I’ve been having a tough time these last few weeks, as most of you already know. I’ve experienced a worsening of my major symptoms (walking, weakness, balance, spasticity and pain) and a new one for me, numbness in my hands. The numbness is intermittent, usually at night but sometimes at seemingly random times. It got me to worrying that maybe I was experiencing a relapse-like event or some kind of medication mess up. So, I do what I normally do when things like this happen and it lasts more than 24 hours, I hit up the man, the myth, the legend, my MS specialist The Great Scott (TGS to his friends…or more like to my friends).

I told him I’d like to talk to him on the phone if I could, because these issues were complicated and I wanted to pick his brain. Imagine my shock and awe when he called me the very next morning. When I think back on this conversation that happened only a few days ago, I have a hard time remembering it. Usually I remember our chats verbatim and I’ve taken great joy in sharing them in these very posts but this one? This one is rather fuzzy. Let’s just say I remember the gist of it and the gist of it was this:

“Well Maribeth, I’m sorry you’re feeling so poorly. I don’t think we have many options here. We’ve found in the past that your MS seems to resist anti-inflammatory measures that normally work. I’ve thrown all of my biggest treatment guns at you. I’m not seeing any path forward here to address these issues. I think your best bet is to focus on physical therapy and work with Dr. Swan to get that stepped up. We are out of medical options at this point.”

Wait. What?

I heard the sound of a needle scratching violently across an old school record album in my head. I think TGS just said he is giving up on me. But not according to him.

“I’m not giving up on you, Maribeth, I just don’t have any options right now beyond what we’ve already tried. You have round 2 of Lemtrada coming up. We will see how you do after that, but I fear we may be dealing with some rare form of MS that isn’t controlled by modulating the immune response. I told you in one of our last visits about something called myelocortical MS and I think that’s what we may be dealing with here. Did you have time to look into that?”

Well, of course I had time.

I googled that shit the minute I left his office and immediately tried to forget that I had. See, this isn’t a great thing to have. Not only is it pretty fucking new, it’s so new that there are two articles about the “new” sub-class of MS that are referenced in every search result that comes up. Here’s the gist of it…myelocorticortical MS is “characterized by demyelination only in the spinal cord and cerebral cortex and not in the cerebral white matter.” You can read all about it here if you’re so inclined. I’ve read it over a hundred times and it still doesn’t make sense to me. The thing that really doesn’t make sense to me is the part where one article said, “However, the individuals with myelocortical MS had a significantly smaller area of spinal cord demyelination (median 3.81% vs 13.81%).” Because as we learned after my trek to The Cleveland Clinic, my spinal cord is riddled with lesions from top to bottom. Like fancy Swiss cheese, I believe I called it at the time. The analogy is fitting if I don’t say so myself.

Here’s the thing. I don’t want to give up treating new symptoms yet. I don’t think we should assume I have this fancy new kind of treatment-averse MS until we are certain that’s what it is and I’m not sure there is any way for us to be certain. I sent TGS an email a few minutes ago saying pretty much those exact words. I asked him if we should consider treatment of this exacerbation with steroids and if we do, can they be of the IV Solumedrol variety and not oral Prednisone. We have argued this point over and over again where TGS insists that the research proves they work identically in the body, but my personal experience has shown otherwise. I react very badly to high-dose oral steroids but react quite well to IV Solumedrol. I don’t really much care what the research says.

I can’t even believe I’m asking for steroids! I vowed never ever again!

Do I sound desperate to you? I should because I am most definitely feeling desperate. Call it the outcome of a perfect weather day where my legs were so weak I couldn’t make it to my car to drop the top and zoom away the cobwebs in my fairly pristine brain. I could barely make it to the front porch because the 6” step up to get back into my house was too much for me today. I dragged myself up and down the steps to the upstairs bathroom today a few times in the name of exercise (if a word haunts me more than the word “atrophy” I can assure you that I do not know that word). Also, I’m tired of cleaning up after myself in the downstairs loo! There. I said it. Fuck peeing in a damn bucket. I’m OVER IT.

But you know I can’t be over it.

I can never be over it. This is it. This is my reality now and I need to come to terms with that reality but does that have to involve giving up hope? I don’t think I can do it! I’ve tried! Ask Cheryl, my precious therapist, who has heard me sob down the phone line in appointment after appointment for the last few months over the fact that I indeed had no hope left in me when the reality is that I can’t STOP hoping for a goddamn miracle because I am desperate for TGS to be dead wrong. I am plagued by an aggressive disease, but I am just as riddled with the disease called hope because I appear to be unable to get my head around a future of constantly declining health and new and better forms of disability. A future where we have exhausted all medical means of intervention available to me.

I can hear you. I can hear you through the interwebs shaking your head and tsk’ing over how sad it is that poor BethyBright can’t accept her fate and get the fuck ON with it already. I know. I feel it too. In my old life, I used to believe I could change anything, absolutely everything, if I tried hard enough. I had this insane perception that there was literally nothing I couldn’t make happen if I put the full force of my incredible mind toward that thing. I would find a way! I always found a way but this time, there is no way. Even though he said the words, “I’m not giving up on you Maribeth” in my brain that’s exactly what he’s doing. I want him to want to help me MORE. I want him to try to perform a miracle not wash his hands of me while I exhaust myself trudging to more physical therapy and trying more hair-brained ideas for “wellness” that are so ubiquitous on the world wide web everywhere you look.

I’m eating well. I’ve lost the weight. I stretch like it’s my job. I do the exercises and I take the damn stairs as often as I can physically manage them. I take the supplements. I’ve tried thc and cbd and lmnop. I don’t try to take on too much and I’ve accepted that my body is limited and it can only do so much. I’ve all but eliminated the word “and” from my life. I’ve embraced the “or” with both arms and I hug it tight. I’ve given up the fancy shoes, the fancy clothes, the elaborate makeup and the whole external appearance of having my shit even partially together.

I’ve done all of this and I still can’t accept that this is it. That this is what I now have to accept as my new normal. A new normal where even that level of normal changes from week-to-week, day-to-day – sometimes hour-by-hour.

I know what you’re thinking. You’re thinking that I should stop bitching and start looking into the mirror of reality, Ms. Doña Quixote. Those knights you’ve been wildly fighting? They’ve been windmills all along. Give up the ghost! Sit your ass down, pee in that bucket and get on with it! You’re getting on our nerves already with all of this repetitive denial BS.

And, I know you’re right. I know I shouldn’t be over here thinking of traveling to NYC for a third opinion. I might be thinking about doing that only because it’s the one place TGS told me I couldn’t go for my second opinion. “You can do Cleveland Clinic, Hopkins would be good – maybe Northwestern but do not go to Tische. Tische and their junk science is not an option here.”

Well then.

You know I’m going to be OK. If this is what it is – if this is as good as it gets and I need to get down to the business of acceptance, giving up and maximizing the quality of life I have left, you know I will do that. What choice do I have, really? I will eat well and physical therapy the shit out of this disease. But I still can’t give up hope that there’s some better answer out there for me. I guess the bottom line is that I have to do both. Live like this really is it and take the power of my own health in my hands and work that program until I can no longer work it.

But I can’t give up on my impossible dream. I won’t.