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\u2019t have the physical strength to get over to the driver\u2019s side. As I screamed, all I could think about was how I should have installed hand controls sooner.<\/p>\n
It doesn\u2019t take a psychoanalyst to interpret the meaning of that nightmare.<\/p>\n
It\u2019s been about 6 months since I\u2019ve blogged- perhaps the longest break I\u2019ve taken from writing. I\u2019ve started many posts, only to abandon them midway. Though writing has always been therapeutic for me, it has also become increasingly triggering. <\/p>\n
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\u2019ve moved through yet another, if not many, cycles of grief. And so, I haven\u2019t wanted to write anymore. I\u2019m tired of having to grieve. <\/p>\n
I\u2019m tired of confronting my body\u2019s continued deterioration. I\u2019m terrified of where it\u2019s headed. The desperation feels unbearable. For the first time in 13 years, I\u2019ve found myself \u201cbargaining.\u201d I promise I\u2019ll be so grateful if I could just stay this disabled forever<\/em>. I\u2019m 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\u2019 in the ways I want to. I feel like I\u2019ve been a model mourner. I\u2019ve adapted. I\u2019ve learned to stay in the present. I\u2019ve held onto my joy despite my pain. I\u2019ve allowed for the hope that maybe a cure will come along before it\u2019s \u201ctoo late\u201d for me. And yet, despite all of this hard work, there is no reward. Just more pain and loss. The cycle never stops. <\/p>\n 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. <\/p>\n I can no longer refuse to accept that I have reached this stage of disease progression. It\u2019s a luxury that\u2019s not afforded to me. I don\u2019t get to be that irresponsible.It\u2019s simply not safe.<\/p>\n Last week in therapy, I cried for the first 20 minutes of my session. I didn\u2019t 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\u2019s 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\u2019m traveling at an increasingly faster speed and all I keep wishing for now is an emergency break. <\/p>\n","protected":false},"excerpt":{"rendered":" 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\u2019t have the physical strength to get over to the driver\u2019s side. As I screamed, all I could think about was how I<\/p>\n