It’s 2:30 a.m., and I find myself deep in thought after reading a blog by another PSP patient – someone slightly ahead of me in this journey. He wrote about life with a PEG feeding tube. Two weeks ago, that idea wasn’t even on my radar. A week ago, my neurologist suggested it. I said NO way EVER (aka. Denial). That single conversation flipped my world upside down. I immediately changed tactics, making a 180-degree turn toward a ‘no-choke’ diet: thickeners, smoothies, soups – anything to keep me safe. I know this strategy will eventually fail, and I’ll have to accept the feeding tube, but I hope that day is far away.
This is the reality of PSP – an absurd life where you constantly adjust. Other things loom on the horizon: accepting a carer, using diapers (there, I said it), and countless changes I never imagined facing at 50. In truth, it happens to all of us over time, each in their own way.
Time bound objectives and detailed planning are simply impossible. The saying “Man plans, and God laughs” couldn’t be more true. Still, I have goals, and we should all have goals. A close family friend reminded me of a quote today: “If God puts a Goliath in front of you, He must believe there is a David inside of you.” That line struck me deeply. It inspired me to write down my goals – not time-bound, but guiding principles to keep me grounded.
Here they are:
- Faith – Maintain and grow my faith, remembering there is a greater purpose. Many have walked this path with courage and conviction, and I draw strength from that.
- Family First – Whatever happens, my family comes first. I’ll do everything I can to ensure they are cared for and supported. This isn’t about getting enjoyment from them – that’s a separate goal – but about making sure they’re more than okay in all respects.
- Purpose – Continue finding meaning through writing, especially about my PSP journey and thoughts on faith and other topics. If my story helps even one person, that gives me purpose. Writing has become my second career, and it connects me to others in ways I never expected (and gives me huge inspiration and pleasure).
- Positivity and Joy – Enjoy each day as much as possible: time with the kids, chess, Netflix, smoothies, naps, audiobooks, yoga (yes that’s here:-)), chats with friends, and, yes, blogging . These small joys matter more than ever, although the exact items and methods will shift as time progresses.
- Dignity – Not luxury, but dignity. I want to be treated with respect, not as a burden or a “they.”
Five simple goals. I’ve thought about setting deadlines, but I won’t define my life by time-bound objectives. I plan and pray to keep writing for as long as possible, to see all my kids marry, and as many happy events as G-d will allow, and to experience many more moments. Those are plans – not goals.
I’ve thought about how taking ultimate precautions figures here (avoiding choking, falling and keeping up exercise and yoga). These are fundamental requirements to achieve the above, not goals themselves.
So will I ever write a book – as people often suggest? I hope to. But it’s not one of my goals. Right now, it’s an idea that sits under goals 1, 2, 3, and 4. If the time comes, I’ll embrace it, but for now, I’m focused on living these goals every day.
What have I missed? I will of course reserve the right to rethink, but I think the point of goals is relevant to many of us as is the idea of shifting tactics and plans, without which we may just face either disappointment or massive underachievement.
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