If you’ve been with me on this journey for a little while, you probably know that I rarely hold anything back.

For better or worse, these pages have been my personal confessional where I spew my pain, my frustration, my losses and my gains – even occasionally my joys and celebrations.

Without this outlet, I may have self-combusted a long time ago when I found my multiple sclerosis described by more than one esteemed specialist as atypical, particularly aggressive, resistant to treatment and just plain stubborn.

The Great Scott, my hometown MS specialist, pledges not to give up on me nearly every time I see him but with every frustrating visit where my MS refuses to cooperate and my abilities transform into disabilities like some kind of reverse metamorphosis wherein this butterfly finds herself turning back into a caterpillar, but this time, the catepillar’s tiny little legs don’t work so well, I’m still not so much worried about him giving up on me. He’s an optimistic if rather low-key dude. I’m not worried about you giving up on me either because you’ve been there for me through thick and thin over the last five years of utter confusion that sometimes turns funny in spite of my best efforts not to laugh. Nor am I worried about any of the very many people who I’m so fortunate to be loved by giving up on me either.

I am virtually submersed in the rich, golden aura that all of this hope gives off. I am floating in it, enveloped by the optimism that I sometimes can’t find within myself, optimism that slides over my skin like silk or the gossamer breath of wish-granting fairies invisible to the naked eye. Hope is in the very air I breathe.

Or is it? Because the one person I’m worried about giving up on me is me.

I hold that truth deep in my heart down in that place some of us call the soul and I use all of my strength to not allow it to surface very often. The problem, of course, is that as my multiple sclerosis marches mercilessly on, my strength stores aren’t really anything to crow about. The rollercoaster-like ups and downs of my disease since my baclofen pump surgery have left me winded – overcome at different times with joy and grief, changing from one to the other so quickly that my poor soul can’t really keep up.

I celebrated my first spontaneous step the other day on social media. It happened without thinking. I was chatting along with my physical therapist Aaron, standing in front of the step not even thinking about steps or legs or my inability to get the two things to actually connect when suddenly my right foot was on the step and then my left foot was too.

Aaron looked at me with eyes like saucers and said, “Wait, what?” And we laughed. Because when I tried to do it again (wait for it) I couldn’t do it. But it was ok. That one step was good enough for him. It was good enough for me, too, in that moment. It was good enough for almost the rest of the night until I made it to my second floor to get into bed and realized how much everything hurt and how tired I was and how my legs just didn’t want to lift off of the ground when I took a step later that evening when I inevitably had to pee and then poof! It was gone. That one step wasn’t good enough for me anymore.

The next day was my shower day. My mom is doing well after her fall down the basement steps, shockingly so, but even she needs time to recover so one of my oldest friends had volunteered to do shower duty with me. Her name is Michelle but we call her Foody – there’s a great story behind this particular nickname but this post might be too long already. Just know it has nothing to do with her love of food and we’ll leave it at that. We’ve been friends since my birth. Our parents were friends. Their parents were probably friends. Foody was in my wedding, one of only three bridesmaids in addition to my sister who was my maid of honor.

She’s seen it all with me, quite literally, hence why she’s a person I didn’t feel any qualms whatsoever about allowing her to see it all one more time to help me with the most daunting task I do. I knew we’d find a way to laugh through it and we did which is a good thing because it wasn’t one of my better shower performances. In fact, it required wheeling the goddamned transport chair right into the shower when my legs refused to budge when I attempted to exit on my own two feet. Oh well. Details.

Foody also brought me dinner because she also knows that Meem hasn’t been up to her usual verve and I’m not that great at feeding myself. We had delicious ribs and macaroni and cheese and we had time to actually catch up. I honestly couldn’t remember the last time I’d seen her and it was just nice to have friend time. Kind of like we used to do but with more waiting on me and seeing me naked and crippled. It was like food for my soul in addition to my belly.

I was trying to explain to her how bad things had gotten before pump surgery when I was choking down handfuls of muscle relaxers every four to six hours but getting absolutely no relief. I heard my own voice saying words that shocked me but at the same time I also knew they were true words and maybe needed to come out in front of someone not my mother who would probably never stop worrying about me again had I said the words to her.

“I don’t want to sound melodramatic,” I said, which is kind of humorous in and of itself since I am pretty much always dramatic without intention. “I used to sit on the edge of my bed at night and cry. I didn’t know how I would get into the bed. Or how I would stay in the bed if I actually accomplished getting in. I only had four hour windows to sleep and my pills wore off after two of those hours. I was in constant threat of spasm or actually in spasm. If my legs moved too far in any direction there was a good chance they wouldn’t move back of their own volition and seeing as I sleep alone, I lived in abject fear of not being able to move. It happened a couple of times and it scared me to death. The feeling of paralysis was overwhelming to me. I was afraid of my bed. I was afraid of not being able to move out of my bed. I was just afraid almost all of the time that I was conscious and that was a lot of the time because I could really only sleep in two hour windows.”

I took a breath. “I couldn’t imagine living the rest of my life like that. I mean, I didn’t want to live like that anymore. Something needed to give. I’m not sure what I would have done if this pump had been a bust. I couldn’t imagine living like that for the rest of my life. Afraid of everything. Never comfortable. Not even in my own bed.”

And I meant it. I wasn’t sure how I was going to convince myself that I could live like that if the pump had been a bust. It scared me so much that I’d never actually said the words out loud. People like me don’t think things like that let alone say them.

But the pump did work. And it is working. And I’m not afraid of my bed anymore. I’m still afraid of very many other things though. It just hit me these last few days like a ton of bricks. The simple reality of this situation I’m in now.

I’ve given up the life I had for 48 years before I was diagnosed. It’s not possible for me to live that life anymore. That was clear almost immediately once my abilities began to disappear and my disabilities took over. But it’s also not possible for me not to live that life. I still have to work. I still live alone in a house that has become a lot more accessible, for sure, but I remain incapable of getting down and back up four steps that stand between me and the rest of the world. I don’t know if I will be able to drive when all of this is said and done. I don’t know what my job is going to look like once I can finally be well enough to return to work. I don’t know how to live that life in my current condition. It’s almost impossible.

So, easy, you might be thinking. Don’t. Don’t live that life. Live a better one. A different life where your ability to walk or be physically present in the world isn’t critical to survival or even happiness. Or figure out how to live a life where you don’t walk much at all and get used to using a wheelchair to live your life. It’s being done, Bethy. You even know and admire the awesomeness of the lives of some of your friends who do live this kind of life! Don’t be such a hypocrite! Get used to wheeling around and get out there.

Well. To do that I’d first have to do something about the damn steps to my porch (obvi) but I’d also have to figure out so much more. How do I get around when I can no longer drive myself? How can I find a way to be independent in that scenario? Where can I even go in this old town with its loads of old buildings and cobblestone streets and restaurants and bars without ramps? What could I actually do even if I do accept my life without walking?

It seems so easy on the surface of things!

Sell the house. Find a place to live without accessibility issues. Jesus! If only it were that easy.

How would I even go about doing that? How would I move an entire house full of twenty years full of stuff (and two chairlifts and one accessible bathroom which will probably not do wonders for my resale value). And wait. Where would I even live? I’d need to buy something outright, really, to have any sense of future security. What happens if I lose my job and I have to figure out how to live on disability? I have to minimize costs. I can’t rent some swanky apartment knowing that I may not be able to afford said apartment in the very near future. Ok so find a little place to buy all on one level that is handicapped accessible but doesn’t cost a fortune because you’ve made every bad financial decision possible in the last twenty years and you’d actually fully intended to work for the rest of your life but joke’s on you, Bethy, because that plan was pretty dumb in the first place.

Even assuming I figure all of that out…it’s an entirely new life. An entirely different person lives that life. I have to become that entirely different person. A person who gives up all the shallow silly things that make her happy like hair that needs bleaching every 5 weeks (even in a wheelchair it’s kind of hard to get to a salon reliably when your so-called abilities are literally changing day to day, week to week). People who have legs that intermittently don’t move probably shouldn’t be driving around in fancy convertibles. Or any other car for that matter.

Ten days ago I was doing great. Well. Great for me. This past week, with the exception of that one miracle step, I can barely walk well enough to get around my own damn house that isn’t even very big.

I don’t know how to keep up with the pace of these changes. I can’t physically get plans in place fast enough to keep up with my decline. I feel like I’m playing a gameshow called “From Fab to Drab…MS Edition” where my challenge is to keep up with the constant decline while not losing my damn mind.

I don’t know who I am anymore. I don’t know how to live a disabled life. I see other people doing it and making it look swell. I see the pretty colorful clothes and the cool colorful wheelchairs and the pics from the beach in the beach wheelchairs and the ones who are in loving relationships with their abled partners and I can’t imagine myself doing any of those things. I don’t know how. The decisions seem so simple until you start breaking down all the little decisions that go into the great big ones and your mind literally explodes from the sheer weight of all those little decisions.

I don’t know HOW to do this.

So I do what I’m doing. I kill myself with physical therapy because nobody wants to believe that I’m not going to be able to achieve my goals. My two very simple goals. First, to be able traverse the four steps between me and the rest of the world. And second, to be able to drive my car. Once I can do those two things I only need to walk as far as my driveway. I can have my wheelchair loaded up in the trunk and ready to go. I’m fairly certain most places I go, I’ll be able to get the help I need to get the damn 51 pound wheelchair out of the car and back in again. I just need to be able to walk far enough to get to my driveway. But what if this downward trend keeps up and I can’t even do that? What then? How do I live that life?

I feel like there should be a manual that you’re given once it’s established that your chronic disease isn’t going to play nicely by the rules like other folks’ chronic diseases seem to do.

This manual should tell you how to manage these things on your own when you’ve deliberately chosen a life of independence because you like it that way. There should be hotlines and tips and tricks that explain the whole thing from soup to nuts. Guides who call you up and say, “Oh, hello Bethy, I see here that you’ve been living the independent advertising executive life for a very long time but we’re going to help you transition into one of a few optional lives from which you can choose. You can choose the artsy cripple who weaves macrame and attends accessible craft shows. Or you can choose the solitary cripple who is content to watch the bunnies and the squirrels in the yard from inside the house with wildly unkempt hair. Or there’s another option for the angry old woman dressed in black who scowls at the kids from the front porch and growls at every walker or runner who ventures past her adorable ranch house in the suburbs. Do any of these sound appealing to you Ms. BBAD?”

Every time I see someone with MS post a pic on social media that shows them standing in some cool location out in the world behind the rollator/mobility aid of their choice I am overwhelmed by the desire to pepper them with questions…exactly how long did it take you to put on that outfit? Did someone help you with the shoes? The jewelry…did you drop those earrings 75 times before you left the house? How far did you have to walk to get to this actual spot? Did you walk slow? How slow? No really, HOW SLOW DID YOU WALK? Did you feel like you were going to die at least five times getting to this destination where this picture was taken? How did you get back home? Were you ever afraid you wouldn’t have the legs to make it back home at all? Did someone help you? Is there a wheelchair hidden in the shrubbery somewhere to get you back home or can you really walk that far? Once you got home, how did you have the energy to take off the cute outfit and fancy shoes? Did you sleep in the makeup or did you actually wash your face before bed? DID SOMEONE HELP YOU?!?! And if so, can I hire someone to help me? Is there a service where you find these helper people? Why am I the only one who can’t figure this out? I’M A SMART PERSON WHO USED TO LEAD MARKETING PROGRAMS FOR BILLION DOLLAR BRANDS WHY CAN’T I FIGURE THIS OUT?

I don’t know how to do this and I don’t think I can use the excuse any longer that I’m new to this whole chronic illness thing. It’s coming up on five years. I’m not new anymore. I should have figured something out by now. Every day of my life shouldn’t still be this hard.

I’ve always loved the symbolism of butterflies. I have several tattooed on my actual body because they remind me of the times in my life when big things happened and I turned into something else whether I really wanted to or not. I told myself the ugly caterpillar evolves into the beautiful butterfly and that’s what happened to me in the past and what will happen to me again.

I was researching a bit more about that caterpillar to butterfly metamorphosis recently. I read an article about some scientist who explained that the caterpillar literally dissolves in the chrysalis during the metamorphosis. So, in essence the caterpillar actually ceases to exist. Up until this point I thought the caterpillar changed into this beautiful flying creature by growing wings or something but it turns out that the caterpillar dissolves in there almost competely. Certain cells of the dissolved caterpillar mutate and become something brand new which is the butterfly. My mind was more than a little bit blown with this knowledge. The butterfly, in a way, isn’t an evolution of the caterpillar at all but something brand new. Like a reincarnation in a way.

In a twisted way I can kind of relate to that caterpillar. I feel like my life is being dissolved, broken down piece by piece over time while I’m in this chrysalis that is my house where I’m currently more or less trapped. And it won’t be until it is all dissolved completely that something new will come to be. But the process of that dissolving is freaking painful and tedious and so very very long.

Every day now when I wake up I half expect there to just be a puddle of dissolved former-Bethy cells that haven’t decided what they’re going to be yet. Those cells are confused. They probably smell bad. Because they don’t know what they’re supposed to become and it’s taking too damn long to figure it out.

So, yeh. There you have it. Tomorrow’s puddle of cells will probably just be called hot mess by whomever discovers them because that’s what I feel like. I don’t know how to be disabled gracefully. Someone should really write a manual.