The Grief that does not speak…

“Give sorrow words; the grief that does not speak
knits up the o-er wrought heart and bids it break.”

― William Shakespeare, Macbeth


There is no doubt in my mind that using words is therapeutic.  My blog has given me so much more than I have ever put into it.  I have met people through my blog that real life would never have introduced me to and they are all people I definitely was meant to meet.  Life is better by far for knowing them.  For knowing YOU.  I sit here in my ‘corner office’, tucked up in my bed, typing my heart out onto the internet, and people raise their hands and say “over here, Rach, me too!”.  I am heartened by the connections and community.  I am grateful for a place to explain the things that I find hard to fit into regular conversations.  I have growing optimism about my role in this life, why I am here, what it is I am to do.  Who I am, even.

Thank you so much for reading my words.

Tell me who you are, too? Many of you have stories of your own, words that have been waiting to be expressed.  Many of you have been waiting for the right time to write them.  This is your time. I would like to invite you to share some of your writing, here.  Poetry, stories, reflections, collected thoughts.  All types of writing welcome.  If you would like to share, my place is your place.  Gather your words and publish them in a comment below.

I can’t wait to read yours.

Let’s get our words together, lest the grief that does not speak knits up our o-er wrought hearts and bids them break.

Arohanui X

20 thoughts on “The Grief that does not speak…”

  1. When I think of grief I think of a beautiful afternoon in the last few weeks of my Mum’s life. It happened in her room at the nursing home where she was so ill with cancer. It was Winter and sprinkling and for some reason Mum’s balcony door was ajar as a flock of lorikeets flew down onto Mum’s balcony railing. Mum’s eyesight was failing but the lorikeet’s chatter was so loud and their colours so bright Mum could make out exactly where they were. As the rain became heavier the lorikeets came right into Mum’s room, sitting on her chairs and she lay in her bed with her arm outstretched hoping they’d come right to her. I can’t explain what that afternoon meant to Mum and I, as she passed away soon afterwards and the lorikeets had never visited before that day and never returned again.

  2. I met the wonderful Rachel today and she encouraged me to post on her blog, so here goes, I am doing it!!!

    Takeoff from Les Miserables ‘Empty Chairs and Empty Tables’ where Marius is singing while recovering from his wounds and imagining that he is back at the ABC café.

    Rachel’s post reminded me of the first line in this song, which gave me the idea for the poem!

    Poem, best read after listening to the above song, and preferably whilst listening to the tune! I will make one more (separate) post with my story (if I can make more than one post?). I just wanted to do something a bit different and I love incorporating music wherever possible!

    There’s a grief that can’t be spoken.
    There’s a pain goes on and on.
    POTS has stolen my health from me.
    And my energy has gone.

    I had plans to be a singer.
    I had plans to learn the harp.
    I had planned that I would travel.
    But right now, that seems too hard.

    At my table in my kitchen.
    I can see my life before me.
    Fragments of nostalgia ringing.
    I can see, it now!
    The very things that I have done.
    My life was full of colour.
    Oh to get back all those things, I’ve done.

    Oh my friends, my friends forgive me…

    (The friends who are well and full of energy)

    That my energy has gone.
    But I’m still the same old person.
    And my spark lives on and on.

    I won’t let this POTS consume me.
    Even when I’m on the floor.
    When I’m bloated and I’m nauseous.
    And my heart rate goes up more.

    Oh my friends, my friends, don’t ask me.
    What this sacrifice is for.
    But I plan to make a difference.
    I’ll be better than before!

    Written by Andrea Kortas

    Source of lyrics that I used:

      1. Thanks so much Rachel! The funny thing is that I always wanted to write a poem to this song and when I saw the title of your post, it screamed to me “YOUR OPPORTUNITY TO DO IT IS NOW”….it was meant to be lol!

  3. Here goes my other post, following the poem:

    My Story:
    Hi everyone, my name is Andrea and I have POTS. Growing up I had a life full of hardship and loss, including losing my sister when I was 9 years old, but I always used that loss and hardship to become a better person. I was always full of energy, loved having fun and being silly, had a great zest for life, and wanted to use my experiences to help others. I channeled this energy into becoming a Speech Language Therapist (and still practice as one today).

    However, over the past few years my life has changed. I started getting sicker and sicker (very slowly). It started with months of vertigo in 2009, a diagnosis of PCOS in 2010, concussion for a month in 2011, reactive arthritis in 2012, arthritis again and hyperthyroidism at the beginning of 2013 (now resolved), accompanied by an unexplained raise in my heart rate (which was initially attributed to my temporary episode of hyperthyroidism, but now I know that isn’t so). Mid 2013, I experienced a personal trauma, followed by unexplained weight gain and excessive bloating around my middle, which was suspected to be Cushing’s disease (but wasn’t). That coupled with excessive tiredness, having power naps in my morning tea and lunch breaks just to get through the day at my fulltime job, nearly falling asleep in front of clients, constantly feeling in a state of adrenalin, amongst zillions of other symptoms.

    I had been to two endocrinologists and a rheumatologist and was not impressed at the thought of seeing any more specialists ending in ‘ologist’.

    Then the bombshell.

    After several months of feeling not too bad, it was March 2014, and all of a sudden one evening, after going for a walk and doing only 5 minutes of jogging, my heart rate started jumping up high every time I stood up. I freaked out and went to the emergency after-hours doctors. I was told that what was happening was not life threatening, but not normal either. A referral to a cardiologist and a 24-hour holter monitor test later, I was told that I most likely have POTS and that my heart was structurally fine (phew!), despite my impressive family history list of heart problems.

    Then was the waiting. Weeks of waiting so that I could get a Tilt Table Test (TTT) at the hospital, to get a much needed official diagnosis so that I could get treatment.

    And in the meantime, the heat was making my symptoms so bad that I couldn’t stand without my heart racing or without getting dizzy or pre-syncope. Not to do my makeup, not to clean my teeth, not to shower, not to do the dishes, not to help my hard working partner with the housework, not to put my clothes away….and the list goes on and on.

    Then finally, an answer!

    The day arrived for my TTT and my body behaved just as I wanted it to. My heart rate was up extra high from the anxiety of going to hospital. I lay on that table and my heart rate went up even more as I was strapped in. I lay staring at the ceiling, my heart pounding. Then finally, THE tilt! My heart instantly jumped higher and higher, my body started trembling, I went dizzy and thought I was going to pass out, my hands and feet went so numb that I couldn’t feel them. All from being tilted to a specific angle.

    And then more waiting for my result, another trip to the cardiologist, and my answer finally arrived! I have POTS. I HAVE POTS! I can finally say I have something. NO people I am NOT crazy. NO people it is NOT all in my head. NO people, I am NOT attention seeking! In your face! Every single one of your damn faces, every single one of you who ever doubted me! I AM sick and I knew it!

    My life has completely changed. I have treatment which helps, but it doesn’t ‘fix’ anything or make me better. It is a huge adjustment, and it is a grieving process. But despite the hardship, I believe that everything happens for a reason. I would like to believe that this experience will teach me a life lesson and that I may even be able to use it to help others and change their lives. It will teach me to appreciate the small things in life more. It will teach me to not get involved in other people’s superficial poison. And most importantly, it will show me true unconditional love and who my true friends are. While this illness has it’s (MANY) barriers, it is also a blessing in disguise.

    My name is Andrea, and I’m a potsy! (Catchy isn’t it?) ☺

    1. Well written Andrea, this would make a great ‘about me’ page on your blog one day 😉 …Gentle elbow to ribs…
      It’s never easy waiting for or receiving a diagnosis, but the good thing about it is being able to identify what you can do that might help, knowing that you are not crazy (!) and being kinder to yourself. I sincerely hope that you will get to that harp one day Andrea. It was lovely meeting you today, thanks for dropping in.

      1. Thanks Rach. Hahaha baby steps, but yes perhaps one day when I gain the confidence and energy to do a blog, maybe I will do just that!

        It definitely helps having the diagnosis, but one thing I didn’t mention was this amazing network of people that I have found. That has been the biggest help ever. You are all amazing!!! Thank you all for your ongoing help, advice, words of wisdom, etc.

        And I’m so glad I’ve met someone (you) in the same city as me. You’re right, it’s great to find your own clan/tribe 🙂

  4. When I was 19 I sat the entrance test and joined Mensa. In search of friends, camaraderie. Plus I thought Mensans had secret meetings where they worked to help solve societal problems (not so). I quickly learned it was mostly about playing board games and sitting around chatting – which suits me down to the ground anyway. Could have done without listening to the hour long debate about the importation of Dutch unpasteurised cheese at the first meeting I attended though. What people don’t know is the main reason I sat the entrance test for Mensa was because a week prior I’d run out of the sheltered factory which I had been forced to work in. Fitting scrabble pieces in a 10 x 10 template (amongst various other basic tasks) all day long. For $5 pay per day. Did you know that 2 sides of a scrabble piece are slightly longer than the other 2? I had to fit them the right way up in the template, so it wasn’t an entirely mindless process – I couldn’t let my mind wander from that place. I quickly noticed the owners of the workshop drove very nice cars. Some of the other workers had been there for over a decade; making the owners wealthy under the guise of occupational therapy. These people worked hard and deserved to be paid appropriately. Anyway, one day I was called into the office for my assessment. The owners told me I was doing well and the ideal scenario would be that one day I could work in a ‘real factory’. Later that day I ran out and never went back. I joined Mensa because I wanted to prove to myself that there was more to me than what they told me back in the sheltered factory. Joining Mensa was also the time when my Mum finally started treating me like a human being again; after years of telling me things like euthanasia should be allowed for people like me.

    1. Far out. That was so powerful Z. I want to read more of your writing! Your experiences should be heard, there is so much in them that people need to understand about our broken system and how it breaks so many people down. I am glad that you have so much fire in you. X

  5. Thanks Rachel. I think I must have an independent spirit. Lived through terrible situations all but alone in the world – even when people were literally telling me to go jump off a cliff (stubborn of me not to do it, eh. Even though fighting serious suicidal thoughts). Always fought the system I found myself in when I thought the goal or function was to keep me down. Still ponder about me in that adult psych residence I was so close to being put in – and drugged up to the eyeballs in. Thank goodness D came along and helped me fight the psych. staff off. I was being seriously railroaded by then, though holding my own up to a point. Often ‘see’ myself in what was going to be my room there, staring at the faded flowery wallpaper hour after hour day after day. Too close. I often wonder how many people in those places could have had a better life if given the chance. How many have been lost /because/ of the system, the drugs, the intense ‘relive-your-trauma’ therapy. The complete destruction of self belief.

    1. It is heartbreaking isn’t it? I am so glad D came along too!!! I often think about various junctions in my life, and who I would have been if I had taken the other path. It makes me grateful for my own stubborness and choices. X Your independent spirit is serving you well, Z!

  6. It’s quite powerful how much draw a simple “Over here, me too!” has, isn’t it! My two-year-old has just learned to use the phrase “Me too” and it never fails to draw me in. There is something complicit in it, that we both think the same way about something, or will do something together, or share something between us. That’s how it can feel when you discover “your people” too, and meeting them online is no different. Keep giving the grief words. And the frustrations, the fears, the confusion… and the joy and celebration and laughter. Thank goodness for words!

  7. As I read these inspired blogs where you Rach, have impelled and provoked and let these folk loose in their own individual and talented ways, I thought I should put some of my musings and convictions into a response that is also meant to be an encouragement.
    Hope deferred, becomes in its undesirable form, a looking back with numbing grief, it makes your heart sick. Grieving in this form may grip you for a while and is not therefore necessarily wrong, but if you allow it, it can stumble you and hobble you, mired in what might have been.

    Then grieving can also be a healing as one recounts, remembers and wraps up the good things and puts to bed the hurts, as forgiveness if necessary, warms your heart.
    No one can specifically tell you how to grieve, it is a journey taken in solitary tension sometimes unspoken and little displayed, sometimes very obvious and exposed.
    Hope resides in the joy of expectation, when your mind encompasses the worst and the best and resolves that neither life nor death can separate us from love.

    Just know we all ride the same path together.

  8. Living with a chronic pain or an illness of any kind can be a “grief process”. Learning to live with it, manage it, let go of how you once were and accept how things are moving forward – that’s all a grief process. In many ways, the old “you” dies and it takes time and healing to grieve the “old you” and accept the new. I know and understand as it’s been that way for me, living with pain. Giving up parts of myself and things I adored doing and changing my life dramatically as a result. Grief is a silent thing…there are only a very few who understand…except those of us who are in similar situations. I may not be exactly where you are…I’m where I am…we’re all different and have different experiences with illness..but I heartfully relate. I hear you and follow your words with empathy, compassion and love. xx

    1. Thanks Katie. You are so right. There is such a process to go through.
      I’m sorry to hear about your pain, I think you told me a bit about that when I first ‘met’ you online. I hope you are managing okay and finding a way forward. I am heartened by the unexpected wins in this grief process. In saying goodbye to the ‘old me’ I’ve discovered someone I like a whole lot more. It’s strange, but good.

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