Category: being sick

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

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

Dog Spelled Backwards

Published on by Mary Gelpi45 Comments

 

Help. I’ve fallen. And I can’t get up.

I have basically been crashed since the day after Christmas. Even before Christmas, my operational value was at maybe 40%. It has steadily gone down. My joints have become cloudier, my muscles weaker and heavier, noise louder than ever, and ordinary light offensively bright. Simply stated, moving has become difficult again, and this is the hardest symptom of all for me to handle. It’s suffocating. I’d prefer pain honestly. My legs are useless. Sometimes I find myself reaching for things across the bed without so much as flinching my legs because it takes an unwarranted amount of energy to move them. I can’t say what is happening to me. Or what has happened to me. I know that every night I pray really really hard that the next day will be better. When I wake up the next morning, and things are the same or worse, I keep going. I take my daily pill cocktail, wait for relief, stare out of windows, and contemplate what a strange and sedentary existence I have. What else can I do but go on? It’s hard. It hurts. When I think about how long it’s been, I fear how long it could last. But I’m not giving up now. I can see the appeal, but I’m not gonna do it.

 

Chronic Fatigue Syndrome doesn’t kill you, directly. It’s rate of mortality comes from a scary little thing called suicide, and having suffered with this since age 9, it’s easy for me to see why that option can feel like it’s all you’ve got. It doesn’t feel like much of a life, laying in bed each day. Only hearing the sounds of life but not actually participating in them. It’s like smelling the aroma of baking bread and never actually getting to eat any. You watch entire seasons change, babies turn into toddlers, this Christmas into next Christmas, and you expected things to be different by now. You’d fantasized a certain life for yourself by the time you got to 25. And when that didn’t happen you said 26. And then 27. And now 28. I’m starting to forget the numbers. They’ve never changed anything before.

It’s really hard to understand God during these times. I grew up Catholic and have always had my relationship with God- but it’s very personal. I even imagine him when I speak to him, in a very specific location, as if a bulleted address on Google Maps. I think of him now, through darker and unhappy times and I think either he trusts me too much, or he forgot about me altogether. But would the master of the Universe forget about someone? So much goes into making a person and a life. I know that I am an incredibly tiny tiny piece of the whole, but still, a piece. And while in the context of eternity and potentially multiple universes we can feel incredibly small, I somehow don’t doubt for a second that my life matters, and so does everyone’s who is alive. I don’t say that with a lot of pride either. I say it because there is something solid and untouchable in me, something unstirred by discouragement, failure, despair, loneliness and tears. It says Keep Going, and so I do. But the truth is I don’t know what for and I don’t even know in what direction. Certainly I am lost. But it’s sort of for my own bitter curiosity that I won’t give up. I want to see what’s at the finish line waiting. I need to know this is not all for nothing.

I must be honest, I think a lot about how stupid I think my life is. I know that seems irreverent at best, but sometimes you just have to laugh about it. Today I was too fatigued to brush my teeth. My God! It’s so stupid! It’s so stupid it’s funny. You should see what I look like these days. Somewhere between Jim Carrey when he visits the Nut House in Ace Ventura wearing brown boots and a pink tutu, and an old senile man in pajamas on his front porch with a cigarette and a shot-gun. Sometimes I stare at myself in the mirror, not quite recognizing what I’ve morphed into. The steroids have puffed my face, my skin is pale and there are dark circles I never had until now. But more than that, it’s like the lights are out. What’s that phrase? A shell of who I used to be? Something like that. I feel like a caged animal and I fear that’s what I’m starting to look like too.

 

All my classy PJ's were in the wash.
Thanks for the clothes Grandpa!

Tonight I cried I guess because it all catches up to me once and a while and feels too heavy to keep in. My mom says we’re all due for a little meltdown now and then. I cried but what I wanted to do was scream, because I am physically nauseous from how sick I’ve been. How relentless it’s been. Day after day, hour after hour. When the weakness makes just standing up a chore that takes energy, my stomach turns. I’m tired of being sick and I’m tired of taking pills. I want to scream but I don’t have the energy for it, so I cry. By default.

 

When I cry I blow my nose really loud, hoping that it’ll wake God up from his sleep. I hear a rustling and when I look up, it’s Monty standing there, wagging his tail at me. He’d snuck in when my head was buried in my hands. Truthfully, I was happy to see him. It then occurred to me that Dog is just God spelled backwards…so maybe he is listening after all. Maybe Monty is God! I don’t know. And that’s the hardest part about moments and times like these. We don’t see how they fit into the grand design of our lives yet. All we see is what’s happening now. For now, there’s pain and suffering, and if God reads blogs, then I guess this is me asking him to take it a little easy. Maybe just for a day. Either way, I will still go to sleep with hope that tomorrow might be better. And if it isn’t, then the next day, or the next day or the next. Keep going something tells me, and since I have nothing else to do, I guess I’ll do that.

Health and Happiness and Keep On Keepin On.

 

A List of Mildly Pleasing Things.

Published on by Mary Gelpi12 Comments

The sound a rotary phone makes
When you hang up the receiver.

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The smell of tires
And how you know before you walk in
the door of the auto shop
that the computer will be old,
and the colors will be red and black.

The sound of ice in a glass
And a something liquid gold
pouring slowly in.

When Monty’s Tail Wags While He’s Sleeping.

Riding in a cab
In New York City,
going anywhere.
The urban slideshow
through a square cracked window
slows down the fast city.
and the driver mumbling
in a quiet language an American girl
who’s pretty
will never need to know.

The way Gwyneth Paltrow smokes cigarettes in The Talented Mr. Ripley.

the-talented-mr-ripley-gwyneth-paltrow-cigarette
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The second of stillness
When you drive under a bridge in the rain.

New showering products.

A woman tying a man’s tie.

The crinkling of a newspaper
When a man eats his breakfast
With one leg crossed over the other.

Being a woman
Wearing a dress
Smelling romantic
and the clicking of heels
on the old wooden floor
toward whoever spent the time waiting.

A fresh piece of chalk
on school chalkboards.
And the slowness and fragility
of that 90 year old librarian
Who stamps the due date in my book
with her veiny tissue hands.

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That feeling you get
When you kiss someone new.
Like everything is different
Though everything’s the same.

Health, Happiness, and Tiny Little Pleasures.

An Animated Version of My Sick Week.

Published on by Mary Gelpi14 Comments

I’ve finally reemerged out of my latest crash. I’m kind of tired of dedicating words to what being sick is like, so instead I’ll do it with GIF animations. Here’s how it went.

Monday: I tried to get out of bed, but it went something like this.

By Tuesday I was still lifeless and sick, so my mom brought  food to me in bed, which went something like this:

By Wednesday I’m  like this is crap! I’m going outside to play! Which went like this:

So back to bed I went, like this

Then I woke up like 20 hours later like this:

And then someone with enthusiasm calls and says “Hows it going Mary?!?!” and I respond “Great!!!”

Then after a long day of exhaustion, I try to go to sleep, which goes something like this:

Then alas I get to bed, and when I wake up, my body feels like it’s done this to itself all night…

Being awake feels crappy so I go back  to bed, like BYE WORLD!!!

Then I wake up to Bill O’Reilly playing from the living room…

Meanwhile Monty is bored to death with his owner so he decides to go out in the world on his own…

Then finally I wake up with enough energy to get out of bed and be a functional human being!

Which means it’s a PLAY DAY FOR MONTY!!

Woohoo!!

Health, Happiness, Sick Weeks.

Snow, Christmas, Crash, Repeat.

Published on by Mary Gelpi21 Comments

I’ve attempted to sit down and write multiple times this week but my eyes continue to grow heavy and I fall asleep with the light of the monitor on my face and an incomplete sentence waiting. Most of the family left to their respective homes on Sunday and it appears my body waited for them to leave to go ahead and crash–which is nice of it actually. I made it through Christmas Eve and Day with adequate enough energy and I was really grateful for that. If being sick now is payment for what I experienced with family this Christmas, then it was well worth it. I just love those crazy animals!

Christmas is by far my favorite Holiday. The lights, the soundtrack, a reason to be kind, the eggnog, the food and the family. I treasure it all. Since we spent this Christmas in Colorado, I began praying weeks in advance for a White Christmas; something I haven’t had in many years. It just makes everything that much more “Christmasy.” When I awoke on Christmas Eve, I saw that my prayers were heard. We had every type of snow that day. In the morning it came down softly. By the afternoon it was big, slow flakes. On the way to Mass it was small gusty snow, fast and twirling. I felt like a kid again. And being that we’re Southerners who are rusty in the art of driving in snow, we went about 15 miles per hour on the way to Church, leaving an impromptu parade of backed up traffic behind us. But you can’t get mad about traffic on Christmas Eve– Not in your Sunday Best while the sky is falling. I received more than I asked for; 6 inches to be exact, which is pretty substantial for this town. It continued to snow into the night, revealing a very real White Christmas the next morning.  My favorite part was taking Monty on a walk that evening. The night sky orange from the clouds reflecting lights, the atmosphere hollowed; a padded cave where your steps crunching the snow is all you really hear. It almost demands that you stand still, that you look up. There is a tangible quietness to snow and it was a real gift to experience it again.

Monty in the Snow, Night.
Monty in the Snow, Night.
Yum.
Yum.

I also really like this time of year because there’s such a sense of hope and possibility with the New Year. On a technical basis, it’s minor. It’s just a change in numbers. A 2 becomes a 3. But for human beings, where space and time matter, it marks an end and a beginning. As the numerical date changes, it’s wise to reflect on the past 365 days and think of what you want the next 365 to look like. Of course, as the mystics would remind us, there is no past or future. A New Years Resolution can only begin and mean something right now. Right now is all there is.

I didn’t make a New Years Resolution specifically, though I love the idea. I reflected on New Years Eve 2010, which I spent at my parents house, and it was Monty who I kissed at midnight. The next few days would involve a heavy crash and a hospital visit and some major contemplation about what to do with my life that I was slowly losing control of to health. I remember that last New Years Eve I thought well, at least the worst year of my life is over. I thought 2011 would be my sickest year, and that I could stuff it far away somewhere. Bury it. Burn it. Just put it out of sight and move on. And then I met 2012. In many ways 2012 ended up being my toughest year. Health-wise it was one of the worst. Emotionally it drained me. Personally it humbled me. You’d think after years of being sick I’d have it all figured it out by now. But I’m still learning. Feeling my way through the dark parts to find meaning, treasuring the good days, and holding out hope that this won’t be my life forever. 2012 was deeply hard, but another way to look at it is this: I survived. I made it. It’s over, but I’m still here. Like Caroline Myss says, “As long as you’re still here, you’ve got purpose.” I may be sickley and often seemingly useless, but I am still here, and I do feel underneath my lifeless body that I still have a lot of work to do. And if most of it comes from bed, so be it.

There’s a few other lessons I’ve learned in 2012 that I’ll take with me into 2013 on my way. Wherever that is.

I’ve learned how to be a house guest: That most people consider themselves clean and organized, and that every person’s definition of those two traits are absolutely different. All in all, people appreciate when you make your bed, so do it whether your hosts do or not.

I’ve learned that old ladies don’t like dogs without leashes.

I’ve learned that violence is not the answer and instead of trying to punch a fly in the face you may benefit from pausing and reflecting instead.

I’ve learned that even if my body is worthless, my mind is not, and it’s still possible to achieve things from a couch, or a bed…in pajamas.

I’ve learned that even if they’re the right thing, breakups hurt. They’re hard. Sometimes it really is time that heals those wounds best.

I’ve learned that every person is fighting a battle. I used to never talk about my issues, or even write in the first person for that matter. Now I have a public blog with everything out on the table and a lot of I, I, I. But most people do not. They keep problems and pain inside, protecting a sore spot somewhere, which is important to remember when they’re flipping you off in traffic or cursing your name from across the street. We all have issues, and it’s all OK. In my darkest times I’ve found reassurance that no one is alone in their pain.

I’ve learned that the best doctor is Dr. Mom.

I’ve begun to learn to swallow my pride. To accept help with grace. To admit when I can’t do it on my own. And that there is much more freedom than pain in those moments. There is real ease in surrender.

I’ve learned that regardless of the question, the answer is protein.

And that out of all 25 pills, nothing makes me feel better than laughter. Mine and others. For real.

I’ll take all of these with me. Into the future, to a galaxy far far away. Or to whatever state I end up in next. I don’t know what 2013 has in store for me. So far, I’ve basically spent it in bed. But that’s OK too. Because regardless of what 2013 brings to the table, I promise to keep on laughing, to keep on joking, and to keep making fun of the tragedy that can be life. In almost every punch life throws, we can laugh or we can cry, and in my experience, it’s just way more fun to laugh at it all. In short, I’ll keep taking 25 pills and making lemonade…or something like that. Happy 2013 yall.

Health, Happiness, 2013

Life at the Window.

Published on by Mary Gelpi7 Comments

I spent last Spring in a playground called New York City. My brother and sister-in-law had this great apartment in TriBeCa with huge windows and a doorman. As newly jobless, apartment-less, boyfriend-less- New York City felt like the perfect place to spend some time and  get to know myself again. I had lost all of my “identifiers ” and it was time to get in touch and adapt.  It was truly a treat  staying there while I reconfigured what my life was going to look like. My brother spent most the week in Boston teaching at MIT and Estee worked full-time, so I had this great little cube in the city to myself a lot.

Our cube with the light on.
Our cube with the light on.

My only responsibility as a guest there was to walk the dog, Lilly. Lilly was cool. Sweet and low maintenance, she was happy to spend day after day sitting on top of the heater with me and looking out the window to life below. I wrote, read, and occasionally played music super loud and danced alone in the living room. (One day I danced “the Dougie” too hard and exhausted myself for a week) If anyone were watching from the building across the street, it would have been quite a show. Lilly sometimes barked at a dog below or a UPS man unloading boxes, but mostly we just watched. It was a perfect, small existence for me at that window. New York City had a way of making me feel intricately connected to the pulse of life, even though I was sick and on the outskirts, and my only participation was mostly observation from the 4th floor. I never felt isolated in New York. Sometimes I ended the day feeling like I had interacted with so many people and in fact I hadn’t actually talked to anyone. There’s something so involved there, that even as a spectator I felt implicitly a part. I would watch the people walking their dogs or babies in strollers, laughing or yelling on their cell phones, entering restaurants and hugging friends hello, and it all made me feel incredibly human again. I could watch life from that window all day and never get tired of the sights. And most days, that’s all I did.

Life at the window.
Life at the window.

I really had to get used to the “free time.” I know that sounds like an illegitimate complaint, but going from working to not was hard to navigate. To strangers it sounds fun..”You’re so lucky! You don’t have to work.!”  But that’s kind of like telling someone in a wheelchair “You’re so lucky, you don’t have to walk!” Truthfully it can be extremely lonely and isolating having absolutely nothing but time on your hands, but possessing none of the means in which to do the things you used to. It took me a long time to adjust to not having a typical day schedule to follow. Such is life. We notice things more once they go missing.

It was surprising how responsible I had to be with my free time. You can’t just do nothing. Nothing is the gift you give yourself after you’ve done something. But if you’re not actually doing anything, the nothing part becomes completely sad. You have to be responsible. It occurs to me now how much security and diligence there was in my fulltime job. A schedule is basically simple. Follow the rules 5 days a week, get paid, go home. There are things you say in an office and things you don’t say. Wear and don’t wear. I worked at that gallery because that was the progressive step after college. It was safe there. I knew exactly what was expected of me and I was good at what I did. And on the 1st and 15th of every month I was paid 1,060 dollars for following the rules and doing my work dutifully. There was a time work began and ended. And there were two entire days a week you had to yourself. It didn’t matter what you did on those days. It only mattered that you showed up on the right days and were on time if not early.  Then all that was left was following the rules. Performing tasks. I do miss the stability of that old life. The one where at least I felt  like I knew what I was doing and where I was headed and what was coming my way. Now there is none of that routine or structure. There isn’t really anything expected of me now.  No tasks to check off, no paycheck twice a month. There’s no real order, and it’s a strange thing to very quickly lose something like that. There is ease in order.

As easy as it is to complain about work, to dislike your boss or co-workers, there is something very essential in human beings that gets fulfilled in just getting dressed and going to work every day; contributing  to the “whole” some way and getting paid to do it. Even if the work is  mundane or repetitive. Even if your co-workers are punks or your boss is a turd-sandwich, there’s something gratifying about good old fashioned compensated  labor. Life becomes pretty different without it.

Part of my biggest adjustment in getting sick has been surrendering to a schedule that I can’t control. I don’t know how I’ll feel one day to the next, what I’ll be capable of. I don’t know if Ill sleep at night for 12 hours or 10 minutes. (Or if I’ll be up at 2 am writing this blog like I am now)  So in a very bizarre way, the illness has literally forced me to live one day at a time. One moment at a time. What am I capable of right now? OK, I’ll do that. It has become that specific.  And I think after nearly two years of no “real” job and crashing my siblings couches, I am finally understanding and accepting life without schedule, rules, tasks, and order. Or what I was perceiving to be order. The funny thing is  now I see that even in my highly organized, scheduled life, I still wasn’t in total control. It only felt that way. It looked that way. I still got sick. Life still “got to me.” My life is no more or less in control now than two years ago. It is truly, just perspective.

My brother Nick encouraged me to read while I had so much downtime, and that was good advice.  Here I was writing all the time, but never reading what was done before me. And you need context in everything, especially literature. I still have a ton of reading to do, but I’m really glad I discovered the real joy of it. Growing up it always felt like labor– a requirement that didn’t interest me. Now I find real freedom in it. There is nothing like getting lost in a story. I admit it’s more fun to read than to write. There is anxiety in me sitting down to write. But there is total surrender in sitting down and investing in a story.

Anyway now that I didn’t have a schedule to adhere to or  specific tasks to perform every day,  I was now up to my own devices. I realize that sounds like a really spicy thing to say. But mostly it was  me in and out of dreamworld on the couch or sitting on the heater, looking out that window, and drinking coffee with Lilly.  Every once in a while we mixed it up. Like when I dressed her up in my hat.

Lilly wearing my hat with attached scarf.
Lilly wearing my hat with attached scarf.

Or put her in my laundry basket.

Say cheese!
Why are you doing this.

Or if it was a healthy day we’d walk to the piers and watch the joggers and boats.

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Contemplation.

As nice as our walks were, I think I was most content at that window. In general, I am happiest by windows. I gravitate in every house to the room with the most light. I like to see outside. Hopefully one day, I won’t be the girl at the window, but the participant outside. The subject of someone else’s observation. But truly, I ‘ve become happy with this spectator form of my life. I don’t think it will always be this way, but it has granted me a unique perspective. It has made me step back and examine. It’s given me stillness in a very fast world. Even sick in bed, I can still examine life, ask my questions, read and write for the answers. None of this could happen in my old busy life. There was simply no time for it. There was work during the week, and sick recovery on the weekends. Now I have a new kind of work. It doesn’t pay well (as in, it doesn’t pay) but my boss is cool (that’s me) and every day is “Bring Your Dog to Work” day. Maybe the best part is, I am never too far from a window. For me, for now, that is enough.

“Participate with joy in the sorrows of the world.” -J Campbell

Health, Happiness, Windows

My friend Gabe took this picture of me at the NY window at night. Thanks Gabe!

Night.
Night.

Sixteen Clementines

Published on by Mary Gelpi15 Comments

It is a dreary, rainy day in California today. I love it! It was this way yesterday too. I had been feeling a little home sick lately and now suddenly I have damp Louisiana weather–the in between cold, lonely drizzle outside. It’s superb. It’s so anti-California. Feels like home to me.

When I stepped out into the rain for our morning walk, I was expecting to make it quick since that what’s you do on days like this-stay indoors. But Monty seemed so happy frolicking around and it felt pretty good hanging around out there, that I just let him get wet and play in the mud and people laughed as they walked by. I’ve always let Monty get messy if he really wants to. There’s no real problem with it..dirt washes off! So we got dirty.

Mud.
Mud.

Health-wise I have been improving since the whole too weak to move crash, slowly but surely. My naturpath doctor received some blood work two weeks ago that confirmed I still have lyme disease, as well as two co-infections (one is Bartonella, aka as cat scratch fever..what the hay?!) and one parasite in my gut. All right!! This is good news though because they were definitive results and allowed us to move forward with a treatment plan. Since she is a naturpath she doesn’t use antibiotics to treat things, so combating the lyme this go around will be a little more complex. I could go into the details but I don’t even understand them entirely and it’s pretty boring anyway. It’s a crazy coincidence that my doctor studied a while with one of the top lyme specialists in Northern California, so we’ve got that working for us. If we can’t get it under control with her care, she’ll send me to him.

I forgot to mention that part of seeing the naturpath is going on a major detox where you avoid gluten, dairy, corn and you drink this protein shake all the time which actually tastes decent! After 6 years of convincing me to go gluten-free, my sister can now rest easy knowing I’ve made the step. For now anyway :) The diet actually isn’t so difficult to adhere to but that’s because my sister keeps the house stocked with stuff I can eat and pretty much brings me dinner every night. You may ask yourself, what do you eat? The answer is yams. I eat a lot of yams. Kidding. Well, I did eat a lot of yams in the beginning. But the point is to mostly eat fruits, vegetables, and a lot of protein. So that’s what I’ve been doing. Yesterday I ate sixteen clementines. For real. I can only eat at least four at a time. They’re just so small and addicting. I don’t know that I’ve been able to tell exactly what difference the diet is making since there are so many variables right now, but I do know it’s nice to feel good about what goes into your body. I admit I never felt great mentally after stuffing my face with fudge sickles at 2 am. Mmmm fudge sickles. That sounds so good right now.

Since I’m pretty obsessed with the Holidays and Christmas in particular, I told Amelie and Keegan that since I’m a sick kid they have to grant me a wish like the Make-A-Wish-Foundation advertises in the commercials. (On top of housing, feeding, and caring for me, of course.) My wish was for a real Christmas tree and the day after Thanksgiving, we did it! She’s a real beauty. If she had a name it would be Anastasia. We’ll hang small milk bones on the bottom so that Monty will tug at those and not the real ornaments. There’s nothing like the smell of a real Christmas tree. It’s like Winter, Happiness, Warmth and Love all wrapped up in a smell. On top of that I’ll be blaring Christmas jams and watching Elf on repeat which my brother-in-law is really excited about. What can I say, I’ve always loved Christmas.

Apart from yuletide, I’ve been watching Woody Allen movies, taking pictures of people’s windows, and writing things late night I still don’t entirely understand. I still need to watch Crimes and Misdemeanors which I hear is one of the best..but Annie Hall is so ridiculously lovable it’s been hard to forget.  I loved Manhattan too but it made me nostalgic for Annie Hall. I liked Melinda and Melinda a lot and also Alice. Husbands and Wives may have been a little too neurotic, and Midnight in Paris was the best! I really loved that one, and Owen Wilson’s character. Too good. Tonight I’ll watch Play It Again, Sam and then maybe I’ll get back into reading. Somehow I kind of stopped. Anyhow, I keep taking Monty on walks around our complex and I love seeing people’s windows from the outside. The blinds are always closed but people put little decorative pieces to view from the outside, and I like seeing them. I don’t really know why. So I started photographing them. I also realize it ups my “creeper” level a few notches, but I can’t help it.

Dog. In a Sweater. YES.
Dog. In a Sweater. YES.
Batman? Is that you?
Batman. He lives.
Cups.
Cups.
That cat.
That cat.

 

 

 

 

 

 

 

 

 

 

 

Health, Happiness, Window Shopping.

We Are the Leaves

Published on by Mary Gelpi25 Comments

I’ve been hanging out with a lot of trees lately. I take Monty on walks in the hills behind our apartment. It’s where we hear the coyotes howl at night. I don’t know where they go during the day. The more I’m around the trees the more picturesque they become. Suddenly I find myself staring at one tree for a really long time. It’s just standing there, its leaves making gentle sounds, and I feel captivated like I’m watching some kind of brilliant theatre. It’s just a tree! But hang out long enough with them, and they share a little wisdom. I started photographing them on my phone because…I felt like it. And my phone is more like a camera with phone capabilities.

When I was a kid I used to think that wind was caused by trees. In fact I may have thought that up to an unforgivable age, but science was never my strong suit. But in my simple brain, since when it was windy I would hear the rustling of branches and leaves, I equated wind with tress. Finally during a dead, wintery day in Colorado, the cold blew against my face and I looked around at the dried up trees around me. There were no leaves rustling, the dried skeletal branches cracked, and it was clear that wind came from somewhere else. Currents cause wind, which in turn rustles the leaves. The real culprit was something invisible yet immensely powerful. So yesterday I sat in the sun and listened to the leaves rustle while Monty chewed a tennis ball to bits. I watched as an invisible current moved through everything and it struck me why I thought the way I did about wind as a kid. It also had me thinking about human beings and our respective passions and purposes. When you’re really excited about something, whether its writing or painting or singing or chemistry…it doesn’t really matter what…there’s something greater moving through you and guiding the art form. In fact I think that’s one way to define genius, or greatness or expertise– opening oneself enough to allow something invisible and quiet to move through you, leaving either art or authenticity in its path, and each time raising the bar. I don’t see being creative as only limited to the arts. I think there are creative ways to do math, and practice politics, and learn history. There are also creative ways to love someone, dress yourself, and give gifts. It hit me there under the sun, that we human beings are the trees. The creative and appeasing truth is the current, and individuals are just the rustling leaves making the noise.

“Art is the lie that enables us to realize the truth.” -Picasso

Health, Happiness, Trees

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The Day I Tried to Punch a Fly in the Face.

Published on by Mary Gelpi11 Comments

I could tell you a lot of things about my life right now. That once again it’s 4 am and I can’t sleep. That once again Monty has gas but I love him too much to kick him out of the room. That the Chinese doctor told me not to take my pills today and so I haven’t. I feel the effects of it. I have some fear about it. Some hesitation. But I have the same fear of a life dependent on pills, so either way it’s fighting demons. I don’t mind being awake when the world is sleeping. So many days I’ve missed out. Slept through. Called in sick. Night is my time to take life back. I could tell you my music of choice at night when I can’t sleep–lately it’s Tchaikovsky (Swan Lake) but tonight it is Radiohead (In Rainbows) and I’m deciding whether to keep squinting hard and trying to force sleep or to give up. Give in. But since the only cure for insomnia I have found is waking up, I give in.

When I open my computer to begin, a fly immediately lands on the screen, undoubtedly drawn to the light of the monitor. When I scroll the little mouse arrow under him, he jumps. Flies away a second. Then he comes back. I play “tag” with my computer mouse and a fly for probably way too long and smile at this activity. What makes me smile more is that we have this big joke in my family that my dad would be reincarnated as a fly. He used to do this hilarious impression (often at fancy dinners, with no shame) of a fly, rubbing it’s little legs together the way they do. Half of the people laughed because it was funny and the other half probably laughed out of discomfort or something. He was such a nerd. This was his dinner entertainment. I wonder if this fly I am playing computer mouse tag with is my dad. Then it starts rubbing its spidery little legs together the way my dad used to when impersonating them and I smile bigger. Because these are strange anecdotes at 4:14 in the morning and I’d prefer to be getting sleep. But then again I would have missed the fly. The fly and all its mystery.

The Fly.

There are a lot of fly stories concerning my deceased father. Like at his funeral when my sister started crying and one landed on her shoulder. Most people would call these things silly, coincidental, random or meaningless. And that for sure is the easier belief. Faith requires energy. But it almost seems like doubt steals it. Sometimes it appears more attractive to trust nothing and be skeptical of it all. But there are incredibly real moments in my life, where explanation just doesn’t work. It’s beyond science. It’s beyond religion. It’s more along the lines of intuition, instinct, and of course, an awakened state of consciousness. It is really amazing what we can see and access when we are awake. But I think we’re mostly sleeping.

In early September I was  beginning to really resent my situation. I was physically feeling worse and worse. Everyday activities were becoming harder and I was having to rely on people more than ever. I was beginning to resent the fact that I needed help, which is, insane. I should have been thanking every star in the sky that I had help, but I was too busy being upset that my life didn’t look like what I wanted it to. I was really irritable one day. I was short with everyone. I felt angry, sad, and misunderstood. I needed help but I didn’t want to ask for it, so I resented those who tried. Fed up over something stupid, I took Monty on a walk. We walked up “the hill” that presumably was what put me over the edge after walking up it once a day for a week and then facing a monumental crash. Anyway, at the top of the hill was wide open space for Monty to run and for me to think or yell or curse. On that day I let Monty run while I unloaded some words at the universe. I cursed and yelled because no one could hear me. Except maybe some cars that drove by slowly, and at least they had a story to tell later. (Yeah this girl was flipping off the sky and cursing about fibro-vagina or something?) Pretty soon, this fly landed on my face. I swatted it away and it immediately landed back on my nose. Again I swatted. Again, it returned. I was in such an aggravated state, I wanted to punch the fly in the face. I remember thinking those exact words: I want to punch this fly in the face. When I say the fly would not leave me alone, I mean it. For at least five minutes I let Monty run, let my tears fall, and relentlessly swatted away this fly while also trying to punch it in the face. As if that’s even possible. Fed up, I told Monty that due to a CERTAIN INSECT THAT WILL NOT LEAVE ME ALONE, we had to walk home. Monty looked at me like the psycho that I was, and then we started back down the hill. The fly followed.

I started to cry. All I wanted was peace. I was so upset and felt so alone. My life felt out of my hands and I had become completely reliant on others. I’m always the guest on someone else’s couch. When will I sleep on my own couch? I’m always going to be sick and helpless. These were the thoughts that were circulating. As you can see, they are pretty negative. They weren’t helping me. They were the cyclical mental thoughts that dig you deeper in the hole. The fly continued to dart at my face and I continued to flail my arms in what I think were actual attempts at punching it in the face or more simply, just killing it altogether. But to passers-bye, dear God, I must have looked insane. Finally, near our complex I began to calm down. It finally occurred to me; our little joke about my dad returning to earth as a fly. As I remembered I yelled “Seriously dad this is NOT the time!” So now I was punching the air and talking to a fly which I was beginning to believe was my dead father. Want to be friends?

The truth is, that was the time that I needed to be bombarded. The most effective thing that fly did was make me stop. And examine. And get to the truth of my experience. I had been feeling so alone. But the truth was I had love from all sides. I had family to carry me when I couldn’t do it on my own. It was just time for me to humbly accept that not everything was going to be on my terms, and that’s OK. You can still be happy down another path. Once you stop fighting it. That fly relentlessly flew at my face for at least 10 minutes, while I relentlessly tried to kill it. But by the end it had gotten through. Something told me, something from inside, that fly was a reminder. That life wasn’t over. That I wasn’t alone. That I shouldn’t be so irreverent about living. I was still here. Still breathing. And so I still had purpose.

I approached our front door, now smiling at the events of the last 15 minutes. I had tapped into a different energy. A better energy. All thanks to that really, persistent,  annoying fly. Whoever he may be.

Health, Happiness, The Fly.

The Importance of Catching Balls.

Published on by Mary Gelpi8 Comments

The other day I didn’t have a lot of energy (shocker) but Monty did (shocker).  I was throwing the ball for him inside the living room and noting what an expert catcher he is. Like the dude jumps crazy high and catches basically every ball I throw. So I started recording him. Because I have time to do crap like that. Then it was such a beautiful day outside I said screw it, if I can throw a ball in here I can do it outside too. So I brought him outside and recorded all the different ways in which Monty catches a ball. Then I made a movie out of it and put it to some fun music because video editing is another one of those things you can do from bed, and again, I have time to do crap like that. Woo woo. So, below is the result. I guess I realize that Monty makes me happy in so many ways and even watching him jump to catch a ball makes me laugh. Now we all get to watch him. And the angels rejoiced.

Health, Happiness, Monty

*Note, you can’t currently watch this video on a mobile device like your phone because of a third-party licensing issue with youtube…Booo, I know. I’m working on it.

The Story You Tell Yourself

Published on by Mary Gelpi17 Comments

It is sunrise again in California and I am reflecting on the last few months of my life. I just dropped my mom off at the airport to fly home to tend to other business. Newsflash, she has a life outside of nursing Mary back to health! I’m really lucky she was able to come. She did an incredible job as most Dr. Moms do alongside my sister and I am much more functional than when she arrived a few weeks ago. I can climb the stairs easy peasy this week–that is something new.

I feel a lot more at ease since she arrived and helped me to process some pretty heavy thoughts I was having. For one thing, I kind of thought I was dying, because I’d never felt that bad before and I imagine death must feel like something close to that. It’s pretty unsettling feeling like you can’t walk or hold a brush to your head or take a shower. Forget climbing stairs, I was scoring my days on whether I could walk to the bathroom or not. Since then my strength has slowly inched its way back. I still do very little physically throughout the day as to not overdo it, but I can feel some energy where there was none before, and for that I am really grateful. I’ve been drinking protein shakes from the naturopath doctor three times a day along with 12 other supplements alongside my normal pill cocktail. I’ve been drinking Chinese tea from Dr. Xu that tastes like ground up birds nest and getting acupuncture twice a week. My B12 was low so I even learned how to give myself a shot…in the butt. It’s impressive. But anyway, it’s helping. All of it, I think, is working in different ways and putting Humpty Dumpty back together again.

I notice that every day has it challenges. Mine has different uncertainties and struggles. Will I be strong enough to climb the stairs, will I get to shower, will Monty and me save the world?! And the truth is I just don’t know. None of us do. There is no certainty about what will or won’t happen tomorrow. There is just here and now. And I notice that when I examine my life with clear hindsight and an open-minded eye, I see that it’s not bad. Like at all. It’s actually kind of enjoyable! I’ve gotten to spend time with my sister and brother-in-law that I never would have had otherwise. I’m lucky to have a mom who was able to fly out at the drop of a hat and give me some much-needed help. I get to read and write as I please. (Even though it’s mostly from bed.) I get to spend ample time with my favorite person, Monty, and I get to put my very little energy towards something positive–writing, humor, optimism, and good news. There are a lot of outcomes of this seemingly crappy situation that are not themselves crappy. They’re more like great. And that always gives pause for reflection. But trust me, it’s easy to go the other direction. The slightest tip of the scale and I could see things very differently. Darker. And I have those days sometimes. I could say it isn’t fair. I could say this isn’t the life I wanted or signed up for. I could look at all the healthy people with their functional lives and long for that to be mine. But, like Iyanla Vanzant says, that’s a life path that doesn’t belong to me. So it’s important to let it go. As long as I try to get back something that was never mine, I will suffer. As long as I tell myself a sad story, I’ll pay.

What’s your story morning glory?

We tend to think we know best for ourselves. And many times that’s true. But the problem with the human experience is that we are stuck in the mental limitations of space and time, so it’s hard for us to see our lives in the context of eternity. But that’s the truth of existence. We’re just a small part of something much larger, and we aren’t meant to see all of it at one time. I think we’re meant to just hold on and enjoy the ride, and when it’s a shit show, like my life the past year, you hold on tighter. You pull in people to help. You acknowledge there is something bigger than you, and focus your energy on balance. On acceptance. On inner peace.

The thing is, you can’t just tell yourself a happy story about your life and you’ll be happy. You have to believe the story you tell yourself. For some reason it’s like we’re conditioned to believe the sad story more than the happy one. And through the dark times especially, it’s not as easy to find the pretty things, but they are so valuable when you take time to find them. That’s why acceptance is so important. Once I stopped focusing on the happy life I would have once I got better, and instead focused on how to be happy with the life I have now, I found much more success. And it takes work. I have to remind myself everyday of the things that I am lucky for, and most of the time it’s a no-brainer. It’s family. But it’s easy to forget. To slip up. To fall into the humdrum of life and feel like you’re not where you’re supposed to be. And maybe you’re not. But most of the time, life just requires us to be present where we are.  We already have everything we need, we just have to be aware of it. In The Untethered Soul, Singer wrote that “Life is surrounding you with people and situations that stimulate growth.”So before you judge your life and your hardships, try to acknowledge that this is what you need in order to become whole. In order to become who you are– the best possible version of yourself. It sucks sometimes. It’s hard. Don’t I know it. But if in the end it forced you to grow and become awesome and happy, well then, it’s worth it isn’t it? Maybe it isn’t such a sad story after all.

I’m learning I have to be careful about the story I tell myself. Because if it’s a happy one, that will be my life. But if it’s a sad one, that will be my life, too.

Health, Happiness, Stories.

It’s OK To Ask For Help. Help!

Published on by Mary Gelpi7 Comments

It has taken me a long time, a very long time, to admit what I am about to. It’s not a very big deal at all, but I’ve spent a long time fighting the very notion of it, and in the end it’s completely true; I am totally reliant on the help of other people right now. I need help. I can’t do life on my own. It’s been this way for a while and though many times I’ve picked myself up by my own bootstraps as they say, and I’ve done all I could to live a life that is mine and have a struggle that I conquered, it just isn’t the case. And why that would be so hard to admit or accept for me, I have no idea. It must be the ego in me. It doesn’t want to admit I need help, but the simple truth is, I do! A lot of it. It’s all so silly. Sometimes life is hard and sometimes you need help. It’s OK to ask for it. And if someone offers it to you, you should accept. The world is full of good people and many of them are happy to help someone out in need. We’re in this together people! Independence is important. Solitude is a gift. But there are 6 billion people on the planet and I don’t think we were put here to suffer alone. This is where and why love exists, and I am seeing now that I need to channel my old fire for autonomy into pure grace and gratitude that I have people who are willing to help me when I’m down. Even when sometimes I don’t deserve it. When I have nothing to offer back. When I resist it. They give it anyway, and I am incredibly lucky for that, for them. It’s really time for me to let go of the anger that I can’t do it on my own. (I think they call this surrender.) Little by little, I feel my pride give way to acceptance. It hurts. It’s hard. It doesn’t always present me in a very pretty light. But there is freedom in admitting you need others, and I’m getting there; slowly letting go of a life path I had in mind that didn’t work out the way I wanted it to. Well boo hoo. It happens. The universe had other plans and here I sit in California listening to coyote puppies howl outside and trying to understand grace. I know it won’t always be like this. Things don’t stay the same. And the truth is it doesn’t matter whose couch I’m on or which family member I’m bumming off of. The key to my happiness is just being where I am. I really need to let what was, go. Let what could have been, go. There is just this, just where I am now.

The model citizen in this whole experience is easy; It’s Monty. Two years ago he happily rode in the backseat with me after the day at the hospital–let me use him as a pillow on the hour drive home to my parents house. It was a gradual move-in, but Monty seemed like he knew we were there for the long haul and quickly embraced our new house. (He was right.) I remember waking up one morning to find my mom feeding him cantaloupe off of a fork and laughing. Marc took him to the prairies with him and they quickly became partners. When I was too weak to play he slept. When I was sad he would fart or do something equally meaningless but would somehow lighten the mood. When I decided to go to Colorado, he got on a plane with me and we went, and he didn’t lose his temper when we were delayed for 6 hours in the Houston airport. He played fetch with a rubber band and then he waited patiently. When I came to California he came too, swam everyday and had a really good time. When we moved into an apartment with my sister and brother-in-law with not a lot of space, he made himself at home. I’ve always wondered what Monty in a bad mood would be like. I’ve never seen it. Every day is literally the best day of his life. He wakes up so excited. Could I be like that? It seems worth it to try. I’ve never seen Monty stub his toe and then yell “mother fuckerrrr!!!!” like I did the other day. Or complain about the agenda or the situation or his crappy pebbly food. It’s like all he does is love and embrace everything. His energy is really good to be around and I don’t take it lightly. I know I’m a little obsessed with him and people say “It’s just a dog, Mary.” But what does that really mean? I’m just a human. Monty seems to have something figured out that I don’t and I don’t see the problem with learning from another species. Some things, they just get. Anyway, it’s fun having him along.

Model Citizen.

He is just another part of the “Help” I’m receiving. The best part about dog help is that you don’t really have to ask for it, they kind of just know. So whether it’s Monty keeping me company in bed, my sister carrying me up the stairs, my mom counseling me through dark stuff, or a million other ways in which I am being helped by other people, I am finally comfortable admitting that I need it and I need them, and that’s OK! We have a tendency to want to do it on our own, but I promise it will be easier when you don’t go at life alone. Especially through the rough times. Maybe one day I’ll be able to return the favors to my friends and family. Pay it back. Or forward. Technically I’m in debt to a few family members like a jillion dollars but one day I tell them, I’ll pay our bills and take us all to Hawaii. Or I’ll do the house chores for them when I’m on two feet again. Or I’ll just keep being the lifeless girl on the couch who tells jokes every now and then. At any rate, I’ll keep trying, and I’ll continue accepting the help from the troops who were called in.  As hard as things get, it’s nice to recognize that I’m not in it all alone. Dare I quote the Beatles “I get by with a little help from my friends?” Oopse, I just did. Well there you have it.

Health, Happiness, Help!

Good News.

Published on by Mary Gelpi7 Comments

I never write on Sundays, but I have a little energy today and after a sick and cloudy week, I’m taking advantage of some mental clarity. The truth is I don’t have a lot of news physically. I have been the weakest I’ve been in my life. It’s a little nuts. It feels like trying to move through maple syrup. So life has been in slow motion, literally. But as always, I have help and constantly remind myself how lucky I am for it.

The real challenge with this latest crash has been maintaining emotional resilience. I remind myself of the same idea each time it gets overwhelming; this is only temporary. And when times are golden and everything is going perfectly, that will be only temporary too. The point is to find inner peace and joy that is resilient through circumstance. So just look at the bad times as intense training. Training isn’t forever. At some point you go out into the game and test your skills. And no doubt, the world will always provide you with situations in which to test yourself and what you’ve learned. This year has had a lot of training and a lot of tests, but a part me feels that I am only just beginning to understand any of it.

Since I have a lot of down time, not moving and all, I do a lot of weird things. Like look at nothing out of a window for a long period of time, not really knowing how long has passed when I snap back to present. Sometimes I listen to Debussey’s Claire de Lune over and over and over and just feel the aliveness of a song like that, even though I feel like only a half-alive body. I watch French movies on Fridays because verbally, it sounds nice. French Movie Fridays. Also I love French movies. I write down things in my notebook that I don’t immediately understand or know from where they come; sometimes I just feel like the person holding the pen, channeling something else altogether, something separate from me. Deepak Chopra would say there is no separate, there is no you and no me. Each person manifests the entire universe, all of the people, and the source itself, within themselves– thus separation is just a human illusion. This is why when you hurt someone else, you hurt yourself. This is the oneness found in “waking up.” This is how he explains the part of you that isn’t born and won’t die. It embodies it all, and it is eternal. So I guess some of the things I write down are being pulled from an all-access consciousness that has always existed. I don’t know. Maybe getting sick is what it would take for me to stop and pay attention, to finally write down dormant words, to know what it is to be alive. I just know sometimes I write things that are far more intelligent than I am and I don’t even feel right taking credit for them. Except the White Girls on Facebook post, that was me. :)

There’s a funny phenomena that happens when I’m sick: Once I start to feel better and recover, I can never remember how sick I was or how bad it felt. I can imagine it but I can’t feel it. It’s like my brain deletes the sense memory of it. I have read that this happens to women after childbirth, and I guess it’s an evolutionary survival mechanism. If women remembered how bad it hurt, they’d never have more babies! It’s like the worst hangover you’ve ever had. You swear you won’t do it again, but then the beer tastes so good and the buzz is so nice! I don’t know what the meaning is behind not being able to recall precisely the physical feelings, but being this weak and incapable feels pretty burned in my mind by now. I may not be able to access these feelings again once I’m better, but what I need to remember is that shit, life is fragile. One day you wake up and you’re too weak to walk and your mom and sister have to feed you. It’s not all pretty, but I know there is meaning in it. It’s easy to throw up your arms and scream WELL WOE IS ME,  life is unfair and none of this matters. And I’ve done that some days. The problem in doing this is that the very conclusion leaves your experience meaningless. The suffering is the hard part, but if you can hold on, if you learn to live anyway, then you’ve transcended the pain and evolved and it wasn’t for nothing; growth can never be bad. Following the pain always comes pleasure, even if it’s a simple change in perspective. Plenty of people have experienced far greater tragedies than me and come out on the other side– happy and wise. Like my mom for instance, who survived the death of two husbands, but didn’t succumb to darkness and managed to emerge happy and loving.

The goal in all of this for me is not just to stay positive and hopeful, but also to keep my perspective wide and my problems right-sized. This is just a moment in the context of eternity. It’s still really hard but it’s not forever and I’m not on my own. It’s easy to feel like the world is really big and you are really small and your little problems are terrible but that they don’t really matter. But they do, and you do. The way to make them matter most is to conquer them– with humility, grace, whatever you got. Everyone has their battles and each leads to their own lessons and outcomes, all necessary for the evolution of the world. But we all have to do our part. I don’t pretend to know how it all works, and I don’t think we’re meant to know the whole truth in this limited dimension we live in. That may explain why I had a dream last night that TRANSCENDED TIME AND SPACE and I have no idea how to put it into words. I probably sound like a kid during his first experience of dropping acid, but some things we just can’t fathom on earth. And that’s fine. We just need to do our best.

So I’m going to keep trying. Keep hanging on. Keep reading what the Greats have to say and try to make sense of it all. It’s been a challenge to stay optimistic and happy, but I know it’s necessary and I will work just as hard at that as getting better physically. In that light, I’ll introduce a new project that begins tomorrow. I’m going to report a few minutes of only good news every day for 30 days. I’ll begin with personal good news (like, I had enough energy to take a shower today!) then report national good news and then worldly good news. The idea is simple- I’m too young to be cynical. My situation is depressing enough and I don’t want to keep watching the news to see how crappy the world is and how bad people are. It’s important to stay informed on events, but I think it’s just as important to see the good things people are doing and the positive stories too. So that is the newest project and I will post the first video tomorrow around 6–that seems like a newsy time doesn’t it? I will always wear a plaid shirt because plaid makes me happy and I have a lot of them and we’re striving for good vibes here. To give you an idea of things I won’t be talking about, here is the backdrop to my very high tech news desk.

Watch the good news at goodnewsinplaid.wordpress.com.

**Addendum! I jumped the gun on my 6 o clock timeline. I’m a little behind. But the good news is now up at goodnewsinplaid@wordpress.com. If you have good news you’d like me to read on air, send it to goodnewsinplaid@gmail.com. It can be anything from your little league team won to you’ve been constipated for a week and maybe you finally had a bowel movement. If it’s good, it’s good.

Health, Happiness, Plaid.

How to Hang On.

Published on by Mary Gelpi12 Comments

I came across these words in the middle of the night last week when I was really sick and couldn’t sleep. I was feeling scared and anxious–of what I wasn’t exactly sure, but there was some sort of doom over my head and I didn’t know how to relieve it. This passage helped. Today my mom read to me the same excerpt out loud while discussing life and love and hardship. I figure twice in seven days is enough of a sign for me to pay attention to the words, so I thought I would share them here as well. They are written by the mystic Joseph Cambpell.

The loss of a love and the pain of a broken relationship is an overload of projection. That’s all it is. In youth, your whole life is this wonderful dream that “This is It”: this relationship is the fulfillment of my fantasy and I can’t imagine life otherwise. No argument can quell this feeling of total projection, of everything in the other one. I guess we can all recall an episode of an adolescent relationship that seemed to be the all-in-all and then went to pieces for some reason.

When a relationship breaks off, it takes a person a little while to settle and find a new commitment. It’s after the breakoff, when there is no new commitment and life has been divested of all of its potentials, that this painful reaction takes place. For some people this is a dangerous period.

The psyche knows how to heal, but it hurts. Sometimes the healing hurts more than the initial injury, but if you can survive it, you’ll be stronger, because you’ve found a larger base. Every commitment is a narrowing and when that commitment fails, you have to get back to a larger base and have the strength to hold to it.

Nietzsche was the one who did the job for me. At a certain moment in his life, the idea came to him of what he called “the love of your fate.” Whatever your fate is, whatever the hell happens you say, “This is what I need.” It may look like a wreck, but go at it as though it were an opportunity, a challenge. If you bring love to that moment – not discouragement – you will find the strength is there. Any disaster you can survive is an improvement in your character, your stature, and your life. What a privilege! This is when the spontaneity of your own nature will have a chance to flow.

Then, when looking back at your life, you will see that the moments which seemed to be great failures followed by wreckage were the incidents that shaped the life you have now. You’ll see that this is really true. Nothing that can happen to you is not positive. Even though it looks and feels at the moment like a negative crisis, it is not. The crisis throws you back, and when you are required to exhibit strength, it comes.

The dark night of the soul
comes just before revelation.

When everything is lost,
and all seems darkness,
then comes the new life
and all that is needed.

Health, Happiness, Hang On.

A Call For Positivity.

Published on by Mary Gelpi19 Comments

Good morning world, it’s been a little while. It’s 4 am in California and I have to say I’m OK feeling wide awake despite the indecent hour. I feel like I’ve been in a sedated state, in and out of consciousness for the last week–more out than in– and it feels good to finally feel alert enough to touch base with myself again. I have never been this sick before, at least not for this long. It’s beginning to make my other sick days feel more like mere child’s play. They’re nearly laughable when I think of them now.

I move when I can, which isn’t very often. It’s difficult to do basic things for myself these days and it sucks to have to ask, but that’s where I am, so I’m trying to make peace with it. Walking is really difficult and the weakness gets overwhelming. It sort of feels like trying to walk underwater–like someone smothered all of my joints in honey. Anyway, being stationary for such a long period of time isn’t super fun (for me or for Monty) and sometimes the mental housekeeping can be harder than the physical. It’d be nice to lose myself in the distraction of anything physical…tennis, shopping, drinking with friends, a road trip or camping! But it’s all out of the question, so I am left to my consciousness and the quiet of days as the world around me spins on without pause. I know it’s vital that I stay positive; that I don’t succumb to the fear and despair lingering between wakefulness and sleep, and that I surrender to where my life has me for now, and that I remain precisely clear about the difference between that and giving up. I am always going to pursue the healthiest routes and happiest choices, but I also need to just exist where I am- which right now, is immobilized in my sisters apartment. When I try to move around I am worse the next day, so it’s bed rest for me. Not much of a choice anymore.

The good news is, I have help. My sister has been doctor for a while now, while my brother-in-law insists on eating when I don’t want to. My mom flew in on Thursday so now the help has help and I am lucky for all of it. And Monty too of course. He’s a mental help to us all, and when things get sad or heavy somehow he finds a way to make us all laugh.  I think he’s anxious for me to be back on two feet but he’s patient as always. He’s taken to my sister and brother-in-law, like he knows they’re the ones with the energy. They’re the ones who will throw him the ball. So he plays fetch with them and my mom and when he comes back in he trots straight over to whatever piece of furniture I am using as a bed and curls up next to me; content until the next time he needs to go out. He is a constant reminder to be in the present moment. That is something that dogs just get and humans mostly miss.

I am going to be very honest and say that emotionally I’ve been kind of a wreck. I’m not a huge crier but for some reason when I fall into these weak, dizzy crashes, tears just roll down my face. I don’t even necessarily feel sad when it happens. It’s like this strange cause and effect I don’t feel I can control. So, I let the tears come. I try not to harp long on any negative thoughts or fearful worries; they are not only useless, but detrimental at this point if I give them too much pause. My mom told me “You can’t afford the privilege of a negative thought right now,” so I try to stay away from them. If they come, I let them, and then I let them leave. I am beginning to learn the art of detachment. Or I’m getting a crash course in it. I don’t know that I have another choice, and I must say I’m getting pretty good! I’m writing about this because I know that so many people have felt what I am feeling now, and many of them have not had support systems behind them. I want anyone to know who’s sick or troubled and reading this that it’s OK to want to punch the wall, scream really loud, curse the car door and earth, the universe, or God. I have done all of these things in darker moments, and sometimes a good scream or cry is necessary. It’s OK. Sometimes if I’m too tired to yell, I just flip off the sky. As if the clouds brought me to this point. It’s like the most passive aggressive protest I can demonstrate, but since my arms down to my fingers are weak, I don’t leave it up there very long, which usually leads to cursing. Haha. But what I also know is that anger and screaming and crying and cursing…it just doesn’t get me anywhere in the right direction. It doesn’t move me along. It’s really easy to be mad at a situation; to be pissed off or sad or claim unfairness. But where that gets you is stuck further in the predicament you were already in, just now you’re a miserable person in a shitty situation. It’s just plain more interesting to be a happy person in a shitty situation. Try it! When people ask how I am I say “Terrible! And it’s the best day of my life!”

My goal now is to stay as happy and positive as I can, which so far has been extremely hard. But I’m going to keep at it. I’m letting negative thoughts come and go and I follow them up with something better. Something true. I constantly remind myself of what I have; love, a family that gives a shit, good doctors, good friends, and the best dog in the world.  A few examples; my friend Kaitlin aka Matt Damon texts me our inside jokes throughout the day, often consisting of lines from Billy Madison, Orange County, or philosophical thoughts on the Golden Girls. Sometimes a one word text can make me laugh, and that feels like a step in the right direction. My brother Nick sends me interesting and positive reading material or funny pictures of the baby. My Stupid Friend Jess sends me her favorite facebook statuses of the day, which are always terrible. And hilarious. My mom and sister let me cry when I need to but are always encouraging, reminding me of the truth, and that is so necessary at times like these. And me, I’m kind of just hanging on. I don’t really feel like I’m driving the car to my life right now, but, I can at least control the music. Is this metaphor too much? Anyway, instead of playing like, Coldplay and Radiohead, I’m trying to play happier and motivating things. The Black Keys, Vampire Weekend, The Rolling Stones, and Ke$sha. Come on, that Tic Toc song can make anyone dance. We’re out of the metaphor now, I actually like listening to that song.

So, that’s where I am. It’s a really rough time, but I know it isn’t forever. And I know the answer to it all is not in anger or sadness or self pity, even though these reactions and dispositions are often the easier, default choices. It’s funny how conditioned humans are to respond this way to stress in life–and how absolutely worthless it remains. You’d think after 2000 years of civilization we’d have gotten it by now. Even the dogs get it! Anyway, as I sit immobilized, a heat pack on my muscles and the smell of BenGay circulating in the air, I’m beginning to retrain myself. My body is crazy weak, so I’m going to work on a stronger mind. I know that every situation is an opportunity to grow, and I guess it comes down to whether you want the experience to leave you larger or smaller than you were before. My hope, of course, is to walk away wiser and stronger. And while it’s the harder path to take, I know it’s not impossible, and so many others have endured far worse and done just fine. In the meantime, I gotta stay positive. So send me funny stuff! Among the 25 pills, laughter is still my best and favorite medicine.

Health, Happiness, Hanging On.

A Shit Show.

Published on by Mary Gelpi13 Comments

I don’t know of any other way to describe the past week except as a shit show. And maybe that points to how juvenile I am, but I honestly can’t think of a more sophisticated word. If you read my last post, you can see that I was in a bit of a bad way last week. I crashed really hard last Monday and was feeling pretty deadly. We did the normal protocol and quadrupled my hyrdrocortisone and I mostly stayed lying on the couch or in bed, researching the little amount of money spent on this illness and writing somewhat of an angry blog about it. I don’t usually like to succumb to moments of mental negativity like that. I think anger has its reasons for existing, but I have always wanted this to be a place of optimism, humor, and hope. So I hope I didn’t put too bitter a taste into the community here. I also need to remember that more research than ever is being done, and while we do have a ways to go, we’ve already come along ways. I’m not going anywhere, and no matter how far agencies like the NIH and CDC take the research, the goal is always to be as happy as possible, with whatever you got. The other goal of this blog is to promote awareness, and so maybe my little moment of anger can help do that in the long run. I think the best thing it did was inspire many of you to comment or email with your stories. Many people say it helps them to read this blog, and the truth is, it is just as helpful for me to hear from you. It’s easy to get so lost in your own story that you only see yourself in the world. The truth is no matter how poignantly real it can feel sometimes, we aren’t alone in this, and that’s maybe the most important thing to remember.

On Sunday morning I had started to bounce back from my week-long crash. I thought. Part of the “Shit Show” of last week was that on Monday, our kitchen flooded due to a leak in the wall. It was going to involve some major reconstruction (basically knocking out every wall in the kitchen) but they assured us it would only take a week. My sister thoughts were that we should move apartments. She’s all too familiar with how long a “week” takes in contractor time. But the idea of even packing my bags in a suitcase felt devastating to me, and luckily my brother-in-law was in no mood either to up and move overnight. So we decided to stay. But a few days later as I was walking through the hall, water seeped up through the carpet onto my feet. Never really a good sign. The workers came back and found the leak had begun to flood the master bed and bath and the front closet. By Friday morning, I was still pretty crashed and somehow there were 5 workers in the kitchen beginning demolition and making a shit ton of noise. The noise permeated my dreams but I stayed sleeping. If you can call it that. Keegan came in my room a few times asking if I wanted to go to his parents house to sleep, but the idea of getting in a car and going felt like too much. I said no, rolled over, and went back to exhaustive sleep. The demolition went on.

By the afternoon Keegan and his friend were moving the big stuff out to an apartment across the street. I packed in the laziest sick person way possible. I honestly didn’t have a lot of stuff, but what I did have I threw in two boxes Keegan gave me, and left all my clothes on hangers. Keegan and his friend moved my bed first and the couch so that I could literally go from my bed in the current apartment to my bed in next one. As they moved it on the first load, I laid on the floor in my empty room with Monty and fell asleep staring at the ceiling. I watched Keegan and his friend carry heavy things and sweat and noted how interesting faces look when you’re looking at them upside down. Here are some pictures of me during the move.

Day 1. 
Day 2.

As you can see I’m a big help. Anyway in two days, Amelie and Keegan had everything packed, moved and unpacked, and I laid there watching life walk back and forth carrying boxes over my head. It was a new perspective though and I’m always down for new perspectives. My favorite line from the whole moving experience came from my sister as she was unpacking in her new bathroom and I was laying on the couch counting ceiling popcorn. “Our fucking toilet is leaking!!!!!!” This was after three cabinets fell completely off of their hinges in the kitchen and the sink pipes leaked underneath when you turned the water on. When it leaks, it pours. If I could consume alcohol, I would have played a drinking game called “Drink Every Time Something Breaks” and had a gay old time. Instead I slept or played DJ for Amelie and Keegan while they packed and unpacked–which mostly consisted of me playing Carlae Rae Jenson’s “Call Me Maybe” on repeat. God that song is good.

By Sunday we still didn’t have cable which meant we WERE WITHOUT OUR SUNDAY FOOTBALL and my sister was WITHOUT THE RED ZONE ON ESPN which meant she COULDN”T TRACK HER FANTASY TEAMS ON A PLAY BY PLAY BASIS which was a problem, you can imagine. So we went to a bar with 4,000 TV’s and I felt sad as I watched the Saints lose in overtime and was the only Saints fan in the joint. I still yelled ‘Who Dat’ if ever so quietly. Unfortunately my body felt like it was slowly slipping away from me. An hour later when sitting upright felt near impossible and I felt a migraine coming on, I went home and fell straight asleep. Whatever momentum I had felt that morning was long gone and when I woke up a few hours later I had the migraine of the century, which lasted until yesterday. I didn’t fall asleep until 4 on Monday morning and when I woke up, I was more weak than I’d ever felt. I took Monty outside, but with this new apartment comes a flight of steps to get to ground level. I hate those steps, and I cursed every last one as I climbed them one by one, the way old people do. I threw the ball for Monty a few times, then apologized to him for being a human wasteland and came back inside. I set up camp on the couch and wondered what had happened to my limbs over night. It was like the cement fairy came over night and filled my whole body up. Thanks cement fairy!!

Yesterday morning I didn’t think I felt any worse until I tried to get out of bed. It was really hard to move. Nearly impossible to walk. I didn’t feel like I could make a fist. I wasn’t sad but I kept breaking down in tears, I think because I was scared. This felt different; worse than it’s felt before and I was nervous this time I might actually croak. Usually I just curse the illness, roll back over and go to sleep. Anyway, going to the ER is always a last-case scenario but after talking to Dr. Emils (one of my best friends in her last year of med school), my mom and my sister, we decided it was the best option. At least we could eliminate the possibility of eminent death since I had been getting worse over the week and the iv fluid and steroid would help with the weakness and get the migraine to go down. So Amelie left work early, helped me up the stairs and I cried as I said goodbye to Monty because I really didn’t want to leave him and I was also scared I’d get bad news at the hospital. It was the first time I found myself praying they wouldn’t find anything, because usually I’m looking for an answer. This time I just wanted the normal “We don’t know exactly what’s wrong, but here’s something for your discomfort.” Luckily, that’s what I got. As well as kind nurses and doctors and basically no wait time. A whole other world compared to the New Orleans hospital last January.

Hospital gowns, like mullets, are business in the front and party in the back. 

So, that brings us to the present. The good news is I’m not dying. I only feel like I’m dying. Haha. But, that I can handle. For some reason I woke up with swollen joints this morning, so it’s just another reason to take it slow. It’s also a creative challenge to see how many fun things I can do from the supine position. I don’t know what this crash is about, but it’s just going to take some waiting out. The best part through all of it is I realized just how much I didn’t want my sometimes shitty life to be over. I had been pretty down the last week being sick. I felt myself saying “Owell” as a speeding car raced past Monty and me on our walk and I entertained the thought of it taking me out. It was just my dark sense of humor of course, but now I say “No way JOSE!” to that car, and I live to see another day. Even if from the couch. Sorry for the length of this one. Like I said, it’s been a shit show of a week

 

Health, Happiness, Shit Shows.

 

 

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

Published on 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.

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.

One Thing, Once a Day.

Published on by Mary Gelpi9 Comments

I love getting late birthday presents in the mail. Wait, I love getting mail period. For one thing, I think the art of letter writing is becoming extinct, so it’s always pretty special to get something written in one of a kind hand-writing, written just for you. Dear Mary… Anyway, late birthday presents are like those blooper scenes they show during the credits of a movie you liked. Just when you thought it was over–bam! My brother Nick and his wife Estee sent me two new shirts and a skirt and a necklace with a hand-written card, the best! And my sister brought me shopping at Nordstrom. Her and Keegan have kind of adopted me as their 28-year-old child. Keegan even sent me to my room yesterday. I also unpacked my suitcase at their house two weeks ago, the first time I’ve really not lived out of my suitcase since February. All my siblings are like extra parents, each pitching in to help in their own ways and I am really thankful for that. It’s easy for me to forget that my situation could be a lot worse. They have all encouraged me to visit them, and that is a real gift. Anyway, I love shopping and I love new clothes, but it has turned into such a silly thing for me to love, mostly because I never wear normal clothes anymore. I never really go anywhere and I hardly see people besides Monty and my family. My uniform has evolved into leggings and t-shirts–every guys fantasy.

Last week and all weekend was a sick week. Like a sick day, but you know, times 7. I once wrote that I was the mayor of Migraine City, but I am upgrading myself this week to Governor because my head is super angry about something and apparently wants the world to know. Here’s your shot head, let it all out! Every day I keep telling myself I will get dressed in my new clothes and I will go somewhere and I’ll do my hair and makeup and look like someone who has her shit together. But, that has yet to happen. “Tomorrow” I tell myself. Then the song from Annie starts playing in my mind and I bet my bottom dollar that tomorrow there’ll be sun, and I will go out in it! Since I’m in Cali, there is always sun, but when you have a migraine, it feels like if you were to go outside under that bright sun you’d start melting like the witch from the Wizard of Oz. Anyway, the migraine cycle continues, but why am I talking about migraine cycles? I’m even boring myself.

When I’m in the throes of a sick week, I can start to get down. And also start to go stir crazy. So there are a few things I do and a few things I don’t do. Maybe most importantly, I do not watch TV during the day. There is just something undeniably sad about daytime television, and sunlight coming in through the blinds..maybe reflecting off the TV screen? Yuck. The only time I don’t find a sunlights’ reflection on a TV screen depressing is on the weekends when we’re watching football. Exceptions to every rule.

First, I keep a book on hand and I read. I swear it’s like I’ve discovered the joy of reading only last year..at age 27. Pretty ridiculous since I discovered the joy of writing at around age 9. I feel like I’m catching up on all the years that I began books and never finished them. I always associated reading a book with homework, something I had to do. It never felt like I had a choice in the matter. As soon as book reports became part of my schooling in 6th grade, it became my goal to see how little of the book I could read and how high a grade on the report I could get. Unfortunately, I work really well under pressure–so the night before it was due I’d skim through the book, find the important parts, and write a flowery report. I almost always received A’s on them. I was actually proud of myself for being able to complete the work this way! What an idiot. Anyway, now that I have really experienced what getting lost in a book is like, I feel like I have years of catching up to do. So that’s partly what I’m doing. Especially because it’s not sad at all to read while sunlight is coming through the window. In fact it’s the most fun to go outside and read. Monty and I had been going to the park daily, but I crashed mid-week and we haven’t been back yet. Anyway, right now I’m reading Wild by Cheryl Strayed. A true story about a woman who lost her way and decided to hike the Pacific Crest Trail by herself, with no experience. Truthfully, it’s a little difficult to read because she is in a lot of physical and emotional pain so far, and I like reading to carry me away from real life, so in that light it’s not been as fun to read as Gone Girl but I’m just about 1/3 in, so I’ll see how the next 50 pages go.

The second thing I do is create something. It can be anything from a four line poem to a line drawing. The goal is not to create a masterpiece work of art. The goal is to let your soul do some talking. Sometimes what you make will be crappy and sometimes you’ll surprise yourself. But the thing is, now no matter how sick or worthless I felt today or the fact that I never got dressed in real clothes, at least when someone asks me what I did today I can say “I wrote a poem,” or “I drew a picture of a stupid cat.” So now today was not a complete waste. Here are some simple rhyming poems.

*I am tired
But do not sleep
I am sad
But do not weep
I close my eyes
And count to 10
If I still feel it
I’ll do it again
Until the clouds part
And the dark clears
I’ll think of my loves
And not of my fears.

*In the corners of my mind
In the absence of a dime
I think about home
In a house that isn’t mine.

*At night I roam
through consciousness alone
Would I have chosen this
If I would have known!

*At least at the end of day
Where I never got dressed
I can say I wrote a poem
And that’s something I guess.

Normally I hate rhyming poems, and I don’t necessarily love these. But, they’re what came out. So I let them. Because that’s what my soul had to say today, and it doesn’t really matter whether it’s good or bad. It’s the fear of making something good or bad that is dangerous. Once I let that fear go, I kind of free myself. The worst that can happen is you write a shitty poem or you draw a shitty picture. Certainly there are worse things! Either way, you’ve got something to look back on or laugh at or talk about, and you weren’t completely at the mercy of illness.

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I drew the above drawing a few days ago. It turned out to be one of my favorites…drawn on a sick day where I never got dressed. It started with a very simple shape; a leaf. Then I repeated the pattern and this is what turned up. I had no idea what I was sitting down to draw that day, but it’s another example of letting your soul speak. Or stillness speak. I just know that when I designate time to letting things come through me, I am usually surprised. I end up creating something I never could have thought of myself. It’s strange, the way sometimes your dreams can be insanely more creative or smarter than you are in real life. I guess it’s the subconscious at work. This one is titled “I Don’t Normally Look Like This” and is for sale for $10.

Anyway, that’s been the last 7 days. Fingers crossed that tomorrow is migraine free and filled with more energy and I get to wear some happy clothes and run errands like humans do. If not, well then…it’s back to the drawing board.

Health, Happiness, One Thing a Day.

Sometimes You Gotta Say Yes.

Published on by Mary Gelpi12 Comments
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Even when you don’t feel like it. Even when it hurts. When it would be not just easier or more convenient to say no, but less painful, less exhausting, perhaps even, the healthier option– even then, sometimes, you gotta say yes.

As my role as the “sick girl” has slowly developed over the past few years, I’ve noticed how often and how easily I’ve begun to say no to things. And that’s mostly for the sake of my livelihood. I don’t have the endurance to do the things I once did, nor do I have the resilience to bounce back if I overstep the boundary. There’s an invisible line with illnesses like this; one that not even the sick person can see, and it doesn’t make a sound when you overstep. Not until later, when it’s too late to take anything back. So, you pay for it. And you start to feel your way through it, constantly guessing whether you’ve gone too far or done too much. It’s about as easy as pin the tail on the donkey in the dark, with booze. But this solid body of mine, as broken as it is, it always lets me know if I’ve infringed on that boundary. Always.

The last few days have been crappy. Not Colorado crash crappy, but, crappy. There have been a few 26 and 27 pills a day, days. Which I’m learning how to be OK with. Even sick days, where the most you do is brush your teeth, are OK too. They have to be. It’s interesting what this illness turns you into; a spectator where you once a participant. I often feel the quick pace of the world spinning and everyone rushing by with their busy lives, and then there’s me…just kind of, standing lying there. I miss being busy. There’s something comfortable about always having something to do, someone to see; there’s an importance about it. I notice now how different my to-do lists are verses my to-do lists a few years ago. 1. Wash clothes. 2. Pick up prescriptions. 3. Buy new notebook!

I’ve begun examining my life a little closer lately, and am putting a lot of thought into how I spend my time. It’s really crazy to think that I can sort of do what I want given that I don’t have a full-time job or any REAL responsibility besides my health and my dog Monty. (Although I don’t know, one might call my constant correspondence with the Walgreens pharmacy a full-time job in and of itself. For real though.) The thing is, since I can’t hold a full-time job right now, I don’t have any income. So that’s the first damper on “Doing what I want.” The second damper is, duh, I’m incapacitated most of the time. If I had my way, I’d be going, and doing, and meeting, luncheoning, and painting and creating and…you get it. Saying YES a lot. I’d be one of those busy people with alphabetized spice racks and really organized DVD collections. And I’d run half marathons for fun! BLECH. Scuse me, I just puked thinking about running a half marathon. Anyway, that’s not my life. Most of the time I feel too exhausted for showers and everything I buy at this point is on someone else’s dime…so it’s really teaching me a lesson in humility, appreciation, and grace. Every night I pray that I will be able to pay back everyone who has been so gracious in taking care of me. And I solemnly believe that day will come. One day.

In the meantime, I have a lot of something that many people don’t: free time. And whether I’m sick or not, it’s up to me how I spend my time. I find myself feeling bad a lot about not having a full-time job and not being able to support myself. I was used to having  a job and independence define me. But, I think that’s pride and the ego getting the best of me and I constantly have to remind myself that if I could, I would. But right now, it’s not where I am. So how about instead of feeling shitty on top of feeling shitty, I try to make better use of my time. I decided I’m going to read as much as I can, write as much as I can, and start looking at this free time as a gift instead of something that “happened to me.” A lot of people would love time off from work, to be a spectator, to read for the sake of reading. To be honest, not having something to do is harder than you’d think. We’re kind of a culture that tends to define ourselves by our work. I guess I’m redefining both my purpose and the definition of that word. Is it still considered work if you’re not getting paid?

This week has been rough health wise, but today I was sick and tired of being sick and tired more than I was actually sick and tired. SO, I said, screw it. I took a bath, got dressed, and went to the park with Monty. Not because I felt like it, not because it felt good even, but because I needed to get out. Sometimes I do the things I would do if I weren’t sick, just for a little while. I can go outside. I can throw a ball for Monty and finish reading my book. I felt shitty the whole time, but mentally I needed it. Chances are, I’ll pay for it tomorrow. But it’s one of those weeks where I felt like I would be paying for something tomorrow whether or not I did anything today, so I went for it. Every once in a while, it’s nice to feel like things are on my terms. It’s my way of giving the illness the middle finger. And you know what? It felt good! Screw you sickness. Today, Mary Gelpi SAID YES.

So confident.

OK so maybe I am really over-glorifying my little trip to the park. But, I have to keep myself in check. It would be really easy for me to say no to anything that required leaving the house or socializing with people. I can feel the crotchety 80-year-old inside of me getting way too comfortable. I remind myself that I am 28. I need to stop being so opposed to meeting new people. (Dude, I hate meeting people. Also, I’m terrible at it.) I have to be OK with going places sometimes, because I think our souls like a change of scenery. I need to not automatically say no, even though my experience gives me that tendency. Sometimes I will pay for it, yes. But there’s a price to be paid for constantly saying no, too. So I’ve got to find the middle. I’m still young, and I need to start acting my age. Before I know it I’ll be drinking Ensure and wearing Oopse I Crapped My Pants. And then meeting people will be REALLY hard!

You know what else I did today? Bought a new notebook. That’s my favorite thing to buy. I’m very particular when it comes to notebooks. It takes me a while to pick one out and I sit there in front of the shelf of books running my fingers over pages, opening and closing it, taking measurements and looking like a crazy all the while, but I like to take my time. I can’t have things like paper texture or wide rule lines interfering with my writing. Anyway, I found a good one after going back and forth between two for 10 minutes. This is typically what I do when I buy anything. I’m very indecisive. So I’ll buy one, and then go home and think about the other. It’s terrible. Anyway, I’m trying to work on that. So I’m going to do some writing. And then some reading. And then I’ll do it again tomorrow I guess, in a park, and throw the stick for Monty. Because that’s what my life is right now, and it won’t always be that way. Maybe it’s not about  being important. Maybe it’s just about being.

Health, Happiness, Yes.

*To all my family and homies in New Orleans, my thoughts are with yall. Although I’m pretty sure most of you are drunk and having an OK time. Stay safe.