Donation protected
Hi, I’m Jessica, and I’m a person living with disabilities.
I’ve been navigating a lifetime of complex and chronic illnesses. Over the past year, I’ve been diagnosed with several rare disorders, and I’m preparing to undergo neurosurgery to remove a tumor in my brain. It should be simple, and it should go smoothly, but my rare disorders may complicate the surgery and recovery. Having chronic illnesses and multiple rare disorders complicates my daily living. I have dreams and ambitions that I’ve had to set aside while I focus on everyday tasks like standing and walking, feeding myself, bathing, household chores, running errands and buying groceries. I have elaborate goals that include earning my masters degree in Human Factors Psychology once I complete my bachelor’s in Design and Dance - but first I need to finish my two year degree that I’ve been working on for more than twenty years now.
Things are hard. I am very uncomfortable. I experience chronic pain in my muscles, bones, joints, and nerves; chronic fatigue and unrestorative sleep; neurological and cognitive dysfunctions, including dysautonomia and confusion; sensory sensitivities to lights, sounds, smells, and touch. I’m a survivor of complex trauma. I have multiple genetic mutations that disrupt the physiological functioning of my body. I’ve had to chelate toxic heavy metals out of my body, and I’m currently experiencing toxicity from mycotoxins. I try to eat a healthy diet and take supplements, but my body isn’t absorbing vital nutrients. I’ve had chronic, long term, or recurrent viral, bacterial, and protozoal infections and diseases. I constantly get dizzy when I move my body in any way at any time. The last time I was in school, my right arm stopped working and hung heavy at my side. I had to write notes with my left hand. I couldn’t keep up, and I had to withdraw from school. Again.
I’ve been out of work on Disability since 2010. It was supposed to be “temporary” - “just until I get better”. Arguably, I’m experiencing the most well being of my entire lifetime in the past few years, as I’ve overcome decades of suicidal depression after intensive, extensive trauma work, and I have finally developed healthy relationships - with myself and others. I’ve done a great deal of healing, and yet, the disorders prevail.
Throughout my lifetime, I’ve yearned to achieve my goals. There are things that I haven’t been able to do; there are things that I may never do because I’ve never been well enough. What I have done, however, is manage to keep myself alive, which is no small feat. I fought against daily impulses to harm myself - or worse - and I’ve managed to develop this grace and grit that keeps me going through my life’s journey, laughing at the absurdity of it along the way.
Here’s an example: I was prescribed a medication for one of my rare disorders that took a long time to get approved by insurance. Once approved, it would cost $3113.70 for the first month and $2294.75 for the next month. But that would only take me through the end of 2021; my insurance wouldn’t cover the drug in 2022, and I would have to pay out of pocket: $186,652.92. For *one* medication that I may have to take for the rest of my life. That’s absurd. I haven’t taken the medication. I don’t know that I will. I managed to change my prescription drug plan for 2022, but my out of pocket expenses for medication are expected to be $30,882.94. Do you know anyone who has $31,000 a year to spend on prescription medication alone? I don’t. I’m not that person. So I don’t take that medication. There are a lot of things I don’t do that could be very helpful and lead to my being more functional and productive. But I can’t afford all those things.
And frankly, I’m not sure I want to participate in a system that necessitates $186,000 pills or employs important medical treatments and services that are “not covered”.
Being granted permanent Disability comes with Medicare as insurance, but treatments and medical care aren’t always covered by my insurance. There are treatments and treatment providers who are crucially important to my care. Yet, I cannot access all of the treatments and services that I need due to financial limitations. I simply cannot afford my own medical care. There are treatments that I don’t receive enough of, frequently enough, or haven’t done at all due to financial constraints. But let’s be clear: I’ve spent a great deal of money on my health.
Services I need are expensive and not always readily available. *And* we’re still living through a pandemic. I have more stress and strain and fewer services available to me. I am on a waiting list to receive financial assistance from NORD (National Organization for Rare Disorders) to help pay for medication. My sleep disorder wasn’t being funded in 2021 because they’ve received fewer donations for it during Covid times. Also, during the pandemic, I haven’t been able to take an online exercise class because I need to be closely supervised and receive hands-on corrections when my body does something it’s not supposed to do. I get one on one physiotherapy - not as often as I need to, as often as I can afford to.
So, I do what I can, and I don’t do what I can’t do.
I didn’t make this page because I’m expecting to receive enough funding from it to cover all of my expenses. Quite frankly, it’s embarrassing to explain that there are things that I need to be healthy that I just can’t afford. I’ve also received a great deal of financial support over the years from my family. I’ve felt ashamed of being a financial burden to the people around me, and I’m angry at the systems of health care that don’t actually provide adequate health care - and especially not for the people who need it most. I don’t know how to change all of the things that need to change, but I do know that just about everything involving health care in America needs to change. I’ve been advised a number of times to consider leaving the country to find health care in other parts of the world that do a better job of caring for patients, rather than generating wealth for those “in the business of medicine”. I haven’t gone that route. I just do my best to navigate the systems of care available to me in order to get the best outcome that I can manage.
Anything you have to offer is greatly appreciated, even if it’s simply taking the time to read this, even if it’s simply empathizing with me. On one hand, it doesn’t feel right that it should be someone else’s responsibility to take care of me, and on the other hand, it also doesn’t make sense that money comes out of my meager Disability payments to cover medical and prescription drug insurance - and that coverage doesn’t always apply to the care I need. I cannot abide such a dysfunctional system for accessing health care. I believe life makes more sense when all of us are supported to have our basic needs met. I have had plenty of help along the way, and I still haven’t had my needs met. At the same time, there are countless other people out there who have more troubles and fewer resources than I have. Let’s work to improve the systems of support that benefit all of us. Can you imagine a society where the resources we have are available to everyone and divided in such a way that everyone benefits?
Illness is not a luxury. Medicine is not meant to be a commodity. Humans who are supported to have healthy bodies and healthy minds are more functional and productive and cause less overall strain on family, friends, and their communities. I would like to be among the functional and productive members of society; I just have different support needs.
Thank you very much for taking the time to read this. Let’s all be well. Let’s take care of ourselves, and let’s take care of each other.
Organizer
Jessica Fisher
Organizer
Collingswood, NJ