Taking Back Our Bodies’ Stories

Read the first installment of Elizabeth Land Quant’s new column, “Disabled Generations,” on parenting disabled kids as a mom with disabilities.

It’s a balmy, 72 degrees this Florida morning, and we’re strolling on the Disney Boardwalk.

Men and women in old-timey uniforms sweep the already weirdly clean trail that hugs the man-made lake, while families skip and run toward Epcot Center. I’ve got tea in one hand, the hand of my loving husband holding the other, the long absent sun on my face, and pee running down my leg. Shit.

I clutch my husband Shawn’s arm with one hand while I grab my own ass with my other, propelling my now numb left leg forward. And here come the bees: a huge swarm of invisible stingers shoot electric-shock nerve pain down from my head, through my entire body, which is now jerking like a recently plucked chicken trying to dance.

The dancing is not sexy, which is sad, because my husband and I were both looking very, VERY forward to our designated optimal sexy time, which falls between 9:00 and 11:00 a.m. daily. If sexy time is too early, I faint or throw up on him from low blood pressure; too late in the day and I fall asleep mid boob-fondle. So now, instead of foreplay, we are trying our level best to get to our hotel room without me peeing, fainting, throwing up, or dying in front of Chip and Dale. Husband in tow, I shuffle to our hotel room, where he calls 911 and I get the medical help I need.

Just kidding.

There is pretty much nothing short of a horse tranquilizer that would relieve any of this mess. There is no universal medical protocol in place to aid women suffering from chronic illness who are in the throes of a flare. Why? Because, thanks in large part to the fucking patriarchy, the female-centric diseases that I’ve had my whole life have barely been studied, and are therefore very difficult to diagnose and even harder to treat. So, instead of calling Disney 911 for medical aid, I rely on myself.

My earliest memories are of being sick. I remember my dad’s dry, weathered hands on either side of mine, rubbing back and forth, like he was trying to start a fire. As a kid, my fingers were always cold, numb, and hurting. My joints constantly swelled up with activity. I was dizzy. I was clumsy. I threw up a lot. My first period at ten years of age brought a cornucopia of hellish new symptoms, including debilitating pain two weeks out of the month and migraines. Each doctor’s appointment brought the same diagnosis: physical symptoms caused by stress, anxiety, and depression. Even when a test or scan showed an actual disease, like endometriosis, doctors told my parents that my mental illnesses were exacerbating my symptoms. Yes, I was anxious and depressed, as anyone with constant and debilitating pain would be. But my pain started before my mental health symptoms, not the other way around.

My earliest memories are of being sick. I remember my dad’s dry, weathered hands on either side of mine, rubbing back and forth, like he was trying to start a fire.

As I got older, I got sicker. Fainting, nausea, seizures, vomiting even sips of water, chest pain, numb feet and hands, shooting nerve pain, incontinence, extreme fatigue. The more symptoms I listed for my doctors, the more they believed I had a somatic illness, a mental disorder that creates certain physical symptoms, exactly like the ones I had. I was told I was lying, trying to get attention, that I wasn’t fulfilled as a young mother, that I should just take my meds, shut up, and count my blessings. My story was being written for me, and for so many years I believed it.

After thirty-five years of fighting for myself with medical professionals, I finally got my diagnoses proven by biopsies, blood tests, and scans. Before finally being proven right, that there were actual diseases causing my symptoms, I almost gave up trying. Every negative result caused shame and insecurity, reinforcing the doctors’ belief that I didn’t have a physical illness and was wasting their time. Then, in January of 2018, I was unable to eat or drink, and I could not stand up anymore. Luckily, there was a nice ER doctor who could think creatively, and who didn’t turn me away. After a few days of IVs and meds, I felt better than I had in a long time. While still in the hospital, I began researching possible autoimmune diseases that the doctor suggested could cause my symptoms. After I was discharged, my wonderful neurologist agreed to every test I suggested.

My story was being written for me, and for so many years I believed it.

So far, I have been diagnosed with progressive peripheral neuropathy, autonomic nervous disorder including Postural orthostatic tachycardia syndrome (POTS), gastroparesis, esophageal motility disorder, trigeminal nerve pain, and endometriosis. We are still trying to figure out which autoimmune disease I have, and I’m being evaluated for Ehlers-Danlos Syndrome (EDS).

Now, I am a white woman with health insurance, and I am therefore extremely privileged in our health care system. Studies show that if you are a woman of color, your chances of getting a proper diagnosis and treatment are much lower than a white woman’s. Further studies show that you have a much better chance of receiving proper care if you have money. All of this is horrible. Unacceptable. If I had to work this hard for a proper diagnosis, others who didn’t have my resources or my skin color might never have received one at all.

Freud insisted that a woman’s physical symptoms were the result of childhood sexual trauma, or imagined sexual trauma, and not from anything medically wrong. This theory, maddeningly enough, lives on in many doctors’ minds. Last year, before I was accurately tested and diagnosed, I went to one of the best hospitals in the country. I was told, because I was raped as a teenager, that my symptoms could only be the product of my mind, and that the only treatment I needed was extensive psychiatric care. This “diagnosis” I received is a direct reflection of Freud’s influence in the area of women’s health. Too bad I wasn’t a sick woman in the early twentieth century, where I would at least have gotten a vibrator out of the experience.

What I have is genetic, and I have inherited these diseases from my father, who passed away two years ago. Along with these physical illnesses, I have passed on autistic traits and learning disabilities to my three kids. My older son, age 18, struggles with autoimmune disease, ADHD, Tourette’s Syndrome and inflammatory arthritis. My twenty-year-old daughter has Ehlers-Danlos Syndrome (EDS), ADHD, dyslexia, and POTS. My youngest son, age 16, is autistic, dyslexic, and has psoriatic arthritis. Six years ago, he was kicked out of public school for spending too many days in the hemo-oncology unit when he almost died of autoimmune idiopathic thrombocytopenic purpura (ITP), a disease that wipes all clotting abilities of the blood causing fatal spontaneous internal bleeding out.

In the years parenting three special needs kids while struggling myself, I have been constantly amazed at my children’s resilience and bravery. I will never forget holding my youngest son’s hand, as he tearfully waved goodbye to his classmates and the classroom turtle, which lived in a little glass container by his desk. Later that day, he told me that he didn’t see the point of getting well, if he couldn’t go back to school and have snack time with his friends. We could have fought for his re-admittance. What the school did was discriminatory and illegal, but we didn’t have the strength to take on a large school district while trying to keep ourselves alive.

What the school did was discriminatory and illegal, but we didn’t have the strength to take on a large school district while trying to keep ourselves alive.

My son went into remission from ITP a year later, and was admitted into a private school where he received special training for his dyslexia. He is now a straight-A student at a college prep school, playing sports, and planning on being a pediatric doctor. He proudly calls himself autistic and meets his friends on the weekends for role-playing games. My middle child, who this year became an adult, was at a different school every two years. Between the relentless bullying, not receiving the proper accommodations, and long lasting flares, he struggled through each year. But he kept going, maintaining a high grade point average, playing school sports, and working in journalism. He just finished up high school early at a local community college, and is taking a semester off for a well-earned break, until he starts school again for journalism. My daughter is happily at college, studying psychology and working with kids.

Looking at all their successes now, I can almost forget the years of physical and occupational therapies, tutors, hospital stays, homeschooling, IEPs, constant arguments with schools and doctors, and near constant arguments with the kids. But I won’t forget, and I hope they don’t either.

At Disney, through my hotel room window, I watch my kids swim in the pool. My feet are up, heating pad on, meds in, husband snuggled in bed beside me as we watch TV. Later, we order room service and eat supper as a family. I can’t control when my disease flares, but I do have some control over my response. My kids will keep having flares themselves, and I want them to see that even when sick, they can have a full life.

My illness is progressive, but I am controlling the severity of disability with physical therapy, healthy diet, and western and alternative medicines. My father once told me that two things can be true at once: you can have pain and you can be happy. I’m not happy all the time. I’m pissed off that I was ignored and humiliated by medical professionals for decades. I’m scared that my kids will become as disabled as I am, or worse. But I still love my life, and I fill it up with friends and dogs and cats and music and travel and family, and home and books and writing. I am working on focusing on what I can do, rather than what I can’t anymore. I missed my daughter’s homecoming court coronation. I can’t drive my youngest child to school most days.

But here is the gift that I can give them that I didn’t have growing up. I believe them when they say they are hurting. I have made others believe them — their teachers, their doctors, their coaches — so they can have the childhood and young adulthood that I didn’t. My voice was silenced far too long, so I am showing my children and the world, every day, that we all have the power to take control of the stories of our bodies.

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