Update


Spring comes to Brookline

It has been three months since I last posted on Slow Muse. I had envisioned that I would return to writing once I could talk about my current condition in the past tense. But given frequent inquiries of “Where are you?” and a timeline for recovery that is unknown, I am stepping back in now.

Last January I started having headaches. Then one afternoon my eyesight just went double. After a lot of hospital time and “we don’t know what’s wrong,” I was diagnosed with a carotid cavernous fistula. I had neurosurgery in April to repair this condition and was told it may be six months before my eyesight returns. And of course there are no guarantees that it will come back at all.

Being unable to read, write, paint or drive changes everything. (Voice to text is a godsend.) But like anyone who has been through a health crisis knows, these unexpected detours bring their own perspective and hard won wisdom. I am new at this and not very adept. But I am learning as I go, and I am paying close attention to friends who have developed skills at navigating challenges like this. And do it with grace.

Thank you to all of you who have reached out to me. It is so appreciated.

More to come.

37 Comment

  1. Deborah, you are as inspiring as you are wise, and as one of my favorite living artists and thinkers, I hold you at the center of my heart . Breathing in the light of your unextinguishable vision. I love you. ❤

    1. deborahbarlow says:

      So touched by your words Rachael. Thank you.

  2. Oh, Deborah, I am so very sorry to learn what has happened to you. I am hoping and wishing for the best outcome because your sight and insight are so valuable to all of us as well as to you.

    1. deborahbarlow says:

      I so appreciate this Nancy.

  3. Deborah – So sorry to hear this massive life-altering event has been one to disrupt your life and doings. The eyes – oh, the ability to see – for a painter is a necessity, Perhaps your expressive and incisive facility with language will do you in good stead at this time of waiting. Remember, you are a force! G

    1. deborahbarlow says:

      Thank you so much G. I so appreciate your words.

  4. deborahbarlow says:

    Thank you for this my long time online cotraveler.

  5. It feels strange to hit the ‘Like This’ button, when my heart aches for you as you endure this awful turn of events.

    What I ‘like’ though, is knowing you are energised again to share with us, to inspire us with your courage, openness and grace.

    You are loved and appreciated by so many, Deb. Never forget that.
    ML

    1. deborahbarlow says:

      Blessings dear MLS.

  6. ashalhope says:

    Dear Deborah, I am so sorry to hear that you are going through this, or should I say ‘being with’ this, as I’m sure you are with the graceful inquiry which you do about all your life, it seems to me. Please know that I am thinking of you with support and much love. Adelaide

    1. deborahbarlow says:

      Thank you for your wise words Adelaide. It means a lot to me.

  7. lynetteh says:

    Hi Deborah, it is true we miss your lively presence so it is wonderful to read this post. You truly are a force and one of the warmest, most wise and insightful artists I know. Sending you love and healing mojo and call if you need anything— I’m not too far away!

    1. deborahbarlow says:

      Thank you dear Lynette. You have been so attentive and kind.

  8. 3beeches says:

    oh man, i am SO sorry! – i have lived all my life (or all of it i can remember) with lopsided vision… do you know Borges’ poem ‘The Gifts’?

    Let none think that I by bear or make light
    Of this manifesting the mastery
    Of God, who with excelling irony
    Gives me at once both books and night.

    In this city of books he made these eyes
    The sightless rulers who can only read,
    In libraries of dreams, the pointless
    Paragraphs each new dawn offers

    To awakened care. In vain the day
    Squanders on them its infinite books,
    As difficult as the difficult scripts
    That perished in Alexandria.

    An old Greek story tells how some king died
    Of hunger and thirst, though proffered springs and fruits;
    My bearing lost, I trudge from side to side
    Of this lofty, long blind library.

    The walls present, but uselessly,
    Encyclopedia, atlas, Orient
    And the West, all centuries, dynasties,
    Symbols, cosmos and cosmogonies.

    Slow in my darkness, I explore
    The hollow gloom with my hesitant stick,
    I, that used to figure Paradise
    In such a library’s guise.

    Something that surely cannot be called
    Mere chance must rule these things;
    Some other man has met this doom
    On other days of many books and the dark.

    As I walk through the slow galleries
    I grow to feel with a kind of holy dread
    That I am that other, I am the dead,
    And the steps I make are also his.

    Which of us two is writing now these lines
    About a plural I and a single gloom?
    What does it matter what word is my name
    If the curse is indivisibly the same?

    Groussac or Borges, I gaze at this beloved
    World that grows more shapeless, and its light
    Dies down into a pale, uncertain ash
    Resembling sleep and the oblivion of night.

    [From Dreamtigers, by Jorge Luis Borges, translated by Harold Morland]reproach make light

    Perhaps someone can read that for you. I hope so.

    Lots of love from – of all places! – Switzerland

    1. deborahbarlow says:

      This is an amazing poem. Thank you for sharing it here. Blessings to you, and enjoy Switzerland!

  9. 3beeches says:

    that opening line should read ‘bear reproach or make light’… sorry

  10. ♥ Very hard won wisdom indeed … I wish you strength.

    1. deborahbarlow says:

      So hard won, and still waiting on the wisdom delivery! Thank you.

  11. Carol says:

    I had no idea you are going through this. Though we’ve never met, you were so welcoming and warm toward me in an email a couple of years ago — I’ve always wanted to meet you. I am so very sorry and I will send you light and love and prayers for renewed vision.

    1. deborahbarlow says:

      Thank you so much Carol.

  12. These sorts of unexpected detours are so difficult to negotiate. Especially with grace. Surrender is part of the process. I’m very sorry to hear of your health problems and your surgery. I send you all good thoughts for a full recovery.

    1. deborahbarlow says:

      Thank you Janice.

  13. dipittsburgh says:

    Deb, the generosity of your vunerability is humbling. The surrender I hear is an emptying out of all expectations, holding space for your highest unfolding. What could be more graceful? I send light and love!

    1. deborahbarlow says:

      Di, ever my soul sister…Thank you.

  14. I’m one of those virtual blog-following ‘friends’ who has noticed and regretted your absence from the blogosphere. Oh, the challenges for a visual artist who experiences visual problems…this must be a hard and occasionally frightening time for you and your loved ones. You are a deeply creative person who will find ways to problem-solve the challenges, though, of that I feel sure. Voice-to-text is one way; there will be others. Many blessings, and thank you for letting us know so we can send healing vibes.

    1. deborahbarlow says:

      Ann, I so appreciate your words.

  15. Jill Blanchard says:

    Deb, I came to the site looking for solace for my own woes and found this update after being away too long. I’m sending all my positive thoughts your way and am hopeful for a full recovery.

    1. deborahbarlow says:

      Thank you for your words Jill. So appreciated.

  16. heatherdyer says:

    Very sorry to hear this, and my thoughts are with you. You are a ‘seer’ in so many ways and your posts are always inspiring and they make me see things in new ways, too. Thank you for everything you do.

    1. deborahbarlow says:

      Thank you Heather for your words. The concept of being a “seer” has new meaning for me these days. Best wishes to you.

  17. MaryAnn Camps says:

    Deborah, I’m so sorry to hear of your eye condition and all you’ve been through. Like many, I had wondered at your absence. I hope things are improving and that you continue to a full recovery. I also want to thank you for your elegant, insightful and thought provoking blog posts. With great appreciation.

    1. deborahbarlow says:

      Words like yours mean so much to me. Thank you for your support of my writing. I look forward to returning to that part of my life again. Soon I hope!

  18. Paula Z. Tusler says:

    Hi Deb,

    Jill told me about what’s going on.

    How are you managing? How can I help? Do you want to talk on the phone? Watch a tv show together and I’ll explain it to you? Read things to you?
    Give you a ride some where?
    Call me. If I don’t answer, leave me a time to call you back.
    Big hugs
    617-416-2617

    Paula

    1. deborahbarlow says:

      Paula, I am so touched by your kind offer. Thank you! I am very comforted to know I can reach out to you. I send you my best.

  19. Paula Z. Tusler says:

    Yes, don’t be shy about reaching out.
    My brother is a consultant for adaptive technology for people with disabilities, including blindness. I can ask him for some beginning research directions.
    Also, at the UCSC new student event there was an alumna who is a graduate student at MIT. She had made some apps for undergrads with vision impairment, if I remember correctly. She might be a good resource as well.

    1. deborahbarlow says:

      Thank you Paula for your offer. I so appreciate your empathy and support. I am post op on operation 2 and hopeful that my vision is on the mend. Three to six months but I’ll take it! All the best to you.

  20. Beata says:

    Deborah, just want to tell you how much I’m thinking of you and sending you a big hug. I know you’ll pull through this – you are very strong and vibrant and no carotid cavernous fistula is going to get you down!

Comments are closed.