spoonie – Raelee Rowen

Remission Anxiety

I cannot fathom the pursuit of one interest.

My passions and goals are not neatly typed out into steps.
I don’t have one ideal I aspire to.
I won’t be able to reference my childhood fantasies in a future acceptance speech.
I have never focused on one thing long enough to become an expert on it.
I don’t have neat categories. No aesthetic I could be the face of.
There is no single lifestyle I can be the spokes model for.
I don’t have the cutthroat ambition needed to attain some level of greatness.
I don’t have what it takes to reach career or wealth levels that would impress the people around me or the kids I went to school with.
I will not cause any envious chatter in circles of people I don’t know.
But I wanted to.

For a few years I thought acting could be my thing. I felt like it was perfect because each role is different, a new set, a new cast. But I never got far enough into the business to get a taste of that variety. The environment got toxic, and I started making choices that made me dislike myself. My health got in the way of bringing my best work to the stage. Rehearsals went long; the amount of sleep I needed to rejuvenate myself was unattainable. I wasn’t able to create the depths needed in my characters because I wasn’t willing to be any more vulnerable than I already I was. I was never comfortable taking on relationships within a show beyond a G rating – and I didn’t have the drive to find other opportunities that would have let me stay within that comfort zone.

I kept at it while it was easy and felt natural.
Once I was asked to go beyond that, I walked away.
I quit.

I’ve since realized that this happens to me a lot. I quit a lot. And it’s ironic because I consider myself a “Learner.” I love going to school, have you seen my highlighters!? I read so much that I have an instagram dedicated to books. I watch documentaries! But something about “Learner” implies a level of commitment I don’t possess. I tend to present the bare minimum of what I am capable of. I do more than what the average is, but it’s not the best I could do. I am a perfectionist who procrastinates. I let myself down, constantly. But I do not push myself to do better. I don’t know how.

In high school I hardly put effort into my homework. I did some of it the day of or copied things I knew I could do but didn’t want to do. I tested well enough and had enough jive with teachers to get extensions, and those are the only reasons that I managed to graduate with a GPA over 3.0.

I could have done better, I know that.

But I talked myself out of it, almost every time. Home wasn’t a happy place to be, and I was only ever at school or at home. If I had access to it, hadn’t grown up with health issues, or had I not gone to Narcotics Anonymous meetings every Friday for about six years, I am sure I would have gotten into addictive substances. Instead I found that reading a lot and watching movies on Netflix was another way to numb myself and make the days go by faster. For most of middle school my memories look dark and feel heavy. Happier memories are of those moments I remember thinking, “oh good, a second of lightness.”

I think I have inadvertently trained myself to be afraid. I have come to find a sense of comfort in the darkness. I fall into this pattern of working my ass off, only to end up falling off the face of the planet. I rarely feel like I can find a happy medium. I would either be up till midnight for a week straight, working on missing assignments, trying really hard in my classes, eating three meals a day, writing and singing, and keeping my room clean. Then suddenly I would crash. I would stay in bed till noon, eat junk and leave the trash on the floor of my room next to yesterday’s clothes. I would skip class physically and/or mentally.

Senior year I dropped out of my college level science and math classes because I had gotten sick (again), missed two weeks, and was too overwhelmed by all the work waiting for me when I came back. At that point, I didn’t need the classes to graduate, and it was made clear by the attitudes of the people around me that me going to a big university the next year was a non-option.
My confidence was shattered, my motivation was shot. It was November and the cold was creeping in. Instead of letting it take over, I dropped the classes.

I don’t regret that choice, because there was too much happening in all facets of my life in that moment – dropping one of the stressors was imperative and I wasn’t allowed to drop my parents. However, it created a trend I have since been trying to shut down. I have turned my poor health into a crutch. If there was ever anything I couldn’t handle, if I ever get scared or overwhelmed, all I have to do is pull out my platinum health card.

Now, technically, it is a health issue. I have only ever lied about having colds in high school. I do have a weak immune system, and at least two rare diseases. But I think the argument could be made that it is a mental health issue, and not to blame on my physical health.

In lieu of an addiction to drugs or alcohol, I have formed an addiction to being “sick” while also fearing it to the point that I’ve developed an anxiety about it.

The idea of getting severely sick again and having to quit my life again is gut wrenching and terrifying. I did it two years ago. I did it for a lot of my childhood. Having to take a step back from everything I want to accomplish and enter a world where all that is expected of me is to get well and rest – it’s awful. I can’t even feel happy about what I have achieved because once I am sick I fall behind everyone around me. I am no longer considered a player in the game.

It instantly feels like no one expects me to live, only to survive.

But gee… that is delicious when I am healthy and feel like I am failing.

So the second I do get sick, whether it is a cold or a disease decides to relapse, I am riding that Nope Train. I forget to do anything that makes me feel good, only the things that keep me feeling bad. I forget to brush my hair. I forget to put on clean clothes. I don’t read, or take the dog out so I can get a breath of fresh air. I forget to eat real food.

For several days I am 13 again, wrapped up in cozy blankets and watching beautiful movies, lost in a daydream about what I’ll be someday when I’m older and well.

And then when I don’t need the prescriptions anymore or the sniffles ease, I am faced with the realization that – I am older, I am well. That Nope Train has been coming around for 10 years now. This game is no longer new. I can’t keep hiding.

I like to think that every time I reach this point of realization, I get better at battling it.
I come up with new ideas on fighting myself. I get better at putting limits in place:

“OK, this time, I only get to throw a pity party for one extra day after being sick”
“This time I have to write what I am frustrated about”
“This time I have to finish x amount of chores so that I push myself to move around”
“If I stay home, then this time I have to keep up with emails and I have to respond to the texts that friends send”

I am terrified and skeptical, daily.
I am scared in my own skin; I am scared of pushing myself too far, of trying too hard.
I don’t want to fail at something I want. If I get sick, then it wasn’t my fault. I never had a chance! “My health got in the way and I had no choice but to take care of myself!” If I half-ass it then I can always say, I could have done better if I tried harder. But if I give something my everything; if I go after the things that I want and dream and crave, there runs the massive risk of failing at it.

I am so scared of getting into something, and really loving it… only to have to quit.
I simply don’t trust my own remission. And as much as we say that failure is just a stepping stone, it fucking hurts and it’s severely uncomfortable.

Sure, my health doesn’t have to dictate everything in my life.
But in the past it has.
In the past it has stunted me.

Who is to say it won’t happen again?

~Raelee

The original version of this post was sent to The Mighty around 2am about 6 months ago, when I was in the midst of a panic attack and finishing up my associate’s degree. Recently, The Mighty has changed their publishing rules and format. Before only some entries got posted, but recently they have gotten access to a larger server and now are publishing everything. So they’ve gone back and published every previous entry they passed on as well.

As a writer, this does feel like a step back because now its just a free-for-all-social-media. But as a #spoonie, I think this is utterly fantastic because it will not only widen the scope of who publishes their stories, but also widen the scope of the type of stories.

It turns out that another version was also in my drafts here on WordPress, which is what led me to editing it and posting it today. That version was called “This One Has No Answers For You, But Many Questions For Myself.”

You can read the original version here on The Mighty’s website.

Today, I am Angry.

This week has been a nightmare.

As a whole, no one likes cranky ill people. Society wants a pretty, innocent-looking, sick person. They want someone who has faced adversity down the throat and come up with a way to spread love and joy to their community. They want a selfless sick person. They want to be able to pity someone without feeling uncomfortable.

I am not that kind of sick person. I am selfish and greedy. Right now, I am an angry sick person.

I am sick of feeling like I am so close to something that I’ve wanted for a while and then having it ripped from my grasp. I am sick of feeling like a ghost in my own life. I’m mad at myself for even caring that the people around me don’t notice I am missing.

I’ve tried to be the nice sick person. I really have. I apologize to other people for my being sick. I rejoin my life and the people around me say superficial “omg we missed you, are you feeling better!?” and I say “I’m sorry I’ve been gone” to them. WHY!? What could I possibly be sorry for!? Oh, gee Raelee. How dare you have a shitty immune system and people have to find ways to get by without you. It is so absolutely your fault! (Also, I call BS that you missed me. Dude, it takes 2 seconds to message someone on Facebook. If you actually miss someone, then send them a quick message so they know. Don’t pretend afterwards just to make yourself feel like a decent person. Asshole).

Being sick makes me cynical, so I’m sorry, I can’t be your nice little sick person. I’m too pissed off. I’m pissed off that I feel like I’ve missed out on so much. I’m pissed off that the idea of travelling is intimidating, because what if I get sick? What if my body can’t eat the local food? I hate that I was sick and depressed in high school so I didn’t have the motivation to go to a big expensive school like I always dreamed. I’m tired of having to drop classes, or having to cancel plans with friends, or having to pull out of shows. I’m tired of having to stay inside on sunny days. I’m tired of postponing plans for myself. I’m tired of never ending positive people who think they have all the answers. Like, no! I don’t need to keep my chin up! I don’t need to pretend that I’m not hurt and angry. I am allowed to be angry.

I am tired of having to choose between my health and experiences.

This week I had to take a break from my daily routine because I got a freaking flu thing. At first we were scared that it was my GPA coming back but I’m like, 85% sure that it’s just a flu. They checked my lungs and they’re fine. Anyway, I had to miss rehearsals and filming for a project I was passionate about. I hadn’t gotten to audition for it because that was back when I was really sick, but I was assisting the acting director. They filmed Friday and Saturday. I got to stay home.

So I’m really angry.

And it’s times like this, when I REALLY can’t deal with the “Everything happens for a reason <3” type people. I am one of those people, when I’m well. So I get it. You’re not only trying to help me, but also yourself. You think that if everything happens for a reason, that there is no such thing as a bad thing. But I’ve got a limit. And at some point, if things I have looked forward to and worked my ass off for keep getting taken from me, I’m gonna get pissed off. And that’s where we are at right now.

I know that it isn’t much fun to hear about someone who is angry. Especially when the events triggering such anger are out of reach and beyond anyone’s control, so no one can really help fix it. And I know that it’s not good for me to be angry forever. So, I try to only let myself be angry for a little bit and then I try to take care of myself and take advantage of the situation. Not everyone gets to stay home when they are sick. Not everyone has access to the medicine they need to make themselves feel better.

Give me a day or two, and I’ll think about those things.

I just needed to rant. Because I think it’s important to get things off my chest, and especially things about my health. That’s why I started this damn blog in the first place. So this isn’t funny to read, and it’s not inspiring, and it’s not eloquent. But it’s something that is a part of me, so it is something that needed to be shared.

Most of the people in my life are good at not crossing into that dangerous territory that Healthy People tend to go when a sick person is ranting, but just in case I thought I should throw this in: I don’t want posting this to result in a spew of comments full of pity. I don’t want apologies from anyone, I don’t want excuses. I just want to rant about something that is infuriatingly hard to deal with. I want to remind y’all that the sick aren’t always cute little happy kids. Sometimes we’re cute angry adults.

~Raelee

Note to Self: If you’ve known someone for x amount of years and they only interact with you when they’re drunk, chances are they don’t give a flying rat’s ass about what happens to you. At some point, you have to give up the “Well, you never know what they are going through” type thoughts, and just focus on the people who love you and deserve your compassion. Being empathetic doesn’t have to take a toll on your self-confidence, and it doesn’t mean that you should let people walk all over you.

Tears and Fears

Last week was my last infusion for my GPA, as well as a first-time meeting with my new rheumatologist, the person who is my new go to doctor. During this whole journey, every doctor we came across told us that any GPA question we had would get answered by my rheumatologist, that he would have all the answers. It’s a rare disease, and he would be the one with the all the answers. (We had met with a rheumatologist before my treatments, but he came off as unorganized and poor at time efficiency, so my lung doctor got us in with one that she liked and had worked with before).

For several weeks, I wrote down all my questions that I had, planning on asking this one doctor. Questions about my future, questions about what the hell is happening in my body right now, questions about when I can work towards my life again. So, when we finally met the guy last week it was more than a little overwhelming. All the emotions I’d kept bottled up, because I didn’t even know if mourning for myself was necessary, came spilling out. Not to mention I’m PMSing, so like, shit’s real emotional right now. The entire week leading up to the appointment, my carefully painted and grown out nails got all bitten off because of my anxiety of what he might say, and what my future could look like.

Unfortunately, my new doctor took my tears and fears as a sign of depression.

Here’s the thing. I’ve been depressed.
I spent many a day in high school feeling numb and unaffected by the world around me. Dark days that started with hating my reflection in the mirror as I got ready for school and ended with me heading straight to bed when I got home. I’ve got the diary entries to prove it, Jesus it was terrifying. Heck, my Depression is one of the reasons I read so much, it was an escape. And many of those traumatic days were triggered by health flares, so I am in no way trying to claim that my mental health is uninfluenced by my physiological health.

But I was not experiencing Depression last week. If anything, I was experiencing Release.

One thing my mother and I have both learned through the past couple months is how important our voices are when dealing with doctors. We should have picked up on it sooner probably, since we have dealt with so many, but for some reason we didn’t “Get It” till now. My mother pushing the doctors to do tests they thought were unnecessary is very likely the reason that they caught my GPA so quickly. My lack of trust in my first Ear Nose and Throat surgeon is the reason that we got a different one (I’m sorry ENT #1, but why would you wear a creepy smile while talking about cutting into my sinus passage??? Wtf). So with this in mind, I brought up my concerns with my new rheumatologist, that I was not Depressed. I tried to talk about the little projects I’d assigned myself like writing, or cleaning, or painting, or photography.

I’m not saying he ignored me, but he certainly wasn’t listening. And I love my mother, but her immediate agreement with him about the Depression certainly didn’t help my case either.

I’ve been thinking back on that appointment for days now. And I think what happened, was reality punched me in the face. For weeks, I had been spending my days in a fairy tale land. Where my only job is to stay home and indulge myself in my own creativity. It was days of nature documentaries, and decorating dream apartments on Sims, and planning a Go Green initiative for my family. With the exception of a couple spastic 5 second breakdowns over my morning coffee after having issues opening something, my illness wasn’t directly impacting what I was doing. I had restructured my routine so well that the amount of times I interacted with the disease was limited. I stayed bundled up in blankets in sweaters, which meant my lungs didn’t hurt. I washed out my sinuses regularly, so they didn’t hurt too much either. Even on hard days, when I felt I needed to just stay in bed, I only felt like I needed to stay in bed because my limbs were tired, so by staying bed and watching a movie or writing, I didn’t experience a high level of discomfort. It was almost as if nothing was wrong with me at all.

And then we jump forward to that doctor’s appointment and everything became reality.

When I had been “well” I was a public transportation user. So, I walked and bused almost exclusively. Bellevue has plenty of hills, not to mention I regularly wear heels, AND I was in ballet classes. In October, my calves were quite lovely. Not like, athlete lovely, but average civilian lovely. When he tested my leg strength, and I was forced to acknowledge that I wasn’t as strong anymore.
So, yea, there were tears and fears.

When I had been “well” I bought my first pair of pants that were a size 5. In fact, I bought three pairs of pants that were not size 0. After struggling with being underweight as a child, I, Raelee, had a butt. Not like, a Nicki Minaj butt, but a butt. Since I bought those pants I’ve lost 10 lbs., and my butt. When he asked about my appetite, I was forced to acknowledge that I hadn’t been eating as well and that my new pants didn’t fit so well.
So, yea, there were tears and fears.

When I had been “well” I had a semi-decent social life. Girlfriend and I went exploring in Seattle, or hiking with Dog, or study dates at Starbucks. In October, I went to a corn maze with a group of friends; I went shopping; I was in rehearsals for a show. Not like, a huge show, but a decent little script. When he asked if my pain was interfering with my life, and I was forced to acknowledge that I was scared to try to leave my house.

So… YAH!
There were plenty of tears and fears.

This past weekend, ever since he made his claim that I am Depressed, it’s like that part of my brain that’s so slightly miswired was like “Oh! We’re Depressed!? OKAY! We’re Depressed now.” The routine that I had worked so hard on pushing myself into, got shaken. I couldn’t write, I couldn’t draw. Girlfriend and I have been slowing working our way through Lost, and all I wanted to do was lie in bed and watch till my eyes bled.

I’ve spent the past couple days trying to talk myself back into being productive. On Saturday, I planned a party, and I’ve been pushing myself to make decorations. I even walked to the grocery store next door with Girlfriend for the first time in months. On Sunday, I missed an audition that I’d been really pumped for back in October, and I pushed myself to email the director to see if she wanted tech help so that I could still be a part of the project; as well as made plans with friends to help me with party preparations. On Monday, I made Girlfriend’s Valentine’s Day presents.

I’ve been trying to teach that so slightly miswired part of my brain, that while someone looking in on my life might think that I’m not being productive, only I get to decide what my Productive looks like. Trying to teach myself that if I can’t focus on one of my goals, to find an alternative way to have that goal, or push myself to work on my other goals. Depression comes back to haunt me when I get distracted from what I’m working towards, and very quickly it tries to derail me. Instead, I’ve been trying to work with it, instead of getting rid of it completely. Too numb to get out of bed Raelee? Fine, set a timer for 2 hours and read, then you can watch 2 episodes of [blank] but you have to doodle or play Solitare while you watch. Too numb to actually get dressed Raelee? Fine, but you have to brush your hair and wash your face.

So, Mr. Doctor, I understand that I have no medical education other than living through what I’ve lived through. But I do not consider myself Depressed until I let myself slack off.

And considering I haven’t slacked off since before my surgery at the end of December, I am not Depressed.

~Raelee

I should also mention that the appointment went fine otherwise, and I’ve possibly already gained some of my weight back. He and my lung doctor want me to start working towards my “normal” life and to try to leave more often, hence the grocery store walk. I’m still scared to be around other people, because like questions, and my immune system is suppressed, but I got a flu shot and I have hand sanitizer. I’m working on my plans for Spring quarter at school, and I think I’m going to try to get back to my actual job soon, but limit my shifts so that I’m not overdoing it. Other than the Depression thing, he was very calm and explanatory, and it’s sounding like my life may not be as derailed as I thought it would by my new friend, GPA.

If you are dealing with health issues, don’t forget that it is YOUR body. You get to decide what happens to it, and who is happening to your body. If you don’t like a doctor, and you have the means to find a different one, do it. I think I’ll write about my ENT doctor drama to give you a better picture, but I am so grateful that we got a second opinion and replaced her. But also if doctors are telling you one thing, and your body is telling you another, TELL THE DOCTOR, because you know your body better than anyone.

Monday Was A Hard Day

Some days are fucking hard. Today was a hard day. Not difficult, but hard. It wasn’t initially, but my fatigue snuck up on me. I woke up naturally around 9. Usually I wake up around 10. I decided to use what I’ve been learning from The Happiness Project and look at waking up early as an opportunity rather than a drawback.

I got out of bed quietly to not disturb the sleeping girlfriend and dog. I washed my face with cold water and turned the space heater off. I went to the kitchen to get a glass of green juice to take with my morning meds and see my 9-year-old sister at the dining room table playing Legos. I tell Sister I’ll come make breakfast in an hour or so. I go back to my room. I start reading the next chapter in The Happiness Project. I’ve avoided looking at my phone, a new habit I’m trying to pick up as a result of recent political events. So far I’m doing really good at not looking at Facebook before I’m actually awake.

By the time Girlfriend is getting ready to leave for school, I’m exhausted. It’s 11. Sister has not been fed yet. I tell her to cook herself a breakfast patty in the microwave; I’ll make lunch, just let me rest. Now I’m allowed to scroll through my social media feeds. I share the link for my newest post to spam my loved ones. I read an article on how to encourage myself to exercise (psh ok, try again in a month, Article).

The weekend went amazing. We worked on cleaning up our bathroom which had been neglected during all the doctor’s appointments and days spent in bed in pain. I started working on purging bathroom items. We washed our sheets and remade the bed. I got posts written and scheduled for the beginning of the week for when I’m more tired. I read for 2 hours. I remembered my medication. Sunday we cleaned up the kitchen; Girlfriend got laundry done and cleaned out our long overdue fireplace; we put all the Christmas decorations away and started cleaning up the communal areas. I made scrambled eggs and toast for the whole family; got more reading done; wrote some more; uploaded photos to National Geographic My Shot; checked emails; washed my hair. This weekend was full of good days.

But many of my days are like today.
Today the only reason I made it out of bed is because Sister needs a clean leotard for ballet at 4. I made it out of bed today is because Dog needs breakfast. Raelee need breakfast. I made it out of bed today because if I don’t get out of bed I will feel like crap later, and hate myself tomorrow.

To make it easier, I bargain with myself.
If you get out of bed, you can re-wear the fluffy socks from yesterday that are just right there on the floor. If you get out of bed you can watch Gossip Girl and play Sims all day, just not in bed. If you get out of bed, you can have tea in a cute mug. If you get out of bed, you can pee and eat, and then your stomach won’t hurt. If you get out of bed you can have a gold star.

Let me just take a minute to rant about something.

Able-bodied and/or neurotypical people (meaning people not dealing with long impacting structural and/or mental and/or physiological differences such as but not limiting to disability, anxiety, immune deficiency, etc.) cannot fully comprehend the struggle.
I’m not saying that to be a special snowflake, or to discredit their own struggles. I’m saying it because pretending otherwise is petty and a waste of time. It’s ok to not comprehend something you’ve never experienced, that’s a given; just don’t be a jerk about it. I’ve taken my share of mental health days, and I needed them. Sometimes it’s just really fucking difficult to pull yourself out of the sheets because it doesn’t seem worth it, life doesn’t seem worth it. The amount of skepticism that receives is astounding to me.

I’m not stuck in bed because it’s comfy, I’m stuck in bed because I feel like I’m not in control of my own emotions or my own body. Which leads to an internal dialog criticizing my own lack of ability, even though I know I can’t control it, but what if I can and I’m just being whiny? You get the picture. Its a banter, back and forth with myself, and its not fun. 0/10.

If that isn’t a relatable situation for someone, fine, that doesn’t mean that there isn’t this large group of people having mental battles with themselves everyday. I think honestly the biggest issue we have with trying to relate and understand each other is that we never bother trying in the first place. We are a society that is fast paced and full of quick decision-making. Taking the time to fully comprehend what someone is saying to us is not something we encourage and teach, not really. We reward fast choices, and as consequence, I think we condemn true patience.

The rest of the day goes a little better. I’m armored in dirty fluffy socks and a warm sweater. Instead of breakfast I made lunch, and worked on the blog for a little. After we eat, Sister and I work on purging and sorting through her room as part of our new family Living With Less initiative. I get her leotard clean and ready for ballet class, as well as a load of laundry. We work on her room for almost three hours, purge half a bag of trash, half a bag of things to recycle, and half a box of toys to give away. We only comb through a small portion of her room. But it’s a start, and we managed to do it with no fighting, sweat, or tears from either of us.

I Netflix and Tea till Girlfriend comes home. I’m done for the day. It’s only 4 o’clock. For a hard day, I got some things worked on. Not enough to be really proud of myself, but enough that I still got a gold star, so. That’s something.

~Raelee