Saturday, June 4, 2011

Working Girl, Interrupted

It's hard to work full-time when your brain and body are unpredictable and unreliable.
But when you're a single, independent twenty-something year-old woman who left everything behind in Texas to chase the California dream, there's no way around full-time work. You have to pay your rent and bills.

What about when your health gradually and steadily deteriorates over the near decade since then? At twenty-one and fresh out of college, your health is adequate enough to get you through all the social and professional norms of life, albeit not without some struggles, but by twenty-nine you are fighting what feels like war with every basic tenet and daily task. Your intuition knows there is something extraordinarily unusual about you, something deeply and mysteriously wrong, but you don't know what that is. You've ruled out Multiple Sclerosis, Lupus, HIV/AIDS, cancer and other diseases.

By twenty-nine, you can no longer walk up the one flight of stairs to get to your desk at work (while your coworkers are laughing at you for taking the elevator). You're calling in sick so often that your boss sits you down for a talk that teeters between concern and disapproval, and you're embarrassed and dumbfounded by your need to miss work so often. All you know is you seem to keep catching the "flu".

During one particularly bad spell (which I now know was a Lyme and coinfection "flare") in my mid-twenties, I had been managing a retail store for a few months when I realized just couldn't stand for eight hours a day anymore. My POTS (which I didn't know existed as a legitimate illness) was so bad that I was leaning onto anything and everything all day at the store, heart racing, sweaty, light-headed, nauseous, irritated, and exhausted. It just kept getting worse, so it was time to say goodbye to a job that had me on my feet all day.

When I sat down with the store owner to give my two weeks' notice, she was hardly understanding, cruelly alleging that a standing job wasn't the issue--I'd never be able to work any job if I was really as sick as I claimed to be. Her eyes even rolled a couple of times.

Well, she was right. Standing upright isn't the issue, and working any job has been nearly impossible. (At least now I have medical tests to back me up.... at least now I'm no longer awkwardly trying to defend some imaginary, yet-to-be-diagnosed illness.) While standing all day was sheer torture due to my depleted, minimally functioning circulatory and nervous systems, sitting at a desk requires brain power that I learned--after transitioning from standing to sitting jobs--that I simply couldn't supply on command.

Granted, even as my health deteriorated into my late twenties, I still had my good days. I still had really, really great days where my brain was sharp and I was efficient. On these days, I was the best employee any employer could ask for. My mind was clear, and my energy gave me focus and productivity that had my bosses praising me during those wondrous times.

But the bad days were awful, and they were unpredictable, hitting me out of the blue. If I didn't call in sick to work (due to my embarrassment at having to miss yet another day of work), I was a boss's worst nightmare. I was unproductive, capable of sitting at my desk for hours in a state of brain fog so thick I couldn't even remember what I was supposed to be doing. Brain fog, ADD, falling asleep at my desk in spite of a full night of sleep, taking lunch breaks only to sleep in my car for an hour, irritability, stomach aches, headaches, crying at work, missing deadlines, sharp chest pains, sharp spleen pains, shortness (and gasping) of breath, and many other symptoms hit hard on my bad days.

The problem was, as I aged into my late twenties, the bad days started to increase, and the good days started to decrease.

The sharp, intelligent, creative, witty, productive, accommodating Leila that bosses hired was disappearing, and they were starting to see this other Leila they didn't like.

I was eager to please, so I faked it as best as I could. But then it got harder and harder to fake.

In 2008, Macy's West, headquartered in San Francisco, hired me as a graphic designer for their visuals and merchandising department. Located in the heart of Union Square--above the famous Macy's department store itself--this position would have been any young artist's dream! However, I wasn't so fond of the twelve-step process involved in getting there.

[Begin Daily Process]: I'd leave my front door in San Bruno an hour before I was due at my desk, drive my car to the train station, fight for parking in a high-rise parking structure, take the elevator underground to the subway, swipe my ticket, wait about ten minutes for the train, board the train, ride for approximately 27 minutes, depart the train, and here it got really fun.... after exiting my train at the Powell Bart stop, I'd fight mobs of people up three escalators to the street level, walk about four blocks uphill, enter the Macy's employee entrance (via the fragrance & cosmetics department no less--holding my breath as I dodged perfume toxins), ride the elevator up eight floors, then take a staircase up two additional flights of stairs since the elevator didn't reach that high. Lastly, I'd walk down a long hall, swipe my card to enter the offices, and then walk down another long hall before arriving at my desk, exhausted and deflated. [End Daily Process]. 

Did reading that description stress you out? Typing it out was traumatic for me. You may ask, well, why not drive to work instead? Well, it costs an average of $25/day to park anywhere near Union Square, but on the days where I couldn't handle the commute, I drove and paid the parking premium.

Arriving at and leaving that job was the single-most stressful commute I'd ever had for any business- or school-related purpose. The frantic rush to park, rush to catch a train, rush to push through mobs of tourists, underground air pressure on my ears, thousands of steps to walk, multiple chemical sensitivities brought on by the fragrance department, and filthy underground subway system sent me into a complete frenzy twice a day. My adrenal glands were chronically shredded. I spent at least two hours a day in fight-or-flight mode.

The hectic city lifestyle seems innately unhealthy to me, yet I know many people who absolutely love it. (Does anyone else notice that it's usually the physically fit who love the big cities?)

If I knew then that I had chronic Lyme, virtually no natural killer blood cells (meaning my immune system worked comparably as poorly as that of an HIV/AIDS patient), a diseased thyroid, POTS, and chronically activated viruses and parasites, I would have at least understood why this commute and job wore me out both physically and mentally. But I knew none of that. What I knew was that, at 26 years old, I needed the professional experience that would look good on my resume. And this was that kind of job.

But.... was it worth the price? My relationship with my boyfriend began to suffer, because I never wanted to leave home after work or on weekends anymore--and he, by contrast, loved to venture into the big city as often as he could. Also, just to get through the workday, I developed a serious addiction to Frappuccinos (which I now know are pure poison to anyone who suffers from my conditions). Along with my daily Frappuccino, I usually got a brownie or cookie along with it, and ended up gaining weight and feeling even sicker.

The following year, I landed a quintessentially career-boosting position as a one-woman communications strategist for a non-profit on the other side of the Bay. The best perk? I could actually drive to work and park my car at the office building! But while the commute was easy, it didn't take long for the actual job to break me. This was the last job I've had.

Undoubtedly the most stressful job I've ever had, I headed and basically ran the communications department solo. My job involved in sales, partnership acquisition, graphic design, website redevelopment, marketing, customer service, newsletter writing and editing, hiring, managing and training colleagues, and more; not to mention that I was micro-managed by a CEO with a temper that put off all of his employees. Office morale was low, impossible deadlines were set, and I often worked late.

While I started to finally feel like an accomplished professional with a resume to be proud of, I also started to develop a keen awareness that I'm not cut out for the kinds of jobs that incite nervous breakdowns. This job was when my health seriously crashed.

Beyond frustrated, I started looking elsewhere for work in late 2010 when, as luck would have it, I got the infamous diagnoses of my chronic diseases. So I didn't have to cite "nervous breakdown" as my reason for quitting, after all. In February of 2011, I cleaned out my desk and started the intricate, multi-layered process of healing.

I've come a long way in repairing much-accumulated damage. But in spite of my short-term disability checks and savings together covering all my needs, familial pressures for me to return to work have been high. My dad's single highest priority for me has always been career and financial success.

A Syrian villager who came to the U.S. with mere pennies, got his M.B.A. and went on to become a successful VP of an international business, my dad's professional goals for me far exceed my own. By comparison, while he has never, ever pressured me to marry and start a family, he has openly disapproved of my career choices and low-ball incomes steadily over the years.

What can I say? My dad is a technical-minded, driven man (ISTJ type) who prefers a life of comfort and luxury, and he wants the same for his kids. By contrast, I'm creative, with skills like graphics, writing, music and singing, and I'm perfectly at peace being able to afford just the basics in life. (He once tried to convince me to study business & finance in college, but instead I got degrees in journalism and graphic design, much to his chagrin and lament, since those fields pay notoriously low).

While my band, Opal Axis, doesn't profit from our sales, we love what we do. (And by "what we do", I mean play together for about four to eight hours per month, occasionally recording songs, but not performing anywhere because I'm not well enough to stand and sing). Unfortunately, my dad doesn't understand why I'd put so much effort into a band that doesn't make money. But to me, success does not equal money. Success, to me, is defined by joy, inner peace, health, and personal growth.

So yes, he and I are very, very different. And now that I'm entering the fourth decade of my life, (yes, thirty years of age is entering the fourth decade of life) I just wish he'd accept the decisions and lifestyle I choose--after all, I've gotten this far as an independent, single female. But he can't, and he won't. And I accept that. He is still extraordinarily loving, communicative, and a damn good father.

Since Lyme is never completely cured, only kept at bay through lifestyle management, I'm painstakingly aware that any return to a high-stress job could bring on a relapse. In fact, I'm fairly certain it would. Any kind of stressful event or trauma can--and often does--cause seemingly "cured" Lymies to relapse. And since I've been sick with most of these infections virtually my entire life, I'm apprehensive and want to tread carefully.

I know what my body is and isn't capable of, so I realize now that when I am ready to return to work, the most important facet of my career will be flexible hours. Ideally, I can have the kind of flexibility that allows me to sleep an extra four hours on insomnia-filled nights, because I know that if I'm forced into an office at a certain time after not sleeping adequately, my fragile immune system will collapse...... and I'll start drinking coffee again to get through the workday. And making exceptions for coffee when I'm falling asleep at my desk will lead to making exceptions for sugar and dairy because I don't drink my coffee black, and other bad habits will slowly creep in and take over like the weeds in my vegetable garden.

Luckily, there are plenty of jobs that offer this kind of flexibility, and even better, they're in my fields. I could design graphics or even write a book from the comfort of my own home (and I do love to write!) Also, I'm inching closer to getting certified in Myers-Briggs so that I explore being a MBTI personality coach.

While I believed, just a short time ago, that I was a career-oriented woman--regularly updating my Linkedin page and building my career network while sipping my vanilla latte--I don't see my current lack of career orientation as a weakness or as defeat. Nobody said we all have to be cut-throat, working longer hours, fighting for raises, climbing the career ladder all in the name of (face it) more money in our pockets. Society may tell us career is everything, but I feel that is misguided.

I look forward to the day I can be my own boss, and dare I say, even be a mother. 
Yes, I'm aware that motherhood is far more stressful than an office job, depriving you of sleep and independence, but it's more worth its sacrifices; and being my own "boss", at least I'll have options on how to raise my children. I do not delude myself into thinking motherhood will be easy for someone with chronic illness, so I won't go down that road until my health significantly improves, but since I feel in every fiber of my being that I'm cut out for it, I do look forward to that day. It could be the most important job I ever have, and it pays in ways far richer than dollars.


  1. You have explained this so well. After 35 yrs as a nurse, 20 of them battling "CFIDS" which turned out to be Lyme...I remember having to give myself pep talks at the time clock, had to drag myself onto the unit and often felt I was much sicker than some of the patients I was caring for.

    I beat myself up that I must have some "personal weakness" that caused me to be unable to function as well as my fellow nurses. I could never do anything else on the days I worked and could never work more than a couple days in a row, defintely not part time.

    So I am also now on disability but some always keep "recommending" jobs they feel I could do. I can't, I am worn out, my immune system shot. I'm done.

  2. I meant "full time" I worked per diem for many years otherwise I couldn't have worked at all.

  3. Wow I would NEVER want to work in a big city. That stressed me out just reading about it. Hopefully someday your dad will realize that happiness isn't measured in dollars. I think you're on the right track with your life. -Hubeez

  4. Leila, very well written. Your chronicle tells the story of so many of us that get stripped of our life and freedoms one dream at a time. If we lost everything at once it may be too hard to handle. Your description of the journey to work perfectly describes what we face every day. I can barely walk to my car from the front door most days - so your journey as seemingly simple as it is overwhelms me just thinking about it. I really admire your courage for sticking it out as long as you can to realize your dream. There is only one definition of success and wealth to me any longer - MY HEALTH. period. Gary Glaser