I’ve been deep in it y’all. In my feelings. In the dark. In the angsty weeds. I’ve already had the mid-life crisis we’re all told to expect but this has been different. “You have a disease but don’t forget who you are.” It’s a popular trope in the chronic illness community implying that somehow somewhere the you that makes you you still exists even though you no longer have the use of your legs and must rely on others for everything from getting in and out of bed to wiping your damn ass.

I’m here to tell you that statement “don’t forget who you are,” is only part of the story. It’s more like, don’t prevent the evolution, the struggle and the inevitable confusion at the very most basic levels of identity. Who you are is now someone new and I’m gonna just say it, you’re still you sure. But you’re also someone new. And it might take awhile before you realize the transition you’re experiencing is more real than any other seismic change that’s happened in your life before getting hit with Sick with a capital S.

Fifty-seven years old and here again. At the beginning. Trying to divine who I am and what life is really about. Sick is big, y’all. Sick changes everything. I wanna be one of those “I have MS but MS doesn’t have me” people but I’d be lying. MS (and all that comes with having an atypical progressive and aggressive form of this snowflake disease) has me in its fist and squeezes harder, it seems, with every passing day.

Then you have a day where you breathe. You see the sun and feel the air. You get a shower given by another human and it’s somehow ok. You don’t feel like day old dog shit you just feel regular bad. Baseline bad, if you will, which in my world defines good. Chew on that will ya?

Anyway. For no good reason, I had a nice day today. I’m in my chair-bed feeling wide awake after a full day and I feel fine. I never feel fine. Maybe the light at the end of the tunnel turns out to indeed be yet another oncoming train. But on this day, I just see it as light. Maybe sunlight on a lovely, not humid summer day.

I haven’t forgotten who I am. But more and more I think of her as who I was. More and more I’m finding wonder in discovering how to make a life out of the mess of useless limbs and pain that has had my heart in darkness for what feels like an eternity but has actually been about two years. Two years since leaving my old home behind and forging ahead in this strange (if beautiful) new place.

Who I will be is more important to me now than who I was. Discovering this new person — that’s the journey. It’s just beginning. I’m both intrigued and scared to death. But there is light. I see glimmers. I try to deny it sometimes but the glimmers are without a doubt there.

Who will I become? I’m just a middle-aged caterpillar waiting to finally emerge. Sick. Very sick. But still here.

Still. Here.