Life on the inside, part deaux

So as most of you already know, I was rudely awakened at 3:45am with the arrival of my first roommate. One of only three such roommates I’ve ever had in my life who were not related to me in some way. 

It was rude. Bright lights. Outside voices asking about symptoms, the ins and outs of advanced directives, the ordering of snacks, the assemblage of various monitors and beeping apparatus. So. Yeah. No sleep again for this girl. My roomie is really nice. But now I have to hate her extra large because she’s getting out of here at 2pm. Today. Why?!? Why not ME?!? And yes. I am a bad person. But at least I admit it. 

I made some progress today, however. I posed what I thought was a perfectly logical and valid point to my neuro attending team. Why in the world would anyone give any human being a mega dose of Solumedrol at midnight? I mean, that practically ensures a sleepless night when sleepless nights are already likely based on my random self inflating bed with a motor located right under where my head lays each night. It’s like a water bed but with air. It gives me straight up motion sickness. But that is neither here nor there. Solumedrol at midnight! I’m no doctor. But that just seems like every kind of bad medical idea anyone’s ever had. 

The answer? Well. Because that’s what time the order went in. Oh. Right. That makes total sense then. 

My answer? So change the mother humping order you fools! I want my mega roids at 6am and 6pm. Period. There will be one day where I’m on a little extra roid juice, admittedly that’s not ideal. But want to know what’s an even worse idea? Getting pumped full of steroids and also expecting to sleep. Want to know what makes all MS symptoms worse? Two things. The horrible relentless heat. And, lack of proper rest. 

Proper rest tonight, in particular, is critical. 

Tomorrow I am being evaluated by the PT team. It’s up to them entirely whether or not I get released after my last Solumedrol infusion tomorrow at 6pm OR if they decide I am a danger to myself, they will keep me here until they can find me a room with an in-patient rehab unit. 

Oh. Hells no. Hell hell hell NO. I am not allowing that to happen. I’m adamantly opposed to in-patient anything after this debacle. No way. I’ll use my roid induced strength to stage a violent coup resulting in me wobble walking to the nearest exit and flagging me down a damn Uber. 

So I’m gonna take as many drugs as I can to help me sleep, even if I have to have family members sneak them in via body cavities, so I am well rested and not quite so wobbly tomorrow for my big test. I’m definitely doing better. I mean I can probably walk to the bathroom myself if they’d just let me. I haven’t thrown up in 24 hours at least. I’m practically an elite athlete right now in MS terms. Maybe ginger ale is some kind of magical life elixir and I just never knew about it before. 

I’m making up a new song. It’s by Beth Street and it’s called “No Wobbly” and it goes a little something like this…

I like the way you work it (no wobbly), girl ya got to walk it out. I like the way you work it (no wobbly) girl ya got to balance out. She’s got dirty hair rolling with the phatness. Solumedrol giving her the head fits. Street knowledge by the pound. Seen ’em close up with her face on the ground. But got to get her home stat so no wobbly’s where it’s at. 

My most sincere apologies to Blackstreet. But shorty’s got to get home before she loses her damn mind and Wobblies stand between me and that goal. All no wobbly vibes coming my way will be graciously accepted. 

I will not be an in-patient anywhere ever again as god is my witness. 

So I have to roll now. I have to plan this going away party for my roomie. Drink ALL the ginger ale. Load up on roids. (I was told I may require a xanax after my short term roid loading that has to happen today to get me on my new schedule. That should be interesting.)

And tonight is turkey dinner. I mean who’s really winning here? Turkeys are great walkers! It’s gotta be a good sign. 


Sing it with me, folks. The puffy village is calling my name and I must get back to my precious before I go all Gollum on some PT hobbits tomorrow. 

The new Mr. Costanza

This isn’t a picture of Mr. Costanza. But I imagine where ever he is now, he is doing something like this.

Mr. Constanza lived on my street since the day I moved in, about three houses up on the same side of the street.

He and his wife, Mrs. Constanza, were pretty much a fixture on Virginia Avenue, him because he was always out walking around. Up and down the street, in his rumpled beige zip up jacket in the spring and fall, heavier black jacket and plaid scarf in the winter months, head down, walking so slowly it almost looked like he wasn’t even moving at all. But there he was. In the morning when I left the house for work, he’d already be on his way down Virginia Avenue in his super-slow mode, looking like he had everywhere and nowhere to be at the very same time. In the evening when I got home, he’d be coming back up the street toward his house, with Mrs. Constanza sitting on the porch, smiling, her crinkly face sitting atop her perennial black cardigan, over the faded print house dress, the uniform of old Italian ladies the world over. I had no idea how long he’d been out. If he actually went anywhere. If he came home to rest or if he was literally out walking around all day long.

Mr. Costanza used to mutter hello, ask me how I was doing, mention the weather or the latest happening on the street in his broken English, always with a half smile on his face (not a full smile) like he was grateful to you for putting up with his ineffective American talk, after so many years in this country. Mr. Costanza made his own wine, like lots of old Italian guys do, in his garage behind his house. He told me about it one day on his daily constitutional, and told me, “My wine. Is good to drink. You try it sometime when it’s ready. I come get you.” And off he’d go in super slow mo, back down the street like it was his job to be on patrol and he wasn’t the kind of guy who shirks his responsibilities.

One year, it might have been the time of the neighborhood Memorial Day parade when the streets were filled with families setting up lawn chairs on our sidewalks to watch the parade go by on our perfectly situated street and my neighbors across the street at that time, Jon and Rochelle, were over at my house chatting it up with me while we all waited for the parade. It was kind of a neighborhood tradition on parade day.

Mr. Costanza didn’t let the parade stop his daily patrol. But on that one day he stopped to chat with Jon, Rochelle and me, he invited us to his garage to try the wine because it was finally ready! “You come taste.” So, we followed him back to his garage where he had quite the set up of barrels and tubes and such, and he poured us each a glass in a small juice glass, as old Italians tend to do when serving their homemade hooch from the garage winery. We all said, “Salud!” and downed our dark purple liquid. We felt like we’d been given some amazing honor that day, actually trying the wine on that Memorial Day parade day, Mrs. Costanza sat on the porch and smiled and nodded at us as we walked by. “She don’t talk too good,” he explained. But we already knew that.

Until the day he died, I saw Mr. Costanza on his daily constitutionals and I always wondered how he never got bored or tired or just over the whole thing. The same neighborhood. The same houses. The same trees and alley cats and kids on bikes everywhere. I never asked him because that just seemed like a silly thing to ask a guy like Mr. Costanza. In my head, the imagined response he would give me would be something like, “Eh, because what else would I do? Sit around? I like the walk.” Or something simple and obvious like that. After he was gone, I missed seeing him on his daily journey. I also eventually missed seeing his smiling wife in her old-Italian-widow-before-her-time uniform once she also went to be with her ever-walking partner in life for all of eternity.

The Costanzas came to mind for me today because I did something I almost never do. Actually, I did a few things I usually never do and the first of them was to make a New Year’s resolution. I know. Resolutions are doomed to fail. I get it. That’s why I never make them and why I think they are generally overrated and self-defeating and all things hopeless and rather silly.

But here I am. A year after my diagnosis, feeling like life is changing faster than I can keep up with it, while all at the same time slowing down to a screeching grinding halt, with me sitting here looking at it all wondering how that is even possible to have those things happen simultaneously. I feel like what I’m doing, how I’m dealing or managing or whatever you want to call it (or generally waiting for something to feel normal or better or OK), is obviously not working. Something has to give. I’m getting to a point where I feel sad and hopeless more of the time than not and if you know me at all, you know that I have an almost physical repulsion for those feelings when they go on for too long. Enough is enough.

My resolution is so small and simple that it’s almost embarrassing to write it down or make some declaration about it, but today I decided that I need to make small changes to help myself feel better, even if it’s only a tiny bit better, even if it doesn’t really change much at all but my brain and how it works.

I decided that I will go outside every single day and walk for at least ten minutes. I won’t force myself to go far. I won’t force myself to go fast (as if those things are even an option!) but I will go slow, and walk funny and probably not get very far at all, but I will go. I will walk for at least ten minutes every single day.

Pathetic, I know. But you have no idea how enormous this is to me. Just stepping outside of my door and not walking directly to my car feels odd to me. It was cold today and windy and I probably should have worn a hat. But I did my little walk. And then I came home, had my breakfast (yes, it was 2:30PM, but whatever). I felt…better.

I’m picking up Mr. Costanza’s mantle and I’m going to be that lady. You know the one. She’s usually by herself. She walks funny. She barely makes it to Freeport Road before she simply turns around and heads back the way she came. She is always dressed in black (right down to her sneakers). She has that insane hair that always looks like she’s just been scared to death by something or like she just rolled out of bed (both could be true lately). She walks funny without anywhere to go and doesn’t get very far. But she walks.

Maybe she will start making her own wine in her garage some day, too.