I’d love to tell you I was away on some glamorous assignment, or dangerous one. But I wasn’t. I had been invited to a concert and I couldn’t go. Linda decided that we should go out to dinner to make up for that, with coupons we had from some time ago…but I couldn’t go. I did make it to the second farmers market this year, snuck it in. I guess there are the good days and nights and the bad ones.
I had a couple bad days, and one very, very bad night. I wish I knew how to describe a bad night; maybe like when you got food poisoning, that feeling before everything came out and you started feeling better. The knowledge that something is wrong in the body and for me, I have to hope that sleeping helps it, because being super-hot without sweating and a heart rate over 100, isn’t something a hospital can fix. It causes some suffering, and a lot of paralysis, so much paralysis these last few days, but it just is what is.
Bad days means the pain breaks through, or it hurts so bad I cry, or snap. It means I don’t know really much of anything, including what happened a few hours ago, but I try to be in the now and here and figure out how to help, if that is what needs doing. I don’t recognize anyone but Linda, and I just hurt, sometimes when waves of grey like concrete dripping and solidifying off my bones makes leaning against the wall all that I can do.
The minutes, the days, are what I said to Linda were what people say, just spending time together. Linda has an idea to put something on Amazon toy section and it sells in a day, I put something on and it sells in a day. It is electronic money and not ‘real’ but then what is ‘real’. Linda says not to worry, she ordered some pills this week, and I guess that means something. It means don’t worry. I try to figure out what day it is and when Christmas is, since I am still building up to Halloween. For me, I think it will be a Jan. Xmas, as I send out presents as I can, both in matching them up and writing. I look at the window and wonder if I will live to remember what the outside looks like.
It is raining, and I am scared when it rains. I just don’t remember why.
Every night I thank Linda for taking care of me that day. It helps for me to remember and her to know that I appreciate it. Thank you, anyone reading this who has helped me, or been there for me, or helped Linda, because I’ve learned that being alone and ill is really hard.
I have ideas, between the moments of pain in the bed. Ideas on how to start a business, or how to reach the people who are inside, and have no contact with others, wild ideas, ideas I wish I had the energy and hours and days to do. I had a dream of learning a sport with a long pole and a double blade at the end, it is sort of ‘neuropathy epee’ as you do rotations, and in a swing, try to peg the blade through the other person’s foot (they have special shoes). I wear a kimono with the long sleeves in this sport and I really enjoy it. I am learning very quickly and this annoys those who have been there for a while. I don’t understand the frustration people who must in their heart know it is a hobby have toward those who hunger to learn everything. I was smiling that wide grin, and I practiced and practiced with the blades between club meetings. I couldn’t get enough. It is the first positive dream I have had in three years, Linda said.
If there is something after this, some after-life: I hope I get to challenge myself, because that is what true joy is for me. I realize now why I never had peace. I thought I was cursed, to be like a mythic figure who is denied peace in the heart. But for me, to risk and challenge myself in every way, to focus my entire being within the limitations, seeking and learning new ways of excelling, in pain, with new callous’ or bleeding, that is what gives me joy. I don’t want peace anymore. I want to try, and fail and try again.
Not really the statement someone who has so much medication attention should be wishing. But I do, because failing, and getting hurt is part of being open to change, and challenging myself, completely, requires change. Here is to ‘change and challenge on earth’ instead of peace this season, at least for those of us who need it, and keep nudging the systems to show that things can be done better.
19 hours ago