Do you remember this epic scene from Ghost when Whoopi tells Demi Moore’s character Molly how she was in danger from specters from the great beyond?

Better yet do you remember the original Friday the 13th movie, the very first one? It ends with one of the only surviving campers from Camp Crystal Lake somehow making it to safety in a row boat out in the middle of the lake after all of her friends had been butchered by Jason’s mom. The pic above is that very scene, and I can tell you without shame that just finding that still shot from the movie on the internet gave me creepy chills because I remember viscerally how traumatized I was when my parents actually allowed a neighbor to take my sister and I to see the movie back in 1980 when I was an impressionable 13-year-old who was in no way prepared for what happened next. Of course the undead murdering Jason pops up from the serene lake water and grabs that sweet girl to drag her to her death just when I was thinking she was actually safe. Lake vacations terrified me into my adulthood.

I’m still trying to figure out why my parents thought it was a good idea to allow my sister and me to see Friday the 13th the movie when we were impressionable young teenagers. I guess my sister was 15 so that’s not so bad but…I was too young or just too much of chicken shit. I mean, these were the same people who planned a fun family night out to see the original Jaws movie back in 1975 when I was all of 8 years old thus ruining the beach for me for most of my life. Maybe terrifying your children was perfectly acceptable parenting back in the day? Maybe ruining large bodies of water was one way to make us kids never want to actually take expensive vacations we couldn’t afford?

In any case, I have vivid memories of what it felt like to be scared shitless just when I thought I could see safety on the horizon and BOOM some poor schmuck gets eaten by a giant shark (I mean, Chief Brody TOLD them they needed a bigger boat).

I guess I thought I got myself a bigger boat and therefore my days were mostly over of being terrified by normal everyday tasks like moving from wheelchair to lift recliner or from toilet back to wheelchair – the thing we disabled wheelchair-using folk refer to as transferring. Except for it doesn’t matter how wheelchair accessible your new-ish home may be when your feet turn into skis when you try to plant them on the floor to stand up.

The ski-effect happens because my feet sometimes don’t flex themselves well enough to do a strong stand. My heels float off of the ground forcing me to pretend to be the world’s least graceful ballerina walking on her spastic claw-like toes. This phenomena is likely the combination of many factors. For one, I’m about a week out from my next botox appointment which is how we manage the spasticity in my feet and ankles and so the stiffness came back well before I am medically permitted to get more botox. Things like insurance and how medically safe it might be to shoot 600 units of botox into various parts of my feet and lower legs are what stand between me and flexible feet. Adjusting my baclofen pump higher might help, but it will also likely weaken my larger muscle groups too much making it hard for me to bear weight.

Getting my lower extremities to bend enough but not too much is a delicate equation. Once again, I am reminded of why I wish Dr. House was a real person. I need that team of medical mystery solvers on my case. Because sometimes it really IS lupus…or in my case atypical, progressive, aggressive, treatment-refractory multiple sclerosis but I feel like Dr. House would be all over this spasticity/weakness dilemma that is my daily life.

But let’s get back to the terror, shall we?

I remember feeling terrified all of the time in my beloved old home. I even wrote about it quite a lot but this time in particular seems most relevant when I wrote about how my first round of Lemtrada left me periodically unable to move my legs. OK. Maybe it wasn’t the Lemtrada at all that caused this terrifying form of temporary paralysis. The temporary paralysis could have been just some really shitty timing on a worsening of my progressive MS but I like to blame Lemtrada because that bitch got my hopes up for some kind of miraculous HSCT-lite outcomes and it just didn’t do that for me. At the time of writing that post I still felt Lemtrada-related hope. It makes me sad to read it again but the terror is the feeling I am focusing on here. I felt that terror deep in my soul where dark scary arms without bodies grab at my heart like spiders from a deep pit where evil lives and threaten to suffocate me. It’s not a pleasant feeling. I am struggling to describe it adequately and I call myself a damn writer.

I’ve felt fear many times in this new home. I have MS. MS and fear go together like Sonny and Cher.

There is no escaping fear when you have an illness that quite literally can render your body or your mind or both completely useless without a hint of warning. There is no escaping fear for those who suddenly find themselves with a bad case of optic neuritis and go suddenly blind. Is it temporary? Is it forever? The MS Rules say wait it out for 48 hours before freaking out and calling your doctor or speeding yourself to the ER hopefully with someone else behind the wheel. The MS Rules are things I’ve either gleaned from some MS-specialist medical professional or some blogger on the internet both are often not very helpful but if I had to choose where to learn most important things that are at all useful for teaching me about this bastard of a disease that is my constant companion in life, I’d probably choose the blogger more often than not. That should tell you all you need to know about life as a medical mystery.

The fear I have felt in this house is of a lesser variety than what I was used to living with in my old home where I was at risk of terrible, horrible, awful things almost every second of every day. I was still stubbornly trying to navigate the world on my dysfunctional legs back then. The very word “wheelchair” made me sick to my ableist stomach. But now I am doing all of the things that I once resisted that somehow meant independence to me and were in fact the very things that held me prisoner inside of my broken body. I love my wheelchair. I love the idea that I could soon have an even slicker power wheelchair in the quasi-near future that might actually lead me to feel more comfort and less constant unrelenting pain. I gave up my beloved but completely inaccessible 150-year-old home and got myself this absolute unicorn of a dwelling that allows me to enjoy nature without ever needing to actually BE in nature which is pretty much my ideal state. It also allows me to quasi-safely navigate from room to room, enjoying more terror-free freedom than I thought was even possible for someone with MS like mine. Thanks to not one, but two lift recliners, I am mostly able to sit in two different rooms and not be in my wheelchair for a spell. Incredible luck and good fortune fueled by tons of hard work have made all of this possible.

Yes. I still resist allowing myself to feel calm or safe-adjacent in this unicorn home, but I’m working on that. I’m working on that very hard with not one but two therapists, one of which put me through the process of Acceptance and Commitment (ACT) therapy that nearly undid me and has now somehow gotten me roped into a therapy even more intense for an over-controlled coper such as myself called Radical Open Dialectical Behavior Therapy and it is A LOT. For funsies, here is a basic tenet of RO DBT: We see things in the world not as they are, we see things in the world as we are. Oof. Right.

Here’s the thing. This occasional ski-feet situation has this home, this place of relative safety, feeling like a house of horrors.

When I look around at the gorgeous views all around me from my gigantic windows in every room everything has a strange film of gray over it as if my eyes have suddenly developed their own Instagram filter that renders everything I see dreary and threatening. My nighttime safety and comfort are suddenly mysteriously gone because I can count on the need to transfer at least three times before bed to use the bathroom and my feet may or may not flatten to the floor sufficiently to allow me to safely stand. My beloved lift chair recliners become American Ninja Warrior-like obstacles as opposed to the comfy foot-elevating delights they truly are. Standing up in the shower on a wet soapy floor is just not happening. Trying to wash and shave all of the places that I like to shave requires a seated acrobatics unlike anything I thought was even possible for me. I thank the Universe for my strange flexibility every single time my shower buddy lifts my legs over my head in the shower. Flexible while fundamentally spastic. I am a living breathing paradox.

I’ve had a couple of near falls that made my heart race and my breath leave my body. I’ve said it before but I think almost falling is somehow worse than actually falling because almost landing on the floor leaves me waiting for the other shoe (or Bethy) to drop. I’ve had the specter of almost falling hanging over my world for weeks now and it’s a straight up mind fuck.

Before anyone says it, I will say it myself.

It is possible to live a wonderful life without bearing weight on one’s legs. Lots of disabled people do it. I have a strong feeling that might happen to me some day and I need to accept that. And I will. When that time comes I will make the further renovations to my home that will be necessary for me to live a full life without standing. I promise you I will. That time, though, is not now. I’m working on the interventions I need to keep me weight bearing for the time being, such as the treatments mentioned above. I am working with my occupational therapist on static standing (while holding on to something obviously) and just today I was able to stand for 13 minutes and 16 seconds. Earlier this week it was only 8 minutes and 42 seconds. I can improve ever so slightly that even though such tiny changes aren’t terribly motivating to me, I tell myself that every second counts and then I punch my pretend American Ninja Warrior red button for completing my own personal obstacles. Those precious minutes are enough to keep me functional in my home right now without yet more costly renovations. That works for me right now. I need that to work for me right now. I will embrace a life without standing when that time comes. That time is not now. (Famous Shakespearean quotes come to mind…”Methinks she doth protest too much,” the message is not lost on me).

I’ve made some adjustments that I consider pretty major for an ableist nightmare of a human like me in an attempt to make daily life less harrowing. I’m trying to be open to other ways of looking at this chronically ill life I’m living.

I mean, I embraced having another human in my home! I have an actual roommate and somehow it’s working. Audrey, said roommate, is not my caregiver however nor do I ever want her to be. So I found myself an actual part-time caregiver angel person. Her name is Lina and she is a miracle. She shows up and whips me up delicious things to eat while I’m on my fourth video meeting of the day and have already hit the exhaustion wall because using my brain while seated ALSO makes me incredibly exhausted. Thanks, MS. That’s amazing of you. Who knew? My new OT Jody suggested a brilliant solution for the sliding feet phenomena that I already own and were stuffed in the pocket of one of those lift recliners – little booties intended to help people with Plantar Fasciitis. My favorite nurse practitioner Maria from Franzi’s office suggested I look at something like this a long time ago as a tool for stretching out my spastic calves and ankles. I’d forgotten all about them! They have rubber on the bottoms. My feet don’t slide when I have them on. They also hurt like hell after an hour or so of wearing them but they keep my feet from skiing out from under me so I’ll put up with yet more pain. It’s the good for you kind of pain? Yeah. Right. I don’t even buy that.

Pain straight up sucks. I’m in some kind of high-level pain 24/7 which doesn’t help when one is trying to minimize one’s daily personal defcon levels. Everything I try that is intended to help my pain levels, like the latest script for Lyrica that started to actually make my pain levels bearable, seems to come with a side effect that makes it not worth the modicum of relief I experience. For me, 150mg of Lyrica a day was making my lower legs and feet swell a whole lot. Swollen feet and ankles are (wait for it) difficult to bend. One can’t take Lyrica and sit in a manual wheelchair all day while working an 8 or 9 hour day at a computer with legs down on foot plates and not add to the swollen feet and ankles situation. Back we are at square one.

On the positive side, Lina lives very close to my house meaning she can be here in a jiffy if I happen to be alone with skis for feet thus needing help to stand to transfer. One night in particular, she made me a little pile of random oddly shaped memory foam pillows that were laying on the floor in my bedroom to help reduce my Lyrica-induced swelling. Then she fed me and rubbed my feet and laid on my couch until I was OK again. She would have stayed the night if I needed her to and that reassurance is comforting to me, to say the least.

But the terror-filled days and nights come back off and on making everything go gray like some magical depression light switch (dark switch? I told you words weren’t working so well right now). I forget how to write. I struggle to focus on the latest hot show everyone is streaming. I can’t read. When my world goes gray it’s also hard to focus on my day job of running new business for a big advertising agency. The job my pain management doc suggested I quit when I mentioned stress a couple of times (five, according to him) during a video visit about the Lyrica swelling issue. Right. OK. I guess Dr. Kabazie is planning to fund my big fat expensive disabled life AND figure out how to add three or four more mental health professionals to my team when I go mad from losing the one thing in my terror-filled existence that helps me feel human. Like myself. My fully disabled and employed self.

I guess what all of this going on and on about is to say that having a chronic, progressive, aggressive blah blah blah is like a constant practice in getting right in your mind regardless how you can get yourself there. The terror always comes back like an uninvited guest you wish would lose your new address but then it goes away again like poof! And you’re sending your mom pics of the egg salad sandwich you made yourself for lunch (ok the eggs were already hard boiled so it wasn’t so amazing but I still count it as a small win). It’s the back and forth so many times even in one day that keeps you permanently off balance. I find myself wondering how one gets used to an existence that will always be so unpredictable with wild swings to such extremes it can be hard to figure out where you stand at any given moment let alone on any given day. I find myself wishing for a miracle that will make the gray filter go away for good but I know that’s not how life works.

Life gives us moments. Blips. Glimpses of being OK. We have to find our way back to them somehow when that dark switch gets thrown, believing beyond reason that the light will come back again even when all evidence seems to point to the contrary. Even when you in danger, girl. Sometimes it really is just a serene lake. Grab those moments and hold on for dear life.