encouragement

For Colored Gurls Who Consider Blogging & Glitter When Chronic Illness Gets Too Real, and Waiting Rooms Get Too Stuffy, and Folk Don’t Have No Act-Right

“Sick Woman Theory redefines existence in a body as something that is primarily and always vulnerable…”- Johanna Hedva, Sick Woman Theory

Trust me. I’ve spent some time being sick over the course of my life. The first few weeks of my new year were spent recovering from acute bronchitis (non-chronic), coupled with a really sexy flare-up of one of my old illnesses.

I believe in cosmic irony: I was raised by a medical health professional. This means that I am acutely aware of my body and how it works. This also means that I’m acutely aware of the medical health field in general, how absolutely frustrating it can be, the five million questions you have to ask in phases before diagnoses AND after diagnoses, and so on. I’ve spent a lot of time in Urgent Care centers, in (what my primary care giver calls) “Doc-In-A-Box” Pharmacy Wellness centers, university health centers, and ERs that smell of disinfectant & sound like buzzing fluorescent lights. I’m pretty clear on the fact that “existence in a body is vulnerable”for everyone. 

I’m well enough to go to a traditional workplace every day from 9 to 5 pm and fulfill my duties as assigned. I take a LOT of pride in my professional identity and the work that I do.

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Feeling like “Mama, I made it”! Receiving an award for some of the work I do.

I also have to acknowledge what sociologists call my “passing privilege”. In this case, I mean that my ailments are largely invisible and so, I would have to intentionally disclose. I want to acknowledge that early on so you can understand the sociocultural spaces I’m writing from.

Yet, there is a constant and persistent pressure to be silent about chronic illness and sickness. I argue that this pressure is especially salient for those who work in externally-facing fields which hinge themselves upon overall productivity & prestige (writers, bloggers, media reps, fields of business, academics, artists, etc.). So the relationship that must be negotiated is “How should / do I engage the concept of illness and chronic illness on my platform… (and what do I stand to lose by simply acknowledging sickness)? 

I’d been thinking about that for quite some time when I came across Johanna Hedva’s beautiful, game-changing, and brilliant piece called Sick Woman Theory (2016). She offers a construct which I believe is helpful for understanding WHY there is so much silence and misconception around sickness and chronic illness:

“Sickness” as we speak of it today is a capitalist construct, as is its perceived binary opposite, “wellness.” The “well” person is the person well enough to go to work. The “sick” person is the one who can’t. What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.

Care, in this configuration, is only required sometimes. When sickness is temporary, care is not normal.

In a capitalistic society that places mass and over-productivity at the forefront, people with chronic illnesses have to:
a) get creative about their work & how it is done
b) get creative about whether to / how to disclose their illness(es)
c) wade through constant misconceptions about their abilities to “produce”
d) deflect the sickness-sleuths who (for whatever reason) believe you take pleasure in mis-reporting where your body is & what it needs

Hedva’s (2016) piece came to me when I was collecting my own bravery in regards to chronic illness. It came at the end of a month-long trajectory of weighing the pros and cons of addressing this topic on my public platform. (It’s not like I write anonymously). What I realized was that all too often, silence quenches the space where we should and could call for deeper inclusion and understanding. The pressure to stay silent gave way to the belief that we can learn, grown, and benefit from shared stories. I believe that we can find some “act-right” (defined here as the ability and the desire to live into better actions & decisions) when we know the following things:

1) Illnesses (and their symptoms) exist on a spectrum:
There are some illnesses that require intense care and may lead to not being able to work. There are some illnesses that allow for work with accommodations. There are some illnesses that, with proper management, do not get in the way of what we perceive to be traditional work. While there are certain markers and similarities of type of illness, the ways it affects individuals are varied. So, let. people. live.

DO NOT SAY “You aren’t well enough to be (insert location here: at this concert, at work, outside, etc)”. Instead, develop a rapport so that you can genuinely ask, “How are you feeling today / in this moment”? Understand that in many cases, people with chronic illnesses and / or their caregivers understand both their abilities and their limitations, and will communicate them with you, as appropriate.

2) Wellness and care looks different for everyone.
Chronic illness is not just a physical process. There is meaning-making that needs to happen on an emotional level, on a cognitive level, and many times, on a spiritual level (here’s where you can get really existential about the meaning of life and why there is human suffering, but… I ain’t gone do it in this blog post). This means “care” is often multi-tiered. For me, “care” looks like doing paying work that both satisfies my spirit and offers benefits that pour back into my wellness. Care looks like getting enough rest, going to the Dr., and taking my medicine as prescribed. Care also looks like going to the nailery (that’s Philadelphian AAVE dialect for “nail salon”).

Judge. me. if. you. want… but my body needs to be dipped in glitter. Regularly. My body can experience pain as well as pleasure. I’m intentional about cultivating pleasure in this way. (Also, trust me, safely venting with my nail tech keeps folk from gettin’ cussed out when they say inappropriate things). Speaking of which…

3) If you’re not a doctor, it’s generally best not to comment about someone “looking or not looking handicapped / sick / ill” etc. or try to “diagnose” their symptoms based on a case you’ve seen before.
It’s 2016. We gotta do better. A few days ago, I went to dinner with a good friend and took the train. I got lost on the way and ended up walking quite a ways past my pain threshold. After dinner, I decided to take an Uber home so that I wouldn’t further damage or tear the fascia in my feet. When I asked my driver to pull up to the handicapped parking spot, here is how my Uber Driver responded:

Uber Driver: They let you do that?
Me: Excuse me??
UD: I mean, you’re not handicapped, are you? You don’t look it.
Me: I’m not sure what you mean. Do you see the placard? A doctor has to sign off for the placard. So…
UD: Oh!!! YOU POOR THING! What happened honey?
Me: *blink*

Although this was one of the milder interactions I’ve had surrounding an ailment, it was still inappropriate. (Here’s a point to take home: people can be both well-meaning and inappropriate). If you have a rapport with the individually, then sharing and asking well-placed questions may be okay. In the best scenarios, the individual will freely share about their ailments if they deem you safe and / or it necessary. But if not, just let. people. live.

If you’ve gotten this far into the post I don’t want to leave you without resources that facilitate “act-right”, further understanding, and clarity. Two absolute must reads on the topic of chronic illness(es) are Christina Miserandino’s Spoon Theory and Johanna Hedva’s recently published Sick Woman Theory. I also cannot overstate how much I value the community at Chronic Illness Cat. It’s a healthy blend of encouragement and humor. (No glitter… but that’s why I go to the nail salon). Because Lord knows, there’s got to be a little space for all of it.

  Image Credit: *Quick shout out to my nail tech (@luxurinails) who always keeps me in glitter!

Note: The title of this post is an adaptation of Ntozake Shonge’s choreopoem for colored girls who have considered suicide / when the rainbow is enuf

4 Things I’ve Learned from Cross-Country Moves

My career path has taken me from my home city of Philadelphia, to rural Central Pennsylvania, to a small town in South Carolina, to the bustling metropolis of Chicago, IL. I have lived in places where it’s taken me about 5 minutes to get to everything, and other places where I’ve navigated both underground, public transportation and winding highway routes. Each time I have moved, I’ve learned something about myself. Since recently moving to one of my absolute favorite cities for what I know will be a nice, long while, I’m prompted to reflect on some of the things I’ve learned due to those cross-country moves. If you’ve recently moved, or are considering moving, here are a few lessons to look forward to:

1. How Resourceful You Can Be
My worldly accumulation of goods, furniture, and artwork is slim. Most of the time, it costs more to move my belongings than what they are worth. So, this means I’ve started over many times, with each move.

I came to Chicago with a few bags of clothes and the files / credentials I needed for work, but not much more. Many of the belongings I did have (books, kitchenware, art, etc) were in Philadelphia, and wouldn’t be moved to me for quite some time. In addition, there was the matter of furniture (both buying and the moving). I realized that none of this would be done quickly and I was working with a limited budget. So, I literally networked my way into a comfortable home. Through joining groups and lists, I had access to others in my area who were selling their used furnishings or original artwork at discounted rates. I rented a U-haul and took it across the city, finding friendly faces and willing arms in my network to help me move heavy furniture wherever it needed to go (since I picked up furniture at separate times, hiring movers wasn’t the most financially responsible move).

I furnished my space and made it comfortably by being resourceful and by packing light. However, I had to keep that internal monologue in check – the one that says, “You should have accumulated more. You should be using movers. You should… you didn’t… you can’t… you should…”

It’s easy to think about all of the things you should be doing, or the things you haven’t done yet when you move to a new place. However, the things you have done will show you just how badass and resourceful you are. Leasing a new place, making it comfortable, finding a new doctor, going to events to make new friends, researching the best price for auto repairs in your new city, learning new transportation routes, all require a certain amount of confidence and badassery to do in a place that you don’t call “home”. If you can, take a few moments to celebrate that!

2. How to Accept Help
My moves across country have all had this in common: I knew about 0 – 2 people in that place prior to moving. SO, I had to rely on my close friends to introduce me to their networks. The people who they introduced me to became the ones who would help me get acclimated to my new environment. I found myself relying on colleagues, coworkers, and neighbors for assistance.

This was no easy feat for someone as Type A as I am. It is one thing to accept help in a professional sense; there are already structures in place that make it possible and fairly easy. However, accepting help in my personal affairs was an experience that really stretched me.

I remember one occasion that I picked up a bed and a table from a local family. I was going to arrange for a mover, but there were 2 people that I knew in the area who agreed to help out. However, when the day come, both had emergency situations to attend to! So, there I sat in a U-Haul, with a bed, and a table…trying to figure out how I was going to move the items from the ground floor to the second floor of my building. All the moving companies were closed for the evening and I needed to have the rental truck back in approximately 3 hours. As I began to despair, a neighbor walked up to the truck.

I’m a city woman… born and raised in Philly. So, someone “walking up to your truck” isn’t immediately interpreted in my mind as salvation or assistance (though when I lived in a small town in South Carolina, this was often the case because most people in town knew each other). I mustered all of my discernment to decide whether or not the situation was safe, and after a short exchange (that included taking down license plate numbers – Mama didn’t raise no fool!), they offered to help me move the items into the building. Though I only had them move the items into the second floor lobby (because… safety… and too many episodes of Scandal & Law & Order), I realized that there would be moments where success in my next task would have to mean accepting the help of others.

3. How to Navigate Various Cultural Contexts
In one of the institutions I served, student affairs work meant also having a rudimentary understanding how various hunting seasons impacted programmatic attendance and / or residence life policies. In another institution, I needed to understand how students from various neighborhoods understood their city & the university’s impact on the city. In another, the expectation of a well placed ma’am or sir was just another part of life (though my identity as a woman of color and lack of trust in traditional gender roles made the practice too dicey for me to consistently engage in). The work that we do and the life that we lead is always situated in a sociocultural context. Moving to different states, countries, geographical regions, etc. allows us some great time to get used to various cultural contexts. It allows us time to see how these contexts impact the way we live our lives. In just a few years, I learned to identify the veracity of a sound by someone describing it to me in comparison to “a bellowing cow in a hailstorm” as compared to the “whoosh of a city train” that I was used to.

4. How to Listen to Your Gut
You become strangely in tune with yourself as you move to a new place, if you sit through the initial discomfort of it. It’s not elusive or incomprehensible: moving provides you with new scenarios to respond to… and with space to figure out what your responses mean. Moving allows you a new perspective, different things to pay attention to. For example, I can discern the feel of a neighborhood I am in by looking at the streets & sidewalks, the stores / type of stores / lack thereof… I took these things for granted in my home city.  I think that the opportunities to pay attention to your new scenario and your internal processes, ultimately develops your intuition, your “gut sense”.

It’s not a magic sense, but one that has developed as I have developed as a person. It’s a sense that carries me through each move. It was the eery feeling I got in a rural shop that alerted me to the fact that I was being followed. It was also what reminded me on what to do for my immediate safety in that scenario. It is what helps me find cool, new places, or spark conversations with kindred spirits. Moving has a way of putting you in touch with yourself and your own intuition, with plenty of opportunities to practice using it.

I cannot say that each move has been a fantastic and dazzling display. There have been quite a few hardships along the way. But those hardships have schooled me and in some ways, transformed me, into a more courageous, sufficient, and open human being. The cross-country moves were the conduits for those lessons!

How about you?! Are you thinking about moving, or will you be embarking on a move sometime soon? What are you excited about? What are you anxious about? What are you hoping to learn? If you’ve recently moved, what would you add to this list?

Image Credit: Corners & Crannies London, https://app.deathtothestockphoto.com/

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4 Things I’ve Learned from Cross-Country Moves by Jade T. Perry is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.