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    • #13940
      Kathleen Sheffer

      In Memory of Serena Lawrence, Who Inspired Voices of the Hurting and Sick

      On Wednesday night our beloved columnist and editor, Serena Lawrence, passed away. CF News Today columnist @brad-dell has written more about her and the circumstances of her rapid decline in the article linked above. Please read about the remarkable impact she made.

      It was my distinct honor to meet Serena (and photograph her) last month. Serena found me, @brittany-foster, and many other writers for disease websites published by BioNews Services. The vulnerability and humor she employs as a writer continues to inspire us to do the same. We are all mourning the sudden loss of our colleague, role model, and friend.

      Whether you have been reading her column for years, or just discovered it today, I welcome you to use this topic thread to share any words about Serena.

      Even if you did not personally know Serena, any loss in our community can have a profound impact on mental health. Losing other patients can bring up fears of future losses and our mortality. Please be mindful to practice self-care and be kind to yourselves. I am always available via private message if you want to vent. Always happy to listen and normalize your emotions.

      Sending love and light to you and yours,



    • #13948
      Brittany Foster

      I cried for a long time last night. There’s so many thoughts that go through my head with all of this. I have anger at the fact that the underlying condition that she was diagnosed with wasn’t caught sooner. I am angry that such amazing people have been dealt such awful hands. I’m sad for her and her family, sad for myself, sad when I think about “what if this happens to me?” . It brings up fears, tears, and a little bit of everything to be honest. Death is so difficult and I will never have the answers for why these things happen to such incredible people.

      Inside of me I also know that she gave me a voice. She found me and gave me a platform to use my voice for a reason. She used her voice for a reason and it’s amazing to me how many people are sharing about her and it reminds me that each of us has that opportunity to make a mark like that on this world. She used her words for good and they certainly touched more people than she knows.

      I hope what ever is after this life, she is feeling all the love from all of us, the love she felt with her new boyfriend, and that she is breathing the freshest air and listening to all her favorite music and being herself but a pain free self. Maybe her physical presence left us, but I think her impact she had on the community will be a legacy.

      • #14020
        Kathleen Sheffer

        Thank you for sharing, @brittany-foster. I really relate to the complex mix of emotions you describe – how this brings up not only sadness at the loss of our friend, but fear for ourselves and other friends. I’ve felt at a loss for words all month, and finally wrote a column about that feeling. Rereading Serena’s point that death is just part of our journey gave me some solace. Experiencing grief is part of the gift that this disease gives us – witnessing all of life’s ups and downs. It’s so difficult to live with this disease and lose members of our community, but at the same time it gives us appreciation every day. I will do my best to carry on parts of Serena’s spirit, and I’m so grateful for you and others she inspired.

        • #14030
          Brittany Foster

          @kathleen-sheffer , I totally get where you are coming from with everything you said too. I’m glad that we have each other through this as co workers and friends. Writing really has helped me manage my feelings around this and I am not even sure if I could make it into a column as well as you did because my thoughts have just been so all over the place and jumbled. We have had to learn these ups and downs the hard way unfortunately, but it does “bless” us with an appreciation for time itself. She will continue to inspire me and this community.

    • #14035
      Dori Herrick

      Kathleen, Your column says everything I feel when I lose a close friend to one of the diseases I have. I feel blank. I feel guilt. I feel a torrent of emotions which have no name. But, for me, as an older PHighter, I feel it should have been me, not them.
      I didn’t know either Serena or Claire, but I cried for the things they hadn’t lived to experience. I cried for their parents and siblings, for the marriages and families which would not happen, for the hopes and dreams which wouldn’t be discovered.
      I’m 45 and was diagnosed with another slowly terminal illness today. I didn’t cry about that because I have been able to experience life in full, but I did cry today when I read your column. I cry every time a young person dies fighting one of these rare, horrid diseases.
      Sometimes expressing that you don’t know what to say, speaks more eloquently than a Shakespearean play.

      • #14048
        Brittany Foster

        everything you said is so true. It’s one of the reasons why I feel so sad and so full of emotions when someone around my age passes away (I’m 27). I often find myself wondering many of the things that you get sad about when you hear that someone young has passed. I think about if I will be having children one day. I look at my nephew and sister and think to myself, “will i ever be able to watch my child graduate from preschool?” I go to weddings and I can’t help but think, “will I have my own one day?” It’s so hard to think about these things because we just never know how much time we have (as cliche as that sounds). But those with conditions that are life threatening have to think about “time” more. I guess it’s up to all of us to live our life as fully as possible with the time that we have. I know I’m not going to let the fear of dying keep me from wanting to have children and raise them (they will be adopted). I know it won’t stop me from wanting to get married and doing all of the things I dreamed of doing. Thanks for your amazing response to this. It really sums up how I feel too as someone who is around their age.

      • #14063
        Kathleen Sheffer

        I wish I could give you both a big hug! You get me. Serena passing at age 30 represents so many of my fears – that I will leave behind parents who wanted more for me and never experience the milestones I’ve looked forward to. I try to calculate how many more years I need to survive to feel like I lived a full life. But then I look to my younger friends who have passed away and think about how much they changed my life and impacted others just by being kind and funny and spirited. You don’t need to do anything big to live a full life – people remember most how you made them feel.

        Dori, I’m so glad you feel like you have lived a full life. Living with progressive illnesses we have the “advantage” of evaluating our lives again and again, especially when we lose someone in our community. I try to let it refocus me rather than discourage me, but the sheer number of losses last month really added up and made me feel less hopeful, and more tired. Thank you so much for reading my column and giving me positive feedback. I really wanted to be more optimistic, but sometimes you just have to sit with the grief.

        Brittany, I would love to read your jumble of emotions in a column. I thought about making my piece just a list of the tragedies by date because I had no real structure with my emotions. Writing does help with processing!


        • #14074
          Brittany Foster

          @kathleen-sheffer “You don’t need to do anything big to live a full life – people remember most how you made them feel.” – girl you should put that on a quote board with your name next to it. Super powerful words and so true. Thank you for that. I needed to hear that today.

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