Would you join a tribute to an amazing LE advocate?

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carol57
carol57 Member Posts: 3,567
edited June 2014 in Lymphedema

Binney has posted before about Pat O'Connor, the amazing LE advocate whose contributions included creating the LymphedemaPeople website to give our LE patient community information and resources when it simply was not available anywhere else. His work was tireless, including several social media sites to support the many LE patients who needed a home --like we have found here--to seek and share experiences and advice.

Pat passed away on Sunday, and there have been many, many tributes on his various websites and on his Facebook page. There will be a memorial service this Sunday, the 18th and some of us are going to send flowers, in the name of LE patients who have benefited from Pat's lifetime of advocacy work. 

Would you like your name --your screen name, or your real name, whichever you prefer--to be added to the list of people who would signal to Pat's family just how many lives he touched?

I actually love the idea of using screen names, because that is how we know each other in our LE community. 

If you would like to have your screen name included, just post a 'yes' here, and we'll include it in the list of names to be included on a tribute letter that will accompany the flowers. If you would like your real name included, PM me with that information. I'll need to wrap this up tomorrow (Friday) to get the information to the funeral home.

It's a great loss. Pat was amazing, and his LE unfortunately played a large role in his death, and I'm told he would want the world to know that. His contribution to telling the world about LE was truly unwavering.

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Comments

  • GuyGirl
    GuyGirl Member Posts: 182
    edited August 2013

    yes

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2013

    yes!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2013

    me too, yes

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2013

    yes

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  • Marple
    Marple Member Posts: 19,143
    edited August 2013

    Yes!

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  • bingbing
    bingbing Member Posts: 82
    edited August 2013

    yes

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2013

    big yes from me--thanks, Carol!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited August 2013

    Yes.  Thank you Carol.

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  • carol57
    carol57 Member Posts: 3,567
    edited August 2013

    Binney is working on a similar list of names from other LE social media sites, and we're hoping to gather a very long list!

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  • NickyJ
    NickyJ Member Posts: 722
    edited August 2013

    Yes. Thanks for doing this Carol

    Nicky

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2013

    Yes. Thanks so much for doing this.



    I was unaware of Pat and his contributions, but will be checking out the web site. We often do not know who gets awareness and advocacy started, and I am so glad to have a name and person to thank, but so sorry for the loss to the LE community.



    I would like to add my thanks to those of you who started many of the LE threads here on BCO that have helped so many of us who are just beginning the LE path. It is a frightening and confusing one, a very steep learning curve, and you have made a HUGE difference in my life.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited August 2013

    beam me up too Carol. So sad to not have Pat here.Cry

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited August 2013

    Yes. Thank you Carol

    Im so sorry to hear this news :(

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2013

    Yes! Thank you!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2013

    Please include me.

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  • kareenie
    kareenie Member Posts: 339
    edited August 2013

    Yes

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  • toomuch
    toomuch Member Posts: 901
    edited August 2013

    yes

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  • Nitocris
    Nitocris Member Posts: 187
    edited August 2013

    Yes. Thank you Carol.

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  • DiamondGirl
    DiamondGirl Member Posts: 1,046
    edited August 2013

    Yes please Carol.

    I ditto Linda-n3.  Pat O'Connor, we can't thank you enough, R.I.P.

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  • Estel
    Estel Member Posts: 3,353
    edited August 2013

    Yes



    If it's not too late. Just saw this.

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  • KS1
    KS1 Member Posts: 632
    edited August 2013

    Yes! KS1

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  • teacher911
    teacher911 Member Posts: 853
    edited August 2013

    Yes, please and thank you.

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  • carol57
    carol57 Member Posts: 3,567
    edited August 2013

    Not too late! The funeral home has graciously offered to print our condolence/tribute note and our list of names as late as tomorrow morning, so there is still time to add names. Binney is getting a wonderful response from quite a few other LE sites, so the gesture is truly growing.

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  • Marple
    Marple Member Posts: 19,143
    edited August 2013

    Carol, thank you to you and Binney for showing his family our gratitude and sending our condolences.  It will mean so much to them.

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  • carol57
    carol57 Member Posts: 3,567
    edited August 2013

    Just to bookend this conversation, Binney was able to post a similar invitation to join the patient tribute, and lots more than patients asked to participate! More than 150 people 'signed' a note that accompanied our flowers to Pat's memorial service.  

    Here's what we said:

    Dearest family and friends of Pat O’Connor,

    Pat has been a priceless gift to lymphedema patients searching to understand a condition that is truly a medical step-child. We are so grateful for his astonishing wealth of knowledge and for his dogged determination to share that knowledge with all who might benefit. Our lives are certainly richer for the information and the caring support we received from Pat’s website and through his online discussion forums.

    News of his loss has traveled to many corners of the earth, literally, and many, many lymphedema patients have asked to have their names included in this message to you. You will find names shown below, and most of them are the screen names we use as members of the various lymphedema forums. That in itself is an apt tribute to Pat and his work, because it is how he knew most of us, and how we have come to know each other.

    As we sent news of Pat’s loss through the discussion forums and invited members to add their names to our message, the ‘me, too’ chorus expanded well beyond the patient community. So, from patients and from the broader lymphedema community, please accept our heartfelt gratitude for sharing your beloved Pat with us in his lifetime, and our sincere condolences for the loss of such a great man and friend to us all.

    With love and tremendous respect,

    All of the lymphedema people
    whose names are included on the following pages

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  • toomuch
    toomuch Member Posts: 901
    edited August 2013

    Heartfelt and lovely. Thank you Carol and Binney for organizing it.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2013

    I wanted to share this with everyone here. Pat wrote it a few years ago and his family used at his service yesterday.
    Binney

    I am Free



    by Pat O’Connor
     

    I was born with lymphedema. Slowly over the years, I have watched helplessly as my body swells more and more, destroying so much of my abilities of doing “things.” Then came the cancers, the depletion of an already tattered immune system…. the slow ebbing of a life.

     

    I know what it is to hurt so bad…your body screams to die just for relief. I have felt that despair that says, “if only I could go to sleep and not wake up.” I have wrestled with the anger that comes and cries out “if only this stuff would do its job quickly…instead of slowly stealing away my life.”

     

    You struggle with the shadows of the night…the quiet tears that stain your cheek.

     

    I know the shame of being made fun of….laughed at….rejected because my legs were so “wierd.” The heart break of being called a freak. The feeling of hopelessness and isolation.

     

    Some would say I am prison bound…locked away in a body that is overwhelmed by pain, disfigurment, continually eaten up by non-stopable infections…sorrow and frustrations face my every day.

     

    But, I am free.

     

    I am free to embrace the dawn…to bask in the warmth of the morning sun.

     

    I am free to wander through the stars at night…to behold the glory of my God and worship His goodness.

     

    I am free to be intoxicated by the aroma of a rose…glistening with the dew. To rejoice in all the glory of a wonderous creation.

     

    I am free to create beauty, whether through the pen, a camera…a brush…to create beauty in a world where so many create ugliness.

     

    I am free to laugh and to bring laughter into anothers sorrowful life.

     

    I am free to go beyond my own pain…to bring comfort to another…to bring healing to an aching heart.

     

    I am free to go beyond my selfishness…to choose a life of selfless giving to others.

     

    I am free to reach out and touch the heart of another…to bring comfort and hope.

     

    I am free to wipe away the tears of another hurting spirit…to lift them up…to help heal their broken heart.

     

    I am free to journey within…to face my fears…to overcome them with victory in my spirit…instead of living in fear and doubt.

     

    I am free to allow bitterness….to be turned into a sweet nectar.

     

    I am free…to be me. Free to say “I don't want to be anyone else, but me”

     

    I am free to look into the mirror and respect the person I see, to like my values… to know who I am deep inside.

     

    I am free…in so many many ways…seemingly to many to list.

     

    But…perhaps most important…….

     

    I am free to choose who I am and how I live.

     

    I am free to choose life…instead of allowing myself to be destroyed by the shadows of despair or even death.

     

    I am free to love…to dream…to forgive…to choose kindess and gentleness.

     

    I am free…


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  • Marple
    Marple Member Posts: 19,143
    edited August 2013

    Binney, Carol, thank you for your posts.  What a wonderful 'gift' Pat gave to his family and friends when he wrote this.  Another example of his truly giving and caring spirit.  May he rest in peace.

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