But since I’m apparently in a marathon that I never signed up for here’s what I imagine that would be like.

When preparing for a marathon, you train for it over a long period of time, every run a little longer than the last. You plan every calorie, emphasize good nutrition, all with the goal of getting your body to perform at its singular best. Now I prepared for my Lemtrada week by doing all the things I knew would make my week easiest. I packed lunches. I downloaded audio books. I hydrated my ass off and I had all of my comfy clothes clean and ready to wear. I know people say that particular diets help their MS or help their symptoms. I’ve never really had that experience. I’ve tried some of the radical diet changes…I never felt better. I never felt like people describe they feel when they’re disciplined about every item of food they put in their mouths. I just feel like there’s another thing I have to worry about that isn’t making one bit of goddamn difference to how my body feels.

On race day, runners must have the buzz that comes with a big event that you’ve prepared for really hard. You feel anxious and excited. Those first ten miles basically fly by. The crowds are cheering you on. It’s exactly as awesome as you’ve always dreamed it would be. You can do anything! You are invincible. You are a gazelle. I would think this is the steroid portion of my Letrada marathon though it didn’t last as long as what I imagine running ten miles must feel like. My steroid high lasted for what felt like ten minutes even though it was more like just shy of two weeks.  It was like a high while it lasted when your body remembers what it felt like to be a normal.

Now’re we’re getting into the second third of the marathon. The marathon runner might be starting to slag a bit. Maybe shin splints start stinging or hamstring cramps make your legs shake. You begin to imagine the race will never end. This part of the course has more hills than you remembered. Your breath is short and fast. You try to find your light buoyant stride from the first ten miles but your legs feel every bit of the impact each time they strike the pavement hard. Your vision starts to blur from the sweat running into your eyes. Or maybe you find yourself shivering when the sun goes away and light rain starts to fall.

I think this is the portion of my Lemtrada marathon I’ve been in up til now. Everything, and I mean every thing, is hard. Steps fill me with dread. My house is full of steps. My body aches or it doesn’t ache but it feels stiff to the point of being solid, rusty steel. One minute I’m so hot I feel like I’m going to combust and the next minute I am shivering, sitting in my living room with my teeth chattering only to get the heat rush back again almost as soon as finally feel warm. The only time I feel comfortable is when I’m sleeping. Then when I wake up, I have the strange sensation of my legs not being attached to my body. I can’t move them. They aren’t listening to the commands coming from my brain or my bladder. The initial reaction is stone cold panic. Then you remember that you felt this same sensation yesterday and the day before that and the day before that and you calm yourself down long enough to will your legs to move over the side of the bed just in time to drunk walk to the bathroom.

Marathon runners in the home stretch might feel a mix of elation and exhaustion. The idea that you are near the end, that all of your training and preparation got you there. You are in terrible pain but you have the urge to keep going because even though you are possibly on your last legs, you think, no you believe you have the rest of the course in you. You envision yourself crossing the finish line. You want to see your friends and family at the end. You will feel fucking fantastic knowing the challenge you just faced. It was all worth it. You finished. You did the thing you weren’t sure you could do.

Let’s face it. I could be completely and totally off with this whole running analogy thing. I don’t know if you feel elated or depleted. I don’t know if you are full of endorphins that make you feel high or if you can barely crawl back to the car. I imagine depending on what kind of runner you are you could be feeling any or all of those things. That part of the marathon analogy totally fits this Lemtrada journey. Reading in support groups or closed Lemtrada Facebook groups you see a little bit of everything. Some people bounce  back right away. Some people have years of hell watching everything that can go wrong when taking Lemtrada actually go wrong in terrible ways. Some people say this drug made them forget they had MS at all. Some people rue the day they heard the word “Lemtrada.”

I had one good day last week that was oddly unexpected.

 I had a shitty week. There’s just no other way to put it. I was getting back into my work world after taking three weeks of “vacation” where I pretty much stayed out of the work world, something I’ve never done in my entire almost 30 year career in advertising. Turns out there’s a good reason why I’ve never done this before but we won’t get into that here. Let’s just say it was a shitty, not fun week and leave it at that. I cried. I cried a lot. I cried when my body wouldn’t respond. I cried from the pain. I cried from feeling left out and forgotten even though the rational parts of my broken brain knew that was probably ridiculous. I cried when I thought I didn’t have any tears left. I cried so much that it just started to feel normal by the end of the week. I had a hair appointment on Friday and I wasn’t sure if I would be able to make it there. I cried about that too.

Friday came (another vacation day but the first one in a while that I felt like I really needed), and my legs didn’t feel paralyzed when I woke up. I wasn’t the steroid-powered gazelle I was a couple of weeks ago but I wasn’t the crooked woman who lived in the crooked house who walked like she was 97. I was…just shy of OK which in this new life I have is as close to good as I usually expect to get so I kind of rolled with it. I got myself to the salon. The happiest place on earth.

I love hair day. I love the woman who does my hair. I love the people that work there. I consider them all friends. I love that they know what I’m going through and they make me feel totally accepted, cared for, loved. Anything I need I get. Anything I ask for is never too much. We laugh and tell salon stories and gossip. It’s as close to feeling like I used to feel before MS knocked me on my ass as I ever really get to feel. There is something magical about the salon.

As I drove up to the front door on a usually packed street in a trendy neighborhood just around lunch time, a car pulled out. I was almost in shock! I didn’t have to drive around to the back. I didn’t have to somehow get me and my rollator up the very steep steps that lead to the back door of the salon. It was like someone saved that parking spot for me, saw me coming and immediately signalled, “Here’s this prime parking spot for you BBAD! We got you.” I could have cried (again) in relief.

I decided not to bleach my hair like we usually do. Sometimes when I bleach when taking big bad drugs, bad things happen. Once, after I started Ocrevus, my normal bleaching extravaganza led to my hair flying around in the air like so much white snow because a whole damn lot of it was broken off. This has never happened to me in a life filled with extreme bleaching. My hair is made of Teflon or something. Dana, my hair genius, is always amazed at what we can do to my hair without bad things happening but not on that fateful day. We locked eyes in the mirror and I’m not sure which one of us was more horrified. We can laugh about it now but it was traumatic back then. After a week full of waterworks I knew I didn’t have a bleach-related baldness tragedy in me. We decided not to bleach.

“I think I want to go gray this time,” I said to Dana. “But not light gray. Like charcoal gray. Soot gray. Maybe we lighten it up in the front (because we can) but mostly let’s make it dark. Fix me up with a perfect fade because long hair around my neck and ears drives me insane, so that’s do something different.” Dana went back to the color bar with sparkles in her eyes and mixed up her potions. When she came back to my chair, I peeked inside the bowl and asked her what she used (I fancy myself an amateur colorist…much to Dana’s chagrin). She said, “Oh about 7 or 8 different things! A little gray, a little charcoal, a little ash, a little magic…” I couldn’t have been happier. God I love hair day!

My appointment went swimmingly. I didn’t feel terrible the entire time I was in the salon. I seemed to be walking a little better – not crazy good but not crazy bad either – and I loved my hair cut and the new color? The best. The best ever. Bethy Dark is in the building and she’s feeling pretty damn bad ass. Bad ass with a fancy Danish rollator, but bad ass none the less. And dudes, I hate when when people use the word bad ass because it’s usually in some meeting or other where the person using said term is anything but bad ass but goddamn if I didn’t feel it on Friday.

Because we didn’t have to bleach for hours on end, my appointment was over early enough for me to catch up with my best friend for lunch. We work together so my recent absence has been rough. I had so much to get caught up on. I had so much to tell her. I had to tell her how many times I cried even after I cried to her on the telephone not more than a few days ago. In the old days, we laughed until we cried and we did it often. These days I just cry because…well, because I can and goddamn if I don’t have some valid things to cry about these days that I’ve never had before. We went to our favorite pizza place (I already admitted that I’m not all on the special MS nutrition wagon…so shoot me). We talked and talked and it felt so good!

I made it home. I was super tired. That was more activity than I’ve had in weeks. I could feel exhaustion in my bones but it felt good not scary, it felt right. I got myself into my jammies, took a few selfies of my new hair and settled in for an evening with The Chilling Adventures of Sabrina on Netflix (so freaking good) and went to bed happy. Happy. I’m going to write that again because it almost feels foreign to me. I went to bed happy.

You might be thinking my switch has been flipped. I might have been thinking that too at the time until I woke up the next morning wonky and weak and stumbling as usual. Maybe not as bad as before but not as good as I felt the day before. But not as bad felt kind of good? I know. It confuses me too.

Today, my family came through to help me get the outside lights up for the holidays. I never put up a tree in the house because…well, cats? But I love having lights outside. I can see them through the windows and they make me feel festive. My brother and my mother came by. We decorated and chatted. I was super stumbly and weak but it was OK. There was always someone or something near by for me to hold on to or plop down into and now the lights are up and at least that feels good.

Tomorrow is my first home lab visit where the technician will come to the house to draw my blood and take my urine sample. We will see if my cell counts look OK. If my thyroid is going bonkers or if anything looks amiss with my kidneys. We will do this once a month for the next five years. Sweet Jesus. Five years is a really long time!

Maybe my switch is a dimmer switch, not the simple kind of switch with only options for off and on.

Maybe some days it’s gonna be kind of bright but other days it’s going to feel too dark to see where I’m going. Just knowing there will be some light, though, gives me hope. And any kind of hope is good hope in my book.