Mary Caruso

Help find a treatment for Friedreich’s Ataxia!

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!

 
                  

“Life is not what society trains us to think it is.  It is so much more.  The diagnosis of our children with FA is not something we want, but something that steers us into the direction of finding in life what others may never understand. “ 

As quoted by my Connecticut friends- Tom & Caroline Hopkins – parents of a young daughter with Friedreich’s

 

So many people will never understand the true meaning of these words.  You don’t necessarily have to have your life challenged to know what the words mean.  There are some who naturally get the “true meaning of life”  but there are others who will never get it.  I try to use this example when I push the girls to enjoy life and be grateful for what we do have.  Because of this understanding we live with extreme compassion (sometimes way too much for those around us) and with that compassion comes the will to fight, to survive; if you will.  

 

 

 

I had the pleasure of working in the FARA office last week with Jen and Felicia and the great new person, Lynn!  It was encouraging to see how big FARA really has grown while still keeping the big heart that we have always given it. I feel that this is the one thing that has kept us above the rest!  This is a group of people with diverse backgrounds (heavy hitters as they say) but who are all extremely kind, compassionate, accepting and with an undying desire to work with everyone! How proud I am to be part of this incredible group of people!  I’m actually not sure how I really got here!
                 

Boy! Those girls can pile on the work!

Boy! Those girls can pile on the work!

 

jen-always busy working for that cure!

jen-always busy working for that cure!

The important part of the growth besides the obvious push for a treatment is the awareness that has been brought about.  I can not tell you how lonely it was in 1995 when there was nothing……the isolation was almost unbearable, the unknown scary. We are not quite where we should be as a society.  But with our open hearts I am optimistic that one day we will as a society treat all people with dignity and respect. How easy it is to judge someone on their looks rather than take the time to listen, be patient and really see what is inside someone to see their true beauty! AND… the more we try to overcome the prejudice the better we become as people.
felica and laura hard at work!
felica and lynn hard at work!
Besides working in the office I spent some great down time with both Felicia and with Jen and Alan and their beautiful sons, Garrett and Luke. It was such a pleasure to be part of these kind and loving families.  It gives me such insight as to why the mechanics of FARA work so well.  Obviously people who are so content and happy on the inside just can’t help but bring that joy outward. Their homes are true testament to the generosity they exude.  I was made to feel comfortable and felt so much at home with both families.  I was even able to feel comfortable as I joked with Alan and his obvious compulsive behavior with frosting on a toaster strudel.     

 

Who does this? only Allan!

Who does this? only Alan!

 

 But really, a wonderful experience and I feel like I did something worthwhile with my time by helping out with the clerical stuff.  I am also proud to know that these people have touched our lives and continue to do so everyday. 

famiy roots begin when two people fall in love.

famiy roots begin when two people fall in love.

to be this happy in the morning says something

to be this happy in the morning says something

 

I also had the exciting adventure of a life time as Felicia scouted out the bike shop that Holly had set up in advance to help with the purchase of “THE BIKE”!  It is presently locked to my ankle-a little hard to get around the house like this but I will get used to it-!  We got lost at every turn, backed into busy streets and laughed so hard we cried.  We got to the bike shop with two minutes to spear- but low and behold! We got the bike!  It sat at Jens for the week and then once again my dear friend Felicia delivered it to me in Connecticut.  Now I just wish she could also ride it from Portland to Seattle in March.  hmmmmm i wonder if I could somehow arrange that? :-)

Be sure to take the time to get to know your friends a little better today. You will be the better person for it!

And maybe develop a bit more passion for life by stepping into someone else’s shoes………

A big day and a fun adventure :-)!

A big day and a fun adventure :-) !

 

 

In Love and Peace

Mary


 

 
 

 

 

  1. Laura
    5:56 pm on February 11th, 2009

    Love and Peace to you too! Love me

  2. Mandy
    6:18 pm on February 11th, 2009

    Actually aunt Mary, the frosting on my toaster strudels looks waaaay better than Alans… :)

  3. Tom Hopkins
    6:48 pm on February 11th, 2009

    Hey Mary -

    Thanks for the link. Hi to Sam and Alex! We’re just starting out in our FA journey, but “kindness in all things” has taken on a whole new meaning for us, though we’ve a long way to go. Fortunately for us we’ve got our FARA family to help us along the way. Our loneliness was deep and dark as well but short lived, as we found FARA soon after Grace’s diagnosis.

    Tom Hopkins

  4. Suzy
    5:32 am on February 12th, 2009

    Can’t wait to see your bike Mary…and how you move around the house with it! LOL Love your blog and look forward to reading each entry!

    Love ya, Suzy

  5. supersam
    6:26 pm on February 12th, 2009

    Hay nice blog mom

  6. Pat Finocchiaro
    7:34 pm on February 20th, 2009

    Dear Mary
    So nice meeting you at the Spa yesterday,, I am back home in Southampton and have just read your entire Blog,,,,,Well Mission accomplished,,,,You have inspired, touched, and enlightened me… I will continue to keep you and your family and friends in my heart , on my mind , and in my daily prayers,,,,,You are a role model,,,,,have a super duper day,,, With much respect, Pat

  7. PS I need to know how to donate to your bike trip?? thanks Pat

  8. Allison
    6:47 pm on March 3rd, 2009

    So Mike tells me 1400+ people view your blog — this is excellent!!! I love reading your posts :)