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.