Mary Caruso

I made it to Portland! (um- pouring rain!)

just getting my jacket & gear ready for tomorrow morning!

Sami & Ally this one's for you! I love you guys!

Well, it’s been a long 24 hours!  I was a nervous wreck that is for sure.  Not really for the bike ride but for the whole anticipation of the trip.  I get nervous just knowing I am flying somewhere.  But then it really is more about fearing more things as we get older.  Sandi and I were just talking about that.  It seems that the more comfortable we get with our lives the more fear we seem to have.  I remember being in college and thinking nothing of driving four hours to see Kevin In Vermont!  So I think that the older we get the more we have to push ourselves.  Think of it as staying out of complacency!   Facing our fears is just away of keeping our minds sharp and our hearts open.  This ride should be nothing to me compared to some of the stuff we have been through!  One of the worst times so far in this journey has been getting us all through Alex’s spinal surgery.  I can remember like it was yesterday when the ax came crashing down on me!  We had to see the ortho surgeon as a yearly routine thing to monitor scoliosis for both the girls. 

Every year for the first six or so years I would be so sick before the appointment.  I hated to see that xray of their spines.  So this one year would be different, I was so much more relaxed and at ease!  It was a crazy appointment.  I ran Alex into xray and then helped weight and measure her then put her in a room.  I went out and got Sam in xray then helped measure her, but when I went to hold her up we fell.  Of course I tried to make light of it but Sam was so embarressed and upset.  She said,  ”mom please just leave me here a minute.”  What else could I do but respect her wishes.  I turned and walked into the exam room, the surgeon was standing in front of Alex’s xray; as I stood in front of him he said, “Her spine has moved to 64 degrees we need to talk about a fusion”.  I remember feeling just like I did the day they gave me the diagnosis of Friedreich’s Ataxia.  I was there but I wasn’t.  My mind somehow coped by leaving my body.  Odd as it seems, you are aware of what is going on but you don’t have any feeling, you take it in and it registers but you are numb.  I wanted to just open the door and run…………..but I didn’t.  I went out, picked Sammy up and we both went into that room together.  Like we always do, face it together…….Like how my parents taught me to handle things.  So for the next months we got ready, as ready as anyone can get for this.  The night before her surgery I laid on the bathroom floor most of the night and vomitted!  It’s true!  With the exception of the phone call to my doctor’s office to tell them that I must be having a heart attack, I was sweaty and sick and my chest was caving in on me.  He’s reply was short and cold, he said of course I was NOT having a heart attack, a stomach bug was hardly going to give me a heart attack!  Boy was he wrong…..I was having an attack alright…..a please GOD don’t do this to my beautiful daughter attack.  So I did what I did that night that would help me get through the surgery for Ally.  And I was able to pull myself together for her and for Sam.  She was so brave through it all.  She was a senior in high school and she really handled everything at home.  That was her way of coping.  But we did it we all got through it!  And I got through it like I’ll make it through this journey because of so many people in our lives. Believe me I say it way too often.  We have fun but we are really a very high maintenance family.  I am so grateful to our friends who stick by us…..and it is mostly the people who read this blog!  So you all know how hard it is sometimes to stick by us!

I know at times I get tired of myself MYSELF!  But it is so hard to get away from me !

So thanks for reading this personal entry…….I think it is important sometimes to know that it isn’t all just a bowl of candy!  But we all go through this stuff and we all find our own ways of getting through………Mine is with the strength of so many wonderful people in my life!  So for that I say thanks!

This is a great exercise for meeting people!

thinks this is a great movement! kindness!

I’ll got to Portland by about midnight (3am Connecticut time)  I have given some hearts out to some GREAT people.  They are for the most part interested in being nice to each other.  Both pilots on my first flight took two .  I am meeting some very handsome guys for some reason .

One day left till we pedal off!

cab driver! great tips on the bike route!

Until then- oh yeah!  snowing in Seattle right now!

In Peace and Love………

Always,

Meir

I have to interupt my daily training schedule for this important post!

Mary Stuart, Aaron Stanford, Jesse Scolaro, Sam & Ally at Cake Eaters Party

Most of the time it’s just good practice to have an open heart and be willing to reach out to help anyone who asks.  But sometimes you reach to help and it’s PAY DIRT!  A few years back I was asked if we would consider helping a director with a small movie that was being done in New York.  They needed help understanding what life was like living it with Friedreich’s Ataxia.  There would be a character in the movie with Friedreich’s ataxia and the director was very sensitive to portray the disease correctly.  I thought this was great!  First that someone would actually pick Friedreich’s (what a great way to get many messages across) and that a director would be that kind of a person to care about portraying it correctly!  It was probably a young person from NYU or somewhere like that.  I, of course asked the girls and they were also quick to say “no problem- we can help” so onward we went.

Jeremy Davidson and Ally at our annual fundraiser

I think pretty much everyone knows the rest.  The director ended up not being a young college student but non other than the very notable Mary Stuart Masterson!  The journey began and really hasn’t ended.  We went to NYC and interviewed with them.  Yes, the questions were sensitive and personal but the results were tremendous.  I say that because we had the chance to meet people who are so dedicated to film and telling stories that are meaningful and passionate!  One would think that it would all end there!  But they didn’t use us and dump us, we went to see some filming of the movie, met more great people and developed friendships that will stay with us forever.  Mary Stuart and her husband Jeremy Davidson as well as Aaron Stanford have been dedicated FARA supporters since that first day we all met.  Aaron is a great actor who plays opposite Kristen Stuart in the Cake Eaters.  Kristen does an unbelievable job with the part of a young girl with Friedreich’s Ataxia and Aaron represents hope to me.  His character is quriky but real. Aaron has also continued to support us so much in friendship we are truly grateful to know him!  The movie is filled with emotion and realism and puts a face on the human side of the disease.

Aaron and Sam at a Sandy Lane's fundraiser in California

It is premiering at the Avon Theater in Stamford, CT on Thursday March 19th -7:00pm…probably just about when I will be riding into Seattle.  Please think about going to see this movie!  It is great and you will see that Mary Stuart Masterson is not just a great actor but is able to direct with the same energy putting so much thought and emotion into her film.

www.thecakeeaters.com

So when you have one extremely talented person of course they end up marrying another extremely talented person!

Jeremy Davidson and Mary Stuart had to be destined for each other in this life.  They are two peas in a pod-kind, caring, filled with integrity and dignity!  Jeremy just finished directing his movie called Tickling Leo.  I don’t know of a premiere date yet but you have to go to the website to watch the trailer.  I know I can’t wait to see it!  You can view the info at

www.ticklingleothemovie.net.

Once again a movie filled with passion and emotion, a story worth telling!

We will never forget that day when we first met! We cherish the fact that we stay in touch to this day. We are grateful for the opportunity and it is a reminder to me everyday that opening your heart can actually change your life……almost always for the better !

Thanks for seeing these worthwhile movies and making a positive contribution to the arts!

The gang at the filming of the Cake Eaters

Well …..Back to my bike, two days left till I head to Portland :-0!

In Peace & Love,

Meir

So I was feeling like Lance Armstrong.  Pushing myself and challenging myself more and more.  I am getting so much encouragement from family and friends it is invigorating!  BUT and i mean a BIG but I was having lots of problems with my neck first, then it moved down to my shoulders and a few times it attacked my lower back.  I am now able to go about my daily life with an ice pack attached to my body without even skipping a beat. Cold but necessary-and a twice daily dose of ibuprofen.

rocky using my ice pack

On Thursday I decided to go out and do a challenging ride.  Laura kept telling me I should do it.  Not long, but hilly with the last stretch going up Great Hill!  I managed the small but difficult ride and did it in good time.  The last stretch was a definite challenge…….wavering in and out of the road, huffing and puffing (imagine Jack wasn’t even behind me with a bull horn and  whip) and barely making it up the last hill. BUT I did it and was proud, as a matter of fact Gary- from Pedal Power was quite surprised to hear that I had done that hill. He LOVES that hill (he must be part crazy)!  So I am thinking it was a positive move.

Um…….that is except as usual the next day I was out flat!  I could not move!  So the reality quickly set in that I am NOT Lance nor am I even close to Lance.  I have decided that I am Forest Gump!  But now- think of that!  Do these two men deserve and demand equal respect?  YES THEY DO!  As a matter of fact I think that Forest almost gets more respect because he was always so kind to everyone despite what his challenges were, it was just the way he approached everything.  He did it with a positive attitude and with dignity! So I am happy to say that I have given in to reality and today Pedal Power took away my Lance Armstrong handle bars and put on flat (but very nice) handle bars. Forest Gump would have embraced the change, so… I will too!   I have been quizzing experts, friends and my fellow rider, Paul from California.   Paul is respected by all for his wisdom and knowledge.  He gave me quite the lesson and a look at reality.  So thanks to everyone……Thanks to you  Paul for saying my problems were not age related!

So when I called Pedal Power and said………..I give up I have to buy a new bike!  The quickly said with great Integrity we can fix your bike.  You do not have to spend the money on yet another bike.  Wasn’t that nice?

Not just nice, but people with integrity….they could have sold me a new bike and grabbed the money.  There was desperation in my voice when I called but they took the high road! EVEN though I accidentally called Gary-Ron in my last post…..SORRY GARY!  There are honest and decent people in this world!  I am now able to comfortably ride that bike and even steer it without throwing myself into the middle of the road.  So I have recognized my limitations (remember-very very clumsy) and made adjustments so that I can ride safely in less than two weeks! My bike leaves on Thursday…..I will miss that bike!  Well, maybe not that much

CALLING ALL HEARTS!     

 

 

 

So……..falling in line with the blog I am trying to get more people to open their hearts and reach out to each other about the importance of kindness, respect, acceptance, dignity……..all the good stuff in life!

All the important stuff in life!  I am bringing paper hearts with words of inspiration with me to pass on to people I meet on the bike ride.  Please send me your heart!  It has to be paper as we have rigid instructions regarding packing and you know how the airlines are these days.  I would hate to pay thousands of dollars because I can’t fit the hearts in one duffel bag !  Although it would probably be worth it.  Please mail them to me!  at 1 North Street, North Branford, ct 06471  Sign them, I will put the blog address on them and hopefully keep some momentum going activating for acceptance and kindness! Just think this could be the beginning of a nicer more accepting world! AND You will all be part of it! Wouldn’t that be great?

So I will leave you with my heart saying:  

It appears on my T-shirt which I wear as often as I can

In Peace and Love

Always

Mary