That sounds intense and nothing big really happened so maybe that’s a false setup.
It’s Friday night and I am alone and having one of those days. If my disposition were weather it’d be grey and off and on drizzly. If it were a band it’d be Coldplay. If I were a reality show character I’d be Bruce Jenner in those transition lenses he wears. OK so the point is it’s just been kind of a depressing day. For no particular reason but a few small ones and others I can’t pin down. I’ve had this headache which is also all over my face–for a week– and it’s not responsive to pain killers and it’s not a migraine. My whole jaw hurts blah blah blah. It’s been tough trying not to let the pain get me down. I think at some point it’s not the pain anymore that gets to you, it’s just not being able to offer your focus and energy to other things. It’s like a hangnail. Even a small pain just steals your thoughts, and after a while its annoying and exhausting. This is the point where my friends would make a joke about how bad my headache must hurt because I have such a big head. And then I’d say “thanks guys” and then we’d watch The Kardashians.
Anyway, for someone who loves being alone, thrives at being alone…I suddenly had that empty lonely feeling. And I don’t have it a lot. I really treasure solitude. But suddenly I had that feeling that I was the only person at my house at night and the world was at this party the world was partying and I was missing out and it made me a little sad. You know what the worst part of being single is? It’s not having someone to do nothing with. See a Friday night stayed in and watching crappy TV with someone you love is great. Or it feels fine anyway. But alone, crappy TV can get real sad. The other issue I might have is that I have a total addiction to my dog admittedly and I think it might be a problem. I can’t tell if it makes me the most kickass dog owner ever or the worst human being. I hang out with him a LOT and take him basically everywhere. And I worry about him when he’s not around. I wish I could nonchalantly yell “Oh it’s JUST A DOG” like so many people I hear. When does it become concerning? I think I’ve reached the point of concern, I’m not sure though. Although I DID go on a date last week and we ended up at a bar called the Bulldog because they allow dogs there and I definitely took Monty. But come on that’s normal. I’ve always let Monty pick my men. I’ll tell you about that date later. I guess. I just realized I don’t know who you are or if you’re reading and also why I’m writing this blog about absolutely nothing especially on a nothing night like tonight. But I’m in a careless enough mood that I’ll keep going. I mean clearly I have nothing else to do.
So it’s Friday night and I’m sitting on my couch and there is shit on TV. Alaskan Women Seeking Men, I Hate My Butt!, Last Call With Carson Daly. (How is that show still on?) I’m antsy and looking around at the walls of my living room. Disconnected thoughts are filing in and out of my mind. I consider rearranging the pictures I’ve hung. I consider rearranging the furniture in different ways. I wonder how many headache meds I would have to take in order for the pain to go without shutting the rest of my body down. Too many, I’ll try ice. I consider cutting my hair. I wonder what book I’ll read next. I want to read more. I need more books. Then I look at Monty. He was licking his butt. He felt me looking at him and stops and stares. “Monty,” I say. “Am I the most boring person in the world?” I swear to God, he yawned one of those huge yawns that’s like too large for his face and makes it vibrate at the end. Then he looks at me a few seconds more and goes back to licking things. I can’t explain it but I completely busted out loud laughing. Maybe at the tragedy of it all. How pathetic the night is and how even Monty knows it. Monty comes over, jumps up on the couch and laid his head on my lap. It felt awesome. I know I might have a problem with not pushing my boundaries enough socially and being a homebody and yada yada. But sometimes it’s just so nice; just us two. I know I need to try harder, but honestly, this often feels like enough.
PARTY TIME
It’s funny how small we can feel sometimes. When you think about the entire earth and how many people are on it and all the important things everyone is doing you start to question if you’re doing enough. Especially when you’re watching Alaskan Women Seeking Men. I don’t think we were put here just to play around. It’s a recreational world too and we shouldn’t forget that either. But I think it’s time for something new. And maybe that just means a haircut or changing my living room furniture or doing something significant like taking a risk and doing things that aren’t comfortable. I don’t know yet. But for real the seasons are turning and something is turning in me. Truly it was an OK week. I got a lot of writing done and hung out with my dog a lot and I picked flowers when it was nice outside. I am alone on a Friday night. And for a second that felt awful. And then it all felt like enough. And for now, enough is enough.
There were a few things I was going to write about this week. One was a response to an article that’s gone viral about why Generation Y is so unhappy. I almost wholeheartedly disagree with it, but I couldn’t finish. The second post was a “Breakup Playlist” that was really just a list of happy songs I composited that get me excited and I can’t help but dance to when they come on. And sadly, yes, a lot of the dancing I do these days is alone. But I enjoy it so lay off! The third was an observational piece about how impersonal life can be in the digital age of social media, where so many things are taken at face value and how someone’s online presence can be so far from the person they actually are yada yada yada. I began writing on all of these topics as my scattered mind couldn’t focus on just one, but there was something more important that kept nagging at me while I worked. Finally, I pulled the plug on these ideas. I’ll work on those later (unless they end up terrible which right now they are), because this post is for you, the reader. Because even though I sometimes have these grand ideas I I can’t wait to unleash, sometimes something else comes knocking and demands to be written. At that point there’s not a lot I can do except listen; type out the words and let my heart do the talking. There’s plenty of time for break-up playlists. This was something I needed to say now.
I’ll be honest, having a chronic illness, especially when it’s at its worst like it was for me most of last year, can be terribly lonely. As much as I love my friendships and romances and strong family bonds, it’s nearly impossible to keep them all up when you’re sick. One but more likely all of them will suffer. Last year the relationship I was in ended and as my health steadily declined, so did my social life. I remember just not answering the phone when it rang. I felt like I didn’t even have the energy to explain my mood, my condition, or apologize yet again for being a crappy friend or sister or whathaveyou. One of the hardest parts of the illness has always been what it’s done to me and the outside world. Last year was a dark one, but I was lucky enough to have family who took me in, and friends who were understanding when we went months without talking. I always liked that definition of a friend- someone who knows you but loves you anyway. :) I’ll say that being sick sort of dwindles down who the key people in your life are. Some survive the storm and some don’t, and it’s not really anything personal. Some people have needs you’re not able to meet with a condition like this, and truly you can’t blame them. I am an admitted flake, terrible at keeping up and correspondence, and I cancel at least half of the plans I make. This is mostly the fault of the illness, and it’s understandable why not many friendships are upheld through it. My circle is small, but I love everyone in it dearly, and they certainly love me back considering what they tolerate.
I think last Fall was one of the hardest times in my life. I was living in my sisters house in California. Home away from home away from home. I initially planned to go there for a month, but when my crash worsened and things like walking became hard, I ended up staying until Christmas, and everything felt out of control. Because it was. I was a difficult person then, and I feel a little bad for my behavior. My sister would always ask me to go eat dinner with her at my brother-in-law’s restaurant, but the thought of small talk with people I didn’t know was overwhelming. Sometimes it put me in a bad mood just thinking about it! I actually preferred being alone. I often felt more alone when surrounded by people but completely isolated on the inside. I hated who I had become–such a solitary hermit. But I truly just didn’t have the energy to even be polite. It was easier, and better I think, for me to just stay home. Which sounds terrible and depressing. Healthy people won’t get it. But truthfully relationships of any kind take work, they are two-sided, and I just didn’t have enough to give at that point. But the real reason I’m writing about this is because, beyond all the crappy days and reclusive tendencies, there was this community built on the blog. People reading it and commenting, people sending emails of gratitude or support or encouragement or all of the above, and it was truly remarkable to receive feedback like that, especially at a time where I felt really alone. I knew there were others like me and I wasn’t suffering alone. And although I didn’t know any of you truly, I knew of you because you reached out and were honest, and I read every word. It meant the world to have complete strangers rooting for me, some in other countries. It felt incredible not purely for personal reasons, but because I saw just how much positivity and love and support could be garnered by so many people who didn’t even know each other. It still gives me chills to this day; it shows what can happen when human beings come together for something good and optimistic. I think we’re all looking for a reason to be good. And while no, it didn’t cure me or fix all the problems, it did give me a real sense of hope that I could get better, that it wouldn’t always be like this, and even at times that if I never got better, this wonderful energy was still created and circling around the world. I didn’t do it, we did it. We put that out into the universe, and there’s something kind of magical about that. We’ve created some good together, and I think it’s something to be proud of.
Last week I posted about a promise I had made to myself years ago: that I would celebrate my 30th birthday in Paris. When I read people’s responses and support and encouragement for me to do something purely because it would make me happy and in turn, them happy, I felt the most love I ever have laying in bed and looking at a computer screen. Strangers telling me to go for it, that they’d donate money for me to do it, and insisting I go regardless of circumstance, was truly inspiring to me. I felt connected and after such a crappy year last year and feeling so far on the outside, watching everyone else live their lives while I felt like I was crumbling internally, that was such a powerful thing for me to feel. And needed to feel I should say. It’s easy to get stuck on your story, to live life from the outside looking in, to let things pass you by. But after seeing such a positive reaction from people, and seeing how me going after my dream and living with purpose was encouraging others too was simply unreal. But mostly, it was an inspiring and and abundant source of love to feel on my end. And that’s stuff you just can’t buy or put an amount on. It is truly priceless. So for that I want to say thank you. THANK YOU. THANK YOU A LOT. I felt a very long time ago that this blog wasn’t really just about or for me. It was for something greater. And I know that now more than ever. It’s about all of us.
As summer turns into Fall, (unless you’re in New Orleans in which case it’s still 90 degrees and there’s a tropical storm headed our way) I am reflecting on where I was last year at this time. I had no idea that some of the hardest months of my life were about to unfold. And in the darkest of times, moments where I couldn’t find myself in the world, I would always come across the words in a comment or an email from a reader that reminded me of something very simple but very important– I wasn’t alone. And if you’re reading this now, going through a hard time caused by anything- health, heartache, loneliness, insecurity, whatever- I hope you’ll know that you aren’t alone either. It was in those very dark but small moments, that the tiniest crack of light would shine in and let me know, we truly are all in this together. We’ve all got our battles, and we all experience things that make us question who we are and where we’re going and if we’ll ever get out of the hard time we face. I’m here to tell you, you do. I did. Many times actually. And the hard parts aren’t over. I am relatively young and life won’t stop throwing boulders or pebbles across my path. (If you’re listening God, I prefer pebbles. But, you know, do what you gotta do.) I just feel that one of the most important things that could ever so slightly drag me out of the dark, was this interconnectedness I’d feel with humanity, even though I had no social life…at all. Granted my sister tried, but I was mostly a grumpy curmudgeon. Sorry Amelie! Anyway, things have gotten better. My health, while still a major hurdle, is not nearly as bad as it was this time last year. I’ve reunited with friends. I wear pants a lot more now. ;) But it feels good to know that while last Fall was let’s face it, a shit show, I re-emerged. As we all do and will, if we can only hang on, remember that nothing is forever, and as lonely as it can feel, we are never truly alone. I mean it. And I’m alone a lot!
So, that’s it. Among all my other ideas, this one wouldn’t leave me alone. And I want to tell anyone reading, I read every comment on this blog and every email regarding it. I don’t always respond (I told you I’m a flakey friend and terrible with correspondence!) but I honestly take time and read all the feedback sent my way. And I LOVE hearing from everyone. The funny thing is how many emails begin with “I’m sure you get thousands of these but…” I assure you that’s not even close to the case. A few a week at best!! All of you have your own battles and wonderful, sometimes sad, sometimes hilarious, stories of tragedy and triumph, and I relish in reading them. I wish there was a scientific or spiritual way for me to prove or convey this, but all of that positive and loving energy sent my way goes right back into this project and the world at large. It’s such a cool community we’ve set up here. Remember this all started with two followers: my sister and my aunt Amy. And look at us now! :) Thank you for reading, writing, laughing, and crying with me. The community we’ve built is invaluable, and I always turn to it when I feel myself leaning towards seclusion or sadness. I hope you do the same. Because half of writing anything is having someone to read it. I think we’ve done well. Again, a million times over, thank you.
Monty was very excited to take this photo.
Health, Happiness, Merci.
*P.S. On September 26th, this blog turned two years old. Yaaay.
Have you ever promised yourself a gift? Something unnecessary, something perhaps even excessive, but something just for you, from you?
When I was 22, I left America to study a spring semester in France. I had always been drawn to Paris– the French, the language, the lifestyle–but I could never pinpoint why. I just felt I needed to go one day. I became so philosophical about wanting to go there and not understanding what was fueling my desire that finally I called my brother Nick in a strange self-induced panic. “I want to study a semester in France.” “Great!” he responded. “But I have no idea why!” A pause. “Who cares?”
It was my freshman year, and I often called Nick with my college-born troubles. I remember him telling me with such sincerity, “Mary, don’t think to hard about it. You want to study in France, so study in France! You’ll know why once you get there.” He was correct. Three and a half years and a crap-ton of paperwork later, I packed two ridiculously sized suitcases and prepared for life abroad.
Technically, the timing couldn’t have been worse. I felt very troubled leaving. It had been one of the hardest years of my mom and I’s life. Just less than a year earlier my step-dad died suddenly, and everything sort of stopped. None of us were prepared for that. As if that wasn’t hard enough, a few months later my black lab Brusky, who had just turned one year old, developed an infection and also died suddenly. Brusky was one of the only positive things my mom and I could count on that year. When things became intense or overwhelming or sad, he’d always do something to make us laugh. He was truly a wonderful dog. He was my sunshine. And when he died that morning, I really felt forgotten. There was an empty feeling of chaos inside. I watched the world spin on but I felt stuck standing still. I was jealous of happy people. I was doubtful for our future. And I was losing faith that we could ever be happy again. It was partially the reason I went to France. At that point it felt like I didn’t have a lot to lose.
But I was the last kid left in Louisiana. Most weekends I drove home from school to be with my mom. There are so many logistical things to tend to after someone dies. Just cancelling his cell phone with AT&T took months and months. My mom always told me to stay at school. That I didn’t need to come home and that she’d be fine. But when you see a parent lose someone they love, you see a piece of them go too. She’s tough, and she rarely reaches out for help. And that was mostly the reason I went– so she wouldn’t have to. When I received the acceptance letter to a university in a small town in France called Besançon, I was immediately excited and then immediately distraught. How could I leave my mom at such a pivotal time? She insisted I go. Insisted she’d be fine. The last thing she wanted was for Roger’s death to hinder us. I grappled with the idea of staying and the idea of going. Finally it felt like I had to go. If I stopped exploring, learning, living, loving, trying, then I’d have let fear and doubt and melancholy take over. We had to keep living, both of us, and maybe while I was gone, something wonderful could happen to her too. It didn’t make our goodbye at the airport any less sad. I held it together as best as I could, but still I felt the fear and the doubt and sadness right there on the surface. We hugged goodbye and I prayed all the way to Paris. It was the only thing I could do to keep my confidence alive in a decision that I wasn’t outwardly sure about.
Once in France, my brothers words rang true. Meeting amazing people who are still incredibly close friends. Watching the first snow fall. Cafe au lait and croissants and vin chaud and ridiculous business hours and cafes and little French children. It was perfect. All of it. I fell in love. With the country, with a boy, with my friends, and my life there. “This is why,” I thought. I’d found my answer. Something in my soul must have known I’d find happiness there, at a time where I’d forgotten what happiness even looked like. I lived in a space maybe half the size of my bedroom now with a twin bed and a desk, and I have never been happier. Best of all, I felt vibrantly alive for the first time in a long time.
Happy, oui.
Not only that, but while I was gone, my mom said yes to a coffee date, with extreme hesitance. A friend convinced her it was only coffee and so she went. The coffee date turned into a dinner date. Which turned into an every meal date, and falling in love and happily ever after. Would that have happened if I would’ve stayed? We’ll never know, but I’ll always wonder.
When leaving after an adventure like that, you make a lot of promises. You think you’ll go back. You think you’ll stay in touch with everyone. You’ll carry on traditions. But these are more optimistic than realistic. The real world resumes on when you return. (It’s awful!) Although I made two best friends there, one of which is My Stupid Friend Jess, very few of us stay in real touch. We reminisce. We get sad when we think about the fact that if we all went back now, it wouldn’t be the same. Our experience was wonderful, carefree, spontaneous– but impossible to repeat. It was five and a half months of not living in the real world as we know it. School was very easy, teachers were lax. They encouraged you to immerse yourself in any and everything, and if that meant missing class, pas de probleme! I loved it. It was truly perfect.
But I did make one promise that I have always intended to keep. I promised myself that I’d return to Paris and celebrate my 30th birthday there. I’ve thought about this promise throughout the years, and I think over the last two years I’d sort of lost hope and resorted to the idea that Paris wouldn’t happen. But when I turned 29 this year, that promise seemed to reignite inside me. I realized it’s only impossible if I say it is. I have a year to make this wish come true. I have no idea why I made the promise for my 30th birthday. I probably assumed I’d be wealthy and successful by then. Hahaha!!! Life is funny.
So I’m not exactly wealthy and successful (yet) but I still have 10 1/2 months until my 30th. A lot can happen in that amount of time. I know that work is required of me. I know there is a way for me to have this illness but still contribute in a meaningful way and support myself and Monty and pay back all the debts I’ve incurred along the way! I truly think it’s possible. I constantly see items on TV or in magazines and think ah, when I’m a millionaire, I’ll totally have a temperpedic mattress and my own jet for travel so I’m not subjected to modern commercial air travel. They are fantasies, sure, but something tells me they could really happen. It’s not like this type of success doesn’t exist. It’s not impossible! It’s just going to require getting creative. Most people don’t make millions from bed, but it’s not that far off the radar. I mean the Kardashians did it!
Anyway, I don’t have the money yet but I haven’t aggressively tried to get it. I’ll need to strategize. And maybe I won’t be in great health, and it will be different than last time and I won’t be able to walk the city as freely. But I’m going to turn 30 no matter what. Here or there. And if I’m sick here, why not be sick there? I don’t mind being sick in Paris! And if it’s just me, alone on a terrace, watching the Eiffel from afar, that’s great too. As long as I am choosing life, and honoring my passions and keeping my dreams alive and not stifled, I don’t think I can really go wrong. I don’t know how this is all going to fall in place, but somewhere deep, someplace where I once felt that initial drive to go and didn’t know why, I feel that it will happen. And if I keep letting the illness infringe on every dream, I’ll never get anywhere. Things will stay the same. And once you stop dreaming, what is the point really? This was a promise I made to myself. Not for a boy, not to prove anything, just a gift I promised to my soul. Last time I left, it was a troubling time and I was uncertain, but once I arrived it all made sense. It appears to be that way again.
I’ve neglected my writing routine for a solid few weeks and I attribute that solely to distraction. One particular thing. A person. It’s a person.
That person is Rob Lowe. Just kidding, it’s not Rob Lowe. But that’d be a funny anecdote wouldn’t it.
Unfortunately or fortunately, I have to be alone to write. (Duh) Very alone. And by that I don’t mean lonely, although it can get that way. But even someone in the next room, doing something else, watching some movie, talking on the phone–it all feels exponentially more important that I be a part of their experience in the other room, even if it is just watching Robinhood Men In Tights which for the record, I’ve seen. But someone being over there and me being over here smells something like missing out, and as a full-fledged youngest child, I’ve lived 29 years trying to avoid just that. I think all youngest children do.
I’ve been spending time with my unofficially official ex-boyfriend/boyfriend/best friend/comrade/casual dating kissing partner. And we spoon too. It’s all very simple. We’ve known each other ten years and been through a lot including tumultuous breakups and taking turns carrying one another. We’ve been through things that either harden you or strengthen you and somehow rounded out in the middle. It seems to me we’re on the same learning curve. It’s the only way I can explain how after so many ups and downs we still seem to find one another, each wiser from their mistakes, and seeing in each other something that has always been there. Of course maybe all this is way too analytical. Maybe simply he was my first love and I was his and some part of that just never goes away. Regardless, he went away this morning on an adventure. The kind people talk about but rarely actually embark on.
Life in a Bag.
He packed his life in a green hiking backpack and is starting out in Nicaragua– and that is about as far as his plans go. One of his plans involves staying and working at a hostel near Leon, where he will lead expeditions to the top of a volcano and then get down by surfing down it. I remember I was eating yogurt in my pajamas, exhausted after doing something undoubtedly small and stupid, when he told me that plan. I laughed a little as I envisioned his day versus mine while taking another bite. “Our lives are so different.”
In that way he’s kind of my hero. For one thing, he’s been blessed with a body that works and he is using it to his advantage. Pushing it, training it, challenging it and paying very little. He is strong and coordinated and a fast learner. This is of course something I’ve been unable to keep up with him on. And that’s OK. I’m learning to be content from the passenger side. I’ve actually come to enjoy and take pleasure out of watching people do what they want and go on adventures and seek what makes them happy. You don’t need to be strong to do that. At a fundamental and simple level, this is where human beings can be very wonderful additions in each others lives. If we merely nudge our friends in the direction of happiness, we’ve at least done something.
It’s funny such a thrill-seeking adventurous soul would ever have any attraction to the sick bag of bones called me. I guess I wasn’t always this sick, but still, life with a chronically ill person can be slow-paced and sedentary and a downright pain in the ass. But I guess all of life isn’t a thrill. At the end of the day whether you surfed down a volcano or not, you need a good snuggle partner and I am a pretty DANK SPOONER YALL.
hehe
He doesn’t know how long he’ll be gone. At least six months, or until the money runs out. We made no real plan of contact or correspondence. I know that this is an adventure he’s going on truly with himself, and he should be free to explore everything along his path. No ties or obligations to the homeland. Clean slate. But on the way to the airport I felt myself squeezing his hand tighter than normal. I guess that’s to be expected when facing the unknown.
Then I had that all too-human experience of returning to a house after an airport-goodbye with that hush all over and the remnants of someone in all the rooms. It’s all a little quieter and things feel hollowed out; you know it’s the start of something new whether you wanted it or not. At the same time, my own adventure is beginning here. Now that I have my solitude back, I have to get to writing. And reading. And arts and crafts And following my own glimpses of joy. It may not lead me to volcano surfing but it could get me somewhere close. Like healing yoga or gluten-free breakfast cookies!
Anyway I never much write about my love life, or lack thereof, but it all feels sticky in my brain and I am hoping that by releasing this feeling I can continue on with other endeavors. I am happy for my friend who is following his bliss– and Gator if you’re reading, be careful out there! If you died out there I’d be really annoyed. I know I have to let go and I need not to lose myself in someone else’s tales. For a while there I was getting so caught up in his life I was forgetting to tend to my own. Marianne Williamson says most of our problems stem from forgetting who we are, and that rings so true to me now. Time to move onward. Time to live and let live.
How come no one ever warned me about how hard your twenties are?
Well first, let me say hi. I returned last week from a medicinal tour of America. Yeah! I had to see my doctors in Colorado and Miami–Which means I had to take part in modern American air travel which means I felt like crap a lot. I went to Colorado and felt absolutely terrible the whole time I was there. The funny thing is, despite feeling awful, I had a really great trip. I stayed with my grandma at her assisted living residence. But judging what my days were like and what her days were like, you’d guess I was the 83-year-old and she was 28. She lives a very active, involved, and social life. She wakes up by 5 and it seems like she doesn’t stop until she sits in her recliner chair at night. She can hardly keep her eyes open through the news. Me, I slept mostly. She brought my food at normal food hours and finally after being completely fatigued and short of breath for 3 days, my uncle Mike hooked me up to her oxygen tank she uses at night. So I looked like this most of the time.
Air please thank you.
The extra oxygen helped, but I was still out of sorts the whole time. Weak, Dizzy, Fatigued Yada Yada Yada. Luckily my grandma is one of the easiest people to be around. We talked a lot while I was there. I love hearing her stories. I love how happy she is at her age. I love that grandmas exist. I used to fear growing old, but watching her, I don’t anymore. In fact, I’m ready to stop being young and stupid.
I ask about a warning I never got because this Saturday I will turn 29. The last year of my twenties. It seems typical to freak out a little when the big three-oh approaches on the horizon. I sense that a bit. But at the same time, my twenties have been really hard. And nobody warned me! Though I don’t know who would, and it wouldn’t really make a difference would it. There’s been tragedy and heartache and some things I didn’t think I’d find my way out of. But, alas, I survived. I laugh because the more people I ask about their twenties , the more I hear people say that those were some of their toughest years. In fact most people said their 30′s were great and my grandma insists your 40’s are the best. Hers were anyway. I don’t know what makes them so, tortured, your twenties. Mine have felt mostly uphill. You know how babies go through the “terrible twos”? Well maybe your twenties are the adult version of that. I think it’s an odd time. You’re no longer an adolescent at all, but the college experience isn’t quite a real-world experience. I went to a University of 30,000 people, but still, it felt like a bubble. After leaving, it felt a little, anti-climatic? It’s like you’ve got all these credentials to prove that you’re an adult now, and the world expects that from you. But there’s still so much to figure out. Then again, I guess everyone is still trying to figure it out. The most important thing is to figure yourself out. I guess by your 30’s you’ve got a pretty good grasp on who you are, and that makes things easier in general. Have you ever hung out with someone who is unsure of themselves, who needs approval for everything? It’s exhausting, and it stems from not having a good hold of themselves. Sadly, we’ve probably all been there. I have to say that not really having my own home or my own money sort of stripped down my identity. I had to start over in a way. It was humbling but it also helped me get to know myself better. When you lose all these external things, it forces you to go within.
Then again, I can’t deny that my twenties had some amazing parts to it. I fell in love for the first time. I lived in France. I published my first article. I traveled and I made incredible, life long friends. I wrote a blog that became bigger than me. It’s had its perks. But I must admit, a part of me is banking on it getting a little easier in my 30’s. Like I’ll really get to enjoy all the wonderful things I’ve gathered with me along the way. A girl can dream.
A few days ago, I found a journal that my dad kept. It feels like I found lost treasure. Of course it’s always extra special when you’re reading someones written words after they’re gone. I read it with such a sense of wonderment. I was only 12 when he died, so I wasn’t really able to experience who my dad was an adult. I feel sad to have missed out on it, but at the same time, reading this journal has helped me to know the man I wasn’t able to know as a kid. I admit I completely idolize my father. It’s easy to do–he was a wonderful person and anyone who knew him would tell you that. He was a lot of people’s best friend. I’ve only ever heard of the wonderful things he did and the amazing person he was. I remember him yelling only once, and that was at my sister for not eating the disgusting buckwheat pancakes he cooked for breakfast. That night he bought her yellow roses, apologizing for having gotten upset.
In other words, he was Mother Theresa. And I often wonder if I am living up to how good he was or how generous he was. Furthermore, I compare other people to who he was, setting a really high bar particularly for the men in my life. Which is for the most part, good. It’s fine to have high standards. But sometimes I wonder if the bar is set so high that no one could live up to it. I need to remember that my dad was still human. He got upset sometimes. He judged people sometimes. He even cursed at our dog Bacchus while throwing rocks and chasing him down the street in his suit and tie. He slipped up like we all do, and I need to remember that. Reading the journal has brought to light the very human nature of my dad that I sometimes forget was there. The best part was, in the journal he describes each of my siblings and me and what makes us each unique. There on the last page were his words about me. Reading them was such a gift. It felt like I was sent an early birthday present, from somewhere over there. :)
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Anyway, I’ve become a little distracted. I try to write but I just feel more an urge to read. Which is OK so long as this doesn’t turn into a writing breakup. I need to stay focused. But it’s been gloomy and grey and rainy out–so it’s perfect read and nap weather. Know what I mean jellybean? Anyway, all this reading and napping jazz has me worn out. I’m off to dream world.
It’s been one of those weeks. I realize the title of this post is a little dry, emotionless, business-like even. But I don’t mean it that way. It’s been something I’ve thought and written about before, and in the wake of tragedy the words have been busying my brain. (Hence me writing now, at 3:30 am)
A good friend of mine lost her love suddenly and tragically this week. I hardly knew him at all, but of course in the hazy aftermath of the realization that he’s gone, and the strong sadness I feel for my friend who lost him, we all can’t help that feeling that so often comes in death, sudden or not. He was too young. This wasn’t supposed to happen. Things like this happen to other people. Death is always a knock at someone else’s door. Rarely do we feel accepting when it knocks at our own. Or comes into our neighborhood anyway.
The worst of it is, there truly isn’t much to say in these situations. And as humans, as fixers and problem solvers, it leaves us all a little stumped. A little quiet. There are few words I can think to say to my friend who lost him. Accept to hold on. That we as friends will hold her hand through it. That it will be OK. But first it will be hard and trying and she already knows that. One day at a time I would tell her. Some days, one hour.
As having lost a dad to cancer–a slower death, and a step dad to heart attack- an abrupt and unforseen death, I can say that both are difficult in different ways. At least in cancer you have time to prepare your affairs to some extent. I remember my father in his bathrobe, stick thin except for his swollen legs, on our back patio in the sun picking out music for his funeral. Laughing. Having a wonderful time. And that memory really sticks with me. It made me for once, unafraid of death. With my step-father it was different. No preparation, no time to really process it. He was here and then he wasn’t. Alive then in the ground. And what do you say to a mother who loses the second love of her life? How do you convince her there is design in all this? In the depth and solitude of grief, it’s hard to find reason in any of it. I know that feeling very well. And vague phrases about life and God and a reason for things, often fall flat. In the moment of pain, you just have to feel it and grieve it and keep on going. This is life after all. Peaks and valleys. And here I go with the vague phrases about our temporary existence. I’ll stop.
What I really want to say, is that I feel a real duty in being there for humankind when they lose someone they love. Mostly because I remember what helped and what didn’t in past times of tragedy. And also because there is no education in all this. No preparation in school for what to say and how to act when someone we know has died. And for anyone reading this, it may seem abundantly clear how lacking we are in this culture of behavior in death. There is, or maybe there should be etiquette in it. And so many lack it. I remember a family friend calling after we lost Roger. “What are you guys going to do?!?!” She pleaded to me on the phone. “And your sister is getting married next week!! In the same place your mother was married?! What will she do? Will your mother keep the house?!” I sat on the phone quiet, with tears running down my face. “I don’t know” is all I could say. And then, silence. Because I didn’t know. There was no way to know what to do next. Like I said, one day at a time. I just remember thinking that asking so many questions at that time wasn’t very helpful. In fact, it was the opposite. It’s not at all a time to start changing major life plans or rearranging things. Mourning is a process, and we have to be patient. The most helpful people in that time of crisis, were those who made small decisions for my mother, and didn’t bombard her with questions. A house in a time of grief is filled with flowers and food sent and relatives and friends. There are logistical things to take care of. There is damage control to do. And that’s what we all did for my mom, attempting not to bother her with details. I know this sounds perverted, but in some ways it can be a really beautiful time. It is when we truly acknowledge what it is to be human. We show our love without hesitation. We hold each other in tears and cry with them or let them cry on us. With this embrace we communicate that their pain is our pain too. In death we’re all the same.
I am a severe lover of animals and what they can teach human beings. (Far more than we give them credit for, I think) In grief I am reminded of elephants, one of the only other animals that are noted to grieve physically. They allow themselves to cry. They can be seen caressing the body after the animal has died, and different, distinct behavior can be observed of a matriarch even years after she loses a baby. Surviving elephants are known to stand together in their herd by the body of a fallen one in silence and stillness. Undoubtedly, they exude sorrow and seem to have some sort of formal grieving process, even beyond physical tears. Whenever I think of someone who will need help in their grief, I think of the elephants, standing by one another. They seem to convey to us, it’s not something to do alone.
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I remember at the time of Rogers death, some of the most poignant times and helpful moments were those with no words at all. As each of my mothers four children and two step children made their way to our house, each hugged my mom, and both simply cried. I remember her weak voice, but her warm body when we hugged for a while. I live closest to home so I was the first kid to get there. Walking up our porch steps I thought “What will I say?” When we met eyes all she said was my name and then we hugged and cried together for what felt like a long time. But truly, that seemed the mose appropriate thing to do. The only thing to do. There were no words to say then. Helping someone grieve and truly being there for a fellow family member or friend is not so much a matter of having the right words to say but more a matter of simply being there. A warm body to embrace when the reality is too much. A literal shoulder to cry on. Someone who allows us our sadness.
For many people, the crying makes them uncomfortable, or the silence does. But crying is just a part of our grief and something we have to do. It’s a sign of us coming to terms with death. It will come out some way or another. We’re so quick to hush the griever and tell them its OK. But I think it’s acceptable to admit that things suck right now and the creator seems like an idiot and even crack jokes when the timing is right. I never cried or laughed so much as the week that Roger died. Which may sound morbid but it really wasn’t. Someone’s death brings on too the celebration of their life. It’s a time to tell stories and toast to their quarks and remember their beauty. Crying and laughter will ensue, sometimes in the same breath. And maybe even drunken debauchery. At any rate, I want to tell my friend, and anyone in the throes of grief, that it’s OK to cry and it’s OK to laugh and it’s OK to throw plates at the wall. Anything you feel is OK honestly, and you just need to do what feels right to you. There’s no right way to do it.
I didn’t have an answer for the woman on the phone with so many questions before. I couldn’t have known that a year later my mother would fall in love with the brother of my dads best friend and that even a tragic story like this would have its own happy ending. And maybe that was one of the biggest things Rogers death showed me; it was an end, but not the end. The story would go on. And that’s what I want my friend and anyone in the depths of despair to know. The only adage that gave me hope was remembering that This too shall pass. And it did.
It’s raining. And whenever it rains it feels easier to write. So I’m forcing myself to sit down, because lately, the words haven’t come as easy. I have this recurring nightmare type of thing, although it doesn’t come at night–it’s more a dull anxiety beyond the curtain in my brain- that one day I’ll wake up, and have nothing left to say. Nothing left to write. None of my ideas will be new. Whatever creative juices that used to run through me will have all run dry and I’ll be sitting there, blank pages in front of me, and have nothing. left. to say. Luckily, that day is not today. I have some stuff to say I guess.
The funny thing about my little recurring nightmare, is that ironically, the only way to avoid it is to keep on writing. The longer I go without doing it, the harder it becomes. Sometimes I cringe at what I’ve written, and I’ve deleted entire pages of text that just didn’t seem to “do it” for me. But this is my art form and I care about it. It isn’t really a hobby I do on the side anymore. It is my principal work for now and once you’ve come to care this much about what you do, you really have to nurture it or it will fade. Like a marriage of sorts, or any relationship at that. The interesting part of it is that continuing to produce only gives way to more creativity and newer ideas. Not the other way around. It’s not some finite jar you reach the bottom of. My nightmare is possible I suppose, but more likely from me having abandoned the work, not from literally running out of ideas. If the universe is infinite than it’s true, our ideas can’t run dry.
I have to remind myself pretty regularly that whether the words come easy or hard, to just keep going. If you give in, well then what kind of a writer are you? I think beyond your final product, being an artist is in the way you live and in how much you give of yourself. Not just when inspiration comes but also when it doesn’t. There is debate in the literary world on whether or not writers block actually exists. I can say that without a doubt, there are times when it’s easy and times when it’s alarmingly difficult, but I think the point is that you just keep plugging away. It was Picasso who said that inspiration exists, but it has to find you working first. You can reject entire pages later if you need to, and there’s no harm in discerning good work from bad work even if a great majority of it is bad. It’s nothing you can hurry or fake or force. You just have to keep working humbly and the right words always find their way out. Think of Michelangelo sculpting his masterpieces like David. He said it was his job to carve away the excess, chip away at everything that wasn’t David until David emerged.
I know that the worst I can do now is let a gift pass me by. In stillness I know that being capable of writing is not something I own but something that was given to me. And I feel that by not putting it to use is letting someone down somewhere. I fight lethargy. I fight distraction. I fight excuses. It’s been a while since I’ve really sat down and put my words to use. And I have to remind myself everyday that very easily I can let all this slip by me. It takes commitment and participation on my end and sometimes I actually have to talk to myself out loud and force myself to move things through me. I do this because it’s not about me. It’s about something bigger and longer-lasting than me. And I don’t know what that is yet. But I know I have to keep at it. And I guess on this rainy Thursday, I am being reminded in more ways than one to keep going. Keep writing. And someday the pieces of it all will begin to make sense. Carl Jung said the details of his life would only make sense in the context of the centuries. Maybe that’s the ticket.
Sometimes when I’m sad or frustrated or just looking for something to make smile, I look at this picture: It’s the passport photo of my 1-year-old niece, Olive. It’s funny how just an image can cheer us up or change our energy. Any photo of my nieces tend to brighten me up, but this one in particular makes me happy. Cutest passport in the history of time? I think so. Some things are too cute, words will only spoil them. So I’ll leave this one alone.
Health, Happiness, and Indecently Cute Passport Photos
Most mornings start out the same for me. My eyes peel open slowly like velcro. My insides feel like they want out. Everything feels out of balance. I throw pills in my mouth, make my pot of coffee, let Monty out, and wait to feel human again. It isn’t the best…mornings have always been the hardest. But roughly an hour later, I start to feel better. The pain subsides. The disoriented, dizzy haze fades, and I sip coffee slowly and let my thoughts organize themselves. Once I’m human again, Monty starts making noises that imply if we don’t go outside and play in the pool soon he is going to explode or implode or something of that nature, so we go. He jumps in immediately, I sit in the water on the first step, and the day really starts. I’ve come to love our routine. It feels good spending so much time outside. Especially after a year of feeling so imprisoned to the indoors. Lately, the last step of morning involves saving frogs from the pool. They are really tiny; cute actually. Usually there are at least 5 of them. I try to keep them together, like they are some kind of family I’m rescuing and I don’t want the children to get separated. I have no idea why I feel this obligation to save them, but I do, and so I do.
small friends.
They are such incredibly small animals, sometimes I just watch them. I feel bad when I find a floater who didn’t make it. I scan the sides of the pool twice where there are usually one or two and then the two round filters that catch the extra debris. I then usually carry them to the nearby ditch so they can hangout in natural water. Last night, Monty was muddy so I walked him out to the pool to clean him off, (this is now what we consider bath time) and when we approached I heard a loud splash of something that jumped in. When I looked in the filter, a huge frog was in there, spinning from the pump circulation. Certainly he would have died in there. The steps are too deep for them to jump back out. I took him from the filter and released him in the garden, and told Monty to be gentle as he sniffed up close after every hop he took. Then I played “Folsom Prison Blues” to him on my guitar because I learned that song recently and it’s really fun to play. And what’s the frog going to do? Walk out on my concert? Come to think of it that is what happened, but you see my point.
Anyway, it’s interesting to look at such physically tiny life that we normally never see. There’s plenty around here. Including wolf spiders that are INSANELY large and terrifying-looking, but ultimately harmless. So when they’re inside I catch them in plastic cups and throw them outside, basically screeching the whole time because if it escaped the cup and crawled on my hand I’m pretty sure I would pee myself.
Dear God.
There is a huge variety of birds; there are mice and turtles, spiders and lizards, and even these tiny bunnies that Monty chases away. I like watching their world. Something about it makes my problems feel smaller, and I don’t know what the explanation is for that.
Snapper?!
Anyway, I really don’t like killing anything alive. Especially because I don’t feel like they are in my territory but that I am in theirs…and it seems so pointless to kill them. There was a time I wouldn’t mind killing tiny things, I think. But now the idea doesn’t sit right with me. (Except mosquitoes, screw them.) So I catch them and release them. Save them from the filters. If anything, it helps me feel like I’ve done something. There are many stationary days. Sleep filled and cloudy. It makes sense to save something from drowning if only because I haven’t done anything else that day. I don’t have to, but I can. Might as well save a frog or five.
I’ve been pretty taken by these Day Lilly flowers blooming outside. I like that their entire purpose (for me) is just to be something delightful to look at. To be simple and beautiful reminders. It took years and years of me hearing the term “Day Lily” being thrown around as merely words assigned to a flower to one day, just last week, finally putting it together that they are named this way because they bloom for merely a day. (Duh.) They are such vibrant and roaring things. They’re like little poems themselves that don’t require writing. Flowers often strike me as delicate but these specifically do not. They’re almost unruly. They are stunning colors and you’ll find yourself lost looking in their center, unaware of time. Tolle refers to flowers as “Windows into the formless” and that makes sense when looking at these lilies. They’re incredible creatures, and they only last a day.
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If you’ve never read Eckhart Tolle’s A New Earth, he begins the book with a description about the first flower ever to bloom on our planet, and why that is important to our existence and collective consciousness now. It’s quite a beautiful passage. So here it is:
Earth, 114 million years ago, one morning just after sunrise: The first flower ever to appear on the planet opens up to receive the rays of the sun. Prior to this momentous event that heralds an evolutionary transformation in the life of plants, the planet had already been covered in vegetation for millions of years. The first flower probably did not survive for long, and flowers must have remained an isolated phenomena, since conditions were most likely not yet favorable for a widespread flowering to occur. One day, however, a critical threshold was reached, and suddenly there would have been an explosion of color and scent all over the planet– if a perceiving consciousness had been there to witness it.
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I really love this description and the image of such a large, simultaneous blooming. But the deeper point he goes on to make is that flowers were most likely the first things human beings came to value “that had no real utilitarian purpose for them–that is to say, were not linked in some way to survival.” He attributes our fascination with flowers to their ethereal quality, calling them “temporary manifestations of the underlying One Consciousness.” Since a flower is a glimpse into the formless, and ego is described as “identification with form” (materialism, i.e. I am what I have) we can say that the simple act of looking at flowers is an opportunity for us to see with our soul and not our eyes. To drop our egos for a moment. Physically the flowers are beautiful, and underneath they represent the joy of formless beauty. You don’t have to “own” a flower to enjoy it. It’s interesting too to witness how the entire atmosphere of a room can change once you put a vase of real flowers in the center. Or even one flower in a small vase. Somehow, it makes a difference. It changes things.
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To think about beauty and purpose in terms of time, it occurs to me that only humans would consider a day not long enough for something to exist. If we were told we could be beautiful and happy and perfect, but we could only last a day, would we take on the endeavor? It seems like we’d demand more time–enter some boardroom negotiation with the creator. And yet, some of us exist on earth for only a little while. There are so many lives cut short, and as survivors we see it as indecent. It feels, to us, like they were never given a chance. They were never able to really live. But maybe, like the day lilies, one day of life is more than enough time for us to serve our purpose. It’s hard to grasp conceptually. Time is something my mind busies itself with at night–until I think of the concept of eternity for too long and the thought becomes too intense and my brain explodes. It’s pretty frustrating, you can imagine. Gary Zukav once described life in terms of time as “the eternal moment” and sometimes that makes perfect sense to me and sometimes it’s not enough. It’s almost too simple. But that’s how I imagine a lot of the secrets of the universe to reveal themselves. Complex, large ideas executed very simply. Maybe the better word for it is elegant.
Maybe I’ve made some far-reaching metaphors here. The truth is, flowers are pretty things to look at mostly, and possibly I’m ruining their beauty by cluttering them up with philosophy. But it’s an interesting investigation to discover why we as humans, often so entrenched on utilitarian things, furthering our purpose, working harder and faster and longer, can every once in a while stop our busy lives and look into flowers and feel a sense of ease and simplicity. We may smile looking at them without even knowing it. It’s interesting that in our modern society, flowers have come to serve the purpose of a wide spectrum of emotions. They’re a way to say “I Love You” and “I’m Sorry.” We use them to celebrate life and death. It’s no mystery why people say “Stop and smell the roses.” Flowers are small and silent, their scent often subtle–requiring you to drop everything and stick your nose right into the bloom to really take it in. I think once I just thought they were pretty things to look at and that was all. But I’m finding more and more that simple and beautiful things, selfless providers, (flowers, dogs, sunsets) are much more in tune to our purpose here and the work we do. If ego is the blueprint for dysfunction like Tolle says, perhaps flowers are the blueprint to consciousness. If even just for a day.
Health, Happiness, Day Lilies
*I took these photos on my iphone and they haven’t been enhanced. For realsy!
Today it is hard to wake up. It is hard to move my fingers and hold this pen. Everything is heavy as though my insides are all made out of lead. If you’ve ever tried running underwater in the deep end of the pool, then you’ve had a glimpse of it. It’s hard to say why my body has backtracked these few days. Last week felt like a good one, more solid than the past, and this week things fell apart. Did I get too sucked in? Did I overindulge in the tasks of the busy world? The fast work. The chattery world. The one that I used to think didn’t have room or time for the sick? (I’ve changed my mind on that one.)This is often the culprit–engaging in too many things that in the end don’t really matter.
So now I will rest. I will sit in the room with the big windows and let the light in. The dishes will wait. Paperwork will wait. Even Monty will wait. Every once in a while he’ll get a burst. He’ll paw at my chair- but behind his brown eyes, sometimes so deep and intense I wonder where his mind is- but he knows that today will have to be one of rest. He curls into the half moon shape at the base of the chair, back to doggy-chasing rabbits-gratuitous bacon-dream world. I apologize and I don’t know if he understands or cares, but he is a creature of the present and for that fact alone he doesn’t seem to mind. It isn’t in his DNA to mind. When we rest we rest and when we play we play and there’s no good reason to cry or complain when we’re doing one and not the other.
Even though it’s a sick day, a string of sick days that always has the grim potential to turn into months of sicks days, I want the world to know that it doesn’t feel like suffering. It just feels like something the day brought- as though it were sunshine or rain or an LL Bean catalog in the mail. It doesn’t feel personal. I know people who take offense to the rain. How dare it rain on my wedding day! Who cares? Nature is balance, nothing more. I’ve been practicing putting the sickness in the same category as the behavior of nature. It takes the sting of it away. Today is Wednesday. It’s humid and raining off and on. My limbs are heavy and stiff and my fingers don’t fold so easily into my palm. The invisible wet blanket of the illness I carry is extra wet–maybe from the rain! But none of this has anything to do with how happy I can be. How much joy I can find.
The things that thrill me still exist. Monty’s tail still wags when he sleeps. The smell of the magnolia tree outside is heightened from the rain. I have a house for Monty and me. A home base that isn’t impatient at all when my life has to slow down. I don’t have to run from sick days. I can let them come and let them leave and not get upset in the meantime. Simple pleasures still exist. My eyes can still take them in. And even if my eyes give out on me, my heart will still know the joy of it. My soul is learning to open slowly, much like the magnolia I picked that is now wide open at my windowsill. I am hanging on to life’s little treasures and remembering and emphasizing and reminding my busy brain that all of these things exist no matter what condition my body is in or what kind of outlook I have. I can stay closed until I think life is going my way or I can open up wide to the world and the sun and every person and animal I meet. It is in fact, up to me. If it’s left up to anything else, then happiness will be a constant, conditional pursuit and never actually attainable. I think when you’re around happy things enough, you start to see where they have it right. Today is Wednesday. It’s muggy and hot. I am heavy and dragging. It will be a good day.
Mastery of Life is the Opposite of Control. -Tolle
For as long as I can remember, my mother has never been one for presents. Specifically cutesy presents like mugs that say # 1 Mom! or trinket-type gifts like the kind from the Hallmark store. I guess at her age and after four children, she’s accumulated enough “stuff” to last until her end. She gets it. She’s the worlds greatest mom. Enough with the mugs already! It’s not that she isn’t sentimental, because she is. It’s more that now, those $20 items from the mall just seem gratuitous. She will always say “Thank You” to a gift but I know she’d rather we save our money or donated it to someone or something that really needs it. It seems like free, homemade gifts have always been her favorite. Since I’m living under her roof and on her dime, it wouldn’t make sense to buy her a gift anyway. It’d be with her money! I’m like the little drummer boy but all I have to give are words. “I have no gift to bring Pa Rum Pum Pum Pum!” Anyway, I guess every mom just likes to know they were thought of in a meaningful way. I’m not a parent so I couldn’t know, but I’ve heard it’s both the hardest and the most rewarding job on the planet. Most of the time your efforts go unnoticed, or under-appreciated, or unrealized until decades later, and it’s good to set aside a day to let them know: We noticed the work you did– and thank them for it because it’s a job well done. Here is my totally affordable thank you to a mom very deserving.
I want to say that whether you knew it or not, I’ve been taking notes from you. Because more than someone who performs countless motherly duties each day, a mother is also simply a model human being for her children. Everything you were doing as an adult, were things I observed and learned from. Watching you navigate through dark times. Noticing your courage and grace when things fell to pieces. Watching you keep going when it would have been easier to give up. Those are all things I will carry with me–forever. I never felt too young to take on the lessons you were learning yourself. If I am ever a mother I will hope to pass those things down to my own kids. But as a singular human being, I will keep them with me and they will guide me long after you’re gone.
Perhaps the best thing a kid can tell their mom is that they’re happy. The last few years have been extremely difficult for me. And I know that as a mom, having to watch your child suffer is even more painful. So often she told me she wished she could go through the experience for me, and save me from the pain. I think most parents would agree. They’d prefer to take on the hardships themselves then have to watch their child go through it. But as much as parents want to protect their children, hide them from the pain and perversions of the world, they also have to trust that they have instilled enough love, value, self-esteem, and wisdom in us so that we may not run from the hardships, but that we may find our way through them, and come out of the other side intact–wiser and stronger, not bitter and broken. I want to tell my mom that even though life has been at difficult, sometimes unbearably difficult, and I’ve wondered how I’d get through, that I would reflect on her life and remember all of the hardships that she had emerged from. The memory would remind me that I could do the same. I’ve always known that at the root of everything, I am loved. Unquestionably. Unconditionally. Consistently. I have always known that. And that knowledge makes a difference to a kid. Whether we’re 3 or 30. I wonder what the world would be like if every child knew that. In times where I didn’t feel like I could keep going for me, I knew that I was loved enough that I would keep going for her, for them. And that guided me. That kept me going.
I know that watching a child in pain is almost unbearable for a parent. I could see it in her eyes when I was sick and incapable of many things last year. It hurt her too. But I also know that there are few greater feelings than a parent watching their child experience joy, find happiness, emerging out of the other side of darkness. I want to tell my mom that I am happy. That I’m OK. And no matter how hard my life gets, I will always be OK. Because look what we’ve already made it through! It used to frighten me, remembering how hard life can get. But now it strengthens me. It’s a choice; I can think of either the rough times and be afraid or remember that we made it out of them and be reassured. I know that being a mother and worrying go hand-in-hand, but I want to tell you not to worry. I am OK and I will always be OK.
I think in the end it doesn’t come down to how many shirts or mugs or magnets you have in your drawer of trinket gifts. Those are things and things are temporary. The love and the lessons you handed down are what is forever. The love you gave through happy times and sad times. The wisdom you exuded when it felt like the world had turned its back on us. Crying when you need to. Laughing when you need to. But never turning bitter, never giving up. All of these learned responses are what you handed down. They are what we will hand down. And the next generation will hand down. And that’s the thread of life being sewn across the world. Nothing temporary about it.
I guess all of this is to say, job well done. Your work will live beyond your life.
Love,
Mary (and Monty)
P.S. Since your other children are out of state, they each wanted to draw you a picture for today. In case you forgot their age judging by the quality of their art, I’ve included them for you.
Health and Happiness and Happy Mothers Day!
This is from your oldest son Doug. He is 35 years old.This is from your son Nick. He is IV league educated.This is from your daughter Amelie. She’s a designer. (Age 32)
Around New Years this year, while I was half dead in a record-setting cold and dreary Colorado, my sister and I were texting. She said that 2013 would be The Year of the Gelpi, as though it were a new hybrid car that ran on water. Among other things, She was going to get pregnant, and I was going to get better; things we’d both been after for a while, but neither one conquered. It’s hard to keep up hope when day after day you feel exquisitely the reality of your circumstance. I often wished I could just take all my sleeping pills, hibernate like a bear, and wake up in the Springtime. All better. But I was also well aware that taking all my sleeping pills meant dying, like for real, like dead dying. Not the day-to-day I feel like I’m dying dying. And I wasn’t ready to call it quits either. I knew there was more to the battle, so I just held on, because that’s all there was to do.
My sister’s situation was a little different. She and her husband decided a few years ago they’d start trying for a baby. Which really meant, they’d just stop trying not to get pregnant. After a year went by with no “success,” my organized, take-control and conquer side of my sister started to monitor every part of the process. Was his stuff OK? Was her stuff OK? Can teeth whitener lessen your chance of pregnancy? Everything checked out OK. We’re just so used to seeing people sneeze and get pregnant that the word “trying” began to take on real meaning. Finally, on her 30th birthday, on a whim she took a pregnancy test, and to her excitement it was positive. I knew that was the best present she could have gotten that year. Yes she was only 4 weeks along but it’s true–she glowed. It was extremely early so they told very few people, even though I remember thinking it was silly. “Let’s tell everyone!” I didn’t understand the need to be so precautionary. I happened to be staying on their couch 2 years ago because, hello, it’s me, that’s what I do. One morning she woke up and said she felt “different.” She had some strange symptoms, and all of her “pregnant” symptoms seemed to have vanished. I told her not to google them because it would only scare her and it’s best to stay calm. Before she could get in to see the doctor, I looked online and cringed as I read many people’s accounts of an early miscarriage–most described her symptoms exactly. I didn’t tell her what I read. I said everybody and every pregnancy is different and we shouldn’t assume anything until she sees the doctor. I prayed for a better outcome, but when he called the house that night, the results weren’t good. The fetus had stopped developing. He was sorry for the news.
I knew it was really hard for her. I don’t know what it feels like to be pregnant, but I know that after you’ve tried and tried and you finally get it, it must be that much harder to lose. It seemed like an unfair teaser. I’ll never forget my sister, brother-in-law, and me standing in their bedroom when she got the news. She hung up and cried a few tears and Keegan and I hugged her. Then she wiped them away and said “I think I want a glass of champagne please.” Keegan was quick to grab a high quality bottle from the kitchen and three glasses. We also ordered sushi, something she’d given up for the pregnancy, and gorged ourselves. Staying true to our morbid sense of humor, we made terrible jokes and tried to have as much fun as we could while we grieved something we couldn’t see.
They would spend the next year and a half meeting with fertility specialists and exploring all their options when it came to having a child. “Who knew it was this hard?” I remember her asking me one day, and admittedly I did not. For one thing, I’m ashamed to admit I watch that show 16 and Pregnant, and those kids make getting knocked up look easy. Not to mention, we’re in the time of everyone and their mother (haha) getting pregnant.
It’s so easy!It really is quite easy. Cheerio!Someone make it stop.
I mean, if Snooki can accidentally make a baby, certainly this healthy, loving married couple with financial stability should have a solid shot at it. It threw us all off that you couldn’t just shoot some tequila and let the magic happen. Could you?
After two doctors, a few rounds of fertility drugs and one procedure, there was still no baby. The next step was going to be very invasive and very expensive. In late Fall, they decided to hit the pause button on the whole charade. No more fertility drugs. A break from the doctors. They were going to let the rest of 2012 finish with as little stress as possible, and pick up where they left off in 2013. The Holiday’s came. We ate gourmet food and drank good wine. 2013 approached and the funny thing is, that night my sister was texting me that this was going to be our year, she didn’t realize that half of the dream had already come true. Inside, a tiny miracle was beginning. And after learning what all is required to take place in order for life to begin, there really is no other way to put it. It is a miracle. I don’t really mind how cheesy it sounds. I also don’t understand how so many people don’t intend to get pregnant but do, because A LOT HAS TO HAPPEN FOR IT TO WORK. But wouldn’t you know it, they got liquored up on Christmas, and well..you know the rest. Apparently the Snooki method works!
Today is my sister’s birthday and I know that it’s a special one. I haven’t given up that my dream will come true too. She’ll have a baby and I’ll get better. But I’m realistic. I know I won’t just wake up one day healed. The key to getting healthy for me is to be at a point where I can manage it effectively. Where I can function and not spend multiple days or weeks in bed. Where I can be proactive and not reactive with treating my symptoms. And where I can remain hopeful, enthused and optimistic even when I feel the worst of it. I have to learn how to find happiness and peace, regardless of my physical state. And I don’t think it’s impossible. It will take dedication and determination and support, but hey, it’s only April. I’m going to be an aunt again in September, so that gives me five months to get in shape. No matter the state of my health, we’re all looking forward to new life in the Fall. We’ve long awaited that little miracle.
So if I die I want that to be the name of my memoir. Isn’t is perfect? It’s funny yet sadly true. A sick girl-turned-woman living in her parents pool house and on their dime. With a dog. Wait am I a girl or a woman? Now I know how Britney Spears felt when she sang that song. In any case, it sounds like a Fairytale to me. I wonder how this one ends.
What I’m really getting at is that life in my parent’s pool house is great and I recommend that all 28 year olds or young adults in general try it. I had my first night in my new place three days ago. Waking up the next morning in my bed, in my own house was basically spectacular. You have to understand it’s been 2.3 years since I’ve been able to wake up under those parameters and having to wait so long and go through what I did has made the moment even sweeter. If felt like finally exhaling after a ridiculously long tunnel. I laid in bed for the next hour with a pure feeling of gratitude, and that’s all I can really do in these instances. Breath, reflect, take it in and give thanks. If you don’t they pass you by, and you find yourself years later realizing how good you had it only in retrospect. I realize how lucky I am to live in a beautiful house, to call it my own, to have a pool, and to be given help and time to heal, when my givers know I can’t really pay it back. I guess that’s what you call love isn’t it. Did I mention Monty loves it too? He’s also deathly afraid of the polaris but not enough to stay out of the pool.
Evil Polaris EVIL POLARIS
Moving into a house when you’re a sickly takes a very long time. Also having this month-long headache still isn’t helping, but who’s counting? I was overeager in the beginning. I wanted to set up every room and unpack every box and start painting walls all on the first day. It took a little overdoing and paying the price later to realize OK, this needs to happen one room at a time. Sometimes one piece of furniture at a time. And mostly one drawer at a time. It’s ridiculous to me how many times I have to learn that lesson. That overdoing it will be costly and painful, and yet I continue to overdo it and pay the price. And the funny thing is, most people I speak to with this illness (like my mom and everyone at the support group) say they do it constantly. You’d think we’d learn after all these years. We’re a bunch of stubborn dum dums!
Anyway I think the most exceptional part about living by yourself is the amount of time you can spend without pants. Like that first day, after I spent the hour of gratitude in bed, I got dressed and began unpacking and organizing and having these grand fantasies in my head like “And in this room I’ll have scrabble tournaments and in this room I’ll serve afternoon tea.” All of which will probably never happen. After a while my pants were really beginning to bother me. Don’t ask why–sometimes it’s noises and sometimes it’s clothing. And then it struck me that I could take my pants off and keep unpacking because THIS WAS MY HOUSE and at my house PANTS ARE NOT REQUIRED. So I took them off and unpacked in my underwear and soaked up the amazing feeling of being able to do what I want in my own place because I make the rules now. Yeah! Other rules include:
No Bill O’Reilly (Not even an option because I’m poor and don’t have cable but still)
Peeing in the Pool Is Actually Allowed. I know you’re going to do it anyway and come on, we use strong chemicals in there.
No guns.
All dogs allowed! In fact, no humans without dogs.
What happens at the pool house stays at the pool house. Like swimming. And scrabble.
So basically, there are no rules. I just want it to be a happy place and an open door to the people I love. I can’t guarantee I’ll be wearing pants, but hey the world has bigger fish to fry. This other cool thing happened while I was touching up paint the first day. I found my ipod from like 5 years ago and thought I’d play songs on random and be entertained from my 5-year-old playlists. The first song that came on was “Let It Be” by The Beatles and I totally stopped what I was doing and belted that song as loud as I could. I’ve heard it so many times before, but suddenly all the words felt like they were being sung just to me and my life. The lyric that really spoke to me was There Will Be An Answer. Because there will be. One day. Maybe not for many many years, maybe not even in this life on earth, but we will see what our lives mean in the grander scheme of things and we will get an answer to our pain and sorrow. I dream about that moment of clarity and revelation all the time. In the meantime, we just have to hang on. Pick up the pieces. Keep going.
Anyway, I played that song about 6 more times really really loudly and sang it really really loudly because that’s another rule: You can sing as loud as you want. Standing in the kitchen. In your underwear. In fact I recommend that’s how you do it. So below is the song Let It Be and I suggest you play it and belt it and let those words remind you that everything is OK. Even though, I know it’s not. My life is a mess. The world is a mess. I watch the news and I see it. I see war and poverty and violence and corruption and it all makes me feel very small. Very powerless. All I am is a sick kid who calls it a success if I take a shower frequently enough. But it reminds me of a quote from Joseph Campbell. He says:
“When we talk about settling the world’s problems, we’re barking up the wrong tree. The world is perfect. It’s a mess. It has always been a mess. We are not going to change it. Our job is to straighten out our own lives.”
It’s not the most romantic theory about life, but it can be reassuring. When I think about what the world has evolved from, (think even from the Civil Rights Movement to present day) it gives me hope that we will continue to grow. It’s all going to be OK. We’re here. We’re awakening. We’ve survived this much, and that’s what we’ll continue to do.
Excuse the drabness of this post, I’m on day 10 of a headache and sometimes it makes the words come out funny. Or boring. But the show must go on! Anyway, I have some news. I’m pregnant. Just kidding. I just keep dreaming that I am. It’s pretty stressful. Because in the dreams I’m like wait, I take waaay too many pills to effectively grow a fetus inside of me. The rest of the dream is spent in panic mode wondering how to be this sick and how also to care for a child. Sick girl fairy tales! So, the real news.
First, I’m back in New Orleans. Monty and I both are. In fact I’m writing from a courtyard at a friend’s apartment in the French Quarter now. It’s weird to think I’ve been gone for nearly nine months. I don’t know if that’s a thing about the South or a thing about Home, but it never truly feels you’ve been away for as long as you have. As soon as the humidity grabs you at Louis Armstrong Airport, you pick up right wherever you left off. Changed or unchanged.
My original plan was to just spend the spring here. New Orleans has about the shittiest climate of any American city, but April and October are magic. It’s perfect. And when you’re here on a day like today, you wonder why anyone would ever ever leave the place. Plenty of artists have depicted the perfection of this city a million ways better than and before me, so I hesitate to try. I can only describe it as magic on days like this. Of course outside those couple of months, is a city ill-equipped for a few weeks of penetrating cold, followed by relentlessly rainy or relentlessly hot or relentlessly both. In those times it’s easy to see why people would leave. And yet few seem to. The roots here are deep, and I love how many love stories there are between person and place. I’ve lived in different cities over the years and have more than one place to call home, but there is reserved a very special spot for New Orleans. It’s like that boyfriend you never quite get over.
The original plan was to come for my friend’s wedding and spend a month reacquainting myself with the city I’ve been missing. But in February my parents made me an offer. They knew how hard it had been for me to give up having my own place two years ago. Beyond not having the money to afford my own place, I don’t really have the health to live on my own either. It’s a chunk out of the ego to come to terms with things like that. My mom was constantly driving over to pick me up and bring me home. It’s long been a difficult truth for me to accept that I can’t live on my own. I have always loved solitude, and basically since moving out of my apartment that March a few years ago, I haven’t been able to really find it. That all changed in February when my parents told me they were willing to let me and Monty move into their pool house. Because that’s what all mature 28 year olds do; they live in their parents pool house. My mom explained that this way, at times when I’m too sick to be on my own, they’ll be on the property to help. And for the rest of the time, I’ll have a place to call all mine.
Since that morning, even the thought of their offer has brought me ease. One of the hardest feelings in the world is, in a word: stuck. Stuck with somebody. With something. In someones house. Stuck in a crap situation. One where you don’t see an out. I have confronted this feeling many times and it can feel crushing. It’s often just the wrong set of eyes to be looking at a situation. Many times when we feel stuck we’re not always seeing the whole picture, or the truth of what we’re surrounded with. But I must admit, the feeling has pervaded over and over and I think it stems from a lack of options and a lack of power on my part. When you don’t have health and you don’t have money, you’re not left with much to offer the world. You’re sort of just relying on the pure heart of people around you, because if I’m honest, for everything they do for me, I have little to offer in return. And that has been the truth of my situation for a few years now. So many times–relying on the goodness of people to do things for me, knowing full well I most likely won’t be able to pay back the favor, or the funds, or a house. It’s been a lesson in humility to say the least. How does that quote go? The true character of a man can be measured by how he treats someone who can do him no good. Something like that. I think of those words all the time. I watch people endlessly help to make sure my needs are met, and all I can do is go to bed at night with an immense sense of gratitude and no certainty that I’ll ever be capable of repaying the favor. I promise myself and the universe, if I’m ever well again and if I ever have money, I will use them both graciously for good.
Tomorrow I’ll start the move into my new place and fantasize about all the wonderful things that may happen to me and my life when I’m in it. Maybe it’s the house where I get better. Where all my wildest dreams come true. Where I find my happy ending. Maybe it’ll just be a nice place to write and lay around and be sick. Go my own pace. Either way, it has a pool, so Monty will be happy, and that will make me happy. I also really enjoy being under water, so there’s that too. I’ve got some projects in mind to begin working on now that I have some space to carry them out in, so at least there will be time and room for all the ideas I’ve been scribbling around in my library of notebooks. Before I go, I’ll leave you with a few photographs of the magic city in Springtime. Everyone needs a pretty day in New Orleans. It does the soul some good.
Health, Happiness, Home.
New Orleans Wedding.Nola Windows. They’re the best.Life In Color.Eating crawfish. Once you know, you know.
What’s up party people? I took my first week vacation away from the blog and I really missed it like it was some kind of boyfriend I took space from. I’d have moments observing something or participating in a conversation and think “Aww, the blog would really love this.” Then I’d try to store things in my brain to access later but most of it drifted away like cotton candy. Anyway, I have some items on the agenda to address beginning with something that might seem a little hard to believe, but believe it baby. I just returned from a bachelorette party in LAS VEGAS and I had the time of my life. Let it be known that I had no intention of attending this party weekend for obvious reasons. I have no money and no health. And yet it happened anyway.
Movie Poster for “Sick Girl at the Window”
I had three roommates throughout my tenure at LSU and we were kind of just our own family. We all studied abroad the same semester so we could meet up in Europe together. We tackled the angst of our early twenties together. When one of us went through a breakup we all felt it in a weird way, as sappy as that sounds. We were tight knit, and those years in college were the best of my life. Inevitably, it became difficult to maintain such closeness after college, as much as we all wanted to think it would never change. Geography, jobs, marriages, and ailing health took their toll on the crew and slowly those days of casual conversations on the porch about nothing became fewer and further between. Admittedly, I am absolutely terrible at maintaining and keeping up friendships in the sense that I rarely answer my phone or fill people in on “What’s new in your life?” I am for sure the worst in our crew. But with those girls it always felt like I could go a long time without seeing them and pick up where we left off. That’s the way to define a best friend isn’t it? Very, little, maintenance.
I remember after getting my full-time job at the gallery after college thinking “Hmm, how does one go about making friends after college?” I was the youngest person at the gallery but aside from age, I felt a real void not having that crew along for the ride. I wasn’t proactive about making friends, especially since most of my weekends were spent in bed recuperating my body anyway. I was nostalgic for the ease in which those three girls and I were friends together.
The first one in our crew was married in 2011 and in true female form, we all screamed and freaked out about it for a while. It really drove home the point that college was over and we were getting older. Last year we got a similar photo text of Tiffany wearing an engagement ring and now the second one of us was “biting the dust.” Once again in true female form, we all screamed and freaked out about it as we begged for details and said all those incredibly female things like Oh my god!! How cute!!! So romantic!! When it came to my attention that Tiffany’s bachelorette party was going to be held in Las Vegas, I felt a pit in my stomach. I’ve become pretty accustomed to missing out on things due to my lack of health and funds. But this one stung more. I have desperately missed my friends over the last two years. Especially the last few months. I feel like I’ve been a third wheel to other couples and their respective social groups for a while now, and I’ve missed the comfort and lack of effort being with your own great friends affords. I was sad to see the party would be in Las Vegas because there was just no way I was going to be able to make it and I resigned myself to the fact that it would be just one more thing I would have to miss.
But a month ago they informed me that whether I wanted to or not, I was coming on this bachelorette party. “We’re buying you your plane ticket and you’re coming,” Emily told me. Of course my ego and pride always protest a little when people volunteer to buy things for me or help me out, because a part of it just feels wrong. I want to be able to pay my own way. I don’t want to be a burden. But they insisted and I once again learned a lesson in gratitude and humility. Sometimes you need to rest that “Oh I couldn’t possibly!” reaction, and just accept with grace the gifts that are offered to you. But there was still another problem; even if they bought my plane ticket, how in the hell would I survive Las Vegas? A month ago I was barely walking! My mom and sister insisted that for my flight out there I use a wheelchair in the airport and then get a wheelchair at our hotel and let my friends take turns wheeling me around. This was once again, going to stir up things in my pride. I don’t want to use a wheelchair, I want to use my own two legs to walk. But I also know that every time I fly, I crash the next day, sometimes for like a week. I know if I walk for more than 10 minutes some days, I pay for it for days at a time. So we were proactive early on. We made a plan.
I would use a wheelchair the day I travelled, and I would also use one at the hotel and try to stay horizontal or sitting as much as possible. I had been reading that some people with CFS have found relief using adderall so I brought some with me to take at night so I could stay awake for dinner and everything after. I began praying constantly, whenever I thought of it, for strength and energy and for things to go smoothly while I was there. I had nightmares of me sleeping the entire trip away in a dark hotel room. But honestly, I thought, even if I don’t make it out after, it would be worth it me to go there and have dinner with my friends. It had just been so long since I had done something purely recreational like this. I knew my soul needed it. So we prepared as much as we could and I left the rest up to the Gods of partying and drunken debauchery.
As I stood in the crowded lobby of Caesars Palace on Friday night, over stimulated by the sounds and sights of Las Vegas, I saw out of the corner of my eye two girls pushing a wheelchair with huge smiles on their faces, headed in my direction. My heart wanted to explode. I was so unbelievably excited to be with them again, and to know that just like in the college, they were in my corner again and I was in theres. They would push me the entire weekend, even when I would say “Nah why don’t I just walk..” My friend Emily would put her foot down and insist I “wheel it.” I quickly got a small glimpse into the life of someone who is physically or mentally disabled because people stared at me in that chair. I thought of those who are physically handicapped or disfigured and how many of those stares they have to deal with on a daily basis. I wonder if they get used to it or if after years it still gets to them.
Besides being with friends again, one of the best parts of going on that trip was feeling like a WOMAN again. I wore dresses and high heels. I had my nails painted red, did my hair like celebrities and smelled sexy, because I could. I’ve been sick and wearing the respective sick costume so long, I needed to remind myself that if I really wanted or needed to, I could still take the time and emerge out of a hotel room with my heels clicking on the glossy floor, and make a man look twice. It’s just plain fun to play dress up. And even at age 28, I don’t feel any different than when I was five and I would clumsily walk around our kitchen in my moms high heels 6 sizes too big. All of life just feels like theatre to me now. Two years ago I was wearing the corporate girls costume in pinstriped skirts and last year I wore a sick girls costume and this weekend I was all dolled up at a club and no one knew the difference. I think I really needed to give my mind a rest from thinking about being sick all the time. It can be extremely consuming and I am always cautious not to let my “story” dictate who I am. It’s always been a fine line. But this weekend, for the most part, I was just Mary. A girl with her friends celebrating the upcoming marriage of one. I danced my heart out to terrible music in the VIP section at clubs. I drank gin and tonic and flirted with boys. I even kissed one, just to make sure I still knew how. Turns out I do. I had the time of my life and I think I needed it more than ever. How am I feeling now? Well, kind of crummy. It’s catching up to me. But at least this time, I’m paying for a great time I had, and it was well worth the price.
We Are Women Hear Us Roar
Thank you to my friends for insisting I go and helping pay the way. I needed it. I’ll pay you back when I’m a millionaire one day.
Good News! I woke up yesterday totally healed. I have loads of energy and no pain at all. I threw out all my pills and I’ve signed up for a marathon and begin full-time work next week! Haha. Just kidding. But that would be cool wouldn’t it? I’d write my final blog post: “Well, I’m all better now. Peace suckers!!!!”
Last week I put out a call to the master of the Universe with a very modern hope that he reads blogs, and specifically mine. Well it appears, he does. Or he did. After a really tough couple of weeks with bone crushing fatigue and other relentless symptoms, I woke up on Monday…lighter. My weakness seemed to have lifted overnight and I felt energy that I hadn’t felt in a long time. It was bizarre. I didn’t think too hard about it fearing if I did it would somehow leave. On good days you just count your blessings and then you get a few things done that have gone undone andoverduewhile you were busy sleeping, living under a rock. Or covers. You get it.
I was surprised and deeply moved when I looked at the blog on Monday to see so many people had rallied in my corner, sending positive thoughts and prayers. Many of them perfect strangers. My mom had also written an email to family and friends asking for some divine help, as nothing on “this side” was really working. I was again taken back when I signed onto Facebook to see people gathering troops in prayer groups and the like to pray for me…a sick girl who asked for a little relief. My cousin Cindy asked her “prayer warriors” to come together and see if they couldn’t “lighten her load.” On Monday that is exactly what it felt like physically; like my load had been lightened. That heaviness I had been carrying around, gone. Once again, perfect strangers wrote to say they had been praying for me, many of them offering beautiful and supportive encouragement, assuring me I would get through this. People emailed my mom back all with truly inspiring and beautiful things to say, some as succinct as “Hang on, you’ll get through it.” As I read I cried, overcome by gratitude. But more importantly I believed what people said. I was assured I’d see the other side. With each message I felt a swelling warmth in my chest. Suddenly it struck me that the miracle was not that I woke up basically symptom free on Monday. It was how quickly humanity had come together-friends, family and strangers–with powerful intentions, love, support, and healing thoughts for a girl who some had never even met. It reminded me that we are in this together. We are not each one life, but an interconnected string of lives, and that when we assemble for good cause we are capable of incredible things. When one of us is pain, we all feel it somehow. When one of us overcomes, we all win. And maybe most importantly, when one of us strengthens and expands her consciousness, all the worlds consciousness is raised. We all evolve.
I laugh because in my blog I asked God for one day. Just one day of relief. Well, I was given two. By Tuesday night I felt the heaviness start to come back. My muscles weakened and my familiar sick disposition descended on me. I know that on the outside it seems unfair. Why give her two days? Why not give her the rest of her life? And if God were a genie and life were a two-hour movie, that’s probably how it would work. But we are living in the midst of eternity here–our lifetimes in that context are a flash, but each one brings an invaluable meaning to the whole. The lessons we learn often take a whole lifetime to get perfect, but each contributes a small piece to the universal puzzle. Anyway, in my blog I sadly theorized that maybe I was forgotten about. My symtom-free two days reminded me ever so gently that no, I was not forgotten. This is just the work I have to do right now. A lot of it from bed. Seemingly on the outskirts of the high-paced world, the 9-5 jobs, security or fortune or fame. But just because you live a lot of your life in solitude does not mean you’re alone. Just because you don’t wear fancy dresses and attend important events doesn’t make your life’s work or contribution any less important. We all have very individual paths and under closer examination the design reveals itself as perfect. When I consider that my passion is and has always been writing, something that was absolutely untouched by the illness except that it gave me my platform to begin, there’s no question that there is a higher intelligence who’s job isn’t easy either. I doubt the creator likes to see his masterpieces suffer, but that’s the difference between us and him; he can see the finish line and we can’t.
To keep living takes a massive amount of trust on our part, especially in the midst of pain and hardship. But it’s that solid trust inside me that tells me to keep going. That’s what the voice is grounded in; trust in the grand design. That this is the work I have to do right now in order to become whole, to evolve, and to find inner peace. I often fantasize about a life that I don’t have. One where I wear pretty dresses and attend charity dinners and I charm people with gracefully told jokes and stories. “Tell us another one Mary! You’re the greatest story-teller ever!” they all yell.
That Mary Is One Hell of a Story Teller!!
Haha. I have no idea why that’s what I fantasize about, but it is. And maybe one day I will dress up and I will do those things at a party–but for now I need to be where I am and remember it won’t always be this way. Remind myself that I still have access to life’s greatest treasures whether I’m in my grandpa’s pajamas or in a dress at a fancy party: Love, passion, friendship, community, creativity and hope–they’re all still there. I am still young relatively and I’m still figuring it all out. I don’t know exactly what I believe in, I just know that after last week, I believe.
And I hope you do too, because you were very much a part of it.
I have basically been crashed since the day after Christmas. Even before Christmas, my operational value was at maybe 40%. It has steadily gone down. My joints have become cloudier, my muscles weaker and heavier, noise louder than ever, and ordinary light offensively bright. Simply stated, moving has become difficult again, and this is the hardest symptom of all for me to handle. It’s suffocating. I’d prefer pain honestly. My legs are useless. Sometimes I find myself reaching for things across the bed without so much as flinching my legs because it takes an unwarranted amount of energy to move them. I can’t say what is happening to me. Or what has happened to me. I know that every night I pray really really hard that the next day will be better. When I wake up the next morning, and things are the same or worse, I keep going. I take my daily pill cocktail, wait for relief, stare out of windows, and contemplate what a strange and sedentary existence I have. What else can I do but go on? It’s hard. It hurts. When I think about how long it’s been, I fear how long it could last. But I’m not giving up now. I can see the appeal, but I’m not gonna do it.
Chronic Fatigue Syndrome doesn’t kill you, directly. It’s rate of mortality comes from a scary little thing called suicide, and having suffered with this since age 9, it’s easy for me to see why that option can feel like it’s all you’ve got. It doesn’t feel like much of a life, laying in bed each day. Only hearing the sounds of life but not actually participating in them. It’s like smelling the aroma of baking bread and never actually getting to eat any. You watch entire seasons change, babies turn into toddlers, this Christmas into next Christmas, and you expected things to be different by now. You’d fantasized a certain life for yourself by the time you got to 25. And when that didn’t happen you said 26. And then 27. And now 28. I’m starting to forget the numbers. They’ve never changed anything before.
It’s really hard to understand God during these times. I grew up Catholic and have always had my relationship with God- but it’s very personal. I even imagine him when I speak to him, in a very specific location, as if a bulleted address on Google Maps. I think of him now, through darker and unhappy times and I think either he trusts me too much, or he forgot about me altogether. But would the master of the Universe forget about someone? So much goes into making a person and a life. I know that I am an incredibly tiny tiny piece of the whole, but still, a piece. And while in the context of eternity and potentially multiple universes we can feel incredibly small, I somehow don’t doubt for a second that my life matters, and so does everyone’s who is alive. I don’t say that with a lot of pride either. I say it because there is something solid and untouchable in me, something unstirred by discouragement, failure, despair, loneliness and tears. It says Keep Going, and so I do. But the truth is I don’t know what for and I don’t even know in what direction. Certainly I am lost. But it’s sort of for my own bitter curiosity that I won’t give up. I want to see what’s at the finish line waiting. I need to know this is not all for nothing.
I must be honest, I think a lot about how stupid I think my life is. I know that seems irreverent at best, but sometimes you just have to laugh about it. Today I was too fatigued to brush my teeth. My God! It’s so stupid! It’s so stupid it’s funny. You should see what I look like these days. Somewhere between Jim Carrey when he visits the Nut House in Ace Ventura wearing brown boots and a pink tutu, and an old senile man in pajamas on his front porch with a cigarette and a shot-gun. Sometimes I stare at myself in the mirror, not quite recognizing what I’ve morphed into. The steroids have puffed my face, my skin is pale and there are dark circles I never had until now. But more than that, it’s like the lights are out. What’s that phrase? A shell of who I used to be? Something like that. I feel like a caged animal and I fear that’s what I’m starting to look like too.
Thanks for the clothes Grandpa!
Tonight I cried I guess because it all catches up to me once and a while and feels too heavy to keep in. My mom says we’re all due for a little meltdown now and then. I cried but what I wanted to do was scream, because I am physically nauseous from how sick I’ve been. How relentless it’s been. Day after day, hour after hour. When the weakness makes just standing up a chore that takes energy, my stomach turns. I’m tired of being sick and I’m tired of taking pills. I want to scream but I don’t have the energy for it, so I cry. By default.
When I cry I blow my nose really loud, hoping that it’ll wake God up from his sleep. I hear a rustling and when I look up, it’s Monty standing there, wagging his tail at me. He’d snuck in when my head was buried in my hands. Truthfully, I was happy to see him. It then occurred to me that Dog is just God spelled backwards…so maybe he is listening after all. Maybe Monty is God! I don’t know. And that’s the hardest part about moments and times like these. We don’t see how they fit into the grand design of our lives yet. All we see is what’s happening now. For now, there’s pain and suffering, and if God reads blogs, then I guess this is me asking him to take it a little easy. Maybe just for a day. Either way, I will still go to sleep with hope that tomorrow might be better. And if it isn’t, then the next day, or the next day or the next. Keep going something tells me, and since I have nothing else to do, I guess I’ll do that.
The sound a rotary phone makes
When you hang up the receiver.
The smell of tires
And how you know before you walk in
the door of the auto shop
that the computer will be old,
and the colors will be red and black.
The sound of ice in a glass
And a something liquid gold
pouring slowly in.
When Monty’s Tail Wags While He’s Sleeping.
Riding in a cab
In New York City,
going anywhere.
The urban slideshow
through a square cracked window
slows down the fast city.
and the driver mumbling
in a quiet language an American girl
who’s pretty
will never need to know.
The way Gwyneth Paltrow smokes cigarettes in The Talented Mr. Ripley.
.
The second of stillness
When you drive under a bridge in the rain.
New showering products.
A woman tying a man’s tie.
The crinkling of a newspaper
When a man eats his breakfast
With one leg crossed over the other.
Being a woman
Wearing a dress
Smelling romantic
and the clicking of heels
on the old wooden floor
toward whoever spent the time waiting.
A fresh piece of chalk
on school chalkboards.
And the slowness and fragility
of that 90 year old librarian
Who stamps the due date in my book
with her veiny tissue hands.
That feeling you get
When you kiss someone new.
Like everything is different
Though everything’s the same.
I’ve finally reemerged out of my latest crash. I’m kind of tired of dedicating words to what being sick is like, so instead I’ll do it with GIF animations. Here’s how it went.
Monday: I tried to get out of bed, but it went something like this.
By Tuesday I was still lifeless and sick, so my mom brought food to me in bed, which went something like this:
By Wednesday I’m like this is crap! I’m going outside to play! Which went like this:
So back to bed I went, like this
Then I woke up like 20 hours later like this:
And then someone with enthusiasm calls and says “Hows it going Mary?!?!” and I respond “Great!!!”
Then after a long day of exhaustion, I try to go to sleep, which goes something like this:
Then alas I get to bed, and when I wake up, my body feels like it’s done this to itself all night…
Being awake feels crappy so I go back to bed, like BYE WORLD!!!
Then I wake up to Bill O’Reilly playing from the living room…
Meanwhile Monty is bored to death with his owner so he decides to go out in the world on his own…
Then finally I wake up with enough energy to get out of bed and be a functional human being!
FibroM.E.-Awesome 