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When The Dazzle is Wounded, We All Weep

This morning, just after midnight, we lost a member of our EDS Wisconsin dazzle. If you’re new to reading the blog or unfamiliar with groups of EDS patients, we call ourselves a dazzle, because a group of zebras is called a dazzle and we are called zebras.

Since I got this message on my drive to the office this morning, I haven’t known exactly what to say except that we needed to say something. As the writer of the group, I’m often asked what we should say when something like this happens. I’ve been told since I was a little kid my power over words was impressive, it could help people, it could change things.

The problem is, there aren’t words that make this any better. I cannot write anything in this blog that will take any of the sting away from losing a beautiful young woman at only 30 years old. Nobody wants to admit their selfishness when someone else’s life is gone, but in the moment, the immediate moment I heard she’d passed, all I could think was, “that’s only two years older than me” and I cried to myself in my car as I drove the rest of the way to the office. I cried for her, imagining the pain she had in those final days. I cried more for her family and friends, because at least in my belief system, she is at peace now–something she struggled to find due to the complications. Finally, in the most horrifically selfish admission, I cried for myself. I cried thinking about my absolute terror at the idea something related to having EDS could mean I only get two more years with my husband and my dogs–I cried more later when I read her obituary and about how much she adored her dog, because it was another trait we share. I cried because some days I am just so tired of people I know and love hurting and feeling like nothing I ever do is going to be enough.

I don’t want to write this blog as though she and I are close personal friends. It would be a disservice to her memory. We interacted online as so many do in the EDS community. I remember finding her faith comforting because I share that faith. I remember wondering if I could help and how. I wonder that to myself all the time, usually when I’m feeling like I’m not doing enough, because we lose EDS patients in the world every single day.

I think when you exist in a chronic illness community the way so many of us do, we find a way to connect to people. We feel like they are part of our families no matter how little time we spend with them, because in some cases, their DNA is more similar than the people we are actually related to us. They share our experiences. They share our struggles. They understand our emotional and physical pain and sometimes, they are the best sounding board for us. So, when we lose a member of our chronic illness family, we grieve them, because grief is human and we might be chronically ill, but we are human.

There aren’t words to adequately express grief. Grief is too complicated to be put in to words, but pretending we don’t feel grief is not healthy. Pretending losing a young, beautiful woman with EDS doesn’t also terrify us is not healthy. Accepting the truth about this grieving process means we don’t delay too long what is truly important–fighting for the people we have lost–and I believe at the end of the day, every single EDS patient we’ve lost would want that from us. They would want us to brainstorm ways to help their doctors be more informed. They would want us to get together and remember fond memories about them while also discussing how to teach patients who share their condition to advocate for themselves because in their passing we found a passion for even more advocacy. They would want to help patients with their passing, I truly believe that.

I hate the saying “she lost her fight with [fill in the blank disease]” because it is absolute nonsense. No human being has ever lost a battle against a disease. Instead, they found peace from it. Whether it’s EDS, Cancer, Parkinson’s, or any other condition, I refuse to ever treat another human being as having been too weak to win. Living with these conditions for any length of time is victory. Impacting the world is victory. When peace comes to our victorious friends, we will take the torch and we will keep fighting, because we will never let someone pass in vain. We will continue our work and we will continue our fight and we will remember that we cannot lose, either.

And then we will cry, because we lost a member of our family today and it’s normal to cry when you lose someone in your family.

Thank you for reading my words while you were here, Lisa. Thank you for loving dogs like I do. Thank you for fighting this battle alongside me. Thank you for allowing us to continue your fight. We will not stop. I’ll give my dogs an extra squeeze for you tonight. You won.

Lisa and l shared a deep love for our dogs. Here is my littlest baby, who has gotten lots of love since we lost our zebra friend.
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8 Comments

  1. Micheal Northern / February 25, 2019

    Very elegantly said.

  2. Kassady Oberacker / February 26, 2019

    Thank you for such beautiful and thoughtful words about my dear friend. I still do not want to believe it’s real…

    • Stephanie Vander Pas / February 26, 2019

      I am so very sorry for your loss. None of us want to believe it’s real. Please know the team here is truly committed to preserving her memory through our work and grieves her loss with you.

  3. Amy J Hebzynski / March 6, 2019

    Thank you all, I am one of Lisa’s biological sisters and all of these words bring me to tears. I love her sooo much it’s hard to be without her in this world but I know she is finally at peace. I can tell you that in her final four days she was able to be at home with her family and we had some great moments together. She was very brave in knowing what was to come and have strength to put on a smile and make us laugh. I don’t know how she managed to have a smile so often and yet hide so much pain. We were able to stave off all dystonia except 3 small episodes in her final days and she seemed to be pain free until her final breath when she had two tears roll down her cheek. We believe she had seen something great and was finally at peace.

  4. Amy J Hebzynski / March 6, 2019

    Thank you all for your kind words. I am one of Lisa’s biological sisters. Reading this brought me to tears once again but it’s because she was such a bright beautiful young woman and had touched so many lives in her short existence. She was able to spend her last 4 days at home surrounded by family instead of a hospital bed which is the way she wanted. She didn’t want to die in a sterile place. I don’t know how she did it but she covered her pain and tried to make us laugh on more than one occasion but that was part of her gift, she knew how to cover her pain and try to help others always. I think that hospice finally gave her the pain medication to give her relief so she wouldn’t have to suffer in her final days on this earth. I do know that she is in a peaceful place without pain and suffering and no longer being told there is nothing they can do for her. I miss her beyond words but her spirit will live on forever!

    • EDSWisconsin / March 6, 2019

      Hi Amy. Lisa has taught all of us so much. Thank you for coming here and reading this. You and your family are welcome to take part in and/or speak at our events. I would highly recommend Meagan’s HOPE Memorial Walk for EDS Awareness and Suicide Prevention. Lisa always wanted to participate in this more than she was physically able to. Together we are stronger. 💜

  5. Amy J Hebzynski / March 6, 2019

    Where is that being held? I would love to come and I’m sure my family would as well.

    • EDSWisconsin / March 6, 2019

      The Walk will be in Wausau. We would love to speak about Lisa and honor her. Here is a link to more information. Your mom has my phone number and she can contact me, Tammy, anytime for more info or to collaborate on how we want to honor Lisa. You can also email me at edswisconsin@gmail.com

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