Category: Pain

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.

When I Thought About Adulthood, This Is Not What I Expected

Published on by Mary Gelpi26 Comments

In two days I turn 28 years old.

I’m thinking about that number 28. I’m thinking about the word “adulthood” and whether or not I’ve reached it. The number sounds like it belongs in that category, but my life doesn’t really feel that way. I don’t recall exactly what I thought life would be like at 28, but I know for sure, this is not what I expected. I always thought I’d be married with kids by now. (HAHAHA.) I expected adulthood to be so organized and grown-up and filled with smart people who had the answers and knew exactly what they were doing. But I see now, adults are often lost and they don’t have it all figured out yet either. They still get shit-faced and throw up sometimes. There are still social hierarchies and corresponding dramas. They still make mistakes and are learning their way through it. My mom still encourages me to eat vegetables. And I still fantasize about my wedding day and love Disney movies. There are a lot of things that I thought would be different, that aren’t. And there are a lot of things I didn’t expect to still be doing, that I am…

I didn’t still think I’d be…

*Eating at the kids table at Thanksgiving and other family events. I am wondering at what age I will graduate to the adult table. I’m going to celebrate so hard on that day.

*Sitting on a bathroom counter in my pajamas popping zits in the mirror, or what I think could be a possible zit one day and subsequently wrecking my face.

*Calling my mom with questions when I catch a cold…(which is now just me walking into her room, you know, cause I live with my parents now…)

“Wait do I need a decongestant or an expectorant?”

*…Living with my parents.

*Taking bubble baths. Still prefer them to showers…any day.

*Borrowing all my sisters clothes.

*Still getting excited as hell when Christmas comes around.

Yes.

*Turning off my bedroom light,  running lightning fast and jumping into bed so the man underneath it can’t cut my feet.

*Getting questioned about my outfits by my mom. “You’re sure you want to wear that to dinner?”

*Talking to girls about boys and boys about girls. It’s been the same conversation since high school: girls are kind of crazy, boys are kind of dumb.

*Watching The Little Mermaid and singing “Part of Your World” really loudly. Every time.

Part of your WORRLLD!

*Giggle when any of my friends say the word penis or talk about one. It’s shameful. I know.

*Be thoroughly entertained by bubbles. (Especially if Monty is around)

Did someone say bubbles?

*Having my grandma play with my hair.

*Wondering the meaning of my life. Thought I’d have it figured it out by now..

…None of these things did I expect to be still be partaking in and/or enjoying at 28. When I was in middle school, I remember telling a friend that I wanted to be married by age 22 and having my first child at 24…basically because it just sounded good. I was 12, and stupid. But truthfully, it was an arbitrary goal anyway.  When I was young, I thought that was the meaning of life: To grow up, find a husband, and have babies. And maybe it is. Those are still things I want. I hope to marry a best friend and not blow it and I’ve always dreamed of becoming a mother. But now I see there is more to life than that. I think. I actually have no idea. I just know that right now, in this moment, it’s not my time to be a wife and mother. It’s a time for me to get healthy and stronger, to find some certainty, get to know myself a little better, trust myself a little more, and become who I am meant to be. Joseph Campbell says that “The privilege of a lifetime is being who you are” and I think so many things in the last year really threw my identity around and left me slowly piecing it back together, which I will continue to do. I trust that the things I want will happen in time, but I am careful not to put aside happiness while I get where I’m going. I am right here, so right here is where I should be happy. I have high hopes for 28. I never expected that at this juncture of my life I would be where I am, and in truth, this is not what I would have chosen. But the fact that I didn’t choose this, I didn’t seek it out–makes me trust it more. I was headed in a completely opposite direction, and yet here I am. It tells me something else was at work.  I am done questioning it. I am done being mad at it. I’m ready for the next chapter. Bring it on, 28!

Health, Happiness, Twenty Eight.

The Killers Relief

Published on by Mary Gelpi6 Comments

When I wake up
Everything is just how I left it
In between tossing and sheets
sweating and dream world,
the killers wore off
And it’s as though nothing has changed
I still feel everything.

Because the hour is inappropriate
To start a day now,
I re-dose and wait
And this is admittedly exciting for me
That’s what they call
The thrill of relief.
When the killers go to work
I will struggle but win eventually
I’ll go back to dreaming
Where everything is the same.

I heard once
That you don’t feel pain in your dreams
Which makes me wonder
Where I’ve been going every night.

Last night I dreamt of money
And big powerful bankers.
I counted my money repeatedly
And my fingers throbbed
Until I dropped it all
watched it scatter
When I awoke I couldn’t recall the amount
Something had changed
But my fingers ached the same.

When I awake a final time
It will be inappropriately late
To start a day
Everything that once was numbed
Will have seeped back in,
alive and noisy.
The jury is out
On the purpose of pain
But each night it comes
Then the killers kill it
And I return to dream world
Until it comes again.
When I awake,
Everything the same.

Help and Thank You

Published on by Mary Gelpi21 Comments

It’s been almost 7 days and 12 hours that I’ve gone without internet and I am gently reminded just how much a product of the multi-tasking, turned-on tech generation I am. I think going this long without wi-fi is my generations equivalent to camping. I’m pretty sure they call this roughing it. And I’m pretty sure my parents would call me a pansy.

This is an easy problem to fix, as most public restaurants and coffee shops have free wi-fi these days but since I’ve basically spent the last seven days IN BED or using some other piece of furniture as though it is one, I haven’t been able to take my little coffee shop trips like I’d planned.

I’m not exactly sure what’s going on, but since the day after I arrived here, I’ve been crashing about an hour after I wake up. Apparently my adrenal glands aren’t functioning properly and I’m bottoming out after I wake up. And not just “Gee I’m sleepy I think I’ll lay down for a bit” kind of crash. (Since becoming sick I have no idea how a power nap works. I just know 15 minutes could never ever ever ever be enough when I’m in a crash.) It’s more like hitting a brick wall where the only thing to do is go back to bed. If that sounds depressing, well, yeah, it is a bit. But there is no such thing as faking it. I made it to dinner at my cousins Shawns house after three days in bed but didn’t feel like I could keep my head up to play cards after dinner. And we ALWAYS play cards after dinner. That’s what you do in Colorado. That’s what you do when grandma is around. And that was just one of many things I’ve had to miss out on since arriving, which is very challenging emotionally for me. I’m the youngest of four, so basically since birth it’s been my prerogative to just not miss out on anything. But that affect right there is one of the hardest parts of this illness, many times even harder than the physical pain itself.

A few nights ago after spending the last two days straight in bed, I felt like I started to lose my mental strength. My siblings had left to go visit with old family friends who I’d really like to have seen but I just couldn’t make it happen. When I’m sick like that I’ve always felt it’s best to be alone since I’m not a ton of fun to be around and basic “sounds” really bother me. But then after everyone left, I got sad and wanted them to come back again. All of my siblings are here and we have taken over my grandmas little house. My brother has been sleeping on an air mattress in the middle of the living room–and this has really worked out for me, because I basically get to be in bed while simultaneously hearing to the conversations and sounds and chaos that ensues when more than one Gelpi is in a room together.

The truth is, I find myself looking for an answer to all of this and there often isn’t one. There are a lot of questions I have about my life that most of the time I am able to let go unanswered. But during those times like a few nights ago, I can’t escape the questions so easily, and I feel anger about them because it simply doesn’t make sense to me. I was angry that most of my vacation has been spent lying down. Angry that I was missing out on my favorite activities. Jealous of other people’s health. Angry that I rarely get to see all my siblings at the same time, and now here we are all together but I can barely get out of bed. Marc Nepo says it’s our job to make sense out of our pain. So that is what I tried to do the other night as I did the only thing I promised I would do that day–take a bath. Big day for Mary!

During dark times like that, I don’t often have big revelations or hear the voice of God. I just let myself feel the pain and then remind myself that tomorrow is another day and say some prayers. There are two prayers I say when I’m all out of juice and all together they make up three words. And here they are: “Help” and “Thank You.” When I’m too tired to spell it out for the universe, (and let’s get real, I shouldn’t have to spell it out for the universe) those are the prayers I say, and honestly it feels like enough. The help prayer is for strength and the thank you prayer is for my family, particularly my siblings. They have taken phenomenal care of me since arriving, and my sister Amelie has been force feeding me protein every two hours. Even when I’m cranky and don’t feel like moving, talking, or eating. They bring me home leftovers and pick up my prescriptions and lie to me when I ask them if the party I missed out on was any fun. Each of them is an invaluable gift to me. Sometimes I think about my life and think maybe I’ll never get married. Maybe I won’t find “The One” or my soul mate or whatever they talk about on Sex and the City. And then I watch us at work together and it hits me that maybe I don’t need that. Sometimes my mom and siblings feel like all the soul mates I could need. (Monty too of course) That being said, I’m sure they’re all hoping that one day I’ll be able to sustain myself and won’t require an air mattress in the middle of their respective living room floors and I am hoping for that day too. But there is just a lot of love between us and often I feel like my glass is overflowing with the stuff that matters. And pain and exhaustion aside, that feels pretty good. At the end of the day, you ask yourself; do I have what I need? And I do. I have modern medicine and the smell of my grandmas house, 10 more minutes of free wi-fi and unconditional love and the answer is clear. Today was hard, but I had enough.

Health, Happiness, Enough.

Greetings From Bed on Hard Knocks Island

Published on by Mary Gelpi20 Comments

I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.

Not Too Shabby a View

I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.

Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!

The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)

On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone it so many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.

Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.

In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.

Health, Happiness, Crash and Burns

Hard Knocks Island

Published on by Mary Gelpi13 Comments

If you’re like me, you’ve never heard of a place called Fisher Island. That was true until last January, when my mom found a CFIDS specialist with a clinic in Miami, and my brother happened to be engaged to someone who was from there. Without ever having met my mom or me, the soon-to-be in-laws invited us to stay with them when we came to the clinic for the first time. We would soon learn that they didn’t live in Miami exactly, they lived on Fisher Island; a private, man-made island only accessible by ferry or boat once your name has been added to a list and cleared by the guard. It’s like an exclusive night club but bigger and islandier and your money’s no good here. You buy everything through an account number. Your cash might as well be monopoly money.

It’s a real testament to my brother’s future in-laws that we were welcomed with such open arms. We could have been a bunch of crazies for all they knew. Hadn’t they met my brother? It was pretty immediately a Mi Casa Su Casa situation, accept it was more like My Island Your Island. It is exquisitely clean, beautiful and pristine here. There are pools galore though I never see anybody swimming in them. There is a private beach with a restaurant a few feet away. Theoretically you could effectively choose your own sushi menu right out of the ocean. That tuna there! I want that one! It’s something like Disney World meets the South of France. I’ve never seen or experienced anything like it. Whatever it is, of all the places to be sick, this one ranks in my top 3.

Before my first trip out here in 2011, I had spent most of the month of January in a horizontal position at my mom’s house. I was horribly depressed. I was watching everything familiar to me, all the things I defined myself by, slip slowly away with my health. It wasn’t easy watching or letting any of those things go. But I remember feeling the tiniest bit hopeful when my brother Nick called me the night before I was due to depart. “Dude are you ready for Miami?!” Sometimes even hearing the energy in someone elses voice could exhaust me in its own way. I groaned and said something about needing to pack but not having the energy to do the laundry. I remember he was so cheerful and said “All you need is a bathing suit. There’s a lot of sitting around and doing nothing on Fisher Island.”  I closed my eyes and let those words hang in the air. “Sounds perfect.”

As promised, we were welcomed with enthusiasm as soon as the ferry docked. I remember entering their home and feeling like Little Orphan Annie entering Daddy Warbucks house–which is funny because Estee’s dad slightly resembles Daddy Warbucks.  Every room was beautiful and had what I consider to be the most important detail in any room; large and bright windows–most with a view of the ocean. I suddenly felt really lucky to exist, and that glimmer of hope I had on the phone with Nick came back as I hugged the new members of our family and they insisted we eat dinner even though it was past 10. I remember my doctor’s appointment wasn’t until two days after we arrived, and thank God it wasn’t because most of the next day was spent in bed with a killer migraine and that ever so seductive hit-by-a-truck feeling. The only difference was, this time I woke up in a beautiful room with a breathtaking view. And to some extent, that did make a difference. It at least softened the blow of it all. I remember taking migraine medicine and going back to sleep. And when I did, something happened something that continues to happen. I fell asleep but could hear real life happening outside the door. I would try to yell or move to wake up but felt paralyzed and voiceless. This happens to me often when I take naps and I don’t know if it’s a part of the illness or something separate entirely, but it is unsettling. I finally escaped dream world to find that Nick and Estee brought lunch into my room on a tray and sat with me while I ate. Looking back on that time now, I can’t believe what a fog it was and how bad I felt. I remember Nick trying to convince me to read the book “Freedom” by Jonathan Franzen but any time I would try to begin reading, the words would fall out of chronological order and I’d have to keep re-reading them, or I’d start to feel car sick and put it down after just a few sentences. (Luckily that symptom has mostly passed and 2012 has been filled with books!) I went to bed that night wondering what Dr. Klimas would be like. I prayed hard for two things. I prayed that we would get answers, (real answers) and I prayed that I wouldn’t find out I was crazy. By that time, I really started to question my sanity. If enough people look at you sceptically, express disbelief, or tell you you’re experiencing something psychosomatic and not actual illness, you’re going to start to question yourself, no matter how bad you feel.

To make a long story short, my prayers seemed to have been heard. For one thing, only after Dr. Klimas ran extensive tests and blood work (my initial visit at the clinic lasted seven hours) did we finally get some answers that made sense. Finally, it was explained why I always felt like I was about to faint any time I stood up or any time I had to stay standing. I had Postural Orthostatic Hypotension due to low blood volume. This diagnosis was made in under 30 minutes using a tilt-table test. (You can request this from your doctor.) The best part is, it’s totally fixable. There’s a word we love. I take atenolol in the morning and try to consume 12 ounces of fluid containing electrolytes. Atenolol prevents your heart from jumping up to 140 bpm when standing upright and controls the severe fluctuation of blood pressure. This is what I mean about answers. When these symptoms were told to one of my other doctors he told me to drink more water. She also explained how the chronic migraines are typically a result of brain inflammation (a primary condition of CFS) and how dehydration is one of the biggest triggers for migraines. (And also that prescription migraine medicine tends to dehydrate you) So especially on travel days, you should double your liquids. And you can’t just drink water. You need electrolytes. Probably the biggest diagnosis that came from that first round of tests was news that I had Lyme Disease and we would start aggressive antibiotics to get it under control. But beyond the interview, the tests, the drawing of blood, the explanations in scientific and layman’s terms, stands out one particular moment between Dr. Klimas and me. She had just finished drawing blood when I admitted to her that I had been really worried that I was going to come to the clinic and be told that I was crazy. Then we both kind of laughed and she told me that in all her time working with this illness, there has been one patient who was certifiably crazy, and that was an extreme case. “People who come here aren’t crazy, they mostly just want their lives back.” I exhaled. Finally. Validation. I had never wanted to hug a doctor so much in my life.

I’m going back to Dr. Klimas on Friday, and in the meantime am enjoying Fisher Island with family and as always, working on staying present. You know what helps me stay present? Views like this:

And golf carts like this…

And this…

And babies that pose like this…

And smile like this…

All of those things help, at least a little. I’ll report on the doctors visit next. Until then…

Health, Happiness, and Cadillac Golf Carts.

Go Ahead, Cry It Out.

Published on by Mary Gelpi23 Comments
There there…

You know, you’d think as someone who takes 25 pills a day, I would have a pill for everything. And when it comes to aches and pains, muscle spasms, migraines, restless legs, or insomnia..it’s true. I’ve got a pill for most things. I carry around my pharmacy in a medium-sized black bag with birds on it. It’s like my second purse, but probably more important. But in the depths of that entire bag, among all the bottles of pills of every color and every shape, there is no pill for crying. Sometime’s life is really hard, and you just have to feel it. In two words; it sucks. It’s tiring and seemingly unrelenting and comes and goes in waves but just like everything else, it won’t last. It isn’t forever. And sometimes that’s the only thing to get you past the moment.

Sorry about being all depressing, but I’m going through some hardships right now and I told myself I’d write good, bad or ugly, so here’s sticking to goals. I won’t get into all the details but I am going through a breakup, thus the random waves of crying that come on like sudden nausea. It’s awful! It’s also funny, because truthfully, I was never much of a crier. If I felt the urge to cry I held it back, and I especially didn’t like to do it in front of people. I didn’t cry at my dads funeral. Maybe it’s because I was 12 or maybe it’s because seriously, his funeral was somehow a joyous occasion and I don’t really know how to explain that except that we sang happy music and felt proud that his life filled up an entire church. It wasn’t until my step-dad died, unexpectedly in the middle of college, that I turned into a crier. There was no holding it back anymore. It was tragic and it happened fast and left the family a little lost, especially my mom. It’s funny because my mom was never much of a crier either, but after Roger died, the same thing happened to her too. Sometimes we’d sit in the office, trying to tackle another post-death obstacle like canceling Roger’s phone (which somehow took FOUR MONTHS) and we’d sit there just sniffling and wiping tears away. Truthfully, there wasn’t always something wise to say. A quote about God’s plan or everything happening for a reason really falls short when you’re in the very raw place of grief. Sometimes all there is to do is cry or be a shoulder to cry on and remember that it won’t last. But what I’m trying to get at is this; it’s OK to cry.

I don’t know how our society or culture became this way, but it feels like somehow we view crying as a weakness. And when someone begins to cry our first impulse is to try to get them to stop. “Don’t cry,” we’ll say. Or “It’s OK” or some other vague comment that is usually untrue. The problem is crying makes other people uncomfortable–we’re a people of solutions, and crying means that someone is in pain or hurting some way, and we want them to stop. That’s the nice thing about dogs, they let you cry and cry and they don’t judge you for it. The thing is though, crying is not only natural, it’s good for you. It’s acknowledgment and acceptance that yes, this moment or time is rough. It’s challenging or painful. And the truth is, you just have to feel it. You have to exist in the grit of it. It hurts. But it also means you’re awake. I thought after 2011 that I would literally run out of tears. There was one day that I cried on and off most of the day and finally by 9 I thought wow, I think I’m all cried out! Then a commercial about abandoned dogs in New Orleans came on and I burst into tears. Nope, wasn’t all out after all!

My point is, that instead of telling someone to stop crying or to be strong or to move on, we should try the opposite. We should encourage them to cry. Tell them to go ahead and sob it out. Hold their hand or offer your shoulder or pass the whole stupid box of kleenex if that’s what it’s going to take. But don’t try to stop the process. Sometimes life is sad, and it’s OK to acknowledge that and it’s OK to cry about it. Babies do it. Women do it. Men do it. Even elephants do it. Just like laughter is an expression of something funny or entertaining, crying is an expression of sadness or loss, it is honest, and to repress it is only going to make it hurt more later. Simply put–let it out. Shakespeare said “To weep is to make less the depth of grief.” That being said…Waahhhhhhhh.

Kidding. I’m not crying right now. I’m watching the Golden Girls with Monty and accepting that this is a tough time but I’m going to survive. If I could recommend a new class for college it would be called Breaking Up 101. I have thought this for a long time, because breaking up is one of the hardest experiences and worst pains you can feel, even if it is the right thing to do. But we’re conditioned to think that if you feel this bad, then something’s not right–you shouldn’t do it. So then it follows, if you’re miserable from a breakup, then maybe you made the wrong decision? The truth is, there is never a good time to break up, it hurts like hell whenever it happens, and it’s going to screw with your life for a while. Aka…you might burst into tears while watching Say Yes to the Dress or you might suffer an identity crisis and start wearing brightly colored wigs like Kim Kardashian did. But that’s kind of how it goes. It’s tough, but it won’t last.

Anyway, that’s what’s going on in my life…how are you? Haha. I hope this doesn’t sound too tragic. Everything and everyone will be OK. I am assured. Mostly. But I still get waves of tears and random things that set them off, like an old photo from college or coming across my old business card from when I used to have a real job and my life was more..clear. Sometimes I feel like I’m floating on a raft in the middle of the ocean and am just drifting in no particular direction at all. It’s living in the “grey” of things. But it’s OK. I’m going to cry and then I’m going to stop and then I’m going to pick up the pieces and keep going. Because that’s the thing about life..it goes on.

Health, Happiness, and BOO HOO!

*Photo Credit: Jill Greenberg

Happy Stuff: Making a Bad Day Better.

Published on by Mary Gelpi26 Comments

Yesterday was a tough day. It was one of those days that you sit in a room by yourself in silence and then out of nowhere this question makes itself known; Who am I and what am I doing?

This isn’t such a rare thought for me to sit on, but spend too much time sitting on it and you’ll be no one and do nothing. The question arose in me because this week has been rough for me health-wise. And when it’s your fourth day in pajamas- no matter how awesome your pajama pants are- it makes you consider your existence in that essential kind of way. I’m like, dude, why am I here? And feeling like a human wasteland is just not a good feeling. But also, it’s more a thought derived from our egos and it is mostly untrue. In a clearer head I know that my existence matters and everyone who is alive matters. That is true. One of the shitty goals of the ego is to make you feel separate– from earth, from society, and from God. The truth is that we’re connected to all of these things and that our existence matters.

So there I was feeling all down on myself and I’m like you know what? This is crap. I’m not going to sit here and feel sorry for myself. I’m going to do something happy. And strangely I felt this weird desire to run. Strange because mostly I hate running. But if I had energy, I would have put on those professional looking running clothes that my sister and brother wear when they go jogging and feel the wind in my face. But the truth is, I’d probably tire myself out getting dressed before even getting out the door. Plus it’s so hilly here, I’d probably vomit after the first hill. My fatigue level has been rough this week, which I think contributes to those existential crisis moments of Who Am I and What Am I Doing and Am I Going to Live on my Siblings Couches Forever? But you have to cut life into slices. Sometimes you take it by the week. Sometimes by the day. And yesterday, by the hour.

Sometimes you have to reach out for help, so I texted Gabe “Life is hard!” and he texted back, “Yeah, it is!” And I remembered, oh yeah, everyone’s life is hard. Haha. Then I was like, OK, I need to bring some happy energy into this room. And the quickest way I know how to do that is through music. So I started looking for energetic happy music to start. I was g-chatting with my friend Emily and I was like ‘Dude, I need some good music. Happy stuff. What movie has a great soundtrack?” And Emily responded “Beauty and the Beast.” Which made me 1. Laugh out loud. 2. Play that song “There must be more than this provincial life! and 3. Remember why I love Emily so much. So then I was like OK, more music. And I kept listening to different things and put together a playlist of upbeat stuff. And I don’t know how, but somehow Tom Jones “It’s Not Unusual” made its way onto the playlist, and if you can imagine a scrawny girl in her pajamas blaring the one and only Tom Jones and dancing like an idiot to that weirdly catchy tune, well then, maybe I’ve made you smile. Because soon I was laughing at myself and what a hilariously tragic day it was.

Next, I took out my favorite sharpie pen and decided to do arts and crafts, because it’s fun and, well that’s the only reason. The thing is, I’m pretty terrible at drawing and painting. But, I enjoy the process of creating. And in the last two years there is one thing I discovered I’m decent at; drawing straight lines. So I have all these pictures at my mom’s house, a few in frames and a few in a folder, of white paper with black vertical lines. Mostly because it’s all I can do and also it requires focus and patience and time, not unlike actual good artwork. And there’s something fulfilling about it. The more lines you draw, the more disorienting it becomes on the page as you continue. Like the lines in your peripheral vision become blurry and then start to move on their own. It’s weird. And fun. I show you.

First You Draw a Couple Lines
Then You Draw a Couple More
Then You Draw Them Till You Feel It’s Done

And that is the art of drawing straight lines. If you’re thinking ‘What is this hippie shit?” I hear that. It’s mostly meaningless. But I like how long it takes. And that it’s simple and looks that way but also requires patience and focus and something about it makes me usually feel a little better. SO LAY OFF ME AND MY LINES OKAY?! Jokes. This one is for sale for 1 dollar and is titled “Welcome to America.”

After that, I received an email from a stranger who told me she reads my blog and that it makes her laugh and she felt the need to reach out and tell me that. I was like dude, the Universe works quickly! I was doubting myself and then this stranger writes me and tells me to keep it up? Cray cray. Thank you for that email Annie wherever you are. Whatever convinced you to write me, pay attention to it, because that just happened to be something I needed to hear at the time that you sent it. Yay for serendipitous universal connections!

And then after that, I came across a video of a rather large dog riding a bicycle and I was like, holy cow, dogs are incredible. And if this doesn’t make you smile you may want to check yourself because there is a very real possibility that you are a robot. Not that there’s anything wrong with that, it’s just good information to know about yourself. Just watch.

A Dog Riding a Bicycle

And if that didn’t do it for you, then maybe you’ll appreciate this dog that dances better than you.

And if THAT didn’t make you smile, maybe this picture of a really cute baby I know will.

Dude, just look at her feet.

Something about this photo just makes me happy every time I look at it and I’m pretty sure it’s her feet. But who can say. Anyway, after the drawing, and Tom Jonesing, and dog cycling and baby photos, I felt a little better. Then I thought of the many ways this day could have unfolded; it’s very easy to fall into a sad day and stay that way. It has happened to me countless times. But I am realizing just how big our role is in the outcome of our days. I had a friend in high school say to me once: “Do you the know the difference between a good day and a bad day? ATTITUDE!” And I remember wanting to punch something when I heard that, but also, it’s kind of true isn’t it? Perception plays a huge role in our lives. If we look at life as against us, we’ll find opposition. If we look at life as for us, we’ll find peace. There will be good and bad days for the rest of our lives. There will be reasons to laugh and reasons to cry. But when given the choice on mediocre days, and we do have a choice, choose the laughter. It’s more fun that way. And most importantly, pay attention! The universe gives us signs and symbols all the time. It is up to us to piece it all together.

Health, Happiness, and More Happiness.

Chronic Fatigue Syndrome; The Game!

Published on by Mary Gelpi24 Comments

When someone asks me what Chronic Fatigue Syndrome (or Fibro) is, I never really know how to put it. I usually want to ask “How much time do you have?” I remember once while being crashed on our couch at home, my mom read off a list of CFS symptoms and 5 minutes went by and she was still reading them off. It was almost laughable. I ran out of fingers and toes marking the ones I had. Since I’ve got the time, I’m going to put the long list here. You can make a game out of it; every time you come across a symptom that you have, take a pill! See? Being sick can be fun. I’m going to keep this list in my back pocket, then it will be accessible whenever I need help explaining the effects of the condition. Feel free to do the same. Ready? Go.

Pain●generalized muscle pain ●new onset headaches ●aching, burning shooting pains anywhere in the body  ●arthragia without joint swelling ● frequent and intense pain in upper spine and neck area ●abdominal pain. Post-Exertional Malaise and Fatigue●Flu-like or hangover feeling following minimal physical or mental exertion, sometimes immediate, sometimes delayed several hours or a day or more and associated with immune activation, with sore throat, tender lymph glands, general malaise, increased pain and cognitive symptoms ●Feeling worse after exercise, rather than better ●Taking a prolonged time to return to pre-exertional function level ●Lack of endurance. Autonomic Manifestations Orthostatic Intolerance:●Neurally mediated hypotension (NMH) i.e. problems with regulation of blood pressure and pulse, especially when standing still; with symptoms of dizziness, light-headedness, slow response to verbal stimuli; an urgency to lie down ●Postural orthostatic tachycardia syndrome (POTS) i.e. Excessive heart rate during 10 minutes of standing still; blood pressure drop upon standing; light-headedness, dizziness, nausea, fatigue, irregular breathing, visual changes sweating, headaches. ●Delayed postural hypotension i.e. blood pressure drop after many minutes of standing, rather than upon standing ●tilt table test abnormalities Other autonomic manifestations: ●Palpitations with or without cardiac arrhythmias ●24-hour Holter monitor results with oscillating T- wave inversions and/or flat T-wave ●breathing dysregulation ●shortness of breath ●intestinal irregularities ●irritable bowel syndrome ●diarrhea ●constipation ●alternating diarrhea and constipation ●abdominal cramps ●bloating ●nausea ●anorexia ●urinary frequency ●painful urination ●excessive urination at night ●pain in lower abdomen. Immune Dysfunction●A general Ill or flu-like feeling, more frequent in the acute onset stage of the illness, less frequent in the chronic stages, most notably post-exertionally ●tender lymph nodes ●recurrent sore throat ●new food sensitivities ●new chemical sensitivities ●hyper-sensitivity to medications and their side- effects ●allergies. Sleep Dysfunction●frequent awakenings ●nightmares or agitated dreams ●non-restorative sleep ●variations in sleepiness and energy throughout the day ●hypersomnia (excessive sleeping) ●Restless legs syndrome ●periodic limb movement disorder (jerking or twitching during sleep). Neurological/Cognitive Symptoms●Easily confused ●Slow information processing ●Difficulty retrieving words●Occasional slurred speech ●Occasional dyslexia ●Difficulty with mathematics ●Easily distracted ●Forgetfulness (primarily short-term) ●Attention deficit ●Inability to focus vision and attention ●Inability to cope with fast-paced tasks ●Overall feeling of “spaciness” or “brainfog” Motor Disturbances:●Loss of muscular coordination ●Muscle weakness ●Muscle twitching ●Loss of balance and clumsiness Overload phenomena: ●hypersiensitivites to light, sound motion, odors ●Inability to block out background noise and focus on conversation●Informational overload with inability to multi-task ●Motor overload, with staggaring and weakness ●dizziness ●numbness●tinnitus (ringing in the ears) ●nausea ●shooting pain ●Overload may cause temporary immobilization. Neuroendocrine Manifestations ●loss of thermostatic stability (fluctuations in body temperature; fluctuations of cold and hot in different parts of the body; intolerance to extremes in air temperature; low body temperature) ●night sweats or other sweating episodes ●weight change, with loss of appetite in some patients or abnormal weight gain in others ●loss of adaptation to situations of overload ●anxiety●worsening of symptoms under increased stress (physical or emotional).

In other words: No, I don’t think that taking a magnesium supplement will make me all better. But thank you anyway. :)

Health, Happiness, Game On.

Night Life.

Published on by Mary Gelpi6 Comments

Once again, I’ve been up all night unable to fall asleep. Restlessness, achy legs and a moving mind have kept me up. But you know what the best remedy for insomnia is? Waking up! So I’ve been up reading poetry by Rumi and writing a little most the night. Here’s one.

A Still Heart

I have a friend
who closed shop on love.
When asking her what led her here
She placed one hand on her heart
And the stronger hand on her head.
“My memories,” she said. “My protection.”

She couldn’t forget
All the hurt
That broke her
Times before.
So she made up her mind
–eliminated risk,
Climbed in a benign box.

I grabbed her hand
The one on her head
and looked into her
with my third eye.

I have seen what love can do
It had killed me a few times, too.
But what she considers protection
In other light was a prison.
Hadn’t she heard?
The heart will continue to break
Until it breaks open.

All her memories
can do for her now
Is make her heart stand still.
And living things–
they die this way–
We are meant to move.

Health

Happiness

Insomnia.

How To Forgive.

Published on by Mary Gelpi19 Comments

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

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

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

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

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

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

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

Health, Happiness, Freedom.


Right Now O’Clock.

Published on by Mary Gelpi18 Comments

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

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

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

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

We can’t all be Ferraris!

Health and Happiness, 10 Miles at a Time.

Leggo My Ego

Published on by Mary Gelpi12 Comments

I hardly know where to begin in writing this post. It has been a tough weekend for me personally. I won’t get into the personal details, but I realize that out of conflict, pain, exhaustion and hurt, can come wisdom, understanding, and peace. The key is to be present to every moment and own the energy that you’re putting out into the world. This weekend has been an examination of my own ego, and there has been great pain in discovering it and the damage it has caused me (and others). But acknowledging this “darkness” is the first step on the way to real consciousness. This is what the spiritual masters talk about when they talk about enlightenment. If this sounds like mumbo jumbo psycho-babel crap, that’s fair. This is not something people talk openly a lot about. You don’t see the Kardashians gushing about their egos and unconsciousness and balance. Justin Beiber isn’t popular because he talks about a spiritual awakening! And yet, I bet even the Kardashians and Justin Bieber would have interest in what I found over the weekend, because most people will give you the same answer when you ask them what they’re looking for; and that is inner peace.

What I found over the weekend, was my ego. Dun. Dun. DUN. I have been reading spiritual books and teachings for a few years now. My mom has been an especially wise mentor for me because she has also devoted herself to the teachings of Carl Jung, Eckhart Tolle, Gary Zukav, Maya Angelou, Ken Willber, Wayne Dyer, and Caroline Myss among others. Whether she knows it or not, I’d enacted myself long ago as her protege, simply because she offered such a wealth of knowledge that always seemed to make sense and get to the root of issues quickly. To be honest, I wanted to know if I was handling a situation poorly. I wasn’t looking to be supported 100% by her or told that I’m right and whoever I’m up against is wrong. I simply want the truth, and she always seemed to have a way of finding it. So I have treasured her as a teacher. Since becoming too ill to work last year, I’ve begun reading texts on my own and attempted simply, to figure life out. Ya know, just for shits. I am so often left bewildered. Especially after painful circumstances. I am always asking What is the meaning of this? And that’s not a bad thing. Half of finding the answer is asking the question. There are many mysteries of life that I don’t think we’re meant to know all at once. But one step at a time, one breath at a time, I am beginning to unravel the truth of my self. The first step in unraveling this truth, is identifying and defining the ego. My ego. This is what I found this weekend. It’s about to get real up in here!

There are many definitions of ego in the realm that I am referring to it. But for starters, I think simplicity is best. Tolle’s definition of ego is simple: identification with form. (I am what I have.)  It’s a new concept to grasp and we typically don’t learn about ego this way. I always thought ego was a good thing. I associated it with pride, with who I was. But that is the first fallacy in regards to the ego. You are not you’re ego. And even further, You are not your thoughts. You are not your emotions. You are not your mind. So, the question. If I’m not those things, what in the hell am I? Is there anything left? And yes! There is! That’s the good news. Underneath the ego, the noise of your mind, the negativity of your thoughts, the pain of your emotions (inward and outward) you are a conscious being, a lightness (some would call it the soul), that when you’ve let the ego go, will shine through and bring you joy. It is where compassion, peace, and love reside. It’s the part of you that doesn’t die. The only way to let go of the ego is through consciousness; being awake. Just like the only way out of darkness is light. Have you ever felt like you can’t control your thoughts or emotions? Have you ever blamed other people for making you feel bad? I’m ashamed to admit I have. But the good news is, you don’t have to be victim to your or anyone else’s unconsciousness. You have a choice in the matter. You are not your thoughts, you are not your feelings, and you are not what’s happened to you. You can stop telling yourself a sad story.

This weekend I did something that, come to think of it, I don’t think I have ever done before. I turned my phone off…voluntarily. There are a few reasons why, but mostly, because I was stuck in the “noise” of a situation that was going nowhere. I could feel myself getting lost in it, with the truth nowhere in sight. So I disengaged. At first I was going to turn it off for just a few hours to give myself some separation and clarity. But a few hours went by, and I had started to feel better, so I gave myself the whole night. I woke up the next morning and decided a few more hours couldn’t hurt. I sat outside in the sun with Monty and began reading The Power of Now by Eckhart Tolle. Time got away from me. I was underlining whole passages and pages. Before I knew it, it was nighttime and I was 3/4 done with the book. I left my phone off for another 24 hours. It was great.

Do you ever hear a story about someone being a shithead and think to yourself “Oh shit, I’ve done that.”? Well, that’s basically how I felt for the first 100 pages of this book. It wasn’t easy realizing the things I did, but it was certainly necessary if I’m going to get better mentally and physically. Simply put, I found some major truth. I found the precise reality to a cloudy truth I had always thought anyway; that no one is responsible for my happiness or my sadness except me. My first inclination in reading that was of course, to fight it. What about people who have wronged me? What about the hurtful things people have done? Blah blah blah noise noise noise. That is the ego talking. It does this a lot. The truth is, a totally conscious person can’t be hurt. That’s not to say they can’t feel pain. If there are unfortunate circumstances like someone dying, a divorce, a miscarriage, there is going to be sadness felt there. But a conscious being also accepts what is happening in the moment, and can acknowledge that it will pass. They can’t be hurt by other peoples egos, because other peoples egos can’t survive in their presence. Not for long anyway. “Darkness can’t survive in the presence of light.” An unconscious person resists the present and this makes a difference. Consciousness is all about here and now. Past and future don’t exist. Regret about yesterday is from the ego. Anxiety about tomorrow is from the ego. Pain, depression and anxiety etc. are not natural states. Even though most people you know experience them. And that’s because most people you know are unconscious.

One of the biggest and hardest concepts to grasp is that time is manmade. We created it for practical purposes, but it has somehow become a very different institution. We carry the pain of yesterday around with us or the sad stories of our past or what we had or didn’t have growing up. Or on the opposite end, we dread tomorrow, or, we fantasize about tomorrow, imagining that’s when we’ll be happy. What all of these things have in common is that they deny the present moment. And the present moment is the only real thing there is. Can you prove tomorrow? Can you get yesterday back? No. (I’m assuming you don’t have access to the delorean) So naturally, we have to let go of our concept of time if we’re to understand this. If you’re constantly using the present as just a means of getting to the future or somewhere else, you’re missing the moment. You’re not present. I do this constantly. I hear it in others too. I can’t wait for Friday. Or I can’t wait until I have my own place. Or I can’t wait until I have money. Or now that I have money I can’t wait until I have more. See the never-endingness of it all? If you are to become awake in this moment, we’re talking this very second, you see that you have everything you could ever need, right in front of you. And if there is something we consider ‘wrong’ about this moment, we will cope with it. “You can always cope with the now. But you can never cope with the future,” he says. Or to put it another way, “There is never a time when your life is not ‘this moment.’ Is this not a fact?” Yeah but this moment sucks! That’s what I felt myself say. And that was me resisting the moment. The conscious me would accept where I am and be reassured that what I’m going through is exactly what I need to be going through to learn what I need in order to carry out my calling. Sometimes it’s about something bigger than you being at work, and that is certainly something the ego doesn’t like to hear.

My favorite passage in regards to letting go of past and future and existing solely in the here and now is a reference to animals and nature. (If you’re looking for a model of presence, dogs are a great example. They are ego-free) If you were to go into the wild and ask an eagle or lion what time it is, they would tell you “It’s right now” –because there is nothing else. Nature doesn’t operate yesterday or tomorrow. When it’s raining it gets wet. When the sun shines it soaks it up. When it’s night it sleeps. Something I have really struggled with is indecisiveness. Sometimes it takes me days or weeks to make even small decisions. Then after I’ve arrived at a decision, I think about what I didn’t choose. I wonder about other outcomes. This is, basically, insane. And I know it. So reading that passage about time and nature really resonated with me. “Stress is caused by being here and wanting to be there,” Tolle says. Sing it sister! Or..brother. His most simple advice; wherever you are, be there totally. Or as Ron Swanson puts it…

And you know who’s a great model of that? Monty. If we’re playing fetch, his world is the game of fetch. If I’m sick and in bed, he’s sleeping peacefully. He’s not demanding we play or asking why we’re not doing other things. If it’s dinner time he’s eating contentedly. Not asking why he has to eat the same shit all the time! He completely immerses himself in the now. Everything is enough. And that’s where my life work is beginning. Right. Now.

Health, Happiness, Consciousness.

For the Loved Ones of the Sick Ones

Published on by Mary Gelpi17 Comments

List of Characters:

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

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

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

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

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

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

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

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

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

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

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

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

Health, Happiness, and Compromise.

Who I Used to Be.

Published on by Mary Gelpi22 Comments

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

See? Don't I look alive?

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

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

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

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

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

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

Health, Happiness, and Awesome 90’s Photos.

From Bed.

Published on by Mary Gelpi27 Comments

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

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

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

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

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

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

Health, Happiness, Bed Bound.

Community College Dropout

Published on by Mary Gelpi27 Comments

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

Bye Bye Delgado. It's Been Real.

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

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

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

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

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

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

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

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

Let’s Talk About Dancing.

Published on by Mary Gelpi17 Comments

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

Mm hmm.

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

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

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

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

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

Here’s what Nepo writes about dancing:

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

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

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

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

Health, Happiness, and DANCE!

A Snails Pace

Published on by Mary Gelpi20 Comments

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

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

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

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

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

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

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

Then Stop.

Or do you feel like this after you exercise?

Then continue!

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

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

Health, Happiness, and Hang In There.

http://phoenixrising.me/

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

http://www.pandoranet.info/

AboutMECFS.org

Thanks, I’ll try that.

Published on by Mary Gelpi68 Comments

A story.

After working a couple of months full-time at the Art Gallery, I started calling in sick more and more frequently. I dreaded making the call. I dreaded hearing my bosses voice after I would have to, yet again, say I’d be late or not in at all. I was really lucky to have the boss I did because for all the times I was late and absent, he remained pretty understanding and encouraging. But he was only one guy. I worked in a gallery with 40 other people.

There are some inevitable things you’ll confront with this illness. And from the emails I’ve been reading recently, it isn’t just this illness. It’s all kinds of autoimmune diseases and beyond. The first inevitable thing you’ll confront: people who don’t believe you. I always wondered why that was. Why would I make up the stupidest sounding disease I have ever heard of? Chronic Fatigue Syndrome? Why don’t they just call it Tired-Lazy-Person-Disease. Anyway, I know people call-in sick when in actuality, they aren’t. That’s occurred since the 40 hour work week began, I imagine. The last 6 months of my job were more me faking healthy than sick. I was sick everyday. It was just a matter of, was I not too sick to be able to get through the 8 hours. Having a boss who believed me was a blessing. Unfortunately, the rest of the office…wasn’t  so sure. If I really think about it, I can’t totally blame them for their skepticism. Some young newby walks in the office with optimism in her eyes and excitement about having her own office supplies..then slowly…surely…shows up less…and less…and less. I knew the things they’d say when I called in. I heard what they would call me when I wasn’t there. I walked into enough rooms with that sense hanging in the air…that tangible feeling that you were the topic of discussion, and it wasn’t about how great you are! Some of them just looked at me with plain anger, which was hard for me to swallow. But I knew what they thought at the root of it: that it wasn’t fair. I got to miss all this work while they got their asses to the gallery everyday and on time. Everyone is tired, that’s no excuse. If they only knew how unfair it really was. I would’ve gladly traded with any of them. I always said that, but no one believed me.

The next thing you’re going to confront: advice. Sweet, unsolicited, unknowledgeable advice. And here’s how it will go. Have you tried acupuncture? Have you tried rolfing? You need to try acupressure. You need to re-set your bodies internal clock. You should do yoga, at least 3 times a week. You should work out, hard, every day. You need to drink more water! Have you ever considered going gluten-free? Dude, it’s probably the mold. You should avoid dairy, that’s what my mom did and now she’s all better! You’re eating too much salt. You just need to push through it. Massage therapy! Chiropractor! Holistic medicine! You should stop taking every pill you’re taking, cold turkey. I’d bet you’d feel better. Go running! Go to a psychiatrist! Go to India! I heard this thing about acai berries… Have you tried talking to God about it? You may dabble in Buddhism..that did a lot for me. I’m sure it’s nothing a little exercise couldn’t cure! If you just spent 2 weeks with me, I’d have you fixed in no time. Stop drinking coffee! Stop eating meat! Stop eating and drinking! Don’t sleep so much! Have you ever gotten your cavities filled? Ah, it’s your fillings then, they’re leaking toxic chemicals into your blood. You should try taking magnesium, you’ll feel better! I have something called Tylenol, will that help? 

And those are just a few..I could go on. Also, those are all real pieces of actual advice I’ve been given. And I’ve become pretty well-versed at receiving advice that I don’t want. And the response is this: Thanks, I’ll try that! The reason I say that is because, for me, I was tired of spending hours explaining to people that I had already tried pretty much everything, seen 10 doctors, and tried diet changes. People couldn’t understand that exercise made me worse and rest was actually good for me. By the end, you’re just tired. Tired of talking about it, tired of fighting people on it, tired of defending yourself, of convincing people you’re not crazy, you’re not lazy, and you’re not a basket case. By the end I didn’t care. Truthfully people just want to help you, and so they offer advice. And that’s fine. But, would you tell someone with aids to just drink more water? Or someone with cancer to just take more vitamins? Doubtful. Not unheard of, but doubtful. And that is why, it’s just so much easier and less exhausting to say: Thanks, I’ll try that. Smile and nod. Thank them for the advice, and keep moving. They’ll get it or they won’t. But whether they do or not is not what will get you better in the end. It sucks not to be believed. It sucks to be misunderstood. But when your energy level is already such a commodity, it becomes a matter of livelihood. I didn’t have it in me to fight the world anymore, so I let them say what they say and do what they do.

There’s a quote I’ve liked since I was a kid that I would play in my head when the “noise” of the world became too loud. It’s something like this:

No one knows what I am. Only I know what I am. If I were a giraffe, and someone called me a monkey, I’d think, No, actually, I’m a giraffe. “

So it’s not the deepest of quotes, but I enjoy the simplicity of it. And that’s how I started to have to see myself. I needed to stop proving what I was and what I wasn’t, and just be exactly what I was: a sarcastic sick kid trying to get through every day. And many times-failing! Everyone you meet has a story, has their own battle. And we’re all quick to think we know who everyone is, and put them in a box with a nice clean label on it. But inside we all know, it goes much further than that.

I’m sharing this story because I’ve received quite a few emails and responses about the loneliness in being sick, not being believed, and the difficulty in explaining their respective illnesses to people they care about. I am just one person and this is only one experience, but I think this is a big lesson. Allow yourself to be sick. Accept what is. Don’t run from it anymore. Don’t dwell on it either. Just acknowledge what is, and see where the clarity takes you. You’ll be surprised. My final thought is this. After a particularly hard day, a few days after I had lost my job and realized I would have to give up my apartment, I was angry. I was really sad but also really angry. I kept thinking about that word Fair, and how this Wasn’t! I don’t know where they came from, but when I laid down to sleep that night, these words came over me: You were trusted with this illness. And that, among all the health advice I’d ever received, made me feel better.

Health, Happiness, and Thanks! I’ll try that.

But chances are..I already have. :)