Back then, I took so much for granted. I was so busy letting the adversity I had met in my life victimize me, that I  was unable to recognize how much of my time and energy was needlessly wasted wallowing in abject misery and self-pity. I guess that’s just another one of the follies of youth: the mindset that you will live basically forever, so there’s more than enough time for second chances, isn’t there?

Back then, I never understood, never truly appreciated, that I had never before been exhausted in my life. Being the most tired or worn out I had ever been was not  even remotely equal to being exhausted. I know that now, though I wish I had never had to learn that lesson the hard way. It’s somewhat like when you hear careless children or teenagers say “I’m starving! No, seriously! I swear, I can feel my stomach eating itself!!”. They can’t even begin to conceive the concept of starvation, having never been more than hungry in their entire lifetimes. They may be the hungriest they can remember ever having been, but if the last time they ate something was within the past, say, 24 hours, they are a long way from starvation. But from their perspective, they are suffering from the most cruel and unusual punishment… how egocentric the young can be.

But is this an affliction of the young, or simply one common to all of humanity? Can we ever truly appreciate something, truly empathize with an emotion or an experience, unless we too have experienced it to some degree? Since going from being relatively physically healthy to chronically ill and in pain over 4 years ago, my interactions with people on a day-to-day basis are leading me to believe that  the answer is no. People can be sympathetic, and try to be understanding, but truth be told, unless they are there, or have been there, they’ll never really understand.

A brilliant lady by the name of Christine Miserandino came up with the Spoon Theory to try and explain to her best friend, one who had been by her side through all the ups and the downs, the doctors appointments, and the agony and the suffering of her condition, what it was like to be chronically ill. To live life as someone who has to accept pain and illness as a daily reality, with no hope of it ever going away. For those of you reading this now, if you have someone in your life who suffers from chronic illness or pain, and you want to be one step closer to empathy, I highly suggest that you click that link above and read the Spoon Theory for yourselves. In essence, though, it explains that, while normal people wake up each morning with unlimited stores of energy and unlimited potential for what they can do with their day, people who suffer from chronic pain and illness do not: each choice, each movement, will cost you, and there is a finite, sometimes small, amount of energy to be doled out to each choice you make that day.

There’re no arguments for “that’s not fair” or “come on, I still need more spoons to get this day done!”, and any misstep, unnecessary or foolish step, is gonna cost ya. When my parent, who suffers from several back conditions which have caused her intense chronic pain for years, shared it with me, I nearly cried. It was such a weight off of my shoulders that I was not alone in this, that it wasn’t me just being “lazy”, like some would like to believe, and it wasn’t me just “whining” and making a big deal out of nothing. Other people feel like this, too. How dare you say that because you think I look just fine, that in your opinion there nothing overtly wrong, that I therefore must not be suffering?

I realized today that, because of my limited spoons, I am forced to live in my mind. This is not imagination, and it’s not wishful thinking. You see, my brain wants to do things I am patently incapable of doing anymore. And for the majority of the things that I could technically do, the impact, and results, would be disastrous to my ability to move in the near future. My mind is ambitious, it wants to take on the world, it wants to explore and experience. The body that lives in my mind still remembers what it felt like to get up and practice dance moves for our squads meet later that day, how to play dodgeball and be the last gal standing, and how to wake up in the morning and decide for the next 22 hours I am cleaning every nook and cranny of my house so that it shimmers.

The body in my mind can do all of those things, and more…so, so much more. It can eat whatever it wants again, and have the energy and ability to make lavish meals for breakfast, lunch, and dinner, and then wolf ’em down with reckless abandon. It can wake up, look at the clock, realize it’s running late, and immediately dash into the shower, and be out the door in 10 minutes flat. It can do some Zumba and then revel in the glory of the way it feels amped up, and strong and limber all of a sudden.

In my mind, I can make plans for something in the near future and be sure that I’ll physically be capable of making it, and have a great time doing it. In my mind, I get to live every day the way I would want to, and I would get to be normal.

But unless you’re there, you really can’t understand. It’s like, I can live it, in my mind. It’s not some fanciful wish or dream. In my mind, I’m doing it. I envision it to be true in a way that I’m experiencing it. When i think of it, when I’m planning it, when it’s in my mind, i can actually physically feel the movement in my muscles, though I’m sitting still. And then I get up to do it, whatever it is, with a new bounce in my step: this moment is the start of the rest of my life!

And then….

Reality kicks in. With the pain. And the illness. And the truth of my condition, and the helplessness, and hopelessness, that comes along with it.

…and so, I pick myself up off the floor – emotionally, mentally, spiritually… and sometimes even physically. I take a deep breath. And I count my spoons.

Not just for the day, but for the week..sometimes even further in advance. And on and on I go. Because I will not give up living life, regardless of how restricted or different or difficult it may be. I will make the best of it, despite the obstacles, despite the lack of help or support from the medical system, from doctors who care more about their paycheck than a patients woe, and despite who does or doesn’t understand or support me.

I am NOT a victim of my circumstance. Each day I achieve something, no matter how insignificant it may seem to you, I am victorious.

And as long as I know that that much is true, that’s all that really matters.

Happy Monday Y’all!

Cheers