Here’s the thing about putting all your business on the Internet (as my mother calls what I do)…it means when bad things happen you feel compelled to share the news even when you’re not quite ready to talk about the news. This is one of those times.

I’ve agonized over this and I’m still agonizing over it this morning but someone said something to me yesterday that kind of hit me hard and that was something to the effect of, “You feel ashamed and embarrassed by all of this but you don’t realize how much what you do helps so many people. Write about it when you’re ready. It’s important.” I don’t know about all of that “important” business really. But I do feel like this sharing is a part of taking the first step toward a new way of thinking, a critical part of healing myself and I’m not talking about healing myself of MS. We all know how that particular bitch rolls.

So about that trip to Cleveland yesterday.

I didn’t get great news. I’m a bit stymied over why I had to drive to another city to receive news that I’m guessing is going to be no big shock to most of you who know even a little bit about MS and how that bitch rolls and what my personal experience has been with my disease. I think I had figured this out for myself before I even saw The Great Scott the first time. I’ve got Cheryl, my therapist, to back me up because I’m quite sure before I was officially diagnosed by an actual doctor, I had diagnosed myself with the assistance of Dr. Google. I thought I was being dramatic when I announced to Cheryl back then how it was obvious to me that I either had ALS or MS, “…if it’s MS I’m pretty sure it’s the bad kind. I mean it all adds up.”

We can dissect together the hilarious ignorance of me acting like there was any kind of MS that was good at another time.

Dr. Mary Willis and her team were awesome. I could tell she was my kind of girl when she very quickly looked me in the face, after reading my meticulously prepared timeline of the last three years of my life since diagnosis and asking me a few pointed questions and said, “You have progressive MS.”

We talked at length and she helped me understand how my spinal cord looks pretty much like the fancy Swiss cheese with the very many little tiny holes? I forget what that particular cheese is called but it’s exactly what my spinal cord looks like. We looked at “slices” of my spinal cord from cervical to thoracic to lumbar and the Swiss cheese effect is clearly undeniable and extensive.

“With this kind of damage, it’s rather remarkable that you were diagnosed so late in life, that you’d never had symptoms earlier that would indicate this path,” she said. My Swiss cheese spinal cord explains why my symptoms are so centrally located in my lower body. “There is no fixing this kind of damage, at least not today,” she said. “The path you’re on with your physiatrist and your neurology team’s plan is the right one. We need to keep you moving and figure out how to get you stronger in the face of this reality. You’re still walking. We want to keep you walking for as long as possible. And your team will help you work through the additional mobility aids you may decide you need to get you back into your life. It’s not an either or. Either a chair or walking. It’s both and they will help you figure that out.”

There was really good news in this conversation that I’ve tended to gloss over in my mind in the less than 24 hours since I received all of this information and the big story there is my big beautiful brain.

My brain, Dr. Willis explained, is kind of a thing of beauty. There is no atrophy. My brain looks young (I remember TGS telling me this once too). I have only two tiny lesions on my brain in areas that are less critical to important functions. I basically have a clean brain for lack of a better way to put it. In order to keep it that way, she wants me to finish Round 2 of Lemtrada later this year.

After that, this game plan changes. I will shift toward working with the Magical Swan (the unicorn who is my new physiatrist) on things like strengthening my body in slow, gentle ways; managing and optimizing my medication approach (the Botox is going to help get me off of the muscle relaxers which will help lots of things). And of course, adding some mobility aids to my arsenal of expensive gadgets to help me get back to living my life.

Writing it out like that makes it all sound so neat and tidy. It doesn’t feel like either of those things. This feels like a long, scary, dark and twisty road right now. I’m sure it won’t feel that way forever. It definitely feels that way now.

I haven’t spent much time learning about Progressive MS primarily because it’s hard to be in denial and research mode at the same time. I know this isn’t a death sentence. It feels like the end of something, though, and maybe it’s the end of fighting this truth so blindly. Maybe it’s the end of my old life or maybe it’s the beginning of a new life. Maybe it’s some combination of the two? I can’t quite get to sunshine and unicorns in my mind just yet but I’m sure there will be some peace that eventually breaks through the brick wall of my utter anguish. I know I won’t always feel this way.

In the “obnoxiously unable to give up” column, there’s the undeniable persistence of hope somewhere way down deep in the dark where Bethy Dark lives. Maybe that hope comes from the simple truth that for this phase of my MS, I am 100% in charge. There’s no more waiting for someone to save me. There are no more aggressive therapies to try (at least for now). I may even have had my last dose of high dose Prednisone! Now there’s a metallic glittery silver lining.

There’s just me left with a big problem to solve. And I’ve chosen some really brilliant partners to help me solve it when my own big beautiful brain comes up against a brick wall. And I have the most amazing family in the world. And awesome friends. And all of you! You guys just get it and I cannot describe how important that is.

I’ve solved really difficult problems for thirty years in my career for a lot less lofty reasons. This is about saving my own life. This is about deciding how I want to live and creating that reality. I am shook and terrified by the enormity of this particular challenge. I’m just me! What if I can’t do it?

But what if I can?

I’m probably going to cry a lot for the next several days while I try to absorb all of this. I’m actually going to give myself as much time as I need to do that. But while I’m doing that I will also try not to lose sight of the fact that I’ve been solving big hairy ugly problems for a very long time for a very many clients. This is just another client! So what if she’s me. I’ve dealt with worse. I can assure you of that.