25 is coming

In a few weeks, I’ll be 25. I’m trying to not be one of those people who freak out about this birthday because they’re already anticipating freaking out about 30, which is a premature over-reaction to 50, which is a reminder that someday you might turn 70 (and you hope you do, but a tiny part of you thinks “dang, that’s so old”), until you reach the root of your fears which is the realization that you’re going to die.

Happy birthday to me.

We take stock of our lives on our birthdays. Have we hit the milestones appropriate or expected for this age? What plans do we have for this new year on Earth? Was the last year a good one? Are we happy/fulfilled/successful/purposeful/stressed out of our minds?

I don’t feel like I’m mature enough to be 25. I’ve never paid for utilities. My favorite foods are still french toast and mac & cheese. I haven’t graduated yet. I literally would not survive without my parents’ support. I can do my own laundry and air up a flat tire, so that’s a point in my favor.

24 was one of the hardest and best years of my life. I hit a lot of unexpected, non-traditional milestones. But birthdays are weird for me because they not only mark another year of life, but they mark another year of chronic illness.

I wish they didn’t. I wish I could separate the two in my mind. I wish birthdays could just be a celebration of still being alive. But it’s the same with New Year’s and the anniversary of the infection that started it all. They’re marks on the calendar reminding me every year how far removed I am from HEALTH and that I may never get back to it again. If I was healthy, 25 would look different, and I would have to switch out a few things on that list of reasons I’m not mature enough.

When I hear people say things like “so grateful to be healthy #blessed” on their Instagram posts after a natural disaster or a story of a disabled person doing anything has made them feel guilty for complaining about their lives, I want to roll my eyes. But I shouldn’t. Because to them that’s the base level of gratitude for existence. Healthy is our humble, non-greedy desire. When you don’t want to ask for too much, you ask for health.

What do people say when they’re expecting and some asks what they hope the baby is? HEALTHY. They hope the baby is healthy. I hope the baby is healthy. We all hope the baby is healthy. But sometimes, many times, the baby isn’t healthy. Or it starts off healthy but it gets an infection and then it counts its birthdays in terms of years alive (25) and years sick (12.5).

So my dilemma on my birthday is that base level of gratitude. I do not have my health. As I write this, I am in bed debating whether the pain in my head is enough to warrant taking more medicine, or if I am capable of powering through because I don’t want to be loopy for an interview later. I have been at this for 12.5 years. 13 birthdays. Over half of my life. I am planning my future without the presence of HEALTH, but also with the bold gamble that I will continue to manage and maybe make some more slight (incredible) improvements.

On this birthday, I will not be healthy. If I am fortunate enough to get 45 more birthdays, I may not be healthy for any of those either. That’s life, kid. C’est la vie. I am still grateful for so much. My base level gratitude starts at breathing. I am breathing. I am here. I am living and that’s kind of amazing in itself. So cheers to 25 years of breathing. I’m grateful for all of them.

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About Today

Sometimes I wake up with pain in my face and forehead like my skull is contracting. The running joke in my family is that an alien life-form in gestating in my brain and I’m experiencing Braxton Hicks contractions. It’ll pass. (Until the day the infant alien bursts forth.) Anyway, I woke up to false alien baby labor this morning.

The best thing to do on days like this is to stay in bed and watch some tv. Maybe take a shower or a bath at some point, since water always feels good. But no pressure. Just take it easy. Give my poor head a break because it’s clearly going through something.

I don’t do what is best, though, because I am determined. I force myself out of bed. I make to do lists–multiple lists of things I have to get done today–or else. Never mind that I can barely get through writing the list. I stare into space trying to think of the word for those little sticks with the soft ends that clean your ears…what are those things? I know I know this. What’s the….?

When I look down at my phone it’s been fifteen minutes, I’ve written three items, and I have no idea what those stupid cardboard fluffy sticks are called but I know I need to buy some of them. The two other items on my list are read everything on each syllabus for my classes and write every paper due this semester. Not really, but it might as well be that unnecessarily ambitious.

Going to the store like this is a bad idea. I’ve done it before. I survived. But it’s not a pleasant experience. I am Dory and I can’t remember that important thing. I make a plan in my head; go to toiletries, then grocery, then leave. But I forget it as soon as I’m in amongst the people and noise and choices. So many choices. Why are there four different kinds of sticks with cottony stuff? That’s too many. And my skull starts to constrict in a wave of pain and I don’t care about Q-tips. Ah, Q-tips! They’re called Q-tips. Anyway, I don’t want Q-tips. I don’t want to be in the store. I want to go home and climb into bed. Why am I out of bed anyway? Whose idiotic idea was this?

“Do you need any help?” a shelf stocker asks me, which is unusual because the staff in this store are not particularly helpful generally. But the stocker seems amused by me. That’s when I realize I have been in this aisle for twenty minutes. Twenty minutes looking at Q-tips. So I left the store without buying anything.

My bookbag in the front seat reminds me that I’m supposed to get stuff done today, but it’s not going to happen. I know that now. My determination is broken. So I drive home mad. I’m mad at myself for not being able to pick between four kinds of Q-tips. Or finish a simple to-do list. Or work on an actually important assignment. Or write a blog post about having a chronic illness.

I’m mad at myself for not being able to manage better, even though this is the only one day and I’ve gone a couple weeks without wasting an entire day in bed. I’m mad that any day is wasted. I’m trying to make up time here! I have to use every day. I have to finish to-do lists.

But by the time I get into bed, I’m too exhausted and my pillows are too comfy for me to be mad anymore. I’m pretty sure the alien baby has changed positions because now my skull is threatening to split open at my temple. So I can’t think about a paper or write a post or remember to eat today.

Tomorrow I won’t be mad at myself for today. I’ll be a little frustrated by the additional work I have to do. And embarrassed about that whole Q-tip fiasco. But I won’t be mad. Because a bad day is a bad day. I’ve been through bad weeks and bad months and bad years. I came out the other side of a bad decade.

Bad days are days I don’t get back. That’s true and it sucks. Nothing gets done (except parts of this blog post). I don’t see my friends or make new connections. Occasionally I miss deadlines and the type A side of me dies a thousand deaths in agony. But mostly the world goes round and I binge an entire series on Netflix (only actually watching some of the episodes because the light from laptop screens is refracted evil). And right now, in a moment of rational clarity, I know bad days are not my fault. I can’t control them. I avoid my triggers, but they’ll happen anyway. So what’s the point of being mad at me? It’s just mean. I’m trying my best here.

I know I won’t remember this revelation the next time I wake up feeling like my cranium is being squeezed from the outside while stretching on the inside. I’ll worry I’m going to waste a whole day again. I’ll convince myself that everything needs to be done and it has to be done today. So next time, all I have to do is read this post, try not to roll my eyes–which will hurt like hell–and surrender. It’s just one day.

Sweating Through It: Talking about Chronic Illness with Someone New

The worst thing about making new friends is explaining my life. It starts early with simple questions like “How many classes are you taking?” I can see the confusion when my answers don’t line up with expectations. Subconsciously, my potential friend has a vision of me already formed–not the specifics, but a general outline. And in that general outline, I am healthy. I hate the moment that vision goes away. I hate that I have to explain it away.

“Wait. So like, what do you do? I mean, if you’re only part time and you don’t work?”

I don’t know how to answer that question. Still. After dozens of attempts, I’m not sure I’ve ever answered in a way that makes any sense. Probably because I still don’t know what I do with my time. Rest? Stare into space? Worry about answering that question? Eventually, I give them the whole run-down, the “chronic fatigue syndrome/life story” starter conversation. Sick at 12. Bunch of doctors. Tutors at home. Not enough research. No treatment. No cure. Yada yada. That whole spiel.

Honestly, I still sweat through that first conversation. I try to treat it as nonchalantly as I can. I’m simply relaying information because someone asked a question. But it doesn’t feel that easy. And I worry that it’s heavy. I feel like they asked about the weather outside and I told them about the worst storm in local history–surprising, confusing, and unnecessarily depressing.  It’s difficult to tell when to get into the details and when to just smile and let them wonder.

Yesterday, I stopped a few of my fellow students outside the football stadium to ask them questions about tailgating for a piece in the yearbook. Coincidentally, two of those students were from small towns near mine, and wanted to chat about the local community college and who I knew from high school. Except I don’t know people from high school. Because I, you know, didn’t go. Maybe I should just say I was home-schooled; it’s less confusing and doesn’t generally invite follow-up questions. But I’m do this thing with my life where I try to be honest, to the best of my ability. So I make things awkward with strangers on principle.

“Wait. What does that mean, you didn’t go to high school?”

“Uh, well, do you want my whole life story? That was the simple answer.”

“Yeah, give us your life story, because the simple answer is confusing.”

So I didn’t give them the whole scripted explanation, but I told them I got sick. Somehow that always feels personal. It’s an event in my life. I was born. I did things. I went places. I got sick. It shouldn’t be hard to say. It shouldn’t feel like a secret. I’m not confessing. But I sweat like I’m confessing when I say “I have chronic fatigue syndrome.”

I fear dismissive reactions. It’s disheartening to have to convince someone that my condition is actually a big deal. I’m scared that people don’t think it is. I’m scared they suspect I’m just weak. That fear will make you sweat. But most people don’t react that way. Most people are nice and try to understand. So why am I ashamed? Why do I feel like I’m admitting a personal failing?

I don’t want to let go of that vision a potential friend might have of me, the general outline in which I am healthy. I like that image. It’s not even mine, but I don’t want to change it. I want to seem that way for as long as possible. I want to be that for real. But I’m not that. And if I want to have conversations in which I talk about my life, I have to talk about being sick. It touches every part of my life. It is my life.

That first conversation may always be an anxious occasion for me. I may never be comfortable ripping a hole through a person’s outline assumptions of a healthy me. But that first conversation is only one, and in my experience, it’s usually not the last one. The next conversation–when my potential friend (or maybe actual friend, at this point) feels comfortable enough to ask me questions, to get to know what my life is really like–is usually better. And the ones after that–when they get your dark jokes and know your migraine triggers almost as well as you do–are sometimes, maybe even mostly, good. You won’t know who is capable of those good conversations unless you wade through that first one.

The best part about making new friends is obviously the people themselves. And I want more people. People who can get it, if I explain it a little bit first, are ones I want around. So I keep having that first conversation, even with strangers I’m just trying to interview for the yearbook. Maybe the more I do it, the easier it will be. Hopefully, someday it won’t feel like a confession, but more like a statement of fact or even revealing something fascinating about me. Until then, I’ll sweat through it.

Look, Ma! I’m published.

Look, Ma! I’m published.

My first post, Out of the Tower, was featured on The Mighty, a website dedicated to sharing stories of disability, disease, and mental illness. That piece was swirling around inside me for a long time before it came together. I think it was piecing itself together as I tried to not cry at stop signs this past year. It means a lot to have this opportunity to share how I feel, especially because it’s not easy to admit that getting better isn’t the answer to all of your problems.

It’s great to know that it actually wasn’t bullshit when I wrote that everyone has their towers. People I haven’t heard from in years got in touch to tell me they might not get my circumstances, but they definitely understand the feelings. New friends shared their own stories of breaking free from towers of isolation. I am so grateful for their responses. Grateful in ways I don’t know how to explain. Humbling ways. Ways that make me want cry a little bit, even though generally I really dislike crying; it somehow feels like it might be good to grateful cry? I don’t know. I’ll probably hate it. I’ll give it a try and let you know.

The point is, though, that I made the right call getting super personal on the internet. Who knew? That’s not going to be true in all cases at all times, but it is true that you should share your story. Maybe with someone face to face. Maybe with the internet. I don’t know what will work for you. I didn’t know this would work for me, but I risked it and it did. Risk it.

Check out the other stories on The Mighty–they have a whole category just for CFS/ME, but there is great stuff in all of the categories. And if you want to, check out my piece again. I’ll be grateful that you did!

Out of the Tower: The Difficulty of Feeling Better

Eleven years is a long time. Especially in the space between twelve and twenty-three. I spent those years mostly alone in my living room, doing school work from the couch and forming alarmingly deep attachments to TV shows. You see, when I was twelve I got an infection, and thanks to some genetic stuff and a faulty immune system, I couldn’t recover. I developed Chronic Fatigue Syndrome. Everything made me tired. I’d turn gray and then red and then gray again walking around the block. School was impossible.  So at twelve and three quarters, my decade long stint as a fairy-tale princess locked in a tower began.

We all have towers–things that lock us in and keep us away from what we want, from what’s outside, from life. For some of us, that tower is anxiety or depression, or limited mobility. For some of us, the tower is an inconvenience. For others–for me–the tower is everything.

Of course, at twelve or thirteen, I didn’t know I was in a tower, and I certainly didn’t know I’d be there so long. I remember hitting the two year mark and thinking, “Dang. That’s a long time to be sick.” What a sweet, little idiot. But I tried to make the most of my time in the living room. I read a lot. I wrote a lot. I finished 7th through 12th grades with one hour of tutoring a day and no actual math teachers. (It shows.) I day-dreamed about what I would be like when I got better and I had enough energy to get dressed every morning and leave the house. I wanted to be a Marine, study at Oxford, become a doctor and join Doctors without Borders, and have thirteen children. Classic over-compensation. I made a list of things I wanted to do by the time I was twenty-one. But eventually I gave up on those dreams and that list. Eventually, I realized that my tower might be permanent.

Senior year of high school, the year I subconsciously thought would free me from my tower, came and went and I was still sick on the couch. That’s when I got real with myself. “You are not Rapunzel. This is not a tower. You are sick. This is your life. This is it.” Seems harsh, but it did help a bit. I started thinking in terms of permanent disability. It was liberating in one way. I wasn’t waiting for my hypothetical life anymore. That life outside the tower, my day-dream healthy life, was not a possibility. Life is not a fairy-tale. I am not a TV character. So I needed to plan accordingly. And I did. And I tried to be happy about it.

But something very  fairy-tale happened around the new year 2015. I got into the college of my (more attainable) dreams as a 23 year old junior. I got to live away from home–leave the living room!–thanks to some incredibly generous friends. It was my eleventh year of chronic illness and I had learned to manage enough to go to a university.

I was drained at first, but then, slowly and even more plot-twisty, I realized I didn’t feel like I needed to sink into bed for 16 hours after one hour of class. I didn’t feel like I was moving through waist high water when I walked. I didn’t feel like I was wearing a weighted suit.

I felt…better.

You have to understand what that meant for me. After ten years of always feeling the same and a year of feeling a little bit worse than the same, I FELT BETTER. I could walk around the block. I could run half the block.

I was Rapunzel coming out of her tower. And it was amazing. And it was awful.

Now that I felt a little bit better, all that acceptance I had worked so hard to pretend I had was history. I wanted more. I was two years late on my 21 by 21 list and it was burning a bitter hole through my notebook. But I had no idea what I was doing. How do people live outside of living rooms and TV? How does one “go out” when one still technically spends fourteen hours a day in bed and that’s a vast improvement? How does making friends work?

I felt like Brendan Fraser’s character in Blast from the Past, only less charming and without an Alicia Silverstone to guide me. I burst into tears at a stop sign once because I overheard the girls crossing the street chatting about their plans for the evening. They had purpose and places to be and people to see. And I counted going to two classes in the same day as an accomplishment.

So I felt better but also a lot worse. For the first time, I genuinely hated my life. I was insecure about myself. Disappointment and frustration overshadowed the happiness I always thought I would feel. I knew how to exist in the tower; I knew how to day-dream. I didn’t know how to be in the real world. I didn’t know how to be normal.

Rapunzel would be so weird when she stepped out of that tower, guys. So weird. And the world would be overwhelming. She would need an adjustment period. And probably some therapy, because being stuck in a tower is an awful thing. Even fairy-tale characters don’t come out of that normal.

When I talk to someone else about their tower, the thing that cuts them off and keeps them apart from normal, I don’t walk away from them thinking, “Damn. I can’t handle that weird.” I see them differently. I see their weird. But it’s like they stand out more. I can see them better. And I can see me better and my weird doesn’t feel so bad and my tower doesn’t feel so tall. Our towers get smaller when we talk about them. That’s why I’m writing this.

It’s more than a year since my symptoms of Chronic Fatigue Syndrome started to improve. I’m still weird. I still feel frustrated. I’m still not as charming as Brendan Fraser and I don’t think I ever will be. But even though I’m not normal, and I’m not all the way healthy, and I’m on my sixth year of undergrad, and I’m still figuring out ways to get out of the house, and I still sleep ten hours most nights…my tower keeps getting smaller.

I am not Rapunzel. I am me and I feel better. I walk for fun. I run for fun. I have plans tomorrow evening. I may have finished my 21 by 21 list but I don’t know because I lost it because I don’t need a list. I don’t need to be normal. I still don’t know what I’m doing, but that’s ok. I’m (mostly) out of the tower and I’m living my outside of normal life.