Category: Chronic Fatigue Syndrome

Prepare Yourself, This Might Get Sappy.

Published on by Mary Gelpi19 Comments

There were a few things I was going to write about this week. One was a response to an article that’s gone viral about why Generation Y is so unhappy. I almost wholeheartedly disagree with it, but I couldn’t finish. The second post was a “Breakup Playlist” that was really just a list of happy songs I composited that get me excited and I can’t help but dance to when they come on. And sadly, yes, a lot of the dancing I do these days is alone. But I enjoy it so lay off! The third was an observational piece about how impersonal life can be in the digital age of social media, where so many things are taken at face value and how someone’s online presence can be so far from the person they actually are yada yada yada. I began writing on all of these topics as my scattered mind couldn’t focus on just one, but there was something more important that kept nagging at me while I worked. Finally, I pulled the plug on these ideas. I’ll work on those later (unless they end up terrible which right now they are), because this post is for you, the reader. Because even though I sometimes have these grand ideas I I can’t wait to unleash, sometimes something else comes knocking and demands to be written. At that point there’s not a lot I can do except listen; type out the words and let my heart do the talking. There’s plenty of time for break-up playlists. This was something I needed to say now.

I’ll be honest, having a chronic illness, especially when it’s at its worst like it was for me most of last year, can be terribly lonely. As much as I love my friendships and romances and strong family bonds, it’s nearly impossible to keep them all up when you’re sick. One but more likely all of them will suffer. Last year the relationship I was in ended and as my health steadily declined, so did my social life. I remember just not answering the phone when it rang. I felt like I didn’t even have the energy to explain my mood, my condition, or apologize yet again for being a crappy friend or sister or whathaveyou. One of the hardest parts of the illness has always been what it’s done to me and the outside world. Last year was a dark one, but I was lucky enough to have family who took me in, and friends who were understanding when we went months without talking. I always liked that definition of a friend- someone who knows you but loves you anyway. :) I’ll say that being sick sort of dwindles down who the key people in your life are. Some survive the storm and some don’t, and it’s not really anything personal. Some people have needs you’re not able to meet with a condition like this, and truly you can’t blame them. I am an admitted flake, terrible at keeping up and correspondence, and I cancel at least half of the plans I make. This is mostly the fault of the illness, and it’s understandable why not many friendships are upheld through it. My circle is small, but I love everyone in it dearly, and they certainly love me back considering what they tolerate.

I think last Fall was one of the hardest times in my life. I was living in my sisters house in California. Home away from home away from home. I initially planned to go there for a month, but when my crash worsened and things like walking became hard, I ended up staying until Christmas, and everything felt out of control. Because it was. I was a difficult person then, and I feel a little bad for my behavior. My sister would always ask me to go eat dinner with her at my brother-in-law’s restaurant, but the thought of small talk with people I didn’t know was overwhelming. Sometimes it put me in a bad mood just thinking about it! I actually preferred being alone. I often felt more alone when surrounded by people but completely isolated on the inside. I hated who I had become–such a solitary hermit. But I truly just didn’t have the energy to even be polite. It was easier, and better I think, for me to just stay home. Which sounds terrible and depressing. Healthy people won’t get it. But truthfully relationships of any kind take work, they are two-sided, and I just didn’t have enough to give at that point. But the real reason I’m writing about this is because, beyond all the crappy days and reclusive tendencies, there was this community built on the blog. People reading it and commenting, people sending emails of gratitude or support or encouragement or all of the above, and it was truly remarkable to receive feedback like that, especially at a time where I felt really alone. I knew there were others like me and I wasn’t suffering alone. And although I didn’t know any of you truly, I knew of you because you reached out and were honest, and I read every word. It meant the world to have complete strangers rooting for me, some in other countries. It felt incredible not purely for personal reasons, but because I saw just how much positivity and love and support could be garnered by so many people who didn’t even know each other. It still gives me chills to this day; it shows what can happen when human beings come together for something good and optimistic. I think we’re all looking for a reason to be good. And while no, it didn’t cure me or fix all the problems, it did give me a real sense of hope that I could get better, that it wouldn’t always be like this, and even at times that if I never got better, this wonderful energy was still created and circling around the world. I didn’t do it, we did it. We put that out into the universe, and there’s something kind of magical about that. We’ve created some good together, and I think it’s something to be proud of.

Last week I posted about a promise I had made to myself years ago: that I would celebrate my 30th birthday in Paris. When I read people’s responses and support and encouragement for me to do something purely because it would make me happy and in turn, them happy, I felt the most love I ever have laying in bed and looking at a computer screen. Strangers telling me to go for it, that they’d donate money for me to do it, and insisting I go regardless of circumstance, was truly inspiring to me. I felt connected and after such a crappy year last year and feeling so far on the outside, watching everyone else live their lives while I felt like I was crumbling internally, that was such a powerful thing for me to feel. And needed to feel I should say. It’s easy to get stuck on your story, to live life from the outside looking in, to let things pass you by. But after seeing such a positive reaction from people, and seeing how me going after my dream and living with purpose was encouraging others too was simply unreal. But mostly, it was an inspiring and and abundant source of love to feel on my end. And that’s stuff you just can’t buy or put an amount on. It is truly priceless.  So for that I want to say thank you. THANK YOU. THANK YOU A LOT. I felt a very long time ago that this blog wasn’t really just about or for me. It was for something greater. And I know that now more than ever. It’s about all of us.

As summer turns into Fall, (unless you’re in New Orleans in which case it’s still 90 degrees and there’s a tropical storm headed our way) I am reflecting on where I was last year at this time. I had no idea that some of the hardest months of my life were about to unfold. And in the darkest of times, moments where I couldn’t find myself in the world, I would always come across the words in a comment or an email from a reader that reminded me of something very simple but very important– I wasn’t alone. And if you’re reading this now, going through a hard time caused by anything- health, heartache, loneliness, insecurity, whatever- I hope you’ll know that you aren’t alone either. It was in those very dark but small moments, that the tiniest crack of light would shine in and let me know, we truly are all in this together. We’ve all got our battles, and we all experience things that make us question who we are and where we’re going and if we’ll ever get out of the hard time we face. I’m here to tell you, you do. I did. Many times actually. And the hard parts aren’t over. I am relatively young and life won’t stop throwing boulders or pebbles across my path. (If you’re listening God, I prefer pebbles. But, you know, do what you gotta do.) I just feel that one of the most important things that could ever so slightly drag me out of the dark, was this interconnectedness I’d feel with humanity, even though I had no social life…at all. Granted my sister tried, but I was mostly a grumpy curmudgeon. Sorry Amelie! Anyway, things have gotten better. My health, while still a major hurdle, is not nearly as bad as it was this time last year. I’ve reunited with friends. I wear pants a lot more now. ;) But it feels good to know that while last Fall was let’s face it, a shit show, I re-emerged. As we all do and will, if we can only hang on, remember that nothing is forever, and as lonely as it can feel, we are never truly alone. I mean it. And I’m alone a lot!

So, that’s it. Among all my other ideas, this one wouldn’t leave me alone. And I want to tell anyone reading, I read every comment on this blog and every email regarding it. I don’t always respond (I told you I’m a flakey friend and terrible with correspondence!) but I honestly take time and read all the feedback sent my way. And I LOVE hearing from everyone. The funny thing is how many emails begin with “I’m sure you get thousands of these but…” I assure you that’s not even close to the case. A few a week at best!! All of you have your own battles and wonderful, sometimes sad, sometimes hilarious, stories of tragedy and triumph, and I relish in reading them. I wish there was a scientific or spiritual way for me to prove or convey this, but all of that positive and loving energy sent my way goes right back into this project and the world at large. It’s such a cool community we’ve set up here. Remember this all started with two followers: my sister and my aunt Amy. And look at us now! :) Thank you for reading, writing, laughing, and crying with me. The community we’ve built is invaluable, and I always turn to it when I feel myself leaning towards seclusion or sadness. I hope you do the same. Because half of writing anything is having someone to read it. I think we’ve done well. Again, a million times over, thank you.

momo
Monty was very excited to take this photo.

Health, Happiness, Merci.

*P.S. On September 26th, this blog turned two years old. Yaaay.

The Paris Promise.

Published on by Mary Gelpi19 Comments

Have you ever promised yourself a gift? Something unnecessary, something perhaps even excessive, but something just for you, from you?

When I was 22, I left America to study a spring semester in France. I had always been drawn to Paris– the French, the language, the lifestyle–but I could never pinpoint why. I just felt I needed to go one day. I became so philosophical about wanting to go there and not understanding what was fueling my desire that finally I called my brother Nick in a strange self-induced panic. “I want to study a semester in France.” “Great!” he responded. “But I have no idea why!” A pause. “Who cares?”

It was my freshman year, and I often called Nick with my college-born troubles. I remember him telling me with such sincerity, “Mary, don’t think to hard about it. You want to study in France, so study in France! You’ll know why once you get there.” He was correct. Three and a half years and a crap-ton of paperwork later, I packed two ridiculously sized suitcases and prepared for life abroad.

Technically, the timing couldn’t have been worse. I felt very troubled leaving. It had been one of the hardest years of my mom and I’s life. Just less than a year earlier my step-dad died suddenly, and everything sort of stopped. None of us were prepared for that. As if that wasn’t hard enough, a few months later my black lab Brusky, who had just turned one year old, developed an infection and also died suddenly. Brusky was one of the only positive things my mom and I could count on that year. When things became intense or overwhelming or sad, he’d always do something to make us laugh. He was truly a wonderful dog. He was my sunshine. And when he died that morning, I really felt forgotten. There was an empty feeling of chaos inside. I watched the world spin on but I felt stuck standing still. I was jealous of happy people. I was doubtful for our future. And I was losing faith that we could ever be happy again. It was partially the reason I went to France. At that point it felt like I didn’t have a lot to lose.

But I was the last kid left in Louisiana. Most weekends I drove home from school to be with my mom. There are so many logistical things to tend to after someone dies. Just cancelling his cell phone with AT&T took months and months. My mom always told me to stay at school. That I didn’t need to come home and that she’d be fine. But when you see a parent lose someone they love, you see a piece of them go too. She’s tough, and she rarely reaches out for help. And that was mostly the reason I went– so she wouldn’t have to. When I received the acceptance letter to a university in a small town in France called Besançon, I was immediately excited and then immediately distraught. How could I leave my mom at such a pivotal time? She insisted I go. Insisted she’d be fine. The last thing she wanted was for Roger’s death to hinder us. I grappled with the idea of staying and the idea of going.  Finally it felt like I had to go. If I stopped exploring, learning, living, loving, trying, then I’d have let fear and doubt and melancholy take over. We had to keep living, both of us, and maybe while I was gone, something wonderful could happen to her too. It didn’t make our goodbye at the airport any less sad. I held it together as best as I could, but still I felt the fear and the doubt and sadness right there on the surface. We hugged goodbye and I prayed all the way to Paris. It was the only thing I could do to keep my confidence alive in a decision that I wasn’t outwardly sure about.

Once in France, my brothers words rang true. Meeting amazing people who are still incredibly close friends. Watching the first snow fall. Cafe au lait and croissants and vin chaud and ridiculous business hours and cafes and little French children. It was perfect. All of it. I fell in love. With the country, with a boy, with my friends, and my life there. “This is why,” I thought. I’d found my answer. Something in my soul must have known I’d find happiness there, at a time where I’d forgotten what happiness even looked like. I lived in a space maybe half the size of my bedroom now with a twin bed and a desk, and I have never been happier. Best of all, I felt vibrantly alive for the first time in a long time.

Happy, oui.
Happy, oui.

Not only that, but while I was gone, my mom said yes to a coffee date, with extreme hesitance.  A friend convinced her it was only coffee and so she went. The coffee date turned into a dinner date. Which turned into an every meal date, and falling in love and happily ever after. Would that have happened if I would’ve stayed? We’ll never know, but I’ll always wonder.

When leaving after an adventure like that, you make a lot of promises. You think you’ll go back. You think you’ll stay in touch with everyone. You’ll carry on traditions. But these are more optimistic than realistic. The real world resumes on when you return. (It’s awful!) Although I made two best friends there, one of which is My Stupid Friend Jess, very few of us stay in real touch. We reminisce. We get sad when we think about the fact that if we all went back now, it wouldn’t be the same. Our experience was wonderful, carefree, spontaneous– but impossible to repeat. It was five and a half months of not living in the real world as we know it. School was very easy, teachers were lax. They encouraged you to immerse yourself in any and everything, and if that meant missing class, pas de probleme! I loved it. It was truly perfect.

But I did make one promise that I have always intended to keep. I promised myself that I’d return to Paris and celebrate my 30th birthday there. I’ve thought about this promise throughout the years, and I think over the last two years I’d sort of lost hope and resorted to the idea that Paris wouldn’t happen. But when I turned 29 this year, that promise seemed to reignite inside me. I realized it’s only impossible if I say it is. I have a year to make this wish come true. I have no idea why I made the promise for my 30th birthday. I probably assumed I’d be wealthy and successful by then. Hahaha!!! Life is funny.

So I’m not exactly wealthy and successful (yet) but I still have 10 1/2 months until my 30th. A lot can happen in that amount of time. I know that work is required of me. I know there is a way for me to have this illness but still contribute in a meaningful way and support myself and Monty and pay back all the debts I’ve incurred along the way! I truly think it’s possible. I constantly see items on TV or in magazines and think ah, when I’m a millionaire, I’ll totally have a temperpedic mattress and my own jet for travel so I’m not subjected to modern commercial air travel. They are fantasies, sure, but something tells me they could really happen. It’s not like this type of success doesn’t exist. It’s not impossible! It’s just going to require getting creative. Most people don’t make millions from bed, but it’s not that far off the radar. I mean the Kardashians did it!

Anyway, I don’t have the money yet but I haven’t aggressively tried to get it. I’ll need to strategize. And maybe I won’t be in great health, and it will be different than last time and I won’t be able to walk the city as freely. But I’m going to turn 30 no matter what. Here or there. And if I’m sick here, why not be sick there? I don’t mind being sick in Paris! And if it’s just me, alone on a terrace, watching the Eiffel from afar, that’s great too. As long as I am choosing life, and honoring my passions and keeping my dreams alive and not stifled, I don’t think I can really go wrong. I don’t know how this is all going to fall in place, but somewhere deep, someplace where I once felt that initial drive to go and didn’t know why, I feel that it will happen. And if I keep letting the illness infringe on every dream, I’ll never get anywhere. Things will stay the same. And  once you stop dreaming, what is the point really? This was a promise I made to myself. Not for a boy, not to prove anything, just a gift I promised to my soul. Last time I left, it was a troubling time and I was uncertain, but once I arrived it all made sense. It appears to be that way again.

The only question left to ask? WHO’S WITH ME?!   :)

La Santé, Le Bonheur, et La Promesse

 

Love and Let Live.

Published on by Mary Gelpi5 Comments

I’ve neglected my writing routine for a solid few weeks and I attribute that solely to distraction. One particular thing. A person. It’s a person.

That person is Rob Lowe. Just kidding, it’s not Rob Lowe. But that’d be a funny anecdote wouldn’t it.

Unfortunately or fortunately, I have to be alone to write. (Duh) Very alone. And by that I don’t mean lonely, although it can get that way. But even someone in the next room, doing something else, watching some movie, talking on the phone–it all feels exponentially more important that I be a part of their experience in the other room, even if it is just watching Robinhood Men In Tights which for the record, I’ve seen. But someone being over there and me being over here smells something like missing out, and as a full-fledged youngest child, I’ve lived 29 years trying to avoid just that. I think all youngest children do.

I’ve been spending time with my unofficially official ex-boyfriend/boyfriend/best friend/comrade/casual dating kissing partner. And we spoon too. It’s all very simple. We’ve known each other ten years and been through a lot including tumultuous breakups and taking turns carrying one another. We’ve been through things that either harden you or strengthen you and somehow rounded out in the middle. It seems to me we’re on the same learning curve. It’s the only way I can explain how after so many ups and downs we still seem to find one another, each wiser from their mistakes, and seeing in each other something that has always been there. Of course maybe all this is way too analytical. Maybe simply he was my first love and I was his and some part of that just never goes away. Regardless, he went away this morning on an adventure. The kind people talk about but rarely actually embark on.

photo-79
Life in a Bag.

He packed his life in a green hiking backpack and is starting out in Nicaragua– and that is about as far as his plans go. One of his plans involves staying and working at a hostel near Leon, where he will lead expeditions to the top of a volcano and then get down by surfing down it. I remember I was eating yogurt in my pajamas, exhausted after doing something undoubtedly small and stupid, when he told me that plan. I laughed a little as I envisioned his day versus mine while taking another bite. “Our lives are so different.”

In that way he’s kind of my hero. For one thing, he’s been blessed with a body that works and he is using it to his advantage. Pushing it, training it, challenging it and paying very little. He is strong and coordinated and a fast learner. This is of course something I’ve been unable to keep up with him on. And that’s OK. I’m learning to be content from the passenger side. I’ve actually come to enjoy and take pleasure out of watching people do what they want and go on adventures and seek what makes them happy. You don’t need to be strong to do that. At a fundamental and simple level, this is where human beings can be very wonderful additions in each others lives. If we merely nudge our friends in the direction of happiness, we’ve at least done something.

It’s funny such a thrill-seeking adventurous soul would ever have any attraction to the sick bag of bones called me. I guess I wasn’t always this sick, but still, life with a chronically ill person can be slow-paced and sedentary and a downright pain in the ass. But I guess all of life isn’t a thrill. At the end of the day whether you surfed down a volcano or not, you need a good snuggle partner and I am a pretty DANK SPOONER YALL.

hehe
hehe

He doesn’t know how long he’ll be gone. At least six months, or until the money runs out. We made no real plan of contact or correspondence. I know that this is an adventure he’s going on truly with himself, and he should be free to explore everything along his path. No ties or obligations to the homeland. Clean slate. But on the way to the airport I felt myself squeezing his hand tighter than normal. I guess that’s to be expected when facing the unknown.

Then I had that all too-human experience of returning to a house after an airport-goodbye with that hush all over and the remnants of someone in all the rooms. It’s all a little quieter and things feel hollowed out; you know it’s the start of something new whether you wanted it or not. At the same time, my own adventure is beginning here. Now that I have my solitude back, I have to get to writing. And reading. And arts and crafts And following my own glimpses of joy. It may not lead me to volcano surfing but it could get me somewhere close. Like healing yoga or gluten-free breakfast cookies!

Anyway I never much write about my love life, or lack thereof, but it all feels sticky in my brain and I am hoping that by releasing this feeling I can continue on with other endeavors. I am happy for my friend who is following his bliss– and Gator if you’re reading, be careful out there! If you died out there I’d be really annoyed. I know I have to let go and I need not to lose myself in someone else’s tales. For a while there I was getting so caught up in his life I was forgetting to tend to my own. Marianne Williamson says most of our problems stem from forgetting who we are, and that rings so true to me now. Time to move onward. Time to live and let live.

Health, Happiness, Forward.

The Great Indoors

Published on by Mary Gelpi8 Comments

I’ve spent most of this last week in bed, or in and out of sleep on respective furniture that I turn into a bed. But mostly in bed. During crash periods I have a lot of time to sit around and think and do nothing. And while “doing nothing” sounds a little worthless and at least a little depressing, I’ve gotten pretty good at feeling bad. That is, I’ve found ways not to succumb to complete boredom while spending my days and nights in the supine position. But I have to be decisive and proactive when it comes to mental stimulation. It’s easy to do nothing and think nothing and waste away hours watching cats on the internet. I’ve done a lot of that too.

fartheraway
.

Currently I’m reading “Further Away”– a book of essays by author Jonathan Franzen. It was given to me by my brother Nick, who wrote on the note inside to add it to our virtual book club. Nick and I don’t live in the same city and considering how poorly I keep in social contact even with people I care most about, we don’t talk so often. But we have similar taste in things and it’s true that I trust any literature from him will be enjoyable. Like the others this one doesn’t disappoint. I gave him the book “Why Does the Universe Exist?” and said it might be a good starter for the club. Nick is a full-time professor of architecture with multiple side projects and is a husband and father. I’ll be impressed if he has the time to finish it. I have nothing but time but in retrospect, I can think of at least three books in the last year I’ve simply left unfinished with less than 100 pages left. For whatever reason– It might be a commitment problem on my end. Because oddly enough I enjoyed the books I left undone. (Except 50 Shades of Grey. I just couldn’t do that one, even from a humorous standpoint. It was just so bad.) At any rate, I like that we’re trying. I know I need to read more and it is truly one thing, a gift even, that I can do whether or not I’m sick. I could read for hours and feel somehow refreshed at the end. TV and the internet are bottomless. I could be dead tired but watch more, click more, disengage more. It’s far too easy to fall in and at the end I never feel great. I’m like where am I? What time is it? How long have I been watching Tosh.0? I don’t know how many times I’ve watched the Kardashians and rolled my eyes thinking to myself that it’s the stupidest show on TV. And yet when it shows up on the guide, I almost unconsciously go straight to the channel. It’s like mindless auto-pilot in the way of my brain. I think it’s their hair that keeps me coming back. It’s just so pretty.

Speaking of the Kardashians, did you see the photo of baby North West? I think she’s cute. Wait, why do I know what their baby looks like? Because if you watched TV or were on the internet yesterday, it was everywhere. As well as mass hysteria about Ben Affleck becoming Batman. Maybe that says something about the places where I get information. But it also says something about the things that gain momentum and attention and a dialogue. Meanwhile, my state is sinking. I don’t totally understand the nature of a sinkhole. Except that I’m pretty sure it’s unnatural.  And it’s a problem when entire trees are being swallowed whole. Something about salt domes? But why take the more effort-requiring time to find out when I could just look at a tumblr that makes fun of what Kanye’s baby looks like? It’s so easy to just lay back and look at what’s easy to look at and make fun of what’s easy to make fun of. But it’s not very wise for someone like me to do too much of that. I constantly have to remind myself to be careful with how I spend my time. I truly have a lot of it.

Anyway, maybe by the next post I’ll be much more knowledgeable about sinkholes. Or I’ll have a lot more photos of baby Nori. Anyway, I’ll continue my quest to be at least a half-way informed citizen and spend my horizontal time wisely. I love being outside but on weeks like this one, I’ve mostly been inside which can be wearing too. But don’t get me wrong, I’ll still watch internet cat videos because come on, that stuff is funny. And laughter is important. And if we spent all our days indulging in bad news we could succumb to despondency and boredom just as much as if we watched TV and internet videos nonstop. It’s all a balance and I’m always in search of the middle. So far, 29 has been just fine.

Health, Happiness, and Wouldn’t You Think Sinkhole Would Be Two Words? Me too.

The Eighty Year Old Twenty Year Old

Published on by Mary Gelpi13 Comments

How come no one ever warned me about how hard your twenties are?

Well first, let me say hi. I returned last week from a medicinal tour of America. Yeah! I had to see my doctors in Colorado and Miami–Which means I had to take part in modern American air travel which means I felt like crap a lot. I went to Colorado and felt absolutely terrible the whole time I was there. The funny thing is, despite feeling awful, I had a really great trip. I stayed with my grandma at her assisted living residence. But judging what my days were like and what her days were like, you’d guess I was the 83-year-old and she was 28. She lives a very active, involved, and social life. She wakes up by 5 and it seems like she doesn’t stop until she sits in her recliner chair at night. She can hardly keep her eyes open through the news. Me, I slept mostly. She brought my food at normal food hours and finally after being completely fatigued and short of breath for 3 days, my uncle Mike hooked me up to her oxygen tank she uses at night.  So I looked like this most of the time.

 

Air please thank you.
Air please thank you.

The extra oxygen helped, but I was still out of sorts the whole time. Weak, Dizzy, Fatigued Yada Yada Yada. Luckily my grandma is one of the easiest people to be around. We talked a lot while I was there. I love hearing her stories. I love how happy she is at her age. I love that grandmas exist. I used to fear growing old, but watching her, I don’t anymore. In fact, I’m ready to stop being young and stupid.

I ask about a warning I never got because this Saturday I will turn 29. The last year of my twenties. It seems typical to freak out a little when the big three-oh approaches on the horizon. I sense that a bit. But at the same time, my twenties have been really hard. And nobody warned me! Though I don’t know who would, and it wouldn’t really make a difference would it. There’s been tragedy and heartache and some things I didn’t think I’d find my way out of. But, alas, I survived. I laugh because the more people I ask about their twenties , the more I hear people say that those were some of their toughest years. In fact most people said their 30′s were great and my grandma insists your 40’s are the best. Hers were anyway. I don’t know what makes them so, tortured, your twenties. Mine have felt mostly uphill. You know how babies go through the “terrible twos”? Well maybe your twenties are the adult version of that. I think it’s an odd time. You’re no longer an adolescent at all, but the college experience isn’t quite a real-world experience. I went to a University of 30,000 people, but still, it felt like a bubble. After leaving, it felt a little, anti-climatic? It’s like you’ve got all these credentials to prove that you’re an adult now, and the world expects that from you. But there’s still so much to figure out. Then again, I guess everyone is still trying to figure it out. The most important thing is to figure yourself out. I guess by your 30’s you’ve got a pretty good grasp on who you are, and that makes things easier in general. Have you ever hung out with someone who is unsure of themselves, who needs approval for everything? It’s exhausting, and it stems from not having a good hold of themselves. Sadly, we’ve probably all been there. I have to say that not really having my own home or my own money sort of stripped down my identity. I had to start over in a way. It was humbling but it also helped me get to know myself better. When you lose all these external things, it forces you to go within.

Then again, I can’t deny that my twenties had some amazing parts to it. I fell in love for the first time. I lived in France. I published my first article. I traveled and I made incredible, life long friends. I wrote a blog that became bigger than me. It’s had its perks. But I must admit, a part of me is banking on it getting a little easier in my 30’s. Like I’ll really get to enjoy all the wonderful things I’ve gathered with me along the way. A girl can dream.

A few days ago, I found a journal that my dad kept. It feels like I found lost treasure. Of course it’s always extra special when you’re reading someones written words after they’re gone. I read it with such a sense of wonderment. I was only 12 when he died, so I wasn’t really able to experience who my dad was an adult. I feel sad to have missed out on it, but at the same time, reading this journal has helped me to know the man I wasn’t able to know as a kid. I admit I completely idolize my father. It’s easy to do–he was a wonderful person and anyone who knew him would tell you that. He was a lot of people’s best friend. I’ve only ever heard of the wonderful things he did and the amazing person he was. I remember him yelling only once, and that was at my sister for not eating the disgusting buckwheat pancakes he cooked for breakfast. That night he bought her yellow roses, apologizing for having gotten upset.

In other words, he was Mother Theresa. And I often wonder if I am living up to how good he was or how generous he was. Furthermore, I compare other people to who he was, setting a really high bar particularly for the men in my life. Which is for the most part, good. It’s fine to have high standards. But sometimes I wonder if the bar is set so high that no one could live up to it. I need to remember that my dad was still human. He got upset sometimes. He judged people sometimes. He even cursed at our dog Bacchus while throwing rocks and chasing him down the street in his suit and tie. He slipped up like we all do, and I need to remember that. Reading the journal has brought to light the very human nature of my dad that I sometimes forget was there. The best part was, in the journal he describes each of my siblings and me and what makes us each unique. There on the last page were his words about me. Reading them was such a gift. It felt like I was sent an early birthday present, from somewhere over there. :)

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Anyway, I’ve become a little distracted. I try to write but I just feel more an urge to read.  Which is OK so long as this doesn’t turn into a writing breakup. I need to stay focused. But it’s been gloomy and grey and rainy out–so it’s perfect read and nap weather. Know what I mean jellybean? Anyway, all this reading and napping jazz has me worn out. I’m off to dream world.

Health, Happiness, Twenties.

To Be a Girl.

Published on by Mary Gelpi12 Comments

I must admit, I really love being a girl. I’m not sure most people would know that considering a few things. I’m not overwhelmingly feminine. I don’t officially dress the part that often. And my manners slip up a lot. Maybe I’m thinking more about what it is to be a Southern Girl, but I love being that too, even though I know I don’t always do the South proud. Still, it’s in me. And I like that it is.

A disappointing factor in being sick is that my wardrobe has taken quite a hit. I used to work 5 or 6 days a week, and I enjoyed putting together my little corporate outfits each day. It always felt like a part I was playing anyway, so I took time for the appropriate costume. There’s pride in getting dressed for work each day. Even if it was a crappy day– bad weather or crappy co-workers–whatever it was, there was still some amusement in dressing each day. Looking my best. It was some part of the job that I could control. And I indulged in looking good and smelling good and hearing my heels click on the gallery floor. There was some identity, among pride, in the ritual of all of that.

Now I don’t have somewhere to be 5 out of the 7 days a week. I don’t have to wake up at some ridiculous hour–which let me be clear, I don’t miss in the least. And while I don’t miss hitting the snooze button 6 times before forcing myself out of bed and dragging myself to the shower, I do miss the ritual of working. The wardrobe it required. The pride in looking good and knowing your purpose and getting a paycheck every two weeks. Clear parameters. Certain expectations. Consistent and adequate wages. I realize that while you’re working it’s not uncommon to be fantasizing about not working, because that grind–it’s a lot. Every day. All day. The same people. The same setting. It can be overwhelming in its sameness.

While I did enjoy the ritual of working, I knew I couldn’t stay there forever, mostly because it didn’t do a lot for my soul. The work was not a challenge creatively in the least. I told myself that I could work full-time and do my creative work on the side. I could write and draw at night or on the weekends, but I was so dead at the end of each day, so spent by the weekends, I always spent them half-conscious in sweats watching mindless television or attempting to write but tiring out quickly. Maybe some could do it, but it was certain I could not. One day I would have to leave that job if I wanted to explore the more creative life, but I never thought it would be involuntary. It was–due to my health. I wonder how long I would have stayed there had it not been.

Anyway, now I am sort of living the creative life. I follow my inner-self a lot which is a privilege, I admit. I’ve learned songs on my dads guitar. I paint watercolors when I’m bored. I watch French movies to brush up on my French. I write. I read. I rest. Repeat. I think it would be easy to look at my life from the outside and say it looks easy. And to an extent it’s certainly easier than my scheduled life I used to lead. There’s no calling in sick or feeling guilty about not performing well. But also, there’s no paycheck. No official schedule to follow or tasks to complete. But I have a feeling those things will come again.

It’d be easy to fall down the black hole of daytime TV or something more depressing. I work hard to keep things moving. To strike when the creativity is hot. To find newness in each day. I consciously work to keep my life from going to stagnant–that’s where a girl could get into trouble.

Since my new life doesn’t require any certain wardrobe, I often joke about the clothes I wear and my general appearance. Not to mention, the whole showering and routine that follows deal totally exhausts me, so it’s often a matter of energy reserves. I used to be so polished. Now I leave my hair curly and wild and am wearing a stretch cotton tank top with a cat wearing sunglasses on it. This of course is acceptable, as I don’t really have visitors or male suitors. Haha. But still, as much as I have to strive to keep my life moving, I think I need to remember that I am a girl and I can look pretty when I try. And I really enjoy smelling good. I don’t have official reasons to make those things happen anymore, but maybe just being a girl is reason enough.

Like last night, I painted my nails this bright red. And it really thrilled me. Red nails! The thrills of being a girl!

Glamour on a Tuesday.
Glamour on a Tuesday.

Laughably I take pride in being able to give myself a manicure comparable to the professional ones. Since I’m broke I can’t afford those things, but I can do them myself and so I do. I also bought this knock-off gold watch for $20 dollars which I really enjoy wearing. The best part is it fit perfectly, I didn’t have to remove any links. It makes me feel glamorous, with these red nails and lipstick too. Sometimes when I’m feeling good, I take really long bubble baths, I spend a long time doing my hair, I put on full makeup, and I spray myself in perfume. And then I go nowhere. I strut around my house like an idiot, just like it used to be–a girl playing dress up. Or I pretend to go somewhere and take photos like these:

Here's Monty and Me and the Eiffle!
Here’s Monty and Me at the Eiffle!
And here we are at the Aquarium!
And here we are at the Aquarium!

Monty gets nervous because it’s gotten to the point where if I put on pants he knows I am probably leaving. But I don’t leave. I clean the house. I indulge in the mirror. And still, even though I have nowhere to go or no one to see– I revel in being a girl. If even just to remind myself that when I try, I can still be one. One day I will have places to be and people to meet and parties to attend, so I’m just making sure I still know how. How to be polished. How to walk with poise in heels. How to look the part. How to be a girl.

Health, Happiness, Remembering.

Tired Writer Fighter.

Published on by Mary Gelpi9 Comments

It’s raining. And whenever it rains it feels easier to write. So I’m forcing myself to sit down, because lately, the words haven’t come as easy. I have this recurring nightmare type of thing, although it doesn’t come at night–it’s more a dull anxiety beyond the curtain in my brain- that one day I’ll wake up, and have nothing left to say. Nothing left to write. None of my ideas will be new. Whatever creative juices that used to run through me will have all run dry and I’ll be sitting there, blank pages in front of me, and have nothing. left. to say. Luckily, that day is not today. I have some stuff to say I guess.

The funny thing about my little recurring nightmare, is that ironically, the only way to avoid it is to keep on writing. The longer I go without doing it, the harder it becomes. Sometimes I cringe at what I’ve written, and I’ve deleted entire pages of text that just didn’t seem to “do it” for me. But this is my art form and I care about it. It isn’t really a hobby I do on the side anymore. It is my principal work for now and once you’ve come to care this much about what you do, you really have to nurture it or it will fade. Like a marriage of sorts, or any relationship at that. The interesting part of it is that continuing to produce only gives way to more creativity and newer ideas. Not the other way around. It’s not some finite jar you reach the bottom of. My nightmare is possible I suppose, but more likely from me having abandoned the work, not from literally running out of ideas.  If the universe is infinite than it’s true, our ideas can’t run dry.

I have to remind myself pretty regularly that whether the words come easy or hard, to just keep going. If you give in, well then what kind of a writer are you? I think beyond your final product, being an artist is in the way you live and in how much you give of yourself. Not just when inspiration comes but also when it doesn’t. There is debate in the literary world on whether or not writers block actually exists. I can say that without a doubt, there are times when it’s easy and times when it’s alarmingly difficult, but I think the point is that you just keep plugging away. It was Picasso who said that inspiration exists, but it has to find you working first. You can reject entire pages later if you need to, and there’s no harm in discerning good work from bad work even if a great majority of it is bad. It’s nothing you can hurry or fake or force. You just have to keep working humbly and the right words always find their way out. Think of Michelangelo sculpting his masterpieces like David. He said it was his job to carve away the excess, chip away at everything that wasn’t David until David emerged.

I know that the worst I can do now is let a gift pass me by. In stillness I know that being capable of writing is not something I own but something that was given to me. And I feel that by not putting it to use is letting someone down somewhere. I fight lethargy. I fight distraction. I fight excuses. It’s been a while since I’ve really sat down and put my words to use. And I have to remind myself everyday that very easily I can let all this slip by me. It takes commitment and participation on my end and sometimes I actually have to talk to myself out loud and force myself to move things through me. I do this because it’s not about me. It’s about something bigger and longer-lasting than me. And I don’t know what that is yet. But I know I have to keep at it. And I guess on this rainy Thursday, I am being reminded in more ways than one to keep going. Keep writing. And someday the pieces of it all will begin to make sense. Carl Jung said the details of his life would only make sense in the context of the centuries. Maybe that’s the ticket.

Health, Happiness, Work.

Tiny Little Worlds

Published on by Mary Gelpi13 Comments

Most mornings start out the same for me. My eyes peel open slowly like velcro. My insides feel like they want out. Everything feels out of balance. I throw pills in my mouth, make my pot of coffee, let Monty out, and wait to feel human again. It isn’t the best…mornings have always been the hardest. But roughly an hour later, I start to feel better. The pain subsides. The disoriented, dizzy haze fades, and I sip coffee slowly and let my thoughts organize themselves. Once I’m human again, Monty starts making noises that imply if we don’t go outside and play in the pool soon he is going to explode or implode or something of that nature, so we go. He jumps in immediately, I sit in the water on the first step, and the day really starts. I’ve come to love our routine. It feels good spending so much time outside. Especially after a year of feeling  so imprisoned to the indoors. Lately, the last step of morning involves saving frogs from the pool. They are really tiny; cute actually. Usually there are at least 5 of them. I try to keep them together, like they are some kind of family I’m rescuing and I don’t want the children to get separated. I have no idea why I feel this obligation to save them, but I do, and so I do.

small friends.
small friends.

They are such incredibly small animals, sometimes I just watch them. I feel bad when I find a floater who didn’t make it. I scan the sides of the pool twice where there are usually one or two and then the two round filters that catch the extra debris. I then usually carry them to the nearby ditch so they can hangout in natural water. Last night, Monty was muddy so I walked him out to the pool to clean him off, (this is now what we consider bath time) and when we approached I heard a loud splash of something that jumped in. When I looked in the filter, a huge frog was in there, spinning from the pump circulation. Certainly he would have died in there. The steps are too deep for them to jump back out. I took him from the filter and released him in the garden, and told Monty to be gentle as he sniffed up close after every hop he took. Then I played “Folsom Prison Blues” to him on my guitar because I learned that song recently and it’s really fun to play. And what’s the frog going to do? Walk out on my concert? Come to think of it that is what happened, but you see my point.

Anyway, it’s interesting to look at such physically tiny life that we normally never see. There’s plenty around here. Including wolf spiders that are INSANELY large and terrifying-looking, but ultimately harmless. So when they’re inside I catch them in plastic cups and throw them outside, basically screeching the whole time because if it escaped the cup and crawled on my hand I’m pretty sure I would pee myself.

Dear God.
Dear God.

There is a huge variety of birds; there are mice and turtles, spiders and lizards, and even these tiny bunnies that Monty chases away. I like watching their world. Something about it makes my problems feel smaller, and I don’t know what the explanation is for that.

Snapper?!
Snapper?!

Anyway, I really don’t like killing anything alive. Especially because I don’t feel like they are in my territory but that I am in theirs…and it seems so pointless to kill them. There was a time I wouldn’t mind killing tiny things, I think. But now the idea doesn’t sit right with me. (Except mosquitoes, screw them.) So I catch them and release them. Save them from the filters. If anything, it helps me feel like I’ve done something. There are many stationary days. Sleep filled and cloudy. It makes sense to save something from drowning if only because I haven’t done anything else that day. I don’t have to, but I can. Might as well save a frog or five.

Health and Happiness and Little Tiny Worlds

Frog on Shades.
Frog on Shades.
new frenz.
new frenz.
finger frenz.
finger frenz.

Fame or Peace

Published on by Mary Gelpi4 Comments

I’ve read this excerpt of Marc Nepo’s book at least a couple of times. I know this because I’ve underlined some things in blue and starred others in black–And even this morning while reading it for what is evidently the third time, I still felt inclined to mark parts of it. So I thought I’d share the whole excerpt here, because it really speaks to me, and I think it will to you too. Here it is. Have a beautiful day.

Rather the flying bird, leaving no trace,

than the going beast, marking the earth

-Fernando Pessoa

Much of our anxiety and inner turmoil comes from living in a global culture whose values drive us from the essence of what matters. At the heart of this is the conflict between the outer definition of success and the inner value of peace. 

Unfortunately, we are encouraged, even trained to get attention when the renewing secret of life is to give attention. From performing well on tests to positioning ourselves for promotions, we are schooled to believe that to succeed we must get attention and be recognized as special, when the threshold to all that is extraordinary in life opens only when we devote ourselves to giving attention, not getting it. Things come alive for us only when we dare to see and recognize everything as special. 

The longer we try to get attention instead of giving it, the deeper our unhappiness. It leads us to move through the world dreaming of greatness, needing to be verified at every turn, when feelings of oneness grace us only when we verify the life around us. It makes us desperate to be loved, when we sorely need the medicine of being loving. 

One reason so many of us are lonely in our dream of success is that instead of looking for what is clear and true, we learn to covet what is great and powerful. One reason we live so far from peace is that instead of loving our way into the nameless joy of spirit, we think fame will soothe us. And while we are busy dreaming of being a celebrity, we stifle our need to see and give and love, all of which opens us to the true health of celebration. 

It leaves us with these choices: fame or peace, be a celebrity or celebrate being, work all our days to be seen or devote ourselves to seeing, build our identity on the attention we can get or find our place in the beauty of things by the attention we can give. 

Health, Happiness,
1348638108_peace-sign-coloring-pages-31

Wisdom In the Day Lilies

Published on by Mary Gelpi11 Comments

I’ve been pretty taken by these Day Lilly flowers blooming outside. I like that their entire purpose (for me) is just to be something delightful to look at. To be simple and beautiful reminders. It took years and years of me hearing the term “Day Lily” being thrown around as merely words assigned to a flower to one day, just last week, finally putting it together that they are named this way because they bloom for merely a day. (Duh.) They are such vibrant and roaring things. They’re like little poems themselves that don’t require writing. Flowers often strike me as delicate but these specifically do not. They’re almost unruly. They are stunning colors and you’ll find yourself lost looking in their center, unaware of time. Tolle refers to flowers as “Windows into the formless” and that makes sense when looking at these lilies. They’re incredible creatures, and they only last a day.

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If you’ve never read Eckhart Tolle’s A New Earth, he begins the book with a description about the first flower ever to bloom on our planet, and why that is important to our existence and collective consciousness now. It’s quite a beautiful passage. So here it is:

Earth, 114 million years ago, one morning just after sunrise: The first flower ever to appear on the planet opens up to receive the rays of the sun. Prior to this momentous event that heralds an evolutionary transformation in the life of plants, the planet had already been covered in vegetation for millions of years. The first flower probably did not survive for long, and flowers must have remained an isolated phenomena, since conditions were most likely not yet favorable for a widespread flowering to occur. One day, however, a critical threshold was reached, and suddenly there would have been an explosion of color and scent all over the planet– if a perceiving consciousness had been there to witness it.

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I really love this description and the image of such a large, simultaneous blooming. But the deeper point he goes on to make is that flowers were most likely the first things human beings came to value “that had no real utilitarian purpose for them–that is to say, were not linked in some way to survival.” He attributes our fascination with flowers to their ethereal quality, calling them “temporary manifestations of the underlying One Consciousness.”  Since a flower is a glimpse into the formless, and ego is described as “identification with form” (materialism, i.e. I am what I have) we can say that the simple act of looking at flowers is an opportunity for us to see with our soul and not our eyes. To drop our egos for a moment. Physically the flowers are beautiful, and underneath they represent the joy of formless beauty. You don’t have to “own” a flower to enjoy it. It’s interesting too to witness how the entire atmosphere of a room can change once you put a vase of real flowers in the center. Or even one flower in a small vase. Somehow, it makes a difference. It changes things.

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To think about beauty and purpose in terms of time, it occurs to me that only humans would consider a day not long enough for something to exist. If we were told we could be beautiful and happy and perfect, but we could only last a day, would we take on the endeavor? It seems like we’d demand more time–enter some boardroom negotiation with the creator. And yet, some of us exist on earth for only a little while. There are so many lives cut short, and as survivors we see it as indecent. It feels, to us, like they were never given a chance. They were never able to really live. But maybe, like the day lilies, one day of life is more than enough time for us to serve our purpose. It’s hard to grasp conceptually. Time is something my mind busies itself with at night–until I think of the concept of eternity for too long and the thought becomes too intense and my brain explodes. It’s pretty frustrating, you can imagine. Gary Zukav once described life in terms of time as “the eternal moment” and sometimes that makes perfect sense to me and sometimes it’s not enough. It’s almost too simple. But that’s how I imagine a lot of the secrets of the universe to reveal themselves. Complex, large ideas executed very simply. Maybe the better word for it is elegant. 

Maybe I’ve made some far-reaching metaphors here. The truth is, flowers are pretty things to look at mostly, and possibly I’m ruining their beauty by cluttering them up with philosophy. But it’s an interesting investigation to discover why we as humans, often so entrenched on utilitarian things, furthering our purpose, working harder and faster and longer, can every once in a while stop our busy lives and look into flowers and feel a sense of ease and simplicity. We may smile looking at them without even knowing it. It’s interesting that in our modern society, flowers have come to serve the purpose of a wide spectrum of emotions. They’re a way to say “I Love You” and “I’m Sorry.” We use them to celebrate life and death. It’s no mystery why people say “Stop and smell the roses.” Flowers are small and silent, their scent often subtle–requiring you to drop everything and stick your nose right into the bloom to really take it in. I think once I just thought they were pretty things to look at and that was all. But I’m finding more and more that simple and beautiful things, selfless providers, (flowers, dogs, sunsets) are much more in tune to our purpose here and the work we do. If ego is the blueprint for dysfunction like Tolle says, perhaps flowers are the blueprint to consciousness. If even just for a day.

Health, Happiness, Day Lilies

*I took these photos on my iphone and they haven’t been enhanced. For realsy!

Today Is Wednesday.

Published on by Mary Gelpi10 Comments

Today it is hard to wake up. It is hard to move my fingers and hold this pen. Everything is heavy as though my insides are all made out of lead. If you’ve ever tried running underwater in the deep end of the pool, then you’ve had a glimpse of it. It’s hard to say why my body has backtracked these few days. Last week felt like a good one, more solid than the past, and this week things fell apart. Did I get too sucked in? Did I overindulge in the tasks of the busy world? The fast work. The chattery world. The one that I used to think didn’t have room or time for the sick?  (I’ve changed my mind on that one.)This is often the culprit–engaging in too many things that in the end don’t really matter.

So now I will rest. I will sit in the room with the big windows and let the light in. The dishes will wait. Paperwork will wait. Even Monty will wait. Every once in a while he’ll get a burst. He’ll paw at my chair- but behind his brown eyes, sometimes so deep and intense I wonder where his mind is- but he knows that today will have to be one of rest. He curls into the half moon shape at the base of the chair, back to doggy-chasing rabbits-gratuitous bacon-dream world. I apologize and I don’t know if he understands or cares, but he is a creature of the present and for that fact alone he doesn’t seem to mind. It isn’t in his DNA to mind. When we rest we rest and when we play we play and there’s no good reason to cry or complain when we’re doing one and not the other.

Even though it’s a sick day, a string of sick days that always has the grim potential to turn into months of sicks days, I want the world to know that it doesn’t feel like suffering. It just feels like something the day brought- as though it were sunshine or rain or an LL Bean catalog in the mail. It doesn’t feel personal. I know people who take offense to the rain. How dare it rain on my wedding day! Who cares? Nature is balance, nothing more. I’ve been practicing putting the sickness in the same category as the behavior of nature. It takes the sting of it away. Today is Wednesday. It’s humid and raining off and on. My limbs are heavy and stiff and my fingers don’t fold so easily into my palm. The invisible wet blanket of the illness I carry is extra wet–maybe from the rain! But none of this has anything to do with how happy I can be. How much joy I can find.

The things that thrill me still exist. Monty’s tail still wags when he sleeps. The smell of the magnolia tree outside is heightened from the rain. I have a house for Monty and me. A home base that isn’t impatient at all when my life has to slow down. I don’t have to run from sick days. I can let them come and let them leave and not get upset in the meantime. Simple pleasures still exist. My eyes can still take them in. And even if my eyes give out on me, my heart will still know the joy of it. My soul is learning to open slowly, much like the magnolia I picked that is now wide open at my windowsill. I am hanging on to life’s little treasures and remembering and emphasizing and reminding my busy brain that all of these things exist no matter what condition my body is in or what kind of outlook I have. I can stay closed until I think life is going my way or I can open up wide to the world and the sun and every person and animal I meet. It is in fact, up to me. If it’s left up to anything else, then happiness will be a constant, conditional pursuit and never actually attainable. I think when you’re around happy things enough, you start to see where they have it right. Today is Wednesday. It’s muggy and hot. I am heavy and dragging. It will be a good day.

Mastery of Life is the Opposite of Control. -Tolle

Health, Happiness, Wednesday.

The Only Gift to Give

Published on by Mary Gelpi2 Comments
(me)
(me)

For as long as I can remember, my mother has never been one for presents. Specifically cutesy presents like mugs that say # 1 Mom! or trinket-type gifts like the kind from the Hallmark store. I guess at her age and after four children, she’s accumulated enough “stuff” to last until her end. She gets it. She’s the worlds greatest mom. Enough with the mugs already! It’s not that she isn’t sentimental, because she is. It’s more that now, those $20 items from the mall just seem gratuitous. She will always say “Thank You” to a gift but I know she’d rather we save our money or donated it to someone or something that really needs it. It seems like free, homemade gifts have always been her favorite. Since I’m living under her roof and on her dime, it wouldn’t make sense to buy her a gift anyway. It’d be with her money! I’m like the little drummer boy but all I have to give are words. “I have no gift to bring Pa Rum Pum Pum Pum!” Anyway, I guess every mom just likes to know they were thought of in a meaningful way. I’m not a parent so I couldn’t know, but I’ve heard it’s both the hardest and the most rewarding job on the planet. Most of the time your efforts go unnoticed, or under-appreciated, or unrealized until decades later, and it’s good to set aside a day to let them know: We noticed the work you did– and thank them for it because it’s a job well done. Here is my totally affordable thank you to a mom very deserving.

I want to say that whether you knew it or not, I’ve been taking notes from you. Because more than someone who performs countless motherly duties each day, a mother is also simply a model human being for her children. Everything you were doing as an adult, were things I observed and learned from.  Watching you navigate through dark times. Noticing your courage and grace when things fell to pieces. Watching you keep going when it would have been easier to give up. Those are all things I will carry with me–forever. I never felt too young to take on the lessons you were learning yourself. If I am ever a mother I will hope to pass those things down to my own kids. But as a singular human being, I will keep them with me and they will guide me long after you’re gone.

Perhaps the best thing a kid can tell their mom is that they’re happy. The last few years have been extremely difficult for me. And I know that as a mom, having to watch your child suffer is even more painful. So often she told me she wished she could go through the experience for me, and save me from the pain. I think most parents would agree. They’d prefer to take on the hardships themselves then have to watch their child go through it. But as much as parents want to protect their children, hide them from the pain and perversions of the world, they also have to trust that they have instilled enough love, value, self-esteem, and wisdom in us so that we may not run from the hardships, but that we may find our way through them, and come out of the other side intact–wiser and stronger, not bitter and broken. I want to tell my mom that even though life has been at difficult, sometimes unbearably difficult, and I’ve wondered how I’d get through, that I would reflect on her life and remember all of the hardships that she had emerged from. The memory would remind me that I could do the same. I’ve always known that at the root of everything, I am loved. Unquestionably. Unconditionally. Consistently. I have always known that. And that knowledge makes a difference to a kid. Whether we’re 3 or 30. I wonder what the world would be like if every child knew that. In times where I didn’t feel like I could keep going for me, I knew that I was loved enough that I would keep going for her, for them. And that guided me. That kept me going.

I know that  watching a child in pain is almost unbearable for a parent. I could see it in her eyes when I was sick and incapable of many things last year. It hurt her too. But I also know that there are few greater feelings than a parent watching their child experience joy, find happiness, emerging out of the other side of darkness. I want to tell my mom that I am happy. That I’m OK. And no matter how hard my life gets, I will always be OK. Because look what we’ve already made it through! It used to frighten me, remembering how hard life can get. But now it strengthens me. It’s a choice; I can think of either the rough times and be afraid or remember that we made it out of them and be reassured. I know that being a mother and worrying go hand-in-hand, but I want to tell you not to worry. I am OK and I will always be OK.

I think in the end it doesn’t come down to how many shirts or mugs or magnets you have in your drawer of trinket gifts. Those are things and things are temporary. The love and the lessons you handed down are what is forever. The love you gave through happy times and sad times. The wisdom you exuded when it felt like the world had turned its back on us. Crying when you need to. Laughing when you need to. But never turning bitter, never giving up. All of these learned responses are what you handed down. They are what we will hand down. And the next generation will hand down. And that’s the thread of life being sewn across the world. Nothing temporary about it.

I guess all of this is to say, job well done. Your work will live beyond your life.

Love,

Mary (and Monty)

P.S. Since your other children are out of state, they each wanted to draw you a picture for today. In case you forgot their age judging by the quality of their art, I’ve included them for you.

Health and Happiness and Happy Mothers Day!

This is from your oldest son Doug. He is 35 years old.
This is from your oldest son Doug. He is 35 years old.
This is from your son Nick. He is IV league educated.
This is from your son Nick. He is IV league educated.
This is from your daughter Amelie. She's a designer. (Age 32)
This is from your daughter Amelie. She’s a designer. (Age 32)

You’ll Forget. And So Will They.

Published on by Mary Gelpi12 Comments

There is one component of this illness and autoimmune diseases in general which exacerbates the whole experience. The invisibility factor. You can’t see it. Many times when it shows its ugly head, no one is around to bear witness. People see us when we’re out and about and well, or faking it. I’ve lost count of the number of times I hear “But you don’t look sick!” People have a notion of what sick looks like, and this doesn’t fit the bill. One day you’re normal and the next day your plagued with something worse than a flu, or a hangover, but you didn’t do any drinking. It’s just such an enigma on so many levels, besides keeping up appearances, that it’s no surprise people just plain forget you’re sick. And it’s understandable. Because honestly, you forget too.

To this day I find myself committing to things as though I am normal, as though I have boundless energy, as though I don’t spend days in bed sometimes for no real reason at all. My circumstances aren’t normal. And some days I have to remind myself by the hour of my limits. Many times I fail to recognize them and I pay the price. So it’s no surprise that the people we love, the people we’re closest to-friends, lovers, family- they’ll forget too. And it’s easy to see why, but it will make you defensive. You’ll tell yourself they just don’t get it and they’ll never understand! And you’re right, they don’t. It’s impossible to know unless you’ve got it yourself. But don’t let that separate and isolate you more. You’ve got enough boundaries. When someone doesn’t believe you, when someone criticizes you, judges you, or doesn’t give the sympathy you’re looking for, let it go. Meet their disbelief with love and understanding. Because the truth is, if you weren’t sick with this, would you understand it? I know it’d be hard for me. I was young when I became ill but I remember distinctly things coming easy to me. Being a good gymnast. Getting good grades. Good family and friends. A 9-year-old with everything! I had no real reason for pause. I often consider what my life would be like had I not gotten sick and in general it’s with the notion that I’d be a better person living a better life. I really wonder about that now. Being sick and at the mercy of others help and kindness, I’ve learned remarkable lessons in humility and compassion, and those are just scratching the surface. I can’t say who I’d be without illness. But like my mom said once “Who knows? Maybe we if we hadn’t gotten sick we’d just be two capable assholes.”

The point is, when I still my mind and consider all the parts of this, I can understand the doubt, the skepticism, the misunderstanding from others. This is not a well understood disease, even for us sick ones. (But I know that one day it will be. I know that.) I remember once last year, I woke up with a pounding migraine. I was in one of my awful cycles. The first dose of medicine didn’t work so I took two, among my other cocktail of meds. I got out of bed around 1:30, hazy, tired, and the hint of my migraine still masquerading around my head. My boyfriend at the time saw me and said “You’re up! Hey, do you want to go shoot guns today?” At that moment I thought of 647 other things I would rather do than shoot a gun. The mere thought of shooting a gun made my headache perk up like what? huh? guns? Here I come!!! Even the suggestion of that activity made me mad. I felt really misunderstood and alone and thinking what I so often think: if they could only feel what I am feeling, they would understand. And it’s true. I think if most people felt the symptoms of CFS even for ten minutes, they’d have such a better grasp of what we are dealing with on a day-to-day basis. But that’s not possible. So it is up to us to communicate with love to those who don’t know. What we’re dealing with is basically invisible, and getting defensive and trying to prove it will exhaust us even more.

Besides my mom, who is also sick with this, I think about the one person who has been by my side throughout all of this, and has required the least amount of explaining. The answer is Monty. I realize that sounds juvenile. Oh Mary, you crazy dog lady..maybe you should talk to some PEOPLE. And truthfully I probably should. But I think about the number of beds Monty has slept at the foot of. Patiently he waits until I get up. Some days it’s only a minute..we don’t play and he doesn’t seem to mind. He follows me into the bathroom, he follows me out. When I go back to bed, he does to. And this is a very energetic and active dog. He could go all day, literally. But it truly feels like he picks up on sick days. When I wake up in the morning, he always takes some deep breaths really close to my face. It’s like he can tell by smell whether I’m going to get up or not. Sometimes he sniffs and hops out of bed ready to go. Other times he sniffs and goes back to bed. It really is like he knows.

The thing is, Monty doesn’t understand all the weird components to the illness. He doesn’t know what chronic fatigue syndrome is. He doesn’t understand why some days we play and other days we don’t leave the bed. Sometimes for a few days at a time. But he doesn’t even require an explanation or a defense, because what he is exemplifying so beautifully is living in the present. When it’s time to play, we play hard. When it’s time to sleep, we sleep like it’s nobody’s business. Whatever he does, he does fully. He shows up wholly to every moment. And it’s a truly impressive thing to witness. One of my favorite things is to watch Monty when he gets up in the morning. I open the door for him and he walks outside, stops, and sniffs the air for about 15 seconds. It’s like he’s taking in everything from the night and everything that the day will bring. I like watching it because it’s reflective, and we live such busy, fast lives, we constantly neglect reflection. I think it’s fair to say that it’s required for a happy life. We have to stop sometimes. We have to take things in. We have to feel our feelings. (Smell the roses, if you will.)And we don’t need to say it all on Facebook. Some things we should hold inside near our heart. Or whisper it to someone we love.

I am reading a book called Everyday Grace by Marianne Williamson which is incredibly poignant and really well-written. I find myself underlining entire pages. It’s always been a goal of mine to have a book club but of course I’ve never gotten it together and am bad at keeping commitments. So for now the blog will be it. And I invite all of you to read and share your thoughts on these books. I have about twenty more pages and will have a review/summary/dialogue next time. But if you’re looking for a book as a companion..this is a good one. It’s been seeing me through sleepless nights and reading it when I wake up in the morning gives me a happy way to begin the day. One of my favorite lines near the beginning is “We don’t need to push life so much as we need to experience it more elegantly, to be motivated more by inspiration than by ambition.” I like that idea. When I’m not in bed I let my instincts and inspiration guide me…even it’s just sitting on the porch swing and looking at the flowers, which I do a lot. Monty makes me throw a ball and swims laps in the pool. See?

Please just throw the ball.
Please just throw the ball.

 

Anyway, I am working on living a reflective life. I try to take in every moment truly, and feel it genuinely. Even if the moment is sad or fearful. I know that not feeling things through leads to trouble later on. I’ve been there before. For now, I feel happy. The sun is out and the porch swing is calling.

Health, Happiness, Smelling the Roses

Baby Talk.

Published on by Mary Gelpi5 Comments

Around New Years this year, while I was half dead in a record-setting cold and dreary Colorado, my sister and I were texting. She said that 2013 would be The Year of the Gelpi, as though it were a new hybrid car that ran on water. Among other things, She was going to get pregnant, and I was going to get better; things we’d both been after for a while, but neither one conquered. It’s hard to keep up hope when day after day you feel exquisitely the reality of your circumstance. I often wished I could just take all my sleeping pills, hibernate like a bear, and wake up in the Springtime. All better. But I was also well aware that taking all my sleeping pills meant dying, like for real, like dead dying. Not the day-to-day I feel like I’m dying dying. And I wasn’t ready to call it quits either. I knew there was more to the battle, so I just held on, because that’s all there was to do.

My sister’s situation was a little different. She and her husband decided a few years ago they’d start trying for a baby. Which really meant, they’d just stop trying not to get pregnant. After a year went by with no “success,” my organized, take-control and conquer side of my sister started to monitor every part of the process. Was his stuff OK? Was her stuff OK? Can teeth whitener lessen your chance of pregnancy? Everything checked out OK. We’re just so used to seeing people sneeze and get pregnant that the word “trying” began to take on real meaning. Finally, on her 30th birthday, on a whim she took a pregnancy test, and to her excitement it was positive. I knew that was the best present she could have gotten that year. Yes she was only 4 weeks along but it’s true–she glowed. It was extremely early so they told very few people, even though I remember thinking it was silly. “Let’s tell everyone!” I didn’t understand the need to be so precautionary. I happened to be staying on their couch 2 years ago because, hello, it’s me, that’s what I do. One morning she woke up and said she felt “different.” She had some strange symptoms, and all of her “pregnant” symptoms seemed to have vanished. I told her not to google them because it would only scare her and it’s best to stay calm. Before she could get in to see the doctor, I looked online and cringed as I read many people’s accounts of an early miscarriage–most described her symptoms exactly. I didn’t tell her what I read. I said everybody and every pregnancy is different and we shouldn’t assume anything until she sees the doctor. I prayed for a better outcome, but when he called the house that night, the results weren’t good. The fetus had stopped developing. He was sorry for the news.

I knew it was really hard for her. I don’t know what it feels like to be pregnant, but I know that after you’ve tried and tried and you finally get it, it must be that much harder to lose. It seemed like an unfair teaser. I’ll never forget my sister, brother-in-law, and me standing in their bedroom when she got the news. She hung up and cried a few tears and Keegan and I hugged her. Then she wiped them away and said “I think I want a glass of champagne please.” Keegan was quick to grab a high quality bottle from the kitchen and three glasses. We also ordered sushi, something she’d given up for the pregnancy, and gorged ourselves. Staying true to our morbid sense of humor, we made terrible jokes and tried to have as much fun as we could while we grieved something we couldn’t see.

They would spend the next year and a half meeting with fertility specialists and exploring all their options when it came to having a child. “Who knew it was this hard?” I remember her asking me one day, and admittedly I did not. For one thing, I’m ashamed to admit I watch that show 16 and Pregnant, and those kids make getting knocked up look easy. Not to mention, we’re in the time of everyone and their mother (haha) getting pregnant.

It's so easy!
It’s so easy!
mag
It really is quite easy. Cheerio!
Oh God.
Someone make it stop.

I mean, if Snooki can accidentally make a baby, certainly this healthy, loving married couple with financial stability should have a solid shot at it. It threw us all off that you couldn’t just shoot some tequila and let the magic happen. Could you?

After two doctors, a few rounds of fertility drugs and one procedure, there was still no baby. The next step was going to be very invasive and very expensive. In late Fall, they decided to hit the pause button on the whole charade. No more fertility drugs. A break from the doctors. They were going to let the rest of 2012 finish with as little stress as possible, and pick up where they left off in 2013. The Holiday’s came. We ate gourmet food and drank good wine. 2013 approached and the funny thing is, that night my sister was texting me that this was going to be our year, she didn’t realize that half of the dream had already come true. Inside, a tiny miracle was beginning. And after learning what all is required to take place in order for life to begin, there really is no other way to put it. It is a miracle. I don’t really mind how cheesy it sounds. I also don’t understand how so many people don’t intend to get pregnant but do, because A LOT HAS TO HAPPEN FOR IT TO WORK. But wouldn’t you know it, they got liquored up on Christmas, and well..you know the rest. Apparently the Snooki method works!

Today is my sister’s birthday and I know that it’s a special one. I haven’t given up that my dream will come true too. She’ll have a baby and I’ll get better. But I’m realistic. I know I won’t just wake up one day healed. The key to getting healthy for me is to be at a point where I can manage it effectively. Where I can function and not spend multiple days or weeks in bed. Where I can be proactive and not reactive with treating my symptoms. And where I can remain hopeful, enthused and optimistic even when I feel the worst of it. I have to learn how to find happiness and peace, regardless of my physical state. And I don’t think it’s impossible. It will take dedication and determination and support, but hey, it’s only April. I’m going to be an aunt again in September, so that gives me five months to get in shape. No matter the state of my health, we’re all looking forward to new life in the Fall. We’ve long awaited that little miracle.

Health, Happiness, Babies.

Life In My Parents Pool House

Published on by Mary Gelpi14 Comments

So if I die I want that to be the name of my memoir. Isn’t is perfect? It’s funny yet sadly true. A sick girl-turned-woman living in her parents pool house and on their dime. With a dog. Wait am I a girl or a woman? Now I know how Britney Spears felt when she sang that song. In any case, it sounds like a Fairytale to me. I wonder how this one ends.

What I’m really getting at is that life in my parent’s pool house is great and I recommend that all 28 year olds or young adults in general try it. I had my first night in my new place three days ago. Waking up the next morning in my bed, in my own house was basically spectacular. You have to understand it’s been 2.3 years since I’ve been able to wake up under those parameters and having to wait so long and go through what I did has made the moment even sweeter. If felt like finally exhaling after a ridiculously long tunnel. I laid in bed for the next hour with a pure feeling of gratitude, and that’s all I can really do in these instances. Breath, reflect, take it in and give thanks. If you don’t they pass you by, and you find yourself years later realizing how good you had it only in retrospect. I realize how lucky I am to live in a beautiful house, to call it my own, to have a pool, and to be given help and time to heal, when my givers know I can’t really pay it back. I guess that’s what you call love isn’t it. Did I mention Monty loves it too? He’s also deathly afraid of the polaris but not enough to stay out of the pool.

Woo!
Evil Polaris EVIL POLARIS

Moving into a house when you’re a sickly takes a very long time. Also having this month-long headache still isn’t helping, but who’s counting? I was overeager in the beginning. I wanted to set up every room and unpack every box and start painting walls all on the first day. It took a little overdoing and paying the price later to realize OK, this needs to happen one room at a time. Sometimes one piece of furniture at a time. And mostly one drawer at a time. It’s ridiculous to me how many times I have to learn that lesson. That overdoing it will be costly and painful, and yet I continue to overdo it and pay the price. And the funny thing is, most people I speak to with this illness (like my mom and everyone at the support group) say they do it constantly. You’d think we’d learn after all these years. We’re a bunch of stubborn dum dums!

Anyway I think the most exceptional part about living by yourself is the amount of time you can spend without pants. Like that first day, after I spent the hour of gratitude in bed, I got dressed and began unpacking and organizing and having these grand fantasies in my head like “And in this room I’ll have scrabble tournaments and in this room I’ll serve afternoon tea.” All of which will probably never happen. After a while my pants were really beginning to bother me. Don’t ask why–sometimes it’s noises and sometimes it’s clothing. And then it struck me that I could take my pants off and keep unpacking because THIS WAS MY HOUSE and at my house PANTS ARE NOT REQUIRED. So I took them off and unpacked in my underwear and soaked up the amazing feeling of being able to do what I want in my own place because I make the rules now. Yeah! Other rules include:

  1. No Bill O’Reilly (Not even an option because I’m poor and don’t have cable but still)
  2. Peeing in the Pool Is Actually Allowed. I know you’re going to do it anyway and come on, we use strong chemicals in there.
  3. No guns.
  4. All dogs allowed! In fact, no humans without dogs.
  5. What happens at the pool house stays at the pool house. Like swimming. And scrabble.

So basically, there are no rules. I just want it to be a happy place and an open door to the people I love. I can’t guarantee I’ll be wearing pants, but hey the world has bigger fish to fry. This other cool thing happened while I was touching up paint the first day. I found my ipod from like 5 years ago and thought I’d play songs on random and be entertained from my 5-year-old playlists. The first song that came on was “Let It Be” by The Beatles and I totally stopped what I was doing and belted that song as loud as I could. I’ve heard it so many times before, but suddenly all the words felt like they were being sung just to me and my life. The lyric that really spoke to me was There Will Be An Answer. Because there will be. One day. Maybe not for many many years, maybe not even in this life on earth, but we will see what our lives mean in the grander scheme of things and we will get an answer to our pain and sorrow. I dream about that moment of clarity and revelation all the time. In the meantime, we just have to hang on. Pick up the pieces. Keep going.

Anyway, I played that song about 6 more times really really loudly and sang it really really loudly because that’s another rule: You can sing as loud as you want. Standing in the kitchen. In your underwear. In fact I recommend that’s how you do it. So below is the song Let It Be and I suggest you play it and belt it and let those words remind you that everything is OK. Even though, I know it’s not. My life is a mess. The world is a mess. I watch the news and I see it. I see war and poverty and violence and corruption and it all makes me feel very small. Very powerless. All I am is a sick kid who calls it a success if I take a shower frequently enough. But it reminds me of a quote from Joseph Campbell. He says:

“When we talk about settling the world’s problems, we’re barking up the wrong tree. The world is perfect. It’s a mess. It has always been a mess. We are not going to change it. Our job is to straighten out our own lives.”

It’s not the most romantic theory about life, but it can be reassuring. When I think about what the world has evolved from, (think even from the Civil Rights Movement to present day) it gives me hope that we will continue to grow. It’s all going to be OK. We’re here. We’re awakening. We’ve survived this much, and that’s what we’ll continue to do.

Health, Happiness, Pants.

Back To New Orleans.

Published on by Mary Gelpi6 Comments

Excuse the drabness of this post, I’m on day 10 of a headache and sometimes it makes the words come out funny. Or boring. But the show must go on! Anyway, I have some news. I’m pregnant. Just kidding. I just keep dreaming that I am. It’s pretty stressful. Because in the dreams I’m like wait, I take waaay too many pills to effectively grow a fetus inside of me. The rest of the dream is spent in panic mode wondering how to be this sick and how also to care for a child. Sick girl fairy tales! So, the real news.

First, I’m back in New Orleans. Monty and I both are. In fact I’m writing from a courtyard at a friend’s apartment in the French Quarter now. It’s weird to think I’ve been gone for nearly nine months. I don’t know if that’s a thing about the South or a thing about Home, but it never truly feels you’ve been away for as long as you have. As soon as the humidity grabs you at Louis Armstrong Airport, you pick up right wherever you left off. Changed or unchanged.

My original plan was to just spend the spring here. New Orleans has about the shittiest climate of any American city, but April and October are magic. It’s perfect. And when you’re here on a day like today, you wonder why anyone would ever ever leave the place. Plenty of artists have depicted the perfection of this city a million ways better than and before me, so I hesitate to try. I can only describe it as magic on days like this. Of course outside those couple of months, is a city ill-equipped for a few weeks of penetrating cold, followed by relentlessly rainy or relentlessly hot or relentlessly both. In those times it’s easy to see why people would leave. And yet few seem to. The roots here are deep, and I love how many love stories there are between person and place. I’ve lived in different cities over the years and have more than one place to call home, but there is reserved a very special spot for New Orleans. It’s like that boyfriend you never quite get over.

The original plan was to come for my friend’s wedding and spend a month reacquainting myself with the city I’ve been missing. But in February my parents made me an offer. They knew how hard it had been for me to give up having my own place two years ago. Beyond not having the money to afford my own place, I don’t really have the health to live on my own either. It’s a chunk out of the ego to come to terms with things like that. My mom was constantly driving over to pick me up and bring me home. It’s long been a difficult truth for me to accept that I can’t live on my own. I have always loved solitude, and basically since moving out of my apartment that March a few years ago, I haven’t been able to really find it. That all changed in February when my parents told me they were willing to let me and Monty move into their pool house. Because that’s what all mature 28 year olds do; they live in their parents pool house. My mom explained that this way, at times when I’m too sick to be on my own, they’ll be on the property to help. And for the rest of the time, I’ll have a place to call all mine. 

Since that morning, even the thought of their offer has brought me ease. One of the hardest feelings in the world is, in a word: stuck. Stuck with somebody. With something. In someones house. Stuck in a crap situation. One where you don’t see an out. I have confronted this feeling many times and it can feel crushing. It’s often just the wrong set of eyes to be looking at a situation. Many times when we feel stuck we’re not always seeing the whole picture, or the truth of what we’re surrounded with. But I must admit, the feeling has pervaded over and over and I think it stems from a lack of options and a lack of power on my part. When you don’t have health and you don’t have money, you’re not left with much to offer the world. You’re sort of just relying on the pure heart of people around you, because if I’m honest, for everything they do for me, I have little to offer in return. And that has been the truth of my situation for a few years now. So many times–relying on the goodness of people to do things for me, knowing full well I most likely won’t be able to pay back the favor, or the funds, or a house. It’s been a lesson in humility to say the least. How does that quote go? The true character of a man can be measured by how he treats someone who can do him no good. Something like that. I think of those words all the time. I watch people endlessly help to make sure my needs are met, and all I can do is go to bed at night with an immense sense of gratitude and no certainty that I’ll ever be capable of repaying the favor. I promise myself and the universe, if I’m ever well again and if I ever have money, I will use them both graciously for good.

Tomorrow I’ll start the move into my new place and fantasize about all the wonderful things that may happen to me and my life when I’m in it. Maybe it’s the house where I get better. Where all my wildest dreams come true. Where I find my happy ending. Maybe it’ll just be a nice place to write and lay around and be sick. Go my own pace. Either way, it has a pool, so Monty will be happy, and that will make me happy. I also really enjoy being under water, so there’s that too. I’ve got some projects in mind to begin working on now that I have some space to carry them out in, so at least there will be time and room for all the ideas I’ve been scribbling around in my library of notebooks. Before I go, I’ll leave you with a few photographs of the magic city in Springtime. Everyone needs a pretty day in New Orleans. It does the soul some good.

Health, Happiness, Home.

Nothing beats a New Orleans Wedding.
New Orleans Wedding.
Nola Windows. They're the best.
Nola Windows. They’re the best.
photo-68
Life In Color.
Eating crawfish. Once you know, you know.
Eating crawfish. Once you know, you know.

Girl Without Pills

Published on by Mary Gelpi19 Comments

I ran out of pain pills last night. I took my last one at 2 am, with fingers crossed and divine pleadings for what lied ahead. I knew full well that if something were to go wrong tomorrow between the doctor or the pharmacist or something logistically silly that I have no control over, then it was going to be a very bad day. All it takes is a pharmacist who decides that it’s too early for your prescription to be filled, or decides they need the prescription in writing or says that only if it rains tomorrow will you be able to get your pills. Every time I pick up the phone to talk to a pharmacist, check on a prescription, call something in…my heart pounds. It’s a true battle. Seriously. If I didn’t get the pills by tomorrow I’d be positively out. Dry. And I’m years beyond the point of something like tylenol or advil being any kind of effective. The sad truth is that if a 200 pound man took the pill cocktail that I do everyday, he’d have a hard time functioning. If it sounds like I’m bragging I’m not. It’s just the truth. I’ve been trying to get my pills since last Friday. If I don’t get them tomorrow, on top of the pain there would be  bad withdrawal effects. Icing on the cake.

Bright and early this morning I called the doctors office to make sure they received the authorization form. They informed me that they received it and authorized it on Friday. Last Friday. Bad news. That means a pharmacist decided not to fill it for whatever reason. And now the state of my well being, my comfort, my ability to function and sleep, is resting on the shoulders of someone I don’t know at all, and whatever he or she decides is the appropriate day to give a sick girl her pills. But I am just one of many. I’m sure they’ve heard a lot of stories. A lot of abusers. Addicts. Maybe to the pharmacists we’re all addicts until proven sick. “Your pain medicine will be available to pick up tomorrow.” I can tell by the stern urgency in her voice, there is no talking her into giving them to me a day early. A day earlier than the arbitrary Thursday that someone decided was the absolute appropriate day for Mary to get her pills. I tell her thank you. I talk to her like she’s a cop. Make her feel powerful and thank her graciously. I hang up the phone and know that the next 24 hours are going to be tough. I’m not going to sleep tonight. It’s 10 am. The pharmacy opens at 8 tomorrow. 22 hours to go.

Oh you want these pills? TOO BAD!!!
Oh you want these pills? TOO BAD!!!

I often try to calculate how many hours I’ve spent in line at Walgreens. On the phone with Walgreens. On hold for my doctor. On the phone with insurance. (Back in the day when I had insurance.) Acting as a mediator between two institutions which seem to often…miss one another. It’s probably better I don’t know. I don’t count the thousands of dollars out of my moms savings that go towards prescriptions. Inevitably the numbers would be high and sad and dissapointing. What I really need to do is be thankful that for now, there are pills out there to help me and for now, we have the money to buy them. Except today. Today was different.

Today was an insane reminder of what my body feels like in its natural state- which is fucking terrible. I’m sorry about the F word, but I really desired emphasis there. It’s been awful. Of course part of the feeling is withdrawal..but mostly it was just that widespread pain and awful, burning, firey legs. Under my fingernails hurt. My gums and teeth hurt. My body felt like a high voltage electric fence–exuding pain frequencies. It was pretty terrible. At the same time there was light at the end of the tunnel; I knew that by tomorrow I’d get relief. So it was only a day and I looked in the mirror and said for God’s sake Mary, I can go a day without! 24 little hours. And of course I could..it wasn’t going to kill me.Mostly it was a huge reminder of what life without pain medicine would be like, and it was really, really terrible. I know I sound like an addict- but I don’t get high off of my pain medicine. I take one at a time, and I don’t feel euphoric after. I just feel relief. But to outsiders I know what it looks like. And I can understand.

I fully prepared myself for another night up by myself, counting down the hours until I’d get my hands on something to take away the pain. A bath provides about 20 minutes of relief. But once you step out, it’s over. It all comes back. I wish I knew what was going on in my body. It’s like it’s being held hostage by an invisible monster. I realize that pain is not the natural state of the body. It wasn’t built to exist this way. I constantly think of a line in Mark Nepo’s book where he says “Pain is just a sign that something needs to change.” I wonder what needs changing in my life. I try to pay attention. I try to find the meaning in all of it. I do a lot of examining. I know examination is one of the benefits of my situation. It’s hard to truly examine life with all of our distractions and obligations- it’s hard to unplug from our devices. There is rarely quiet in the world. It’s up to us to find it.

I must have a pain killer guardian angel, because when my brother-in-law came home from work close to midnight I told him about my all-nighter plan and the insane state of my body. He happily informed me he had some leftover pain medicine from his knee surgery in his truck. HALLELUJAH!  The pain was going to go away now. I was going to get some sleep afterall. He saved me.

Sadly I know that it won’t be long before I run into this problem again. This logistical, bureaucratic, prescription nightmare is basically constant and I know that all you chronic sickleys out there have to deal with it too. And it’s not the pharmacists fault. It’s not the doctors fault. It’s partially a broken system, it’s partially the fact that drug addicts have tightened the reigns so much on oversight of certain drugs that it’s become hell for people who actually are just trying to feel better.  Last week it took countless phone calls and ten days to get my anti-biotics filled. Ten. I could bore you with the details but I won’t because we all deserve better!

It’s 2:30 am but I’m awake because 1. This is my quiet time. 2. It’s really nice to be alive and not feel the pain that I’ve been feeling all day. 3. When your soul wants to write, your soul wants to write. I have to be honest; all of this scares the shit out of me. I don’t want to have to take pills the rest of my life. I don’t like that I am dependent on medicine to be functional. But the hard truth is that the alternative is just not doable, or worth it to me. I couldn’t endure that type of pain everyday and be a solid human being. I think, eventually, it would just break me. It scares me because while I feel like I’m getting old, in the grand scheme of things I am only 28. I want to get married one day. I want to have kids. I don’t want my liver to explode. But there’s not really a way those things are possible for me right now and I trust that I am where I’m supposed to be. I really do. Being on my own has been immensely educational. In a way it’s made me stronger. Smarter. More self reliant. You sort of learn how to make yourself happy, and there is real value in that. I heard somewhere that 40 is the new 30, so maybe I don’t need to worry about these things just yet. I know the focus needs to be on getting well. It also needs to be on acceptance and finding my heart of joy, and writing, even when things are grey. I want to feel completely whole before I bring in anyone else to my life, and there are still a few pieces I’m looking for.

Anyway, now that the pain has subsided, I should try to find my way into the world of sleep. I day dream all the time about a life without sickness, without pills, without entitled pharmacists dictating a life. But the truth is, even in my dreams at night, I am looking for pills. Taking pills. Spilling pills. Pleading with pharmacists. When I wake up, its because of  pain. I take a pill of almost every color, and then I sit and wait. Every day the same. The life of a sick kid.

It’s better than it sounds.

Party On Wayne!!!

Health, Happiness, Pills

Art!!!!!!!

Published on by Mary Gelpi5 Comments

Since my genuine exposure to the “old times” has been either black and white photos or black and white film, these color photographs that have emerged of life in the 30’s and 40’s have found their way into every corner of the intweb and are a real gem. Every time I look at them I feel like I am glimpsing a reality that I’ve never truly felt connected with. The olden days have been described to me by my grandparents and in magazine articles and I’ve laughed at the way actors speak in old movies and their gay, wordy advertisements– but for some reason it’s just always seemed like a story. It never quite felt personal. I know it was real, because my grandpa used to tell me war stories and I’ve sat through history class since 3rd grade, never truly appreciating that there really was life before me. So it’s funny to me that something as simple as color could bring something so distant to life for me, but these really do that. It’s like looking at thousands of paintings of Jesus and then being handed a headshot.

A Man Named Jack and His Family, October 1940
A Man Named Jack and His Family, October 1940

Basically, the disconnect between then and now was broken, and I dove right in. The prints were taken on Kodachrome by the Farm Security Administration and Office of War Information throughout the 30’s and 40’s respectively. They were then released by the Library of Congress in 2006 for an exhibition called Bound For Glory; America in Color. I don’t know why the element of color has upped the real factor to such a high degree, but I never get tired of looking at them. I have to remind myself constantly that they aren’t actors and  they aren’t in costume.

Homesteaders Faro and Doris, Pie Town New Mexico, 1940
Homesteaders “Faro and Doris” Pie Town, New Mexico 1940
Woman Aircraft Worker- Burbank, California 1942
Woman Aircraft Worker- Burbank, California 1942
Bayou Borbeau Plantation- Natchitoches, Louisiana 1940
Bayou Borbeau Plantation- Natchitoches, Louisiana 1940

For as long ago as the “old days” have always felt to me, something about these color prints remind me it really wasn’t that long ago. Can you imagine showing the people in these photos an iphone? Or trying to explain the premise of Facebook? (Kind of makes me feel disdain for the times we’re living in) So much has changed and yet inside, I don’t feel we’re as far apart as we think. Then again when I looked at Facebook a few minutes ago, I may have changed my mind.

I think a lot about the “records” we’re leaving behind for the generations who will come after us. Looking for clues as to what life was like in our day, for the strands of humanity that tie us all together no matter how many years have passed. Will there be Facebook 100 years? How will our grandchildren study us? It hit me a few days ago that this blog is somewhat of a record itself- a sick girls life and her dog and yada yada. It then occurred to me that if I die tomorrow..the blog would live on. It has its own shelf life now. Unless I leave someone in charge to disassemble it once I’ve gone on. But I think I’m fine with it living without me. It’s turned into a community of sorts and that’s something I hope will live…forever? But my Facebook page– Maybe somebody should kill that.

So it was cloudy and California’s version of cold today and since it was one of those days that a normal person might go to a gallery..I brought the gallery to me and started looking at art online and some of this stuff was just too good not to share. It made me wish I was an artist. But the only art I’ve made lately is this drawing of Mario Lopez  from December.

Pen on Paper. $50,000 or best offer.
Pen on Paper. $50,000 “Or best offer”

Maybe I should stick to writing. Or sharing actual artists work in this case. Here’s what really stuck with me today.

Price Tags
Price Tags

So this conceptual artist Rachel Perry Welty uses everyday items in sequence or on repeat per se to construe American “middle class minertia” as she puts it. In her show “Lost in My Life” she uses the byproducts of her domestic life to make for some unusual and beautiful prints. I couldn’t get over the stunning visuals and patterns brought on by tiny objects I see all the time.

Bread Tags
Bread Tags
Twisty Ties
Twisty Ties

I love how she never shows her face and how the small pieces become part of her apparel. Awesome stuff! You can read more about her and her exhibition here or here. For me the most inspiring part to hear was that she didn’t even enter the world of art until she was 36, and her work and ideas emerged out of lack of materials and time as she was a full-time working mother when she began. Word.

OK and then there’s this:

Chairs.
Chairs, Istanbul 2003

How effing cool is this? Artist Doris Salcedo filled a gap between two buildings in Central Istanbul with roughly 1,550 chairs and her intent was to create a “topography of war” embedded in everyday life. Whatever you deduce from it, you can’t deny that visually it’s just spectacular and the simplicity of materials with such a complex and poignant result is surprising, not to mention its impressive scale.

Lower view
Lower view

You can read more about the artist here or here.

OK last and not least I discovered a poem today that I found so incredibly enjoyable that I realized poetry can be fun and good modern poetry does exist. My friend Giselle, a ceramic artist, hates poetry mostly and I understand why, and a lot of the time I hate it too. (It doesn’t stop me from writing it or reading others) But this poem today, well it just really stuck with me and reminded me how much fun an often sad art form can be. It’s a little lengthy so click here to read it. It’s called Tap Water and is written by Mathew Yaeger. Job well done dude! A few favorite lines are:

What good is it
polishing to a shine the pile of dimes on which your life
has turned. You feel blessed or you feel regrets.

and also

When a woman has entered your life and then
left it you are changed and while you may change
forward into something resembling what you once were
you most certainly do not change back.

So, I guess that’s enough art for our cloudy cold Tuesday. Monty is bored. I’ll see you next time.

Health, Happiness, Art Gallery Day

That New House Smell.

Published on by Mary Gelpi11 Comments

I’m sitting upstairs in my new bedroom in our new house. After eight months in an apartment complex I called the “California Projects” for many reasons, most recently a murder in the apartment above us, it feels good to be in a house. A real house. There’s a yard and a small playground. My room has a bay window; something I fantasized about having as a child, and now at 28, my window dreams came true. There are men downstairs installing the floors and speaking in Spanish. In typical white girl fashion, I say Hola! and ¿Cómo estás? and that is all I know so that is the end of the conversation. They are nice. I wish I could creep on their conversations, but I chose French in college which, outside of my semester in France, I never ever speak. Except for my dreams and a French dude I sat next to on the plane last time I flew.

The people who lived here before us hadn’t paid their house note in two years. They are one of thousands among Southern California and America whose eyes were bigger than their wallets. Their inability to pay made for a steal on the house but an insane amount of paperwork and complicated buying contingencies. After a lot of back and forthing, Amelie and Keegan got the house, and then tore out all the ugly stuff. Right now we don’t really have a downstairs with floors, or a kitchen or a living room. So I hang out in the yard with Monty and notice that when the old tenants kids were younger they carved their names into the cement on the side of the house. I feel a little bad. I’m sure when they moved in however long ago they figured this would be their house for life. But I guess it’s a lesson thousands of Americans learned these past few years. It makes me afraid of money. Which is fine because I don’t have any.

I mark this move as a symbol of better things to come. The last apartment was both literally and figuratively dark. There was definitely not enough windows and the light that shown  in my bedroom came from fluorescent bulbs that burned in the corridor outside my room. Yellow and artificial. I spent my sickest days ever there. On the couch or in my bed. And those steep stairs you had to walk down to get to our place–my God I hated those stairs. Each one I cursed when I walked them and my legs were shaking with weakness. Screw you screw you screw you screw you screw you. All the way to the bottom. Or the top. Didn’t matter, I hated those stairs, and Sunday was the last day I had to walk them. I flipped them off from the car as I drove away from that apartment. In my mind that song “Movin’ On Up” played in my head and I hoped that this literal upgrade would also be the symbolic mark of how all of our lives turned around. How once we moved, everyone got everything they ever wanted. But even I know that’s not how it looks. Still, a girl can dream. Only good things here. Leave all the crappy stuff at the bottom of the stairs or in my old closet with the broken door.

Now we’re in real Suburbia. A three car garage and neighbors that say “Welcome to the Neighborhood!” You can hear kids playing outside and there are minivans and such. It’s a nice street in a nice neighborhood and you don’t have to go down any stairs to get in. Now when my large and loud family visits, there will be room for us- presuming we don’t all spit out a baby in the next nine months. But hey, you never know. Although last time I checked you have to have sex in order to have a kid, so, you know, I’M GOOD THERE. Monty is my one and only, and he’s happy to sleep on the floor. Here’s some pictures from the heart of the burbs. Enjoy.

Health, Happiness, Suburbia

Monty enjoying the new view.
Monty enjoying the new view.
Someone loves Taylor.
Someone loves Taylor.
Tiny furniture left behind in our sand box.
Tiny furniture left behind in our sand box.
A neighbors astroturf af lawn.
A neighbors astroturf lawn.

What Happens In Vegas Goes On the Blog

Published on by Mary Gelpi14 Comments

What’s up party people? I took my first week vacation away from the blog and I really missed it like it was some kind of boyfriend I took space from. I’d have moments observing something or participating in a conversation and think “Aww, the blog would really love this.” Then I’d try to store things in my brain to access later but most of it drifted away like cotton candy. Anyway,  I have some items on the agenda to address beginning with something that might seem a little hard to believe, but believe it baby. I just returned from a bachelorette party in LAS VEGAS and I had the time of my life. Let it be known that I had no intention of attending this party weekend for obvious reasons. I have no money and no health. And yet it happened anyway.

Movie Poster for "Sick Girl at the Window"
Movie Poster for “Sick Girl at the Window”

I had three roommates throughout my tenure at LSU and we were kind of just our own family. We all studied abroad the same semester so we could meet up in Europe together. We tackled the angst of our early twenties together. When one of us went through a breakup we all felt it in a weird way, as sappy as that sounds. We were tight knit, and those years in college were the best of my life. Inevitably, it became difficult to maintain such closeness after college, as much as we all wanted to think it would never change. Geography, jobs, marriages, and ailing health took their toll on the crew and slowly those days of casual conversations on the porch about nothing became fewer and further between. Admittedly, I am absolutely terrible at maintaining and keeping up friendships in the sense that I rarely answer my phone or fill people in on “What’s new in your life?” I am for sure the worst in our crew. But with those girls it always felt like I could go a long time without seeing them and pick up where we left off. That’s the way to define a best friend isn’t it? Very, little, maintenance.

I remember after getting my full-time job at the gallery after college thinking “Hmm, how does one go about making friends after college?” I was the youngest person at the gallery but aside from age, I felt a real void not having that crew along for the ride. I wasn’t proactive about making friends, especially since most of my weekends were spent in bed recuperating my body anyway. I was nostalgic for the ease in which those three girls and I were friends together.

The first one in our crew was married in 2011 and in true female form, we all screamed and freaked out about it for a while. It really drove home the point that college was over and we were getting older. Last year we got a similar photo text of Tiffany wearing an engagement ring and now the second one of us was “biting the dust.” Once again in true female form, we all screamed and freaked out about it as we begged for details and said all those incredibly female things like Oh my god!! How cute!!! So romantic!! When it came to my attention that Tiffany’s bachelorette  party was going to be held in Las Vegas, I felt a pit in my stomach. I’ve become pretty accustomed to missing out on things due to my lack of health and funds. But this one stung more. I have desperately missed my friends over the last two years. Especially the last few months. I feel like I’ve been a third wheel to other couples and their respective social groups for a while now, and I’ve missed the comfort and lack of effort being with your own great friends affords. I was sad to see the party would be in Las Vegas because there was just no way I was going to be able to make it and I resigned myself to the fact that it would be just one more thing I would have to miss.

But a month ago they informed me that whether I wanted to or not, I was coming on this bachelorette party. “We’re buying you your plane ticket and you’re coming,” Emily told me. Of course my ego and pride always protest a little when people volunteer to buy things for me or help me out, because a part of it just feels wrong. I want to be able to pay my own way. I don’t want to be a burden. But they insisted and I once again learned a lesson in gratitude and humility.  Sometimes you need to rest that “Oh I couldn’t possibly!” reaction, and just accept with grace the gifts that are offered to you. But there was still another problem; even if they bought my plane ticket, how in the hell would I survive Las Vegas? A month ago I was barely walking! My mom and sister insisted that for my flight out there I use a wheelchair in the airport and then get a wheelchair at our hotel and let my friends take turns wheeling me around. This was once again, going to stir up things in my pride. I don’t want to use a wheelchair, I want to use my own two legs to walk. But I also know that every time I fly, I crash the next day, sometimes for like a week. I know if I walk for more than 10 minutes some days, I pay for it for days at a time. So we were proactive early on. We made a plan.

I would use a wheelchair the day I travelled, and I would also use one at the hotel and try to stay horizontal or sitting as much as possible. I had been reading that some people with CFS have found relief using adderall so I brought some with me to take at night so I could stay awake for dinner and everything after. I began praying constantly, whenever I thought of it, for strength and energy and for things to go smoothly while I was there. I had nightmares of me sleeping the entire trip away in a dark hotel room. But honestly, I thought, even if I don’t make it out after, it would be worth it me to go there and have dinner with my friends. It had just been so long since I had done something purely recreational like this. I knew my soul needed it. So we prepared as much as we could and I left the rest up to the Gods of partying and drunken debauchery.

As I stood in the crowded lobby of Caesars Palace on Friday night, over stimulated by the sounds and sights of Las Vegas, I saw out of the corner of my eye two girls pushing a wheelchair with huge smiles on their faces, headed in my direction. My heart wanted to explode. I was so unbelievably excited to be with them again, and to know that just like in the college, they were in my corner again and I was in theres. They would push me the entire weekend, even when I would say “Nah why don’t I just walk..” My friend Emily would put her foot down and insist I “wheel it.” I quickly got a small glimpse into the life of someone who is physically or mentally disabled because people stared at me in that chair. I thought of those who are physically handicapped or disfigured and how many of those stares they have to deal with on a daily basis. I wonder if they get used to it or if after years it still gets to them.

Besides being with friends again, one of the best parts of going on that trip was feeling like a WOMAN again. I wore dresses and high heels. I had my nails painted red, did my hair like celebrities and smelled sexy, because I could. I’ve been sick and wearing the respective sick costume so long, I needed to remind myself that if I really wanted or needed to, I could still take the time and emerge out of a hotel room with my heels clicking on the glossy floor, and make a man look twice. It’s just plain fun to play dress up. And even at age 28, I don’t feel any different than when I was five and I would clumsily walk around our kitchen in my moms high heels 6 sizes too big. All of life just feels like theatre to me now. Two years ago I was wearing the corporate girls costume in pinstriped skirts and last year I wore a sick girls costume and this weekend I was all dolled up at a club and no one knew the difference. I think I really needed to give my mind a rest from thinking about being sick all the time. It can be extremely consuming and I am always cautious not to let my “story” dictate who I am. It’s always been a fine line. But this weekend, for the most part, I was just Mary. A girl with her friends celebrating the upcoming marriage of one. I danced my heart out to terrible music in the VIP section at clubs. I drank gin and tonic and flirted with boys. I even kissed one, just to make sure I still knew how. Turns out I do. I had the time of my life and I think I needed it more than ever. How am I feeling now? Well, kind of crummy. It’s catching up to me. But at least this time, I’m paying for a great time I had, and it was well worth the price.

We Are Women Hear Us Roar
We Are Women Hear Us Roar

Thank you to my friends for insisting I go and helping pay the way. I needed it. I’ll pay you back when I’m a millionaire one day.

Health, Happiness, VEGAS