I’m officially 31 sleeps away from my very special Valentine’s Day date night with Dr. Nestor the Long-Eared neurosurgeon and the pieces are starting to come together.

I’ve gotten my pre-op testing appointments set up. I’ve scheduled my pre-op medical check with my primary care physician. I got basic instructions from Dr. Liang about what will happen in the weeks post-surgery (hint: it definitely involves an inpatient rehab hospital stay so I wasn’t crazy after all). During this inpatient stay I will start to wean off of my oral meds, work with a doctor on staff on calibrating my baclofen pump dosing and begin physical therapy to get me back on my feet. All good stuff, to be sure. I’m actually relieved about the rehabilitation plan. I had been worried about the details of taking care of two wounds (one on the front and one on the back) as well as taking care of myself and my animals. I like the idea of starting to get a bit stronger before I’m back home on my own again. I even got word this evening that my live-in pet sitter of choice is available for the weeks that I need her. How lucky am I? I was so relieved I could have wept.

Here’s the thing, though. Knowing there’s a light at the end of the tunnel doesn’t make being in the tunnel any more fun, now, does it?

No, no it does not. This tunnel is doing its level best to threaten my very sanity.

I’m to the point now that I don’t leave the house for much at all. It’s just too hard to time outings around my oral medication dosing and when my meds might be working versus just flat out leaving me stone stiff from the torso down. I might be able to get out of the house but it’s hard then to get back in. There’s also the little detail about the way it feels to drag around solid stone limbs in the outside world. With all of my many assistive devices, none of them make it any easier to make my legs not spasm or refuse to move at all. Even if I could get into the motorized wheelchair, it’s hard to keep my legs on the foot rest when they stiffen up like they do about three hours before I can take my next dose. There’s also the fact that when I sit for long periods of time when I go to stand up again (which one simply cannot avoid) my legs will just refuse to move at all. Not terribly practical.

I’m working hard to take a Zen approach to my confinement, as I’ve come to call it. I mean, it sounds kind of poetic when phrased in Victorian terms instead of just out and out calling it what it feels like (being stuck inside a prison of my own making). I started doing yoga a few months ago with a personal instructor inside of my home. I’ve come to value these sessions with Rachel my yoga instructor so much but they go beyond even the time that she’s here in my home contorting herself into maddening positions just to help me keep mine in some very basic pose or other. My yoga instruction is teaching me how to breathe, which I would have told you before this that I knew perfectly well how to do but I’ve since learned that I need to do it a little differently when I’m in some kind of physical crisis mode and I’m in some kind of physical crisis about 80% of my waking hours.

Before my eyes open in the morning but I’m beginning to wake, I breathe through the horrible realization that I can’t move my body from the torso down. I breathe through the process of getting out of the bed because moving the parts of me that do still move, like my arms for example, sometimes sends the lower extremities into spasm and I have no idea why. I gingerly move the body pillow at my back away from my body in super slow motion. Then I very slowly try to fling my sheet and comforter away from my folded-up body so that I can grab my legs more easily when that time comes. Flinging covers slowly is harder than it sounds. Sometimes it takes me two or three slow flings before I am freed.

My legs are still folded and tightly around the foam pillow I keep between my legs to keep them spaced apart for maximum pain reduction. It feels like I need the jaws of life to get this pillow out from between my legs that have been clamped in their bent position for several hours. When it finally pops free from its prison, I remind myself to breathe again as I lift my upper body ever so slowly and slightly to allow my arms to lift my right leg and position it at a 90-degree angle on the bed so I can twist my body flat on my back before attempting to get my legs off the edge of the bed. Then I breathe through it again to do the same for my left leg.

My overwhelming morning spasticity often doesn’t want to allow my feet to stay in place, it makes them want to slide out straight in front of me, but I can’t allow that to happen or I’ll be in spasm from the top of my hips to the tips of my toes and if that happens I’m done. Peeing the bed will almost certainly happen next and I can’t let that happen (who’s gonna change the damn bedding?) so I breathe in and out slowly through my nose while I hold each leg in place for as long as it takes until my feet stay put on the bed and I can shimmy my way to the edge of the bed to try and stand up. I’m doing all of this while one cat or another is trying to nudge me out of bed or more likely pounces on my full bladder in an attempt at some early morning play.

Once I’ve gotten myself out of bed, dosed myself with my various muscle relaxers and other magical pills, feed the kitties and myself and scooped litter on two levels I am nearly able to move my legs a little more but now I’m so exhausted from dragging around dead limbs through my morning rituals that I have to go back to bed and then perform the whole peeling, unfolding and dragging myself out of bed again for the second time each morning. I’m wearing the finish off of my floors from dragging my dead legs around.

Nighttime is also traumatic. I try to time my dosing so I can situate my legs in my bed at the optimal angle for spasm prevention while attempting to distract myself with television. I’m watching Homeland currently, late to the game of this Showtime series. It’s long enough that I was hoping I could use it to help me get through these next 31 days before my surgery with maximum distraction. I try to read at night like I used to do but I can’t relax enough to focus on the words.

My days and nights are overlapping with each other with alarming similarity. I get into a monotonous loop of counting down the hours until my next dose, most of the time realizing with horror that I am two or more hours away from the next one when my legs turn solid as rocks again. I’m exhausted from what little movement I am able to accomplish so I feel as if I’m sleeping my life away. I haven’t been able to drive in months, certainly not with these legs, so I actually use the remote starter to let it run for ten minutes each day hoping it won’t just die from lack of use. It was 71 degrees last Saturday, a crazy aberration in January in the Northeast, and it killed me not to be able to take a drive with the top down even just around the block.

I’m sick of looking at my own face in the mirror. I’m bored to tears with my clothing options. I switch up my twice daily skin care routine just to have something to do. The truth is, my skin is never dirty because it never leaves this house so it’s completely unnecessary, all of this fussing with multi-step skin care routines that I do, but it’s become somewhat of an obsession for me just to have something to do. If I ever do make it to the outside world again, I’m going to look like I’m 25 again.

All of this is to say that I think this might be my version of a marathon. I was never the sporting type. I never liked to do anything that required me to push myself to those kinds of limits. It just seemed ridiculous to me. Why make yourself feel that bad just so you could say you did? Now that I’m in my own marathon of sorts I think it’s even dumber. I’m not sure what happens at the end of mine. Am I mentally tougher? Do I know that I can do anything that comes my way because I was able to do this? I don’t think either of those things will be true because whatever MS throws at me next is likely to be almost entirely different than this. I can’t prepare myself for it. There’s really no preparing for any of this. There’s just getting through it.

I have a few friends with MS who are in the midst of their own version of my loop with terrible, awful, debilitating symptoms and it blows my mind how gracefully they are at managing. I want to live up to their example but I fail every single day. I cry the expensive skin care right off of my face some nights right after I’ve put it all on. I try to tell myself that this can’t last forever, it won’t last forever, I know there is some kind of relief in sight but it just doesn’t help when you find yourself in that moment.

I’ve taken to finding peaceful moments in the tiniest of things. In the early morning hours before the sun is fully up but I’m up cleaning up the cat bowls in front of the window by my sink and I look at the sky. One morning last week it was foggy and I could see a line in the sky between white and gray – as if the sky was split in two by a painter. I wondered what lived in that space where the two colors met. A moment later a flock of black birds flew from gray to white and disappeared before my eyes almost like magic. As the sun came up I watched the squirrels in my backyard running around from skinny branch to skinny branch, chasing each other, obviously as confused as I am by spring in January.

There are also birds out there in this strange warm weather. It makes me remember the time my friend Sandy and I ran into another friend, Eric, at the pet food store. He looked embarrassed by the two giant bags of bird seed in his arms. He kind of laughed when he told us that he felt like he’s reached maximum old man status when he started getting enjoyment out of feeding the birds in his yard. See, I used to see Eric at all of the industry happy hours over the years, out just like me seeing and being seen. Now he was buying bird seed. I wasn’t sure back then if I liked the idea of Eric raising kids and feeding birds but I think I understand now.

I am finding what little peace I can looking at the world through the windows of my inner world. It’s all quiet out there from in here but it’s still happening – the little things I never cared to notice before. I never cared about squirrels and birds and the subtle color shifts in the sky or the sound of the wind. I mean, maybe I did when my life settled down for a minute or two, when I stopped running around so fast for a few seconds. Now those moments feel like everything. They’re what I have right now so I cling to them for dear life.

Thirty-one sleeps. Then the work of coming back from surgery. I wonder what it’s going to feel like when I can go outside more often again? I wonder if I will still have a place out there. I wonder if I’ll like the place I find.