A Reality Check…

You might have noticed that I’ve changed the header for the blog. Not only was my listed age no longer accurate, the description had been making me cringe for months.

“trying to maintain a productive and happy life despite being diagnosed with a serious systemic illness with no cure and a poor prognosis”.

That sentence was written over four years ago at a time when, with modifications, I led what might have looked from the outside like a fairly typical suburban life. A quality of life that I had anticipated would gradually change as my health declined.

You’d think that in taking four years to get to where I am now that the changes would have seemed gradual, but that’s far from the way it feels.

In reality, it’s been more like hanging on to a series of ledges leading to the inevitable last one – gripping the edge of each as tightly as I could before having to let myself drop to the next level. 

I wanted to keep believing that instead of steep drops, it would be a staircase on which I could occasionally climb back up a step or two to visit for a short while before a permanent change in status.

It’s just not the way it’s worked out. Talk about some harsh life lessons in accepting realities, the “glass half full” approach I’ve always tried to adopt could only take me so far. There’s a limit to how much shine anyone can put on a tough situation, regardless of how much of an optimist they might be.

There will be no miracle cure for me, there will be no remission. This only gets more difficult until it stops altogether. I no longer utter the words I used to say at the end of a particularly difficult day, “tomorrow will be better”. Those words have become as useless to me as the physical body I inhabit.

It’s not that I’m giving up,  rather it’s acceptance that I’m no longer strong enough to hold on to a particular ledge anymore. Another day, week or month passes – another ledge to let go of.

And with a little  lot of help from my daughter and my friends, finding the strength to look towards that final ledge. Averting my eyes won’t make it disappear.