It has not been an easy week for many reasons – PSP and non-PSP – but this afternoon reminded me why it is all worth it and why, despite the challenges, life is simply so special. And all it took was a bowl of meat (bolognese) sauce and a guitar.
My diet has been a mess since moving to a non-choking plan. I have fallen, I have moved downstairs, I’ve had a kind of brain fog, and freezing has kicked off again. But genuinely, I am happy, calm, and at peace at the moment. I don’t crave luxuries, but I am growing a little fed up with purees, oatmeal and yogurts (and soft scrambled eggs) and the water thickener is driving me mad. Today, I had a steaming bowl of meat sauce my daughter made – taken with great care, chin tucked, and with no pasta – and it was simply delicious. It went down fine. Now I am listening to her play the guitar, and it is just what I needed.
I am not expecting big miracles, but I am very grateful to G‑d for happy moments and peaceful times. I don’t quite know what is ahead for me and my family as we deal with the challenges PSP has thrown at us, but to have a quiet, peaceful, truly enjoyable moment is a great reminder of why life is so special and worth every ounce of struggle.
Of course, I don’t underestimate the challenge at all, and not every moment feels like this. Even today I have felt the full frustrations of PSP many times (rollercoaster in action). But I guess the message is: take the good with the bad, and savor the sweetness.
Thanks to all who are doing so much to help me – it is really appreciated.
