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Undiagnosis: I am so upset I can't even joke about it... - GERDA SAUNDERS

14 Comments

  1. Kathy and Bruce
    November 4, 2019 @ 7:14 pm

    Gerda,

    I am as confused as you but you are still Gerda to me, that wonderful, bright, intelligent, generous and kind person I met all those years ago. We have all grown in many directions but you are still Gerda to me and Bruce. We love you because you are you. You are Gerda Saunders to us.

    Reply

    • Gerda Saunders
      November 6, 2019 @ 7:50 am

      Thanks so much for being our longest made-in-America family, Kathy and Bruce, and for always being there for us. YOur beautiful words shore up the parts of my old self that i still feel inside me. LOve you so much.

      Reply

  2. Sonette Lategan
    November 5, 2019 @ 7:06 am

    Liewe Gerda, ek voel hartseer om te hoor van hierdie deurmekaar tyd wat jy en Peter nou beleef. Dankie dat jy dit deel met ons lesers. Sterkte vorentoe – en ons hoor graag van jou as jy meer inligting oor jou toestand het. As 53-jarige vrou is ek terdeë bewus van alles in my brein en liggaam wat nie meer soos tevore werk nie. Verder beleef ek en my tydgenote die kommer van ouers wat met verskillende tipes dementia gediagnoseer word, met die gepaardgaande moeilike besluite rondom so ‘n person se versorging (in Suid-Afrika). Jou gewilligheid om jou siekte-pad met die publiek te deel, gee inligting en nuwe moontlikhede vir mense in dieselfde of soortgelyke situasies. Dankie daarvoor!
    Hier in SA baai ons tans op die euforie-gloed van die rugby- wêreldbeker wat netnou hier by OR Tambo Lughawe aankom. Groete en sterkte!

    Reply

    • Gerda Saunders
      November 6, 2019 @ 7:59 am

      Liewe Sonette, baie dankie vir jou welbetragte woorde. Jy is reg dat soortgelyke probleme van liggaam en siel op elkeen van ons se pad is. Sterke vir jou en die mense vir wie jy lief is om die moeilike besluite vir jouself en vir mekaar te maak. Dit beteken so baie vir my dat jy jouself en jou familiekring se moeilikhede in my skryf herken–dit laat my voel ek moet maar myself bymekaartrek en aanhou skryf! Geniet die rugby-wen–ek sien dis groot trots en vreugde wat op al my SA kennisse se Facebook en ander media verskyn! Mooibly, vir jou en jou geliefdes. (OPmerking:iets in jou skryf in die mooi Afrikaans het ‘n prop uit my brein getrek en skielik voel ek of “ou” Afrikaanse woorde en sinsnede uit my kop vloei na die keyboard–dankie.)

      Reply

  3. debbie mintowt
    November 5, 2019 @ 7:40 am

    Oh Gerda, what a difficult circumstance. You write about it so well and make it all so understandable that you would feel such pain and uncertainty, confusion and despair. But far from feeling as though you are in any way a ‘fake’ please take comfort from knowing that this new revelation will probably touch people just as much as your honesty has thus far in all your writings and videos. I, like everyone, wish you continued strength and courage as you are led down this fork in the road. Big hugs to you all. I think of you often. You continue to be an inspiration.

    Reply

    • Gerda Saunders
      November 6, 2019 @ 8:01 am

      Thanks so much for your empathy, Debbie, and your understanding of why this is a big blow for me. It makes me very happy that my writing means something to you and others. I appreciate your kind wishes for me. Consider yourself hugged! Lots of love.

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  4. Ingrid Schmidt
    November 5, 2019 @ 8:29 am

    Dear Gerda, I read your words and feel how painful and shocking this undiagnosis is. I feel your confusion, the worry and helplessness. I am so grateful to you for explaining such complex feelings so clearly and eloquently. I hope that I never have the insight which you so generously share because that would mean that I too am suffering some inexplicable trauma. Please rest assured, I know that you are not an imposter and I do not feel betrayed. Your book Memory’s Last Breath and this blog are treasures that have enriched my understanding of the mind and guided me on how to navigate this complex world with more empathy.

    Reply

    • Gerda Saunders
      November 6, 2019 @ 8:05 am

      Dear Ingrid, I am so glad to hear from you despite my slacking in being in touch with you. Thanks for your kind assurances that you recognize my blow and confusion is part of being human and that you understand its impact on my. I will catch up with you in email to get your latest news. Being in touch with you has been very meaningful to me–I wish that I could have finished Edith’s story,but my head won’t hold more than a few sentences together these days without extreme energy output. I learned much from you and your family about perseverance and love in the face of life’s sometimes difficult progression . Lots and lots of love.

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  5. Brenda Hofmeyr
    November 5, 2019 @ 1:33 pm

    Dearest “only” friend, your unwavering, nearly brutal honesty (to yourself) is but one of the many reasons I love you so much and have for 42 years. This has been written with such wisdom and pain! I do not know whether I should advise you to go ahead gently or fiercely. Give me a hug please. xxx

    Reply

    • Gerda Saunders
      November 6, 2019 @ 8:09 am

      Watermelon-sized hug coming your way! Yes, my “only” friend, if there is honesty in what I say it has much to do within meeting you at a time when I did not have the vocabulary or “habit” of expressing my feelings–you have been my life-long example of cutting through the crap and saying what you see before you. In your work, your life, your relationships, your painting. Love you and Nicola and Corey and the rest of you so very much.

      Reply

  6. Elza Koen
    November 7, 2019 @ 8:25 am

    Dearest Gerda, I feel for you and your confusion and hope that clarity will one day prevail!

    For scientific, academic, you, this is a blow, but makes me aware of how little we can pinpoint about the brain.All the research and knowledge is yet but a drop in the fountain of knowledge.

    Being more aware of Parkinson’s , with Koos, I often think that no two people with PD have the same symptoms.They manifest in differing ways in each patient. Parts of the brain age faster than others, but how intricately those differences manifest, gives us an idea (or not! ) of how complex and wonderful the brain is!

    All the measuring tools have not been developed yet, so there is scope for research.

    But let us concentrate on the wonderful person and friend you are and have been all your life- more than half of which we have been privileged to know you!
    Lots of love to you and your dear ones!
    Elza.

    Reply

  7. Keir Graff
    November 7, 2019 @ 8:45 am

    Thank you for your bravery and your eloquence, Gerda. Regardless of your diagnosis or undiagnosis, your voice and your thoughts are important to the world.

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  8. shen
    November 8, 2019 @ 3:05 pm

    Oh Gerda, I could “feel” how much a blow to you this news was, but it is really amazing to have it placed in an intellectual lesson I can comprehend. You are such a writer! I am just very glad that in a world which has unending unrelenting uncertainty as its only certainty our friendship/family is one strong, sure thing.

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  9. Sherri Vance
    November 10, 2019 @ 10:02 am

    Dear Gerda, How frustrating!
    I’m so sorry you’re going through this. Your description of the painful uncertainty–and the impact on imago and vision–resulting from this undiagnosis is compelling and helpful. For conference attendees, it seems like these insights could be illuminating, to help them understand what people with dementia experience if a diagnosis shifts.
    I was fuzzy about Schrodinger’s Cat (I’d heard the phrase but hadn’t thought about it much. Thanks for sending me to YouTube to learn about this!

    Reply

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