How you Live

Obviously, I’ve been getting a lot of questions over the past 10 years, because my entire personality took a 180. Everything I cared about completely took a backseat. How do I live is a big one, and how am  I living life differently now, and I think that’s a very hard thing to answer, mainly because “living” is such a subjective term meaning it’s different for everyone. But for me, it was just about slowing down. I almost felt like as all children do, I just wanted to get done with school and be a “grown up”. I know what the heck was I thinking!? And so I never really took the time to look around at my life and say WOW I have a great life, A. because I didn’t know any different, and B. because I was too busy going through life as fast as I could. And getting sick forced me to look at life as if it were to be taken away at any second, because I learned very cruelly that it could, and that needed to be taken seriously.

Getting sick has meant a lot of different things for me. It has meant, appreciation, it’s meant loss, it’s meant missing out on some great experiences of life it’s meant so many things. And yes I would be lying if I didn’t say every once and a while, “I get it God, can we just move on, I don’t want to be sick anymore, I’ve learned everything you want me to learn”, because I’m human and humans stumble, humans fall, humans question. We are an imperfect species that is always looking for “the real answers”.

What does it mean to live? I think the answer is different for everyone, because everyone has different views on what they think “fun” is and what “relaxation” is. Some people think living is going on vacation every chance they get, some people think it’s spending time with those people who are important to you. But to someone who is chronically ill, the answer is extremely limited to how we are able to engage with the world. If we are able to put on our brave face, and go out to a party for 2-3 hours, but maybe pay for it later. Are we willing to do that? Sometimes the answer is yes, sometimes it’s no. And when we are able to do these things, we hold onto them, like they’re precious gems, because to us they are. They were proof to us that we were able to successfully go out and LIVE!

Honestly, not LIVING, is what scares me the most. Am I not going to go out for a walk, on that 70 degree and sunny day, because I’m too afraid, I’ll trip or be in too much pain to do it. So then I don’t. Am I not living if I don’t? The human psyche thrives on predictability, and to most people, taking a walk has absolutely zero inherent risk.  But my life is full of risk. I know nothing about what will happen when I walk out that door. If I’m going to have a malfunction and pass out from pain, if I’m going to have a pain attack, etc. Your mind would go crazy if you couldn’t predict what’s going to happen in your lives, at least a little bit, but that’s all day every day for me. And for a while, that drove me nuts because I was like you, I loved to plan ABSOLUTELY EVERYTHING.

A lot of people don’t see it. If I were to walk into a room and see me, I wouldn’t see it either, because I try soo hard, sometimes almost too hard to be normal. Because if I can  convince myself that I’m normal, I can pretend none of it exists-not the fear, not the pain, not the surgeries not the pills for just one more second. And I can be normal. Isn’t that what anyone wants? I remember when I was in grade school, I wanted so badly to be in the “popular group” because I felt that’s what society projected as normal.

People ask me all the time, in fact someone just asked me at work, “why are you always tired”? I didn’t want to get into it with him, so I just said I went to bed late last night, but the truth is, because my body is battling itself every second of every day. It’s because my emotions are on overload from feeling sick, to trying to feel happy, to being scared, to being lost all in one day. I desperately try every day, when I wake up, to put on enough makeup so people won’t ask why I look “awful” that morning. It’s hard fighting something you can’t see. It’s even harder fighting something you can and will NEVER be able to predict because that means you need to be at the ready 24 hours a day.  But this isn’t what life is all about. It can’t be what life is all about. It all comes down to which life you would rather have. And yes, while I would love to have zero pain, would I be equally as happy, and as compassionate as I am right now? Probably not… So I think you know what I would pick. <3

To Live Through Another Breath

I've been dissecting a phrase for a long time, when suddenly I realized, that maybe it's a lot easier of an answer than I'm making it. I was asked a lot early on when I was really sick, if I missed my old self, and I thought, "What? My old self? I'm right here?"  It was like I couldn't understand what they were asking me, but now that I've been "sick" for a long time, I'm realizing what they meant by that and my answer is YES, I do miss my old self. The self that was so carefree, so innocent the sort of person who didn't need to worry about her "health schedule" when she was making plans because she already knew she didn't have any doctor appointments, the girl who didn't dictate plans by her "meds schedule". Then I realized though that people unless they are effected with the condition/disease in a personal way, they really put it out of sight out of mind. I was always sort of insulted, when people said with disgust in their voice, "You don't know about a disease unless someone close to you is effected with it." But then I realized that yes while that does seem sort of accusatory it's really true. I never thought about kids getting cancer, or kids born with this or that, I didn't think there was anything wrong with me, until I was 15. But now that I'm an adult, in the world, answering for myself, loving my life, but NO not doing what I wanted and thought I would be doing now, yes I do have what if moments, and I ask myself, "What if things had gone differently", but then again doesn't everyone? "What would I be like today?" Of course, I try not to have them all the time, because let's face it that would just be way too depressing, but I think as a young child, you have this amazed view of what it's like to be an adult, and you have these sometimes unbelievable goals for yourself, I remember, I told my parents when I was 5 years old, that I was going to be the one to find the cure for cancer. And yes I truly did believe that, and also that I thought being an adult was being able to buy gum whenever you wanted and not have to ask anyone. How wrong was I?
I don't like to say, "Why me", because I learned very early on that it doesn't do anything except use the valuable energy that you've been gathering all day, and use it on something you can't change. I said this to a friend who's probably reading this right now lol, and she said yeah but sometimes it's good to say it, and I guess I will agree to disagree :-). I do see the benefit in just getting it off your chest, and trust me I do that a lot more than people seem to think. And I do value everyone's opinions, I do, and I love my friend lol, I've bounced a lot of things off of her over the years, and she was there with me when I was the sickest, and she's still with me now even though we are far apart, and I can't thank her enough for her friendship. Thank you Lizabeth Riggs, thank you for being there, even though you weren't "there". You were there when I thought I was going to die, to say No you're not, you were there when I had the stroke to say I know you can do this, when I couldn't tell myself that because I couldn't speak. And for this I'll never be able to adequately express my gratitude! Even during my freak outs... I just don't see a point in venting out loud if you're ultimately not going to be able to do anything about it. I tried doing that, and I got nothing out of it, mostly because the people I would freak out to would be sitting there like a deer in the headlights, right after I just unloaded on them, with that look of fear on their faces, that look of, "Uh Oh what am I supposed to say, I need to say something? Should I agree with her? No that's too easy, but I can't disagree, oh no and then they just keep staring lol. And so when I got sort of what I thought was depressed, about it, I didn't like that feeling, and so I chose to look at it as I was given the ultimate opportunity, I was given the change to relearn everything I learned as a baby, but learn it through the eyes of a teenager. It's truly amazing seeing the things you take for granted everyday, and the admiration for yourself when you're able to relearn them and I'm still amazing myself, with my recovery, and the things I've been able to relearn and I know that despite the things Dr's tell me all the time, that my recovery isn't over yet, it can never be over.
I've always had mixed feelings about the past. In one way, I'm  upset that I didn't get to do all the things I wanted, but looking back on it, I think, who would I be if the past didn't happen the way it has? They say you can't miss what you never have, so I guess I wouldn't know one way or the other, but, I still always have that thought in the back of my head. I always told myself from the time I was tiny, that I wanted to witness a miracle, but maybe I've been seeing one all along. The very fact that we take a breath every second or so is a miracle in itself. It's just so instinctual to do so that we never think about it, but it is. It means that we have been chosen to live through another breath. Think about how many people just took their final breath? And we were chosen to live through another one. We are the lucky ones guys! So even though I feel bad about myself sometimes, I've realized in recent years, that I have so much more to be thankful about than I do to be upset about! The simple fact that I'm alive after all I've been through is over looked by so many people, myself included, but that doesn't mean that every once and a while I don't stop and think to myself, "Darn, I'm still here..." And then look up at the sky, and say,"Thanks big guy". Because he chose me out of millions of people to live through another breath.