I picked up my new set of eyeglasses today. Before my diagnosis, I’d had my annual eye exam and found that for once, my prescription hadn’t changed that much; what I thought was a decline in sight was a result of the coating on my glass lens deteriorating. That seems like the last piece of good news I’d heard, and I hadn’t yet ordered new specs when I got my death sentence.

I wondered for a while if I should bother even getting a new pair—wouldn’t be wearing them very long, these will probably be the last pair I’ll ever need. Recognizing a bit of a self-pity wallow when I saw it, I went out and ordered the specs. It turned out to be the first mundane task post dx that we managed, my first trip out in public- and as I realized today, symbolic of what my next step must be. And that is, refocus.

For someone incredibly nearsighted, I’ve never been able to live in the moment. A myopic malcontent, my farsighted imagination lives somewhere between “later on” and “someday”.

Time to refocus. I can no longer look towards “someday”, because I’m not going to get there. I need to live today, to appreciate what’s going on today. I need to focus, and refocus, on short-term goals, as there is no longer a long-term. Stop and smell the roses and all that. (Insert your favourite “live in the moment” cliché here.)

The problem is that while I get brief respite through the company of good friends, or in the humdrum of daily routine, the reality of the horrific end I’m facing inevitably comes crashing down, pinning me so tightly with fear that I can’t breathe, at times I literally cannot move. I cry and gasp and struggle to breathe, to break free until I’m exhausted. At night, I’ve reached the end of my already limited energy, and my mind shuts down and I’m able to escape, mercifully, into sleep. Right now, it’s easier to dance in the ring with the terror, knowing that I’m outmatched, bracing myself for each blow, not turning my back and getting sucker punched. I convince myself I can last longer this way.

But is it any way to live? I want to be able to have good days, and enjoy my time left, and leave my husband, my family, my friends with memories of who I am, not who ALS turned me into.

So finding a way to straddle that line between the hopelessness that defines this disease with the things I take pleasure from must be my prime focus, if the rest of my days are to have any meaning. I have a lot to live for, and perhaps this is what’s making this even harder for if I didn’t, I surely would have given up already.

And so I’m writing with my new glasses on, these unscratched lenses that are letting my eyes see more clearly, more focused. I just need to find a way for my head and heart to follow suit.


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