I don’t think there is a MS-related concept that has troubled me more than the notion that since becoming a full-time wheelchair user I have become what some would consider house bound.

I mean, those words! I shuddered typing them.

And yet the truth is that since becoming a full-time wheelchair user and because of the progression of my level of disability along with my strong desire to be even moderately comfortable, that is indeed where I spend 90% of my time. In my house. This house is where I stay – this house that I was so fortunate to be able to buy and then customize for accessibility so it could be as close to comfortable as is physically possible for someone who is almost never comfortable.

I work in this house. I work a lot in this house (again, thank the Universe because what the hell would I do for money?). We’ve discussed this before, at least a thousand times, but being disabled is expensive AF. I am single and currently fresh out of sugar daddys and I am 100% ok with that reality. So work is the gift i never stop feeling grateful for even when it’s insane, which many might say is the definition of choosing to work in advertising for nearly 30 years..

I receive physical and occupational therapy in this house as well as many a lab service, like my monthly Lemtrada-required labs (Lemtrada didn’t do shit for me but maybe make me sicker but those monthly labs will be a thing until 2023 and I’m not even joking).

My many drugs are delivered to me in this house either by my malcontent mailman or my delightful local pharmacy owner and friend, Bob, who delivers my scripts to my door on his way home from work (bless that man).

Everything I need for day-to-day survival (and even thrival…I think I just made up that word) is delivered to me at this house. From groceries to Target purchases to elaborate skin care products from ports all over the world to the perfect 100% cotton jammie bottoms I found on Amazon.

My hair stylists cut my hair in this house (those angels shall remain anonymous for obvious reasons). I eat every meal in this house. I visit with friends and family, all in this house. I celebrate every holiday in this house.

Here’s what this means, if you haven’t caught on quite yet.

I don’t ever go to Target or drive through Starbucks (or just drive any old where because for the first time in 38 years I don’t own a car).

I don’t go to the movies or brunch or to the latest cool eatery in the cool parts of town. I don’t go for a roll around my lovely neighborhood in my manual wheelchair because the simple truth is if I roll off of my driveway there is no way for me to roll myself back up the steep angle of asphalt to return to my house again. Also, rolling around outside on the various hills surrounding the Hidden Falls Home for Wayward Women is just not something this disabled old woman would ever have the energy for let alone the actual desire to do.

I don’t visit my mom, my sister, my brother or my various nephews or my one niece because none of them have a home that is even remotely accessible to me and my wheels-for-legs. Same goes for every one of my local friends.

The only place I have left my home to visit since being freed from my last visit at inpatient rehab on December 9, 2020 is Franzi’s office. And that’s so stressful I pretty much hold my breath until I’m back home again.

Why would you be so crazy, Bethybright, you might ask? Why not try to enjoy those lovely rides to the doctor in my lovely sister’s fancy car when they happen on nice days? And I really want to, reader, I really really do. And yet it’s incredibly complicated. I know. Shocker.

Sometimes my appointments at Franzi’s office take a while. I mean, pump refills for example, usually take at least two hours not because it takes two hours to refill my baclofen pump but because it all starts with getting me and my manual wheelchair into a vehicle.

My chair disassembles into many pieces that my sister dismantles and somehow shoves into the trunk and back seat of her sports car. Then she has to try to get my unruly ass into the passenger seat. And holy crap! That’s truly a feat because when my body experiences any little bit of stress – like say trying to get into a car without ending up on the concrete next to said vehicle – baclofen pump or not, I turn to solid stone. My legs have to be manually bent usually by another human not me, then each leg individually needs to be lifted  and placed into the car.

My legs are not only dead weight but they’re sentient stone dead weight that will fight you to the death before they’ll succumb and stay inside of the car. My legs have evil little brains inside of them – each of them, I am certain of this and they are committed to winning every fight they pick and they pick a lot of fights. Especially when I try to get them to work in the outside world. Ohhhh boy. My sister has no need for any kind of gym work out on doctor appointment days because she has her job cut out for her.

It’s not even close to over, reader! Because then the whole production has to be reversed to get me out of the car again once we arrive at Casa de Franz & Wang, my team of physiatrists.

You might think the whole car hijinks routine is the hardest part of me existing in the outside world but it’s not. The hardest part of me existing in the outside world is even more ridiculous. I could explain how every bathroom outside of my home isn’t usable for me because of the way I need to stand, and the places that grab bars need to be located just so which is 99.9% of the time not where the grab bars are located EVEN IN so-called accessible bathroom facilities.

But here’s a funny story for you that might bring this notion home for you.

You see, at my last visit to Casa de Franzi & Wang I had to pee. I mean shoot me! I have urinary frequency issues (thanks MS and the copious amounts of water I drink during the day) so sometimes it hits me out of the blue and I have to go to the bathroom in a place that is not my perfectly equipped home. And that happened during my last pump refill visit. No big deal, right? I’m in a physiatrist’s office! The majority of folk who visit this place are likely to need accessible facilities!

There is one bathroom in the office and it doesn’t have the usual accessible high toilet but it does have grab bars, one on the right wall next to the toilet and one behind the toilet. Hmmmmm…Behind the toilet for those disabled people who have arms growing out of their backs?

Next time you’re out, just for fun and because you like me sometimes, notice how many “accessible” bathrooms have bars on both sides of the toilet. Just peek inside! Don’t go using the accessible loo if you’re perfectly able-bodied, but that shouldn’t even need to be said.

I’m guessing by now you can guess what happened at Casa de Franzi & Wang.

I got stuck on the damn toilet. I tried to maneuver my unruly stone body in every possible direction to avoid pulling the “holy fuck I’m stuck on the toilet” string but it just wouldn’t work and I was dangerously exhausted and dangerously close to falling off the toilet on to the floor which would be ever-so-much larger of a predicament that the mind reels. So pull the string I did.

Maria, Franzi’s amazing nurse practitioner and my friend and personal hero, came running immediately as I knew she would, but using a human – or even two humans – as grab bars (nurse Stacy came running too) isn’t a viable solution when a stone person is stuck on the can. Unless said humans are power lifters or somehow physically anchored to the floor, using humans as grab bars when one is physically spent and naked from the waist down is just a very dumb idea.

Of course it didn’t work. Of course I had to use my weirdly flexible body to twist around and somehow grab the behind-my-back bar and the beside-me-bar at the same time whilst simultaneously getting lifted by two average sized human female nurses. Did I mention I am still naked from the waist down while all of this is happening?

Right. I thought I did.

Someday when I’m not so tired I will write a thrilling post about how a person with atypical aggressive progressive treatment refractory multiple sclerosis can be both spastic to the point of in-need-of-the-oil-can Tin Man levels of stiffness while ALSO being freakishly flexible in other ways. I’m exhausted just writing that paragraph.

Okay. So yea. Bathrooms in the outside world even the ones in doctor’s offices are a problem for me. Always. The bathrooms in my lovely new home? Those are rarely a problem at all.

Listen. Mrs. Nigro didn’t have any stupid children. I knew when I finally made the decision to sell my beloved 150-year-old home to buy myself this odd unicorn of an accessible and completely unaffordable home that home would be where I would spend most of my time. I did a lot of hard thinking about that idea while enjoying my last 29-day-stay at IPR.

LISTEN. I know I’m not dying any time soon (dog willing) and I know that I’m old but I’m not that old blah blah blah but I’ve lived a great big life in the time leading up to my unceremonious slide into very real and very scary levels of disability that most MS’ers take decades to achieve.

I’ve been to all of the places, had so many adventures I lack the energy to detail them here in words (but remind me to tell you the story about how my lovely friend Mary and I were once mistaken for high-priced call girls at a fancy bar in Monte Carlo all because we chose to sit on the only two oddly vacant but super convenient barstools in the entire packed bar).

For 50 years, even after I started tossing rollators in the trunk of my various convertible vehicles, I ran around like a person running out of time. And I loved every single second of it. But here’s a frank admission for you.

I am exhausted by this disabled life. I am spent. I am different. I am obviously older (54 at this writing) and I was already slowing my roll before being diagnosed with MS at the ripe old age of 48. Trying as hard as I did to do and be ALL OF THE THINGS for 40 plus years is just long enough. Even before MS, I spent most of my time at home. Reading. Watching copious amounts of television. Reading. Writing. Reading some more. Those were the things that gave me joy.

The last two and a half years have left my head spinning and my heart reeling. I was walking less than a year ago. I was sleeping in a bed. I was standing up like a champion stander. All of those things, including using a toilet in any location that isn’t my home, don’t happen all that easily anymore.

I can barely dress myself. There. I said it. I am fully out. I have nothing to hide.

I work full-time with other professional humans and I hold my own, you better believe I do. But I’m doing it most of the time while unshowered and in my pajamas. That’s just the way my life is now. I never thought I’d type those words without sobbing but I just did it. And I didn’t perish. My colleagues don’t seem to notice or if they do, they don’t much care.

But I find myself not finding joy the way I used to doing the slow, quiet things I used to love. I’ve had a hell of a time reading, for example. I have gorgeous wonderful books waiting to be read and a brand new Kindle that puts the world of books at my fingertips. But I’m only on book number 7 for the year when in the past I’d have read at least 20 or 25 books by now.

I find myself telling myself how happy I should be in this amazing big house that accommodates most of my incredibly complex needs so well. I find myself feeling sad and in my head looking at your Instagram pics showing you doing all of the things (like I used to do) whether on your own two feet or in a wheelchair and I’m over here rolling around this gorgeous new place like a ghost haunting her semi-new-construction dream home.

I bought this house with its bucolic views (like the one above which is the view outside of my office windows in the front of my house) knowing full well that I’d be spending the bulk of my time within its very swanky walls. I blew every last cent I had customizing said swanky walls because of that reality. I knew this house, while just a damn house, would be the stage for what my next act of life will be. THAT’S WHY I BOUGHT THE DAMN HOUSE.

And yet. And yet I struggle.

It’s funny really. When I was a temp, perfectly if awkwardly abled, I used to gleefully describe myself as indoorsy. I got so sick and tired of people telling me about how great it was outside I made up my own word for my lifestyle and indoorsy was spot on.

One time in my old neighborhood, my friend was staying with me for a short time and she and I used to spend a lot of time sitting on my porch swing smoking ultra-light menthol cigarettes and drinking wine. There was always a veritable parade of neighbors passing on the sidewalk in front of my house, walking dogs or merely walking and talking or power walking for obvious exercise (??). One early evening while my friend and I were on the porch doing our favorite things and waving every five minutes to friendly passers by, she looked at me said to me, “Dude. We sit here every evening watching all of these people walking around the neighborhood like it’s the best thing in the world. Maybe we’re doing this wrong. Should we go for a walk?”

“Um, sure. Why not? It looks like fun. Let’s do it!”

So without a second thought we walked right down the front steps of my porch and out into the big wide world of my then neighborhood. We got halfway around the block when I looked at her and said, “Dude. I’m sweating. It’s so much hotter out here in the ‘hood than it is on my porch. I miss the living room where it’s always cool and comfy,”

“I know!” She said. “Nobody else looks like they’re sweating like whores in church. What is up with that?”

We took a few more steps and walked right through a giant but invisible spider web hanging from one of the many beautiful trees lining the cobblestone streets of Aspinwall, my old neighbood. We both started coughing and waving our arms in the air to try and rid ourselves of the gossamer sticky invisible insect traps that were now stuck to our hair and matching overalls. It was the nineties, you see.

We continued walking. I should note we were less than a block from my house when we noticed the bugs. Flying little tiny things buzzing around in clumps around  our heads. Like random clouds of annoyance that we’d just walk right into without warning. We both were walking around flailing our arms about our heads, again, to keep the bugs away while almost spilling our to-go mugs of wine. We looked ridiculous.

She looked at me with bright eyes, “Dude. We should totally smoke. I bet the smoke would keep these little fuckers away from us.”

“Oh right! Great idea,” I say while fumbling to light two cigarettes also without spilling my to-go mug of wine while partially covered in spider web, and handing her one. I should note that the cigarettes were a passing phase, but again. I digress.

We continue walking and smoking and looking at each other with strange not-quite-sure looks on our faces because the other walkers we were seeing and greeting with collegial hellos didn’t seem to be having the problems we were. They weren’t even smoking and waving their arms around their heads!

When we got to the end of the block where we had to decide to continue walking straight to go around yet another block or turn right to walk back to my house, we looked at each other without a word and both turned right and picked up our pace a little because we could see my house looming in the distance like a sanctuary of cool air and bug-free atmosphere.

We never took another walk around the neighborhood. And it was good.

There were other life experiences that reaffirmed my commitment to an indoorsy life. For example, I remember that one time when I was in my late thirties and I fell in love with an extremely outdoorsy man. He lured me in with his freakish good looks, extensive artistic talents, his love of Jim Garrison novels and his oopen adoration of me but underneath all of that veneer was a freaking tri-athlete who ran and biked and paddled and ran some more FOR FUN.

I was in a phase where I told myself that I should be flexible when it came to relationships with men and try to be open minded about doing new things and getting outside of my comfort zone. What could be better than discomfort zone exploring with the hot guy you’ve had a crush on for a decade? It seemed like such a good idea at the time.

It started with a tandem mountain bike. Yes. You read that right. A mountain bike. For two. For those not in the know, mountain bikes are built to be ridden on what’s called single-track trails through wooded areas. I know! Who the hell ever thought to ride a bike through the woods? Bikes are deadly enough just on asphalt streets. But I was being open minded and I was in love! So I put on the tight black shorts with the padding in the ass that he bought for me (!!!) and prepared for adventure on this so-called tandem mountain bike that looked more like a bike-shaped city bus that’s how huge it was. I had on the completely unnecessary padded black shorts but I also had on lipstick because of course I did.

I’m not sure I have the words to describe how this tandem mountain biking through the natural world experience played out. Yes. The woods were beautiful. There was much nature to be seen. However, it became clear to me almost immediately that the main function of the open-minded idiot on the back of this giant red tandem contraption was to functionally be the engine room. My job was just to peddle my little black heart out whilst my professional but hot mountain biking boyfriend steered us through perilously tight spaces between trees whilst whooping and looking back at me yelling, “you’re doing great, babe, isn’t this amazing?!”

No, reader, it was not amazing.

I wanted to be put out of my misery and then perhaps kill him. I wish I could say that first tandem mountain bike ride was the only one but hey! I was being open minded and flexible! I wanted new experiences! There were many rides on that bike built for two from hell. We walked, we ran, we kayaked and paddled. We even freaking snow shoed on cold snowy winter days on untouched fallen snow in some nearby woods to his apartment.

I have actual scars on my person from the number of times I fell and injured myself in this, my time of pursuing openness in relationships. One of these scars is on my face. I see it every time i look in the mirror. It mars my left eyebrow and forces me to never forget this time of love and idiocy. Good Christ on a cracker. Young Bethy really could have used smacking upside the head.

We stayed together for a few years. I mean, we did have other things in common but when it finally hit me that all of the open-minded effort was coming from me trying to be the perfect outdoors woman girlfriend I knew it was time for this love to be gently put away. It wasn’t gentle. It was ugly, that particular break up, but it taught me a lesson about how important it is to be true to yourself in relationships but also in life. I stopped trying to be outdoorsy for men or for any other reason.

The most outdoors I truly loved being was on a back road in my convertible with the top down and music blaring. That was me being outdoorsy. And I miss it so much sometimes it feels like nothing will ever fill the convertible-sized hole in my heart. But that was me loving being outside. I rarely even got out of the damn car if I could avoid it.

And yet those two words pop into my mind over and over again: home bound.

With the help of both of my current therapists I’m teaching myself to stop believing the old ableist stories I insist on telling myself. One of the most common stories is the story about how there’s just no way I can be happy and live this inside life. According to the delightful Nina Tame, “An inside life can be just as rich as a life on the outside especially when outside can be so bloody inhospitable.” After reminding myself of the stories I just shared with you, dear reader, and some of the many others like them that my memory serves up to me when I’m being truly honest with myself, I start to see this inside life with a different lens. Maybe I’m lucky to finally accept the truth that has always been at my core: I’m indoorsy, goddammit. And to borrow British slang from my beloved Nina, I’m bloody lucky to have such a wonderful, safe, as-comfortable-as-I-can-be haven with breathtaking views all around me from which to live my inside life.

But because Robert Frost and S.E. Hinton taught me well that nothing gold can stay, that lovely giant empty lot that has been the basis for a blood quarrel between two brothers unable to settle on a price for the prime property location right across the street from my town home after their developer-father’s death fifteen years ago has finally been sold. Surveyors were out there with their despicable equipment just the other day plotting to build some home-like monstrosity that will change my own personal field in Switzerland view (as it has been dubbed by a dear friend and follower on Instagram where I constantly post pics of this very same view over and over again). I’m told the brothers are now fighting about the plans for the final home design specs that will go there.

Here’s to hoping it takes them a good long time to agree.