Mary Caruso

Help find a treatment for Friedreich’s Ataxia!

I promised that I would wait a day and absorb my thoughts about a recent set back personally.  I am not sure if it helped or not and I still have a giant lump in my stomach,  but at least I waited!

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


  1. the author is just a weak, cowardly, selfish individual and if they knew you, would have never questioned your intentions – let it go and feel sorry for the asshole (I know you said to be kind, but I couldn’t resist) – love to you and the girls, your friend debra

  2. Jeff Golanec
    6:13 am on September 23rd, 2009

    Mary

    I am disgusted to hear such a negative comment or suggestion by a heartless individual. This was Deb’s and my first year at your fundraiser since we just learned of Kaela’s diagnosis in Nov 2008. I think you did an amazing job and we are greatful for what you do for ALL of the FA families. If the issue was such a big deal the night of the event then why didnt this person say something that night. If they werent at the event then they should just keep their mouth shut. This person is obviously very sophmoric and should keep their comments to themselves. Again thank you Mary for all you do. We had a wonderful time.

    Jeff/Debbie Golanec
    Kaela 8 (FA)
    Kyle (NT)

  3. Laura
    6:37 am on September 23rd, 2009

    The person that wrote the e-mail does not know you at all. You are
    a very kind and compassionate person. I know you had noting but good
    intentions for everyone at the benefit. But you can not always make everyone happy. It is a fault of yours and mine too! We try to please
    and strive to make people happy but someone was not comfortable at the benefit and I am sorry for that! As a committee member for the past seven years my hopes are for people to have a good time and feel good
    about the goal of the fund raiser TO CURE FA!

    Keep smiling and working to make this world a better place!

    Love me

  4. Suzy
    6:38 am on September 23rd, 2009

    Ok Mary, here goes. You asked for honest opinions and feedback. I will be brutally honest (in hopes that maybe this person will read your blog AND the posts) SHAME ON HER! Let me repeat…SHAME ON HER! Cause I don’t see her getting up to organize a fund raiser of this capacity to help other people…or volunteering for a committee such as this to even know a little about what goes on.

    If this person had any knowledge or experience whatsoever regarding events such as these, she would understand that first, decisions that are made are usually made for the benefit of the people attending…lets face it…if someone is comfortable and happy at an event they will be more apt to continue supporting your group…second, all decisions that are made (and this goes for every aspect of life) CANNOT POSSIBLY PLEASE EVERYONE! So you sometimes come across a disgruntled guest and try to smooth things over as best you can. I was there that night…and wandering around amongst the guests both in chairs and on their feet…I did not hear one single complaint about the event…not one! and believe me, because I have hosted these types of events before, I always make it my business to wander around listening for just that…things I might have overlooked that can make each event better.

    So, as far as I’m concerned, the only person who should be “beating herself up” is the person who made the complaint…and if she had any compassion for anything or anyone, she would have addressed this situation in a different manner.

    I stand behind you and your decisions 100%. I could only hope that somewhere along the line, this person can open her mind and heart a little to try and see the “other side” of things. And maybe show a little compassion along the way?

  5. Tracy
    8:20 am on September 23rd, 2009

    Hi Meir,

    Lets just chalk it up to one more insensitive person, who I might add…I am certain…has not walked in your shoes. How could anyone question you about this PERIOD….they should be ashamed of themselves. I love how people always have an opinion.
    Anyone who knows you and the girls…your struggles…daily life, etc….
    Loves you….PERIOD.

  6. Sharon
    8:52 am on September 23rd, 2009

    Dear Mary,
    This makes my stomach turn. Cruel beyond belief. Also, cowardly. When we began fundraising over 4 years ago, a similar attack was launched against us. A person decided to send a nasty e-mail to Stephanie calming our events were too expensive and people were expected to spend even more money once they arrived. This person was referring to our first backyard event. Professional Chef prepared the food, live entertainment, open bar, beautiful auction items, Dr. Perlman guest speaker, plus Stephanie sharing her story to our guests. $50 per person. The nasty e-mail writer didn’t even attend the event, but her mother did. So where do you suppose this girl got her information? Yup, from her mother, someone I thought was my friend. Needless to say, those people are no longer a part of our lives.

    Look up Mary. You’re making a HUGE difference that speaks volumes of your character and grace! Bless you!

  7. Shelley
    9:18 am on September 23rd, 2009

    Good Morning Mary,

    I am so sorry that you have to go through something like this. Since the first time I met you many years ago as the realtor for the house we were buying, I’ve had nothing but the highest regard and respect for you. I don’t waste time on a lot of bs. This is just plain and simple: you are one amazing woman. You’ve had a lot to deal with in your life, mostly on your own, but you rise to whatever comes your way and just get the job done! I’ve never once heard a bitter word from you—whether in dealing with the girls or your divorce. As our friend Barbara Corso would say: the strongest muscle in the body is the tongue—or to be more current the anonymous email—use that muscle with great care.

    Keep your head and chin up! You are and will continue to be a source of strength for many. The bitterness your blogger is expressing will only continue to cause that person grief.

  8. Jackie leonard
    10:23 am on September 23rd, 2009

    Meir, It is obvious as others have stated that this person has never met you or suffers from some type of delusional disorder. You can not find a more compassionate person who is concerned with preserving each and every human beings dignity and feelings. If this person would please come forward and identify themselves I would like to personally discuss this incident with them and how much unnecessary time you had to spend feeling badly about this incident. Life is to short as you well know to spend time on people who are not nice as this person was.

  9. Norm
    10:44 am on September 23rd, 2009

    As a “Facilities Professional”- someone who deals with accessability issues every day, I can safely say this person is out of touch with the reality of trying to provide access with limited resources. Take a trip to Las Vegas if you want to see what money can do for access. Even Clinton Crossing is a model for what money can do to enhance access. Owenego is a grand old place- lots character and charm. What a great place for an event like this. I’m sure there are more accessable places than “The O”, but is a big institutional hall what the occasion called for?

    Time, money and awareness are required for full accessesabilty for everyone. Folks that care are willing to take one step at time (no pun intended) toward that end. I have a few colorful expressions for your critic, but I’m too much of a gentleman to state them here. As always- I’m here for you!!

  10. Allison
    12:32 pm on September 23rd, 2009

    Mary :

    Everyone you interact with, be it strangers you bump into, people in the community or your closest friends, know very well that you work extremely hard to spread your key messages: messages of inclusion for all people; “just be nice”; kindness; focusing on the positive in life; the importance of consideration of others; and, most aptly relevant in responding to this person’s email – - making the best of your situation despite adversity – use what you’re given and make it work! (and do it with a smile on your face!). You not only promote these messages, but you live by them on a daily basis and you uphold them while working very hard to coordinate and host the benefit dinner every year. These key messages are the core of you daily life, and the core of the benefit dinner.

    The audacity of this person to write to you to complain about circumstances you cannot control or circumstances that you or any one of the committee members would have been happy to pleasantly address if anyone actually at the fundraiser had brought them to your/our attention is outrageous. What’s more incredulous is that this person is writing to you not based on his/her own personal experiences, or speaking up for a friend, but based on a “rumor”.

    Instead of writing a “rumor” based email full of complaints and sarcasm, this “compassion” driven person should have listened to one of your messages: “just be nice” – and offered some pro-active suggestions for the next fundraiser. Perhaps he/she has suggestions for a free venue that is even more handicapped accessible than the one level Owenego with ramp access to the restrooms? It may not be “ideal”, but it is what we’re given so we make it work!  The “L” shaped floor plan of Owenego itself isn’t ideal for everyone to see – many people could not see – but it is what we’re given so we make it work!  The rain that night was not ideal, and unfortunately divided many guests up, regardless of their situation, but we made it work!  (And raised A LOT of money for FA!) Just like we work hard to make these things work despite adversity, if, at any time, a guest’s dissatisfaction was brought to the attention of anyone on the committee, I am fully confident that we would have found a solution, we would have made it work….and done it with a smile on our face.

    Instead of focusing on the positives of the event, the positive ways that issues, if any, could have been addressed at the time they were occurring, or seeing what you saw as compassionate and positive – for example, considering long time friendships and putting friends together at tables, regardless of whether they were in a wheelchair or not — this person instead chose to focus on the negative and complain.

    So in true Mary fashion – you should just treat this complainer’s email as just another opportunity to make the best of an adverse situation and continue to spread your key messages, to this person especially.

    It is obviously very easy for this person to complain and focus on the negatives – that’s too bad. It must be hard for them to give constructive suggestions for improvement in a nice manner. So stay true to your key messages: just be nice & focus on the positives — invite this person to put in some hard work alongside you to implement their constructive suggestions for the next fundraising event! Hopefully, after they put in hard work, no one will sit back and write an email to criticize them, but they’ll be commended for their overall good intended efforts!

    GREAT JOB AGAIN, MARY, FOR EVERYTHING YOU’VE DONE TO HELP CURE FA!

  11. Bri
    1:11 pm on September 23rd, 2009

    Meir,

    I understand the lump in your stomach, I would be the same way. But I feel like you need to take a step back and realize how selfish and inconsiderate some people are. You have so much trust, and like to see only the good in people that when someone like this anonymous a$$ comes along you are just shocked and taken back! It’s understandable. However, this person should have no effect on your life. For all those who know you and came in contact with you for at least 30 seconds, it is so clear how much of an amazing person you are. Your heart is so full and you are constantly doing everything you can to help other people. You would NEVER do something (especially at your own fundraiser, and to people who have the same disorder as your own kin!!!) to make them feel left out or out of place. I was there in the morning while setting up and it was very difficult to try and find a spot for everyone. I feel we came up with the best floor plan with the space given. Some tables were larger than others and that’s what it comes down to. This person was clearly not at the fundraiser and did not see how much effort went into this. So, all in all, i’ve learned there are always going to be people who try to rain on your parade. All you can do is keep your head up, be confident with yourself and know that you are doing something amazing. You are an amazing person and I hope this person can learn a thing or two from you.

    Thanks for everything Meir, love you!

  12. John D
    7:57 pm on September 23rd, 2009

    So I wasn’t going to post my feelings for all the world to see but caution to the wind and here goes. First off Mary for the past 7 years you have given your heart and soul to this fundraiser. And those past fundraisers the only negative comment that I’ve ever heard is that Craig shouldn’t be allowed to pick out his outfit. Second, the person that authored that hurtful email obviously does not know a single thing about you and what you stand for. That person could learn a lesson or two from you. Do not give this person another ounce of your valuable energy. Instead hold that person up as an example of how not to act. Make lemonade from lemons. It was a great night for a great cause. Do not let one bitter knucklehead ruin it. End of story!

  13. Laura
    7:04 am on September 24th, 2009

    THANK YOU EVERYONE WHO REALLY KNOWS MARY!!!

    She is the best and so are her girls! Love and truth prevails……….

    Love me

  14. Hi Mary, anyone who questions your intentions must have a screw loose…..They must be jealous, angry or not wrapped too tight…..They probably neeed a paper heart!!!!! Everyone I saw at the dinner was having a great time and those in wheelchairs were naking their way happily all around the place!……I’m sure they’re not organizing any fundraising dinners! pan

    (P.S. – I probably shouldn’t be commenting)

  15. Johnny D
    8:03 pm on September 28th, 2009

    It is unfortunate that this person cannot look at a situation as an adult. You run a fund raising event to cure a disease that personally affects your family; the free venue means you are able to allocate more money to gaining that cure. Sadly, the day of the event weather did not cooperate with you and you were forced to squeeze everyone into a smaller area. Not ideal but what can you do? The person who sent the email is obviously ill informed and off base.

    Mary, you are to strong of a person to let something so ignorant affect you.

  16. Tom Hopkins
    7:27 pm on September 29th, 2009

    Hey Mary

    You know a lot better than the rest of us that the call to service and love requires saintly patience. Stay the course. Love and prayers always for you and the girls and all our FA family.

    Tom and Caroline Hopkins
    Quinebaug

 

Another year! Another group of AMAZING people and most importantly one more step closer to a treatment for Friedreich’s ataxia.  This year’s fundraiser was a bit more difficult considering the state of the economy. But as usual the people who donate still donated and the people who come still came!

And I have to take a minute to interupt this post, BECAUSE speaking of wonderful people and the real friends who never judge, who accept and love.  I was thanking the wait staff for their hard work and dedication to us on many levels and made the mistake of leaving out a very very important person in our lives.  Sandi Shelton (www.sandishelton.com) just passed it off as nothing when I never mentioned her name. There you have it!  A true friend! And you know what she really meant it, I know it!  She is kind and real, the kind of friend we should all have.  So SANDI!  Public apology…….you are the last person I should have left out!!

It is quite amazing to me how small the world really is.  Each year we get a few more people who so graciously give their time and money to us.  Each year those people seem to walk away with a little more insight, a little more compassion for their fellow human being and a whole lot closer to those who they met during the evening.  The reason I know all this is because I get the best phone calls and emails giving me support and guidance from the new people at the event and from the people who have been there every single year.  Isn’t it great that we can all continue to learn from each other and more importantly grow from our experiences together and become better people :-)

I am blessed in that way because I learn so much from my girls.  I know I say it a lot but this year especially has been an enlightening year for me.  Having lost so much personally and having had to overcome so many stumbling blocks. I guess also for having had to fight  on behalf of the girls.  It would be easy to become bitter and angry during any life changing events, and believe me it would be very EASY to become arrogant and cold having to fight for simple rights that others enjoy every day.   But I do not, and the reason I do not is because each and every day I witness true strength through my girls.  I watch two totally different human beings struggling for the same rights and the same desires to be accepted by everyone.

Sam is so rough at times and Alex just keeps it all in.  Instead of fighting them I have learned to see them for their unique qualitites and build a respect for each of their personal traits.  Do I always love what they do or say? NO!  Do I always agree on their way of getting things done?  NO!  But I have learned to respect their views and accept their ways. This can be applied to each of us in our own personal lives and if we could all learn to accept and respect all people for their true value it would make the world better.   I have lived humiliation through the girls eyes and felt first hand the lonliness from being tossed aside.  Why do we do this?  Why do we judge so much? Why do we have this picture of what people SHOULD be like?

I was watching a show with Matty yesterday on a kid channel. There were these two teenagers trying to “dump” one of their friends.  They plotted to lose him by finding a “nerd” to pawn off on him.  WHAT THE HECK!  Well, they found this over weight kid with pimples on his face and bad hair and tape on his glasses and very awkward.  I watched in horror as Matty witnessed the boys friends so carelessly arranged the handoff at the expense of the “friend” and the “nerd”.  Luckily I was able to say a few choice words to Matthew like, gee that doesn’t seem nice, AND  they don’t know that boy, they are really making a bad judgement about who he is and gee that boy could be a best friend to one of them.  What was that teaching a very young audience?  Ok am I now being overly sensitive?  I don’t think so.  This resinates to our every day life. This does happen each day in society.  We have to stop and think about how we treat each other and how our kids witness how we treat each other.

STOP, get off the rat race train!!!! Use kind words, understand the other persons struggles, look for each person’s value- because every single person has a value!  LOOK FOR IT!  Just beacause someone may not look like society tells us they should…….LOOK past that!!! Feel compassion for each other and understanding!  Connecting keeps you young and alive. We can each connect every day by some doing simple things; smiling, laughing, crying, human touch, listening, looking someone in the eye…….the list goes on.

More importantly realize that no matter what age we are we can still keep learning and don’t discount the value in learning from someone much younger!  You see a new perspective and feel the joy in their passion! I continue to learn from the girls and the wonderful friends they have, being surrounded by a younger perspective keeps you alive!

If you can’t be open minded to these wonderful joys of life and breathe in the miracles that life has to offer… reevaluate your life.  If you can’t feel the humility of someone being chastised from society rethink your values.  If you can’t stop and aline your priorities, if you can’t be open enough to listen and live your life with passion and kindness, then you should just lay down; because my friend, you are already dead!  Don’t die out……choose to live your life in the most positive way you can!

In Peace and love

Always

Mary

  1. Suzy
    2:28 am on September 20th, 2009

    Once again, my friend, you say it loud and clear! BE NICE! DO NICE! It goes a long long way! Thank you Mary, for all your wonderfully inspiring words… thank you for the gift of your girls and allowing me to share in their lives (I learn so much each moment I spend with them)…but mostly, thank you for being my friend…I know with you its unconditional…and thats the best kind of friend…I love you!

  2. Ohhh, Mary1 I am sorry that you have to spend even ONE NANOSECOND feeling bad about this person’s remarks! How unfair it is that some careless, thoughtless, anonymous email can derail us like this. (I know because I’m the same way.) But, trust me, I was there, too–and I, too, was mingling around in the crowd, and people were happy, they were delighted with the food, with the venue, with the company, with YOU and the GIRLS, with everything. People LOVE being a part of this evening with you, and the good feeling just permeates everything! I don’t know who would want to make you feel bad, but clearly you were not insensitive. You more than anyone I’ve ever known extend kindness and dignity and grace to everyone around you. As Laura said, not everyone is going to be happy, and I just hope you’re not going to let this unhappy person ruin what was a totally happy, successful, WONDERFUL evening of people coming together and feeling great about seeing you and the girls and all the progress that FARA has made. The Owenego is NOT a state of the art facility, true, but its warmth and charm shines through, as does yours! As soon as you can, just take this petty remark and bury it somewhere where it can’t continue to poison the memory of this great thing you did. Much love to you and the girls!

  3. janie
    4:45 pm on September 23rd, 2009

    mary
    I am shocked at the inconsiderate, detached and cold comment this person sent to you. I don’t know anyone who is more supportive of handicapped people than you
    You go to such lengths to make sure everyone regardless of who they are is respected and appreciated.
    The time and energy you put into all your fundraiser events is always based on the needs of others — and you do everything you possibly can to never offend anyone– forgoing your own needs in lieu of the bigger picture of raising money for FA. Please know that this unfortunate comment has no basis in reality
    YOU are a true gift of love to all of us— keep up the wonderful work