Help Lines recover from severe nerve disease

Short version:

My partner Lines is living with a severe chronic pain disease (Complex Regional Pain Syndrome), compounded with other medical conditions, and commuting/working in-person is no longer possible for them. They need help covering living costs and medical expenses while they undergo treatment, including intensive physical therapy, to both get their condition under control and to stop the disease from spreading further. During this time, they will also be enrolling in a coding boot camp as a means of gaining the hard skills required to be able to transition to a stable, fully remote line of work. With this help, Lines’ suffering may finally be able to end.

Whole story:

Lines and I’s relationship

This past year, I fell deeply in love with my partner and best friend, Lines. They are fearless, driven, and unnervingly smart, but also gentle, caring, and endlessly funny. It’s hard to put the nature of our relationship into words. We work as a team, while also honoring each other as individuals. We uplift, listen, share, and hold. I guess I could phrase it as gaining a new limb I didn’t know was missing.

The injury

Lines is 27 years old and should be experiencing and exploring the possibilities life has to offer at such a dynamic time, but in September 2022, everything changed when Lines sustained a severe, life-altering injury. They were moving what was going to be one of their sculptures for an art show - a 300 lb block of ice - when it slipped and landed on their feet. Their left foot was completely crushed.

About Complex Regional Pain Syndrome

Lines is currently living with Complex Regional Pain Syndrome (CRPS). CRPS is a neurological condition that causes severe and persistent pain. It is poorly understood, but experts believe it occurs as a result of a dysfunction of the nervous system such that the networks communicating pain become overactivated and effectively impossible to shut off. CRPS is the most painful condition known to exist in the world with no cure. Indeed, the pain is so excruciating that the ‘MacGill Pain Index’ (international pain rating scale) ranks CRPS pain higher than unprepared childbirth and amputation, earning it the title: the “suicide disease,” as this level of pain becomes unlivable for many. Another chilling characteristic of CRPS is that, if left unaddressed, it quickly spreads throughout the body. This has already begun for Lines, as their entire left leg is now affected and pain has begun to present itself in their right foot.

Before the injury

Before the injury, Lines worked as a lead finisher for a metal production company - a job that requires an immense amount of physical strength and stamina. They were active in their art practice, putting performance and sculpture into conversation. Lines also worked out almost daily and would go dancing on weekends.

Medical history post-injury

It wasn’t just the severity of the injury that led to the progression of their disease - improper medical care, wrought with gaslighting and oversight, was the key contributor. Following their injury, Lines was referred to a podiatrist who X-rayed their foot and identified only their big toe to be broken when, in actuality, their entire foot sustained breaks. Their foot was not dressed properly and it bled for 7 days consecutively, leading to lasting circulation complications. Aware that this doctor was not engaging in proper practice, Lines went to the NYU Hospital of Orthopedics, which referred them to a second podiatrist. Despite Lines communicating that they were in constant pain, this practitioner insisted they were ready to bear weight on their left foot. Unfortunately, this pattern of gaslighting by doctors remained a throughline in their care. Lines went to yet another doctor, who informed them that their bones were not healing properly and assigned them a month of bed rest. Upon informing their boss they needed to take an additional month off, they were unlawfully fired, effectively cutting off their source of income. During the follow up appointment after this month of bedrest, they were informed that they were in need of surgery or else they would never be able to walk again without assistance; however, the doctor refused to operate due to insurance complications. Lines - about to turn 26 and thus about to lose their insurance - had to find a doctor that would agree to operate on them on short-notice. They managed to find a doctor that was willing to do so and on January 20th 2023, Lines underwent reconstructive surgery on their big toe.

In the months following, the pain in their foot continued to intensify and they received an MRI. The MRI revealed multiple complications: bone and cartilage breaks throughout their foot, arthritis in both feet and ankles, the formation of nerve tumors, bursitis, and inflammation in their bone marrow. None of this had been identified by previous practitioners. This was also the point at which they received their diagnosis of CRPS. This diagnosis has since been validated by two other practitioners.

Current experience (pain and employment)

I watch Lines experience pain everyday. It starts when they wake up, and it doesn’t stop until they fall asleep. Outside of our apartment, Lines has to use a cane to help take weight off their affected limb. They currently work a lighting production job where they are often required to carry heavy things and stand for long periods of time. Lines also has to take multiple forms of transportation everyday to get to work, adding to the struggle of navigating the world with compromised mobility. These factors compounded are breaking down Lines’ body and causing their CRPS to spread. Something needs to change. Now.

Reasons for quitting their job and enrolling in a coding bootcamp

Lines needs and deserves to work a remote job that provides a stable income (as to cover the increased living costs associated with disability) and insurance benefits. If working remotely, Lines would no longer have to consistently leave the house and travel long distances, and they would have the schedule flexibility necessary for them to receive the medical attention they need, including intensive physical therapy. In order to make this career shift from their background in laborious production jobs to something remote, Lines has determined the best course of action available is to quit their current job and enroll in a full-time coding bootcamp. Why quit their job? It has rapidly worsened their physical condition to a point of being no longer bearable. Why a coding bootcamp? Lines has conducted several informational interviews and has gathered the stories of others who have had to make similar career shifts (typically following the onset of disability), and all of this research has converged to indicate that this is the best course of action to gain the hard skills required to qualify for the kinds of jobs they need to survive. For over a year, they have been applying to remote jobs that offer sufficient pay and benefits, but due to their lack of the relevant hard skills, there have been no prospects. A coding bootcamp would provide these very skills.

What we need

We are in need of the funds to enable Lines to quit their job, begin treatment, enroll in a coding bootcamp, and to provide a cushion as they look for jobs subsequent to the completion of the bootcamp. This cushion is necessary as they are unable to carry out any type of in-person work and remote work positions are limited. As mentioned before, disability is associated with a number of costs: medications, treatments, rides to doctor’s appointments, mobility aids, medical devices, etc. This only adds to the already high cost-of-living at a time where inflation has skyrocketed.

How you can help

Lines needs to spend this year focusing on reorienting their career path and their health. While there is no cure for CRPS, some cases have gone into remission; however, this requires an immense amount of time and dedication. Costs of daily life, medical expenses, and outstanding medical bills will continue to present a challenge until Lines is able to work again. Please, if you have the means to offer some help for Lines to get by during an extremely difficult time, I know they would deeply appreciate the support of their community. I would appreciate it too.

Thank you. We love you.