Monday, October 16, 2017

Compassion

In my sophomore year of high school I wrote a research paper about vaccines. Literally every piece of evidence I found said that vaccinations were completely safe. The ideas linking vaccination and autism were published by a man who had a lot to gain from such findings, and they were quickly discredited. Since then, I have been immovable in my stance on vaccines. I'm usually really open-minded, but this was the one issue that I refused to see any other side on. People would tell me that they didn't "believe in" vaccines and I would smile politely while thinking about how completely and totally uneducated they were.

One time when I was a nanny, one of the kids I was watching had a friend come over to play. His mom stayed and chatted with me a little, and as it was back-to-school time she mentioned that she still needed to fill out paperwork to get her kids waived from vaccines. My opinion of her instantly changed. She told me about how she had relatives with autism and had experienced some sketchy things and didn't trust vaccinations. I quickly changed the subject, and then went home and ranted about her opinion.

Herd immunity! I cried.

Eradicated diseases! 

Measles at Disneyland!

She was wrong, and dumb, and I knew it. I felt like as a Sick Person I was allowed to be outraged that she would put her own kids and everyone else in danger.

Flash forward a few months and I find myself speaking with my new doctor (a ME/CFS and FM specialist!!). We discuss some of the new research about ME and she mentions that the HPV vaccine is a leading culprit in causing ME in young teenage girls.

I was shocked. It was honestly hard to breathe as I tried to comprehend this. The years of hell, the stripping of my identity, the pain and the sleep and the complete inability to function, I could've caused all that myself. It could've been so easily prevented.

Now, I don't mean to say that any of my opinions on this subject are fact. I got mono before I got ME, and it's a lot more likely that that triggered it than an HPV vaccination did. I am not, in any way, trying to say that you shouldn't get vaccinated. I am no doctor or researcher or other medical professional.

I'm just saying that I'm scared now. I hear vaccine and I think about what I've gone through and I get freaked about putting something in my body that (maybe) has the capability to ruin my entire life.
Now I look back at the woman that I briefly spoke to and her autistic family members. I understand a lot better why an experience like that might be traumatizing.

I'm embarrassed and disappointed that I had to go through a similar experience myself before I developed compassion for this woman. I should've been kind and compassionate either way.
I guess, in the end, emotion plays just as big a role in decision-making as facts do. I can know all the facts in the world but if I don't understand a person's emotions and experiences and thought-processes, I really can't understand their decisions.

I really really hope that I can be better at being compassionate to those that think differently than me, even if I don't see any reason for it.

I thought I was compassionate, and this was kind of a wake up call for me.
If this is something you struggle with, maybe this can be a wake-up call for you too.

Wednesday, October 11, 2017

You Are Allowed



I have often wondered about the best way to describe depression to someone that doesn't struggle with it. I have never found quite the right words to explain the magnitude and depth of the experience. The best I've come up with is: it hurts to be alive. Physically continuing to exist is painful. There is pain in your heart and weight on your soul and staying alive during this time is the hardest thing I've ever done.
I have felt this omnipresent pain and I am hurting again just writing about it. It's too close, too real.

These bad periods have left a permanent mark on me. They affect the way I talk and think and remember and feel. I am haunted, both by the memory of these times and by the knowledge that they will come again.

Whether you have depression or not, I'm sure you can reflect on the most painful experience of your life and agree that you would not want to repeat it. You would probably do everything in your power to avoid it.

I do, too.

I can always feel myself beginning the downward spiral. I notice it like you notice your hand on a hot stove. When I see it coming, I run away from it. I refuse to acknowledge it, I refuse to tell anyone about it, I refuse to spend any significant amount of time noticing it's existence. I continue with my life as if every breath is not becoming increasingly painful. I push it away until it becomes strong enough to push me back.

I am traumatized by my depression. I am never ready to face it again.

A few months ago I had a friend reach out to me for help. She told me about her trials and what she was scared of. She echoed a sentiment I have heard countless times: that she was embarrassed and guilty that something seemingly trivial was causing her such emotional turmoil.
I told her what I tell every single person that comes to me with their challenges: your emotions are valid.

I think we kind of learned, as a society, that there are certain ways we should feel. When something bad happens you should feel sad (but only if its significant enough) and when something good happens you should feel happy (as long as that doesn't upset anyone else). We have taught ourselves that, depending on the situation, only certain emotions are acceptable.
If you want to feel something, you better check the emotional guidebook first.

I am here to tell you that that is so incredibly false.

I have depression. I can literally get suicidal over chemical changes in my brain. Nothing actually happens, I just get sad. What is more trivial than that? If I am allowed to be depressed over nothing, you are allowed to be sad about nothing and everything and anything. Conversely, you're totally allowed to be emotionally stable during particularly gruesome trials. There isn't a tear quota you have to fill or an anger meter you have to rise to.

The significance of an event does not legitimize your feelings, and the insignificance of an event does not negate them. You do not need to justify or explain your emotions. You do not need permission to feel them. No matter the situation, your emotions are valid.  I firmly believe that this is true for every single one of you. I am working on applying that to myself as well.

I have found that being accepting of all my emotions brings me more happiness. The past few times I have felt the downward spiral begin, I have looked at it head-on. I accept that some nights I am just going to hurt and there isn't a whole lot anyone can do about it. You'd be surprised how much easier it is to just be sad than it is to forcefully attempt to push the sadness away (while in reality still being sad). Instead, I allow myself to feel negative emotions, and then I allow myself to heal from them.

This new process has made my depression so much easier to manage.
Accepting the validity of my emotions is the kindest thing I have ever done for myself.

I am begging you to be kind to yourself as well. Allow yourself to be happy or sad or angry or scared. Don't run from those feelings, embrace them. Let them touch you and teach you, and then, once you have grown from them, I can assure you that you will be more than capable of moving past them.




Tuesday, October 10, 2017

To You

I am so excited to announce that the Bateman Horne Center published one of my posts! You can find it here! It is an awesome website that has everything from patient stories to new medical research. If you have or are interested in ME/CFS or FM, you should definitely check it out!


Since my first post, I have had people reach out to me with love and support. I am hearing your stories and I am moved. It is humbling to be trusted with such personal experiences.

I am so incredibly touched by people that resonate with my story. I've spent my entire life idolizing the quotes and words of others. To have my own words shared in this way is an unbelievably surreal experience. It is something I never even thought to dream of.

My heart is about to burst at your kind words and positive feedback.

Thank you, thank you, thank you.

Sunday, October 8, 2017

Cloudy Skies




I started experiencing symptoms of depression when I was 16. That first year was really really hard. I was self-harming and planning my suicide and I wasn't letting myself eat or sleep. I didn't tell my family or get help for over 8 months. Honestly the only reason I'm still alive is because I am an expert procrastinator. Every time I decided to do it, I just told myself I could always do it later. Eventually, later became never. 

I am much better now. I haven't self-harmed in months. I have a healthy relationship with food and sleep and although I still experience weeks that are as bad as my first 8 months, they never last as long. I got through it the first time, and I know I can get through those periods again. 

The thing with depression, though, is that it is never gone. It's like a cloud that follows you around. Some days its a thunderstorm cloud, and it pours you with rain and strikes you with lightening. These storms can last days or months or years. 
Other days it's just a fluffy white cloud. The fluffy clouds can also last days or months or years.
Either way it is always there, blocking the sun at least partially. You never go anywhere or feel anything without your cloud above you. 

I know that certain conditions will make my cloud darker. Social media, for example, can start to make my cloud get stormy. I have learned to delete my instagram and twitter and snapchat when I feel myself getting worse. It helps immensely. 

Conversely, since moving to flagstaff, I have also had times where my clouds are fluffier than I've ever seen them. It's a new and unfamiliar sensation. Anytime I am perfectly content I cannot help but to bask in that happiness. I take note of these times and I work to recreate them. I remember them during the stormy days and they help me not lose hope. 

But during these happy experiences, my cloud is still there. I am celebrating the fact that it is white and fluffy and small enough to let some sunshine through, but I am still acutely aware of its existence. 

My depression is always there. It can be hard to accept this, to look straight-on at the facts: that I live in a body that is incapable of letting me be happy. I have to help it along with medicine and healthy food and candles. It's getting easier to manage every day, but I know from experience that it can come back and electrocute me anytime it wants, and I will have to start over. 
This makes happy times bittersweet (because I know how fleeting the feeling is) and sad times easier (because I know the fluffy clouds can come back too). 

Essentially, "I am both happy and sad and I am still trying to figure out how that could be" (Stephen Chibosky).

To those of you that struggle with depression: I see you, and I see your cloud, and I know that these supposedly opposite emotions are eternally intertwined. I see that your struggle is constant and I am cheering you on as you try to understand the complexity of your emotions. 
I wish you the sunniest of skies and the fluffiest of clouds. 

Friday, October 6, 2017

Understanding

My condition is confusing and complicated and even I don’t know what’s happening most of the time. My energy and pain levels can change literally instantaneously. I never have any idea how I’m going to feel even from one minute to the next. I can’t tell you how many times I’ve woken up feeling amazing only to find myself sitting on the floor 10 minutes later because I suddenly lost the ability to stand.

In summation: my condition is very versatile.

I never feel good, but I feel varying levels of bad. Some days are neutral bad and some days are super bad. For like a month over the summer I even had a few days where I was just plain neutral.
One of the many, many downsides of this is that people will see me on a neutral-bad day and assume that that is my normal. They see me at school or church or work and they don’t understand that what they see is me at my absolute best. My best is painstakingly dragging myself out of the house. My best is only missing one day of school a week. My best is neutral-BAD.

I absolutely LOVE my good days, but my good days are by no means the definition of my condition. People don’t see me on the days that I don’t wake up or on the days I am in the hospital or days that I am crying in my room unable to even call for help because the noise will hurt too badly.

No one that I know truly understands what I’ve gone through. Even my beautiful, compassionate, empathetic mother, who was and continues to be my greatest supporter and biggest advocate, cannot identify with my journey.

This knowledge is lonely. I’m sure all of you have experienced something and wished for someone to understand your situation. That’s why books and quotes and music and words of any kind are so powerful. When you read or hear something that you resonate with, you feel less alone. You know that someone, somewhere, thinks the way you do.

When I am feeling sad or lonely or misunderstood (as every emo teen does), this is what makes me feel better:

No one can really understand my individual experience, but that’s okay, because I would never want someone to understand my experiences. I would never wish what I’ve gone through on anyone. I am glad that my family and friends are incapable of connecting with me in this way.

If you seek a perfect understanding of your experience, you will most likely not find it. Even if someone has experienced the exact same thing as you, they think and feel and act differently, and therefore it will have affected them differently.

As I said, I have yet to find someone that truly understands my situation. Instead of being frustrated with those that do not grasp the severity of my condition, I am trying to find power in my ability to explain it to them. I am learning to find beauty in this process. I have found that I have to meet people halfway, and that I can’t expect them to understand me until I explain myself to them.

I hope you all find power and beauty in your ability to communicate your experiences with others.

I want to find that power myself.

At the very least, it’s pretty fun to watch people’s faces when I tell them that my heart doesn’t work.

Wednesday, October 4, 2017

Pass or Fail


We live in a culture that demands clearly defined roles for every individual. I see these roles in my own life, and I hope you see them in yours because I can assure you they are there. 

Before I got sick I was a Runner and a Student. This was my identity. I created and perpetuated this image of myself. I spent time with Runners and I complained about Homework and I worked hard at these things and I made them Me. 

Then I got sick, and suddenly I wasn't a Runner or a Student. I was physically incapable of being either of those things. I felt like I was failing because I was failing to perform in a way that represented the Identities I had chosen.

Eventually, I moved past this, and my new identity was Sick Person. I didn't have anything else anymore, as I wasn't really doing anything other than being sick. And then, I had a few months where I was almost better. I was working out and I had a job and I functioned almost like a healthy person does. This period of time was a blessing, but it also dismantled my identity of Sick Person. I felt like I was failing because I was failing to adhere to this Identity that had been forced upon me.

I have had many identities that have been created and then replaced. I'm sure you have to. Some of my greatest sorrows have come from watching the deconstruction of an identity.

But I do not have an Identity that can be destroyed. I do not cease to be a runner just because I am not currently running. I do not cease to be sick just because I have a few good days. These are experiences that have irrevocably molded my physical, mental, and emotional self. They are part of my identity whether I am actively participating in them or not.

A key concept in Buddhist teaching is the Non-Self. They believe that nothing is permanent, and that your conception of self is incorrect because you are constantly in a state of becoming. You cannot know yourself because you cease to be yourself with every second that passes. In Buddhism, suffering is caused by our desire to cling to an Identity that is not real
This is maybe extreme, but I think it is important to consider when evaluating your perception of yourself. 

When you create an Identity, you create guidelines that limit your ability to become who you are. You use these guidelines as a way of measuring your self-worth. You act under this Identity and you use it to determine your success or your failure. 
But if you strip away these Identities you will find that at your core you are simply a Person. And "you can't pass or fail at being a person, dear"  (Neil Gaiman). 

I am a Runner (even though I haven't run more than 4 miles in the past 2 years) and I am a Student (even when I miss class) and I am a Sick Person (even on days where I am able to function at a reasonable level). I cannot pass or fail at these things because they are simply experiences that I have acquired during my journey through Personhood.
Throughout my life I am going to continue to gather new abilities and mindsets. I am constantly in a state of becoming. I hope that as I become more, I don't let these things determine who I am as an individual. 

I have many talents and traits and thoughts and ideas and these in summation, not individually, determine who I am. 

Tuesday, October 3, 2017

Kindness is A Major 🔑

On Tuesdays and Thursdays, I have my longest class. It’s still only an hour and 15 minutes, but for someone that stops circulating blood after 8 minutes of sitting, it feels like forever. I love being at school, but sitting through this class generally ranges from mildly uncomfortable to completely hellish. In summary: Tuesdays and Thursdays are hard.

Last Thursday, I left this class feeling dizzy and weak. I drove to the building that my next class was in, and I parked in my designated handicap parking spot. After I pulled in, I noticed that a red car had pulled up behind me, blocking my car from behind. There were two large guys in the car, and they had their windows down with music blasting. I made uncomfortable eye contact with one of them while getting out of my car. I felt awkward and confused and so I walked in quickly, forgetting to grab my water bottle or lunch. As I walked away, one of the men yelled after me, across the courtyard, “Bitch doesn’t look handicapped”.

At this point I was already almost inside and couldn’t do or say anything without turning around and walking all the way back to their car. In all honesty I probably wouldn’t have said anything anyways. What do you do in that kind of situation? Explain the complicated internal processes that your body is incapable of completing? Flip them off? Give them a copy of your extensive medical files?

Instead I continued walking with my head down. I felt dirty and ashamed and threatened. I was scared of these men and the manner in which they spoke to me.

I got increasingly sick throughout the day due to the emotional stress of the event and my lack of food or water. By the time my last class got out I was seeing black and shaking so badly I couldn’t drive myself home. See, I am sick! I thought, as if my failing vision and unstable gait somehow proved to those long-gone men that I deserved a handicapped spot.

I wish this was an article about not caring about other people’s opinions, but it isn’t. I’m not at a place where I can comfortably do that. I spent two years being told by medical professionals that my inability to function was in my head, that it was my fault, that it wasn’t real. I just can’t handle being told that by anyone else, even rando college kids. Hopefully I’ll get there someday.

For now, this is an article about being kind.

I hope that when you see something that doesn’t make sense to you, you proceed with compassion and curiosity rather than judgement and scorn.

I look completely and totally healthy, but I am not. My heart doesn’t work and my brain is inflamed and my body is attacking itself. I simply do not have the energy to give to people who think that their limited understanding is truth.

Let’s both try to not be those people.

Monday, October 2, 2017

Magic: An Essay on the Power of Words

Flashcards are my nemesis. When I was learning to read, I often sat my tiny self onto the corner of an enormous beige couch in my living room. I would sink into the crevice between the cushion and the armrest as my mom flipped through another set of flashcards about sight words, vocabulary, and punctuation. I hated learning to read.
Now, the English language is my passion.
Beginning in 7th grade, I was an avid runner. I dedicated hours a day to running, I got up at 3:00 AM to run before my classes started, I spent free time planning training schedules, and I poured my heart and soul into the sport, becoming increasingly more skilled as my dedication payed off. When I got mono my junior year, and then chronic fatigue syndrome after that, running was taken away from me. Despite this incredible hardship, I found some solace in a new hobby: calligraphy.
In October of my Junior year, symptoms of depression began. It felt like holding my breath under water. I convinced myself that I could just hang on, but in reality I was running out of air. When I was in the depths of suicidal idealization, I turned to quotes. I looked up lists of reasons to stay alive, I found beautiful words, and I read other people’s stories. When crippling anxiety made it impossible for me to partake in social situations, I read. When I was overcome with indignation and rage, I wrote. And when I finally found the strength to reach out for help, I was blessed to have the entirety of the English language at my disposal to communicate the pain I was going through.
Words are magic. I will forever see them as such.

As the pronunciation of two-letter words slipped my mind and piles of flashcards seemed never-ending, I was preparing myself to find power in language. Perhaps I struggled so desperately on that beige couch because difficulty always prefaces beauty.

Sickness and Guilt

In my life, being chronically ill has meant not working out, not going to school, not getting out of bed, and on some days not even waking up. 





Within the first few months of being sick I had to switch to online schooling. It was completely impossible for me to pay attention during class and within the first month of my senior year I had already accrued almost enough absences to be disqualified from graduating. Now, several years later, I have recently begun in-person schooling again. I absolutely love being at school again. I love going to my classes, I love talking to people, and I love being able to leave the house. 

Of course, on some days, this is still not feasible. Some mornings I wake up for school and realize I am not able to get out of bed. When this happens, I usually go back to sleep only to awake a few hours later and realize that I've missed another day of school.

I don't drink, but I imagine this experience is similar to when someone wakes up after a night of hard partying. You feel like crap, you're incapable of functioning like a normal human, you've lost hours of your life and you're not really sure what happened during them, and on top of all of that, you're now way behind on work. 

It is super not fun.


On days like this, it is so easy to hate yourself. You wake up trapped in a body that won't let you do the things you want to do. I'm a college student that desperately wants to attend class. I just want to be able to do what literally everyone around me is doing with absolutely no problem. I want to go to class and learn and stay awake long enough to do my homework. I would love to get a job. I want to have the energy to meet new people and spend time with my friends. 
The bottom line is that I'm never going to be able to do all of those things without issue. On some days, I'm almost okay with that fact. But on other days, especially those staying-in-bed days, I hate the body that I am trapped in.


There are a lot of very negative emotions that come with that hatred:

  • Anger. I get mad at life and at karma and at God and at any other cosmic being that I can point my anger towards. Most of all, I get mad at myself for having such huge limitations in the first place.
  • Hopelessness. When I'm feeling particularly sick, it makes me take a good long look at my life. Sometimes I am weighted down by the prospect of living my entire life this way. I look at the next 4+ years of school, a future job, raising kids and having a family, and I cannot help but feel that none of those things are worth doing. They make me too tired.  There is no cure for my conditions. There is nothing I can do to fix myself. I am stuck in a body that does not function. This knowledge is pretty good at driving all hope away. 
  • Guilt. Above all, I feel guilty for allowing myself to be sick. I feel guilty for not going to school, for not cleaning my room, or for canceling plans with friends. I feel as if it is my fault that I cannot get out of bed. I feel like I've let down my teachers and my peers and my roommates and my parents and that cosmic force that I was yelling at before. I feel like I am being lazy. 


Negative feelings are natural and normal and you are absolutely allowed to feel them. I would never sit here behind my laptop screen and tell you that your life isn't that hard, you just have to look on the bright side! Ew. I want to puke just writing that. 

But sick days do get a little easier when you accept that your limitations are a part of the life that is uniquely yours. This is not easy. I am not particularly good at this, and I've been practicing for years. 
Some days I sit in my bed and cry and scream and curse the world.

Other days, I do what I can, forget what I can't, and let myself be sick. After cursing the world a little. 

We live in a fast-paced society. We don't celebrate the athlete that takes a rest day (even though they need that rest day to become better!) or the mom that put her kids to bed early (even though she might have strangled them otherwise!). We celebrate the workaholic, the gym rat, and the supermom.

Days off are allowed. Taking care of yourself is allowed. Canceling plans is allowed. Being sad about being sick is allowed.  

Being okay with your sick days is most definitely allowed.



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