  And I thanked God, nor for the first time, that I had a job that allowed me the time to do exactly what i was doing.

Friends, cancer and the universe.  One of the other joys and gifts that has come to me through Patrick is reuniting with one of my oldest and dearest friends.  We went to grade school, high school and college together.  We were roommates in college.  We drifted apart after college, mostly because I was not the friend I wish I had been.  We connected on Facebook and she reached out to me after reading about Patrick.  The day we met again after 30+ years was like time had stood still.  4 hrs later we left Panera and I felt like not a day had gone by without us talking and seeing each other.  6 months after than she told me she had been diagnosed with advance ovarian cancer.  fuck.

Her path to treatment has been a holistic one and has included treatment plans that are new to me.  Sometimes I want to scream, "PLEASE DO IT MY WAY!"  Do what I am familiar with.  Let me do what I know so I can help.  But its not my path, its hers.  But I am on the journey with her and am so grateful and joyful that she is in my life again.  And right now she is doing well.

THEN, as if all these cancer stories were not enough....another friend just sent out an email that she remains cancer free 18 months after being diagnosed with one of the most aggressive types of cancer we know.  And it was advanced.  And today she has clear CT scans, walks 10,000 steps a day and is taking off on a road trip with her best friend!

The moral of the story being you just never know.  None of these stories ended the way I would have predicted.  So look at the people you love.  Kiss them.  Tell them you love them.  Because you just never know.

I know this an odd pre-race reflection.  But its where my weird little head goes.  My friend Sue, (the old grade school, high school, college friend) looked at me the other day and said, "You know, Patrick and I have something in common.  We can't run.  But Mary Jo can run for us."

Yes I can and I will.

I love you all more than you can ever know.


Details about the race:
Sunday, 8/25
I am Bib# 2651, Heat 18
Into the water at 7:30am
If you download the app Lifetime Tri Chicago and enter my name, you can follow me on your phone
After party at Grandpa's at 2pm
In Glenview, on Prairie, across from the Glenview trainstation
I am expecting people to shower me with shots of tequila

Tuesday, August 13, 2013


A talented young film maker from New York, Colleen Shaw, is currently filming a documentary on Patrick.  This is going to be an amazing and profound movie.  It will show all aspects of Patrick's life; his spirit, his humor, his frustrations and a very realistic picture of his every day life- which is not always easy to watch.  To see a trailer of the movie check out  http://www.kickstarter.com/projects/2122445118/crush-it-the-steins-story.

 This movie is an opportunity for people to understand the life of an individual with Locked In Syndrome.  It is a rare opportunity to have an inside view into a rare and potentially devastating  condition.  Its also an opportunity to see how one young man does not let the illness or the devastation define him.  

##CRUSH IT (ok, I have no idea how to use the #)

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 awhile...in 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!!

Amazon.com  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 Obamacare...insurance 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


Sunday, June 16, 2013

When the going gets rough....

I've had two particularly difficult dance lessons lately. One I ran of air and the other I ran out of talent.
Both have caused me to indulge in narcissistic life review.

We, my handsome, private, Russian dance teacher and I, are working on a seemingly very simple step. Its basically moving to the right, left, forward and backward with a hip action...kind of a swivel.  This is the kind of step when you are drunk and with your girlfriends on an all girls weekend, you can pull off without thinking.  Because you're not thinking.

Unfortunately, I cannot be drunk at every lesson...though perhaps I should try that.  Anyway, this step is on the verge of defeating me.  I know that sounds ridiculous, but you try it!  In heels!  My dress shoes are little, black Me Too flats.  I don't wear heels.  Now I have to practice in pedal (pronounced peedal) tools of torture.

So a few weeks ago, we were working on this step.  I start at one end of the studio and do the step across the floor to the other end.  And its not just the hip action that is important.  You must also:  keep your shoulders down,  stand up straight with your gut held in, toes pointed, feet turned out, toe lead, one hip back and the other knee bent and lined up over your foot, your arms are up and held out in front of you with slightly bent elbows and then you take a step, on the inside of your foot and WITH ENERGY AND A SMILE, then switch hips with beauty and precision.  OVER AND OVER AND OVER AGAIN.

Towards the end of the lesson my energy was waning and the smile was long gone.  I made it 3/4s of the way  across the floor and could not take one step more.  I was out of breathe, my knees were killing me and I was exhausted.  So I stopped.  So I could breathe.  Big mistake.

"DO NOT EVER DIE ON THE DANCE FLOOR!!!" yelled Vlad.  "You make it off the floor, smiling, and then collapse".

"Jesus Vlad", I said while gasping for air, "I was practically there.  Just a few more steps".


"All right, all right.  Jesus.", I said as I dragged my fat ass back to the starting point.

And I did it all the way across.  And you know what?  NOT ONE SINGLE FUCKING ENDORPHIN!!

Yesterday we were still working on the same freakin step, but now going to the left.  I'm not going to say I mastered the step going to the right, but I was sort of getting it.  However, going to the left was virtually impossible.  I couldn't even start.  When I had to do it in reverse, every time I tried to take a step, it was like my mind stopped and my body ran into a brick wall.  I could not do it.  I was not feeling good about this at all.  Have you ever found yourself in a situation where you were not succeeding, let alone miserably failing, and every single moment of insecurity comes rushing back to you?  Suddenly you remember every single time you were embarrassed.  Every time your confidence wavered.  Fucking up in math in first grade.  Being on the wrong foot in a recital in 5th grade.  Having to wear  bright yellow tights and a leotard during your high school senior dance program and looking like a giant Easter egg dancing across the stage.  Going to Wendy Ward's Charm School in 7th grade, before plus sizes were invented and during the final fashion show, having to model a rain slicker with hippopotamuses  all over it.  You heard me.

All these memories and feelings come flooding back, plus many, many more, washing over me like an emotional tsunami.  You are literally unable to remember one thing you have every done well.  Not to mention I felt at least 400 lbs.  Not an ounce less and possibly an ounce more.  I just finished reading an interesting book called Half Assed, about a woman who lost over 200 pounds.  As I was reading I felt compelled to eat.  Just reading about someone else's issues made me anxious enough to eat.  I put the book down.  Clearly I've got my own shit to deal with without eating on someone else's behalf.  jesus.

So I find myself ONCE AGAIN dealing with issues I have been dealing with as long as I can remember.  Being in the same position at 54 as I was at 12 begs 3 questions:

1.  Is this normal?  (lets not waste a lot of time on that one)
2.  Am I someone who never gives up and keeps persevering?
3.  Am I someone who always gives up before the last 3 feet and therefore never really succeeds?

Clearly, I would like the answer to be # 2.  I would love to be the persevering warrior who never gives up in the face of adversity and because life has so much adversity, she's still carrying on after all these years.  I'm not so sure.

I posed the question to Vlad, my dance teacher.  He did not even pretend to think about it.

"You're someone who gives up.  When it gets too hard you stop".  Soooo glad I included him in this poignant, personal discussion.

My best friend Maria, God bless her, said "You are strong and tenacious.  And you have a short attention span.  When something is time limited you work VERY hard, like the Triathlon.  But when its a change for the long haul, if it doesn't come easy, you get frustrated and discouraged and then look for something else to move on to".  Isn't she sweet?

So, clearly, the answer is #3.  I was watching the Blackhawks game with Patrick last night and asked him about giving up and getting discouraged.  Does he get discouraged?  Does he ever feel like giving up?

"Giving up has really never crossed my mind.  I feel discouraged but giving up is never an option."

There you have it.  I know there is very little benefit in comparing one person's challenges to another, but come on.  I think I can learn a little something from this kid.

So I am committing to all out.  Not stopping 3 feet short.  Finishing the whole bike ride, swim, walk when I'm training.  Not taking short cuts.  God, I LOVE short cuts!  I invent short cuts!  I live on short cuts.  The thing I worry about is I'm such a bitch when I stick to something and don't use food or short cuts.  SO crabby!!! So I'm giving fair warning to those around me.  I'm not even going to try and temper my temper.  Its just too much stress to work as hard as I can and be nice.  I'm just too much of a bitch.

I give anyone permission to remind me of this when I start to waiver.  Just do not expect a nice response.  Clearly, Vlad does not need permission.

Finally, I WANT A TEAM PATRICK!!!  Truly, who can claim they are not in shape when I AM DOING IT AND HAVE DONE IT!  Friends of Pat, get off your skinny, young asses and join me!  Think how young and vibrant you will look compared to me!

                                                     Me, Patrick and our friend Jeanne Jacobson
                                                     watching the game last night.  Jeanne and I
                                                     are in Patrick's bed.  I hope it doesn't have a
                                                     weight limit.

Monday, June 3, 2013

Day 84 COME JOIN ME!!!!L

OK, here's the reality:  people are not going to be fascinated and motivated by me forever.  I am not the only overweight, middle aged woman trying to get fit and also raise money for a cause close to her heart.  Over time, its just not that interesting anymore.

SO.......I NEED YOUR HELP!!!  Get off your fat or skinny behinds and come join me!  Start your own blog.  You'd be amazed what you notice about your day when you know you'll be writing about it later.  OR, don't start a blog, but join me at the triathlon and have your friends and family sponsor you and you can raise money for Patrick.  You can refer your supporters to my blog and they can donate from there.  You can also always accept checks to Sr. Paulanne's Needy Family Fund, Attn: Patrick Stein in the memo section.

It is so much more fun to have a group.  The energy is contagious.  And frankly, I'm a different person today than I was last year at this time.  Unless you are one hundred percent satisfied with your self, and god bless you because you're going to hell for lying, its amazing to take on something like this.  Your stories will mean so much more to your family and friends than mine.  Your transformation will transform them.

The triathlon is August 26, a Sunday.  On August 25, there is a super sprint triathlon.  Its half the distance of the sprint, so the break down for the super sprint is 1/4 mile swim, 6 mile bike and 1.5 mile walk/run.  I started at this level several years ago and it is very manageable  Anyone who participates on Saturday I will be there with bells on, balloons, signs and lots of cheering.  Its a GREAT way to work your way into a triathlon.

August 26 is the full distance and the sprint distance.  The sprint is 1/2 mile swim, 12 mile bike and 3 mile walk/run.  The traditional distance is twice that.  

And, ultimately its all about Patrick.  The personal transformation alone is worth it, but then to raise money for a great kid...it doesn't get much better than that.  Personal indulgence at its best!

I committed at the start of my blog last year to not let politics get in the way of reading and writing.  So anything I write here is fact and you can draw your own conclusions.  Right now, the Steins and Patrick are in imminent danger of losing all their nursing care from the state Waiver program they are involved in.  They have already appealed once and lost.  They are now appealing in Circuit Court.  I am a glass is half full kind of girl, always.  But the state is not flexible.  The cost of care is about $300,000 a year to care for Patrick at home.  The state's recommended alternative to those who are not in a financial position to support that care, is to place the child in a hospital or nursing home.  They will pay for a long term hospital or nursing home for the child.  Without boring you with the numbers, it is hugely more expensive to pay for care in a hospital or nursing home.  The Steins are not the only family faced with these type of decisions.  A child, living in a nursing home?  My God.

The reason Pat has lost his Waiver status is because his trach is out and the state feels he no longer requires the level of care needed to qualify for their program.  Again, I'll skip the details, but if you are interested, message me and I will fill you in.  I was at the appeal with Patrick and his parents.  Remember, Patrick's primary goal was to get his track taken out, and it was last October.  After the appeal, when we were back in the van, Patrick said (blinked), "What exactly happened in there?"  I explained.  He said, "Why didn't anyone tell me I would lose my nurses if I lost the trach?"  I asked him if it would have mattered, would he have considered keeping the track.  And he said yes.  Imagine making that kind of decision.  At 19 years old.

So money continues to be needed to keep Patrick at home.  He's also on the verge of getting an awesome electric wheelchair that will give him so much independence and drive the rest of us crazy.  Money is needed for that.  And for continued therapy.

I really hate talking about money.  But its money to support a life.  And not a life in terms of  a beating heart kind of life, though statistically a person's life expectancy decreases hugely when in a nursing home, its about supporting a life in the fullest sense of the word.  Life as an experience, a calling, a roller coaster, a living vision, an opportunity to make your mark in time.  That's what you are supporting.  How cool is that????

So of course I welcome any contribution you can make.  Anything.  Our goal is to beat last year's $10,000.  But much more awesome for you, me and Patrick, is if you joined me and engaged YOUR buds to pitch in.  And we'll have a giant party!!


(if that's not the right sight, google it)

Sunday, May 19, 2013

Day 99 Seriously, am I really that old?

Got the bike out today and went for a 2 mile ride.  I know!  Its not that far, but more importantly, I did not have to put it in the easiest gear like I did last year and I instantly captured that flying feeling I had when I was a kid and took me 6 months to get to last year!  Whoo Hoo!  Now back to reality...It was only two miles.  And and in between each mile was a visit with Patrick.  And it was on level ground.  But still!

Ok, as most of you know I have been taking ballroom dancing lessons for about 6 months.  My teacher, Vlad, has a split personality between a prick and a dreamboat.  Mostly a prick.  Very hard.  Insistent on technique and dancing professionally.  Each little movement has to be perfect.  I on the other hand, want to blast ABBA and look like the dancing queen.

A couple weeks ago I went with one of my dancing buddies to a professional ballroom competition in Milwaukee.  Vlad had several students competing (all of whom one first place so maybe being a prick pays off) and we went to support him and his group.  Plus I was DYING to see a live competition.  Dancing With The Stars, Midwest version.

Little bit DWTS, little bit Dance Moms and a little bit Honey BooBoo.  And worth every minute.  Beautiful gowns, amazing professional dancers, adorable little kids...the whole scene.  My friend and I, I will call her "J" to protect the innocent, were really looking forward to Saturday night.  This is the professional competition.  Bar.  Formal dress required for the audience.  Bar.  A big night out for us.  Getting dressed up, mingling with dancing stars, fabulous entertainment and a Bar.

J and I each brought 4 outfits for 1 night out.  This was not planned or coordinated ahead of time.  4 outfits.  J brought 6 pairs of shoes and 3 pairs of pantyhose.  I brought 5 bras.  2 were strapless, however none of my 4 outfits were strapless.  I have 2 boobs and 5 bras.

We're like teenagers getting ready for the big dance...so excited.  It is at this sad juncture that the reality of aging rears its ugly head.  J can't decide which hose to wear because she needs to strike the right balance between being pretty and sheer and covering up her varicose veins.  It takes me 15 minutes to wiggle, pull, jump, kick my way into my high waisted, control top panty hose.  Getting into nylons, particularly control top, is not something the person you are having sex with should ever see you do.  Because you will never have sex with that person again.  Whatever mystery was left is now history.  Finally J has to pull up the back of my panty hose (the front always comes up fine but the back never does.  Why is that???) so I'm within an inch of having my nether regions bisected by a panty hose seam.  But they stay up by God!

J promptly runs the pantyhose she thought covered her varicose veins the best without looking like WWII support hose.  Luckily she brought "leg make up" to cover up the slight imperfections.  One make up applicator had a sponge tip and did a good job, but looked a little heavy.  That was quickly washed off, but now all the washclothes and towels were stained with leg make up.  The other choice was a spray make up that also worked well, except the spray nozzle was pretty wide and the entire floor, toilet and counter was covered in make up.  I turned around and J was on her hands and knees scrubbing the hotel floor and toilet.  The next morning she smuggled the washcloths out with a couple towels so we wouldn't be charged!

We had a great time!  Cocktails.  Cheering.  Imagining ourselves as the beautiful dancers.  Just a few more lessons with the asshole/dreamboat and we too would be competing, floating across the dance floors with steps so beautiful, so unique, so intricate the judges would surround us after we claimed our prize money, begging to know our secret.  A modest nod to Vlad who looks oh so Russian and oh so handsome in his tuxedo.

The lights come on and we filter out back to our hotel room.  The elevators filled with people recounting every step.  We are still riding high on the beauty of the night.  I gradually become aware of something being wrong with my boobs.  I realize one boob is in a cup and one is not.  One is just lying there in its unsupported splendor.  How the hell did this happen???  J and I step it up a bit in getting back to the room.  I had decided to wear one of the strapless bras to better accentuate my shoulders in my spaghetti strap top.  We enter our room, I pull up my top and one cup has flopped down, docilely lying down against my stomach, leaving my breast to fend for itself.  5 bras and I pick the one that goes on strike.

We are peeing in our pants laughing so hard.  I have a half bra, we turn and look at a bathroom painted in varicose vein cover up make up.  So maybe we aren't exactly like teenagers getting ready for the big dance....

So seriously, are we really getting old?  Who gives a fuck! Bring on the rhinestone, crystals and big fancy dresses!

And the Triathlon!!

Wednesday, May 1, 2013

Day 117 (Counting down this time) Hi From Patrick (and Mary Jo)

May Day May Day!!!  I know May Day has all sorts of religious and pagan ritual connotations, but I've always associated it with a cry for help...like when the ship is going down.  I am participating in the 2013 Chicago Triathlon since last year was such a huge success!!!  As always however, I need as much help as I can get....so May Day!!

The following is directly from Patrick to all of you:
"Hey gang, slow and steady wins the race.  Both of us.  I just always keep thinking never give up.  And don't worry, this time shall pass. The times when things are hard.  I realize things may not change as fast as I initially thought.  But some day it will be just a short memory."

That's Patrick.  Very rarely discouraged.  Never whines.  Never complains.  Sometimes acts like a little prick, but I'm beginning to think that goes with the territory of being 20 and not having a whole lot of control in your life.  Thank God I can complain and whine for both of us!

Just to recap:
1) 2012 Triathlon completed at the record breaking time of 4hrs 37min (lets not waste a lot of time on exactly which record I broke)
2) Been continuing to ballroom dance since November 3x/wk.  LOVE IT but still cannot breath after about 30 seconds of swing, salsa or cha cha.  Can go about a minute on rumba because its slow.
3) Realize although dancing 3x/wk may bring me to my goal of national ballroom champion at the age of 70, I don't have that long to get in shape for the triathlon.  Let me just state for the record being a national champion is not my goal but I like the way it sounds.  Dancing With The Stars however....
4) Have hired the MOST WONDERFUL TRAINER, Mary Nimrod.  She's local here in Glenview and is fantastic.  I see her 2x/wk.  Between her and Vlad (my Russian dancing teacher who has the patience of a saint even though he drives me crazy) I intend to cut off an hour and a half from my triathlon time and lose 25 pounds.

Done.  Said it.  Put it in writing.

A few updates on Patrick.  Patrick's trach tube was removed in October.  This was a huge step for him and he spent a long, hard year advocating for himself to his doctors.  He is now taking college courses. He's also beginning to see himself as bigger than his injury and thinking about where he will be in the world as a young man.  Thinking about entrepreneurial ventures and what he can contribute to the world.

Patrick and I also performed a stand up comedy routine at the Laughing Chameleon in Glenview in December.  I think I speak for both of us when I say it was a huge success.  If anyone knows anything about editing a DVD let me know.  We have a great video recording of the night but it needs some editing...not every line was a pearl!

                                                      Me and Patrick at the Comedy Club.

So much to talk about since I've been quiet since December.  I'll spread it over a few days.  Your peace and quiet is over!