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    • #22710
      Dagmar Munn
      Keymaster

      The media often uses words like “hero” and “survivor” to describe someone living with ALS. But are we heroes compared to someone who was wounded in the military and awarded hero honors?

      How about the word “survivor?” In ALS communities there are support groups for family members who have lost a loved one to ALS – called Survivor Support Groups.

      Does this terminology seem confusing to you? What do you suggest be used instead?

    • #22773
      Fran Finney
      Participant

      My husband, when he was living with ALS, preferred “Warrior”.

    • #22776
      Mike Cutter
      Participant

      A Hero? No, not at all.
      And a Survivor? Hardly. More like a Die-or.

      Don’t get me wrong; I’d like to be a Hero to someone; particularly my two teenage boys.
      And Survivor might work some day – post cure.

      Living with ALS, some other words come to mind:
      human living saddened resilient tough week dumbfounded vacant surviving

      It is an emotional roller coaster – as is life.

      • #22858
        Susan Hahn
        Participant

        A hero is someone who purposely places themself in a situation of danger.

        A survivor is someone who has been placed in a challenging situation and handles it with grace and courage.

    • #22782
      Lisa Bonahoom
      Participant

      I prefer Warrior, because I never stop fighting!

    • #22815
      Jerry Fabrizio
      Participant

      Hi,

      I like warrior also.  There is a good song about I am a warrior from the 80’s from Scandal.  The lyrics don’t seem to match this fight though.  I am no hero or survivor although I do like one of their songs, Eye of the Tiger.  Those lyrics may match this fight

      Kayaking is fun if your arms work.  Deep knee bends if your legs work.  Biking is also fun but a little dangerous with the loss of balance.

      Keep on fighting everyone!

      Jerry

       

    • #22820
      Brian Stanfield
      Participant

      Hero? No- I’ve done nothing extraordinary or courageous.

      Survivor to the detriment of others. Survivor’s guilt? Yep.

      I’ve got regular human-like emotions + ALS shit piled on top.

      Great days, terrible days, and everywhere in between.

      • #22847
        Cheryl Teribury
        Participant

        I agree with Brian.  He covered it all.

        • #22857
          Susan Hahn
          Participant

          Agree with Brian. Well said. My son is a firefighter, he’s a hero.

    • #22822
      Beth Rookey
      Participant

      I prefer ‘Warrior’ because I fight this disease Every. Single. Day! Sure, some days suck and I allow myself a pity party, pick myself up figuratively and get on with LIVING with ALS. I try to keep a positive attitude but allow myself a pity party 😊

    • #22831
      Andrea Krzysko
      Participant

      I consider myself a fighter. I have good days when I rejoice and bad days when I dig in my heels. I strive to tip the balance in favor of good days by planning ahead for what may happen and adjusting my attitude about what is important. I have professional and personal helpers who support me in ways that I never even knew existed. Mostly, I try to see each day positively and laugh a loud and happy laugh. It means that I have won the battle.

    • #22833
      Leslie
      Participant

      Two weeks ago I was at my nephew’s 50th birthday party. Upon leaving, an internist friend called me a “survivor”. Afterwards, I mentioned that to my family members. They all said, “Well you are!”. I like it better than “hero”.
      A couple months ago, an old friend texted that he can’t think of me because it terrifies him. So, I will take survivor or hero over terrifying!🙂

    • #22855
      Pauline Kaza
      Participant

      A Survivor

    • #22869
      Bill Corrigan
      Participant

      Definitely not a hero; don’t feel like a survivor either. Maybe a warrior. But I think I was that before. I mean, I did 12 marathons before my diagnosis and you need a warrior attitude to do battle with pavement and gravity. If you want to win, you then battle the other racers as well. I’ve just kept that up.

      What’s new is I am now gracious. Mostly I’m more positive about people too. I express gratitude like I never did before. That is truly helpful. Definitely not a hero.

    • #22882
      Pauline Kaza
      Participant

      I’m not ready yet to be defined by any words other than my name.. Many people have heavy crosses to bear. Why do we need adjectives to describe ourselves?

    • #22883
      Pauline Kaza
      Participant

      I’m not ready yet to be defined by any words other than my name.. Many people have heavy crosses to bear. Why do we need adjectives to describe ourselves? But, I do agree that if you have lost a loved one and you are able to cope, you are a true survivor.

    • #22906
      Kathleen B (Katie)
      Participant

      THANK YOU to all contributor pALS on this thread!!!  I found common thought ground in ALL of them!  And then a word occurred to me: ‘strivers’.  We strive to find answers; we strive to stay positive; we strive for as much longevity as possible! We strive to get up & going each day; we strive to be ‘who we were’ while adapting to who we are becoming as progression occurs (& I think this is what ‘terrifies’ some friends).  We strive to keep others we know & love feeling appreciated & not getting overwhelmed.  We strive the most to ride the roller coaster of physical, mental, emotional & spiritual stress related to ALS disease with balance & grace to help our own well being and that of those we will miss. Kudos to the Strivers we are beginning to end!

    • #22907
      Kathleen B (Katie)
      Participant

      THANK YOU to all contributor pALS on this thread!!!  I found common thought ground in ALL of them!  And then a word occurred to me: ‘strivers’.  We strive to find answers; we strive to stay positive; we strive for as much longevity as possible! We strive to get up & going each day; we strive to be ‘who we were’ while adapting to who we are becoming as progression occurs (& I think this is what ‘terrifies’ some friends).  We strive to keep others we know & love feeling appreciated & not getting overwhelmed.  We strive the most to ride the roller coaster of physical, mental, emotional & spiritual stress related to ALS disease with balance & grace to help our own well being and that of those we will miss. Kudos to the Strivers we are beginning to end!

    • #23115
      Cheryl Teribury
      Participant

      I’ve been thinking about this alot and just couldn’t come up with a “label” that works for me.  I really do feel that Katie got it right.  Striver….That’s me.  (Katie, I hope you don’t mind if I copy.)  I’m relieved to have this settled.

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