I have to be honest.

I’ve been having trouble writing, this is a full-on truth that I cannot deny but while some of my challenge is definitely mental, a good portion of it is also very annoyingly practical.

I got a new computer, 15” MacBook Pro, all big and fancy but with this Apple laptop keyboard that literally enrages me. It feels weird. I can’t type as fast as I need to type for my fingers to keep up with my brain. Then the cursor just randomly jumps around the page – sometimes landing at the top of the previous sentence or an entirely different paragraph (sometimes it takes me a minute to notice and then I’ve screwed up my entire train of thought) and oh my god why can’t Apple stop making my life miserable with all of their goddamn improvements?

Cheese and rice! It’s enough to make a girl lose her damn mind. Oh. I’m trying not to curse so much lately. How do you like it? Right. That’s about how I feel about it.

My writing is almost 100% spur of the moment. I never have a plan. I usually find words bouncing around in my skull, random phrases that I want to remember or analogies that strike me squarely between the lobes and that’s how a post usually starts. Sometimes they coalesce around a theme or idea. Sometimes they don’t and I just spew whatever it is that is randomly assaulting my psyche because, let’s be honest, misery loves company and I can’t keep all of this crippled old lady angsty proficiency to myself. That would be uncharitable and selfish and I care about you too much to let that happen. But lately some of those random fragments are so beyond random and often quite dark that it’s kind of a challenge to get them down on paper, so-to-speak, in any format that’s even half sensible so I’ve just avoided my annoying new laptop keyboard and moved on to the next show on Netflix.

I could stick to the facts and tell you that my battle with off-the-charts spasticity is beginning to drive me looney. That would be one way to go. I’m so stiff it’s hard to come up with enough words to describe how stiff I feel every minute of every day. That’s a little game I play with myself…

Stiff, tight, taut, brittle, unyielding, rigid, tense, fixed, frozen, solid, stony, inflexible, steely, petrified, unyielding (wait I already said that one)…And I get stumped and have to go to thesaurus.com for more words.

But that’s only part of the story. These word games send my mind on flights of fancy where I ponder some deep and entirely absurd aspect of my new reality wherein I can go down various dark and twisty rabbit holes like…

How many bad days can you have before you have to admit you have a bad life? I ponder this quite a bit. But I always have to admit that I somehow have a great life in spite of all of this crap! And yet the bad days can make me forget that fact for days at a time.

Does the internet understand the tyranny of “use it or lose it” memes? How about the “go for a walk” memes? Do the meme makers of the world understand how apoplectic they make me? Do they care?

Remember when I used to love when it rained? Or how I used to list my bed at the top of my list of favorite places in the world? Well yeh. That was fun but now rainy days cripple me and my bed actually gives me anxiety because it’s in my bed that some of the scariest things that happen to me happen most often. It’s where my body seizes and shakes with cramped muscles. It’s where my legs go paralyzed for long minutes at a time and I worry that I’ll be somehow stuck in bed for days before anyone thinks to come looking for me.

Remember how much I cared about what people thought of me? That was adorable.

Sometimes when I sit or lay down or merely stand in one spot for a few minutes I imagine I can hear my body stiffening up and turning rigid as it’s happening. I remember the whale songs of Botox day and I know those whales are in my body going ham as my muscles freeze up and become something not flesh or tissue. Something scary and painful. I can hear it in my head as it’s happening! Then I talk myself out of it, reminding myself how creative I can be and to maybe stop being so dramatic.

I spend hours researching motorized wheelchairs on the internet until my eyes are crossed.

I’m not quite ready for the official “wheelchair evaluation” according to The Magical Swan my physiatrist and the Great Scott my MS specialist so I have to buy some crazy expensive out-of-pocket wheelie thing (shocker). But I can’t find any of the ones I like anywhere close enough to try before I buy and I need to be sure I can get the thing into and out of my car, myself. And don’t get me started on the reality of my ultra-impractical car. It’s ironic that one of the only things remaining in my life that gives me something resembling joy is driving around in my ultra-impractical car with the top down singing at the top of my lungs.

What if I can’t afford to stay in my house? What are the chances that the generosity I’ve demonstrated throughout my life would somehow lead to the kind of karma where I find a box full of money on my doorstep left by some billionaire stranger who just thought it would be nice to eliminate one major source of stress from my life by paying off my mortgage? Those things happen on TV! Good things happen to good people sometimes! (Yeh. That’s not gonna happen.) So, I stay in the ultra-stressful rat-race of being the most immobile and least physically present senior executive in the history of the cut-throat advertising game. How long can I keep this up? Oh, you will keep this up, little missy, because you have to.

Are my feet still that cold? How can the rest of me feel so overwhelmingly warm but my feet feel like tiny blocks of solid ice? What time is it? If I take my Tizanidine now will it wear off before morning so I wake up on a stone-cold panic waiting for the spasms to begin if I can’t unfold myself from whatever position I’ve found my morning self. My alarm on my phone gives me straight-up anxiety now. It goes off… My calves start to crackle with anticipation of the oncoming spasms. I now get up in the middle of the night usually around 4AM to first, dose and second, do a little impromptu middle-of-the-night stretching routine before I stumble to the bathroom to pee and then go back to sleep knowing the wake-up terrors are just a few hours away.

Can you still consider yourself a strong, independent woman if your mom does your laundry, makes your lunch, cleans your berries (that she also bought for you at the grocery) before putting them in the fridge so they’re ready for your breakfast in the morning? Can you still call yourself an independent woman when your mom drives you to your four doctor appointments in a week?

Can you still be a marketing bad ass when your sister has to drive you to work one day when you wake up on meeting day with legs that won’t hold your actual body upright? Can you still be in charge when your sister has to literally wheel your lame ass into the actual conference room where you then jump right in to run a meeting?

How many days can you misjudge how functional your legs are and find yourself stranded on your second floor without a phone (dumb) but with the TV on downstairs and every door and window in the house wide open so that you have to iMessage a nearby friend who happens to be an angel to come rescue you, before you lose your independent woman of the world status?

Other days aren’t so maniacally scary.

Those days are usually dry, without a trace of humidity. I can usually make it to my car to take a spin between conference calls and updating the latest spread sheet. I pace on my front porch and make small talk with Granny, my 91-year-old neighbor. “You know what I always say, Beth?” I do Granny, because we have this same conversation pretty frequently but I don’t tell her I know. “What’s that Granny?” She says, “Don’t get old. Getting old SUCKS.” And then I look down at my walker as I pace across the porch and I say the same thing back to her every single time, “I feel you on that, Granny. I feel you.” And we laugh.

I’m still working on finding the right balance between moving my legs enough and paralysis. It’s a worthy goal.

I’ve started to do yoga! I have an amazing friend who comes to my house and helps me do the most basic routines that old me would have scoffed at but new me relishes. It’s crazy how reassuring it is to have a strong, able friend put her palm on your back to help you sit up straighter or gently push down your unruly left shoulder or show you a breathing technique to try in the morning when my morning wake-up terrors begin (as they do every single day). I’ve learned that yoga without focusing on my breath is just stretching – which is fine and good too – but the breath really kind of does magical things. I KNOW. I’m humbled. I’m ashamed of my namaste-critical-and-judgey old yoga scorning self! That hour or so I spend with Rachel each week (I’m admittedly starting slow) is starting to be one of my favorite hours ever.

I sit in the quiet sometimes and try to talk myself into being grateful to MS for teaching me so many important lessons. The lesson of humility. The lesson of asking for help. The inevitable knowledge of my physical body that comes from every day being a literal surprise of what works and what doesn’t. The lesson of letting go of pretense and ego and everything I used to think was so fucking important! (oops…I mean frigging important! So much for not cursing.) The lesson of impermanence and being present and authentic. So many lessons! And yet I cannot quite get there. I want to be grateful to MS but I’m currently settling for trying not to be bitter and cursing MS for all of the very same reasons. But I like the quiet – I listen to the windchimes on my front porch and the birds! So many birds. I had to do a conference call from my front porch last week on a breezy sunny day and I had to keep muting my line because my Snow White in the enchanted forest daily soundtrack was less than conducive to serious business doing.

I am struggling to read. I’m stuck on book number 10 of 2019. I just decided to stop reading entirely until I find something I really, really want to read. It’s crazy liberating when you give yourself permission to do exactly what you need to do. Why did it take getting a chronic, progressive disease for me to learn that one???

So yeh. I’m kind of all over the place these days, folks!

I’m not sure it makes for the most compelling blog writing but it is what I have banging around in my nice pink young-looking brain. I am on a teeter-totter of good and bad days that sometimes threatens to destroy me. But I try to let it out. Cry the ugly cry. Give in to second-floor living when that’s what I have to do. Take a nice top-down drive around some pretty Pittsburgh backroads when the opportunity present itself. Try to hold my shit together. I mean my STUFF together.

No, I don’t. I don’t mean that at all! MS has definitely not helped me learn to stop cursing so much. It’s probably not very fucking likely to do so anytime soon, either. And so, the world keeps turning. Bright. Dark. Darker still. Then glimmers of light again. Repeat.