First, I Need You To Believe Me
By: Kelli Lynn Grey
Tags: Health, Cancer, Culture, Neurodiversity, Society

First, I Need You To Believe Me

Photo by Molly Belle on Unsplash

Lately, my social feeds have been crowded with debates about wealth, health, and the various ways society is shifting its approach to these areas. If the topics of financial equity and health equity interest you, here are some things about me that you might like to know.

My debts are bizarre.

Say the word “debt,” and I think most people think of student loans and credit cards. Or maybe mortgages and cars.

While I have a few ordinary debts, the vast majority are actually to 26 people around the globe, a couple investors, the state of Georgia and the IRS. They are all in connection to an LLC I owned with my now ex-husband.

It has since been administratively dissolved, and I’m in the process of fulfilling my obligations to it — by selling the remaining inventory, completing the inventory for which clients have already paid, processing the requested refunds and making payment arrangements with the investors and the government.

Many people suggest that I file bankruptcy, but I’m doing everything in my power to avoid this.

I have no assets to liquidate, and I don’t want to completely short the clients with whom I have forged personal relationships, from whom I’ve already collected money that has helped my family survive.

Likewise, I have spent the past year both establishing and repairing my damaged, limited credit, and I don’t want to see those efforts completely squandered by filing for bankruptcy.

I already carry stress because I know some of my clients feel abandoned now. The stress of actually abandoning them is far greater than the relief of having the debts potentially wiped away. Likewise, any satisfaction that might come from having my debts wiped clean would also be dampened by the knowledge that my hard-earned credit would have also collapsed.

As things stand now, I’m hopeful that I can soon qualify for a loan to help me with some of my unusual debt. I’m also hopeful that better credit will mean less expensive and more diverse housing options for me in the future.

About housing . . .

I pay more for my home because I don’t qualify for less.

I currently live in a beautiful apartment in a wonderful part of Atlanta. However, it’s about $400 more per month than I can comfortably pay right now.

I’ve found places in the area that are closer to my price range, but I don’t qualify for them — either because my credit doesn’t yet meet the criteria for entry, or because my non-traditional income turns off management agencies, or because I can’t swing the up-front cost of two full month’s rent.

My current home remains worth the extra cost to me because I’m renting from an individual with whom I’ve forged a personal friendship.

As a result, she accepted a reduced security deposit and allows me to pay weekly rather than all at once each month. She also provided me with a much-needed buffer period when it came to switching the utilities to my name.

My home is also located within Fulton County, which qualifies me to receive medical care locally at a reduced cost — a value that has the potential to offset my extra rent. It also places me in close proximity to resources for my special needs children.

While my children and I are living within the safe haven this landlord has provided, I’m working not only on rebuilding my credit but also on increasing the income that I generate independently as a writer.

And about the writing . . .

I work full-time but am not traditionally employed.

As a freelance writer, I have clients who pay when the assignments they’ve commissioned are complete, and I have platforms that pay me monthly based on readership.

Finally, I have the goal of securing clients who place me on retainer, paying me up-front.

In each case, I’m considered to be an independent contractor, meaning that none of the clients are my employers. Rather, I work for myself.

This means I have a lot of freedom regarding when I work and how much work I do.

It also means that I have no traditional benefits and that I have a much harder time qualifying for credit, housing, loans and even unemployment benefits. While it’s not impossible to qualify, there are more hoops to clear and more time to wait.

My income is also highly unpredictable.

Over the course of 2020, I’ve earned less than a grand some months and well over 6K others. I also start each week at zero dollars and work my way up to whatever I need.

It’s an exhausting process, fueled by relentless networking across social platforms and “cold” emails. Once securing the opportunities is done, fulfilling them is doubly tiring. However, it’s also rewarding.

I love to write. I love to shift the way society thinks. I love to influence the choices individual people make, as well as the policies politicians pass. And my particular style of writing allows me to do all these things.

I’m a copywriter for organizations that need marketing content.

I’m a journalist reporting on education, civil rights and the drug war.

I’m an essayist and poet whose creative work is a deeply personal exploration of health equity.

I’m also a curriculum designer whose work helps determine what the next generation will learn in school.

I’m paid by big-name organizations and rising start-ups that include Wellstar Health System, Healthline, Mashable, Eloquent Magazine, Inside the Jar, Education Without Limits and Medium. I also collect money from the sale of my book Queen of Wands.

I’m aware that the key to making the most of engagement-based platforms is posting daily. I’m also aware that the key to making the most of assignment-based pay is to establish long-term client relationships rather than stringing together a bunch one-off pieces.

Each of these steps requires consistency and time.

This year, I was much worse off financially before the pandemic hit. When it arrived, I didn’t receive a stimulus due to having filed 2018 taxes with my ex-husband, and I didn’t qualify for unemployment assistance either.

My financial insecurity and frustration grew, but I’m finishing the year with a series of months in which I average a $5k income. This is good for me, but it’s barely enough to meet my debts, bills, child-related expenses and other costs of living right now. It’s also not nearly enough to put anything toward savings or investments.

But, as I continue building client relationships and improving my use of engagement-based platforms, my earnings will continue to grow, and I will have enough to create a cushion for myself.

I will also have the satisfaction of knowing that I finally achieved the successful freelance career that has been my professional goal for literally as long as I can remember.

Unfortunately . . .

What I regard as success often gets met with misunderstanding and judgement.

It’s a real bummer explaining my accomplishments and ambitions to people and hearing things like this in reply:

Okay. But you are making things harder on yourself by “coming at life sideways.” It’s okay to work a normal job for a while.

OR

You have cancer. You need chemo. Focusing on your career, managing your own finances and providing specialized care for your children right now is idealistic but totally impractical. Accept whatever help the government and your family will give you. Force your ex to be financially accountable. Do you want to die?

Comments like these are built on the assumption that we all experience the world similarly in regard to our thought patterns, abilities, challenges, emotions and priorities.

Unfortunately, this makes them examples of ableism that discriminate against neurologically divergent people — those of us with autistic traits, sensory processing differences, behavioral differences, developmental differences and/or psychological conditions.

No person’s experience of neurological divergence is exactly the same, but we all suffer from a shared lack of neurotypical privilege — which is to say that:

Society is not set up to reflect our natural priorities and preferences for navigating life. People fail to actually believe us when we explain that our different ways of thinking and behaving aren’t due to fearing something, seeking attention or being stubborn/lazy/selfish/sad. Likewise, well-meaning authorities don’t understand why we’re at peace with the way we are and present us with a borage of ways to “move past” what they perceive to be the limits of our neurobiology.

Our way of navigating life isn’t inherently inferior to anyone else’s.

However, the steady stream of criticism, questions and misguided attempts to “help” us that we face do lead to severe anxiety and depression that interferes with our ability to self-accommodate and succeed at life on our terms.

The eve of my 27th birthday, I was prepared to kill myself over my inability to continue going against my intuition and forcing myself to do what perceived authorities told me was “best.”

Alongside my decision to begin using St. John’s Wort, the key to my survival was granting myself permission to stop force-fitting my life.

This marked the start of an on-going period of re-shaping my relationship with myself, with my friends, with my family and with society as a whole.

It also marked an ongoing period of coming to genuinely accept and understand the many forms of neurological divergence that affect me, my parents, my children and their father.

Over the last decade, I’ve contributed to the end of generational cycles of codependency and abuse.

I’ve found a long-term learning environment where my divergent 12-year-old has finally discovered self-acceptance and learned to read.

And, I’m seeking an equally rewarding environment for my autistic 10-year-old.

I’ve fully accepted that I will never work a “normal” job due to the string of sensory breakdowns these bring, so I’ve found a way to build a lasting freelance career.

At 38, my neurological divergence is most apparent in my approach to cancer and death.

Staring in the face of an illness that may kill me, I’m not about to release the lifelong goals that I’ve almost achieved.

Likewise, I’m not going to spend my valuable time engaging my ex-husband in another legal pursuit, or soliciting assistance from family members whose help historically comes with strings attached.

When it comes to certain treatments, I’m willing to accept the possible hazards that come with their potential for healing. Yet, when it comes to others, I’m not willing to ignore my intuition and risk the quality of the present for the quantity of the future.

Instead, I’m far more interested in using the present to build the financial, educational and psycho-emotional foundation that my children will need to thrive as adults, whether or not I’m alive to see this happen.

As with all my life choices, I don’t advise other cancer patients to do as I do, but rather to follow their own intuition regarding what’s right for them— whether that’s dutifully following the advice of their doctors, exploring alternative healing modalities or striking an integrative balance that honors both medical authority and individual agency.

Finally, as someone who has nearly died many times already, I don’t equate curing cancer with forestalling death.

I recognize that death can come at any time from many places. For me, in particular — it could be cancer. Or it could be a second round of liver failure. Or it could be my persistent periodontal infection spreading through my system. Or it could be another fire. Or it could be my own hand.

Accidents, cardiac failure, stroke, infectious disease, and murder are also possible for anyone, of course. I’ve known and loved people who have experienced all of these at every age and stage of life.

As a result, I don’t seek to avoid death, but rather to have a good death when it comes.

I’m settling into a collaborative relationship within Georgia’s Cancer Center for Excellence at Grady Hospital now. However, I also have alternative options ready on the periphery should I ever need them.

Access to these will cost more money and take more time, but I trust the necessary resources will be present when I need them, if I do.

In her recent essay “If It Was Easy, Your Friends Would (Successfully) Be Doing It Too,” Shannon Ashley writes:

Frankly, I don’t understand the masses. I’m autistic. I’m better in writing, and I’m much better with similarly weird and awkward people.

I have no interest in trying to change that reality. After all, trying to please other people all of the time (who I don’t really understand) would only impede my entire creative process.

This world is hard enough without trying to swim upstream against my own nature. If I worry too much about other people and what they think about me, I don’t think I’ll ever really be me.

Me too.

The most important part of having a good death is truly being oneself in life.

If you relate to that notion, then I urge you to think of what I’ve shared — when you go to vote, when you go to the doctor, when you give your friends and associates unsolicited advice.

Let my essay be a plea for more inclusive, dynamic, open-minded policies and everyday attitudes that genuinely reject the idea of “one size fits all” and allow neurologically divergent people like me to work, learn, parent, heal, live and eventually die, in whatever way brings us the most joy, strength, grace and peace.

Want to support my journey? Reserving your copy of Queen of Wands is a great way to start! Thank you.