Guest Post: The Weight of the World is Measured in Spoons

You know, I don’t really care what scientists say about the matter. Whether it’s a hundred pounds, or trillions of tonss, I have found a more accurate way to measure the weight of the world.

Wait for it….

SPOONS!

Now, if you aren’t familiar with spoon theory, take a shamble over to “But You Don’t Look Sick”  It was written by a girl that has Lupus (Which I have, so I instantly loved it, because yay I’m not alone). I first read it ages and ages ago, and forgot about it. When I started making more acquaintances who lived with disabilities, it came up again in conversation, and I was reminded of it once more. Having gained even more diagnostics since the first, I found this a very easy way to make myself heard to people around me.

And if you’re the type of person who has to worry about spoons, then I’m sure you can empathize with how nice it is to have a short convenient way of explaining how you feel that day to someone else. “I don’t have the spoons today.” That’s it.

Short, easy, simple. And the world keeps turning.

For the last 15 months, I have been dealing with the horror that is learning that my doctors made me half blind from 17 years of neglect. I lost my job. My Driver’s license. My Car. My independance. My career. My ability to ever work again, my good credit, and so much more.

In turn, I gained a team of lawyers, a hassle of medical problems, a set of new doctors, Long Term Disability, and so many things that came to complicate matters as a result of this.

Now, to be fair, some of the problems I’ve been facing have been of my own doing. But where before I was controlling my problems, my newfound situation just exacerbated the situations, and made everything that much harder to cope with.

I do not know if you can relate to this, but let me tell you a truth.

When the whole world seems against you, when your every day is a crisis, when you doubt the validity of your own existence, then outside matters, issues of the world, become meaningless. Your every thought, you every action, turns inwards to try and cope and handle the daily struggle that is living. Too many thoughts come up at the surface, and it isn’t long before you decide to abandon politics, newspapers, popular ulture, and anything “worldly”. Because you have limited spoons. And the world becomes a lot smaller.

For over a year, I have been living in a universe where the entirely of the world revolved around me. I’m not saying my ego got in the way. Quite the opposite. There just wasn’t enough of me left to go around, so my view of the world had to shrink to allow survival.

Would you like to see my world?

Shall I show it to you?

It is centered on my house. It is where most of existence happens. I have it well organized.

Sundays are my one “fun” day. I have people over for board games every week.
Mondays is for extra appointments.
Tuesdays were afternoon therapy at the Civic hospital until recently. Before that they were the day CNIB sent me a blind man to help become accustomed to my vision loss.
Wednesdays I have counselling.
Thursday evenings I have the chiropractor, and then visit mom.
Fridays are for extra appointments. Also every 2 weeks the cleaning lady comes by. That takes all my spoons for the day.
Saturdays are my one day to catch up on sleep.

In all of this I have to calculate that any appointment is 1 hour bus each way there since I lost my ability to drive.
Every night I sleep 12 hours or more. (My health is very inconsiderate to my desire to have a life)

Every time I think something is getting resolved, 2 new problems show up, and the pile of problems keep growing. So does the depression. So do the bad thoughts. And my exhaustion. And the list of things I have to do.

The last 3-4 months, every spare moment on a Monday, Tuesday or Friday were spent trying to get things done that needed to be done. The workload is insane.I won’t go into details here, but suffice to say, it’s more than I’ve been able ot handle.

Eat. Sleep. Wakeup. Go to appointments. Return phone calls. Talk to the lawyers. Talk to accountants. Talk to CRA. Talk to social workers. Eat. Sleep. Rinse. Repeat. And don’t forget to add constant anxiety to the mix.

I’m getting a little off topic, but yeah. It’s been rough. And with all these disasters that are lining up one behind the other, it feels like I’ve had the weight of the world on my shoulders. It is heavy. It is hard. It is exhausting. And it is never-ending. And when you already have a dozen disabilities, having the weight of the world on your shoulders is just too much to be able to handle. You slip. You slide. You fall. Pieces of the world fall off, and shatter at your feet. You cry. You pick up what you can. You move on. Rinse. Repeat. If you are lucky, you’ll find a moment to brush your teeth once a week or so… on a good week.

It is a never ending struggle. It drains you of your humanity, and your ability to see further than 3 feet in front of you. All you can do is walk. Stumble. Fall. and watch the world fall to pieces around you.

And it never ends… Except when it does.

I really don’t want to jynx it. Every time I’ve accomplished one task on my huge to-do list, another 2 would show up. And I couldn’t keep pace.

Today was different. I received 8 Notice of Assesments in the mail from CRA. (I was a bit behind.) Normally it wouldn’t have been an issue. Except that my old accountant lost all my papers, and I had to go digging and calling and begging to get copies of everything re-sent to me. Not to mention had to have my lawyers ask for my medical receipts 3 times from an old health insurance company. That alone took over 6 months just to get the receipts.

But it’s not just the taxes that are done.
My insurance wanted me to apply to CPP disability. I got the last piece of paperwork for that today Friday..
The NOA I got today (Monday) was the last piece I needed to apply for drug benefits.
It was also the lynchpin to being able to complete my bankruptcy.
A few hours of paperwork and phone calls today, and everything was done.

And I can’t accurately portray what that felt like.
The last year has been a constant fight, EVERY DAY. Always struggling. Always coming up short. And somehow, today, all the major issues got finalized. (To be fair I have to wait 2-3 months to find out if CPP accepts my application, and I still have to apply for the drug benefits, but I have everything I need. I don’t have to worry about how much I owe CRA anymore. I still need a new doctor, but for now the Long Term Disability insurance is off my back. And the legal issues surrounding my vision loss due to neglect are still ongoing.) But all said and done, all the adult-ing I needed to do is done. Now it’s up to (many) someone elses to finish what I’ve sent out.

My life, my whole world for the last year, has been this constant fight to get all my paperwork in order to get my medical receipts, get my taxes done, get my insurance off my back, get my disability status recognised, get my finances under control, and survive my health issues. And I’m sure I’m forgetting something in here.

But the papers I received Friday, and today were the last piece. My work is done. The crumbling, crushing weight of defeat, the weight of the world that paralized me for so long, lifted all in an instant when I hung up from the last call today.

It took me several moments to understand the feeling that came over me. It was strange, and unprecedented.

I could breathe.
I could think.
My muscles all went limp.
My shoulders didn’t feel as heavy.
My head cleared, like it does when I stop being dizzy every time I stand up.
My heart slowed like it does after an unexpected visit by a huge spider 2 inches from my face in the shower.
My pain level dropped.
My muscles tingled.

And somehow I ended up doing dishes, baking banana bread and carrot bread, and doing more dishes, and sorting utensils, and cleaning kitchen, and next thing I know, it’s 8h after my first dose of Tylenoldear today.I normally take it every 4 hours.

I couldn’t explain it for a while. But then I realized. This crushing, crippling weight had been lifted off of me. All of the problems in the world had just reached their finishing point. All at once. And my responsibility was over.

I was overwhelmed by the spoons coursing through me, this unexpected energy that I don’t remember the last time I felt it.

Today, I am optimistic. Perhaps tomorrow the depression will come back full fledged.

But for now, the weight of the world has lifted off my shoulders, and I realized just how many spoons it took me to be constantly dragging all that baggage and responsibility, the frantic never-ending struggle that I carried uphills both ways from the moment I woke up till the moment I fell asleep.

Today, the weight of the world left my shoulders.

Today, I gained a seemingly endless supply of spoons.

Today I was productive, and DID A THING! (Well like, LOTS of things actually)

Without that world pressing down on me, I was left with it’s equivalent in spoons. And you know, spoons don’t weight that much. If you consider the whole world to weight the same as a handful of spoons, you understand why gravity suddenly disappears, and you start leaping, weightless, from one branch to the next, from one adventure to another, bouncing off the walls, flying around the house, being a veritable whirlwind of activity, a mini-tornado swirling through your house.

When you are sick, your existence shrinks, and what you see and feel becomes your world.

You carry it everywhere, never realizing the cost of it.

Until for a moment the clouds part, and you realize the world has gone, and you are left with a handful of spoons that weight nothing. And gravity flips on its head.

And then you are weightless, as you spread your arms, spin in place, and take to the skies, flying.

Free.

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Guest Post: The Weight of the World is Measured in Spoons

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