Reflections: Where have you been? What is up?!
these are the questions I would expect a caring and concerned friend that I talk to regularly would say.
However, I don't talk to anyone like that regularly, at least not everyday. Perhaps, once a week do I talk to my friends. And while I wish those conversations were more expressive, they're not. I focus my energy on being outside of myself, and fully dedicated my energy to actively listening to friends and validating them. That's my ideal friend. I'm my ideal friend. I haven't met enough likeminded people who value relationships the way I do.
The relationship with self is my most cherished relationship. In toxicity, that relationship is self absorbed, self loathing, one dimensional. In harmony as I see it: inquisitive, cyclical, self nourishing, and self sustaining. This relationship becoming my focus above all others, has brought me to push myself, radically love myself, take care of myself with little to no outside care, and most of all become self sustaining. This self sustainment is not to be mistaken with plain independence or individualism, but self awareness.
My radical self love journey is not on the learning curve of late 2016 anymore, it's almost purely reflective. I reflect on my though process and how it affects others. My dedication to my best self interests above all, couples with a positive mindset has kept my bountiful&busy - able to give more of myself to other people with and without compensation.
To someone, we are all on the learning curve, and thus must be patient. At least for where I'm at, I know that I won't be sacrificing myself to understand that patience for self and others.
I'm so in love with myself. So in love...more than hate and disgust. I'm bargaining with myself, troubleshooting, asking for help, receiving help, and reflecting along the way. There's been no lesser amount of strife for me, but its burden does not bear the same weight.
How I've felt
I've mostly been MIA and depressed this month because of those bad boys above. I last wrote about this, and they're still there. I had two boils for about a month. One just really hurt and started to make me redistribute my weight on my arm differently. The other, because the largest, most painful boil I've ever had. These two alone, cost me 200$ this month on medical attention and supplies. This experience was the worst I ever had, truly unable to move for about 2 weeks, and struggling to be semi mobile for bout 3-4 weeks. But, this experience was monumental. Researching on my own, I knew I likely had HS- Hidradenitis Suppurativa, a more common than you think, skin disease. It's chronic, not contagious, extremely painful, and is life long. It is not widely researched, and may not look 'that bad', but HS is a disabling condition. I want you to see it not because it's gross, but because I was in pain. You look at these photos and imagine a baseball or bigger being placed to connect your arm and torso. You can't, because how would it get in? How would it fit? That's the point, your body isn't made for that.
Another disability you say?? Yes. I always knew I had the condition, but didn't know it was another disability. My own excruciating pain and years of medical procedures didn't bring me to that conclusion. But, it was finally validated. This felt good because I learned only in going to a specialist for this condition that it is extremely painful. It's not my imagination. Tylenol is not enough, hospital grade drugs are. Also, none of my multiple cleanliness and hygiene routines cause or significantly effect this condition, it has a hereditary aspect, and one you get it, you'll likely always have it regardless of lifestyle.
On a side note...
When I came into Disability theory and identity, it was wholly empowering and eye opening, to experience how much solidarity existed around the globe for what I felt and how I had been treated. But for this HS flare, it was scary and defeating. It felt like this disability was a death sentence. It could only be treated in a reactionary way, it was expensive, it was unavoidable, it was not manageable with a full time job.
You know how/why this boil was drained, how it 'popped' if you will? I asked my friends to pray for me and that night I woke up in pain [not unusual], but was in a pool of my own puss. Gross, but I was ecstatic.
A little known fact is that in all of my suicide attempts, I had a painful boil that left me barely able to move and I was menstruating. But what I also learned about this newly identified chronic illness I had was that people with it often become depressed and obese. I had never correlated the physical pain and mental exhaustion of not being able to move with my mental health state.
Suddenly everything made sense. My suicide attempts were of course not due to my own weakness, my relationships, or my apathy, it was a multitude of factors, and suicide attempts always are. Now, this post, better yet this blog, is not about me still deconstructing my suicide attempts, it's about me as a living, breathing, human bean who lives and thrives with many intersections of identity, oppression, and experience. What's interesting is that I've had this condition since I was 13 and was never told about its correlation with mental health, its painless options with specialists, or its non existent relationship with preventative care [nothing you do will stop it]. This reflects how inaccessible my healthcare has been. And just like Serena Williams mentioned in her new show, I know my body. Being Disabled and growing up low income, means I know my body. I know how hard I can push without taking a day off and risking transition into poverty. Anddddd living in a capitalist society means knowing you can get fired because of this. And, that you may experience Disability discrimination because of this.
I'm still getting used to my short hair. I LOVE THE LOW MAINTENANCE & THE LACK OF SWEAT. I'm getting used to the lack of styling, the questionable stares, and how much fatter my face looks. I'll live, but look at these #LOOKS.
What I've been saying [my fav tweets]
What I've been doing
May has been a month of action from D.C. to Chicago. I've been arrested and detained, marched on the capitol, and kicked out of Chi city hall. It's not something to be 'proud of', but represents my means of resistance: my sacrifice of safety and sacrifice of privilege of ambivalence. Taking arrest seems necessary and dangerous but is actually impactful and in this case organized. For my job, my politics matter and are alive. I practice them as I see fit, and come hand in hand with many willing to put their body, safety, and wellbeing on the line to do the same for your liberation and freedoms.
1. I'm more exhausted than ever.
I may go a few days doing the most.tm, but then must go days deflating. Doing the most can mean personally socializing, going to events, travel, etc. I AM TIREDT. Not because I don't exercise enough, but because it takes a toll on my mental health. Spoon theory is just one way of putting it, but it clearly reflects how I try to explain social exhaustion to people. It's not just about talking to friends, it's interacting without people on your way to your car or walking your dog, calling your bank, talking to your boss, going to a meeting, making social media posts, etc, it's a lot.
2. People give a shit about me.
We appreciate seeing credit where it's due, but the willful attention yo your self is stressful. I've gotten more appreciation and congratulation from friends, colleagues, family, and random people than ever. I appreciate it, but it's stressful. I love it, but it's stressful. It gives me immense anxiety. That's why I struggle to speak of accomplishment outside of job interviews. Do humble call themselves humble? They say thankful. I am thankful for all the opportunities and awesome people I have come across. I aspire to be the best I can be to my ability, and now that I'm more of a do-er than think-er, my reality is praise.
In my hyper anxious mind, sometimes that is the easiest factor to calm me down and realize I am doing the most and more than what has been asked. However, constant praise is taken as fake to me. When you maybe haven't received enough visible love and validation in your life, you can't receive it. I cannot wholly receive love and praise but I appreciate it. And, I'm glad I'm not the only one recognizing my strength and efforts.
3. I got this.
Who knows if I am in my prime? I don't, because I'm keen on making my present count. I can literally do whatever I put my mind to and build support for. My strength is not necessarily my individual will for my individual needs. but my interests and dedication to serving those is need for more - resources, education, visibility, etc. There's so many jobs I could have, but the one I have now is perfect for me, and I'm good at it. This is a period of transition for many too -- I'm still without a primary care doctor or access to my longtime medication, friends are changing or nonexistent, my concepts of relationships are changing.
But most importantly, I'm loving life, and am beyond survival. I am living, and am happy.
The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. "Spoons" are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
This metaphor is used to describe the planning that many people have to do to conserve and ration their energy reserves to accomplish their activities of daily living. The planning and rationing of energy-consuming tasks has been described as being a major concern of those with chronic and fatigue-related diseases, illness, or conditions. The theory explains the difference between those who don't seem to have energy limits and those that do. The theory is used to facilitate discussions between those with limited energy reserves and those without. Because healthy people typically are not concerned with the energy expended during ordinary tasks such as bathing and getting dressed, the theory helps healthy people realize the amount of energy expended by chronically ill or disabled people to get through the day.
Spoons are widely discussed within autoimmune, disability, mental and other chronic illness online communities, as an emic descriptor. The term spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory.
The term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory". The essay describes a conversation between Miserandino and a friend. The discussion was initiated by a question from the friend in which she asked about what having lupus feels like. The essay then describes the actions of Miserandino who took spoons from nearby tables to use as a visual aid. She handed her friend twelve spoons and asked her to describe the events of a typical day, taking a spoon away for each activity. In this way, she demonstrated that her spoons, or units of energy, must be rationed to avoid running out before the end of the day. Miserandino also asserted that it is possible to exceed one's daily limit, but that doing so means borrowing from the future and may result in not having enough spoons the next day. Miserandino suggested the spoon theory can describe the effects of mental illnesses as well.