The First Rebellion

Last time, I shared how I was a loyal patient. Well, that lasted two years. Then I rebelled. It started with a move, which being a New Yorker was a rebellion in itself. Some born and bred New Yorkers are really obnoxious about their loyalty to the city as if it should have it’s own flag. Like my boss at the time, who was an entertainment agent. He was a really good guy with a big heart. I was an intern, and he had dreams of me becoming one of the literary agents at his firm when I graduated. He once paid for one month’s rent when I was overrun by medical bills. When I worried how and when I would paid him back, he insisted it was no big deal and that I forget about it. That’s what I mean, he had a big heart. But he had that stereotypical New York City attitude. When I told him I was moving to the West Coast he said, “Well, you know what they say. If you can’t make it here…” I think that was his awkward New York way of saying he’d miss me.

I knew stress wasn’t good for my health, so I decided moving out of the city would help my situation. The rents were high, the streets were incessantly chaotic and the lifestyle was gyrating. I was tired of working multiple jobs and still being broke. I was denied Medicaid working minimum wage jobs, told my income was too high, and $30,000 of hospital debt tanked my credit score. The little time I had between college classes, my internship, babysitting and my job at a bookstore, I called pharmaceutical companies asking for ways I could afford the expensive medication my doctor said I would “die” if I stopped taking. My best friend moved to Seattle at the height of it’s coolness in the nineties, when bands like Pearl Jam and the Foo Fighters were dominating airways, and the movie Singles portrayed an approachable, down-to-earth, albeit quirky dating scene. My friend said Seattle was way more affordable than New York, and more of a laid back lifestyle. What stressed out twenty-something wouldn’t be intrigued by all that?

I moved to Capitol Hill in 1997, rented a charming little studio apartment with hardwood floors, a vintage eat-in kitchen and a big walk-in closet with a window where I set up a desk and took an online short story writing class. I attempted to expand an edgy, urban magazine called Proof: Downtown I had self-published and sold on consignment all over New York, with the help of unpaid writers and interns. (My Proof feature, “How Redefining Our Perception of Beauty Can Change American Culture as We Know It” is noted in the sociology book In The Flesh: The Cultural Politics of Body Modification by Victoria L. Pitts). The Seattle crowd I met on Capitol Hill at that grunge-y time didn’t have the ambitious drive of twenty-somethings in Manhattan, and my cross-country publishing venture fell apart.

Dusting myself off from that fail, I hired a temp agency to find me anything. Finding a job, for the first time in my life, wasn’t easy. The local papers and news channel weren’t hiring, I was shocked by the scarce media opportunities. I soon afforded my ridiculously low rent working part-time as a secretary at a real estate company. It was the most boring, lifeless job I ever had. But it paid the bills, so I stayed for a while, continuing to look for publishing jobs which were non-existent. Up until then, I thought every city was a media hubbub like Manhattan. I was wrong. I ended up settling for a lower paying job working at a specialty bookstore where I mended ephemera. It wasn’t my highest potential, but I was happier there than stapling one hundred photocopies of real estate listings in towns I never heard of.

Health care was more accessible in Seattle than New York. I didn’t need to apply for Medicaid there. There was a clinic near my apartment that offered sliding scale fees for doctor’s visits. The doctor at the small country-style clinic recommended an acupressure point for pain, something I hadn’t heard of before. Harborview, the city hospital, said my income qualified me to receive free medication. I left their pharmacy with a year’s worth of low dose birth control pills, a prescription given to me for horrendous periods.

I started to gain weight, something new for me. I took it as a sign the less stressful lifestyle was helping as I felt it would. Feeling validated, I decided to trust my gut feeling about being misdiagnosed. I stopped taking all of my immunosuppressant drugs. For a few weeks, I felt relieved. I was free from those toxic pills. Maybe I was cured!

What I didn’t know was the immunosuppressant medication was controlling a dangerous amount of inflammation. I didn’t know that while I was right I had been misdiagnosed with Crohn’s disease, I did have another serious medical condition that remained undetected.

And this is what led to the next hot mess. I almost died.

Medical Intuition Tip: Don’t make a hasty decision without having all the information yet.

Medical Intuition 101: It Nags

I was in my late twenties and I didn’t take my intuition seriously. One of my friends, who was pursuing a Master’s in social work, said I was such a good reader of people I should become a psychologist. I entertained the idea, spent one year working toward a PsyD degree. I quickly realized my ability to read people wasn’t enhanced by studying clinical psychology. The courses, though interesting and useful for personal development, were analytical, and thinking of people this way, trying to fit them into boxes based on their behavior, shifted me into ego. When analyzing people through ego, I found my ability to organically read and understand people wasn’t as easy. In fact, it felt very complicated. I asked myself, “Why do I need to go through all of this complex theory when I can tune into people and get right to it?” Then came Statistics. And I said, I’m out. I happily returned to my first career, newspaper reporting, where I could use my intuition freely while interviewing people and still feel I was making a difference.

I was used to naturally using intuition to help confused friends and family seeking clarity, but I didn’t realize that I also had the ability to read myself. I had always been a spiritual person, believed in angels, and prayed to saints, Jesus and Mother Mary. But I didn’t think I was anyone special, that my guardian angel would go out of his way to help me out. I didn’t think God installed a GPS in my soul, one that would automatically guide me, whether I listened or not.

This time, in my late twenties, I chose to listen. This health crisis was too loud to ignore, and I had a nagging assurance that I had the Epstein Barr Virus and it was making me very sick. I refused to continue suffering without receiving validation. So I asked my primary care doctor in Long Beach, New York, to test me for it. He reluctantly did.

My heart was racing as I sat in his examining room. This was the moment when my gut feeling would be validated – or not. Maybe it was just psychosomatic. Maybe I didn’t have the virus and this was all in my head. No, a stubborn voice told me. This is not in your head. You are not making this up. You have the virus!

The tall, skinny doctor walked in wearing an outdated maroon and beige striped shirt, nerdy wire-rimmed glasses, his thick, wavy black hair looking very Kramer-ish. He slid the lab results out of a folder.

“Well?” I asked, sitting on the edge of the cold, steel examining table.

“Yes,” he confirmed.

“I do have an active Epstein Barr infection?”

He hesitated. Sighed. Rolled his eyes toward the ceiling. “It doesn’t mean anything,” he said with irritation. “Everyone has this virus. Listen, I think you’re having a hard time dealing with the fact that you have Crohn’s disease. I’m going to give you a referral to a psychiatrist, it can help.”

I felt my face get hot, my muscles tighten and a great inspiration to shout what a condescending dickhead he was. I knew my symptoms weren’t depression. I knew my symptoms weren’t Crohn’s disease. In fact, I didn’t believe I had Crohn’s disease. My intuition negated that diagnosis the minute it was made. In a few more years, I’d receiveΒ  validation that I was right about that one, too.

That inner nagging, the kind that isn’t just a hunch, it actually makes you feel anxious, uneasy, panicky – that is your intuition screaming to get through to you. Your guardian angel may send you signs, but you miss them. Your heavenly guides may try other ways to get through to you, but you’re still not getting it. Then the Divine awakens your inner GPS and when the doctors are telling you turn left, all you hear is turn right and if you don’t turn right you just know you’re going to get lost. So you start to feel anxious. And if you’re unsure of what direction to take next, you’re stuck in a conundrum. You know this doesn’t feel right, but you’re not sure what your other options are. That’s when doubt and fear take hold and say, “Look, you have no proof. Just trust what they say. You need some kind of treatment, and maybe they’re right.”

If your story is anything like mine, the proof will eventually come that the condescending dickheads weren’t right, and you were all along.

Doctor’s oath: First, do no harm. Patients oath: First, trust your intuition.


The Yuppie Flu

My first exposure to Epstein Barr was when my friend’s older sister became very sick. It took a while to find someone who could help her. This was the first time I heard of an integrative doctor. It was 1987, and so many people were ill with this virus, especially professional women with demanding jobs, it was dubbed “the yuppie flu.” It made a brief flash in the news, and then scientists dismissed it as probably psychosomatic and it wasn’t heard of again.

The public may have seen it brushed off, but that didn’t make it go away. I watched my friend’s sister whittle down to emaciation, too tired to leave her bed. A stunning girl who had been life of the party was now in a perpetual bad mood, easily angered. I remember sitting in the back of her BMW, she grumpily driving us license-less kids someplace. She pulled out of the garage, her bony hands turning the wheel. She sighed, her words thick with frustration as she said she felt like “a dirty dish rag.” I was around twelve at the time, imagining what that must feel like. I had experienced fatigue and brain fog since childhood, and mornings were most difficult. But it wasn’t debilitating. Not at that time.

I asked my friend what was her sister doing to get better? Taking Centrum vitamins, she said. And she was on a special diet and medications treating a Candida infection, too. She received intravenous vitamin treatments. I don’t remember what else. What I do remember is that she got better. She was cured. She went on to marry her college sweetheart, birth three sons, and had enough energy to be a very involved, hands-on, fun, stay-at-home mother. The kind who volunteers to dress up in silly rental costumes for special events at her kid’s school. Her angry self had disappeared with the virus. She was now all smiles, a vibrant, sunny wife and mother who clearly enjoyed life.

Fifteen years later, I was a young professional with a demanding work schedule, and the annoying fatigue that plagued me throughout college was no longer alleviated with caffeine. I suspected I had the Epstein Barr Virus and it was responsible for the exhausting chronic flu that was wiping me out. My career was slowly slipping through my fingers as I was increasingly finding it difficult to get to work, and do my job. When I asked my primary care doctor to test me for the virus, he shrugged as if it was inconsequential, but agreed so I’d stop pestering him. His reaction shocked me more than the results.

Where Does The Time Go?

This is the one million dollar question for Mr. Epstein Barr Virus. It would take me a while to explain the physiological reasons this nasty virus is zapping away my time by using up my energy. Here’s the every day answer:

  1. Trying to sleep.
  2. Sleeping.
  3. Staring off into “zombie zone” while your brain’s computer program is frozen.
  4. Thinking about everything you want, and need to do.
  5. Thinking how frustrated you feel about everything you’re not getting done.
  6. Effort made getting up. Effort made sitting down. Effort made breathing.
  7. On a good day, dishes get done. This task takes much longer than usual because your body feels heavy, as if matted with thick, dried mud. Your reflexes are off, so you’re more prone to dropping something. And in Zombie Zone, you forget where things go.
  8. Cleaning up messes and nursing cuts and bruises from dropping things, tripping, stumbling, doing anything other than sitting or lying down.
  9. Watching TV. Either escaping into a happily ever after, or feeling reassured that you’re not the only one dealing with enormous amounts of stress.
  10. Thinking about taking a shower. Visualizing it. Telling yourself you can do it. But the amount of energy it takes to undress, deal with the whole process of bathing, is too exhausting. So you remain in your pajamas, again.
  11. Asking yourself, am I depressed? I don’t feel depressed. I want to live! I want to get up and dance, drive, see my friends and family, work, CREATE! No, I am not a depressed person. I am depressed about my body not working for me. That it won’t listen to me, won’t obey my commands to MOVE! But I don’t let that stop me from doing whatever I can each day to appreciate this life I’m given and the opportunities to heal.
  12. Remembering all the things you used to do, how capable and physically strong you were. Reinforcing those memories so you don’t forget who you really are and what’s possible again. This illness is not my true self, it is a health hijacker.
  13. Crying, secretively, on those days when you feel so fed up in the cage that is your body, you want to scream. But you don’t have the energy. So you weep, quietly if someone is home, loudly if you’re alone. And you get that shit out so you can wipe your nose and move on with this healing business because it is hard work. And you can’t spend your days crying about it or you’ll defeat yourself. So let it out, cry your freaking eyes out, and then bravely face this day.
  14. Talking to loved ones on the phone, reassuring them you’re getting answers and doing everything you can to get better. Being extra mindful not to complain too much about your lot, not to feel sorry for yourself. You want them to know your spirit’s got this. No matter how much your mind checks out on you, your spirit will continue to fight the battle.
  15. Fantasizing about all of the things you will accomplish when you feel better. Working out again and feeling strong and free in your body! Being able to tolerate more foods (God willing!). Travel, oh all the place you’ll go! Expanding your work hours and feeling part of the community again! Engaging in your favorite hobbies; that half finished creative project finally gets done! Waking up feeling refreshed and being in awe how liberating having a running motor is again – you can drive anywhere you want, get the house sparkly clean, go for a super long nature walk! YOU ARE FREE.

So that’s where the time goes. Getting through the night, fighting to rise in the morning, donating hours of time to planning, visualizing, hoping, praying because doing, for now, is limited. Emphasis on for now. The best thing about having a crappy present moment is all present moments are temporary.