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.

I cut my hair (and I didn’t post a pic)

This landed on my doorstep, along with some amazing fall treats. Much like pennies from heaven in the middle of a very bad spell.

This might seem like no big deal to you. If you know me, you’re probably thinking, “Well thank god because who gives crap about your hair? You’re way too obsessed with your damn hair.” And you would be right.

The thing is, I’ve taken no less than 300 different selfies of my new non-blonde hair from 30 different angles and in several different locations and lighting situations and I couldn’t bring myself to post a single one.

There isn’t a filter known to the Internets that could get me to feel differently about any of those (to me) hideous photos. I should note here that it’s not because I don’t love my new haircut! I do love my new, shorter, much darker ‘do. I haven’t not had color on my hair since I was probably 19 years old. I’m kind of shocked by how dark my “real” hair is. There’s still  little blonde left on the ends. To get rid of all of it, I’d have to buzz my entire head and I couldn’t bring myself to do that. But as of my next haircut all of the blonde will be completely gone. I kind of can’t wait. Then maybe I’ll do it all over again. Who knows?

I do love my new hair cut but I pretty much loathe the rest and I couldn’t bring myself to post a single shot.

I swear to you, this isn’t one of those posts where I am asking, nay, practically begging someone out there to reassure me that I am truly not a monster; that my eyes are broken; or that my perceptions don’t mirror reality, so give it up already Beth. This is decidedly not one of those posts. You might say those things, but you should know that there is no amount of protestations that will make me see myself any differently right now, or maybe ever.

I know it’s in my head. It’s been in my head for nearly ALL of my very impressive 50 years of life. It’s the barometer that I’ve always cared about, the only fact of my existence that gave me any reassurance that things would always be ok for me somehow because at least I was pretty. I’d always have that (even if I couldn’t actually see it with my own eyes). It didn’t matter. I’d have to take your word for it but that was almost good enough. I used to take and post all of those selfies because for that instant in time, I could see it. That thing you always told me in the comment section!

Being pretty was critical to me. It was, sometimes in my own twisted psyche, the only thing that mattered – why people wanted to hire me, like me, date me, marry me, reward me, give me chances…all of it. But I couldn’t see it for myself. I needed other people to tell me, show me, make me believe it somehow.

I know! This is pure insanity hence the reason I’ve been in therapy for fifteen years and the reason why at 50 years old I still have such a twisted view of the world. Pretty never mattered as much as I thought it did. It never mattered to anyone else as much as it mattered to me. I clung to it after every heart break and disappointment, every bump in every road. The first thing I needed to know after being dumped by a boyfriend was “Is she prettier than me?” I mean, good lord. That’s messed up.

I’ve read a few articles this week about whether or not MS ruined a person’s marriage. I get that and I can understand how hard having MS would be in a marriage or partnership. As you all know, I’ve often said out loud and with great vigor that the only thing that might make this whole late-in-life diagnosis of MS worse for me would be to have to go through all of this mess along side of and in front of another human. It’s too hard to imagine trying to be a good partner to another person when I’m so openly struggling to live on my own. I feel terrible for people who’s MS has so clearly messed up something so critical in most people’s lives. This disease takes so much.

I’m letting it ruin my relationship with the one who matters most. Myself. I can barely look at myself. I struggle every time I have to leave the house. I struggle even more when I’m forced to try and make any effort at all. Like on the days I actually make it into the office. I put makeup on and choose an outfit that works with my very sensible shoe choices – and pack up my backpack and walk out the door like it was any other day. But it has yet to feel even remotely close to any other day. I’ve begun to wonder if this is going to happen, and potentially get worse, after future relapses. I being to wonder if I can actually survive something like that.

There’s nothing attractive about pulling your bright green plastic puke bag from your backpack when the random wave of dizziness and nausea take over. Nothing can make you feel pretty after that.

When I got home from my pedicure on Saturday afternoon, the note above was in a bag left at my front door, along with a plant and some fall treats. The card fell out of the handwritten note when I opened it. I picked it up, read it, and promptly burst into tears. I never burst into tears. Well, almost never but it’s gotten a lot more prevalent since my diagnosis on December 15 of 2015 that I randomly burst into tears. But this time the tears just sprang out of my eyes, I didn’t fight them or even attempt to stop them, not that I could have if I’d even tried.

This face, this body, all distorted by high dose steroids, has become my enemy. It makes me fall down and not be able to get up. It makes me want to sleep 24 hours a day. It makes me hurt and spasm and tremor without warning. It makes me want to never leave the house when it’s hot outside and never actually leave the house for days on end this last goddamned hot, humid summer.

This face looks so much older than it ever has. I used to take great pride when people would tell me how I didn’t look anything like my real age. As if I had any control over the DNA my parents gave me so graciously! It made me proud.

Nobody has said that to me in a while now. If they did, I’d probably laugh right out loud. I might not look 50 years old but I feel like I’m 550 years old and nobody can tell me they can’t see that written all over my face. I’ve got steroid gut. I’ve got gray hair and I don’t even care enough to cover it up. I’ve begun to hate putting on makeup not just because I know I’ll have to have the energy to take it all off again at the end of the day – but because I don’t think it’s fun anymore. It’s no fun at all putting makeup on this face. In fact, it just pisses me off.

I miss myself so much! I haven’t seen myself in such a long time, that when I read this card yesterday, it was the first time it dawned on me that maybe it shouldn’t matter to me as much as it did. I want to be a bigger, better person (not just in my clothing sizes) where none of this matters to me. I sat in Cheryl’s office last time, I actually made it there to her office before I threw up, and I cried for a solid hour. WHY could I still care about all of this stupid shit when I have actual REAL things to worry about now? Why can’t I get over this once and for all? Why does it matter so goddamn much? No matter how much I resist it, how many times I’ve written about it both here and in my journal where things get a whole lot uglier…it’s always there. Like an irritating itch you can’t quite scratch for over 50 years.

OK. So here’s the best of the worst set of selfies I’ve ever taken since the advent of the selfie about 10 years ago. I do love my new hair. I do love seeing what color nature intended me to be. But I’d be a liar if i didn’t admit that I’m including it here, way down here at the bottom of my post, because then it won’t haunt me every time I look at my blog comments.

At least it’s finally convertible weather? For me anyway.

Effing MS. It ruins so many things. I need to figure out a way to not let it ruin the me I have left in me. It was never about the way I looked. I wish I had known that earlier.

Life is made up of a whole lot of steps

Think about the average day. From the time you put your feet on the floor beside your bed in the morning to the time you lift them off that same floor again when you finally lay down to sleep. Whether you’re a person who wears a tiny computer to tick off your ten thousand steps or whether you’re just an average under achiever like me (before MS) and you hovered more around 5,000 – in any case, that’s a lot of steps.

Steps aren’t all created equal. You probably take a lot of your steps for granted. The steps you take to get your coffee in the shop up the street. The steps you take in your house between rooms. The steps you take to the bus stop. The steps you take walking to and from your car. Those aren’t “big” steps but they’re steps just the same and until you face a time in your life where you can’t take a single step for granted, you probably aren’t very aware of them at all.

I got cocky. I know, I know. I do it every time.

I have a day or two that doesn’t completely suck and I get all over confident and start to think that maybe this isn’t really happening. Maybe I’m going to just keep feeling better and better and maybe I really don’t need all of these drugs I take every day…Maybe this has all been one big long bad dream that I am now going to joyfully wake up from and go back to being the average middle aged woman (who considers herself rather happily lazy). But no. That’s actually not the case. This is hella real.

I decided to do an experiment today and skip my morning dose of Ampyra to see if I really did need it. I mean, so many things have gotten a little bit better in the last week or so that I thought it was possible, at least conceivable, that maybe I didn’t need the miracle walking drug. I’ve been wishing I could cut down on my daily drug cocktail. I don’t really walk that well sometimes even when taking the walking drug, so I talked myself into the possibility that maybe it wasn’t really working so well at all.

I had a meeting this afternoon at a local high rise downtown office building not that far from my office. I didn’t set myself up for failure. I knew walking to that meeting from my office a couple of blocks away would be pushing my luck so I didn’t even try. I worked from home in the morning. To be honest, I felt rather exhausted today for the first time in a week or so and I felt like I needed the extra rest that would result from not going into the actual office before the meeting (fewer steps…it makes sense). I drove myself to the meeting but as soon as I stepped out of my front door I knew I had made a terrible mistake.

I’d forgotten how bad frankenlegs can be!

I was walking in my head, but the messages were definitely not getting to my actual legs. My legs were dragging. My gait was wonky – as if I’d spent the morning drinking strong hooch and not resting up for a client meeting. I was walking into walls and banging off of trash cans. I tried to park as close as I could to the entrance to the building but even in the parking garage under the actual building, the number of steps you have to walk just to get inside of a high-rise office building is more than you’d think. The handi-spaces aren’t very close to the elevators at all (the close parking spaces were all marked “reserved” and I can almost guarantee they were occupied by able bodied walkers). The entrance I went through was a little further away than the usual one I go into and that meant more (guess what?) steps.

When I parked, I realized I had to pee. I wasn’t sure where the closest bathroom would be (the bathroom that would require as few drunk steps as possible) but when I finally got to the elevator I noticed with joy that it was located one floor down on a lower parking level. I pressed the button down, and not up, where I was actually going, hoping the extra steps to get to the bathroom wouldn’t be too many for me. I saw the bathroom door just outside of the elevator doors as they opened and I heaved a sigh of relief! Not too many extra steps. It was a single. I tried to open the door. It was locked. I waited about ten minutes. I knocked. It wasn’t occupied it was just locked. Awesome.

I head back up the elevator to meet my team in the upper lobby by the security desk where you sign in for meetings. The escalator to get to the upper lobby moves at some insane break-neck speed that required me to focus and concentrate really hard in order not to break my neck whilst jumping on. People are walking very fast all around me. Some of them are obviously annoyed with my hesitation to get on the escalator. They have places to be! I ignore them. I’m used to being in the way of other people who are used to walking anywhere and everywhere without any effort as fast as they please. Don’t they think I’d LIKE to walk faster? Probably not. They assume I’m lazy or just in their way.

I make it to the top of the escalator and explain my leg predicament to the three co-workers I was meeting and told them I was going to be walking extra slow because my legs just weren’t, well, super operational. They were extremely understanding. They walked slow (really slow) with me. I was surrounded by support as I stumble walked to the elevator to the 57th floor. If you’re wondering, that’s a lot of steps between the escalator and the elevator bank to the 57th floor.

When we arrived on 57, there was yet more walking to the conference room where our meeting was to be held. My co-workers, again, were awesome. They stood around me like a fortress, making it almost certain that if I did fall on my face, one of them would break my fall and probably help me back up again. I was grateful for the support and embarrassed that I needed it. I’m supposed to be in charge. I’m the leader! It does a number on your psyche to hobble to a meeting. I mean, I’ve done it before. I’ve done it a LOT in my recent past but it never gets easier. It never stops being frustrating, embarrassing, and just plain annoying but having people around you who get it does make it a bit better.

I made it to the conference room but then I remembered I had to pee. Guess where the bathroom was? Right. Exactly. It was around the bend, through the kitchen and to the left, which is exactly the path I just stumbled to get to the conference room and now I would be doing it three more times. Mandy, one of my co-workers, offered to walk me there. It’s humiliating, no question about it, but I was in no shape to turn down an escort to the ladies so I gladly took her up on it. Bless her. Really. Life with MS would suck (even more) without understanding people.

We had a great meeting. I’m still me (especially when sitting down). My addled feeling stopped the minute I sat my ass in the seat around the conference room table.

But I couldn’t get it out of my head. Walking, not very far, is a fundamental part of life! What would have made this experience better? I started to think about it. What walking aid would even help me in this situation? A cane won’t help my legs remember how to be legs. A rollator would make it even harder to navigate escalators that move at the speed of light. A scooter? Would I have to get an old lady car to accommodate my giant scooter so I could scoot from the parking lot to my destination (somehow) following the signs that indicate that you have to go completely out of your way to get where you’re going if you happen to need handicapped accessible pathways? None of these options seem workable to me.

Thank god I had some Ampyra in my bag and I popped when once I got to sit down but I still had some time before it would smooth out the walking signals and I know the whole concept of medication needing to maintain therapeutic levels to be effective. I got even more pissed at myself for experimenting with something so important. I walk funny WITH Ampyra. Without it, turns out, I can barely walk at all. Color me informed.

This is on my mind because I have some potential work travel coming up and I’m trying to get my head around how I’m going to manage that in my current state. If driving to a meeting in my own town causes this kind of consternation, imagine what happens when you add in a couple of airports, a southern climate (my travel would be to Atlanta. In July. FML). I’d have to be in good enough shape once I arrived to not only function but to engage, interact, be delightful even. Or make words in sentences that make sense, at the very least.

I thought I’d be farther along by now.

This disease isn’t moving at a speed that I find acceptable. I got cocky. A couple of good days had me booking airline tickets and throwing caution to the wind. A really bad day made me realize how bad an idea that is, right now. Right now? Right now I can manage only the fewest possible steps. I have to plan every detail of every day like a military operation focused on efficiency and minimizing foot traffic as if my life depended on it. When I’m home, I know where to park, where the paying machines are, where the bathrooms are, who I can call to help me, what my escape routes are in case of extreme distress…all of it! It’s not easy but I do it.

Toss in a trip down south for a day of executive training and all of that goes to hell. Will a cane help me? A rollator? A goddamn segway? Good lord. Imagine the damage I could do to myself and possibly others on a segway! I shudder to think of it.

I’ve already reached out to explore my options for attending remotely. I know people will understand if I can’t pull it off just yet. I think so, anyway. How long will that patience last? How do I not consider that question? It’s valid. But I don’t have room for it in my broken brain right now. There are too many other things to consider…like what I’d do if I happened to pee myself while hobbling around at super slow speed in search of a bathroom on unfamiliar turf.

Here’s what this cursed disease is teaching me.

Don’t get too cocky. You will be knocked on your proverbial ass. Keep trying, by all means keep trying, but also be realistic. Your B cells are still being killed off in droves and your body isn’t reacting well to the process so give it some time, girlfriend. Patience is a virtue and it’s also not an option in your life just now so suck it up, buttercup, your steps must be numbered and that’s just the way it is for the time being.

But while you’re doing all of that, don’t lose hope that every step won’t haunt you for the rest of your life. This will get easier. You will get used to it OR you will get you a goddamn segway. One way or the other, it has to get easier.

Oh. And stop experimenting with your medication, Einstein! The world is full of so many steps. Stop making things harder for yourself for the love of all that is holy.

And it continues. Sigh.

The most important rule of MS Club

I almost hesitate to say this out loud (or in writing, which is the same thing, really, maybe even worse)…but I’ve been feeling a little better these last few days. Not “jump out of bed and run a marathon” better. Not “these boots are made for walking” better. Nothing quite like that.

Just not quite so bad, better. I took a shower yesterday. I didn’t feel like I was going to perish. I didn’t have to take a nap after my shower. Also, I woke up several days in a row without the aid of an alarm while it was actually still morning. I was on “vacation” from work last week so I had the luxury of not setting an alarm. Even so, I found myself awake and quasi-mobile well before noon. Imagine! Also, I noticed last week that I haven’t been eating Ibruprofen like skittles.

Strange things are afoot.

Do you know what happens when you’ve felt like utter excrement for so long and you start to feel even a teeny tiny bit better? You want to do ALL OF THE THINGS. ALL. OF. THE. THINGS. Every last one of the things. But then you remember that you’re a member of MS Club.

The Most Important Rule of MS Club is you need to never forget that you’re in MS Club.

This means something pretty simple. Definitely do NOT give in to the urge to believe you can suddenly do all of the things. And for the love of god, don’t try to do even two of the things at the same time on the same day. Just ease on into the whole not feeling like death warmed over thing and take it slow. Very, very slowly. Do not push yourself to pre-MS levels of expectation thinking some crazy ass miracle has occurred.

Just pump your brakes and take it slow.

Go to bed early after a long day in the office (I wore makeup and clothing and walked to and from my office without falling and omg it was awesome).

Do not stay up late writing all of the blog posts that have been swimming around in your broken brain for days now. Just jot down some ideas so you don’t forget what they were and then GO TO SLEEP. You need to work again tomorrow.

In that spirit, following are some of the blog posts I want to write but will not write on this night because I am a responsible adult with Multiple Sclerosis. Consider it a kind of “coming attractions” preview:

– Is it MS? Or is it middle age? An exploration of the age old answers to the burning question: what is really happening to me?!?

– Not all Flat Shoes are Created Equal: an exhaustive treatise on why flat black sandals can be almost as bad as four inch heels.

– How many days can one stay inside one’s home with the air set at 64 degrees before one is officially considered a shut in?

– Cane/hiking poles/rollator…which MS mobility aid will I be least likely to injure myself using and how does one decide?

– When your doctor cancels your appointment without explanation is it ok to send them a bill for your pain and suffering? And other MS Specialist dilemmas.

– What does “feeling better” really mean? Better than what? An existential debate.

– Witty replies to the question, “how are you?” That are not instant conversation killers.

…these and many more intriguing topics will be explored in future episodes of bethybrightanddark.com.

But they will not be written on this night. On this night I’m going to allow myself to read one chapter of my book before I close my eyes. I’m going to attempt to get a good solid eight to ten hours of sleep. Then I’m going to try to wake up tomorrow, put on suitable outdoor appropriate clothing, drive to my office downtown and attempt to do it all over again. Two days in a row!

Ideally, I will accomplish all of this while also making a better shoe choice than I made today. It’s gonna be awesome.

When everyone else seems to be drinking lemonade.

I’m a member of many Facebook groups dedicated to the transition to the new goo, Ocrevus, because I was looking for any information at all from any source at all about what to expect from the very, very new disease modifyer.

Protocol seemed to be all over the place. Some people were forced to do the 60-day flush (like me), others were told to start the new goo immediately without a wash out.

Initially most of the posts were about what to expect during the infusion. I guess because I had been on Tysabri for 15 months before the transition, I wasn’t all that concerned about the infusion experience itself. I knew to expect it to take longer. I knew I would get Benedryl and Solumedrol prior to the new goo. I was fully prepared for the experience. I trust my infusion nurses. I was looking forward to seeing them, really.

What I was jonesing for in my social media trolling, were stories of how people felt after getting their first full dose. I was dying for any reason at all to feel optimistic. I needed to believe I could eventually feel better, that these persisting and worsening symptoms I was experiencing since the two month flush began would eventually get better. I wanted to believe, very badly, that I would get better. I’d heard stories. I’d heard people say they felt better almost immediately. I wanted to hear more of those stories and get an idea of what was really possible related to the very mysterious new goo that nobody seems to know very much about.

The two month flush was not a good thing for me. I got to the point where I was before I started any treatment at all. I could barely walk. I wanted to sleep 24 hours a day. The heat paralyzed me. After taking a bit of a nose dive that felt very relapse-like, The Great Scott put me on a three-day course of high-dose Prednisone. That was after my second 1/2 dose of the new goo. I was starting to panic. I really needed to feel better and I just kept feeling worse. I swallowed those bitter (literally) pills by the handful with joy because I was that desperate to feel better.

The Facebook groups that I joined to get information from other patients started to have the opposite of my intended effect, though.

In short, they really started to piss me off. Post after post of “I can walk again!” Post after post of people writing about regaining use of formerly useless limbs. Some no longer using previously necessary walking aids. Their hands and feet were no longer numb. Their vision was coming back in their eye they had trouble with for years.

People were feeling fan-freaking-tastic all over the internet and I’m over here taking a slow, infuriating nose dive into becoming a hermit who can’t walk more than a block because of the incredible weakness in my lower body.

I have new symptoms I didn’t even have before! I have trouble lifting my legs now. It used to be only my right leg, but then it was also my left. Putting on underwear, shoes and pants required sitting or holding on to something with one hand. My problem with my legs isn’t the mechanism of walking (this is kind of complicated) but I don’t have the feeling I used to have of my legs not knowing what to do when my brain told them to walk. Ampyra really helps me with that problem. It still does. My new problem is overwhelming weakness. My legs feel like they could go out from under me at any minute. I walk more like a drunk than I used to before the two month flush. I find myself holding on to walls, telephone poles and random strangers. I’ve finally opened my mind to the idea of getting a cane. It’s that bad.

The most noticeable new/old symptom I’m experiencing is pain – overwhelming pain in my back that makes me feel like I can’t stand up for longer than 10 minutes. I never thought Tysabri did much for me, but it must have been doing more than I thought because I haven’t had pain like this in a very long time. It’s what makes me need to lay down in the middle of sheet changing. It’s what makes standing up and socializing at a party virtually impossible. It’s what makes Ibuprofen qualify as one of my major food groups.

The steroids made me feel better for about ten minutes but then left behind their usual pleasantries – moon face, apple belly and camel hump. Yeah. You read that right. In my research about how long my post-steroid uglies might last, I found out that Prednisone at very high doses not only makes your face look like a giant pie, but it also contributes to the redistribution of fat in your body (hence the “apple” belly and camel hump at the top of your back).

I mean. If you know me in real life, you already know about my obsession with my hump. I could talk about it here, but suffice to say it’s a form of insanity resulting from a life-long posture problem and a collarbone not quite set properly from a childhood accident that leaves me with a sort of hump-like thing at the top of my back behind my neck. Most people who know me will tell you they think I’m insane. They will tell you they can’t see my hump. They are liars.

You might also already know that having a quasi-flat stomach was kind of my only feature I could generally embrace. I’m a hippy Italian woman. I have always been “thick” as the kids call it. But thanks to never having giving birth, and some good luck, I never really had a gut. I never had wash-board abs or anything even close, don’t get it twisted, but my entire wardrobe is built around not having a giant belly. That wardrobe is rather useless right now.

You might be laughing at the irony of how these particular side-effects would be so terribly bothersome for me. I’m eating vegetables and drinking water and doing all the things they say you should do…to no avail. I still have all three…the Prednisone trifecta of things to make me more miserable. The damn steroids didn’t even make me feel better long enough to make any of this even close to worth it.

I would tell you these things no longer matter to the newly not-vain me, but they do. I still hate that I can’t just throw on clothes and feel OK without thinking about it all that much. I still hate that my face looks like a puffy, giant, squirrel with cheeks full of nuts.

I really hate that my other more valid and important symptoms do not appear to be getting any better. Newly Nice Nurse Carol advised patience. She taught me about cytokines and what happens when you kill a lot of B cells in your body all at once (that would be a whole lot of inflammation). She advised me not to lose hope when I’m not immediately feeling all miraculously cured. She and TGS both believe if I give this time, this drug will help me.

I want them to be right. But patience is not my best quality either. Reading about so many people who feel so much better almost immediately almost makes me angry. It makes the following words swim around in my brain at the most inopportune times…

“What is wrong with me? Why can’t it work for me, too?”

I’m not giving up on the big O. I’m not throwing in the towel and accepting drunk walking as my new normal just yet. But damn. A little relief somewhere would be most welcome about now. I want to be one of those miracle post-ers! I don’t want to be mad at them. I want to share in their glee. I want to BE one of them.

This is to say that all of this just leaves me feeling like a bad person who can’t muster joy in her heart for others who are doing better than me. It makes me feel like I’m the only MS’er out here who has been given lemons but has not figured out just yet how to make the damn MS lemonade.

I’m more like sucking on lemons and feeling the heart burn and making funny puckery looks with my moon face all the while trying to hold my life together in some tiny semblance of what it used to be.

I think I’m starting to understand why people of faith benefit from their belief. It gives them something to hold on to when there’s not much left in this world to grasp. It gives them a way to keep believing in good and not giving in to their baser instincts. I am not a person of much faith. I guess life has shown me a few too many things that have led me to question the whole “benevolent master ruler who keeps us safe and happy” thing. But anymore, I get it. I find myself asking someone, (I’m not sure who, the universe maybe? The great goddess in the sky? The hippie Jesus I learned about in Catholic school in the 70’s?), I find myself asking something, anything, whatever it is, to give me the strength to not be discouraged by the good fortune of others. I find myself asking it to help me look at my moon face and say “You’re ok, kid, it was only a face. It’s not who you are. It never was.”

Don’t get me wrong. I know I am nowhere near as bad off as many of my fellow MS’ers. I still have so many things to be grateful for. I still haven’t had to have any discussions about catheters or wheel chairs and this in and of itself is evidence of how grateful I should be feeling. I still have a job that I’m still pretty good at!

I will be grateful. I will figure it out, eventually. I will remember how to make lemonade. Then maybe I will invite you to my chilly house to drink some, mixed with some raspberry vodka, to celebrate my discovery.

My new quest, my new thing to learn, is that life is not a competition. Having a chronic, degenerative disease is not a thing you can win. I might not see it, but we’re all dealing with something and you can bet it’s not something super fun. Being someone with a generally invisible disease, I should know this better than most. How could I have forgotten?

This good things that some of my fellow MS’ers are experiencing and posting all over Facebook about might be the first good things they’ve had in 20 or 30 years! I can see my silver lining immediately. I wasn’t diagnosed when I was young. I have done a lot. I’ve lived a lot and seen a lot before this hideous mystery took up residence in my central nervous system. I can still walk! Maybe it looks funny, but I can do it.

I’m only a year and a half old in MS-years. I’ve got a long road ahead of me. I better find that lemonade recipe fast. Anyone have Beyonce’s number?

 

Another day…another missive from The Great Scott

Last time, on bethybrightanddark.com, we found our heroine in some distress.

After a two month flush without meds, and the long awaited first dose of the new goo (aka Ocrevus), Bethybright was getting darker by the day. Body parts had stopped working as they should work. Pain was a constant companion. There’d been shaky legs, heavy legs and legs that didn’t really work like legs. There was some serious relapsing going on up in there at a terrible time for our heroine.

After another round of high-dose prednisone, with a face the size of the man on the moon, our heroine had one of the single worst days of her professional career on a day that should have been one of her best.

Poor Bethybright. She found herself dangling at the end of a very thin, very frayed rope and about to give up and let go (into bed, but that sentence felt more dramatic without that part).

In her anguish and professional shame, late at night while she lay in bed, Bethybright penned a lengthy email to The Great and Powerful Scott begging him for direction.

Dear TGS:

How could I keep getting worse? Was something terribly wrong? Did I need more steroids but what about my poor face and the fact that they didn’t really work last week? Is it time for me to give in and get a cane? See, calling on friends to walk you from the parking garage to your office and back again is somewhat impractical even when you have fantastic friends. Did I need a fallback plan until this new goo, which I’m starting to lose faith in, starts to kick in? I can’t just stay home until I can walk again, right? HELP ME TGS! HELP!

Signed,

BethyDesperatelyDark and Getting Darker

 

I waited for two days. Nothing. I called and left an irritated message. Nothing. I uttered the unspeakable words to my precious (aka Cheryl my therapist), “I feel like I need to start thinking about a new doctor.” And we both blanched and shook our heads violently, no, anything but that. Once you get to The Great Scott you don’t break up with HIM. You just don’t. It’s because of him that I got to be one of the first patients to get the new goo. He’s the man. He’s one of two men, really, but the other one is at UMPC and I can’t go there in-network, so TGS is the only man for me if I don’t want to go bankrupt. I knew I wasn’t ready to walk away. I began to hate him for it.

Three days later he called me. THREE DAYS.

“Maribeth, it’s Dr. Scott. Well, Maribeth, you fell off my to-do list last night and you are probably very irritated with me. I’m about to leave for a three week vacation, it’s a bit hectic here, but I want to get you settled before I leave. Please call Lisa in my office, she can talk you through some options. I apologize for my tardy response.”

He called me at like 9am, of course I missed the damn call. I was neck deep in conference calls at that time. But at my first break, I called Lisa and Lisa wins the prize for the most helpful member of the TGS team of not-so-great support staff. She was wonderful actually.

He gave me some options. He offered more steroids (I took a hard pass…not worth it, not even close to worth it). He said he’s gotten some anecdotal feedback that some patients who’ve slipped into relapse while on the two-month-flush have taken a little longer to start to see benefits from the new goo, but he still thinks it’s going to work for me.

He said he would support whatever I wanted to do. Steroids. Or wait it out. I decided to wait it out. But while I’m waiting, he’s sending me a scrip for physical therapy. This way, a therapist can help me determine if a walking aid would be helpful for me for the especially bad days.

I just said I might be getting a walking aid.

We’re not going to get into the fact that I just admitted for the first time that I need help walking on really bad days. It’s not a walking problem really – Ampyra helps my legs get the signals they need for walking almost properly. The challenge with my legs is that they are so weak that they threaten to go out from under me at any given, random moment. Part of the reason why the damn party was so incredibly hard for me was this issue with my ability to stay on my feet. It’s not so great right now.

But hey. If it’s going to take a while for the new goo to work it’s magic, a temporary cane is OK with me. It’s much more OK with me than rolling around on Sixth Avenue while attempting to walk into my office. That I am decidedly not OK with.

We’ll see. If I get a cane, I’m going to give it a name. I will know what it is when I see him. I already know it’s going to be a he.

I almost hate to say this, because it changes by the day, but I think I might be feeling a little bit better today. Ever. So. Slightly.

How do I know this, you ask? Well, I took a shower and didn’t feel like I was about to perish halfway through shaving my second useless leg. I’m also finding steps not quite so daunting today. I’m thinking about changing the sheets on my bed! If I have to lay down halfway through that chore, we will know I am full of crap and I don’t feel better at all. But at least I feel like TRYING.

Trying to try is a thing. I keep remembering that. I have to keep trying to try.

On our next episode, our heroine will attempt to make it into the office and do actual work in said office instead of in her living room. News at eleven.

Relapse: Part Deaux

If this keeps up, I’m gonna need a bigger nightstand.
He called me. He actually called me himself. He didn’t sic Evil Nurse Carol on me, The Great Scott all powerful and good called me back his very own self. 

I explained more about my situation. The intense pain. The inability to stand for very long (like less than ten minutes). The weird numbness in my hands. My fatigue hasn’t been bad at all and my walking wasn’t terrible (thanks Ampyra) but I was so weak I could hardly stand so that kind of prevented any distance walking right there. 

He listened intently. He explained his point of view, bestowed on me from on high, as he is wont to do. He believes I’m experiencing a relapse. He thinks the two month flush was the thing that allowed it to happen on top of the fact that we both thought Tysabri wasn’t really doing all that much for me over the course of 15 months I’d been taking it. Then he explained that the Ocrevus can’t be to blame, rather it was probably benefitting my fatigue levels a bit (he’s heard this anecdotally from the infusion nurses who report on patient response to the new goo). 

“Well, Maribeth,” TGS said to me in the dulcet tones of the expert, “I had hoped to avoid this but you keep giving me new challenges so I think we’re going to give you a little hit of steroids to help cut this relapse short. You’ve done well on them in the past. We need to get you feeling a bit better don’t we?”

I really give TGS a bad rap. He’s really quite wonderful when he’s not arguing with me and my well-researched points of view. 

I’m on low dose steroids (50 mg once a day for ten days). This means stomache drugs to ease the side effects of the Prednisone and a sleeping pill to make sure I’m not up 24 hours a day. My nightstand medical drawer runneth over but if this gets me through my eventful next week of work, it will be worth it. 

It will be worth the bloated face and swollen feet and hands. It will be worth torturing my liver for a little longer. After all, didn’t we just learn that I have a crazy healthy liver thanks to that awesome Hepatitus B scare? Why yes! Yes we did. My liver can take it. 

I’m praying this little boost juices me up enough to get through two big days next week. Client dinner on Wednesday night with visiting dignitaries. All day office festivities on Thursday culminating in the official Grand Opening open house at the new and improved Moxie Pittsburgh offices. I’m not even being remotely sarcastic when I tell you I’m really looking forward to both! I honestly wasn’t sure how I was going to pull it off with the shape I’ve been in lately. I might have been able to fake one day, but both was an exercise in magical thinking even for me, the High Preistus of Magical Thinking. 

I’m hoping Vitamin P doesn’t let me down. I know so many people who hate being out on the steroids. I personally wish I could take them all the time. I’d get used to having a giant fat face and swollen body parts, I really would. Just to not be in pain for a little while and to be able to function almost like I used to is reason enough to put up with a little bloaty mcbloat face. I’m losing my death grip on vanity, it would seem. 

And who am I kidding? I can’t come close to anything near what I used to do. That ship has sailed, thanks to my busted central nervous system. But I can come close to being enough. Enough to feel happy and confident that I did a good job. I guess I never realized before how important that is to me. I guess I just took it for granted. 

So, if I do anything terribly inappropriate at the big office party I can always blame it on roid rage. If Vitamin P isn’t enough to hold me up and I take a fantastic tumble or have to sit all night, I can blame that on my stupid disease but I’m really hoping to feel well enough to actually have fun. 

Remember that? Having fun? I used to be pretty good at that. I hope I remember how. 

I think the thing about The Great Scott that I love the most is how he always manages to give me that other thing I seem to run out of a lot lately. 

That would be the most elusive drug of all. The one that doesn’t fit in my nightstand. Hope. He gives me hope. That’s what makes him truly great in my book. 

Broken eyes, broken brains and the things we don’t talk about

That’s me trying to hide in the back. I was probably 12 or 13 – about the time in my life when someone called me “fat” for the first time. Also, obviously, one of my more awkward phases.
It’s Sunday and I find myself muddled. Again.

I think it’s the weekends where I find myself with lots of time to do nothing, that I struggle. Sometimes it’s not that I have the time to do nothing, it’s that my body demands that I do nothing. Even though I try to embrace this reality, this physical need for rest, I can’t help but resent it. The best part of this is that I usually/used to/generally live for rest and doing nothing. The struggle against it is what I find so odd. And off putting.

Ideas come into my head randomly that I find myself wanting to blog about but I’m struggling to find the right story, or way to tell the story is probably more accurate. So I don’t write anything. It’s easy to write about the details of my newly diagnosed MS experience. The symptoms, the processes, the frustrations and the health system dysfunction because that shit practically writes itself. And there are so many bloggers out there writing about that very thing, sometimes I feel like just another voice in a sea of voices that really all sound the same.

It’s the other stuff I want to write about but find myself without the words.

Why do I feel so ugly? Why do I hate looking at myself? Why do I have a face full of zits like a 13-year-old-girl going through puberty (all while being a recently turned 50-year-old woman who is looking more wrinkled and more haggard by the minute)? Why do photos of myself make me cringe? Why do I avoid looking at my own reflection in random mirrors or plate glass windows? Why do I just want to hide? Do I feel ugly, so I look ugly? Is this a mind over matter kind of thing? Why can’t I even take a selfie that doesn’t make me want to throw up? I can usually find my beauty in a selfie – but only in a photo I take myself. I can usually feel OK just realizing that what I see in the mirror and what other people see in the actual world are not the same thing (my main motivation for ever taking a selfie at all! Well that and good make up.)…but lately I find myself hitting ‘delete.’ I even loathe the pics I take myself, these days.

Why do I find myself thinking about my single status for the first time in…years? I have lived alone, mainly alone, for almost 15 years. I genuinely love my life, my solitude and mostly my freedom to do exactly as I please. Why do I struggle to admit, (even to myself), how long it’s been since I’ve had sex? Or even kissed a boy? Why do I find myself afraid of growing old alone when I had formerly accepted, more like joyfully embraced, this fact almost ten years ago? Why do I suddenly feel like a freak for preferring my solitude? Why do I struggle to find value in my life lived alone when it was never a problem for me before?

What is even going on up in there, inside my skull? My broken brain shouldn’t be this broken. But it is. Obviously.

The only way I can explain any of it is to explore my old ways of dealing with stress. The Old Me Method you might call it. It was pretty simple (and not entirely rational or even reasonable, but I’ve never claimed to be entirely sane). 

In times of extreme stress, or even just regular crappy days, I used to be able to fall back on “pretty”. Pretty was what I was. It was easy. I might not have been able to see it myself when I looked in a mirror but enough people convinced me of it over the course of my life on this planet that at one point I just decided to accept their words as true and ignore my own (apparently broken) eyes. Even when things were falling apart, I still had to be grateful because I was healthy. I was better than healthy: I was pretty. And being pretty meant pretty much everything (pun fully intended).

But I wasn’t thin, which was a struggle for me because my entire life I equated skinny with pretty. You couldn’t be one or the other you had to be both, in my opinion.

How could I be pretty if I wasn’t also thin? The answer was, I couldn’t. Or, worse, I would always be the “such a pretty face” girl. You have such a pretty face! I’ve heard that for as long as I can remember remembering. I loved hearing it even though I never really believed it. I thought people lied to me just to be nice.

My first boyfriend (when I was all of 13 years old) made fun of me for being fat after we broke up. Mutual friends, who were also 13-year-old boys, told me about it so I would stop openly pining over this kid who was obviously acting like a jerk. 

My first big “real” love told me more than once that I would be “the prettiest girl on campus” if I lost 20 pounds (yeah, he might not remember saying that but I will never forget it). Many years later, my husband’s parents had many excellent reasons not to like me, in their minds. They thought I was a gold digger. They thought I was too NOT blonde. They knew I was definitely NOT thin enough to fit into their country club lifestyle and they never even attempted to hide thinking any of those things.

My first major relationship after my husband died ended with me being unceremoniously dumped for a skinny girl, who was older than me, and in my opinion not nearly as “pretty.” I had put myself on the line for this guy. I gave him my whole heart, judgement of other people be damned, and believe me, there were a lot of people judging me in those early widow days. Then he abruptly left me – while he was still living in my house rent-free, because he said he needed room. He was feeling like I wanted to “own” him. Whatever that meant. I thought it was because in his mind he found something better. In fact, he actually said these words to me himself, when I once directly asked him tearfully how he could betray me like this. He said, “She was just too good to pass up, I guess.”

The most recent “real” relationship I had was with a guy who told me over and over again that he knew I could be thinner, because he’d seen the pictures where I actually was thinner, and I was in total control over it. I just needed to eat less and work out more. Easy. What a fucking idiot. He told me it was my mother’s fault I was overweight. She solved everything with food, he said. He said these things to me over and over again over the course of three years or so that we were together while also clinging to me like a parasite, trying to change every little thing about me. All while claiming to be crazy “in love” with me. I find it mildly confusing that his current girlfriend of many years isn’t anywhere close to thin. She’s lovely, but she’s also quite normal person sized – kind of like me. Maybe he grew up? All I can say is, better her than me.

Oddly, the only relationship I have ever been in (in my entire life) where I felt beautiful and accepted just as I am, is the one that I wasn’t allowed to tell anyone about.

He was not only much younger than me (way too much by all decent standards), he was also black which would have been frowned upon in my moderately racist Italian family, no way around that. But he wasn’t just black, he was BLACK. An ebony skinned Jamaican boy almost 10 years younger than me and totally inappropriate for me – not for any of these reasons. But because I got involved with him in the process of trying to get him un-involved with another one of my married friends. I inserted myself into a situation with the intent of making something right. It didn’t work, and somehow, we started spending time together. Lots of time. Quality time.

Don’t even ask me how that happened, it was really just twisted. But happen it did. I’m still being ostracized for it by those friends from my old married life. I honestly didn’t care. I knew what I was doing. I was happy. I felt beautiful and accepted for the first time in my life. It was worth being labeled a bad friend! I knew this relationship wouldn’t last (for very many practical reasons) and I was also OK with that. I didn’t really want a long-term relationship. I was mostly happy alone. But I loved it while it lasted and there’s no way around that one. How messed up is that?

What’s stranger to me is why can’t I stop thinking about things I thought I had dealt with years and years ago. I was happy! None of this mattered to me anymore. I worked my way through it. I never tried to run away from it. I faced all of it. I worked through it! Even Cheryl will tell you so. Cheryl has been with me through it all, guiding my work, making sure I wasn’t just playing. I was figuring it out. I won client of the year! More than once. It’s one of the things I am proudest of in my life (even though it’s not really a real thing, and I’m quite sure she says that to all of her patients – she can’t fool me). But I’m still quite proud.

Then suddenly out of nowhere, I get diagnosed with a chronic disease, my whole life changes in the course of a year, and all of the sudden all of this old, messed up shit starts flooding back…along with this hideous acne. My face is so messed up right now that my skin actually hurts.

It’s like I’m the Old Me again (in the bad ways, not the good young and fashionable Old Me) but without the freedom or the advantages Old Me had for disguising myself (those would be things like drinking too much, lots of sex, random dangerous behavior, really expensive and impractical shoes). I didn’t fear being alone because I knew I sincerely preferred it that way. But the truth was that if I decided that I wanted to be with someone, if I ever felt a little like “company,” I could do that any time I wanted. Hell, my cell phone was chock full of willing participants who I could summon with a quick text message (“you home?”) whenever I wanted to not be alone for a few hours at least…then I’d be blissfully happy to see him go.

I don’t feel that way anymore. I actually deleted most of those contacts from my phone.  That’s some final shit right there when you hit “delete.”

Being with a man can’t make me feel better anymore. Nothing can make me feel better except for me getting my head right. No movie or TV show or series of amazing books can make me better. No amount of alone time can do it either.

I am going to get through this (alone) just like I’ve gotten through every other thing. Why does this scare me so much, now? And why won’t these fucking zits go away?

Post Script: I almost didn’t post this entry. I felt too…fragile maybe? Vulnerable, definitely. My family reads this blog, some of my young family members. Maybe I’d like to avoid busting up the images in their heads of mostly wholesome Crazy Aunt Beth. People I work with read this blog and that’s even scarier. My entire career, hell the entire advertising agency industry, is based on your ability to project things like uber confidence, control and intelligence. It worried me to think what people would think, reading these things about me. I have to say, I’ve become a freaking expert over the years at mastering the art of the persona. It took effort and it was a full-time job. In some ways, it still is.

So, I decided to not “publicize” this post via social media where those people are likely to see it, click and read it immediately (places where I can’t easily control privacy settings). The reality is I write this blog for me. Part of me writes it in the hopes that I could help another newly diagnosed patient deal with this mess in a better, more informed way. Part of me writes it because I have always wanted to be a “real” writer. No, not even that actual bachelor’s degree I have in actual WRITING makes me feel like I have achieved enough with my writing to call myself a writer.

But mostly, I write this blog for me. I have zero idea why it helps me. I write in a journal every single day of my life and it has always been incredibly helpful to me. I still do it habitually. And it still helps. But knowing that actual people are reading my actual words, on this blog for some strange reason, helps me more. Could it be because I am a terrible narcissist? That might be part of it. It wouldn’t be the first time I’ve been accused of being such.

Another dimension of the phenomena made itself known to me recently, though, in a Facebook message from a friend who I really care about but don’t often see. It touched me so deeply – that someone I never see would not only think of me, but think of me as worthy of giving a very personal and special gift…it hit me like a ton of bricks. In my message reply to him I wrote, “You have no idea how much this means to me… Sometimes I feel like I’m disappearing.”

Or something like that. It hit me hard. I do feel like I’m disappearing. I feel like my edges are getting blurry and the things I believed to be right, true and reliable are just not. Call it growing up, call it a mid-life crisis – call it what you will.

But this blog helps me because it makes me feel visible, in some odd way. So, I am going to hit “post” on this really scary post. Luckily not many people will actually read it! I wish I knew how to get more people (not related to me) to read it. Maybe I should ask one of those digital marketing experts I’m surrounded by every day, about how to get more people to read my blog.

Fifty is nifty…and exhausting

A monumental non-MS related event happened to me this weekend.

On Sunday, February 19, I turned 50 years old. I know! Me. Fifty years old. I almost can’t believe it’s true. Oh, but it is true. I have the two-day recovery experience to prove it.

I agonized over what to do to celebrate this monumental occasion. My friend Sandy and I had been talking about it for weeks…What did I want to do? How did I want to celebrate?  She knows me well enough to know that doing nothing would depress the hell out of me but doing something  might have the very same effect what with the reality of what my life is like now. My post-MS life, I mean.

I knew I didn’t have a big night out in me. I knew I didn’t have the energy or the desire to have a big party out somewhere swanky like I’ve done for milestone birthdays past. I wanted to celebrate with people I love but I wanted to do it in my own home. I didn’t want to get all dolled up (hell, by the time I did the hair, makeup and put on real clothes I would be ready for bed!). I didn’t want to worry about looking cute or wearing the right outfit. I just wanted people I care about in my home with me, until I inevitably got tired and kicked them all out.

I needed people who wouldn’t be offended by getting kicked the hell out when I hit the wall.

So I had a pajama party. I had my personal party planner (Sandy, the best friend ever) instruct people to come to my house on Saturday February 18th at 6PM. Yes, at 6PM. This would be an early starting birthday party cause that’s all I have in me. I also told her to tell my guests to be dressed in the kind of clothes they would wear if they were hanging out at home having a wild evening with Netflix and delivery food. I had her tell people to wear their pajamas, in fact, because that’s what I would be wearing. Only one guest actually followed instructions, but I didn’t care. I was happy to be surrounded by friends in comfy clothes celebrating my first half century of life.

People brought amazing food. Sandy decorated with the usual “Look who’s fifty” kind of decorations. I had two glasses of champagne surrounded by people who are really important to me, while I sat in my favorite comfy chair. The guests all knew me (obvi) but some didn’t know each other. My family was there, including my sister (who made the amazing cake), my niece, my brother and some friends from work who are so much more than co-workers. And then a few significant others who have been in my life through thick and thin, and very many birthdays throughout the years…including my one and only Cheryl! Yes. I invited my therapist to my 50th birthday pajama party and she actually came. I don’t think anything could have made me happier.

I had been a little nervous about the whole thing – this seemingly random but important group of people I wanted to be with me while I celebrated in my own low-key way, might not like each other or have anything to talk about. But they all seemed to have fun! I know I did. And when I hit the wall? They actually cleaned up before they left. I mean, what could be better than that?

I planned my low-key celebration of me knowing that anything I did would likely wear me out for days and I’d need to recoup afterwards by sleeping more than a little and doing next to nothing and that is exactly what came to pass. Yesterday I slept in until 2PM. Today, I had big plans to run to Target for a few things I needed after taking a shower. Well I did take that shower. But I didn’t make it to Target. I just don’t have it in me. So I didn’t go. I did manage to get the trash to the curb. In my new life that felt like a major accomplishment and I am giving myself props for doing that.

My trash looks festive! We did it. Me and my friends. We celebrated, even knowing that my ability to do so would be severely limited, we did it anyway.

As luck would have it, our office was closed today for the President’s Day holiday so I have one more day to rest before my life begins anew tomorrow and my second half century begins.

I’m not sure what to expect. I know 50 is supposedly the new 30 and all of that but I am also eyeballs deep in this journey to get my health under some semblance of control and I’m nowhere near the end. I’m still trying to find the treatment that will work for me. I’m still struggling to stay awake. I can walk a little better, for now, but I have no idea how long that will last so I’m a little leery of getting too excited quite yet. I still feel more like I’m 150 and not just 50. That’s just the damn truth.

I guess this is really just like every other milestone birthday I’ve celebrated so far in this crazy thing called life. I have no idea what it will bring and I can only continue to do my best with what comes my way.

And if I have to do it in my pajamas? Well, so be it.

To wait for help or not wait for help

Spoons are precious.

That is the question.

I don’t like that I’ve become a person who requires so much help. I struggle with it, the idea that I am no longer the independent do-it-yourself kind of woman I kind of liked being for so much of my life. It always amazes me how many basic daily tasks are impacted by a lack of energy, balance, strength or coordination.

I struggle sometimes over which things are “worth” my spoons, and which are not. (For more info on this whole Spoon thing, go here: http://bethybrightanddark.com/2016/10/28/today-i-learned-about-spoons/)

I have this idea in my head that my energy, my spoons, should be wisely spent and not squandered doing dumb stuff. So if I need to carry a bunch of heavy stuff or do a bunch of banal chores, I tend to batch those things until I know I’m going to have some help around (thanks to my family, usually my nephew, who helps me out on the regular). This spoon conservation method seems like a wise choice, for the most part, but it has it’s downsides. Most of them are mental.

Asking for help, being helped, waiting for help – all of these things change the way you see yourself. They make you feel less than whole, unable, needy. I suppose there is a school of thought that if you are indeed those things (sometimes, I am all three), fighting that reality is a foolish quest. Accepting that you need help is part of being “disabled” and a harsh reality of having a degenerative disease. On the other hand, reminding yourself that you’re still you, the you you were before being slapped with the label “multiple sclerosis,” is pretty important, too.

It’s little things, mental things, things you think don’t matter that matter a lot, that can make the difference in a bright day or a dark day. Sometimes when you let yourself recover a bit by sleeping in until 1PM on a day off, you want to get out and do something normal that makes you feel normal. Just like other people who are…well, normal. (As if anyone actually feels normal! But that’s another post entirely.)

I got up. I threw on my weekend uniform. I gathered my things and ran some errands. Nothing huge. I had to ship something back from the holidays that needed to be returned. I had to get cat food. I was also hungry. So I needed some food.

After treating myself to lunch at Five Guys, I headed to Petco to get the cat food. I knew I could also use litter because, well, four cats pretty much means you always could use more litter. I hesitated…I had this giant bag of cat food. I had the paw friendly ice melter junk (it’s supposed to get snowy here tonight). Could I manage litter on top of all of that? Should I wait for help?

I decided I would get the litter, too. Hell. I was in the store! It seemed silly not to. I told myself I could leave it in the trunk and wait for help to get it into the house, later. There would inevitably be a visit or an opportunity to get my nephew over here this weekend when he could carry the heavy junk for me. I got three boxes of litter, loaded the entire mess into my trunk, walked a little extra back and forth to return my cart and get back to my non-handicapped parking spot. Then I drove myself home.

Sitting in my driveway, thinking about the stuff in my trunk, I was feeling like I needed to try unloading it myself. I needed a mental boost. I needed a bright day after a few that felt decidedly kind of dark-ish.

I took my time. Unloaded the cat food and the ice melt first, and left those on the porch. Then I got the litter – carried two boxes to the side door, went back to the car and got the last one too, and then went inside the house to drag them down the stairs to my basement – which I did, one-by-one, until the task was done.

I filled two giant contractor trash bags full of empty litter boxes and carried those outside to the trash. Then I went back outside to get the big bag of cat food still sitting on my porch.

I realize how boring this sounds. I realize that this isn’t such an interesting post and I’m not even sure why I felt the need to write about it at all. But the truth is, I needed that mental boost. I needed to do it myself.

I had to sit and rest when I was done. I chatted with my mom on the phone a bit. I fixed a chipped nail that had suffered damage from the chores (because it figures!). I took a handful of Ibuprofen. By that time, it was acceptable to me, in my head, to admit that I needed some spoon recovery time and I plan to lay low tonight, maybe snuggle up with my latest book (it’s a new-ish one from John Irving, my favorite all time author, and I am already engrossed).

For some reason, just doing that basic set of tasks, that to me felt anything but basic, gave me the mental boost I needed to allow myself the luxury of not feeling lame for having another rather low-key day. Kind of like changing that damn light bulb, yesterday. I need to push myself sometimes because not doing it kills my spirit more than doing it kills my body.

Oddly, it was my 76-year-old mother who taught me this lesson over this holiday break. We’ve been spending a bit more time together than usual because of the holidays and I’ve been watching her keep going, even when she’s in pain and struggling, because she knows that stopping would be worse. Watching her do things that are simple for many, but hard for her, made me understand this finally.

I know I need to be careful and not push too much. I know I need to be extra focused and diligent to make sure I don’t actually hurt myself. And don’t get me wrong! I’m not over needing help. I will always need help and I know to ask for it no matter how much I hate to do it.

But I’m starting to realize that taking my time, making many trips, slowing down and carefully doing the thing I think I can’t do is something my broken brain really needs. That seems like a good thing to use some spoons on, even if it’s not all that much fun or exciting.

It helps me feel “normal.” That needs to be enough.