Mary Caruso

Help find a treatment for Friedreich’s Ataxia!

 

WELL! the bike is officially gone!  It shipped out today, Pedal Power called me to tell me it went off into the sunset headed for GULP…….Portland, Oregon Residence Inn.  There it will be unpacked and put together by one of my more seasoned partner riders, Bart Rupel.  It’s kind of lonely around here without the bike.  I am so used to it taking up the whole den area.  You know, smiling at me with those shiny handlebars.

hour 3 & still pedaling

hour 3 & still pedaling

It has become an appendage of sorts….you know really attached to me at the seat!  Now I have to go borrow Jackie’s bike just to keep up with the pedaling.  I would hate to have worked so hard only to forget completely in a week how to sit on that thing and move my legs around.  I think I can do this!  I know it won’t be easy but tonight I watched Sam and Aly  in  PT sessions with Nicki and Jared.  I can’t help but admire the strength and courage it takes to work so hard to practice just sitting up!  It is one of those kind of  private things that most people don’t realize when they see the girls.  Those many hours that people never see. She is having a hard time not tipping over……this is typical with Friedreich’s as you lose muscle control.
 So for quite a long time the two of them faced each other and Nicki coached Sam on holding in those ab muscles and sitting up straight.  Then Alex worked with Jared and practiced pulling those bands to keep her muscles strong and stop the progression that weakens them more each day.  Nothing that am going to face on Ride Ataxia 3  can possibly compare to that.
Working so hard to try to keep this disease from wasting
away what muscles you have left.  What did I say? I  think I can do this?  No I know I can do this!                         
 I can do this for the
respect and dignity of Sam and Aly and all the other people facing their lives dealing with Friedreih’s Ataxia! I know it will probably be a humbling experience (I wonder how many other riders I will hit) or how well I will do on this ride or even if I can make the whole thing….. but that is something that will make me a better person a more appreciative person… YES……a better person. That is part of the reason I originally decided to do this!                                       
    

still smiling after all that work!

still smiling after all that work!

 

when in the heck is she leaving?

when in the heck is she leaving?

 

 

I am getting some great hearts in and some wonderful feed back on class rooms of kids doing hearts.  Rob Miceli was the first teacher to answer my call for hearts.  He is an amazing man, a true hero.  Alex volunteered in his room last year and had such a wonderful experience.  It is so comforting to know that we have this open and creative man who teaches so much more than academics to his classes, he teaches acceptance and kindness-mostly by example!  So please try to send me a heart.  It can be any size (remember if I gave you one specific size they wouldn’t be diverse they would all be the same-now that isn’t what we are looking for).  It can say anything that is inspirational to you! You can sign your first name as well as your town and state.

I will write on each one that someone who cares took the time to write it.  There will be a link to this blog so we can hopefully follow some of them and begin dialog on kindness in the world.  I am working on a badge that will say: “Ask me for a heart”

I will either connect all of us with hundreds (maybe thousands?!) of open hearted people or end up in jail.  Either way it will be interesting….and if it is jail I can bring the hearts to jail!

So thanks for all the support, it really means so much!  This will be a nerving week getting ready!

Did I mention I am soooooo afraid to fly? :-)  

Until the ride…………

In Peace and Love

Always

Mary

  1. You are going to be so fantastic! Especially with those daughters of yours to inspire you. You’re right–they are heroes who face every day with such courage. I can’t wait to hear about this. I laughed out loud at the thought of you in jail in Portland for giving out hearts.

  2. Holly
    8:26 am on March 8th, 2009

    Mary,

    I just spent the last hour reading and re-reading your posts. So much to think about. So much inspiration. When the kids get home tonight, we are making some hearts — pronto! I will be thinking about you and the other 66 riders every step of the way.

    Love,
    Holly

  3. Laura
    4:44 pm on March 8th, 2009

    Matthew and I have our hearts almost ready? You know me, perfectionist, OCD….whatever you want to call it I have it! Matt wanted me to write; “I love you and never mind I LOVE YOU MORE” along with a heart he drew and colored in. It is on a circular piece of paper and I have not figured out how to laminate it yet. Anyway, hope your hair and nails to not grow so much on the plane that you will not be able to ride the bike!!! You are going to do great. We will all be home thinking of you and sending you our strength, love, courage for when you go over the big bridge and high hopes! Love you, Peace Out, me

  4. Suzy
    5:35 am on March 9th, 2009

    Ok Mar, so I know its scary (biking and flying) but I also know that such small obstacles could never keep you from making every effort to accomplish the task at hand! So, I, too, am making a few hearts to get to you before you leave (hopefully by wednesday?) Besides, I want to see you and I need a couple more shirts (My Mom in Florida is so excited and inspired by you!)

    My thoughts and prayers will be with you every step of the way. YES YOU CAN! (do it!)

    Love to you, travel safe and ride with a vengence!

    Suzy

  5. Cindy
    5:53 am on March 9th, 2009

    Mary, I just spent a wonderful weekend at the ACTS retreat and I prayed for you and the girls. You live your life by giving joy to others and doing God’s work. Your example is one that strengthens others each and every day. Thank you! I will be praying for you and I know our Lord will give you the abilities, the strength and the sense of humor to get through this.
    Love you Mary, Alex and Sam!!!
    P.S. Tonight is heart night I hope they get to you in time.

  6. Mark
    6:45 am on March 9th, 2009

    Go get em, Mary. So many people will be riding with you. You won’t be able to see them, but we’ll be there.

  7. Tom Hopkins
    4:57 pm on March 9th, 2009

    Hi Mary -

    We will be rooting for you from Quinebaug!

    Tom and Caroline Hopkins

  8. Tracy
    6:48 pm on March 10th, 2009

    Mary,

    Wow, talk about strength and courage… We will be rooting for you every pedal of the way. You are going to do great. Your girls have the gumption they have, because they got it from you Meir. You are there to love and support them and they are there to love and support you.
    We feel so blessed to have you in our lives.

    Bike on….

    With Love, Tracy, Jim & Nicholas

  9. Mary,

    What a terrific article in today’s New Haven Register on your heroic efforts!

    I hope Sam and Alex are happy at SCSU; I’m so impressed with everything going on there!

    Just love your blog and good luck with everything. What a great way to get the word out! (I just visited your sponsor page : ) )

    Hugs to the girls,
    Ruth Rose

  10. Sam
    7:29 pm on March 15th, 2009

    You can do it mom! I’ll call you tomorrow.

  11. Karen
    2:37 pm on March 16th, 2009

    Good luck Mary! We all love you and are thinking of you! Just pedal your little heart out and you’ll make everyone you meet smile! Karen,Craig, Melanie, Grace & Carly xxooxxoo

  12. Carolyn
    4:17 pm on March 16th, 2009

    You are so amazing. We are cheerleading from the Catskills! I love your t-shirt. Looking forward to following your blog… Your girls are so lucky to have you as a mom.

 

Well, It is official………22 days until the big bike ride!  I realize that I have not written too much about how my actual training is going.  I have written about everything but…….So I will fess up now to how unprepared I really am.  However there is so much other stuff in life that is important yet relates to this whole journey…….don’t forget we are all trying to open our hearts and accept ALL people.  We are moving to co-exist as a nation of understanding and kind individuals!

my inspiration

my inspiration

my joy with my sorrow!

BUT there I go again away from the ride……so for all of you incredible people who have invested in me for this ride I can tell you that I have learned a TON!  I now know how to hold my wrists on the bike AND my arms.  How to position my head (not a normal position I promise) and even how to actually pedal correctly.  I know this because I was doing all of it WRONG!!!!  I had a great training session with Ron at Pedal Power in Middletown.  They are my new best friends.  It is a great little shop………now when I say little I don’t mean small.  The area is large, the selection of bikes huge, the knowledge of the staff unsurpassed! When I say small I mean it is intimate, friendly and embracing.  When I first walked in Paul met me within seconds……..huge smile and a very warm welcome.  He could probably see the terror in my eyes because he was very gentle in his approach.  It brought me home to how I would try to greet my customers when I had my shop.  He had the very hard task of fitting me to my bike helmet….NOT an easy task.  I think that my head is way too big for my body.  And those things are not the least bit stylish.  Someone has to do something about those things……my riding helmet back when I was a kid looked better.  And maybe my friends Holly and Kyle who ride can get by wearing them because they are unbelievably good looking but what about me?  UGGGGGG…it is NOT good!  So anyway Paul did fit me after a long time.  Each time we got closer to the right fit I would break out in a cold sweat!  remember I am VERY claustrophobic!  But you gotta do it!  So I sucked it up for safety sake! And we did it…..the final fit was perfect!  It took a few minutes for the sweat to stop and the room to stop spinning and my ability to breathe return!  I have gotten used to the helmet and now it’s only a few seconds after I put it on to get back my courage.  NOW! Combine that with clipping your feet into the pedals, putting on those important gloves, balancing on the stupid bike and EVEN…..GULP! riding down route 80 (from the library to my house)……….but I DID IT!!!!!!  So what does everyone think?  Too small of a step?  

The general concencious is…………I am in big trouble!  Last night there was a big surprise at my house when I got home.  A group of dear friends all traveled to be together to have a great dinner and celebrate friendship, love and kindness.  It was the perfect night!  My girls planned it……Ally & Sam & Laura & Janie pulled it off without a hitch and we had fun!  The only bad part is that EVERY other word was about the bike ride!  And it wasn’t all good!  There were some knowlegable riders present, my friend Mike is a big peddler from way back and he was pretty tough on me!  There is SO SO much to know and so much work involved.  Everyone agreed……..I am in big trouble!  

karen with the two bike experts=john & mike

karen with the two bike experts-john & mike

PLEASE REMEMBER!  I never said I was well trained or experienced.  I am doing this for enlightenment and to become a better person.  I am doing this for those who can’t ride or even walk, I am doing this for those who have a hard time existing in life, I am doing this for the betterment mankind!  I want ALL people to know that you have to work hard in life, strive to exist and LOVE what you have not WANT what you don’t have!  So one way or another I will finish the ride.  Mike thinks it’s going to be sometime in June……John thinks I will do so well that I’ll keep going to Canada :-) !  Either way the important lesson is……………I love both these guys for the different people that they are and the joy they bring into my life.  (John reads the blog…..Mike does not!) I embrace my life for the beautiful path is takes-my great kids, my wonderful friends and family, my incredible sisters, the forever memory of my mom and dad (they ride with me each time I get on the bike) ……………… and I am grateful for each and every day!

Hope I talked enough about the ride! I am working on my core strength and as of today I can ride 10 miles…..Mike wants me to do 15 THIS week!  UH OH!

Until then……..

In Love and Peace

Always,

Meir   

it's the people in your life that make the journey worth living!

it's the people in your life that make the journey worth living. Missing are Darren & Jackie!

  1. janie
    1:37 pm on February 22nd, 2009

    hey mary

    it was so much fun last night and I think your friends generated so much energy for the ride— I wish you the best and give you so much credit for doing this— it will be great and you will get so much back from the other participants— so, just aim and go—
    we will all be with you in spirit and love
    janie

  2. John D
    5:42 pm on February 22nd, 2009

    Peace and Happy Birthday!

  3. Laura
    6:47 pm on February 22nd, 2009

    We are all blessed to have you and the girls in our lives! You are not only inspirational but you don’t give up. NEVER NEVER NEVER give up.
    If you only bike 1 mile or 400 miles you did better than a lot of people in the world. However; you touched and inspired thousands maybe even millions someday. God Bless all of you riding to find a cure; and you will!

    Peace Meir and Happy Birthday !!! Love me

    PS: if you really want a challenge bike the 5 mile loop with Jack

  4. Cindy
    9:05 am on February 23rd, 2009

    Happy Birthday…

    I am with you and praying for your successful ride.

  5. Matt and Babi
    8:38 am on February 24th, 2009

    Mary,

    So good to talk with you today, babi and I will be thinking during your big ride…kepp up the hard work, we are so proud of you. Give the girls a kiss for me. Love and prayers.

  6. Cassie Richard
    7:12 am on February 25th, 2009

    Mary,
    I am so proud of you and honored that you are going on the ride! I live in NY my son Albert is 12 with Fa. I met your family at the Phili conference. We just saw Dave Lynch who I learned is also going on the ride. The joke at CHOPS is that a car will have to follow Dave for fear of a heart attack!!! You are all doing such a great thing. Take your time be safe and know we are so proud of you.
    Cassie

  7. Paul K
    10:03 am on February 25th, 2009

    Great (wide-ranging!) blog, Mary! And you actually talked about the ride in this one! lol Last year there was a great sociable group at the back of the pack that talked their way through the 50 miles; you’ll fit! And Linda Johnson said her Ipod saw her through; she moved into the music and let the miles roll.

    See you soon!

    Paul K

  8. Mike
    1:44 pm on February 28th, 2009

    Go M.A.C.Go!!! You can do 200 miles.Just sleep on your stomach. Ouch!

  9. Pam
    5:16 pm on March 15th, 2009

    Go Mary Go!!!!!! I am thinking of you and wanting the very best for all of you! I am anxious to hear how wonderful you feel at the end of the ride! Go for it!

 

 

some choices in life come so naturally!

some choices in life come so naturally!

 

YOU ARE ALWAYS ONLY ONE CHOICE AWAY FROM CHANGING YOUR LIFE.

 

That is a quote I recently read and thought about it a lot!  I think I have always been a person of principal but I have always been a kind of coward when it comes to confrontation.  So that has kept me out of a lot of trouble over the years.  But keeping with the quote and my passion for making the world a kinder place I realize that sometimes you just have to speak up.  This brings me to two episodes that I feel compelled to talk about; one I spoke up and one I will not.  Well, I won’t speak up directly but I will speak up about both now in hopes that a few people will realize that we can do little things as human beings to make a difference.

The first episode is really about Sam.  Sam has an internship, which she loves!  She has been working at her internship now since the start of her fall semester.  It isn’t easy for her to get there but she does it.  I think she has missed one day since she started.  I am proud because despite having to always find rides, being dropped in the parking lot, coordinating people to get her in and out of the car and getting into a building that isn’t accessible friendly she perseveres.  Well, the other night she was working and they ended up closing early.  Everyone packed up, walked outside, locked the building, got into their cars and left.  Well, that is everyone but Sam……..now she told me not to say anything and I will respect that but let’s think about this.  AND before anyone says anything,my disappointment has nothing to do with the wheelchair.  If I was at a meeting at night and I walked out with a friend who was waiting for a ride I would not leave them there alone.  It’s about being a kind human being, a thoughtful person.  Besides, imagine if someone waited with her?  What a chance to get to know someone a little bit, maybe a joke or two or just a small bonding moment.  To me there was a choice for any of those people to change their life just a little bit…………to make a new friend, do something nice.  Instead they all went home their separate ways and that is that, to me an unkind, uncaring sort of existence.

This next escapade will probably get me a lot of flack but i am a person who preaches about stepping up to the plate to making the world a kinder place so if the shoe fits………

I was coming from motor vehicle to Universal Drive yesterday.  Most of us all know that intersection…..the stop line is way before the corner and the opposite oncoming traffic has a green light first.  I am always cautious when I come to these intersections.  I was sitting at the light listening to some great music when I heard this blast of a horn.  I jumped-practically out of the car then heard it again.  I looked around only to see this very angry face in my rear view mirror.  GOOD GOD!  Why do people have to be so combative when it comes to right turn on red.  Who says you HAVE to take that right turn?  Better yet, who the heck passed that law anyway?  It has just contributed to the problem of people rushing around way too much.  But then I thought maybe somehow he had severed his leg and had to get to the hospital quickly? Or he could be in a rush to get to someone having a heart attack!  But by the time I relaxed and realized what was going on the light turned green and I of course went right away.  Well, he passed me (because you know- severed leg) and I was pretty disappointed to see that he was in a rush to get to – yes BJ’s gas station.  So I made the choice to turn in and ask him why he would be so mean!  Let me say, when you come across such an arrogant and combative person don’t expect too much!  BUT I tried!  He was even worse to talk to!  Janie tells me it was a waste of good energy, which she is right, could be true.  However, I had really had it this time.  This was about the third time that I was blasted for not taking a right turn on red and I am getting sick and tired of pulling up to a red light to be honest.  I think I just want to start a campaign……..I want to make tickets for really mean people.  AND I want a mean person jail!  So I can give out meanie tickets and mean people would have to go to mean jail and do really nice things before they can get out! A total meanie rehab would have to take place!  It is the only way!  Jane is right, I may not have had an impact on him and yes he may continue to try to boss people around if they don’t immediately take that right turn on red.  BUT if each of us would stop and tell him he can’t be mean anymore would he stop then?  It’s nice against mean!  So Mr. Meanie in the black Mercedes CT6952- we have had it with your arrogance!  You have been tagged as mean, go directly to jail do not pass go or even pass BJ’s gas station!

Please take a breath at the red lights, don’t rush right out there and take that right! AND by all means PLEASE don’t beep at people who may feel it’s not the time to take that right turn!  It may be the only two minutes in the day you get to look around and see something beautiful! That is unless you have severed your leg…..then it’s ok to beep!

Thanks for listening……..

 In Love and Peace!

Always

Mary

  1. Mia
    5:02 pm on January 29th, 2009

    Mary!!! Loooove the blog.. its a very fun read and so uplifiting!! Two thumbs way way up!!! xoxox Mia ps- i asked if ally could come do some hours at school with our school social worker. ill let u know asap.

 


  I guess before I can really express my true convictions I have to write just a bit about how I became so resilient.  Especially this time of year, I believe we all look back upon our childhood with so many emotions.  I truly had the most amazing parents anyone can imagine.  

My dad was a business man who had a combined personality of intelligence, wit and compassion.  Even after his passing in 2001 I still have people coming up to me to tell me these wonderful stories about how he helped someone out when they were having difficult times.  He owned an oil company in my hometown of Rocky Hill.  He really was the pillar of the community involved in so many civic organizations.  He was so kind and generous.  We butted heads most of our lives but had a deep connection because we were so much alike.  I still remember the day he was so mad at me I thought his head was going to blow off.  But he never raised a hand to any of us instead he banged on the side of the house so hard I saw the shingles start to fall away!  AHHHH great memories.  My most precious memory is that of taking a trip alone with him in 1994.  I had never done such a thing and we had a blast.  We went to Florida together and I had the wonderful opportunity for the first time to see how much we really were alike.  We talked to everyone and made friends everywhere! Then when we found ourselves snowed in at Newark Airport we made people laugh-and I mean people who were pretty aggravated at the situation.  We were able to turn the mood around and laugh and joke with people in the airport.  I will always cherish that trip as one of the most valuable lessons in my life!

My mom on the other hand was a bit more quiet and reserved.  She was the apitamy of what a mom should be.  Beautiful in spirit and so humble.  Almost every day when I walked in from school her baking bowls and wooden spoons would be out and ready to bake some great new recipe.  She was the wisest woman and had the most insightful advice for many.  We lost her this past June and this season is turning out to be the most challenging for me so far in my life.  My sisters Marcia and Micki and I have still not moved her bathrobe from the hook in the bathroom, somehow it just doesn’t seem final until that is done. Mom had a heart of gold and was the most non judgemental person in the world-truly and genuinely!  She attracted people to her kitchen table her whole life-she was the best cook and was always such a delightful person to sit and talk to.  When I was a child I remember on May day she said to me, “let’s go pick all the may flowers in the back and we will bundle them and surprise people by leaving them at their front door”.  It was such an exciting adventure, and such a simple pleasure.  We had a ball running to our neighbors doors and leaving the anonymos beautifully wrapped bundles of flowers.  Thinking back it was the start of my desire to do acts of kindness and my mom introduced it to me at such a young age.

Together they worked as a team raising my sisters and me in the most wonderful home I could imagine. Marcia, Micki and I recently took time away from the busy season to sit and enjoy lunch together.  It was so wonderful!  We talked about how much our parents cherished family and vowed to see each other at least every other month.  I ask you this week to think about your roots, your parents!  The people who made you who you are today.  Let go of any of the bad stuff (cause there is always bad stuff with the good stuff) and really think about the good stuff. Whether they are here in body or in spirit hold on to that one great memory and place it in your heart!  If you have children try to talk to them about the good stuff that was brought to you and what you bring to them.  

Open your hearts today and enjoy.  May you find love and peace in this day. Oh yes and do something really kind, either to someone you know or maybe someone you come upon- YES even a stranger!  And even if it is just a smile and a hello.  Then comment on it- on how you felt to put yourself out there. Try it!

With Love and Peace & a Merry Christmas to all!

A Wonderful Christmas Day 08!

A Wonderful Christmas Day 08!

 

 

 

 

 

 

 

Always

 Mary

  1. Joe G
    6:30 am on December 24th, 2008

    Merry Christmas

    Mary, your blog was wonderful today. If more people could do as you ask and extend some kindness to the less fortunate how great a world we would live in. Good luck on your ride, you will be fine. I ride in the Pan Mass Challenge each year know for a friends little girl who has battled branin cancer for 6 of the 7 years she has been alive, and during the ride when its get a little tougher I tell myself I cant quit because Emma cant quit, I will quit when the time comes for her not to have chemo therapy, after she stops having seizures, when she can ride for herself only then will I stop.

    Thank you for what you are doing and have a very Merry Christmas and let the girls know their friend in NH is thinking of them and praying for them everyday.

    Joe

  2. Rachie
    12:41 pm on February 2nd, 2009

    I LOVE this entry :-) . I get choked up reading it…:-)The pictures are so wonderful. Its amazing how one photo brings back years of memories :-) I have the updated family christmas pic on my computer at home if you want it…I just need your email. The one mom gave me didnt seem right?!
    Lots of love
    Rachie
    xoxo