After the Jewish Sabbath ended – during which I do not use my telephone or PC – I spent some time catching up reading updates on a few PSP Facebook support groups. One anonymous post was so raw and emotional it really hit me. It was from a daughter about her father who is getting worse. Many hours later, after a short restless sleep, I realized that last night I fought – yet again – one of my ongoing and toughest battles with PSP.
It wasn’t against any of choking, vision, falling, freezing, or the pain caused by rigidity. It wasn’t even against the frustration of sleeplessness or the annoyance of a puree-heavy diet that keeps me, hopefully, from the clutches of needing a feeding tube. It was the mental battle.
Not to sound overly dramatic, it was a fight against my own demons – the thoughts that whisper how hard this is. Fighting a disease that is so vicious, without any treatment or medical hope, and which progresses week by week, sometimes day by day, feels like battling impossible odds, not knowing what the next cruel instalment is but knowing it is imminent.
This, I believe, is the hardest part of PSP – and perhaps of many similar conditions – the mental battle.
It took hours of inner dialogue to recommit myself to fighting with all the energy, conviction, and yes, even noise, that I can muster. The fact that I’m writing this now means I’ve won last nights’s round. I’ve always considered myself a positive person, but if I can sink this low on more than irregular occasions, then I guess most of us can – patients, caregivers, loved ones, all of us.
I need to remind myself that while PSP is truly awful – and I am genuinely scared of what’s ahead – it doesn’t have to take over my mind and cause even more needless damage. I will do everything I can to hold on to the good things in my life: my family, my friends, and the many happy moments still happening around me.
I’m choosing to share this bluntly because this is the real battle I think many of us are in and I want to point out that from time to time it is not as easy as a bowl of meat sauce. Churchill said it best: “When you’re going through hell, keep going.” I’m not in hell right now – not at all in fact far from it, but when my mind does wander to dark places – and I know it will continue to, it feels unpleasant and I can’t sugarcoat that.
My learning from last night is I need to push through the dark and give my faith and logic a chance to kick in.
My faith tells me there’s a reason for this, even if I don’t understand it. My logic reminds me that I have far too much good in my life, and to look forward to, to let the darkness win. I truly believe both truly. Still, it’s hard – hard to know that at 50 years old, I’m one step away from a feeding tube or worse. It just is hard.
There are people out there who seem unshaken by life’s challenges – and yes, there are those who are braver than me. I’m a person who is positive in general but also at times emotional, prone to occasional introspection, and frankly, human. But that doesn’t mean I’ll let this disease break me. I’m always looking for the upside and the opportunity, and tonight was a reminder that I have the strength to pull myself back – and I’ll keep finding ways to do it. I need to do more to avoid falling into funks and more to get out of them quicker. Ideas would be welcome – but only real ones, not the famous “why worry?” point of view, which is logical but of course not what my head is willing to hear on so many levels.
This is tough – truly tough – and I imagine it will only get harder as my ability to communicate and write diminishes. If you’re reading this and feel the same, I hope you can dig deep too. Even when the fog creeps in, we can still fight back – and that’s something worth holding on to.
