I am, as usual, reading all of this backwards…sorry I got a bit distracted when alto mentioned he might not stick around. Now he has set me off.
Thanks for thinking of me as part of your community. You know I feel the same and why but I’ll tell everyone else because I think it is time for some “thank you’s” even if I don’t know to what you are responding just yet. I’ve spent the day photographing a Great Egret catching crawfish in a creek behind my house so everything feels magical and yet not at all magical but just like life. And I realize that there really isn’t a different between magic and life on the best days, in the best moments.
The egret stands in the creek. He watches. His neck rises and lowers and twists and goes under water. Up it comes, its beak lit by sunlight. The crawfish twists and wiggles but is doomed. The egret walks, his long legs lift awkwardly above the grass and rocks, a snake slithers past but he ignores it and he stops. He watches. His neck rises…and it happens again and again and again. Just me and the egret and the water and the crawfish, the sun and that darned snake. What an incredible few hours! Toorrow it will be 60 rather than 80. It will rain and there won’t be sun. And so it goes…as the great Vonnegut wrote.
So stream of thought:
I came to Medium in early 2015 by accident and wrote a response after reading an amazing story and I am sorry I don’t even remember who wrote it although I remember vividly what it was about. And it was on a Sunday. I had the New York Times on the table before me. It was the first time I had been downstairs to read it and try to work the crossword since 2012. I never opened the paper or the magazine. I read the story on Medium on my phone. I cried and I started writing a response. My husband stared at me. And I wrote and edited for four hours.
I don’t do Twitter or Facebook or any other social media. I tried Facebook for 3 days. It sucked. That was enough. If I had thought of Medium as such, as I do know, I’d have written not a thing. I’m glad I did so there is good sometimes in not thinking. And I couldn’t think.
I was facing another year of what began in 2009 as a flare of my Lupus. Then something went terribly wrong…as if having one’s Lupus flare isn’t wrong enough. From 2011 until even that day in early 2015 that I read my 1st Medium story, I mostly stayed in bed in a guest room with my dogs. All day, every day, all night, every night. Except for doctors’ visit and tests and shit because it was all shit. I was on Fentenyl patches after trying Oxy and Morphine, slow release and fast. The pain was unbearable. I had lost 57 pounds in 4 months. I hadn’t the energy to talk which is something because I talk a lot. And in all that time I was I was isolated from everyone but myself and my husband except I was isolated from him, too. I couldn’t think. Since I was tested with 2 second graders in every class in the Houston Independent School District for some silly IQ thing they were doing and I got the highest score, I have felt about my intelligence the way most women and girls are said to feel about their looks or, when older, their children. Throughout my life, I will admit, that it is only when the things I believe are most important to me are lost that I find myself. But this was stupid.
Something was wrong with my brain. That was new. Well, it was new in 2011. It wasn’t so new by 2015 but it freaked me out every day. And while I am an introvert and crave alone time, enough is too much. I couldn’t read and I typically read 5 to 7 books a week. I couldn’t write and I have kept a daily journal since the 3rd grade and written more daily, as well: poems and short stories and well researched articles. I couldn’t remember anything. I couldn’t walk, eat, go anywhere. My faithful companion of 18 years, my beloved dog, who lived his life to love me died in December 2014. His photo is “me” on my profile. And during every flare I have had since my father died, no one in my birth family acts as if I exist because they, well,they are who they are and we are perfect and I am not. Uh-huh. So I was right alone. And then suddenly that January day I engaged. Huh? My husband was intrigued and rather happy. (Was it the new medicine?) I worried what I wrote didn’t make sense. And then I got a response from the man to whose story I responded. And a couple of others.
I read more on Medium. Thanks to alto’s moving story about David’s death, about the actual day he died and the days leading up to it, I discovered the cause of every one of my “new” symptoms. Alto’s story, the 3rd or 4th I ever read on Medium after Amandine Kaye’s breathtaking story of her upbringing, gave me the greatest gift. It explained, even so that my muddled head got it, the “something” that the doctors couldn’t figure out about this Lupus flare (“this” because it still goes on and I will live with it for the rest of my life when I used to go into remission before but won’t again after being ill for THIS long). AFTER 4 YEARS, thanks to alto’s story, I realized that my endless flare was complicated by starvation. And I still get pissed off just thinking about it. I mean it isn’t as if we can’t afford insurance and doctors and “the best” blah, blah yet they couldn’t figure out I was starving? In 2014, they’d (7 of them) misdiagnosed me with 3 fatal illnesses, referred me to Hospice twice just in that one year. Even in my haze of malnutrition and dehydration…you’d be horrified to learn what not eating and drinking does to a human brain…I was able to read David’s symptoms and recognize them as mine. Honestly, this sounds over the top but I promise that alto saved my life! I almost danced that day and usually I fainted back then if I just sat up.
It has taken me over a year to gained 14 of the 57 pounds I lost. It is way harder to eat than it ever was to lose weight. And I kicked the Fentanyl which, because I’d been on narcotics for pain since 1997 was no small feat. I have only two vitamin deficiencies left and I am still working on the dehydration but I’m better and will be better but never well. But thanks to alto my brain is working. I’d be dead if I hadn’t read that story, I swear.
When I inquired of a doctor why no one had ever thought about malnutrition considering my weight loss and the fact that at every visit, I the former foodie always worried that I didn’t eat, he told me that they don’t “do” nutrition in American medical schools because who doesn't eat? And I thought about the kids I had worked with whose parents sexually abused them and some had money and some didn’t but when you think it is OK to have sex with your own children you don’t really care if they eat. And I thought of the children in areas all over America who don’t get enough to eat and how do they sit in school and think and not feel inadequate? And I think of Flint, Michigan today where saving a few dollars or a few billion, I don’t know or care, meant more to some idiotic, immoral Governor than making sure children and adults had water they could drink because I am sure he hasn't gone without water or a bath or clean clothes and anyway, it isn’t as if it is people like him. What the fuck?! And I thought about the kids growing eating led paint because they are poor in Baltimore and Chicago and Houston and every city where the White landlords buy the houses and get out of abiding by the laws that make sure the lead is gone before renting the houses to the poor and I was and I am pissed. And don’t you think for a minute that they all won’t be sorry I have my voice back.
Then I read alto’s story about sharing a meal a year or so after David’s death…if I recall the time correctly. Actually maybe I read them both here because this will be much shorter if you read the stories. But I had an ally! I wanted to kiss him. It is a masterpiece:
And maybe it won’t mean the same to anyone else but to have someone stand up and say, “ If you are a friend in more than name only, “I can’t deal with it” is never an option. Sorry, it just isn’t.
Otherwise, please take up space elsewhere, preferably somewhere that does not see you return. And if you do return, as I have seen a few of you try to do, in some search for a non deserved redemption, don’t expect it from me. Very simply, you are too late. Enjoy the baggage.” is something everyone who is chronically ill wants to say to someone and usually more than a few and that’s just sad and wrong. But he said it even after David was gone and he didn’t have to except for: integrity. And alto has that unlike that damn Governor or those landlords, et. al. It was like manna from heaven to me. Being chronically ill means, among all the obvious stuff, that people too often project their shit onto you. Mortality. Illness. Weird shit about their feelings. You become something less than human to them to make them feel good about themselves.
And like alto I’m always the strong one, the one people come to when they have problems, or is there to care for their kids and get their groceries but where are they now? You may be glad to know that I’m in less of a state of self-pity now, at least most days, but I was angry and here was a guy who was saying things I felt! I love him for saving me with David’s story and his own integrity and I love me for saving David in a way because his life means something still. It saved mine.
Community: that’s what I loved about Medium. And the honesty and integrity I find here. I didn’t come to be discovered or because of the algorithms because they really suck in that I have to look for the new work of people I follow, although I do see their recommendations whihc are great but I want to read them! And because I am a poet, I despise that I can’t format my poems because the format is part of the meaning. I came to Medium the same way that I ran across the stories that have meant the most to me the same way I came across the Great Egret fishing in the creek behind my house today the same way I have come to some of the very best things in life: by accident.
Tim Barrus was maybe the 4th writer I found. He scared me, at first because I wanted to slobber his work with hearts and he told me not to. Drat! I worked with sexually abused children and I missed it but I was glad I wasn’t doing it, too. The people who were “saving” these kids talked about them as if they couldn’t be saved and in my state CPS’ mandate is to reunite families and when someone is screwing their own kid who is between birth and 10 are they fucking nuts? And not once did I ever see anyone besides two detectives try to give those kids their own voice. And me. It drove me nuts! Finding my voice healed me as it is healing me again. Tim not only teaches his kids to use words and video and cameras, he actually lets them write their own stories! And his stories are as honest as they come. Scary honest, the kind of honest one has to be to get through a rape and PTSD and abandonment and chronic illness and that’s all me. Either you live or you die. And there are plenty walking dead. Tim and alto live. And they helped me to live.
And so did the others I began following really early: Timothy J. O'Neill and I can’t even describe his honesty and creativity so won’t try except to say I am jealous and I don’t get jealous. And the kind, deep and funny Kel Campbell and Todd Hannula who have the largest hearts here, I am sure, along with Sherry Caris, miranda deely and Camille Wilkinson. And the precisely honest and talented Emjay Em, the bone chillingly direct Thaddeus Howze, Daniel Johnson, Joel Leon. who just all blow me away. And the powerful man of men who can’t spare words, John Fisher. The very witty and poignant Kyle Freeman whose grief for his dad opens my heart and reminds me of my love for my father. I bet they sit together and talk about us in the hereafter. And I am leaving out so many, I fear, but I’m only hitting my first few months. And I thank you all from Hana Leshner and Veronica Montes to “my” Smash Street Boys to David Montgomery who all steal my heart. And to Chanda Prescod-Weinstein who intellect and courage are my example and who teaches me how to be an ally without being an ass along with others…and I’ve got stories coming to prove it, thanks to you all, right Emjay and Allan? And Myddera and Spencer Ortega and to all who have become a real communtiy to me when I otherwise had none. Thanks! You probably don’t know me but thanks because your work helped save me, too.
One can read a lot when one can’t get out of bed, you see. So now my community expands. And I read the most amazing, creative art of all kinds and I am amused, Gutbloom and Morgan Rock Loehr and amazed, Clay Rivers and Deborah Foster and John Metta and Angry Staff Officer and engrossed Tom Farr and again because he engrosses me so often and in so many different ways, Timothy J. O'Neill. And again to she who still knocks my socks off faster than anyone ever has, Amandine Kaye. Girl you had better still be writing somewhere! You have an angel’s voice hoarse from evil and rising from ash. I love you! Again, you may not know me, but you, all of you, helped save me. As do all of you I followed later. I learn from you all. You are kind, thoughtful, engaged people. I stand in awe of you all!
I am again thankful to alto for the shout out and, for Jennifer Smith who I think began this: I am sorry if you think I’ve lost track of your story or of my own mind but I will read it backwards and I will read it on purpose. I follow you, too and love your work!
I understand that I am one of the few who came to Medium by accident and one of the few who has never checked my stats. I will one day. I’m not without ego. But, for now, I don’t care who reads me. I don’t care if I am read. I just want to read and respond and learn and shine in your light. I am not going anywhere.
I know that I am not the only one left speechless, even breathless at time by the art, the lack of self deception, the beauty, creativity and humor, the humanity. These past years have been hard and lonely for me. Now I feel I’m coming home from a pilgrimage because I am. Medium is sort of my extraordinary hostel at the end of my 500 mile walk where I am gathering myself to go forward, on with the rest of my life surrounded by this amazing community of creatives all urging me on. Thanks for giving me life and light again. I needed it and I hope to return the favor. Thanks for carrying on like that egret and life and me.
I don’t know why people are talking about going but c’mon: not just yet, please! I’ll miss you!