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.

 

 

 

 

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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.

 

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.