The LOVEolution » Lesson #2 : Never Give Up

Seven Lessons I Learned from Disease

how an illness taught me how to live

Lesson #2 : Never Give Up

August 28th, 2010

A new chapter of pharmaceuticals had begun. But this time it was different. This time I was told if I didn’t take the fifteen pills a day for the rest of my life I would die. There were side effects. Fifteen pills soon turned into forty. A day. I moved to Seattle, where I felt less stress, gained weight and physically felt better. My apparent improved state of health really supported my denial. I decided to ditch the pills and go about life as if I had never been diagnosed with Crohn’s. Within months, I was 100 pounds and shipped back to New York in a wheelchair. I was given my own aisle on the plane. People asked me if I had AIDS. I had quarter-sized, bulbous red blisters all over my legs. My legs were sticks of bone, but my right ankle was grossly engorged, which made me look even more freakish. I was a skeleton, my skin stretched tightly on my bone, and my appearance scared people. No one would come near me. I was stared at. I was dying and everyone who looked at me knew it.

My doctor, a big wig with the Crohn’s and Colitis foundation, looked me straight in the eyes and told me if I didn’t admit myself to the hospital that moment, he didn’t think I would survive the week. He also added that there was no guarantee that it was not too late to save me, even if I was hospitalized. I took a moment to consider my options. My mother looked at me, aghast, as if I had only one option. My many hospitalizations at this point had left me traumatized and I thought for a moment that I would rather die than lie in another hospital bed. Before I reluctantly agreed to be admitted, the doctor asked permission to take pictures of my blistered legs for his next book about Crohn’s.

After years of suffering, I felt ready to die. My organs were failing, my body was so starved it was eating it’s own muscle.There was a point in the hospital when the excruciating pain ceased and a beautiful tranquility came over me. A priest gave me the communion. I smiled. I was on my way out. I was on my way back home.

But it wasn’t my time. I hadn’t even started my mission on earth. So all the love in Heaven made sure my spirit stayed put.

The doctors took heroic measures to bring me back. One of the top Crohn’s doctors in New York was brought in to check out my case. He brought with him a small crew of medical students who studied me like a specimen. Miracles did happen. Everyone acknowledged them. Like the morning I was due for a blood transfusion, suddenly my tests came back saying it wasn’t needed. The doctors couldn’t explain the overnight change in my chemistry. It was just another mystery. I can still remember the sweat on the doctor’s brow, the look of relief on his face when I showed signs of coming back to life.

It was a long road back to my previous condition. I had sunk to ridiculously poor health. I couldn’t walk up a flight of stairs. I looked like a puffer fish and was balding from steroids. One day at a time, I worked my way back up from disabled to chronically ill.

Somehow, through sheer determination, I managed to achieve my childhood goal of becoming a writer. I was a reporter for a local paper, and got a side gig writing for an entertainment magazine. I eventually became an assistant editor.

I was also diagnosed with Chronic Fatigue Syndrome/The Epstein Barr Virus and Fibromyalgia and was given more pills. One Crohn’s specialist believed I had IBS, Crohn’s and Colitis! For years, hospitals were an integral part of my life. I received weekly IV’s for dehydration. I vomited daily, including at work. No one knew. I’d get right back to my desk and start typing away. I had headaches, felt heavily exhausted, irritable, sometimes fuming mad. I was in intense pain every minute of the day. Every time I moved, I felt a fiery sensation rip through my muscles. Behind closed doors, I cried a lot.

I never shared with a single soul what I really experienced in my daily hell with disease. My condition made others feel uncomfortable, and it was uncomfortable for me to talk about it. There was so much fear around disease. It felt like no one wanted to know or talk about it because it was scary, like a curse that could be caught. My friends didn’t understand why I never wanted to hang out. I couldn’t leave the house. I was a prisoner in my body. All my effort went into getting to work, which was a huge feat in itself. I had nothing left to give to anyone, including myself.

I remained in this pattern until another major crisis – my third – presented itself to me. Another opportunity for change! Just three years after my last near fatal bout with the disease, my condition was still so progressively deteriorating that my G.I. doctor told me chemotherapy was my last resort. When I hesitated on his advice, he assured me to get a second opinion. He was confident, remarking that any other doctor I went to would agree with his prescription.

What he assumed is that the next doctor I spoke to would think like him.