Mary Caruso

The feeling is so great I just could never describe it to you!  Accomplishment, camaraderie, pain, self discovery the list just goes on.  I am proud of myself I have to say.  I really look back and can not believe that first I even did this and then that every morning I would venture out there, not knowing what I was heading for AND after stopping at the lunch break-sopping wet and freezing cold I would continue on!  Why did I do that?  I know the short answer and that is because I felt I needed to see what a true challenge was like!  I wanted to try in some small way to really feel what Sam and Alex go through on a day to day basis.  THAT  I have accomplished!  TA DA!

On Wednesday as I was coming in the front door of the hotel my cousin Jackie was coming in back…..it was such a wonderful feeling!  Part of my family traveling across the country to cheer me on and to hold me up!

Jackie holding me up and sending me out day 4

But that is what Jackie does.  She is always there in time of need and has a strong sense of responsibility to family!  She put her life on hold, her family on hold and told me she was coming!  And she worked!  She immediately became part of the SAG team….she blended with the team like she had been here all week.  Then when we got to the conference they put her to work drawing blood!  They really put her presence to good use!  It was great and she is so supportive to me.   

The last day there was rain in the forecast, so I got my dad’s shirt out again feeling really confident that it would once again stop the rain.  But it did not.  I traveled out a little bit disappointed and began pedalling kind of pissed at him!  Then as the hours went by I started to realize that he was still with me.  It was just like him to throw me a bone (the sun on Wednesday was the bone) but he felt that I had to now work a little bit.  And work I did even on the last day. BUT as I was riding down this busy industrial road for about 7 miles as each tractor trailer passed this odd thing would happen.  There would always be an opening up of space just in time as the truck passed.  That was one of the hardest things for me, and he somehow orchestrated a safe passage for me.  So he was still with me just as he and my mom were with me the whole trip!

That is me in the distance-YES riding in the traffic IN the rain!

made it to the top of the "big ass" hill. looking back people were falling everywhere!

On the last few miles we as a team had the challenge of climbing a huge hill.  The SAG group called it a “Big Ass Hill”.  They were right.  They tried to bring us around the hill but the traffic in the area was way too busy to do that.  So we broke just before the hill to have lunch and before lunch there were all kinds of instructions about how to do this hill.  I was feeling very nervous…..first we had to ride in a HEAVY traffic highway then we would take a right and there like a wall was the 21 percent grade hill with a sharp right hand turn and it was wet.  Quite honestly I had decided before I got to it that I was going to get off my bike and walk the hill!  I decided on day two that I was up for the challenge but I was not going to be a hero!  So that is just what I did!  I turned the corner happy to make it through that GOD awful traffic and I saw the hill like a large wall in front of me.  As I got off the bike I could see people falling like dominoes.  The trike in front of me was sliding down towards me.  People were helping team mates all over the place!  It was a mini disaster with each of us helping the other!  I know somewhere there will be photos of it.  It was high, wet and very scary.  Even climbing on foot it was a challenge.  There were only three people out of the 70 who rode it and one of them only half way up!  The biggest concern was getting the trikes up as the people in them could not get out and walk.  They all have friedreich’s ataxia! Being grateful that I was able to walk the least I could do was help others who could not.  We all got up to the top and as each person rode into our gathering place before riding into the conference each and every person was cheered in by fellow team mates! It was so invigorating and moving.  It was one of those life changing moments.  We made the challenge and had all become so close!

These guys made each day in about 3 hours blowing through the lunch stops! I rode with them by day 4

Then we took role call to be sure everyone had made it up and was accounted for and we move forward like an army.  An army of friends from all over the country making a difference for all those who have Friedreich’s ataxia and even for those who do not.  Riding into the conference was amazing!  We took a whole lane of the road with a large RV camper protecting us from behind.  There were cheers and tears and hugs and kisses!  I will never forget this experience and I think I am a better person.  I have had the opportunity to spend many hours in the open air just thinking about my life and what I could do to be a kinder person, I have challenged my fears and pushed myself physically.  I have met some of the most unbelievable people and they now have become part of who I am!  

The end!

Thanks so much for all the words of encouragement.  Thanks to Laura, Suzie and others who have watched out for the girls while I was away and thanks to Jackie for flying in to be part of the excitement for me!  You can all breathe a sigh of relieve that I will not longer bug people with links to the blog.  I will however keep it up and try to write stuff at least every couple of weeks.  So please sign up for the blog or at least check in once in awhile!  I remain humble and grateful for all that I have in this life…….well maybe a little more grateful!

In Peace and Love

Always,

Meir

Paul and Susan relaxing. Paul is a great singer but even better friend!

Thank you all very much for the prayers……………..BECAUSE  THEY WORKED!  You guessed it.  Today we all got sunburn so that means there was no rain!  I woke up this morning at a reasonable hour of 4am.  That is an hour later than it has been, I guess I am getting used to the West coast time and should be completely used to it by Friday when I come home.  When I looked out the window into the parking lot I saw rain and I just wanted to crawl back into bed and hope that no one would notice that I was not in front to ride.  BUT I didn’t!  Instead as I was going through my clothes to find anything that wasn’t filled with mud when it came to me.  I took from home one thing that belonged to my mom and one thing that belonged to my dad.  I came across my dad’s old thermal shirt that I happen to wear all the time.  My dad had such a soul it was amazing.  I know I have mentioned so much about my parents that people who didn’t even know them…..now know them.  I decided I would pass on the special biking clothes and put his shirt on.  I had such a sense of peace when I did it.  I piled on the rest of the gear and headed down for breakfast.  Everyone was eatting and getting ready to assemble in the front of the hotel as we do each morning joking about the rain and I was getting sicker just thinking about being soaked to the skin yet another day.  I can admit to everyone today about yesterday because of course yesterday is a thing of the past, but I actually sobbed twice on that ride yesterday!  YES cried like a baby!  It was really the most horrifying thing I have ever done.  How in heaven’s name I made it through is just amazing to me! But I did make it through.  And today is even more amazing because after I put on my dad’s shirt the rain stopped and the sun actually came out.  AND the ride was the most enjoyable experience I have ever had!  We headed out in a large group of about 20 people.  Dave Lynch was among us and of course Amy headed the troop!  

The first few miles was a lot of traffic but traveling through it 20 strong was a sign of solidarity-you know we can get through traffic WE CAN CURE FRIEDREICH’S ATAXIA!  YEAH!  i was feeling really great about what we are all doing.  Most of the day was amazing……..beautiful landscape, coffee shops,  long country roads, coffee shops,  antique shops, horses, coffee shops.  We even had quite a few miles on a designated bike trail.  It was great.  I ended up hanging most of the way with Tom DeCotis.  

Tom-he is NOT drinking coffee!

He is the chairman of the board on FARA and a very humble man.  His accomplishments are way too numerous to mention and his credibility like no other.  But besides that he is a wonderful man; funny, intelligent, kind and a very good friend.  We enjoyed some good coffee together (not great but good .  It was a perfect day!  The route was 66 miles I made it to 52 and my legs turned to rubber.  When I say rubber I don’t mean like a tire I mean like and elastic band!  So I knew when to SAG it in and head for the hot bath and biofreeze. I did learn a lot today: *Conquering your fears is an empowering thing *self discovery helps you grow no matter what age you are and most importantly  *the advil bottle is not a package of m & m’s!  

The excitement is mounting and people are really feeling good about our ride in tomorrow.  Thanks for reading and thanks for being part of looking for that treatment for my beautiful, wonderful daughters!

In Love and Peace

Always,

Meir

Amy-now a part of my life!

Well, I thought of maybe not putting a post in today!  I would love to write about how we traveled lovely country roads in the beautiful sunshine over gentle rolling hills.  Everyone would sit back and say AHHHH I am so envious of that Mary I wish I were on that ride with her.  The reality is………..when I woke up it was dry and I was so excited.  There is something about riding for hours in the driving rain that really reeks havoc on your mental well being.  I packed away the layers of rain gear and said this is going to be a great day!  The SAG crew reported the night before that it would be a much easier day……… with no highways and really nice rolling hills.  They did report that the route did have spots without bike lanes.  Oh yeah and there were spots that did have drop offs.

As we gathered outside the hotel within 10 minutes the clouds rolled in and the rain came a fallin!  I went back in and put all the layers on again!  The rolling hills were about at a 90 degree angle.

the group! um I am not sure I want to go!

kyle bryant trying to entice out into the pouring rain!

the morning gathering

 At one point I thought I must have been hallucinating because I looked ahead and there was this vision of three very steep hills one after another.  I could not imagine how I would get up there.  But as I got up to the top there was this great sense of accomplishments.  AND we did have a great 10 miles when there was no rain at all, so when I got to the lunch break I packed up some of my rain gear and gave it to a crew member.  As we headed out the landscape was beautiful, we traveled along a river and there were horse farms after horse farms.  But after about another 10 miles the sky opened up and the rain just pelted us for the next ten miles.  There was absolutely no visibility and the logging trucks came one after another.  At one point there was a drop off of about 20 feet, the bike lane was MAYBE a foot wide and the tractor trailers were coming within feet of us.  The really scary part is that they are always tandem, so the first part goes by and you have to brace yourself for the second part while hoping to God that you don’t veer off even a little tiny bit.  Paul would yell from behind me “JUST KEEP GOING……………….”. HOLY COW!  

OFF WE GOOOOOOOOOOOO

But I did it……today we did 48 miles, pouring rain, steep inclines, winding roads, I fell once, Amy fell once -IN THE ROAD.  But I saved her life by running into the road to stop the traffic.  She is fine!  Paul sang about 10 country western songs from his ipod and we all had fun!  And by the way Paul has one of the transmitters on his bike so we are always the green dot on the Ride Ataxia GPS tracking page.  That would be the last group NOT the first group.  I will admit I am tired tonight.  The thought of more rain tomorrow is disgusting to me.  So we are not praying enough for sunny weather because tomorrow does not look any better!  Tomorrow’s ride is 68 miles and quite honestly today people were dropping like flies so if I can’t make it past 50 I am taking a free ride card!  

Thanks for all the incredible words of encouragement…….IT’S KEEPING ME GOING.  Along with the fact that during the ride I will occaisionally hear the phone ring with Sam and Ally’s rings.  I kind of feel like there are there with me when that happens.  

Hope all is well back in Connecticut and the sun is out!  I am getting a little bit homesick!

Until tomorrow…………

In Peace and Love

Always,

Meir

the end of 48 miles! my hair was actually sticking straight up filled with gravel!

I DID IT!  I made it 48.5 miles.  But I have to admit today was 60 miles……so if anyone wants any money back let me know.

The day started off on a bad note.  I woke up at 3am (6am our time), I just wasn’t used to the time change yet and I was really REALLY nervous.  I am not ashamed of the fact that I have all these fears that I want to face…..it is just the way it is!  So by the time I ate breakfast I was ready for lunch.  I was so afraid to get on the bike that I took it on the trolley to the start off point.  NOW that was ridiculous!  People looked at me like I had three heads.  Especially when they asked me what I was doing and I told them going on a fifty mile ride!  So we all sat at the Oregon State Hospital University as we gathered and drank water, listened to Kyle Bryant talk with so much inspiration, and tied up some last minute “housekeeping” information.  I was really sick to my stomach.  As we watched the rain come down, I watched people putting on more and more layers of clothing wondering how the heck I was going to get out of this thing without anyone noticing that I didn’t ride!  But as the kick off got closer I just made myself get up and layer the rain gear.  I had to do it because if I didn’t I would never be able to tell Sam and Alex that they had to reach for more strength when the going gets tough again!  So I did it!  I piled on the gear……I looked like LYCRA WOMAN!  It was a claustrophobic’s worst night mare …..I promise you.  I had on three pair’s of pants, four shirts plus a rain jacket, helmet, skull cap, ear muffs, gloves, neck warmer, bike shoes with these awful gortex boots over them.  It was freezing but I was sweating profusely!  Then the moment came……we took off!  I just got on that bike and rode like no tomorrow!  Into busy downtown Portland.  I even rode by my trolley stop that the bike and I took to get to the start off.  But I rode with a group of about 20 people and I watched in amazement as the proficient bikers took over and lead and followed those of us who were not that steady!  As the miles went on I saw kindness and camaraderie at it’s best!  We all looked out for traffic, stop lights and everything else you had to watch and each other.

Through it all I fell once…ouch!  Had to fix the chain on my bike once, watched a bike mate who  took a terrible spill on the railroad tracks taken away in an ambulance- stitches!  Rode in pouring rain, in sleet, in wind and a little sunshine! After my first flat at mile 38 I ran into big trouble!  The gravel in the bike lane was bad, so Steve fixed my flat and sent me on my way, within 5 miles I had a second flat!  We thought it was just a slow leak so we pumped up the tire.  Paul and I continued to fill my tires for another ten miles every 1/2 mile until boom, second flat!  I was then picked up by the sag van and brought in at mile 48.5………sorry!

nothing to say here.....check out the tractor trailer coming!

I knew there would be great things about the ride and one is Amy!  I met a new person who is funny and kind, caring and sweet. Amy was a leader of the pack in more ways than one.  We got to take in some great miles together. We are two moms with one special thing in common, we have kids with Friedreich’s ataxia…..we are sick of it and want to do something about it!  I now have made a great new friend, one that I will cherish from this ride on……..I am now a step closer to becoming a better person because of Amy!

a quick minute to snap a shot and drink some water! Amy my guardian angel!

I was soaked to the skin…..every layer.  But I was not cold, I was not discouraged and I am proud to say I feel like it has been a good lesson.  There were miles where we couldn’t see in front of us.  The route today was like traveling on the Berlin Turnpike………there were huge tractor trailers and lots of lumber trucks traveling at pretty high rates of speed.  The water that comes off those trucks is unbelievable!  So we were just told that tomorrow will not be as busy as a route.  The road does have some curves and small bike lanes with drop offs on the outside without guard rails.  But I am ok tonight.  I think I will sleep better and I am hoping for a day without rain …..at least without DRIVING RAIN!  

Amy-minus the gravel, dirt, wet and wind!

Thank you all so much for the words of encouragement!  It means everything in the world to me

With Love and Peace

Always                                          

AHHHHHHH! Just got handed the Biofreeze!

Meir