The story of Ember
My story is one that is considered “unusual” by most, however, many people suffer from the same inequalities I have faced over my lifetime. My goal is to raise awareness of my and other stories that lay hidden in the shadows. May many more stories see light to bring peace to those who hold them.
I was born into an extremely poor family and my mother was also disabled. She passed away by the time I was four, and I was abandoned by my father and placed in foster care.
I know now that I possibly was born with another separate condition, but I have no living relatives to relay my medical history to me at 32 years old. I have relied on state assistance financially and through insurance for most of my life. Even as a child, I received sub-standard care due to originally having no insurance and eventually moving on to CHIP for children once I had enough medical issues. My options for care for my rare disease have been extremely limited.
There is an elephant in the room in the disability and rare disease community. Low-income people and those with government insurance (Medicaid and Medicare) often face astronomical barriers to diagnosis, treatment, and aids to enhance their quality of life because we are often viewed as a “financial burden”. Here’s my story…but know this is one of many.
I was diagnosed with Guillain-Barre Syndrome (the acute version of CIDP) when I was around 8 years old. I spent months in the local children’s hospital, eventually becoming paralyzed from the waist down, diagnosed with a Miller Fischer Variant and GBS together several months into my stay.
It took an extremely long time for a diagnosis to stick in the minds of the physicians. They couldn’t agree that someone as young as eight years old could present with the disease at all, let alone have as many comorbid health issues as I was having. All my test results very clearly showed GBS, from repeated lumbar punctures/spinal taps to repeated EMGs. There was a hospital in a richer area of my home city that had been dealing with cases of GBS/CIDP in children for many years. The hospital I was accepted into was the only one that would take me with my state insurance. They had no experience with GBS/CIDP in children. The larger research hospital denied the request for transfer because I didn’t have the “right” kind of insurance.
In the children’s hospital, nurses and doctors used unethical methods to attempt to get me to eat. This is just one account of many traumatic experiences I had there. I know now that my issues stem from dysphagia, swallowing, and esophageal motility issues–but I did not receive those diagnoses until my late 20s. Due to their lack of competence and care, the children’s hospital believed I was refusing to eat to get “attention”, at eight years old, while paralyzed from the waist down and in the ICU. The doctors and nurses would walk into my room, bring in a bag of feeding tube formula, and place it on my hospital bedside table next to an uneaten meal tray.
“Do you want to spend the rest of your life drinking formula like a baby? You need to eat. If we place a feeding tube, we are going to put it down your nose, and it’ll hurt.”
I was eight years old and terrified. My foster family rarely visited me once I was placed on a floor in the ICU. I was mostly just alone, with whatever nurses, doctors, or aides were in the hospital. And they were cruel because the research didn’t support, in their minds, that I could have the extent of issues I was having.
To say that I have suffered extensively under the hands of the medical business industry is an understatement. I was discharged from the children’s hospital with basically no follow-up care, no PT or OT, no mobility aides for the extent of the damage I had to my nervous system, and sent back to grade school as soon as possible. I never understood why I could not participate in gym class, why I could not run anymore, why I sprained my ankles and injured myself just walking up the stairs or trying to play with other kids. I never knew why I felt so sick all of the time, or tired, or weak…I was told I was “better” over and over.
As an adult, the mantra from my foster family that I was “better” and to no longer complain about health issues. The abuse I faced throughout my life from them and other family members, meant that accepting a diagnosis of CIDP as an adult has been extraordinarily difficult.
I have had health issues my whole life, but once I was abandoned by my original foster family in my teens, I was without insurance, homeless, and skirting the law because I couldn’t afford the legal fees of emancipation. The stress from trauma and survival tacked on to my mounting health issues.
By the time I was an adult, I already could not work enough hours due to my health to maintain medical insurance through a job. I was having debilitating muscle weakness, incontinence, pain, muscle spasms, lack of reflexes, that had been progressively getting worse. It wasn’t until I won a case with Social Security Disability at 20 for my complex PTSD diagnosis that I finally saw medical insurance and enough income to barely survive.
Because I was on survivor’s benefits as a child and applied before the age of 22, my monthly income has been between $750 and $800 a month for 12 years. That’s roughly $9,500 a year.
I was diagnosed, officially, with CIDP in 2017 at the age of 29, after presenting with symptoms since my teens. Due to receiving mental health care for a lifetime of abuse, sexual assault, and trafficking, I was often told before my diagnosis that I was having a physical response to the trauma I experienced. All a doctor or neurologist needed to see was the C-PTSD diagnosis and my state insurance and their hands were washed of attempting to seek a diagnosis.
When I started presenting with symptoms of autonomic dysfunction, a physician told me that just happens sometimes due to anxiety. My heart rate was racing up into the 190s during simple walking and my blood pressure began to drop upon position switching and standing, causing me dizziness and falls. Even still, I was fed the narrative that my trauma presented in a physical way in my body, and after enough therapy, I would be fine.
Over the years, my medical conditions progressed, and I physically declined. I sought out a wheelchair to use during long distances. Finding one without a diagnosis was impossible and I hit barrier after barrier. I no longer had the strength or mobility to walk long distances, and I could barely lift a ceramic plate. I became homebound for the most part, trying over the years to take college courses. My health would catch up with me, I’d end up missing too many classes, and I’d withdraw.
My legs felt like they were surrounded by concrete with every step I took, and it was taxing. Because I could only afford to rent a room in a house on my income, my options were limited to two-story homes with over 30 stairs. Sometimes, I’d come in the house from school or a volunteer job, manage to make it up the 8 stairs to the first floor, and lay on the couch and cry because I didn’t know how I’d get upstairs to the bathroom. A lot of times, I would lose control of my bladder before I could make it up the stairs. It was humiliating.
My swallowing issues increased, and I began coughing and choking while eating meals. Doctors told me I must have GERD without doing any testing. Defeated, I kept trying to trudge through the world. My chronic pain was astronomical and debilitating, but I had no diagnosis, so I figured I must’ve just been crazy.
It was around 2016 that I reached a breaking point. I struggled to cope with the pain, the “jokes” from former friends on why I wasn’t working after so much trauma therapy, or why I didn’t want to come hiking, or why I didn’t have the energy anymore when I was so young. I started researching the disease I was diagnosed with as a child, Guillain-Barre Syndrome, and I eventually stumbled on CIDP.
When one of the first things I read was that CIDP included a lack of reflexes, I cried for a long time. I had been experiencing that symptom for over a decade, and most doctors shrugged their shoulders and told me I was fine. When my progression of symptoms matched up with CIDP to a “T”, I began hunting for a neurologist that would work with my insurance.
I had to travel outside of my city to find him, but eventually, I found a neurologist with over 25 years of experience with patients with CIDP and MS who accepted Medicaid and Medicare. He is a unicorn, but I thank my stars every day for him as a person. When I walked into my first appointment, the gears in his head already started working, and he ordered immediate EMGs and lumbar punctures.
Not surprisingly, I was diagnosed through those tests, and while weight was lifted off my shoulders, I knew my battle would be uphill.
My neurologist wrote a prescription for a power wheelchair almost immediately. Finding a DME provider to work with my insurance, and a clinic to complete the seating evaluation was being quoted at a 4-year long wait time. My EMGs showed extensive demyelinating, axonal, and motor neuron damage. He or I could not believe the extent of damage to my body systems, and soon I was also headed to a urologist to finally receive a diagnosis of neurogenic bladder. By that point in time, the nerves and muscles of my bladder were so damaged that I am now faced with a lifetime of wearing adult diapers and intermittent catheterization, with an eventual probable progression to a permanent suprapubic catheter or bladder reconstruction. I have had suprapubic catheters and foley catheters on and off depending on the severity of my retention.
Early intervention is key with CIDP, and unfortunately, despite many visits to the emergency room, physicians, and specialists for concerning symptoms, it took an objective and skilled neurologist to complete the testing and diagnose me.
However, the disease had many years to attack my body, and more body systems were affected than I had ever realized possible. I now have issues with my breathing, my bladder, stomach and esophageal dysmotility, drop foot in both feet, chronic pain throughout my body, muscle spasms and rigidity, chronic migraines, chronic fatigue syndrome/ME, a diagnosis of autonomic dysfunction [POTS], and so much damage to my nervous system that I am paralyzed.
It took until 2020 for Medicare to agree to pay for IVIG, due to my status in catastrophic coverage. For January 2021, the new fiscal year for insurance companies, I am out of that status, and I am quoted at a price by my Medicare insurance that I could not even be told on the phone.
I am now facing mounting medical bills that are exceeding my yearly income very rapidly. Medicare began billing me on every 3-week infusion of approximately $1500 because they reversed a decision to cover an in-home infusion pump and any supplies related to it since IVIG is not a covered medication they believe should be used in-home with an infusion pump. They also began sending me bills for the coverage of my chest port, reversing the decision for that after a medical review board decided I could infuse just through peripheral IVs. The bills hang somewhere in the balance of $6,000 for the chest port alone. Just my 6 months of IVIG infusions have reached well over the same cost. Once again, my yearly income is around $9,500.
IVIG has changed my life and made my functioning, and quality of life, so much better, just after 6 months. I am no longer bedbound. I was talking to my significant other recently about utilizing vocational rehabilitation services and learning to make documentaries. I can sit upright again and not spend hours in a hospital bed staring at the ceiling.
The stark reality is, however, if I cannot find a provider that can work with Medicare and provide financial assistance, I will be forced to stop a treatment that is saving my life and slowing the progression of my disease. I had conversations with my significant other when we met in 2018 that I thought I might die young. Once again, I am back to discussing advanced directives, power of attorney, and what my medical wishes are with my significant other. I am 32 years old.
There are many more issues that stem from CIDP running amok in my body for years, including a diagnosis of loss of peripheral vision and visual acuity. I am now considered low vision or visually impaired.
For Rare Disease Day 2021, I hope that more awareness is raised for people who struggle to access care, struggle to obtain diagnoses, or struggle to maintain a good quality of life due to the medical industry’s role as a business. In today’s world, they do not exist for the betterment of the public—unless you have enough money to not be considered expendable.
My life has a price on it. My rare disease is considered “too expensive” to treat because of the astronomical cost of IVIG. For many years, the power wheelchair I was prescribed by a neurologist was considered “too expensive” and it wasn’t until my disease progressed into paralysis that it was covered.
I lost a friend in 2018, at the age of 25, diagnosed with CIDP and other comorbid conditions. I still believe he was weighed down by the fact that treatment was too expensive. Medicare stopped covering his IVIG, and eventually, after TPN failed, he chose hospice. He was 25 years old. No one at our age, with so much life left in them, should be considering hospice or making end-of-life decisions with their families when there is a life-saving treatment available.
In 2021, raise awareness of the fact that the medical industry is a business. And furthermore, it is a business that is so cut-throat that it will kill people that cost too much money in the eyes of insurance companies.
Disabled community members, especially those with rare diseases, are at risk for these tactics simply by choosing to exist in a world that is hostile towards us. We want the same rights, treatment, and quality of life as our able-bodied counterparts and often we have been declined those basic human rights because we are “expensive”.
And in today’s world, “expensive” means “expendable”.
Written in loving memory of all of those considered expendable and who have lost their lives when measures existed to save them. I will name two fierce disability advocates who were taken too soon: Carrie and Emet. Rest in power.
Image description : A midnight purple, Quantum Rehab, a power wheelchair is positioned on a hardwood floor. The photo captures the back of the power wheelchair, which is covered with multiple stickers about disability activism.
*Find others with CIDP on RareConnect, the online platform for people affected by rare diseases