I’m sitting here looking at friends’ pictures on Instagram of their super fun long holiday weekend plans, thinking about my family who have gathered at my niece’s new house for hot dogs and deck sitting that I could not attend and looking out my front door from the only chair in my living room that is relatively comfortable in my current condition at what looks like a singularly glorious day with not a smidgen of humidity in the air and I’m not feeling badly about myself.

Well. I’m not feeling that badly about myself. I’m feeling fine.

Not fine as in, that is some fine ass wine or your ass looks fiiiiinnne in those new stretch denim jeans, but fine as in I’m not consumed with angst nor figuring out new and creative ways to feel badly about my life. This life. The life I never really wanted but should really start appreciating more because it’s happening all around me whether I choose to enjoy it or not.

It dawned on me about a week ago that I’m doing some serious squandering of precious time because I’ve somehow allowed the quality of my life to be determined by a few very specific criteria most of which I have absolutely no control over and all of which seem to be related to the effective use of my legs.

If you know me in real life, you probably know how ridiculous that sentence truly is. The simple truth is that I have hated my legs for most of my life. They’re not the kind of legs young girls dream of having, truth be told. They’re not long and lithe. They are short and kind of stumpy. My legs have always been what some would call substantial, muscular, even strong – curvy to some who wanted to make my legs more socially acceptable, thunder thighs to others, like a few ex-boyfriends of my youth who seemed intent on finding hideous new ways to make me feel badly about not having great stems. I’ve cursed my legs since I was old enough to know that ballerina legs were where it’s at and strong, solid legs would make shopping for jeans a freaking nightmare for life eternal.

Now my strong, solid legs are no longer strong nor solid. They have become solidly unreliable, truth be told, as a result of some very specific and ugly lattice-like lesions all over my once-taken-for-granted spinal cord. Those lesions are what inspired my second opinion doctor at The Cleveland Clinic to tell me, with a completely straight and humorless face, “We don’t have any therapies today that can heal this kind of spinal cord damage, in fact, I’m impressed that you are able to stand in front of me at all. You’re doing incredibly well based on the extent of the lesion load on your spine.” Yes, I did cry most of the way home between Cleveland and Pittsburgh even after my sister and I stopped for Jeni’s ice cream before we got on the road, and crying into Jeni’s is almost impossible to do, it’s that goddman good. But yeh. My legs have some very real things working against them, things like actual damage you can see on a various looks at my lumbar, cervical and thoracic spine.

Each and every day since my diagnosis in December of 2015, I’ve focused incredible energy on the state of my legs at any given time. Through two marathon long hospital stays that involved in-patient rehab. Through various phases of ever more complex mobility aids – from Stanley, my first cane, to Laurel and Hardy, my trekking poles, to Nitro my first rollator then to Clara my second, more sleek Carbon Ultralight rollator, to my regular old silver metal second floor walker that didn’t get a name because I resented her so much, to DJEZRock my motorized wheelchair to the as yet unnamed manual wheelchairs one of which is a loaner already in use and the other that is supposedly on the way after being built just for me in California. Through work days and sick days to social events and holidays to outside life days and bed days, these legs of mine have been the bane of my actual existence.

The first thing my mom asks me when I call her in the morning once I’ve achieved my first hurdle of the day, that being actually getting out of my damn bed is “How are your legs today?” Almost from the beginning of my diagnosis, I found myself thinking of my day in terms of good and bad leg days. Back in the beginning, when I could still blend in like a normal under most circumstances, a good leg day meant I could leave my cane in my car. Today, a good leg day means I can stand up and make it to the bathroom before I pee my damn pants. It reminds me of when I was young and vain and I would base the outlook for my day on whether or not I was having a good hair day or if my make-up of the day look that I posted on Instagram was getting a lot of likes and comments. Yes. I did that. Wow.

Anyway. Back to my legs. Talking about my make-up of the day depresses me even more than the obvious truth that I have legs that are not likely to just start working like they used to back when I was busy taking them for granted and hating on them. Maybe it was the second five-week hospital stay that finally hit me over the head with this obvious reality. If the quality of my life from here on in is based on my ability to walk, or have normally functioning legs, I’m pretty much screwed. We need a better system. We need to re-evaluate the way we assign value to each block of 24 hours we are fortunate enough to be given. Maybe we started to get the picture when Bethany, my inpatient physical therapist, was measuring us for our first official wheelchair.

By “we” I mean “me” and all of the many judgmental, ableist voices in my head. Those assholes work overtime making all kinds of noise about how worthless my life is quickly becoming and they need to be put in their damn place.

Last Saturday I had dinner plans with my friend Jennifer. This might seem like no big thing to most people but to me, it was pretty huge. Granted it involved ordering take out and eating it in my newly transformed dining/kitchen room with a single glass of rosé, but I was clean and I even put on some tinted moisturizer (that I did not post on Instagram…I’m not that much of a glutton for punishment).

It was an early evening date with one of my favorite people and it was almost ruined when I woke up Saturday with shitty legs. Like shittier than usual. I usually know when it’s going to be a shitty leg day when I have trouble getting to and from the bathroom. I stand up and test the steadiness of my legs with one of my many walkers. I take a step or two and evaluate my level of terror at the thought of walking the fifteen or twenty steps to the bathroom. Most days I force myself to take this terrifying walk whether I really want to or not because if I don’t, I immediately assign the entire day a failing grade based on my inability to walk a few steps. The second I let my butt hit a wheelchair for getting to and from the bathroom, I feel like a failure at life. My soul is crushed. My heart sinks. I am DISABLED. My life is sad and ridiculous. (Let’s not even consider the days when I can’t make it to the bathroom at all and I am forced to use The Bedside…it happens…and I add on double triple judgement to my stupid legs on those days.)

But I had dinner plans! And I have so many mobility aids it’s almost ridiculous. I try not to use them because I live with this overwhelming fear that the minute that I stop taking my life in my hands trying to stay on my own two feet as much as humanly possible, if I should do this for even one day when my legs tell me they are tapping out for the day, I will never be able to stand up or walk again.

Use it or lose it, right? Isn’t that what we have pounded into our spotted brains almost from the very beginning? Isn’t ending up in a wheelchair one of the first things a MS specialist tells you not to worry about because it’s not likely to happen? I mean, The Great Scott, my personal MS specialist, told me very specifically at our very first meeting that we had no reason to assume I would need anything more than a cane as I got older. My disease might respond well to the very many advanced disease modifying therapies available to patients today, he told me. We had no reason not to feel optimistic on that fateful day. (Yes, I am still speaking to TGS because he is my very own medical wizard and I can hardly hold optimism on my behalf against the dude besides I openly geek out over how smart he is and how he’s willing to explain even the most complex, gnarly chronic disease concepts to me.)

On that Saturday, I made the decision to just use the damn chair(s) – use the wheelchairs as much as possible, as much as my body told me it needed them. I made the decision to possibly not even get out of the chair at all except for using the bathroom, if it came to that. I would deal with the inevitable full-body paralysis that was sure to result on Sunday from my pathetic weakness, from my sad decision to accept defeat and sit my stupid ass down for as long as was necessary for me to drink my glass of rosé and eat my delicious take-out salmon and talk to Jennie about all of the things! I really needed girlfriend time. It would be worth it.

Except for I wasn’t totally paralyzed the next day. It was just a regular kind of day. I mean, my legs still acted like their typical wonky selves, but they were no worse than usual. I got up, got myself dressed and had a day just like any other day AND I had had a fun Saturday girl date for which my soul was yearning, for I don’t even remember how long.

One day in a wheelchair didn’t ruin my life. It might have made my life a bit better if only for a short time and lord knows I really needed it.

I’ve since had discussions with both my physical therapist and occupational therapist about how I am adjusting my mindset as it relates to my goals. In my mind, I accept that walking, for me, is always going to be assisted. Walking, for me, is for very short distances and for very specific purposes. I’m not even sure why I’ve clung to walking for so long. I never much liked it even when it was easy. I was always more of a driver than a walker and I have committed myself to learning how to drive with hand controls, if that’s the only way I can drive, so that’s not going to be a long-term issue either. I’ve clung to walking to my own disadvantage and to my own detriment. And yes. I realize, more than one of you lovely readers tried to tell me this more than one time, more than twenty times, even. I’m of that particular hard head variety that has to go to the depths of despair before I can finally see my way out. As my OT Lauren calls it, I can and will be a functional ambulator. I need to be able to stand, bear weight, walk a bit from place to place but I don’t have to kill myself just to be able to say I did it. That’s how I end up ass over teacups on the ground. I prefer not to spend unintended time on the ground if at all possible. Using a wheelchair (or two as the case may be) is going to help me prevent that.

I’m not foolish enough to think that this epiphany is going to be my last MS-related moment of truth. I have a chronic progressive disease. The only thing I can count on is change and I can almost guarantee that the change won’t be for the better. This change of mind, though, has been far too long in coming, and as it turns out, it is also rather timely.

Afterall, I’ve just returned to work after a far too long absence. Remembering that my brain still functions pretty damn well was a really nice reminder that my quality of life has never relied on my legs. Not even when my legs functioned as legs should.

I also just got some very, very good news as I’m sitting here writing this post. My offer was accepted on my next new home. A home much more accessible and livable that will accommodate my wheelchair(s), give me the freedom to go outside when (if) I want to, and allow me to worry a lot less about how I’m going to do very basic daily tasks without nearly as much effort. Who knows? Maybe my next phase of life will even have some actual happiness in it.

I never thought the day would come when I’d view leaving my current home as anything but heartbreaking. But that day will come. It will be November 4, 2020. Holy crap.