Sometimes it is really hard to think about they past. The time before everything went down hill. Before the first injury, before the first panic attack, before any of it. I don’t think anyone can remember the first time they had a cold as a child. But I sure can remember pneumonia in 2nd grade [mainly because I had a lavender/pink sweat shirt sweat pants combo I wore when we swung by my school in for homework, and of course my best friend loaning me her VHS of Sleeping Beauty which I watched on repeat all night while my elderly neighbor went to the 24 hour Kroger for more medicine at 3 am].
Side note- Cath I still have that VHS…I never gave it back.
I sure as hell remember falling off my playhouse backwards a few times, getting hit in the head in soccer games by the ball, and naturally, all my many clumsy trips and falls.
But what I have learned over the last few months is that going forward, that past is gone. I can no longer run around carefree without shoes for fear of stepping on something sharp and falling back to square one with CRPS. I’m not sure I’ll ever get the chance to ride a horse again, something I can say with true honesty I missed doing after childhood. I don’t think I will ever go skydiving, or hiking solo, or rock climbing, or deep sea diving, or ever get that Motorcycle I really wanted (Kawasaki 250R 2013 edition). I will always have to be aware when I travel, go somewhere new, or do something different. I will always have to navigate differently in the future.
In the past, I would pick up heavy things I probably shouldn’t have, carried a purse 3x my weight filled with useless crap and unused lip glosses (the 2006-2008 trend), and moved produce boxes around like I was in the gym. I would go to the gym and push myself, jump in cold water pools half naked with friends at 2am, and have crazy, fun, drunk nights. But now that’s changed. And I’m not saying I didn’t feel this way before. Hell, I’ve always been the mother hen. Constantly aware when I needed to stop after that 2nd or 4th drink because I knew I needed to sober up to walk back to my dorm with my friends and take all my meds. I could never stay out all night and crash in random places like my friends did, because I had to stay on my routine. For the longest time I was fear driven. Driven nearly insane by the constant caution my life had to be under. “wash your hands every time you touch something” “carry germx” “ask whats in the food before you eat it” “make sure you have a balanced diet” “watch what you eat” “watch your surroundings” “be careful”.
Shockingly, not all of those came from my parents, most came from me. From my need to control and protect myself in what little ways could because so much was out of my control. I could study all night or for 15 minutes and still make the same grade if my brain decided to be in a fog, or my ADD meds kicked in at the wrong time and I ended up bleaching the inside of a fridge (true story- my roommate found me on the porch detail scrubbing the drawers mid November, I know had a mid term the next day and I actually hate cleaning). I could wear a mask to every class, clean my hands 100 times, and still go down with a head cold for 3 weeks and forever be playing catch up. I guess that’s really how I’ve always felt deep down; like I’m playing catch up to everyone else. No I wasn’t the shortest, or slowest, or smartest, or dumbest kid in anything, but I was never the best. I was just OK at things. And then when something good finally started, down I would go with my body crippling me. Don’t believe me? Let me just list this out for ya.
Sometime between being born and age 6 – dehydration that required an ER trip and one VERY expensive cup of apple juice
6-11 at least one case on pneumonia, 15 strep throats, a dozen head colds, and a virus that left me unable to walk for 3 days but took 7 days to fully recover (thank you dad for finding me scooting my way across the carpet floor to the bathroom from my bedroom)
11 cyst removal, I pretended aliens landed on my face and we had to remove them for research, and of course the migraines started.
12 RSD makes its first arrival after a soccer game and a birthday party, my birthday party to be exact, where I turned 13. During this same adventure marks the first of many experiences of anxiety, panic attacks, separation anxiety, grief of loosing two grandparents very close together, and friends leaving me behind. I did eventually recover from RSD thanks to my pediatrician whose podiatrist husband had just learned about a rare disorder in children and adults and the key marker was a purple/blue cold limb. And they treated me, I learned how to walk again with a lot of pushing from my mom, and a beautiful sandy beach where crutches are a no go.
13-14- here come the heavy hitters-First got surgery on my 14th B-day (whoo…) for a cycst and appendix removal, followed quickly by a summer of depression that lea to bad medicine advice and thus my first mental breakdown, three weeks into high school, and naturally it occured immediately after a “back to school everyone get sick” week long adventure. This led to 3 months of homeschooling and suddenly, I was out of the loop with my friends. I wasn’t “cool” or in the know with them. I was always missing because I was sick, and who really wants to tell the same story twice just because one person who wasn’t there missed it?
From here on it’s the same old story for the next 4 years, boyfriends, break ups, friends, friend break ups, illness, shitty doctors, and overall just a struggle to get by while in a hazy fog of medication. [Yes, High School does suck]
Now here is a solid positive- We found a therapist who understood me and the way I looked at the world. Dr. Cressie. A woman my mother found after years of searching and fighting for me to get better help. Of course my therapy group consisted of girl 3 years older than me, hooked on drugs and pot and sex but suddenly I understood where I stood in the world. I couldn’t be sheltered and live in fear forever. So I didn’t. And Dr. Cressie showed me how. [may she rest in peace]
So now we’ve almost hit 18, and Dr. T rolls into the picture. A woman I admire more than almost anyone else. She listened and looked at me, not my symptoms, me as a person, as a human, as a young adult, as a person in pain. And she helped.
So now we can skip through college, basically exactly the same adventure only I’m rolling solo with my nerdy crew [yes we were total nerds and I loved it while it briefly lasted] I had some bad relationships, some good ones, some good roommates, some bad ones and some very, very strange relationships, but I was still cautious, and controlling. Controlling to the point of developing an eating disorder, isolating myself, and just overall not learning how to cope. Between a fall that ruptured my knees bursa sacks, to sciatica, to a long list of very very bad relationship choices, I became a mess. Ended up sick again, in an ER for 13 hours of hell [just ask my mom, she managed to pack her bags, pack the car, drive to KY from GA, 7 hours before they saw me] which left out of school fighting to get it together. Then I had to fight to get back into school, finish my degree, and learn to cope with what was real depression and anxiety from an actual situation and what was just a chemical misfiring in my brain that was presenting its self like that.
So why am I unloading all of this on to you dear reader? This has nothing to do with my current injury or situation. And it’s not to invoke some kind of sympathy or make me out to a hero, but all of these life experiences have built me into who I am. Had I not learned at a young age how much bullying hurt, maybe I wouldn’t have had the strength to stand up for someone else. Maybe if I hadn’t had migraines, then I wouldn’t have known how to help a friend in desperate need the night before her practicum. What if hadn’t had learned about bad relationships and what it feels like to be completely out of your mind, then I wouldn’t have known how to stay with someone who was sick all night from drinking too much and recruited another friend to stand guard with me to protect her. What if I hadn’t been diagnosed Bipolar and Depressed and had just given up instead of fighting to change how it’s viewed. Maybe if I hadn’t been saddled with all these experiences, the pain, the loss, the frustration, the anger, the shame, the annoyance, and the struggles, maybe, just maybe, I would have been normal.
But who wants to be normal anymore. I would never trade a single one of those horrible, painful, sad, tear inducing moments for anything else in the world. Why? Why would I say that? Because I am a fighter. Because I know and understand exactly what it feels like to have nothing in your control and feel like the world is cursing you. Because I have been there by peoples sides when they’ve come in broken, hurting, lost, and needing something. And I can only do that because of what I have been through. What my family has been through. What those loyal to me have been through. When I hear someone is broken down and frustrated by the fact that no one seems to be able to give them answers, here I am, same boat, same story, and I am not giving up. The saddest part of this disease, CRPS, is it’s called the Suicide Disease. Because every single day, people give up. They let it overwhelm their minds, bodies, and souls, and give in. And yes I can say all these strong, pretty words and still be hurting and bleeding on the inside, but I have chosen not to. Not to allow this to determine my life, my path. So yes, I will have to let go of the past, I will have to accept I cannot control muscle spasms, and pain, and the emotional roller coaster it puts me through daily; but what I can control is me. Is who I am inside each and every single day. What I do when I walk [or hobble for now] out that door each day.
The fact is, I’m not fight cancer here. I’m fighting something just a chronic but you can’t see it, and with equally limited treatment options. But what those fighting cancer and I have in common, is the strength to keep going. To stay strong amid everything out of our control. And that it can get better. And one day it will be better. Maybe not everyday, maybe not every hour or minute. But if we each, all of us out there fighting something, from cancer and CRPS, to depression and anxiety, to abuse and heartbreak, and even fighting through grief, can do one thing, it’s stay strong. Stay strong for each other. Stay strong for those around us who see the suffering and have trouble seeing your future, and remind them that you are a Wojownik, a warrior. A fighter. A dreamer. And the future.
Stay strong my friends.
Life On Fire 