I’m sure it will come as no surprise to any of my readers that I was not looking forward to the Christmas holidays this year.

I mean, I’m not terribly subtle for one thing. I’ve been quite outspoken about the open struggle that has been my 2017. It seems like this year, that was supposed to have the promise of a new miracle treatment and a new lease on life for Bethybright, has been one disaster after another. I’ve gone downhill so fast, its left me dizzy. I can count on one hand the number of truly good days I’ve had since going off of Tysabri in January 2017. This Christmas was going to be the one when I could look back on the time that has passed since I was diagnosed just before Christmas in 2015 and say to myself, “Wow, these past few years have really sucked but it was all worth it because now I feel so much better and I feel hopeful for the first time in a really long time!”

Yeah. Or not?

Christmas is usually one of my most favorite things. But like many of my reliable favorite things of the past, it’s complicated now. Just like everything is complicated now.  I want to feel festive. I want to help with preparations. I want to enjoy time with those I love most but the simple truth is that just the act of leaving my damn house is a major issue these days and it’s really starting to get old.

It snowed on Christmas eve. I woke up to a white Christmas morning and it was beautiful and lovely and quiet. I lay in bed snuggly warm enjoying the simple pleasure of the overnight snow outside, the warmth inside, a cozy bed warmed by four furry creatures who are generous enough to share their body warmth with me. It was early, really early because that’s when those furballs wake me to be fed so I got myself out of bed, down the stairs and fed the kitties. Scooped litter downstairs and before heading back up to bed for a little longer to rest up for the festivities ahead, I peeked out the front door to look at the pretty snow.

I noticed, the lid had flown off of my tub of ice melt on the front porch. I  opened the door thinking I better get out there and put the lid back on before the thing blew away when I noticed that my front porch looked shiny. It was a solid sheet of ice, rippled, like tiny frozen waves, made by wind that blew through the night. I gingerly stepped outside in my outside slippers, carefully grabbed the ice melt bucket lid, very slowly tossing some ice melt across the porch and down the steps to my sidewalk below, shivering all the while because I’m still in my pajamas. I crunched back to the front door being a little less in mortal fear for my life and went back to bed.

It dawned on me, though, that I wasn’t going to be able to drive myself and my mom’s to my sister’s house where Christmas day brunch was to take place. My sister lives high atop the world’s steepest driveway, affectionately dubbed Mt. Doom. Any snow at all makes the approach to my sister’s house nearly impossible without 4-wheel drive. I was supposed to pick up my mother and head up to my sister’s but I knew if it was icy at my house, it was definitely icy at my mother’s house. I realized that I’d be basically of no help whatsoever for getting my 77 year old mother from her house to my car while also carrying the homemade danish pastry she had to bring to the brunch, across sidewalks made of ice. The truth is, my mother is almost more capable than I am but neither of us should be out traipsing around on icy sidewalks.

Change of plans. We needed transport. My sister has a Suburu that would have no trouble getting us up Mt. Doom, safely and with the precious danish pastries intact. Alex, my nephew, came to pick us up and get us safely to the Christmas feast. All good! Disaster averted. Having an amazing family willing to drop everything to make things easy for you is kind of awesome. And yet, there I was sitting in my funk, thinking to myself how much I hated the entire situation.

Something as simple as the weather can fuck up my entire day. I’m so unsteady on my feet that even a little snow or ice renders me basically useless. When it’s too hot, I can’t function. When it’s too cold, I can’t function. Low-key stress-free holiday fun all delivered without my help or support should have been perfect (and in many ways it was) but it bugged me that I wasn’t able to help with any preparations at all. I didn’t hang one single ornament or bake a single cookie. I didn’t do more than wash a few dishes, and barely a few. I did nothing. Nobody asked me to do anything, of course, because they all know that it will probably be too much for me whatever the ask might be. Hell. My only job was to get my mother to the brunch and I couldn’t even do that because I needed help my damn self.

Earlier in the week, I had a hair cut appointment in a busy part of town during the holidays. I was feeling ok that day, not great but not terrible (otherwise known as my general state of being), so I headed out not at all worried about the task. How much easier can it get? Drive to the salon. Park. Get into the salon. Sit. The end.

But it was the Friday before Christmas so people were everywhere  scurrying about getting last minute gifts or meeting friends for festive holiday drinks, doing what normal people do during the holidays. I couldn’t get a parking spot in front of the salon like I normally do. The only handicapped spot on the street was an entire block away but it was my only option. I hadn’t brought Stanley, my cane, because I’m still not accustomed to the fact that I’m likely to need him if I have to walk any distance at all. I stumbled the one block to the salon. I was dizzy and shaky. I could see people looking at me drunk walking down Butler Street trying to pass me because I was moving so slow I was barely moving at all, feet occasionally dragging. I made it to the salon but I was on my last legs. I knew I had to repeat the whole thing in the opposite direction again once my haircut was over. I sat there wishing my hair cut could take longer. I didn’t want to go back out there again. I felt so far away from safety. It was unnerving. Safety was literally less than a block away.

I love that people make things easy for me. From work colleagues to family members to friends and neighbors – I am surrounded by people who want to help make things easier for me. I am truly #blessed (and I’m not even being remotely ironic this time). I just want so badly to go back to being useful, a helpful, fixer of problems, solver of challenges, someone my people can count on. Not someone who my people need to worry about, cater to, work around.

It strikes me over and over again over this holiday break how my mother and I are oddly in the same boat though we are nearly 30 years apart in age. Neither of us can do what we want to do all of the time. Both of us move pretty slow because both of us are likely in some kind of pain. Both of us want to be able to do more and we’re both pissed off at the world about our current circumstances. My mother, a new widow learning to live on her own for the first time in almost 60 years and me, the 50 year old woman who woke up one morning feeling more like 75, has been consumed with anger every minute of every day since.

I want to have an answer when someone I love asks me, “What’s new?” My answer this year was probably better kept to myself but instead when my niece asked me that very question yesterday at Christmas brunch my answer came spewing out of it’s own accord, “Oh, you know. Not leaving my house a whole lot. Different body parts stop working every day. I haven’t showered in almost a week and I haven’t been around actual human people in weeks. I didn’t bother putting on makeup today because I knew I’d be too tired when I finally got home later to take it off. I look like a fatter, older, uglier version of who I used to be…so. I guess that’s what’s new.”

Geez. That was a lot. Nobody deserves that but there you have it. It’s very possible I should keep those kinds of responses to myself. They slip out. As if they demand to be heard and acknowledged. As if doing that might take their power away. Saying things out loud makes them not as scary, right? Not always, as it turns out.

Every year on Christmas morning before I head out to my family’s annual brunch, I watch A Christmas Carol alone at home in my jammies with a cup of coffee. I like the George C. Scott Scrooge the best. I cued up the movie on demand and enjoyed it again this year. It hit me about halfway through. I’ve been visited nightly by my ghosts of Christmases past, present and future and I want to be a changed woman much like Ebeneezer. Alas, I just keep being visited by the very same ghosts over and over and over again. Like they’re lost or caught in some kind of loop where everything bad is on repeat. And I keep waking up broken, slow, pained and angry.

My family went out of their way to make this first Christmas after my father’s death as good and happy as it could be. I am literally in awe of what my sister is capable of doing. She puts up like 5 Christmas trees! Thank goodness because I haven’t put one up in almost 14 years. My mom kicked butt too with her cooking, preparing, and generally doing more than any recently widowed woman should. My nephew Alex continues to be amazingly helpful and a source of actual joy. That kid is hilarious. Everyone was a joy to be around. I am so very lucky I am ashamed by how much I hate this entire experience. I want it to be over. It will never be over.

My mom had a tough time this holiday season. It broke my heart. It broke my heart even more to know that I am yet another thing she will continue to worry about. I am another reason why her mind can’t be at peace.

I had a wonderful Christmas. I really did and I am deeply grateful for all that I have and for the wonderful people I am surrounded by (including all of you, my readers). Yet, I am simultaneously also grieving. I’m grieving for my mother but I’m also grieving for myself. I’m grieving for what I lost, which feels like most of me, things I can never get back. I’m not sure what to do with that reality.

So, yeah. I’m a big holiday downer with a side of desperation. I have a trip to make for work in late January. I have literally no idea in the world how I’m going to make it happen. It’s lurking back there in my mind taunting me, telling me I can’t expect people to be patient with me forever. Hell, I’m not even patient with me! When am I going to finally wake up and laugh about this horrible dream I’ve been having?

When will I finally stop being so angry? 2018…you’re facing a lot of pressure. 2017 set the bar pretty damn low. Don’t let a girl down, 2018, ok? Don’t let a girl down.