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