This Is Not the Life I Fought so Hard to Live

I’ve said that so many times in my life. So often I have felt completely trapped in this world. I’ve even gone as far as to say that if I had died at thirteen, I would never have experienced how painful life can be. Usually, whoever I’m with gets upset and my response is simply “it’s a fact.” Which I believe it to be. Sometimes it all feels so bad and so pointless. I used to believe that I had used up my lifetime allowance of luck when I survived. I thought that explained all the horrible things I’ve been through since.

This is not the life I fought so hard to live, but that doesn’t mean it never will be.

I saw a video recently where the person in the video asked, “If you could tell your younger self anything, what would it be?” I thought to myself, I’d tell her not to listen to anyone and do whatever she wanted. Then I realized I don’t even take that advice now. The reason I’m not living the life I envisioned, is because I stopped fighting for it. I thought I’d won the war when I survived, but I had only just won a single battle.

They don’t tell you that having the transplant might be the easiest part. They actually hype it up quite a bit. “You’ll feel so good!” “You’ll go back to school and see your friends again.” “You’ll dance again”. None of that came true. My body was different, and I had to relearn how to live in it. My friends abandoned me because they were afraid. My dance teacher wouldn’t let me dance because of her fear. No one understood what happened to me and neither did I. I felt like I had lost everything because of it. I started to accept this as my new reality. I had used up all my luck to survive. That was it. I was destined to be unhappy and I truly believed it.

Navigating the world with an invisible disability that isn’t really a disability but still somehow holds you back financially, energetically, medically, and mentally, is extremely difficult. I don’t sleep well, I’m scared of things you may not have even heard of, I’ve battled infections I’d never heard of, I’m fighting for things I need to live. I’m almost always dealing with something and it’s exhausting. It’s all very heavy and lonely. But that’s only one part of my life.

I realized just now in the shower (where I do my best thinking) that it wasn’t that my luck had run out at 13, I just didn’t know that the fight wasn’t over. Think about it. It’s kinda easy to feel like crap. Someone writes a rude email or criticizes you or is just aggressive for no reason. That ruins my day. But I have to do the work to feel better. Being rude to people doesn’t shift your weight to them, it just weighs you both down. Sometimes it’s hard to help it. I’m sure many of us are battling depression, loneliness, anxiety, and illness, loss, and much more right now. It’s so easy to let those things completely weigh us down. It’s heavy, literally. I don’t know how many times I’ve wanted to “match the energy I’ve received” but I know that would just make my life and theirs even worse. But it’s also not any more noble to let yourself wallow in the weight and let life beat you down over and over again.

I’ve been just kind of bopping along trying to mind my own business and stay out of trouble for the last twenty years. I’ve done everything I was supposed to do. But trouble always finds me anyway. Trouble is everywhere. There will always be someone to beat you down and make fun of you, completely mess with your beliefs and try to zap every ounce of goodness out of you. No matter what life you’re living, there will always be trouble. I promise. So, why not actually fight for a good one? I’m asking myself this at the same time. Why did I ever stop fighting for the life I fought for when I was 13? What made me believe that it would never happen and why in the hell did I ever let myself accept that?

I used to idolize my 13-year-old self. I used to think that girl was so strong, so resilient. That’s what everyone always said. I used to wish she was still here so she could save me now. I truly thought she was gone forever. I mourned her. But she was me. She didn’t know she was resilient or strong. She just wanted to get the hell out of a bad situation and go the heck home. She wasn’t any different than I am now. Except with less white hair of course.

Just because you worked hard to get somewhere doesn’t mean that’s the somewhere you should be. Just because you’ve been in a relationship for a certain amount of time, doesn’t mean it’s the one you should be in. Just because you’ve reached a certain age, does not mean you’re too old. Just because you haven’t achieved your dreams yet, doesn’t mean that you never will. You just need to keep going, even if it means you have to shake up your whole life to do it. It may seem daunting, but you don’t have to do it alone. Let’s all keep fighting because why the hell not? Let’s not miss what might be the best part of our story. We deserve it.