Late the other night I did my usual email check and was floored to get the following email:

Open your heart?

Rumor has it that the venue for your recent fundraiser did not have accessible rest rooms and all wheelchair users were in the back of the room where they could not see.  Why lump all the wheelchairs together? What’s the difference.   How humiliating!   Free venue or not – Hope it was worth it.  A little compassion is priceless.

I will be honest, it took the wind right out of me.  Of course I am overly sensitive to a fault.  I dwell on the mistakes I make-and I make a lot of mistakes.  I dwell on whether or not I make the right decisions and I am constantly over thinking almost every move I make.  But this was a direct hit on my very passion.  My passion to treat all people with dignity.  The email was signed but signed with first name only and the email address was not familiar to me.  So I guess since I don’t know who this person is, but they know me(or think they know me) I will address the issues here.

first, it appears they were not actually present at the event.  So wouldn’t a more questioning maybe a kinder email been appropriate?  The issue of the restrooms: my girls have used the rest rooms before.  I have learned that there is a difference between a newly renovated top of the line historic building that did not have accessibility and a historic building that do the best they can with the space and constraints they have.  The Owenego is just that.  They are not the best but are FAR FAR from the worst.

The issue of LUMPING the wheel chairs together were done with the utmost concern and I personally put all families (that I knew were coming) together in a place where all wheelchair users could get to the food and to the raffle room.  I felt that would be the priority for most.  Again, a decision I made alone feeling it was the most considerate decision.  Anything under 10 at a table doesn’t get a table at all.  We just are not a committee big enough to find seats for everyone.  There were many figuring out seating and many who could not see.  If someone had mentioned not seeing we would have been happy to move about for a dance number.  Other than that there was not much to see.  Someone asked me if in the future I could stand on a box, no one saw me!

The morning of the event we were faced with rain, wind and the unknown of whether it would get worse or better.  We ran and panicked trying to change the room around so people would not get wet!  We were all packed in that night but for the most part I think people came together with a common goal.

And the DIFFERENCE that email author asks?  The difference is that I can move more freely around the room as I wanted. The inside of each of us is the same (for the most part but I can not ignore that my girls don’t have the freedom to move around as easily in a large venue.  So in my persepective I “lumped” them near the food!

You just can’t get close enough to that Outback Steakhouse food as far as Sam is concerned!

So I apologize to EVERYONE if my decisions were preceived as uncompassionate or uncaring.  But I do wish the emailer had sent a more questioning and sensitive email. Or identified them self!  I can’t imagine they know me at all!

Please weigh in and let me know if I was off base.  I am open minded and am happy to look deeper within! I don’t mind the people who know me judging my actions.

Thanks very much for your input.  I look forward to it!

And by the way since it is my quote I will stand by it……a little compassion IS priceless!

In Peace, Compassion and Love

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