Summer Time Fun with POTS

There is nothing quite like a Chicago summer.  My father likes to joke that Chicago’s a great place to live for one month of the year, and while the statement is not entirely without merit, I respectfully disagree. 

It’s true that Chicago has brutal winters.  Brutal may even be an understatement.  Sitting in my apartment right now, sweating a little with a nice breeze coming in through the screen door, it’s easy to say they’re not so bad; but I know better.  Come January, when I’m walking to the Division and Milwaukee el station with my face wrapped in two scarves and my fingers rendered useless in three pairs of lousy Walgreens gloves, I’ll again wonder why exactly I choose to live here.

But that’s what makes the summer in Chicago so great.  We all suffer through the winters, we all trudge through the gray, nasty snow that the cabs have churned into a disgusting black tipped mush, and we remember that in just a few short months the city will explode.  And that’s exactly what it does.  Come May or June Chicago opens up and becomes the best city in the country.  The chairs start to come out of the restaurants and cafes, bicycles start coming out of garages, and all of your sweatshirts and winter jackets go back to taking up space in the closet.  Suddenly you have the Cubs, the fireworks at Navy Pier, the parks, the lake, the weekly street festivals, parades, and the taste of Chicago celebration.  Suddenly you want to spend every minute outside.

And that’s what can make having POTS so frustrating.  In the winter, I’m almost happy to be laid up inside or forced to retire a bit early because my body is spent.  But in the summer I want to be out there, enjoying it all.  The heat tends to make symptoms a bit worse for the same reason that a hot shower does.  Everyone is actually familiar with the feeling.  Have you ever spent too much time in a hot tub or a sauna and started to feel weak, confused, and dizzy?  That’s because your blood vessels were all dilated and all of your blood was riding the gravity train to your feet, which means it wasn’t getting to your brain where it’s needed.  This makes your heart pump faster to compensate, which makes you feel like crap.  We’ve all experienced a bit of the sensation from time to time.  Now just imagine it much worse and every second of every day.  That’s POTS. 

But I’ve been trying my hardest not to let POTS run my life, and this summer I’ve been making a concentrated effort to get out and enjoy myself, regardless of how bad I feel.  It can be tough.  But now that I’m getting ready to be a father, I want to make sure that I’m a good role model, and as I’ve mentioned before, if I only teach my child one thing, it will be not to live your life afraid.  It is the worst thing in the world, and I know it first hand.  I’ve lived my entire life that way.  I blame it on being sick all of the time, and I do think that that’s a legitimate excuse to a certain extent; but in the end, we all have a choice.  We can hide from the things that challenge us or we can attack them right back.  I’m trying to do the latter because that’s what I want my kid to see.  I want this child to grow up seeing that when something difficult comes into your life you overcome it, period the end. 

To that end, I’ve been doing my best to get out there this summer.  I try to go lay in Wicker Park and write or read every sunny day when the ground isn’t wet and nasty.  I can handle laying down, so that’s actually a very doable thing, and it makes me feel like I’m engaged with my life.  Becky and I have had lunch by the fountain over there, and I got dizzy, but I bore down and dealt with it. 

I also went to the movies for the first time in a long time.  Sitting in one position for a long time can be tough because the blood starts to pool and I get dizzy.  Also, flashing images and lots of noise can cause some issues.  But it’s not fair to my wife to have to see every movie at home or with her friends.  She wants to go on dates with her husband and I want to take her.  So we went, and it was fun.  I had a great time with her, and I managed to make it through the movie.  Again, there were times where I felt bad, moments of dizziness, but I shifted in my seat, stayed calm, and got through them.

I also went to my first Cubs game last week.  I knew it was going to be extremely taxing because it’s more than just sitting or laying down.  Going to a game means standing up, sitting down, standing up, sitting down…over and over again.  There’s a ton of noise, a ton of commotion, and you’re out in the heat.  All of the things that can make POTS rough.  All week I was nervous and thinking of backing out of going.  I was worried about how my body would handle the game.  But I kept reminding myself that I had to fight my fear of POTS and live my life as I would without it.   There were modifications and concessions to the illness, but I was still going to do what I wanted to do.  And it was amazing.  The game was phenomenal, and I’m happy to say that I’m going back tomorrow! 

So far this summer, I’m doing pretty well with toughening up and getting out there.  I want to do more, be braver, be stronger.  I don’t want to be reckless or stupid, but I’m so tired of thinking of things I would like to do and then dreaming about the day when POTS will go away and I can.  Why can’t I just do them now?  There are people out there who do so much more with much more difficult situations. 

In the end, whether you have POTS or not, you never know what is going to happen when you leave your house.  The world is a scary place, and in many ways it is out to get you.  But is that any reason not to do something?  Learning that I was going to be a father caused an instant shift in the way I look at my life.  Suddenly I’m seeing everything I do in a new light, asking myself:  Would I want my son or daughter to repeat this?  What would they learn from seeing it?  I want my kids to see their father as a man who never, ever let something stand in the way of what he wanted.  You can either bend to the world or bend the world to you.  Which sounds better?  If I had to look my child in the face tomorrow and tell him or her what to do with a lousy situation, I would tell them to figure out a way around it.  And to teach them that, I have to show them that.

Since We Last Spoke…

My Good News

It has been a terribly long time since I have posted anything to this blog.  There are various reasons, but primarily my hesitation to post stems from the fact that I began this blog over a year ago as a way of spreading the word on Celiac Disease and describing what it is like to live with the disease.  I do still believe that this is an important mission, but I haven’t been able to give it my entire focus.

There was never a point (and never has been) when I thought that Celiac Disease was something all that terrible–big deal, gluten-free diet.  It is more of an inconvenience than anything.  The years of suffering that preceded diagnosis were terrible, but once I figured out what the problem was, the solution was not so disagreeable.  Do I wish that I could just go to the ice cream parlor and get a cone?  Yes, of course I do.  Do I wish that I could go to a bar and order a tall point of Guiness (excuse me while I drool)?  Yes, I do.  But the simple fact is that people in this world deal with a lot of terrible stuff and life has a way of putting you in check when you start to think that you have it bad.  I like to think that I’ve always been pretty good about seeing that.  From time to time I would grow annoyed with Celiac Disease, but I never had a poor me moment with it.  And I’m glad I didn’t, because when P.O.T.S. came along, it put things into perspective in a hurry.

If you don’t know what P.O.T.S. is, I’m sure I’ve described it on here at some point, but it is basically a failure of the autonomic nervous system that causes a rapid heart rate, severely low blood pressure, and other issues having to do with things like balance, adjustment to light and dark, etc.  It sucks.  There isn’t any getting around it.  I take almost twenty pills per day, and I still never feel good.  I realized the other day that I’ve completely forgotten what it is like to wake up in the morning and feel okay.  That said, I still don’t feel like I have it that bad.  I deal with P.O.T.S.  It is hard as hell to get myself on the train, up flights of stairs, and through three hours of class.   I very often feel like I’m going to pass out when I’m teaching my class and there are many, many moments throughout the day when I cannot do something that I want to do because my body just is not capable of it.  But there are still a lot of things that I can do, and there are a lot of people out there who are dealing with much, much worse problems.  For me, it boils down to the simple notion that if you are alive, you are having a good day.  Period.

And now to the point:  I don’t know what to write about on here anymore.  I feel as though writing about life with P.O.T.S. would be disingenuous given what people would expect from the blog title.  As I told my dad a few weeks ago, it’s hard to care much about Celiac Disease with P.O.T.S.  POTS (I’ll skip the periods because they’re a pain to type) makes CD seem like a walk in the park.  To sit down and write about our failed attempt to make gluten-free jelly donuts, hilarious as it was, just isn’t enough to sustain my interest, and if it doesn’t sustain my interest, how can I expect it to sustain yours?

There’s a lot on my plate right now, but it’s the same sort of ups and downs of life that everyone experiences.  Why would I expect anyone to care about that?  I can’t see myself writing about my personal life and day to day worries.  I’m not entirely happy with my career right now….Who is?  I’m about to become a father (check out the picture of my little guy or gal ), and I”m simultaneously excited and nervous…but lots of people are and this isn’t soon-to-be-daddy-Colby.  I guess what I’m trying to say is, I don’t know what to say.  To write little essays and pieces on the type of problems, concerns, and issues I have would turn this into a blog like any other, something I never wanted it to be…a sort of online diary, which, lord knows, the world does not need any more of.  And most of my readers were people with Celiac Disease, who I imagine wouldn’t care very much about all of that business.

It’s strange.  I feel very conflicted about this blog…about blogging in general.  On the one hand, I feel that I have something to say on a range of topics, and it is great fun to write and receive comments from people from all over the place.  To have written even one thing that another person could relate to was awesome, and I loved that feeling and I can see its purpose.  But on the other hand, I despise the emotional exhibitionism and narcissism of so much of the stuff we use the web for (facebook, myspace, etc.), and I enjoy being a reserved person, not airing my personal dirty laundry all over the internet.  There are millions of blogs, what could possibly make this one special?  Isn’t spending time writing blog entries just wasting time I could spend working on my new novel?

A year ago I had this crazy idea that I was going to quit the internet and live a life less tethered to the temporary distractions and pleasures of the web, television, etc.  I even considered using candles instead of lamps, just to see, just to reduce things further toward some simple place that I had idealized.  How insane is that?  I constantly have this romantic notion of filling a backpack with whatever I need and nothing more and just taking off with my wife to explore.  It drives me absolutely insane that my illness(es) prevent me from doing this.  Honestly, I think about it every, single day.  But lately I’ve been starting to wonder where that impulse comes from.  Why do I feel that way?  Impending fatherhood has me asking all kinds of questions of myself, and I could very, very easily write a blog about that with weekly entries all about my nerouses and worries and thoughts and feelings about it.  I think about my child entering this world and I start to wonder if I am the best role model that I can be.  I start to think about the habits and tics I have and whether or not I would want my son/daughter to pick them up.  What is this nomadic impulse and how is it going to affect my abilities as a father?  What will I teach my kids about all of this?  How is POTS going to change what I can and can’t do as a parent?  What about Celiac Disease?  Will my kids have these problems?

It’s funny…we have created a world filled with technologies and tools that were supposed to give us more free time and an easier, less stressful life; yet here we all are, running around faster and more directionless than ever before.  Life isn’t lived, an experience isn’t valid, unless it is posted to Twitter and all of our “friends” read about it.  If a picture of something doesn’t appear on your facebook page, it somehow doesn’t matter.  And look at me!  I just put a picture of my baby on my blog.  I’m part of it.  Do we all just spend our lives worrying that everyone else is more interesting than us now?  Are we compulsively sharing because we’re lonely?  What is it?

I just want to read books and write them.  And that’s the beautiful, perfect irony of it all.  I can dismiss blogs, myspace pages, facebook, twitter, all of it as much as I want….but the truth of the matter is that writers are the original purveyors of all of this.  What’s more narcissitic than writing a book, than thinking that your thoughts, stories, fictions, truths, philosophies, etc. are important enough to try to put out in the world?  Nothing.

A professor of mine once told me a story about a buddhist monk he knew.  He was complaining about someone one day and the monk handed him a mirror and walked away.  He sat with that mirror for a long time before he realized what the monk was trying to tell him.  His complaints about this other person were really complaints about himself.  That may seem absurd at first, but the more you think about it, the more truth there is to the notion.  And maybe that’s the ugly truth here.  Maybe my nausea and distaste for the exhibitionism of the internet is nothing more than a recognition of that impulse in myself.

…….what the hell am I even talking about?  I’m just trying to explain why I fled this blog a year ago, why I came back, and why I still can’t figure out if I want to keep it around or just get rid of it.  I just don’t know.  Maybe I’m just a little off my rocker and normal people don’t even think of this stuff.  I imagine that’s probably the case, and probably why some people have enjoyed reading this…we love to watch train wrecks.  I’m just in a very self-reflective place right now because in less than eight months I’m going to be followed around by a little sponge, and that little sponge is going to pick up the best and worst qualities I have.  Every single thing that this child knows about life will come, initially, from its mother and me.  I know that I won’t be perfect, but I also know that I want to be a lot better than I probably am right now.

You know what I want…I want my child to be brave.  More than anything in the world, I want this child to grow up to be brave.  I’ve been sick every day of my life…literally every day. I was born with crooked legs, and I’ve had medical problems ever since…and living as a sick person (whether it is a major or minor illness) causes you to see the world as a constant threat.  You learn to live in fear.  If I go out am I going to get a stomachache?  What if I get sick?  What if that has gluten in it?  What if my POTS acts up and I pass out?  It’s fear…and it is always there.  And I don’t want my child to live like that.  And to make sure that that doesn’t happen, I have to fix that in myself.  And that’s what all of this is.  All of this rambling…completely incoherent as it is…is just a way of getting down to that fundamental core.  And if you think about it, that’s what I’ve been writing about from the very beginning of this blog…it’s what all of my fiction is about…it’s what consumes my mind 24-7.  The harsh nature of the world and how we has human beings deal with that.  That’s my subject.  There it is.  And now I know that I’m not really trying to figure it out for me…I’m trying to figure it out for that little grape sized baby living in my wife’s womb.

……yikes…disaster of a post…my apologies…..I have no idea if I’ll write more or not.

The Monk Returns from the Woods

I stumbled across the blog while looking for something this evening, and I think I may stage a minor comeback.  It’s been almost a year since my last post.  Much has changed, and much has stayed the same.

More to come…

Over and Out

It’s been awhile since I’ve posted anything, and I apologize to any loyal readers out there who felt the gaping void in their lives. The last few weeks have been something of a whirlwind. I won’t go into details, but suffice it to say that the events pretty much line up with the general tone and fortune of the last six months as a whole. Health-wise, I’ve been continuing to see the P.O.T.S. specialist and we have upped my dosage of medication every time I’ve been in. My blood pressure is still pretty low and I’m still having a hard time doing a lot of things, but I’m much, much better than I was. I’m up to about fifteen pills a day now, which isn’t as bad as it sounds except for the fact that I don’t feel as good as I want to and feel I should after ingesting a handful of capsules. I’m starting to think I could just dump them in a bowl, pour some milk over them, and call the whole concoction breakfast. But the point is, I’m better than I was, and that’s all I can ask for or expect at this point. Do I still have a long, long way to go? Yeah, but I’m no longer stuck lying on the couch all day.

This summer is coming to a close. Becky’s running around the house, printing letters to students’ parents, color coding books, and taking daily trips to Staples for various classroom needs; and I’m printing out twenty page articles on pedagogical theory (don’t ask) and taking heavy doses of Kant (booooooooring) and Hegel (less so, but still enough to induce a narcoleptic fit) in preparation for my fall regimen of classes. Right now, my plan is to give this Ph.D. program a go. I don’t know how my body will hold up, but I have to try.

With the summer winding down, I’m feeling conflicted. On the one hand, I want to say good riddance and tell it not to let the door hit it in the you know what on its way out. But on the other hand, you never want to see the summer end and school start back up. Let’s just put it out there and be honest about it—this summer has sucked. Now, I hope all of you had a great summer, but mine was a turd. However, I’m trying to look at the things I was able to accomplish, the things that P.O.T.S. wasn’t able to rob me of. For example, I set a goal of reading War and Peace (for no particular reason) and I was able to accomplish that. I got to see our nephew Charlie and meet our niece Sophia after four months of being too sick to see her. And to top it all off, I used the time I was forced to spend on my butt to finish the first draft of my novel two and a half years after starting it. So it’s not a complete loss.

Going into this program, I’m not entirely sure about a lot of things. I’m not sure that it makes the most sense for my career. I’m not sure that it makes the most sense for my health. And I’m not sure that it makes the most sense for my own personal fulfillment. This illness has pushed me to the brink of my own sanity. Every day has been a struggle to find small victories, and I have had a lot of time to think—often too much time. I’ve gone to dark places in my own psyche and come out on the other end just fine, but I’ve learned and learned again how short our time is and that even if you’re fortunate enough to be alive, you’re not necessarily going to be able to physically do all of the things that your mind and soul may be screaming and yearning for. To waste time being unhappy when there is an alternative seems almost criminal to me now. I think back on all of the things I wasted my time doing when I was healthy and I get mad. I wish I’d played more softball, gone to the beach a little more often, gone to some more concerts—things I can’t really do now.

A lot of the time I find myself wondering whether or not I’m making the right decision by entering academia and pursuing a career as a scholar. I’ve worked in the field for about three years and I have to tell you that the politics, the back-biting, the pettiness, and the sense of superiority all makes me want to vomit. I hate the idea of having to publish x articles of literary criticism every year to hopefully (fingers crossed, pretty please Mr. or Mrs. Dean of College) get tenured, while your teaching doesn’t count for anything. I can’t stand jumping through hoops, having to prove to people that I’m intelligent or worthy of a place in the ivory tower. I don’t care about the two hundred millionth theory of teaching a freshman to write a thesis statement.

But….I do care about teaching. I do care about learning. There are benefits to it that I cannot deny, and let’s face it….What else am I going to do with a MA in Writing? There isn’t much out there for people with my skill set other than what I’m doing. Getting the summers off wouldn’t be too shabby either. Maybe you’re getting a sense of my confusion here. I go through this song and dance every single day. Every time an email comes in asking me to have this or that article read and annotated before classes commence I think, “Why am I doing this again?” It should be enough that I love to teach literature and writing and that I want to pursue my interests in an academic setting—that’s what it used to be, but that’s not what it is anymore.

The point I’m trying to make is that with all of this swirling about me, I sometimes feel like I’m a step away from a good old fashioned, Holden Caulfield-esque nervous breakdown. I’m a writer, we’re supposed to have a few screws loose. They call us eccentric when we do. I’m allowed. Aren’t I?

There have been days in the last few months when I flip open the computer and see a number next to my inbox and just don’t have what it takes to read the new emails. I turn on the television to watch Sportscenter and I don’t get two anchors talking about a score. I get two anchors on one side of the screen, some cheesy rock music playing behind their voices, a sidebar serving as some sort of inane table of contents (as if I can’t just watch and SEE what the next highlight will be), and, on top of all of this, a bar scrolling across the bottom of the screen telling me what Brett Favre had for breakfast and what kind of mood he woke up in.

I want to learn about the political candidates but all I get is, “His preacher said he doesn’t like cupcakes!” and “Oh my God! He gave his wife a modern high five! Terrorist!” The sad part is that this is better than what they usually cover—the mating habits of Brittany Spears and squirrels water skiing.

So I try to avoid it. I get my news from the newspaper (remember those), but it’s more of the same. I try different web sites, but I can’t stand the million links I have to sift through, and if I do find an article worth reading I’m forced to see a handful of comments by people who don’t want to hold an intelligent public discourse, preferring instead to snipe at one another from the anonymous comfort of the web. Maybe I’m already crazy. I don’t know. What I’m trying to say is that it’s all too much, and that none of it is good enough. Why do we insist on more, more, more and accept lesser quality? Why do I have to be forced to accept that just because it is the direction the mass media has chosen to go? To be fair, this is not a blog about politics or new-media studies; this is a blog about a sick man and his various diseases….but one of them is becoming a mental one and I’m explaining to you why I’m not going to be writing a blog anymore….or checking my email….or clicking on the internet at all.

I just can’t handle it anymore, and I’m going to conduct a personal experiment. Like people who take vows of silence, who vow to stop drinking, or stop smoking, or whatever other vows people make, I’m going to try to not use the internet for a while. I’m not going to put a definite time period on it, but it’ll be a long time. I understand completely that I’m going to lose a lot by doing this, but I’m okay with that. After all, people did survive before the internet existed. Some might argue they were a little nicer too.

When I was a kid, my Dad used to take us to the library once a week. I remember looking forward to that trip all week long. When we’d get to the library, my brother and I would take off down the aisles, sweeping up any book that looked interesting. I read about elephants and bald eagles, and I learned all about Ken Griffey Junior and Mickey Mantle. I read literature, and I read interesting, fun things—and I’m not talking about wikipedia entries. I want to get back that childhood wonder, that thirst for knowledge I had then. I don’t want to know a little bit about a lot of things, which is what the internet offers us….I want to explore the things I really, deeply care about in depth. I want to go to the library once a week again. When I have a question, I don’t want to jump to google and sort through BS to find the reliable source. I’ll just go to the library.

I sound like a psychotic, conservative, old man right now, and I realize this. I want everyone to know that I recognize that. I recognize that this is crazy and that it will probably backfire. But won’t you be happy when you open your mailbox and get a letter from me instead of an email? I understand that one man cannot, and should not, impede the tide of technology. I don’t want the internet to go away. I do want it to change, but I cannot and will not force my own beliefs on anyone. I just want the ability to bow out of it gracefully. The internet does a lot of great things, and I’m sure this is going to be really hard, but I have to do it for my own sanity.

So there it is. No more email. No more Google. No more espn.com at 1:00 am. If I want the scores, I’ll catch them in the morning paper. I want to welcome anyone and everyone to be on the receiving end of letters. I don’t want to lose family and friends because I’m a nut. So here’s what I’ll do: I don’t’ want to just post my home address on the internet for all to see; so if you’d like me to stay in touch with letters, or if you’d like to write me letters, shoot me an email (one last time), and either give me your address or I’ll give you mine. ccuppernull@gmail.com. A final, ironic, use of the darned thing.

Wish me luck with the Ph.D. program and the whole health thing. I’m still planning on getting better because I have a lot….a lot….that I want to do. I’ll talk to you all soon!

- C

Take Me Out to the Ball Game

First, I just want to say a quick thank you to everyone who has left comments on various posts. It’s very heartening to read all of your positive thought and encouragement, and I am extremely grateful.

The other night I was watching Sportscenter (as I am often of a mind to do) and saw one of the human interest stories they frequently run. The story was of a high school senior in rural Pennsylvania who was diagnosed with terminal cancer of the liver. This young man is dying, and if you saw the feature you’d know it just by looking at him. He is quite thin and pale and his voice trembles just noticeably enough when he talks. He’d been a mediocre athlete prior to his illness, participating in sports here and there, but the one thing he said he regretted was that he’d always been afraid of the baseball and it had made him a bad ball player. For those of you unfamiliar with baseball, a fear of getting beaned, plunked, or hit by a pitch is the worst thing a batter can bring into the box. First, you are guaranteed to get hit by a pitch at some point in your career—especially if you happened to face Colby “Throw it as hard as I can in the general vicinity of the plate” Cuppernull in a little league game between the years of 1990 and 1999. But more importantly, a batter’s job is to stick with the ball for as long as he can. It is the only way to get a hit. If you are already backing out of the box when the pitch is thrown, you aren’t focused on where the ball is going and making your contact with it. A good example is the story of the first curve ball I ever saw. A curve ball is a looping pitch that starts off in one place and ends up in another. I was up to bat and the much older pitcher wound up and threw. The ball was sailing right at my head, so I did what any sane person would do and ducked—low. Well, as soon as I was hunched over the ball arced back into the strike zone and dropped in for a perfect strike. As the catcher threw the ball back to the pitcher I noticed him laughing, and you can bet the very next pitch I saw was another curve ball.

Anyhow, this young man realized, having a football-sized tumor on his liver, that a pitch to the ribs isn’t exactly the worst thing in the world. What’s it going to do? Kill him? No. So his goal was to get back in the batter’s box for one at bat. So up he comes, at ninety-five pounds. He digs in his heels, stares down the pitcher, and takes the first fastball up the middle for a single.

As I was watching this story, I started to think about how often we see sports used as a metaphor for life, as an escape from it, and as an inspiration to overcome the challenges we face, notably illnesses. I started to wonder why that was? Beyond the obvious clichés we constantly hear, I mean. I’m not talking about the business meeting where the boss shouts out, “All right folks, fourth quarter here. Let’s dig in.” or “Ok, team, bottom of the ninth. Rally time.” No. I want to know what is at the heart of this tie.

Maybe it’s that in a game, there’s always a winner and a loser. As soon as the final buzzer goes off or the last out is made, the game is over and you know for a fact who won and who didn’t win. There are statistics that can tell us who did well and who did poorly. It’s finite. It is concrete, and life is anything but. How often in life do we know, for sure, who won and who lost? You can win in one area and lose in five others and vice versa. Or maybe it’s seeing the little guy rise up and take down Goliath. Maybe it’s seeing the Giants beat the Patriots or the Jets beat the Colts and feeling for a few hours like the little guy can win, because how often does the world actually make us feel like that? In a day and age when the top 1% of earners make more than the bottom 90% combined, maybe we need to see the underdog, the club with the lowest payroll, the nobodies win. Or maybe it’s just that when your team loses, there’s always the next game, and when the season’s over, there’s always next year. Life certainly isn’t like that. So how is sports like life?

Well we do have victories and defeats in life and they can be very real and very concrete. Getting POTS, having to stop working, being pinned at home sick all the time, having to postpone my wedding—all defeats. Finishing my novel, reading War and Peace, getting into a PhD program—all victories, right? Life is just more fluid and more nuanced. In a sport you have one aim and one aim only, score more points than the other team. In life you have a ton of goals, many targets, and some you hit and some you don’t. Some hit you.

Maybe the little guy doesn’t win as much in real life as he does in sports, but where would we be without the hope that he could? Isn’t that what we base our lives around? The idea that we can achieve something better, no matter who we are, if we just work harder, if we just dedicate ourselves.

Sports are a microcosm of life. We back teams and we love them like family. When they make us mad we can’t abandon them, no matter how much we may not like them, we still love them. We’re loyal to them, we fight about them, we cry when they suffer and when they’re victorious. Their victories feel like our own, and in defeat we feel their pain. Sports can take the greatest and most powerful feelings in life and distill them down into a three hour game. Fear, hope, joy, pain, sadness, all of it’s there.

But every now and then life steps back in and smacks us upside the head. It reminds us that it is a game without the benefit of rules. The good guys don’t always win. The harder working, better “coached” person doesn’t always succeed. Most of the time, when something goes wrong in a sport, when a loss happens, you can figure out why. “They didn’t take them seriously. They couldn’t hit the ball today.” But in life, we can’t. Bad things happen for no reason. There’s no umpire or line judge standing behind us to call balls and strikes, faults and double faults. We’re on our own. We try as hard as we can to figure out the rules but we can’t. We know that what goes up must come down and that the speed of light is blah blah blah, but we don’t know why babies get sick. We don’t know why the nice old lady on the corner goes out for milk and gets hit by a car. We don’t know why the jerk we work with keeps getting promoted even though karma should have struck him down years ago. So many of us believe that it all gets balanced in the end, in some final place. But while we’re here, while we’re in the thick of it, we’re constantly reminded that life just isn’t as simple as a baseball game or one at bat where you dig in and face your fear.

Maybe that’s why Sportscenter shows stories like the one I saw. Maybe they show them to remind us that while sports are fun and a nice rallying cry for all us, life is bigger, and three channels up some kid on the south side got shot on his way to school, a homeless shelter got robbed, and the executives at x or y corporation just gave themselves a huge bonus while their employees take pay cuts.

But that’s why we love sports so much. It’s not life. It’s close, but it’s not. Lance Armstrong can conquer cancer and go on to dominate his sport, reminding us all every time he won a race that you have to keep fighting because you just never know. This kid in Pennsylvania, who could crawl into a hole and die, gets in the box and essentially says, “Okay, chalk one up for life. But I’m not going to go out without taking something from it.” It’s the defiance we love. It’s looking certain loss in the face and refusing to just sit back and take it. That’s what I take from it. I still remember the night Aaron Boone hit his homerun to send the Yankees to the World Series (which they lost, leaving me in the fetal position for three days). I still remember my own first homerun. And one of my goals is to get well enough to play a softball game, maybe just with some friends in the park. And when I do I want to hit the living crap out of a homerun.

I guess the final irony is that so many people take sports so seriously and don’t do the same with life. We’ll watch every game our favorite team plays, and though we know there’s always the next game, we are shattered when our team loses. But how many things do we pass up in life, thinking that there’s always tomorrow? The difference is that in baseball, in football, in hockey, in tennis, etc. there is always the next game, and in life there is not. The hardest part of this for me is that I think of all the things I want to do and can’t right now, and I wish I had done them before I got sick. I hope I’ll get better, I think I’ll get better, I believe it, but I can’t know it. But I’ve got to run. The Cubs are down 8-2 to the Sox in 5^th and they’re mounting a comeback.

On Reading War and Peace

Two weeks ago I finished War and Peace. How interesting, right? Well stick with me, there’s a point to this. Two weeks ago I reached the last page and put down a book roughly the size (and weight) of a brick, which wasn’t a big deal. It’s not like I haven’t read long books before, and to be quite frank, I don’t find it altogether impressive that a person can (or does) read a long book. Reading War and Peace is not more impressive than reading five or so three to four hundred page novels. It’s not really more impressive than reading one. What I mean is that the act of reading the text, the simple gesture of picking it up and reading the first words, the last words, and all of the thousands of words in between is not impressive on its own. So why am I writing about reading this behemoth?

To understand why I’m writing about it, you have to understand what War and Peace is to a literary scholar and a writer, it is the holy grail of literature, the Everest, the white whale. Pick a cliché and that is what reading War and Peace is. It’s something we all know we should do but few of us actually undertake. It sits on our bookshelves, perpetually existing as “my next book.” For me, it represented years of procrastinating. It represented years of being a lousy student, a lazy student, even a lazy writer and scholar. Reading it was something I felt I had to do to prove to myself that I was capable of self-discipline. I suppose it hovered in front of me as some sort of validating exercise. If I could read War and Peace I could know that I wasn’t a complete lazy waste of brains. If I could finish it, I would have tangible proof that by being sick and unable to work and having to be home all day watching my dog bite the couch and hump his bed, I wasn’t completely wasting my life, watching my twenty-fourth year float by day by day while I sat aside and watched. I would have proof that POTS hadn’t beaten me and maybe, just maybe I would have hope that I could beat it. But by the time I closed it and picked up my next book (Macbeth if you’re interested followed thereafter by Cormac McCarthy’s The Orchard Keeper), I realized that I had been wrong.

This week we had to make the decision to postpone our wedding. With the original date now a little more than three months away, we could no longer get by just hoping that I would be better in time to get married, able to stand up long enough to take my vows and kiss the woman I love. The subject of postponement had come up before, and every time I had dismissed it outright. “No. Absolutely not. I will be better. I am going to be fine by October.” With every day that passed, bringing October 4^th closer and closer I knew that the likelihood of that being true was diminished. Every time something having to do with wedding planning came up, Becky got the same sad look in her eyes, and it became clear that what was supposed to be a stressful but happy time in our lives had become a worry, a sad reminder of what our lives have become as a result of an obscure, poorly understood, autonomic nervous system disorder that leaves me a shell of the man I actually am. I am trapped inside of a body that will not do what my brain wants it to do, and this week I had to admit that to myself and to my fiancée. I had to tell her, honestly, that I didn’t think I would be okay by October.

All along the worst feeling has been the sense that I’m letting her down. When I put that ring on her finger, it was with the promise to take care of her, to make her happy, and to always, always push to make sure that her dreams came true. It sounds corny, and it is corny, but it is true. When I proposed, when I asked her mother and her sisters if I could propose, it was with that promise, to make her happy.

Postponing the wedding felt, at first, like an admission of defeat. It felt like I was giving up, but there comes a point in every one of our lives, multiple points really, where we have to be able to step outside of our selves, put our egos and our desires aside, and look at things honestly and objectively. And looking at this situation honestly, there was only one decision that could be made. We had to postpone.

A wedding is supposed to be a happy event, and dammit I want to dance at my wedding. Granted, I’ll need about five glasses of wine before I’ll agree to do so, but the point is that I want to. And right now, standing up long enough to get a drink of water can wear me out. We knew that if we were going to make this call, we had to do it now before it was too late. We figured it was smarter to make the decision now and risk me being healthy than not make it and risk me being sick. And I hope I’m healthy on October 4^th. I hope we can walk the dog through the park and laugh about how we should be getting married. I really do. I hope I’m healthy tomorrow. But I can’t guarantee it.

So what does any of this have to do with War and Peace? It’s simple really. POTS is destroying me. It has taken from me the physical things I love to do, my ability to work, my physical well being, and now my wedding. It has completely and utterly destroyed my life as I knew it. But, and this is a big but, it cannot and will not take away everything from me, and reading War and Peace was my way of taking something back. It was my way of climbing some sort of mountain, gaining some sort of small victory. I saw reading that book as something that would symbolize the chip on my shoulder and my refusal to let this thing keep me from doing something.

But ultimately, reading War and Peace didn’t feel like that. It was a good book, and I’m glad I read it. But it didn’t change me or my situation. The next morning I still couldn’t walk around the block until I’d taken my five pills. I still had to lay down afterward. There were still points in the day where I got angry and a little depressed….but you try watching the Doctor Phil show or Judge Judy and not thinking that maybe, just maybe, there are some real scum buckets out there who might deserve something a little more than you….sorry. Where was I? Ah yes… we still had to postpone the wedding.

So I took out the laptop and did what I do every day now, I continued work on my novel, and I realized that I’m now ¾ of the way through it. I continued working with the Spanish textbook I bought online, and when Becky got home we talked a little en español. I checked a few things off of my list of goals. I did what I could.

I’m not going to pretend that I’m happy with my situation. I can’t write fluffy stuff all the time just so my mom doesn’t worry about my mental health. If you want to know the truth, this sucks. This sucks big time. I hate it. I get angry with it. I get frustrated. I get depressed. I lose my temper. I brood from time to time. But you don’t have to worry about me because the one thing I don’t do is let myself get lost in it. Every time I get stuck in one of the ruts I step back and look at it all objectively. It’s the hardest thing, in my opinion, for a human being to do. It’s the reason we have wars, arguments, racism, classism, any other ism. People don’t want to step back and look at things as objectively as they can, but it is, again in my humble opinion, the only way to achieve any form of release from the struggles life constantly throws at us.

Objectively, reading War and Peace is not much of an accomplishment. But subjectively…it was important to me in its own way.

Use the Force

Health Update: Where to begin? I guess I’ll just list all of things they’ve found wrong with me: Celiac Disease (duh), POTS (duh), Gilbert’s Syndrome (weird but safe high liver count), Reactive Hypoglycemia, Degenerative Disk in my neck. The latter two are the most recent discoveries. I’m now taking five different medications (one of them three times a day), which isn’t that bad, but they’re not working all that well. I certainly feel much better than I do without them, but I’m still just not where I need to be. I still get wiped out by the smallest things—washing the dishes leaves me needing to lay down and rest, walking to the Walgreens on the corner tires me out. But things seem to be at least moving upward now instead of downward. I’ve got about four months until the wedding and less than that until I’m supposed to start my Ph.D. program, so I’ve GOT to be better. I’m trying to exercise a little bit more every day, doing a bit more to get on my feet, but it’s tough. Hopefully, the progress continues…now on to the entry.

A long time ago in a galaxy not so far away I was born, just outside of a military base in Alabama, with crooked, gnarled up little monkey legs. My feet were twisted inward, and according to one family legend, a crazy German doctor wanted to break my legs and reset the bones (as opposed to having me wear leg braces and special shoes to correct the problem). My parents opted not to see him and thus kicked off my battle with my own health and the medical community. From day one I have had the same problems. My body screws up and then I see doctors who don’t know how to fix me.

To be fair, I don’t remember anything about my legs. I don’t remember the braces or the special shoes I had to sleep in every night. I was a baby. I see home videos from very early in my life, and there is certainly a detectable awkwardness in some of my walking, but other than that the only residual effect was nagging pain in my flat feet whenever I played sports. As a kid, my only health problems were undiagnosed Celiac Disease and an entirely unhealthy and just plain weird obsession with Star Wars (remember, during this time George Lucas had not yet ruined the entire Star Wars universe with the prequels).

It’s difficult to explain how Celiac Disease shaped my being a reader (and relentless Star Wars nerd), but anyone out there who lived with it for a long time without knowing what it was can tell you that you learn little tricks to deal with it all. My body was a ticking time bomb. I learned quickly not to eat anything for breakfast on days I had to go to school because eating always made me sick. I learned not to drink any water because that could trigger a day’s worth of stomach aches too. There were other things, for example some days I’d put my left shoe on first and I’d feel OK and so for the rest of the month I’d try to always put my left shoe on first. If I put my socks on before my pants and my stomach hurt, some idiotic part of my brain assumed a causal relationship and stopped doing that. It sounds crazy and it is, and the remnants of it are with me even today. It’s still hard for me to eat breakfast, even when I know it’s gluten free, because my subconscious assumes I will get sick.

My life was a series of inane rituals designed to minimize my suffering. My stomach hurt no matter what, at all times, all day, every day. My typical day involved shunning food until I was home and comfortable in the knowledge that anything requiring me to leave my house was done for the day. Long car rides were a nightmare, and, again, a part of me still subconsciously avoids them. I got it into my head as a kid that by distracting myself I could avoid stomachaches—that if I could just keep my mind occupied it wouldn’t happen. The doctors kept telling me it was my nerves, that I was making it up, that it was all happening as a result of some psychological problem, and so I had no choice but to fight it psychologically. So I read. All the time. I read on the bus to school, and when my stomach started to hurt I read harder. I read on the bus home. I read during lunch. I read during class, flipping ahead of where the class was just to keep my mind occupied. Every car trip no matter how long or short, I read. Every time there was somewhere I had to be I did my best to find something to read, and most of the time that was a Star Wars novel.

Now I’m not proud of the fact that I’ve read almost every Star Wars novel published between the years of 1977 and 1995, but I have. Let’s just put it out there. I was a huge nerd. I loved Star Wars; I was obsessed with it. I had to have anything and everything with the Star Wars logo on it. I had the novels, the comic books, the toys, the posters, every piece of idiotic, money-making, child-preying piece of merchandise they could come up with. I was convinced as a young nerd that if I read enough, knew enough, I could become a Jedi knight. I actually thought, hoped, believed that somewhere inside of me was the force, just waiting for me to tap into it. I would sit in my bedroom and try to move things with my mind. When my stomach hurt I would close my eyes and try to use the force to calm it.

I can’t even type this without laughing at myself, but it all makes perfect sense when I think about it. I attached to Star Wars because I needed something to offer me hope that there was a way to make my life better. I needed an escape, a fantasy, a different world to live on inside of myself. I needed to believe that I could have the force because I needed to believe that I could solve my problems. People kept telling me that my stomach problems were in my head, that they weren’t real, and I knew that they were.

Luke Skywalker was an orphan and a farmer on a desert planet who dreamed of a better life flying spaceships against the evil Empire. He was a kid who wanted to change his life, and when he discovered the force it was his gateway to doing so. Can I be blamed for connecting with that? I lived a life of constant fear and constant pain. I was sick every day. I was embarrassed by my sickness and as a young boy did not have the tools for dealing with it that I had in high school and college (namely a car and not going to school). I used to think about being a grown up a lot, and in all of my fantasies the central theme was that my stomachaches were gone. They were no more. I tried so hard to have the force. I did everything that Yoda said. I went to a quiet place, I shut off my mind, I concentrated. I tried to picture my stomach and to speak to it through the force, reason with it, connect with it, and control it.

When I started having the first symptoms of POTS a few months ago the doctors I saw all said the same thing, “There’s nothing wrong with you. It’s a mental thing.” Only later was it, once again, found to be a physical problem. I wonder what kind of sicko these doctors think I am. Why would I constantly try to destroy myself with illnesses? I have not lived a healthy day. Doesn’t it stand to reason that I would do the opposite, try to will myself to good health and happiness?

When the POTS started I felt again the pain of being completely unable to control my universe. I never became a Jedi Knight—not for lack of trying. I was never able to tap into the force, but something else did happen. I ended up becoming a writer. Getting sick has offered me a chance to step back and really look at how my illnesses over the years have shaped me and made me the person I am. The need to read, to occupy my mind, the need to escape my world and enter another, all made me a reader. Then I discovered that I could create my own worlds and that they were completely in my control, every aspect of them, every minor and major detail was what I willed it to be.

I have never written a fantasy novel or a science fiction story, and I highly, highly doubt that I ever will; but then again isn’t all fiction fantasy? If I just lower my expectations a little and blur the lines a bit, I can say that maybe I did become a master of the force. No, I can’t make the TV turn on, or get myself a drink with my mind. I can’t make people say something using a Jedi mind trick. I can’t do any of that in the real world, but I can make people say whatever I want them to, do whatever I want them to, bend the laws of physics if I so choose, when I am writing.

There is no question that the challenges we face shape us. It is an almost universal response of people who have been through anything major or minor that they wouldn’t change it. We have an ability to look back on something and understand that where we are now could not be if it weren’t for the road behind us. I ask myself all the time, If I could start life over without Celiac Disease (and presumably later one without POTS), would I? It’s hard to say no right now while I’m feeling so sick, but I don’t think I would. I think of all of the things I wouldn’t understand if I had never been sick. I wonder which personality traits would be lost or highlighted. Would I have been a better ballplayer? Maybe. Would I have been a writer? Maybe not.

I’m more frustrated with POTS than I ever was with Celiac Disease. I’m finding escapes in different things, and so far I haven’t tried to use the force to fix myself. I’m just trying to get through it and hoping that I can overcome it in the same way that I overcame Celiac Disease. All I can do right now is try to get healthy….wait…sorry. I can get healthy. After all, a wise little green man once said, “Do or do not, there is not try.”

What I’ve Learned

One of my favorite assignments to give my Composition students is to create a “What I’ve Learned” article.  Every month Esquire interviews some luminary of some kind and then strips away the questions, leaving only the bare essentials of their answers.  They’re always interesting to read, and it’s a great exercise.  I decided to do one myself, post-POTS, to see how much things have changed.  Here it is:

What I’ve Learned

My body is apparently suicidal but my brain isn’t. There’s no reasoning with it.

I never realized how lucky I was to have Celiac Disease until I got POTS. It makes Celiac Disease look like a Swedish massage. There’s no cure, treatment is marginally effective, and it is completely debilitating. The worst part is that they just don’t know anything about it. So asking questions like Why? What do I do? How do I fix myself? are useless. I’m up to about twelve pills a day now. They make me feel better for about ten minutes.

I wonder sometimes what kind of person I would be right now if I’d never had any of this. If I had never had to worry about my stomach, about eating, about when I’d get sick. Would I have been home reading as much? Would I have sat alone and thought as much as I did? Maybe and maybe not. It’s romantic to think that I’d have turned out much the same, but really I don’t think so. So in a funny way, I owe my whole personality to this disease and what it did to me.

POTS has taught me to live in the present and to not take a single second of feeling healthy for granted. I constantly feel light headed and weak so every lucid moment, every time I stand up and don’t feel like I’m going to pass out, is wonderful. It’s taught me to stop worry so much about tomorrow and focus on what you can do today.

It’s taught me that the world does not owe you anything. In fact, it is set up to destroy you. The human body is set up to break down. Danger is everywhere and you can get sick or get hit by a bus at any second. You have two choices: Spend life worrying about that or spend life taking the risk that waking up is. As I see it, waking up is a hell of a lot better than not waking up.

All of the best things in my life came when I stuck to my guns and held out for what I thought was right.

Every time you reach a low point, you just put one foot in front of the other. It’s nothing more than necessity.

I ask myself all the time, “What are you going to do? Kill yourself?” The answer keeps coming back no, and that’s all there is to it.

If the only healthy part of my existence right now can be my brain, I can’t make that unhealthy by being sad or pissy all the time.

My brain has been my salvation for my whole life, and now I’m having to rely on it more than ever. It’s never let me down and I hope it won’t now.

I’ve put myself out there on purpose because it forces me to be positive. If all I wrote about or talked about was how angry and disappointed I am then people wouldn’t want to be around me.

I try to be moving forward at all times. I always want to be getting closer to something. It’s important for me to have tons of goals, small ones and huge ones. I need to feel like I’m on a road to somewhere.

If there is a God, I’m going to have a lot of questions for him.

I don’t understand how people don’t see the similarities in all of the religions. It drives me crazy. I want to be political, I want to be involved in religious discussion and political talk, but it drives me nuts. It’s completely devoid of rationality or common sense and so much personal bias skews any hope of objective conversation that I always end up giving up…unfortunately, that’s usually not until I’ve said something to tick someone off.

Philosophically, and only philosophically, I’m drawn to Buddhism, but I draw the line too quickly with these things. I’ll meditate because I can see value in sitting and collecting myself, and living in the present, and so on, but I can’t do anything for hopes of results. I just don’t see any way that the universe would listen to me. I just don’t get that. Why would God, knowing how much so many other people are suffering, cure or not cure me? Why would he make this or that happen? It doesn’t make sense to me so I just let him/her/it/that/them be.

Honestly, is there anything more beautiful than life? Sometimes I’m walking outside and the color of the sky or a tree or a building will just take my breath away. We don’t stop nearly enough to look at things and be amazed by them.

People have been on the moon. Think about that. How does that not blow your mind? Tonight, go outside, find the moon, look at it for a minute, picture it in your mind’s eye floating in outer space, and then think of the fact that people have stepped foot on it.

Maybe Heaven is life. What could be better? Sure, there could be improvements—a nice cloud to sit on, all your loved ones, no work, no worries, all the nachos you could ever want—but when we conceive of Heaven the only thing that matters is continued existence. That’s all it really is. The perks aren’t the essence.

I think I might buy a lottery ticket because I’m due. Then I tell myself to stop being an idiot.

This is not fair and there is no reason that it happened to me. Dwell on it or accept it. It takes two seconds to decide when you put it in simple terms.

Sometimes I get mad when I see an episode of Cops or something where a person is ignorantly and willfully abusing their body with any of the various things we’ve developed to do so. I turn to Becky and say, “And I’m the one who gets sick?”

Jelly donuts. I would dive into a pool of them. Then pizza, Guinness, my grandmother’s chocolate chip cookies, potato chips, good cake. There’s lots of food I think about and miss. Jelly donuts. Man.

It’s kind of like being blind. Would you rather be born blind or develop it having seen the world? I’ve tasted foods that I can never, ever have again. I’d take it that way again.

I feel like I’m letting Becky down and that hurts me.

Every morning I wake up hoping I’ll feel OK when I stand up. One of these mornings I will.

Every person who is still alive can look in the mirror and tell themselves, “There’s nothing I’ve never gotten through.” Once you recognize that you just resign yourself to the fact that you’ll get through whatever’s up next.

When POTS goes away something else will happen. Hopefully this is the worst of it for awhile though.

Writing is my way of understanding the world. So much of what we experience is incomprehensible and we do what we can to make some semblance of sense of it. When something puzzles me it takes the form of a story and I get to my answer by writing it out.

There’s something in the creation of a story that is unlike any other satisfaction. You try to make the place and the people and what happens so real that when it’s done you feel like it has all really occurred.

Almost all of my stories start out as images in my head. I get a picture that looks like a painting and I try to see everything in it. It all tells a story. Once I see that picture I just try to fill it in with words, writing up to that moment and then trying to capture it as closely as I can.

There are no words that could ever accurately express the respect, admiration, and gratitude I have for my fiancée.

My motivation for everything I do and everything I ever will do is to give her the life she deserves and make her happy.

In many ways these illnesses have brought me closer to my family and my friends. It’s been surreal to sit back and see how my family has stepped up for me over the last few years. They are constantly looking for ways to help me and make my life easier.

Sometimes it can be frustrating to be reduced to “the guy with the weird food thing.” When I meet new people it’s all they want to talk about. “You can’t eat what? What about this?” Most of my conversations with anyone involve Celiac Disease in some way or another. But I understand that people ask about it because they care, and more importantly, every person who knows about it is a step in the right direction. I’ve accepted that it’s part of my personal mission to get this out there, and maybe someday I’ll be a part of a cure for it.

One foot in front of the other. Over and over again. Shut up and do it.

Saint Rebecca

I joke that I fell in love with Becky on our first date when she told me that she liked Shakespeare and Seinfeld. I almost asked her to marry me on the spot. The truth, I think, is that you don’t fall in love with a person in one moment. There are moments when it hits you, specific incidents you can look back on say, “That’s when I knew.” But maybe those moments are just the times when something you felt all along simply made itself apparent. The reality is that you fall in love with a person over time. I fell in love with Becky the first day we met, when she took off her headphones and introduced herself to me and I spent the rest of the morning trying to find reasons to talk to her. I fell in love with the way she carried herself, the grace she had, the maturity, strength of character, and security in her own self that I couldn’t have named at the time but combined to create in me the sense that this person was different. Special.

I fell in love with Becky every time I came into work on one of my days off just to see her, every time I sharpened my pencil at her desk during the day just to talk to her, and every time I volunteered for some extra project just to spend some more time with her in the hope that some opportunity to ask her out would present itself. (Believe me I tried!) I fell in love with her the night I skipped going home to watch a Yankees / Sox game to help out with a seminar. I helped her carry home some leftover food, and she gave me the boot immediately afterward.

Moment after moment, and I can look back on them all now and say that each of them pushed me a little closer to the realization, but the one that seems to stand out most now is the first night she cooked me dinner. It probably doesn’t seem like much, but you have to understand the context. Becky was the first woman I dated after I found out I had Celiac Disease, the first woman who had to deal with my dietary restrictions. You have to understand my relationship to food. It was my biggest fear, the bane of my existence. Every time I ate I got sick and so eating was something I did only when it was absolutely necessary and never, ever, ever, under any circumstances whatsoever on dates. I hated food because it forced me to live in fear, to exist constantly on the edge, wondering when I was going to get sick and how it was going to ruin my day this time.

So when Becky told me she wanted to cook me dinner my first reaction was a mild panic. I had no idea how this would go. I barely understood my diet and how to manage it and all of the possible ways I could get sick, relying on another person to cook me something seemed like playing Russian roulette. Who knows if the meal would somehow have Gluten in it? What would I say to her if it did? What would happen if I got sick? Would she understand? Would it hurt her feelings?

To this day I have trouble accepting that as long as I eat gluten-free I won’t get sick. I still subconsciously avoid food during important things. Before a long car ride or a trip to the airport I won’t eat for at least eight hours. Before family events I shun food and drink. If we’re going to the movies I don’t eat for a little while beforehand. These are all tricks leftover from the days before I knew, the days when I could get sick at any time. A sip of water in the morning could make me sick for the rest of the day. A potato chip could be the difference between going to class and staying home. For twenty-two years it was ingrained in me that if something important had to be done there was to be no food whatsoever put into my body. And what could be more important than a date?

I got to Becky’s apartment and she had a huge frying pan filled with yellow, delicious smelling Paella, and when she scooped it onto a plate and handed it to me I took my first bite in complete terror…all while trying to smile so she wouldn’t know. I ate it slowly, waiting the whole time for my stomach to start hurting and force me to make some lame excuse and head home. Food is such an important part of people’s lives and such an important part of dating. Just think about it for a minute. What would you do for a date if food were taken off of the table? Think of all the dates you’ve been on. How many of them involved food or drink? I’d be willing to bet that almost all of them did. Movies? Sure. You’ve got candy, popcorn, soda. Going to a ball game? Yep. I wanted so badly to just enjoy the food and enjoy her company, but I was terrified that at any moment I would start to feel sick, poisoned by a protein, a microscopic protein that my idiot body mistakenly reads as a violent offender. A protein. That’s it. That’s what has been ruining my life since the day I was born.

But the strangest thing happened. I didn’t get sick. I kept waiting for it to happen, but it didn’t. Becky had just moved in and didn’t have a table or chairs, so we sat on the floor and ate. We talked, and I waited and waited for my stomach to start hurting, but it didn’t. She told me how she had looked up Celiac Disease and been completely careful in preparing the meal. She’d washed the dishes beforehand, cleaned off the surfaces in the kitchen, checked and double checked every ingredient. I was amazed. She had gone to so much trouble for me, so much trouble just to understand what I needed.

I think that was the moment—they key moment. Sitting on the floor amid unpacked boxes, eating paella, I enjoyed, for the first time in my life, a meal. I could bore you with the details of how Becky has gone on to keep me Gluten-free, has learned to cook cakes, pancakes, bread, and all sorts of dinners just for me. I could tell you all about how she has given up a lot to be with me—the spontaneity of going to a restaurant for dinner, ordering a pizza, sharing a beer—but there is just too much to put down. The simple fact is that I fell in love with her over a plate of paella because she is the most considerate, kind, and caring person I’ve ever met. She takes care of me and she does it without ever complaining.

Things have gotten worse. POTS has robbed me of almost everything in the last four months. I can’t work. I can’t walk the dog. I can’t go to the bookstore. But the hardest part is not being able to take Becky out. There was already so little I could do, and now there is even less. She deserves it. She deserves walks to the park and trips to the coffee shop. I want to get better so that I can start my Ph.D., get back to work, get back to life. But really, I want to get better so that I can give this woman the life she deserves. I want to give her back all of the things she gives to me. I want to take care of her for once.

There are days and moments during every day when all of this gets to me. There are times when I sit and wonder how in the world my luck can be that bad. How I can have not one but two poorly understood and rare diseases. How I can have fought off Celiac Disease, lived with it, had it ruin my life for twenty-two years, only to be stricken down at twenty-four with another, harder, more debilitating disorder. I don’t react with sadness but with anger. And then Becky gets home or she calls me and I realize that I’m not unlucky in the least. I know it’s corny. I know it’s mushy. I know all of that, but I don’t care. I cannot possibly think that I am unlucky when that woman comes home to me and smiles at me and takes care of me. I cannot possibly be unlucky when I have the love of someone so special.

I don’t deserve Celiac Disease, and I don’t deserve POTS. But I don’t deserve her either. She is my inspiration to get better. She is my inspiration to solve this problem. Because I promised her the life she wants and I’m going to find a way to give it to her. Of all the things on my mind all day as I sit at home, weakened and tired by this disease, that is the foremost thought.

All the Tests in the World

Walking in the air still cold in spite of the impending summer and carrying a paper grocery bag with a broken handle and filled with eight liters of my own chilled urine, I could literally feel the blood moving from my chest and into my legs.  It felt like water running down my calves and pooling in my feet.  My legs began to feel light and vague, as if parts of another creature’s body bearing no relation to me yet carrying me forward as I moved toward the hospital.  I could feel my heart pounding inside of my chest. Sometimes when I get out of the shower I tilt my head back and watch the veins in my neck bouncing.  I can literally watch my chest quiver as my heart flies beneath what little muscle remains.  Maybe that’s the ten pounds I’ve lost (it was thirteen, but I gained three back).  Walking the mile to the hospital, making myself do it, forcing my noodled legs to move so that they could build strength, so that I wouldn’t feel so helpless and weak, so that I would feel like a capable human being, I felt what I feel every day.

Why was I carrying eight liters of my own urine?  I suppose that’s a reasonable question, and the answer is simple.  I was carrying twenty-four hours worth of my own urine back to the hospital because that is one of the few tests they had yet to run on me.   Your nervous system controls how well your body’s most basic functions work.  My nervous system does not.  So they wanted to see if anything showed up in that.  I handed the bag to the nurse at the desk and she was silent for a few moments looking at it in disbelief.

“This is twenty four hours?” she asked.

“More like twenty-two,” I smiled.

She just shook her head and hefted the bag.

This is my life right now.  Tests.  Tests and tests and more tests.  Tuesday I had a glucose test, which meant sitting at the hospital for six hours while they tested my blood pressue and heart rate (78/unreadable and 120 plus if you’re interested) while standing and proceeded to stab me every half an hour to take my blood.  I joked with the nurse drawing my blood that they’d better vouch for me if I get stopped by a cop on the way home because skinny guys with long hair and tattoos probably shouldn’t wander the streets (dizzy from loss of blood) with so many holes in their veins.  They took so much of my blood that two days later I still don’t feel well, which is a bit of a tough thing to discern considering what the phrase “feel well” has come to mean to me.

Tomorrow I have an MRI of my spine because one doctor thinks I may have a problem there.  Tomorrow I’ll get to answer the question of whether or not the MRI is worse than the glucose test.  Right now, the MRI is the worst test I’ve ever done, but the glucose test gave it a serious run.  All of that makes tomorrow’s new MRI kind of like game seven of the World Series.  It will determine once and for all which test is more of a pain.  (For the record, glucose test was more of an annoyance, MRI is just plain terrifying.)

I was born with crooked legs, twisted little twigs that had to be corrected by wearing braces and special shoes.  I spent the next twenty-two years wondering why I got sick every time I ate.  Now I can’t stand up without my body falling to pieces.  I joke sometimes with Becky that I haven’t had a single healthy day since I was born.  I tell my brother and sister that they owe me because I apparently used up all of the crappy genes from our parents.  I don’t think about all of this much.  I don’t sit around and wonder why I’m sick all of the time.  I wish that I wasn’t.  I wish that I could go get a beer with my friends without worry about gluten or passing out or my heart exploding in my chest or if talking would make me feel sick.  It doesn’t do any good to wonder why.  It’s bad luck, and as I’ve mentioned before, I don’t believe in luck or curses or any of that stuff. I think that luck is a descriptor and nothing more.  You stub your toe and that’s bad luck.  You win the lottery and you can describe it as good luck.  Luck exists in the same way that fun does, as an abstract description completely relative to every person and every situation.  POTS would be a stroke of good luck to a cancer patient, right?  What I don’t think that luck is, is a bank account with withdrawals and deposits.  I don’t believe that it’s something you have or don’t have.  There are people who only seem to have bad things happen to them and there are people who only seem to have good things happen to them and to my mind this is just a reflection of the random chaos of the universe.  God doesn’t hate me.  Why would he waste his time?

About now you’re wondering, “What is he on about?”  I don’t really know.  The other night I was watching Sportscenter and trying to simultaneously figure out why the Yankees stink so badly this year and what I could write about next, and I saw that one of the Red Sox pitcher’s had thrown a no hitter.  If you know me, or understand anything about sports, you’ll know how I felt.  I wanted to puke.  Then they started talking about the guy, and it turns out he survived lymphoma and came back to pitch.  Not only to pitch but to throw a no hitter.  This is hard for me to write, but that is heroic.  That is inspiring.  For a while there, I thought that I had lymphoma.  It was the only thing that could explain all of my symptoms and people with Celiac Disease are much more likely to develop lymphoma than your average Joe.  So watching this story, I felt a little kinship with a Red Sox player.  Who would have guessed?  I started thinking then about trials and how we face them.

It occurred to me that every single person faces something every day that tests their character.  My entire career as a writer is based on this.  Every short story can be reduced to placing a character in a situation that challenges them and tests their character.  Some people wilt and some people rise to the occasion.  We hear about it all the time on TV: Lance Armstrong, the Sox pitcher, the autistic kid who played in the basketball game, and so on and so on.  What we don’t hear about is the day to day struggle.  Maybe my struggle isn’t the same as cancer, I don’t think it is, but it’s a struggle.   I know that every day I have to wake up and tell myself: You can use this as an excuse, or you can use this as a reason.  I could stay in bed and watch TV.  I could stay in bed and do nothing.  Or, I can get up and try to go for a walk.  Try to walk a bit farther today than yesterday.  I can try to do the dishes.  I can try to write a new story.  I can try to walk the dog.  I can try to do every single thing I can during the day.  It is hard.  That’s what they don’t tell you.  Right now, typing this, I feel dizzy and weak.  I can feel my blood pressure going low on me.  I want to stop and lay down, but I dont’ want to let this stupid thing beat me like that.  I hate it every second of the day with every ounce of emotion I have.  I hate what it has robbed from me.

But here is where I have to find out what I am actually made of.  Boy does that sound corny, but you have to understand that that thought is what gets you through.  You have to say that to yourself like a mantra over and over again.  Beat it.  Beat it.  Beat this thing.  Fight it off.  Be strong.  Be strong for every person who reads this to see that you’re staying strong.  Be strong for Becky who is so strong for you.  Be strong for Mom and Dad.  Be strong for every person who cries when they call me.  Be strong for every person with Celiac Disease.  Beat it.

It is hard.  There are days when I am so angry at the world.  So angry at my body.  So angry at fate, God, luck, all the things I don’t even believe in!  But I have to just battle through and hope that there’s a no hitter at the end of this.  That there’s that moment where you’ve just done something, wrapped something special up, and you know, “I’m good now.” I think about that moment every day.  I try to envision what it will be like, biking to the beach, taking a road trip, getting married, hiking in Portland…maybe just going to The Red Lion and having a glass of wine with my friends.  I don’t know what it will be yet.  It will be a lot of things, I think.

So kudos to the Red Sox.  (That’s the last time you’ll ever hear that from me).  And Kudos to Jon Lester on his no-hitter.