My arm is still killing me. My legs still refuse to cooperate. And the whole world seems to have gone insane. Seems like the perfect time to write a new post.

Recovery continues but it’s going so slowly that it’s hard to feel like there’s any recovery going on at all. In the midst of the Coronavirus, I’m having home healthcare workers coming into my house five days a week. I made the decision to be super careful but to also move ahead with my OT/PT recovery and I can’t be sure if it’s the right decision but it’s the only decision for me. Many people, including some in my own family, think I’m being reckless. Maybe I am. But there is no other way forward for me right now when I’m so incredibly broken.

It’s funny, really when you step back and think about it – how badly I wanted out of the hospital. How much I declared that I was ready and couldn’t bear one more minute in that place, now that I’m home? You guessed it. I miss it.

I miss Caitlyn who was the nurse who felt more like a friend, but a friend who was looking out for me with actual medical training and who immediately made me feel safe the minute she rolled into my room with her WOW. I still don’t know what WOW stands for but it’s the rolling computerized care station that held my meds and all of my important info. Caitlyn wasn’t my only nurse but she was the first one I connected with in a meaningful way and I miss the shit out of her. She helped me understand things when I felt panicked, alone and afraid. We laughed at the ridiculousness of my helplessness. When I went rolling around my palatial hospital room in the world’s worst manual wheelchair, she dubbed me Dora the Explorer. By the time I was discharged I felt like I was leaving family behind. I wanted to ask for her number or email or something! But it felt like an unspoken rule that it’s just not something you do. I’m sure I wasn’t the only patient who left West Penn Inpatient Rehab wanting Caitlyn’s number. I guess when you’re a caregiver for a living you have to maintain boundaries and that makes total sense to me but I think about her almost every time I’m scared. And now that I’m home, I’m scared a lot. Nurses are angels in scrubs.

There was Brenda Lee who shared my birthday and told me the story of why she plays our birthday number on the daily lottery every year. She had been living with a guy who she “had no business giving the time of day to,” and on her birthday one year he left her, but he didn’t just leave her he took her rent money to add insult to injury. Now she wasn’t just broken hearted, she was broke. She had like twelve dollars in her pocket when she got home on her birthday to find this mess. She needed a few things at the corner store, so after raging and crying bit she dusted herself off and headed out. Before leaving the store, she noticed the lottery machine and had a weird feeling. She’d never played the lottery before but she threw caution to the wind and used her last remaining money to play her birthday. She went home with no money in her pocket, a broken heart and a lottery ticket that seemed ridiculous to her in hindsight. Those few dollars might have been better spent. She felt silly. And sad and panicked about the rent that was due in three days’ time.

Then she hit the number and had her rent covered and her heart full. She didn’t need that loser. She was Brenda Lee dammit and she deserved so much more. She’s played our birthday every year since on the day before, the day of and the day after. That story made being in the hospital on my birthday feel less horrible.

There were other nurse’s too that I loved. Lee with her beautiful face, brightly colored head wraps and fantastic eyeglass frames. Grace, a tiny Philipino woman who was about 30 weeks pregnant who took her mothering VERY seriously and made me feel like a little girl again. I even got used to her annoying habit of putting my bed alarm on (the damn thing played Mary Had a Little Lamb in digital tones and I swear it will haunt me to the day I die). She just wanted me to be safe – even after I got more independent and some others would leave the alarm off. Katie had a bedpan method that helped me not to end up swimming in pee during the time when I was too weak to use even a bedside potty because you guys know I pee a LOT. She told me how she noted it in my chart so others could use it and help prevent accidents. Most people did it. Some didn’t. Those weren’t good nights. Russell was a nice guy and probably a good nurse but he made me pee on myself three nights in a row because he refused to use the Katie method.

There was Tyler, the nurse’s aide whose face lit up my room the minute he walked in. His smile made ME smile, even as he was watching me go to the bathroom which I have to tell you is a really weird way to bond with another human, but after month in the hospital, it would appear that I am out of fucks and modesty. I wasn’t allowed to do anything without a witness. I couldn’t get out of bed without setting off alarms. My only approved seat that wasn’t my bed was a manual wheelchair. Tyler helped me into bed, out of bed, to the bathroom, back from the bathroom, when I needed my butt massaged with my handy massage gun (from sitting so much) he did it and he thought it was fun. He sang when I woke up in the morning and helped me with just about everything. He shared pictures with me of his adorable baby. If I could have taken Tyler home with me I would have. His presence was calming and his touch reassuring. How could a twenty-something year old kid calm me like that? It was like the kid had a magic power.

Tyler wasn’t the only aide in my month-long stay. Most of them were amazing. Eric, Erica, Shaye, Linda, Darian, Bria, Michael – and so many others. The care these folks put into my care kind of took my breath away. That level of dedication to helping other humans is rare and they don’t get enough credit for the incredible things they do – which are both tiny things and giant things and they do them because they truly feel a calling for helping people. It blew my mind a little. Maybe I’m jaded but the experience really blew my mind.

The doc who adjusted my pump became my favorite doc in the lineup. Dr. Franz. Franzie to me. He taught me the difference between tone, weakness and spasticity. He worked with me to get my pump to a good place while simultaneously weaning me off of a mountain of oral muscle relaxer meds. He told me that my pump would probably not need refilling until late June but if the medicine gets low, it will chirp. My abdomen is gonna chirp y’all! How crazy is that? I’ll be seeing him in a week or so for a follow up. I’ve decided to transfer my spasticity care from Dr. Liang to Franzie’s practice. We just clicked. And his practice is closer to home.

Franzie was the headmaster of sorts for the amazing therapy team I worked with at West Penn. I honestly can’t say enough about the talent there and the level of care. I’m kind of a pain in the ass and when I’d bust Stephanie, my OT’s, balls about why the hell she’d keep making me walk sideways over and over again when I’d never really ever do that much side stepping in real life, she’d just laugh. Now that I’m home, I want to call Steph and tell her that I walk sideways at home all the damn time! I was such a jerk! Steph was a student and her mentor was Alex. Alex was awesome too. After insisting I hated games of all kinds, we had a Jenga tournament that I still think of and laugh. I learned how to toss bean bags through a board with holes in it even though I thought it was dumb but it was really helping me build core strength. I miss them.

On the PT side, Mary Rachel was my girl. When she put her hand on my back of held me up by the waist of my yoga pants (giving me the ever-reliable PT wedgie) I felt secure. She encouraged me and refused to let allow me to belittle my progress. It felt like I’d never get my legs up the PT steps but one day I did and the euphoria of getting my leg up on a step on a Friday afternoon blew my mind. Literal euphoria. I’m not sure I’ve ever felt that feeling before. I remember crying that night and thinking, “I had an amazing day and I can’t stop crying. How is this happening?”

The others in the PT gym, patients and therapists were like a weird little family. Joe, the smiling therapist brightened even the darkest of my moods. Other patients, from tiny little Veronica who looked so frail but could walk faster and further than I could. Tim who had a best of three game of standing Jenga with me that made me belly laugh. He also gave me a dose of perspective when he told me he had been there in rehab since January 4. That sobered me up pretty quick and made me feel like a spoiled brat.

Nighttime was the worst time. I thought weekends were the worst time because they were therapy free and just boring and long and left me too much in my head, but it is definitely a toss-up as to which was worse. At night, I was afraid to go to sleep for fear of what I’d feel like when I woke up. Just like it was when I was at home but just not at home, so somehow even worse. But there were people there who helped me. Took care of me. But it just didn’t feel right some of the time. It felt lonely.

I had conflicting emotions like how comfortable I can be in solitude scares me and how uncomfortable I can be in solitude scares me almost as much. Back before my diagnosis, I used to think my feelings were real but now I realize that most of the time they were me acting the way I thought the feeling should look. I felt my feelings back then but in hindsight I can see that I was acting, being somehow very authentically inauthentic. In rehab, my feelings suddenly became very real to me. There was nobody to perform for. They overwhelmed me. They hurt me. All of the sudden things seemed so clear and also so complicated simultaneously. I think that’s how real feelings operate. It amazed me to have this realization at 53 years old lying in a hospital bed with nobody to perform for.

And now I’m home and feeling something I never thought I’d ever feel. I miss being in the hospital.

At home, my mom has to do what all of those people at the hospital were doing. And now with the Cornona virus madness we’re pretty much roommates seeing as we’re both in high risk populations. She’s 80 and she’s waiting on me hand and foot. She helped me shower for the first time today and it made me feel like a kid again. She is an angel here in earth who I literally couldn’t live without right now. I’m overwhelmed by how lucky I am. By how much you can love another human.

So now I’m home, feeling all fragile and pathetic and afraid that I’ll always feel this way. Worrying that I might be allowing germs into my home every time a therapist comes into my house but brushing it off because I have no choice. I will not stop my work of coming back. As weak as I feel every single day, I have to come back. Maybe by the time the world is ready to start turning again without so much fear, I’ll be ready to go out into it again without so much fear. I’m going to focus on that.