Emergency Brake

The other night I dreamt that my car was speeding out of control.  I was sitting in the passenger seat. There was no one driving. I started panicking when I realized I didn’t have the physical strength to get over to the driver’s side. As I screamed, all I could think about was how I should have installed hand controls sooner.

It doesn’t take a psychoanalyst to interpret the meaning of that nightmare.

It’s been about 6 months since I’ve blogged- perhaps the longest break I’ve taken from writing. I’ve started many posts, only to abandon them midway. Though writing has always been therapeutic for me, it has also become increasingly triggering. 

To write is to officialize my reality-to let go of the fantasy of how I wish it were and forcibly accept how it actually is. I know my process well enough by now: when I publish a blog post, it means I’ve moved through yet another, if not many, cycles of grief. And so, I haven’t wanted  to write anymore. I’m tired of having to grieve. 

I’m tired of confronting my body’s continued deterioration.  I’m terrified of where it’s headed. The desperation feels unbearable. For the first time in 13 years, I’ve found myself “bargaining.” I promise I’ll be so grateful if I could just stay this disabled forever.  I’m tired of always working so hard to get comfortable with the discomfort, of having to work through my anger at not being able to participate in my life and that of my childrens’ in the ways I want to.  I feel like I’ve been a model mourner. I’ve adapted. I’ve learned to stay in the present. I’ve held onto my joy despite my pain. I’ve allowed for the hope that maybe a cure will come along before it’s “too late” for me. And yet, despite all of this hard work, there is no reward. Just more pain and loss. The cycle never stops. 

And so I must once again start saying my good-byes. I must accept that the struggles I have now- lifting my arms up to apply deodorant,  getting out of my beloved bathtub by myself, taking a tray of roasted potatoes out of the oven, bending down to pick something up off the floor- will sooner than later become cherished memories. I must find the courage to stare ahead at my future and plan for the next round of potential adaptations that are becoming increasingly visible and better defined-using a walker, getting a car that can accommodate a scooter, using the electric lift to get in and out of the pool. I must also find a way to keep making room for the happiness that used to come so much more easily to me. 

I can no longer refuse to accept that I have reached this stage of disease progression.  It’s a luxury that’s not afforded to me. I don’t get to be that irresponsible.It’s simply not safe.

Last week in therapy, I cried for the first 20 minutes of my session. I didn’t bother trying to speak. I knew the time had come- to surrender, to once again accept my complete lack of control over my body and it’s future. As I sat there, I thought about how, for so many years with this disease, I was so focused on the slowing down. But as I move closer toward the darker depths of disability, it feels as if I’m traveling at an increasingly faster speed and all I keep wishing for now is an emergency break.