Brain Fooooooooooog

You know what sucks? Brain fog. Brain fog sucks. It’s part of the reason why it’s been so long since I’ve posted something. I keep forgetting. My memory is completely unreliable and I can no longer trust my own brain.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastels, and candlewax on stretched canvas. 2014.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastels, and candlewax on stretched canvas. 2014.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastel, and candle wax on stretched canvas. 2014.

I was thinking to myself earlier today, “I wish that I could show people what the heck this is like. It’s such an odd feeling and it’s difficult to explain. How do I depict brainfog?”

I drew a self-portrait with oil pastels, then poured candle wax onto my face. Candle wax is actually a pretty accurate representation of what brainfog is like. It’s this sticky, annoying semi-opaque thing that gets in my way all the time. The art project was actually pretty difficult to do because I currently can’t find any of my wooden pencils or my eraser. It’s hard to do art when you’re incapable of erasing anything. Also, please excuse my shitty art skills, I created it while having brainfog. And I have brain fog as I’m typing this now.

I’m still me, I just have bits of wax stuck in my brain that make it hard for me to do things.

One of the worst parts about this is that I don’t even realize its happening. Only about 12 hours ago did I realize that my brain fog returned about a month ago. It’s all starting to make sense now.

The last four weeks have been a clusterfuck of forgetfulness. I’ve lost like 8 things and keep forgetting to do really important stuff.

About six weeks ago, I bought really expensive tickets to see my favorite band of all time, Modest Mouse. I literally bought the last two tickets to a completely sold out show. I LOST THE TICKETS. I tore through my entire apartment, dug through my trash, had a panic attack, called my parents and made them tear through their house, all for naught. I literally cannot find them. I called the ticket company and asked if I could get them reprinted, to which they said no to. Apparently the tickets are impossible to reproduce. Guess what happened? I MISSED THE SHOW. I never found my tickets and I missed seeing the best band of all time. The show was a week ago and I still cannot find those damn tickets. Thanks, brain fog.

Last week, I realized at 3:30pm that I had an 7 page paper due at 5:00pm that I had not even begun to look at. I had completely forgot about this assignment and didn’t even remember until 3:30pm. Luckily, I was able to beg my professor for an extension and he gave me another week to work on it. But still, I’m forgetting about papers. This isn’t good.

I also lost the key to an important door at school/work. To check out the key, I had to give the worker my ID card. So until I find this key, I don’t have access to my ID card. And I can’t get into the door.

I keep forgetting to respond to important text messages and emails as well. I’ll read them, say to myself, “That’s important. I’ll respond to it later so that I can spend time on what I’m going to say.” Then never respond. To everybody who has been trying to contact me this month and haven’t gotten a reply, I’m sorry. Blame it on the brai-ai-ai-ai-ain fog.

I even had to write a note to myself to make this blog post. There’s currently a sticky note on my laptop that reads “Blog Post Idea: Struggling with Brain Fog. I keep losing my shit. Maybe paint something to go along with that.”

 

In the mean time, lots of detoxing!!!!! Detooooooooooooox.

Best,
Sofia ❤

 

I don’t know how you do it.

“I don’t know how you do it.”

I get this phrase from people all the time. And honestly, I don’t really like it.

I start to explain my life to people, how I’m working three “jobs” dedicated to social justice, managing 12-16 credits of school, working my way through my Lyme treatment protocol, and navigating through so much oppression from the medical industrial complex and widespread ableism. When I talk about these things, often times, people tend to, well, sort of freak out.

Photo on 2-19-14 at 3.29 AM

The people who say this to me cannot fathom the life I’m living. They cannot fathom why I’m doing all of the things I do, or the drive I have. They don’t because they haven’t, and may never have to, experience the trauma that I’ve felt. Furthermore, in their attempt at solidarity and acknowledgement of my struggle, these individuals actually alienate me even more.”I don’t know how you do it” makes me feel like a strange creature, a space that is unable to relate to my peers.

But really, I’m no different from you. I also procrastinate. I also binge on Netflix. I also have the problems you have. The only difference is that my experience with problems I face transcended into something bigger and has given me the drive to do something about it.

So don’t tell me that you don’t know how I do it,
Because honestly, I don’t know how I do it either.

Access Intimacy: The Missing Link

Mia Mingus, queer physically disabled woman of color adoptee, talks about Access Intimacy in this brilliant blog post. I have only had access intimacy once or twice in my life. It’s such a special experience that I can’t let it go.
Have any of you ever experienced access intimacy? What was/is your experience with it?

Best,
Sofia

Leaving Evidence

abstract painting with yellow, purple, pink and red spots.There are many ways to describe intimacy.  For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy.  But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it.  This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape.  I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability.  I think Access, as a framework, is powerful for so many of our lives.  Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy…

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Lyme, AIDS, and The Dallas Buyers Club

Yesterday, I saw the movie The Dallas Buyers Club. It’s about a rodeo man in Texas in the 1980s and his battle with finding effective treatment for his AIDS. After nearly dying from taking AZT, Ron decides to go to Mexico to pursue alternative treatments. He brings back a huge stockpile and starts selling them to HIV/AIDS patients all over Dallas and creates the Dallas Buyers Club. The FDA, doctors, hospitals, pharmaceutical companies, and even the IRS fight him at every turn.  The doctors that go against the grain are fired and get their licenses revoked. In the movie, according to the FDA, the government decides how people are treated for diseases, not Ron and other AIDS patients. His lack of agency fuels his battle even more.

Ron selling alternative AIDS treatments to Dallas patients out of his trunk

Ron selling alternative AIDS treatments to Dallas patients out of his trunk

Sound familiar? As I was sitting in the theater watching the movie, I just wanted to jump right into the movie and give Ron a hug. I, and so many Lyme patients, know exactly what he was going through. The government treats Lyme today like they treated AIDS in the 1980s.  There is confusion on how it is contracted, there are disagreements on how to treat it, and it is widely misunderstood- all while people are dying in the crossfire. Since the IDSA/CDC mandated guidelines are completely ineffective, patients are forced to look elsewhere for treatment.

AIDS treatment has improved drastically since the 1980s. This gives me hope that in 20 or 30 years, Lyme will be just as widely recognized. The government will have to look back and say “That was a mistake. That was bad.”

In the meantime, we have to be like Ron. Keep fighting for our basic right to have a opportunity at being healthy.

Best,

Sofia

P.S. Check out this article about Lyme that appeared in my school newspaper! You might just see a familiar name. 🙂

Dealing with Difficult People: A Rant

Sometimes people just suck. This is one of those times. And it’s also a testament to why being a college student and having Lyme disease is really, really difficult.

How I felt Friday afternoon. Photo courtesy of Lymelight.

How I felt Friday afternoon. Photo courtesy of Lymelight.

My school has some really cool services for people with disabilities. Because my health is so ridiculously unpredictable, I’m signed up to get these sweet services. At the start of every school year, I go to the Accessible Education Center and they write me a letter to give to all of my professors. The letter basically says I have a documented illness, I may miss class sometimes because of it, and the professor needs to be reasonably accommodating.

Now, I haven’t had a major crisis where I miss a bunch of class for a long time, but this letter serves as a safety net, just in case something does happen. The reaction I get from professors really varies. Some are very understanding and are willing to work with me while others outright refuse to be flexible. But, really, most of them just take the letter and say, “Okay. I’ll read this over. Thanks.” Or something along those lines.

One particular professor I have right now enthusiastically said he is very flexible about things like these. We had a 10 minute conversation about it, actually. He kept going on and on about how if I miss class, it would be excused. I thought to myself, “Great! This guy is awesome! This is going to make my life so much easier!” Boy, was I wrong.

Wednesday was a bad day. The kitchen downstairs served orange chicken for lunch. Almost immediately after eating it, I felt horrible. My gut is extremely sensitive because of all the antibiotics I’ve taken in the past 1.5 years, so I have to be really choosy about which things I eat, and which things I don’t. There was something in that darn chicken that made me feel like crawling up under a blanket and never coming out. Needless to say, I was not feeling well enough for class. So I crawled up under that blanket feeling awful and took a nap.

Fast forward to Friday. I’m feeling much better and I go to the class I missed Wednesday, which happened to be the class with the very flexible prof. After lecture, I tell him I missed last time because of my documented illness we discussed last week. I ask him what I missed.

“Well, you missed a quiz on terminology.”

“Is there a way I can make up this quiz?”

“No, there is not.”

Wait, what?? This is supposed to be the flexible one! What’s going on?

“Why is that?” I say, very confused.

“I can’t allow you to make up things that were exclusively done in class. It’s very hard to coordinate something that happened after the fact. Your absence is excused, but the quiz is not.”

Translation: I’m too lazy to do the 45 seconds of work it would take to set up a new time to administer the quiz, so I’m going to say some BS answer, like that retaking the quiz would compromise its integrity.

This is just so unfair. Why should my grades have to suffer because of something I have no control over? I didn’t miss class because I was lazy, I missed because I physically could not go. So now, I have a big fat zero for that quiz because my gut hates me.

So now I really have to go to this class, even if I feel like death. Maybe my “very flexible” prof will see me dying and he’ll finally understand why I didn’t go in the first place.

Rant: over. Thanks for listening. Ignorant people suck.

Sounds about right. Thanks, Calvin & Hobbs.

Sounds about right. Thanks, Calvin & Hobbs.

Best,

Sofia

Mindfulness Meditation and Anxiety

One of my most troublesome symptoms is anxiety. It takes over my brain and makes me freak out about things I don’t need to freak out about. A lot of times, this anxiety escalates into panic and I end up having a panic attack. Not very fun.

When you have something as intrusive as chronic anxiety, it’s important to have coping mechanisms. One of these is mindfulness meditation.

What is mindfulness meditation? Well, let’s start with mindfulness. Generally speaking, mindfulness is a mental state achieved by focusing one’s awareness on the present moment while calmly acknowledging one’s thoughts and bodily sensations. So, what does this have to do with meditation? Just about everything, actually. Jon Kabat-Zinn, pioneer of using mindful meditation for stress reduction, puts it very well.

“Practice moment to moment non-judgemental awareness.”

When we meditate, our goal is to achieve a calm and focused mind. When we add mindfulness to this mix, we are trying to have a calm mind while simultaneously being aware of our thoughts and bodily sensations.

Mindfulness mediation has lengthy list of benefits, ranging from higher brain function to less stress. I understand this sounds far-fetched, but seriously, mindfulness works.

Today, I had some spare time in between my classes. I found a secluded spot in the student union on campus and had a nice, short meditation session.

Me prepping for my meditation sesh in a secluded part of camus

Prepping for my meditation sesh in a secluded part of campus

Whenever I meditate I use the same routine. Firstly, I open this very useful app on my phone called Meditation Timer. It keeps track of how long I’ve been meditating and makes an inviting gong noise when I want to finish my meditation.

I divide my practice into three 3 minute parts, making for a total of 9 minutes of meditation. It goes like this:

  • Minutes 1-3: Meditating on the breath. During this first part, I am mindful of my breath. I focus on breathing in and out, as I normally would. If my mind wanders, I gently bring my attention back to the breath.
  • Minutes 4-6: Meditating on sounds. Now, I shift my attention from my breath to the sounds I hear around me. This an be anything from the heater vent buzzing, to the sounds of the cars passing by. I find this particularly enlightening because suddenly I realize just how loud the world is. It makes for great mindfulness.
  • Minutes 7-9: Meditating on touch and sensation. During the last part of my meditation practice, I focus on touch. The weight of my clothes on my body, the feeling of my body on the ground, the sensation of my eyelids touching one another. Once again, if my mind starts to wander, or I become distracted, I gently bring my attention back to touch.

By the end of my practice, I feel refreshed and ready to face the world once again. I do this often if I have to stay up late finishing homework and my brain starts to become lethargic. Just nine minutes of focus and I’m ready to go!

The view from where I did my meditation. A surprisingly nice day in Eugene!

The view from where I did my meditation. A surprisingly nice day in Eugene!

Best,

Sofia

 

Getting Settled In: Back to School

I moved this week! After spending a very relaxing summer with my parents in Sacramento, CA, I headed back to Eugene, OR to start my junior year at the University of Oregon.

My new place is just great. It’s a cross between an apartment and a dorm. I have a studio apartment, but I also have a meal plan. So there’s a kitchen downstairs with chefs that makes all the residents their meals, while my apartment is upstairs. It’s across the street from school, which is really convenient. Since I don’t have enough energy to cook and clean for myself, this set-up is absolutely perfect!

My room is a little small, but I decorated it with some cute things that make it a lot cozier. Plus, I don’t have any roommates! I love this! I don’t have to worry about uninvited guests or somebody who doesn’t understand my situation. I get this space all to myself. Also, I never have to shut the door when I go pee. This is fantastic!

My herx station. Comfy recliner, a squishy pillow, a soft blanket, and a cup of tea. Perfect space for a bad day.

My herx area. Comfy recliner, a squishy pillow, a soft blanket, and a cup of tea. Perfect space for a bad day.

I personally spoke to the chef downstairs about my diet. I was worried the kitchen wouldn’t be able to handle somebody who is sugar free, gluten free, and limits starches- among other limitations. I know it can be confusing. The chef was very kind and said she’s more than willing to accommodate my diet. Tonight for dinner, I had brown and wild rice, grilled chicken, cooked peas, and salad. Great meal!

School starts up again tomorrow. I’m signed up for some interesting classes and I’m looking forward to an interesting quarter. I think this apartment will be a key part of my success!

Best,

Sofia

My Mantra

A few months ago, Robert Fogarty of Dear World came to my university for a open photo shoot. Robert asks us the question If you were to share one meaningful message with your family, friends, and strangers, what would it be? This portrait is the result of his question. 

"You're stronger than you think."

“You’re stronger than you think.”

You’re stronger than you think. If having a disease like Lyme has taught me anything, it’s that I am stronger than I think I am. I’ve faced an innumerable amount of hardship from this disease, yet here I am, stronger than ever. I chose this message because as we face the struggles that life brings, we often forget our strength. Strength can be pleasantly surprising.

Whenever I am having a particularly bad day or I find myself in a rough patch, I think of this sentence. It becomes a warm, gentle nudge that reminds me of all that I’m capable of. I am always pleasantly surprised.

Best,

Sofia