Salma, Sherni, Arshi, and David survive & thrive

I, Salma Mirza, am 35 today. And I am asking for your help to live, survive, thrive, and fund my ability to continue to help others do so as well.

“it is better to speak

remembering

we were never meant to survive.” -Audre Lorde

I am a year out from (tw) being subjected to CIA torture techniques at a for-profit asylum. An asylum like the worst of the private prisons, publicly traded to enrich its shareholders with human misery. On my birthday last year I walked into my room to see the man who had sexually harassed me for two days completely naked, putting on my underwear.

I was there because I shouldn’t have been in pain after an outpatient hysterectomy, according to doctors. I didn’t need help. It was in my head. Because I was in pain and made the mistake of being unable to hide it. Because I made the mistake of having multi-system medical conditions that the western medicine system decides are a modern form of hysteria.

Friends, I want to fight for those I do not know. I want to help others learn how to advocate and navigate these systems and organize for our right to survive and thrive. But first I need your help to get stable housing that will not put me in anaphylaxis from which I can work remotely, and help pay for medical costs as I continue my battle to convince my insurance and the government that my life is worth living.

We need funds for DME, finger splints, braces, mobility aids, making a home accessible, preventing more concussions and falls, being able to work remotely from it and to be able to breathe fresh air. And funds so that I can turn my volunteer work as a peer/patient advocate into the organizing project of my dreams for all marginalized folks I’ve met in these dark institutions discarded by society for no crime except to be without a safety net, without money, without privilege.

I want to share what I’ve learned with others on how to get your things back from unethical movers who steal them, how to fight gatekeeping of prescribed medicines and vaccines, of how to use principles of personalized medicine to advocate for yourself and heal.

I cannot let others be discarded as we have. Please help us find stable housing, pay for our medical costs, and cover medical services as we face supply chain issues that have now had 3 pharmacies/home health care deny my doctors IV orders for me.

We’re doing all we can and the financial support we’ve received is at its limits. I am so ready to go to work training and organizer self/peer/patient advocates and organizers to help all of us who have been forgotten, but just need to be able to be safe and established with some stability as we have not had safe stable housing for months now.

Love to you all. I included some words from Meghan O’Rourke, who has similar conditions as me and a similar view of the failures of the american healthcare/western medicine model to grapple with multi-system diseases, perhaps they can convey some of the heaviness we have been facing that we so desperately want to focus on building up the joy and healing of our communities.

Meghan o’rourke

https://lithub.com/meghan-orourke-on-the-self-dissolving-difficulty-of-chronic-illness/

“One of the hardest things about being ill with a poorly understood disease is that most people find what you’re going through incomprehensible—if they even believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” Alphonse Daudet observes in In the Land of Pain. “Everyone will get used to it except me.””

…

​​For me the hardest part was not being comprehended, or not believed. “Physical pain does not simply resist language but actively destroys it,” writes Elaine Scarry in The Body in Pain. “To have pain is to have certainty; to hear about pain is to have doubt.” The same was true of all my symptoms, none of which could be seen.

In those months I was lonely in a way I never had been before. I could taste the solitude of the human body like brine in my mouth, a taste that never left me.

I was 36 [Salma’s note: I was 22, Charlie had to tell me] when I realized that not everyone in their twenties and thirties was in pain all the time.

“I can’t put this into clinical language. All I can say is that it was a bone-deep, a cell-deep conviction: that whatever was wrong was not in my head. The symptoms—roving neurological pain, headaches, flu-like aches, sensitivity to food—were too specific. And my lab work had so many small clues. Low vitamin D. Anemia. The many viruses.”

https://uk.style.yahoo.com/plight-invisibly-unwell-111500390.html?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAANPl5PtgRO3GhUwE9uBm7xvAKijec1gXGmgNJKq2LDPrw0rncZ47pD9RVoa8HWCYr1UyJ_x9TVLouvDJW0Whp-RlB7XqaWsz_ZU7ItpVPzMVuGIeWT8E8YNB9crimhXfp88iSKEfyBxtMZ-gZLSFz3xQ95NuSBkZ0N8Jrkj3vm94

“Trapped in a body that wasn’t working, I embarked on a complicated and obsessive quest for answers. I was met with both cutting skepticism and authentic concern from clinicians, friends, and colleagues. I tried many therapies and approaches toward healing during my search for an effective treatment, but in the meantime, the mysterious chronic illness I lived with got worse, not better, leaving me feeling almost entirely unrecognisable to myself.

We are all familiar with ubiquitous long-term illnesses like heart disease and cancer. They are well-defined and viewed as unquestionably “real” (even if much remains to be learned about them). But what is less well-known is that there is also a silent epidemic of chronic disorders that are often marginalised, contested, or even unrecognised—conditions that include autoimmune disease, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), post-treatment Lyme disease syndrome (chronic Lyme disease, as many patients call it), dysautonomia, mast cell activation syndrome, fibromyalgia, and now, on a scale that is only beginning to be recognised, long COVID. If every age has its representative signature disease, I contend that this type of chronic illness is ours.

When I got acutely sick in 2012, such conditions were poorly studied and rarely discussed—and often seen as manifestations of underlying mental illness. Marginalised patients who felt mysteriously unwell had to band together to try to legitimise their suffering. Close to a decade later, as I finished my book, The Invisible Kingdom, a year into the coronavirus pandemic, things had begun to look a bit different. Autoimmune disease is now a mainstream subject. Doctors are touting the importance of the microbiome and gut health, which not long ago was seen as a fringe idea. Most dramatically, the COVID-19 pandemic has given us a keen sense of how variable the human response to infection can be, vividly dramatising the ways in which a virus or bacterium can collide with an individual’s biology to unleash a host of perplexing aftereffects in the body, often incited by the individual’s immune system. The scope of the problem of COVID-19 long-haulers has begun to bring more attention to these chronic syndromes.

Even so, many people still suffer in silence with poorly understood illnesses, and plenty of medical practitioners continue to dismiss patients like me, whose symptoms roam the body but who have what appear to be normal test results. Doctors once thought of multiple sclerosis as a form of hysteria. Tuberculosis was viewed as a disease that afflicted romantic young souls—until scientists discovered the bacterium that causes it. For decades, certain forms of cancer were thought to be a consequence of repressed emotions.

Today, we like to believe that we are rational about disease and immune to this kind of metaphorical thinking. But research shows that these views are still endemic in medicine, particularly when it comes to poorly understood illnesses, which are often seen as symptoms of a psychological problem. While advances in our understanding of mental illness constitute one of the great successes of 20th-century medicine, patients with immune-mediated illnesses confront an often reflexive categorisation of their physical symptoms as mental ones—which presents a barrier to proper care and research. If medicine can’t see or name the problem, it can neither study nor treat it.”

The medical uncertainty compounds patients’ own uncertainty. Because my unwellness did not take the form of a disease I understood, with a clear-cut list of symptoms and course of treatment, even I at times interpreted it as a series of signs about my very existence. Initially, the illness seemed to be a condition that signified something deeply wrong with me—illness as a kind of semaphore. Without answers, at my most desperate, I came to feel, in some unarticulated way, that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again.

It took years before I realised the illness was not just my own; the silence around suffering was our society’s pathology. Eventually, after many ups and downs, I was diagnosed with late-stage Lyme disease and hypermobile Ehlers-Danlos syndrome, one of a group of inherited connective tissue disorders that can cause pain, fatigue, and dysfunction within the autonomic nervous system. I am not “better” in the way I once hoped I would be, but having found the doctors who knew what to look for, and having undergone antibiotic treatment for Lyme disease, I’ve returned to the person I once was: someone who can find joy in her life, someone who has the energy to write books and play with her children. Chronic illness, I now know, leaves a wound in you, one that changes your sense of possibility of health itself, even as it may be invisible to those around you.”

She suggested asking: “What can we do to make it possible for that person living with illness to get to that base of psychological well-being?” Such a question goes back to what she has learned about “accepting the illness.”

“You do at some point have to accept and build a new life,” she said.

“Diagnosis is not denouement,” O’Rourke said, tackling the messy nature of such illnesses — and of writing about them. “It’s a new beginning.” Asked what caregivers can do, she stressed the importance of recognition and acceptance. “Sometimes you just need to be seen and validated. You need a coach. It’s hard to do it by yourself. Some people need tough love, some need empathetic listening.

“The reason I wrote this book is to help people trust themselves and to give language to the experience so that family members and health caregivers can read it,” she said.