(no subject)
It's amazing the things a disease will change. Eighteen months ago, my life was about experience; no matter what it took, I wanted to live my life doing new and different things, going places, meeting people. Now, I just want to be as comfortable as I can get, and keep my pain and stiffness as minimal as possible.
I never realized that was a genuine alteration until my family decided we should go on a Caribbean cruise together.
Before, there would be no hesitating: I would just make it happen. The most important thing would have been traveling the Caribbean, visiting the islands and experiencing new people and cultures, and sharing that with my family. Money was, very literally, nothing compared to something like that -- not that I have ever had any to spare in a worldly, practical sense, but that I value it less than most every other thing; when I think about some of the best days in my life, the days that still make me happy, they are made up of people and culture, memories of places, and experiences that have made me who I am as a person (not a second is spent considering the money I could have or made abstaining from those opportunities).
These days, I'm thinking... A cruise? Seriously? That's about six months worth of prescriptions. And, when it's a very real struggle to scrape together money for medicine each month (and, just my pills, shots, and testing supplies; I won't be able to afford an infusion for awhile), that's a bigger deal than makes me happy.
Only... Here's the problem: What the hell good is it being comfortable if I'm not living life to the fullest? I don't want comfortable(ish) to become shiftless. I understand that there are certain things I want to do that I'm not able to right now, that I may never be able to do again, but I can't let that change my fundamentals. I have to reclaim and retain that passion for experience that absolutely controlled my life before I got sick. It may not be a Caribbean cruise. I may have to start small, a trip to a coffee shop, a festival somewhere, or even returning to old haunts in Chinatown on really good days. I may have to stay small, but I can at least do small more often.
I've always thought that life is a delicate balance of mind and moments. I've set my mind too long on what I need physically, and have neglected what I need metaphysically.
Enough of that.
I never realized that was a genuine alteration until my family decided we should go on a Caribbean cruise together.
Before, there would be no hesitating: I would just make it happen. The most important thing would have been traveling the Caribbean, visiting the islands and experiencing new people and cultures, and sharing that with my family. Money was, very literally, nothing compared to something like that -- not that I have ever had any to spare in a worldly, practical sense, but that I value it less than most every other thing; when I think about some of the best days in my life, the days that still make me happy, they are made up of people and culture, memories of places, and experiences that have made me who I am as a person (not a second is spent considering the money I could have or made abstaining from those opportunities).
These days, I'm thinking... A cruise? Seriously? That's about six months worth of prescriptions. And, when it's a very real struggle to scrape together money for medicine each month (and, just my pills, shots, and testing supplies; I won't be able to afford an infusion for awhile), that's a bigger deal than makes me happy.
Only... Here's the problem: What the hell good is it being comfortable if I'm not living life to the fullest? I don't want comfortable(ish) to become shiftless. I understand that there are certain things I want to do that I'm not able to right now, that I may never be able to do again, but I can't let that change my fundamentals. I have to reclaim and retain that passion for experience that absolutely controlled my life before I got sick. It may not be a Caribbean cruise. I may have to start small, a trip to a coffee shop, a festival somewhere, or even returning to old haunts in Chinatown on really good days. I may have to stay small, but I can at least do small more often.
I've always thought that life is a delicate balance of mind and moments. I've set my mind too long on what I need physically, and have neglected what I need metaphysically.
Enough of that.