The First Time My Illness Brought Me to Tears


I was 21 years old when I started the diagnostic process for Cushing’s disease. I had just come back from a wonderful semester interning in DC, and unfortunately I brought back more than just sharpened professional skills and a catalogue of great memories. I returned to California with a pressure headache like I’d never felt before. My DC roommate and I learned to describe my pain in shorthand. We referred to it as the “man standing on my face.”

Seven doctors laterm I had a name for what was going on in my head: Cushing’s syndrome. I had seen a neurologist, nephrologist and an ENT, among others, and had been put through a battery of tests designed to rule diseases out until something clicked. And once the medical professionals realized that all of the symptoms I had lived with for years pointed to Cushing’s, I began to test some more.

It’s not fun being the one in a houseful of six girls that has to collect all of her urine in a giant jug for 24 hours. Not fun at all.

But I pushed through. I started seeing an endocrinologist who told me we had to figure out if the tumor causing my disease was in my pituitary gland or my adrenals. After the first of what would become many MRIs, it was determined that I undoubtedly had Cushing’s disease and soon after, I was scheduled for neurosurgery to remove the tumor on my pituitary that was wreaking havoc on my body.

So in 2000, during spring break of my senior year at UCSB, I flew home to Northern California to meet with the doctor who would be performing the first surgery I had ever had. And yes, it was brain surgery.

I held it together during the meetings and blood tests that followed. When I was told that I might have to have a spinal tap during the procedure, I almost lost it, but my parents calmed me down.

It was not until I was out of surgery, released from recovery and checked into my room that I began to balk. But soon enough, strong pain medicine won out and I faded in and out throughout the night in a fitful, dreamless sleep.

***

They always say things look different in the morning, and as the sun came up I began to crack. The fissures in my veneer only worsened as I was helped out of bed and looked at myself in the mirror.

I was bruised and swollen and my nose was taped and packed with gauze.

Every moment since “the man” began to force pain and pressure into my head and life, started building in my mind.

The tests, the health problem none of us had ever heard of, and the fact I was in a hospital gown instead of on a beach somewhere continued to stockpile as I held onto the cold ceramic sink in front of me.

I was 22 years old, and all I could think was that the pain I felt in that moment was too much, and I doubted I would ever recover and be well.

And so, I started to cry.

In that moment 16 years ago, I was experiencing a panic attack (which was quickly noticed by my mother and brought to the attention of the nurse). It was my first, but will certainly not be my last. The tears I shed were also not alone. They came and went repeatedly during the long process of healing after my tumor was removed. In the years that followed, gentle tears and ugly weeping inevitably happened as I dealt with my second and third recurrences of the disease. And now, as the third battle with the beast I call Cushing’s continues to rage on, it often morphs into different symptoms and illnesses that continue to push me farther from healthy.

And so, some days I cry.

I’m learning to savor the days when I don’t.

Follow this journey on Tales of a Medical Oddity


Find this story helpful? Share it with someone you care about.


Related to Cushing's Syndrome

woman writing a letter

To Myself on the Day of My Cushing’s Disease Diagnosis

Dear Jen, Oh sweetie. I know you just got some really disturbing news. You just opened up your MyChart account and found a message from Dr. Mulligan telling you that you have Cushing’s disease, and he recommends surgery to remove the pituitary tumor that’s caused it. I know you’re really scared right now. I also [...]
Elvis singing and smiling

Why I Felt Like an ‘Elvis Monster’ at the Height of My Illness

Erin before treatment. Over the span of one spring to the next, I unwittingly transformed from a fit, young(ish) mother, committed to healthy eating and exercise, into what, in retrospect, I describe as “Elvis Presley circa 1977.” This is the year The King died an overweight icon with blood pressure higher than Priscilla Presley’s 60’s [...]
An image from the "Too Much Information" virtual-reality video.

The Virtual Reality Video That Helped Me Understand My Children's Sensory Overload

Have you ever seen something that truly changes the way you treat others? This week I watched a video that has changed everything about how I treat and support my two children on the autism spectrum. For a few minutes I had the privilege of seeing the world as they see it. I can never forget [...]
brothers kissing

10 Things I Want My Healthy Child to Know I Understand About Life With His Sick Brother

1. There will be pain. Medical advancements may dictate that one day your dad and I will leave this world and you will be thrust into the caretaker role. At worst, you will bury your brother, and it will leave a hole in your heart so painful you may resent us. On a daily basis, I wonder which one leaves us in [...]