It's OK to be Gray

 

Today is International Asexuality Day. I’m thankful for all of the posts I’ve seen educating others about the asexual spectrum. I am neither allosexual nor asexual; I’m in the gray area in between. Since learning about gray and demisexuality, I’ve met many people online who are exactly like me. Not everyone wants to be labeled, but I find it helpful to have names for what, why, and how I am. It is a relief to call myself demi-gray, and I wish these terms had existed in my youth so I could have used them to describe to countless critical people what they did not understand.

I’m not big on “pride.” I don’t like public attention. I’ve never attended a parade or waved a flag, but I fully support all who want to do these things (and maybe I will join you in the future). What I want more than anything is for education and awareness to lead to better understanding, respect, safety, and bodily autonomy for Ace people. I am fortunate to live in a country where most people are not forced into intimate relations. Those who are will hopefully find help and healing through our advocacy.

For more info, start here: https://www.healthline.com/health/graysexual

In a world driven by a sexual urgency that I’ll never understand, I’m glad to be gray. I’m a safe space for every gender and sexuality out there, and somebody worth knowing. Aces may not want your body, but they are intelligent, passionate, interesting, cool, and have plenty to offer.

💜🤍🖤

Another HKPP Loss

Chovan Vic Cacho Banate founded the HKPP Network in the Philippines region. In the first week of May, he experienced a trigger which dropped his potassium critically low. He contacted the U.S. HKPP Network (my friend Ralph) and they spoke briefly about his symptoms, which had escalated into labored breathing. According to one of his friends from the Philippines HKPP network, he was taken to the emergency room in respiratory distress, where he was ignored while the staff was screening potential COVID-19 patients. He died of respiratory failure at age 35.

I don't know what to say anymore. When are we going to be taken seriously by emergency medical staff? Why would we be there asking for help if we weren't desperate for it? These travesties are breaking my brain and my spirit. It's 2020, Hypokalemic Periodic Paralysis has been documented since the 70s, and here we are. Another friend, neighbor, uncle, son, brother, advocate...gone for no reason.

The hospital is 100% at fault for this man's death, and they will never be held accountable. Tell me where the hope is in that?

Rest in peace, sir. I'm so sorry this world failed you.

Don’t stop talking.

On an ice pack on the couch.

Some days, I feel like no one will ever understand my pain. It is so difficult to put into words the feeling of your entire body burning, as if you’re being torn apart limb by limb, every muscle screaming head to toe in desperation. I just want it to end most days. That’s the ugly truth. The internet, as terrible as it is sometimes, is a lifeline to people who exist this way. I’m thankful for the advocates out there who still find enough words to speak out when the rest of us are too tired to do so. I’m not entirely alone in this misery, even though it seems that way when I’m feeling my worst.

Your voice matters more than you can imagine, so please keep talking about it. Being heard and treated with empathy and kindness is the only hope some of us have left.

My Big Fat 3 A.M Deliriously Sleep-Deprived Mental Health Video Blog

Another Periodic Paralysis Patient Lost

Kendra Rowan has died at age 33. She was a highly gifted artist. This is such an unfair disease and the loss of this young woman is more devastating than I can express.

I can only hope my obituary is half as nice as this one when it's my turn to go. As it states, Kendra was a volunteer at Common Art for the Homeless. In lieu of flowers, the family suggests donations be made in Kendra's name to Common Art for the Homeless. Send checks to: Common Cathedral, 15 Newbury Street, Boston MA 02116 (write "Common Art" in the note section). You may also donate online at http://commoncathedral.org/donations. Where it says "Add special instructions to the seller", write: "Direct to Common Art".

I'm so angry I can't stop crying.

I'm taking a break. I don't want to talk about this anymore.

Ride For Rare Diseases (Periodic Paralysis Advocacy)

Cyclist Gabriel Low is riding his bike across the country to bring awareness of Primary Periodic Paralysis! He can be followed on Facebook and Instagram. There are quite a few news stories about him on those pages, if interested.

I know this condition affects him and his family, and I'm glad to see that he is thriving in spite of it. People like Gabriel are making a difference for those who are battling rare and under-diagnosed diseases such as Primary Periodic Paralysis. I really appreciate his advocacy!

(Cross-posted to the medical blog)

To the self-righteous hypocrites and haters of the ice bucket challenge

Click to get to the article.

May you all take a break from your charmed lives to swallow this planet-sized serving of crow.

Have a nice day.