I When I started this Lemtrada journey on Monday I had every intention of doing a daily blog describing the day-by-day experiences of the treatment. After my first day I struggled with that idea quite a bit.

The thing is, the first day was harrowing y’all. It wasn’t something I wanted to write about last night. I wasn’t sure I’d ever want to write about it at all if I’m completely honest. I was too consumed with grief and sadness and abject fucking terror that words other than those exact words were just not coming. I needed to sleep. Badly. So I did sleep and I hoped with all I was worth that I’d wake up and actually walk out my front door to do it all over again this morning. I wasn’t so sure I would be able to do it.

Yesterday started out really great. When getting Lemtrada there is much pre-medicating to make sure the drug itself doesn’t do you in. The best part of the pre-medication process for me was the one beautiful gram (that was ONE WHOLE GRAM in case you missed that) of Solumedrol which is like my dream drug. High dose steroids delivered intravenously are like magic to my body. The Great Scott and I have debated this reality over and over again in the past. He likes to use his dismissive low talking neurologist voice when he tells me how the research proves that IV steroids are no more effective than high dose oral Prednisone for nipping relapse in the bud. When I tell him that it might be so, but my body says the research does not reflect my actual experience of both, so sorry, TGS, I’m not backing down. Take that.

Anyway, 1 gram of IV Solumedrol makes me feel like wonder woman. The first time I got up to use the bathroom I walked like freaking ballerina. OK. I didn’t walk anything like a ballerina but that’s what I felt like when I swanned down the hall, all cocky like my rollator was just a complicated fashion accessory. I was loving it. I was loving it a lot. That weird stabbing pain I have in my left groin area every time I take a step? Gone. I’ve been limping around that pain for months. When it finally was gone, I wanted to walk and walk and walk. But I could only walk back to the infusion room because I had more infusion coming my way and the longer I was out there cruising around the longer it would be that I would be stuck in that room. That made me shuffle on back right quick because long days in that room are not exactly pleasant.

Monday we had a full house. Two Ocrevus, Three Tysabri and one Lemtrada (me obvi). The Tysabri folks are always the talkers. They come for infusion monthly and see their same monthly infusion friends so there’s a lot of constant chatter. I should know. I used to be one of them and the catching up with friends was what made those couple of hours bearable. I wasn’t one of them anymore this time. I was the interloper. The Ocrevus people get their infusions every six months. The dose of Benadryl they hit you with before the infusion makes you feel super sleepy so those folks are usually just plain asleep for a bunch of their 4-5 hours. When I was one of them, Marci and I would begin the day by chatting it up to catch up on life since last we’d seen each other exactly 28 days ago. We used to be monthly Tysabri buddies then became bi-annual Ocrevus buddies so we had great motivation to talk and catch up, but one or the other or both of us would inevitably fall fast asleep. Ocrevus infusions felt long compared to the Tysabri experience. It felt like torture at the time.

Dudes (if I may call you dudes who aren’t actually dudes, dudes). I had no idea from torture.

When the last of the Ocrevus folks had left, there was just me. For another 3 hours. By this time, I was starting to lose my mind. I’m trying to listen to audio books but it’s really hard for me. I lose track of the narrative. I’m distracted by the narrator’s voice and whether or not I like it. I’m distracted by the narrator trying to deliver different voices for different characters. The book I’m starting with is “Their Eyes Were Watching God,” by Zora Neale Hurston narrated by Ruby Dee. I thought I would love it because Ruby Dee has such an amazing voice. But I’m struggling. I miss seeing the words! I guess that’s a writer for you. When the words become just sounds I miss their physical form I guess. I’m going to listen to it to the end, for sure, but it’s hard to keep my mind from wandering and or falling asleep.

It was around 2PM yesterday when things started going downhill. It was a warm day in Pittsburgh yesterday. The thousand-year old building my infusion center is within struggles with climate control under the best of circumstances but this day it got really bad really fast. I had a fan blowing on me. I had ice cubes and ice water. But I was getting more and more overheated the longer I sat in that room which I was not allowed to leave.

When getting Lemtrada you are urged to drink tons of water because it helps with the elimination of all the dead cells in my system. It also means you pee a thousand times while you’re there. That 2PM stroll to the bathroom felt nothing like my ballerina prancing of earlier in the day. In fact, my legs were feeling like they didn’t want to move at all. I dragged both dead legs down the hall to the bathroom feeling panic rising in my throat. This was nothing like the foot drop, heavy legs experiences I’d had in the past. This was something entirely different. Neither leg would lift off of the floor at all. I got to the bathroom and sat there trying to catch my breath. I was trying to stop myself from panicking while hopped up on 1 entire GRAM of Solumedrol. Not likely. Not bloody likely, BBAD.

I made it back to the infusion room again eventually and tried to explain to the infusion nurses what was happening in a very calm, coherent manner in my mind but was actually starting to sound like the rantings of semi-paralyzed lunatic who was on the verge of absolutely freaking the fuck out. And freak the fuck out I did! I sobbed like I’ve not sobbed in a very long time  or maybe ever. It was just all so much! The dead legs. The heat. The overwhelming pressure I’m putting on myself for this treatment to be the IT drug that I desperately need it to be. The pressure of trying to be an optimist trapped in the body of a dedicated realist. Both nurses just sat at my knees and listened to me break down. They were amazing, as you would expect. I was out of control, which you probably might also expect, but not anywhere near what I expect of myself.

I had to be wheeled out to the parking lot in a wheel chair. Nurse B pushed my wheel chair, Nurse A pushed Clara my fancy Danish rollator with my backpack and my wrap on the seat. My ride was late due to a miscommunication and I had a while to sit there in the skywalk between the Allegheny Professional Building and the parking garage. It was warm outside but much cooler than it was in the infusion room. I could tell they didn’t want to leave me there alone but you know I insisted. I really needed some alone time. I was sitting there looking like a poor old homeless woman with an expensive Danish rollator and her Karl Lagerfeld backpack. When Nurse A said, “I’ll leave you here if you insist but I’ll feel better if you hold your backpack on your lap. It’s not outside the realm of possibility that some jerk might try to rob you.”

Wait, what?

Oh right! I’m vulnerable. Holy shit. I’ve never felt vulnerable like that in my life. Someone very well COULD rob me because I’d be 100% unable to stop it. The fact that I never even considered such a thing is the height of white privilege, isn’t it though? I felt safe because I’m strong and independent. But wait. I used to be those things. Now I’m helpless and vulnerable. This realization led to the one of my all-time favorite text exchanges with my best friend Sandy during which I shared with her my plan for a wildly successful second career as a television writer for my favorite show Law & Order SVU. Let’s just say it involves a crazed Evil Nurse Carol dressed in disguise as a young boy happening upon me in the skywalk wherein she is triggered by my Karl Lagerfeld backpack to remember flashbacks of terrible abuse she suffered at the hands of her evil Chanel-suit wearing step mother and flies into an overwhelming rage, wheels me to the parking lot ramp and kicks off the chair breaks where I then careen down the ramp into oncoming cars and am crushed like a bug (while Carol also makes off with my expensive Danish rollator that she plans to sell at a gross profit to a desperate MS patient on the mobility aid black market..this, by the way, will be her undoing as the SVU detectives have mad computer skills now and they track her down and arrest her evil ass).

I’d have to come up with a sex crime spin on this script, I realize, in order for me to sell it to SVU, but the mere suggestion of that gave me instant writer’s block.

Alex showed up with the car, finally, after about 45 minutes. The poor kid had to practically pick me up and put me in the car by that time. My legs felt paralyzed. I’ve only had that feeling in fleeting moments when I wake up in the morning and can’t feel my legs and I have a mini-freak out and then somehow get myself out of bed and move on.

This was an extended paralysis that didn’t feel like a fluke. It felt like I might never be able to move my legs again. Dramatic right? I have no other words to describe it. My legs were dead and didn’t come back to life until many hours later. My nephew had to get me out of the car again when we got home and up the stairs to my second floor which we managed with him walking behind me half pushing, half lifting me up each step. It was the worst feeling I’ve had yet since diagnosis and I have never been more afraid in my life.

My legs did come back, slowly, over the course of the night. And I had all the panic-induced thoughts you’d expect me to have. This treatment decision was a giant mistake. This disease is going to ruin me forever. My legs are dead and are never coming back. What am I going to do? WHAT AM I GOING TO DO OH MY GOD? Also, they had left my IV in my wrist overnight, all taped up so it wouldn’t get caught on anything and so that I wouldn’t have to  be stuck again the next day. Five veins for five days is a lot to ask of a patient. I hated the entire idea. I’d rather get stuck anew each day than sleep with a needle in my wrist. But I gave it a shot.

I wasn’t certain I’d return there again this morning. I was actually afraid to wake up for fear my legs wouldn’t be working again. I was sure I’d wake up in a pool of blood when my IV popped loose in the night mimicking that scene from The Godfather with the horse head in the producer’s bed. I went to sleep at 9:30PM last night and got out of bed at 6AM (while hopped up on steroids so that’s kind of miraculous in and of itself). I wanted to make sure I’d have time to go vote before infusion day began. As I was rudely pushed into consciousness by my alarm, I realized I could feel my feet. My feet have been numb for months so this felt like a very good sign. I woke up in a clean, blood-free bed. Good sign number 2. I attempted to swing my legs over the side of the bed and was shocked and delighted when they did so without much effort. Now don’t get me wrong. They weren’t like ballerina legs but they were operational. I take what I can get.

I rollated myself into the polling place with minimal help from my nephew. I voted. We got me to the infusion center only a few minutes late and we started the whole thing all over again. Like Ground Hog Day, the movie but a lot less appealing. The same harshly lit room, the same terribly uncomfortable blue vinyl recliners, the same homemade decorations hanging on the walls made out of construction paper and macrame (what happens in the infusion room stays in the infusion room, nurses are angels in training, people can brighten up a room – some by walking in and some by walking out), the plastic pillows with the paper pillow cases. The same fellow infusees, who weren’t at all the same but were, somehow exactly the damn same. I felt the wind in my sails dying, the terrible memories of yesterday and last night flooding my spotted brain.

Then I had a great morning. My gram of Solumedrol gave me the usual burst of energy. I walked easily to and from the bathroom, many many times. I kept telling myself not to get too happy too fast because I had felt great yesterday morning too. I could easily tank in just the same way I had before.

As I was eating my lunch of peanut butter and jelly sandwich and homemade Rice Krispie treats made for me by my angel of a mother, I looked up and saw the man himself. Yes. That man. The Great Scott made a rare visit to the infusion room just to see me!

Ok. He didn’t come to see me at all. He came to retrieve a patient who had an appointment mix up that TGS managed to squeeze in today so he dropped by to deliver the good news in person like a medical genius game show host. I was sitting right next to the open door he walked into, an attempt to not have heat stroke with cooler air from the hallway helping me stay cool along with my personal fan blowing on my face the whole day so he saw me first when he walked in. He gave me his little half-smile, but called out the name of the guy who’s dreams he was about to make come true and didn’t even say hello to me. I was crushed. Until he walked past me the second time to leave the room, flicked my sneaker that was hanging off the blue vinyl recliner, gave me a wink and said, “Remember, lots of water and lots of ibuprofen when you need it…you are going to do just fine.”

Now, I’m not saying the man is magical in any literal sense of the word, but goddamn if today didn’t stay good after that little foot flick. 2PM came along and all of the others were blissfully sent on their way. It was my alone time, the last two hours of the day where I needed to be observed before I was let free. It was about that time yesterday when everything went to shit and I was suddenly legit paraplegic for a few hours, so I felt some dread sneaking into my heart expecting the crash to happen again.

The crash never came.

I walked easily to and from the bathroom. I walked all by myself to the parking garage and didn’t wish to die even one time! I got myself out of the car and up the steps when I got home pretty easily. It was OK.

It was OK.

I feel OK.

The big lesson of this ponderously long post, for those diehards who have stuck around this long, is that I should know better by now. The bright comes with the dark. When it’s so bright you feel you can catch a glimpse of the you  you once were, that is an illusion. When it’s so dark you can see yourself being ruined forever by some freak and sudden new physical calamity, that is also an illusion. This disease is so fucking hard because nothing lasts! Not the good. Not the dire. You can never get used to anything because it never lasts long enough before it changes back again – sometimes violently and sometimes delightfully, sometimes so slow you might miss it, sometimes so fast it leaves your head spinning. It’s the conundrum of life wrapped up in a maddeningly frustrating auto-immune disorder that has no rhyme or reason.

In other words, it’s a lot like life. Full of bright, full of dark, full of a lot more gray. This disease is like being beat up by the freaking Buddha! Accept your non-control or perish. Be like the water or drown. One day at a time, or even one moment at a time that’s how it goes (neither the Buddha nor the Tao said that, it was probably some awesome MS doctor).

This treatment might not be a miracle. I mean, I am not expecting a miracle at all. I know that’s not even remotely realistic. It might get a whole lot worse before it gets even a little bit better. It might not get better at all! But it probably won’t stop constantly changing just to prove to me that change is the only thing one can count on in this life.

I’ll go back to the infusion room tomorrow  coming off of the high of today but that won’t guarantee a high for tomorrow. Just like the low of Monday didn’t guarantee another low for today. Getting comfortable with ambiguity is what this MS game is all about as it turns out.

This steroid-induced very bright and dark blog post is way too long. But if you’ve stuck with me through this whole thing so far, I was betting you might be willing to do it again. The real diehards among you with lots of time on your hands (as if) might get to the end. But it’s for me that I had to write this down in actual words I can see to remind myself of the basic Tao of MS. Somehow I keep forgetting this most basic of lessons.

The bright and the dark are mutable things. This is the thing we can all count on. I’m gonna try to remind myself of that tomorrow. And next week. And next year when I face down Round 2 Day 1. And who knows what comes after that, what crazy miracles might be coming down the health care research pike…

It was all always going to change even without MS! The day I get comfortable with that basic truth might be the day I finally can accept this disease and roll with it. I will look forward to that day when it finally comes. Until then…more blue vinyl chairs and needle sticks (they sent me home tonight without an IV thank the baby Jesus) and new infusion patients coming in and out of my life. That’s gotta be OK. And it’s a lot more OK when your mom packs your lunch with delicious home-made marshmallow Rice Krispie treats, right?

Right.