It’s a cold and broken Hallelujah. 

Hallelujah is by definition a word of praise and rejoicing. You shout it when you are happy, when you have something to celebrate.

I have been looking, since diagnosis, for the moment when I could muster at least a cold and broken hallelujah. I would take that – it would be the start of “ok”.

I would like to say that I told the younglings on Friday and it was totally ok and everything is good. Perhaps in bits it was ok. David needed help with a mechanical thing, so I arranged that. Taryn needed a bit of cheerleading, so I did that. I had a sense of how to move forward. Mostly it’s by saying that incapacity will come, but it isn’t here yet. For today I might as well carry on carrying on.

Ok is never coming. I’m never going to be ok with this. I need something different then. I need to be able to live with a chronic and degenerative disease. I need to be able to cope with not just the physical symptoms and relapses, but with the emotional instability – tomorrow I could wake up and not be able to walk. I will, literally, never know what the next day brings.

Kuri gave me the word – I need to be able to integrate this, somehow. To make portions – like the daily rest period – routine. I need to be able to understand that the future was always uncertain and you must prioritize. I need to be able to manage the panic at the thought of an uncertain future.

One day soon I need to be able to manage an entire chapter of the MS book – the chapter on disease course and progression.

One day soon I need to be able to take this all in.

One day soon. Not today.

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5 Responses to Hallelujah

  1. Mali says:

    I can’t pretend to know how you feel. But I have been diagnosed with a condition, that is progressive, and – at its worst – untreatable. So I understand the inability to manage a chapter of the book. I signed up for a support group, but it is too terrifying for me – at the moment – to visit. So I don’t. I will one day. Just not yet. I have enough to deal with at the moment.

    So the fact that you’re understanding the need to “integrate” is in my view a great step. And that’s all you can do at the moment. Small increments. Don’t beat yourself up for not doing more. Take it as it comes, and as you can deal with it.

    The act of integrating will take time, understanding, acceptance. I know you’ve been through this before. And it sucks that you have to go through it again. But you’ll get there – you’ll be able to take it all in. Knowing that you can do that should be enough just for the moment. Because knowing what you can’t cope with today? That’s part of it all too, I think.

  2. Reese says:

    Perhaps stages of dealing when the symptoms reach a threshold? For now, symptoms mild? Dealing: passive. Later, symptoms stronger. Dealing: active.

    There is no manual for how to deal with a bag of unfair horror. Put your best foot forward when you can, and you will unfortunately fall flat on your face despite your best efforts. My friends who have had diagnoses run the gambit from full fledge denial to eerily calm. All I can do is love them and check in.

    I hate that this is happening to you. If I haven’t said that yet, I do so very much hate it…..<3

  3. Amel says:

    When I was in the throes of my infertility grief, I found this particular blog post…her blog posts have helped me a lot and though she’s gone from this world, her words have touched and inspired so many people.

    Just thought you’d like to take a look in case you haven’t read any of her posts:


  4. loribeth says:

    It’s OK for this not to be OK. (((hugs)))

  5. debby says:

    I think that perhaps you simply dance along as best you can, dealing with the challenges when they present themselves. MS is a tough challenge. You are a tough woman. You and MS will go at it hammer and tongs. You will work out a truce. It will not be perfect. Life never is. But you will learn to live with the things that cannot be changed, because, Mrs. Spit, you have done this for your very whole life. I love you, and I cannot stop thinking of you in this time. I wish that there was something that I could do.

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