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.
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!!!

2 comments:

  1. Dear MJ,

    I wasn't aware of your ability to float in water while upright - very impressive! Please tell Patrick that your friends know that you have many, many special talents! (And I still want to read his essay about you.)

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  2. Hi Mary Jo

    It's you cousin Pammy. I spent the night reading all your blogs regarding this amazing journey you are taking. Months ago, my mom told me about what you were doing and how she enjoyed reading your blogs. I'm so happy she forwarded on your site so I was able to follow you too. I just want to let you know that I am so proud of what you are doing. You made me laugh and cry tonight and I thank you for sharing this story with me. I wish you the best of luck as you continue to train the next month and especially on August 26. I will be thinking about you! YOU CAN DO IT! Keep you head up high, think good, positive things and FIGHT for it! Your friend Patrick is a fighter and so are you. You are one amazing girl Mary Jo!

    Love you!

    Pammy

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