After the diagnosis

In the blog comments on Rethinking what you believe, a writer, Rebecca, says, “With the initial wound of the TSC [tuberous sclerosis complex] diagnosis still fresh for us, I have shied away from examining any belief. Because, frankly, anything I have ever believed about this world now seems a fallacy.”

When Jessica was born, I remember hating myself so much . . . thinking, How hard can it be to have a healthy child? Everyone I know has done it! It’s just not that fucking hard! I wanted to rip my skin off with my fingernails.

I hated a lot of things just then: the baby books that promised you everything would be all right, and the people who chirped Things happen for a reason! If it’s meant to be, your baby will live!

I wondered what kind of drugs they were on because I absolutely wanted to be hooked up with some. Just write the name of your supplier there, I wanted to say. Just give me the happy pills, so that I can pretend that there isn’t this huge rent in the story of my life that I haven’t got the first clue how to fix.

The huge rent became a canyon, a chasm, a thing I couldn’t cross: there were people on the other side, living and prospering, talking to me, inviting me over, and I had no idea what they were saying. I had no idea what world they were living in. I had no idea how to connect with them. I wasn’t sure I even wanted to. When that hole was torn in my soul, it shredded to pieces everything I understood about the world, everything I ever believed about love and truth and justice and the Meaning of Life.

There had been no God the Father for a long time, but now there was nothing. Just a great big cosmic raspberry blown in my direction. I didn’t believe some all-knowing being put Jessica on earth to teach me a lesson. Or her a lesson. What kind of sick fuck would do that? And why would I willingly believe in such a sick fuck?

For a long time I tried to make sense of it in less religious, dogmatic terms while still looking for some spiritual explanation. But the whole “universe-in-balance” thing never quite worked right for me. If you’re going to believe in some kind of universal intelligence, you may as well believe in god, and that brings you right back to what kind of sick fuck would run the joint like this.

Finally, I made peace with the fact that the universe is a lot more random than I would like it to be. That human life, and human effort, are subject to the whims of fortune in ways that scare us, and so we try to make meaning out of them. And that is how we come up with explanations like it was meant to be or it will all turn out okay in the end or we just aren’t wise enough to understand the grand design.

But those words are meaningless to me and have been for thirteen years. If you say to me, things happen for a reason, I will look at you as if you’re speaking Sanskrit. Because I don’t speak that language anymore. I can’t. I pretend, maybe, so that I don’t have to punch people for how callous and heartless they sound. But I don’t understand that language anymore.

My daughter got a raw deal. And there’s not a damn thing I can do about it or believe about it but this: her suffering, and mine, can destroy our lives if we let it. Or we can make it mean something. We can use it to build a bridge across that chasm.

I may never speak the language of things happen for a reason, but I can speak the language of my heart. I am sorry this happened to you.

I know how you feel.