It’s a complicated time for all of us, or so every commercial I see on television tells me. Nobody really knows what day it is half the time and the degree of stir-crazy among the normals is off the charts.

I see it in my social media and in my inbox. I want to give them tips and tricks from the chronics (us with chronic illness, for short) who are frankly quite expert at living in the upside down world where nothing really makes sense but that list is quite short and mostly includes things like getting used to and enjoying the contents of you own mind and realizing that all of life isn’t actually about the go-go-go we’ve been brainwashed into thinking is the best way to live. But those are pretty existential notions that don’t fit nicely into sound bites or blog post listicles so I mostly just tell them that things will get better some day and we all just have to be patient and safe. Annoying advice, I realize. It even annoys me.

It hits me over and over again, as I sometimes also forget where I am and what the hell I’m doing – that thing about how trained I’ve been for most of my life to pursue success (whatever that means) and ever more impressive salary levels to the point where I define my actual worth as a human on the basis of what I can do. How much money I can make, how many letters I could get in front of my work title that prove to other people like me how important and smart I am.

Now that my job isn’t my job (temporarily of course) and my actual job has become putting 100% of all available energy into getting my broken body stronger and more specifically getting my limbs to cooperate in such a way that I can get myself up and down four cement steps that stand between me and the rest of the world, I also lose my way. I have four days a week of physical and occupational therapy which is my personal version of in-home personal training. I get my ass kicked for an hour – upper body, standing, endurance, squats, stepping, lifting and pulling until I have just enough energy to eat my dinner and drag myself to my bed to just sit there in a semi-comatose state hoping my legs will actually carry me to the bathroom when I will inevitably will have to go at least four times while trying to distract myself with some show on TV before I finally go to sleep. Sometimes I need help to get into the bed, but lately I’ve been doing it all by myself like a big girl so I try to find the grace to be proud of myself.

It makes me remember that time in my over-achieving life of yore when I worked out at an actual gym with an actual trainer for several years. I mean, I had never been a member of a gym in my life. I hate working out. I am not outdoorsy or athletic in any way so running and the like was never for me. But I had this outdoorsy athlete type of boyfriend at the time who kept at me to try new things and so I did. That’s how I ended up at a gym in the first place (sadly) but then it bit me – the bug to constantly attempt to reshape myself into some more acceptable form by pushing my body to do things I’d never wanted to do before. The boyfriend didn’t last (praise be) but my gym habit somehow did. I even went so far as to hire a personal trainer. My trainer, Matt, was key to my ability to motivate myself to get there to do the work much like my “trainers” today – my PT and OT friends – are key to my current ability to motivate myself to do the work now. Matt became a friend over time and I loved our time at the gym even when I thought he might be trying to kill me.

I remember him putting me at the top of the dark stairwell at the back of the gym with ten-pound weights in each hand, instructing me to go down the three flights and then back up two steps at a time. Or the walking squats in the corridor from hell where he’d stand at the other end and tell me I could do it (I didn’t think I could do it…in fact I was usually quite positive I couldn’t). He’d look at me and say, “OK, I get it, but let’s just do one and then we’ll see how it goes.” He was sneaky that way, that Matt, but I’ll be goddamned if it didn’t work every time. I’d do one and one turned into ten and ten turned into twenty.

Before I knew it, I was one of them. I fit in. I had my routine, my favorite locker and my perfectly packed gym bag. I had funny nicknames for the other gym rats who spent as much time as I did at that place. Like Towel Sucker – the guy who sucked on his gym towel while walking up the steps on the stair climber machine for hours on end. Or Hairy Back guy who spent his time at the elliptical next to mine with a thick gold chain entwined in his body hair. The there was Lucy at the gym, from the Jill Sobule song of the same title, who was at the gym no matter what time I went be it 5AM or 10pm she’d be there when I arrived and after I left. Her tiny limbs working so very hard. A weak smile on her face when I’d give her the fellow gym rat nod.

Anyway…at some point in our relationship that lasted years, Matt decided to follow his dreams and move to LA where he is currently an actor (I’m super proud of him). I promised I’d keep up at the gym but it just wasn’t the same. At one point in time I was there doing some crazy weighted step climbing on the cement steps in the dark back stairwell all alone and I asked myself what the hell I was doing. I hated it. I wasn’t feeling wonderful and fit and healthy – I just felt tired and fucking starving. I’m not training for the goddamn Olympics, I told myself. This kind of gym going was excessive and it wasn’t fun anymore. I stopped going to the gym and never went back. Interestingly, I was around 45 at that time and it was when I started to really notice some odd, haywire things going on in my body that lots of doctors told me were nothing to worry about. Ummmm…yeh. We know how that turned out three years later on December 1, 2015 when I was diagnosed with MS but that’s a different story.

My point here is that I find myself feeling the same way right now about my physical therapy. I find myself wondering why I’m killing myself on this constant, months-long loop where I work out really hard, I stagger to dinner on rubber legs and barely make it into bed to recover with some TV then fall asleep and do the same thing all over again the next day. Just like Matt my old trainer, Lauren and Aaron (my OT and PT respectively) make me actually enjoy these killer hours but my time with them will be limited by some very real things such as how long my insurance company will allow me to have this level of in-home care. I’m constantly worried that I’ll get cut off before I’m ready.

That starts me down another rabbit hole where I wonder how long I can allow myself to have this 100% focus on my care and my effort to get stronger before I really should consider going back to work full time. Yes. I’ve taken my own version of pausing life before Covid-19 forced one on all of us, I decided to go on short term disability after my surgery to give myself time to get stronger. I had no idea it would take this long! After two and a half months of ridiculously hard work, I can confidently say I am better. The degree of independence I have right now is proof of that.

Yet there are a few big giant catches that have prevented me from declaring myself well enough to go back to work, even from home. The first one is the level of energy involved in my recovery and the degree of sheer exhaustion that follows. There’s nothing left of me mentally or physically to devote to that other important part of my life. There just isn’t. Fitting in conference calls and trying to solve the problems of my tiny corner of the global advertising industry takes energy. Brain power. Time to sit on the conference calls. The ability to sit at all for hours long calls before I can no longer stand up! Practical things like that just aren’t practical for me in my current state. I’m empty inside when my hour of physical therapy is over. I can barely muster the energy for social media which for me is saying something.

The bottom line is that I decided long before the great Corona pause in normal life to devote the time I needed to focus 100% on my health – the first time in a nearly 30-year career. But then the virus changed ALL of our lives and turned the business world upside down and suddenly I’m questioning if I can afford to devote more than a few months out of a thirty-year career to allow myself to get some of my life back.

It hits me, over and over again how much of my life I’ve focused solely on making money and being successful. To think that taking a brief health-related pause might somehow leave me without a job, without an income and without the means to support my very expensive chronic illness is what goes through my head once I hoist myself into my bed at the end of my day to begin my desperately needed recovery time each night after my PT.

This virus, while giving the entire world the chance to feel what it’s like to be 100% out of control of your own life 100% of the time, the way we chronic illness sufferers are all the damn time, doesn’t give me the respite I actually need because even though it has given me time without FOMO, how novel, it also has turned the business I’ve been in for my entire career on its head in ways completely unforeseen when I made the decision to step back and focus on me.

And that’s what I’m trying to do with my time with Lauren and Aaron. I’m trying so hard to focus on me because I still have some really specific goals I need to accomplish before I can take my foot off the gas pedal of regular chronic illness Olympic-level training. Really big things! Like getting up and down those four cement steps from my porch to my house. Those four steps are everything to me. Every. Thing.

 A very good friend of mine read my last blog post and begged me to please try to give myself a break. Please, Bethy, she said, stop being so hard on yourself. You’re doing so well! Give yourself room to breathe. And I took her words to heart and I think of them every night whilst sitting on my bed attempting to unwind from a single hour of training and I try really hard to give myself room to breathe before it hits me that trying so hard to not try is actually trying in and of itself and then I just try (again) to find some mindless Netflix show to distract me until I have to pee again.

There is a long list of things I can do today that I couldn’t a month ago. I can feed my cat Fred in the morning and scoop one litter box. I can feed myself breakfast (well, sort of, because my adorable mom kind of lays it all out for me conveniently on the kitchen table so that probably doesn’t count). Even when I’m crushed after therapy, I’ve been managing to get myself into bed. I can refill my own water bottle which means I can now stand upright long enough to refill a liter bottle. I can sit on the porch and get myself back inside without bodily harm. Most days anyway. I can walk down my street two whole houses to the street corner and back again. I need help getting up the damn steps when I get back but I do pretty well getting down them and I couldn’t even do that a month ago. I can do three laps around my first floor otherwise known as my physical therapy gym. My last shower was kind of a big deal. I didn’t feel like I was about to meet my maker when I attempted to step up the tiny grade to get to the rollator that sits there waiting for me to rest while I brush my teeth. There are no transport chairs involved in showering. I’m pretty damn close to being able to shower without a chaperone though my mother feels differently. I did 20 squats last week while wearing a 20 pound weighted vest. I mean. Not all at one time but still.

I can do things. I just can’t do enough things to get more of my life back or to happily hop back on that whizzing treadmill of corporate America wherein I attempt to be as important and vital as I can be because like a good percentage of our population I’m terrible with money and without my actual bi-weekly salary I’m split seconds away from complete financial ruin. Thanks, Corona, for making me realize how badly I’ve screwed up my financial life a good fifteen years too late.

What I mean to say is, I finally understand that the way we live is so fucking wrong it practically screams it in our faces. Conspicuous consumption? Ask me how much money I spend on the potions I slather on my face to keep it looking and feeling younger than my 53 years. No. On second thought please don’t ask me that. I don’t want to answer. Even in my post-MS world, I somehow find a way to make my contribution to the damn economy even though I can no longer brag about having an impressive collection of really cool handbags and designer shoes. I still try to buy my way out of sadness and regret even now that I know without any doubt at all that’s not even possible. The extreme nature of this post-Corona world forces these reflections on me every single day as I realize over and over again that we’re in danger, girl, as Whoopi once said. We’re all in danger.

Healing in the time of Corona is a complex art. It’s a balancing act of trying hard enough but not too hard while pretending you can’t hear the ticking of the clock that tells you the world is about to get back to it and you’re still not outside world ready. I don’t think my co-workers or my bosses will be all that impressed with my ability to scoop one litter box (even though they really should be).

It’s not supposed to rain tomorrow which means Aaron, my PT, will probably want to get me outside walking and facing those four cement steps. I’m both motivated by this challenge and shrinking from it knowing how crushed I will be when our hour is over. I’ll climb into my bed on rickety legs and wonder what life will be like when I’m not in the MS version of training for a decathlon. Will I have enough energy to get back to some kind of life? Will that life still be there waiting for me? Will I have just plain taken too much time focusing on me?

It won’t be that life waiting for me. I can confidently say that my old life was a train wreck of misguided priorities that have been proven by the clearest of hindsight and zero parts of me want to pretend like I haven’t learned that lesson the hard way over the last nearly five years. But I will have to get back to some kind of life. It’s not comforting to me to realize that everyone feels this way right now – chronics and normals alike. Not comforting at all.

What is comforting is scooping that goddamn litter box. I’m going to focus on that for now.