It’s been a while. I keep thinking to myself…You really should write something. You really should take the time to get your thoughts on a page – figure something out. Tell some kind of story about what’s happening to you, share a slice of this weird life you’re living now.

That’s the thing that keeps hitting me over and over again lately: this is my life now. This isn’t some fugue state of transition, a place where I’m hanging out waiting for things to settle down, some kind of waystation on this chronic illness journey I rudely find myself traveling.

This is my life now. Who really wants to read about that?

In some ways this is probably a break through. In some ways, acceptance is probably leaking into my consciousness. I no longer feel like I have the luxury of calling myself a newbie in this MS life. I’ve been living this life for almost four years now! Four long, crazy-ass hideously unpredictable years where I told myself that I was getting through something. I told myself this was a transition. This wasn’t my life. This was a phase. Something to fight. A problem to solve. A twist in the movie of my life where the audience would probably feel sad and a bit worried about our heroine but there was always the underlying promise that she would triumph. She (I) would win the battle. She’d (I’d) beat the odds. She’d probably make the audience laugh a bit along the way – shed a tear or two but in the end? In the end she’d win. She always wins in the end, right?

I’m not sure that’s what’s happening anymore. I am facing the reality that this is my life now.

I swing back and forth between feeling overwhelmed with gratitude for the ways my world and the people in it have accepted this new reality of mine while at the same time being so consumed with anger that words fail me completely. I built my life with purpose. I created my own reality – a reality I fought hard for and shaped with intention. I didn’t accidentally find myself in a foreign place in my late forties, confused by the events of my life wondering how I got there. I chose this life. I crafted this life. I cared for it for long years, thoughtfully considering what would make me happy. I loved this life. It wasn’t always perfect but it was mine. I made it all by myself with a hefty dose of luck and good fortune. It felt right. I felt right.

Until suddenly I didn’t anymore.

I’ve been swinging wildly between thinking I’m getting better at this new life of mine and minutes later I’m in a ball of anxiousness and fear where tears shoot out of my eyes just watching life pass me by. I am almost fine in one minute, then it hits me that I can’t just get up from my chair and walk into the kitchen and get myself a glass of wine or something to eat or walk up the stairs to use the bathroom. I can’t just get up and walk out the door and sit on my porch. I can’t just walk to my car and take a quick drive, run an errand. I can’t just wake up and get out of bed. I can’t lay around happily in bed wiling away the hours on a cool Saturday morning with the breeze blowing the curtains gently and purring kitties snuggled up with me. I can’t just get up and do anything anymore. Every little thing I do, I have to think about, plan and consider. I need some tool, some support or even just the pure energy to make the tiniest things happen. There is no “just” doing anything anymore.

Just was my old life. This new life? It’s work. It’s uncomfortable. It fucking hurts almost all of the time and I’m not sure how to handle that with grace. I’m not sure I even want to. I daydream about how easy things used to be five or six short years ago. Even when things were hard (and they were often hard) they were easy. I just didn’t know it. I didn’t know enough to appreciate that ease when it was mine. I didn’t know any better. I was blissfully ignorant. I didn’t have to worry that I’d been sitting in one position for too long. I didn’t have to wonder if I could walk without holding on to something, anything, to keep me on my feet. I just did it. This new life is unjust.

But here’s the thing. This new life is also mine and even if I hate it, currently, I am starting to understand that I have to find a way to appreciate it. I have to find a way to live it and make it OK. Here’s what that involves: a lot of planning, strategizing and management. It involves writing down when I’ve taken which pills so that I don’t take the wrong ones at the wrong time and find myself too stiff to move or conversely too weak to support my own weight. It’s a delicate balance. There are many chemicals involved. I’m grateful for them but I also wish it didn’t take so many magic beans just to climb a flight of stairs or to unfold myself from bed each morning. But the magic beans make those things possible so I dutifully swallow them and I note in my phone what I took and when and how much. These are necessary things now.

Then there’s the stretching. I stretch like it’s my job. I wake up in the middle of the night to pee and I can’t walk to the bathroom without a five-minute stretching routine that involves the bedside table, several pillows, a yoga strap and the iron lattice work on my headboard. I lace my fingers through my toes stretching them wide apart so that they eventually feel like flesh and bone instead of little stone appendages. I knead at the balls of each foot until they are ever-so-slightly more pliable and not hard like wooden-soled shoes. I ball my hand into a little fist and jam it into my left butt cheek until the pain that lives there screams a little less loudly. All of this means that I now sleep in spurts – three or four hours at a time – in between stretching sessions and the popping of a pill or two at regular intervals. Then I fall back into bed, rearrange the plethora of pillows back into the right supportive spots and I sleep for a few hours until it all starts over again when the spasms or the pain wake me again to start the whole routine over again. Mornings? They’ve never been my jam, but now mornings involve a goddamn process. Mornings are slow and deliberate. Mornings take me a lot of time.

I’ve learned some things, too. Yoga is teaching me to breathe through the stretching, breathe through the pain, breathe through the spasms. It surprised me to realize just how often I was simply holding my breath throughout my day. Throughout my damn life! I remind myself to breathe, drop my left shoulder, fill my chest and gut with breath – puff it up like a giant balloon and then feel it deflate as the air leaves my nostrils. I hear Rachel’s voice in my head – she’s my friend and yoga instructor. Her voice soothes me even when it’s imaginary in my head. Puff out the belly taking the breath through my nose, feeling it contract as I push the air out through my nose again. There you go. I’m not in control of most things but I am in control of allowing myself to breathe so I focus on that. I focus on that often.

In my last session with Cheryl, my therapist, she let me wax on for a while about how much I missed my exciting old life. She let me reminisce about how happy I used to be, how every day presented me with so many possibilities – how even my annoyances were so petty and shallow they hardly mattered. She really let me go on. I should have known she was up to something as she hmmmm’ed and uh-huh’ed on the other end of the phone. I finally took a breath, sniffling my runny nose from the tears that were falling. That’s when she started talking.

“I was there back then and I remember all of that, too. I mean, our sessions back then were full of drama and excitement and yet I remember something else. I remember how much pain you were in at times. I remember how much you hated yourself a lot of the time. I remember how you loathed yourself so much that you tortured yourself with bad decisions, questionable dalliances, behaviors and extreme situations where you probably weren’t even safe. I remember most how much you hated your body and how much you tortured yourself over it. I remember how you used to hurt yourself just to feel something. Anything.”

“I remember that too, now that you bring it up,” I said. “It’s funny how that’s not what I remember first. Or hardly at all. It feels like so much wasted time! So much wasted time hating on a perfectly healthy, useful and functioning body. I wish I could go back and enjoy it. I wish I could go back and become more aware of how amazing my body was. How wonderfully it functioned. I was totally careless with a perfectly healthy, wonderful body. How could I have done those things?”

“And now?” she said.

“Now I am 100% aware of my body at every moment, conscious and sub-conscious. Awake and asleep. I’m never not doing something to try and care for this broken, dysfunctional body and none of it helps. Ten steps or two thousand steps – nothing matters. I stretch and massage and cajole just trying to help my body feel cared for so that maybe it will be better for it. But it feels futile now. Nothing works. It’s just…it doesn’t listen even when I’m kind to it. It’s frustrating.”

“You keep wondering what your purpose is now. Maybe your purpose is you. You do it all for you. You used to find yourself too self-centered back then…but you weren’t. You never took care of you. You put yourself at risk on a regular basis. You didn’t do things that were hard to take care of yourself – you did things that were easy (easy for you, even if they were hard for other people).

NOW…this is your purpose. Your purpose is to care for you. You are forced to do it. It’s mundane but you have to do it. You have no choice. The purpose is to survive,” she said.

“But what’s the point of survival when this is what it is?” I said to her.

“That’s what you have to figure out. That’s what we will figure out together next,” Cheryl said.

There’s something to ponder. Therapy is deep, y’all.

I’ve had some nice things happen between all of the pill popping and note taking and stretching and working and what not. I had a lovely episode of porch wine a few nights ago. It was really hot that night and I was careful not to drink too much so as to muck up all of my magic bean-infused body chemistry. My friend did have to help me lift my leg up to get back into the house. But it was ok. It was more than OK. It was actual fun.

I’ve finally realized that working from home is actually really working. I’ve stopped beating myself up for not being more physically present. I waste a lot of energy beating myself up for not being able to do things in the same way as old me used to. Thanks to Cheryl for reminding me of the lesson of wasted energy. Just in time, probably.

I’ve started working with a writing coach who is going to help me figure out how to do the one thing I’ve always wanted to do: write a damn book. I am intimidated the minute I put those words in black and white. What if I can’t do it? What if I don’t do it? But what if do? I guess we’ll see, won’t we? Right now, I’m trying to find the energy and time to tackle the writing exercises she gave me to do. I had to get to this blog post first. I just had to. I needed to get this out. I’m not sure it will help me (or anyone else for that matter) but I’ve had words knocking around in my head for a couple of weeks now. They needed to get out. Even if they aren’t the best or most coherent words. Thanks to you people for reading them.

It helps. It really helps. Because this is my life now. And you’re helping me figure that out. Lucky you.