On Being at Home… A Lot

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Since it became clear that social distancing would be necessary to slow down the spread of coronavirus and hopefully avoid overwhelming our medical system, there’s been a lot of advice circulating on how best to deal with this event. The advice tends to fall into two categories: optimistic “use this time to tackle that project you’ve been putting off” or anti-capitalist crossover self-care crowd saying “now is not the time for productivity, it’s time to rest”. This advice or validation is not wrong, depending on what you feel you need, but I do think as extremes on a spectrum of activity it tends to take the short view when this crisis is more than likely going to take a long time to be resolved. 

For those needing to make dramatic adjustments (and frankly having the privilege to do so), I have a few suggestions based on my 10+ years being chronically ill and experience as a stay-at-home parent. Obviously my suggestions cannot apply to everyone and I don’t pretend to speak for people who are unable to self-isolate at home. This goes out to all the people who have eaten fennel for the first time in their lives because it was the only fresh thing they could find at the supermarket. 

  1. Avoid trying to impose structure on yourself with big, meaningful plans. For example, “I’m going to re-establish my spiritual practices,” or “I’m going to write a novel like I’ve always wanted.” Instead, develop structure through routine. Maintain as much of what’s normal for you as possible, but don’t be afraid to embrace your relative freedom in planning your day. Maybe you’re not a morning person, maybe you are exhausted mid-day. Loosely plan according to your energy flow. If you can add the practice of something important to you, then do it in small doses. This is a marathon, not a sprint.
  2. If you were not somehow finding a way to carve out time to work at a big project or skill, you’re probably not going to do it now. Time does not magically create motivation or discipline. It does however afford you the chance to begin. Keep your goals and expectations low,  and instead deep dive into your curiosity, your desire. Avoid anticipating a particular outcome. 
  3. Find a way to move your body. Dancing, walking, yoga, low impact calisthenics, leg lifts in the bath. Whatever. You don’t need fancy gear or special training. No one gives a damn if you’re gassy or there are holes in your sweatpants. If you want to learn how to do push-ups, check YouTube for tutorials. We are not talking about weight loss and this is not a Hollywood prison montage. If you become Sarah Connor over this shit, you need to do some inner work.
  4. Be flexible. Access your body and your feelings regularly. Am I dehydrated? Am I not washing my clothes enough to have clean underwear? Am I feeling sad? Can I remove x, y, z tasks to give me more time to rest today? And listen, y’all. You need to shower. Other people seeing or smelling you should not be the only reason you clean yourself. 
  5. Don’t beat yourself up for binge watching shows or playing a lot of video games. Really don’t. It won’t help you make different choices later and the ability to make different choices later is what will enable you to find your balance. Nobody is out here learning calligraphy and harpsichord and six languages. I promise you. Just enjoy what you’re doing when you’re doing it and move on. 
  6. Try to notice when unchecked bias shows itself to you. For example, are you surprised (and maybe outraged?) by how hard it is to…. be the predominant caregiver? Stay at home with your kids? Educate your kids? Live with income uncertainty? Get your social and physical needs fulfilled with limited mobility and access? Remember this shift in perspective. Respect teachers, nurses, caregivers, stay-at-home-parents, single parents, chronically ill folks, and gig workers. Consider how we can show better support for each other going forward.
  7. Learn how to ask for help. Read The Art of Asking. Or like ANY Brene Brown books. Consider what kind of support has helped you the most in the past. Do you want jokes to make you laugh? Go ahead and let people know you need to see some funny memes. Do you have specific boundaries? You can talk about that, too. People may not reach out to you, but that doesn’t mean they don’t care. They might just need some sign from you.
  8. Generosity is nourishing, scarcity mindset is depleting. If you can give — listen to a friend vent their anxieties, offer toilet paper or diapers to neighbors, make masks for medical professionals and grocery store employees, buy a bidet and use washable cloth wipes instead of buying limited paper products, help someone pay their bills, share information on a small business having a sale, etc. — then it’s in everyone’s best interest for you to do so. In times like this it’s easy to feel like you have nothing to give. That is rarely true. Giving is so much more than money or labor. It’s a reminder that we can hold each other. 

And speaking of ways to give, I’ll include some links below to groups that I have observed doing some great work. Some are Denver based, some are in Tennessee or North Carolina. If you’ve got anything to add, feel free to do so in the comments. 

People who need things to do with little kids/tips for being at home (some are free, some are not):

DigitalDiary 3/3 – 3/9/2016

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Fury Road

 

 

Talking to people on a regular basis is more difficult when you’re perpetually angry. It’s also difficult to write about. There’s no way to dress up rage. Not unless you’ve got some righteous purpose, like your daughter was kidnapped or you’re Batman. Hollywood is good at making rage look fun, useful, or sexy.

The truth is that it’s ugly, generally useless, and always poisonous to the possessor.

Recently all of my female friends have been enthusiastically gushing about Mad Max: Fury Road. Many have described it as an amazing feminist film. From the previews I was looking forward to seeing it, too, and hoping to feel inspired by Charlize Theron as Imperator Furiosa just as I have been moved by powerful female characters since I was a little girl.

I suppose it started with Catwoman. Ellen Ripley. Sarah Connor. Dana Scully. Individual roles in movies that were not very good overall. The gist: Women who are (mostly) self-sufficient, tough, intelligent, passionate, and courageous.

At the end of Fury Road I found myself feeling… tired. Worn out. Wounded.

There was nothing wrong with the film and I really appreciated that the “wives/breeders” were not depicted as fainting, delicate little flowers under the protection of Furiosa. The fierce and knowledgeable crones were a great presence as well. I don’t think I’ve ever seen so many women in an action film. Plus it totally passes the Bechdel Test.

The women I have admired do not have episodes of dizziness, weakness, disorientation, visual disturbances, and/or irrational anxiety. The problems they have can be fought with their minds and their fists. Maybe explosives or giant robot suits.

If I could fight my way to redemption, I would. I cannot express how badly I wish I had more than just a nebulous phantom to fight. I would bloody my fists on its face, bite and claw like a rabid animal. All the tension in my body craves it, something to push back against. As it stands, the very nature of it sometimes prevents me from walking down the hall to the bathroom unattended. I am perpetually behind in cleaning, emailing, writing, and art projects.

What does my fight look like? What are my weapons?

This past week I’ve been sick with a head cold that at times has made me especially weak, which means a lot of time in bed resting. First I read Beyond the Miracle Worker: The Remarkable Life of Anne Sullivan Macy and Her Extraordinary Friendship with Helen Keller, then A Dangerous Woman: The Graphic Biography of Emma Goldman. In both instances each woman is faced with her own battles – Anne as an impoverished orphan experiencing fluctuating disability over the course her life, not to mention teaching the unruly deaf-blind child Helen Keller; Emma as a poor, Jewish Russian immigrant dedicated to the ideals of anarchy, art, and birth control for women.

Obviously their battles are much bigger than mine. I have always been grateful not to suffer chronic pain and it would be absolutely devastating to me if I couldn’t see my husband’s face anymore. Speaking in front of a crowd of strangers about subjects that will likely land me in prison sounds terrifying. The most I’ve ever done for any cause is write an article or sign my name to a petition online. (If only social justice was less social. Amirite?)

Rather than focusing on the dull subject of who is or is not allowed to feel like they are struggling or how that is to be experienced, predominantly what I selfishly take from these biographies is that if I can recognize the legitimacy of their non-physical, non-flashy fight, then what is preventing me from recognizing my own? If their real life sassy spitfire battles without guns are enough, why are my efforts not enough?

Anyone who has nebulous health issues knows that there is constantly a balancing act between pushing yourself forward and pulling back to recover. It’s one of the most insidious aspects of disability. What can I really do? What are my actual limitations? It’s hard not to trick yourself into feeling like a victim of your own body, or to put yourself in dangerous situations because you refuse to acknowledge your limitations. There’s bound to be missteps and failures.

At the moment, I am failing to recognize my own health and ability, even while consciously pointing to it, I suppose mostly because I have to keep trying and my reserve feels low, if not emptied.

I can say this for Furiosa – as I have tried to think of way to end this post on a hopeful yet honest note, a scene from the film comes to mind in which Furiosa’s will overpowers her injury and the circumstances surrounding her, and although it’s just a movie fantasy, it is a reminder that our will counts for something. I cannot apply brute force to change the reality of my episodes, but I can reach farther into myself and cultivate a will power that is not fueled by anger alone. In my spectrum of feeling, as a friend pointed out to me today, I am just as fierce in love as in rage. The women I have admired, both real and imagined, were not and are not cold automatons narrowly devoted to a cause. Passion and hope fueled and sustained their fight. If I burn out now, it’s because I’ve been feeding the wrong fire.

If I don’t see you

 

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On Saturday I bought five books of poetry, a book about psychoanalysis, and a book about sailing from the annual library fundraiser. It was hard to get through the transaction. I felt like my skin was peeling off and I was casually attempting to hold it back without being noticed as the library volunteer asked me to enter my pin number. Smile. Say thank you. Say have a good day. Take your bag. Walk away. 

My impulse is to hesitate before each action and contact. I don’t like to touch things without considering them first, without preparing myself. So I have to remind myself don’t hesitate and try not to wince at the contact with my paper bag full of books. Each minor agitation tells me I shouldn’t try to walk home. It doesn’t feel minor. And I was right. Just the sounds in the parking lot made me feel panicked and vulnerable. How could I have crossed even one busy street?

It’s exhausting to try to appear “normal” in this state. While I waited for a friend to pick me up from the library, I tried not to cry and shake. I tried not to let my hands coil and tangle. I tried not to stare blankly too long in any direction or let my eyes dart around in obvious distress. I sat where only people driving by would possibly see my face. The sky was darkening and the breeze hitting my skin smelled like rain.

I texted R (sort of) because I knew he would tell me it’s okay. He did. It helped. You’re safe. You’re okay. Stay here. Sit. Don’t cry. Wait. You can trust your friends.

Experiences like this used to drive me to isolation at home. Days or even a couple weeks would go by and I’d never leave the apartment without R or a close friend. Not even to take out the trash or recycling. I would avoid making any solid plans with people and feel tremendously guilty if I needed to cancel. I tried not to interpret the sound of their disappointment over the phone as annoyance and criticism. I tried not to imagine it if someone texted or called them on my behalf.

It’s easier now to take each day at a time and to recognize that the episode will end. I can’t go for a bike ride when it’s over, but I could go for a walk or wash the dishes. I can make dinner and enjoy the company of a friend.

My mom often used to tell me that as a child one of my favorite things to say was, “I can do it.” I said it with irritation, according to her, as if I was annoyed at the mere suggestion I couldn’t. As if I wanted to prove myself.

As I try to come to terms with being disabled, I frequently have to reaffirm for myself that I can do things. I’m under the impression that this is really common experience for disabled people (and I suppose very young children). How do you acknowledge and make accommodations for your disability without it ruling your life? How can I help other people see the full range of my capabilities while also not misleading them about my condition (which always leads to more complications, inconveniences, and worry)?

Quitting school was not a solution.
Isolation was not a solution.
Hiding was not a solution.
Lying was not a solution.
Stubborn pride was not a solution.
Pretending I would just “get better” was not a solution.

They’re still not solutions.

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In the past two months I’ve sold more art and writing than ever before. I’m engaged in two separate collaborative projects and hoping to begin work on planning the next Cat Party exhibition. There are other ideas circling my mind that I haven’t had time to work on yet. My enthusiasm and curiosity has not waned at all.

I guess it’s not something you say. I am doing things to enact the belief that I can still do things. Otherwise I don’t know what I look like as someone who can. I can’t see anything now. I am feeling around in the dark for my well, for the words to connect and for my world to inhale deeply.

 

On my heart, chainmail

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When I first started having episodes again — confirming that me and my doctor’s original hope that a period of being medicated would break the cycle happening with my immune system was not going to work — it was devastating. I felt betrayed by my body and I wanted to punish it.

This is not a new phenomenon for me. Between the ages of 13 and 26, I committed various self-harming acts against myself. Cutting, burning, binge drinking, not eating, purging, unprotected sex with strangers, and so on. It’s not that I felt sorry for myself so much as I was trying to find a way to exist. It’s difficult to explain that sometimes you might cut yourself in small, controlled ways just to prevent yourself from slashing your wrists.

I have never been ashamed of my scars because I know that, for better or worse, it was how I survived.

People learn new ways to survive all the time.

Almost immediately following the realization that I was going to keep having the episodes, I found that I didn’t want to eat. Smug satisfaction filled me when I portioned out very limited and specific amounts of food that I would eat in a given day, mostly to prevent me from being sick or drawing attention to myself. If my stomach revolted, I inwardly scowled. You don’t deserve to eat! A cold rage burned in my bones. I didn’t care about losing weight or anything like that. I just wanted to punish my body.

I wanted the hunger to remind me to fight.

Then that determination shifted from day to day. Sometimes riding my bike outweighed heavily restricted eating, or if my husband guiltily suggested that we splurge on a “fancy” coffee. It became difficult to predict how I would feel from moment to moment, so I followed that current and observed myself with bemused detachment. Part of me hoped it would escalate. That I could stop pretending to “handle it well”.

One day after a lunch date with friends — coconut veg soup, water — it occurred to me that I was engaging in thoughts and behaviors that mimicked previous eras of believing myself to be completely out of control, crazy*, and damaged despite the fact that those things are not true about me.

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I feel intensely. Some moments are suffocating, they’re too heavy. Something small has to come forward to clear the air.

bike ride
a long walk
a perfectly brewed cup of Earl Grey
the way heavy whipping cream billows seductively when poured into black coffee
a middle of the day text from R asking how my day’s been so far
going to an art exhibition downtown
a surprise gift from a dear friend
stitching while enjoying an audiobook from the library
writing for small jobs and writing for myself
weather warm enough to enjoy an evening walk and an ice cream
crossing a line through completed chores on my list
a satisfying meal.

Moment to moment still feels uncertain, despite the fact that I eat pretty consistently now. I wrote most of this a week ago, but I feel reluctant to share it. What if I’m not done yet? What if I want to skip meals? What if I need to lie about eating and a loved one is suspicious? Most of the time, though, I realize that the small things are collectively helping me view myself differently.

Maybe I don’t need this secret. Maybe I don’t need a back up plan.

Yesterday my husband and I went for a bike ride, 10.2 miles to and from a local trail. I wanted to keep going, but we both had things to do that required us to go back home. It’s not just the cycling that makes me want to keep going, it’s the trees and the air and the wild flowers. It’s the fact that every time I feel surprised to be here.

I still want to fight. I just want the fight to go down differently. I want to triumph, not just survive.

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* The “crazy” I refer to here is the popular expression of female insanity. The madwoman in the attic. Gaslighting. Etc. In general, the traits I listed are meant to be regarded hyperbolically and in no way as a fair description of people struggling with self-harming behaviors.

To caress my day

Discovering and re-discovering neighborhoods.

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We had a few days of warmth so people were out mowing their lawns, sitting and chatting on porches, smoking on stoops, hanging hammocks, and happily walking their dogs instead of merely tolerating the ritual. As it often does in northeast Tennessee, temperatures dipped down to freezing overnight and a lot of flowers died. In early spring everyone is hopeful for new growth, but we all walk around knowing the flowers and buds may die tomorrow. I have sometimes tried to coax the vibrant green beginnings of daffodils back into the ground. Just wait a bit longer. But they are just as eager as we are to feel the sun’s rays.

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I don’t think I understood before that there’s a difference between knowing you could lose what you have and being afraid you could lose what you have. When you know something could interrupt your life and remove people or things you value, it’s easier to feel the weight of a moment, even a very small one. You can appreciate it. When you’re afraid you’re going to lose a loved one or your home or your hair, etc. then you’re just collecting moments to enhance the melodrama of potential loss. You’re not present with those things.

As much as it hurts, that fear is a buffer between me and the real thing. It’s a safety net between me and the ferocity of my love, the vulnerability of existing in the universe.

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My work these days is both enriching of the present and of the preparatory kind. I am starting to feel really restless and I cannot bring myself to say, Just wait a bit longer.

Typically human of me

 

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I’m not sure how to talk about this because saying, “I’m disabled” doesn’t quite sound right. I am disabled, but there’s just something so heavy and restrictive about that statement, so final.

There’s nothing final about my experience.

My favorite part about riding my bike is the sense of autonomy I feel. For brief moments I look down at my legs and marvel at carrying myself miles away, up hills, down busy streets, fulfilling my own tasks. I am aware of the risks, but I feel confident that I could cope with those situations, and the confidence outweighing the fear makes me feel like I am the wind itself.

The first time I set out alone on my bike it was raining and cold. The house was empty with my husband and housemate each at their respective jobs. First I felt paralyzed with sadness, then I felt enraged by that paralysis. It felt like a poison. As I looked out the window trying desperately to think of what to do, I remembered how I felt days ago when my husband and I went for a bike ride that ended up being about 14 miles because I didn’t want to stop. I remembered the rage that kept building up and then dissipating with the next mile. I remembered how jubilantly I felt about my body’s power and ability.

As soon as I started pedaling, I knew I had made a good decision. The rain soaked me and my glasses fogged up. I almost cried several times, from equal parts sadness and gratitude.

I don’t have chronic pain. I have not lost any of my limbs. My hearing, vision, and sense of smell are all decent. I am not constantly sick from medical treatments. My body is not rapidly deteriorating under the burden of disease or illness. And even with those realities, people still do amazing things. Everyday.

Moments feel small to me lately. The giants have climbed back up the stalk and my house is not under threat of being smashed. Not right now. On a lovely Saturday afternoon my husband and I rode our bikes downtown to Atlantic Ale House for Noli tacos and beer. Others had the same idea, their bikes parked across from the cars while they congregated outside around picnic tables, leashed puppies, and cornhole boards. AAH is a small, new establishment, reflective of Johnson City’s development downtown. We were pleased to find that it’s style in no way points to a lack of substance. Our beers were delicious and I tried to make myself sip slowly while waiting for our tacos.

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R noted that just across the road are soup kitchens, low income housing, and for brief periods of time before they’re forced to disperse the occasional shanty town. Our city is not stranger than other cities in that signs of financial disparity are everywhere, but there is the peculiar balancing act of still feeling you have access to so much from below the poverty line without lying to yourself. To appreciate the wealth of a cold porter and fish tacos in the sunshine because there is this pleasure to be had for now.

I am starting to believe that our smallness is our greatest strength when we can embrace it. Especially combined with the fact that we’re so much bigger on the inside.