u/Pineapple_Empty

I am disabled and have a charity website as a small project I do while stuck in bed. I don't know the longevity of the project or my long term access to donations, so now that this $200/year Squarespace site is renewing soon, I don't know if I want to commit. I've been using it for like 5 years, but I just don't know if I will have the funds this time next year to justify that price again.

Is there another place I could maybe jump ship to that is considerably cheaper, but still lets me build websites with coding knowledge? There isn't too much going on in this site, but I do like how it looks.

www.giftsforme.org

James sent me his ME/CFS poem a year ago right before he became too severe to look at his phone for a whole year. I used his poems to write the lyrics for a song I spent all of last month writing. I spent all of March setting lyrics from a poem book he sent me last year to music, and then had a vocaloid like Hatsune Miku sing what I wrote, then chopped up those recordings to make a gritty club rave.

I don’t know if he even got to listen to the song after I sent it to him at the start of the month before he died. It’s such a brash song, but getting to work on music with his art was so impactful for me and it gave a lot of meaning to what ended up as my best song yet.

I don’t know if it was suicide or complications from our disease, but I was rooting for him so hard after he went offline. He was around for a week at the start of the month, reposting things that made him happy and his old life as a touring musician.

I hate this disease. I didn’t know when I wrote that song I’d be writing a euology for a wonderful and intelligent person the world is now missing. Now he is dead.

I was already planning to use his poem book as lyric inspiration moving forward. Now, I want to continue using it out of respect for his time here and the inspiration he gave me at my worst last year.

Truly, rest in peace to a wonderful and intelligent man. Fuck you, ME/CFS.

~~

Tl;dr - James sent me his poem book “Unsung” last year, and I wrote a song with it about a month before his death. Not sure if he got to hear it, as I warned him it was an over the top rave song. I wanted him to at least know how impactful getting to make music with his poems was. I plan to continuing honoring him by using this book throughout my life.

If you can tolerate the song, this is a link to it. I an still working on releasing. It’s loud and crazy, though: https://www.dropbox.com/scl/fi/5c78jhia58t2imthuccvp/The-Club-in-my-Pillow.mp3?rlkey=h8br96xyncrl9dta9fqk1mmmf&st=4mmixbiz&dl=0

Form: https://docs.google.com/forms/d/e/1FAIpQLSejXsd2ESeTnaCItrFRo3pQ2Bn2BajG7c1lbiXgWyLz4dWcGQ/viewform?usp=dialog

I made a short poll that will really help me out as I move into the next steps of setting up the registration process for my charity. You can either fill the form quickly, or respond in the comments with the number you'd choose for each slide. Example:

1
1
3
2
3

I am not sure I will be able to fundraise enough to do this again, so I'd like to make this as helpful as I can on the first go. If you are able to offer your thoughts, it would help a lot.

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Register to be notified when we launch here: www.giftsforme.org

The ME/CFS Clinic of MN is hosting a multi-disciplinary virtual clinic to help inform more practitioners about how to care for patients with our disease.

I know most of us have doctors that probably wouldn’t care about this, but please genuinely consider at least sharing this with them if you can. Educational events like this are often compensated for doctors, too. I will post again later.

If you would like to help make a template message to send to our doctors, please reach out to me.

More info: https://www.mecfsclinicmn.org/conference?fbclid=IwY2xjawRkUbBleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA80MDk5NjI2MjMwODU2MDkAAR5AWqMSMpTbsyMkPDe_k1Ef3QInEpyx5EzfMjQHEHb1aYHdLdBuvCMaKH8LYQ_aem_3lcozn87pxEKiRFeMoRiKg

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I’m impressed to see such a wide range of practices involved. Knowing Dr. Tam and how seriously she takes us, I know each speaker has a legitimate angle to share. She does not let GET or pseudo-science slide. You will likely note the inclusion of Dr. Perrin. As far as I have screened, she does not have a monetary relation to him, and simply follows her own results from 40+ patients and some of the treatment breakdowns that show lymphatic drainage is helpful. I think this is okay.