Unwell, Unafraid

I know this feeling all too well.

A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well.  All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it. It’s the best kind of fitting in. Someone asking you how you are is nothing more than a pleasantry and that’s how I like it. No reason to sugarcoat or think twice about the answer. I’ve yet to figure out a response that feels right, so mostly I lie, and I’m a bad liar. I cave easy. But this is one I get away with. I suppose it’s why anyone lies; it’s just easier. It feels good to give an answer that people want to hear. It keeps a hard reality in the blurry background, and that’s how I like that, too.

On day 4 of my crash, I’m laying on my moms couch in the office. My mom comes in and asks if I am still as weak as I’ve been. I quickly reply ‘no’ and that I’m feeling at least a small bit better. It’s a lie. I can tell because saying it out loud causes some kind of turning in my gut; where the truth would’ve provided solace maybe. I feel just as bad if not worse than yesterday. I’m short of breath for no reason and I’m weak down to my finger tips–peeling my banana earlier was way harder than it should have been. I’m dizzy every time I move. I get waves of nausea that are as close to puking without actually puking as it gets. But I lied. I said I was better. I’m left wondering why I did that. I’ve got some ideas.

Not having to think for very long, the answer came. It’s so easy: I’m afraid. I’m afraid that it could mean what it’s meant before. That it won’t go away. That I could be stuck this way the rest of my life. That I’ll never be able to fulfill all the dreams I have or achieve my notebook full of plans and ideas. I’ve had a one day crash turn into a week turn into 6 months. I’ve watched my life turn inside out and be emptied of the good parts. So often it feels like I’m watching it all happen from the outside. At 26 it felt as though the narrative of my life shifted from 1st person to 3rd, and that’s been hard to get used to. I said goodbye to things I wasn’t ready to. The illness took me over and then swallowed everything in my vicinity too. It was hard. It is hard. Some days, some weeks, some months better than others. It’s just been so “good” the last few months. It seems every time I crash I have to confront everything all over again. I think it will be that way until I fully accept and surrender to what my life might be. I already know the challenges I face, I also know it could be a lot worse. That in the end I have everything I really need. And while my life could be bad like I fear sometimes, it could also be good. great even. And the reason I need to let go of that fear is because what my life can be is up to me. Sick or healthy.

I have to remind myself often that a lot of this is out of my hands, which I have to be very careful with. That kind of acknowledgment requires perspective and reflection and it should never be an excuse. This is surrender, it is not giving up. They are two different animals and mixing them up can heavy the suffering. It doesn’t mean you call it quits and accept that life is shit. I’ve had to draw a lot lines between surrender and giving up and so often I’ve gotten it wrong. I’m ready to start getting it right. Apart from what we’re doing in our lives, the way in which we examine them makes all the difference in its joy or sadness. You’ll know whether you’re surrendering or giving up the same way you’ll know whether you’re telling the truth or not: one feels like relief, the other like defeat. One has roots in reality, the other in fear of it.

I have to stay aware. I have to remain conscious about the choices I am still free to make, and remember that I do still play a part in all this. Of course there are many parts of my life I would change were I able. But how I go about living the rest of my days is in fact up to me. Actually, it is only up to me. Will I choose to react? Will I choose to be a victim? Will I make excuses for myself to justify poor decisions? All of these are possible. And every day I wake up I can think of 100 reasons to choose a darker path. To stew in my own sorrow, to stop trying, to be defeated by something difficult, as if no one else alive is faced with their own challenges. Some that make mine look like a splinter in my pinky. The opportunity to go another route will always be there. You’ll get in trouble thinking that if you choose one good thing, you won’t be tempted by so many other bad ones. You will be. Everyone is, in their own way. Every person has demons to manage and a truth that isn’t easy to sit with in silence, but truthfully this is half of being alive. It’s why you’re a human being and not a turtle in the mud or an insect reacting to stimuli; flying toward whatever is bright.

The funny thing is, what most humans want is control. We like to think we make our own lives and everything is up to us. I disagree with that notion on a few levels and agree with it on others. I know for certain we play a huge hand in our own happiness. But when we get dealt things we didn’t plan for or wouldn’t have picked we feel like we’ve been royally screwed. Robbed. So often I fail to realize it’s not about choosing my hand but how I play the one I got. That has been and always will be up to us.We get to choose how we talk to people and who we surround ourselves with and what we’re going to give our precious energy to each day. What mark will we leave? What will we contribute to the world we’ve been given? Scientists and theologians continue to debate whether we chose to come here or not. Regardless of whether we’re the product of an all-knowing creator or consciousness or the random assimilation of atoms and space, we know for certain our time here is temporary. Loving or hating our life won’t change whether it ends or not. It will end. We don’t get to stay forever. We don’t get a say so in some of the things that were done to us. Every adult has a childhood. Every child had parts that weren’t fair or right. At one time or another, we’ll question every truth we’ve held onto and every drop of optimism we’ve carried. At times we’ll have to fight for our purpose, even if it’s just to get out of bed and make yourself eggs. (That was mine today. Yeah!) We get to choose what we do next with what we have. Will I find a reason to be happy or a reason to be mad? Because I will find both. I can always find both.

I have plenty of reasons to be both. But the last thing I need is to be afraid of what is real. Even if what is real is scary. Life is scary stuff dude. Have you been outside lately?! Even in small doses. Sometimes I have to chop it up smaller and smaller and smaller until it’s digestible enough for me to get out of bed and face the world and find my path and keep going. Doesn’t matter that I know where, so long as it’s forward. The truth moves us forward where lies keep us in the past. Surrender smooths the road for us to navigate with eyes anew, where giving up halts us, traps us in static pause.

I have no idea why even small truths are important, maybe for the reason that even small lies can cause damage. My small truth is that today is the 5th day in a row I feel terrible, and I live in fear that I won’t emerge from it. That the illness has the steering wheel and I’m passenger side. I fear what all the pills I take is doing to my insides. I fear I’ll live with my parents forever. (Sometimes I think they fear it too :) And all of these things are O.K. There’s no need for me to sugarcoat it, lie about it, or fall dramatically somber in acknowledging it. In fact admitting the fear almost instantaneously makes it smaller. Takes away a little of its power.  Today I’m unwell, but I’m also unafraid. I expect to get better. Being quiet and afraid won’t rid me of what I fear. So perhaps better to be loud and honest. Life will go on regardless. What I want to be assured of, and what I imagine so many of us want to be assured of, is that we tried. That we didn’t take being alive lightly. I know I don’t live all of my days like that, and that’s a change I’m working on. Imagine if we could all live in our truth, whatever it is, and embrace each day as though we’d never lost. What might our world look like then? Our lives? Our Facebook Statuses?!

This has all stemmed from one small lie I told one afternoon that followed me around all night and morning. Funny that me confronting a grand truth began with a dumb little lie. But something about it makes me feel in my bones that these things matter. Sometimes I see and feel in myself and others that we’re starving for things that matter but are constantly being fed things that don’t. I don’t know how to begin a shift, but I know to make changes on a big scale, we must first begin with ourselves and live honestly. It’s our job to dig deep within, listen to our intuition, and be human for one another, not at one another.

I’m still tying all of my thoughts together. Still looking for answers and often coming up short. Sometimes I can feel the strings of my reality ever so slowly weaving together and making something whole from many mismatched parts. That’s what so many days feel like. Raking through the muck and finding the good parts. Then making sense out of the bad stuff left behind. The fear and pain and anger, there’s a lot of answers in them.

I’m sharing this beginning with anyone reading. (All six of you)  Maybe somehow, it’s something we all work towards together. And whether this is just a stepping stone or a small premise for something bigger, it doesn’t matter. This can be the start of something new, even if it’s very very small. And I can look back at this oddly cold day in January, where besides the frozen leaves outside, it would have been business as usual. But it wasn’t. It isn’t. Where a small lie would have left me afraid, a tiny truth burrowed out instead. And in my repetitive life, maybe this is the start of something new.

Health, Happiness, and I Ain’t Scurred

I ain't scurred
Just Kidding I’m Still Scared
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16 thoughts on “Unwell, Unafraid

  1. Thank you for sharing this. I have an inkling of how challenging chronic can be, from my partner and her chronic cancer and the way it has displaced her from so much of what she knew before. And I have some very good friends diagnosed with FM who talk about similar feelings. I wish for you many better days and less crash days, and for the resolve and peace needed on the harder days.

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  2. So glad I found a link to this on FB. You have a wonderful ability to express yourself, and your honesty and strength are admirable. I have fibro so your words resonate and motivate me to seek my own truth and path. I wish for you patience, courage, faith, compassion for your parents and for yourself, and finally peace of heart. I thank God for the good days/moments…however limited, they always come.

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  3. Like a previous poster, I follow your blog and read every post, I just don’t usually comment. I have found myself in a crash right now, just like yourself, and you’d think that having dealt with this same pattern of pushing myself too much and dealing with the subsequent crash would have taught me to slow down but I am still learning. Stubbornly I might add as I’m sure you are too well aware. Your posts are always enlightening and make me feel less alone in this isolated world I live in. I always look forward to them. Hope you’re having a better day today.

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  4. Thank you for your beautiful writing and thank you for making me feel less alone in a world where crashes like yours happen. I praise you for the fact that, although you’re in a major crash, you still find some energy from some hidden place to write a piece like this! You are loved by people all over the world <3

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  5. Nah, I read your writing all of the time, but just don’t comment, so you can add me on to your “six” people!!! My first thought about your “lie” you told your mom is because I think we are always in that child role with our parents to some extent and you want your mom to also have hope and not worry her. Keep struggling through this crap and I do believe for you it WILL get better. I am happy that you do have family members around you that for the most part understand and support you. Well, and then there’s that undying love and support from Monty! Have a better day today!

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  6. Read your about page also, you seem quite a woman, a strong woman. I know it sucks living with a chronic disease, specially the one you have. I have severe pancreatitis, so 50% of my pancreas doesn´t work, and it´s the only organ that can not be transplanted. Spend 18 days in ICU, almost died,yet again it wasn´t the first time that I almost died. Made peace with death, you feel crappy today for the 4 day in a row, I feel crappy today for the 3 day. Stomach hurts like hell and I´m constantly going to the toilet, hope I don´t die in the bathroom though. What you said about being in control, we can control so much of our life´s but the rest you said it, it´s how you deal with the unexpected that comes towards you that will make you either come on top or not, or just handle it better. I had fun in the hospital, even knowing that I might not come out of there a alive. Doctor´s told me there was that chance and if I did well anemmia will ensue and stomach problems. Fucking assholes where right about the stomach problems. Anyways, you seem fun and strong and those are some damn good qualities.

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      1. My pleasusure, I read from poets to very literary type of people to…..interesting people, interesting for me that is and you always can get an idea here and there by reading other blogs. I´m working like a slave right now and can only get into a computer once in a while so hopefully tomorrow I´m done with this shit of painting job. And get back to doing what I truly love, writing and reading you all guys.

        Again,my pleasure reading your post´s and tomorrow hopefully I can read more of your posts and the rest of the people. Love to read them. I always said that try to learn everything although probably at the end of the day you´ll end up using one quarter of what you´ve learned. That´s my cool little motto.

        Stay Frosty, Stay in touch.

        Read ya.

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  7. Sorry to hear you are feeling crappy again. I hope it’s short lived and you feel more normal soon :)

    I had a reminder of my own limitations this weekend, and how hard they are for others to see and understand, especially when most of the time I cope pretty well. We went to visit family for the weekend (who live about 4.5 hours drive away) after an already too long couple of days. By the time we got there I was so overtired I just sat down and cried. Mum had to come and remind me that everyone wasn’t deliberately pushing me too hard, they just struggled to remember that I was sick because I look fine on the outside. Thankfully lunch was running even more late than usual so I got to go have a 2hour sleep, which let me feel at least human enough to sit and listen to everyone else talk. Thank goodness I’ve now got a few quiet days to recover :)

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  8. Wow…. just…wow. Ypu’ve rendered me a bit speechless, which is not an easy task. I’m glad I have insomnia and didn’t miss this post. Pretty intense. I hope you get to make yourself some eggs soon :-)

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  9. Don’t be scurred, Mary. I have found peace lately by reminding myself that in any given situation, I am exactly where I’m meant to be. I wish you well on your journey. Sending gentle hugs…..

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