How about a post that’s not about the disastrous state of my mental health? Maybe just a good old list of random topics about which I feel the need to rant a bit, like in the old days when my life didn’t feel so completely overwhelming and existential questions of the newly diagnosed and drug mayhem were my biggest complaints? You’d like that, right? I mean, I’d like that and we all know who I really write this ponderous blog for anyway (that would be mostly me and maybe a little bit you). Buckle up, BBADdies. Off we go!

My first topic is wheelchair use and body image.

This topic is quasi-fashion related but we all know damn well that BBAD gave up fashion for comfort about five years ago and has never looked back.

Well. That’s a lie. I look back almost daily when I roll into my giant closet and peruse the rows and rows of clothing I no longer wear and select one of about 30 black t-shirts that are almost Zoom appropriate (but not quite let’s just make this an honest rant, shall we?).

To be 100% honest, I barely wear shoes anymore either – not even sneakers – so the stacks of cool sneakers also mock me from the upper closet shelves that I can’t reach. I purchased most  of them over the last five years since giving up heels/wedges/basically anything cool that used to be so important to my image of myself telling myself that being a sneakerhead was still being a shoe lover (it totally is by the way). But my usual seated position causes all sorts of issues with how I clothe and shoe myself. And shoes often leave me feeling like I can’t feel my feet. So I don’t wear them if they can be avoided.

First of all, swollen, purple, cold feet are the bane of my wheelchair-using existence so I wear compression socks (with toes in them no less) nearly every day. It’s truly the only answer. I’ve tried all of the other things you’re about to suggest to me and probably a few more but the fact of my life is that I work in a job that involves tons and tons of video meetings where I must sit to be visible to my co-workers and I also have severe spasticity which makes my feet and ankles nearly immobile. Great combination! But I digress.

Yesterday it was 81 degrees in Pittsburgh because the Universe likes to fuck with Pittsburghers in April and heat sensitivity means I thought it would be a great idea to wear shorts instead of my usual long black yoga pants. Then I looked down and noticed my eggplant colored feet and I knew compression socks were not going to be ignored on this day, or any other day for that matter regardless of how hot it randomly decides to get before I’ve fired up my central air.

So yes. I wore shorts and knee-high compression socks with gripper socks on top of THOSE socks so as not to kill myself when I do actually stand up and, yeh. I looked like your great grandfather rolling around my house all day except for I didn’t put on slippers, too, and my socks weren’t black but a fashionable grey with neon yellow accents.

I also wasn’t home alone on that glorious fashion choice day. Brandon, the world’s best contractor, was here installing my gorgeous new deck and he brought his young hot brother to help. Brandon is hot too, don’t get me wrong, but he’s not only married with the cutest kids in America but he’s also like my actual brother who happens to be aces at building amazing accessible stuff for me so I’m never self-conscious around him.

That’s also a lie. I am self-conscious around anyone who sees me in the hot mess-state I am usually in but there are some people that just don’t bring out the vanity in me and thank the blessed Universe Brandon is one of those people since he’s seen me braless in my pajamas more than any other man in years and believe me when I tell you this is more mentally damaging than remotely sexy to any man these days.

Once the deck was finished, Brandon wheeled me out there so I could enjoy the sunny day from my new deck and it was glorious! Until I caught my reflection in the giant sliding glass doors to the deck. Jesus Roosevelt Christ. Old Me poked her head into my psyche and that bitch went ham.

“What are you actually thinking Bethy? HOW could you let this happen?!? This is a travesty. An abomination. Why not just head inside and don your Crocs to make this look complete? Oh and great posture, Sitting Girl. Excellent for gut highlighting! Good show! THOSE SOCKS AND SHORTS THO. Inspired choices. Really well done. I applaud you. Good show. Yes. That was worth saying twice.”

It was not a good show.

You know what happens when you sit? You fold in half and your body forms rolls. I don’t care how skinny you might be, it happens to all of us and it might happen to some of us middle-aged chronic steroid takers more often than your average bird. And as a not-skinny wheelchair user, I need to be OK with this. There’s just no two ways about it. Abs of steel aren’t in the plan when functional ankles are a luxury. That’s just all there is to it. No matter what fashion choice I make (or don’t as the case may be) there is no escaping the rolls.

I follow body-positive disability advocates all over the ‘Gram and it helps. It really does. Nina Tame is a particular joy. But I’m still a work in bo-po progress and I’m at the very beginning of this particular wheelchair journey. Dressing for a wheelchair when one is not 100-pounds and happens to also be north of middle age is just not easy.

You have to get to the point where you are just out of fucks to give. I try to focus my attention above my shoulders because even without makeup (which I also have pretty much given up on) and naturally gray hair, my above the shoulders me is mostly OK with me.

There. I said it. I typically like above-the-shoulders me! So I pretend the rest doesn’t exist until I catch an accidental glimpse and Selma Blair and her latest glorious spread in Town & Country pop into my head out of the blue and I realize how far I’ve fallen. I used to aspire to being a fashiony, and dare I say it, hot old lady. Hello, wheelchair! Thanks for starting me on a brand new body image roller coaster without my permission.

Let’s see…what else shall we rant about?

How about rando new symptoms that may or may not be MS-related? Ok sure! That would be super fun. Let’s do it.

I wake up every morning with the urge to gag. Not nauseous, per se. Just the overwhelming urge to gag over and over again. Of course I googled it and scared the shit out of myself with MS-related symptom fears because apparently I’m a novice chronic illness having person now? Sigh.

In a delightful call with my primary care doctor today she may have helped me figure it out and it might not be dire at all but gastro. And related to the fact that I’ve been sleeping in an amazing chair that allows me to lay perfectly supported and completely flat on my back – a new thing for me. In a bed, I’m a side sleeper. This gagging phenomenon has coincided with my new sleeping position. Dr. CM suggests I try sleeping at a slight angle to see if that helps me out.

If that’s not it, it could be several other non-MS related things! The fact that it only happens in the morning and I don’t have issues swallowing otherwise suggests it’s probably not neurological. Jesus, Bethy. You know Dr. Google is the actual devil! Just stop. Stop it.

Now  let’s talk about my new life living in the nature. How’s that for a smooth transition? An editor somewhere is reading this and cringing.

But back to nature. You guys. I have a love for some new things! Some not really new. I mean I used to have all of these things at my old house just not the Disney movie level of them I have now. The birds! Dandelions! Bunnies! Secret meadows that aren’t secret to anyone but me. They’re everywhere I look. From any position in my house I need only to barely move my eyeballs to the left or right and there’s Snow White out there talking to bluebirds.

I know people spend loads of money trying to avoid dandelions. They’re weeds I guess? I freaking love them. They make me happy with their little yellow first-kinda spikey heads that turn into fluffy white whispers of flying nature dust in the wind as they grow older. I love them. I want all the dandelions. I think because I shall choose not to fight them, my neighbors shall suffer the weeds. Sorry neighbors. Nature. It’s a good thing. I mean, from afar.

On to another simple wonder of my newly exhausted living independently in a wheelchair life. And that is the simple fact that PB&J is unsung and I’m about to correct that.

In the middle of my work day when I have less than 5 minutes between video meetings to pee most of the time, I struggle with lunch. I want to feed myself healthy food and take the time to sit and savor it. Yeh. That hardly ever happens. Enter the majestic peanut butter and jelly sandwich.

It’s protein. In my case extra crunchy Jif protein which is the only peanut butter for me and not because I’ve suddenly become a choosy mother. Props to advertising for that line, amirite? Extra crunchy Jif is like the perfect food but when you slather it on 217 grain and seed bread with a schmear of all-fruit blackberry jelly…I sit at my desk with this culinary delight and I eat it right there on video, some of the time, and I know my colleagues are jealous because it’s as close to perfection as a lunch can get.

But even better…at the end of my nine hour day of video madness and rando ten minute standing breaks and mini-squats to keep my glutes from atrophying and hamstring pull backs to maybe someday help me walk more than ten steps in a row…dudes. I’m too tired to make dinner sometimes and PB&J never lets me down.

It’s like the simple hug for my tummy that I can somehow manage even when my limbs are like “nah girl, sit your ass in the chair because doing dishes or even loading the dishwasher is too dangersome.” I’m never sad about my PB&J. I’m just grateful to whoever invented it. Period.

Last night after an anxious day where my brain mocked me while attempting mindfulness exercises, I rolled through the kitchen to grab an extra nighttime extra-strength Tylenol and boom! There she was. The full moon right there in my dark kitchen window. The pink moon no less.

Seeing the pink moon from my kitchen window was exactly what I needed at that moment. Of course I snapped a pic of it and immediately posted it to the socials because it made me remember how much I used to struggle to see the moon in my old house.

I couldn’t go outside anymore. Not by myself. The trees I loved so much blocked my view of the night sky even in winter. The windows weren’t in the right place. I could almost see the moon if I stuck my head out of my bathroom window at just the right time but we all know how deadly that bathroom was when I wasn’t trying to also stick my head out the window. Nighttime drives with the top down for moon gazing were a thing of the past. I longed for the moon! And there she was. Big as you please in my kitchen window.

Mindfulness didn’t get any easier after this lunar discovery. I was still in my overly busy head 100% but I sat in the dark in my kitchen and stared at the moon and didn’t cry. This felt like victory even with a busy irritating brain.

On a final note, after discovering the moon, I finally watched Crip Camp on Netflix and just wow.

I was struck speechless in so many ways but the one that disturbed me the most was my own off the charts ableism.

I mean, I’ve known about my imbedded ableism for quite a long time. I suppose the thing I’m most blown away by are the depths of said internal abelism living inside my very disabled body. I’m talking the deepest levels under the sea where the glowing creatures creep silently on the bottom of the bottoms of the ocean floor and the place prehistoric ocean monster kind of fish live levels of deep.

Crip Camp stomped on me with the truth of what it means to have lived 45 years as a temp, a temporarily able-bodied person.

It made me squirm and not in a way I’m proud of. It made me ashamed. It’s like that other “ism” that you swear to all that’s holy you don’t have in you but if you’re white and raised in this country by white parents and if you have gone through your life in this manner, you have racism in you, my friends. You just do. You might not be aware of it. You might actively fight it and advocate and protest and ally your little heart out but somewhere down deep where unconscious bias lives, trust me, it’s buried in there. It can’t not be! As it turns out ableism is kind of like that too.

I watched Crip Camp and realized why shame has played such a huge role in my luge ride to disabled life in record time.

It’s because I’m embarrassed. I’m embarrassed all the time I’m wondering what you think of me now. I’m wondering what they think of me when my wheelchair accidentally rolls into my Zoom frame. I’m certain of what I think of me now and it’s not something to be proud of. And while this isn’t supposed to be a post about my horrific state of mental health, you knew I’d sneak it in here somewhere.

There may be an entire post coming about what Crip Camp did for me. I don’t think I have fully processed it yet to be honest. If you haven’t watched it, temporarily abled or currently disabled, I implore you to do it now. If you don’t see your own ableism creep up on you, you’re a better person than me. If it doesn’t leave you changed in some way I’ll hang up my blogging fingers and call it a day. I obviously could never do that so that should tell you how confident I am making these bold statements. Watch the movie. Do it.

I’m not sure if this was a line in the movie that stuck in my head or if it was something I read somewhere like on the ‘Gram where so many amazing disabled people write things that regularly blow my mind, but a thought keeps coming to me over and over again as I struggle through today and ponder struggling through tomorrow, too.

A broken body doesn’t equal a broken life. A broken body doesn’t equal a broken life. A BROKEN BODY DOESN’T EQUAL A BROKEN LIFE.

I hope to someday get to the place where I believe that is true for me, too.