Reason and meaning is what we bring to life. Gravity doesn't exist so my feet can touch the ground. Gravity was there, and I developed in it's effects. When things happen in our life beyond our control, we didn't put those things in to play. They're beyond our control! By their very definition we couldn't have brought those things into play. These larger effects that we live in, like chronic illness, have nothing to do with any reason. It just is. Any reason and meaning is what I bring to it.
Early on in my disease, I figured out that the pain wasn't punishment. Because I could do everything right, and my head would hurt. I could do all the "wrong" things, and my head would hurt. Intensity, manner of onset, aura, sensory sensitivities... all that was completely random. It was a migraine that just didn't quit. So I knew, after about 6 months, that it wasn't anything I was doing wrong. It just was. And if it just was, then it couldn't be my fault, and I didn't have to feel bad about it.
Yeah, this is not the life I wanted, worked for, dreamed of, etc. etc. But it's some person's dream. There's someone out there, who's got it worse than me, who is wishing they could be me. I've been looking at this whole thing all wrong. Yes, things have been taken from me: reasonable expectations have been taken from me. I had the reasonable expectation of being a mom. Nope. I had the reasonable expectation that I could live a narcotic-free lifestyle. Nope. I had the reasonable expectation I could live where ever I could afford to live. Nope. And I could go on...
The point is, the bar has be raised. I can live nothing short of an extraordinary life. It's impossible at this point. Hell, the fact that I'm alive is a miracle several times over. Most people I know would have to get into to some pretty extreme activities to be able to risk their lives every day. Me? I just have to wake up in the morning. I give death the bird each day that I take my pills like I'm supposed to (barring any sudden accidents, of course).
And somewhere, I heard a voice say, "Good, lord, woman, do you know how stubborn you are? The only way that we could get you to give up on these dreams was if we ripped them from you completely. Otherwise you would have found a way around it! So we had to resort to drastic measures, or otherwise you wouldn't be available for what's coming next..."
"So, if you're frightened of dying and... you're holding on, you'll see devils tearing your life away. But if you've made your peace, then the devils are really angels, freeing you from the earth." -Jacob's Ladder
If I want this life to have the fulfillment that I knew I could get from my reasonable expectations, then it's gonna have to be big, because those were big dreams of mine. It's going to take a lot to fill that void. I don't know what I'm going to be yet, because I'm just learning what this new life is capable of, within my limitations. And that's going to take a lot of time.
To put it another way, right now, I'm only 10 years old. My new body and my new life is only 10 years in the making. I had no idea what I wanted to be when I was ten! I knew what some of my desires were, some of the things I like and don't like. But I hadn't experimented enough, or explored my desires enough to even know what I wanted to do with my life. That took damn near twenty years to figure out!
I remember when it came close to time to graduating from college, I freaked out because I had no idea what to do after that. I had no idea where to go with my life. I even went to a professional counselor, because my panic over my future was starting with my ability to accomplish it in the present. It took years for me to figure out the dreams that have now been taken from me. And I had no limitations at the time!
This time, I'm trying to come up with the same big dreams, only now on "expert level." The only way I'm going to be able to accomplish that is by looking at what was taken from me, and changing my perception of it, so that the loss is in fact an opportunity.
I can't be a mother and know the joys of making a life and raising it in this world. But what opportunities do I gain because I don't have children? My "adopted nieces" are wonderful. But just like my illness, having those girls places limitations on my friend's life. She make take them in stride because it's all worth it...
So what if I looked at the limitations of my sickness and decided "it's all worth it"? What if I did that ahead of time, even though I don't know what that worth is yet? It's easy to see the worth in a child's life and to write off the personal costs and limitations. You know when you have children that the goal is to raise them so that they can then go on to live their own lives. That's even biologically driven. The outcome, hopefully, is your loving adult children. The outcome of my illness that makes all this suffering worth it... that outcome is a mystery.
Right now, I don't know what I want to even start to explore that mystery. But that's okay. This "second-hand life" is only 10. I didn't really start knowing what I wanted until I was around 15, and even that took a lot of experimenting and slogging through experiences I didn't like. I need to go out and find new things, explore, find new loves, new excitements, new spice to my life. I need to give it time.
Everything happens. If I want to bring reason to that, I've got to find a way to make it all worthwhile. My original dream would have made the stings and arrows all worthwhile. But that's the easy answer. What's harder to know is how to make it all worthwhile without that. I have to try...
The easiest way for me to forgive all that's happened to me, the way that I let go of the bitterness of not having the reasonable life I wanted, is by assuming I have been "called" to a more difficult life, but one that will ultimately be filled with glory that surpasses anything I could have hoped for. I have to assume that I don't get reasonable because, beyond my understanding, my talents would have been wasted if I had gone that route. And the voice was right... if there had been even the slimmest chance of me getting the life I wanted, it would have been mine.
So maybe a little faith in the Universe is a good idea... We'll see, right?
"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." ~Pericles
