I’ve always been very much a fly-by-the-seat-of-my-pants kind of girl. It wasn’t really a choice I made – it was just my nature. I had a boss once who said my facial expressions were louder than every voice in the room. I’ve been accused more than once, also in the workplace, of being overly emotional, prone to lash out usually on behalf of someone who I cared about or a member of my team – sometimes even on my own behalf. In every case, I was so full of righteous indignation it was nearly impossible for me to slow my roll. I have to admit, from where I’m sitting today in a place of having seen more years than I ever really even thought possible in the somewhat shallow business of advertising and advertising agencies, that I finally learned how to hold my tongue (and in some cases, my overly expressive face) and it kind of changed my life.

Sometimes the best response is no response at all. Sometimes the best thing to do is nothing. Sometimes the only appropriate action to take is to be still and listen and let time do her thing. The thing you thought might cause your head to physically explode might not look so volatile through the lens of a good night of sleep or even a good series of deep breaths. And yet I still forget this lesson over and over again.

I had a shitty day yesterday and I really wanted to write about how awful, pathetic and ridiculous my life has become. I really wanted to go super dark and tell you, my loyal readers, how I was fucking tired of this bullshit of writing every horrible thing and putting it out there on the interwebs and having nothing change. I would still be unable to walk far enough. I would still be unwilling to accept the smallness of this new life I’m living. I would still be pissed off all the time at pretty much everything. Writing about it wouldn’t help me and it probably wouldn’t help any of you either.

But I was wrong. I just needed to take a breather.

I had a visit with The Great Scott himself yesterday, my first viewing of his greatness since my first round of Lemtrada was complete in November of last year. The Great Scott (TGS) is my neurologist and MS specialist, and he is pretty much always a laugh a minute. He talks to me in a weird monotone. He kind of looks to the north of my forehead when we meet making me wonder what crazy thing he might be seeing up there (and quickly realizing it’s probably just my crazy hair that is distracting him). He knows I like to argue and get into the weeds about every little thing related to my disease, my treatment and my progression – which has moved much more quickly than either of us would have liked.

The reason I had to take a breather before writing about my visit with TGS in the Emerald City called Allegheny Neurology Associates, didn’t really have anything to do with anything the man himself said or did during our chat. He remains stymied by my somewhat dogged dedication to being one of his toughest cases. I think he might be close to retirement, maybe, and he probably wanted to go out with cases not quite as annoyingly complex as mine. He keeps throwing his best therapies at me and I keep batting them aside with reckless abandon, wondering if that’s the best he’s got. We thought Tysabri was going to be the one for me. It wasn’t. We thought Ocrevus had to be the answer to my prayers. It wasn’t. When we took out the really big guns and decided to hit my disease with the mack daddy of therapies, Lemtrada, we both had a little pit in our stomachs. I mean, I’m clearly projecting what TGS had in his big giant brain (and his stomach) when we signed that paperwork to get me in the program to receive Lemtrada because he never said any of these words to me. But I think we were both wondering what the hell we would do next if this one was a dud like all of the other miracles that came before it.

The Great Scott knew my early months post-Lemtrada Round One were rough. He knew I had been intermittently paralyzed, unable to function, needing lots and lots of help and barely functioning on my own. He knew I hadn’t been able to get to my office as much as I wanted to. He knew because I sent him some crazy panicked emails to tell him all the details and he responded once by hitting me with some high-dose steroids – but after those kind of didn’t do squat, we both decided that rest and patience were my best bet. The fact that I was sitting in his office with my rollator all by myself meant I was doing better! Even I had to admit, I was doing more things and getting a little bit stronger each day. The increments might be microscopic, the improvements so tiny that I didn’t even really accept them until I was in his office telling him about them.

“I think we have every reason to continue to be optimistic, Maribeth, I really do,” he said to me and his new physician partner who was joining us for our meeting. “Maribeth has been a bit of a challenge for us, Dr. So-and-So but we’re staying optimistic. I think we stay the course here. We hold off on any intermediary therapies for now. We wait and see where she goes. And I think she will get there, don’t you think so Maribeth? You’re going to get there.”

I had to admit, I hadn’t walked into his office feeling so very optimistic but he kind of had me inspired even when I was pretty determined not to be. We did the tests, we took a walk, we talked of my insane spasticity and options we haven’t explored yet like a baclofen pump (I hate this idea a lot) and considering Botox for my annoyingly curling toes on my right foot (I’m much more into this idea and hoping we can use some of the left overs on my forehead).

The fact that I was there in his office alone because I had managed to get to my appointment on my own was pretty much proof that I was doing better. But I started to get worried once we were finishing up and I remembered that I had to park kind of far away in the parking garage. Of course, every handicapped spot was taken in the place where I usually park that is a reasonable distance to TGS’s office. I had to go all the way to the top of the parking garage, take an elevator and walk quite some distance to get to the Allegheny Professional Building. I made it pretty easily because the trek was all downhill on my way to The Great Scott’s office. I checked my steps app on my phone and realized I had already gone 832 steps to get myself to this appointment. I didn’t think I had that many in me to get myself back to my car – especially because the walk would be uphill this time. There was one long ramp between me and the elevator that would get me to my car. My legs were kaput.

The Great Scott came to my rescue again!

He had one of the nurses call for “transport.” He explained that they would send someone with a wheel chair to push me back up that ramp and help me get back to my car in one piece. I sat in the waiting room feeling so relieved I could have cried while I waited for my wheels to arrive. I knew I’d have to hold Clara, my fancy Danish rollator, on my lap while someone pushed me but that was ok. She only weighs like 11 pounds. I was saved!

Until my transport arrived in the form of what looked to be a 65+ year old woman who might have weighed 100 pounds while soaking wet wearing a red shirt that said “valet volunteer.” My heart sank. Clara may weigh a mere 11 pounds but I weigh a lot more than that. My valet volunteer looked at me. She looked at Clara. We all looked skeptical that this was a good idea, but she kind of shrugged her shoulders and off we went. It was halfway up the ramp to the elevator when I realized how wrong this whole thing was going. She could barely push me. She wheeled me into at least two parked cars. I couldn’t see her since she was walking behind me of course, but I could hear her gasping and grunting. She didn’t sound good. She sounded so bad (and probably looked even worse) that at least two parking garage patrons asked her if she needed help. All of this is happening while I’m sitting my fat ass in that wheelchair, holding 11-pound Clara on my lap.

I have never been more humiliated in my life.

I was very close to tears but I held it together. I made her stop. I got up clumsily and stumbled the rest of the way up the ramp because I just really needed to get out of that parking garage and I really didn’t want to be standing there when this poor old woman keeled over and died right there on the ramp. I got myself to the elevator. I had to get up another small incline on the 7th floor to get to my car. I was holding back tears with all of my might but I was also just plain fucking pissed. I was pissed at the hospital for thinking a tiny 65-year-old volunteer was a reasonable option for transporting a fully adult woman uphill (a fully adult woman who is definitely not at my thinnest). I was pissed at myself for even letting her try. I was really pissed at myself for not using my head and getting a ride to the damn appointment in the first place! It was like it never even occurred to me that I might find myself in this situation. I was so sure I would be OK! I never even thought about asking for help until it was too late. I should have known it was a bad idea to drive myself but my inclination to just do things myself overrode all notions of common sense.

I was bawling and spitting fire by the time I slid into the front seat of my car. I was feeling so…useless. Stupid. Fat! So fat. Fat and embarrassed. If I wasn’t so useless I would have never been in this situation in the first place. If I hadn’t gained so much goddamn weight from years of steroids and inactivity, I would never have become a public spectacle and possible murderer of an old-lady volunteer. OK. I would never have gotten convicted of murder, it was completely a man slaughter situation based on my many, many years of watching Law & Order reruns but I would have had to humiliate myself again at my trial. I was just so angry. I was angry and sad and hopeless.

This might seem like a dramatic reaction to this situation. I know I tend toward the drama. I really do know. But it was horrible. I talked to my sister on my way home and told her about what happened and she could only say, “oh my god, Bethie, I’m so sorry. I would have driven you!” Which I totally knew she would! I would have had any number of helpers willing to drive me to my appointment but it never even occurred to me that I should have done that before I actually pulled into that parking spot on the 7th floor of the parking garage, ever so far away from TGS’S office. My sister also noted that nobody would even know about what happened unless I chose to “write about it for the whole internet to see.” And she was right about that, too. I didn’t want to tell anyone about it – anyone else that is. Too many people knew already thanks to my panic-posting about the incident on Facebook shortly after it all went down. I got myself home, dragged my sorry ass to my bed and angry cried myself to sleep. I didn’t write about my visit to the wizard. I just didn’t have it in me.

I realized, though, that I had to write about this for the whole internet to see, because I really wanted to write about my appointment with TGS and I couldn’t write about one thing and ignore the traumatic part. I also have to write about it because the perspective of one sleep helped me to see that this wasn’t my fault. It was humiliating, sure, but I’m sorry. There are worse things than being a little overweight right now like the fact that I haven’t been able to walk really well for the last four months, or the last three years for that matter, I’m in pain all of the time and I’m starting to respond to the voices in my head who are becoming my only friends.

In re-telling the story of my last few months to TGS during our appointment I had to see my story through his eyes instead of my own hyper-critical eyes. And in his eyes, I am showing improvement. No matter how tiny, I am showing improvement. I couldn’t get down the steps to my first floor by myself three months ago. I might not be able to walk very far, or very fast, but I am walking.

I am walking.

I have a consult with the Botox doctor on April 15. I see The Great Scott again in June because I think he likes me and didn’t want to wait another 6 months to see me again. He enjoys our verbal medical jargon sparring sessions as much as I do, nobody can tell me different. I made him laugh more than once during our short time together (total victory). He made me see that it might not feel like I’m getting any better but I am getting better. I just am. And I will. I had to write about that so that when I forget it again next week, next month or tomorrow I could remind myself of the good parts of my day yesterday in no uncertain terms.

This whole having a chronic illness thing is chock-full of humiliating experiences. That parking lot debacle yesterday is certainly not the first time I’ve been humiliated since my diagnosis and I’m pretty certain it won’t be the last. I just needed to take a breather and re-cast my day without the part where I blame myself for being so fat that I almost killed an old woman.

I just needed to take a breather.