We all have experienced, at least once in our lives, that moment when we wished we could go back. But we know we can’t – it’s impossible – so we grow out of that feeling, reason we weren’t as wise back then, search for the details that tell us things weren’t even that good, all in order to quiet that longing. We say, “My life is actually better now, you know, despite.” But with chronic illness? I’m not sure the process goes like this.
Lately I’ve been wanting, more than before, to go back to how things were before my diagnosis. When I was diagnosed I had a very let’s-move-forward attitude. I thought I was young and strong enough to deal with living with MS and I needed to focus on the changes ahead, not the past. This positivity went crumbling down months later when I found out my first treatment, Avonex, wasn’t doing anything besides giving me disabling side effects. There I was, for over half a year dealing with temperatures so high I had to stay in bed for almost two days every week – and for nothing, only to see new lesions accumulating on the MRI. Then I started Copaxone, with few side effects, and off I went looking ahead. But now, having been off any treatment for five months, just waiting for a hospital, any hospital, to approve a new medication, I just wish I could forget everything that has been going on. I wish I could go back to before December 2011.
It’s not the illness I want to escape. To be quite honest, I don’t remember anymore what it’s like to not live with fatigue or brain fog. They’ve been there for so long I can’t really go back to a place before. But I want to go back to not knowing I have MS. To not knowing there’s a name, a prognosis, medications, side effects, a list of over 80 symptoms. The truth shall set you free, but there’s also an awful lot of freedom in not knowing. There’s less fear and less insecurity. I thought fatigue and brain fog were consequences of my having trouble sleeping, so I went about my business without thinking twice about causes and consequences, without weighing carefully pros and cons. Now my life is so planned out my brain gets tired just by trying to avoid fatigue. Spontaneity is left out of the picture. I miss spontaneity. I miss going home thinking, “Well, that was unexpected. But so liberating.”
So, even though there’s no going back, I still wander about. I’ve been having dreams at night about the place I used to spend the summer at with my mother when I was a child. I dyed my hair dark like I did in 2011. I’ve been reconnecting with people I used to hang out more back then. I’m spending this weekend at my dad’s just like I did several times that summer. I’m trying to finish decorating my apartment, the one I spent the year before I hit that massive road block of a diagnosis furnishing. Wanting to go back when you have a chronic illness has a lot to do with identity. You know parts of you are being kept on hold. You know you changed. And you know you became a different person – but how different exactly? So you trace your steps, try to pick up the evidence and compare it to the clues you have now, try to smooth the edges with whatever softness and carelessness is still left from the old days, try to find shelter where once there was peace of mind.
Trying to find myself amidst chronic illness, in a body I don’t always understand like it’s something separate from me, waging a war against me, has been a disheartening task. I feel like I’ve been losing more pieces than finding them, because even if you go back to places and people, it’s just not the same as it once was. And as I get lost and lost, I get even more vulnerable. So vulnerable even an illusion of shelter will do.
And we know how bad illusions can hurt too.