This is a happy post about fear

Sounds like an oxymoron, I realize, to write a happy post about fear. That’s why I’m starting with the good news. I survived! Yet, as I continue to slog my way through what can now officially be termed my first major MS relapse, I’ve been thinking a lot about the mental toll this disease takes on a person.

I’ve never been a fearful person. I used to have a borderline unrealistic perception that I could easily handle anything that was tossed my way. I’m sure this comes from my upbringing. The generally happy world I inhabited wherein I was always encouraged, praised and celebrated for just about any little thing. It served me well as I got older. I was never an excellent student, I hated studying and I really disliked hard work (Hi, 20-year-old me? You shoulda tried a little harder).

But even my stunning mediocrity as a student didn’t appear to hold me back all that much. I worked hard (though I hated it), got the internships, got the jobs and I was on my way.

Fear had never been a major factor in my life until the first really bad thing happened to me as an adult, when my very healthy, vibrant and joyful husband died very suddenly when we were both just 30 years old. I was plunged into fear for the first time – and heartbreak, grief, horror and extreme sadness – but it’s the fear I remember feeling first because it was utterly foreign to me.

The things we planned together I would now have to experience alone. The plans we made and big dreams we shared went poof! In a matter of five days where my husband lay unconscious in a sterile Neuro ICU. I remember going home to the house we shared together, our little starter home, and aimlessly walking through the rooms that used to feel so small, almost not big enough for even just the two of us. All of the sudden those rooms seemed enormous.

Maybe it was my youth. Maybe it was pure survival instinct but I put on my ‘I can handle this’ face almost immediately. Oh, I was a hot mess in private, trust this, but I held it together for the outside world. I felt like I had to. There was nothing worse to me at that time than to see the instant looks of sadness, horror and pity that seemed to turn my way the minute I walked into any room. I would always be the tragic girl. I needed to pretend I could handle it. I had to support me now, alone, and I couldn’t fail. I kicked fear to the curb (at least on the outside) and threw myself into my work with a mania I didn’t even know I had in me. I was searching for lost security, a foundation of safety, the means to take care of myself alone, now, because that was what I had.

Since those days, (now almost a shocking 20 years ago), I’ve experienced difficult situations, problems that freaked me out, near disasters and family problems that definitely stretched the limits of my belief in myself, but I never feared I couldn’t handle it, help out or figure out. I’ve always felt capable. I like to fix things. I like to solve problems. I realized somewhere along the way that I had sold myself short in my twenties by allowing myself to believe I wasn’t really all that smart. I finally felt like I could believe it. There was very little I believed I couldn’t do (strictly mentally speaking of course! I would never run marathons or be an elite athlete but hell, I never even wanted to do those things anyway so that was A-OK with me).

More recently, I was reintroduced to Fear with a capital “F” when I got the call about my initial diagnosis of MS. I just sat there looking at my phone thinking…um, what?

What do I even do with this information? If you’ve read any of this blog in the past, you know it wasn’t pretty. I went downhill fairly quickly. My “aggressive” disease resisted treatment. I failed Tysabri. Went through countless rounds of high-dose steroids. Got approved for Ocrevus and had my first full dose in May of this year. Then, promptly rolled into my first grand relapse that knocked me literally on my ass, landed me in the hospital and now that we’re up to date, put me on yet another round of high-dose steroids in a last-ditch effort to get me back on my feet in time for an important meeting.

While all of that was going on, something happened deep inside of me. I became consumed by fear. It felt so foreign to me, that I didn’t even know what to call it at first. I was afraid of stupid things like my clothes not fitting or my face looking odd. I was afraid about big, huge things like what if I can’t work, think or excel in this career I’d spent almost the last 30 years building? What if I could no longer live in my beloved three-story house, my sanctuary I created for myself after my husband died so long ago, the house the one place I felt safe and always comforted?

There were even more giant fears lurking at all times like, what happens when I can’t walk? How will I dial my iPhone if I need help in an emergency? I’ve thrived living alone, blissfully happily for almost 20 years. What if someday I can’t do that anymore?

Those big fears are to be expected. I’d been agonizing about them in the back of my mind for months, maybe years, before my diagnosis put a point on the problem. It was the new fears that hit me after my recent relapse that freaked me out the most.

Little things. Things we all take for granted. I might suddenly not be able to stand up at any given point in time. I was shaky on my feet almost always and liable to fall down at any moment. I would be besieged with sudden and violent urges to vomit – whether or not I happened to be near a proper place to do such a thing (they are limited…trust me).

I was afraid to shower because when I closed my eyes I would immediately lose my equilibrium. I gave up on actual clothes and gave in to a daily wardrobe of pajamas and yoga pants that have never seen the inside of any yoga studio. I was down to showering once a week if I was feeling super lucky. I started to become desperate to get outside of the house.

So, I did. I decided to try and leave the house and made a few appearances at my office which I sorely missed. I’d walk out the front door like it was any other day but it all felt different than I remembered it.

It felt dark, although the sun was shining. It felt foreign even though I’d done this routine every single work day for the last 18 years I’ve lived in this house without even thinking about it. I felt vulnerable. Almost naked. What if there was nothing for me to hold on to? Why did this fucking cane make me feel even more unsteady? What if I couldn’t make it across the street from the parking garage to my office?

Crossing the street is an odd and singular challenge for me now. You have to look both ways then walk straight ahead. It’s one of the first things we’re taught when we’re old enough to walk outside alone. But when I look both ways the whole world starts to spin and I can’t just take a step like a normal person would. I have to regain my balance first and only then can I take a step and Jesus! By that time, I have to look both ways again or risk being mowed down by a bus. I could spend all day standing on the corner of Sixth and William Penn Place.

I was mortally afraid of all of the things out there that could hurt me.

It was all too much. I used all I had in me just to get to the office. There was nothing left of me once I arrived that could be of any use to anyone. I realized I needed to be productive at work. I need to be able to do my job. I can’t do that when I’m not able to think once I arrive. I get paid to think. Thinking is my thing. I was beginning to panic. Again.

Then the vertigo came back with a vengeance, then the sickness and oh, lookie here! My old symptoms are back now too. My dear sweet friends, weakness, debilitating fatigue, constant pain and wonky legs. How nice to see you all again! You bunch of annoying assholes.

A call from The Great Scott, an unprecedented same-day appointment at his request, and another round of high dose steroids…you know the rest.

The steroids are like the best of times and the worst of times for me. I almost instantly feel like myself again. The OLD me, the capable one. The fun one. The girl who can command a room and make people listen to what she has to say. This particular dose came at a really important time because I had a big important meeting, important for me to be physically present, and I was going to be at that meeting come hell or high water. Thanks to Vitamin P, I did it.

Of course, I’m really not the old me anymore, I just felt more like her. Getting dressed nowadays is always a giant challenge. I’d like to thank the folks at Universal Standard for my entirely brand-new wardrobe of stylish yet simple black dresses that I can throw on with zero effort and feel kind of cool. The shoe choice always trips me up – but I had to put aside my paranoia and choose shoes that would be least likely to trip me up (literally) and somehow also looks stylish? I think I achieved one out of two of those requirements because sometimes you really can’t have it all. I got out of the house clean, relatively presentable and feeling pretty good. My walking was shaky but not anything nearly as bad as it had been just the day before.

Getting to the meeting itself involved extensive planning. I couldn’t walk the two blocks from my leased parking spot near my office to my client’s offices. I had to pay to park at the client’s location, choose the closest handicapped parking spot I could find and then navigate the shortest possible distance of non-railing walkways in order to get to the security desk to check in.

On my way to the meeting, though, even though I left my house a full hour in advance to give myself plenty of time to arrive the less than 6 miles I had to travel to accommodate for my slow walking pace, I encountered construction at every turn. I knew I was going to be late. This was not a meeting you show up to late. I started to panic but I knew I just had to get there as quickly as I could so I tried to focus.

I got my handi-spot. Held on to walls to get to the main lobby to head up to the security desk to sign in. Then I remembered the thing I hadn’t accommodated for in my plans.

The escalator from hell that literally seems to move at a clip of at least 55 miles per hour that stood between me and the security desk at the top. I’m guessing this is some kind of purposeful speed setting in order to keep the productive people moving productively through their regular fast-walking, rushing hither and yon professional days.

This was a busy time of day. People were everywhere. I lost at least five more minutes standing there waiting for a path to clear so I could somehow get myself on to this high-velocity beast whilst carrying all of my work tools and myself to the top without falling face first on the grated steps. I have rarely felt that kind of abject horror not caused by scary baby dolls or evil clowns in movies. I was flat out terrified.

I won’t bore you with the details of the meetings themselves but suffice to say, people continue to amaze me on the daily.

The very important people with whom I was meeting know of my situation and were nothing less than incredibly gracious and forgiving of my auspicious and extremely annoying ten-minutes late arrival. My colleague who was running the meeting with me was, as he always is, simply the very best by just jumping in and keeping things rolling and generally being his all-around amazing self.

It hit me then that this feeling I always seem to cling to that I have to carry things all of the time because it’s my job to do so is also kind of bullshit. I’m surrounded by incredibly talented people every day, people I consider friends more than colleagues. They have my back. They literally always have my back. I held it together in the meeting and did my thing the way I always do but I felt a humanity in that room that is sometimes missing from business meetings. I liked it a whole lot.

A planned two-hour meeting turned into a nearly six-hour meeting that required a change of venue within the giant office building but my legs and my friends helped me make it. It was one of those days where you just feel in your element. I felt engaged. I felt excited. I felt like I was on my game for the first time in longer than I care to note here. Even ten minutes late, I felt kind of victorious personally speaking. Another miracle fueled by Vitamin P.

There was one last hiccup. At the end of our meetings, my colleague was staying for more meetings with other clients and I’d have to get back to my car alone. I was riding high by this time and feeling pretty damn good so I declined every offer from my friends & clients for an escort to the parking garage. I assured them I was obviously wearing sensible shoes (wink, wink) and I parked almost directly outside of the elevator door. I was not looking forward to the escalator from hell but I did it once that day, and I just took a deep breath and did it again.

When I got down to the parking garage on the Blue floor, it looked all foreign to me. I couldn’t remember the right way to turn to get to the right door that would plunk me right in front of my car in the handi-spot. Of course, I chose the wrong direction and ended up on the entire other side of the parking structure and had to walk a full 360 around, up and down a few ramps, to finally find my car while toting my giant backpack full of my heavy computer and my ever-present giant bottle of water.

About halfway around the second turn I could feel it rising in my chest. The panic. I had no idea how I could be anywhere near where I was supposed to be because nothing looked familiar and it all kept turning in circles as I walked. I talked to myself as I walked. “Keep going, you’ll get there, you’re doing great, careful now, don’t trip, go slow, you will make it.” And so on and so on until at one point I had this incredible urge to just sit down and cry for a minute until I got myself together. I’m not that person. I don’t sit down in public parking structures to cry. It was at that very moment when I turned another corner and saw my little black car just a short way up another tiny ramp. I almost gasped for joy. I made it!

I sat in the car for a second and just breathed. It wasn’t over yet. I still had follow up work to do when I got home and worked well into the late-night hours to get it done. But thanks to Vitamin P, the decency of other humans and pure strength of will, the fear didn’t win on that day.

I know better than to think it won’t ever win. I’m becoming used to this imposing terrible roommate I’ve acquired recently and I don’t much like him. He pokes me in the ribs as I’m walking out the door and says, “Careful girlie, you don’t wanna take a tumble now do you,” with his evil little laugh. I am resting and working productively from home today to help my body recover. I’m doing what I should be doing, and yet his voice still nags at me.

Yesterday morning I downed my last ten 50mg prednisone dose. Those hideous tasting discs of evil were the last I’d be taking for a while and I hated choking them down not because of how truly horrible they would taste but because now I have no idea how long I have before my body goes wonky again and I remember that I actually really do have MS again.

I’m going to take The Great Scott’s optimism into my heart and believe that my next full dose of Ocrevus in early November might be the one that puts me into remission for a decent length of time, this time.

TGS is so hopeful on my behalf, it seems ungrateful not to support his positive attitude. The Fear can’t have all the fun. I’m going to invite another roommate into our little happy home. I’m going to call her Hope, invite her in and make her a nice comfy spot on the couch.

The party was awesome (the party was horrible)

That’s me with my favorite clients and my boss.

This is me too. Well not really. But you understand.
All of the work to get to the big day was worth it.

Our new office Open House was a great success. All of that pre-party angst was over and things fell into place nicely. The last minute construction issues that had been keeping me up at night, actually got completed. Almost every single thing was done.  The office looked fantastic.

People came. Lots of people came! And it looked like they were having fun.

We had many guests in from the home office for the event since we were also having an agency-wide Town Hall meeting live from our new offices earlier in the day. I was the keynote speaker. I worked on my deck for days. I had such a great story to tell! It was a great celebration of everything we’ve done in our little office over the last almost 14 years and I was awash in the glow of finally, finally having the chance to talk about how we did it.

And it was possibly the worst presentation I’ve ever given in my life.

We had technical difficulties. The slides weren’t showing me my notes at all. I kept losing my train of thought. Then more technical difficulties made me lose it again. Even that was ok! People were super nice about it. It sucks to present to people via video conference in the first place let alone when your feed keeps going in and out and you’re not seeing your damn notes. I let myself off the hook (sort of). But I wasn’t happy. I moved on.

At the end of the Town Hall meeting, my boss made an announcement about my recent promotion while a slide on the screen showed a picture of Gal Gidot in Wonder Woman. I was beyond embarrassed. A little touched. And awash in irony.

Wonder Woman, indeed. I could barely stay on my feet. After the presentation debacle, I still had one more goal: Survive the party.

Surviving the party meant the following to me: Stay on my feet. Look like I was having fun. Walk and talk to folks around the office who were in visiting. Sneak out when it was technically over at 7PM without making a scene. Go home. Crash.

But when I woke up Thursday morning, I knew it was going to be one of those days (again). I was struggling. Pain. Unsteady legs. Lots of things going on probably brought on by stress, a long, long day ahead of me and a few too many long days behind me in the last week. There were a few other factors I cannot get into in a public forum but suffice to say I made things extra hard on myself. By accident. But still. I was a mess.

I had a plan. I was wearing something easy and comfortable (black of course) with flat shoes. I showered the day before so I didn’t have to exhaust myself getting clean right before the long day began. I had stacked the invitation list with people I’ve been dying to see but hadn’t seen in a long while because I’ve just not been up to socializing much.

This was one party I wouldn’t be able to cancel out of! I kind of had to be there.

My friends and co-workers took their turns holding me up, walking me to the bathroom, propping me up in handy corners and on available chairs. I didn’t eat much because I was so unsteady I couldn’t eat, socialize and stay vertical all at the same time. I had to pick two, like on the value menu at Panera.

When I have to be somewhere, doing something that looks totally normal to regular people for a perfectly normal amount of time, it’s not normal to me. My body goes into some kind of weird shut down mode. It starts to feel like that second picture above. My legs get super stiff and heavy. My knees ache and my back throbs. The pain tingling throughout my body is almost like a buzzing, like a constant backing track. My eyes go glassy and I start using the wrong words for the wrong thing in casual conversation.

My body doesn’t always feel like this, I promise you. Sometimes it’s merely a mild annoyance. Sometimes I just blow it off and take that day as a work from home day and move on. Sometimes they happen when you have life to live. Like last night. And you can’t avoid trying to play the game.

When this happens, you feel like a failure. You feel pathetic and sad. I mean, what it must have looked like! Me, being dragged around by my elbow, from spot to spot, looking like death warmed over and about to fall over.

People kept telling me how great I looked. I know I don’t look great. I look like a swollen, bloated Ursula the Sea Witch who’s been on steroids for a while and can’t stop eating and bloating like a giant water balloon that it takes parade handlers to keep on the ground. I know I do. I can see the pictures. I have actual mirrors in my home, people. I know what I see.

But someone not very close to me, said something very wise and surprising to me last night. She said…Only to you, Beth. You look sad, pathetic and busted up but ONLY TO YOU. Nobody else looks at you that way. It’s in your head. To the outside world, you’re killing this. Just accept that.

That made me think of cognitive restructuring and my last meeting with my precious therapist, Cheryl.

I was telling her how lately I can barely leave the house. I feel fat. Old. Ugly. I feel like a house frau who only wears yoga pants and baggy tank tops (because most of the time I am a house frau who only wears yoga pants and baggy tank tops). I looked in the mirror last week and thought to myself, “Well, my face being all distorted and puffy actually isn’t so bad because my wrinkles are barely visible! Winning!”

I was telling Cheryl that our decade long attempt to get me to deal with this failing in my sanity, was also failing miserably. My inner voices were louder than ever and even more hatefully aggressive. I had a new therapeutic request! A challenge if she chose to accept it, you might say.

I wanted to walk away from it. I don’t want to rationalize, know why or what for…I want it to be OVER. I don’t have time for it. It’s dumb. It’s wasteful and ungrateful and immature. It’s actually more than a little bit pathetic. How many REAL problems do I need to have, I asked Cheryl, before I can walk away from the imaginary ones? Who the hell cares what I LOOK LIKE? WHY DO I EVEN CARE???

Here’s the reality, folks.

My list of things that mattered in a day was quite long before this whole MS thing started. I had an official Persona. A thing to protect. I had to dress the part, act the part, and expertly play the part. My daily list of things to think about before getting out of bed and unleashing myself upon the world used to include things like:

  • what kind of mood am I in?
  • dress or jeans or something fun?
  • what kind of jewelry?
  • what shoes? high, higher or really high?
  • should I do elaborate make-up or keep it simple?
  • Who am I going to see today?
  • Am I going out after work?
  • how hot is it going to be today?

About 18 months ago, my list of things that matter in one day got strangely very short, very fast:

  • can I move?
  • am I in pain?
  • can I walk far enough to leave the house today?
  • can I get appropriate clothes on my body for going outside?
  • how hot is it outside?
  • (some things never change)

As Cheryl and I talked more about Public Beth, my well curated persona perfected over a course of 45 years or so, we started to realize something pretty obvious. I put the pressure on myself to create Public Beth. I thought she was what the world wanted. I thought being Public Beth was the path to happiness and eventual success. People seemed to love Public Beth and I fed off of that positive reinforcement like food from the gods. I really liked Public Beth. The mountains of selfies I used to post are all out there to prove it. I took serious pride in Public Beth.

I used to try really, really hard at all times. I was never not trying. Never. As I got older, I maybe pulled back on some things and simplified some routines, but I was a person who couldn’t not try. It is ingrained into who I am. I think I thought it was who I am, which in and of itself is a bit horrifying. But there you have it.

I felt like I had to adhere to these insane standards. I had to be the prettiest, the most stylish, the most successful and the most creative, the very most fun and delightful at all times. I had to be an “It” girl or I was nothing. Like I said, I did mellow out around 45 but I never really gave it up. I just changed the definition.

It’s too hard, now.

Now, I’m 50. I’m relatively newly diagnosed with a chronic degenerative disease. I often have little control over my limbs, so exercise is tough. I take drugs, many of them not just steroids, that make me bloat and gain weight. I am so tired all of the time that sometimes eating ice cream for dinner is less taxing than making a nice fresh kale salad.

Sometimes, at the end of the day I can’t lift my actual legs to take my pants off. It’s like they’re dead. When I get tired, it feels like lights in the rooms in the house of my body are shutting down one by one, room by room, until the house is totally dark and not a flicker of light can be seen. Maybe a tiny one in the attic. The one for my brain that can never turn completely off.

I know I don’t really  look like Ursula the Sea Witch (much), but after years of telling myself horrible things every time I get a glimpse of myself in a plate glass window or god-forbid a photograph, it’s what I see. Sitting in the chair at the hair salon before the cape is on is my very own personal hell.

So after the 5000th discussion about this issue, Cheryl taught me techniques for literally re-wiring my brain. She told me all about cognitive restructuring. I’ve been using my techniques so diligently! I believe they will work. I want to put Public Beth away. Just be regular old me. And worry about important things. Like my health and being happy more of the time and stop being so hateful to my broken, imperfect, not very reliable body.

It made me think of the party again and how having a public persona is what most people do. It’s how you play the game of life. Small talk is bearable for public personas. You laugh and say witty things and your eyes dart around the room looking for the person you’re supposed to be talking to next before you actually walk away from the person you’re currently talking to. I saw so many people’s eyes doing this last evening it almost made me kind of sad. Even when not constantly looking at our phones, human beings still have such a hard time focusing on what they’re actually doing at any given time.

Public Beth isn’t compatible with the real me. I might try to look like her on rare occasions (not all that easy with this moon face but hell, I like a challenge). I still try to use her to protect me even now. But she fails because she quite literally doesn’t matter anymore. She has ceased to exist. I miss her. I can’t lie. But it was probably time for her to move on.

I have more important things to care about. The public clash of Public Beth and Real Beth made it feel like there were actually two of me at the office party. The one outside that was trying so very hard to hold it together, just until 7PM and the one inside, the real one, who needed two friends to walk her to her car, one at each elbow, because at the end of that night I was broken. Legs turned off. Done.

It was a really awesome party. I did enjoy it. But I also hated it. I think I have a bit more time to figure out what I really feel about things that are really important. I have my internal mantra for my program of cognitive restructuring  to kill that hateful inner voice I have, but I may need to move on to the physical snap of the rubber band on my wrist.

I wasn’t supposed to refer to myself as Ursula the Sea Witch ever again. I was doing so well! Cognitive restructuring ain’t easy.

 

When did I become such a creature of habit?

Off schedule infusion day throws me.

The routine is different. I didn’t get my post-infusion egg souffle from Panera and that just feels wrong. I can’t take my customary post-infusion five hour nap because of several conference calls I scheduled when I THOUGHT infusion day was yesterday, so that sucks since I am struggling currently to stay vertical and conscious. This legal call to discuss client contracts at 3PM is gonna be SUPER fun as a result.

Also, post-infusion provolone sticks were an ingenious idea on my part but the sub-zero temps in Pittsburgh today mean they were no longer hot and gooey when they arrived, so cheese stick FAIL.

There was a new room of “sweet pumpkins” in the Wednesday group, some of them also newly diagnosed. Turns out none of us feels like we’re really getting what we need from our neurologist but since our neurologist is “the best” and all, we all feel the need to stay the course. When looking this disease in the face, none of us are willing to leave “the best” and risk missing out on some cutting edge new treatment that might be coming along. So we all wonder what our options really are, when you come right down to it. And we stay put.

There is an air of concurrent desperation and resignation in the infusion room that is hard to rationalize. Feeling both of those things at the same time is rather unsettling. For all of us.

Today I got a great recommendation from a fellow infusee about a new primary care doctor, so that was a great outcome. She said this doctor listens and cares and helps difficult things (like many diseases) make sense. The woman who gave me the recommendation doesn’t have MS. She has some kind of blood disease that causes neurological impairment, I didn’t catch the name of it. Her infusions are of something different than mine. I got the impression it was pretty hardcore because she wasn’t alone in the infusion room. She had a caretaker.

Sometimes my mind gets overwhelmed by all of the things people have to deal with in this life. Sometimes it quite literally blows my mind.

I’m technically off work now for the rest of the year. I’m sure it won’t be completely quiet but, for the most part, I am free. Maybe it will be a good experiment to see what life is like when work isn’t breathing down my neck or invading my thoughts every minute of every day.

I mean, that probably won’t actually stop so it’s a flawed experiment from the start. But it’s nice to dream.