Money – FibroM.E.-Awesome

The Paris Promise.

Published on September 26, 2013 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.

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

That New House Smell.

Published on February 26, 2013February 26, 2013 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

Tiny furniture left behind in our sand box.

A neighbors astroturf af lawn. — A neighbors astroturf lawn.

A Sick Kid With Some Questions; The Scandal Behind Chronic Fatigue Syndrome.

Published on September 20, 2012 by Mary Gelpi22 Comments

It is midnight and I just finished taking a bath. I experienced a really bad crash a few days ago and spent the last two days in bed waiting it out. I am unsure what caused this most recent crash. I have been taking it very easy here but something zapped. A fuse blew. Bye bye Mary. The bath I just took was the first one I’ve taken in four days. I know that this is disgusting. I am someone who prefers to shower everyday, do my hair and makeup everyday, and wear clothes that are coordinated like the commercials tell me; transitional outfits from day to night! It’s no secret that my frequency of showers has lessened in the last two years. But when the simple act of getting up to blow your nose, or reaching for something that is more than an arm’s length away and you return to your position panting, out of breath, heart racing, body weighed down…it sort of leaves showering out of the question for the time being. It’s impossible to stand that long. This is why when I do muster up the energy to get clean, I take a bath, which requires a lot of energy in itself. But I take a sick person bath. I use a water bottle to pour water over my head so I don’t have to sit in weird positions and once I’m in, I’m in for a good hour. I don’t know why, but I often start to feel like a human being late at night. It’s like the clouds part just for a moment. So while I get that small window, I take a bath and tend to personal hygiene; Brush my teeth as hard as I can, because I don’t know if I will have the energy to do those things tomorrow. If today is any indication, then probably not. Monty sleeps, raising his head every now and then at a noise I make, then goes back to dog dream world.

I know this all sounds pretty grim, and it is. This is the ugly part of being sick. The part that people who know me socially don’t ever see. The part that sometimes, like yesterday, become too heavy for me to bear. Not just physically, but mentally. All of the sudden, it weighs too much. I feel stuck. It’s all piled onto my chest to where even my breathing feels labored. I call my mom and she walks me through it. I let the dark thoughts come and leave. They are just thoughts, fleeting and insignificant. I say “I will not lay down and die today.” And then I write it in my notebook. And then I lay down. But I don’t die. (Spoiler alert!)

I survive. Suddenly, I don’t want to write poetry about being sick. I don’t want to find the wisdom in the pain. I don’t want to ask what the lesson is and find how I am a better person because this situation forced me to dig deeper into consciousness. Which is true, it did. But some nights like tonight, I’m just ready for it be over. In my bedridden state the last few days, I’ve been researching the very bizarre and twisted history of this illness, and it’s surprising to say the least. Tragic and appalling to say the most.

I want to know why the National Institute of Health has continuously allotted such low sums towards the research of CFS. For 2012 it has allocated $6 million, ranking it 220 out of 232 diseases. You can find it at the bottom of the list underneath Psoriasis ($10 million) and Hay Fever ($7 million). To give some context, similar illnesses like MS were given $121 million and Lupus, $105 million, but have less prevalence and a similar level of disability. As a result, countless studies and research efforts in the way of CFS have been put on hold or simply terminated citing funding issues.

Firework of dollars — It takes money honey.

I want to know why the Center for Disease Control has repeatedly ignored, overlooked, and downplayed this illness for a quarter-century–An illness that the head of the CFS branch himself said left patients as functionally impaired as someone with AIDS or Breast Cancer. The agency not only minimized it’s detriment by calling the thing “Chronic Fatigue Syndrome” (they might as well have called it Lazy Ass Tired Folk Disease) it’s now been documented that the CDC routinely diverted money intended for CFS research to other projects. This is all documented in the book Osler’s Web and this article by David Tuller from November of 2011. A 1999 report from The Department of Health and Human Services found that between 1995 and 1998, at least $8 million was charged to the CFS tab but rerouted to other projects and another $4 million could not be accounted for.

I want to know why the most promising research of CFS is being funded and executed by private institutions and donors, like the Whittemore Peterson Institute or at academic institutions like Columbia and the University of Miami…no where near the CDC, the NIH, or its constituents.

This isn’t just about me or just about other sick people with this illness. Contested illnesses like this cost the US billions of dollars annually in lost productivity and depletes healthcare resources. Less than 1/5 of patients with CFS work full-time, and more than half receive disability benefits. The estimated cost of lost productivity from CFS annually is $18 billion. Just over two years ago I worked full time, spent my money, paid my taxes and I was happy to do it. Now I am unable to work and unable to receive or afford health insurance. My doctor has suggested I apply for disability. I am 28. I do not want to continue taking 25 pills a day. I do not want to live off disability. I would actually like to go to work and be a contributing asset to the country. But I know that in order for these things to happen, the dialogue has to change. There are actually people and doctors out there who don’t believe in this illness, as though it were fucking Big Foot.

I know that getting mad and pointing fingers won’t really help me out tonight. I have accepted my life with this illness. I will be OK whether things change or not. I have found ways to be happy given my circumstances and some days are harder than others. I guess you’re catching me on a hard day. I have a family who supports me and was lucky to find a doctor that is a leading researcher of this illness, although her clinic at this point is barely staying afloat. But not everyone has what I do. I have received so many emails from people whose doctors and/or families have dismissed them, not believed them, or just written them off as depressed. This has to change.

I don’t know what the next step is, I just felt the need to get this stuff out in my little corner of the internet. Maybe the right set of eyes will befall on this one day and some real change can take place. Maybe nothing will happen, in which case, nothing was really lost. I’ll be in bed either way. The thing is, I am not a little kid writing to Santa Clause–This is change that is actually possible. I think there are far more important matters in the world than CFS/ME research and I look forward to the day when this is no longer my cause. I know this country can do better, and I have not ever lost hope that with the right people and minds at work, this is something we can fix, even if it’s after I’m gone.

Health, Happiness, Change.