moving – FibroM.E.-Awesome

Colorado, Crashed, Covid, Catastrophe

Published on May 12, 2020 by Mary Gelpi1 Comment

It’s hard to know where to start.

I kept thinking things would get better. I would get better, then I’d write. I’d take a shower first. I’d wait until this migraine subsided. I’d pack a box. I’d unpack a box. And then and then and then. And now…

Now, things are worse than ever! So much has happened since I wrote here last. Now I’m sitting in our living room in Colorado, soaking my infected toe in an Epsom salt bath. I’m icing my head because I’m still stuck in the migraine cycle. I’ve only eaten an apple with peanut butter for dinner because my stomach ulcer went from mild to angry in the last month and I don’t want to upset it. I am weak, heavy, and ridiculously short of breath. We having fun yet?!

I knew the move would be tough. Moving is hard, regardless. Moving when you’re sick is really hard. Moving followed by a severe crash and a world-wide, viral pandemic? Well, that’s just good ol’ fashioned fun.

Remember when we all thought 2019 was such a crap year? HAHAHA.

Matt and I packed up my moms Hyundai in March and drove from Louisiana to Colorado with Monty in the backseat and lots of road trip food. We took three days getting here and it was a pretty fun voyage, except for that part when we almost died on Red Mountain Pass because it’s an insane pass. Four days after arriving, the world turned upside down.

1-3 — That Red Arrow is the Part Where You DIE

But things are such a mess on top of that, I barely even think of the damn Covid! No, that’s a total lie. I worry like hell about it, it’s just that the list of worries is extremely long right now.

For starters, I am a walking catastrophe, it’s almost hilarious. Except that it’s pitiful. In fact I’m more of a sedentary disaster, a truly rare breed of human catastrophe usually only found in the state of Florida. Kidding. You get the idea, I’m about as useful as a trashcan lit on fire right now. A waste of oxygen! And there’s already so little of it in Colorado, as my Uncle Tom says, ‘It just don’t be right.’

On top of that there’s a lot of stress and exhaustion in trying to find doctors who will continue treating me, (so far a disaster), praying my toe doesn’t fall off (another day, another story), praying Monty’s toe doesn’t fall off (another day) regaining some functionality (I Just. Want. To SHOWER.) and finding a way to adjust to all this change without blowing a gasket. The move. The covid. The lack of rain in Colorado (Boohoo) I’m trying hard to trust it will all work out. I know so many people are trying to do the same. It ain’t easy.

I wish I could remember the last time it was this bad, that way I might recall some pointers on how in the hell to get through it. You always forget how debilitating this thing can get. But I know the answer, even if I can’t feel it intuitively. One foot in front of the other. Such a simple idea, so hard to implement. It’s *litrally* all I’m capable of for now. So it has to be enough, even if it feels insanely insufficient.

Suvival Mode–that’s how a crash goes. Feeling guilty about what I’m not capable of is no help. Just survive the day. Or the moment. And keep moving forward.

Lately much of my life has been reduced to one breath at a time, especially because so often I feel like I can’t even take a full one. The mind tease has been that all the worries condense and implode on my psyche and it’s too much. Too heavy. Feels impossible. This all becomes elevated when you’re too weak to brush your damn teeth. Inevitably, I lose it.

So I have to slow my brain down. Do something to break up the hardened cement of reality in my brain. Sometimes I say some Hail Mary’s, just to interrupt the cycle of overwhelming thoughts. I remind myself, I don’t have to solve every problem in this moment. In fact, that’s not even possible.

I lift my weary head, and make the next move. This is where having a dog is truly therapeutic. Just going outside and throwing a ball for Monty can help dry up my mind when it’s under water like that. Sometimes it’s just a few steps to the sink to wipe my face. Other times to a book, or sudoku, or funny videos of animals or people falling down. Yesterday it was yelling at Covidiots on Instagram. Real helpful for everyone! Or I reach out for help when I can’t do it on my own. And I’m lucky as anything I have help to reach for.

As I was doing this the other night, (trying to calm my spinning brain) (and crying) I saw Eckhart Tolle on my nightstand. I remembered he would say that’s all there is anyway—this one breath, this very moment. I was stuck, anxiety-ridden, about a future I feared but didn’t exist yet. I opened up to a bookmarked page that said this:

There is always only this one step, and you give it your fullest attention. This doesn’t mean you don’t know where you’re going, it just means this step is primary, the destination secondary.

Admittedly, I have no idea where I’m going, or how I’ll get there. But I know the only accessible piece of life is right now; the only place we have any power. So maybe all of this is just a supersized lesson in expanding my consciousness! Just great. But sometimes I think I could go on less conscious and that would be fine too. God? That would be fine.

Keep moving Mary. That’s what I tell myself. Even in the depths of despair or discouragement, I try to remember that I’ve been through insanely hard times before (Basically the whole year of 2006 comes to mind) and I can do it again. I remember that others have endured way more than me and emerged. I have to believe that all of this will unfold into something larger, better, and something that makes sense.

Most of all, I try to reassure myself that no matter how painful or difficult things may become, they’re still possible somehow. Frequently solutions arise I couldn’t have planned on or thought of. That’s the beauty of having been through such painful times in the past. They don’t become easier, you just know, by some means, you’ll find a way through this one too.

I mean that or you die–either way. JK. Do I have to keep saying JK? Probably not.

Just keep moving forward. Every night before bed, I hug my mom goodnight, then Monty and I clunk down the stairs to my room and I think Another day down, we made it. One more shit-show crossed off the calendar with a Red X. It’s very hard to stay “present” during a time when there are so many unknowns. I realize we’re all facing our own personal uncertainties, anxieties and issues right now, within this larger…catastrophe. Yet all we can take is one step at a time.

For me the quarantine hasn’t been so rough, because I’ve been living what feels like a quarantined life for a long time now. I’m a pro! Being stuck at home is nothing new for me (or most chronically ill people) except now I’m in a different state, and I live in my parents basement and there’s a lot more hand-washing. I realize just how excessively pathetic that sounds, and that’s because it is. But it’s also kind of funny, I think.

LIVE! From My Parents Basement! That’s a show I plan on ‘producing’ soon. Soon, soon…

Anyway, it’s taken too long to write this. And there’s still so much more to say and catch up on. Stories about the move and the ridiculous drive Matt and I made here and quarantining with my 90-year old grandma! All in due time. There’s plenty of it, and we’ll get there.

Besides, I know who you’re most curious about anyway. And I can assure you, he seems to be adjusting just fine…

1-1 1-2

Hang tough yall. We may all be in different kinds of hardship soup right now, but we are in it together.

Health, Happiness, Humanity

*P.S. I dedicate this to my mom, my hero, a little late for Mothers Day, who has seen me through some of my toughest moments and hardest days lately. (Weak gift, I realize) You are a rock, and I know we’ll make it through this the way we’ve made it through everything else– One shit show at a time. Thank you for making me shower. Thank you for everything. Love you a LOT.

Confronting Change You Can’t Control (Part 1)

Published on March 21, 2019 by Mary Gelpi15 Comments

It could always be Great.

My mom told me to write that on every wall and mirror around the house. I was on the phone with her, basically in a downward spiral of apprehension about a major change happening this year that is mostly out of my hands. Allow me to rip off the band-aid: My parents made the decision to move to Colorado this year, back to my hometown. Pause for dramatic effect.

Many reasons played into that decision, a big one being that a majority of my moms family lives there and we will have a tighter community of support. Given that 2/3rds of our fam is sick and one family member is a dog, the move makes sense. It can be a tad isolating out here on the ol ‘farm’.

My moms casual reminder that it could always be great was a nice departure from the supposedly optimistic adage “Hey, It could always be worse!” I’m not sure that phrase has ever really made me feel better while in the midst of a struggle. It’s like “Well hey, both of your legs could be blown off!” “Riight. That’s true. I could have zero legs right now. Cool, thanks. I feel better.”

So yes, I have both legs, but I am still pretty afraid of the whole thing and I guess that makes sense given the scale of this. It’s a big change, and since I don’t have the health to live on my own yet, it’s one that’s out of my hands, which always adds a pinch of frenzy. I’ve sort of tortured myself thinking of ways to stay here, but I just don’t have the physical stability to do it. This last crash that’s held me down since Christmas just reinforces how mercurial my *health* is and how unreliable I am as a result. A few weeks ago the crash finally let up for roughly a week, then returned angrier than before, and I’ve been essentially a half-living disaster since then. Yeaaaah wooooo!

You can see how thoughts like that (I’m sick, my life is chaos, I don’t have jurisdiction over my own life) can play with your mind the way a cat bobbles a feathery toy around. It can take your whole outlook and shape it in many variations.

One of the hardest parts the last few months has been maintaining an open mind that this might actually be a good thing. It’s meant a lot of reigning in of my thoughts, which tend to go default mode into armageddon type thinking. It’s as though some small part of me decided early on that since I didn’t choose this, it wasn’t a good idea and it would end in disaster for my life. And it’s pretty crazy how easy and quickly those thoughts can assemble, pile on one another, and leave me completely convinced that I’m going to melt away and die in my parents basement…or some other absurdity. I don’t know where that fear stems from—I mean I’m pretty sure they have internet in Colorado.

I’ve had to work to clean up the useless, unhelpful thoughts that tend to mess with my mind and sense of wellbeing. By that I don’t mean I dismiss all the thoughts or feelings I have about this—which are of course, a lot. Certainly there is a legitimate sadness and type of grief that comes from leaving what’s been home the last 18 years. Those feelings deserve their own validation and processing because, damn, it’s sad to leave the people and place you’ve come to know and love so much. Louisiana has felt familiar and comfortable for a long time, and it will be tough to leave, even if I do plan to come back. ;)

What I am referring to are the haunting thoughts, the ones that make you feel bad about things that are not within your control.

This kind of thinking totally blurs and limits my perspective about the life I have. It dismisses all the good and incredible parts of it, doesn’t see possibility or feel hopefulness or gratitude. It downsizes the significance and value of people and things just because they aren’t in line with what I had planned. (I think humanity might have an addiction to plans but that’s another day) These are just hypothetical scenarios based mostly on fear and a future no one can actually know. Like Tolle says, it is always more empowering to face facts. Even when the facts are scary or we wish they were different, it’s in acknowledging the real and being present in the now that we have access to our innermost power and strength.

I realized early on how incredibly contrasting the outcomes are that emerge just from framing things in my head one way vs. another. This is something I do have control over, and it’s become pretty important that I put this ability to use, otherwise the ugly thoughts take over and down the rabbit hole I go.

It’s been a good but difficult exercise to step back and try to just watch the way my mind can interpret the same reality in two completely different lights. The modern mystics would advise to consider the circumstance from the point of view of an objective observer. Watch your thoughts, but don’t become entangled in them. Allow them to appear, then let them go. Easier said than done, of course. But at any rate, the mind astounds me in its duality. For instance..

Here is one side of my mind thinking about the move: Reiterate the story that my life is out of control, that the disease makes all the choices, that I have no say so about things and thus can’t really be happy because it’s not up to me. My personal growth and goals and contentment will all be stunted or I’ll cease to pursue them because my lack of health and other people have the wheel and I’m just a passenger to my own life. What’s the point in trying? As a passenger I don’t decide where I go and thus my happiness isn’t my option but one left up to others or whatever new circumstances materialize without my consent. I don’t want to go. It’s not fair I have to leave what feels like home. What about my family and friends here? What about my dream to live in uptown New Orleans one day? Now it will never happen. I guess I’ll go eat worms.

I can’t tell you how easy it was for each of those negative thoughts to formulate, one after the other, building on each other like a lego tower turning into a whole city…

Now here is my mind consciously thinking about the move: Colorado? That’s cool, I guess I’ll get packing.

Could the differences be that dramatic? And is it actually possible to participate in your own life that way? In The Untethered Soul, Singer makes the point over and over that of course it’s possible! We don’t always decide what happens, but we always the ultimate say so in how we react toward the circumstances of our life. And it’s those decisions, not what happens, that leave us either content, at ease, joyful, whole, or bitter, angry, jealous and depressed.

All it took was a few negative thoughts to quickly unravel into my making the choice to play no part in my own autonomy or the trajectory of my life. Just because I’d be living somewhere else, I removed myself from having any accountability in manifesting a life I wanted or that I could be proud of. That’s a crazy conclusion to make! But when you’re present and you actually break down your thoughts, you see what a huge majority of them are insane and simply need to be let go of. That’s not so easy when you’re hit with an onslaught of frenzy and angst, like a whirlpool that takes you down, where there’s no clarity.

So I have to practice at disarming the egoic force from taking over in my head, which I do by sword fighting the air with a Star Wars lightsaber. Just kidding. Like Tolle teaches, whenever I have a future based thought made mostly of fear, I replace it in my mind with facts that are actually true. I try to repeat positive reminders instead of playing a record of apprehension on repeat with a sad ending.

In other words, I do the thing basically all chronically sick people must learn to do at some point: surrender.

As always by ‘surrender’ I don’t mean give up–ever. I mean to leave a neutral space open in your heart and your head where good things can happen because you allow a new path to be paved even though you didn’t design it. If I had understood earlier on in my relapse that reality doesn’t really care about your plans, I might’ve saved myself a good deal of pain from what was already such a hardship. I thought I could fight things that were already in place and moving quickly forward. Life was just waiting on me to catch up to what was real, instead of trying so hard to hang on to the way things were.

All I know is that there is a pulse to life, a certain beat that resonates deep within us as individuals and as a collective. We can typically feel through that pulse a general sense of what direction life is moving in. We can resist. Be the fish swimming upstream. Or we can lean in and greet life with an open and adventurous spirit, despite limits and changes and things beyond our control. It’s true I am afraid and I’m sad to leave what I thought would always be home. But I have been shown over and over the miracle of surrender, of allowing life to ‘move me’ and the amazing outcomes that can result when we feel fear but move forward anyway. It always comes down to following that thumping compass we hear deep within and far beneath us.

Here’s hoping that it just might be great.

Health, Happiness, Hello Colorado

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