I'll Never Be Able to Work Full-time Again

Life gifts us with the perfect experience of living. Times are filled with joy and laughter, but conversely, they’re also filled with sorrow and pain. That is the promise of life. The issue isn’t life itself, but it is our perspective about it that troubles us as free-spirited humans.

Today I found myself needing to shovel snow. The storm began overnight, but the heaviest snowfall would occur during the hours I’d need to pick up and drop off my children at school. Selfishly, I’d been hoping school would be cancelled early in the a.m, but alas it was meant to be that they go for a day of education and I be tasked with snow removal duties.

At first, shoveling was quite nice. There's a certain zen to repetitive, silent work. A rewarding warmth that fills one with personal satisfaction arrives; or is that a hot flash?

After about thirty minutes of shoveling, I began to grow a bit tired but I still trudged onward - after all, I had a job to do that could be done by no one else.

After fifty minutes, I began to fall ill. As a person who has multiple chronic illnesses, I find it difficult to do certain tasks. In this case, the actual shoveling isn’t the issue - but rather, the problem is my body’s inability to correctly maintain homeostasis during movement. Checking in with my various body parts, I found myself sweating heavily under my coat. Nausea flooded over me like waves crashing into the shore during a temperamental storm. I was overheating. Quickly, I stripped off my gloves and hood, exposing my hands, head and face. I began to experience relief. It’s important to cool down in stages when outdoors in frigid weather, because if you cool too quickly you’ll have the opposite problem since you’re covered in un-evaporated sweat. After a few minutes, the nausea intensified, forcing off my coat. At this point, I’m shoveling in one layer with only a beanie to cover my bald head.

A few cars passed me at the end of the driveway completely puzzled and even concerned at the fact that I was casually shoveling in just a single layer of clothes, but if they only knew…

Finally, I finished the driveway and realized the tops of my thighs were going numb, but the rest of me felt as if I were melting. Quickly, I gathered my coat and gloves from the ground and headed inside.

Immediately I noticed a wooziness, like I was going to pass out. I needed to sit down, but before I could I needed access to water and electrolytes. I felt dazed, sickly, as if I’d suddenly come down with the flu. As quickly and adeptly as I could manage, I grabbed a mug and filled it with water and heated it in the microwave. I got a separate water glass and immediately filled it as the other water heated. Chugging room temperature water, I simultaneously opened the cabinet and pulled out a package of hot chocolate mix. I don’t know if you know this, but Land O Lakes makes a vanilla hot chocolate that has twice the electrolytes as a large bottle of gatorade in a 6 ounce serving. The more you know…

The microwave dings, I mix in the packet, and I take both cups to the couch before collapsing on the seat. I have an overwhelming urge to strip off my sweater because I realize that even after shoveling in the snow without a coat, I’m still overheating. I remove my sweater and sigh, catching a glimpse of my rising and falling cleavage in my skin tone bra. At this point I’m mentally pleading with my stomach just below my breast, “Please don’t throw up, don’t throw up, you can’t throw up…”

Sitting there, I look out the window and sip the hot chocolate in between swigs of water. This continues for about fifteen minutes as I rest and reflect.

The reflection ended up being a good distraction, but only reminded me of something extremely important with which I’d been grappling, something I’ve been putting toward the back of my mind for quite a long time. As I finished my beverages it truly sinks in that what I had feared for a long time has come to fruition: due to my health, I will likely never be able to work a traditional full-time (or even part-time) job again.

Conveniently, I’d just had my first job interview in years about two hours prior. The man I met with needed an executive assistant part-time, and he seemed genuinely decent enough. The job initially advertised the need for scheduling, phone calls, making travel reservations, and responding to a variety of correspondence. As he talked, it became clear he wanted much more from a candidate in this 9am-1pm job. Essentially, as the duty list became longer, so did the need for words like “accountability” and “commitment”. While I pride myself on being skillful with both of those attributes, it dawned on me that not only is this particular opportunity something I do not want, but working in the current environment is something I could not deliver on without sacrificing my own well-being. The level of responsibility being the sole assistant to a CEO of a company who said he’d require frequent reminders, an “extra pair of eyes” at the office (to more or less police the young office personnel), and a “collaborator” for him to extract ideas from, in addition to filling the executive assistant role, would consume every ounce of my time and energy, leaving me with none to conserve for myself.

Could I manage to do the job? Absolutely. Could I do it the way that American employers need it done? Not a chance. The sad truth is that in order to work in this country, I’d have to subscribe to a model of sacrificing my personal health and body for the sake of even trying to make an American job work. Each position I’ve applied to expects you to do three jobs in one without adequate pay or time off. Though this job seemed to be slightly better, and the CEO himself seemed understanding and polite, the expectation in the American workforce is not conducive to hiring people with disabilities. “Like it or not,” I thought, “I am a person with disabilities.”

In shoveling my driveway for one hour, I immediately needed another hour to rest and replenish - or I likely would have vomited and been bedridden for a few hours at minimum. Though I’m still not accustomed to being disabled, I’m becoming more realistic with my expectations. I’m discovering my limits and setting boundaries with myself so I receive adequate care. I rest so that I will one day be able to see my children grow into adults and hopefully become a grandmother one day. I rest because if I don’t, I fall even more gravely ill.

These are the plain realities of my condition, and millions of others like me. Many people in my life assume that I’m “being negative” about my condition and that “positive outlook” will conquer my many diagnoses. To them I would say: I am grateful you do not understand the position I am in, and I am glad you are able-bodied enough that a positive outlook works well enough for you. However, when it comes to my own life, if you know me well you’ll know I am a person (who albeit struggles with anxiety) who genuinely maintains a positive outlook on life, who extracts joy out of every day, and who doesn’t live a day without experiencing some form of faith and hope. In fact, most disabled people are among the strongest and most disciplined, joyous and most positive of us all. Yet, our institutionalized ableism still does not allow most able-bodied individuals see the forest beyond the trees. Not to mention, there comes a certain point when facing the truth is more beneficial and heroic than suspending ourselves within the childish denial of hope.

I am proud of myself for facing such a difficult truth. The truth of realizing that America will not, in my lifetime, be for people like me or my child. It is not that we have nothing to contribute, no work to do, but rather that our society doesn’t value the type of work and ingenuity we bring to that particular proverbial table. During my time of disability I helped launch a business, I became a library trustee, I’m on a social justice alliance board, I’ve written countless musings and literary works, consulted on a friend’s business, and designed 2 fully functioning websites from scratch. None for which I was paid, yet are valuable skillsets none-the-less. A natural inquisitive, curious gal brimming with ideas, I bring a hell-of-a-lot to the table. It’s just that the culture in America doesn’t value my skills enough to allow for flexibility in schedule, rest, and a life outside of the capitalist machine. A life for which I do not pine, nor do I intend to further by feeding my flesh and bones to its forever hungry, intricate insides.

Thus, I’ll never be able to work full-time again. However, if it means the preservation of my physical health, my creativity and joy, and my spirit, have I really lost anything important at all?

*NOTE: I’d like to note that I am exceedingly privileged, even as a woman with chronic illness and disabilities. What enables me to continue to pursue my dreams of writing and my path to best health is the full financial support of my partner. In our early days, we decided that we wanted one parent at home while one pursued their career. As my husband is an engineer and I was (at the time) without a formal education, the choice was a no-brainer. The situation was a lot more nuanced than that, but ultimately I stayed home to be the primary caregiver to our children and to run the household (and is also a story for another day). I am deeply grateful for this opportunity to be allowed to explore life, and to rest and enjoy a life that I otherwise would not have had. A huge thanks as always to my partner for being my biggest support and number one fan.