Chronic Fatigue Syndrome – Page 10

California Problems.

Published on May 15, 2012May 28, 2012 by Mary Gelpi8 Comments

I’ve been trying to put my finger on what makes California so…well, I guess I’m still trying to put my finger on it, so I’ll begin with a photo. The other day I was driving my sisters Gun-metal Grey Prius–which starts by pushing a button and appears to run off rubber bands–when I took a left turn and saw “THE HILL” to my right. I will randomly pass THE HILL while battling car sickness from the backseat or talking on my cell phone so I’ve never been able to capture a photo of it. But this time, I was all alone. I wasn’t on my cell phone, and we all know I don’t have a real job so I have ample time to pull over and sneak through bushes to take pictures of things that I find noteworthy. THE HILL seems to embody almost everything I feel about California so we’ll begin there. Alas, I introduce to you: THE HILL.

Does this song pop in your head? Little boxes..on the hillside..little BOXES MADE OF TICKY TACKY! Me too.

Here it is close-up.

There are a few things about the photo that effectively sum up some general truths about California. Let’s start with number 1. The weather is basically perfect here. While there is a term called “June Gloom” which refers to a cloudy, overcast weather pattern occurring mostly in late Spring, it’s pretty much paradise the rest of the time, with a dusty cloud now and then and the average annual temperature right at 75.4 degrees. I’ve heard people complain that they miss not having four seasons here, which I get. I happen to love rain and we all know how much girls love sweater weather. However, there’s something to be said for never having to shovel a driveway or scrape away ice off your windshield with a credit card. (I lived in Colorado for 10 years; snapped one license and one library card in half.) It’s also comforting to know that if the air conditioner breaks in your car, you’ll survive. You’ll thrive even. Whereas if this scenario were to occur in New Orleans, not only would you literally vomit and die of heat exhaustion, you’d most likely be in a really shitty mood for the last few moments of your life. Having been here a few weeks, I’ve encountered the June gloom a couple of days; it’s tolerable. And it doesn’t last. The real problem is attire. It’s not quite cold enough to wear a real jacket but it’s too cool for short sleeves. These are called California problems, and they’re not real problems. You stock your closet full of every color cardigan, and you bring one with you wherever you go. It’s called cardigan weather people. You’ll get used to it.

Now let’s talk about outer beauty. A place that feels this good must look like trash, yes? It couldn’t have it all could it? Hahaha. The first time I stepped off of the plane in Orange County, I felt like I was in Never Never Land. A rainbow cast its arc over the airport and that song “I’m Walkin’ On Sunshine, Whoa-Oh, and Don’t It Feel Good?!” was playing on repeat from what must have been underground speakers placed strategically around OC. I remember thinking how beautiful the Ritz Carlton looked as we drove by and then noticing at the last second that it was actually a Walgreens. I couldn’t believe it. I kept rubbing my eyes and pinching myself. If this was all real, why in God’s name would you live anywhere else? “Holy shit. Is that a Burger King?” I asked, pointing to a beautiful stucco building with neon lights and palm trees out in front of the entrance. “The palm trees aren’t indigenous,” my sister reminded me. Which is kind of like showing a dude your boobs and then saying “They’re implants. Is that OK?” Sometimes it’s so nice I wonder if things like hangovers even exist here. It’s like this place was a movie set built in the 80’s that they never tore down and people just kept moving here so they said Ah screw it, we’ll just make this a town.

Speaking of Walgreens, (you know I gots to talk about Walgreens) let’s talk about overly conversational vendors. When you walk into the Walgreens on St. Charles avenue in New Orleans, you pass the same dude asking for money for food out front. It’s now understood that when you give the guy money, he’s going to buy drugs, not food. (I know because he didn’t accept food when I offered it. Cash only baby!) So I give the dude a buck or two, which I’m told only perpetuates the problem and I ought to be ashamed of myself but it’s what feels right so I do it anyway and enter Walgreens to get drugs of my own. Once inside, I’m lucky if I can find someone working there. There’s usually an obnoxiously long line with the clerk mysteriously nowhere to be found and a fire alarm going off in the back, which seems to alarm no one. In Orange County, you walk into Walgreens and are immediately greeted by a smiling vendor and asked if you need help finding anything today. “Uh, I’m fine, thank you.” But I say this with a little bit of scepticism because why are these people being so nice? Do they work on commission? As I get distracted by the “As Seen on TV” aisle and am considering whether or not I should buy Pajama Jeans, I see the same blue vested employee in my peripheral. “Find everything you’re looking for?” “Oh, uh..yeah, yes. Yes, thank you.” I’m nervous because I’m not used to being approached by smiling Walgreens employees and I’m wondering if he’s about to go postal up in here. “What are you up to today?” he asks and I feel like it’s a trick so I mutter something about living on my sisters couch and cautiously make my way over to the Indigestion aisle and look for the bottle of Pepto Bismol that is most economical. I peek around a shelf of “Snuggies” and see the blue-vested employee asking an old woman about her family and is ushering her slowly to the diabetic aisle. I thought the Walgreens commercial said “Perfect” didn’t exist? I pinch myself and get out of there fast.

What about topography? Well let’s see. You have the ocean on one side, the dessert on the other, hilly landscapes in-between and the outline of mountains in the distance. This means you can effectively surf, snowboard, rock-climb and camp all in one weekend. It’s like it’s never heard of the phrase Do one thing and do it well. California’s like Hey, Let’s Do Everything, and Let’s Do it All Perfectly.

There are a few questions I have about California which I have yet to find the answer to. For one thing, where are all the poor people? Like, is it illegal here? Something tells me that dude that I give money to outside the Walgreens on St. Charles Avenue wouldn’t linger here for long. But I don’t exactly know why. It’s like there’s no problems here! Or there’s no appearance of them anyway. Did you know they have scented dog shit bags here? I’ve also never seen a natural piece of litter here. One of the only dirty things I’ve seen since arriving is this:

This is my brother-in-law next to a pool at a bank-owned foreclosed home that he and my sister were being shown by their realtor. (Note the June gloom in the background) But surprise, there were one too many problems with it. So far, it’s the only real glimpse of dirt or grime I’ve encountered. So once again, I took a picture. Here are some more photos of California I’ve taken.

Surfer — The Waves Are Droppin Off At The Wedge Bro!

My Stupid Friend Jess, Trying and Failing To Fit In In SoCal

Most people are willing to tolerate general sameness, (the same weather, the same houses, the same freaking nice people) for the payoff of perfect in virtually every other category. But there’s also this grade school mentality I feel sometimes that I’m too much of a mess to fit in here. Like I’m under-dressed for a party, or that feeling you get when you’re peeing in a bathroom and you know people in the outside room can hear you. It’s hard to explain, but there’s something about “perfect” that’s rough to compete with. Something that makes you feel more spectator than participator. When My Stupid Friend Jess and I were on my brother-in-laws boat and we had just literally played in a pod of dolphins, we were laughing at how amazing everything about California is. Our conclusion was this: There’s nothing left to contemplate in California. It’s perfect here.

Health, Happiness, SoCal.

I Know I Know. Don’t Freak Out.

Published on May 8, 2012May 8, 2012 by Mary Gelpi25 Comments

You’re in the right place. This is still the blog about fibro, pills, humor and attempted awesomeness. I gave the blog a little makeover and I’ve been putting it off for a while now, but the time has come my people. First, I shortened the address from 25pillsday.wordpress.com to just 25pillsaday.com so we can all breathe easier knowing we have 9 less characters to type. Also as someone who’s 5.3 feet proud, I always argue that shorter is better. Secondly, all the crap that used to be at the bottom of the page is now easily accessible at the top. See? Right over there. >>>>>>>>> And that old picture of all those drugs that were the colors of library furniture have been replaced by bright neon cascading pills in the background. It’s all so magical. It’s funny that I would even consider so heavily the design or lack thereof of something that makes me no money and is in most people’s eyes just a hobby. But truthfully, it’s my baby. I care a lot about it. And in recent nights I’ve woken up like Wait, should I put the links on THE LEFT SIDE?? Then I’m like OK there are wars going on and the location of links and font color is not so big a deal. I just needed to pull the trigger. So bang. I’m also reminded of the time I spent an hour picking out a dog collar for Monty and I guess it makes sense I’d take so much time with this. If you don’t like it, just give it a few days. If you still don’t like it, feel free to email me with only these words: YOU BLEW IT! I’ll know then what I’ve done. There will be some new additions to the blog but I thought I’d ease into those slowly. We’ll start just with cosmetics.

What else? I’ve spent the last two weeks in California at my sister and brother-in-law’s house in Orange County, California. (Side note: I recently realized my life is whole lot like Rob Kardashians, and that makes me have quiet moments of extreme discomfort.) It’s funny, because both my sister Amelie and my brother-in-law Keegan work full-time jobs, like most normal people. So in the morning they’re getting ready for work and I’m laying on the couch lifeless, half conscious. Sometimes I don’t even wake up to them scrambling around because I think my sleep schedule is so incredibly screwy that I’m in my REM cycle at 8:30 a.m., but that’s something different altogether. Last week Amelie was putting the final touches to her work attire in the bedroom and Keegan was getting ready to walk out the door. I was fumbling through pills on the couch. Before he walked out Keegan asked “Are you sure you don’t want me to leave the car here for you? Like are you going to get restless?” Amelie and I answered in a monotone voice in unison: “No.” “You’re not going to get bored?” Again, from both of us. “No.” Then we kind of all laughed, maybe for different reasons, and the functioning people went to work and I opened my book.

I am reading two books. I must admit, after I finished reading Freedom I felt like there was this new hole where something solid used to be. The way it feels after you lose a tooth. Then when I was in New York, my brother told me Strong Motion written also by Franzen competed heavily with Freedom so I brought it with me and have been enjoying that one too. It’s written in true Franzenian form and I once again feel like I’m getting a literary/science education just by reading the work, so it’s fun. But I don’t know that anything can top Freedom. OK I’ll stop talking about that now. Except wait I have one more thing. On NPR people with cool voices were all telling Jonathan Franzen he needs to keep an eye on Nell Freudenberger and there was all this jabber about the book The Newlyweds and so I decided to give it a try. So far it’s really good. She isn’t as inventive with the prose as he is but her writing is clean and the storyline has me going; a mail order bride from Bangladesh marries a 30 something engineer dude in upstate New York and there are hints of secrets and controversy and all the good stuff that makes good books good.

The other book that I just finished is The Seat of the Soul by Gary Zukav and it was really, really incredible. Not as dense as A New Earth but just as enlightening and really reassuring, especially if you fear death. And for a while I think I became a little too obsessed with this idea that I was going to die. In the sense that I would actually start to wonder, maybe I just won’t die. Like maybe I’m exempt? But duh, I’m not. And it’s cool, because he says all this stuff that makes so much sense and I basically underlined the entire book. I feel like I’ll just keep it at my bedside forever now. Until I..you know, die.

OK, that’s all the housekeeping for today. Or should I say book-keeping. Get it? Health-wise I’ve been managing pretty well. This morning was my first migraine I’ve had since leaving NYC two weeks ago. That’s a long time for me! Good stuff. Maybe I just need to be by the ocean for the rest of my life. California is awesome, but weird. I’ll talk about that next time. Cliffhanger!!

Health, Happiness, and Give It a Few Days.

How To Forgive.

Published on May 2, 2012 by Mary Gelpi19 Comments

The topic of forgiveness has been making its way into many conversations I’ve been having among friends and family lately. It’s also shown up in my books and things I’ve been watching, and I don’t take signs lightly. I’ve been thinking a lot about forgiveness and also about resentment. These are incredibly strong feelings to hold on to. Whether you know it or not, your willingness to forgive has more to do with you than anyone who has wronged you. The concept is simple; forgive those who have wronged you and free yourself, or stay angry and chain yourself to the past. I can tell you from personal experience that the latter makes life incredibly heavy and mostly uphill. The premise of this idea of forgiveness is one you don’t hear often but as I’ve been confronting this new definition, makes an incredible amount of sense to me albeit at odds with our typical definition in the realm of apologies. Ready? It is this: It is not our job to judge other human beings. Maybe you feel one or both of your parents did a less than adequate job raising you. Maybe you were wronged by a romantic partner or betrayed by a friend. Don’t you think it’s interesting that the wrongdoing could have happened something like 10 years ago, and yet you still feel the pain, hurt or anger as though the wound were made yesterday? This is the ego hanging on for dear life. The ego wants to see the person who wronged you suffer. They want to see them ‘pay’ for their crime. But as many people will tell you, or what you may have experienced yourself, is vengeance is often so exhausting that when you see your perpetrator pay for his crime, you often don’t feel any better. That is because your higher self doesn’t like to see fellow human beings suffer. Your ego does.

What I’ve gathered from recent material, is that forgiveness granted to others is a gift you give yourself. It does not exonerate what the other person did. It does not excuse them from their wrongdoing and it is not a symbol of weakness on your part. It is quite the opposite. If someone has wronged you, they will have to face those demons, the consequences of their actions, on their own. And you have to trust that they will eventually have to confront their behavior. It’s how energy and karma work. But whether you forgive them or not does not determine whether they will have to come face to face with their wrongdoing. It is impossible that they won’t. This is good news for us. This means we don’t have to hold on to what was done to us, we don’t have to take on the task of seeing perpetrators pay, and we don’t even have to wait for them to apologize in order to forgive them. The universe and karma will take care of these things for us. It is only our job to work towards consciousness and becoming a whole human being. And you can become neither of these things if your clawing away at a crime done unto you whether it be yesterday or 10 years ago. The resentment will infect all parts of your life, because it is such a negatively charged emotion, besides draining your positive energy and keeping you halfway in the past. It is impossible to become conscious and live fully in the present if you have one foot in your childhood wagging your finger at your dad. Here is the most relieving and powerful definition of resentment that I heard recently; “Having resentment for someone is like drinking poison and expecting your enemy to die.” Nelson Mandela said that. And I think it’s safe to say that guy has good reason to hang onto resentment, and yet he let it all go. So can we.

So, of course, this is all easier said than done. How do we let go of the past? For one thing, look at the anger or hurt that you are hanging onto. Where is it coming from? First you need to ‘bring it to light’ as they say. Chances are you’re holding onto pain and haven’t even fully acknowledged it. But it’s there. Maybe you are drinking it away, smoking it away, sexing it away, manipulating it away, or betting it away. But once you stop, (try stillness, that is when many answers arise) you will feel those inner parts that are hurting. The next thing to remember is that by letting go of the pain, forgiving what was done to you, you are not excusing wrongdoing. You are freeing yourself. You are feeling the hurt of what was done, maybe even one last time, and then releasing it. You’re saying that you aren’t going to live with the pain, anger, hurt, sadness, exhaustion or judgement anymore. (Keep in mind, the person who needs forgiving may even be yourself.) I know that the word surrender seems to have a weak stigma attached to it, but it is the opposite. Surrender is the brave acceptance of what is and also of what was. Whether you accept the things that have happened in your life or not, the truth remains the same. Your anger at the past won’t change it, so it is time to let it go.

I’ve thought heavily the last few days of what sort of pain I’ve been carrying around with me. After a year and four months, I feel like I have forgiven whoever or whatever I was mad at that I am sick. In fact, I turned that emotion around into gratitude. Of course, I wouldn’t have chosen this. But since when do I know what’s best for me in the context of eternity? I don’t. But intelligent divinity does, and I’ve finally begun to trust that. Last night I tapped into a moment that my deceased step-dad and I shared on New Years Eve one night. He had been in a terrible mood for three days. He would stomp around the house angrily, slam cabinet doors, sigh heavily at small things. Finally he blew up. It was over this: a dryer sheet. There was a dryer sheet on the floor of our laundry room, and it put him over the edge. He reacted, threw his hands in the air, yelled something about respect and consideration and grew red and heated in the face. It was an obvious overreaction and clear to my mom and I that he was dealing with the hurt of something else. How could a dryer sheet make someone so mad? Those things smell awesome! My mom stayed very calm and told him his behavior wasn’t acceptable, and the two of us left for a few hours and allowed him to get his head straight. When we returned, the two of them spoke in our office for a few hours, and I got ready to celebrate the New Year. When I walked into the kitchen, Roger called me into the office where he and my mom were sitting. He was weeping. He told me “I can’t be who your dad was. And I’m sorry.” I remember holding his hand and saying “I don’t need you to be my dad. I just need you to be you.” We looked at each other and for the first time in a long while, I felt that we really saw each other. Each for exactly who the other one was, not who we wished them to be. It was a freeing moment. I learned then the power of forgiveness, and have since (over 8 years ago) tried to constantly look past the external reactions of people, and into what is real. People don’t act in poor ways for no reason. They just don’t.

I’ll leave you with one last quote about forgiveness. It was said by Iyanla Vanzant, a spiritual teacher and author. (Life Class anyone?) Here it is:

Until you heal the wounds of your past, you will continue to bleed. You can bandage the bleeding with food, with alcohol, with drugs, with work, with cigarettes, with sex, but eventually, it will all ooze through and stain your life. You must find the strength to open the wounds, stick your hands inside, pull out the core of the pain that is holding you in your past, the memories, and make peace with them.”

Pretty powerful no? Since I am trying to break the pattern of holding onto pain, or holding onto judgement for others behavior, I find that having a replacement reaction makes it easier. (Sort of like supplementing a cigarette with a cup of tea.) Whenever I feel that judgment stir in me, I take out my gratitude journal, and find something about the person or situation which I find…crappy…to be grateful for. Maybe someone wronging you taught you how to have self worth, how to tell the truth, how to listen, how to set boundaries. There are any number of things. I just know that the people in your life that have caused you pain were not just sent here to mess with you. The universe is not a random kid playing games. Like Nepo says, It is our job to make sense out of pain; there is a lesson in everything. It’s not easy. It’s hard as shit. But the reward of compassion is far greater than the result of resentment. The time has come to free myself this way. I hope you’ll do the same.

Health, Happiness, Freedom.

Right Now O’Clock.

Published on April 25, 2012April 25, 2012 by Mary Gelpi18 Comments

I bought a watch in the airport on my way to New York. The battery in my old watch stopped ticking not too long ago, but to be honest, it mostly served an ornamental purpose anyway. It’s not like I have a real job and am constantly under a time crunch. But after wearing one for a while, I realized how nice it was to flip my wrist and know the time, instead of wondering around the house to find my phone, which was usually dead, plugging it in, and waiting for the numbers to appear. (There are three clocks in our kitchen at home: The one on the stove. The one on the microwave. And an old clock that hangs on the wall. They tell three different times.) Anyway I found this store in the Atlanta airport where everything was ten dollars. This impressed me. It was the equivalent to The Dollar Store with a less than typical airport markup. So I found this basic orange watch and purchased it for $10, which in my opinion is the deal of the century. But now I’ve been doing all this reading and studying about the concept of time and how letting go of the past and future, even immediate pasts and futures, is an important step towards consciousness, presence. Of course the telling of time serves practical purposes. In my case, it helps me know that I am always ten minutes late for everything. Anyway, I was watching Oprah interview Deepak Chopra and he showed her his watch and you know what it had on the face of it? RIGHT NOW. I was like dude, that’s what I’m talking about! I thought about scribbling that on the face of my new watch with a sharpie. That would of course ruin it aesthetically, but hey, it was only 10 bucks. Bargains rock.

I have been practicing presence. Lucky for me, I am so conditioned in slipping out of the present moment that it has become seamless, so each day gives me plenty of practice. I catch myself becoming sad at feeling sick, disappointed in my productivity, jealous of others resilience, or irritated at not feeling understood. I say three words to get me back to the present: Here and Now. The best way to handle these scenarios is first, not to judge yourself for the feelings you have. Just recognizing when these feelings arise and acknowledging that they exist is the beginning of progress. (If I’m understanding what I’m reading correctly) The second step is to not react to these feelings. And that is the harder part. But as soon as you have created a gap, the tinniest of gaps, between your emotions and a typical reaction, be it yelling, throwing, saying something hurtful, manipulating etc., you’ve done it. You’ve conquered that moment. You’re far from done, because your life consists of a gazillion moments that you can accept with grace, or resist and pay the emotional or physical price; pain, in any number of forms. If you’ve done it once, you can do it again. Now the goal becomes to live in the gaps. As Gary Zukav so beautifully puts it: “Live your life like a feather on the breath of God.” Cool!

I have been thinking a lot about the new state of mind I am consciously trying to move toward. And I’ve been thinking about the illness and its role and whether my state of mind makes a difference. Truthfully, I am not incredibly better physically than I was this time last year. Certainly the first few months of 2011 were the worst. I remember before seeing the specialist in Miami, we had to take data a few weeks before going. One of the assignments was to stand for 10 minutes and then have my blood pressure taken. I remember finding this exceptionally difficult. For the last few minutes I had to lean against the couch because I felt too heavy, too weak to stay standing. We found later this was predominantly due to low blood volume among other things, but the point is, while I have made progress, every day is still somewhat of a battle. There are constant symptoms showing their faces, coming and going, almost as though they have a life of their own. As though they make up their minds to visit me, then leave. Like the last two weeks where I had a migraine every day for nine days. I was doing nothing different but my head seemed to… hate me. Anyway, I just try to deal with each day as it comes. But what has shifted more than anything is my personal assessment of where my life is. I’ve let go of a lot of anger and resentment. I had to go through the emotional work of it, grieve the loss of my old self. But in a strange way, I have come to see the illness as a gift; not a hindrance, not an enemy. It is what I needed in order to evolve. This has not resulted in me getting all better. There is a real possibility I could be sick the rest of my life. But that’s not the point. Although if that turns out to be the case, so be it. I’m learning it’s still entirely possible to live well, love well, and find peace–sick or not. It really isn’t up to me to judge these circumstances. It’s only up to me to persevere with what I have and what I am with grace and wisdom. The part of me that wants to call my set of circumstances unfair, unwise, unlucky, or stupid, is only pushing me further out into the ocean of despair. (Haha, ocean of despair. Yessss) I’ve never met a happy or successful person who was working against themselves, against the pulse of life. Everyone I’ve met who is joyous and successful has taken what they’ve been given, and put it to use, not tried to cast it away.

So that is how April 2012 is different from April 2011. In simpler metaphors, I’m like a crappy car. I have this somewhat dysfunctional body, but that is not so serious of an issue in terms of achieving my purpose. The soul is not heavily effected by external circumstances like these; the personality is. And making that distinction is important. Our bodies are just a vehicle. So, my body is like a car that can only go 10 miles at a time and frequently overheats and needs constant oil changes and runs out of gas quickly. But even 10 miles at a time, a car can still get to where it’s going.

We can’t all be Ferraris!

Health and Happiness, 10 Miles at a Time.

For the Loved Ones of the Sick Ones

Published on April 9, 2012April 9, 2012 by Mary Gelpi17 Comments

List of Characters:

Gabe: Boyfriend, Likes to be doing things, Going places, Shooting things.

Mary: Girlfriend, Likes to lay around, Drink coffee, Talk about death.

Monty: Dog, Drinks out of toilet, Plays hard, Sleeps Hard.

There’s something sick people tend to forget sometimes, and this is that being sick isn’t only a struggle for us, but also tends to be a struggle for the people around us, too. It’s nobodies fault really, it’s just the reality of these circumstances. Spending the last month with Gabe, I saw how the illness effected more than just me, and the trouble it can stir up in our everyday relationships.

Gabe seems to me, limitless. It’s like he never tires. He can go and go and go and then he can go some more. Sometimes I tire just watching him. I envy his energy and resilience. He can only sit around for so long before he starts to go stir crazy, and that’s a huge fundamental difference between us. I don’t feel the need to be going places and doing things, and Gabe, well, does. “Do you want to go drive bumper cars today? Do you want to go to the shooting range? Do you want to go hit golf balls for a while? Do you want to go camping tonight? Do you want to get it on? Do you want to go jet-skiing? Do you want to go to an amusement park?” All of these questions are usually answered with somewhere between a grunt and a moan, sometimes a staunch “No” and sometimes a yawn and a “Maybe” if I’m feeling dangerous. Poor guy. How he ever ended up with a girl who barely moves I’ll never know. It’s easy to see how how he’d become disheartened.

It’s depressing, I know. The fact that an “amusement” park sounds like everything except amusing is depressing. But I’m just so used to the consequence of me saying “yes” to the normal activities that normal people find fun- and that is, a crash–that it has become my conditioned response to say no. I can’t drink anymore. I can’t be on my feet for long like I used to. I can’t stay up late or get up early. Sometimes a trip to the grocery store puts me over the edge and I pay for it. When you’re barely keeping your head above water, the slightest activites can drown you. So I’ve become conditioned to say no to a lot of things, simply because I know what will happen when I say yes, and often it’s more than I can handle. Sometimes I say screw it, I go and do what I want, knowing somewhere deep down that I’ll pay for it later. Every now and then, it’s worth the price I pay. But it’s rare. More times than not, I’m kicking myself for saying yes.

But as tired as I get in saying “No,” I see that it’s just as waring on Gabe in hearing “No.” I’m so used to thinking “He’ll never understand what its like to be sick all the time” that I never considered that I’ll never understand what it’s like being healthy and dating a sickley. Especially one that shoots down your ideas of fun and takes up ample couch space. The truth is, if you’re going to be with someone who has this illness, you have to be independent and comfortable with leaving your loved one behind and doing the fun things without them. I know it seems incredibly depressing, but what is harder for a sick person, is trying to keep up with a healthy person. It just doesn’t work.

What’s also hard is the desire not to disappoint people. I hate the feeling of letting someone down, canceling on plans, or suggesting activities that only a 90 year old would be enthused about (How about we play scrabble again for the 90th time?) The problem is, no one else will say no for me. No one will suggest we stop and rest every thirty minutes. No one will make sure I’ve taken all my pills. No one will play lifeguard and see that I’m waring down and suggest we cut off the fun and go home. Only I will do these things. Which sort of turns me into the negative nancy of fun and activities for others. It’s exceptionally difficult to suggest to young, energetic, tireless twenty somethings that we wind down the day and lay on the couch and talk about life and existential questions. Doesn’t that sound GREAT?!?! To most people, no, it doesn’t. And that’s where the trouble lies.

This illness has strained many of my relationships- intimate, friendly, and familial. I remember once my brother and I had a shouting match outside an NYC restaurant because Nick wanted to go on a walk to digest his meal, but I was feeling especially fatigued and didn’t want to go. “It’s just a brisk walk! It’s good for you!” And he honestly thought it was, but I knew it wasn’t. I was at my physical limit that day, and a 5 block walk was out of the question. He stormed off on his walk in frustration and I taxied it home with discouragement. But I hadn’t really educated him on just how sensitive this illness was. I was sort of still trying to live like a normal person back then, so when the sickness would come out and demand I obey it, it left everyone in a state of confusion. We’ve come a long way since then. Now I hear him defending me to others, even suggesting we cab it home when I consider walking. We’ve both learned a thing or two.

One question I ask is: Where do you draw the line? If I keep saying no to everything, won’t I eventually turn into a hermit trapped in a dark house with zero friends and zero fun? Because that sounds especially awesome. Wait no, that sounds terrible. The lesson for me has been finding the middle. Finding the area of compromise which keeps me alive with the pulse of life but doesn’t land me crashed in bed for 3 days. There is a middle ground, and part of my education in the last few months has been finding it. I’m still learning, too. In truth, it’s painful saying no all the time, when what you want to say is yes. But again, I have to be the master of my own domain! My domain happens to tire out after about 30 minutes of doing almost anything..standing too long, sitting too long, walking for too long…it’s ridiuclous, but it’s reality. And it doesn’t mean you have to turn off the fun. You just have to get creative. It’s also sort of a “Pick Your Poison” kind of situation. Do you want to say no and momentarily suffer sadness? Or say yes, and physically suffer for at least the next day?

Gabe and I are never going to be on the same level physically. This is someone who chased down rabbits on foot and wrestled an alligator on our first date (hence his nickname Gator) and worked 12 hour shifts of manual labor on an oil rig. (I’ll get to these stories, soon.) I..um…showered yesterday. So, there’s a little space between us when it comes to physical capablilites. But, we’re learning. I’m learning how to say no but stay positive. He’s learning to do the things he wants without me, and somewhere, in the grey of life, the circle of compromise, in the middle..we meet. All we can do is try.

To all the loved ones of sick ones out there, I know us sickley’s are a pain in the ass. But we do appreciate even the effort to understand. I see now, I need to try and understand, too.

Health, Happiness, and Compromise.

Who I Used to Be.

Published on March 30, 2012 by Mary Gelpi22 Comments

I dreamt last night I was back to my old tricks in gymnastics. For those who don’t know, I used to be a badass gymnast. I say that with pride because there are so very few things I really excel at, so I don’t feel cocky in admitting the one thing that I was truly gifted with as a kid. It came easy to me. I loved it. I didn’t care that practice was four hours a day every day during competitive season. I was so incredibly driven then, and I was nine years old. Looking back on it now, it’s like that was some other version of me from a parallel universe. Here I am in bed, wondering if I’ll have the energy to shower today. I can’t believe I used to do acrobatics on a four inch beam. And it was my favorite event, the balance beam. It required such devout focus, but I loved how everything would fade away to a colorless blur in the background while performing on it. All that existed was four inches of felt and a nine year olds concentration. It was almost holy being up there. And it was so unassuming to look at. It was literally just a beam; four feet off the ground, waiting around for anyone who felt worthy to mount it; one slip and it was all over. I’d always considered it the most difficult out of all four events, but immediately it was my favorite. I felt most myself up there. Most alive.

I was at the top of my game (both in gymnastics and in school) when I came down with the flu one ordinary spring day. I skipped practice, which I never did. Days with the flu turned into weeks, and I wasn’t getting any better. I was getting worse. Suddenly I began having headaches everyday, like clockwork. My muscles started aching for no reason. Sometimes my skin hurt to touch. In line at the grocery store, I felt too tired, too weak to stay standing, so I’d sit, on the dirty grocery store floor, my head in my hands. My homework began taking me an unwarranted amount of time to complete. At that time in third grade, we were being taught how to tell time. I remember looking at the clocks on the worksheet and the numbers not seeming in order. The questions about what time it was looked like they were written backwards. I’d reread them and reread them, slower and slower. I used to be incredibly quick. Always the first one done with in-class assignments. I grasped concepts easily and fast. Now words were scrambled, and so in order to answer a question, I first had to rearrange the words in proper order because my brain for some reason, liked to put all the words in a jar, shake it up, and spit them out in whatever sequence they fell in. This took completing things three times as long. Not to mention my pounding head didn’t like to read things when it hurt. None of it made a lot of sense. Even looking back on it is a blur. But we went to a few different doctors who couldn’t find the answers. My mom said she was cringing in silence because I was showing all the symptoms that she had when first becoming ill in the 80’s. She didn’t say anything for a while, but after months of being sick and getting progressively worse, she knew it was what she feared.

I was basically home-schooled by my mom for the remainder of third grade. I spent a lot of time in bed. It was a strange time. But after four or five months of the “flu,” I slowly began to get better. I wanted so badly to get back to my routine. I wanted to be a kid again. But what I really wanted was to get back to gymnastics. Finally after a very very long hiatus, I slowly eased back into it. My teammates and coaches all welcomed me back and I was thrilled to be doing what I loved again. But, of course, things had changed. I still had all the skills in me that I’d acquired since age 5, but my body wasn’t as resilient as it used to be. I’d be unnecessarily sore for days. I tired out easily in the middle of practice. Out of nowhere, the back of my heels started delivering sharp pain when I walked. I thought it’d go away but didn’t. At the orthopedic doctor, I was diagnosed with calcaneal bursitis. Some big word for my ten year old mind that meant walking was going to be a bitch now. One day at practice, while jumping from the low bar to the high bar, my right hand slipped and I swung around, slamming my head into the metal beam which held up the bars. I knocked myself out for a few seconds and woke up on the floor with a few teammates and my favorite coach Steve crouched over me yelling my name and “What happened?! What happened?!” as though he were angry or something. Of course, he was just worried. The E.R. later diagnosed me with a concussion and told me to take it easy for a few days. I had an enormous goose egg on my head and a scab on my nose. I brought that goose egg to show-and-tell the next week. My friends were impressed.

One by one, the signs revealed themselves that I wouldn’t be able to continue gymnastics. I felt like John Elway when he cried during his retirement speech and uttered “I can’t do it physically anymore, and that’s hard for me to say.” It sucked, because I was good at gymnastics, and not much else. I ended up “retiring” at the ripe old age of 11 and it was a terrible decision to have to make. I tried other sports and hobbies that weren’t as physically demanding, but I mostly sucked at them, and none compared to what gymnastics offered me.

It’s funny to think where I’d be had I not gotten sick and stuck with gymnastics. I showed a lot of potential. My coach Steve even pulled me aside one day and said if I stayed on track, I had a shot at Olympic tryouts for Salt Lake. It was probably something like a 1 in a million shot, but still, just him believing in me meant everything. Who knows where I’d be. But once again, the illness was making decisions in my life that I wouldn’t have made on my own. Similar to last year when I retired from my work at the gallery. I wouldn’t have made that choice on my own either. But sometimes I wonder if I was given this illness because the great designer of my life knew I wouldn’t make those choices on my own. I would only choose them out of necessity. And these choices, will bring me to exactly where I’m supposed to be. We have a tendency to think only we know whats best for us. And that was the root of my anger back at age 11 and more recently last year when I felt I wasn’t being dealt a fair hand. Periodically, usually in stillness, I feel the wisdom of something else at work in my life. When I start to trust that wisdom, my life isn’t so much something I own as it is an energy, a cause; a vehicle that I simply need to ride in (and enjoy) the paths shown to me, not get angry at the ones that didn’t materialize. Tolle puts it this way:

To complain is always nonacceptance of what is. It invariably carries an unconscious negative charge. When you complain, you make yourself into a victim. When you speak out, you are in power. So change the situation by taking action or by speaking out if necessary or possible; leave the situation or accept it. All else is madness.

So there you have it. No more whining about who I was, what I had. I need to stay present to who I am now. What I have now. And right now, I have some embarrassingly ridiculous gymnastic photos for your viewing pleasure…Feel free to point and laugh.

Health, Happiness, and Awesome 90’s Photos.

From Bed.

Published on March 23, 2012 by Mary Gelpi27 Comments

It’s with a general heaviness, random panting, irregular heartbeats, in and out of focused vision, an incredibly determined migraine, and somewhere around 2-3% energy that I write todays post; pale faced and slow moving. I said I’d write good bad or ugly, so here’s sticking to goals. I’m sitting up in bed, with the computer propped up on a pillow and pill wrappers and bottles skewed about the room. If you didn’t know any better, it’d be anyones guess what’s wrong with me. Aids? Cancer? Recreational Pill User? I don’t even say the name anymore when people ask. “I have health problems.” It’s surprising that people don’t follow up after you spill that general type of information. They usually nod and that’s the end of that.

Poor Monty. I always feel bad for him on days like today. It’s beautiful here. Sunny, cloudless. I hear the neighbors who are sitting out on their docked boat- they must have an awesomely hilarious guest over today because they keep erupting in this uproar of laughter and somehow, it helps. I like hearing it, even though it doesn’t involve me. Monty is wondering why we are indoors when the weather is what it is. And yet somehow he knows. He doesn’t insistently paw at me and make the whiny strange sounds of a dog trying to speak a humans language in an attempt to get me outside. He sees the signs and lays down next to the bed. I left the door open so he can come in and out as he desires but he stays in here next to me. What a friend.

As usual, I try to connect the dots. This is the fourth migraine this week and my medicine is running dangerously low. Insurance only pays for 9 tabs a month of Frova, (it’s a new one I’m trying) and I used up all the maxalt already. I ask the pharmacist how much 9 tabs of Frova is out of pocket and she clicks away on the keys and I wait for the damage. “Two hundred and thirty dollars,” she finally gets out. I laugh and she, sympathetically, laughs too. “Sorry.” “It’s OK.” But we both know it’s not really OK. It’s strange that a company decides how much medicine they’ll cover for you in a month, almost arbitrarily. It’s strange that someone who needs the benefits of insurance the most is often denied. Strange that the cost of healthcare under an insurance policy is of an affordable, negotiated rate and yet if you aren’t covered those rates are 200% more. That’s one way of saying it. Strange. I count my three remaining pills and send a prayer to the universe to let up on these train wrecks of migraines I’m getting. Most likely, I’ll have to dig in out of pocket again and feel that scary, hopelessness of watching my parents savings go to pills. I cringe when I think how much of it has already gone to medical expenses. Too much.

But there’s no sense in fearing it, in having anxiety over it. It’s our livelihood we’re talking about. “What’s the alternative?” my mom asked as we were going over finances before my visit to the CFS clinic in Miami last year. “Sit around and suffer endlessly while holding onto our savings?” The truth is, we’ve been rich and we’ve been poor. We, like so many families, have felt the sting of the placid economy in the last two years. My mom and I are unable to work, so my step-dad has been the only one bringing in income. And his workload has been lower than he’d like, but you do what you can. Today, we’ve got a roof over our heads, food on the table, and we have our damned pills. So no stressing about when the money runs out. My dad told my mom never to worry about this sort of thing. That she and the kids would always be provided for. And so far, he’s been right.

I know this sounds like a sob story of a post, and I don’t want it to be confused with a cry for help or plea for sympathy. It simply is the reality of this illness and day-to-day life. There are so many people out there who don’t have a parent’s couch to crash on, who don’t have their parents to pay for medical needs, and are forced to work fulltime–through the pain, exhaustion, and ache of this, and most of the time it’s silently, because no one really gets it. Telling your boss or co-workers you have “Chronic Fatigue Syndrome” doesn’t seem to go very far. Many times it worsens the pain from the sting of not being believed. When I told the owner of the gallery what I had, he suggested yoga, and I contemplated shooting myself. But once again, my point, is that you don’t have to be believed. Don’t make that your cause. They will or they won’t believe you. Only you can know what your battle consists of, and we live among so many who are fighting quiet battles of their own. We aren’t the only ones; far from it. You can only do you, and you can only do today. All I can tell you, like my mom tells me, is that there is so much research going on right now–More than there ever has been, and there is this tangible feeling of hope that comes to me at night sometimes that there is an end in sight. We will get there. So hang on.

Probably the rest of today will be like spent like this, in bed. Luckily I’m reading an incredibly good book (Freedom by Jonathan Franzen; if you’re couch or bed bound these days, or simply looking for a great read, I highly recommend it.) so I’ll have that to carry me. My migraine has finally subsided enough to where I should be able to read sentences and actually comprehend thoughts without wanting to vomit. His writing is incredible. It’s more than just a wonderfully told story, it feels like a literary education in itself. I underline all the words I don’t know in blue. I’m in love. Anyway, it’s time to rest some more. Which will be followed by more resting. And then possibly I’ll conjure up some energy and brush my teeth! May even get dressed! If I’m feeling really adventurous, I may even braid my hair! Nah, who am I kidding. I’m just going to read.

Health, Happiness, Bed Bound.

Let’s Talk About Death. Yeah!

Published on March 15, 2012 by Mary Gelpi21 Comments

Once again it is nighttime and everyone is sleeping, but me. This is often how I spend this time of night; listening to the in and out breaths of humans and/or dogs around me, and thinking about how everyone including me and including my dog, without hesitation, is going to die. I can never figure out why this thought drowns me at times. But sometimes it’s so incredibly real that I have to talk myself out of thinking about it. Like eternity. Like time and space. Sometimes it’s too much.

And other times, also mostly at night, I think about what an elephant in the room it is; that we’re all going to die, and nobody is talking about it. And if you try to talk about it, you’re either morbid or misunderstood, or both. And that doesn’t make the infringing feeling of The End feel any better. I think about death in many capacities, but mostly I think of it in my own terms. How will I die? How old will I be? How does my story end? These are all silly meaningless questions that I can’t know the answers to. So why are my dreams filled with me or Monty dying all the time? And why do I always stop at the obituaries section of the newspaper? I’m pretty sure that means I am morbid, and that’s been something I’ve insisted I’m not. Crap.

You know what happens when there’s an elephant in the room that nobody talks about? Well actually, I’ve never heard the answer to the proverbial question, but I think it goes something like: Eventually the elephant poops and everyone at the cocktail party is like “Hey!! There’s elephant poop in the middle of the living room!” and everyone freaks out and screams and before you know it your guests have ruined their shoes and saying “We should have seen it coming.” If they just would have talked about the elephant in the first place, it wouldn’t be such a surprise coming across elephant poop in the living room! Get it? Human Death is the elephant poop in this analogy. Did I make that clear? I’m not very good at this. AM I. Anyway, I use that analogy because when someone hears about someone dying, it’s exceptionally hard to grasp the idea. It is sad. It is tragic. But no one ever says “Mary died today, and this was supposed to happen.” I hope someone says that on the day that I die. But what we say is “You’re kidding! It’s not right! It’s not fair!” As if we were ever promised to live forever. As if dying wasn’t a part of the deal the whole time. Funny how we act about that.

Maybe all this death talk is because I’ve been feeling so deathly lately. I was on a pretty good streak for a while there, I’d been doing better than normal. My energy level was up and my pain tolerable. As a result, I pushed myself a little bit over the edge so today when I softly blinked my eyes open around 7 AM my head was like GOOD MORNING YOU HAVE A MIGRAINE TODAY. And I was like, “Loud and clear. Thanks, head.” Not the best way to wake up, but once again modern medicine rescued me. Now I am migraine free, but wide awake and wondering if I should sketch out my funeral plans. OK, sorry, I’ll stop with the morbidity. But I’d like to let it be known, it doesn’t depress me to talk about death. In fact, it excites me. I don’t think you should sit around sulking all day. But I don’t think it should be avoided like it is. Once my brother Nick and I were talking about it, and he said “I mean, it’s gotta be a cool experience, right?” And I totally agree with that. Death has to be cool. But most people don’t wanna talk death with me. They wanna talk about birth control or facebook or Mitt Romney and sometimes while people are talking, the words “We’re all going to end up dead,” are circling around in my mind in one of those cartoon bubbles. And I say these words with joy! I swear. It doesn’t make me sad. It’s just such an incredible mystery. Why aren’t we talking about it?! Can’t a girl just get a cup of coffee and have a light hearted conversation about life and dying and tentative funeral plans? Good grief.

I guess I am still working out my death issues. This is the part where I wish I saw an analyst so I could say “My analyst seems to believe I am going through a minor existential crisis as I confront my own mortality and begin to humbly accept that this life, while precious, is temporary.” But I don’t. Analysts are expensive. And my mom is pretty good in these areas. Anyway she says the death dreams are just my subconscious fears playing themselves out. I suppose it’s your basic fear of the unknown. Plus, its not like I’ve been able to ask any of the people I know who are dead to tell me about the whole dying thing. Wait, that is a really good idea. Why haven’t I asked all the dead people I know how the whole dying experience is?! Duh, I have so many sources! I’m going to say a little prayer tonight, ask for some answers, and hopefully stop thinking about the things that I cannot control and that I can’t know now. Everything in due time. Everything.

Health, Happiness, Elephant Poop.

Sounds.

Published on March 3, 2012 by Mary Gelpi7 Comments

If there’s one thing I love listening to, it’s the idle conversations between couples. That casually themed chatter is sometimes the most revealing and genuine to witness between a couple and I love hearing it. I spent so much time in our office last year. It being attached to the kitchen and me being attached to the couch put me in prime eavesdropping territory. My eyes were often closed and for a little while each day, I experienced life purely through sounds and every once in a while, through smells. That became some kind of fun for me. The game changes when you’re couch bound. You come up with new ways to pass the time. And your attention pays itself to things you never noticed before.

My step-dad is usually whistling when he enters the kitchen, and the last note always has a strong bravado, which is impressive, because not everybody can do it. If it’s first thing in the morning he empties the ice maker into the sink that is inevitably clogged and frozen over from the night before. It’s been broken for a while now, but it will most likely be some ungodly amount to fix it, so we haven’t yet. If anyone is in the kitchen then you can bet on Monty being in the kitchen, too, his paws lightly stepping just behind whoever’s in there… Just waiting for something edible to drop. And no matter who it is out of all three of us, we all say “Hi buddy!” when we see him, in a usually very high pitched voice. I can almost hear his tail wag back.

My mom is a softer walker than my step-dad. Her feet “slide” on the hard wood floor and I notice mine do the same thing. Maybe it’s the fibro. Too weak to pick up our own stupid feet. Marc walks with purpose. My mom sortof glides; her feet swish between steps. Sometimes she walks in a room, looks around and then squints her eyes and says out loud “Now what did I come in here for?” From my lifeless position on the couch, sometimes I try to guess. “Reading glasses. Kool Aid. Drugs.” I hardly ever get it right.

My favorite sound from the kitchen is the sound of coffee being made, but that’s mostly because I love the sound that the cannisters which hold the coffee grounds make when you open and shut them. They’re those flip-up air tight stainless steel containters, and something about the sound eases me. Then the filling of water, the pouring of water, the spoon from the drawer, and the grunting burp the machine makes as the first few drops peep their way out. I like the sounds of the whole method. And the finale; the cup clinks on the marble counter, the pouring into the cup and the topping off with cream. It’s a nice process to listen to and I never get tired of it.

But back to these idle conversations. I’m not sure precisely when I started to become so fond of them, but I really do love to hear them. Usually it’s about groceries or about who called that day or talk of how his clients are doing and how one says to say hi, says to feel better. And its usually against a backdrop of dishes being loaded or soup being made or ice being dumped or something equally mundane, but there’s something reassuring about it. Something very real about it that makes me feel like everything is OK. Maybe it’s because there’s been enough heavy stuff in life so these moments where my mom is rearranging items in the fridge and we’re talking about whether we want homemade chicken noodle soup or vegetable beef soup is something to relish. Because those are simple and pleasurable decisions to make. Ones I will never get tired of making, or listening to.

I find that it’s a habit I’ve carried with me. Now I sit in one room and listen to all the sounds unfold in another. I still love listening to couples talk about nothing. I like hearing how they greet each other first thing in the morning. I especially like when I hear a couple laugh, just the two of them. I even like to hear them argue! But the harmless kindof arguing, not the arguments that stem from not loving well. I realize this makes me a bit of a creeper, but we’ve discussed this. I put it all out in the open about my creepy tendencies when I wrote about stalking girls wedding albums on facebook that I wasn’t even friends with. Creep. er.

Anyway, I’m not writing from the office these days, from my couch that I was essentially physically attached to for so long. I’m a bit more mobile now. But I still think about for how long I layed in that room, quiet, and listened to what life sounded like. It’s funny that sometimes even listening to idle talk about soup and groceries still somehow managed to make me feel like I was part of the conversation–that I wasn’t so far from life. I still lie in rooms listening to parties or whathaveyou in the next one over. Last night I was listening to friends playing Catch Phrase, and I knew one of the answers and couldn’t keep it to myself so I belted it out. I knew the next answer too, so I belted that one as well. I heard them cheer, so finally, I got up, and joined the game like a normal human being. You can only listen to the next room for so long. At some point, you gotta crawl out of the cave. It’s something I’m working on.

Health, Happiness, Noise!

Trusting the Battle

Published on February 22, 2012 by Mary Gelpi23 Comments

I’ve received quite a number of emails over the months and read many responses from people who ask how I stay so positive, happy, and humorous among illness and all the things I’ve lost. It makes me smile to read emails like that because it’s sort of like “Oh, haha, these people think I’m happy and have my shit together.” The truth of the matter, is that happiness is something I work at, every day. I mean that. I’m not a naturally chipper person. Especially in the mornings. Most days I don’t feel incredibly alive until about 7 pm. I don’t have a ton of friends or a blooming social life. I am OK with that as I’ve always been someone who enjoys solitude. But I just don’t want to give the impression of “The grass is always greener” over here. I’ve gone through a lot of heartache and despair. I’ve just made it out on the other side. But I still struggle with optimism and simple joy. Writing here has enabled me to find the lessons that were hiding beneath the tears and sickness and loneliness. So sometimes it appears that I’ve got it all figured out and wake up whistling the tune to “Oh what a beautiful morning, oh what a beautiful day…” I don’t. I work to find the beauty and meaning of every day of my life. And many times, I fail.

I have been prone to periods of despair throughout my life, especially last year. One day in February, I cried almost the entire day. I kept thinking I would run out of tears, and I never did. As soon as I’d finish blowing my nose and wiping up my face, I’d sit down just to have the tears return and my heart go back to aching. That night, my mom brought in tomato soup to my room and made me eat even though I had no appetite. There I was at 26 years old, being spoon fed by my mom. It was humbling, but also a really beautiful moment to know that even in all of the isolation I felt, someone was still there to feed me, when I didn’t have the strength to feed myself. She talked me through the pain and the tears, many of which were falling in the orange liquid in the bowl and making little ripples like a rock in a pond. I remember how sad and hopeless I felt that night, distinctly. But, I made it through, with the help of my mom. It wouldn’t be the last day where I felt like I was drowning in the sadness of my own story. But each of those moments when I reflect on them now, were revealing something quieter, and not as easy to see. In my anger that I had to move back in with my parents, I missed the fact that I was lucky to have somewhere to go and have someone to take care of me. In the sadness of losing my job, I skimmed over the idea that staying there would’ve made me sicker, possibly to the point of no return. Last year revealed many moments that at times would suffocate me, if I looked only at those moments. But life isn’t isolated that way. In every moment of darkness, something else is revealing itself, if we choose to see the whole of it. A lot of times, I had to stop feeling sorry for myself and take an honest look at the way things were. This was not easy, and it still isn’t easy. It’s work. Like Nepo says “This is the trick to staying well isn’t it; to feel the sun, even in the dark.”

I still struggle today in finding the meaning of my life. But further than that, I struggle with general happiness. I sometimes slip and get stuck in a hole. At times it feels easier just to be depressed or angry. And momentarily I guess it’s OK to feel those things, I just know that the only times I’ve been able to move forward is when I choose to look honestly at my experience and try to see what it has to offer, not what it has taken away. Staying mad, staying sad, saying ‘It’s not fair’ just keeps me in the hole. And who wants to live in a hole? It’s dark down there!

Everyone is fighting their own battle, whether it shows on the outside or not. We often assume everyone else is happy, has an easy life, and could never understand our struggle. I often felt that way last year. But that thought is not only our ego trying to isolate us, it’s false. Peel back the layers of any person, and you’ll see the battles they’re undergoing and the scars they carry. I have mentioned this before, but it is something that has stuck with me for a while. Trust your battle. Trust that the life experience you were given is exactly what you need. The lessons you learn will become the whole worlds lessons. Wayne Dyer says to find the lesson, you have to actively ask each experience “What is this here to teach me?”

So that is what I’m working on; not only to seek the lessons of my experience, but to try and live each day happily and with ease. Again, it’s something I have to work at. Sometimes I get so wrapped up in the questions and mysteries of life, that I miss the simple pleasures. I could spend all day wondering and fearing whether the sun will rise tomorrow, and wrapped up in that anxiety, I miss the sunset. I’m going to try and trust my experience and my battle. I’m going to stop wishing for a life that isn’t mine. And I’m going to try whistling that tune “Oh what a beautiful morning, oh what a beautiful day…” every morning. Because my grandma always whistles that tune, and I’ve yet to meet anyone happier.

Health, Happiness, and Battles.

The Day My Dog Sh*t on Park Avenue and I Didn’t Have a Bag

Published on February 11, 2012February 11, 2012 by Mary Gelpi23 Comments

The following is a true story. For realsy.

It was August of 2008 in New York City and unbearably hot. And that’s coming from a Southerner. They were calling it the heat wave of the century. At least I was calling it that. People were basically stripped down to nothing and when you breathed you felt the heat expand in your lungs. The cement made the already hot air electric. It would burn you at times, only letting up for about an hour between 2 and 3 am. Walking outside was what I imagine the last two weeks of pregnancy must be like; simply uncomfortable. That being said, I was REALLY hungover.

There’s something about being hungover that makes heat…hotter. I basically just want air to be blowing at me when I’m under the weather that way. I used to stand in front of the freezer with the door wide open for far too long and just let the cold air rush past my face in some weird attempt at relief and to try and make the hangover go faster. Like it’s some guest I can get scoot out the door. But everybody knows…you just have to sweat it out. I still can’t believe we’re capable of growing seedless watermelons but we can’t figure out the cure for a hangover. That being said, Monty really had to pee.

Every dog owner knows that on the day after partying, the dog totally gets shafted. “Sorry buddy. Mommy blacked out last night and now my everything hurts and so we’re probably not going to play fetch or do anything remotely fun today.” I feel awful when it happens. I hardly drink anymore because, well, I feel dead all the time on my own. But there were those days. There WERE those days–When moving was all-too-painful and your pores smelled like candy and vodka and your hair was inexplicably sticky? It was one of those days. Monty needed to do his business. New York was exploding with heat. And I was deathly hungover.

I was staying at my brothers apartment. It was on the third floor, so I mentally prepared myself for the walk down the stairs I was about to take. I walked cautiously and told Monty “Go slow buddy. I could DIE at any second.” He seemed to notice I was out of sorts and behaved a little better on his leash. I pushed open the ridiculously heavy door at the end of the stairs and the sun and the heat and the smell of New York pour in and engulf me and I kindof throwup in my mouth. I swallow hard, blink my eyes forcefully a few times, and hold my head still while my eyes catch up with reality. I turn right, begin the walk down the sidewalk and Monty wastes no time. He spots the first tree, lifts his leg, and I contemplate letting the semi driving down the street run me over. He passes. And business number one is done. Great, keep going. There’s a spot that he loves to poop a few blocks down, but I’m wondering if I can make it that far. My life is in Monty’s hands. Or butt. I have to get this over with. “Just go anywhere buddy. Really, it’s fine to go on the cement.” But Monty is a Southern dog and is still getting used to shitting on cement. I can tell by the look in his eyes when he does it, it just doesn’t feel right. Maybe it’s the human equivalent to driving on the left side of the road in England. Or putting ketchup on a filet. Something like that.

As we walk on, my stomach starts to turn. Ah, the viscous waves of nausea that accompany the hangover. Will I puke? Or will it pass? The mystery of it all is fantastic. I look away from the sun and think of lemons. I always think of lemons when I am nauseous. I’ve done this since I was little and it’s the only thing that helps if I concentrate on it. Lemons lemons lemons lemons lemons lem…aaaaaand now my mouth is watering. The turning gets faster, the saliva is circulating in my mouth and I know it’s go time. We stop at a tree, I get on my knees, and share my insides with the streets of New York. Awesomely, my throw up tastes like gatorade. I find that Gatorade is the best thing to vomit. It tastes the same coming out as it did going in! I like the red flavor but really any of them will do. As I’m crouched over, puking, Monty tries to start licking it. “NO!” I yell with as much energy as I can get behind that word. Then I ralph again. I hear high heels walking towards me. I know she’s classy. I can feel how pretty and put together she is. She smells good too. “Hey, are you OK?” she asks as she hands me a kleenex. Is this rock bottom? I think so, but I can’t be sure. “Yeah, I’m fine. Thank you.” I don’t make eye contact. I feel so ashamed. I wish I were wearing high heels and expensive perfume and walking somewhere important. Instead I am upchucking on a sidewalk and my dog is trying to eat it. WHEN WILL I GET IT TOGETHER. OK, so the best part about puking is how good you feel after you puke. I take a deep breath, continue our walk, and bear the heat a little more easily. On to number 2.

We’re approaching Monty’s favorite spot, and we’re both getting excited. I can tell, he’s been waiting for this for a while. My relief after vomiting is short lived and by the time I get to his special spot, all my symptoms are back. Awesome. Monty does his business and I pick it up with a torn grocery bag, and it strikes me that picking up dog shit off the sidewalk with a damaged bag is NOT the grossest thing I’ve done today, and that is concerning.

We turn and begin the treck home. I am going to make it. Monty and I are both going to live and I smile at the idea of getting back to the apartment and not moving again until tomorrow. But suddenly, something is happening. I can feel it. I sense something with Monty. Why is he wearing that excited look he gets when he’s about to poop? He already did that. He’s sniffing at another tree and won’t come when I pull the leash. It can’t be. No. No no no. Not a DOUBLE POOP DAY. SHIT. DOUBLE SHIT. It’s a strange phenomena that happens once in a blue moon. The double poop. You never know when it will happen. But almost always when it does, you’re not carrying the bag with the extra in-case-of-emergency poop bag. SHIT. I am on Park Avenue. I am the human version of a car accident, and my dog is pooping and I don’t have a bag. Thanks Monty, thanks a lot. He wags his tail. My stomach turns and the road dizzies.

I have no explanation for what happened next, but it really did happen. There is a sudden breeze, and I close my eyes and just let the somewhat refreshing movement of air run over my face. It had been static air in New York for so long it felt like. Suddenly, a breeze. I feel calm. I try to think if this is a poop and run moment or what my plan of action is. Just as I contemplate options, I feel something grace my ankle. I look down and see that a Duane Reede bag was blown right onto my foot. The wind carried it from who knows where, and basically delivered it to me and this train wreck of a situation. I can’t believe it. I look around and make sure I don’t see a dude in a glowing white suit say “You’re Welcome. By the way, I’m God.” I don’t harp on it too long because that breeze is dying down and of course, my stomach is turning. I disgard Monty’s second helping. We complete our walk and make it to the apartment, up the stairs, and onto the couch. I don’t move for the next 12 hours. I play that moment of the bag hitting my ankle over and over. And that was the day my dog shit on Park Avenue and I didn’t have a bag.

And then, suddenly, I did.

Health, Happiness, and Always Take a Second Bag.

Me + World

Published on February 9, 2012 by Mary Gelpi20 Comments

Night is my other best friend. The darkness allows you to be alone, eat alone, and there are no silly questions about it. You’re allowed to sit in a room with no tv and no music and no electricity and nobody asks why. I like to lay with Monty at the end of my bed and think of everything that is alive. I start with me and move across the room, the street, the neighborhood, city, state, and then I move up. Out. I pan out and watch it all from above, see where I fit. Spot the breathing electricity out of windows. I do this for hours at night. I try not to get blindsided by some faulty thought that I am alone. Because that isn’t true. When I look through the lens properly, it’s clear that all the little beams of light coming through all the little windows connect us. And in dissillusioned visions that imply you’re alone, you find in kind silence, you’re not. That little list you’ve made of everything separating you- turn it upside down. Make a funny doodle of it. It’s a delusion gaining momentum. To position yourself away from the world and claim you’re alone is uncreative; as if this is your only life! You’re not. It isn’t. And all the energy you’re expending effects every little window you think you aren’t connected to. It dims the lights.

If you’re alone, then why do you feel sad when you see a stranger cry? Because you’ve held her pain before. Why do you feel bad for the prisoner, the killer? Because you’re capable of hate, too. And you gave money to him on the street, when you know just what he’ll buy with it. But he showed his gold teeth to you and you smiled back and didn’t let anybody see–You’ve been desperate, too. And you felt loss when you killed an ant and sad when you watched an elephant. You’ve been looked over before. If there’s only you, why do you smile when you see a dad playing with his kid and a grandma teaching someone to cook and a dog making someone laugh and old people holding hands? Because you’ve felt unconditional love, too. How even the thought of lemon makes your mouth water, you know just what that kind of love tastes like. Why when you’re all alone in bed does your mind flood with all the people of the world, the ones you’ll never see, and the open parts, the good parts that haven’t happened yet, and a deep warmth rises in you, that though your body is weak your spirit is strong and for a moment it will occur to you just how big a dent you can make. Because you are not alone. Just as when the lights turn off, there is blackness and in the newness you think everything’s disappeared–Adjust. The chair is still there, where it always was. Now you see it when you look with right eyes. You couldn’t be the only one here. You’re important, but not that important. You’re not everything. But you contain the energy and carry the weight of everything that ever was.

You embody every war won and every battle lost. Every kid that died and everyone that survived. Your fingers touched the cotton of every cotton quilt and your arms grew heavy from the labor all day long. You’re jaded from all the gold in the world not being enough and blind from an excess of things that left you empty. Your tears are made of theirs. Your laugh makes the same sound. Your heart is made of all the holes of infedelity and the solidity that binds it is made of loyalty and kept promises. That’s why every heart is capable of breaking but can also be reassembled. Just as it can hurt, it can heal. Ask a child to love you and she’ll know what to do. That’s why when you cry, I cry too. And that’s why when you die, I’ll die too. When we see each other there, after having all this fun, we’ll laugh at the bad parts, rejoice at the good parts, and once again we’ll smile together.

Tell me again, how you think you’re alone? These aren’t bad things, friend, these are treasures we share.

Health, Happiness, Togetherness!

Community College Dropout

Published on February 2, 2012February 2, 2012 by Mary Gelpi27 Comments

It’s a beautiful thing to wake up and believe that you’re exactly in the place that you need to be. Even if it’s not the place you plan on staying. For me, figuring out where to go or what to pursue next has always heavily involved where not to go and what not to do next. I’ve made some decisions in the recent two months that go in a very opposite direction from what I had planned. You know what they say: Man Plans, God Laughs. I suppose this is my official (and late) letter of resignation to Delgado Community College. Unless of course the writing doesn’t work out, in which case I’ll need Anatomy and Physiology II in the Fall and in the afternoon, please.

imgres — Bye Bye Delgado. It's Been Real.

I’m often surprised how hard it is for me to admit that I am sick. All my friends would tell you differently because they’ve all heard me say a million times “Sorry can’t make it. Feel like death again,” or something similar and I operate an entire blog centered around my stupid health! But it hasn’t always been this way. And in my instances of pain I have no hesitation in admitting that I feel awful and to just go ahead and count me out of whatever activity they’re planning. But for some reason, in a larger context, in the long term, I’ve never really considered myself sick or disabled or incapable. That’s why when my best friend Jess and I talked about nursing school this summer, I jumped on board immediately. I was feeling better, (as in, I could walk with ease now) and I wanted to be working towards something. This was in July so I had been away from my job since February and was really feeling the void of not doing anything. I was writing, true, but no one takes a jobless “writer” seriously. I didn’t even take myself seriously! Everyone is writing a book. Everyone has a brother in a band.

Anyway, I have always had a passion for nursing. My mom was a nurse, and since I was young I would dress up in her lab coat, wear the stethoscope around my neck, and walk around the house pretending to conduct my highly important work of tending to the sick. I’d also beg people to let me give them an exam, which usually ended up in me asking my Grandma questions like “And how often do you take fiber?” and listening to our dog Bacchus’s heartbeat. When it came to choosing a major in college, I chose Journalism for two reasons. 1. I’m an inherently curious person and 2. It came easy. My writing classes were easy A’s for me. Math and science meant a lot more work on my part. So I chose what came natural, and that was the right decision.

But now this nursing idea was popping up again, so I jumped on board. It was something I had interest in anyway, and I only needed a few pre-reqs in order to be admitted, so I went for it. I signed up for 3 classes, passed the entrance exam, and decided to start a silly blog to accompany me on my sickly journey to nursedom. Oh how the tides would turn. Funny that I didn’t really stop and consider that the whole reason I even had time to consider going back to school was because I was sick and physically unable to keep up with the pace of the rest of the world. Nope..never thought of that…

Even after the blog went viral and other opportunities began presenting themselves, I finally sat down one morning and really thought about nursing school. I started thinking about how I handled my three classes at Community College. Usually, I went, so that was a start and my grades were fine. But nursing school is very intensive. Sometimes the hours are very long and I don’t think it’s one of those jobs that would be very forgiving about me calling in once a week or letting me come in late when I had a migraine. I know a few people attending nursing school now, and when I would see them after a full day and how tired they were, I knew deep down I wouldn’t be able to do it physically. Didn’t I know that before? And yet something made me go after it in August. Unfortunately I think it was ego. Something in me wanted to prove I could do what other people could do. I could be normal. And if I couldn’t make it through, I’d just give up. And that’s not really a responsible or wise decision on my part, but since it only began with 3 classes, I think those near and dear to me wished me luck and quietly thought ‘What the hell is that girl doing? She can’t even prepare her own meals!’ It was also not a wise decision because it was this kind of thinking that kept me at a job so long that I was incapable of keeping up with. It was ruining any shot at me getting better, and this would have done the same.

Luckily, I didn’t get far enough into nursing school to have to quit or give up halfway through. Three days before my last final, the blog went viral and new, more feasible opportunities presented themselves under the same heading: Writing. Remember? The thing you’re decent at and enjoy doing that comes naturally and doesn’t require you to use your feeble little body? DUH. Like Nepo says “When we stop struggling, we float.” Once I stopped trying to prove what I could do, I stopped having to try so hard, and was left with the gift I had all along.

What I’ve been considering lately is that my motive for going into nursing in the first place was very basic: to help sick people. And somehow, now, I am inadvertently given that same opportunity, just through different means; my words. I’ve received quite a number of emails from people with many types of health issues who say this site helps them feel less alone and less crazy, and makes them laugh, too. It’s a beautiful gift to be able to reach people that way. The internet rocks. It’s like I’m an internet nurse!

So I’d like to say thank you to everyone who has written, commented, or laughed, and to everyone who has found comfort, hope, or joy here. One of the biggest realizations I’ve had in all of this is that it’s entirely possible to be sick and still laugh, love, dance, and have a happy life. So don’t ever start becoming comfortable with the perspective that you’re sick and being sick sucks and thus, you’re life is going to suck. Being sick does suck, but you’re life doesn’t have to. Mine isn’t completely where I’d like it to be, but it’s getting there, and I believe more than ever in the prospect of true happiness. This realization is of course coming after a year of a lot of mental and physical pain and breakdowns and loss and lessons. But hopefully it can offer some comfort to anyone out there without them having to go through a year of pain and breakdowns and loss. Tolle says this: “I am not what has happened to me, I am what I choose to become.” I think I know what I’m meant to do now.

Health, Happiness, and Mom I’ll Pay You Back for That Semester at Community College Soon I Promise.

15 Things We Should Consider Not Posting On Facebook Anymore

Published on January 29, 2012 by Mary Gelpi104 Comments

1. How many centimeters dilated you are. Although it’s been fun following every day of your pregnancy, this is something we never need to know. Ever. EVER. Hang on I just started my period I’ll be right back.

2. You’re moving out so you’re giving away free shit. It’s nice and everything, but most likely no one will want your shit stained area rug or couch, even if it is free.

111005g — We're giving this couch away for free yall!

3. Picture of your baby in front of raisins. Picture of your baby picking up the raisins. Picture of your baby putting the raisins in his mouth. Picture of your baby chewing the raisins. Picture of your baby in front of a plate that used to have all the raisins he ate on it.

4. How much studying you have to do and how busy you are. You sure? Cause you’ve been commenting on my albums from 3 years ago for like, a few hours now.

5. Extensive details about your workout and the 10K you’re prepping for. I can play that game too! Walked to the bathroom. Walked to the living room. Pressed power button on computer. Typed on keys quickly without taking any breaks. I’m up to 75 words per minute baby!

6. A picture of the flowers your boyfriend gave you. Why are you thanking us? We didn’t give you the flowers.

7. Checking in at a place and tagging all of the people you’re with. Why don’t you just…talk to the people you’re with? Or play an actual game of tag?

8.Telling everyone how drunk you are or are going to get tonight. Don’t worry, we’ll be able to tell by the pictures you post tomorrow.

9. Stop having public Facebook birthdays. It makes stalking you sooo much less interesting.

10. Your weird urban-infused engagement photos. Although I’m totally addicted to looking at them, I don’t know when or why it became trendy to dress really nice and take photos in gutters.

engagement_14 — "Love the background in this one! So artsy!!!"

11. A picture of yourself, taken by you, liked by you, and commented on by you. That’s so narcissistic. Facebook is supposed to be about…wait never mind that’s totally appropriate.

12. Another post shit-talking the Kardashians. You watch ’em? You love ’em.

13. Status updates about how sick you are. No one cares about your stupid chronic illness!

photo-29 — Ugh, my fibromyalgia is acting up.

14. Pictures of inanimate objects with your hipstamatic photo app. Yeah we get it, even a picture of a lamp will look cool under that filter. But it’s still just a lamp bro!

Congrats on getting stoned and deciding you're a photographer now.

15. Any variation of this phrase: “Today is the day that I marry my best friend.” Shouldn’t you be like, preparing to lose your V card?!

Health, Happiness, and Glorious Glorious Facebook.

Photocredits:

Weird Urban Engagement Photos: greenweddingshoes.com

Shit Stained Couch: uglyhousephotos.com

Benefits With Friends.

Published on January 26, 2012January 26, 2012 by Mary Gelpi14 Comments

Let me begin by saying that the title of this post has very little to do with the content of this post, but the name came to me last night before sleep and I thought ‘What an awesome title!’ What I will really use the name for, one day, is a benefit I will have in honor of sick people and underfunded, under-researched diseases that hopefully I will be capable of donating millions of dollars to. Then we’ll take those fancy photos that show up in the “Out and About” part of the newspaper with sparkly dresses and older men with younger women and really, really, white teeth. Maybe next year.

I am sitting in the office at my moms. Correction, laying. Sitting up is difficult at this point because I am in the middle of a full blown crash. Not sure if I overdid it in New York or what happened exactly but my body is angry at me. It’s like, giving me the silent treatment by not giving me strength to walk or shower and making all my muscles hurt; under my fingertips too. It’s a particular but non-specific pain when my body gets like this. Just a general “bone-aching” but I always know when it’s happening because underneath my fingertips hurt. Very weird. Anyway, I am lucky, because I am home and under the care of Doctor Mom and not having to worry about calling into work, fashioning an excuse that will translate to a boss who never took a sick day.

This morning I sludged from my room to the office, my wrists quivering at the weight of my computer and my eyes not quite in focus yet. I took my first set of pills and waited for the pain to ease and my brain to start functioning. Take pills and wait. If there were an instructional guide on How to be Mary Gelpi, those two steps would be peppered throughout. My mom is sharing with me the symbolism of boats and chocolate and pies because I told her about my dream last night, which involved the family and me getting in a boat accident, where no one died and the whole thing was surprisingly peaceful- and the night before where I dreamed that Nick, my mom and I were at a lake house and my mom and I were gathering golden apples to make pie and Nick was fishing, as usual. It was a nice departure from my typical high-anxiety dreams where either I’m dying or watching someone else, like Monty, die. These last few were calm, so she is helping me process them. One of the perks of living at home: Coffee ready when I wake up, and a personalized dream-interpreter on staff. Score.

I’ve had a to-do list for days now that I can’t wait to get started on, yet I’m just unable to begin. Yesterday I spent the entire day in bed. Every few hours I’d wake up drenched in sweat, in pain, re-dose the meds, and go back to sleep. It’s a funny way to spend your day like that. Because by the time I “woke up” it was dark outside and Monty came in from a day spent frolicking in our yard and playing soccer by himself. Poor thing. I owe him a few games when I perk up. But I barely saw the sun, which is depressing. But that’s how crash days go, and I remind myself that it won’t last. In a few days, after successfully doing nothing, I’ll start to feel better. The nice part is, the sun will be waiting for me when I’m ready. Monty and the sun– they hold nothing against me. For that I am lucky!

I think the biggest teacher of this illness has been learning how to exist in the “chaos.” I’m often eager to jump into things…even boring things, like laundry. But I’ve had to learn how to let my toenail polish stayed chipped until I have energy to fix it. Let my laundry pile up until I have energy to do it. Let my phone ring without me answering it until I have energy to talk. There is something uncomfortable about letting things “go” that you want to tackle head on. For instance right now, I’d love to unpack my suitcase and do laundry. I’d also love to call my sister and catch up, write a few thank you notes and send them, clean my car, and oh yeah, SHOWER, but all of that will have to wait. And truthfully, many of the things we think can’t wait, can. No-one ever died from going one more day without showering. Well not that I know of. It’s a lesson I continually learn and relearn, but it’s valuable to see that, while I’d love to dive into these things, I cannot. They will simply have to wait. And I need to learn how to maintain in the grey of things–life between the trapeze swings. Just as the sun will be waiting for me, so will everything on the to-do list. Anyway, the computer needs to re-charge and so do I. I’m tired and weak and am going back to the underworld. I’ll see you when I re-emerge.

Health, Happiness, and Undone To-Do Lists

It’s Snowing In New York.

Published on January 20, 2012January 20, 2012 by Mary Gelpi16 Comments

It’s quiet because of the snow

Clear because of the quiet

And it snows because it’s empty.

There is room for it here,

In the box with all the questions.

The window across the street

Is reflecting the window next to me,

So I can see the neighbor kids

On tip toes, checking

When I see movement,

I check too.

As of yet it’s still a black sky turned orange

We wait, we’re patient.

I didn’t have it enough as a child

Never had to shovel it before school

So there’s no headache about it getting dirty

No bitterness of what it turns to

No worry of what it ruins

It’s a novelty to me

It’s what airplanes used to be.

I sit at a window, waiting

Most the days of my life.

I hold a box, open

That carries every question

I’ll ever have.

Tonight while I wait,

I thumb through curiosities

Laugh at old questions

And try not to let future uncertainties

Weigh the box down too much.

It’s a soft pink, satin ribbon

That holds the thing shut,

And when the snow starts

To fall tonight

I’ll open it

At the neighbor kids looking

At the clarity of it falling

At the quiet of it sticking

The couple laughing

The street lights changing

The flag that’s snapping

At the snow that’s falling

And I’ll catch all the little truths

That come with snow

And watch God fall

And then I’ll know.

Let’s Talk About Dancing.

Published on January 18, 2012 by Mary Gelpi17 Comments

I arrived in Miami on Friday to spend a few days here. This is partially the reason I’ve been so crashed. I never do exceptionally well when I travel, and this time was no exception. But it’s nice to be sick in a beautiful place. I mean if you’re gonna be a human waste-land, might as well be a human waste-land on a beautiful beach. My brother and sister-in-law had a baby shower this Saturday (she’s due in March)and we decided to make a Gelpi Power Hour weekend out of it. I am staying at a hotel on South Beach and I dreamt all night of heavy base techno music. Wait, that was not a dream. I was actually up all night listening to heavy base techno music ricocheting off the walls. At around 2 am I kid you not, Club Mango played that song “What is love? Baby don’thurt me…” and it was like a real-life Night at the Roxbury!

Truthfully it wasn’t the music keeping me up, though it didn’t help. My legs were on fire, cramped up and emitting heat like they do. So I read more of my book as the base and noise of drunk people bounced around below. At first I was agitated but then I grew to like the sounds. It added to the authenticity of my Miami stay. It reminded me of what the noise of being alive is like. Also they played a lot of Rihanna so, you know. That was cool.

Every now and then they’d play a song I liked and out of the corner of my eye I’d find my foot tapping to the beat of the song without knowing I was doing it. The interesting part of it was that as I noticed this, I started reading a chapter in Marc Nepo’s book called Questions Put to the Sick: When was the last time you danced? I think this is what Carl Jung would refer to as Synchronicity. But that’s another story.

Allow me to say some things about dancing. 1. I love to do it. 2. I’m kind of terrible at it. 3. I don’t care. 4. OK I kind of care. 5. After a few beers I don’t care anymore. And I’ve been told my skills have improved. Anyway, I love dancing. I actually crave dancing. If there is a span of time where I don’t dance, I get the dancing itch, and the only cure is to rock out somewhere with loud music and move my body in any deformed way it feels that communicates physically the fun I’m having in my brain. It can be alone in my car, or at a bar, in the shower, or a wedding. Ooooh weddings. Those are the best. I think that’s why Dane Cook’s standup about girls saying “I just need to dance,” rings so hilariously true to so many people. Sometimes I’ll feel ansy and I know it’s because I need to just dance it out. I swear I’ll wake up the next morning after dancing and feel better, as though it was a bug I had to get out of my system. I’d argue it’s just as important as your dentist appointment or annual colonoscopy. You just have to do it. You’ll feel better once you do.

elaine_dancing_scene_seinfeld — I may or may not have been compared to Elaine in the past.

Or you’ll feel worse. Wah Wah. (Debbie Downer tone) Being sick and constantly walking a fine line between functioning and non-functioning, there’s always the possibility of over-doing it and paying a price. Like last year in March, I danced the Dougie way too hard one night and I was crashed the next day. All because of the Dougie. But I need to say this: it was worth it. Sometimes you pay a price, and sometimes it’s worth your while. “What happened to Mary?” “She Dougie’d too hard last night.” “Poor thing. I’ll make us some sandwiches.”

Here’s what Nepo writes about dancing:

The ongoing effort to dance, to give gesture to what we feel and experience, is ultimately healing because, as riverbeds are continually shaped by the water that moves through them, living beings are continually shaped by the feelings and experiences that move through them. If there is no water moving through, the riverbed dries up and crumbles. Likewise, if there is no feeling moving through the body, the being at the center of that body will crumble.

More often though, there is too much to give gesture to, and we fail to move these feelings through our bodies. In truth, much of our inner sickness comes from the buildup and pressure of all that is kept in. The ongoing act of releasing that inner buildup is what spiritual practices call embodiment. …Once unblocked, giving gesture to our inwardness not only frees us from becoming pressurized, but the gestures, once allowed out, teach us how to dance further into our own lives.”

Pretty cool right? I know some people think it’s just psycho-babel and the idea of someone shaking their ass in the club to Lil Wayne and calling it spiritual embodiment is just a joke. Understandable. But pay attention to the music you hear and the subconscious urge you feel to move. It’s not a calculated choice we make. Even babies and toddlers begin to dance (sometimes better than me) when music is played for them. Sometimes, we should be still, but sometimes we should MOVE BABY. And don’t let your thoughts get the best of you. Don’t try to analyze it or over think it. The best kind of dancing is unrestrained, uninhibited, belting at the top of your lungs-holding a pretend microphone-singing to a pretend audience, unrepressed, uncontrolled dancing. It doesn’t matter if you’re bad. If you’re having that much fun, you’re far from bad. You’re the best!

So the next time you’re out, or in, and you feel the hunger, satisfy it. It is actually good for you, for your body and your soul. If someone asks you why you’re dancing alone in the kitchen, tell them you’re moving your life experiences through your body so you can dance further into your existence. They’ll like that. Here’s one last anecdote about dancing. After my step-dad died in 2006 the house was oddly empty and the family was pretty down. My mom told me later she would turn on Ellen in the afternoons and dance along with her, by herself in the living room. Sometimes it was the only thing she achieved that day. But guess what? It made a difference. It changed the energy of the room. It changed her energy–Made her smile, even for 30 seconds. And in times like that, you’ll grab hold of anything to get you past the moment of pain. So I love that part of Ellen’s job is to get up every day and dance, and to get other people to dance along with her. I love that my mom got up and did it, even when she felt devastated and lost. These are small, small things that in the end can shape large parts of our lives. I haven’t danced in a while, so maybe I’ll give the Dougie another go tomorrow and just cut myself off a little earlier. For now, my legs are cramped and I’ll do some research on fatigue-friendly dance. Perhaps I’ll head down to the nursing home and see if there are any classes there. They’ll be more on my pace. Maybe I’ll even meet somebody special.

Health, Happiness, and DANCE!

An Experiment.

Published on January 11, 2012January 12, 2012 by Mary Gelpi44 Comments

*Contrary to feeling like death right now, I’m going to try an experiment. Here goes.

I woke up this morning and I felt great!! I had so much energy, I didn’t know what to do with myself. So I began by taking a six-mile run and watching the sun come up. It was beautiful! The birds were chirping and the sun coming up over the horizon allowed me to see the true beauty of nature in the world. By the sixth mile, even Monty could barely keep up with me! He’s so lazy sometimes. I need to get him into shape. I felt like I could’ve run forever.

When I got home I cooked up a great breakfast. Cage free scrambled eggs with soy milk, a fresh fruit salad, and a protein shake. It’s my favorite breakfast. I read the paper and shook my head at the state of the world. We really need to get our shit together. By the end of breakfast it was already 7:30! The day was really flying by. Monty took a nap and I told him he better shape up or ship out! No more doggie treats for him. He’s gained weight!

Next I organized three closets in my house. Boy did they need it! I color coded and alphabetized all the things I was giving to good will, and even sorted the things within the boxes into subcategories (kitchen appliances, tools, decorative things, shitty Christmas presents still in their packages, etc.) By the end of all that closet organizing, I found myself sneezing a lot. Ugh, so annoying. Allergies are the worst! But, I didn’t take ANY pills! You know what I did? Vacuumed my entire house. Then I went to the Sharper Image and bought one of those air purifiers. Since it was only 9 am the mall was virtually empty, so I did a little shopping for myself. A girl CAN’T have too many shoes, right? Girls out there, you know what I’m sayin’!

When I came home I took a wet rag and wiped down all the surfaces in my house, including furniture surfaces, baseboards, fan-tops, and counter tops. Then I made some herbal tea my best friend Sally gave me a while ago, which is supposed to help prevent cancer and is known to be good for allergies. By now it was 10:30.

Next I went outside and tended to my garden. I’m growing a bunch of root vegetables as well as tomatoes, squash, lettuce, and South African JuJu beans. I did some weed-eating and general maintenance. I even hand painted a sign out of some old wood in our shed that said “Mary’s Garden.” It looks great. Sometimes I think I should have been a painter. Next I went inside, hand-washed all the vegetables that were ripe from the garden, and made an incredible home-grown salad. But you know what’s even better than home-grown salads? Home-grown salads with friends!

Organic mixed salad greens in a white bowl. — DON'T worry. It's organic.

So I called up my besties, Sally, Cindy, SueSue and Peggy. Well, I know that’s only four, but I didn’t have enough veggies for ALL of my friends (too many to count) so I only invited those four. I love my friends. I have so many of them. And they all love home-grown salads! We talked about Chloe Kardashians new hair color (ew) and the crappy state of the world and how somebody really needs to do something about that. Sally and Cindy then had to go to their Jazzercise class but SueSue and Peggy were free so we all went to my favorite salon, got mani-pedis, and drank bubble tea! I’ve been feeling edgy lately so I painted my toenails dark purple. I’m so crazy sometimes!!!

By the afternoon I rode my bike to the farmers market to pick up fresh gluten-free bread and some other things that I can’t grow on my own. (One day!) I also bought some beautiful tulips that were being sold there. I decided they were too beautiful for any old vase, so I biked to a glass-blowing studio down the street to create my very own one-of-a-kind vase for them. Sorry, but none of the other vases would do! They’re sitting on my table now, and may I just say..DAMN. Pardon my french. Next it was time to make an appearance at an engagement party for one of my other besties and I wore my new 4 inch heels with my new dress. I also had the perfect set of hand-made earrings (made by yours truly) which couldn’t have matched any better. Not to toot my own horn, but, BEEP BEEP I was looking good! We drank wine, ate wonderful food, and it felt really good to stand around and talk to people about what they’re doing with their lives, tell them about mine, and then make tentative plans to get coffee and stay in better touch. It’s gonna be a busy social season guys, get ready!

Finally by 10:30 I was ready to leave. Call me a dork, but I love to get in my jammies and watch reruns of the West Wing before bed! (Rob Lowe, so hot. Don’t get me started.) Anyway I finally made it home, saw the tulips on the table, and remembered how precious life is. I have a great life. But boy am I sleepy! Tomorrow I have Hot Yoga at 4 am, so I better get some rest. Can’t wait to see what tomorrow has in store!!

HEALTH, ENERGY, AND BUBBLE TEA!

Mare

**Just to reiterate, this was all made up. I’ve been crashed the last few days. This was just an imaginative experiment in pretending. If I tried to go on an actual six-mile run I would vomit then die.

A Snails Pace

Published on January 10, 2012January 10, 2012 by Mary Gelpi20 Comments

I’ve been as productive as a sloth the last few days. Not sure why, but my pain has been worse than normal and energy has been low. Way low. Like non-existent low. Thus I’ve turned into a slow-moving snail, crawling from room to room wrapped in a blanket and moaning a lot. I’m sure I’m a real treat to be around. It may be recovery from the Holidays or the weather or the moon or it may just be that, hey, this illness doesn’t need a reason for you to feel bad. Even when you’re doing everything right, you’ll have poopy fart days. Luckily, I am jobless, so I let those days come and pass and rest until recovered. I still wonder what it would be like if I had my old job, and had to work an 8 hour day through feeling this way. I remember those days all too well. Then I get really nauseous at the thought and watch another episode of Frasier.

(For those of you out there still working with this illness, hang tough. I know what those days feel like. We’ll get there)

On days like yesterday, I have no desire to see or talk to anyone. My phone rings and I just can’t bring myself to answer. The feeling is rough because I am a social animal after all and love my friends and family a lot. But there are some things you just can’t fake. And when I’m feeling that way, there’s no faking enthusiasm. I’ve tried it and failed enough times that now I just don’t answer. The person on the other end would have a better conversation with Monty than me. Maybe I’ll pass the phone to him next time. I realize that this makes me, at times, a shitty friend, sister, grand-daughter, aunt. But I know how the conversation would go.

Hello? Hey Mary!! Hey. How are you!? Awesome. You don’t sound awesome. You got me. What’s wrong? Feel like death.What’s bothering you? Just really tired? Yeah, just really tired. Did you try those South African JuJu Beans I sent you? They’re supposed to be good for energy! No, too tired to stir the mixture. Bye.

green_coffeebeans_african400x3002_405 — South African JuJu Beans. P.S. I made this up.

See? Worthless conversation. And explaining my symptoms to people over the phone doesn’t help either, not to mention it makes me the Debbie Downer of the Century. I’d rather just hibernate until I don’t feel so lifeless. Whoever’s still around when I emerge from the cave are the people I call friends. Anyway yesterday was the National Championship and I was supposed to go to a party to watch it but since I was half dead I didn’t show up. Coincidentally the Tigers didn’t show up either. (BURN!) I watched it in PJ’s on the couch with Monty while icing my legs because they’ve been cramped for days. Then I scoured Facebook and laughed at the angriest statuses I’ve ever seen. “Completely Embarrassed.” “Time to FIRE LES MILES!” “Worst LSU game EVER!!!” “If we run the option again I’m going to MURDER MYSELF!!!” I don’t know why angry statuses humor me. They just do. Don’t hurt me.

Anyway, I’ve been receiving a lot of emails lately from people who are seeking help in getting diagnosed or who think they may be mis-diagnosed. I wish I were more an expert on CFIDS so I could offer real help but in the end I’m just a sick kid with two anatomy classes under my belt. (My mom on the other hand has a medical background and has suffered with the illness for over 20 years. I’ll get to that later) The most important thing I can tell you is there seems to be a key difference between Chronic Fatigue Syndrome and Fibromyalgia regarding exercise. It’s complicated since there is not one diagnostic test for either, but a main difference is that exercise seems to be helpful/relieve pain for many people with fibromyalgia. On the other hand, exercise can be extremely detrimental to those with CFS. An easy way to tell is just to pay attention to how you feel the day after you exercise. Having sore muscles is a normal reaction. If you are completely crashed, as in, feel like you’ve been hit by a truck and have trouble getting out of bed, you most likely have CFS, or the component which causes “Post-Exertional Malaise.” Trying to push through this ‘crash’ will only set you back and make you worse. It basically comes down to this. Do you feel like this the day after exercise?

Or do you feel like this after you exercise?

There is so much misinformation out there that I truly am surprised I was effectively diagnosed and treated. But this took years and didn’t happen until my mom found a specialist: Dr. Nancy Klimas. There’s also a lot of people trying to sell things that won’t help you. So be wise. Currently, there is no cure for CFIDS/Fibro. So be wary if someone offers you the cure-all. I’m going to attach some helpful links for those interested in reading further on the illnesses for now. BUT, I am ALSO going to collaborate with my mom on one of my next posts and try to clear the air about some things regarding ME/CFIDS/ and Fibro. I am also going to try to get my doctor in on the conversation because I know she holds a lot of vital information that is scarce and hard to find but would help a lot of people out. So stay tuned.

I’ve also received some emails that read “Hey, I’m tired all the time. Do you think I have CFS? How do I get diagnosed?” This question is kind of like the equivalent of asking “Hey, I gained some weight in my midsection. Do you think I’m pregnant?” For one thing, calling it ‘tired’ is like calling the atomic bomb a fire cracker. It’s hard to give it a word or name people can understand, but tired definitely falls short. Think more along the lines of bones-crushing fatigue. Anyway, while feeling like you could sleep for days and being extremely exhausted are key symptoms, they are far from the only symptoms. CFIDS is an autoimmune disorder, meaning every autonomic process in your body is basically haywire. Thus, you feel like death. And chances are you look like it too! Anyway, the links are below. But I promise to devote space in the future dedicated to debunking some myths and trying to spread accurate awareness about these illnesses. In the meantime, guess what? I’m tired.

Health, Happiness, and Hang In There.

http://phoenixrising.me/

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

http://www.pandoranet.info/

AboutMECFS.org

Guess What? It Get’s Better.

Published on December 31, 2011 by Mary Gelpi38 Comments

It was on this day one year ago that everything changed. And the change began with everything falling apart. One by one, the “solids” in my life unraveled like lazy yarn. It all started on New Years Eve, 2010.

My body was in what I like to call “Fail Mode” and I was at my parents house, feeling isolated and crappy. I was convincing myself that by that night I would feel well enough to leave, join the world in the celebration of a New Year and maybe even drink some champagne. Hah. Did. Not. Happen. By 5 pm I was sending out a very familiar text: “Sorry dude, I feel terrible. Won’t be able to make it…” If I had a nickel for every time I’ve said that phrase, well, you know.

That night I finally had a bit of a mental breakdown. My parents stayed up until midnight. At 12 they kissed and I looked down and saw Monty, so I kissed him. My new years kiss was with my dog. GREAT. I kept reminding myself that it was only a night, it wouldn’t last. By tomorrow, the party I was missing would be over, and so would all of this. For some reason, my mom couldn’t sleep that night and neither could I. I walked out into the living room around 2 am, saw her watching TV, and lost my shit. Through the tears I finally admitted to her how worried I was about my life. I hardly had a social life anymore. I was barely making it to work every day. Traveling was too hard on me so I had basically stopped. It felt like all I did was work and sleep. I had nothing left for anything else. Nothing left for the ‘good parts.’ Nights and weekends were often spent in bed, catching up. I felt out of control. The illness was in control, and that scared me. My mom counseled me through it the way she would continue to do for the next year. She reminded me I was young, that this moment wasn’t forever, and there was still a lot of possibility if I could only hang on. She was right. But hanging on is the hardest thing to do. At times this year it felt like I was sinking, and couldn’t see the bottom or the top.

elderly-fall-1306932535 — I felt like the "Help! I've Fallen and I Can't Get Up" lady

New Years Day I was no better. Everything hurt. I was heavy, dizzy, and nauseous. I would be stationary but feel carsick. Walking became hard. Too hard. I continued to get worse until Monday when I woke up and felt too fatigued to walk to the bathroom. That’s when I called the parents, they came to pick me up, and the gradual “move back in with the parents” began. Each day it became painfully more clear that I wouldn’t be able to live by myself anymore. It didn’t bother me so much at that point. I was too sick for pride.

I remember when my sister came to help out at the end of January and I told her I wished there was a fast forward button. “I just want it to be over.” She sat with me, said she wished for one too, but told me the truth. “It’s gonna be hard Mare, but we’ll get through it.” And now I look at the date and see, I made it. The crappiest year of my life, is about to be over. Hells yeah! Sometimes I wish I could bundle 2011 up in a big bowl of lint and burn it to nothing. The truth of the matter is it’s all theoretical anyway. January 1st is just the day after December 31st. It doesn’t mean anything, really. But our perspective changes. We make new plans, pledges, and goals in hopes for not a new life, but a better life. Even though it is just another year, and there’s a possibility it could be even worse than 2011, I am a romantic for the capability of change. And a new year holds great possibilities. It’s like buying a fresh new notebook. You don’t know what will fill the pages, but the prospect on the blankness excites you.

The truth is it’s about to be 2012 and my struggle is going to continue. I’m not all better. I am still jobless, still living with my parents, and struggling to maintain relationships. The challenges I faced in 2011 are still going to be there. My hope is though, that I’ve learned and suffered enough to manage what’s in front of me. Like my mom says, “Just do today.” I hope that I continue to grow, that I cherish what I have and not long for what I don’t. I’m looking at 2012 as the year of possibility. My only job is to stay open to it. And I think I can handle that. I think!

One of the best moments in 2011 occurred in a bathroom stall on my birthday. My friend Kaitlin and I walked to an ice cream shop on Magazine street. In the bathroom stall there were all kinds of scribblings and drawings on the wall, but my eyes went straight to a phrase written in green. Someone wrote this: “It gets better. I promise.” I immediately sensed my dad. Of course my dad didn’t write it. It was probably some stoner kid feeling wildly optimistic. But I think it was from him that I saw it. I felt it. And I felt better. I walked out holding on to the energy of the phrase. Because that’s what I felt from it; energy. It’s like the energy in saying “I’m going to die one day” or “I love you” for the first time. It’s wild. But it’s real.

Anyway, I wanted to share the dark times of this year but also the moments of relief. Because it wasn’t only grand gestures, it was also the very small things this year that carried me. Things as small as writing on a bathroom wall. In the moments where I was hanging on by a thread, I would grab hold of anything to get me out. Sometimes the only thing to concentrate on was my breath. So I’d start there. The most important thing to remember is that every moment passes. Today will be tomorrow soon. Tomorrow will be next month, and alas, the year will end. This year began with everything falling apart. The new year begins with everything reassembling itself. That’s the thing about things falling apart; they always get put back together, stronger than they once were.

Health, Happiness, and It Does Gets Better. I promise.

Happy New Year!