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.
Health, Happiness, Merci.
*P.S. On September 26th, this blog turned two years old. Yaaay.
FibroM.E.-Awesome 
Yep, I too have been given the fibro diagnosis… But I read this awesome book, “When Sleeping Beauty Wakes Up”, written by Patt Lind-Kyle. After so many years of feeling lifeless, I found out that people could do more than survive fibro and CFS. I decided that I wanted to be part of that party! I kept researching and trying alternative therapies. I am extremely happy to report that essential oils (I am now an aromatherapist) and gluten-free foods have me out of the cave! The most common word people use to describe me is ‘glowing’. How cool is that!
I am out of bed and active in my community. I am starting a business, (website in progress) and hope to help others who are saddled with the fragile life chronic disease hands us. And not to accept it as our only options. Sure I have down days (physically and emotionally), but if I keep my stress level down, I find that my recovery time is so much shorter than in past years.
Thank you for being so candid about how you feel, and sharing it with us. I love your blog! (btw, I have a new word in my vocab; my 14 year old Care Bear is golden retriever/German Shephard mix, and I refer to her as ‘adogable’ instead of adorable.)
Hugs,
Gale
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Sometimes I wonder if you’re just too famous to read all our comments. I’m glad to know you do. I LOVE your blog and I’m glad you love it too – that means we all get to enjoy it forever. :) And reading this pushed my travel bug over the edge and I’m convinced I need to find a way to go somewhere – but more importantly I’m convinced I CAN go somewhere. :)
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I googled something about fibromyalgia, was FINALLY diagnosed 10-14-13 after about 2 1/2 yrs of trying to get a dr to listen to me tel them something isnt right, and this kick ass blog came up. I know its a struggle, but thank you from the bottom of my heart for creating this… I’m still somewhat in disbelief being diagnosed , I guess, even tho I knew something was wrong with all the pain n such, n I’m willing to bet that life is gonna be kinda like a rollercoaster, but you give me light at the end of the road. Again, thank you!!
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“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. “.
Thank you.
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This post made me tear up. I have been struggling with CFS hardcore for the past 2ish years and generally struggling for almost 5. Your blog always helps me stay positive and strong. Being sick, socially isolated, and stuck back at my parents house with an unfinished college degree and no job is tough but there’s been some really incredible things in the situation too. My parents are amazing and they are my best friends. I’ve read an incredible amount of books and I started a blog myself talking about art. Thank you. Thank you. Sometimes it’s hard to remember that it isn’t forever. :)
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Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam
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Just need to share a song that gets me through some of my very hardest and darkest moments…. https://www.youtube.com/watch?v=fz7sXU1Scmw
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I con’t tell you how important you are. You are putting words out in the world not just for you but for so many others that do not have the ability to write it so eloquently. You describe in ways that others may not be able to describe it themselves. So i say thank you! Continue to live this miraculous and inspirational life you are living. It is not easy I know but you are doing it brilliantly!!
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Last year during my HSC (which is like the Australian equivalent of your LSATS I guess?) I was feeling exactly like this. I was just (painfully) walking around school and from class to class feeling so alone because people who are well will never get it. It’s started to fade a bit now, but I have a new mantra which I’ve written on my mirror:
‘No matter how you feel: GET UP, DRESS UP, SHOW UP’
And whenever I follow that advice I have a great time. I will not let my illness define me or beat me because I know it will get worse with age. You’re nearly 30 right? THIS IS OUR TIME! :)
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i don’t keep up with the blog regularly but i’m so glad i read this post…you are a rockstar mar…you are such an inspiration to me to keep going…love you sister moon
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I’m going to send a link to this to a tolerant but often frustrated friend who has put up with my snippy, “no I don’t want to go out for Mexican food and quit asking me if I want to go for a walk because this year has been awful mentally and physically and suggesting a walk feels cruel because I truly can’t and you know it” self … because I’m too tired and grumpy to write it myself and you said it so well. And, thanks for making me laugh somehow even when you write serious, sad or sappy stuff.
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Mary C., you’ve done it again!! How is that you manage to write so beautifully about things that are anything but beautiful (illness, loneliness, pain and separation)? I look forward to every new blog! I can almost hear your Dad say from heaven, “That’s my Mary C.!”. And like your Mom, you find that tiny bit of light to grab onto, even in the darkest episodes of life! Each time you do that, you help the rest of us know it’s possible in our lives too. You manage to touch more lives in positive ways from your places of solitude than many of us EVER touch, even when we’re out in the world! YOU ARE NEVER TRULY ALONE!! (I hope that doesn’t sound creepy ;) ) You always have a place in the hearts of us all! We love you (& Monty’s awfully darn cute too!)!!
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Oh, and a quick plug if I may? http://www.foodthingsandthis.weebly.com
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As the mom of a 24 year old daughter with Fibro, Systemic Lupus, and a host of other issues, I connect to your blog perhaps in a wholly different way, but connect I do. Love your spirit, and insight. I also share your particularly pertinent posts with others in her life that they may understand a bit better.
Also, something you said above reminds me of a favorite quote of both of my daughters that I thought you might like…
The wound is the place where the Light enters you. – Rumi
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Thankyou for starting such a wonderful community!! I really love coming to your page and hearing how you are going, and everyone else in the comments! It is a wonderful reminder to be greatful for the good days, and that we’re not alone on the bad ones :) After spending so many years struggling to make people understand, it is just wonderful to know there are a few places like this (yay for the internet! lol) where I know I can be understood, and where I don’t have to explain. So, thankyou!!
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Well, Mary, you did it again. You touched my heart. I look forward to your posts! Yes, it is comforting, encouraging and heartwarming to realize there is a whole world of people that are like you; in pain, tired, frustrated that you can’t be “normal” for just one day, or better yet, one week (or month, etc.). It really helps! Thank you for writing your blog! Keep on keeping on!
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No one but another fibro person can understand how some days just finding the energy to breathe is a challenge. My wonderful hubby of almost 30 years still does not get it. But I have given up trying to please and appease everyone. The only person I will climb out of bed for is my daughter and her children. I am not going to miss any chance to be with them no matter how I feel. Being older and wiser, I have no more guilt (ok, that’s a lie….I still have a tiny bit of guilt) about not seeing or speaking to my friends as often as they would like. I work more than full-time, at night, so on top of fibro tiredness, I have work related tiredness. The fact that I still can on a rare occasion get to see a friend, is an accomplishment in my book.
I wish fibro had a visible color-coded symptom indicator. Like when I am beyond exhausted if my skin took on a blackish tone, or when I had major brain fog my forehead turned yellow and pain pressure points would flash purple. Just so people could see how awful I feel most of the time and instead of being angry or disappointed with me, they would see how well I do function with all that is going on in my body! I know everyone out there must feel the same way. We look “normal” but feel like we were hit by a semi most of the time.
If you don’t make Paris on your 30th, don’t give up. Try for 31, or 40 or 55. Just never give up the dream. Some days it’s all we have to keep us going…our dreams…our hope that someday we will have more energy and less pain…it could happen. But in the meantime, find little ways to make each day a “Paris” day. Buy French music to listen to, watch French films on DVD, eat French fries and French toast. Buy a big poster of the Eiffel Tower and put it where you see it from your bed.
We all can do stuff like this to help us “live” the dream now, in whatever condition we are in…just takes some imagination (and a credit card and a trip to Amazon.com). There is still life in us and we need to tap into whatever spark is left. Depression is just a breath away for folks like us so we need to do everything we can to keep it away. Like reading your blog…it is great to connect even if you never post a reply…at least you know you aren’t the only one going thru this and you are NOT alone. There are millions of us. Thank you Mary from one of the millions!
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Two years old? Is that all?! I feel like I’ve been reading this blog forever. Suffice to say, I feel you. Thanks go to you in return for being one of the few places to go where fibro is tackled head on, with humour and sarcasm. A girl after my own heart…
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You have described my life to the exact point of no one understanding. They say they cant understand what I’m going through cause I don’t look sick…I should be able to get up and clean, cook, etc… I have tried over and over to explain but to no avail!!!!!
I’m really glad to see that there are people out there with the same issues that I have.
I really enjoy reading the blog and the responses from everyone!!!
Thanks so much!
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