Sunday, July 29, 2012

DAY 103 0NE MONTH FROM TODAY!!! AND A GREAT PATRICK STORY!

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.
video
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."

LOVE THIS KID!

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, maryjoandpatrick.blogspot.com , 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.

12 MILES!!!! OH MY GOD, I AM GOING TO DO THIS!!!

YEAH BABY!!!

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 important...you 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

Day 92 PATRICK WALKING....

                      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 world...as 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.





YEAH BABY!!!