And all through my brain, were thoughts most unwelcome that may drive me insane.

I in my pajamas worn for 27 days my aide in her scrubs, packed up my room full of dribs and drubs.

No. This isn’t working. I’m tired and it’s really hard to rhyme on the fly on your phone especially when the word to rhyme is “scrubs.”

I’m trying to be light hearted. I’m trying to be happy that I’m finally going home to a better situation, a more accessible life where I won’t be trapped and where daily life will be easier – but I can’t get beyond the simple truth that I’m only a tiny bit better than I was when I walked in the door here at Inpatient Rehab.

Small things are still hard. Very hard. I still need help to shower. Lots of help. I still occasionally get stuck in bed – just like a few minutes ago on the night before I’m being sent home. My body still hurts all over in weird places that cause more exhaustion and random stiffness. The balance between tone and weakness continues to elude me as my settings have been tweaked and tweaked until I’m not sure any of us think it makes sense to tweak them anymore.

My baclofen pump didn’t solve all of my problems like I stupidly thought it would. I have a new baseline and it’s a good bit lower than it was less than a year ago and I have to be somehow ok with that because it’s just reality.

I watched the people in the gym today. I watched them struggle. I watched them inch closer to recovery. I watched them stand up a few minutes longer or toss that bean bag into the container successfully. I thought about their recovery journey that I’ve been observing over these last 27 days, those teeny tiny steps back to usefulness, and realized I hated them because I was jealous.

What kind of person hates old sick people struggling to heal?

My recovery journey will never be one of teeny tiny forward motion that leads to a reasonable if less than ideal new normal.

My recovery journey will always be one step forward and ten steps back because my disease is chronic, relentless and a fucking dedicated bastard who wants me to give up.

My third time in the joint proved this to me. Comparing my three visits is like looking at the journey of three completely different sick women. This last woman was the sickest of all. She came back a bit, sure she did. She busted her ass working in therapy for three hours nearly every single day of the last 27 days. But she’s still struggling. She’s still in pain. She still has trouble doing very basic life shit. She is tired. So very tired.

And tomorrow she’s going home. To a house she’s never set foot in before that will make her life so much less difficult, most certainly, but it won’t cure her from this aggressive multiple sclerosis that seems intent on winning. MS is coming home with me, of course, to try its best to ruin this shiny little bit of hope that was trying to creep into my darkest thoughts just a few days ago.

Why is hope so hard for me?

Whilst giving me yet more shots of Botox in yet more parts of my painfully spasming body, I begged Franzi for a pep talk.

I had tears in my eyes. I was about to do that thing he hates – lose my shit right there in room T302 where there’s nothing he can do but watch in horror as I unravel. I have to tell you. He hit it out of the park. The man has a way. It’s an odd quiet way. A strange solid way. But it’s a way that works for me and I’m so grateful he exists. It would embarrass him if I said these things to his face, but I did tell him he was by far my favorite doctor and he seemed pleased. I also explained that I tended to dislike doctors intensely and he took that like a champ too.

Franzi reminded me of what it was like when I first got here. So did Rachel my OT. And Brian my PT. They reminded me that I could barely move 27 days ago. I needed help in and out of bed. I needed help on and off the toilet. I was solid immobile stone and moving me even a tiny bit took enormous effort from both them and me. I am mostly doing those things myself now. They’re not pretty. Or easy. But I’m doing them.

“We focus on keeping you going. Keeping you as well as you can be even with this disease that is so difficult,” he said. More or less. I’m paraphrasing but Franzi has good words for a non-writer.

I told him how it feels to me like The Great Scott has pretty much lost interest in me because my disease doesn’t provide him with the ability to do any great treatment or healing. Franzi explained that he began his training hoping to be a neurologist but quickly realized that he wanted more of a chance to help people be well – more than the chances that were available to neurologists in the late 80’s when treatments for major neurological conditions were scarce. Being a neurologist and watching people deal with chronic, degenerative diseases can’t be fun or easy. I get it. I still respect TGS. I really feel lucky to be his patient but I so wish he had a trick up his sleeve that will fix me and I’ve worked quite hard to prove to him that he lacks all said tricks. I sincerely believe he wishes he had such a trick too and that’s why I stymie him.

I wanted to go home better. Not better like I don’t have MS anymore better. Of course not like that but better than this. This mess I’m feeling tonight perched on the edge of my bed with a leg lifter hanging off of my right foot hoping I’ll be able to force it off the edge of the bed when I have to pee again. Pain burning in my neck and back from writing on this damn phone.

I realized something else while Franzi was poking my neck with needles that made the EMG machine crackle. It’s about my head. Not my body. It’s about getting my head right and it’s not right right at the moment. Not right at all. Not surprisingly, anxiousness like this turns me to stone no matter what my mother loving pump is set to deliver. I’m struggling physically tonight because I’m struggling emotionally. Because I’m so damn sad.

In another of our many conversations over the last 27 days Franzi described me thusly, “You’re not just a glass half empty person, you’re a crush the glass on the floor and get a big piece of broken glass sticking out of your foot person.”

Damn. He gets me.

So here I am. Bags packed. Ready to step foot (more like roll feet) into my new house that I truly hope will become a home. A haven. A safe place to live this new life where I need to be protected. I need to be protected from myself and my unruly, ungrateful thoughts. I need a place where a new life emerges from the broken pieces that are held together now with what feels like spit and scotch tape.

I envision lots of tears just like the ones falling now. I envision lots of weird feelings of being a stranger in a strange new land. I envision lots of anger and fear and rage at this latest new baseline and this continuing soul crushing effort just to stay in place.

But I’m going to try to envision other things too. Things like relative ease. And peace. Maybe even some glimmer of happiness.

I’m going to envision pulling that bloody piece of glass out of my stupid foot and refilling the glass to the brim. Or at least half way – we can’t be unrealistic.

Here’s an optimistic thought. I’m not actually going home with a hospital bed after all. Some kind of crazy miracle occurred and the elevation/sleep chair I bought that promised delivery in 8 weeks regardless of my sob story of being without a place to sleep in my new home. “We can’t promise you anything, ma’am. I’m so very sorry” actually showed up this past Saturday. Only three weeks after purchase. Whoever pulled that off for me? I’m incredibly grateful because fuck this hospital bed and the constant actual pain it produces in my left ass cheek.

I’m in awe of my constant good fortune. In the middle of the hottest of messes. I’m going to try and focus more on that.