I remember when I first started sharing this blog publicly, one of my very first commenters told me that the first three to five years after a diagnosis of MS were a nightmare.

In fact, I remember more than one of you fine people sharing diagnosis stories wherein it took about that long before you felt like you found your MS-legs, as it were, a different kind of sea legs that nobody wants. I listened to you telling me these things and I thought to myself, “Um, if this takes that long I’m not gonna be very happy.” Three to five years of this? It might as well be three to five thousand years.

And here I am, just over the two and a half year mark post-diagnosis and I feel like it’s been two and a half thousand years. That’s me up there. Sailing around on my magic carpet under water where I can see the sunlight coming in but it’s nowhere near me just yet. I can see it. I know it’s there. But I can’t feel it and it’s starting to really bother me. Yeh, my magic carpet is water retardant and it works under water. Just roll with me here, people. Analogies are hard when your brain is broken.

I’ve gone through the stages. I’ve given up the cool shoes. And all sense of vanity and passion for personal grooming and fashion in general. I’ve adjusted my social expectations and my expectations for most things, really. I’ve gotten the mobility aids. I’ve climbed the giant steps to the business meetings in the glass conference rooms and ridden the freight elevator. I’ve hidden from the sun and heat and gotten very familiar with the interior of my home as well as the interior of my psyche and learned that both kind of get on my nerves sometimes. I’ve hidden from the cold and ice, too, which means I’ve probably spent more than 2/3 of the last two and a half years hiding from something. Or everything.

I’ve been to 22 physical therapy appointments and seen some major improvements that suddenly disappeared after skipping two sessions in a row because real life got in the way. I walked 627 feet in 6 minutes yesterday and felt like I would die on the spot in the  hallway at the rehabilitation hospital. My goal is 1000 feet without collapsing. It’s important to have goals. I only have 8 PT sessions left though and 1000 feet might as well be a thousand miles. It’s also bad form to collapse on your stroll around the rehabilitation hospital when the guy with two prosthetic legs is inching around a few steps behind you, smile on his face, telling you to keep on going, you’re almost there.

I guess what I’m trying to say here is that I’m not even to the three-year mark yet and I am generally living down here, under the sea, floating around wondering if I’ll ever see the dry land ever again or be able to stop dreading what I’ll find up there where the able people wander around like working legs are a thing you should be able to count on.

I poke my head out every now and again, usually for a chance to use my brain and pull out the old-Beth advertising executive moves and flex them a bit.

Sometimes I think it’s wrong that I spend so much of my ever-decreasing energy stores to perform in a job that would definitely go on without me probably without missing a single beat. It would probably be only a few weeks before people at the office starting asking, “Beth Who?” but the reality is it’s one of the few things that can make me feel normal again even when I’m lifting my legs with my arms surrounded by people in business clothes who rally around me to tackle the insanely complex task of getting my brain, and the useless encasement for it that I call my body, from point A to point B. It still makes me feel normal even in the most abnormal of circumstances. So I will cling to this insane work life with my last strength because that is important to me. Still.

People scoff at people who define themselves by what they do for a living. I get that, sometimes, but I also wonder if any of those people ever got a true chance to create something awesome, not just for themselves but for other people too. When I do good things it’s good for me, sure, but it’s also good for other people who I care about. I can give more people jobs that they hopefully love, too. I can create that for some lucky people, I really can, I just have to work hard and remain focused and use my oddly natural skill for making shit happen in the world of advertising. It’s not just about the money (or the health insurance) although I cannot discount the critical nature of both in this new life where my staff increases by the day for doing basic home & personal maintenance. It’s about a purpose. For myself and for other people.  I’m not giving that shit up until it’s pried from my someday potentially useless arms.

The reason all of this is on my mind is that my last couple of weeks have taken their toll.

Like all things MS-related, the reasons for this downturn are rather ambiguous. There’s the two PT sessions in a row I had to cancel because I couldn’t disappear from my real life for the two and a half hours required to get me there and back in any kind of usable form. Then there’s the countless hours thinking. Pondering. Preparing. Getting ready for the next big thing coming down the pike at work. Then there are the colossal marathons that are work meetings…preparing to get myself there, back and functional in the in between times is no easy task. Not for me and not for those around me. There’s the fucking weather! God bless America, this summer has sucked. It’s been so hot and humid and horrid!

Then there’s the final factor that remains unclear in its impact: I am about 60 days out from my next Ocrevus infusion. Maybe I’m just running out of gas because I need a fill up. I’m sputtering around on fumes. This makes me question my assumption that this drug is not working for me. Maybe it is? Maybe my expectations are too high.

This is all relevant because I am going to see the wizard himself in a few short days. My appointment with The Great Scott is on September 4. We will discuss all of the happenings. He will look at my rollator and ask me if I’ve given up. I mean, he won’t really say that or even think that but it’s what I will see when he looks at me whilst talking into his little recorder device, “Patient is still working full-time, continuing to decline but considering other options for treatment. Patient looks tired as hell. Also, her mobility aids are cool as fuck.” He won’t say any of those things but I know he’s thinking them.

Lemtrada is the next DMT (disease modifying therapy) that I am considering. I’m told it’s hard as hell. I’m told it could take me out for a few months in a way I’ve not really experienced yet. I’m also told it can give me some hope for getting some of my life back. And then told by others that it could take more of my life away, without having bad intentions at all. It could literally go either way. It could be awesome. It could be terrible. It could give me yet more things to deal with like new side effects, more maladies that result from basically  destroying your entire immune system in the hopes that it will grow back in a more functional, reliable form.

It could be awesome. Or it could be terrible. Or it could be awesome AND terrible.

I know myself well enough to know that I’m more than likely going to give it a shot. If there’s even a shred of hope that this dizzying decline could be slowed down even a tiny bit, I’m going to grasp it. TGS asked me at my first appointment what kind of patient I wanted to be. We both agreed that I wasn’t a good “sit back and wait and see” kind of girl. Until remyelination drugs are a real thing, the options out there for slowing down this very efficient and aggressive disease are limited. There’s a good one left? I’m probably gonna choose to give it a shot. How could I not?

All of this thinking about diseases and drugs and life and work got me thinking about one of my first jobs in advertising. How’s that for a sharp left turn? I worked for a man named Jim Ficco. He was the president of Ketchum Advertising when I worked there as a tyke circa the early to mid 1990’s.

I only worked for Jim because the job I originally applied for required “packaged good experience” which at that time was like having a pedigree in how to sell things in a grocery store, the formula was that defined and specific. I remember at the time thinking to myself, well if you can’t get a job working on Heinz without packaged goods experience how does one even GET packaged goods experience? But I didn’t get that job and it turned out to be the best thing that ever happened to me. Jim liked me. He saw something in me. So he asked me if I wanted a job working for him on new business. I would be “The Spark.”

Being The Spark basically meant that I was a glorified telemarketer where I had a giant data base of prospects that I was to call every day. I would do 50-75 calls a day. The Spark sent out weird packages to get the prospect’s attention so you’d be more likely to take my call. One of them, for example, was a brick with our Ketchum logo on it. I send you a brick. I call you to ask if you got the brick. We get to talking. We start talking more often. Your company decides to put their business in review, as any company is likely to do at any point in time (there were scientific percentages behind this methodology sold to us by a consultant that said the entire trick of advertising agency new business was to be in the right place at the right time). It was a numbers game. You got my brick. You remember me because I call you all of the time just to talk. You invite our company to be in your review because you know me. You like my hustle. I learned this method in a three-day training session that I remember like it was yesterday. It was held in the Cornell Club on East 44th street in Manhattan. I was the only woman in the training session. I was 26.

Shockingly, this whole Spark thing worked. We got into some really big  pitches. We even won some. The thing that was so cool about this whole experience is that once a business was put into review, as the Spark, I got to work on the pitch. I got to sit in conference rooms with the senior-most people in the agency. I learned from the big brains who led departments (I’m looking at you, Janine) how to put together a persuasive argument about why a company should hire our company and not another one. This isn’t something youngsters like me got to do all that often. I was in those rooms out of pure luck. Because I didn’t get the job I really wanted. And because Jim liked me.

Jim Ficco was  a complicated man. I used to say I got smarter just by sitting in his office listening to him talk. I also learned how playing that role in a big company like ours tended to bring out the worst in people. Jim was either beloved or hated. There was no in the middle. I loved him. He taught me so much! He gave me the most important thing anyone could at that stage in my career. He gave me access. He put me in the room where it happened and that was everything. He literally taught me how to think.

Jim yelled at people and treated them badly when emotions got high – and in advertising, emotions got high a lot. He was derisive and emotional and scary sometimes. I was never on his bad side, thank goodness, but I knew people who were and it never ended well for them. I knew he was complicated. I knew he didn’t have to be such an asshole sometimes to get the best out of people but I couldn’t begrudge him the simple truth that he was usually right. The dude was wicked smart. He had a colleague who was the nice guy. The head of account service was the beloved personality. Dave was good-looking and kind and empathetic. When Jim yelled at you, you might find yourself in Dave’s office being consoled. They were like the yin and yang of my early advertising training. I knew from the very beginning that I was more of a Jim than a Dave. But I knew the value of both so I learned from both of them. How lucky was I? Twenty-six years old and somehow I found myself a mentor who inspired me by teaching how to be and how not to be all at the same time!

One early morning I was in Jim’s office talking about some not very pleasant things. See, I’d since moved on to running one of those accounts we had won working on new business together. There had been some budget cuts, some fee reductions that would impact the team. We were discussing what we could change safely and what would be bad moves. Sue, his secretary at the time, interrupted our closed-door meeting at 7:30AM because there was a call for me. They had taken my husband to the hospital. He had collapsed at work. I remember the flash of irritation that flickered across Jim’s face as he looked at me and said, “Looks like you better get going, kiddo.” He called me kiddo. You know I must have worshipped the man if I let him call me kiddo at a time in my life where I was wearing fake glasses with clear lenses in an outright attempt to look older and more serious. He got away with it.

The thing I remember most vividly is what was going on in my head as I walked to the parking lot to head to the hospital. I was annoyed. My husband owned a wholesale floral and plant business and he liked the physical aspect of his work. He had been unloading a truck full of giant palm trees and he collapsed. I remember assuming I’d pick him up and he’d have a broken something or other and I’d have to take care of him in the middle of the latest work crisis when he should have just let the kid who worked for him unload the damn trucks.

But the thing he had broken was his brain.

He had been operated on three times before I even made it to the right hospital. He had a massive bleed in his brain, there is a technical term for it that I cannot for the life of me remember now, but it was like an aneurysm on steroids. The scan they showed me of his brain when I finally got to the second hospital they had taken him to was almost entirely black. His skull was full of blood. Because he was a healthy 30-year-old guy, the surgeons were very aggressive in their efforts to get him back. The young doctor who met me in the scary backroom where they took the families with serious issues to face told me that she couldn’t tell me much. “In cases like this, we talk to family about a range of possible outcomes. On one end of the spectrum, he wakes up but is heavily affected both physically and mentally, may not walk or talk or be able to breathe on his own but he lives to attempt a comeback. On the other end of the spectrum he doesn’t wake up at all.”

I remember thinking, huh. That’s the range of potential outcomes? I’d like a new spectrum, please. But she was only being honest. I hadn’t even called our parents. I was there alone. I had to call people. I had a Nokia flip phone. Why do I remember that?

My husband never woke up. This post is already way too long, but the short story is he was gone after five days on life support in the neuro ICU at the Presbyterian Hospital of the University of Pittsburgh Medical Center. His parents insisted we hold the traditional “viewing” at the funeral home even though I knew Chuck would have hated the entire circus. They had lost their son. I did it for them. On the first night at the viewing there were people lined up outside to get in. Thousands of people came to pay their last respects to a universally beloved, happy, formerly healthy 30-year-old guy and to show me support. I was numb. I remember greeting people like I was at a party. So many people came from my job! The whole experience was surreal as if I was watching a really sad movie.

Jim Ficco had been diagnosed with leukemia about a year before Chuck’s death. He’d been through treatment a lot of times by this time in November of 1997. He had lost his hair and his wiry frame was even more thin than usual. He looked like a skeleton. He hadn’t yet resigned from his position at Ketchum but it wasn’t long after Chuck died that he did have to resign.

When I looked up and saw him walking toward me in the mayhem that was the funeral home scene, he didn’t even try to smile. He just took me by the elbow and guided me to a bench off to the side, away from the crowds. I don’t remember everything he said to me that night but I do remember him telling me to take my time coming back to work. I panicked a little when he said that. “You’re not going to fire me, are you? I don’t know if I could handle that right now.” He laughed. “It will all be there when you get back, kiddo. Even me. You’ll come back and probably take my job someday. Just take your time,” he said to me.

I didn’t. You see, I needed something to hold on to that made me feel normal. I needed to feel secure and in charge of me. I needed actual security because the debt Chuck and I made together was now just mine. I spent 90% of every day in those first couple of years as a young widow in flat-out panic. You’d probably never have known it, had you met me at the time. I got to be an expert at pretending to have my shit together. I think about that time a lot now. The parallels are overwhelming. Major life crises have a lot in common, as it turns out.

The thing is, Jim Ficco quit his job not long after Chuck died. It changed everything for me at the time. Without Jim, the entire place was wrong. Well. It was for me anyway. It wasn’t long after that I left Ketchum too. Then Jim died in late April of 1998. I remember it so vividly. I felt like my last tie to my old life was now gone. I remember feeling utterly lost. Again.

I’m not even sure why I got into telling this really long story in the first place but I find myself thinking about Jim Ficco all of the time lately. I remember watching him get smaller and more frail the deeper he got into the leukemia treatment. He got smaller and small with each passing day. But he never got smaller to me. He was a force of nature. He was still a force of nature even when he looked like a shell of a human, in the end.

Some people may have walked away from this story feeling like Jim should have slowed down. Stepped back. Done things differently with the short time he had left. But I never wondered that at all. I only partially got it back then. I mean, shit, I was 30 when Jim died. At 30, I didn’t know shit from shinola about life even though I would have fought you ferociously if you had tried to tell me that at the time. But I got why he didn’t slow down until he absolutely had to. The day he walked out the door of 6 PPG Place for the last time that place was instantly not the same place anymore. It instantly became smaller. Less shiny. Not the place for me anymore. Not very long after that it wasn’t a place for anyone at all, when Ketchum Advertising was officially no longer.

What amazing memories I have of that time in my life! Yeh. Work was a giant part of my life even back then, for very different reasons but it was still a giant part of my life. It some ways, it saved me from some very bad potential outcomes that could have impacted my life in a very negative way. In other ways, it caused some other quite negative experiences! But in more ways it saved me. It saved me from myself. And saved me for myself.

I think about Jim a lot. Maybe even more now than ever before. I feel like he would get me. He would understand all of this. I’d probably ask him for his advice about Lemtrada, if he was still here. He’d probably say something like, “You’ll know what to do, kiddo. Do what’s right for you.”