Mary Caruso

My friends Jack and Laura are true blue friends.  They support me in everything I do; whether or not they agree with what crazy thing I am doing at the time.  So back in September when I told them I was doing this bike ride, they never hesitated!  Jack took their hybrid bike and brought it right into Zanes.  He had it tuned up, put brand new tires on it and a new seat too!  Jack said that would turn out to be my most important part of the bike-had to have a good seat.  He so proudly brought it to me when it was done.  We spent time together-Jack showing me how to get on and off of it properly-yes it is true I did not know how to do that!  He showed me how to use the gears and just how to stay on the thing without falling off.  Mostly he yelled at me just because that is what he does !  But that is part of who he is and I love him for who he is! Jack and Laura are the best at listening to me cry and complain and getting me through life’s bumps in the road. Jack will yell at me and I will stop and think about what great advice he gives me and I am back on track.  So my bike wasn’t just a bike to train on, it was a sentimental memory- a personal piece of emotional support from two people who genuinely love me and accept me for all of my quirkiness.  

So tonight I got all dressed for a great but cold and challenging ride-I put on my great new bike shoes that Norm helped me pick out, the under armour Jackie bought me for Christmas and Alex’s warm scarf that she insisted I put on. I made my way to the garage….. opened the door and wait…….where the heck did I put my bike?  It was here just a day ago!  Then I thought; Ben…….he has been working so diligently on the house….he didn’t like where I put it so he moved it somewhere, of course!  I dug to the back of the garage but nope!  OR someone picked it up to put some kind of neat accessory on it as a surprise! I called everyone, no one did that either!  So the reality has set in; I am sad to say no one moved the bike, well at least no one that we will ever know about because someone actually came to my house, went into my garage and stole the bike!

 But then this ride and this blog are about over coming obstacles so I know I will get past this and be able to move ahead. So being robbed kind of fits into the whole theme of picking up where you left off and moving on in a positive way.  It’s just another challenge associated with the ride, besides no one said it was going to be easy!  Really this isn’t the worst thing that I have been through.  It is however one of the most personally offensive acts I have been through.  I can not imagine stealing something from anyone.  I have a hard time stopping when I see something really great on the side of the road.  I am always compelled to knock on the door first……JUST in case the people really didn’t mean to put it on the curb.  The bike was a symbol that Jack and Laura knew I could and would do this and now it’s gone.  The bike was a reminder of their immense generosity.  I feel worse for Jack and Laura, it was not a cheap bike and they trusted me with it, I really should have been more careful.  But I will replace the bike and they know I will.  And the sentimental feelings can’t be taken away-no one can rob me of that!  Because those are the important parts of life-the wonderful memories!  I will always remember Jack yelling NO! You don’t just jump off the thing at that speed, you slowly lower one foot as you stop.  NOW DO IT AGAIN!

So if anyone happens to see a really short person (it was a pretty small bike to fit me right) on a great looking Trek hybrid bike or a really big person trying to ride a really small bike- would you please ask them if it is Jacks bike that was in my garage? More importantly you better tell them Jack had better NOT find out who did this!   Explain that this is a challenge for me and I really need that bike!!  Who would have thought? I keep saying to myself, “say it isn’t so”…..but unfortunately it is! 

Well, as my father used to say…….. keep your chin up, there are better days ahead.

In peace and a world without theft

Always

Mary

  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!

Always

 Mary

Susan, Tami, Sam, Alex

Me & The Emmy 

It’s funny how things happen, my friend Susan is a very detail oriented person as well as an incredibly talented and driven woman.  She read my blog and sent me about 10 pages of what I missed telling you in the first post.  Actually just a half of a page but I usually exaggerate, as Alex will tell you.

 We met when she produced a television segment that we were privileged to be part of for Keeping Kids Healthy.  If you have not seen the show you can do so at; keeping kids healthy (link on the right side of my page in blog roll box)  and click on the award winning show on Friedreich’s Ataxia.  Susan and Tami produced the show and did a beautiful job AND they received a New York Emmy for it.  AND as life is so funny,  on top of it all, when she said I have to go back I thought this is amazing!  It reminded me of this weekend when we had a chance to see our dear friend in his new play called BACK BACK BACK. IF you get a chance see the play at the Manhattan Theater Club in New York City.  It is about the steroid scandal in baseball-even if you don’t know a lot about baseball-like me- you will still enjoy it.  The acting is great, the plot interesting and the bits of humor perfect!  Jeremy  is an amazing actor and he and his wife Mary Stuart Masterson have been great friends and solid supporters of FARA.    

So Susan wants me to back up a bit and talk more clearly about what it is I am doing and give a little background so…….On March 16th I am leaving from Portland Oregon and riding a bike to Seattle Washington.  We will do 50 miles a day (I am up to 7 straight miles right now).    First let me say that there is a sponsor me page on the right side of the page in blog roll box… reading it is worth it just to see the photo !  Ride Ataxia is in it’s third year, started by an incredible young man Kyle Bryant.  Kyle has Friedreich’s Ataxia, he was diagnosed later in life and decided while he was still walking he would have to do something to make  a difference and that he has.  His first year he raised $40,000 and covered 2,500 miles, his second ride raised $142,000 and covered 650 miles.   This started a joint effort between The Friedreich’s Ataxia Research Alliance and the National Ataxia Foundation to match the funds Ride Ataxia raised to fund new research.  The Kyle Bryant Translational Research Award was born!   Kyle is driven and kind and oh so funny – almost as funny as Sam!  You can read more about Kyle at ride ataxia (click on the link in blog roll).  The Friedreich’s Ataxia Research Alliance is a wonderful group of people who I am lucky to be a part of since the very beginning! They have done more for awareness and research dollars for the disease of Friedreich’s Ataxia and other neurodegenerative diseases than just about any other organization.

Having said this much (hope it was enough Susan) I do want to give some insight into some of the stuff that is not so obvious (or maybe it is).  I am extremely uncoordinated, very claustrophobic and five months ago weighed in at 145. I never even realized I was gaining that much weight-why didn’t someone tell me!  This was a year of fast and incredible transition for me.  Alex had a serious heart complication, my mom passed away on June 30, although THIS may seem trivial to some-my cat passed away in July,  both girls went off to college in September and a dear friendship ended in October………I stopped saying it could always be worse!  So for me, this ride represents even more about over coming obstacles and moving forward in life with humor, kindness and perseverance.

Although my daughters both live their lives with Friedreich’s Ataxia, they are fighters. There are definitely obstacles for them.   Most do not understand that a big part of living life with a progressive disease is that you don’t have the same liberties and choices that you and I have.  You can’t just get up and go where ever you want when ever you want, you have to rely on others to do a lot for you (this is one of the hardest adjustments they have had to make), and there are many times when they can not access buildings like able bodied people do.  Most of us can not step out of our own shoes to realize how difficult such simple things are because we take so much of it for granted.  Sitting in a wheelchair puts you in a totally different perspective of life! And I mean that both literally and figuratively.  So this challenge for me is about learning what it is like to not have choices.  I am terrible on a bike, remember…..clumsy and claustrophobic.  When you are claustrophobic you have an issue with loss of control-that bike has a mind of it’s own.  The thought of riding in traffic is a genuine fear for me.  And the endurance- YIKES!  But I am committed and I WILL do this…….

  I feel an obligation to overcome some of these transitions of life I have gone through this year……nothing compared to what others with Friedreich’s have to go through every day of their lives.  So this bike ride isn’t just about the money. Yes, we need to continue on with research to beat this disease, that is the priority.  But we also need to realize that all people need to be respected!  We are all different- NOT ONE PERSON IS THE SAME.  So that is a driving force also.  I watch all too often the ignorance and the unkind ways of some as they look at the girls.  They look at the wheelchair and that is all they see as opposed to looking at the person.  So the blog will keep you informed of my progress and hopefully open your eyes to some important ways to be a better person.  I know that I am learning everyday.  I hope to continue to learn and grow and help make the world a kinder place.

With Peace and Love

Always,

Mary

And so it begins!

Here I sit (unfortunately taking a break from my training) battling a very common virus! However, I just returned from a seminar at The Children’s Hospital of Philadelphia and I am very energized to carry on with my journey to the third annual Ride Ataxia.

I will be riding with some wonderful people who have a common goal-to raise money to find a treatment for Friedreich’s Ataxia. Kyle Bryant started the ride with just his dad and himself. He lives his life with Friedreich’s and knows all too well the challenges faced when dealing with this progressive disease. I spent some great time this weekend in Philadelphia with Kyle (interview coming shortly) as well as seeing my two daughters (Sam and Alex both with Friedreich’s) learn as much as they could, as they met some wonderful peers from all over the country who deal with the same challenges as they do. Sam was a guest speaker and had the pleasure of making her “mom” the straight man in a very funny presentation. But I can take a little joking!

I am hoping through this blog to do a couple of things. First, find as many kind souls as possible who will sponsor me on my four day 200 mile ride from Portland Oregon to Seattle Washington. Second and maybe even more important because It’s not always about the money, I am hoping to inspire, touch and enlighten as many people as I can.

This has been a very challenging year – Even for me ! But I continue on with hope and drive. It has been a year of unexpected medical issues, significant loss and relationships gone bad but then also enlightenment!

I will write as much as I can about the small things in life that really are what is so important…..I hope as many people as possible will find inspiration in it!

So……here we go! Hold onto your bike helmets and lets learn together and then do our part to make this world a kinder and gentler place

with love and peace….
Always
Mary