I know it’s been a very long time. I’m not here to review my struggles over the last few months since last I wrote because things really haven’t changed much. Quick recap maybe? I suppose it’s probably best to write an entry with some context so things make more sense, so here we go…

I am a full-time power wheelchair user. I can no longer stand. Because of the no-standing thing I have state-subsidized caregivers 16 hours a day who help me move my person from place -to-place (the program for this funding is called ACT 150 if you ever find yourself in need in the state of PA).

These caregivers used to be here 24 hours a day but I was paying private pay rates for those extra 8 hours that the state of PA felt were a bit much for them to give me. Even the subsidized hours are making me go into debt so deep I will never get out of it so those “extra” 8 hours that made me feel safe simply had to go. So I spend the nights alone and it’s mostly ok. Sometimes it’s not. I don’t really even want to write about those times or how hard it is to find the right staff for these jobs since my needs are complex and rather difficult.

But as with most things, time does her job even when you try to fight that bitch with everything you have. In spite of myself, I’m almost used to not being alone. Sometimes I am absolutely not ok with being alone. Can you even imagine? I know. Who am I?

I’m still me somewhere way down deep. Really, really deep (I’m smirking). So I’m going to try something new. I’m going to tell you a story about how my sister and I have come up with a special code to deal with the dreaded question that stumps me every time it is asked. The question?

“How are you doing, Bethy?”

Ugh. Intentions are always good! “How are you doing?” is such a normal, kind thing to ask. And it gets me every time because there is very rarely a response that isn’t, “Well…I’m riddled with anxiety because of loss of function and trying to find qualified, reliable caregivers for seven days a week from 7am to 11pm is pretty fucking painful and no we haven’t fixed my catheter issues so I’m still not sleeping and that’s just terrible for everything because the not sleeping puts my pain into overdrive and I refuse to take oxy so I have to power through the pain caused by lack of sleep and stress.

Have I mentioned stress yet? Because yeh. I’ve gone from being a “chief” in a global organization to being a full-time sick person and it turns out that my mother WAS indeed right when she told me over and over again how money doesn’t actually grow on trees. Childhood me really hated that quip. Adult disabled chronically ill me keeps wishing for a magical money to pop up on the grounds here at The Hidden Falls Home for Crips and Wayward Women. That is a very silly thing to wish. This isn’t a fairy tale where my fairy godmother can appear to save my suddenly broke ass. There is only that question that hangs out there like a giant rock about to be dropped on my head.

“Hey Bethy…it’s been a while how are you doing?”

My sister and I talk nearly every day by phone or texts. She always asks me how I’m doing. I mean, it would be rude not to ask! I appreciate the asking I just don’t often know the safest way to respond. What do I mean by safe?

You see, I am very superstitious. I blame MS for my superstitious behaviors but the truth is that I’ve been this way since I became a widow at the ripe old age of 30.

I had a rule that stated I would never ever love my life out loud ever again because it seemed as if every time I ever allowed myself this luxurious thought something armageddon-like would happen shortly after. Like my perfectly healthy and robust 30-year-old husband dropping dead out of the clear blue sky. Or getting a call that says, “Well, it looks like your MRI looks like a textbook MRI of a woman with MS,” after three years of being told how healthy you are.

“Bethy how are things? Are you feeling any better?”

GAH.

There are some days that aren’t catastrophic, where my unruly body is at baseline levels of terrible and I always want to say, “you know? I’m doing ok. Today is better than yesterday (again, I kind of gloss over how low that bar truly is) but “I’m doing ok today” isn’t always a lie.

Most of the time, though, my answer to “how are you doing” involves something horrible and trope-y like my usual response which is, “oh. I’m doing my best. That’s all I can do.”

Now that I don’t have work to give me the illusion of a life outside of my multiple sclerosis, my voice does this bizarre sing-song quality that I don’t even do really well, and I make light of the whole thing. “Oh, I felt semi-ok-ish today for the longest period of time so far like it had to be at least four minutes that i forgot about it all and the painful memory of a life that seems like a dream now that it has come to an end. I was semi-ok for exactly one hot minute.”

You did say you wanted to know the “real” me, right?

My sister texted me one night with an idea. She suggested that we come up with totally random words to replace feeling “good” or bad so our superstitious crazy selves could actually have a conversation without tempting the Universe to give either of us something even more dreadful to deal with. I loved this idea! But what would our words be?

“Well, if things are quasi-ok-ish let’s use this 🥕 and for days that suck more than the usual level of suck let’s use this 🥬! You love carrots and nobody loves cabbage. I think it’s perfect!” I didn’t have the heart to tell her that I kind of love cabbage but I wasn’t going to nitpick our handy new code.

We talk every day, as I said before, and each call ends with “I wish you more carrots than cabbage today dear sister.” Then we actually laugh. God I miss laughing!

The carrot experience always involves laughter whether it is over something ridiculous I say or medical-weed-induced belly laughs. I’ll use chemicals to achieve carrots if I have to! Sometimes, we all have those days, when the chemicals end up making us feel worse and BOOM here comes the cabbage. Cabbage city. Like buried in cabbage from the bottom of my wheels to the top of my care-giver haircut.

Cabbage is still my normal state of being. This whole acceptance thing is a bitch. I asked my friend Kara how long it took her to be able to achieve the ability to try ignoring some of the more annoying symptoms. For example, I’ve been feeling my feet and legs get tighter and tighter and more swollen than I want them to be so every five minutes or so I roll back from the desk and stare maniacally down at my foot plates. I’ll ponder silently…do they really look more swollen or do they always look like that? That shade of purple-almost-black color that my feet are turning the longer I sit here is extra special. Also my feet are like ice because I’ve finally given up on those hosiery of the devil, my compression socks. That was a 🥕🥕🥕 experience. It seems the socks were somehow not helping as much as the pain of the socks was killing my soul from the inside out so I just stopped. I JUST STOPPED WEARING COMPRESSION SOCKS.I know. It’s like a whole new world has opened to me. Instead of Satan’s hosiery I use my fancy Permobil wheelchair to elevate my feet occasionally but to be honest I’d have to lay in that crazy legs-above-my-heart position all damn day to really make a difference and I’ve grown tired of sleeping upside down in my wheelchair. It’s shockingly uncomfortable! Also very disorienting when y0u get back to normal levels. I should be elevating right now! But I’m choosing to spend this time attempting to finish this post that I started more than a month ago. I might regret it. There may be cabbage in my very near future.

I digress because Kara’s answer was (wait for it) TWENTY THREE YEARS. When you are very very disabled amd very very sick most of the time you want acceptance to just show the fuck up already. Turns out that’s not the way acceptance works.

The bottom line here is that sometimes you choose cabbage when the thing you’re doing is something you’ve really, really missed too much to explain with actual words – in this case writing. I miss writing. I miss all of you. I miss words coming from my brain out through my fingers even if i have to use the one-finger-method of typing (yes…I tried dictation and it’s a hard NO from me).

My friends. I’m about to begin the process of getting out of one chair into another where I can comfortably elevate my legs – a process that involves another human helping me on to the toilet one more time before I get in my relaxing recliner (not my sleeping recliner that are actually the very same chairs they just reside in different rooms). There’s the 8-10 step skincare routine, even if the products are cheap I can’t give up my skincare obsession. And just a reminder…my psychologist tells me smiling has an actual positive effect on your brain. Even if it’s a kinda fake smile! So here I am. Cabbage or carrots? I’ll let you know another day.