The pendulum swung too fast, good and miraculous from a medical stand point, a person couldn’t ask for anything better. The emotional and mental toll has been much different. I am happy, I feel good, I feel grateful every second. But I have lost my footing, I feel so completely different that I don’t where I sit within my on life….it is such an odd and very strange place. Its almost as though I’m having one of those out of body experiences where you are watching and looking at your life play out, as much as you try to get back into it, you can’t. I feel like I’m floundering, yet I am working hard on the things Im currently involved with but am not taking on anything new.
I don’t know who I am or what direction to take myself. Walking, and walking a lot every day, It feels so good, yet at times it feels like my body is in a race with itself. It is a surreal feeling, to be me and not me all at the same time, trying to get to know and understand this body and brain that are behaving very differently than in recent years.
There is blue print for me to follow no guidelines, when I got my diagnosis, I was told the expected time is 3 to 8 years life expectancy after diagnosis, told to get my affairs in order, but the recent events that have brought about such a unexpected outcome, that changed how my whole system is working, there are more unknowns than knowns, for myself for my health care team, but it means I am adrift. Someone can say well just enjoy it, a believe me I am trying not to take a second of it for granted, but I’m doing all the while trying to understand this very strange and unfamiliar vessel that houses me.
As I try to navigate this I hope everyone knows I am doing the best I can from this very different very new place.