Khadijah’s Emergency Fund

Hi, my name is Galaan Hayle. I am fundraising on behalf of my partner J. Khadijah Abdurahman.

You may know Khadijah from her role as an Editor-in-Chief at the Logic(s) magazine, a Black x Asian x queer magazine about technology and society. Or you may know her from her work on We Be Imagining, an initiative applying the Black radical tradition to developing public interest technology. Or from her organizing work in Brownsville, Brooklyn to support political education, organizing, and mutual aid with those most impacted by the New York City Administration for Children’s Services (NYC ACS). Or simply from her Twitter account UpFromtheCracks. Across all of these platforms, Khadijah has continued to bridge siloed disciplines and activists, using art, technology, and community networks to combat harmful systems of surveillance, exclusion, and exploitation.

Since June 7, Khadijah has been sick with excruciating and almost life-ending pain, continuous swelling/edema, and a partial loss of hearing. It has been a whirlwind of a journey getting any care or diagnosis, including attempts to receive care in Ethiopia, India, and now in the US. After arriving in the US, Khadijah was deeply unfairly treated and dismissed by two hospitals before arriving in the current hospital in the Bronx, NY. So far the diagnosis she has received is bilateral kidney infection with strong signs that the infection has already affected both of her kidneys, liver, and pancreas. Her infection has not responded to any of the antibiotics. Now, she is on round-the-clock pain management. More diagnostic information is hopefully yet to come.

As we wait for a more certain treatment plan and a diagnosis of what may have been causing the ever-growing infection, the expenses are adding up. This includes hospital bills but also a big part of the expenses are 1) managing a household of 5 children in a different country 2) all our children are disabled and in need of significant medical attention themselves 3) my accommodation close to the hospital and cost of food and transportation 4) I too have several disabilities and need expensive medication to manage.

While Khadijah is typically paid by Columbia, supporting the size and nature of our household always required her to do extra work and speaking engagements which are not possible at this time. As a PhD student at UCLA with no summer funding, my financial abilities are also running out. At the same time, there is so far no end in sight for the current hospitalization and the kind of care and expenses that will come after an eventual discharge from the hospital.

With this in mind, our goal for the fundraiser is to help Khadijah and our family stay afloat at this extremely volatile time.

UPDATE July 29

We would like to start by first thanking everyone for their generous contributions! We have reached over 40% of our goal. It is all very appreciated and Khadijah feels very loved.

We have now been here in the US for close to 4 weeks. During this time Khadijah has undergone 3 hospital admissions and multiple appointments with a variety of medical providers. Unfortunately, the hospital admissions were basically unsuccessful as there was no definitive diagnosis besides the bilateral kidney infection and no medical reason could be found for the increase in weakness, balance issues, lymphedema and severe back pain. The entire hospital experience was extremely traumatic and disheartening as no one seemed to be concerned that a 35 year old woman who was walking normally six weeks ago was now dependent on 1:1 assistance and requiring a walker for ambulation. Fortunately, Khadijah met with a wonderful outpatient pain management specialist this past week who provided facet point injections to her back which will now enable her to fly home to Africa with greatly reduced pain. However, the physician predicts that these injections will only last 4 weeks and recommends returning for another round of injections at the end of August.

Khadijah also met with an outpatient hematologist who is working her up for some type of blood disorder due to her severe bruising due to the IV sticks and poor healing of her wounds. The hematologist was very concerned about her overall condition and recommended seeing a “super” neurologist - a Dr. House type who would be interested in taking on this very serious and complicated medical situation. In addition to the poor ambulation and unrelenting back pain, Khadijah is also experiencing intermittent vision issues, migraine headaches and intermittent edema in their hands and legs. She did see an outpatient neurologist who noted that the case was very complicated and not much she could do. Unfortunately, it is not easy finding a “super” neurologist on one’s own and we are currently seeking recommendations.

Insurance has fortunately covered the cost of ouptatient co-pays but the cost of the acute inpatient stays are starting to come in and total thousands of dollars. They were initially discharged with a wheelchair and just purchased a walker. The cost of staying in one country while the kids are in another continues to accrue and will again when Khadijah must return in 3 weeks for the facet procedure. Any contributions are welcome.

Update August 26

This is Khadijah, I am finally in a place to write an update on my own. I’m deeply grateful to all who have contributed financially and emotionally as I’ve gone through this harrowing experience. In some ways, I have dramatically improved. I am able to walk briefly without a walker, the spasmodic pain has decreased with Tegretol, an anti-seizure medication. However, the therapeutic dose leaves me feeling like the undead, unable to think and feeling like I’m moving through slush. Much worse than the opioids. So for now, I’m taking half dose and just coping with the pain.

Anyway, TLDR is that I have to travel to Boston mid-September to see what they call a “super neurologist” who cracks hard to solve cases. I’ve also learned that the last hospital I went to conducted the tests improperly so I’m optimistic this clinician will be able to figure out what my diagnosis/prognosis is. I’ve been told everything from I’m completely fine and just need PT to dying in a month from light chain disease so clarity is deeply needed.

I cannot travel alone so this doubles the cost of plane tickets and lodging. Additionally, I will need to pay for supports for my kids while I’m gone. Any contributions appreciated :)