Help Malaina Recover and Survive

You all know may know this incredible person as Magdalena Squalor from the famous queer 90's novel Valencia by Michelle Tea, her friends love her and know her as Malaina.

Malaina is easily one of the warmest people I’ve ever met. By easily, I mean it’s easy for her, in her cellular presence. It comes right up out of her pores, blankets a room like a breeze from a western window. But there hasn’t been a breeze that’s reached her room in nearly a year.

With a condition as ferocious and baffling as ME/CFS (https://www.health.ny.gov/diseases/conditions/me-cfs/), the government programs fail everyone who needs them. Last summer the disease came for her in such a vicious incarnation, she laid in bed for the better part of 9 weeks. It arrived with a vertigo so extreme, it required a blanket over the window, dark glasses, a mini fridge beside the bed for food proximity. No one can move a head like that, each turn precipitating the vile spin of the world, the way you fall right through the floor to no place. Light hurt. Sound hurt. Her eyes would not focus. She told us the feeling of her toes touching each other was causing intense neurological pain as she tried in the dark to position her them in some impossible way, the hope that a ceasing of a pain she’d never imagined was across the room somehow, across the moment.

And that was just one thing. For nine weeks. A whole life of just darkness, and strange relentless pain, and spinning. She watched her days of friendships and work and pleasure and outside spin away.

Malaina has worked within the system during her functional hours, and her friends have helped. The stories of trying to access help from our systems have made my healthy toes curl, my throat close. The knowing of intimate details and exactly how our system punishes poor people, sick people, and incinerates the space in which they overlap feels nauseating. The social safety net we think is out there, remains unreachable. Malaina is a person who worked with non-profits and understands what resources are out there. It made no difference. It would take weeks to feel well enough to make calls, and when she did make calls, the answer was almost always no. No assistance, no help to live indoors, no disability pay, no legal help. Even the waiting lists that take years are closed.

She told us that while she is not able to care for herself, she’s only eligible for food stamps and medicaid. While grateful for both, she still cannot work, has had no real income for 12 months, and the lesion on her brain demands still more rest, less stress. Some days she cannot even sit up, let alone talk to Susan on the phone at the agency for hours with more depressing “No”s, more dead ends.

Healthcare in our nation can no longer be called a system. It is a mirage for legions of people, including Malaina. And still, she never wanted to do this: Ask people to send her reserves until she can recover. She knows we are sending our money all over the place, and she knows help is needed on every front.

So instead, I’m asking. A small group of people are trying to help Malaina remain housed, remain near her family, remain mobile and return to health. She is making progress in trying to get more help, but there is a gaping maw of time between now and then. Anything you can do to contribute to her safety is deeply needed, and deeply appreciated.

A team of friends put this fundraiser together. Ginger did the legwork, Sara wrote the text, Isis got everything on line. We would love to see this fundraiser reach $60,000 - enough to live for 3 years on $20,000 a year. Please share with your community - we are doing are best to get this out there far and wide.

Also, Malaina started a website with links to her crafts and antique sales. It is her long-term goal to record a podcast. www.hollerloud.org to purchase art books, collage packs and other goodies or to sign up to hear more about the podcast.

Thank you so much.