Could Have Been.

This post is more or less looking through the other side of the lens of my last post which was an introspective look on who and where I am as a result of the life I've been given, pain and all; whereas this post is the other half - who I could have been. As I write this I am faced with the possibility of yet another unexpected surgery. I am once again thrown into the vicious cycle of finally accepting where I am physically and getting into a groove of managing everything, and then another bump in the road that comes that wouldn't even be there if I wasn't sick. If it wasn't for HER. I've just gone through 8 months of being in and out of the hospital and finally things were calming down. We made the big move, started the great new jobs and were getting the fresh start we've been searching for for so long. And now this? ANOTHER surgery?! More daily pain? WHY. And I can't help but think what my life could have been like, who I could have been, if I didn't have pain, if I wasn't sick.

I don't remember what it's like to not be in pain. Even when I was little, I was always slower and more limited than the others. I vividly remember bawling my eyes out in third grade when I was called a crippled for the first time. Granted when I was younger my pain was a fraction of what it is now, but it was still there. I don't remember what it feels like to not be completely exhausted regardless of hours of sleep I get - if there ever was a time when that was reality for me. I've accepted where I am in life physically, I've been to rehab to learn positive coping skills and to get away from a life dependent on pain medication - but that doesn't make it any easier.

I've been in extreme, unrelenting pain every day I can remember. You'd think at some point you would get used to it, but you don't. If anything it gets more exhausting. Harder to get up and fight another day, knowing the next day you have to do it again. Sure, in a way it becomes your "normal" and not every day is the same intense physical battle. But being in this much pain for so long, topped with exhaustion, with absolutely no rest for decades is not only physically wearing but emotionally and mentally devastating. Chronic pain is constantly pushing back on who you are and trying to defeat your will to have a normal life and to continue getting up everyday and being a part of the outside world. You begin to battle anxiety and depression, two things I never truly understood until I experienced them. It changes who you are and how you view the world, whether that be positive or negative. Every single day is a fight to make sure it's positive. Your brain begins to turn a normal activity like someone running down the street from having a positive reaction of "Good for you! Getting out an exercising is an awesome and hard thing, look at you go!" to "UGH. Look at you, rubbing it in my face that I can't do that. How dare you!" Obviously irrational. But neither is unrelenting, never ending pain. It becomes a constant snark-check when someone constantly complains about a small headache, or having the flu for a few days. If you have the flu, you feel like crap for a few days and get better. I, and millions of others like me, feel like the flu on steroids every single day, with no end in sight. It's very easy to lose perspective and snap at those around you just because you're in pain all the time.

When I was younger I had the same big dreams as most kids do - I wanted to be an astronaut or go exploring every country I could name, and for a time wanted to be a killer whale trainer at Seaworld. But as I became sicker, those dreams naturally had to shift. What no one aside from my husband knows (until now) is that in my most ideal dream world in which I am pain free and able bodied, I would like to have been a dancer. I'm obsessed with dancing, whether it be competition shows, movies, youtube videos...I become mesmerized watching their seemingly effortless movements, so flawless and beautiful that anyone in the world can share in the passion. Regardless of color, language, country - the language of dance is universal and can cross any barrier. Not to mention it is a feat of pure athleticism. And the incredible costumes? Come on. However, that is clearly not where my life was meant to end up.

Please don't misunderstand the intent behind these words. I hesitated to even make this post public because I fear I can't adequately express this strange double-edged sword that is chronic illness; but if this is truly to be a chronicle of my life and wading through this life, I have to include the parts that aren't always so pretty. I could not have imagined having the wonderful life I have. I most definitely NEVER thought I'd find someone who wanted to spend the rest of their life with me, I could have never imagined being in the nutrition field and having a job I so love going to every morning, or living this incredible life I have. This is clearly the plan God had for me and it's so much better than I could have dreamed of. However - that doesn't mean there won't always be a part of me who mourns the me that could have been if I had been born healthy. I have the answers to most of the questions I've asked for so long. I know what conditions I have and know that a cure at this point is not feasible. My life is now about managing the random assortment of symptoms that appear whenever they want. I'm not going to be a world renown dancer. But now in the face of adversity and seemingly everything trying to push back at my will to fight, I have a choice. I can still make the most of this life and find new adventures I could have never thought possible. I've accomplished so much already, and still hopefully have many more decades to continue achieving new dreams. I may not have the physical health so many have, but I have more than a lot of other people as well. I have a job I love. I have a roof over my head. I have a loving best friend who I get the honor of being married to. I have the weirdest autistic dog who gives me the love and snuggles I need and who is always excited to see me. I have an incredible support system built of many different people who bring me so much joy and love. This is a great life and I am grateful to experience it.   Even if in some alternate universe, an able bodied version of me did become a dancing sensation; that doesn't mean that life would be better than mine. My life may not be perfect, and I may have more physical struggles before I'm 30 than many will have in several lifetimes - but it's beautiful in it's imperfections. 

When I wake up every morning I don't know if it's going to be a manageable pain day, or an excruciating pain day. I don't know if I'm going to wake up with an attitude of COME AT ME WORLD, I GOT THIS! or if I will want to just hide away and not be conscious, looking for any way to have a small inkling of relief. But I do know that every morning I will wake up to my best friend, pray to a God who hears me, and has the greatest plan for this version of me.