Which I found out when I spent my sister's graduation ceremony lying on a hard wooden bench outside the auditorium. It really made me angry and sad and ashamed. My sister was angry. I felt like the (literal?) Grinch who ruined commencement. Worse yet, there was nothing to be done. I was already sitting down. I was already wearing 40-50mmHg compression stockings. I had already drunk the fluids and eaten lightly to build blood volume and avoid pooling, but in the end I still ended up on a bench with my blood pressure so low that when my father came to collect me, I didn't realize where I was at first.
I always make the mistake of planning too far ahead, or not planning far enough ahead. If I can twice a year, do something related to my work (writing) it's impressive. I wrote to a close friend. Oddly enough, oftentimes I see my true feelings for the first time when I reveal them to someone I truly love and trust.
I wrote: "Live and see as much as possible is what I want to do." That has probably been my goal since childhood. I've always nurtured an endless burning curiosity for everything. I want to read everything, know everything, experience everything. But I feel limited and small and insignificant. The people I go to for help make me feel like I don't exist. I keep trying to get my life out of the "get sick, go to the doctor, get rebuffed, get sicker" track, but it's damn near impossible.
I keep looking for that space where my passion and my fate come together. I'm sure I could be a useful human machine somewhere.
This past Mother's Day I thanked my mother for never having called me "pretty." She only ever called me things like "smart" or "clever" or "kind." She taught me which attributes were to be valued and which were not. I didn't learn to do my makeup until I was 21 and my hair was hopeless until grad school, but I have a terminal degree in my field and in the end I think I'm beautiful anyway.
2 comments:
That pic is adorable!
But I feel limited and small and insignificant. The people I go to for help make me feel like I don't exist. I keep trying to get my life out of the "get sick, go to the doctor, get rebuffed, get sicker" track, but it's damn near impossible.
I can't imagine how hard it must be to live with EDS but whenever I think about any obstacles in my life, I try to remind myself of this quote from Muhammad Ali-- “It's lack of faith that makes people afraid of meeting challenges, and I believe in myself.”
Good luck with your endeavors!
TT
Thank you, TT! Muhammad Ali had some outstanding quotes. I have some posted on my Facebook. Was anyone more witty and self-confident?
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