wings and things


on February 25, 2015

“If you listen quietly enough life will whisper its secrets to you”
― Rasheed Ogunlaru

Anthony’s dysarthria is getting worse. Dysarthria is difficulty in speaking and, in Parkinson’s disease, is caused by the vocal muscles not working properly. Except for occasional unwhispered flashes of eloquence (usually in response to visitors or staff talking directly to him and waiting for an answer), his voice now is mostly a whisper.

This means that over a period of hours, Ants and I may only speak a few sentences and that it is mostly me doing the talking. Sometimes I have to put my ear right next to his mouth to hear what he is whispering and often I still won’t understand and he will shake his head in resigned frustration.

At other times, Ants may form meaningful words into sentences that to me are indecipherable. As a result my mind-reading abilities are improving and usually I will be able to figure out what he is saying. Sometimes, of course, the sentences do make sense syntactically, but not semantically, for example when he asks me to move the calves outside his window.

It may be a long way off, or it may be soon, but eventually Ants may not be able to speak at all so I am preparing myself for that possibility by writing down the things he does say as well as the things that I say that trigger his half-smile. I am a bit scared though because his facial expression is mostly pretty frozen (another PD thing) so it may be hard to ‘read’ him.

The contrast between this whispering Anthony and the loud, bellowing, laughing person he used to be is acute but I refuse to allow this to be heartbreaking, and I refuse to revert to the fug of despair I felt so long ago that I hardly remember its blah. There is nothing heroic about this newfound attitude; it’s a matter of pragmatism and survival I guess.

There was a period of time way back when Anthony’s inability to smile spontaneously, coupled with my down-in-the-dumpness, made my visits to him sad and difficult and I would come home in tears. But now it is so wonderful because I look forward to seeing Ants, almost like the teenager-in-love I used to be, and evoking this new half-smile from him easily now, and often, is fantastic fun!

That half-smile highlights our days and Anthony’s whispered “I love you, Jules” makes me feel like the luckiest woman in the world. I so admire his resilience, acceptance and unsadness in the face of this horrible disease. His fortitude and courage continues to amaze me. He is not just my hero; he is a hero of Parkinson’s disease and I salute him.

And every whisper is a weapon against the impending silence.

weights 2

54 responses to “Whispers

  1. Terry says:

    Wow, you amaze me. So strong, that is all I can find words to say right now! Hugs

  2. Meg says:

    Heroes are only heroes when they don’t know they are. That’s you, my beloved daughter.

  3. Trisha says:

    You are handling all of this so beautifully. Your attitude is so very admirable!

  4. Julie, while Ants may be unable to communicate either by words or facial expressions, you will always have ‘touch’ …. Diane

  5. Julie, you are a special person because of your love for Ants. I feel your love when you write about him. I loved the photo of him sitting in the chair, with his smile. My Heart breaks for you, for him … this is a part of life that is so sad, painful. I just wanted you to know I care. Gloria ❤

  6. arlene says:

    Praying that you find strength in all this Julie. Hugs to you and your family. Praying for you.

  7. Judy says:

    Well, it’s obvious from the picture above that Anthony can’t “weight” to see you! What a love story you have written.

  8. Love conquers all this earthly stuff – true love lives forever xox

  9. And every whisper is a weapon against the impending silence. – What a powerful line Julie! Yours and Anthony’s love is a formidable force. ❤ HUGS
    Diana xo

  10. viveka says:

    Julie, for me is what you and Ant has … the love story of the century and I can’t even image how tough it must be on you at times and of course even for him. I suppose your strength is the love you have for each other. This is post is so beautiful … it’s the most beautiful love song – a song of both joy and sadness.

  11. susanpoozan says:

    You are so brave and so is Anthony, my heart bleeds for you both.

  12. I have never before read of so much devotion of a wife for her husband as I have reading this post and indeed your blog in its entirety. You are amazing.

  13. what a beautiful post.

  14. mimijk says:

    I too salute him – and you…I remember when this period from sound to silence…my father had a magnificent voice (both spoken and in song)..and I went on in conversation with him long after I could hear any response. In my heart, we were still having a dialogue – arguably still are.

  15. I know I’m cheaply paraphrasing someone else’s great words, but how your loves grows Julie, is what you keep capturing. I just know that whatever needs said between you and Anthony, will be felt between you and Anthony. Again, I love your love.

  16. cobbies69 says:

    It must be very hard for you, but can see your strength…

  17. Vicki says:

    True Love Never Dies and your love for each other doesn’t need words.
    It’s always there is every breath you both take.
    Each time your eyes meet
    And every silent song you both sing.
    You are both very blessed to love and have loved.
    Just as you are blessed to have had (little) Ming.

    I wonder if (the big) Ming knows what wonderful parents he has?

    Hope so.


  18. Aww, Jules, my heart is with you. And Ants.

  19. My Heartsong says:

    This is a true love story-kudos to both of you.

  20. artfulanxiety says:

    Sort of reminds me that it’s the little things in life, isn’t it?

  21. Yes this is hard on you but it also must be hard on Anthony, I can’t imagine the frustration of not getting my thoughts across, you are an amazing woman just so you know being there each day for him I know to you it just feels like the natural thing to do but many wouldn’t many would place him in a home and forget about him which makes me sad and angry when I think of that

  22. Jules you remind me so much of my aunt Louise who took care of my uncle Jean for twenty years at home. I think that I’ve told you this before how much your love story is so beautiful just like hers was. Hugs Jules xo

  23. I admire you both so much x

  24. Judith Post says:

    Half-smiles and whispers can inspire, but so do you. Sorry I’ve been MIA, but I caught a virus going around and it stuck around a while. Feeling better now. I always enjoy your posts.

  25. Such a great last line!

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