Nobody cares about fellow feeling, it’s all about freedom
Really need His Kingdom
But no one is listening, there’s just noise and tension
Can’t even stay tuned enough to pay attention. Can I get your attention?
Such a short distance between evil and good
Who’s really the villain? Who’s friend or foe?
How you really feeling though?
Will I remain misunderstood? Will you stay up to no good?
Folks out here dying and becoming numbers and toe tags
Can’t even cry anymore. Must cry quietly in my heart
The angels flap their wings to a soulless crowd
Humans cut each other’s hearts out
Annihilation is nothing but a word,
all because we have opposing opinions and yours is right,
and theirs is right
And mine is whatever you say it is
No matter logic or consequences,
no matter the souls who mattered to someone
who mattered before they became numbers
Mothers and fathers, sisters, and brothers—
out here becoming epitaphs
And for what?
SMS 3/26/2021 aka Cerebral Introvert
For days I’ve tried to come up with the right words for this topic, and I can’t. The past two years and nine months brought out the best in people for maybe a good three weeks and then it prompted the worst in people. My heart drops and breaks every time I turn on the news because it’s a given that if I turn on the TV, I’m going to hear what happened, who did it, and who died. That is every day, and that is horribly sad. Moreover, every time I ask myself, How much more chaotic can things get or why in the heck would someone do that or what in [insert word of choice here] made someone think that way, I know that it isn’t the last time I’ll ask myself these questions. It isn’t the last time because something else unimaginable happens days or hours later.
Evil has permeated the earth since the beginning of time. But maybe it’s the fact that ever since this decade started, we haven’t had a chance to even catch our breath. It has been tragedy after tragedy, event after event. At this point, people are just…emotionally fatigued. No doubt, we’re all going to need a therapist’s couch after this decade. Just being honest.
In one word, The World is ____ (fill in the blank). How do you contribute to societal norms? How do you buck societal norms?
So, here are the things on my What Did You Want To Be List
Sadly, I never became Sheila E.
Although our 6th grade band director said the drums and flute were my strong points, my mom didn’t want me in a band. Almost all my family is musically inclined though, and mom played clarinet during her school years.
Didn’t happen. The nearest class was about thirty miles from home. And we just couldn’t afford classes at the time.
I bought a basic acoustic guitar and learned one note. Yup, that’s about it. Thanks, Mr. You Might Remember, for teaching me that one note.
I had a reputation as a child for dancing whenever my grandmom had company. You know how it is when grandma wakes you out of your sleep and says, Come on baby, Auntie So-n-So wants to see you dance. Then you’re whiny about it until your favorite song comes on. For me that song was Bad Mama Jama by Carl Carlton.
Mary Lou’s face was everywhere. As gymnastics grew more popular, a lot of kids started the sport, many of them aspiring to be the next Mary. My friends and I somersaulted, back bent, and double rounded all summer. Mom said all that flipping around was dangerous, and she had a point because my friend broke an arm during a back flip.
This dream began at maybe five or six? It continued through college. And my arthritic fingers still wish to play the piano one day. I learned the bare basics from a musician attending the same college, but that’s about it.
Senior year. Lots of poetry, poetry recitals, and essays. Rudyard Kipling’s poem, If. I was hooked after that poem and declared myself a poet.
I’ve dabbled with story writing since I was sixteen and even drafted a manuscript during NanoWriMo several years ago. However, I can’t say I’m inclined to fully polish a novel right now.
Five or six years ago, I had a family friend come to me and ask if I could help her write her memoir. As I’d never done anything like that for anyone before, I was reluctant. Nevertheless, the person insisted and assured me that I could do it. Word got around and I did a few more memoirs for people who just wanted to have their legacy in writing for their kids and grandchildren. Then my local library recommended me to someone who was looking to complete a manuscript for self-publishing. I learned so much during the latter project and took on yet another project this past January.
Writing is a series of love/hate encounters. Most times, when lightly editing or polishing for others, I absolutely love it. Yet, sometimes when I’m working on something, especially for myself, I hate it. Then it all comes back full circle to love.
I’m the person who got old books from teachers and passed out torn sheets as tests to lifeless dolls. Then I’d grade the papers and scold the dolls for flunking.
I got a call in 2017 for a position as a temporary substitute at an early learning and development center. Soon, temporary part-time turned into full-time. And no, I never had to scold anyone—except for that incident on my first day. Little C bit off a chunk of blue chalk during wash up time. It was less of a scold and more like, “C, is something in your mouth? Why is it blue?” And after fear of being fired two hours into the job, I grew to absolutely love that place. EHS will go down in history as my favorite work experience.
The cheerleading coach pulled me aside one day and asked if I’d thought about trying out for the team. I said yes, I had. Then I went home and told mom. Can you guess what mom said? See aspiration, GYMNAST.
Anything, anything involving music
Unfortunately, I can’t sing or play an instrument. But if I could I’d write songs, sing songs, play songs, and produce music. In essence, I’d be one bad butted musically gifted machine!
Anything, anything involving theater
They say it is never too late.
We’ve established that I’m shy, but I wonder if the opposite would be true on stage. I don’t think I’d want to be “the star” but I think I’d enjoy being a part of production.
Basically, anything involving fine arts
Yes, that wraps up what I’ve been typing for the past thirty minutes.
Since medical office technology was the bulk of my studies in college, I decided to brush up during the pandemic with a focus on coding. The course was daunting but fun. I enjoyed it so much that I researched the requirements for certification and the length of time it would take to complete it. The course work isn’t that long, but then there’s the certification test.
If given a choice now I’d probably choose coding instead.
I was also that kid who picked up blank slips from our local bank, sat at my grandma’s desk, and pretended to fill out forms. I entertained myself this way for hours.
I heard it pays fairly well. I’m in the wrong town for it, though. I say town because where I live is not a city, by any means.
I love words and I love books, so this seemed inevitable. The closest I got was as a library assistant during college.
My kids say this field is perfect for me. I don’t know if that is a compliment or an insult.
What did you want to be when you grew up? What do you want to be/do right now? Have your dreams evolved over the years; how so?
What. Did. You. Do. To. Me!?” That’s all I wanted to know, because I’d turned into a crying, emotional mess, and I was certain it was from surgery.
My doctor assured me that the emotional rollercoaster I was on would eventually stop and let me off, and I hoped so. Having lupus and being young, she was hesitant to start hormone therapy. However, she said she sensed a little anxiety and recommended talk therapy. I wondered where she’d gotten the impression that I needed to tell my business to somebody, and I gave her the side eye. “Look, I get it. You want to do it all, or feel you have to do it all. But there’s nothing wrong with a little talk therapy,” she said. “I’ve been going to Doctor A for years.”
I’ll admit, there was a lot going on. Not necessarily in a bad way, just in a super busy, pulled in all directions, always ON type way. At work, I was determined to not let lupus define me, so I worked extra hard to prove to supervisors, and mainly to myself, that I was an asset and not a liability. It paid off in bonuses and raises, but all that proving myself took a toll on my body.
At home, I was juggling my responsibilities as well as those of my spouse and often joked that I was a married, single person. I was exhausted and hormonal and overwhelmed. But depressed? No, my stuff was circumstantial. I felt if I adjusted my circumstances—health, employment, boundaries, everything would be fine. Anxiety? Possibly, but even that, in my opinion, could be explained. I had a high-strung job, likely consumed too much caffeine, didn’t sleep enough, and had super active kids. Who wouldn’t be stressed out?
Nonetheless, a week later, I found myself in a therapist’s office.
“Anyone in your family suffer from depression?” The therapist asked.
“Yes, on both my mother’s and father’s side of the family,” I admitted.
The truth was that depression in my family was like 8 out of 10, but I didn’t care to divulge that information. “I mean, I’m not sad or anything. I love life.”
She nodded and made a notation. “Depression doesn’t always mean sadness. It can also come in the form of fatigue or lack of interest. Do you have any hobbies.”
I could talk about writing and art for hours, but we only had 45 minutes, so I mentioned writing projects I was working on and a blog I managed. She clicked on the blog (a previous one) and after reading a bit of it bookmarked it. My blog posts became animated topics of discussion in subsequent visits, but during that initial visit I was tentative as she closed her laptop and circled back to the topic at hand. Moreover, the idea of depression being more than sadness was profound to me because if it wasn’t that then what was it? I told her that I was driven and probably focused too much on work, that I was tired and somewhat stressed, but that I seriously doubted it went beyond that.
“We have a test that can aid in diagnosis,” she said. Would you like to take the test? It takes a while, but it would help in deciding what path you want to pursue as far as treatment.” She was patient in letting me feel like I was in control and in giving me time to decide. I agreed to the test, as well as the price, because my insurance plan didn’t cover it. But if several dollars were what it was going to take to prove my point, then that was what I planned to do.
In hindsight, I was so misinformed. I was certain that depression meant no longer having interests, that it meant seeing a deep, dark pit and no silver lining. I thought it meant sleeping all the time with no incentive to dress or get out of bed and no self-will or motivation to navigate through life. And sometimes, depending on the severity, it is. But at the time, I didn’t feel like that was me. I had interests. And I had a knack for flipping negativity around with dry humor and the brighter side, even if that required faking the funk for a few days. I got out of bed every morning (off four hours or less of sleep, mind you) and seized the day, even when I didn’t feel like it. So, I figured I was fine, and I assumed the test would say I was fine. Maybe a little anxious, but for the most part, awesome.
At the next session I again sat in the wing-back chair, eager for my results.
“S, you have generalized anxiety disorder.”
No surprises there, I thought to myself.
And then came, “You also have clinical depression.”
For months I declined medication, content to come every couple of weeks and talk myself through whatever was stressing me with a neutral listener on the other end. But eventually I agreed to give medication a try. I was put on the lowest dose of an anti-depressant that made me sleep for three days and seemed to unplug my brain, thus hindering my creative endeavors (or at least it felt like it did). Still, I forged on and continued with the medication for another four years.
Do I still feel that some of mine is circumstantial? Yes. Auto-immune disease, separation, lack of employment, and global unrest are recipes for depression and anxiety. But I also learned and came to realize something. Depression comes in many forms with many masks. Even truer, one can perform daily tasks and still suffer from clinical depression. Depression can hit anyone at any time.
Let’s break the stereotypes and stigmas and check on each other. Let’s take care of ourselves and our mental health. And let’s make sure that even the perceived strong ones know that it is okay to not be okay.
On Functional Depression
Do you sometimes feel like you’re “performing” as in others either don’t realize or recognize your depression? How long have you grappled with depression? How do you navigate other responsibilities and obligations while dealing with your depression?
You may be interested in what the experts have to say. Here’s an article I read online pertaining to high-functioning depression.
It was October. I was four months pregnant. And we were at the height of inventory season where I worked as a department manager. As I sat looking at my watch, wondering how long it would take me to make the 80-mile trek back home and if I could possibly get back in time to finish a couple of projects, my doctor came in with his clipboard and my latest lab results.
“So, do we know what I have yet?” I asked.
Pain wasn’t anything new, but I’d found myself unable to button my two-year-old’s coat and her holding my hand had become excruciating. I was tired all the time, sick with something all the time, basically unable to can more and more often. I’d been referred to a rheumatologist and had been seeing him for several months. He’d already ruled out Lyme disease and fibromyalgia as well as made a notation that anti-inflammatories were the only thing that seemed to work. I’d noticed on a few medical records since I’d been coming to him the words Undifferentiated Connective Tissue disease.
According to other clinical professionals, I definitely had arthritis. I’d had arthritis since I was a kid, except back then my primary called it juvenile arthritis and assured my mom that I would grow out of it. But I never did. In fact, I became the queen of wrapping my achy joints with anything that would wrap them—belts, bandages, sashes. Once, I even wrapped my toes. And it didn’t take much to set off the ache, even back then. A round of kick ball with friends, a walk to the store, a few blocks on my bicycle. By the time I reached my thirties, I was at my wits end and I needed answers.
Dr S gave me answers, although not the kind I wanted.
“You have lupus,” he said, plainly and simply.
“I don’t want that,” I said almost immediately in response, as if I could just pick something else.
“Nobody does.” He patted me on the shoulder as I held back my emotions.
I knew people with lupus. I saw how it affected them and their lives. And I think the main issue for me at that moment was the thought of treatment and medication, which is exactly where Dr S took the conversation next. He scribbled something on a prescription pad and handed it to me. I asked how long I would have to take it, and he said for the rest of my life.
When I returned to work and handed the prescription to my local pharmacist, she said she couldn’t in good faith fill the order. Not with me being pregnant. “This is a potent drug, and frankly it’s toxic,” she said handing the paper back. My doctor was livid at my next checkup but opted for a regimen of prednisone throughout my pregnancy instead as I’d begun to have several flare ups. Prednisone is its own breed of angel and devil, but I digress. Back to that October day and initial diagnosis. I made it to work around 2 pm to a frenzy of demands and deadlines. I managed five departments, and none of them had been maintained in my six-hour absence. As luck would have it, my associate had called in. Moreover, the person they’d pulled from receiving to help wasn’t familiar with the area and unintentionally made an even bigger mess which created even more work. The whole day was overwhelming to say the least. I was exhausted, sore, sad, and…stubborn. I spoke with HR because she already knew some of my situation and had a sibling who suffered from lupus. In tears I told her the verdict, and she told me to go home, take a nap, and come back in a couple of hours. Which is what I did.
However, that also meant being even more behind and having to work late. When everybody else said good-bye at four o’clock in the afternoon, I stayed until one in the morning to catch up. I made it but working in lower-level management became more and more difficult and stressful for me, especially without an assistant. So, a year later, I stepped down to lead associate. And six years later, I retired—from that job at least.
Unfortunately, arthritis continued to wreak havoc in the form of rheumatoid and later osteo. In addition, lupus’ tentacles reached out to my heart, kidneys, liver, eyes, and a host of other organs. What those three didn’t do, fatigue did. Prednisone eventually led to pre-diabetes, and diabetes exacerbated the fatigue. I was weaned off prednisone, which amped up inflammation. Inflammation and constant “fight or flight” also caused fatigue. So did kidney and liver damage. And I learned just recently, so does heart issues. Auto-immune disease and arthritis created an endless cycle of tiredness.
“You’re always tired,” my husband said a few months into my diagnosis. “You don’t do ____.”
Frustration set in. Hurtful words sank in deep. Prednisone had taken me from a petite, short person to what medical professionals deemed a morbidly obese person. As if I didn’t know, well-meaning folks reminded me of how big I was getting with comments like, You don’t need another plate of that. Wow, you sure are getting fat. Why is your face so swollen?
My self-esteem suffered and I felt misunderstood. Therefore, I slowly went into isolation. Some, not all but a great many, of my friends and family just couldn’t understand WHY I couldn’t get myself together, why I was gaining weight (aside from being pregnant with my second child), why I found it difficult to work at times, why my usually clean house wasn’t clean, why lupus had become such a huge part of my everyday life. It took my husband attending a lupus support group meeting and hearing other people’s stories to somewhat understand what a typical day in the life of lupus is like. Moreover, as my condition progressed, my parents finally came around to the fact that, no it isn’t “all the time ain’t it” it’s simply…life-long.
As friends and family attained knowledge, they understood aspects of lupus better, but it still affected relationships. My husband and I are no longer together, friends stopped inviting me to as many events, I began to feel solitary, especially during flares. Auto-immune disease affected jobs and security status as well. I had the job of my dreams as a substitute early learning and development teacher but became sick. Moreover, because of an immune disorder, I was not able to get an updated MMR vaccine (measles, mumps, and rubella), so I was let go, despite documentation and recommendation from my immunologist and the CDC. Overall, I understood, but I was sad to leave that line of work; I loved it.
I tried self-employment but developed a heart issue that hasn’t allowed me to work most of this year. And yes, I have been denied more times than I can count for disability. The thing with my lupus and arthritis is that when I’m down, I am DOWN; but when I’m good, I’m invincible. On a bad day (or week), I can’t even turn the doorknob to my bathroom, let alone drive or comb my hair or do basic activities that one often takes for granted. On a good day, you’d never know just by looking that something is wrong.
Therefore, I have my smile and wording down to a science. I’ve had years of practice and liken it to preparing for a performance on stage.
“How are you?”
“I’m good, how are you?”
1,2, 3 smile
Some are more perceptive, at which point it goes something like, “Are you sure? How are you really feeling?”
“Hanging in there,” I say with a thumbs up and convincing smile. The truth might be, I wrapped an Ace bandage around my head because my head hurt so bad, or I just got discharged from the ER, or methotrexate made me so queasy on the stomach over the weekend that all I could do was ride it out.
But usually, “I’m good” works well enough and we all carry on.
YOUR TURN:If you suffer from lupus or other auto-immune diseases, how has your life changed since your diagnosis? How do you get through flare days? Do you know of any resource centers, informative organizations, or groups that might be helpful to others dealing with auto-immune diseases or chronic illness?