Been there, done that (and I’m so grateful)

You have. Not me. And I’m so grateful for the wisdom.

Here’s the thing.

We call multiple sclerosis a snowflake disease and with good reason. MS is never the same for any two people. Things that are major issues for me, may not affect your friend who has MS at all. And I will be the first one to tell you to shut your damn pie hole when you tell me about your cousin’s friend’s grandmother who runs marathons with MS because…just shut it. We can still be friends that way. But I digress.

Things that have never gone wonky for me, may drive you crazy on the daily. There are many symptoms I haven’t yet had the pleasure to meet. And no. I’m not stupid enough to actually write down a symptom I do NOT have. That’s terrible MS karma and I’ve fallen victim to it before. Fool me once! You know how that goes.

The thing that amazes me lately, though, is not how unique and special my disease might be but how utterly normal and mundane my MS is in almost every way. The problem is that nobody of the medical professional variety has ever told me, warned me, or talked to me at all about some of the weirder things that can happen, therefore I spend a lot of time with this soundtrack flying around in my mind…

“Is it MS if I’m in pain all of the time? Is it a muscle pain or a nerve pain? When I put my head down and get that tingly feeling down my spine, is that my MS? It’s not a pain, it’s more like a tingle, but people call it pain and I don’t call it pain, so maybe it’s something else entirely…Is it crazy that (fill in the blank) is happening to me or is it just my MS? WHY WON’T ANYBODY TELL ME ABOUT THESE THINGS?!?!? WHY MUST I GUESS AND GOOGLE UNTIL I THINK I MAY GO MAD?!?!?

This soundtrack is the background music to my life. It started even before I was diagnosed.

My ever-patient BFF and fave sidekick in life had to listen to me say things things like this out loud constantly in the year leading up to my official diagnosis. The one instance that is most vivid to me was when we’d be getting out of my car to walk into our bar for what we called “happy time.” I started to notice that when I stood up after sitting for any period of time, my legs would do a little shake thing. Like a tremble. Before I took a step toward the bar.

In fact, I know I said something really close to this because my BFF does this awesome thing where she writes down crazy things I say over the coarse of a year and then prints me up a book full of them each year on my birthday. I guess I say a lot of crazy things? Go figure. But one day as we went to walk into our bar I actually said something to her like, “I wonder why my legs do this little shake thing when I want to walk anywhere. I’m like a shimmy waiting to happen.” Or something to that affect. A quote something like that went into the book that year among other equally weird things I might have said in that 12 month span. It was like a foreshadowing of shimmies yet to come.

I suppose the doctors don’t tell you what to expect because they don’t want you looking for things to “blame” on MS. It’s kind of a mind-screw (to be polite) really. They make you guess what might be your MS until you can’t stand it anymore and you ask then they say, “Well, Maribeth, that can be very normal for people with MS that presents like yours with lesions in the blah blah blah area and blah blah blah…” I actually hear the blah blah blahs because I’ve gone mad with rage just thinking of the time I could have spent not agonizing about the symptom du jour.

That’s where you guys come in, really.

I knew this blog was helping me, mentally speaking, just to have a venue for the overwhelming feelings that bang around in my head, bouncing into each other growing larger like molecules turning into evil compounds along the pathways of  my broken central nervous system. Those thoughts have to be released somewhere if anyone is even remotely capable of dealing with the hot mess that MS turns our lives into sometimes. But there’s been a surprising and awesome upside I never predicted.

As it turns out, you guys are much better at the advice giving and symptom checking than Google or The Great Scott (all due respect to the Big G, and the TGS). You guys knit together random posts and thoughts and things I share, then you come up with a pretty damn good explanation and send it to me via IM or on a Facebook post and I feel instantly more calm knowing that I’m not actually losing my mind.

The most recent example was when one of my personal MS-gurus, I call her Joda (the Yoda of my MS). Joda and I have never met in real life. We didn’t even meet in one of the many MS-related forums and groups. We met completely randomly through a mutual friend on Facebook. The serendipity inherent in this “meeting” kind of blows my mind more than a little.

So, Joda knit together a few things that led to a place I’d never even considered before related to how my body functions (or doesn’t) in the outside world. Those seemingly unrelated but probably related things are as follows:

  • When I make it to work, I now require a special chair for supporting my head and neck because I’m in so much pain at my desk I can barely function. This chair has a neck piece and makes me feel like I’m the commander of the Starship Enterprise (or “just like that really smart guy in the wheelchair? What’s his name?” said my friend at work. “That would be Stephen Hawking and probably not the best comparison to make to the sometimes crippled girl.” And we laughed and laughed).
  • The new chair helps, quite a bit, but it still doesn’t alleviate the phenomena that occurs where by at the end of any day (even a good leg day!) when after a few hours in my office, I’m practically dragging my legs across the street to the valet, praying I don’t fall down before I make it there. Like clockwork. Weird.
  • Then there was the day I posted about how my trip to Target nearly killed me, as I pretty much became Frankenstein about 1/2 way through the store. I couldn’t keep up with my mom (who was with me and getting more and more concerned the longer she watched me lurching around). And again, by the time we were walking back to my car, dragging my legs behind me like big stupid wooden logs instead of my formerly functioning legs. It was a good leg day or I wouldn’t have even considered a trip to Target in the first place!

These things can’t possibly be related. I clearly am trying to make connections between random things that have nothing to do with each other, I tell myself. Not everything is about my MS!

Until it is.

Joda, amazing font of MS wisdom that she is, happens to mention very casually that there could be one thing connecting these phenomena that I never knew was even a thing! This one thing that might explain why my home is usually the place where my body feels the best (which isn’t saying a whole lot lately but you get me).

It’s the lighting! Joda tipped me off to the one thing all of these places have in common. The lighting. The damn bright, jarring, previously unpleasant but never energy zapping, light that is pervasive in all public places.

This artificial lighting, fluorescent and otherwise, in public locations can cause symptoms to flare up temporarily. Well shut my mouth and get me to Google…and lo, there were stories among the thousands from people who have similar experiences. People who are forced to wear tinted lenses or actual sunglasses at all times in artificial light. People who suddenly can’t walk halfway through Target (they actually refer to it as “the Target effect!”). People who have trouble with bright lights when driving after dark (ahem). This isn’t something new! People have been talking about the Target effect for years and years all over the interwebs and yet nobody thought to mention that to me at any of my visits to The Great Scott. I guess they don’t want to “suggest” symptoms you might never have?

Whatever the reason, every little bit of time that I can save trying to puzzle out if I’m crazy or if it’s my MS, every little bit of that time is critical because feeling like you might be losing your mind while you’re simultaneously losing some pretty important physical functions is a shitty, horrible place to live. Feeling like you might be losing your mind is one of the worst things about having a disease that is such a snowflake, sometimes, but at other times, not very snowflake-like at all!

Just tell me I’m not crazy and things get instantly better.

I know this is a big ask. Clearly, if you know me at all either digitally or in real life, you are well aware that my sanity has been pushed to all new levels of delicacy. I nearly lost my damn mind during my first relapse. I literally thought if I stayed one more day in that hospital bed, I could be certified insane and put into another, entirely different, kind of hospital. I can go a little batty trying to figure out what time to shower is the safest for me on a particular day because there are so many goddamn variables that my mind bends a little just trying to think through how to take a damn shower.

Telling me I’m not crazy, and not lying, is a stretch on pretty much every single day. But as soon as Joda shined the light, Kara jumped in and corroborated and then Google verified the masses and masses of people with MS who struggle with the very same thing, I felt a million times better. I know that’s also not saying much lately, but any better is still better.

On the downside, I’ve discovered yet another thing that I have to plan around. Maybe I don’t go to Target so much anymore. I’ve got Amazon Prime for most things anyway, right? I sat in my office in my Stephen Hawking chair in the dark last week and you know what? Even though there is bright glaring light all over that place, sitting in the dark with just the glow of a desk lamp actually helped my pain. It does bring up concerns, of course, that I’m now not only going to be the girl who looks funny and walks funny but now I’m also going to be THAT person. The one wearing sunglasses indoors.

Maybe it’s not entirely out of the realm of possibility that part of the reason I love being home so much of the time is not only that I can hide from the outside world of normal and very fast walkers. It is also because home is where I feel, physically, the best. I am in control of nearly every aspect of my home. Except the damn steps, of course, but I refer to those steps as my daily workout, so there’s that.

I mean, I keep wondering when it will be that I can entertain the idea of air travel again what with it involving so much of every little thing that is bad for my MS. I think sunglasses will be a must for travel to occur. Also, at my super brightly-lit giant corporate campus in Atlanta I will now likely have to be Sunglasses Girl with the Draggy Legs, but hey. My brain still works pretty damn well and I have always enjoyed being the center of attention before it was a medical thing, so maybe it’s OK?

Nah. I will hate everything about that scenario. But I can force myself to remember the many times one or a bunch of you proved to me that I am not entirely crazy after all, and I will feel a tiny bit better.

I’ll take any kind of better I can get these days. I’m so amazingly grateful for this network of wise MS friends I’ve made over the past two years since my diagnosis in December of 2015. I get kind of misty just thinking about it.

The Great Scott may be great, indeed, but you guys are the real miracle workers.

Keep Passing the Open Windows

Finally a real top down day.

That’s the best advice I have, after beginning to come out of my very first significant relapse since my MS diagnosis nearly two years ago. Keep passing the open windows. I’ll explain more about that later, but first a few details.

I had two big meetings last week. One you already know about that I got through by the miracle of high dose prednisone. After 1000mg of Vitamin P, you can pretty much do anything.

But I had another big meeting looming the following Wednesday this time a lunch with the CEO of our largest client, someone I consider to be not only an amazing client but a good friend. I was beyond my steroids by almost a week. I know enough by now to know that Vitamin P high only lasts a few days for me, but I hoped with all of my heart the remnants would get me through this next hurdle on an unusually hot September afternoon. I mean really hot. Like 92 degrees record-breaking hot.

It made it. I had a lovely lunch meeting. My client did as I asked and allowed me to walk behind him and not in front as we left the restaurant just in case (I was definitely walking a bit wonky which still makes me feel self-conscious even after all of this time). I made it home, got into bed super early and told myself I would try to make an appearance in the actual office the next day. I was hoping that when I opened my eyes in the morning, the weird wobbliness would finally be gone, even though I wished the same wish every night since July 19 when this whole thing started and it hadn’t really happened yet.

The a-ha moment came as I lie in bed that early evening. I thought to myself, “That’s why this disease sucks so much.” I mean, there are a lot of ways in which having MS sucks but the biggest one is that it can (and does) change from day to day. You try to plan a week, but it’s futile. You think a particularly bad relapse is never going to end, especially when it’s your first. You truly believe with all of your heart that it will only get worse. You hit some pretty low lows. Your house, to which you’ve been confined for over two months now, starts to look shabby to you. You look around at your stuff, your precious comforts and you find them old, worn out and pathetic. You see cracks in walls you never noticed before. You wonder how long you’ll be able to live in this house with all of its stupid steps. You tell yourself it’s probably not very long.

Then you open your eyes some random day and boom. It happens.

You feel different. Not run-a-marathon different but can get out of bed and shower different. You manage to put on clothing and makeup and even actual jewelry. You leave the house feeling mortally afraid, but slightly hopeful that maybe you don’t have to be all that scared all of the time anymore. At least you don’t feel exhausted just by walking to the car. You get to the office and gingerly walk the short distance from the parking garage to the office only slightly terrified by the idea of crossing the street. You have a good day. You go home again and head to bed early (it’s now almost your regular bed time). You think about maybe doing it again the next day. Then you do.

The thing that keeps you off balance (pun intended) is that you never know, literally never will know, how long the good lasts before the bad knocks you on your ass again.

You realize that the days of making plans, any plans at all, are pretty much behind you. You realize that there might be really important things happening on one of those surprise bad days and you will be powerless to do a damn thing about that. You have to listen to your body. You can’t push forward when you haven’t the power to stand. You also realize that you can’t really plan little things either (like laundry, flower planting or social activities) because your ability has been changing hour by hour, sometimes minute by minute for months now.

When it’s over, it’s almost as jarring as it was when the whole relapse thing started!

You’re suspicious of how you feel. You feel good(ish) but are afraid to trust it. You want to feel optimistic and roll with it but what if it goes away before you actually make it to your office in one piece? You can’t trust your own body when it’s fundamentally not trustworthy, when crazy things like the damn weather can turn everything upside down in minutes.

Somehow, one decent day turns into three decent days and before you know it, the weather breaks and it’s almost a week. Is it really over?

Back to the explanation of my headline for this post. One of my favorite books by one of my favorite authors is The Hotel New Hampshire by John Irving. It’s a Dickens-like epic tale about the Berry family and their adventures (mostly maudlin, tragic misadventures) growing up in hotels, following their patriarch Win Berry who is the very embodiment of the word “dreamer.”

According to the New York Times review back in 1981, the major theme of Irving’s book was simple:

”The way the world worked – which was badly – was just a strong incentive to live purposefully, and to be determined about living well.” All the noisy slapstick, then, is Irving’s way of domesticating the malevolent vicissitudes of life.

The book can be read as a tragedy but it has an infectious hope throughout that refuses to let the maudlin, randomness of life ruin the Berry clan. Well. Not all of them anyway.

One of the kids, Lily, is small. She stops growing around 6 years old and never starts again. She is daunted by life as a person so small who feels things so very large. One of her brothers describes the sound of her crying to be the very sound of anguish, pain beyond pain, a gigantic wail that comes from the tiniest of bodies.

The children are told a story about a street clown named the King of Mice, who jumps out a window to his death one day after despair got the best of him. On a box containing his pets that was left behind are the words “Life is serious, but art is fun.”

Win Berry and his brood take the story to heart and remind each other to “keep passing the open windows” when they go through the sad, crazy, painful or unimaginable things that all families go through. They keep passing the open windows. It’s almost a family motto of sorts. Until one day many years later once Lily has grown to be a successful best-selling author, she finds herself in a terrible bout of writer’s block. She feels pressured to live up to her early success. In the end, Lily kills herself by (of course) jumping out a window. Her suicide note reads, “Sorry. Just not big enough.”

I don’t tell you this story to freak you out or to make you think that I’ve ever considered not passing my own open windows throughout life. The thought hadn’t occurred to me ever before. It hasn’t seriously occurred to me even now, but when you’re in the thick of a downward spiral that you’ve never experienced before that seems to have no bottom, you find yourself having some pretty scary thoughts. What if I can’t do this? That might be the scariest one of all.

I think the lesson of this relapse, now that I hope I can firmly say it is in my rear-view mirror, is that you can’t focus on the pain in any day or even any moment – you have to keep passing the open windows. A relapse hits and life is, indeed, suddenly very serious but you have to find the ability – be it from your faith, your loved ones, your optimism or your stubbornness we all have different ways – to know that it will end and you will feel better someday. Maybe not entirely better. Maybe some of the bad sticks around. But maybe it doesn’t too. You just have to have blind faith. There is literally no other option, lest you start to consider not passing the open windows and that’s just not an option for most of us. There has to be good to come. Even if you can’t see it, feel it or even imagine it.

The cool weather is making me very happy for other reasons too. I drive a convertible. Because of my extreme sensitivity to heat and humidity, I hardly ever drop the top in the summer time. Windows up, air conditioner blaring, that’s how I roll when it’s hot. Now that it’s deliciously cool (finally) I put the top down for my errands yesterday. First, I went to lunch with my mom. Took my nephew to Petco for some supplies for his kitties. And then I went to Target to get some essentials that I’d run out of during the long months of dizzy sickness when driving anywhere wasn’t even an option. It wasn’t until I crawled into bed last night that it hit me.

I did ALL of that in one day. For some of you, that probably doesn’t sound like all that much. To me it felt like a goddamn miracle. I know a lot of you understand that all too well. You’re the ones who I came to for encouragement, perspective, words of wisdom or just some much needed laughs. You’d been there before and you were wise to tell me that it wouldn’t always feel this way. I can’t lie. I didn’t really believe you at the time. I thought you were just being nice.

But I do believe now. We all have to keep passing the open windows. I’m going to remember this first relapse, probably first of many, as a concrete reminder that today is what we have. “Life is serious but art is fun!” Thanks to John Irving for helping me remember that.

My next Ocrevus infusion is on November 6. I’m desperately looking forward to it hoping that this is the one that I walk away from beginning to finally feel better for longer. If it’s not, there’s another one after that. And another one after that. And probably new and different drugs and new and different therapies…the point is, assuming that tomorrow will look a lot like today is never a good thing to think whether today was awesome or horrendous.

This relapse reminded me of that. And why I will continue to keep passing the open windows.

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.

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 problem with “and”

This basic thought has been bothering me all week but it’s such a fundamental “a-ha” moment for me, I feel compelled to record my discovery.

It’s so simple it’s kind of annoying. I’m talking about the simple fact that we live in an “and” society but thanks to multiple sclerosis I am quite firmly becoming an “or” girl. I used to be an And Girl. I was trained from a very young age to do this and that. Go here and there. See that person and this person. Have this job and this social life. I was taught to believe that I could have it all – everything I wanted – if only I worked hard enough and gave my best effort at everything I did.

It worked. I did pretty well for myself being an “and” girl. I worked hard and I had fun. I did chores and I socialized here, there and everywhere, with this person, that person and the other person. I loved my home and I loved exploring the world. The list of places I racked up under my “been there, done that” column got to be pretty impressive. I was living that dream and enjoying (most of) it.

That’s why it’s so hard for me now to realize, like I’ve been hit by a ton of proverbial bricks,that I am now quite literally being forced to become an “or” girl. A wicked combination of a later-in-life diagnosis of multiple sclerosis, and just freaking being later in life in general, combined to create this person I have become who must choose daily, even minute-by-minute this OR that. Very rarely both.

I’ve been living in the land of denial. Complaining to friends about how pathetic it is that I get tired so easily. My daily life takes so much out of me that sometimes I find myself only out of bed an hour or two before I’ve run plum out of spoons. But I still have the rest of a long day to get through. Spoonless. It happens more than I’d like to admit.

My best friend often tells me, “Don’t be so hard on yourself. You have a reason why you feel this way. You can’t help it.”

Yeah. That doesn’t really sit so well with me. I’ve never been a person who does very well with being told I could have this or that, do one thing or the other. I wanted both. I wanted more. And goddammit, I would be the person who proved everyone wrong by doing exactly that thing people told me I couldn’t (or shouldn’t) do. I took joy in it, really. I reveled in having it all, while being on my own, and living my very best life. I felt victorious.

Imagine how I would deal with my own body forcing me to say “uh-uh you can’t do that.” You are probably imagining the very struggle I find myself in each and every day.

I can shower OR get to work before noon. I can be effective at work OR I can put my health first. I can be successful in my career and thus pay my bills OR I can have fun. I can get up early OR have a late afternoon meeting. I can’t do both. Not both of any of those things. I can put on makeup OR I can sleep longer. Guess which things I choose?

My favorite illustration of this concept is my recent experience attempting to take a business trip (and failing). I realized I could shower OR have energy to walk through two airports and get myself to our corporate “campus.” I could do my presentation and put on a good show OR I could have dinner with colleagues later that evening. I could have meetings all day long trying to be my in-charge managing director self – OR I could walk without falling. There were so many ORs that I knew would be ANDs that it overwhelmed me.

Oh wait. There was one more. I could take the drug that helps me be focused and alert for a few hours OR I could be sane and able to function. Turns out, when I take Provigil too consecutively at my full dose it does bad things to my brain. Really bad things. Color me informed.

I am getting better at accepting this. I have two 9AM meetings next week on consecutive days because, well, it should be obvious by now that if there is a god, she pretty much hates me. I know that to make this happen, I will have to be in bed by 8PM or thereabouts the night before to make sure I can be out of the house by 7:15AM (have I mentioned that my body literally doesn’t work in the morning? I need very much extra time built in for pretty much everything).

There will be no showering. I can’t shower AND get to my meetings on time. Something has to give. I have to accept that I can do basically nothing else next week. There’s the OR busting up my plans to live a full life! I can make it to two 9AM meetings on two consecutive days and perform effectively AND have two days (or more) of recovery to get back to basic functionality.

Today I allowed myself to sleep in (pretty much like I always do on weekends) but I knew I had a few chores I wanted to accomplish over this weekend. Nothing too scary! My list of things to do included:

  • Go to Target for necessary supplies
  • Get cat food at Petco
  • Go to Giant Eagle- grocery store- for the things I can’t get at Target
  • Drop off dry cleaning
  • Do laundry (most of my favorite clothing, i.e. my pajamas are dirty)
  • Make myself something not terrible or unhealthy to eat

It’s a reasonable list. Not very taxing. But for me, here’s how my morning went:

Get distracted by overwhelming desire to purge my life of excess stuff. Find myself organizing excess makeup into a bag for giving away. Get even more distracted pulling things out of my closet for the great clothing give away I am planning in the coming weeks. Get through fall/winter dresses and shirts, think about doing spring/summer dresses too – and stop myself knowing I am already worn out.

Brush my teeth. Scoop litter on two different levels of the house. Put on “clothes” – meaning my weekend uniform of black yoga pants and black long sleeve t-shirt. Stumble down the stairs to take morning meds. Realize I left the dry cleaning upstairs – head back up the stairs to get it. Walk out the door realizing I’ve yet to eat actual food or have any coffee. Dammit.

Drop off dry cleaning. Head to Target and spend $300 on things I definitely needed and some I probably didn’t. Drive home. Sit in the driveway for 15 minutes posting on Instagram because my legs are too tired for unloading. Realize I forgot to go to the Petco or Giant Eagle. Tell myself tomorrow is another day and unload my bags from Target. Put away kitchen supplies, begin making food. Realize I cannot stand in front of the stove, so I sit on my kitchen step stool while cooking. Stand for five minutes. Sit for five minutes. Repeat.

I had every intention of doing that laundry. But guess what? Ain’t gonna happen. I’m currently resting after enjoying my delicious (and healthy) concoction that I’m calling “fancy girl hamburger helper*.” I paid my nephew $15 to go down to the basement to scoop my litter boxes. He probably would have done it for free but I like to help a kid out, ya know?

I stand at the kitchen sink long enough to do the dishes and feed the cats when I realize I need to sit down for awhile. I decide to write this blog post while I rest, gathering up the energy required to climb the stairs to my second floor to don my pajamas (please dear god let there be one more clean pair of pajama pants in my drawers). Once that is done, I will go back downstairs to try and watch something on TV before I climb the stairs again to collapse in bed once more. I will lie there, a few minutes, and wonder what things I didn’t do today I will find the energy to do tomorrow.

I will probably read a little before falling asleep, because that is my reward for getting through a basic day. I will sleep in late tomorrow (again) and try to choose between this OR that really basic stupid chore.

I watched a video online this morning where Montel Williams (who also has MS) talked about how he has basically dedicated his life to his health, 100%. He always eats right, he always exercises, he makes sure he is always well rested and he finds the right doctors to help him. He is 100% focused on optimizing his life in such a way that MS will not destroy his happiness. It’s a full time job, said Montel, if you want to live your best life.

I found myself wondering…Hmmmmm.

I guess Montel probably doesn’t have to get himself to work every day like I do. He probably removed the things from his life that got in the way of his 100% focus on his disease. I envy him for exactly one minute then suck up a big dose of reality telling myself that this is simply not possible for a Single Spoonie such as myself. It just isn’t. So I organized more clothes for giving away and went about my daily business (see above).

It’s hard not to resent it. It’s hard not to imagine this getting really old really fast. I want to be an “and” girl again. I really loved that girl. I really loved how she found time, energy and verve to do exactly everything she wanted to do. I love how she would do nothing as often as she wanted to and enjoy it, not resenting it or feeling badly about it. I now have to choose between things that are so basic it doesn’t seem fair that I should have to choose at all! It pisses me right the hell off.

Then I remember the wise words of yet another friend…”It can always be worse.”

Holy crap. It really, really could. It really, really will probably actually BE worse at some point. I better figure out how to stop resenting this shit. I better just suck it the hell up and start choosing between this OR that and getting on with it.

I’m not Montel Williams and I can’t dedicate my life to optimizing my health. So I should probably figure out another way around all of the “ands” in my life.

They just don’t work anymore. That’s all there is to it.

*Here’s how to make Fancy Girl Hamburger Helper…Get yourself a pound of grass fed ground beef from Aldi’s for $5. Saute that in a large skillet with a bit of olive oil. Boil water for some Barilla Plus Protein elbow macaroni (both high protein and high fiber, chick pea pasta). Once ground beef is browned, add in some chopped organic green onions, salt/pepper, a dash of my mom’s secret ingredient (celery seed…sorry, Mom). Add two cans of organic, no-sugar added tomato soup. Marry the pasta with the beef by adding one can of well-salted pasta water to your beef/tomato soup mixture…Simmer for a while. Viola. This is really delicious. Not even a little bit high-brow but so tasty I will have yummy dinner for most of the week AND not kill myself doing it. Winning? Sort of. It can always be worse.

Relationship status: It’s Complicated

Me, sitting on my back deck of the vacation house in St. John last year.

Of course, I’m talking about my relationship with the Sun. What the hell were you thinking?

Anyway. My complicated relationship with the Sun didn’t just begin with my MS diagnosis. It started a long time before that. The Sun makes for pretty days, it puts people in good moods, they smile more and generally become more pleasant versions of themselves.

Me? I find the Sun flat out oppressive. Maybe that should have given me my first clue that something was not-quite-right up in my Central Nervous System. But sunny days make me feel pressure.

I feel pressure to live up to their promise. I feel pressure to go outside. I don’t really like outside all that much. I know! You don’t have to tell me how weird that is or how nature is glorious or how you feel deep in your soul satisfaction when you commune with the earth…I get it. I really do. I just don’t feel the same way. Maybe because I’m never comfortable in nature. I’m extra wobbly on or in water. Hiking involves walking on uneven terrain and I don’t do so well on a perfectly smooth hardwood floor.

I hate to be hot. I mean what I say. I don’t just dislike it. I hate it.

This has made many people think I’m not only weird but also annoying for being vocal about my unpopular opinions about the weather, particularly sunny, warm and humid days. You know who you are! I may annoy you, I get that. You hate to be cold. Gray days depress you (I get that too…sort of, since I’ve recently discovered I also have an intolerance to extreme cold! I mean, thanks MS, you’re awfully thorough). You can’t imagine why a person of sound mind could possibly loath the delicious slightly damp hot air that pervades so many months of my life in Pittsburgh, PA, thanks global warming.

Let me explain how it feels to me when it’s hot, and even more, when it’s hot AND humid.

I feel like I’m slogging through wet cement. Lifting my limbs and making them move as limbs should takes herculean effort. I sweat more than the average bird and I feel like I am struggling to breathe. My hands and feet swell to abnormal proportions. My face gets splotchy and red. I want to join in your summery delightful fun, but my body is telling me if we try to do that we will surely perish. When it’s hot and humid my body goes into standby mode trying to conserve as much of its ability to stay upright as possible. You are having a ball! I’m trying to hold my shit together and not lay on the floor and just die.

OK. I tend to be dramatic but only a little bit.

It’s not just the heat that makes my relationship with the Sun complicated. It’s the bright, hopeful, sunshiny aura it brings along with it. It’s the promise of activity and fun! It’s the call to get out and be social, to suck up that delicious sunshiny life elixir, and generally behave like the best possible version of YOU that you can possibly be. You even look cuter! You wear fun sandals. You have a skip in your step.

You know what happens when I attempt to have a skip in my step? Well, I think you do. I skip myself right into being face down on the cement possibly bleeding from my head. I don’t feel cute on sunshiny days. I feel bloated and fat from the constant swelling in my extremities. I want to do things that make me happy – things like reading, sleeping, writing or even, yes, even working. But it’s nice out! I’M SUPPOSED TO BE OUTSIDE BEING HAPPY! I jump on Facebook and see no fewer than 99 different friends insisting I get outside and go for a walk, it’s so goddamn nice out!

Holy freaking pressure.

I had a super long, super active day yesterday at work and it was a lovely, if quite chilly, sunny day in Pittsburgh.

It was OK though. It was a really, really, good day yesterday! I had a first look at our new, larger office space a couple of blocks away from my current office. I managed to not only walk there, but I also managed to walk around the construction site, generally keeping all my limbs mostly under my control. If anyone noticed me walking funny on the way back to the old space, nobody said anything (yes, this eventful day involved visitors from the southern Home Office and from the giant French mothership so I had to perform these feats for an audience). We had to walk around our existing space and determine what would move and what would stay. By the end of the day, I was pretty much out of gas. But I had more to come.

I had told my favorite niece that I would visit with her before going home from work and help her decide what to pack for her upcoming European adventure. We were ordering Postmates take-out from one of our favorite local restaurants. There would be guacamole! There was talk of ice cream. And clothes! You guys know how I love clothes, especially when I’m choosing styling options for one of the most adorable young women I’ve ever seen.

I was kind of excited about the whole thing. I also knew it would be pushing myself too far. I’m sure my niece was fully expecting me to cancel. Let’s face it. If I make any plan with you to do something social and fun, there’s a 90% chance I’m going to bag out at the last minute because I’m too tired. That’s just the truth. Let alone on an evening after I’ve had a full day traipsing around downtown Pittsburgh trying to look like a normal. “Know your limits,” said someone who knows me really, really well.

But it was a sunny, happy day. It was an evening full of my favorite things and one of my very most favorite people. I was committed to making it happen if I had to crawl down the (extra very long) hallway to my niece’s apartment. I’m so glad I did! It was super fun. It might have been hard and it probably was too much after the day I had but I always put work first. I always say, “I can’t” to the fun stuff. I wanted to do the fun thing too. So, I did. I even got to take home some beautiful flowers and some left over guac.

I finally got home by 9:30PM. I barely had the energy to use a damn makeup wipe to take off the face I made myself put on in honor of my guests earlier that day. It was a struggle to get into my pajamas. I removed each piece of jewelry feeling like I was lifting weights. Feeding the cats and scooping the litter on two levels of my home took every ounce of energy I didn’t have left. I even did my favorite thing…I crawled up the steps to the second floor to get myself into bed.

And today, like a reliable curse, the sun shone like the giant ball of hope and optimism in a bright blue sky full of promise.

I had an interview scheduled at work. I had a day full of meetings. I tried to get my body to work like a body should, but I just couldn’t do it. I had to stay home. I had to sleep late (meaning I’d work late tonight, too, but that’s the way it goes). I didn’t have it in me to partake in the promise of this sunshiny, warm day full of happiness and promise. I had to look it in the eye and choose to go back to sleep. I rescheduled that interview. I did the meetings in my pajamas on the phone.

So, yeah. I’m working on my relationship with the sun.

I’m working on not feeling bad about myself for not loving it. I’m working on being OK with people thinking I’m no fun, sour or just plain lazy. I’m also working on figuring out how not to be sad about making the decision not to go on our yearly trip to St. John for spring break with my sister and the kids.

We’ve gone back to the same magnificent house for several years running. The picture above is from last year…it really is heaven on earth. As you would expect, St. John is chock full of sunny, warm days. It’s overwhelmingly beautiful.

I had to be honest with myself, though. It’s not as fun for me anymore. I did go last year and by all measures, I did pretty well. Considering. I needed help to get into the ocean (and then out again) but the kids were awesome about helping me. They all helped me carry things and didn’t ask me to lug heavy stuff on our daily trips to the various beaches on the island.

The house is located high up on a mountaintop and thus, has quite a few steps. I got super worn out from all the step climbing, the heat, the walking on sand and in water, the daily showering! Holy crap, I hadn’t been that consistently clean in a very long time. But a day at the beach must end in a shower lest you turn your bed into a sandbar.

It wasn’t like I didn’t have fun in St. John last year. I really had a ball enjoying the natural beauty I was surrounded by. But when I thought about doing it again this year, I had to admit to myself that my heart just wasn’t in it. I wasn’t yearning for ten days on the beaches of St. John. I don’t even know how to justify that sentence in my own head but it’s true.

I decided not to go this year. I felt good about that decision at the time but now that the trip is looming, naturally, I also feel a bit sad. I won’t see the sun set over Trunk Bay. I won’t eat peanut butter sandwiches packed for lunch or have coffee overlooking the beautiful Caribbean Sea or drink champagne with my sister on the beach at sunset, or read a good book on my back deck like I was doing in the picture above.

I will be here, at home, where the weather is changing back to spring with summertime looming in the distance like a threat. I will be trying to figure out how to not hate it, how to live in it, and how to not sleep my life away, how not to hate every minute when I eventually am forced to step outside. I will be trying to figure out what sort of vacation I’d find more relaxing and less stressful now that I have a different kind of life.

I will figure it out. I know I will. I will remind myself over and over again that I am still at the beginning of this MS journey. I’m still in the thick of the mess, the confusion and the adjustment. My body isn’t my friend right now but I have to believe it won’t always be this way. I will figure out how to be slow, quiet and cool – and not sad about it. I will stop beating myself up for feeling oppressed by the sun.

Want to know something really funny? I drive a convertible. Yes. The woman who hides from the sun has driven a convertible for the last ten years or so. There is nothing like driving with the top down on a sunny day. I call it “driking” when I drive through tree-lined roads near my house, looking at the leaves, enjoying the blue sky and the free feeling you get driving with the top down…

…with the air conditioning running full blast.

I was in the room where it happens

A montage of my most enjoyable NYC moments

Who doesn’t want to see Hamilton? I want to meet that person because I’ve been obsessed with the idea of seeing this show on Broadway the second I popped the soundtrack into the CD player in my car. I’ve been singing the songs, reading the books, educating myself on the historical backstory and did I mention singing the songs? Because I’ve been singing some songs! If you’ve had the opportunity to drive with me in my car any distance at all, you heard me sing those songs, too.

I’m especially good on Eliza’s parts, just saying.

A lot of people ask me how we got the tickets. My niece has seen Hamilton three times now (I know. Hello? Spoiled much? The kid is my hero.) After one of her first times, she went online and was one of the first 5,000 people to sign up for the Hamilton mailing list and as a result she got early email alerts when new blocks of tickets went on sale before the general public. One night, about a year ago, I was at my sister’s house having Sunday family dinner when Lani got one of those email alerts and we pounced. It was almost a year ago. The dates for the tickets seemed so far off! Like the show would never come.

I was early in my diagnosis, then. I had very little experience with life with MS. I also was early on in my treatment, and I think it’s safe to say, a lot more optimistic about what my life would be like a year into the future. I remember thinking to myself, “Well, by then my treatment will have kicked in! I’ll be in remission. I will be feeling better and more up for traveling. It will be awesome to have something amazing to look forward to after all of this time feeling like such ass.” So I told Lani to pounce. I was in.

Fast forward to a year later, January 2017 and Hamilton was looming.

I was super excited but also a more than a little bit worried. Those thoughts I had about feeling better and being in remission and all of that happy horse shit felt like the optimistic ramblings of a goddamn unicorn wrangler to me now. I was forced, again, to evaluate the year since my diagnosis and face the fact that things have gone pretty steadily downhill. There’s just no denying it.

I have trouble walking any farther than a block, maybe two. Depending on the day, I might even have trouble walking that far. I am perennially exhausted to the point where I can barely stay awake long enough to get myself to work during the week. You could say my social life has taken somewhat of a turn. I don’t go out much. I drive everywhere. I make strategic plans on the level of what I imagine CIA operatives do for major missions, but for me it’s just to get my through a regular day.

I calculate how to walk as few steps as possible and still somehow get where I need to go. I’ve limited my travel to only the most necessary trips (and with my job, that is a challenge). I have to plan every day around places where I will be faced with unavoidable steps, how close I will be to a bathroom (I pee a whole lot), where I will be too hot (or too cold), where I can have an easy place to sit down when my legs feel like they might give out (you’d be surprised how complicated this can be), not to mention whether or not there will be railings or something for me to hold on to when I feel unsteady. Surprisingly often, there just aren’t.

New York is one of my favorite places in the world. I used to dream about living there when I was younger and job opportunities came up every now and then to head to the big city. For one reason or another, I never took any of those jobs and I stayed in Pittsburgh. Home was always the right place for me but I got to travel to the city for work quite a bit and I fell in love with the energy of Manhattan.

But let’s be honest, here. Manhattan is a walking city. It’s the best way to have the New York experience. For those of us plagued by motion sickness, it can be the only way to have the New York experience. Cabs and Ubers are awesome, except for when a short ride makes you sick as a dog and ruins the whole day. So you walk, you explore, you find yourself in places you didn’t know you wanted to go but are (mostly) glad you did. You walk around and pretend to live in that coolest of cool cities. You soak it in.

I knew I wasn’t going to be able to do that on this trip. I considered renting or buying a transport chair because I was so worried about potentially not being able to walk far enough to get to Hamilton, but after thinking about this more and bringing it up in the infusion room for some opinions from people more experienced than me with this disease, a transport chair didn’t feel all that practical for the crowded, fast-paced streets of Manhattan. Instead, we found a hotel that was four blocks from Hamilton and two blocks from Cats. It wasn’t cheap – but I knew it was the best option for me to make sure I could see the shows. So we booked it.

I gave myself a pretty stern talking to.

Just get to the shows, I told myself. You don’t have to run around the city sight seeing or shopping. You’ve been to New York so many times! And god knows you don’t need to buy a single solitary thing. Just get to both shows and the trip is a win. Anything beyond plopping my ass in two theater seats in two different theaters would be gravy. My sister and my niece would be with me and we were driving to the city, so I wouldn’t have the airport exhaustion to deal with. They would have each other to have fun with during the days when I assumed I’d have to rest in order to be show ready. It could work. It could be fun. It would just be different.

And it was both fun AND different. Some summary thoughts…

  • I did make it to both shows. Walking to Hamilton on the first night was kind of a drag. My sister noted that I was moving my legs from my hips like my knees wouldn’t bend. I never realized that’s what Frankenlegs is a result of! But it is. Too bad knowing that doesn’t fix it.
  • I didn’t go out that much otherwise. On night one, my sister had to steal contraband take out from a NYC eatery where a server unceremoniously informed her they do not “do take out.” Well. She did take out for me. She smuggled me some amazing pork buns in her purse wrapped in cloth napkins. They were amazing! (Picture above…does not do them justice.) People should probably learn that telling my sister she can’t do something is pretty much a guarantee that she will do said thing. Lucky for me!
  • On day two I pretty much slept all day. Who knew sitting in a car for 6 hours made a girl so tired? But I was so tired, so I slept. When I woke up a few times, I thought about taking a short walk outside the hotel to get food. But the thing that sucks about unreliable legs and being alone is that your legs are, well, unreliable. I didn’t want to rely on the kindness of strangers! I didn’t think walking even a short distance alone was a good idea. That sucks because I really like to be alone. I like to explore alone. I had to admit it wasn’t a good idea – so I didn’t do it. But I did eat delicious NY bagels right from my room.
  • On night two, I rallied and went to dinner with my sister and Lani before Cats at an amazing restaurant called Upland. It was far enough away that I could easily Uber there and back to the show. Lani gets terrible motion sickness (much like me) so she and my sister walked to the restaurant and met me there. I had a short wait alone at the bar where I enjoyed eavesdropping on several super unsavory dates that made me really happy that I don’t do that sort of thing. It was an amazing meal.
  • I also Uber-ed to Cats, got there a little early and had a really nice usher show me directly to the handi-bathroom on the theater floor that also happened to be right next to our Orchestra seats. Winning!
  • Cats was…interesting. I love cats. I really do. I mean I really, really love actual felines AND musical theater! But…whoah. At several points during the performance, my sister and I got into crazy laughing fits like we used to get during weekly mass while in Catholic grade school. I cried more than once – but in a very good way. I’m not sorry I saw Cats. But guys. It’s a weird show.
  • Postmates is a MS-girl’s best friend. Particularly in NYC. God bless the Postmates for bringing me an amazing whole milk ricotta bagel sandwich from Black Seed on Friday morning before we left. I also got a dozen bagels which I am still eating, and damn! There is nothing like a NYC bagel.
  • If you have any chance, ever, any way possible, to go see Hamilton…GO. Go if you have to crawl to the theater on your hands and knees, go. It was that good. And also the perfect antidote to certain political realities that have made my soul sick as of late. It was an amazing display of talent, diversity and joy. I will go again if ever given the chance.

This weekend, post-trip, has been a blur of sleeping, sleeping and more sleeping – the usual MS recovery experience compounded by the fact that I have some kind of viral illness that hit me a few days before we left for New York (because of course I got sick right before this trip). I read somewhere that getting any ordinary sickness when you have MS is always worse than it would be if you didn’t have MS and I have to tell you, that is irrefutably true! I am hacking like a pack-a-day smoker, I have no voice at all and there’s no end in sight.

But it was worth it. I got to be in the room where it happened.

This trip gave me more things to think about. More things to ponder and consider and figure out related to how I’m going to live any kind of life at all while having this disease at the same time. Doing things like this force you to accept that there is no denying how far reaching the tentacles of multiple sclerosis reach into your life – so much deeper and further than you ever think they will when you first get diagnosed.

I am forced to admit that I am afraid to do things alone that I would have given no thought to pre-disease. I have to figure that part out because I really love to be alone. I love it a lot but I can’t always love it from my living room. I have to find a way to work that part out.

My sister reminded me on this trip that I never loved walking for miles and miles and miles. I used to get annoyed when she would expect me to spend the entire day walking and walking with no end in sight. I just didn’t think that was so much fun. I like to walk to a place – relax and enjoy that place, and then maybe walk back or maybe even hop a cab! I’m notoriously lazy. Always have been. I’m not even remotely ashamed of that.

It wasn’t that I couldn’t walk around with them all day, on this trip that bothered me. I wouldn’t have even wanted to do that. That is their thing, not mine. It was that I was too unsure to walk anywhere alone that really got to me. I have to figure that part out. Or figure out more cities to explore where I can mostly drive and only walk a little bit.

It’s funny how all it takes to make a girl want to do things she’s never wanted to do before is to have that girl realize that now, she couldn’t even if she wanted to.

There’s the rub.

I saw both shows. I had a great dinner. I laughed until I cried more than one time. I’m chalking this up as a major victory regardless of how much money I spent on Postmates deliveries.

 

Eff you, Charlotte Airport

Charlotte airport gets strike TWO.

I waited for 25 minutes for my wheels, until I gave up and walked. I got as far as the “assistance hub” where I saw two official looking guys in suits. They got a rather large piece of my mind. They took my info so that they could “make amends” that I have to tell you I won’t be holding my breath for.

I’m dosed, granted. I walked OK but I knew the Charlotte airport was too much walking and there was no reason to risk it. It makes me wonder…what do the people do who can’t walk even as far as I did? I mean, those people are seriously screwed. As I sat waiting, not one employee would catch my eye to tell me how much longer, probably because they knew I was screwed. Like I said, I could walk a few gates and not stumble, thanks to my magic Provigil legs, but what about old people? Or people who can’t even make it that far?

An American Airlines gate agent explained to me that because of the merger with USAirways, all of the handicapped assistance is in the process of being transitioned over to a private company for support. She said their own people are mainly losing their jobs. As a result, she explained, she had five people sitting more than an hour waiting for chairs or an electric cart for over an hour on the flight before mine. FIVE people who probably hated to ask for the help in the first place.

When people tell you that all you have to do to get help is ask or it, that is utter shite. Even when you ask for it, there’s only a 50/50 chance or less that you will actually get said help. The travel industry is failing the ADA big time.  The helpful but powerless gate agent told me to go to the Department of Transportation and file a formal complaint. She said it’s the only way to make any change.

This brings me around to politics…imagine that transition! But here’s the thing…for those people out there who firmly believe in a smaller, less intrusive federal government because they believe that private industry will do the right thing and make decisions that are in the best interests of the public – you’re high. Private industry will fuck the little guy every chance they get. Period. Without government, there is no Department of Transportation to complain to. There is no Americans with Disabilities Act. There is none of that shit.

Not to say anything of basic infrastructure we all rely on to live, but that is an entirely different rant. And I have a 4PM meeting to get to.