ALS News Today Forums Forums Living With ALS Do you consider yourself a “hero” for living with ALS? How about a “survivor?”

  • Do you consider yourself a “hero” for living with ALS? How about a “survivor?”

    Posted by Dagmar on September 27, 2022 at 1:01 am

    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?

    kim-belden replied 10 months, 2 weeks ago 16 Members · 22 Replies
  • 22 Replies
  • fran-finney

    Member
    September 27, 2022 at 2:19 pm

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

  • mike-cutter

    Member
    September 27, 2022 at 3:00 pm

    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.

    • susan-hahn

      Member
      October 11, 2022 at 2:13 pm

      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.

  • lisa-bonahoom

    Member
    September 27, 2022 at 4:02 pm

    I prefer Warrior, because I never stop fighting!

  • jerry-fabrizio

    Member
    October 2, 2022 at 3:54 pm

    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

     

    • susan-hahn

      Member
      October 11, 2022 at 2:13 pm

      Well stated.

  • brian-stanfield

    Member
    October 4, 2022 at 8:32 pm

    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.

    • cheryl-teribury

      Member
      October 9, 2022 at 12:37 pm

      I agree with Brian.  He covered it all.

      • susan-hahn

        Member
        October 11, 2022 at 2:09 pm

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

  • beth-rookey

    Member
    October 5, 2022 at 3:15 pm

    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 ????

  • andrea-krzysko

    Member
    October 6, 2022 at 3:47 pm

    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.

  • fsr1318

    Member
    October 6, 2022 at 5:36 pm

    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!????

  • pauline-kaza

    Member
    October 9, 2022 at 10:54 pm

    A Survivor

  • bill-corrigan

    Member
    October 11, 2022 at 8:56 pm

    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.

  • pauline-kaza

    Member
    October 13, 2022 at 6:43 pm

    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?

  • pauline-kaza

    Member
    October 13, 2022 at 6:50 pm

    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.

  • kathleen-b-katie

    Member
    October 19, 2022 at 4:35 pm

    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!

  • cheryl-teribury

    Member
    November 23, 2022 at 8:26 am

    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.

  • kathleen-b-katie

    Member
    April 18, 2023 at 8:59 pm

    I am fine if any one wants to use the ‘Striver’ adjective!  We are a community of persons unlike any other that I know of—because we had no choice in belonging…yet we must, and we do so.   Prayers for all strivers, caregivers, family & friends who truly are ‘there’ with us & for us through this devastating disease of  continuing ‘last time’ situations (something shared by a pALS with our ALS Clinic social worker recently).   Profound.

  • Amanda

    Member
    April 19, 2023 at 12:08 pm

    Katie,

    I love the spirit and meaning of “Striver!”  This thread is filled with so much thought provoking ideas. I’m so early into this journey, and I haven’t lost what I would consider to be any “Big” losses, yet.  I can still walk, talk, work….all of these adjectives overwhelm me to be honest.  Sometimes, I feel that this all isn’t real and yet I know just how real it is!  And, I’ve watched over a dozen family members die from ALS, so I definitely know how the future looks.  When I hear, “ALS Warrior” I think of anyone, pALS, family or friend who purposely advocates, educates or supports our community.  Therefore, I’ve always considered myself and ALS Warrior!! Now, even that holds different meaning.  For now, I just want to be Amanda, the pALS hoping and praying that Tofersen will be approved, and will accomplish what it was intended to do, and that more treatments for other types (lack of better way of saying it) will be found in the near future. Words,a word, or title can be powerful, even inspirational…..Striver, striver sets well with me. I continue to strive to promote awareness, research, support, positivity and ALS cures!  Yes, I do like Striver.

  • kim-belden

    Member
    April 20, 2023 at 2:27 pm

    Neither.  I’m just a sojourner.

  • tfsimmons

    Member
    April 20, 2023 at 3:41 pm

    My husband is my “Absolute Legendary Soulmate”… ALS could never begin to define him.

  • brian-stanfield

    Member
    November 22, 2022 at 1:05 pm

    Yes Katie – I’m a Striver!

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