Becca's Wheelchair Fund

Hi! For those that may not know my name is Becca. I am a chronically ill autistic artist, musician, and disability advocate. Six months ago I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS ), a multisystem, complex, neuroimmune illness which causes a myriad of debilitating physical symptoms. Up to 75% of people with ME/CFS are unable to work, and 25% are consistently housebound or bed bound. I started this fund so that I can raise money to purchase a custom lightweight folding manual wheelchair, which can cost anywhere from $1,000-$5,000. Because of my many health issues I need a wheelchair that is easy to self-propel, lightweight, and custom fitted to my measurements in order to prevent injury from long term use. While my doctor has prescribed a wheelchair for me, Medicaid will not cover the kind of wheelchair I need. Due to my illness I have a limited income, and am only able to work part time from home. My illness is unpredictable as well, meaning even this small amount of income is not assured long term. This makes it impossible for me to save the amount I need for my wheelchair on my own.

In the past year specifically, my illness has progressed to the point that my mobility is extremely limited. For several months I have been housebound more than 90% of the time, and I have had many flairs where I am bed bound for weeks at a time. At this point I can only walk very short distances (such as from my bed to the bathroom) and any more than that can cause a crash where I may be stuck in bed for days or weeks. This wheelchair would allow me a range of mobility I have not experienced in a very long time. I am unable to go outside, do any activities outside of the home, and even struggle to make my doctors appointments. On the few occasions I manage to get out, it is at great expense to my overall health. With a wheelchair I would be able to have more freedom. I’m sure most of you know how terrible it feels to be confined to your home, something many experienced during the lockdowns in the pandemic. But this has been my life regardless of lockdown. Needless to say my chronic illness is not my only struggle. This has greatly impacted my mental health as well.

The symptoms I struggle with on a daily basis include chronic fatigue, cognitive impairment, headaches, muscle and joint pain, unrefreshing sleep, orthostatic intolerance, dizziness, photophobia, and gastrointestinal issues, just to name a few. My most notable symptom related to ME/CFS is post-exertional neuroimmune exhaustion (PENE, sometimes referred to as Post-Exertional Malaise). This hallmark sign of the illness causes extreme bodily exhaustion at the cellular level in response to any kind of physical, mental, or emotional exertion. This means that any time I push myself beyond my limits, I feel like I’ve come down with the flu (fatigue, brain fog, headache, muscle aches, sore throat, swollen lymph nodes, etc.) PENE should be avoided at all costs, because prolonged over-exertion can lead to a decline in health to the point of severe ME/CFS, where you can end up bed bound and unable to perform even the most basic tasks of daily living, requiring extensive in-home care while trapped in a prison within your home in excruciating pain. This is the reality of this illness. It is important now more than ever considering my illness has worsened dramatically in the last year, that I avoid PENE at all costs. Getting a wheelchair would allow me to conserve my energy in order to prevent PENE. This accommodation is essential for my wellbeing, and will help curtail further decline of my health.

I first developed ME/CFS in 2017 following an acute infection of mononucleosis. After I became extremely ill, my body struggled to recover, and as the months passed I began to develop many health issues. In short, I never fully recovered and was becoming chronically ill. In the first few years of becoming sick my illness was still somewhat manageable, although the damage to my body was steadily becoming more apparent. At the time, however, I didn’t know what was happening to me, and had never heard of ME/CFS. Up until that point in my life I was a very active person. I practiced martial arts and yoga regularly, went on hikes, and worked out several times a week. I was constantly on my feet working demanding physical jobs and creating art. After I got mono I noticed some dramatic changes. I went from being able to run several miles, to being short of breath climbing a single set of stairs. I started having heart palpitations and getting dizzy when standing. I noticed I became fatigued very easily, and realized I woke up never feeling rested despite sleeping 8, 9, or 10 hours. From 2017-2019 I was pursuing my MFA at SAIC in Fiber and Material Studies. The graduate level work was very demanding and was also taking a toll on my body. While my symptoms were more manageable at this point than they are now, I was struggling to keep up with the demands of school. I would push myself all throughout the week, only to crash hard on the weekends, resting in bed and sleeping over 12 hours a day to make up for my extreme exhaustion. It got to the point where many days after class I would be too exhausted to make the commute home, and I would crash in my studio, only able to make my way back after sleeping in my studio to regain my strength. I tried going to the doctor to get answers, and was told that my symptoms were psychosomatic. Somehow throughout all of this I managed to finish my degree, but it took a toll on my body.

I graduated, eager to start my life in 2019, only to find myself drowning with my increasingly debilitating symptoms. Around that time I was also diagnosed with autism and PTSD. Until now, I have struggled to find doctors who would take my symptoms seriously, and experienced medical gaslighting in addition to one dismissal after another. In 2020 I applied for disability but was denied. This is unfortunately very common for people with ME/CFS, which is a highly stigmatized illness in the medical community. It takes many of us years to be diagnosed. Thankfully, I have finally found a doctor who believes me, and identified my symptoms as ME/CFS. I am now seeking care from a number of specialists and trying to discern possible comorbid health issues that are currently undiagnosed. Sadly, there is no cure or even treatment for ME/CFS. According to certain estimates, there is only a 5% chance of full recovery. The only thing that can be done is symptom management and pacing of activities to prevent the illness from worsening. For that reason I desperately need this wheelchair, and the sooner the better.

Thank you for reading my story. Please know that any amount will help me reach my goal and regain my mobility. Even if you are unable to donate, sharing my story can go a long way. I am determined to maintain my current level of functioning so that I can continue to make art, music, and advocate for my community. While my illness prevents me from obtaining many of my previous goals and dreams, I still have plenty of life left to live. Hopefully that life will find me rolling around in my wheelchair in newfound disabled joy.

With Eternal Gratitude,

Becca

P.S. If you want to learn more about ME/CFS I encourage you to watch Unrest , a documentary about Jennifer Brea's journey with this illness.