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It may seem only a few hours since I last blogged, but it has been a tough one. I’ve realized that this is not quite as easy as I had thought. It’s a hard situation, but writing has helped- and I can’t cut that off now.
I admit to a serious wobble. To be honest, I probably suffered from overconfidence in my attitude and positivity, thinking they would carry me through the darkest hours. Over the last couple of days, I won’t pretend otherwise- PSP bested me, and I have a newfound respect for it. People reading my blogs may have sensed that I was cracking, and to be honest, I guess I was- and maybe still am. But I’ve decided to acknowledge that and continue writing at a pace that feels right for me, even if it’s slower than before, because I can’t let go of the passion for writing I have discovered.
It wasn’t the physical condition that got me- in fact, I’ve felt relatively good the past week. It was the emotional side, and it floored me.
My daughter had a tasting event for her upcoming wedding- something I had always dreamed of. The combination of a daughter’s wedding and food- what could possibly beat that? The Father of the Bride has gone to my head and made me giddy with the idea that my baby is getting married and yet, in an anguishing decision, I chose not to go because of changes in my diet and the risk of choking. I simply wouldn’t have been able to enjoy it or take part, and I thought it would be too hard for me. I think I was right, but it was truly awful to be at home while the rest of the family was there. I let it be a true victory for PSP.
The result played out in a ridiculous blog I posted about crossword games and then another post (both deleted)- my way of saying PSP had got me. I should have stayed off the computer and watched a Netflix drama or done something other than write to cover my feelings.
One aspect of my blogging has been a slight touch of overconfidence- “I’ve got this.” The seeming lull in physical decline these past few days fed that beast, and then the mental side hammered me.
And if it hammers me, my guess is it can hammer anyone- patient, caregiver, or loved one. PSP is simply huge and must be treated as a worthy adversary. It’s destroying my body in ways that aren’t always visible when you sit down.
I can barely eat or drink anything for fear of choking. I’m completely unable to travel and more or less homebound due to extreme slowness and terrible balance. I can’t even go to a restaurant and have a normal meal again. But it is not these devastating changes that have scared me, it is the ones coming down the road- and for these I will have to dig even deeper and turn ever more to my core faith. I will also need all the support I can get, and I want to use the blog to help me for as long as I am able.
So, what’s the message for me and others? It’s not easy, and it changes so much in life. That said, it doesn’t have to control every aspect of how we live. It’s taken me 24 hours, but I’m more humbled now and aware of the real challenge I face.
As for blogging, I found this helpful this morning, so I’m posting. I may post once or twice a day, I may take a week off, I am going to try my best to find a natural rhythm and not write out of a sense of impulse. I am also going to pull back a little from the images- it was in danger of turning into an illustration blog, and that is doing a disservice to the core message. So I’m going to cut it back totally or at least a lot. But I’ve made a mental decision to find the right pace- there’s no editorial window. I’ve booked a short break by the sea with my wife next week to get some air and a change, and I may take a few days off from blogging.
I’ve found, however, that blogging is a sanctuary for me- a place to help myself and others deal with a very difficult challenge. I’m not going to sugarcoat things from here on in, but I’ll give myself time to digest before sharing difficult news and changes. I’ll also try to limit myself from excess during the lulls.
As so many have said, I should be free to write what I want, and people can choose whether to read it. It’s not quite that simple, but for this morning, it has helped me.
I want to thank my sister for her idea to take a “Masterclass” in writing. I’m going to spend some time on this and see what emerges. The blog can’t be my only channel for writing, so I’ve put a plan in place to teach myself some actual book-writing skills.
Finally, I’m taking the pressure off with multiple translations- people have AI and Google Translate and can follow perfectly well if they choose to. It was a load I don’t need right now- sorry for that but for my neighbours I will try to keep the Hebrew mostly going.
