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In which she had an impact … in memoriam

Sometimes you meet a person who is on the periphery of your life and yet they can have the most enormous impact in such unexpected ways.  Yesterday, one such person in my life died; she was 25 and honestly, I barely knew her.  Right now you’re probably asking how she impacted my life then.  It wasn’t for the way she died; it was for the way she lived.

 

Last year when times were tough around here because of Keely’s massive surgery and long recuperation, I became involved with an online group of women (and a few men) who had one thing in common.  That thing was a love of a relationship in a television program.  What the program was and what the relationship was isn’t actually the issue; the issue was how having one large thing in common can bond people in an unexpected way.  Through joining the online community, reading the fiction that the community wrote, and discussing various and sundry aspects of the program, I became friends with people that I would never have otherwise met. 

 

I was older than the average person in this community but what made it interesting was thinking and learning about issues from people that are outside your normal sphere of living.  The community was international and the individuals involved were diverse both  geographically, socioeconomically and age wise.  Eventually, I went from LiveJournal friends to Twitter friends and the people in this community actually read my blog and encouraged me to keep it up.  I’m positive that without them, All Fooked Up wouldn’t be in existence.

 

When I first started reading Fan Fiction there were certain authors that really stood out to me and a young girl named Liz was one such person.  She was writing a story that showed an AU (Alternative Universe) for the story that actually happened in the program; it was well written and compelling.  Eventually, through Twitter we became acquaintances and I learned that she had a very rare and painful disease.  Although she mentioned at times that she was having bad times, she was constantly upbeat and happy.  I don’t even think that I knew until she died yesterday how very serious her disease was.

 

Once, while attempting to explain what it was like to live with chronic pain, she introduced the Spoon Theory to the rest of the group.  That single article, which explained how people with chronic illnesses live, made me think in a way that I have never thought before.  It was one of the single most thought provoking articles I’ve ever read and I’d like to share it with you now.  Please read The Spoon Theory.  I promise you won’t regret it.

 

Liz had a short, tough and yet incredibly brave life.  She suffered from a rare genetic disease that literally affected only 120 people in the entire country of Canada.  It was painful and debilitating and yet, despite all this, she plowed through each day as if it was a gift.  From the late term miscarriage she suffered last year to the pain of day to day living, she was and is, and inspiration to me and the other people she touched.

 

Today, as I mourn a person that I barely knew, I think about how it’s the little things in life that really affect you.  A push here and a shove there send you down trails you never expected to traverse.  Her bravery, her joy, her writing, and her boundless optimism in the face of overwhelming odds have made me put things into perspective. 

 

I just wanted to share her story with you because against all odds, she made a difference and honestly, how many of us can really say that?

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35 Comments

  1. Rene Foran
    March 22, 2011

    I’m am so sorry about the loss of your friend.
    This is a beautiful tribute to Liz and her helpful spirit.
    I am always amazed at the amount of love and generosity that can be found
    in an online community.
    People you hardly know so freely offering kind words and advice.
    They really do make a difference.

    • Lynn
      March 22, 2011

      Thanks…she had a horrific disease but an indomitable spirit. She touched people. How many of us can say that?

    • Lynn
      March 22, 2011

      thanks…yeah, she made me think of things i had never given thought too…like chronic illnesses and pain

  2. Abby
    March 22, 2011

    Hugs…

    • Lynn
      March 22, 2011

      Thanks…did you read that spoon theory link…it was amazing

  3. Casey Freeland
    March 22, 2011

    It’s a beautiful tribute. It’s amazing how people touch us, isn’t it? Really would like to know which television show. Just saying.

    Cheers,

    Casey

    • Lynn
      March 22, 2011

      Battlestar Galactica…there i said it

  4. Pamela D. Hart
    March 22, 2011

    Lynn: I’m sorry for your loss. I can relate to this story on so many levels, but will just send you cyber-hugs (())
    Pamela D. Hart recently posted..Meet Me On Monday 1My Profile

    • Lynn
      March 22, 2011

      thanks…it’s just so amazing that somebody who had SO MANY physical problems and suffered so very much pain could also be so incredibly upbeat. It makes me hate my own whining sometimes…although, not often enough i suppose.

  5. Lady Estrogen
    March 22, 2011

    That’s so sad – and so young :(
    Lovely tribute.

    • Lynn
      March 22, 2011

      thanks…she actually outlived her doctors expectations it seems…it was a brutal illness

  6. Trialia
    March 22, 2011

    I introduced Liz to the Spoon Theory, and I’ve never regretted it. She and I used to joke with each other about morphine side-effects and dealing with people who don’t understand our rare illnesses (she had EB, I have Ehlers-Danlos syndrome. Hers was far rarer and more life-threatening – sadly, that’s obvious now I suppose). She was only three months older than I am.

    I loved her so much. The light that went out of my life when I knew she had died is something I don’t think I will ever get back.

    • Lynn
      March 22, 2011

      Honestly, when Liz put the link up to the Spoon Theory and i read it; it was one of the most compelling explanations i have EVER read…and i’m 51, no youngster. I showed my family and talking about perspective. I barely knew Liz except through her writing and an occasional tweet but her spirit was incredible, especially now that i REALLY know how much she was suffering.

      I’m so sorry for your loss and now i will go research your disease because i don’t know much about it. I’m glad you read and commented. :) You could be my kid…i have two in their 20’s.

      • Trialia
        March 23, 2011

        Oddly enough, you have the same name as my mother and you’re only three years younger than she would have been. (She died several years ago, in a similar way to Liz, from a chest infection during treatment for cancer (NHL, in her case) – she was 46.) Coincidences can be the strangest things, can’t they?

        Liz had such a glorious spirit and attitude to life in general. She always lifted me up when I was down, even when she was depressed herself – both of us had/have bipolar disorder, on top of the physical issues – makes life interesting when you’re trying to balance multiple medications and conditions with each other, believe me!

        She was so good for me, though, and for so many other people. She made me see that even if my life is limited by what I can’t do, that I should still try to do what I *can*, and never give up an inch I don’t have to. I miss her so much. I’ve spent most of this evening reading her old journal entries, just remembering her.

        • Lynn
          March 23, 2011

          I’m sorry…my mom died of lung cancer too and I’m also bipolar. I’m really sorry about your loss of such a good friend. I didn’t know her well and honestly had no idea what an ordeal she was going through. She sounds like such an upbeat, special girl. The world is a lesser place without her.

          I hope you find solace in the fact that she’s no longer in pain. All my best! Lynn

  7. Redshoes51
    March 22, 2011

    Bless her soul… some people are wise beyond their years… and exist beyond their pains. Liz sounds like such a person. You are correct. There is SO much that we can learn from others, regardless of age, if we only open ourselves up to that kind of exposure. Rest in Peace, dear Liz.

    ~shoes~

    • Lynn
      March 22, 2011

      thanks for the comment. She was just so upbeat against all the adversity she had…and the Spoon Theory? Honestly, one of the most interesting articles i’ve ever read.

  8. Carla E. Knight
    March 22, 2011

    I also recently posted about The Spoon Theory. It changed the way I look at my disability and helps me to explain why I do or do not do things in my life. It is truly a profound concept and can be applied to a host of “invisible” diseases and disabilities.

    I’m sorry for Liz’s passing buy I’m glad her life provided understanding for others.

    • Lynn
      March 22, 2011

      I never heard of it until the fall…it was very, very interesting.

  9. Sharon Heg
    March 22, 2011

    I’m so sorry to hear of the loss of your friend, Lynn. It doesn’t matter if you’ve known the person for years or just weeks – a loss is a loss and the bitterness is just intensified when it’s a loss of someone who is way too young. I just went through that with a friend of mine and it’s horrible. I’m glad you were able to have a friendship with her, though – as they say in the show Wicked, “Because I knew you, I have been changed for good.”
    Sharon Heg recently posted..The Birthday QuestionMy Profile

    • Lynn
      March 22, 2011

      that’s funny…on the memorial wall somebody put that song up! thanks for commenting

  10. Jessica
    March 22, 2011

    I’m sorry for the loss of your friend. The spoon theory was a very good way of explaining to people that are not sick what it feels like. It is something that we can relate to and understand.

    • Lynn
      March 22, 2011

      the spoon theory was very interesting…i agree

  11. Dave Pecillo aka ddt73
    March 22, 2011

    Hey Lynn. Very sweet article. It’s so very very true.

    She was a very good person. Didn’t realize her problems till after she was gone.

    She was an amazing person and she’ll be missed.

    • Lynn
      March 22, 2011

      i knew she had health problems but honestly i had no idea how extensive or severe they were…i did find her attitude amazing and honestly, The Spoon Theory explanation was outstanding

  12. Reshma Dave
    March 22, 2011

    I rarely interacted with Liz like many of the fangirls did but I did have the pleasure of meeting her last year at D*C. She never let on how severe her condition was and just traveling to Atlanta was such a huge deal. After learning about her disease I now know that it was so much bigger that what I could imagine. I had no idea she had lost a child and from the sound of it must have been sometime around D*C. She just had this strength about her you know. It’s hard to explain. She was so fun to be around. I don’t ever remember not seeing a smiling Liz. And that’s who I will remember. I wish I had gotten to know better.

    You did a lovely job with this Lynn. It is a great tribute to a friend gone too soon.

    • Lynn
      March 22, 2011

      Thanks…i don’t know if i could call her a friend but i did interact with her occasionally and she seemed to personify grace under pressure to me. I don’t think any of knew how severe her situation was until after she died. She carried a hell of a burden and hopefully, her load has eased. Thanks for commenting!

  13. Pixi
    March 22, 2011

    This is so very heartbreaking & so very touching at the same time. =(
    I’ll be reading that spoon theory. My heart is broken for this young girl & the people who knew & loved her.
    Beautiful post, Lynn. Thank you for being you & honoring this young lady’s memory.

    • Lynn
      March 22, 2011

      Thanks…she definitely impacted me…for the better

  14. Karen
    March 22, 2011

    Thank you for the post and honoring this lady’s memory. Also thanks for posting the link to the Spoon Theory. I am a “Spoonie” as we are called. Although my condition isn’t life threatening, chronic pain is something I life with and probably always will. I was introduced to the Spoon Theory awhile back and it really put my illness in a new perspective for me and gave me a whole new way of communicating my physical limitations to others. The more people that read it, the more we hope people can understand us “spoonies.”

    • Lynn
      March 22, 2011

      I found it so interesting and had never thought of anything in that way. It should be required reading for all!

  15. Lynn
    March 22, 2011

    Very nicely done, Lynn. I had the honor to meet Liz at Dragon*Con last year, and never stopped being amazed at how much and how well she wrote, after I had seen how every day must be a struggle for her. She was always so positive, I often forget what her body looked like, and only remembered her wonderful words.

    • Lynn
      March 22, 2011

      Thanks…I’m so glad that people liked this post and especially that I could help spread The spoon Theory

  16. Kris from Pretty All True
    March 23, 2011

    There is nothing I can say to make this better. I know the depth of a connection forged invisibly, and the difference invisible people have made in my life. I would mourn deeply for many people I have never met if something were to happen to one of them. Sigh.

    I am so pleased she touched you. That she left a mark.

    And I did click through to the Spoon Theory.

    A lovely piece of perspective.

    • Lynn
      March 23, 2011

      Thanks for reading…that perspective was so interesting to me…it’s really made me look at chronic disease differently

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