Surviving Boot Camp

The first time I shared this story was nearly twenty years after it happened. It was so painful, and shameful, I kept the dark memories inside all that time. I was in survival mode, and when you’re in that mode there’s not much time to reflect or process. You live through some major shit, including a near death experience, and you keep trucking on. There’s not time to process the myriad of emotions because you have to figure out how to fix the the next problem – where to live after you’re released from the hospital, how you’ll pay your  bills, and afford your medication. There’s no time to ask yourself, “how do you feel since you almost died?” The most obvious feeling is consistent anxiety. I was anxious before nearly dying. And I was anxious after surviving, wondering how to create peace, success and stability in my life with a chronic, life-threatening illness.

I was sitting in a therapist’s office when I finally broke down in tears, years of repression gushing out like rapid rivers. I explained why I had “medical trauma,” PTSD, that manifested in panic attacks when in hospitals, heart racing and sick to my stomach when I smelled anything that reminded me of that God-awful stay – the smell of certain lotions, soaps, cleaners, antiseptics and microwaved foods. I once had a massage therapist knead me with medical gloves because he had a cut on his hand, and I had a panic attack on the massage table, bursting into tears, telling him to stop touching me immediately. I left the spa shaking, working hard to remember where I was, and halt the flood of frightening memories. I have such a fear of medical tests, that I cowered away from getting an MRI for back pain, even though my doctor prescribed me an anti-anxiety medication to deal with it. The pills are still sitting at the bottom of the bottle right now, and I still haven’t gotten the MRI. The last time I tried without the pills, I had a panic attack and had to stop the test. I felt like the machine was engulfing me, and I was suffocating. I was trembling as I left the room, knowing I wouldn’t be back. I couldn’t. I’d rather live with the pain than go through that again.

1997.

The memories come to me in flashes. I was sitting in my doctor’s office. He told me if I wasn’t admitted that moment to the hospital a few blocks from his office, he predicted I would die within the week. Grim-faced, he said he couldn’t guarantee he could save my life, but if I didn’t go inpatient that moment, I would surely meet my  maker.

I didn’t want to go. I was traumatized from the last hospitalization, a few years earlier. I considered death would be a kinder fate. But something in me said, give it a shot. Don’t live with regrets. That’s so my spirit talking, no regrets, no what ifs.

The next thing I remember is my mother dropping me off at Lenox Hill hospital in New York City. I don’t remember checking in. I do remember my belongings being stripped, as if I were entering jail, and placed in a locker somewhere out of reach. I was given a flimsy gown. The hospital room was always freezing cold, and that paper-thin “gown”, more like a glorified light blue rag tied at the back, useless aside from barely concealing private parts.

I remember repeatedly asking when I could shower, and being told I couldn’t because of the I.V. in my arm. I remember being told I would be given a “wet bath”, a sponge and soapy water to bathe in bed with, assisted by a nurse. That never happened. For ten days, I stank like bile, feces and rot.

A few friends came to visit, three to be exact. They were old work buddies. One brought me mashed potatoes, one of my favorite foods. The nurse snatched the thoughtful homemade mash, stored it away, and never gave it back to me. When I later asked for it, she said she “forgot” about it. That comforting homemade gesture from a friend, at the time could have been a young girl’s last wish, and the nurse forgot about it; a simple, meaningless thing to her, everything to me. I never got to taste it. When the nurse came during visiting hours and said I needed more tests done, I snapped at her to leave me alone with my friends. I was dying, and only three people had shown up for me, for a few hours. That time, that support, was precious, and way more important than any test. I needed that morale to keep my strength up. I never knew loneliness like those horrible days and nights spent alone and helpless in that hospital bed.

When I had called my “best friend” from the hospital phone and asked her to visit, she said she couldn’t, she was too scared to take the train from Long Island to New York City. It was a simple hour train ride, and a taxi would have taken her straight from Penn Station to the Upper East Side hospital. But she couldn’t get over her fear to be there for me, or maybe she couldn’t handle it. Yet, I was there, at the hospital, to support her when her mother had a kidney removed (she wasn’t dying, and had a team of worried family members there for support, but still I showed up, silently dealing with hospital-related PTSD that no one noticed or cared to hear about). The final blow to that friendship was when she unleashed her resentment on me for not flying cross country to be her bridesmaid. I never asked her to be my bridesmaid. I never imposed on her, or made demands. She didn’t make the effort to be there at the scariest time of my life, she was never a real friend.

Illness weeds out the friends who aren’t real. That’s one of it’s blessings.

When I asked my mother why she never visited me, she said I looked so awful, and she thought I was going to die, and she didn’t want to remember me that way. Basically, like my supposed best friend, she couldn’t handle it. I don’t know why my father wasn’t there for me. I have one memory of him and his girlfriend showing up when I had a CAT scan done. They sat in the waiting area, glued to their laptop screens, working, uninterested in the details of my situation. Young, and frightened, I asked my father if he’d stay next to me when I had the CAT scan done and he said, no way, he didn’t want to get cancer from the radiation. I was never hugged. I was never told everything would be okay. My father never sat next to me when I was in the hospital bed, never comforted me when I was in pain, never prayed with me. I felt like a burden to him, and like my life wasn’t as important as his work.

None of my other family members showed up – my godparents, my aunt and uncles, my cousins. It was devastatingly painful and frightening to be facing death alone in a hospital room, feeling as if my life didn’t matter. It was a deeply painful idea to believe my suffering was inconsequential to those I loved. Maybe my mother hadn’t told a soul what was really going on, she is one to spare others discomfort and what she deems negative attention, choosing instead to suffer alone. I could see her transferring that onto me without my choice. Maybe no one knew. I hope that was the case, because the alternative is too painful to believe, that like my “best friend”, my family didn’t care enough to make the effort to be there for me when I was so close to death.

My stay at the hospital was gruesome. The nurses were mean, and never offered a kind or comforting word. I felt like just another body in a bed, another machine to check, tracking my vitals as if I were an object, not a human being. I was twenty-three years old, wasting away, looking like a Holocaust prisoner, older than my years, gripped in extraordinary pain that dissociated me, thinned hair, sunken eyes, dried lips, a rigid, cold, skeleton replaced the vibrant, youthful girl I had once been. I spent days and nights next to a silent phone mocking me, reminding me how unmissed I would be, in a quiet room unless the emergency case next to me was also writhing and crying out in pain. The only source of entertainment I had was a book my friend had brought me, Bridget Jones Diary. I was too tired and overwhelmed to read. I tried, re-reading each line, frustrated with my cognitive impairment. There was no television. To this day, I prefer not to sit in total and complete silence for too long. It triggers anxiety. I prefer guided meditations, music, chanting – anything but long silences.

I was routinely hauled out of bed, early in the morning, 6 a.m., into a wheelchair, rolled to the next test. There were so many invasive tests, poked and prodded again and again, like years earlier, but this time it was worse. More invasive, more painful, even less compassionate.

One day, one of the steely, frowning, over-burdened nurses hastily grabbed me out of the uncomfortable hospital bed and plopped my bony body into a wheelchair. She wheeled me down the hallway, into an elevator, and down to a basement floor, silent the entire time.

She wheeled me into what looked like a room for experiments – it was large, with a stainless steel table in the middle and a large focused light overhead and what looked like some sort of camera or X-ray machine.  It was like something out of a horror movie. Just me, bound to a wheelchair, in this creepy room, with this bitter nurse, no one else around. No sounds of people talking or walking by. Complete silence aside from a white noise, like a fan or air conditioning humming.

The nurse forcefully grabbed me from the wheelchair and clumsily hauled me onto the steel table with the big, bright light overhead. Before she had wheeled me down to this room, I had been given a laxative drink and no food. I was hungry, emaciated, cold, weak and scared. And I had excruciating cramps, and the urge to poo.

The nurse then showed me what looked like a plastic razor blade – a flat, rectangular-shaped object that she said she was going to insert into my rectum. I immediately broke into a cold sweat, my heart pounding, my body tensing, struggling to breathe. My history of sexual assault was triggered, I felt unsafe and violated. She never asked how I felt, or asked for my permission. She was going to do whatever the doctor ordered her to do, regardless of how I felt about it.

She shoved the piece of plastic into my rectum and it hurt like hell. Tears silently rolled down my cheeks as she demanded I hold the object inside of me as long as I could. I tried, but I had no muscle strength. I had no muscles left, they had been eaten away from malnutrition. I was bone, tears and anxiety tied up in a flimsy hospital gown. I didn’t even realize I had lost control of my bowels. I mean, that’s part of why I had been hospitalized. I had inflammatory bowel disease, a high fever and life-threatening anemia. I was too weak to hold some foreign object in my rectum, and psychologically, it scarred me in a way that insensitive nurse would never understand.

“I told you to hold it!” She shouted, stalking over to me, eyeing the mess I had made. “The test can’t be done unless you hold it for longer!”

“I’m sorry, I can’t!” I cried, my heart pounding, my stomach flipping, my bum sore and throbbing, stinky brown and white fluid spilled down my legs, all over my flimsy gown.

I felt ashamed, misunderstood, unseen, unheard, like a piece of sick meat. I didn’t even think to be angry, that rage festered deep within, like those little flames left in a fire pit that have the potential to explode. My initial reaction was shame, and embarrassment.

The nurse angrily and impatiently moved my weak and soiled body back into the wheelchair. She wheeled me to the corner of the room, and placed the chair against a wall. She muttered she’d be back and briskly walked out of the room, leaving me alone. Alone, unable to walk out of the wheelchair. Alone, sitting in my cold, wet, watery feces. Alone, in the cold, sterile, creepy room without a human being in sight. I watched the clock on the wall. Each minute felt like an eternity. I was drenched in humiliation, I was completely powerless to get up and move, I was too weak to walk, and my right leg was limp with arthritis and boils. I fixated on the clock, watching minutes, then hours go by. Finally, the nurse returned, looking frantic and somewhat embarrassed herself. She had forgotten about me in the hospital basement, left sitting in my own shit. She never apologized. She never admitted she fucked up. She simply grabbed the handles of my wheelchair and wheeled me toward the elevator, up a few floors, and back to my room. Again, I felt like a burden. My life, unimportant, a nuisance, a chore to be done with as soon as possible.

I was adamant about getting a sponge bath after that. The nurses responded to me as if I were an entitled brat asking for a shower of diamonds, as if they had better things to do. It was easy for them to treat me as a low priority because I didn’t have an advocate holding vigil by my bedside. There wasn’t a loved one fighting for my right to feel clean, to have my dignity as I was dying. There wasn’t a loved one questioning whether these painful, invasive tests were necessary, talking to the doctor, asking how I felt, what I thought, what I needed. I felt like a guinea pig, left alone to be experimented on before I died. Rounds of interns visited me, eyeing me and taking notes, using me as a case study for their medical training. The only peace I felt was when a priest came to read my last rites and give me a Eucharist. I sensed he was overwhelmed by his job, facing death in such an intimate manner, but he was a compassionate old man, and I believed he believed in the prayers he said for my soul, and that was comforting.

It was then that I felt the presence of Jesus over my right shoulder, and all pain cease. I felt a warmth and peace come over me, and I saw a vivid, fluffy white light all around me. I felt myself float above my body. I thought, this is it. I’m going home, this is what dying feels like. It’s peaceful. It’s merciful. I hadn’t had a particularly close relationship to Jesus before this, programmed with Catholic guilt, taught he died for my sins, translating that I was responsible for his death. But when he appeared that day, none of that was real. There was no guilt, no sin. His energy was pure, unconditional love and comfort, like an old best friend I hadn’t spoken to in a while but once we re-connected it was BFF again.  I told Jesus I was ready to go home, I had enough of the suffering. His energy was warm, loving and kind but he didn’t come so close as to take me home. He came close enough to tell me that I wasn’t alone, and that this experience had purpose.

I had been scheduled for a blood transfusion the following day. The doctor believed this was the last resort to save me since I was so weak, and my organs were failing, or in his words “shutting down.” The next morning, he walked into my room looking odd, antsy. I expected him to let me know what to expect (if I was lucky, usually I was just thrust into tests without much explanation). I expected to be wheeled into whatever room the transfusion would take place, and I prepared myself for more pain.

The doctor’s brow was sweaty and he kept looking at my chart, flipping papers back and forth. His eyes widened with confusion, he seemed to be convincing himself of something before he spoke to me. Finally, he said, “You won’t be getting a transfusion today.”

I can’t even tell you the relief that poured over my entire body.

“I don’t know why,” he went on. “I can’t explain it, but your blood chemistries changed overnight. Your numbers right now don’t require a transfusion.”

It was a medical mystery. It was my miracle. My numbers had dramatically changed overnight without any rational, scientific explanation. That meant no more invasive procedures! Within days, I would be given multiple prescriptions, the shirt and leggings I had walked in with, and hobble out of that hospital, never going back. I never would get that Tupperware with homemade mashed potatoes.

When I left, I was still shaky, it had been nearly two weeks since I walked on my own two feet. I noticed my black leggings felt tight. When I was admitted they had been loose, sagging around my frail, bird-like legs. I looked in the bathroom mirror, and my body was completely distorted. Fluid retention had pooled into pockets of my body being bedridden so long, and the anti-inflammatory steroid, Prednisone, had given me the infamous “moon face.” My calves were super skinny, and my ass was gigantic, which by today’s Kardashian standards is hot. But in the ’90’s, it was grotesque. My body was a lumpy, uneven, sack of bloat and bones, parts of my body were heavily bloated with weight, and parts of it were still emaciated. It was the first time I noticed stretch marks on my thighs.

My father picked me up from the hospital. He tried to cheer me up, asked me where I wanted to eat, he’d take me anywhere I wanted. I said I wanted lobster. He took me to a restaurant and bought me a lobster dinner. He didn’t ask me anything about the hospital stay, the prognosis or medications prescribed. I was uninsured, and he didn’t ask me anything about the bill or how I’d pay for it. I felt as if I had survived boot camp, and he was celebrating with a feast, a job well done, and that was the end of it.

Side note, the business of illness: I left the hospital with a $50,000 medical debt that ruined my innocent credit score for many years to come, which made it impossible to rent my own place without a co-signer, lease a car, get approved for a credit card or have a cell phone or utility account for gas and electricity without having to pay a large deposit first. I was also harassed for years by ruthless debt collectors who at that time were allowed to threaten and degrade, furthering triggering the massive stress and PTSD living with chronic illness. This is stuff you rarely hear about, but it’s a financial reality for many sick people in America. When I was in hospital, no one ever spoke to me from the billing department. No one discussed my payment options, and that I was eligible for government assistance. I checked in, and checked out, and weeks later got a bill in the mail.

The struggle for wellness continued for nearly a decade, as I took 40 pills a day, my health progressively declined. Shortly after the tragic, heartbreaking events of 9/11, as I lay in bed on disability, I’d be faced to make a decision that would change my life forever.

Medical Intuition Tip: Always ask for an advocate for your medical care and treatment. If you can’t find one, be one for yourself. You deserve it, your life is worth it, and it’s your right as a patient.

*My first two hospitalizations were traumatic, no doubt. When I was older and able to advocate for myself, I had more positive experiences when inpatient care was needed.

30 DAYS

30 days. That’s usually the stint in rehab, right? I shouldn’t know. My problem isn’t addiction, it’s this freaking chronic illness that sneakily steals a whole month away from me in the blink of an eye. Maybe addicts can relate. Bacterial and viral infections have their “binges” that take over the body and you just have to wait it out until you feel anywhere near “normal” again, which for CFS is exhausted without feeling like you’re on your flu deathbed.

The hardest part about being a Type A person dealing with imbalances is that your body routinely sabotages any hope of structure so that you’re anxious just thinking about all the self-imposed deadlines you’ve set. Moving forward, that’s the biggest challenge having an illness that’s hellbent on holding you back.

There’s so much to share with you, it’s ridiculous. Suffice it to say, I apologize I haven’t written in a while. It’s not like me. It’s very much like these illnesses. At least the initial setback involved something meaningful. It was Nick Kroll, the comedian. And John Mulaney, his sidekick. I took an hour train ride into the city to see their Broadway show. It was hilarious. We were hungry after, and though it was late, we decided to go to a gluten-free restaurant in the theater district that makes the most amazing gluten and yeast-free pizza. I indulged. What a treat. We took a late train home. It was too late. The energy expended was too much. I got to thank Nick Kroll for being comedic therapy these last few years I’ve been sick. He said, “oh, that’s nice of you to say that.” He said that same thing to his next fan. I got home about 3 a.m., beyond exhausted. The exhaustion lingered because with chronic fatigue, you don’t just “bounce back.” One night of walking too many city blocks, staying out too late, using up too much energy, and your body zeroes out it’s energy account so you’re left bankrupt for days, or in my current case, weeks. It’s called post-exertional malaise.

Two weeks later, unexpected bills ate into our checking account. There wasn’t enough left for rent. And that’s when adrenal deficiency hits hardest, when you drop into fight or flight mode. When you feel held back from living your full potential, too exhausted to pursue your dream, too drained to fix the financial problems. Couple that stress with the lingering effects of a late night in the city and….

that’s why I haven’t written in 30 days. I’ve been climbing my way out of a dazed, zombie-like exhaustion that sucks all creative energy away and sets you like a jello mold into a state of suspension where days bleed into each other, and the only thing that changes is what time the sun is up.

I’m back now, with no grand plans to ef up my energy expenditure again. Of course, life can throw a big, fat monkey wrench into this well-meaning fluid true storytelling. My life has been a series of a great big hook taking me off stage just when things are getting good. But for now, we’ll affirm this won’t happen and I will continue with the next chapter in my story: How I survived a one-week-to-live diagnosis.

Medical Intuition Tip: No matter how much you want your body to adapt to your desires, sometimes it’s easier to accept it’s limitations.

 

Life, Death and L.A.

In the last post, I was in a state of rebellion. I was living in Seattle, and feeling physically better. Convinced I was misdiagnosed with Crohn’s disease,  I stopped taking immunosuppresant drugs. It’s true I had been misdiagnosed, but I didn’t know this for sure yet. I also didn’t know that I had another potentially life-threatening autoimmune issue, and I knew nothing about how food allergies and intolerances could create massive inflammation. I didn’t even know I had food sensitivities, and that the medication I was taking was preventing me from a serious health crisis at that time.

I remember how liberating it felt to leave the big orange bottle stuffed with large capsules untouched. It was an appreciated break from having big pills get stuck in my throat on the way down, and from the side effects, ironically, that mimicked the very disease I was diagnosed with: nausea, vomiting, diarrhea, dizziness and fatigue.

It didn’t take long for the inflammation to unleash with angry force. I didn’t know that every day I was eating copious amounts of foods that I was severely allergic to. But my body knew, and there was no way to ignore it. The extra weight I put on quickly flew off. The severe food poisoning symptoms – vomiting, excruciating pain and diarrhea – made it difficult for me to work. Within a few weeks off medication, I had dropped down to 80 pounds and weak and emaciated, had to quit my job doing ephemera repair at the bookstore downtown.

No, worries! My optimistic spirit said. I was dating my co-worker and he was transferred to manage the bookstore in West Hollywood. Maybe all I needed was sunshine and happier dispositions. While I enjoyed the lower cost of living in Seattle and the short walk to admire the beautiful view of Puget Sound from Pike Place Market, the grey skies, chilly weather, aloof culture and lack of diverse, vibrant energy in the city left me pining for someplace that felt more like home. There must be a reason so many New Yorkers migrate to L.A., right?

We packed up a U-Haul and drove to California. My boyfriend went to work at the bookstore in West Hollywood, and I fought hard to maintain denial of my full-blown health crisis because that sparkling sunshine made my spirit feel so good! The warm weather alleviated intense aches and pains, and the neighbors were so friendly. Beautiful women smiled sweetly at me as I walked down the street. L.A. had more going on than Seattle, so it felt more like home, but without the bitchy attitude of New York, and without the crappy weather of both those cities. I found my utopia, and I didn’t want to leave. My intuition said, this is where you belong. Something wonderful will happen here.

But timing wasn’t right, and hopeless events aligned, forcing me to leave. First, my boyfriend was gay. How did I know? I came home one day to find him and a very feminine man friend watching my Breakfast At Tiffany’s DVD. Then, while unpacking, I came across a bundle of notebook papers that turned out to be a diary entry. In it, he rambled on about his feelings for a boy on the bus and how much he desired him and what did this mean. He may have still been trying to figure it out, but to me it was very obvious. He was gay. And I was done.

Second, I wouldn’t be able to deny my dwindling condition much longer.

I packed up my things in a suitcase and stayed with a friend’s sister in Burbank for two weeks, wrestling between what my spirit wanted and what my body needed. My health rapidly declining, my body was in starvation mode, unable to digest anything, dangerously malnourished. I had lost all muscle built from weekly gym workouts, a few years of yoga practice, and long city walks, and could easily feel the bones jutting beneath my thin skin. I was too weak to stand in the shower, so I bathed sitting down. I slept on the couch, waking to view the sun beaming outside, rays blessing the balcony. But I was too weak to get out and enjoy it. The most I was able to physically accomplish was walking from the couch to the bathroom. I had to accept defeat. I wouldn’t be getting better. I wouldn’t be able to work. I had to fly back to New York and accept I needed to see my doctor.

People can be really mean, and discriminatory. Like the movers my friend’s sister found to help me ship some of my things to New York, they looked at me with horror, their words thick with judgment as they said to me, “You have AIDS, right?”

“No,” I said. They still kept their distance.

When I boarded the plane from a wheelchair, helped to my seat by the flight attendant, fellow passengers looked at me with dread in their eyes. I could telepathically hear their assumptions: “Cancer,” “Eating disorder,” “I hope whatever it is, it’s not contagious.”

I was rolled off the runway in another wheelchair, but stubbornly refused to remain seated all the way to the entrance. It hurt my pride. I felt humiliated by my appearance. I was a strong person, and my body didn’t reflect that. I couldn’t bear the thought of someone pitying me, the fearful looks alone were hard to take. It was the definition of negative attention. I pushed the wheelchair away, hobbled and limped toward the exit.

The next day, I was once again sitting across from the expensive wood desk, facing the “top Crohn’s expert” in Manhattan who said to me, with a slight panic in his eyes, “If you aren’t admitted to the hospital right now, you won’t live longer than eight days. Even if you are admitted, I can’t guarantee you will survive.”

I sat quietly in the leather chair across from the doctor, staring at the floor as I pondered my decision. I had been in and out of hospitals a few times by now, needing IV drips for dehydration, MRI’s to monitor the inflammation in my small intestine, EKG’s for tachycardia and supervision after passing out. The visits had been stressful, that first one when I was 21 traumatic, I honestly felt death may be a better option than another hospitalization.

After a few deep breaths and what felt like an eternity of silence, I chose life.

Next time I post, I’ll tell you how that went down.

Medical Intuition Tip: Don’t let fear block you from moving forward.

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.

Down The Rabbit Hole

In the previous blog, I mentioned I had been diagnosed with Crohn’s disease and my intuition told me from the start that the doctors had missed the mark. I’m going to take you back to the beginning now, when the relationship with my medical intuition was akin to a buzzing fly – it was there, audible, but largely ignored. That’s when I fell down The Rabbit Hole.

It was 1995, I was living in New York City and this was my second emergency room visit at Beth Israel Hospital. The first time, I was admitted with a 104 temperature. They gave me Tylenol, watched me for a few days and sent me home. The fever came back just as fierce, along with raging intestinal pain, debilitating exhaustion, and flu-like symptoms I had for a few months prior. This time, I had lost 30 pounds and looked severely anorexic, there was no denying this was more than a passing bug.

They ruled out a gynecological problem in a traumatic way. Five male doctors in the ER surrounded me (it must have been an intern opportunity), my legs spread, examining my cooch. They didn’t bother to ask my 21-year old self if I had ever been sexually assaulted. I had. I felt violated again, and deeply humiliated. They tested me for parasites, negative. Weak, feverish and feeling food poisoned, I was confined to a hospital bed for nearly a week. My intuition felt the doctors were pressured to make a decision about me. I was an uninsured, broke college student lying in an overcrowded city hospital without a concerned parent asking questions, without an advocate. Just a bunch of flowers, gifts and cards from friends and co-workers. Diagnose her and get that bed free is what I heard.

When the doctor declared I had Crohn’s disease, he said it with little confidence, as if it were the closest diagnosis he could make. And it was good enough for him because his patient would get discharged and he didn’t have to take sixteen pills a day for the next decade. He never had to see me again.

I researched Crohn’s disease and I didn’t have many of the determining factors. Logically, my mind said, this doesn’t explain my symptoms. Intuitively, my soul was yelling, “Um, yeah, no! This is not the right diagnosis! It’s something you’re eating!”

A few years later, none of the medications prescribed were working. One of the prescriptions created ulcers in my esophagus, and a bunch of other nasty side effects. Increasingly frustrated, I made an appointment with my Crohn’s doctor, considered “the best” expert in New York City. I sat across from his expensive wood desk and said, “I’m pretty sure something I’m eating is causing my symptoms.”

He smiled at me with a look that said, “Aww, isn’t that cute!”

“Every time I eat certain foods, I get sick,” I patiently continued, ignoring his pitying eyes. “When I don’t eat them, I feel better.”

His hands clasped together in a power meditation pose. He dropped his chin and slowly explained, as if in addition to Crohn’s I had a learning disability, “What you eat has nothing to do with your condition.” He smiled like the Cheshire cat, tail flicking.

The good patient that I was, I nodded and dutifully took the medication prescribed. Even though it wasn’t working. Even though it was making me worse. Because what did I know? I was just a lowly, ignorant patient. He was the expert. He should know best.

Medical Intuition Tip: Do not assume because someone is hailed an expert that they will be the right guru for you. Always trust your intuition.

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.