There’s a potential discharge date on the horizon and I wish I could adequately explain the degree of anxiety it has created in me.

It’s what I’ve wished for since being admitted on June 28. June 28. Holy mother of Jehovah. June 28. I’ve been here so long it’s almost unbelievable to me and I’ve been living it.

I remember this feeling from round one when I was also in the joint for a month. The feeling of wanting to jump out of my very skin. The feeling that I’ve somehow always been here and maybe I somehow always will be now. The feeling of being utterly alone as Covid has limited my ability to have physical visitors because of both hospital rules and the willingness of some of my friends and family to risk coming here right now as our area experiences a surge in Corona virus cases. I certainly don’t blame anyone. I wouldn’t be here either if I had a choice.

I do not have a choice and maybe that’s the hardest thing for me to deal with, even harder than having a messed up body that can’t seem to decide if it prefers being floppy or stiff.

Weekends here have always been brutal. I didn’t have therapy today so I had no reason to leave my room and not a thing to do. I did my best to be as “active” as one can be when one is prohibited from walking on one’s own and believe me when I tell you, I was barely functional. I stood for about 45 minutes throughout the day. Probably peed 15 times. Put on day clothes instead of sticking with my pajamas. It was something to do. Much like my skincare routine that I perform twice a day entirely unnecessarily because I haven’t been outside in a month. How could my face be dirty?

Weekends here work on your sanity so much so that Franzi decided to medicate me this weekend to help with the off the charts degree of anxiety I’m experiencing. This feels like failure, I won’t lie, but I’m not sure why. It also feels like survival – plain and simple. How can a person not be anxious when stuck in a hospital room all damn day with not a single thing to do?

I’ve watched HGTV until my eyes are glazed. I can’t concentrate well enough to read. All I can think about is how I’m wasting precious days without getting a physical therapist’s opinion on my latest pump setting.

They’re talking about sending me home on Wednesday and I’m both thrilled and horrified. I remember what it was like the first time when I found myself back home again after a month in the joint. It felt like being set down on another planet but a planet that only looked familiar but felt dangerous and a tad sinister. I don’t relish experiencing that feeling again. But I also can hardly bear to be here one more day, therein lies the rub.

There were a few notable happenings this week here at inpatient rehab. I lost my shit a few times, not surprising, but chanced upon some wisdom from my care team friends. Like Shay who said to me, “Don’t be the pop bottle. What happens when you shake up a bottle of pop? It explodes baby. It explodes. Be the water bottle. Shake it up and just let it settle back where it wants to be.” Shay is 32 years old. Way too young to be so wise. I miss her when she’s not here.

I struggled to get through the week of therapy while I was so weak myself. My pump settings were adjusted daily trying to get me down to a good balance of not too weak and not too stiff. I think we’re close but the back and forth nature of the adjustment process is part of what’s driving my anxiety. At my last adjustment on Friday, I plead with Franzi to try and get me therapy this weekend. “How will we know if the setting is ok?” I whined with the wild saucer eyes of a junkie. “We’re running out of time. I need to be better.”

As I was saying these things to him with an intensity in my voice completely outside of my control, I was twisting a lump of hot pink putty. The OT team left it in my room so I could work on my right hand strength in my off time. There are 15 tiny plastic beads buried in the putty. I find them over and over again. Then I replace each one back into the putty and I roll it and massage it and twist it to hide those beads as if it was going to be someone other than me looking for them next. Franzi watched me twisting the putty with my crazy eyes. “I’m going to get you something for your anxiety this weekend. I think it will help.” Ya think Doc?

Then he held out the little plastic disc from the pump adjuster machine and handed it to me to hold against my belly. Once we were connected he started singing. First it was more of a hum. “I didn’t know you had musical talent Dr. Franz.” And then he gave up the humming and was singing that old Bobby McFerrin song “Don’t Worry Be Happy.” Then before I knew it, I was singing too. It was weird. And also totally normal. This is an alternate universe, without doubt.

Yesterday in the OT gym there was a small plastic container that had wriggling little brown worms in it. They looks like grubs. Turns out they are caterpillars. The OT team is cultivating butterflies. They had a mesh habitat ready for the cocoons once the caterpillars got themselves all ready for their new lives. I asked them what they were for, like usually everything in the gym has a purpose. Something for people to do to distract them from the fact that they’re standing up for a long time on very shaky legs, for example, little tricks they play to keep us from focusing on how tired we are. But the caterpillars are kind of just because. Because the OT team like them. I kind of liked the idea myself.

I learned to navigate around a kitchen in a wheelchair. Made the therapists some cookies. It all feels so silly. Like kindergarten for injured and chronically ill grown ups but the whole team here takes the job of proving us capable of living some kind of life we thought we’d left behind that you almost can’t blame them for their silly games and enthusiasm. They want us to be well. Their optimism is infectious. Their thrill at each little accomplishment makes me let the little silly games slide.

I was measured for a wheelchair. A real wheelchair made just for me. I feel actual excitement about it. I don’t even know what to say about that but there you have it. I’ve gotten really good at the little obstacle course/scavenger hunt games we play where I have to wheel around the various gyms and find the colorful clips or the red solo cups hidden in the kitchen cabinets. This would have annoyed the shit out of me during my last stint at inpatient rehab but now I’m kind of all in. Give me that fucking chair and I will find your colorful clips and I will beat my time from the last run.

Who is this person?

I have a new neighbor next door in 5. She’s an older woman and she is not happy about the wheelchair belt alarm things they make most patients wear while in residence here. I’m exempt from the alarm because I have what’s called independent status. That means I’m allowed to stand up to move my legs around. I’m allowed to do things myself like get out of bed to use the bathroom 37 times a day. I fought the wheelchair and bed alarms during my first stay but I was stupid. I needed that alarm. I was too stubborn then to admit it but between the wheelchair alarm and the bed alarm that goes off if you try to get up unassisted it grated on my nerves as if someone had actually tied me to the bed with scratchy rope. It made me feel like a child.

So last night after my neighbor in five had set off both her wheelchair alarm and her bed alarm at fifteen minute intervals throughout the night I resisted the urge to wheel my independent self over there, introduce myself and beg her to please sit the hell down and be a good girl. It’s not hard to remember how much it sucked when it was me who had to have all of those safety alarms set. Now when she wheels past my door I send her silent grace and hope she stops resisting sooner than I did but knowing I will forgive her tonight when alarmpalooza kicks off sometime around midnight.

I’m hoping for a day tomorrow where I get at least an hour of PT. I can’t decide if my current pump settings are too high or too low. I need my physical therapist Bethany to weigh in. We don’t have much more time together. And I’m not responsible for my actions if I have to spend another full day in this room all by myself. Stand up. Sit down. Get dressed. Go pee. Sit down. Stand up. Go pee. Sit down. Stare out the window. Sit down. Go pee. It’s maddening. Inpatient rehab without the rehab is some kind of rare torture.

So tonight I’m gonna take my anxiety meds. Watch something good on my computer. And hope tomorrow gets me out of this god forsaken room. But if I don’t get out, I’m going to try to be graceful about my lack of alarms and the fact that it’s probably only three more days until I’m home again, with my cat Fred, all freaked out that there aren’t helpers at my beck and call 24/7 in my comfy bed with the fancy sheets but without the adjustable buttons that make it ever so simple to get up and down safely.

Another readjustment will begin. And then there are even more coming after that once I prepare for moving. I hope Franzi sends me home with those anxiety meds. They’re probably gonna come in handy.