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!!!