I live in a place I like to call the inbetween. I imagine this island, small enough to walk across it in a day. There's a beautiful lake at the center with a small waterfall. It's never too hot or too cold. Sometimes someone is there with me, but mostly I'm alone. This is my island of inbetween.
But inbetween what? you ask. That is the question. I live in between life and death. It is one of the most awkward places to live, but mostly because it's hard to wrap your head around, and I understand why. In the world we live in if you get sick you will either get better or it will kill you. Even in the extreme cases like cancer, you fight to beat it, or it defeats you. What happens when you're sick and it won't kill you but you'll never get better? It's hard to think about, isn't it? It's almost impossible. I know because until I was diagnosed at 17 years old I never thought of it.
When I lived on the mainland I never stopped moving. I was a baton twirler, a gym rat, a runner, a horseback rider, a stage technician, a student. I defined my worth on what I could do. Crohn's Disease was my first diagnosis, but it honestly didn't change much. I knew that it had something to do with my stomach, but the meds didn't do anything at first, so I just assumed that eating always hurt and accepted that.
I didn't start slowing down until I was in college. My freshman year I held high positions in all seven plays we had at the school. Then the seizures started. It was interesting how I lost value the sicker I got. I couldn't work on shows like I had and I missed classes. I had doctors telling me that I was making it up and it was all in my head. Laying down, dizzy and in pain was when I first saw the island, but I didn't go there. I refused. I didn't want to belong there.
I didn't visit the inbetween until I was diagnosed with neurocardiogenic syncope after persistent low heart rate and blood pressure and multiple fainting spells. I didn't admit that I was sick until I literally couldn't physically stand. After all, I was what I did, so if I couldn't do anything then what did that make me?
This concept may seem odd, but I assumed that my sickness made me worthless. If I couldn't stand long enough to stage manage, or even long enough to work at a store, then what am I? I went from living in my own apartment to moving back in with my dad. I have a wheelchair in my house in case I can't get to the bathroom. I am 23 years old and I have a shower chair. It's hard to be a strong independant woman when you have to use a chair in the shower.
It took me awhile, days of being angry and frustrated, and mourning what I had lost and who I could have been. I would push myself until I ended up in the ER in pain and dehydrated to the point where I couldn't move. I would ignore my body when it told me to slow down, and in the process I made the damage worse. It wasn't until I was in the hospital for over a week, waiting to see if I was going to get a pacemaker or not that I finally gave in. On the nights when I couldn't sleep from the pain and the fear I started to go to the island. I would play in the sand or go swimming in the lake. It was calming, one place I could go where my body couldn't impede me.
I had to change my world view. This was my new normal. It may not be as good as my old normal, but it was my new normal and it did have good things mixed in with the bad. I am not a bad or worthless person because I have to fight to do simple tasks. I will never be able to do the things I used to be able to do but now I can do a whole load of new things. When I'm stuck in bed I can read and I can write. I have read more books since getting sick then I did in my years at college, and I've always been a bookworm. I spend time at the barn watching others ride. I have learned a lot about form by just watching. I've gotten to talk to people, and spend hours in the library people watching. I'll be able to work again once I have my heart figured out, but now I know that my worth is not based solely on what I can do. I am so much more then that.
No matter who you are I encourage you to take a second and look around. I didn't until I was too sick to keep moving. But really, look at what you have and appreciate it.The things and people we have in our lives don't mean much if we're too busy for them. Read a book, watch a new TV show, write a novel just because, have a staycation with your friends. There are so many cool things on the mainland that we ignore because we think we have to keep moving.
So hello. Hello from the inbetween. Hello from accepting that I will never be healthy, that I will have to fight everyday for things people take for granted. Hello from days spent in bed finding ways to bide my time. I hope that you never have to visit my island of, but that you do know that it exists because it could happen to anyone. If I can give you something from the inbetween; take your time on the mainland, enjoy life and go on adventures because why not?