Questions and Answers

Sometimes, I wonder why this is my life. Wonder isn’t the right word. What is the word? It’s this pleading for understanding. Crying when you’re alone and begging–genuine begging. For what? It feels like being in dark ocean water without a landmark to swim toward. I want to know the answer. Why? Why is this my life?

Some people ask “Why do bad things happen to good people? Why did this happen to me?” The emphasis here is on deserving, and the worth of the person in question. But that isn’t what I’m asking. I honestly don’t think I deserve better than I have. “Deserve” doesn’t come into it. It isn’t a moral issue. I have not seen evidence that the circumstances of our lives are influenced by our moral value. Actions have consequences, but you don’t get cancer because you are bad person. Just like you aren’t born into a conflict zone because of who you are. It happens. And it’s not about you.

My question, therefore, is why is my life this. Why is my life illness and headaches and isolation when the typical trajectory for a person like me is so different?

I think people forget that I was healthy, that I was normal. My body did all the typical things. It was right. All was good. If Newton’s law of motion applied to my potential, life was going to go a certain way. But an external force acted upon me, and stopped me in my projected path. It killed the person I thought I was, who I thought I would become. I want to know why that happened. But I don’t get to.

This is perhaps one of the hardest parts of life–accepting it. Without explanation. Without reason.

Once, sitting around a campfire eating apple pie, I asked a group of friends who aren’t afraid to think difficult thoughts whether they believed that all things–even illness and a disappointed life–work for good. I wanted to know, even if I don’t get to know why, does all this at least have a purpose for me? Their answers mostly echoed my own “I don’t know,” but someone added a thought that sticks with me: maybe good isn’t handed down as a gold sticker for suffering. Maybe good takes work.

People say that suffering builds character. It’s basically a requirement of television contests that contestants have had some sort of trauma to have triumphed over, that way the audience knows they’re rooting for a good person. In the Netflix show Kimmy Schmidt–if any show comes close to portraying what it’s like to leave the tower, this is it.–in the season one episode “Kimmy Goes on a Date,” Kimmy asks what I wonder about myself. She says “Do you think going through something like that makes you a better person? Or deep down, does it just make you bitter and angry?” She goes on to list all the ways in which she is not OK and her date, to who the question was addressed, begins to chastise the dog he imagines is under the table. (This is the last episode before Kimmy’s love life gets better than mine.) “Do I ever get to be normal again?” Kimmy asks, and I ask that right along with her. Kimmy doesn’t get an answer, but I think I know mine.

When I was really, truly, unbearably miserable my dad used to make a cross on my forehead with his thumb and tell me about his favorite saints who were sickly as kids but grew up to be great people. It helped me a lot in those roughest hours to make a correlation between the childhood condition and the people they became. It helped me to think that I was maybe one of them. It helped me to think my dad thought I was one of them. Eventually I realized that all of the people he told me about lived in times when childhood illness was a given, not an exception, and they grew up to be exceptional people but others dealt with the same circumstances and grew up to be bitter and angry.

Did I need to go through all of this to be made into something good? Yikes. I don’t know that I am better for what I have been through, or am currently living. How can I know? I was a pretty nice kid at 12, I think. Maybe a bit whiny, but certainly not a worse person than other 12 year olds. But am I worse for my illness and isolation? Honestly, maybe. I don’t know that either. I have a tendency to romanticize who I would have been, and in my head, she’s great. She probably volunteers more. She definitely donates more money because she has a full time job. I sometimes worry that isolation makes me self-centered, and I know that missing out on so much has made me jealous. I use humor to deflect the sting of bitterness that I sometimes can’t keep to myself. I don’t think that’s a sign of my superior wisdom and character.

So let’s suppose, like my friends from the campfire suggested, that good takes work. Maybe purpose and character are not given, but built. The last question I have then is what can I do with this? I don’t get to know why this is my life, or if it is good, or if I am better for it, but I can make something out of it. It might not be better than something I could have made if I were healthy–a full time lawyer can do a lot that a 20 hour a week paralegal just cannot, for example, so don’t argue with me–but it can be good.

 

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We’re all tired.

I sleep a lot. Around 9 hours a night. Except when I’m really tired; then it’s more like 11 hours. And I exist in a world where people say things like “Well, I got more than 4 hours last night so I’m feeling pretty good.” You can’t see my face right now, but imagine Jim Halpert, the character from The Office, staring directly into the camera as if he’s asking for confirmation that he’s not crazy and whatever just happened is insane. That’s how I feel.

I’ve always slept a lot. As a kid, I got a solid 10 hours if I went to bed at bedtime, which I usually did because I was a sweet little angel, obviously. But my relationship to sleep got complicated when I got sick. That’s a familiar story to anyone with a chronic illness, I’m sure. Suddenly, sleep didn’t make me feel better. I didn’t reboot overnight and wake up free from annoying glitches. I woke up after 12 hours feeling like a college kid who went out four nights in a row and hadn’t gotten 5 straight hours all week. I tried sleeping less for a while to test out the hypothesis that too much sleep was messing me up, but discovered that if I cut it short my muscles would ache all day like I’d started Cross Fit overnight.

So I slept, but I felt frustrated by it. I still feel frustrated by it. Why do I have to sleep so much? And why doesn’t it ever work? It’s frustrating to spend so much time on something that is necessary, but woefully ineffective.

When I hear things like “I stayed up til 4 working on that paper because I got too drunk the night before and blah blah blah blah,” I want to grab these undergrads by the shoulders and shake them like Adam Sandler did to that grade schooler in Billy Madison. “YOU DON’T HAVE TO FEEL MISERABLE ALL THE TIME. DON’T CHOOSE IT!” That’s what I would yell at them. Just scream it right into their faces. Because their bodies could actually feel good. And they wouldn’t even have to miss out on all that much to reach an effective balance that lets them sleep and study and go out. They could feel great. It’s possible for them. It’s not for me.

I’m trying so hard and sleeping so much and struggling to get myself out of bed this week. Not because I went out drinking, or stayed up late to write a paper. Just because my body can’t figure out what the hell it’s doing. Don’t get me wrong; it’s doing its best and I’m grateful for this body and its abilities and the fact that it tries So. Dang. Hard. But on weeks like this, when I sleep and sleep and sleep and everyday activities turn into Herculean tasks meant to test my fortitude, I get a little crabby. Maybe a smidge bitter. I get impatient with a culture that encourages healthy people to run themselves ragged and to complain every waking moment that they’re tired. They don’t have to be tired.

There are health fairs on campus every semester that try to encourage students to listen to their bodies and take care of themselves. They have meditation sessions and massages, and they give out resources and information on sleep hygiene. I already know all of that stuff. I know the tips and tricks and methods. I would be the most well-rested, self-caring healthy person, I’m telling you. I would take full advantage of being able to feel good. At least, that’s what I tell myself.

I guess I don’t really want healthy students to figure out they could feel amazing, like, all the time. Being tired is something we have in common. I should hold onto that. Solidarity is nice, even when they still don’t understand what it feels like to be can’t-get-out-of-bed tired for no discernible reason for so long you start to wonder if it’ll ever end. And even though I know that they’re saying “I’m so tired. Like, guys, so tired” right now, they’ll be out with their friends tonight or up until 4 am watching The Office and I’ll be in bed, because I’m so tired, like, it’s unreal, guys. I’m so tired.

If you’re a healthy college student reading this, please know that I don’t really want to scream in your face (well, kinda). You do a lot and you’re doing your best. Forgive me. I’m just jealous of your body. For my readers with chronic illnesses, do you feel the same? What goes through your head when you hear “I’m tired”? Tweet me @brightandweird

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.

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.

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.