I’ve written a great deal about my dedication to therapy. In fact I don’t know how anyone gets by in life without the help of a great psychologist. In my early MS years my pre-disease self had my precious Cheryl who I saw faithfully once a week for that  wondrous hour sitting in her dark room, Cheryl dressed in her comfy soft pants, mock T and sweater sitting in her worn chair ready to listen and help me make sense of everything from my early young widow years to my early days of my MS diagnosis. Crazy thing was that Cheryl also had MS unbeknown to me when I started seeing her. Her wisdom was invaluable to me. It wouldn’t be an overstatement to say that Cheryl saved my life more than a few times thanks to that precious hour in that wonderfully darkish room. These days I have Dr. KB who I see virtually every Wednesday at 3PM. Even though it’s a virtual appointment it’s no less sacred to me. That hour on a Facetime window brings me back to Cheryl’s darkish room. I treasure it.

These days Dr. KB is helping me navigate life post-major hospitalization where I seem to be struggling with the basic realities of my disabled life – things I thought I’d long ago accepted by working through therapy using radical acceptance as my tool. I thought I’d long ago gotten used to the fundamental reality that I require 24/7 care from people called caregivers. I’d worked through the basic frustration that results from needing another human to get through a regular day. My days are so simple now! All I need is help with some basic needs like using my sit-to-stand lift to ambulate from sleeping chair to toilet to wheelchair in front of my computer to my TV watching chair and then reverse it all at day’s end. I suppose it is a tedious job but it’s pretty basic. When you sign up to be a caregiver you pretty much know what you’re signing up for.

And yet so much of my life is spent waiting for help it’s maddening. Nothing, and I do mean nothing happens for me when I want it to. I feel so blocked by my inability to do the most basic things myself that this constant waiting threatens to drive me mad. The simplest of tasks requires a wait. I try to cultivate patience and grace telling myself that nobody is going to die if I don’t have my drink filled or my cup of ice replenished but it eludes me. The waiting to transfer from chair to chair is the waiting I hate the most. I want so badly to be able to simply get up and walk to the bathroom all by myself! I don’t want to use a machine to transfer. I tell myself to be grateful that I have a lift at all. To be grateful that I have this lovely house full of beautiful art, this awesome computer, these wonderful people called caregivers who are paid to help me to merely exist – to be grateful for all of it. And yet. And yet here I sit feeling all the feels about the value of my disabled existence haunting me, keeping my mind from reaching peace.

Dr. KB helped me to understand that these experiences of hospitalization keep rubberbanding me back and forth dealing with the grief that results from Able Me being pushed so far away pushing me into the reality of the world of Disabled Me where I don’t want to be. Every little bit of acceptance I achieve is pulled back by the grief of a hospitalization or the grief that results from being left alone without care for a full 24 hours which is also something that happened to me in the last two weeks. Every bit of progress is thwarted by a new episode where Disabled Me is forced to live in the world where she is so vulnerable. I can’t pretend to be ok when I’m left to my own devices or when sitting in a hospital bed.

In therapy, we’re exploring how I try to sabotage my own progress. In therapy we’re exploring the voices that speak to me harshly in my head the ones who question the value of my life sitting behind the computer writing or doing crosswords. The voices that refuse to allow me to just let go and enjoy this simpler kind of life that I have here at the Hidden Falls Home for the Sick and Disabled. The voices I try to squash. Dr. KB has explained to me that I can’t kill the parts of me that try to hold me back. She’s helped me to see that I need to invite the parts of me to the table to talk. To feel accepted. To feel hard. She’s helped me to see that the parts play a role. They’re all parts of me so they’re all important. As much as I want to ignore them they will be heard. And in therapy we will listen to them together so I don’t have to navigate the waters by myself. She sent me transcripts of my session so I can read them in between and learn again what we talked about so that becomes solid in my brain. It’s all part of the work. And I’m dedicated to doing the work.

I just want to be OK with my disabled life. I just want to accept it. When I can get there life will be good and I can stop beating myself up for not being enough. That’s what I’m learning how to do. Wish me luck.