Well. He really isn’t that hot per se. He is a rather twee little man who wears very slim trousers that stop about 3 inches above his ankles with a little half cuff. He wears multi-colored striped socks with his European square-toe loafers and geometric wire rim glasses on his super bright clear blue eyes. I thought he was very young at first glance but a closer inspection his face shows some feathery wrinkles around his eyes and more salt than I saw initially in his super short light brown hair.

His name is Nestor and he’s my neurosurgeon. And we’re spending Valentine’s Day together when he will cut me open and put my new magic hockey puck in my abdomen then connect it to my spinal cord and hopefully, according to Nestor, be life changing for me. Whoah! Pump your breaks, Nestor. Don’t go getting all overly promise-y and optimistic on me! I’m a stolid realist, Nestor, and your claims of changing my life after one date on that special day reserved for the most special relationships, is veering very close to dreamland. I’m much more comfortable with dates who under promise and over deliver. Let’s focus on my goals and remember what we’re dealing with here.

My goals are pretty simple. Both Nestor and his PA Nicole validated my goals as “totally realistic” which made me feel pretty good. I want to get off of this crazy every-6-hour pill popping train that leaves me paralyzed and panicky around hour 4. I want to sleep without feeling dread about waking up in the middle of the night unable to move and too far from my meds to pop a few into my mouth and hope they kick in before I pee the bed. I would very much like to be able to leave my house every now and then. I’d really love to get myself to my office more often. That’s about it! Both Nestor and his PA Nicole validated my goals as “totally realistic.” I mean I might have a few other less practical goals in the back of my mind…like maybe a vacation some day? Maybe go on a date? Have sex again? Wait! Now it’s me getting all starry eyed and moony. I need to keep my head on straight and focus on the fact that this surgery is not a small thing and I will have a 4-6 week recovery which might flare all other manner of MS symptoms. I will have to manage the taper down from my current oral medication regimen. I will need to build strength, balance and coordination. It’s daunting to realize how much 24 months of constant worsening of my spasticity has affected my body in general. It’s going to be a long road back to the land of the living.

The truth is, I’m not sure what the land of the living is like these days. It’s been two years, y’all. Two years of confinement, barely able to leave the house. Two long years of thinking about my spasmy limbs 24 hours a day seven days a week. It’s been about 730 days of me being consumed by my failing body, unable to see any light beyond the next oncoming train. It’s been approximately 17,520 hours of feeling a hopelessness so complete that it threatens to consume me on a daily basis – it even crept into my dreams and ruined any hope of restful sleep. Its been 1,051,200 minutes of fighting darkness even in the minutes where I stubbornly insisted I could be bright but never quite making it there.

I lay in bed last night waiting for hour three of my meds to pass putting me 3 hours closer to my next dose of muscle relaxers, wearing my grippy socks so my legs remain bent at a 90 degree angle for preventing spasms, mildly distracted by the pain in the bottoms of my feet. I was trying to distract myself from my ever stiffening legs with television but noticing odd things in each scene of Homeland. That’s a lot of running that Carrie whats-her-name had to do to escape from the terrorist guy. Look at all of those steps to get into the CIA building! Whoah, that safe house is like a disabled person’s wet dream! No steps, wide open spaces, not one step in sight not even out on the balcony. Oh look. They’re walking into a bar and choosing which bar stools they will sit on. I wonder if I’ll ever walk into a bar again? Can I even get up on a bar stool anymore? Two more hours until I can take more pills…

How do you go forward after standing still for so long? There’s no going back to my old life. I’m still sick. I still have a chronic progressive disease that is likely to continue getting worse. I am afraid to hope that I might get some of my life back. Or get a life, a new life, is probably more accurate. Some kind of like that doesn’t confine me to my living room. Some kind of life that involves actually living and not just waiting for the next bad thing to happen. But even if I get this one symptom under control, it’s still just the beginning. It’s not everything. It’s just this one thing. Maybe I’m pinning way too much on this one thing! Maybe not much will change at all. Why am I so afraid of hoping for something to change?

I just want a chance to figure out a way to live with this. I just want to figure out how to stop allowing this disease to consume me. I want to be one of those “MS doesn’t have me” people from the commercials but I’m not sure I have the capacity for that kind of hope. How long do you live in a particular situation before it starts to feel like things will always be that particular way? I guess I’ve been in this situation before but it was for good. When I was happy, I allowed myself to believe I would always find a way to be happy. Then this whole MS mess happened and I lost that faith. I felt like it was gone. All of my happy was gone. And I started to believe I would always be sad and broken. It had finally caught me! The pain I have always been so sure I somehow deserved.

I want to have hope. I want to believe that this story isn’t going to end with me being confined to my house, being driven around by family members from house to house from doctor appointment to doctor appointment. I want to believe that my life isn’t going to just be this. This thing it’s become over the last four years. I want to believe that good things will happen to me and for me again. Why is that so hard?

It also feels like a lot of pressure to put on this weird little machine that will be embedded in my abdomen and connected to my spinal cord by a skinny little cord by a skinny little man called Nestor the neurosurgeon in square-toed European loafers. What if it doesn’t change things much at all? What if it’s just a small improvement but not enough to make a real difference? I wish I knew what to be hopeful for! I am far too realistic for blind optimism. I’m wishing for some kind of guard rails to put around the hope I want to feel. Unguarded hope feels far too dangerous to me right now. But the complete lack of hope feels equally as impossible.

I hope Nestor knows what he’s doing. I hope I have it in me to make it through the 6 weeks between now and February 14. I hope I remember how to have enough hope to make it through those 6 weeks but not too much hope that I curse myself with ridiculously high expectations.

Once my sister wheeled me back to her car and got me and my gear and her and her gear loaded up and began to pull out of the parking garage, I looked at her and said, “Did you hear him say the words ‘life changing’ or did I make that up?”

“No, he actually said that,” she said.

Jesus Christ.

It was almost 4PM by the time we got home, exactly one hour before I needed to pop my magic pills. I dragged my legs up the steps to my front porch with great effort but I did it myself. I got into the house and noticed that my house was clean. I could smell the distinctly wonderful aroma of Murphy’s Oil Soap in the air. My cleaning lady put my mail and packages on my kitchen table. I sat down to take my sneakers off because my feet had gone completely numb. I noticed the package on my kitchen table was from Mongolia…I got a package all the way from Mongolia! Inside was a lovely note from a wonderful friend who lives in Mongolia who thought of me while shopping for winter clothes at her friend’s boutique. She sent me a yak down sweater. It’s so soft and warm! Sometimes the kindness that I am surrounded by really overwhelms me – in the very best ways.

Only 39 days. 936 hours. 56,160 minutes to hold my shit together before the next big phase of my new life begins. At least I’ll be warm?