Today I turn 35 years old.
Most of what I have accomplished in my life is immeasurable, intangible, and invisible.
But I have fought hard for the unseen things. And I often feel that because you can’t see or measure my accomplishments, that they don’t count.
That I don’t count.
But here I am. Fumbling for joy through raw grief and brought to my knees by something no one can see, most don’t understand, and some don’t believe. Every day is full of things that invalidate the burden of illness I have somehow managed to drag doggedly my whole adult life.
Try for a minute to imagine what it is like to replace all of your efforts towards a dream or a goal with the effort to shower or prepare a meal. And that these efforts take days to recover from. The dreams and goals are now, “Can I take out the trash today too? Will I be able to sort the mail? I guess I’ll have to wait a few days to do dishes. Maybe if I rest tomorrow.”
I am trying to honor my grief but not make it my home. Trying to find peace with what is and still maintain hope. Trying to forgive myself for not being able to push through. Trying again to make something beautiful out of the impossible.
I am still here.
I live here. This is not me passing through on my way to somewhere “better”. This isn’t a dark chapter. This is my book. And I don’t want to spend the rest of my story mourning the book I didn’t write. Couldn’t write.
I watch others in my life achieve things, attend things, simply “be” among friends and peers, execute plans and talents. I confess, years ago, I used to be jealous. And angry at the world, or God, for taking that all away from me. Now I feel joy. I am grateful to see your joy. I am happy to see you enrich yourself and live your life fully. The world my daughter will inherit begs you to.
But I also feel grief, too. The grief has transformed over the years. It is stronger now, but more forgiving. It has an awesome power which commands me to transform. It is graceful and brave and tough. It has taught me more about life than perhaps anything else. And that is by choice. I did that.
We all have different talents and pursuits. I often feel my diseases have suffocated my gifts inside of me. I don’t believe I am the best at anything, but I have always indelibly known I had things I could do, in only the way that I could do them, to contribute in some way to the world. My heart aches to expand through the efforts of a fully functioning physical body.
A friend told me the other day I had faced “the veil”, after I described my hospitalization this summer. Which is to say, I saw that I could die, a moment you cannot prepare for or escape, and I said no. Even though I was so paralyzed I had to be catheterized and lifted and moved around awkwardly like a doll, even though I could barely speak or breathe, even in absolute terror after I collapsed from attempting to climb one stair, I said no. I did that.
Now more than ever I want to share what I have seen. What I have learned. I want to change the way the world views sick people and disabilities. I want the world to understand that we have value just as we are. That our accomplishments and power are visible, if you know where to look. How to listen. We are worthy of validation and love and have so much to give.
We are not invisible. We are just unseen.
There is a big difference.
I am still here. And I am counting myself.
I did that.