Saturday, December 8, 2012


You know you're in trouble when you dust off your scale to avoid any possible bit of extra weight.  Really in trouble.

Date of the triathlon: August 26, 2012.  Last time I exercised: August 26, 2012.


Okay, that's not exactly true.  Its the last time I did any traditional type exercise, ie: swimming, biking, walking....the usual drill.  However, about 6 weeks ago I started taking ballroom dancing lessons.  Yes, I have my own private, Russian, child (27 years old) who is teaching me the Rumba, Salsa and ChaCha. LOVING IT!!!  Not sure he is, but I sure am!!!  Its also very hard...who knew?  Dancing With The Stars makes it look so easy, plus I really had no expectations of lifts (ha!), handsprings (maybe) or being suspended from the ceiling.  How hard could it be?  Very hard.

I started this because I was in immediate danger of losing every ounce of healthy momentum I had gained while training for the triathlon.  Just in case I have not mentioned this before, and I know by looking at me, its hard to imagine, but I HATE exercising.  Never have, never will.  I experienced an endorphin induced high one time.  Once.  That is not motivation to give up other endorphin stimulating habits, ie; eating, drinking and lazing around.  But I had come too far to allow myself to lose too much ground and every person, book, magazine article, View episode and Oprah when I could afford to watch her, says in order to be consistent with exercise, pick something you love to do.  Do I need to state the obvious?  That is a very shallow pool of options.  I do, however, love to dance.  Love it, love it, love it.

So, I went across the street to Northshore Ballroom, (which immediately shut down two days after I signed up) had my introductory lesson and signed up for the package.  Vlad, my private,  Russian, ballroom dance teacher said I at least knew my right foot from my left...most of the I figured, what the hell.  Although he was closing his studio, Vlad is still teaching out of a studio in Wilmette, so I was set.

So I have once again thrown myself into a situation where I have no experience, no knowledge and questionable potential.  Well, not entirely no experience...tap dancing lessons as a kid, a few high school musicals and I can move on the dance floor...all that clubbing that I do.  Plus, I have mastered the ability to dance without having to barely move my feet, so I never get out of breath.

Yeah, this, is not that.  Yet another leave your ego at the door less it be permanently squashed experience.  And the room is fully paneled in mirrors.  No matter where you look, there you are.  And I really don't have anything cute to wear to distract me from the 360 degree vision of myself dancing with my handsome, private, Russian, ballroom dancing teacher.  So I'm motivated to get in shape so I can buy some cute flouncy skirt and fishnet stockings like the other girls wear (I spy on their classes).

Also motivated to get in shape so I can just fucking DANCE.  You have to be in really good cardiovascular shape!  When I was training for the triathlon, I definitely improved my CV endurance, but speed was never the issue..  But you just can't salsa slowly.  It looks really stupid.  So does my teacher dragging my ass around because I'm about to pass out.

Apparently another key to successful dancing is using your "core".  I'm not exactly sure where or what my core is, but I'm pretty sure I haven't seen it in awhile.  Along with my clavicle.  I need a recognisance mission to find my core, clavicle and at least one hip bone.

 Just in case you are wondering, I AM doing the 2013 Chicago Triathlon.  Right after the one in August, the PR firm that covers the triathlon contacted me and said if I was going to do it again, they wanted to follow me and Patrick and help us raise more money!  Can't say no to that!

Another journey begins!

Wednesday, September 26, 2012





Every single one of you rocks!  Every single one of you is an angel! Every single one of you is a gift beyond description!  And together we are way bigger than the sum of our parts.

I've been waiting to post the final number of the fundraiser for Patrick, as checks continued to come in. But this is where we are at and we exceeded all of our expectations.  I've been part of a few grass root efforts for social change, all rewarding, but nothing like this.  This was money raised through word of mouth, Facebook and email.  I will never curse my computer again!

The donations received ranged from $15-$1000.00, with the majority being between $25-$100.  No publicity, no raffles or fancy dinners with free cocktails (not that there's anything wrong with any of those things!)  Just regular people responding to a need with money or time.  Its amazing and brings tears to my eyes as I write this post.

Patrick is doing great.  He just got back from Baltimore and is VERY close to having his trach removed.  He rocked Kennedy Kreiger (part of Johns Hopkins) and had everyone eating out of his hand.  AND, he actually admitted to missing me!  Once. And then immediately told me to put him in his stander.  I'll take it.

More good news.  I think I mentioned in an earlier post that the guys that announce the Triathlon are amazing and they were particularly kind to me, making a big deal over my finishing and making me feel like a million bucks.  I emailed them to thank them for making the day so special for me and sent them the link to our blog.  Well, both guys wrote back and had read some of the blog and were fascinated with Patrick's story.  They asked that if I do the triathlon next year, I let them know so they can follow us and really give a shout out!  THEN, I got an email from the PR group that covers the Chicago Triathlon and he asked me to definitely contact him ahead of time next year and he would cover Patrick's story and help us raise more money!  So.........



I'll keep you posted......

Wednesday, September 5, 2012


EVERYONE has been asking me, "What did Patrick say when you crossed the finish line"?

I finally have an answer!  I received a text from Patrick today reading, "I never thought you could do it.  Congratulations and thanks"!  I almost fell over.  This the Patrick equivalent of jumping up, hugging me, kissing me, renting a sky writer plane, taking out an ad in the paper.  He's  very understated..And I know he means that as a global thanks to all of you who have supported us and contributed!!  I do not have $$ totals yet, but should very soon and will let everyone know exactly how successful this journey has been.

Patrick was not able to be at the finish line because he is at Kennedy Kreiger Institute in Baltimore Maryland.  Everything his parents say about this place is amazing.  Constant positive attitude.  Innovative thinking.  They never say never.  Pat is well on his way to decannulation, which is the technical term for having his trach tube removed.  This place is expert at doing this and has had 100% success.

Patrick has felt for two years now, that his trach tube in unnecessary.  There are two camps of thought on this.  The more conservative camp is concerned for his safety and risk of choking if the trach is removed.  When we cough, the mucous we cough up, passes from our lungs, up the trachea and into our mouth where we spit it out or swallow it. (right now you are probably gagging...but its just the human body!).  You aren't even aware of this unless you have a bad cold or bronchitis.  When Patrick coughs, the mucous in his lungs comes out of his trach and is often suctioned out with a small tube.  Some folks are concerned that if the trach tube is out, we will not be able to reach his secretions and he may not be able to cough it up into his mouth.  And he could not choke.  Not good.

The other camp, headed by Patrick, believes that the trach itself is an irritant and creates mucous (true),  he would be better able to cough effectively without the tube and would be better able to swallow.  All true too.

But with the risk being choking, you can understand why some members of his medical team are hesitant to remove the tube.  But Patrick convinced me a long time ago he understands his body and I have learned to trust him.  This hospital has a great program with controlled protocols and if his trach is going to come out, this is the place.  So if you are praying people, believe in the power of nature, the stars, your own higher being...put in a few good thoughts for Pat.  He's very close to a huge milestone.

Patrick gets angry, but never overtly complains or feels sorry for himself.  One time, when I needed to go with him to an event that included many of his friends and former classmates, he was really pissed off I was going.  "No way"  "Do you seriously think you are coming" "No chance I am getting into the van with you".

When I asked him why he was so pissed off about me going with him, he said "do you think anyone else will have a nurse there"?

"Well if they are paralyzed, in a wheel chair and have a trach, they will".

He just looked at me.  He's usually not so adamant about wanting me to stay out of the picture.

"Just one more way you're different, bud"?


I get it.  We all get it.  We want to pick the times when we stand out, as well as why we stand out.  Sometimes you just want to be part of the group.  I'm proud of what I have accomplished in my life, but  sometimes standing out because I'm fat isn't my first choice.  Most of the time I don't care, because its my truth and at my age I've had a lot of time to figure things out.  But sometimes I would just like to blend in.  Magnify that by a million and you have Patrick's situation.  Most of the time he could care less if you are staring, asking questions or ignoring him because you don't know what to say.  This is his truth now and he accepts it.  But he's 19 and sometimes he wants to blend in.

Getting this freakin trach out puts him one step closer.

Wednesday, August 29, 2012

YA BABY!! Day 148

 I thought that perhaps my losing by blog into cyberspace last night was the universe's way of telling me to shut up and let the experience speak for itself...particularly since it is so hard for me to find the words to describe what the day of 8/26/12 or Day 148, was like.  So, as the saying goes...A picture is worth a 1000 words....

The horizon as the swim began.

My buddy Bill Nimrod and his wife Mary
caught me just I was starting the bike ride.
I thought I would have to walk my bike up
the first hill, but I didn't! Was able to ride up
the hill right out of the gate. My dad pushed me up the
other hills.
My friend Sue Leonis took this photo from
the North Ave bridge.  I was on my way to
Foster Ave.  The first 6.5 miles

6:15am Waiting to get in the water with buddy Courtney Callahan Loeb (waving).  This is
where the embarrassment began of being confused with Missy Franklin.  I did everything I could not to overshadow her.  She's so young to have her parade so heavily rained on.

The water was cold.  It was dark.  Could not see the finish line and my time would have been MUCH better if the lady next to me did not keep getting confused, turn on her back and start doing the back stroke IN THE WRONG DIRECTION!  I had to swim over and redirect her toward the finish line 3 times.  Seriously.

                           Now she got me waving back to her as I was heading  back to Randolph St, finishing up 13 miles.

The beginning of a very long walk.  
This was the part I dreaded.  I hate
walking. Its slow.  Its boring. And
I was a little tired.  I knew this would be 
my biggest challenge.
                                        My cheering squad.  Absolutely could not have done it with them and my   

My bud, Patrick.  He's what its all about.
   His mom, Colleen made this poster for me.
                       He still can't believe I did it. The night before he told me to get a DQ (disqualified) rather than suffer the embarrssment of a DNF (did not finish).  The little shit.

The best triathlon partner ever!!!! Stephanie, Patrick's PT

When they say it takes a village,
they aren't kidding.  This is the whole gang, friends, cousins, sister, brother, sister in law, niece, wife......the best and most loving support I could have imagined!

Patrick's mom, Colleen.  One hell of a woman and one hell of a mother.

Coming over the finish line.  I'm waving at the announcer because he's making a big deal over me.  People are so nice to you when you are fat!

This is a video that the professional photographers took as I crossed the finish line.  You can hear him saying my name and "Just Doing It".  It made me cry.
Worth every minute. Every tear. Every ache. Every minute of self doubt. Worth fighting not to give up when my Dad was dying. Worth continuing after a long 12 hr night shift.  After all this time, the concept of "worth" remains front and center.  I always knew Patrick was worth it.  I adore him.  What I learned is I am worth it too.

(not really, but it seemed like a fitting literary ending.  I'll be back!)

Tuesday, August 28, 2012

I am NOT withholding information! Triathlon was amazing. But now, I'm SCREAMING!!!

                                         Just spent over an hour writing a fantastic blog with great pictures and LOST THE WHOLE THING!!!!  How does that happen??? UUUGGGHHHH!!

                                         Have to step away from the computer.

Friday, August 24, 2012

DAY 129 A Trip to India

Stephanie and I swam in the lake today for the FIRST time.  Probably should have jumped on that a little sooner....but better late than never!  Its definitely a little colder and subsequently takes longer to warm up.  Also a little choppier, with waves and all.  Perhaps that's why they suggest getting into the lake earlier than two days before the big day!

I had scheduled a massage for today, anticipating I would need some help relaxing...HELLO!  The massage place is just around the corner, a two minute drive at the most.  So, I wore my pajamas.  Not anything with polka dots, or coffee pots on them, but ratty sweat pants and a tee shirt that I love.  No bra. Print my Group On certificate and I am out the door.  I get into the studio and it seems a little warm, but then again its probably just me.  I sign a waiver stating if they kill me with oil, its not their fault and I can't sue.  Fair enough.

I hand over my Group On certificate and start walking into the massage room.  The guy behind the counter says, "why did you just hand me a piece of paper saying that your delinquent parking tickets are now paid in full"?  Good question.  Evidently I pulled the wrong piece of paper off the printer.  Thank God for smart phones.  I was able to quickly look up my certificate and the wah was back.

The massage therapist tells me to take off my clothes, wrap the towel around me and sit on the table facing the windows.  It is now feeling really hot.  I do as instructed.  She gently knocks and enters the room.  Very lithe and seeming to float in rather than walk in.  I am now slightly sweating.  Let me take a little break here.  Women, you will understand my next statement.  Before going to the gynecologist or the massage therapist, I cleanse myself to the point of creating a sterile field on my body.  One step short of the autoclave.  So now I'm not so happy that I'm sweating because, even though I'm going to be covered in oil in about 5 seconds, I like to start from a pristine place.

"Its a little warm in here.  Do you not have air conditioning"?,  I inquire politely.

"Oh! Well, we like to create an environment similar to India.  Its all about India."

"The country of India?  The sweltering, poverty stricken country of India? In the summer?

"Yes.  It is the seat of wisdom.  We also do hot yoga here so we keep it quite warm.  Would you like me to turn on the air conditioning for you?"

Well, shit.  I'm not going to upset the wah and question the seat of all wisdom.  Plus, I truly have always wanted to go to India.  Been fascinated by India my whole life, ever since watching missionary movies in grammar school at St. Martha's.  However, I did picture myself wearing a beautiful, ethereal sari, not a heavy brown towel.

"No", I said, "Its fine.  I will just transport myself to a cool place in India". (Not sure one exists, but its the idea of the whole experience.

"Now do you realize Mary Jo, I am going to put oil in your hair"?

"Bring it on"!  I had just sat, two days ago, for an hour and a half with a head full of burning chemicals in my effort to look like Gwen Stefani with platinum hair.  My head was screaming for oil!!

From that point on, it was sheer bliss.  The woman is also an energetic healer and it was a wonderful massage.  I was in the mood for talking and she was fascinating, as well as being very good at what she does.

Once the massage started, I was completely unaware of feeling warm.


I scheduled another appointment for Monday afternoon, the day after the BIG DAY!!!!!

Going to bed early.  Tapering has begun.

Breathe.  Breathe.  Breathe.

Thursday, August 23, 2012

Day 128 PLATINUM!!!

Just in case,  at 53 years old,  250+ pounds and wearing a black/hot pink tri suit, I would NOT stand out in the crowd, I decided to color my hair PLATINUM!!!!  And I LOVE it!!!

Here's how it started.  I was paging through IN STYLE magazine because I am always, well, IN STYLE and came across this gorgeous picture of Gwen Stephani advertising for L'OREAL hair color.  And because it was an advertisement for L'OREAL, it even gave the color number!   No standing in the aisle at Walgreens holding up a lock of my already very short hair to a box of hair color, then running to the make up department to find a mirror and see if it matches.  I had the Gwen Stephanie color LB01 Extra Light Ash Blonde Les Blondissimes in my hot little hands.

I was over at my brother's house after Walgreens and excitedly told my nieces Kelley and Annie my plan.

"NO"!!!! they shouted in unison.

"Wait! What? Are you going to do it yourself"?

"Why wouldn't you go somewhere and have it done"????

Um, because it costs a lot of money?

"Its Gwen Stephanie's color!  Its beautiful"! I enthusiastically, and apparently naively, replied.

Kelley, the youngest at 13, responds, cocking her head ever so slightly and saying with just a tiny bit of pity, "Are you Gwen Stephanie"?

Anyway, with texting consultation from my hair stylist, Alyson Maginot, I persevered and it turned out great!

Four more days and its here!!! I am so nervous/ excited/scared/nervous/excited/scared! My biggest worry is that there is a time limit that I am not aware of.

Interestingly/ironically, Good Morning America this week has been all about the journey, not the destination.  So, as I've said before, in the event I inhale half of Lake Michigan, the journey has been more than worth it.  But it sure would be great to reach the destination.

Patrick update.  Patrick is at Kennedy Kreiger Institute in Baltimore, Maryland.  They heard of his case out there and they have a fantastic, cutting edge, pediatric neurology center.  We've been hoping he would be accepted there for sometime and as of last Friday at 6pm, it did not look like it would happen. Then, 10:00 this Monday morning, insurance approval came through and he was off!  The center uses many of the same techniques/theories that Greg and Next Steps uses.  If they do all they think they can do, it could be beyond amazing for Patrick.  Keep up the good thoughts and energy for him!!

Goodbye smooch just before they pulled out in the Cherry Red Van

BUT, I miss him.  It was so weird to sit in his room after they pulled out of the driveway.  So quiet.  And he won't be there on Sunday.  But he can follow me on an app and we will skype when I get home.

No matter where that kid is, he is in my heart and is my inspiration!

Tuesday, August 21, 2012

Day 126 SOOOOO nervous, cranky and bitchy!!!

Anyone reading this who prays, wishes, communes with the Universe, put my wife, Renee on your list.  She has to live with me from now until Sunday and it is NOT easy.  On top of that, no sugar at all this week and that makes me extra cranky.  I just had a meltdown and said she had to go to the grocery store RIGHT NOW for string cheese, diet coke and Tostito dipper chips....I know, I know, not the breakfast of champions.  However better than a Boston Creme doughnut from Dunkin Doughnuts.

My stomach hurts, my chest hurts, my shoulders and arms hurt.  I keep thinking I'm having a heart attack (I'm not).  And then Rosie O'Donnell goes and has a heart attack helping some poor, large size woman, out of her car.  OK, that is scary on so many levels!!!!  PS I know I'm not having a heart attack because my chest muscles when I press on them.  And I have notice that I frequently stop least deeply.  I'm going to read my cousin Kate's blog, BREATHE, because it seems fairly timely.

AND, OH. MY. GOD., our pest control person was just here because we saw a little mouse.  Turns out we not only have mice, but rats and BEDBUGS!!!!

Deep cleansing breath.  Deep cleansing breath.  Deep fucking cleansing breath.

Renee, bless her heart, has cut me up some watermelon, my cure for all things bad.

I am going to take a little nap.

Then, I am going to wake up with a new attitude and ride my bike to the beach to swim in open water for the first time.

I'm going to be just fine.  I'm going to be just fine.  I'm going to be just fine.

Thank you to everyone who has donated!!!  Patrick and I are so happy and grateful.  Please pass along the blog link: to friends and family.  Every dollar counts!!!

Friday, August 17, 2012

Day 122.....FLYING!!!!

When I was a kid I LOVED riding my bike.  I rode it everywhere.  I was my sole survival skill when my family moved 5.2 miles away from the house I grew up in.  I had just finished 6th grade at St. Martha's and Janet Faraci was my best friend.  I would jump on my bike and ride back to her house every chance I got.  I remember flying down Waukegan Road to Church St.  I would make it in less than ten minutes.  I always felt so free when I was riding my bike.

So naturally, when I started training for this, I assumed the bike riding would be...well, just like riding a bike.  It would all come back and I would be riding like the wind.  Wrong.  As mentioned in previous posts, I struggled.  Of course riding on flat tires did not help, but still.  It was not the flying feeling of my youth.  I thought perhaps it was typical of just not realizing your aging, so I asked my brother,

"Tommy, have you ever tried, as an adult, to go back to something that you loved as a kid and were really good at, and found out it wasn't easy at all"?


Asshole.  Of course the fact that he's remained athletic and continues to work out everyday may have something to do with it.  Still.

So today, for the first time, I combined two different events.  I went to the neighborhood pool (had not been there since I was 11) and swam 32 lengths, which was about a half mile.  In the spirit of full disclosure, I do not want you to think that I did 32 continuous freestyle laps.  I never stopped moving, but there was a lot of water being tread, breast stroke and something very close to dog paddling, involved.  It took 40 minutes, which frankly I was thrilled about.  Then I was momentarily REALLY excited because I thought the swim part of the race was only a quarter mile and I was actually over prepared! Then I went on line and rechecked.  Wrong. A half mile swim.  Now, I'm back to just plain prepared.

 I got on my bike and rode about 4 miles home.  It did not start out well.  I was crossing Lake Ave, a VERY busy road.  And I was crossing at the light, so four lanes of traffic have all stopped to allow me to cross.  When I first started training, I walked my bike across the intersection, but now I'm much better at hopping (not sure hopping is totally truthful) on and off, so I ride across.  Should have stuck with walking.  The light turns green, the little green walking person lights up, the beeps for the blind start and I push off.  As I go to sit back, I can't get on the seat.  It appears my bike shorts were a little droopy and when I would go to sit, the pointy part of the bike seat would get stuck in the material between my butt and the bike padding.  So, I'm stuck in a perpetual half standing position in the middle of Lake Ave.  The days of my riding my bike standing up are long gone.  I had to stop.  Restart and push up extra high so the bike pad cleared the seat.  I do not want to EVEN imagine what that looked like.

However, the good news is, I got my biking groove back!  Somehow, I finally found the right gear (3 on the left and around 4 or 5 on the right) and I was zipping along.  Just like when I was a kid!


Tuesday, August 14, 2012

There's So Much You Can Do: DAY 119 OH MY GOD, its almost here!!!

There's So Much You Can Do: DAY 119 OH MY GOD, its almost here!!!: I CANNOT BELIEVE IT IS ONE WEEK FROM THIS SUNDAY!!!!  No more thinking, "oh, I've got plenty of time"!  Or, "I'll tackle that in June".......

DAY 119 OH MY GOD, its almost here!!!

I CANNOT BELIEVE IT IS ONE WEEK FROM THIS SUNDAY!!!!  No more thinking, "oh, I've got plenty of time"!  Or, "I'll tackle that in June"....  Its FREAKIN here...almost.

On top of everything else, my neighborhood pool is closed for 10 days for maintenance!!!  Do they not understand I have to swim a quarter mile in 10 days???

As usual, when I am at my peak spasticness, Patrick grounds me...of course not intentionally by being reassuring or anything absurd as that, but by his very existence.  Today we went to Next Steps out in Western Springs where he does the Lokomat and walks.  Then they do mat exercises.  They place Patrick on his side, with his head an shoulders over the edge of the mat.  His arm is placed on this vibrating device which maximizes the nerve and muscle activity.  His shoulder is supported by his trainer and Patrick, INDEPENDENTLY, holds his head up and turns his head.  I was so pissed I did not have my phone to video this today because its very hard to describe.  Once you see it, you will understand why its so amazing and such a huge step for him.  But back to the inspiring part.  When Pat is doing this, his whole mind and body are so focused.  The effort to hold up his head creates nerve stimulation throughout his body, so even his feet are shaking.  Have you ever exercised so hard, particularly if you have to hold a position for any length of time,  your muscles start shaking uncontrollably?  This is what happens to his whole body.  That's how hard he works.

Connor Dwyer, the recent gold medal swimmer from the Chicago area, is a friend of Patrick's.  He was interviewed on TV this morning and said he is in the pool for 2 plus hours every morning to start his day.  I was already overwhelmed at that, since my 32 laps are killing me.  Then, while watching Patrick, I was thinking how his workout for 2 hours in physical therapy is exactly as much of a work out as 2 hours of swimming is for Connor.  Total focus.

The point being I shut up.  As if Patrick playing the quadriplegic card isn't enough to humble me, the folks that work with him are amazing.  A quick shout out to Josh.  Josh is a young kid (somewhere from 17-22 is my guess) who's dad had a horrible experience with rehab at Rehab Institute of Chicago (don't get me started).  As Josh said, "they just teach you how to live like this...not how to get better".  His dad eventually went to Next Steps and had a much better experience.  Josh attended his Dad's PT sessions with him, helping out with his dad.  After his dad graduated, the staff asked Josh to stick around because he was such a great help.  This kid is amazing.  So mature, so compassionate.  He helps out a lot with Patrick and does such a great job.  Again, humbling.  His trainer Thomas, also so knowledgeable, so compassionate.  Also a young guy.  These are people that could be training for big money, yet they choose to work with people whose progress is often minuscule.  I'm not sure I would have the patience or commitment.  Ok...just wanted to put that out there.

Jeez, sorry this blog is so serious!  Just one more thing.  When I started this I said the journey was more important than the race itself.  One of Patrick's friends, Ed Reardon, warned me about this.  He said, "You may not be able to finish.  If you don't, is this still worth it to you".  I said yes and I still mean that.  Having said that, I will be very disappointed if something happens and I don't finish (I will not EVEN entertain the thought), but even now it has been worth it.  Today Patrick was on the Lokomat and needed suctioning.  The Lokomat is elevated, not even with the floor.  I had to jump up onto a high (for me) step and then straddle the treadmill to suction him.  And I did it without even thinking AND without killing myself.  That is huge!!!  If you've never been overweight or out of shape, its probably hard to appreciate what that feels like.  It feels like freedom.

When I first started working with Patrick a year ago, it was very hard for me to work an 8hr shift.  Its a physically demanding job, but particularly hard for me.  I also work part time as a hospice nurse at an inpatient unit.  I work 12 hour night shifts there.  When I first started there over a year ago, I would pull into my driveway at 8am and I literally sit there because it hurt so much to get out of my car.  There are two steps to my front door and it took everything I had to walk up two steps.  Once I was inside, I had to walk up a flight of stairs to get to my bedroom and go to bed.  If I did not have a railing going up the stairs, I don't think I could have done it.  I literally pulled myself up the stairs.  I read this now and I wince a little bit.  Perhaps too much information.  I committed to being honest about this process, knowing there are some of you that may be horrified, saddened, surprised, even a little disgusted.  At the time, I really didn't think about it much.  It was my life and I didn't dwell on the negatives.  The negatives, however, were killing me.

Now, I work 12 hrs and come home tired but not in any pain.  The stairs are no big deal.  Same after 8 hrs with Pat.  Tired, but not dreading having to get up to bed.  Things still ache and jumping up and down with him sometimes throws my body in goofy positions and I feel it.  But overall, its a whole new experience.  I hope when you read this you are not horrified or saddened.  If you are disgusted, you've got issues bigger than mine.  I want you to feel the joy with me.

The joy of freedom.

HUGE THANK YOU to everyone who has donated!!!!!  Please pass this along.  By giving, you are actively participating in Patrick's journey to freedom.  Its a very sweet and amazing journey that you are joining!!!

Sunday, July 29, 2012


Just got in from a 12 mile bike ride with my best time yet of 1 hr 15min!  STOP LAUGHING!!!  When I started out it was 6 miles/hr!   Though in retrospect, I think a lot of that was on low or flat tires.

Last week in San Diego while I was on the hot, dusty, rocky, rattlesnake infested trail, I pulled a leg muscle walking uphill.  That set me back slightly.  However, the limping and dragging of my foot turned out to be a safety feature.  The kicking up of dirt and rocks while I limped warned the rattlesnakes I was coming and to get the fuck out of my way.  I am serious.  Right now is the peak of rattlesnake season in SD.  The paths are very twisty and you can come up on a snake VERY fast and the little sucker does not have time to scurry into its hidey hole.  AND because humans have been shooting them or chopping their heads off with shovels, their instinct to rattle is beginning to evolutionize its way out.  I think I may have just made that word up since my spell check just reared its head.  The point being, the rattler's instinct was to rattle to warn people to stop, but now the rattle has led to its death.  So they stop rattling and we get bit.  Therefore I personally resort to making noise when I'm hiking.  Singing, talking to myself, or in this case limping.  Same idea as wearing bells when you are walking in bear territory.

I returned home to Chicago, having narrowly escaped being bitten by a rattlesnake, and sought out the expertise of Patrick's PT Stephanie, and my triathlon partner, to help my leg.  She did a similar treatment to my leg that she does each session with Patrick and, oh my god, did it hurt.  I had to ask her to stop because I was going to start yelling in the clinic.  My pulled muscle was VERY minor, believe me.  And her treatment helped a lot.  But it hurt like hell.  Patrick experiences this several times a weak and never flinches.  You may wonder how we would know if he was flinching since he is paralyzed, but he lets us know with his eyes that something is wrong.  Never even blinks.  Stephanie frequently stops and asks him if he is in pain.  90% of the time he says no.  If he says yes, she asks if he can handle it.  100% of the time he says yes.

The kid is a beast.  I do not know how he does it.  NEVER complains.  A pain in the ass sometimes, yes.  But NEVER a complainer.
This is my favorite video of me and Patrick.  All we are doing is laughing.  Its one of the greatest reasons I love him so much and love spending time with him.  It is quintessential Patrick.

Two Sundays ago I had worked the night shift with Patrick.  So I had started at 8pm on Saturday night.  We had had a great night.  Talked, laughed a lot.  At 6:30 Sunday morning he wakes up, starts laughing because he sees me.  The he starts with his list of demands: turn on ESPN, do my chest PT, get me dressed, I want to get into my chair.  My response, "Jesus Patrick, it is very early on the day of our lord.  Otherwise known as the day of rest.  Can you cut me a break here? I've been here 10 and a half hrs".  His answer, "No".

I'm not sure what I said or did, but we started laughing (may have been my imitation of the ESPN announcers).  Then we're just talking.  I turned around to get his clothes and when I look back, he's totally laughing again.

I said, "what's so funny? "
He said, "Just you."


I have never done fundraising before.  I have hosted benefits, MC'd benefits, been the entertainment at many fundraisers, but I've never spearheaded a fundraising event.  So I do not know strategy.  Consequently, I may be a huge pain in the ass and annoying.  I apologize ahead of time.  But I need you to contribute.  I need you to share this blog with all your facebook friends and email the link, , to all your non-facebook friends and families.  I you own or work for a company and would like to donate $300 or greater, you get your name on our tee shirts...I know this a HUGE incentive.  You can also donate $300 or more and not have your name on our tee shirts.  Whatever anyone wants!!!

Much, if not the majority, of the treatment Patrick needs to significantly improve, and he ABSOLUTELY can improve, is not covered, is is minimally covered by insurance, private or public.  The reasons why they are not covered is a bigger battle to be fought by someone else.  Right now, I care about him.  Patrick's desire is to be able to use some of his foundation money to buy a new computer that he will be able to use for college.  Its also important to remember that any progress Patrick makes benefits everyone else in similar situations.  Its the trailblazers that make a difference.  Those that are willing to defy convention, tired, medical wisdom, that clear a new and exciting path.  Christopher Reeve's treatment was not covered by insurance.  He supplemented his care with his money.  Much of that research is helping people today, though he never benefited from it.  STILL, much of the care and treatment that works, is considered out of the bell curve and not covered by insurance.  Most of us don't have the independent wealth of Christopher Reeve.  But we do have the same spirit of generosity.  Please donate.  Please pass this along.



Saturday, July 21, 2012

Day 95 Gotta Move My Ass!!!

Every bit of whatever is left of my ego is begging me not to post this...but why develop a sense of pride this far into the game??

I confess to lately doing EVERYTHING possible to avoid exercising.  Every excuse, every diversion, regardless of its validity or even truth!.  I'm tired.  I'm grieving the loss of my dad.  My back hurts.  I work hard and deserve a break, goddamn it. I might injure myself and then NEVER be able to exercise.  I work nights and sleep is much more get the idea.

Yesterday I reached a new low even for me...I think its safe to say a new low for anyone.  I bought AND watched a DVD on how to swim.  I know how to swim.  I'm actually a pretty good swimmer.  I am, and I'm being completely honest here, a human bobber.  I will digress for just a moment and explain.  My one and only god given talent is that I can float anywhere there is water.  And not just float on my back like the rest of you mundane, average folk, I can float vertically.  I can float, standing up, in deep water, and not move a muscle to keep myself floating.  I can float vertically and read a book in the middle of Lake Michigan. Don't run to call 1-800 GuinessBookof Records.  I would feel embarrassed flaunting a natural gift that I was born with.  And don't feel bad that you, too, cannot perform this feat.  God chose me, above all others, to be a human bobber;  otherwise known as an extreme floater.

Another slight digression, though related.  If I already wrote about this, I apologize.  Two years ago I was on vacation in Fiji, with my best friend Maria. We went on a long jungle hike that ended at the most magnificent waterfall.  I am a waterfall nut.  The guide that was with us was a native Fijian who had never left his island.  Amazing, wonderful, fascinating man.  Little did I know he would find me equally fascinating.  We were swimming under and around the waterfall. The water was deep and over all our heads. I turned to wait for Maria to come out of the waterfall and realized our guide, Simone, kept diving under the water around me.  I thought this was a little odd and wondered if this was some Fijian water game I was supposed to join.  I assumed a pleasant and eager look on my face, like "sure I'll join in this native, yet odd game", not wanting to appear the stuck up American.  After several dives, he popped up and asked, "how do you do it"? "Do what"? "Stand in the water and not move"?

I had assumed my normal position of floating standing up.  By the next morning, all the employees at our hotel came up to us and asked me to demonstrate in the pool.  This was a small island and the word had spread that the "fat, white American lady had a magical gift"!  I was famous for a week!  And magical!

The point to all this being, not only can I swim, I'm virtually unsinkable.  Yet, I found it absolutely necessary to order, pay for, wait for delivery and watch a DVD on swimming.  10 Easy Lessons to Swimming Freestyle. Sigh.

 I'm writing this from our beautiful home in San Diego.  Its sunny, breezy and our neighbors have let me use their pool to train.  I am getting up, going for a long walk and then going in the pool.  I am getting up, going for a long walk and then going in the pool.  I am getting up.....

In one, very small attempt at self defense, the swim DVD is supposed to be a somewhat Zen approach to swimming.  And I am nothing, if not Zen.

Wednesday, July 18, 2012


                      PATRICK WALKING
This is why I am doing the triathlon.  This is why Patrick works so hard every day.  This is why we contribute even when our wallets are thin.  This is why those of you who are joining me are joining me.  This is why Greg, Stephanie, Sakina, Thomas, Patrick's Physical Therapists, work so tirelessly with him.

This machine is called a Lokomat.  Its genesis was with Christopher Reeves.  On this machine, Patrick walks.  He feels the treadmill underneath his feet.  He feels his knees bend.  He feels his weight being supported by his hips, knees, ankles and feet.

Amazingly, this therapy is not yet conventional.  It is ground breaking and has not made its way into every rehab center in the country.  The same with the work Greg does.  Despite having astounding results.  The reason is because it takes time.  Its about repetition and time.  We live in a health care culture that values speed and perceived financial savings.  This what your dollars will go towards.  This therapy will only be covered by insurance for a short time.

At the end of this 2 hour session, Patrick is sweating, his muscles are shaking.  This is a tremendous work out for him.  Once again, if he can do it.  I can do it.

Push the DONATE button!

There's so much you can do.....

Monday, July 16, 2012

Day 90 Quick, Quick, Quick!!!!

This is really quick, with more to follow later today.  BUT, I wanted to let you all know I now have a "DONATE" Paypal button connected to my blog.  You can click on that button and the money will go directly to the charity account for Patrick.  You will receive a letter for the IRS at the end of the year.    The account is currently run through Our Lady of Perpetual Help parish.  They administer the account and ALL money goes directly to Patrick.

As many of you know, insurance is covering less and less of our health care costs.  There are so many therapies, machines, evaluations, classes....the list is endless, that Patrick needs and are not covered, or are minimally covered by insurance.  Your contributions will help make many exciting dreams a reality for him.  I will also work on getting a wish list from him, so you know directly from him, what his dreams and goals are.

Your donations cannot be too little or too big.  Any businesses that contribute more than $300.00 will get their name on the custom made, custom designed (by  me and Patrick) tee shirt that we will be wearing for the triathlon.

Be part of a journey of a lifetime.

Tuesday, July 10, 2012

Day 84 June 22, 2012...Freedom!!!!

I have been remiss!  My book club gals essentially told me to get off my ass and get back to my blog...not in so many words, but I got the message and they are right.  And its not like there's nothing to talk about!

So, I believe it was on day 12 I said this journey is not about size and pounds.  My exact words were "Its freedom to move and live in the world as fully and freely as I want." Renee and I took my nephew Timmy on a week's vacation to LA, June 14-21.  Each summer after one of my nieces or nephew finishes their freshman year in high school, Renee and I will take them anywhere they want to go in the long as their parent's agree.  Patrick picked Alaska, Annie picked Italy and Timmy picked LA. Apparently it is normal for almost 15 year old boys not to talk much.  So, I'm not exactly sure why he wanted to go to LA, but we went and had a great time.  There were a few things I was worried about.  Typically when I fly, I need to use a seat belt extender...only about an inch or two of it, but still.  I have not put down my tray table in years.  It lands on my belly and everything slides backwards into the seat pocket in front of me.  These things don't rock my world and I don't spend a lot of time stressing about it, but I never want someone I love have to have a front row seat to my adaptations.  Especially when it is one of my nieces or nephews.  I'm discreet, they're discreet, but still.

We got seated and I casually reached for my seat belt, pulled it over like it was no big deal, while mentally holding my breath and SUCCESS!!! No extender needed and even about an inch to spare.  Got tired of holding my Kindle and wanted to rest it on the tray top.  Did I dare tempt fate twice?  Why not?  SUCCESS!!!

I cannot tell you what it felt like to be normal.  Not to stick out...literally and figuratively.  Clearly I don't mind standing out in a crowd, but its nice to pick the circumstances.

We landed in San Diego and spent the night in our home and set out for LA the next morning in Renee's custom graffittied car.  Yes, you heard me correctly.  She's an artist.  We stayed in Santa Monica, just a couple blocks from the famous Santa Monica Pier.  We got to the hotel, dropped off our stuff and walked to the pier to check it out.  Had dinner, jumped on the Ferris Wheel which is awesome.  Then Timmy and I headed over to the roller coaster.  At the last minute he changed his mind and we went on this death defying torture ride (picture to left).  We climbed into our row, I'm laughing, he's telling me to shut up, and we hear the lock on the safety bar release and we are instructed to pull down the bar until it locks again.  Shit.  In a split second I realize there is a very real possibility the bar will not close on me.  This has happened before and was one of the few times I truly was embarrassed and devasted.  I do not like to be stopped.  All this is running through my mind as I suck it in, push down on the bar and SUCCESS!!!  NOT with an inch to spare.  Thank god fat squishes.  But I did it.


Thursday, June 7, 2012

Day 68 First Swim Training...OMG

Okay.  Today was my first official swim workout with Greg.  I thought I loved swimming.  OMG.  I am so sore.  I am sore in places I never imagined being sore in.  My breasts hurt.  Not the lower part of my boobs that are rapidly approaching my knees, but the upper part of my boobs.  I suppose that area is known as the pectoral muscular area.  I'm not used to thinking of my body in terms of muscular areas, but I think I am correct...I've consulted an anatomy chart and yes, it is my pectoral muscular area.  Who knew?

DID I MENTION MY ARMS? Not just sore like when you try to fit too many, stretched to the limit, circulation stopping, plastic grocery bags full of soy milk, agave nectar and kale in your hands, but to the CORE, the core you never knew you had, sore.  I literally was not able to lift my shirt over my head to undress for the steaming hot shower I was lusting after.  I had to reach under my shirt to release one arm, then the other.  Now the shirt is hanging around my neck and I absolutely cannot lift my arms to get it off.  Thank god for Newton (or was it William Tell?) and gravity.  I very gingerly bent over and shook off my shirt over my head.  Then it hurt to lift my leg up over the side of the tub to get into the shower.

I was in the shower long after it became therapeutic, just to avoid doing the whole thing again in reverse.

I am going to retire on my brilliant dream of having a water proof, Lazy Boy recliner on wheels, that can be conveniently wheeled in and out of my enormous, walk in shower.  Actually, as I'm writing this, I realize this is exactly the set up Patrick has!  Not quite a Lazy Boy, but a reclining chair on wheels and a huge walk in shower!  OMG, I wonder if he will let me use it????

I have to go now because I still have to walk up the stairs to bed and I don't know how I'm going to do it because my arms are too sore to haul my fat ass up by the railing and its way too late for any more physical challenges.  My living room couch is not looking too bad.

Good night.

Day 67 Patrick Rocks It!!

To better understand yesterday's enormous leap forward (Wednesday, June 6), let me recap some of Patrick's medical issues.  Patrick is paralyzed because an aneurysm burst in his brain and flooded his brain stem, the most fundamental part of the brain, with blood.  Because the blood escaped the circulatory system and oxygen was not being delivered in a way  his brain cells could accept, that part of his brain was damaged.  When we go to make a purposeful, or voluntary movement, the idea begins in the brain, travels down the spinal cord and spinal nerves to the part of the body we want to move.  If you have had a spinal cord injury and the spinal cord is severed, the desire to move begins in the brain, travels down the spinal cord and nerves, stopping where the cord is broken.  So if your spinal cord is severed at the level of your waist, you can think about moving any part of your body above your waist and your nervous system obliges.  You can think about moving parts of your body below your waist, the signal to move will travel down to the waist and stop.  The rest of the spinal cord cannot receive the signal because it has been severed.

Patrick's injury is the opposite.  His spinal cord and spinal nerves are intact and waiting for the brain to send a signal telling them what to do...walk, talk, write, ride a bike, drive a car.  The signal cannot get past the injured part of the brain and communicate with the spinal cord.  BUT, because the cord wasn't severed, and is waiting to receive a signal, it is possible that Patrick's brain can figure out an alternative route.  By pass the injured part and still communicate with the spinal cord.  Not a given, but possible.

Greg describes it as a kinked hose.  You can turn the water on (initiating a thought to move), but a kink keeps the water from flowing steadily through the hose.  So Patrick's neuro signals start in his brain, but get disrupted when passing through the brain stem.  But because Patrick has shown improvements, like being able to lift his right arm and move his right fingers, we know some signals are making it through or around the injured brain.  Sticking with Greg's analogy, sometimes the kink unkinks and the water can flow through the hose.

Yesterday Patrick was working with Stephanie, a great physical therapist (has her doctorate in physical therapy...who knew?), my triathlon buddy and a blast.  Its a little complicated to explain in detail, but Stephanie would turn Patrick's head to the right.  Patrick then pushes against her hand, resisting her, while at the same time, I have his knee bent with his leg parallel to the floor and he is trying to push against my hand.  HE DID IT!!!!!  He was able to push my hand back with his foot!!!  Getting any movement, much less controlled movement in his leg, has been very difficult.  And then, HE DID IT!!!!

Now, the back story is that Patrick was in a really bad mood for a variety of reasons.  When he is really pissed off, he closes his eyes and refuses to talk (with his eyes).  He also does this when he's bored.  So he was refusing to open his eyes for most of the session until the end when he pushed my hand away and was able to repeat it several times.  Stephanie and I went nuts!  Yelling, clapping, just generally going crazy.  Patrick was not able to maintain and we got him to break the silent treatment.  He was smiling and laughing and it was an absolutely fantastic day!!!

He's had a rough couple of weeks.  He's started summer school without much of a break.  He's frustrated that his trach isn't coming out as quickly as he would like.  His friends are home from school and I know he would love to be hanging with them and getting into trouble.  A friend of his died last Friday from a head injury due to fall while drinking.  The wake was Tuesday afternoon and the last thing Patrick wanted was his nurse accompanying him to the wake and funeral.  Just one more indication of being different.  I promised to wear a bag over my head and only communicate with him and his friend Luke with eye contact and hand signals while committing  to walking at least six feet behind them.  I also explained to Patrick that though I was willing to remain as unobtrusive as possible, that is a very difficult demand for a woman of my size and beauty.  He laughed.

Another amazing milestone and effort from Pat.  Over a year and a half in the making.  I can, at the very least, finish the triathlon.

Wednesday, May 16, 2012

Day 46....DYING!!!!

You know what drives me really crazy, is when someone yells "didn't you hear me????", when you clearly did not hear them.

Today was a freakin exercise marathon.  It was my first day back training with Greg and his crew after being gone for about two weeks.  I was stressing because there has been such a big gap in my work out...suddenly August 26 seems around the corner...I will have regressed so far I'll never get caught know the mental drill.  So I decided to jump right in and ride my bike to the gym.  It is 3.7 miles from my house, so says  my iPhone.  How bad could that be?

O.M.G. I took all busy streets because I could not figure out a more civilized way (I did find an alternative route on the way home...I was highly motivated).  There would be sidewalk on one side of the road, then that would end.  I would have to stop, get off my bike, check traffic and cross over to the other sidewalk.  Stop.  Repeat.  Stop.  Repeat.  Realize the This American Life podcast is no longer playing in my ear.  Realize I have dropped my iPhone along the way.  Stop.  Apply kickstand. (of course I have a kickstand.  I realize the serious bikers do not, but there just is not a good reason not to have a kickstand).  Retrace steps until iPhone is found.  Walk back to bike and continue.

I am less than a quarter mile from the gym, on Dundee Road.  Very busy street.  I had gotten off my bike to cross the road in the middle of the street.  There was a side walk on this side going up a very slight incline.  Getting off the bike was a big mistake.  When I jumped off, I realized my legs were shaking and I was pooped!  I tried to get back on and push off going up the VERY slight incline.  Did not work.  Pushing, pushing, pushing off and I cannot get my fat ass back on the seat.  All in front of heavy traffic on  Dundee Rd.  Totally humiliating.  So, I walked my bike, very cavalierly, like nothing was wrong, up the little hill and was able to get on going down hill.  Thank God!

Did manage to get through my usual routine, including 10 minutes on the StairMaster, with a 40 second break after 5 minutes.  Greg added a new balance exercise that I managed to complete without killing myself.  Caught up with the girls...including Stephanie, my triathlon buddy, who is eons ahead of me in training.  All in all a pretty successful day.  Until I saw my bike and realized i had to fucking ride back home.  Shit!

Luckily on the way home I did figure out how to use side streets, although one of those streets was really a private driveway, but by this point I was exhausted and mean.  If someone even thought of yelling at me because I was on their "no outlet" property, one look at me would have changed their mind.  Just a few blocks from home, I was getting back on my bike after having crossed a busy intersection.  I have to get off my bike and walk across the street if there is traffic.  I am always mesmerized by the serious bikers who have those clip on shoes and manage to sort of hover, not really pedaling, not really stopping, while they wait for the light to change.  I'm definitely not there yet. Anyway, I was remounting (as they say in the biz), and apparently cut off a biker who was coming up on my left.  This brings me back to "didn't you hear me????"  No, I didn't hear you.  If I did hear you, do you think I would have run into your skinny ass??  Of course I'm apologizing repeatedly, the whole time thinking, fuck you and your fancy biking pants too.

I will tell you this though, I need to get real biking shorts/pants, with a significant amount of padding.  I am about one good bike ride away from a labial infarct.

Monday, May 14, 2012

Day 44....Feeling Subdued

Went for a 7 mile bike ride yesterday....which took almost an hour!  I'm blaming it on the wind.  I'm also trying to ride on the hardest gear so I can build up my endurance and strength.  What if August 26 is an insanely windy day...a real possibility in the Windy City.

I learned this trick from Patrick.  Patrick and I have had an ongoing argument for months.  When he is in the stander, he prefers to not wear his neck brace and have his head fall forward.  Then the entire time he is on the stander, he works on lifting up his head.  I maintain that is a ridiculous strain on his muscles. Think of a baby who has to have its head supported until it gradually builds up the strength to hold up its own head.  I've used every analogy possible...think about when you were captain of your swim team, would you throw a kid who didn't know how to swim in the deep end???  Actually, I did not wait to hear the answer to that one.

Needless to say, it is a battle I have not won.  So, if you can't beat 'em.....

Patrick was at my Dad's funeral service on Friday.  It was so wonderful to see his face as he made his way up to the casket with his mom.  I told him I was giving the eulogy and asked if he saw me start to cry, to start coughing to create a distraction.  He agreed.

Its a complex situation having Patrick as a muse.  There really is no give.  My Dad has been my hero my whole life.  As soon as I was old enough to understand the finality of death, I dreaded the day I would lose my Dad.  My Dad, being my Dad, gave me time to work it out.  The day I never thought I would survive, I did.  The grief I thought would kill me, didn't.  That is not to say I wouldn't prefer to go up to a lake house by myself for the next year.  But Patrick makes that impossible.  He wakes up everyday determined to be stronger than the next.  How do you give up in the face of that?  You don't.

So, I am off to wrestle with my sports bra, which should cover a few hundred calories right there.  Its a gorgeous day.  I will exercise.  I will call Greg and set up appointments for this week.  I will continue and complete the Sprint Triathlon on August.

What I have learned in the past week since my Dad died is death is not final.  Energy and matter cannot die.  I've become very Shirley McClainish the past several weeks (woo-woo for those of you too young to know Shirley McClain) and imagine my Dad all around me.  Yesterday on the bike path there was a deer that seemed to appear out of no where.  Looked right at me and didn't run.  I thought of my Dad.  If my Dad had lived, he never would have been able to see my finish in August.  All his energy would have been taken up with breathing.  Now he will be with me the whole event.  I will cross the finish line with him cheering in my ear and waiting with open arms.  Even better.

Saturday, May 5, 2012

Day 35 (!)...Alive and Kickin'

I'm still here!  Have not given up!!!

It has been a crazy couple of weeks.  I was in San Diego with Renee and came home a few days early because my Dad is not doing well.  Just a little bit more tired every day.  He also had a mini stroke (TIA for those of you in the biz).  No residual effects from that...just fatigues very quickly.  So I have neglected my blog!

Some statistics:  First month wt loss:  8 pounds

Struggling with desire for sugar when things get emotionally tough.  I realized the other day that the last thing I am is draconian about anything so perhaps I could ease up on myself just a bit.  One doughnut (that damn magnet at dunkin doughnuts) did not lead to a dozen.  And because I am not nearly evolved as I would like to be, the doughnut helped.  Not for long.  But for a few moments I felt calmer and happier.  I know the goal is to get that feeling from exercising, meditating and breathing.  I will not stop working towards that goal.  Baby steps.

My eye is on the prize of finishing the sprint (Patrick insists I clarify it is the sprint distance, lest anyone get the idea I was competing in the full distance) triathlon, introducing everyone to Patrick, his journey and mine and raising a ton of money for him.

Day 21...Adventures with the sports bra

Today marks 3 weeks on this journey (well actually tomorrow by the time you read this because I am working the night shift at my hospice job).  I can't believe how fast it has gone and I'm actually going to say, out loud, how quickly I feel my body has changed!  I was at physical therapy with Patrick on Saturday and Greg, his therapist and my trainer, told me in his classically direct/blunt way, there was no need for me to be standing around and why didn't I get on the StairMaster and try for 5 minutes. FIVE minutes???  What happened to our deal of increasing by 15 sec increments daily?  I had done 4 min 15 seconds the day before and was still feeling pretty damn proud of myself.  I looked at Patrick, giving him the eye indicating this was an opportune time for a coughing fit...absolutely no cooperation from him.

So without any excuse not to, I got on the damn thing and I swear to god, 5 minutes came and went in no time.  I jumped off the second (literally) the timer hit five minutes.  I could not believe it.  3 weeks ago I could not complete 3 minutes without stopping to breathe and drink.  Each of those minutes feels like a mountain peak...seriously!  I was leaning against the evil machine, basking in my new found glory, when Greg said, "do 5 more".  "Minutes"????  "yes. you can do it. do it".  Much laughter from the ever supportive, empathetic Patrick.  And so I did.  I DID IT!! Five more minutes on the devil spawned machine!  A total of 10 minutes with just the teeniest break in between!

A few statistics:  *Total weight loss for 3 weeks....5 pounds
                      * Grade on the "I Love My Gay Nurse" English paper....A!! Patrick wanted to be sure I  mentioned that.  Apparently the teacher and English class enjoyed the paper and Patrick's gay jokes!

I would like to deviate for just a minute and discuss my sports bra.  I have seen every Oprah show on how to be fitted for a bra, including her game changing episode on sports bras.  She wholeheartedly endorsed the Enell Sports Bra, specifically designed for large breasted women.  I spent half a paycheck and ordered it.  The web page I ordered it on, as well as the packaging, has all kinds of advice and instructions on how to put the bra on, it will feel too tight initially, don't worry it will feel better after a few tries.

I get just a little bit concerned when a bra comes with instructions.  I've been doing this now for about 43 years or so and I think I've got it down.  However, they aren't kidding.  The bra not only needs instructions, but pictures and a VIDEO!!  I watched a video on how to put on a bra and I'm still confused.  This bra is basically a pink straight jacket.  It hooks in the front, which you would think would make things easier.  The instructions, pictures and VIDEO all explain that you start hooking from the bottom up.  Well that's great except for the fact that the bra is designed so god damn tight that my boobs are over flowing and I can't even SEE THE FREAKIN BOTTOM HOOK!  I cannot see over the top of my breasts to locate the bottom hook!  I have tried every position in front of a mirror and finally realized the most helpful position would be to lay on my bed, looking into a mirror suspended from my ceiling...which I do not have.  That was Day 1 of trying on the bra.

Day 2, one week later, I did manage to hook the first hook.  That's as far as I got.  Stay tuned.

Tuesday, April 17, 2012

Day 17....Ugh

Horrible day today.

First, Dunkin Donuts has installed a huge magnet on the face of their building which attaches itself to my car as I drive by.  Magnetic force is a very hard physical property to over come.  Or so it seems.  I did manage to make it past Dunkin Donuts and the beautiful Boston Cremes that were waiting there to soothe my frustrated soul, only to succumb to two cookies, Tombstone frozen pizza and a diet coke at my parents house tonight.

Really, just an all around horrible day.  The cookies helped for about three seconds, the pizza was a huge disappointment, the diet coke was DELICIOUS and my stomach hurts.  I think the fact that diet coke is bad for you is just as metaphysically unfair as tanning being bad for you.  Everyone looks better with a tan and everyone feels better with a diet coke.  How could those two things be so bad?

Don't worry, I am in no way, remotely giving up.  That is not an option.  All in all, the eating plan and workout plan have been going fine.  The other night I actually made fresh asparagus for a bedtime snack. Seriously.  Unheard of on so many levels...1) fresh asparagus being in my refrigerator in a recognizable, non-mushy state, 2) me cooking, and 3)  eating it as a bedtime snack!!!

Today just felt overwhelming, frustrating, sad...sometimes it feels like I'm wearing a coat that doesn't fit quite right.  And whatever is wrong with the fit, is not noticeable on the outside, but always irritating to me.  Some days I am absolutely certain I will change and the coat will fit perfectly but other days I just want to tear it off and put on something baggy, comfy and sweet...metaphorically speaking.

And its not like I don't have healthy, effective coping mechanisms available to me.  I mentioned a link, in an earlier blog, to a really good, short meditation/breathing exercise:
It is so helpful and so easy and "works" every time I use it.  I feel stronger, calmer, just more able to face the day.  But sometimes I just want to do what I know best and that is eat.  So fucked up, right?

Well anyway, tomorrow is another day.  I work out with my fantastic trainer Greg.  Shooting for four and a half minutes on the vile stair master tomorrow.  I work with Patrick tomorrow so I will bring back words of wisdom and funny videos from him.

Let me end with two things that did make me happy.  First, my sweet, youngest niece Kelley, wrote a paper about me for school, on the subject of caring.  She said many really sweet things about me that made me cry, but what really got the waterworks going was she mentioned that every year for Christmas, I get her and her 3 siblings an animal from Heifer International, that is then gifted to a family in Africa.  You cannot imagine the teasing and laughter that goes on every Christmas when the kids open up their wrapped up pictures of cows, chicks, pigs and goats.  They think its hysterical and absolutely NEVER listen when I try to deliver my annual State of Poverty in Africa speech.  BUT, apparently they really do listen and appreciate it!  Or at least one of them does.

Second, Patrick handed in an English paper titled, I Love My Gay Nurse (me).  Hysterical.  He refused to let me publish it in the blog, but gay jokes aside, it was a great paper about how people who live outside the box sometimes have more to offer.  Best of all, he ended it with "I'd like to thank my sponsor, the Skittles candy company, for their product, Taste the Rainbow."

The kid is a riot.

Thursday, April 12, 2012

Day 12... Pics of Team Patrick

When I started this journey, Ed Reardon, owner of Results 22 in Glenview, asked me "What is your goal?  The race, losing weight or getting fit?"

I answered it was the race.  Completing the sprint triathlon.  It was about raising money for Patrick.  And if I lost weight and became fit along the way, that was great.

Not to be easily deterred, Ed followed up, "What if you were able to complete the race safely, but did not lose a pound along the way?  Would you be okay with that?"

Yes.  I would.  I'm not saying I wouldn't be disappointed, but if I got to the point where I was fit enough to safely finish the race, that is enough.  Size itself is not my issue.  Its freedom to move and live in the world as fully and freely as I want.  Again, having said that, losing a few lbs along the way would be great, but not a deal breaker.

5'2"   263lbs

For this reason, I don't want to spend a lot of energy talking about weight loss.  But it is a real issue in this journey.  My body is going to change in some way, so I'm posting the "before pictures".  Greg took these at his studio on Day 1 of my work out.  I think we can all be thankful I did not go for The Biggest Loser's bike shorts and sports bra look.

Meet our team:
This is a picture of Team Patrick: Greg Cabachon, Stephanie (Patrick's physical therapist), me and Patrick.  I got Patrick to smile by describing what I would look like crossing the finish line.

Laurel and Hardy run the Chicago Triathlon!
This is Stephanie, the beautiful and gifted physical therapist that works with Patrick along with Greg.  Stephanie is the first to join me in the triathlon! I'm not sure two more different body types exist. We are going to make a fabulous team on August 26!  Any bets on who will be the first to cross the finish line?

Join us!!!!  If I can do it, anybody can do it!!!

Day 12... Advice from Patrick

I realized that posting every day is a bit much.  Pearls of wit and wisdom do not flow from me daily. And anything other than that makes for very boring reading. So there may be times when I'm condensing to spare you incessant  whining.

Random exercise tip: Music REALLY helps.
On tuesday I was on my own to do a 30 minute walk.  I hate walking just for the sake of walking.  I love bike riding because you move fast.  Walking seems soooooo slow even when I'm trying to go fast. So I try to find a place that's interesting to walk.  I went to Lake Glenview and walked around their lakeshore path.  Its 1.5 miles for the loop.  Despite the fact its pretty and there is a lot of wild life, I still spend a significant amount of time looking over my should to see how far I've walked and looking at my watch to see how long I've walked.  I decided to put on my earbuds and listen to music to distract me.  It so worked!!!  However, it is impossible for me to hear music and not sing along or dance.  Luckily it was cold and windy on Tuesday so the people who were subjected to me walking along the lake path singing "I got the moves like Jagger. I've got the moves like Jagger.  I've got the mooooooooves like Jagger", were kept to a minimum.

On an earlier post I wondered what Patrick does when he is frustrated or angry.  He doesn't have the option of eating, or drinking, or slamming a door, or yelling.  So last night I asked him.

"Patrick, I eat when I get frustrated and angry.  What do you do?"


"Do you get angry and frustrated?"


"Come on! You never get angry this happenned to you or frustrated that your progress isn't faster?"


"What are you freakin Buddha?  How can you not feel angry, frustrated, resentful about this? How do you view this? Do you every ask yourself why this happenned to me?"

"No. This is just how it goes...that this happenned.  You can only change your future.  You can't change your past."

Clearly I (Mary Jo) could not believe this is how Patrick is handling his injury and current life.  He never complains and is always wanting to work harder, but I assumed that he had to struggle with frustration if not anything else.  I wondered if Pat was always able to take things in stride or if this is something has learned since his brain surgery.

"Patrick, before you had the brain injury, when you lost a water polo game, or a swim meet, were you just able to shake it off and think 'I'll just do better next time'?"

"No. I would get pissed off."

"What accounts for the difference now?  Why are you able to look at this differently?"

"I don't know why I look at it differently now. I just know that my job is to work as hard as I can now and not worry about what has happenned in the past.  I do get angry when people try to limit my progress or limit you do."

Let me just interject here, I (Mary Jo) do NOT try to limit Patrick.  We have a difference of opinion of what is safe.  Pat prefers to forget that I am a nurse and just keeps me around as his texting bitch.  A real challenge for everyone, is Patrick is 19 years old and is an independent adult.  Most 19 year olds, however, are not making truly life altering decisions about their health care.  Its a constant and really important balance for everyone in Patrick's life to respect his autonamy.

"So you realize Patrick, since Mother Theresa has clearly been reincarnated in your body, it is really hard for me to complain about anything in front of you without feeling really stupid and petty..."

Much laughter at the idea of him making me feel stupid and petty....

I'm going to paraphase the rest of the conversation.  Basically Pat told me that I bitch about everything (so not true) and that its really not that complicated...I can change my current diet and I will lose weight.  Let me just add it is essentially impossible to defend yourself when the person who is telling you this, is blinking it to you.  And I am enough of a bad witch to be annoyed by that.

It is impossible to have the last word with Patrick.