Here’s the unfiltered truth about why writing this blog has been helpful to me. It’s not about helping others. Or even helping myself, really. It was mostly about the fact that I could do it without a great deal of effort. For some reason, one I am forever grateful for but will never entirely understand, writing is easy for me. It’s the one thing I know how to do without even trying.

Yes. I’ve been taught, coached, edited and guided through many years of schooling with professors who tried to make me better at this craft of mine with vicious swipes of their old-school red pens but mostly I’ve always had this ability to write. It’s probably like how some people are virtuoso pianists without ever having played a piano. Wait, did I just compare my writing to a virtuoso pianist? Wow. Hello, Beth? It’s reality. You’re drunk. Or you might as well be drunk because you walk like a wicked sailor on a bender and you probably smell like one too and you clearly suffer from delusions of grandeur.

But this is the problem I’m having since my appointment last week with The Great Scott (TGS to my friends). I just don’t want to write about this because this kind of writing is not fun. It’s hard. I’ve been struggling with this post for days now.

I am awash in words, observations, feelings whoa whoa whoa feelings but I honestly don’t want to share any of them. They are not nice things for a person like me to feel and sharing them won’t make anyone better for it, least of all me. I really don’t want to look like THAT girl. The one who is so fortunate it’s ridiculous but is so consumed by waves of self-pity that she is stuck motionless in time like that mosquito preserved for all time in amber from Jurassic Park. The very mosquito that supplied the DNA for the eventually murderous dinosaurs. If I set my feelings loose in the world I will be proven to be the chronic illness having fraud I currently feel like. I will kill the dream of many readers who might have come here to be inspired much like those dinosaurs killed all of those random people in Jurassic Park who were just looking to have some fun.

See? I just proved myself wrong. I know I’m not that good of a writer. I’ve definitely used that movie analogy before, right here on this blog, so now I’ve also officially outed myself as the pathetic non-virtuoso writer that I am quickly devolving into.

If I push “publish” on this post I will prove myself to be just another sick person writing about how much it sucks to be so goddamn sick for so long. I mean, holy crap. It’s not even been that long for me! Some of you have been living with this kind of thing for a helluva lot longer than I have. You’ve had it a helluva lot worse than I have it. I’m practically swimming in the ways my chronic illness isn’t half as bad as a lot of people out there have it. But I know if I don’t write about this here, in this place and with you people, it might threaten to drive me actually crazy.

Because, straight talk coming people, I am in a deep dark place right now. Most of you probably already know why because I posted about it on my Facebook page but for the rest of you, I will explain more here. At my last appointment, TGS introduced me to the notion of something called the treatment refractory case of multiple sclerosis. The MS that some people have that defies traditional categories. Or maybe it’s quite simply a way of talking about primary progressive MS that sounds nicer and more scientific than those words do? Whatever the case, when I Googled the term as it’s related to having multiple sclerosis I got pretty much nothing but highly incomprehensible scientific papers that I could barely get through. So, I went a bit simpler. What does “refractory” actually mean?

Now we’re getting somewhere! If only that last example would have said “a human-shaped group of molecules that is resistant to healing.” That would be better but this definition works fairly well even without the edit. Also, I’d much rather have a refractory pony than a refractory chronic disease. Whoever wrote this definition clearly didn’t have my case in mind.

But this definition very neatly sums up my experience with multiple sclerosis since getting my official diagnosis on December 1, 2015 at the ripe old age of 48.

None of the most effective available MS treatments worked for me. I spent 15 months receiving monthly infusions of Tysabri while continuing to decline. I spent another 24 months on supposed-wonder drug Ocrevus and continued to decline. I’ve had countless rounds of high-dose steroids in between both of those treatments, both IV and oral, that would appear to help me for a day or so but would quickly devolve into me being worse than I was before. What really should have tipped me off sooner that my MS was going to be the super asshole of generally asshole diseases is that through all of this, even during hospitalizations for supposed relapses, my MRIs have always been stable.

TGS and I had never had a discussion about the issue of my mysteriously stable MRIs in our previous visits. I am guessing that he might have done this on purpose. If he categorized me as PPMS or whatever this treatment refractory version of MS starts to be called I am quite sure it would mean more work for both of us. Insurance options would get dicey. None of this is easy to deal with or accept for either of us. I know it. He knows it. I also think we may have talked about this issue but not in a way that was as direct as I needed it to be. The thing is, we had apparently discussed it during my most recent appointment but I had no recollection of it.

I emailed The Great Scott after our appointment to follow up because I had so many unanswered questions most of which revolved around what I can be doing to improve my diminishing quality of life in the meantime while we wait for me to get stronger. Or something. I mean, I’m not even sure what I’m waiting on happening anymore. I keep reminding myself that this is the marathon and not the sprint people keep telling me I’m running. Then I forget why I’m even running in the first place. Where is the place I’m running to again?

It wasn’t until I got the email from TGS, when I saw the words in black and white on the screen that I really started to feel the weight of what this means to me. For those who may have missed it, TGS had ordered a MRI of my thoracic spine to determine if there was any evidence of MS activity there. I wanted to know how he knew I wasn’t actually progressing, how would we know if Lemtrada did the job, if we weren’t also looking for new or active lesions on my brain. This was his reply:

Unfortunately, he was not telling me his secretary Lisa was sending an authorization for a new and more functional brain, as many of my Facebook followers thought. He was merely adding a brain scan to the previously ordered MRI of my T-spine. Lisa is a great help because she helps me avoid Evil Nurse Carol but Lisa is not a frigging miracle worker, is she? She also clearly doesn’t proof TGS’s email because I have no idea what “reagrds” are and I’m not even sure I want any of them let alone the best of reagrds. The best part of this email is how I didn’t really even grasp what it meant until I’d read it like ten more times. It took ten more times for me to really get what was really happening here. This was what the death of trying feels like. This was how it must feel to finally realize how big, how life altering and huge this change I’ve been going through over the past three years really is.

I try to minimize it. I try to pretend I can figure this out just like I always figure things out in my life: I just try harder. I go at it like a woman possessed. If you won’t make the change I want to see in my life, well then by god, I would make it happen and you could watch me do it and weep. I never take no for an answer. If you’re in my life, personally or professionally, you’ve probably wondered if I knew what the word “can’t” actually meant. Because I’ve always believed that I can. I can do anything. If you tell me I can’t, I will take great glee in watching me shove your stupid opinion down your stupid throat. There is nothing I cannot do.

Until there actually is. This kind of obstinate clueless is something I used to be proud of! Imagine such a thing.

Once it hit me that this thing, this awful fucking disease was truly something I couldn’t beat, master or pummel into submission I found myself just staring at my computer screen with fingers that weren’t able to translate the feelings and thoughts I was having into insightful words on a page for the first time in my life. I cannot beat this. I just can’t. It’s refractory for the love of all that is holy! I am refractory. THIS is approach to my so-called chronic disease-having life is refractory.

Then I cried a lot.

I struggled to find meaning in this life I’m so desperately trying to hold on to with both hands. I struggled to find focus in meaningless stuff like my actual job. I frankly struggled to get out of bed this morning. I woke up this morning and cried before rubbing the sleep out of my eyes. I cried twice today either in front of actual humans or on the telephone with others, neither of whom signed up for watching me cry or even listening to me cry over a wireless network.

After all of that happened I started to realize a few things about the email from The Great Scott. What his email doesn’t say is that I DO have this kind of MS. It says that I might have it. I might be one of those people who just keeps having disease activity in the absence of what most would refer to as relapses but don’t seem to be actual relapses at all based on MRI activity. I might be a person with MS that is obstinate, stubborn, mulish, bull-headed, pigheaded, or obdurate, headstrong, wayward or perverse (from the official definition of “refractory” I so easily found online thanks to Google).

I might have a version of MS that is highly unmanageable and seemingly completely random making it almost impossible to figure out how to navigate life, work, family and relationships. I might have a version of MS that never gets better but only keeps getting worse. But it also occurred to me that you might have that kind of MS too. Maybe it hasn’t been named as such for you but every kind of MS has to feel that way regardless of how it impacts your life today. My version might feel overtly aggressive and relentless to me but your version probably feels that way too.

Listen. I’m not going to lie to anyone, especially not here. I can’t really see a path for myself that is at all appealing to me right now. This feels like an ending to me. The end of hope that I would ever be able to say that my MS doesn’t control my life. The end of the hope that I could somehow maintain anything of what my former life gave me. I’m not sure I can do that. I know that for now, I have to keep trying. I have to keep trying every single day to be a part of the world in which I live.

In the meantime, I’m going to explore some options that might help me do that a bit more effectively. I have a new doctor to meet who is going to help me figure out how to manage my mobility challenges in the short term. I don’t know what this is going to entail. But I will explore it because my mental health depends on it. I am also having a hard time with spasticity in my feet – specifically the toes on my right foot. I have an appointment with another new doctor to talk about if Botox® can help me with that. It’s not really the kind of Botox® appointment I thought I’d be having at this stage of my life, but hey. I’m trying to keep an open mind.

I’m not sure what all of this will mean when it’s time to decide about Round 2 of Lemtrada. I’m probably going to want to see it through. But I guess I also have to consider not going through with it. I’ll work with TGS (and his best reagrds) when that time comes because I still feel like I’m in the right hands. I am seeing him again in June, don’t forget, and I’m going to put it to him this way: Are you giving up on me TGS?

That might seem like a crazy thing to ask your MS specialist (with the very big brain, if terrible email communication skills) but I need to know that he’s not giving up on me. I don’t want to give up on me and I need to know that I’m not in this alone.

I keep going back to this one part of the email that one of my Facebook followers wisely drew my attention to:

“Even so, you may stabilize at any time for equally unclear reasons.”

In some ways, this is kind of a definition for life, isn’t it? Life throws some ridiculous shit our way every single day, chronic illness or no, and we can only try to be there and open to it (and the consequences both good and bad) when they actually happen. I guess I’m going to try and remember that.