This is a happy post about fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Darkest Places (So Far)

In other words, when you get a diagnosis of multiple sclerosis that you weren’t expecting late-ish in life and let those words sink in, you understand viscerally that this is definitely not a good development. Things are about to change from top to bottom and every where in between. You pretty much get that from the very beginning (for me, early December 2015). You have to tell people who love you, first. Those are dark days indeed.

As you read and do some early research and find some voices you rely on for reliable information you feel yourself wanting to be hopeful, wanting all of those voices to be true. The voices of the Societies and Foundations and all the rest. This whole MS thing will be bad for a good long while, but it WILL get better. You will find your legs (bad choice of words or the perfect set of words. Depends on how you look at it). Just believe it. Hang in there. MS doesn’t have you!

The lazy writer in me wants to use the eye roll emoji in this post at this particular juncture. You get on that “MS doesn’t have me bus” and you listen to friends tell you stories about their friends (or friends of friends sister’s aunt twice removed) and she runs marathons with MS. Surely you can do that too! Chin up, buttercup. Better days are on the way.

And I do know there are better days on the way. Currently, better days are in speedy delivery mode as I choked down the most bitter giant 10 chalky tablets of prednisone ever made this evening after a command performance today with The Great Scott.

When TGS calls you and says be here at 1:40PM well…you put on your best black yoga pants/tank top combination. You have 75 identical versions of each so it’s a complex decision making process. You run your lint roller over your freshly laundered daily uniform because with four felines running around, and over, every surface of every item in my home that I’ve not left all that much in the last 6 or so weeks, you can’t be too careful. You don’t want TGS thinking you’re that cat lady (even though you are much much worse than that cat lady…he doesn’t need to know that). You pop an antivert and you get your growing behind off the couch to see the wizard.

And that is exactly what I did.

The Great One himself had two new students, Kyle and another Samir but not the same Samir from the last time. This Samir had some shiny and very voluminous black hair styled in a casual, not-over-done hipster doctor pompadour. It was really something. I’m a hair girl! I can’t help it. Kyle didn’t have a chance. I was covetous of Samir’s hair. Samir’s hair should have an Instagram account because MS’ers all over would follow him.

When Samir was doing my visual fields test and I had to stare at his fingertip and at his nose over and over again, I kept finding myself staring at his hair and he would say, “Down here, Maribeth” and I definitely blushed.

But I digress. After we went through the whole visual field song and dance again, twice, with each student, TGS talks to all of us as if we’re buddies. I think I’m officially one of them, now, based purely on the volume of times I’ve had to be in there in the last 6 months. He asked Kyle what we learn from the visual field test (the whole follow my finger, look at my nose routine). It was almost like TGS knew I was about to blurt out the answer and he look at me and silently shook his head ever so subtly, “Don’t.” (So I didn’t.)

Poor Kyle whiffed on both of his quiz questions. The other one was, “Can you tell me what other drugs beyond meclazine we sometimes use to manage vertigo caused by brain lesions Kyle?” I knew! I’ve been a vertigo researching fool these past 6 weeks or so. I KNOW THIS ONE TOO…I got the look again. I kept my mouth shut, again.

TGS is not pleased that his students appear to be dullards on this subject. Kyle actually stuttered. Poor Kyle.

“Sometimes we use benzos for this reason and we’re going to try that here to help Maribeth out. Also, Maribeth, this drug may kill two birds with one stone because I’m putting you on another course of high dose steroids starting today,” deadpanned The Most Great of all Scotts.

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

“Ugh.” I actually said this. “Isn’t there any other option? I mean MORE steroids? I’m kind of tired of the steroid effect TGS. I just am. I know that makes me a shallow asshole but there has to be another option.”

“Well, there’s plasma replacement blah-blahtity-blah but that is an in-patient experience, is not likely to work and is really a terrible idea so we can probably agree not to go there, can’t we? You have an aggressive disease. A lot more aggressive than we thought. You like being aggressive in treatment, right? We need to give you a chance. This should help you over this hump until your next Ocrevus infusion in early November. I’m still hopeful this drug is going to be right for you, Maribeth. But you do have me re-thinking the two month flush for patients like you. I may be changing my mind on the necessity of things getting this bad before they get better.”

He has a point. I’m nothing if not aggressive.

I do the walking tests. He continues to be concerned that I am back to pre-Tysabri levels of impairment (old symptoms have come back with a vengeance). Couple that with the vertigo that just won’t quit and he’s pretty sure I can cancel my appointment with the Hearing & Balance Center. (I’m kind of bummed. I was planning to go in costume since it’s kind of close to Halloween. I was going to dress up as a crazy old woman with a broken brain who’s lost her damn mind.) So, no Halloween fun for BethyBright. Boo.

I look down. I know I am beaten. He’s not called The Great Scott for nothing. I’ll take the fucking steroids.

Here’s the thing. I know some of you get this because you have been there. Hell. You might be there right now. You know what I mean. It’s a period of time so bad that weird shit starts to happen to you inside of your broken brain. You have thoughts that people like you just don’t usually have. You think to yourself, as you consider these random scary thoughts, “Huh. I don’t normally think things like this.” That’s another concerning relapse-associated “symptom” that the docs don’t talk much about.

You find yourself mildly afraid to leave the house. The outside world starts to represent potential injury and/or embarrassment or both, so you find yourself not wanting to go out there. At all. Ever. But staying in here? That’s another story entirely.

Staying in here is where it’s relatively safe (at least you can puke in private?). But staying in here sends a girl down some dark rabbit holes…

  • What did I do to deserve this? What am I being punished for? (I have some ideas, but I thought I was over all of that. Guess I’m not.)
  • Why do I live in this house that means I need help to do the most basic stuff? Why do I deserve to live in this happy place with so much freaking STUFF? I should give away all of this cursed stuff. We’re all under the same evil eye, my stuff and me. It should go, too. It’s cursed. I am cursed. We should all GO.
  • Why do I have so many damn cats? Why do they need so so much? I should never have been optimistic enough to get all of these needy, bitchy creatures. I should have known it would all go to shit! It usually does. Literally. Then I’ll need even MORE help to carry that shit out of the damn cursed house.
  • Why would anyone want to talk to me now? This utter nightmare is the ONLY thing I ever think about, let alone talk about. When I talk about it to my visitors, those kind enough to come to me for human contact, I find myself on my own damn nerves. There just isn’t a way to sugar coat any of this. I know if the tables were turned I’d leave your house feeling sadder than sad because we used to have so many other, more pleasant things to talk about. Now I have this. Only. This.
  • I’m alone. I rely on the graciousness of others. This is my reality. I am blessed (#blessed – few things irritate me more than #blessed I’m not entirely sure why but every time I see it, it sounds ironic to me). I have so many friends, family and buddies who help me in so many ways because they love me. Hell. They even help me by just giving me tiny little happy surprises! Like the card last week that I needed at just the right moment. But really how long can any of this last? People WILL get sick of me not getting better. It’s just inevitable. I’m so needy that there isn’t any realistic number of humans on the planet to fulfill all of my damn needs. It’s just not physically possible. I mean I am with me all of the time and I’m sick of me not getting better. What happens when I get worse? Or when I get MUCH worse…I can’t really think about that for very long or I go to darker places still.
  • Are there darker places than this? Oh I know there are. I have a feeling I might visit them before this is all over

I may have seriously entertained not taking the damn steroids. I definitely considered it, I may have come close to skipping my stop at the pharmacy. I’m so tired of all of the stupid side effects of fucking steroids! Why do I have to have a disease that makes me LOOK bad too. Why couldn’t I get a disease that makes you look scarily thin? Trust me. I know. These are idiotic, stupid pointedly indulgent obnoxious thoughts. I thought these idiotic thoughts the whole way home from seeing TGS.

Then I thought about how I had a virtual anxiety attack over leaving my house today. I have never had a true anxiety problem in my life. Other problems, sure, but not anxiety. And how doing basic chores has me so exhausted that I think my entire life is going to feel this way. For all time. Forever and ever until I just give up and stop, stop doing all the things let it all go to shit and just sleep. Because I am alone I am and will always be…This, my therapy loving friends is what my precious Cheryl would call “catastrophic thinking.”

Then it hit me. Out of the blue in full-on pedal to the medal on my way to Catastrophy USA, I finally got my head straight. Like BOOM.

The disease is talking right now. Not me. The disease is talking stupid because it wants to win. Its only reason to exist is to ruin me. It wants me to be depressed, full of newfound anxiety, falling apart at the seams. It wants me to hate on this body it wants to feed on because it makes the whole process so much easier, more easily digestible. Like tenderizing meat before you cook it. Those are NOT my thoughts.

When I feel better, my thoughts will be my thoughts again.

I took the damn first dose of bitter pills. They won’t be my last. I need to accept this and I have. I’ll eat sensibly and try not to go on an ice cream binge (prednisone needs no assistance in achieving maximum bloat) but I will have a couple of spoonfuls every now and then if it will give me some much needed joy.

It gets really dark in this world. Scary thoughts can kick you right in the gut and have you questioning your sanity. Your fundamental worth. Then you get to that point where you start to realize that maybe a nice gentle marinade would be ever so much more appealing on the meat than all of that beating it with a spiky metal mallet has been.

(I know at least one of my blog followers read that last paragraph and giggled thinking, “She said beat the meat! Hee Hee.” You know who you are!)

I’m going to marinade in some prednisone and some calming benzos and let this thing ride. Cliches are a thing because most of a time, they have more than a little nugget of truth inside.

And you know when they say it’s always the darkest.

Technical difficulty: LOW (or is it?)

A metaphor for life with MS.

So I thought today was a simple day. I had meetings all morning that were best done on the phone from home (whew). Then I happily noticed that it is indeed Tuesday, and based on my last post, my 3PM appointment on Tuesdays was even more critical than usual for it was with my precious, otherwise known as Cheryl, my therapist.

I woke up feeling dizzy again. I called Nurse Carol and begged for more drugs because more times than not this week, I get the dizzies then I get the sickies and that kind of puts a damper on leaving the house (which implies moving around which appears to be the thing that makes me even dizzier). I took my meds today since I knew there were more meds waiting for me at the pharmacy and I no longer needed to ration the glorious puke-killing pills. Another great reason to leave the house!

I was feeling shaky though so I decided to depend on my new friend Stan, my very sophisticated but simple black cane.

There were crews working outside at two houses across my street and I didn’t relish the idea of getting from my house to my porch to my car (a relatively low difficulty task) but there’s a rather longish stretch of grass to get to my car without a railing to hold on to – and, well. I wasn’t willing to face plant in front of two teams of remodeling men.

I used Stan. I got to my car. I turned on my car and realized I didn’t have my mobile phone (“Beth’s Iphone cannot be found” my car informed me)…Well dammit. I had to do it again – the low difficulty trek from my car TO my front door. My legs are now tired. Then it hit me…my phone was actually upstairs on my second floor. I had to climb the steps.

OK then! I can do this. I climb the steps on shaky legs, holding onto the railing to keep from falling, and grab my stupid phone. By now I’m running a little late for my very important date. I realize when I get to the front door (again) that Stan is looking at me from the passenger seat of my car. Ok then (again) it’s not that far! I can do this.

It was just about to the curve of stones that signify that I’m almost close enough to hold on to my actual car on one side and my actual house on the other side, when my legs kind of lost their will to be legs and I started to go down. Now, if you are a human who falls often (whether or not you are luckily enough to have MS) you know that there are good ways to fall and bad ways to fall. My friend Sandy throws her purse to the ground with great vigor as she’s going down. We’re not quite sure why (perchance to have both hands available for maximum impact support) but I’ve witnessed this with my own two eyes and it is nothing if not an impressive strategy. I have nothing in my hands but my keys and my iPhone. I panicked.

In no particular order the following thoughts raced through my broken brain;

  • omg I’m going to fall in front of not one but TWO teams of construction workers. IN MY FRONT YARD.
  • omg one of them might have to carry me to my porch like that one time that moving company guy told me not to worry when he attempted to pick me up – “I was gonna move couches all day, lady, I think I can handle you.” Um. Right. So not a compliment, dude but thanks anyway.
  • OMG I AM GOING TO END UP BACK IN THE HOSPITAL THIS CANNOT HAPPEN.
  • omg I am going to miss my appointment with my precious and this also CANNOT HAPPEN.

My lizard brain took over. My feet started some bizarre combination of random jump moves that may have resembled someone having a fit and trying to tap dance simultaneously. At the very same time, my arms begin to windmill because somehow, my obviously broken brain thinks this will help save me.

My arms and my legs are now moving in many directions all at the same time trying to keep my face from hitting that little strip of craggy concrete that is my driveway. From my mouth is coming a sound something akin to a squeak, or moan, or some animal noise that I am trying not to make too loudly so as not to attract the attention of the teams of construction workers.

I didn’t fall.

It was a goddamned straight up MS miracle. But I didn’t succeed in not attracting the attention of the construction workers at both houses who commenced to applaud. Had this been an actual Olympic sport, I’d probably  have seen them hold up cards giving me low scores for technical difficulty but all 10’s across the board for artistic interpretation of falling on your ass in your own front yard.

I get to my car, my heart is racing and my hands are shaking. Stan looks at me from the passenger seat and practically laughs. I text Cheryl to let her know I am on my way but I may be late because I had yet to pick up my drugs at the pharmacy and I may or may not have legs that will allow me to both get to the pharmacy AND TO  Cheryl’s office. I suggest we might have our session by phone.

Not a second goes by when I get a response: “Oh my…and what’s worse (not really) I’m in Paris, mon amis.”

Um. Yeah. She definitely told me about this. She planned this trip as a re-do of her birthday celebration that she was not well enough to enjoy when it had been her actual birthday. I’ve told you before that Cheryl, also by coincidence, has MS. I cannot tell you which milestone birthday she was celebrating because she’d probably fly home right now and kill me, but rest assured we had discussed this schedule change in our last session (you know the one? I cried for an hour straight).

I knew damn well about her big trip to Paris. We talked about my own trip to Paris not that many years ago. I completely forgot all of those details until I got her text.

I took my life in my hands for nothing. I walked like a hard core afternoon drunk into the pharmacy to get my drugs for the dizzies and the sickies. I just couldn’t wait for those drugs. Those drugs are currently vital to my days and nights. Then I had to conquer my fear and get myself back in my damn house taking the opposite path as pictured above without once again providing several construction crews with yet even more comedic material.

I take so much for granted. I just think…of course I can do that! But when I can’t? I really can’t. There is exactly zero gray area. The problem is, it’s also impossible to know when my legs are suddenly going to turn into useless, twitching lumps off uselessness. It kind of just happens. And here’s the kicker! Stan doesn’t really help. If he did, I would take him with me everywhere I go! But I did use him when I got back home again and I was concentrating so hard on how to walk with Stan in my hand, that I almost straight up tripped up my front steps. Thank goodness for that very sturdy (and quite pricey) wrought iron railing I had put in a few years ago.

I’m really ready for my next infusion, thankyouverymuch. Bethy Bright could use a break that doesn’t involve one of her legs or facial bones. And there. I probably did it again. I cursed myself by complaining, acting as if things just couldn’t get any worse. Believe me. I know they can and in a blink of an eye. I see your posts and comments about sudden symptoms that have you not able to walk at all! It can always, always get worse.

But here’s to hoping that I will still have it in me to find the humor in those situations when it does get worse. Cause I still have moves. As it turns out.

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.

Relapse: the Post Script

The thing is it doesn’t really matter how fed up I am. When you go through something like this last relapse, you tell yourself that it’s a minor set back. It’s just a hiccup. It can’t last forever! But then 6 weeks go by and you’re still feeling it and you start to think maybe it will indeed last forever.

There’s a lot of waiting involved when one has multiple sclerosis, particularly if one is young in their MS. Like me. I’m about 21 MS months old. I’m practically a MS baby but I’ve had my share of waiting in those 21 months.

First I waited to get approved for Tysabri. Then I got approved and I was waiting for the 6th or 7th infusion when I was told I’d feel better…and didn’t. Then I went through the 2-month flush before starting ocrevus, two months of feeling like such utter excrement, I could barely get myself out of bed. But once again, I got through it by telling myself that this amazing new drug would be the one that gets me back on the road to feeling more like myself again, but the thing is, it didn’t. I had about a month of feeling suddenly energetic and it felt awesome. Then, out of nowhere, I had a relapse two and a half months after my first Ocrevus infusion. I landed in the hospital for four days. Then I was waiting again, entirely focused on when I could get out and get back home so I could feel better. Then I got home, finally. But the feeling better part didn’t really happen.

I mean, it did. It did get better but when “better” just means occasionally throwing up as opposed to every time I ingested food and feeling like I’m drunk only 75% of the time versus 90% of the time but you could argue (and you would be correct) that I am better than I was. But better, better? Nah.

I’m back to waiting for the next great hope. That would be November. I find myself looking forward to November when I get my second full dose of Ocrevus hoping that maybe that will be the magical dose that helps me feel better once more…But the little voice in the back of my brain whispers, “Then again it might not…”

This disease requires a long game that I have never developed. To have this disease you have to be OK with your entire life being turned upside down over and over again, with more promises of “better” that come and go without the relief you were told would be coming.

So you focus on the next milepost. The next thing that might get your “overly active” disease under control for the first time since this whole crazy ride started so you can maybe not get back to “normal” (normal is probably never to be again) but maybe establish some new normal where this disease doesn’t affect every part of my every breath of my every second of every day. I have the experienced MS-er friends. They, who are much older in MS years than I, assure me that this is coming. I believe them! But sometimes it just makes me feel stupid for believing in fairy tales.

I did make it back to work last week. I made it to the office two days in a row. It felt awesome to finally leave my house but I’d be a liar if I didn’t admit that it was hard as hell. I practically had to force myself out the front door. I don’t look like myself. I forgot how to wear real clothes. Putting on makeup (which I usually enjoy) felt like putting on a disguise, someone impersonating the old me, not me at all.

I was so very happy to be out there, I really was, but I was also scared to death. What if I’d used all of my good hours in those days getting myself out of the house and into the office? What if I ran out of good hours before I’d make it home again? What if I had to use one of my handy portable puke bags but this time not in the privacy of my own home but in public among people who look to me for leadership? I’m supposed to be inspiring, the inspiring leader of the office! I was afraid for every minute of every hour I was outside of my home. Who have I become?

I’m back home now for a week of rest taking a long-ago scheduled week of vacation because I think I obviously need more rest. Ya know what gets tiring after a while? So…Much…Rest. Rest is wearing me out. Resting a faulty body that never feels rested no matter how many hours I’ve been able to stay unconscious, though I know it’s the best and only thing I can do, it feels anything but restful.

Nobody is pressuring me. Everyone, from my peers to my team to my colleagues and bosses is being as supporting as you would expect them to be in a situation like this. The one person who isn’t cooperating is probably me. I have higher expectations for myself. I’ve not allowed myself to believe that THIS life is my new life. This is just one of those waiting periods, another thing that I need to deal with, wait out or get beyond. I tell myself that I love my quieter, slower life but much like anything else I’ve had imposed on me, I might like it but I don’t really want it. I only like being quiet and slow when I’m doing it on my own terms. These are decidedly not my own terms. I’m not sure who’s terms I’m working with but MS and its terms are not acceptable to me.

I struggle with the whole phases of grief thing. I remember it well from when I went through this after my husband died almost 20 years ago. It used to frustrate the hell out of me to realize, as I was going through it, that those phases didn’t happen in a nice, planned, consecutive order. They happen all at once. All at the same time, sometimes completely out of order. When you think it’s over, those phases start happening again all willy nilly. Once you’ve experienced grief, you know that nothing about grief is at all tidy. You cannot control it. You just have to let it do its thing and wait.

People will tell you that you will be able to see the other side when you’re grieving but you really can’t. When it has moved on and you have a new life, it’s almost like a surprise. When did that happen? You really can’t put your finger on it. Once it happens, you wonder how you never noticed it as it took over. The feeling of seeing grief in your rear view mirror is more shocking than that. It’s like an old childhood friend who suddenly moves away. You’re sad because you’ve spent so much time together that it started to feel comfortable, but you guys were never really very good friends. You know you won’t miss your friend, grief, not as much as you thought you would, but then again, it will never really be gone. You will always feel it. Lingering on the edges of your life that is mostly happy it will be back there to remind you that it could all go away. Poof. Just like it did once before.

There is a silver lining to all of this. It’s a pretty obvious one, really. The silver lining is that I’ve done this before. I can do it again. I thought I’d never get any sort of normal life back after the one I had went POOF, but I did. I actually made a life that I really started to love. I just have to do it again!

We all have these transitions that we go through all through our lives where we are suddenly forced to acknowledge that having plans, being focused on anything but the moments, is really kind of a lie. “Nothing gold can stay.” Ponyboy Curtis taught me this when I was a pre-teen.* It might not be gold, anymore, but you learn to get great joy from silver and bronze. Sometimes you even get some platinum here and there. My slow, strange life might change or it might not. It might just one day feel like it should. Real. Until then, there’s always November.

Also, it’s not hot anymore. I can’t even believe I’m saying this but I almost turned my furnace on tonight! I thought better of it. But I almost did. It’s gorgeous sleeping weather. I better get to it.

 

  • “Nothing gold can stay” is an iconic line from one of my favorite childhood books, The Outsiders by S.E. Hinton who was referring to a poem by Robert Frost in 1923:

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day
Nothing gold can stay.

-Robert Frost