Grieving The Self Of Yesterday

One of the hardest things about living with a chronic illness, particularly a degenerative one, is that you are always grieving for your older selves. As the years go by, ankylosing spondylitis steals a little bit of who you were before you got sick. One way of looking at this is through the lens of grief. And honestly, sometimes I think it’s OK to grieve. Grief is normal.

I simply couldn't sit here and tell you to look through a rose-colored lens, because how can we accept or reclaim our reality if we deny its many layers?

I grieve the loss of the self before sickness.

I always say that I am careful now. I’m anxious. I am more deliberate, less playful, less willing to take risks — both physically and emotionally. I have learned to dread the cost of going too hard or doing too much or throwing myself into something that I’m not ready for. I used to be ready for everything.

The cost is so often greater than the gain, and that pain and regret follow whenever I’m not calculated about what I do with my body. I hate that.

But the thing is, I still love my wild nights. I am not willing to give everything up. I still love to drink wine and dance and stay out too late and have weird conversations about life and love and dreams until all hours of the night. And even though I do it much less, I still do it. Because I still want to live. And I grieve for the transaction that now takes place—the push and pull of sickness.  I grieve for the self that I lost to the pain and fatigue.

It’s never just me these days. It's always me and my shadow, AS.

I often feel incredibly sad for people younger than me who have to grieve for the selves they’ve had to let go — or never had the chance to be. Even though I started developing symptoms of ankylosing spondylitis when I was in my mid-20s, I still felt as though I had a chance to be a wild creature before the disease really set in. I know 20-year-olds who are home, who wish they could go out and experience the world, but who are tending to immense chronic pain and immobility. It's unfair.

And yet, no matter how old we are, this disease has a way of getting in the way of those feelings and desires. It has a way of rerouting us, taking us to a different destination than we imagined.

Because of my grief, I choose to find the silver lining. Because of AS, I’ve cultivated a life of intentionality. My newfound carefulness is a reflection on how I’ve curated my life — a life that is beautiful and soft and kind and good. And the lessons I have learned along the way have made me more empathetic to others.

Living with a chronic disease means constantly dying and being reborn in new ways, meeting yourself over and over again. There’s some sort of beauty in that.

On the good days, I can see it. On the bad ones, well, it's a different story.