Thursday, June 16, 2016

Today, at Duke


I'm dying.  That's confirmed.  That's the bottom line for today's post.

Here's the longer version of this story.

I was at Duke University Medical Center today.  I've been getting brain tumor treatment at Duke for going on seven years.

These people at Duke are amazing, warm, caring, and very good at their jobs.  I love them all.

I went to Duke today to have an MRI and to talk with the team about what the MRI results mean for me.  I've assumed for the past few weeks that the news would not be good.

What's happened, so very dramatically, in the past few weeks?
  • My speech is getting worse.  I say the wrong words pretty frequently.
  • I have a hard time reading or typing anything on a computer screen.  Thank god for voice recognition software.
  • Using my right hand has become increasingly difficult.
  • My sense of balance is really bad.  I fall down very easily at some times during the day, and those times are difficult to predict.

These changes have been such a surprise.  I've never before experienced changes this quickly, as a result of the tumor.  My body is so very different than it was just a month ago.

As I've written before, I have already been told that I likely only have months to live.

After a day of driving, MRI scanning, waiting, and talking, here's what I learned that's new:
  • My brain tumor is much bigger. The tumor is now in places it's never been before.  And, not surprisingly, my brain is swelling from all the tumor growth.  
  • All of my symptoms are fully explained by the changes in the tumor.  

Over the past seven years, I have had two brain surgeries, a once-in-a-lifetime radiation treatment, every chemotherapy drug worth trying, and tumor-treating electrical fields.  I'm not a candidate for any clinical trials.

There are no treatment options left.  There's no reason to stay with the treatments I am now on, as they haven't been effective.

So, what comes next?

In a matter of months, I am going to die.  In three months to a year, I will be gone.

These words are hard to write, because I want to live.  I am sad -- sick to my stomach -- about my imminent death.  I've cried today.  I will cry tomorrow.  I can't imagine a day without tears any time soon.

I want to live for my daughter, my family, my husband, my friends.  I want to teach, to write, to try new things.

Most of all, I want to see my daughter grow up.

We can't know how long I will live, exactly, or how long I will be able to walk, talk, and write.

I will have more time to think this through over the coming weeks.  This is what I know:

I will have no more appointments at Duke.  These amazing, kind people can't do anything more for me.

I will spend my remaining time with the people I love.

It is about time for Maybelle to learn how to ride a real bicycle.  I'd like to see that happen this summer.

From now on, I am eating anything I damned well please.

I am extremely pleased that I am no longer going to have to wear electrodes, shave my head, and wear a backpack full of medical gear.  The Optune people are pleasant, but I am totally over having four electrical wires trailing behind me all the time.

I am so grateful for the people who have loved me, cared for me, fed me, send me messages of hope and support.


P.S. Brian helped me with this post.  Because I can no longer write anything this long without editorial assistance.  Which is really irritating, on top of everything else.

143 comments:

  1. I hope these next precious months are filled with beauty and love, and you enjoy them mightily.

    Virginia

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    1. I love you and you will always be with me. From Rosemarie

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  2. You are so loved by so many...your courage is amazing...

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  3. May the coming days be full of love, lots of laughter, joyful moments, the best of all your favorite treats, beautiful music, stunning views, and as much courage, grace, and generosity of spirit as you have shown everyone who's come to love you here and those of us wove had the pleasure to know you in person. My love goes out to you.
    Danielle

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    1. Ands of course, I wish for you to see Maybelle's beautiful smile and hear her giggle as she rides off on a big girl bike!❤

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  4. Your courage and love for your daughter and family are inspiring and heart-breaking. Thank you for this unique insight. ♥

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  5. I am a former student of yours, ashamed that I have not reached out before now. I just wanted you to know what an inspiration your strength, vulnerability, and courage are and have been, even to those you may not have been aware were influenced by you. I wish you the very best in the coming days. You will be remembered.
    M

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  6. Dear Alison,

    I have been traveling for most of the past month. So, though I've been keeping up with your life via this blog, I've not appeared in the comments. I have been thinking about you, and have been both dreading and expecting a post like this. Now, here it is. Here you are.

    I admire your clear-eyed approach to your mortality, your frankness in discussing the unbelievably shitty hand you've been dealt. I know we often say of people facing death that they're courageous. I think we -- healthy people whose death is (as far as we know) at a greater distance from us -- say this because death is scary. Facing it requires courage. And, for the record, you are facing death with courage.

    But "courage," though true, risks obscuring all the rest of it — which you've talked about here on the blog and in the Charleston City Paper. The sadness. The hope. The fear. The joy. For someone reading this comment out of context, "joy" probably seems a strange, even jarring, word choice. But joy has been here, too — in your stories of Maybelle, of your wedding to (and honeymoon with!) Brian.

    Your words have taken us through the whole gamut. I remember once reading that the word "gamut" is a combination of "gamma" and "ut," which (taken together) names the lowest note on the medieval scale. It's a resonant word right now. Reading your post feels like the lowest note — like the bottom just dropped out of the scale, actually. But “gamut” also came to mean the full scale of musical notes, and ultimately the sense in which we most often use it today: “The full range or scope of something.” And that’s also where we are: the full range or scope of your life, your knowledge, your experience. The gamut.

    I feel here like I am trying to weave air into truth, knit meaning out of fog. Because the truth is, Alison, I don’t know what to say.

    I know that your time is short, and I don’t want to waste it by rambling. I know that I need to say something sooner rather than later. I know that I need to say something now. I know that what I am writing may be the last thing I say to you because I don’t know how short your time is. And neither do you.

    I want you to live. I know you will not.

    I don’t want to write about you in the past tense. I don’t want to write a eulogy. But I do want you to know that you made a difference. You mattered. Your being here on this planet with the rest of us has mattered.

    I have written about you in the past tense. And now I both want to apologize and to avoid apologizing. I want to apologize because you are still here, but I also doubt my apology because, well, the apology is not entirely about you. That is, I am sorry to speak of you in the past tense because it’s wrong (you’re here!), but I’m also sorry because I know that past tense will arrive too soon (I’m sad!).

    When did we last see each other? I think it was at ASA — American Studies Association — a few years ago. Washington, DC, November 2013. (Confession: I have just Googled to find the city and the month.) I remember standing in the hotel, near the glass doors of its entryway, and talking briefly about your book. I remember, too, that you seemed tentative. I remember that because you have always struck me as the opposite of tentative. Right back from when we were graduate students, you were always direct, passionate, serious, strong — but also ready to laugh. Never tentative, though. Or, at least, I didn’t see that side of you.

    I don’t know how to end this. I could reflect on tentativeness as an apt metaphor for life, but I prefer to think of a brief email exchange from last month. You asked me, "Am I allowed to offer xo when I end an email?” I said: “Sure. We've known each other for about 20 years!” And I signed it XO.

    So. XO, Alison. XO.

    Love,


    Phil

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    1. Phil, I love you so much. What you've said has helped. (And my mom, too!) I'm going to write you soon, but right now I just want to say 'thank you'. xo and Love.

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    2. Thanks, Alison. Love you, too. Also, bonus! The above was not the last thing I wrote to you. I don't think this will be the last thing either. In that spirit of optimism, here's another silly joke (which I hope I have not used on your blog before...). Ready? OK....

      Q: How many optimists does it take to change a light bulb?

      A: Who says it's dark?

      Thank you. Thankyouverymuch. You've been a wonderful audience.

      XO XO

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    3. Philip, you rambled on behalf of all of us. I thank you. It was beautifully written!

      Alison....XO (Even though I may be merely one of your many admirers) you've touched my heart deeply; and there you will stay!
      Holly Annibale

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    4. Alison: XO XO XO.
      Holly: Thank you for saying so!

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  7. You've done so much for so many, Alison. I wish better for you. Peace, prana, and love to you.

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  8. Jennifer Dotson-CreterJune 16, 2016 at 10:46 PM

    Love, warmth, and many hugs to you and your beautiful family

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  9. All I can say is I love you. I loved you from the moment you entered my life; you have showed how it was cool to be provactive and question the norms. I wish I could begin to let how much I appreciate what you gave me as a student and continue to share wih me years later. Life's not fair; and I will continue to wish for a miracle. Because why not?

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  10. I've been following your journey from here in Charleston. Sending you lots of love and comfort. I hope she gets that bike going!! And congrats on your recent nuptuals!

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  11. love to you. so grateful for everything you

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  12. I've been following the story, Alison, but not commenting much, because I don't know much what to say. But I've known you over half my life now, and I'm the richer for it. If it weren't for your comment when we were 18 that you liked the name 'Judson,' I'd probably still be going by 'Jud.' So, you know, you're life-changing. :) I love you. We love you. You are loved, and you are love. I'm sorry your story here is ending, but the ripples of your story go on and on and on. From this perspective, you handle it all with such grace. Thank you for sharing yourself with us.

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  13. Thanks for letting us know, because we love you and we want you to have every single day and hour that you can. Because you deserve so many more. Sorry, so sorry. Eat whatever you damn well please. Let me know if you'd like some shepherd's pie or any other kind of pie.

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  14. I'm so glad I've gotten to know you through your writing and through your blog and I only wish I could've hung out with you in person when I was living in SC. You are an inspiration to me and I am so sorry this shitty, shitty thing is happening to you.

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  15. Having recently lost my only child suddenly and unexpectedly, your post hit me in the heart. You seem so brave and objective and I don't see any signs of the fury and anger I felt. I admire your attitude but I hope you are able to let some anger out too. It is not fair. Bless you♡♡

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  16. Alison, You're here! I cherish being in a world where you ARE.

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  17. I love you Alison. Sending love, light and hope to you and your family from Germany.

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  18. Alison, your courage and openness are breath-taking. Literally. I found my way to your blog via a friend, a former student of yours, when I found out I was carrying a daughter with Trisomy 21 more than two years ago. (And as a fellow academic, I think it speaks volumes that so many of your former students continue to hold you in the place of esteem and admiration that they do.) Although I've never commented before, it has been such a privilege to 'know' you and your family through this blog, and to feel the tenuous connection I feel with you as a fellow feminist, academic, mother of a daughter with Tirsomy 21. I have valued your writing and you have influenced the way I think about my own experiences with disability and my scholarship. Selfishly, and for the world, I want you to write and think and educate more. I wish I could meet with you and talk with you.

    I am wishing you and Maybelle and all your family great peace and joy in the coming months, amidst the sadness. And thank you for continuing to come here.

    With gratitude,
    Sadie

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  19. Allison you are by far one of the bravest people I know. You are in my thoughts and prayers and anything at all I can do please let me know.

    Love and prayers,
    Denise Farmer

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    1. Thank you so much, Denise! My mom loves you, too!

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  20. I love you so much. I'm so goddamn heartbroken right now. I hope the next... months(?!) - I hate writing that - are filled with love and peace. We are here with you.

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  21. Alison, you made a huge difference in my academic career at College of Charleston. Especially at a time were I had low self confidence, and you came to me and told me how well I was doing. It meant the world to me, and I kept pushing because of you. I think about you all the time. I love you!
    Katelyn Clow

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  22. Dear Alison, you are a gift to the world. Thank you for everything you've shared. We're thinking of you here in NYC. xxxx Ayun

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  23. Alison, you are truly incredible. Thank you for sharing these writings. I pray your next months are only filled with greatness. Thank you for everything. You are always in my prayers. Sending love from DC.

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  24. Dear Professor Piepmeier,

    I am truly sad to read this. You are a beautiful human being and deserve to see your daughter grow up. I am a former student and words cannot describe the level of gratitude I owe to you.

    In my first year of College of Charleston, first time away from home, you opened my eyes to the world of feminist critique and feminist thought. Through your passion for women's rights, I saw the world from a different viewpoint and started to understand systematic oppression, feminism, and importance of fighting for equality and equity for all.

    Although, we lost touch, I kept your lessons in the back of my mind, and later went to pursue a career in International Human Rights Law where I've been working to empower vulnerable populations through legal services. I continue to keep the lessons you taught us in class while I am work in human rights law. In short, thank you for everything. You changed countless peoples' lives including mine. Many people live through this life without making a change, but you have changed countless lives through your presence, and that is something to be truly proud about in this life. Thank you again.
    Best,
    Pious

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  25. Alison, dear heart, my mama heart breaks for you, my fairness heart breaks for you, my writer heart breaks for you, my feminist heart breaks for you, my friend heart, my human heart, they all break for you.

    Thank you for being you. Your big warm smile is the first thing I think about when I picture you. I will always remember you laughing at the NDSC conference, rolling with the punches while Maybelle jumped with her friends on the bed.

    Wrap yourself in the love of the people around you, friend. Eat whatever you want. Tilt your head up at the sun. Wrap your arms around your daughter and your husband and your family and your friends. These are the things that matter as you know. Know that Maybelle will be loved by your immediate friends and family, and those of us afar, always. She will do great things, and it will be because of the foundations you've built. You are an amazing mama.

    Lifting you up in love and light.

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    1. You made a difference in my life, too.

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  26. Alison,

    I know I haven't kept touch over the years like I should have done, but this breaks my heart to hear. You've always been such a wonderful person. There are no possible words I can use to offer the kind of meaningful comfort I wish I could. Peace and love to you, my friend. I wish you all the best.

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  27. You are in my thoughts. May your remaining days be filled with love and may you and your family find peace.

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  28. Nothing about this is fair and I hate it for/with you. I was honored to come and present with you at NWSA in Denver, and it was a gift to meet you.

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  29. I was crying, then I came upon the line "from now on, I am eating anything I damned well please" and I started laughing! Yes, have a donut with every meal, dammit!

    Alison, I am so grateful for the time you spent writing and blogging about feminism, parenthood, and now, cancer. You have made an indelible impact on me, a thousand miles away and in what some refer to as the opposite of "in real life." You and your family are in my thoughts and in my heart.

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  30. Alison,

    I don't have any actual sisters so as much as I ever had a sister growing up, it was you. Or as much as I have a sister to this day, I guess.

    The best positive thing I can say right now is that it's your fault I'm a feminist. You taught through words and you taught by example and I know I'm not the only person out there who can make the claim that my understanding of how to better interact and integrate with humanity as a whole was radically influenced by your passion.

    I'm so sad for you and your family. This is just fucked up and it shouldn't be like this - not for you, not for anyone ... but especially not for you.

    I love you and I wish so much that you didn't have to go.

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  31. Alison,
    When I first started in the grad program at Vanderbilt, I was pretty lost. I struggled with the classes, and could not seem to find a cohort of friends. That first year, I somehow got invited to a Christmas party at your house. And from then on, you were my friend. Your kindness and openness, your fierceness and warmth were an inspiration for what a woman in academia could be. You probably don't even remember much of this, as we never stayed in touch, but those small gestures of friendship made a huge difference in my life. I am heartbroken to read of what is to come, but know that, as it is the way with you, you embrace each day with an open heart, and each person whose life you touch will always be the better for it. You and your family are in my thoughts. -Melissa Hull Geil

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  32. Oh, Alison, I am so incredibly sorry! As you know all to well, this is so fucking unfair! You are such an amazing person, who has been an inspiration to me, and so many. I hope all of these messages let you know that your work will continue through all of us, and Maybelle will be surrounded by love and people who will always remind her of how lucky she was to have you as a mother. I wish you all the cinnamon rolls, bike rides with Maybelle, and goodness and love you can handle! Please let me kow if there is anything I can do.

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  33. Alison,
    I do not know you, but I count Melissa Morrow as one of my dearest friends. She loves you, so I know you must be nothing short of amazing.

    My heart breaks for you. I cannot even fathom the pain you are going through in having to say goodbye when you absolutely should not have to because you are so young and have so much left to do...but I wanted to share something with you with regard to your daughter.

    I grew up in hospitals with my Mom. She did not have cancer, but she was ill my whole life and had over 60 major surgeries throughout her 62 years of life. I lost her in February 2015 to pneumonia, of all things. I had my mom for 40 years of my life, but when she died I felt like a little girl again and wanted my Mom. Your daughter will hurt. She will miss you terribly. She will always feel like part of her heart is missing.

    But...

    She will be stronger for having to go through this time and the time to come. She will be able to use this horrible experience to help others. She will learn so much about herself because of it...things she could not learn otherwise. She will be able to support loved ones going through the unthinkable because she has already been there - she can help guide them or just lend them an understanding ear or shoulder. Her life would unquestionably be better with you physically in it, but please know you have already left an indelible mark on her soul and given her the strength to get through this.

    And, while I do not know your personal beliefs about the afterlife, I personally believe you will always be right there beside her - holding her hand, whispering in her ear, meeting with her in her dreams at night while she tells you all about her adventures, and you will be able to marvel at the incredible, strong woman that you have added to this world.

    My love and prayers for peace for you and all your family are with you.

    Colette

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  34. Oh Alison, I read your update with a heavy heart this morning. I have been following your blog for years now (since before the name change), but I comment very infrequently. I have a daughter with Down syndrome a little older than Maybelle. Your words and insights have shaped my world view in the very best of ways. I am a better feminist, which totally pisses my father and brothers off, a better mother to my two daughters, and a better advocate for disability rights. I recently pissed off a woman who runs a very lovely foundation in my town because a video she had made to drum up funds was a little to heavy on the grief narrative. She hates me, but I feel good about setting that boundary. I will proudly continue to piss people off on your behalf long after you are gone. You are in my head and in my heart and for that I will always be grateful. Someday, I hope another scholar will pick up your research and finish your book. I will look forward to meeting you again in its pages. Much love to you and your family.

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  35. Dear Alison--

    I haven't talked to you in many years, and am not sure you will remember me--but I remember you and am so grateful for you. You were my professor at Vanderbilt and your class, Images of Women, was the first one that exposed me to oppression and injustice I'd been feeling and noticing my whole life and introduced me to the vocabulary to name it. I took your Gender and Violence seminar my junior year and it gave me an opportunity to talk to my own family about our own history of violence. When I applied for MFA programs, you saved me by being a strong last minute recommendation when the first prof I asked flaked. I got in. I'm a poet with books now, something that might not have happened without your help. In every interaction we had, I always felt seen and heard by you. I was and am still so inspired by your intellect and passion. I am so grateful to you. I have been meaning to contact you for a long while and am sorry I am only now doing so. I am sending you all my love. Thank you for being such an important part of my life and my learning in general but especially at such formative moments of my life. I have been following your blog for forever, but haven't really commented, just been grateful to "know" what is going on in your life. Thank you sharing this news with us. Thank you for your honesty and bravery and kindness and wit and love. Thank you, always. Thank you, forever. Love, Michelle Penaloza

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  36. Alison,
    I don't know what is more amazing and heart-breaking, your powerful words or the powerful words they evoke from others. You are the change this world needs, and the difference you make is clear in every post here, and the love and innumerable actions you inspire.
    Mark

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  37. Oh dear Alison. You are so very loved. I ache for your sadness, especially as a parent. I so want you to see Maybelle ride that bike!

    This all feels so unfair. I want it to be fair for you. I so wish I could make it fair for you. All this and I realize that nobody ever said life was fair. Damn it!!

    I so appreciate what you share with the world, Alison. Here's to summer bike rides.

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  38. I was a journalism student at Tech. I only met you once when I was doing an article on the literary magazine, and I never told you, but it was a total fangirl moment for me. I had never encountered a writer who wrote with such authenticity and honesty. When I write poetry now, honesty is always the thing I strive for the most, and it makes for very good writing.

    I have a couple of Tech literary journals in my keepsake box, and I always pause when I am doing my annual spring cleaning purge. I flip to the dog-eared pages with your few poems and it just hits me again. I don't think I can ever let them go.

    I just wanted to let you know how much I admire you, and how much you've touched my life even without trying.

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  39. Alison, my mom said this post would make me cry. And she was right. We have never really been "friends", but I have always remembered you when taking trips down memory lane and since my mother has kept me updated about the happenings in TN, you have been on my mind quite a bit more. I always secretly admired your outspoken nature and your amazing brain, though it probably doesn't feel too amazing right now. Even more so now I admire your strength and courage and feel quite small when I grouse about the piddly day to day...garbage...because that's what it really ends up being at the end of the day. You truly make me want to be a Bigger person. A Better person. I hope I'm more like you when I grow up and I hope everyone who has found strength and comfort in your words truly lives life to the fullest, ignoring that old tune "Life sucks and then you die." Life doesn't suck. It's the dying part that does. Life is what we make it, regardless of our pitfalls. You have made a wonderful life, despite what is happening to you, and that is a beautiful thing.

    I wish you and yours Love, Happiness, and Peace.

    -Autumn Vena

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  40. Alison, I want to say everything about what a force of light you are, but Phil Nel said it all so beautifully above. What he said. I feel that about you. I feel like all of us are lucky that we move in the same parts of the world as you, even when it is just brief overlapping. Concentric circles becoming huge waves. You are inextricably linked with feminism in my mind, with the refusal to give up fun in a world that likes to take itself too seriously, with Princess Leia. These are all core loves for me that you have become part of. You are more important to all of us than you could know.

    I want you to see Maybelle take that first ride on her bike, your beautiful child moving freely in the beautiful world you gave her. And you will keep moving, too, and we will feel your beauty. Love and dearest wishes--Amanda Kinard

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  41. So the awful saying is true, only the good die young. You are too young, too beautiful, too intelligent, too brave, and too compassionate to have to suffer this. I wish, I wish, I wish. As I know you do as well.

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  42. You are in my heart, always. You are surrounded by love, always. Maybelle lives in all of our hearts. She is surrounded by love, always. I am devastated for you and for all of us. Love to you, love and nothing but love. Always.

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  43. Sending love to you. Sending love to Maybelle.

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  44. We have not met, Alison, but I have followed your story in the City Paper and have come to deeply admire your courage and clarity. My family and I have recently moved back to Charleston. Know that we are at the ready to help you, sweet Maybelle and Brian in any way that we can, today and tomorrow.

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  45. Peace and love to you from one who has followed your incredible story of strength and love but never commented. I am so sorry.

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  46. Much, much love to you and your family.

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  47. Oh Alison!!! My heart is breaking with hearing your news! Your love and enthusiasm will be with all of us so blessed to have been touched by you. Maybelle will be a shining example of all that you are! ❤️❤️❤️❤️❤️ Hugs!!! Holly Annibale

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  48. Alison, Alison, I have met you exactly once - at an ASA meeting where you presented on neonatal testing and Downs. Your work was an inspiration then, and you are an inspiration now. With my deepest thanks for both, and wishes of laugher and love now and all your days. Micki

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  49. Alison,

    This was not the blog I had hoped to read. I know you have tried everything in your long brave journey to overcome this damn brain tumor. As a mom I understand how difficult is the thought to leave this world before your daughter is grown. You have inspired so many in so many ways. Please know we are all pulling for you. And that you find in each day remaining all the love, light and laughter you can. That is a wish for us all--to live each day to the fullest. Love to you and yours.

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  50. HI Alison--I've been following your story for a while now, lurking through secondhand posts by a mutual friend--you were a TA in a Women's Studies course I took as an undergraduate at Vanderbilt many, many years ago, and I always remembered your earnestness and enthusiasm. I have been rooting for you in the shadows, rejoicing in the triumphs, hoping for a happy outcome. Thank you for all you do and have done--I wish you happy, love-filled days ahead. Best, Kristina

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  51. Alison, I am so sad and so angry for you and for all those in this big community of people who love and admire you. Like so many others, I feel lucky to know you and feel the force of your courage and strength and wit and perhaps most of all the generosity that trails behind you wherever you go, carrying all of us along with you. Several of your apparently stray remarks to me have deeply affected the way that I think about my life and my role as a teacher. Thank you for all of that! And love to you and your family.

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  52. Alison, we haven't run into each other on campus in years, but I've been following you and chiming in here and there, even before the C monster really took over. You've taught me to find my voice, use it for myself and others, and to be unapologetic about it. How to be who I am and expect people to deal with it. How to be a better feminist. And how to be more open and honest about my own chronic, life-altering at times health condition. How to accept myself in light of having one and living life large anyway. Grace and bravery. I will miss you. Greatly.

    I wish you peace. Love. Eat all the things. Drink all the things. Live the hell out of the days you have in front of you. Love the hell out of M and B.

    Thank you for being you and for being so open about -- everything.

    XO.

    Regan Fantry

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  53. Lelia sent this to my inbox last week and now that I'm reading it, I am in tears. I couldn't tell who the author of the blog was within the first two sentences but once I read the word "Brian", I knew and I heard my mind scream "NO! This cannot be Allison!! NO!!" For both our sakes, I will keep this short, but not because there I don't have a mountain of words to say, but because I almost don't feel that I have the right to say them after all of these years. What I will say is thank you. Thank you for your spirit of optimism and love in Dr. Kratz's experimental class on race-relations. Thank you for being a light in my life (both during Tech and in the years after). You've impacted me in ways you'll never ever ever know and (gee, it's hard to type and cry- the keys are blurry) in ways that I shall never ever forget. You are beautiful, so beautiful. My memories of you will always be fond, gentle, full of intelligence and wrapped in grace. Odd, I've missed you and the crew off and on over the years and now, sadly, I'll miss you forever. :( I'll pass on this link to Parrish. I've lost touch with Mike. Believe it or not, I'm still working hard with race relations even today. Our little focus group gave me hope for humanity and you, Allison, were..ARE.. a part of that hope. My words fall short of the emotion I'm feeling but I hope this lands with the authenticy in which it was written. I wish for better days ahead of you, regardless. Charlette

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  54. Alison, you were among the first people I met in Charleston, at faculty orientation, and I always wished I had a chance to know you better. Your energy, your deep thinking, your parenting, your efforts to contribute forcefully and creatively to change, your willingness to lead, to educate, to defend, to say what needed to be said--I have admired these, from a distance, and I know I'm not the only one. I hope that knowing the ways you are and will continue to be celebrated can bring you some measure of peace.

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  55. I love you, Alison. I consider myself blessed to have encountered you.
    I will always remember you dancing with your shoes off, while my 80's band sang 'blister in the sun.' You beautiful woman.

    Let's meet up on the other side and have a long catch up session!

    -Tammy Fowler
    Nashville

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  56. Alison,
    I have linked to your writing often over the years through my friend Mel Goldsipe's FB posts.
    Your writing and heart are beautiful. Thank you for publicly sharing your truth.
    I believe you have touched many more people than you will ever know.
    Wishing you peace, as much joy as possible and love over the coming months.
    Many kind regards,
    Beth Maree
    another Cookeville alum

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  57. Allison. My name is Paula Byers. We have mutual friends. First. You situation simple sucks! Second. I have a brother with Down syndrome. He has lived with me since out mother died. He is a bagger at Publix on James island. Please know we are available to do anything to help with maybelle. Ed rides a bike. Maybe be can help. We are good baby sitters. Brian. My cell is 853-991-4174. Please call no matter now big or small
    All our love and hugs paula

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  58. Wishing so much that you will see Maybelle fly along on a bike! So glad you have such loving support around you .
    Sending love light and courage in abundance x
    Jane London UK

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  59. So sorry. Even though I knew this post was inevitable, it doesn't make is suck any less.

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  60. I am truly appreciative of you giving me an opportunity to bring a meal to you recently. If I can do this again or anything else, I am just around the corner and willing to assist. There are no words that suffice in these situations but please know the world is a better place because of you. This is not meant as some weak platitude. Instead, it is an observation from someone who is standing on the outside looking in that wants you to know your many contributions to the church, to the community, to your friends and family are very real and very meaningful and very noticed. - Mark Madden

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  61. Dear Alison,

    THIS is what we all love about you. Your directness, your lack of bullshit. No mincing of words. What a gift. What a lesson, an inspiration, for me.

    So, you are dying. And, you are living. Both at the same time. I know you will sink deeply into both, and into the mystery of the whole experience. I have loved following you since you left, on your blog, keeping at least some sense of connection to your life and your passion.

    Pictures are going through my head now. Sitting at Starbucks on a Tuesday night, just 4 or 5 of us, debriefing on our crazy lives. Upside-down sweeping the cobwebs off your ceiling at Lichey Street; a trash bag of clothes I was going to take to Goodwill, and a particular blue tank and matching sweater I had bought in Italy, that you took to wear for a speech at an upcoming conference. Going to the hospital when your first brain tumor was diagnosed, during your holiday trip home that Christmas, and the relief I felt in just seeing you. Reading about Maybelle, and the deepening of your life and roots there in Charleston....

    Your life matters, Alison. And I LOVE reading everyone's comments, just seeing how wide your circle is, how many people love you so fiercely, those wonderful friends showing up for you and Maybelle and Brian every day, and especially those who are taking the opportunity to let you know how some class, some moment, some conference, something you contributed to the world, changed their lives.

    There is no making sense of this. There's just living, living, living....all of it, till the end. I am taking away so much from the grace, generosity and raw honesty you've allowed us to witness. I will hold you always as a bright light, and I want you to know that my life is enriched from knowing you.

    Here's to Maybelle's first bike ride, a glorious summer, and eating WHATEVER the hell you want! And, here's to the return of Alison's hair!

    Love, always always always.....
    Kathy in Nashville

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    2. I'm sorry it's taken me so long to respond to this. I love you!
      xo

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  62. Dear Alison,
    We were going to grab a coffee recently and I wondered and worried about you when I never received your last follow up. I am so relieved I am finding you now. I've missed your face greatly and have been so looking forward to being in your presence for coffee.
    I am crying and feeling sad as I write, yet I am also so joyous just to get to make the connection now in any form. I feel honored to read your words and to reach out... just to find you feel connected.

    I want to help create whatever you want for this time... would you let me do that? Any way I can be there and offer you what you want... whether it's to help with Maybelle, bring you great food, help you write your words, do things that need tending to, or just be present with you and listen or share.
    I am strong as a mental health therapist for complex ptsd and suicidality with great influence by you and how you've mentored me I'm the past. I still hear your words come through me at times when helping others. Your impact is great and it domino effects and is endless.
    I just want you to have as much of the kind of support you want at this time.
    I am heartbroken that you are dying and I feel like the world will never be able to honor how much your presence & efforts matter... and at that I feel anger- cuz you are a phenomenal woman and I feel like the world can't effectively reflect back how deeply you matter and how important you are. You deserve everything and more.
    I am in despair that there is so much of life you still want to live and I wish so deeply you could have that and so much more as you deserve.
    I want for you to tell me how I can be there for you. I am not sure if you will be back in Charleston, but I am hoping to run to the store for you or whatever you need. Otherwise, how can I support at a distance? I tried to call you just now and it looks like I don't have you number anymore, which I felt sad to discover.
    I feel myself avoiding ending my message cuz I want to be connected with you~ I want more than anything for you to have the connection and time you want while you are dying. I feel you and your incredible life force as I read your words and I love you and admire you greatly. Please tell me what you need/want if my support in any way could be helpful to you. Xoxoxo xo
    So much love.
    843-224-7638
    Www.dbtcharleston.com

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    1. Lastly, I think we often invalidate people who are dying or facing terminal illness because our society deals with it through denial. I also don't want to waste your time by too lengthy of a message... and I ask what support you need so my presence, activity or even space in your life is truly medicinal for you at this time. Any way I can help you... I would be honored~ and of course I'd love to be in touch with you, yet I really want to support you in whatever love connections you need the most to satisfy your needs for this time. I know so many people love and want to see you- your time should be exactly what your heart yearns for at the deepest level... I just want you to know I am here to support you in making that happen in any way I can offer support. Okay, Love, so much incredible love to you~ You will be in my devotions & meditations. Xo

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  63. Alison, My name is Sonalini. We've never formally met, but I did my Ph.D. at Vandy from 2004-2009 (POSC and GWS) and heard great things about you from many folks in the Vandy GWS community (Rory, Laura, Monica, Lyndi, etc). I've followed your blog and work over the years, and have loved reading your thoughts and insights. Reading your latest post broke my heart. There are really no words, but I'm sending you and your family much love and light. xoxo.

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  64. Alison, I moved to Meridian St., and I can't remember what street you used to live on, but I know it was close to here (Lischey?). I think of you as I pass what was Cantrell's bbq (the pink pig is still there). I've read and observed your journey from afar hoping you would beat the odds and grow old watching your Maybelle. I'm so sorry you won't. I'm very grateful to have taken one of your classes and to have chewed the scholarly fat with you. I'm grateful that your voice has been heard and inspired so many. I'm sending you love, and wishing you a beautiful final chapter. Patricia (Conway)

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  65. Alison, you were one of the first professor's I had at CofC. I have so many fond memories of that class. I remember us once joking about making a Women and Gender studies class all about Buffy the Vampire Slayer, but I think both of us kind of really wanted to make it happen. I'll never forget the first year experience trip to DC we went on. Everything from the time we both got hangry, when we were all crammed against the windows to see the president walk across the lawn at the White House to our bus breaking down. Thank you for being my professor and role model for my freshman year, when I needed so much guidance. We didn't always see eye to eye, but the freedom and safe space you gave me to explore who I was as a student and feminist was incredibly important.

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  66. Sending love to you and your beautiful family. May you be happy, may you live with ease.

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  67. Thanks for taking us along with you, Alison, and for teaching us how to be human under the worst circumstances. We'll try to keep up. God bless you. Your friend, Kurt Eisen

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  68. Alison, I'm a random internet reader back from Baxter Sez (I don't recall how I initially found it, but I was immediately pulled in by your posts). I don't personally know you or your family, but I keep coming back to your blog(s) and your words. You are an amazing person, and I am grateful to have 'known' you through your blogs. May these next few days and months be filled with as much peace and love as possible for you and your family. So much love to you and yours, Cee

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  69. You are leaving so much of value behind as you transition out of your physical form. I hope it is comforting to know that you have a child, your publications, your students, your family. All of these and so many more things have been touched by you. That is powerful. Your spirit will go into those things and you will be remembered with love. I like this quote from Ray Bradbury, "It doesn't matter what you do, ..... so long as you change something from the way it was before you touched it into something that's like you after you take your hands away."

    Sending good thoughts.

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  70. hi Alison, I have been reading your blog for a very long time (couple years I think?). I love the way you write and think. It had been a couple weeks since I checked in and I was devastated to hear this news. I so appreciate your honesty, your willingness to share with us all of the beauty and great things in your life, but also the horrible things. This may sound trite, but this just seems so fucking unfair. I guess I, like many of your followers, thought somehow, some way you would pull through. I wish you strength in the months to come. You are an amazing person and have inspired so many who have never even met you (to say nothing of all the people you _are_ close friends with, and your family). I am sending love and good wishes your way. From Ora (a fellow feminist warrior in the classroom ;)–I too am a professor, of film studies and i have loved reading about your teaching. Your students, too, are so so lucky to know you and have learned from you).

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  71. Alison, I wanted to have thoughtful words to send to you, but, of course, I don't. Just tears and prayers and wishes and sadness. And gratitude to have known you a little bit. You're really great. (See? No thoughtful words!) Oh, and love. I'm sending you and your family love.
    Tikenya (a Vandy classmate)

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  72. This really sucks. It makes no sense that someone with so much to give will be taken away from this world. I wouldn't be who I am today if I hadn't walked into your WMST 100 class in 1999. I hate the universe these days.

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  73. Alison, I've been reading the blog for a long time and appreciating it in all of the ways so many have eloquently identified. The honesty and clarity of your thoughts and voice are qualities I remember so well from your time in leadership at the National Women's Studies Association. You helped guide the organization at such an crucial time of transition! In short, I guess, I'm adding to the chorus of voices saying that you've made your mark in many different spaces and places. I know that process continues.

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  74. Alison - I love you! I hold you in my heart all the time. I have so many memories of the laughter (and sometimes tears!) we shared in the WGS Program at VU. Your empathy, brilliance, and your ability to connect with people in a way that changes the world for the better always inspired me and everyone in your presence. I hope you know that you put more "life" into a single day on this planet than most people put into their entire existence. I will always love you and keep you in my heart.

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  75. I love you so much. You don't really know me, but your writing has inspired me. I've followed your work for years. I'm so sorry. This is so unfair.

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