Why People Don’t Care About CFS

Several times this year I have attempted to bring awareness to the patient activist political push to get CFS/ME research funding to my family and friends through my Facebook account. Each time I fretted over my word choice, and anxiously watched the engagement after I posted. Because I know that the people in my life don’t exactly care that much.

If they’re reading this they’re already protesting that that isn’t true and of course they do and they love me and yada yada yada. Of course they love me. Of course they care about me.

But they don’t care about chronic fatigue syndrome, not really. I know this. Because no one has ever asked me about current research. No one has ever asked me if there is anywhere that I donate that they could look into contributing to funding. No one has ever asked me what color ribbon or what month or what day or what anything is used for CFS awareness.

People are not engaging with chronic fatigue syndrome the way they engage with cancer, diabetes, ALS, AIDS, and other conditions that are brought up frequently, either in proportion to their effect on the population or more so. Chronic fatigue syndrome is not rare; between one to four million Americans alone are thought to have it, according to the CDC. It is not a low-impact condition; by definition it has to effect a sufferer for 6 or more months. In light of the facts of the condition, it does not make sense that chronic fatigue syndrome gets almost no real research funding, and is not regarded as a disease on par with those listed above in public thought.  

It doesn’t make sense that my family and friends don’t care about research funding.

I’m not mad at anyone. There are many factors that cause this apathy towards the condition. But I am worried that if people don’t care about chronic fatigue syndrome nothing will change, even with the hard work of patient activist groups lobbying for research funding. And if nothing changes, there is no hope.

Arguably the most important factor to creating a sense of urgency toward curing CFS is for the patients themselves to broadcast the reality of the condition. I have mentioned in a previous post that I contribute to the diminishing of my own condition on a regular basis. If I am not forthcoming about the severity of chronic fatigue syndrome, how can I expect the people around me to equate it with what they consider suffering? Every time I say I am OK when I am not OK, I make it harder for my loved ones to understand that it is a matter of hope for life for me and a million (or several million) others when they sign a petition for dedicated federal research funding.

Sufferers of CFS may be more likely than the general population to die by suicide, a fact I learned only this summer when my Facebook newsfeed started to fill with memorial posts to patient activists who recently died. Hope is essential. Research is hope.

I understand that I am part of the problem–I am trying to be more honest, because this is not just about me. I don’t want to read another in memoriam while people think chronic fatigue syndrome is simply an inconvenient part of my life.   

Another important factor is one I cannot control, a cultural narrative that details how sickness is supposed to go. It goes like this: you get sick, you fight it with treatments, you get better or you die. That’s how it goes. If you don’t fit in there, then the world doesn’t really know what to do with you. When do they bring the casseroles? If you don’t go bald or use a wheelchair, or have an outward signal of your struggle, how do they know you’re really fighting? CFS does not fit the narrative of illness so it can feel uncomfortable. People can be uncertain about how to engage with it, and the people who live with it, so they ignore it.

There is no easy solution to this problem. I have to ask that my family and friends try. I have to ask that the family and friends of those with CFS and other conditions that don’t fit the mold try harder. Risk not doing the right thing, or a socially unacceptable thing, and do something. This is uncharted territory, my friends, because no one has bothered to set forth rules for caring for chronically ill loved ones before. (They used to lock them away or just let them die. We don’t have to do that anymore. Donate to research.)

Cancer has something that CFS doesn’t have in that everyone I have ever met is afraid of getting cancer and no one I have ever met has expressed any fear of getting CFS. I understand the fear of cancer. I do not understand the lack of fear of CFS. I used to take it personally when I was younger, like people thought I was weak and that is why I was sick and they weren’t. Now I know it’s because people are irrational and silly (no offense). People are scared of cancer because they hear about it more, but if they’re going to live in fear they should live in fear of CFS, too, because it can happen to anyone. While it is diagnosed mostly in women, it crosses all demographics and occurs all over the world. The causes are vague and treatments non-existent. Have I mentioned the little research funding?

The truth is I don’t know why people don’t care about chronic fatigue syndrome. And I don’t know how to make them care. My sincere concern, the worry in the pit of my stomach, is for the 12 year old girls who this year, or last year, or next year, are going to get sick and never get better. They are going to live through what I’ve been through and it won’t be any better for them. It should be better for them. We have the power to make it better for them, if we care.

What can we do to make CFS more visible? How can I help you (family/friends) understand or engage with CFS? Tweet me your thoughts @brightandweird

Migraine Triggers

Migraine triggers are fun because they can be almost anything and aside from lists of common ones, there is no way to determine what a person’s are besides paying close attention to what happens at the onset of a migraine (which could be seconds before the pain or days before because migraines are crafty, evil monsters). A migraine trigger is exactly what the name implies–something that triggers a migraine. It is important to discover what triggers your migraines if you have them so that you can avoid that thing, or potentially destroy that thing for all of eternity and live in peace.

But discovering triggers is difficult. It took me two years. Two years of pain so bad I would lay on the bathroom floor every afternoon so that I could listen to my family talk while they cooked. Then I would go upstairs in my room with all the lights out and curl up in a ball under my covers until my mom brought me dinner.

I don’t remember when it dawned on me that the smells from dinner cooking hurt. Or that when I bit into garlic toast my head felt like it was going to split open. I don’t know when it occurred to me that it was onion and garlic that triggered my migraines, but once I did it took me forever to realize that all forms of onion and garlic caused me pain: fresh, cooked, powdered, way down the ingredient list, included under the vague umbrella of “natural flavors.”

For the longest time, I tried to convince myself  that ketchup and ranch dressing were OK. They are not. Immediate pain. I once ate goldfish out of my nephew’s snack bag because, like, a tiny amount of garlic powder is not the end of the world, ok? Instant migraine. Pretty sure I threw up later that day. Definitely was not a helpful babysitter for my sister.

Anyway, this trigger is an angry, take-no-prisoners kind of trigger (I don’t know if there are ones that aren’t that kind…) and it makes itself known everywhere in all kinds of food. When my family cooks they know (mostly) what to look out for and makes things that are safe for me to eat/smell. I generally don’t have to go outside, or smother my face in a blanket on the other side of the house. I avoid restaurants and foods that I don’t know. I like to try new places, so I use online menus to determine if/what I can eat there before I go. 

People always ask me about this. Isn’t it hard to go to restaurants? Doesn’t that make eating socially difficult? The answer is “yes, it does. Thank you for noticing.”

Last week, I went to a Korean restaurant with some girls I don’t know very well. I wasn’t planning on eating because, well, it was a Korean restaurant and I figured they wouldn’t have anything I could eat. But the thing about people is they eat socially. It’s like a bonding experience or something, so you’re not really allowed to just sit around while other people eat. They get suspicious of your presence. So there was a round of questions about whether I was going to eat, then a round of insisting that I should eat, then a round of suggesting that I ask the cooks what I could eat.

I went up to ask.
“I promise I’m not trying to make your life difficult.”
“Haha, ok”
“But I can’t eat garlic or onion. Is there anything here I can eat?”
“Yeah, the number 16.” Well, that was easy. Too easy. There’s definitely something wrong with the number 16.
“There’s no onion or garlic in that?”
“No, just vegetables and beef and a sauce.”
“What’s in the sauce?”
“Ooooh, uh, I don’t know. Probably garlic.”
Yeah, ok. Now we’re talking.

The other employees come over and we had a conference of three Korean restaurant staff, me, and the three girls I came with trying to decide if literally anything was safe for me to eat. And ultimately, no, nothing was. They did offer to make me rice, but I’m not a fan of plain rice so I bought a drink, thanked them for being impressively kind, and sat down feeling awkward in my weird body and my bright red face.

But being awkward and feeling weird is preferable to a migraine so I still count that as a win. Plus, they all tried so hard. That was a group of six people, three complete strangers, bound and determined to bend the laws of my existence so that they could feed me. They felt bad, as if somehow they were failing me, and it was the sweetest thing.

My friends, on the other hand, order pizza and eat it in front of me without a second thought. Sometimes they even order the garlic buttery crust and I have to leave because it smells too strongly. I would say I need better friends, but hey, I can’t deny people the appeal of garlic buttery crust. Even I want some–just, ya know, not really.

 

Happy Thanksgiving! I’m Probably Lying.

 

Small talk is the worst.  Not just for people with chronic illness–really for anyone who doesn’t fit expectations–but certainly for us. Simple questions lead to awkwardly personal explanations, and everyone involved is praying for a way, any way please God help, out of the conversation. And here comes the dreaded small talk season: holiday parties.

I have mentioned before on this blog that I try to be honest, but I tend to throw that rule out the window while speeding down the highway at 90 miles an hour during the holiday season. Because I actually enjoy the holidays. I love going to my family holiday gatherings and catching up with my aunts, uncles, and cousins. The last thing I want to be during this time is honest.

This is how that exchange would go:

Family Member- Hi, oh, you look so great! How are you?

Me- Thank you! I’m miserable. My energy is at a 12 year peak but I have migraines and other pain so often I still just lay around most of the time. I literally don’t have time for a life because I’m busy laying in bed feeling like shit. How are you?

Family Member- Oh my…that’s so awful. I had no idea. Are you ok? Is there anything they can do? Have you tried [insert therapy here]?

And it would devolve from there. Because they would feel like I am confiding in them, when really I am simply telling them the day to day of my life. It’s uncomfortable that answering the question “How are you?” honestly might be mistaken as revealing too much when I’m not even trying to open the flood gates. My everyday existence shouldn’t be a secret, but it kind of is.

Don’t get me wrong, I want the people in my life to know what chronic fatigue syndrome is actually like. I want them to know what I’m up against. I want them to care when I share fundraising and awareness campaigns on social media and they don’t so much as of right now…so maybe I need to be more honest. But I don’t want to have that conversation ten times in one day. And  I want to hear about them. I want to discuss Stranger Things. I want make dumb jokes and laugh and reminisce. I want to be happy.

I haven’t figured out how to not lie and still feel OK in these conversations. The truth is pretty complicated. I could send them here. “Please see my blog for the most up-to-date and honest look at how I’m doing.” But that seems a little off-putting. Plus, who wants to read? So I do what I suspect most other people (sick or not) are probably doing and straight up lie.

I think the reason lying about how I feel bothers me is because chronic fatigue syndrome does not get the automatic recognition that a condition this debilitating should. Thanks to incredible work of organizations like Millions Missing and the upcoming documentary Canary in the Coal Mine by Jennifer Brea–who is a warrior. For real. She may be the reason that people now comprehend me when I say “I have chronic fatigue syndrome.” She gets shit done. No excuses.–CFS isn’t as unknown as it was when I was first diagnosed. No one knew what it was then. My doctors didn’t know what it was. They read it out of a book and said that’s probably what you have because, yeah, it’s not this other stuff. A lot of people didn’t think it was real.

Now my friends forward me Buzzfeed listicles about it.

But part of me is scared that every time I lie about how I’m feeling, I’m diminishing the work of the #millionsmissing warriors. Or proving doctors who told me to shake it off and get back to school right. Or justifying the nonchalance of people who know that I suffer when I ask for their help.

So I lie because I want to enjoy the interaction in the moment, but I feel the weight of all the lies over all the years together as a pattern contributing to my own sense of belittling. Which is pretty messed up. So I don’t want to lie. But I also want to get through Thanksgiving feeling OK about myself, and that’s hard to do no matter who/where/what you are, let alone if you have to repeatedly admit out loud that your life is basically laying in bed and crying because your head hurts and you wish you could go outside and see the people.

This blog is one attempt to right the wrongs of all my lies. (Although I’m not always completely honest on here either…I don’t know who is reading this.) Here I can put down what I’m going through without feeling like I am wasting time with someone I like on things I don’t want to talk about. I can take my time and think about how to describe what it feels like. I can pick a movie reference that fits. Ya know, the important stuff.

Small talk isn’t always the place for honest answers about how I’m doing. Ethical philosophers might argue differently–heck, part of me argues differently, too–but it doesn’t work, not comfortably. So the conversation with a cousin or aunt could go something like this:

Family member- How are you?

Me- I’m doing alright. Energy’s good. Pain could be better. How are you?

And the conversation moves on and eventually we get to Stranger Things and gush about Gaten Matarazzo and Millie Bobby Brown over pieces of black bean brownies. It’s by degrees honest and evasive. It’s not a flat out lie, so that’s a check mark in the good column.

If you’re  wondering why I can say all of this here, but am struggling with the idea of small talk: I can be honest here because I’m not trying to gauge how much you actually want an answer to that worst of all polite questions: “how are you?” I can be honest because I’m not answering a question at all. I’m just telling you.

 

 

 

 

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.

 

Baseball and Bad Ideas

Baseball and Bad Ideas

The Cubs are in the World Series. This is a time for extraordinary feats, for crying manly tears, for breaking curses. Real life is pretty much an inspirational sports movie right about now.

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Because of this, because emotions are high, because the atmosphere in Illinois is practically sizzling with long over-due satisfaction, I am going to do the unthinkable. I am going to join the crowds outside Wrigley Field this weekend. I am going to walk long distances, stand for hours, be cold, maybe drink something stronger than a Cherry Sprite, and I am going to ride that adrenaline like it’s a mechanical bull and I am a drunk guy trying to prove myself.

About an hour after I called my dad and asked if he’d like to stand with me outside Wrigley while our favorite team in all the world played in the World Series, I started to think maybe that is a stupid idea. It was 7 pm on a day when I hadn’t done much of anything, but I was already in bed, exhausted and having a hard time focusing on an essay that I needed to write. I finally decided to put it away until the morning because I was clearly over-done. I don’t go out, I thought, even on regular nights, because it’s too exhausting and the recovery time isn’t worth it. This will be like 20 times worse.

And then I thought, to get to Chicago on Friday I will have to make the 2 hour drive home from school after my classes–that always wears me out. I’ll have to take medicine for the migraine that will form during the drive, like usual. And then I will have to get in another car to make another drive which will probably take longer, because everyone in the world will be migrating to Clark and Addison.

That thing called “post-extertional malaise“–that thing that makes me disproportionately more tired with everything I do–is real and terrifying. It’s mean. It is an old-school school teacher waiting with a wooden ruler to slap my knuckles every time I mess up. And sometimes when I don’t, just for fun. But it’s worse than that, too, because if I make it really mad, it can mess up my life. Exhaustion can start as a snowball and turn into an avalanche. But so far, I’ve bounced back well enough.

I’ve stayed up all night before. I worked an entire 10 day movie shoot from 4 pm to 6 am this summer. But I did sleep from 6 am to 4 pm…and I cheated and napped a bunch of times. And I slept a solid 48 hours afterwards. I won’t be able to sleep all day before staying up all night this weekend–I’ll have to power through. And I won’t have time to recover afterwards. I have to get right back to school and be able to function in my classes.

What shoes should I wear? This is a serious question because if my feet hurt, or if they’re slightly too heavy, or if I am in anyway noticeably uncomfortable, I’ll feel disproportionately worse and my recovery time will multiply. I need to be warm enough and light enough and comfortable enough that I only have to deal with the physical ramifications of walking too far and standing too long and staying up way too late.

Should I exercise this week? I feel better overall when I move around and stretch out, but it can make me excessively tired if I’m not in the perfect condition to handle it. So I’ll skip that for now. If I do too much or in anyway wear myself out before Friday, the snowball of exhaustion will get too big to stop and cascade down the mountain side until it crushes a sweet Swiss village with it’s icy fury. (Or something less dramatic.)

So I sat in my bed, too tired to motivate myself to change out of my jeans or take out my contacts, and worried that I was having a moment that is best described with a line from a movie–a “you think you can do these things but you just can’t, Nemo” moment. These are moments when I over-reach, when I am fully convinced that I can do something that even a little bit of thought would reveal to be absolutely beyond my capability.

But this year I have done so many things that I shouldn’t have been able to do. Like that movie shoot, for instance. That was not at all a smart decision. If I hadn’t gotten the amount of sleep I did, or if it had lasted one day longer, or if I had pushed myself to stand up more, or if the boxes I carried had been heavier, or if the wind blew a little harder–if anything had been a little more difficult, I could have jeopardized my overall health permanently.

Oddly, thankfully, I was feeling more Nemo than Marlin when I made my summer plans. Because the experience was unforgettable. I’ve never been in a World Series crowd before (for obvious reasons) but I imagine that will be pretty unforgettable, too. So I’m going to plan my clothes, and my nap times, and my activities for the rest of the week, and a hundred thousand tiny decisions around this one night.

Maybe my legs will hurt. Maybe my head will pound. Maybe I will sit down in the middle of the cold street and cry. Maybe my heart will do that thing that it does when I’ve hit my breaking point–it feels like it falls over inside my chest cavity. I don’t know what that’s about. Whatever. The point is: maybe I shouldn’t be able to do this, but maybe anything is possible. Maybe I’ll feel fine.

The Cubs just won the pennant, so I’ve got to try.

(If my dad decides he doesn’t want to go, please disregard all inspirational feelings. Thank you.)

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.