I’ve been pondering my supposed treatment refractory situation for what feels like every minute of every day since my last appointment with The Great Scott. I’m not going to lie, BBADdies, I have been struggling. TGS knocked the air out of me and then I piled on with my constant internal dialogue and things just got a little hairy.

I did what I usually do. I took stock. I made lists. I had a session with my Precious, Cheryl my therapist, who was more than a little freaked out after our last session. I had to do something. Living down there in the deep dark at the bottom of the well of my psyche is a hard thing for me to do for very long. It’s like I’m physically unable to stay there. The hopeful nugget somewhere deep in my heart starts to throb and won’t let me ignore it.

I mean, Cheryl and I have been here before in the place where things look hopeless, where life gets to feel like bit much, where the Universe seems intent on pushing me into a corner and forcing me to accept things that I flat out do not want to accept. When this has happened in the past my usual MO is to simply refuse to accept it. I find a way to believe I can change. Let’s face it, I believed I could change anything and most of the time I did.

This time she was hearing me say words foreign to her ears coming to her from my mouth. She heard me giving up. I was talking in terms that took what The Great Scott said to me and amplified it exponentially. I heard FINAL. She insisted there was also hope in those words and I kept refusing to accept that idea, insisting on the proven soundness of my pessimism as realism personal philosophy. She tried to make me see that I was not being realistic I was seeing things that weren’t so clear as crystal clear. We kept going around and around where she would say “That’s not realism! That’s pessimism!” and I would push back, “Sometimes when you’re in a shit situation realism IS pessimism and I refuse to pretend it’s not!” And around and around and around.

So we did a thing. We took inventory of my last few weeks – maybe even the last month and we listed out what I’ve been able to do, without embellishment. Just the facts, Jack. Just the facts.

Here’s the thing about Cheryl. Sometimes I think she’s my secret weapon. She seems so chill and laid back and we meander about in our sessions like we have no real destination but she always has a plan. It’s like a secret that she’s waiting for me to discover. She tosses me a crumb every now and then (“I’m trying to help you get the words right and your brain will follow.”) and she waits for me to slowly pick them up and squish those crumbs together and before you know it, I’ve made a delicious cookie. Then we laugh and marvel at what a great pair we are. We probably eat the cookie. We both have a persistent sweet tooth.

I remembered that there were many things I couldn’t do at all in the first months after Lemtrada Round 1 was in the bag.

I needed help every day. My nephew Alex was coming to my house twice a day every day to help me not perish. He did things for me like scooping litter in the basement and on the second floor. He brought me food and water or books or whatever I needed upstairs when I couldn’t safely manage the steps. He sometimes fed the creatures, too. My laundry became a team sport, my sister taking it one week, my mom taking it another week, a paid service taking it when there was too much for my sister or my mom to handle. I wasn’t showering a lot during those months. My steps app mocked me when I even had the nerve to open it and look. I was intermittently paralyzed. My legs were in near constant state of spasm.

Well, you probably know because I wrote all about it right here. It was scary and relentless and it felt like this time would never end.

Fast forward to the last month, month and a half. I’ve taken over kitty chores completely. I do twice daily feedings and twice daily scoopings each involving 12-15 actual steps to accomplish. There was a day or two here and there where I felt bad and needed help for the evening scoops but it was only a couple of times.

I’ve done laundry twice in the last month and a half. Granted, I amended my laundry routine to include folding while seated in front of the dryer which gave me rests in between stairs. I didn’t even attempt to carry the clean clothes upstairs – that would have been stupid but I did all the laundry AND I put the laundry away. Twice.

I made it to the office for a client meeting on my own. No driver. No handler. Just me. Was it hard? Hell yeh it was hard. Was I exhausted afterwards? I sure was. But I felt well enough not to need a driver, feeling confident enough that I’d be OK when I got home again to be able to manage evening chores and get myself safely to bed. I made it. It wasn’t easy but I did it.

Then I did it again a few days later. Wait, what? It was kind of a weird occurrence. I needed a place to do some calls where it would be quiet, near a bathroom and easy for me to maneuver around without overdoing it while my cleaning lady cleaned my house. It’s spring. The cat hair is winning. I needed to leave the house. My mom’s is my usual alternate office location but the street in front of her house was torn up for some public works project on the water lines. Her house wasn’t an option. It suddenly hit me that the best place for me to go was…the actual office. I mean…duh.

I wasn’t dressed for the office nor did I have any makeup on or any of that outside world life gear that we all think we need to function out there. But I had meetings and I needed no steps and a convenient bathroom! I WENT TO MY OFFICE. Nobody ran screaming from the building at the sight of me. I did my meetings. I made yet another (excellent) PowerPoint. I drove my friend Sandy home, formerly a daily ritual that I’ve come to truly value. I was exhausted but I did it. Two office days in two weeks back to back.

Then I remembered the day I took a shower AND went to lunch at a restaurant with my family. And another couple of times I left the house to go to restaurants for meals that just wouldn’t have been an option one-month post or even three months post. I’ve started to leave my house every couple of days even if it’s just to drive through Starbucks to grab a coffee. I would have never done that in January. I would have had to ask someone to do it for me, bring me a damn coffee. I didn’t even want to go outside because outside was just too hard. I wanted to go outside more so I did. Small, tiny trips. Sure! But I did that.

There was another time when I showered twice in one week. Twice!

Listen. I’m a pessimistic realist. Hope is not my strength. My way of thinking about any life situation is to imagine the worst-case scenario, determine how I would deal with that, then just keep going and let fate do her job. It’s in my very DNA. Maybe it’s the advertising executive in me! I mean I work in a business where you can literally do every single thing right in client relationship and YOU CAN STILL LOSE. Jesus. I’m pretty much living proof of that right now, aren’t I?  

I thought I’d accepted the futility of this thing we call life a long time ago. It’s just the way things go. The trick is to enjoy the crap out of it for as long as you can. That’s how I’ve lived my life. Cheryl knows it! She’s been with me through some dramatic shit. This is some dramatic shit!

But here’s what the facts are telling me. I am doing things, measurable things, that I couldn’t do before. I was getting excited on days when I’d somehow hit 800 steps. I’ve had at least three days each week in the last three where I hit 1,300 steps after doing 20 minutes on my Cubii. Why was I ignoring all of these things? Why was I not remembering them? Why did I go so very dark and so completely hopeless so quickly?

Here’s the straight up truth, people. I’ve never done anything this hard before.

Cheryl would pipe up about now and insist, “That’s bullshit. You do hard stuff all of the time.” And I would remind her that I did things that might seem hard but they were easy for me, therefore I was correct. It’s truly a wonder she’s never fired me in the last 18 years. This recovering from Lemtrada level of hard is like a whole new stratum of hard that I think I told myself I was ready for, but I had no clue whatsoever how crazy ridiculously difficult this whole thing would be. I just didn’t. It’s blown every assumption of hard I’ve ever had out of the damn water. The reason why is pretty simple.

Recovering from Lemtrada gave me a preview of what life would be like if I lost my independence and that shook me to the very core of my being. So many things in my life are careening out of control right in front of my face and it was all leading to the same place: Independence is impossible. I am a burden and I will always be a burden now. It’s just going to get worse. It is already getting worse.

Except for it’s not!

I realize the examples I’ve given in this post aren’t like mind-blowing paragons of persistence level tasks. I’m talking some pretty basic stuff. The pessimistic realist in me is forcing me to call myself out here and I can’t ignore her. I know these are teeny tiny little things that people do every day without even thinking. Except I don’t. I haven’t been able to do those things very well at all in the past 5 months. And I am improving. I just am.

I can’t keep avoiding hope my entire life. Hope haunts me like it’s just waiting to jump out from around the bend, scare the shit out of me and put me into instant cardiac arrest then lights out for Bethy Bright. Hope is hard. Especially when basic things aren’t basic anymore.

“You see it, right?” Cheryl asked me.

“I think I do,” I replied to her. “It freaks me out completely but I think I do.”

Then I told her that I was making her famous in the chronic illness blog reading community because she was pretty much hand-feeding me content that would be the crux of my next blog post because she clearly was spooning out some straight up voodoo magic Jedi mind trick level therapy. The next thing she said nearly made my little black heart grow three sizes that day.

My Precious, my Cheryl said, “Can I tell you what I want you to tell them about what makes me magic? I want you to tell them that there’s only one thing about me that makes the magic and that one thing is that I believe in you. I will never let you stop believing in you, because I believe in you. That’s all I want them to know.”

How lucky am I?

So, I’m not naïve enough to think that my pessimistic realist nature won’t get the best of me again. There’s a lot going on in my life right now, not any of it easy, even when I was super healthy none of it would have been easy. There’s just a lot of swirl in a lot of important places in my little corner of the world. But that’s happened many times before, too. Lemtrada recovery isn’t all of the sudden going to become a cake walk. But, I’m going to try and believe in me a little more. It’s the least I can do.

Treatment refractory case my ass, TGS. I’m moving forward.