chronic illness

Whine Club Reading: On Hope (Video Content)

Last evening, I was so excited to be a Featured Reader at Whine Club: A Monthly Storytelling Series for Women, Femmes, & Gender Non Conforming People alongside other brilliant & powerful readers: Lakshmi Ramgopal (you can sign up for her newsletter), Bria Royal (check out the pocket healing zines on the site), & Katie Burke.

JTP Reading

Photo Credit: Keisa, @WhineClubChi

My good friend, Jené, is amazing and crafty and managed to get a good bit of the reading on video (without me even seeing her recording – which was quite good for my nerves lol)! So, now I can share it with you all. The full transcript of content is available below. Follow @WhineClubChi to stay updated on their programming! **Special thanks to all who came out & sat in the chairs & stood in the aisles, to Whine Club & Uncharted Books, & to Ramona – the bookstore pup ❤

Intro:

“I’m a bit of a pragmatist so when I was invited to read, I immediately picked out the two pieces I would do. And then, Keisa sent the theme… It was hope, so I was like, ‘(Expletive) I don’t even know if I’m GOOD at that!’ (laughs) So, I want to offer this piece for those of us who find hope to be ephemeral. Those who hold their hands out and stretch to touch it – finding it like holding snow in their palm – lasting for a moment of precious wonder but all too short lived.

Hope is a complicated thing.

I. Every other week, I show up to my therapist’s office (we’ll call her Khadijah)…

 

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Full transcript:

Hope is a complicated thing.

Every other week, I show up to my therapist’s office (we’ll call her Khadijah). I take a break from work and get on the train, head up to the 16th floor, guzzle her filtered water from recyclable paper cups, and try to talk about my feelings without theorizing them.

“Let’s try to take a deep breath in… aaaand out”, she says. “That’s good work for the day. I want us (by us… she means me), to get to a point where we’re embracing ambiguity & hoping in life a little bit more”.

She puts two books into my hands: bell hooks’ All About Love on top. And right underneath it was Pema Chodron’s The Places That Scare You: A Guide to Fearlessness in Difficult Times. She ain’t slick.

When I leave her office, I sigh in the key of East Coast born Black girl, wondering why the fuck she wants me to trust in life… to continue this activity of hope… doesn’t she know mass incarceration is real? Doesn’t she know the Orange Cheeto was elected? And I’m pretty sure I’ll have to be way more fastidious about cyber security now that *ding ding!

And the elevator open, goes down, deposits me back onto the first floor. Past the coffee shop. Out into the streets.

My therapist is convinced that I’m not bad at hope. I’m sure she’s right. I just have a hard time living into the Hallmark card, bootstrap theology version of what we’ve normalized hope to BE. My friend Ashon says that consistently showing up to therapy is a type of hope too. I’ll take that for now.

II. I went to church with my family every Sunday as a child. It was a nondenominational and charismatic church. I still remember the routine. Wake up. 8 am Sunday school. Praise and worship (for those who aren’t familiar with charismatic church spaces just know that during this section, we had to wait for everyone to catch the Spirit, shout, fall out, & get back up before it was all through) Then, there was the sermon. The altar call. (Where people might decide to pick up a shout again). After church conversations. Brunch – that was really around dinner time. Readying for school in the morning. Sleep. Nowadays, I recognize that it was the equivalent of a full work day. It took me a full 5 years post “adulthood” to sleep in on Sundays without it feeling like a crisis.

“Now faith is the substance of things HOPED for…”

I grew up feeling like hope was something I needed to ask for. Pray for. Wait for. Hope was expected to look a certain way. So, I got familiar with its mask. I smiled when I didn’t want to. I offered myself quick platitudes and Scripture when the emotional reality was too much. I was real inspirational those days.

On Sundays, I made my supplications at the altar and imagined warm light falling on me. Older women placed their thin, cool hands on my head and wrapped my body in white sheets. They put their hands on my belly and asked for spiritual fire to consume all doubts. I thought it could help me to be reborn.

At night, worry descended upon me again as I pulled the comforter up. I recounted the pending catastrophes – what might happen at school the next day, at church the next week, when I arrived home, when I got on the bus. I’m a Taurus, Aries-rising, long time maker of mental lists and plans. Yet, despite my lists, scribbled in bright neon post its around the bed, the anxieties followed me into dreams.

My Grandmother said I had a “sensitive disposition”. My father said I had “bad nerves”. My psychiatrist said, “She has general anxiety disorder”. So, hope is a complicated thing.
III. Reading tarot grounds me in so many ways. I’ve got a few favorites in the cards: The Queen of Cups, the Hermit, the High Priestess, the Nine of Pentacles. The Tower tends to make my hands shake. The Knight of Wands reminds me of the charm & the quick temper of my father.

I’m still working out my relationship with the Star. You could say she’s got the iconography of hope.

I invite her out for coffee in my mind on the rare occasion that the Star chooses to visit me. In the tarot, the Star comes after the Tower has fallen down – after all that they’ve known has fallen in fire & light. And here they kneel, drawing up water in the dim glow of the stars. They are naked.

“Don’t overthink this, Jade”, she tells me. As I hold the card between my fingers she reminds me, “Let’s start our work by drinking more water. Hope means relaxing into that which we do not know yet. And that’s going to take some hydration. Allow your body more time to be naked – this body, this chronically pained body, this sometimes-walks-with-a-cane body, this Black body – allow it space. The rest will come soon enough”.
IV. Hope is a kind of suspension. Sometimes, when I look at my lovers face, it morphs into the consummation of my vulnerabilities and fears. Anxiety makes it easy to spin their locs into all of the reasons that the moment is fleeting: brevity of life, emotional stress, the inevitability of death…you know, the light stuff. But sometimes, when I have enough rest & food & medicine & ancestor help… I can push pause on that tape. I can find enough space to choose another path and hold onto it for as long as I’m able to – until it is replicated again in this life or the next. Counting their locs, one by one, for the reasons I’m so grateful. I’m practicing. Hope.

Hope is easiest to do when I’m showing up for my written work, editing what doesn’t work, trying to create new language, & reclaim other language. Using a Black queer radical imagination to see new ways forward. It’s sitting my ass down, writing shit that doesn’t only – SOLELY – respond to Whiteness or ableism or homo-antagonism – stuck in a feedback loop: inciting incident, think piece, praises or hate filled comments, “Say both your words AND mine-for-me. Give me digestible works that I can quickly share with my (racist, ableist, homo-antagonistic) facebook friends so they don’t have to do their own work”.

V. This year, I’ve taken up the spiritual practice of allowing myself some room to dream and to tell my stories. I want to tell you that I come from a long line of Black American storytellers. You probably don’t know them… but my aunts, uncles, my father can roll their trip to the grocery store into 45 minutes of entertainment with a life lesson at the end. For example…

“My family was fighting at the 2008-2009ish reunion. I don’t remember why. I do remember that my cousin processed this issue by telling a story about friends who enjoyed waffles, and friends who enjoyed pancakes, and how they needed to realize that both of those breakfast dishes benefit from syrup. Therefore, it’s wise to share your syrup if both parties want to stay away from dry ass breakfast dishes. It’s also wise to choose your fights when it comes to family, if you can help it.

I would tell ya’ll the stories – in my own dialect– about how I’m always doing the most. This is not self-deprecation. I’ve taken a poll and most of my friends… and coworkers… agree. Doing the most… is what I do. You want a report? You’re getting report, graphics, and likely a sequined outfit when I present the report to you. I could literally have a series of “Doing the Most” Chronicles. I would always have something to write about and we would both be cackling” (snippet from: Because I’m Not Solely Writing About DT for the Next 4 Years).

A full blown cackle – might that be categorized as hope too? I’ll have to take that for now.

VI. On some Saturday nights, I bring my body to the dance hall and twerk like my life depends on it. My feet, cramping & swelling with chronic plantar fasciitis, hold me up for as long as I need them to – even if it’s just for a few songs. Ass up & down, defying the laws of physics, that’s a part of the way I hope too. And that’s gonna have to be good enough for now. Because that’s what I got. Showing up. Writing. Laughing. Dancing. Staring at my lover’s face. Drinking more water. Being naked. And understanding that while hope fuels the collective work of artivists & activists, it is also an individual practice.

VII. My therapists usually asks, “What are you up to nowadays?” I told her, “Writing about hope, isn’t it ironic?!” She wanted me to bring this piece in so we can discuss it. I will not. It’s for us. It’s for those of us, that are here, that find hope BOTH within & outside of reach – yet need it to exist in this world. If I remember to go to therapy next week, I’ll take out a piece of paper, and roll it out on her desk. It will read: I’m practicing it now… the shit is still complicated”.

Photo Credit: Ally Almore

Dating with Chronic Illness(es) Pt. II: “Let’s Talk About Spoons, Baby”

It has been so wonderful talking with you all about dating with chronic illnesses. I send my deepest appreciation for the ways you have exhibited community, solidarity, and reflection!

In my last post, I promised a follow up and I was able to chat with Jene again and a few other good friends about this topic. Please read this information responsibly, knowing that this post does not speak for an entire community. Let’s get into it!

“Being well can get expensive” – Jene A. Colvin (JAC)

There can be significant costs associated with the treatment of chronic illnesses. Visiting Dr.’s and specialists costs money. Getting tests done requires money. Insurance deductibles… money. Medicine… money. Vitamins and supplements… money. Appointments for therapy… money. ER visits… money.

Chronic Illness Cat 2

Photo Credit: Chronic Illness Cat

You’re probably sensing a theme.

“Budgeting for your illness when you share finances or just respecting your partner’s health budget is important when dating with a chronic illness. We might not be able to go out on the town… because I just got my doctor bill” (JAC)

So, it’s important to ask good questions about what a date might entail. Discussing the financial and physical commitments to the time clears up expectations.

Re-imagining Dates and Netflix & Chill

One of the most swoon-worthy moments I’ve experienced is when a partner looked deeply into my eyes and said, “Is today a Netflix & chill kind of day?” Originally, we’d planned to go sightseeing downtown. My body had other plans.

I tried to ignore it for the better part of the morning. I wanted to follow through with these plans. I knew they were genuinely interested in the sights we planned to see.

There are days that I can lovingly encourage my body to come along with me. I give it tea and medicine. I give it warm baths and light stretching. I give it orthotics, a meditation practice, and bland foods for digestive upset, as needed. Yet, there are some days where none of this will work. I needed a way to spend time with my partner, while being attentive to my body’s limits. So, Netflix & chill it was.

My good friend Athena (1) talked to me about her experience with this, and I paraphrase it here with her permission:

I’ve had dates set and then would suddenly have to change them (due to illness). I got the feeling that I seemed like a flake, because I didn’t feel comfortable disclosing my illness. Many people would lose interest because it would take me so long to get back to “normal”. It can even make friendships hard, because I have to make plans with a contingency. “If I get a nap before… maybe I can go out” or “Let me rest a day before and we’ll see”. Or I just become an entire recluse – sick and shut in list.com. Scheduling almost makes me itch because I’m so organized. I like things to work. I get really frustrated with myself because people expect me to be the one who has to change

Dating (or even maintaining friendships) with chronic illness(es) means being flexible. In my own experience, most of my physical energy goes to my professional life and supporting myself in that area. After that, I’m looking at my wellness goals. Somewhere in between (not before or after), I’m thinking of ways to consistently show up for those relationships and partnerships that are important to me.

In my life, I’ve seen that it can be done. But sometimes, well planned dates require a change of plans. Sometimes, my body needs my throw blanket, hot tea, Netflix, and legit… chill. It’s important to remember that honoring the limitations of others is a hallmark of romance. #bodyroll #ifmybackisuptoit 😉

Paperwork, Pills, & Emergency Processes

I don’t particularly love talking about this part (sigh) but it is important to ensure that there are emergency and contingency plans. In the case of an emergency, you’ll want to know if your partner equipped with information about medical needs, allergies to medicine, signs of an illness flare-up, emergency contact information (if it’s not them) etc. to come through in the clutch. Let me be clear, whatever you disclose or expound on with your partner is. YOUR. business. I know how sensitive these things can be. I simply want to call into the e-space that a plan for paperwork, pills, and emergency processes is helpful and oftentimes, essential. Because “shit gets real when everyone else is asleep and ya’ll are at the ER” (JAC).

Doing Your Research, Suspending Assumptions, & Curating Language

Yesterday, Jene talked about using a light / color system to communicate about chronic illness. I resonate deeply with some of language around the Spoon Theory, originally created by Christine Miserando (read it here) (2). It’s not perfect, so I pair this with Johanna Hedva’s Sick Woman Theory. In my life, it’s important for baes and potential baes to have this kind language – to know that through my daily activity, I’m negotiating energy through the lens of whatever physical limitations I have aka “spoons”.
Yes… last week, I was twirling with you to vintage Prince cuts.
Yes… the other day, I waited with you in line to get to that new brunch spot.
But it helps if you know that I’m negotiating with my body to do these things. I’m enjoying myself but I might also be looking for a seated area. I’ve bought along an assistive walking device. I have my orthotics on inside of my get-em-gurl shoes. I’m stopping to stretch and to rest. I’ve saved my “spoons” – I’ve cut out another activity so that I could be present in this activity. I parked close to the venue, because I may not be able to walk back without significant pain. Or I could have to cut out an activity (or multiple activities) to recoup from being present in this activity. Again, I’m negotiating “spoons”.

So when I say, “I have about 4 spoons left”, I need bae to have done the research & have a reference point for that. ‘Cause bae can’t be out here saying, “But, if you did [fill in the blank] yesterday, why can’t you do it today?!” (Answer: I had a different amount of spoons).

Ending Notes & Points of Dialogue:
1) Athena is the pseudonym I chose for my friend. She said “Make it a spicy one so I can chuckle”. I told her I didn’t know if I could do spicy, but I figured the name of a goddess might suffice.

2) For those who are unfamiliar with this language, please do take the time to read Christine Miserando’s Spoon Theory. It does not reflect an intersectional approach to chronic illness (imagine I said that twice, for emphasis). So, read through it, take what works, and leave the rest.

For a more intersectional approach, I suggest following Spoon Theory up with Johanna Hedva’s Sick Woman Theory. There are a great deal of resources (limiting it to two here for word count) and if you find any that you want to share with me, as well, leave them in the comments below.

What language do you use to talk about chronic illness with bae or potential bae? Do you use a light / color system? Spoons? Something else? Feel free to let me know in the comments and / or through the contact form! I’ve enjoyed hearing from you all.

Perhaps, we can also talk about baes & holidays (because – whew!), sex & sexuality, and more. If you want to get in touch with me about these things, contact me here!

Image Credit: Createherstock.com

Dating with Chronic Illness(es): Healing Conversations with Sister-Friends

The constant, chronic pain hummed at a 3 in the electric wiring of my body. Through each city block, my body spoke to me, “Okay, slow down”. First, an uncomfortable warmth in my feet, hips, and lower back. Then, a distinguishable ache. Finally, sharp pain. We got to the bakery just in time for me to sit and re-group.

Our double date was wonderful in every respect – good food, great friends, in a city that we love. Yet, when we sat down with our pastries and coffee, our conversation pivoted quite a bit from those things.

“Yo, I’m not sure many people understand what it’s like to date with a chronic illness that isn’t visible”

This conversation was called into the space by my sister-friend, Jené  Colvin (whose awesomeness really does surpass words). It was the conversation that engaged us until the bakery closed for the night. It was a time to vent, to acknowledge this reality, and on some soul-level, to continue healing. Our partners sat in (mostly) quiet reflection, open body language, and a few knowing nods along the way.

This was the start of a brainstorming process for the things we’ve learned about dating with chronic illness(es) along the way. We want to share those things with you.

It’s important for you to know that we present our knowledge and lived experience to you with both anticipation and trepidation. For me, it is the continuation of a project I started (got scared of, and then stopped) a year ago. Typically, we both tend to be extremely reserved about the life cycle of our romantic relationships. Yet, through our conversation, we’ve realized that this is the moment to open up about this.

As a note, for the sake of “not all our business needs to be out on these Internet streets”, I will not directly name the chronic illnesses involved – unless it serves a key point. Jené’s comments will be marked with JAC, and my comments will be indicated by JTP. It is my great hope that this information is helpful for you as you reflect, adjust, engage, (and – lowkey / highkey – dismantle ableism).

Disclosing Chronic Illnesses

JTP: I’ve had some very interesting first date scenarios when it comes to disclosing an illness. Let me say from the gate, I still haven’t found a rigid, catch-all rubric for disclosing a chronic illness in a romantic setting. For example, the first time I met up with V in person, I knew that I would have to disclose some potentially uncomfortable things. I honestly didn’t know how that would sound:

“Yes, I’d love to go out to eat with you! But because of a chronic illness that impacts my digestive system, we just might end up going home a little earlier than anticipated if my body decides it just isn’t having it”.

“A walk around the park sounds lovely! Also, I’ve got chronic plantar fasciitis in both feet and this impacts my overall gait. So, if I stop in the middle of a ‘moment’ to stretch, then that’s why…”

“I promise I’m so excited to be with you right now! Yes… that’s exactly why I’m breaking out all over. My body has an interesting way of processing adrenaline…”

Sometimes, my body decides to be incredibly kind and sweet. Other times? Well…

chronic-illness-cat

Photo credit: Chronic Illness Cat, Facebook page

With V, I ended up disclosing very early on in the process because of the circumstances. In other situations, I waited a bit longer. There have been times I’ve disclosed and ‘potential bae’s’ have looked at me in shock, surprise, and even… fear. (Needless to say, they didn’t last very long). There have also been times I’ve disclosed, expecting fear, and have been met with deep understanding.

It takes a lot to disclose because of the stigmas we have around health. In a society that hinges itself on capitalism and production, saying, “I have chronic illness(es)” can be seen as a detriment. Oftentimes, people go immediately to, “Have you tried (insert random healthy thing here)” – going to the remedy. Understand that chronic illness means… chronic. That’s not to say that there is no possibility of wellness or even complete healing. It just means that most chronic illnesses happen and will happen across a long period of time, or even a lifetime. (And yes, I do have to say this because too many people ask, “Are you better yet”?)

I don’t have a ‘thesis of disclosing’, and I’m not sure that a neatly-written script is possible in every case. What I’m here to share is that since we are all temporarily able-bodied (read up on Johanna Hedva’s Sick Woman Theory and get clear on that), disclosure is a very real part of life. So, it should be met with honor, care, concern, and confidentiality (when we share something with you… we’ve shared something with you).

Going Out!

JTP: In my experience, going on on dates has been great, as long as we think creatively and carefully about everyone’s access / accommodation needs. (Which, honestly, is just good general practice. You should be doing this even in friend outings. I try not to use a lot of ‘shoulds’ in my writing, but really… it’s 2016… like… think about people’s accessibility needs).

It’s important for both of us to be mindful: is there seating around a particular venue? How long is the walk to the venue? Should I bring an assistive walking device? If someone approaches me about my handicap placard because I don’t “look sick” (yes… it happens… a lot), who will deflect the individual that day so that our date isn’t spoiled? Whose got the medicine? What does the menu look like (for dietary needs)? In the event of an illness flare up, what is our emergency plan?

Perhaps this doesn’t sound sexy. But knowing that someone cares about your safe and enjoyable access is body-roll-worthy-do-you-hear-me?!!! It’s important to extend this framework to anyone that you’re planning to go out with (in any capacity). Practicing equitable relationships and bae-ships includes being mindful of accessibility and accommodations.

Communication Ain’t a Game

JAC: You might have to come up with your own language for what is going on so that communication is easy on bad days. It’s been really helpful for my partner and I to use an alert system for anxiety. For example, “We’re having a red / orange / yellow day” (as opposed to a ‘green day’).

It’s important to share that and to share what helps / what hinders in communication. As an example, being told “It’s okay” can be the worst thing to hear at times. It’s nice to know that your partner isn’t mad at you, doesn’t blame you, still loves you, and understands the situation. But “It’s ok” really may not be the best way to communicate that. Sometimes, “It’s okay” is like nails on the chalkboard.

It might be okay for you that we can’t have sex because fibroids are making me feel like my body isn’t mine this week – which peaks my anxiety – which makes sex too hard to engage in. You might not be mad at me for that. Yet, I might be furious and frustrated that I can’t be intimate in that way, at that time. I’m not okay. So, I don’t want you to tell me it’s okay.

In regards to overall communication, you should be able to talk to your partner about chronic illness. But you won’t always be able to talk to your partner about your illness
you just won’t. Sometimes, they won’t get it. Sometimes, it’ll frustrate you. So, you’ve got to have some other folks to lean on. You also don’t have to expend extra energy making someone else feel okay about not being able to fully understand.

JTP: Right, and that’s why I appreciate the community I’ve found with other people who suffer from chronic illnesses. I’ve found a lot of this community online, in the humor of Chronic Illness Cat. There are some things that my partner doesn’t understand, but it doesn’t mean they don’t care about it.

I’ve found that asking, “Can I help” and then, “How can I help” gets us to solutions fairly quickly. There are times that my body is just going to do whatever it wants to do. So, “Can I help” is just a good starting point. From there, we can decide what needs to be done. Sometimes, it’s as easy as, “Please put your hand on my back so that I can have a bit more support”, or “Please pass me the Motrin from my bag”. It sounds over-simplified when written but in times where my body is being very… demonstrative… it’s an efficient practice.

Maintaining Balance and Respecting Boundaries

JAC: It’s important to figure out what still makes you feel like partners. There will be times where they are caring for you because you just can’t. It’s already hard feeling like a grown ass person when your illnesses tell you, “You can’t”. But your relationship shouldn’t make you feel like their child, the burden, or diminish your dignity.

There has to be mutuality in the relationship.

JTP: Right, and these can be practical things. Often, standing for long periods of time can take a toll on my body. This means that household chores such as doing the dishes can be a bit taxing. Mutuality means that I’m being honest about those things and contributing in the areas that I can, when I can. Mutuality also means that the limitations of my body are being respected and that I’m respecting the limitations of my partner’s body.

JAC: Healthy boundaries also include getting acquainted with the ways we apologize for our illnesses without saying the word, Sorry. Sometimes, we can apologize without using words (by overextending ourselves). When we don’t take care of ourselves, shit can get out of hand very quickly! Arguments and fights are often at the end of that barrel and often, you don’t even know how you got there. So, try to gauge the things that you do with / in / through your body as a way of trying to ‘apologize’ for an illness.

On Intimacy #Bodyroll

JAC: Sex requires SO much communication and your needs will CHANGE. This is true of sexual interaction in any relationship, but it’s also real when you have to juggle your desires with what your body is actually capable of.

JTP: That definitely requires some concentrated unpacking. So, perhaps a Pt. II blog post would be best. I think it’s good to rest here and pick it up again later. At this point, I’ll also open this up for my other spoonies, friends, and family who live with chronic illnesses. If you’re interested in unpacking what dating, intimacy, life, etc. with chronic illness is like, please do contact me here! I would be honored to hear your stories!

Click here to read pt. II.

 

 

 

 

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

On Chronic Illness, Thriving, & Taking Breaks

Many of my consistent readers will notice that it’s been almost a full month since I’ve done a full post on this site. But I’m back so heeey ya’ll! 🙂

Now, my hiatus doesn’t mean I wasn’t up to anything – in fact, I was over at the Mudroom & YoungBlackFeminist.com telling my entire business and writing / talking about authenticity, womanhood, self care, academic success, and more. However, I was also in the process of slowing down due to something I have only briefly named on a public forum…

This month has been a month of intentional rest and healing for my body. During this time, I’ve gotten REALLY acquainted with both the hilarity and reality of Chronic Illness Cat and have also been highly reflective on chronic illness, thriving, and the importance of taking breaks.

As you know, the overall mission here is to “offer information, ideas, & counter-cultural narratives that will empower readers to thrive and to lovingly & creatively challenge secular and sacred systems toward greater levels of inclusion…”. And that hasn’t changed. In the past few months, I’ve written about style & style politics, current events & media representation, mental health, and more. But I realized that I can’t fully embody that mission if I don’t touch a bit more on the subject of Chronic Illness, in a broader sense, as it is directly tied to issues of a) thriving and b) inclusion.

Living with chronic illness/es can be intense, especially when it’s something people feel compelled to hide away or pray away. In my experience of living with chronic illness (which will not be named ’cause I do have SOME business I can’t splash on the interwebs ;), I have found that the pressure to hide comes from within AND without – as people admonish you not to share any health struggle at ALL, in order to avoid stigmas. Yet I have also found that when we hide, we sweep the responsibility away from folk to actually practice empathy.

From the genius that is Chronic Illness Cat *Full link below

We sweep away the expectation that inclusion an empathy IS a very real possibility in human interactions, in work places, in sacred spaces, etc. We deprive ourselves of acknowledging and affirming that battling chronic illness (of any kind and to any degree) while fulfilling any other responsibilities you have takes some true kicka**ness. Also, in my personal experience, hiding has showed up in overworking and stretching myself beyond reasonable lengths.

So, for the past eight years I’ve navigated the very tricky space of what to share & what not to share. Because my chronic illness is invisible, I’ve had to craft appropriate responses for when people say things like, “But you LOOK so healthy… but you are so YOUNG… but you DO so many things”.

From the genius that is Chronic Illness Cat *Full link below

Yet, I also acknowledge that because of the invisibility of it, there exists a “passing” privilege (meaning: undue benefits, rewards, and / or centering of experiences due to the fact that at any time, though I have a chronic illness, the invisibility allows a choice to “pass” and benefit from a construct of perceived ableism. This gets sticky especially because ableism is the very construct that assumes that every disability is visible). So, with that said, this month has been dedicated to two things. The first has been using opportunities within my personal life to speak to / about chronic illness using creative means, as I find that it challenges stigmas and creates deeper understanding.

For example, my partner and I ran a quick series of posts that talked about Dating w/ a Chronic Illness & other experiences. A few favorites from that include a quick rant:

… If I have to explain one more time that chronic illness doesn’t NECESSARILY mean that a) it will go away, or that b) you haven’t seen various doctors, specialists, gurus, reiki masters, acupuncturists, yogis, meditation specialists, masseurs, and your Gramma’s deliverance & healing service… I SWEAR TO BOB!

And the dating checklist:

Dating w/ a Chronic Illness, Pt 8: The Date Decision Checklist

a) Is there seating at or around this venue?
b) How much walking / standing is required? Are there wheelchairs to rent? Should I rent one if people are gonna act weird about it?
c) Will u push me if I rent the wheelchair?
d) Is it weird to bring my own lawn chair? Is there space to do that?
e) Would you be willing to carry the lawn chair, if needed?
f) Do you have the medicine or did I put the medicine in my bag already?
g) Should I take my medicine before we go or when we get there?
h) What does parking look like? How far is parking from the venue?
i) Is there a menu? Are there any dairy free options?
j) Is there immediate access to a restroom in case of accidental ingestion of a triggering food?
‪#‎Nosurprisedatevenuesplease‬!

This may sound like an incredibly complex checklist of things, but what’s underlying this relatively funny list are concerns about ACCESS – spaces where my body & being is welcomed, and spaces where I will have to make physical sacrifices to be a part of. Also, chronic illness does not function or exist in a different world,  from my other sociological identities. It is a very distinct thing to be a woman of color with chronic illness and / or disability. Navigating the ways that these identities intertwine with each other requires us to remember that when we challenge stigmas, we are rarely challenging just one. For example, in Carolyn Tyjewski’s brilliant essay on advocacy, disability, and intersectionality she writes:

Yes, the “Strong Black Woman” is a dangerous and limited trope. However, it is also used within the Black community to revere Black women, problematically or not. And if one looks at the historical figures that are most often called forth as the quintessential “Strong Black Woman,” most are Disabled Black Women.

Harriet Tubman had severe epilepsy. Sojourner Truth had a disfigured arm and hand. Audre Lorde was not only legally blind and a cancer survivor, she was a lesbian. And being a lesbian during her lifetime was unfortunately seen as a medically diagnosed psychological disability. I highlight the latter not because I agree with it. Disability is a social construct that shifts and changes over time, space and place. And one’s disability quite often disappears when one is a significant figure within history.  So, while I dislike reminding people of a recent medically created nightmare (re: Sandra Bland’s treatment), I wish to draw attention to the complicated nuances of and between Disabled people and the reading/naming of disabilities.

This is an appropriate reminder that when we talk about these things it behooves us to take a nuanced and sophisticated approach.

The second thing this month entailed for me was claiming the right to rest, heal, thrive, and to take care of myself in those areas where I needed to. This really wasn’t anything that I set out to do intentionally. Yet between working full time, blogging, and contributing, there is a great deal required from my body and from my mind. So, this month was a time to simply focus on the full time gig as we ramp up for a new season, and to let my blogging muscles take a short break before refocusing on new content. My ability to thrive depended on this. So, with that said, I’m happy to continue the dialogue and work that happens in this space and encourage you to check out the following works, in the mean-time:

To see what I’ve been up to during the break, check out my interview in the Meet a Young Black Feminist series.

All memes above are from Chronic Illness Cat, Featured image is by Createherstock.com.

The Tightness in My Chest – Reflections on #NoShameDay

Her office always seemed too still, but I liked driving up the mountain, so I kept going. It was the second year of my M.Ed program, and I was having a very hard time sleeping. In reality, I’d been having trouble sleeping for about two years prior.  But I only paid attention when I began to have headaches, digestive troubles, and other physical symptoms. Mostly, I thought it was just because of my circumstances at the time.

“I’m…uhm… having a hard time sleeping, but it’s most likely because of my recent breakup”
“I’m not sure it’s just the breakup…”

I always wore brightly colored lipstick when I went to her office and made sure to go right after work, in business casual dress. [Lest she think I didn’t have my ish together]. I always came prepared with a planner, a notebook, and a few pens (in case one ran out).

“And when you wake up each morning, how anxious have you been feeling, on a scale from 1 to 10”
“About a 4… or a 5”
“The moment that you wake up?”
“Yes”.

Yesterday, Bassey Ikpi (@Basseyworld) & The Siwe project moderated a conversation via the hashtag ‪#‎NoShameDay‬ to “help reduce the stigma surrounding mental health illness”. When I began to read the posts, I was immediately prompted to reflect on my own journey with mental health and wellness. For quite some time, I’ve encouraged others to let go of the stigma of mental health illness, all while remaining relatively quiet about my own journey. That ended yesterday, as I made the conscious choice to participate in #NoShameDay.

Before then, I’d been quite afraid of something I didn’t have words for… until I stumbled upon this definition from the National Alliance on Mental Illness, Santa Clara County:

Participating in #NoShameDay meant being vulnerable in a way that I hadn’t been before… with both the risk of double stigma AND the healing experience of speaking my truth & sharing my story.

Participating in #NoShameDay caused me to remember those early days of trying to figure out what was going on with my mood by talking with spiritual directors & leaders. Their simple admonishments to  “Have more faith…” almost always sent me into further panic. How could I have more faith than I already had? Was I missing something? Why was my level of faith insufficient… and HOW, exactly, where they even measuring this?!

After experiencing that scenario more times than I could count, I knew I needed to take a different route.
“Experiencing anxiety at level 5, first thing in the morning, is pretty intense. How long has this been going on?”
“Honestly Dr. S* I think an easier question might be, How long hasn’t it been going on?”
The trouble was that consistently ruminating over what might go wrong made me pretty effective. I was five steps ahead because this old brain of mine had already gone through the 15 scenarios that might happen when… if… and where…
I was achieving great things. And I was also losing sleep, having nightmares, tension headaches, digestive upsets, dizzy spells, and shortness of breath. I legitimately did NOT want to entertain that this was anything more than just a passing phase. So, once the counselor began talking in terms of general anxiety disorder, I stopped taking the drive up the mountain.
A year later, the shortness of breath & tightness in my chest seemed like it was not going away. I’d gone from about a level 5 (upon waking) to a level 8, and I was always fatigued. I went to a family doctor. The first sign of why I’d been feeling so fatigued was a deficiency in iron. However, as time went on, the family doctor began asking deeper questions – questions that would get to the root of those physical symptoms. Eventually, we circled back around to anxiety: the anxiety attached to maintaining my composure in an intensely microaggressive situation.

“So how do you want to do this?”

It took me a long time to answer that question. It was loaded. It would mean that there was something there that I needed to address: double stigma or not. I let out a deep breath and it seemed Dr. W* sensed my apprehension.

“Okay, so how about we keep it simple. Try very simple things first, and then we’ll reassess later: drink water, spend time with people who love you, get enough rest, actually take your vacation time, and take this pamphlet on deep breathing”.
It was honestly the best advice that I’d received at that time. That year, I told my friends and family:
“But you don’t seem nervous or sad at all!”
“Nervousness is not necessarily the same thing… Anxiety, is hard to explain. It’s the feeling that something unfortunate is coming. It’s working out the answers to the problems you don’t know you have yet… and may not ever have. It’s checks and balances – it’s tension”.
I didn’t really understand why that was so hard for me to come to grips with it [AND for people close to me to even consider it was a real experience] until I read on a piece on ForHarriet.com about Black Women, Mental Health… & the Superwoman Myth. In it, author Anna Gipson references Dr. Brenda Wade’s work along with the myths & misconception that Black women must be strong (at all times, in all circumstances). Yet it is this misconception that can prove to be such a hindrance to our self care process.
About a year ago, I started the practices of meditation and art therapy. I learned deep breathing techniques and I taught them to my partner, as well, so that I’d have a reminder in case I was having a less-than-ideal-day. I learned that following the musical movements of Bobby McFerrin’s VOCAbuLarieS gives an anxious & ruminating mind something constructive & beautiful to do. There are still hard days, and there’s no guarantees that it will ever subside. However, it has made me more mindful – of myself, of others, and of the present moment that I am inhabiting.

After a four year journey, I’m still unlearning the stigma. I’m learning to forgive myself for the things I didn’t know when the tightness in my chest began. I’m learning how to advocate for myself unapologetically. I’m learning that I don’t have to fix everything. I’m learning and affirming that anxiety is not who I am. I’m learning to take my vacation time. And I’m learning to drink more water. 🙂
*Image Credit: Deathtothestockphoto.com, Daily Inspiration Collection