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.

 

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.