It was a weird (but amazing) day

I’ve been feeling crappy. I cannot lie. I’m super run down. I would sleep 24 hours a day if that were remotely practical. My walking has been meh, even with the use of my wonder drug. Apparently, even when taking an amazing new drug, you can still have bad walking days. Color me informed.

The season is changing right in front of my eyes and I’m torn about how I feel about this reality, hence my last post about my complicated relationship with the sun.

It makes me think of all of the seemingly easy, basic tasks that come with the change from Winter to Spring. Putting some things away, taking out others. Cleaning off the front porch and maybe planting some flowers. Fighting with the storm windows so I can get the screens to fall down into place. Putting the hose back on the rack outside for watering purposes. Changing the dreaded closet…shoes…coats. Changing out the curtains and slip covers, the blankets and quilts to put away.

All of the stuff. So very much stuff.

All of that stuff used to make me happy, or at least I thought it did. I had fun with clothes. I looked forward to getting dressed each day. I knew it was ludicrous to have seventeen different winter coats in every color of the rainbow but I thought it made getting dressed each day like an art project. I liked to change my color scheme in the house from winter to spring. I have slip covers for certain furniture for different seasons. I used to even change out my area rugs (I don’t do that anymore).

Lately, as I’ve gotten a much needed jolt into the real world by my life circumstances, my relationship to all of that stuff has changed right before my very eyes. I don’t know what hole I was trying to fill in myself, or what deep seated fears of poverty I was fighting. I don’t know when or how money somewhere along the line came to mean security and safety to me, above all other things.

I’m full of shit. I do no know when. It was after Chuck died. But it started before that. It definitely intensified afterwards, but it was in me all along. Hell, it was in both of us. Being married to Chuck was fun, not in small part, because we shared an obsession with cool stuff.

Chuck’s family had money. He liked having money. He lived like he had money even when he (and we) didn’t. When he didn’t like his job, he quit. I was aghast at this reality. I would have never considered quitting a job just because that job sucked. Jobs mostly sucked, I knew, from a lifetime of having them in order to have any money at all. For Chuck, though, not making money wasn’t the biggest fear in his life, like it was for me.

I made sure we were covered financially, no matter what or no matter how much I hated whatever job I was in at the moment, because somewhere in a life where I wasn’t overwhelmed with stuff, I became obsessed with having as much stuff as I could. It made me feel safe. There is probably an entire segment of years in my therapy with Cheryl where we will uncover the reason why I have always been made to feel secure and happy surrounded by stuff. But it’s just a simple fact. We didn’t take money from Chuck’s parents if it could be avoided. We took care of ourselves but we still spent way more money than he or I ever had.

I grew up having everything I needed but we didn’t really have money like Chuck’s family had. I was well cared for. I had things that most kids want. We had Christmas presents and clothes to wear and three new pairs of tennis shoes each spring (red, blue and white for dress) from Sears. My sister and I had matching outfits on holidays and most of the dolls and Barbie’s we wanted. But we were not rich. In fact, I’d say we were sometimes downright tight on money because my dad worked a blue collar job as part of a union. When he worked, he made lots of money, but when he didn’t work (and he didn’t work a lot) we had to scrimp.

I never liked the scrimping part. Maybe I was flawed from birth. Or maybe the feast or famine nature of my growing up years created in me a definite longing for more feast than a tolerance for famine. I wanted much more feast. When my parents couldn’t or wouldn’t give me money for the stuff I wanted, I had jobs for making money that remedied that situation. Well, not entirely, but I could fake it just as well as the next kid.

I went to high school with some rich kids, probably the first really “rich” people I’d ever met. These kids wore clothes with logos on them, brand name jeans and fancy leather shoes from fancy stores in Shadyside or Squirrel Hill. Some of them got cars on their 16th birthdays (some of them got really nice cars). I definitely learned to like things well out of my price range. I always wanted nice things. More things.

I am not proud of any of this but it’s just the truth.

Now, I find all of this stuff to be entirely stupid on one hand, and embarrassingly wasteful on the other hand. My job, and any money I make from it, has become a pretty functional thing to me. It means I can afford my medicine. I can get the care I need. When I need help with something I can usually afford to pay for said help. I take some really expensive drugs. I feel overwhelmed with gratitude that I can even consider doing that. Even when the drugs don’t work, or make me crazy, I’m still grateful.

I don’t need all of this stuff. I don’t really even want (most) of it. I realize, instantly, how privileged I am for being able to make such a statement. I feel like the stuff is in my way, sucking up my energy, wearing me out with its constant need to be moved around, managed or dealt with in some way.

I’ve been trying to pay it forward, you could say. It’s really rather practical. I’ve spent my life acquiring more shit than any human needs, now I want to give it away when somebody might like to have it, might need it or just because I think they’d look cute in something I used to love wearing but really don’t so much anymore.

I’m trying to donate things where I can. I definitely donate more money now than I ever have but if I know someone needs something that I have, but do not need, I want to pass it along. I don’t want to sell it.

This is complicated because it can go wrong really quickly. I don’t want to be seen as some benevolent Mother Theresa wannabe because I am clearly not even close. The vain, selfish, insecure and materialistic parts of me got me to this place. It’s nothing to be proud of. I want to be proud of my success without having to be obsessed with all of the stuff. So I’m working on that.

I never want to make someone feel like I’m giving them something because they are needy or somehow pathetic to me – that is never even close to the truth. It just makes me happy to be useful. Maybe it makes me feel less guilty for being such a mess of a person for so much of my life. I’m sure in many ways, it’s the most selfish act of all.

That won’t make me stop doing it. I like to find a way to help someone, give someone a happy surprise, or a much-needed break.

I was able to do that today for a stranger, and I honestly believe it’s proof that I get more out of these acts than the receivers ever do. Here are the basic facts of what happened to me today:

  • I saw a post on Facebook from someone who needed something for a really important reason and was more than willing to pay for it.
  • I had said thing in my house and never, ever use it. Like never. It was being wasted in my possession.
  • I messaged this person and offered her the thing she needed for free.
  • In the course of our messaging back and forth, I explain that I’m trying to get rid of stuff because of my recent diagnosis of MS and the fact that I have way more shit than any human ever needs.

This is where shit gets weird. She tells me she was diagnosed 13 years ago herself. Wait. WHAT?

She and I have basic human things in common like politics, values, ideas about how life should be. I tell her it would make me very happy to drop off the item to her house because I knew it would be harder for her to get out to pick it up herself (she has kids) and I was kind of looking for an excuse to get out of my house. So that is exactly what I did.

Talking to someone who has MS is like meeting a complete stranger who knows you better than your very best friend or even your mother.

It’s the most difficult thing to describe but it’s a basic knowing of what this is like that is literally impossible to communicate to another human who doesn’t have the disease. Hell, even The Great Scott and his team very clearly have trouble understanding what it’s like to have multiple sclerosis. When you try to describe it to someone who doesn’t have the disease you wind up feeling stupid because, well…everybody gets tired. Everyone has problems. Everyone has aches and pains. All of us are getting older and all of our lives are constantly getting harder. You just can’t describe it well enough to help anyone who doesn’t have a chronic disease even begin to fully understand what it’s like.

But, meet a complete stranger who has MS and it’s like…BOOM.

They just get it. They say things you instantly get and could have said yourself, things like, “Yeah, Provigil did nothing for the physical fatigue it just makes you hyper focused. It was invented for fighter pilots who had to stay alert for extra long missions. So you end up laying in bed physically finished, like you cannot move, but your brain is like POW POW POW.”

OH MY GOD YES! YOU GET ME! THIS IS WHAT’S HAPPENING TO ME HOLY SHIT YOU GET IT! OMG I AM SO RELIEVED!

This incredibly smart, incredibly strong complete stranger manages having this disease whilst taking care of three children on her own. She is basically a super hero to me. We chatted for a bit at her dining room table while her daughter quizzed us on state capitals (neither of us got very many right) and then chemical symbols (my new friend got ALL of those right since she worked in immunology research and has a degree – or many – in biology). I was blown away by this woman. And by this entire experience.

How did this even happen? I was doing something really easy for me to do. I was giving away something I didn’t need. It was selfish, really. But I got out of it so much more than inventory reduction.

I found a new friend with whom I could discuss my questions about the new drug and how it’s awfully like the old drug that she is currently on. She gave me a name for the obsessive practice I have of not running out of my meds (she called it creating “a medication buffer” and holy crap! Yes!) She talked of resources I wasn’t aware of. It was really easy to talk to this woman. Like we’ve known each other our entire lives.

But honestly? I was nice to have a real conversation with a real human that didn’t involve me typing. I guess I don’t realize how rare that is outside of my very close circle of friends, my family and people I work with. It was just beyond nice.

So while I’m on the record for not really believing in any true benevolent god-person who is pulling the strings for all of us from some far off place where people fly around in white robes with fluffy wings…I have to believe the universe is somehow working. Things like this just happen! There is all the proof you need.

 

Fifty is nifty…and exhausting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Musions on Infusion, episode (I forget)

I had an off-schedule infusion today because it was also my day to visit with The Great Scott, in the flesh. You see TGS when he can see you, not when you damn well feel like it, so off-schedule infusion it was!

It’s funny. The infusion room is not a place I am ever very enthusiastic about entering but in some ways it’s also the place where I learn the most about my disease and get the most useful information.

Going on an off day is like going to a party with a bunch of people you don’t know but who have known each other forever. One of the women in the room today has been getting infusions for 14 years. That kind of blew my mind. I can’t even remember which one this is for me, but it might be 12? I can’t be certain.

Another woman wore an anti-Donald Trump t-shirt and kept spewing news and stories from the Internet openly in the room as she read them from her phone. Here’s the thing. I am of like mind, and as you may have noticed if you know me at all, rather passionate about my anti-That Man feelings. But in the infusion room you cannot escape. It was clear there were three of us on the same page and one of us decidedly not on that page. It was more than a little bit awkward.

I learned today from my all-lady infusion group that menopause and MS are not friends. I told them I insisted to my gynecologist to put me back on the pill because I wasn’t prepared to deal with all of that at the same time as all of this. The ladies unanimously agreed that I made the right decision. Most of them are neck deep in the menopause (as I like to call it) and all having exacerbated symptoms as a result. I am not anywhere near ready to deal with that and THIS at the same time. I know I said that already but I felt like it deserved mentioning twice.

My month has been marked by a persistent viral illness and some pretty off the charts stress levels (the stress is caused by life events over which I have zero control and which are frankly not mine to write about openly so I choose not to, but trust me when I say it’s…a lot).

Illness and stress at the same time mean my usual degree of feeling like crap is multiplied by a factor of about a million and basic life tasks become super challenging. I’m dirtier than usual (showering is just not possible when I feel like this) and more tired than usual (I’m not even sure how that is possible, but somehow it is). Life hasn’t been all sunshine and roses this month, thank you very much, and I’m not signing up for menopause on top of that. Period. At least not willingly.

Nurse A was on her own today and hustling her little butt off. I feel badly for her. She tries so hard to remain positive and upbeat but every now and then you get a glimpse of what her life is like working for the hospital and it’s not easy. Then she has to deal with us on top of that. It makes making ads for a living feel kind of like having a lemonade stand.

One of my fellow infusees today was a very challenged walker. She arrived late, like most of them did today complaining about how shitty people drive when it rains in Pittsburgh (which they do! Man it was a hot mess this morning). She inched her way across the room, pushing her rollator in front of her. She dragged one hot pink Nike clad foot across the linoleum, taking teeny tiny steps forward with her good foot. It felt like she was never going to make it across that room and I couldn’t help but wonder why she didn’t take a chair closer to the door. But as I looked down and found myself in the same chair I always sit in (fourth chair in from the door) I realized that habits are hard to break and comfort comes packaged in familiarity. She wanted to be in her chair. I get that.

I had to stop mid-infusion to go have my sitting with The Great Scott.

Like I said, TGS waits for no woman so I got my line capped and headed across the office to the other side where the geniuses live. TGS had two students with him today observing me so we went over my case in intense detail. I learned things I probably learned before but was too muddled to pay attention or know what they meant. We looked at pictures of my brain for a very long time, different slices from different angles, all lit up with bright white spots, my own personal festivus of lesions. I asked TGS how many lesions I have. I don’t know why I wanted to know but when you have a disease marked by ambiguity sometimes any concrete information is welcome even if it’s quite meaningless.

TGS: “There’s a few, (1-2-3-4), there are more here, (7-11-14), and here are more in this view, (17-19-25). I’m going to say you have anywhere from 30 to 45 lesions in your brain. A few more on your cervical spine. They are the likely culprits for your walking difficulties.”

Me: “That sounds like a whole lot.”

TGS: “Well, it’s not a lot and it’s not a little. It’s pretty much average. But these days physical lesions in the MRI are less indicative of how you experience your disease. Research has shown this over time. The better indicator is how you are doing over time.”

Neuro Students: Enthusiastic head nodding, concerned faces, some muttering. Me thinking: “MORE TIME, JESUS CHRIST HELP ME.” But smiling pleasantly at all of them like a daft lunatic.

TGS: “Student #1, why do we prescribe Oxybutynin – Maribeth, I’m putting you on Oxybutynin.

Student #1 with very kind eyes: “Uh, something about smooth muscle, controlling the uh, the bladder control, uh…”

Haughty Student #2: “It works on the striated muscle in the blah-di-blah-di-blah blah blah blah…” I’m sure this was the right answer because TGS clucked approval at him.

But I got the impression that Student #1, with the kind eyes, was his preferred student since he had him do my vision field tests and some basic neuro tomfoolery that happens at every appointment. Student #1 was a super small Asian boy, very thin, jet black hair that stood perfectly on end uniformly all around. His eyes were very dark, definitely black and sparkly. He shook my hand when he walked in the door, his hands were very thin and cold. The other one? He was a beefy white dude with dead looking pale blue eyes and liver-looking lips with a half untucked plaid shirt and he did not shake my hand. I did not like him at all. He was way too superior.

TGS spoke directly to me today instead of into his mini-dictaphone. It was a pleasant change of pace. Here is what we (generally) agreed upon:

  • I’ve not yet experienced a real remission but he thinks it’s going to happen (guess what? it takes time!);
  • He thinks this drug isn’t helping me as much as he’d hoped. He said “Tysabri is what I consider my  best drug but it’s not working out that way for you. I think we want to put you on the new goo.” He means ocrelizumab, the not-yet-FDA-approved drug that everyone is buzzing about in the MS circles (who knew there were MS circles? Well, there are.);
  • The new drug should be approved at the end of March, so my last Tysabri infusion will be in March. Then I need to be flushed for two to three months. That means no DMTs for me for 60-90 days. This scares me a lot. I’m kind of dreading April through June as a result. TGS said we might do some low-dose steroids during that time, depending on “how bad you tank.” He actually SAID that. Sigh;
  • My other new drug (the one TGS quizzed the student about) is to help “calm” my over-active bladder. Super fun. I hope it helps because when I’m not sleeping I’m peeing and it’s getting rather old.
  • The best thing he said during those intense 20 minutes was this, while looking at my brain on the screen in the room, “Most people start to have brain shrinkage when they hit a certain age and they have MS. If I didn’t know anything about you or this case, I’d look at this brain and see a brain of a young healthy person. This is a young looking brain.”

That might be the best compliment anyone has ever given me.

So I shuffled back to the infusion room to finish off my fill-up and share the TGS’s opinions with the ladies, and maybe gloat a little about my awesome young brain.

They unanimously explain to me that the early years (YEARS) are the worst. Each of them had a good three or four years of utter hell before things leveled off and they found some kind of normal. Then for some of them, menopause shoved them back into utter hell and the whole leveling off thing has to happen again.

This scares me a bit. It seems fairly likely that by the time I “level off,” assuming I do, it should be right about time for my hormones to go wackadoodle. I feel like my MS timing is all off. Young looking brain or not.

But TGS remains optimistic on my behalf. He said to me, today, “I believe that once we find the drug that works for you all of this can be reversed. Or at least most of it. I am optimistic.”

He actually made eye contact when he said that part. I felt a mild shiver run down my spotty spine.

I wish he could write me a script for optimism. My insurance would probably reject me for that drug, too.

Hi, Rock Bottom? I’ve been waiting to meet you

Cheryl agreed with me yesterday.

This is worse than when Chuck died. It seems almost ludicrous to say that but this is actually, really a lot worse. I could pretend back then. I could act normal and look normal and make people believe I was normal. I was a pro. I had my trusty friends sex and alcohol and off-the-charts sociability to get me through the super rough spots.

I could pretend it all away. Until I couldn’t. But the simple truth of the matter is that by that then, after so many years of self deception, I had accidentally learned some things in spite of myself. And time passed. And it got better. Somehow it got better. It stopped feeling like I was going to die every minute of the day. And I started to be OK. More than OK. I was better. I was happy.

But this? I am failing. I try to pretend. But I inevitably fail. I just get too tired. My body just gives out. It won’t play along. I think I have it in check but then I run out of fake positive thinking and it all comes crashing down on me. I haven’t felt this hopeless in a very long time. I don’t even know what to do with this feeling. I tell myself, let yourself feel it. Don’t try to hide from it. It’s not going away. You have to go through it. But I don’t know how. I don’t know how to go through this.

I’m exhausted from trying to figure it out. I’m exhausted from the effort. I’m exhausted from trying to act like it’s all OK. I’m exhausted from admitting that nothing is OK. I’m exhausted from never, ever feeling normal. I’m exhausted from the sheer effort of doing small things. I’m exhausted by the energy that goes into walking the shortest of distances that really don’t get me anywhere. I’m exhausted from sadness over all of the things I want to do but might not be able to do anymore. I’m exhausted from talking about it. I’m exhausted by writing about it. I’m  exhausted by all of it.

I feel so completely alone but for the first time in a very long time that feeling feels really scary. I can’t even relate to my own best friends. I can’t fit in with people I love. I can’t figure out where this is going. Or how to manage life while it goes there. I want to think this is temporary but what if it isn’t? I want to get used to it, accept it and just move on. But it just keeps changing. I can’t accept what I can’t even begin to understand.

This is so fucking hard. I can’t pretend this away. Or socialize this away. Or drink or do any of those other things I used to do to make bad things go away. It never goes away. And I can’t figure out what to do with my life if this is what my life is going to be like. I can’t get my head around that.

Maybe that’s where blind faith comes in?

Maybe you have to tell yourself that it’s going to be OK even when you know very well that it might not be. Maybe that’s the only way to keep going when something like this happens. If you try to face it, it laughs in your face. If you try to ignore it, it knocks you on your ass. If you try to accept it, it changes into something else and you’re not quite sure what you were accepting in the first place.

Maybe faith is necessary when you run out of good reasons to believe that everything will be OK. I’ve always been bad at optimism. I’m even worse at hope. Maybe I have to get better at both. I can’t imagine life just being like this. I can’t. So maybe I just lie to myself and pretend that it isn’t. Maybe eventually it will get better. Maybe time will work some magic just like it did the last time. Maybe acceptance is bad in this case. Maybe acceptance is giving up.

Maybe that’s what faith is. Believing in the unbelievable. Now, that just sounds ludicrous too. I make fun of people who blindly believe things that are so openly ludicrous. I should probably stop doing that.

Post-trip spoon collecting has commenced 

Post-trip spoon collecting is in full effect. 

I’m working from bed. The kitties are snuggling and not fighting. The sound of their purrs is soothing to me. Clean sheets on my bed and a chill in the air (from the always cracked open bedroom window) are helping to make this a good re-entry. 

Sometimes I actually give myself a break. Sometimes it’s exactly what I need to recover. It’s funny how home feels like such a trap so much of the time, the last place I want to be because it’s the only place I can be. But at other times, like this, it transforms back into the paradise of safety and security that I created for myself in the year after Chuck died. This is one of those times. 

I forget to be grateful for it sometimes. Not today. Today I have gratitude oozing from every pore. 

That reminds me of something my mother used to say

My mother is frequently mentioned in my writing mainly because she is a font of material and one of my most favorite people in all of the world.

When my mother hears of something someone is planning to spend good money or time or effort on that she thinks is utterly absurd, she has a tendency to say, “I wouldn’t go across the STREET to…” fill in the blank with said absurdity. Examples that come to mind include: go see Lady Gaga, go see any event occurring in the general downtown area, or basically go anywhere to eat that isn’t her own dining room.

Lately, due to circumstances beyond my control, I’ve not been much of a party girl. I haven’t attended many events. I am usually asleep in bed by the time most people are out at swanky places doing swanky things. My mother’s phrase keeps coming into my mind. I might have said it myself when offered the opportunity to say…attend a party. Or, say, attend a party in another state that requires an airplane to get to. Or attend any function that requires me to leave my home after dark in an appropriately festive get up.

I might have said, “I wouldn’t go across the STREET to attend a party right now let alone attend a party in another state.” And yet. Off I go tomorrow to do just that!

What could possibly wrong?

I will visit our corporate office. I’ll make the rounds and try to limit how much I have to walk around the campus that is composed of three different buildings. Three. Different. Buildings. Connected by courtyards and walkways. So many potential surfaces to faceplant on! The mind reels considering the possibilities.

It took me a few days of angsting over what the hell to wear and how to make flat shoes make me feel…Not stumpy. Or what I can wear that requires less than zero thought or effort but still looks fun! And cool! And hip! Jesus.

I just finished packing a small suitcase with an entirely black wardrobe. I just need fewer things to think about over the next three days beyond what clothes to wear. I’ll be focusing on not collapsing or falling on my face. I’ll be trying to figure out how to cover an old lady face full of zits with festive holiday makeup. I’ll be thinking about whether or not there will be a chair handy when my body decides it’s had enough even though my face will be pretending with all of its strength to look as if I feel A-ok.

I’ll be trying to figure out what to say when people ask the dreaded question: “How are you?” I can almost guarantee that they really don’t want to know, even though they will think they really do.

All of this is a shitty way to feel for a girl who works for a company that is generous and thoughtful enough to include her entire team in a festive holiday office event. Honestly. That’s a goddamn amazing thing to do. My mother? She said, “Well, that’s a big deal. I mean, that’s really really nice.”

She didn’t say she wouldn’t go across the street to attend a fancy holiday party. Even she thought it sounded like fun.

I’m really going to try and pretend that I feel good. I’m going to try to hang and not let my body fail me. I’m going to pray for no freaky double vision or Provigil-mixed-with-alcohol mishaps (I probably can’t drink. Those are my options. Take the energy drug OR drink but not both.) So, looks like I’ll be doing all of this pretending stone cold sober.

Wish me luck. Who wants to take bets on how long it takes me to recover from this? Well. Let’s hope it’s before I have to board another plane to head to Charlotte for a meeting next Thursday.

Do you ever feel like the universe is trying to teach you a lesson the hard way? Right. Me either.

FOMO vs. Acceptance: The Grudge Match

Bitmoji Beth knows the struggle is real
Bitmoji Beth knows the struggle is real

I’m sure it’s not much of a surprise to anyone that I find myself in the grips of full on FOMO quite regularly. I’m in a constant state of evaluation where my inner monologue sounds a lot like this:

…If you don’t go, you will regret it…You really need to get out and see actual people. Just do it…You can do it! You aren’t that bad yet. You should try. If you don’t even try, you’re a quitter. You let the disease win! The disease can’t win…Don’t stop doing things you love…if you do that, it’s all down hill from there…You’re becoming a shut in. Get the hell out of the house! CALL SOMEONE. MAKE A PLAN. Take a shower…just go. If you don’t, it all goes downhill. Everything. You can’t just STOP. You have to GO…

And on and on, pretty much on repeat.

It got bad yesterday mainly because I got out of my pajamas at 1PM, hung out in my living room for a few hours (in my weekend uniform of yoga pants and black thermal shirt which is pretty much pajamas anyway) then around 5:30PM I decided to watch some stuff on my DVR, so it made the most sense to just put my jammies back on (so I did).

My mom called and I told her what my day consisted of and she said, “Sounds just like your father’s day.” Which was the single worst thing anyone could have said to me. I spent the rest of the night beating myself up for letting myself become a shut-in who only wears pajamas. It got ugly later that night lying in bed. Tears were involved. (PS. No, my mother didn’t intend to make me cry. She was making a joke at my dad’s expense, not mine.)

I was determined to leave the house today. So I set an alarm. I set an alarm for 11AM (I’m realistic, I have to give myself that) and I was out of the house by 1PM. Granted, I was in my weekend uniform again so it really barely counts as getting dressed, but I left the actual house which felt like a win. I had a few errands. Talked to some actual living humans. I did some Small Business Saturday shopping. I got the big idea to head to the shoe store I love in the city called Little’s (it’s a big store, but totally qualifies as a small business in my book). Little’s has a great selection of unusual brands. I often find comfy and practical yet not-orthopedic-looking shoes there. I wanted to walk a bit. I need to prove to myself I could.

I see people walking around everywhere. It looks so simple. They look effortless. They talk on their phones and push strollers, they jog and run in place at traffic lights. They walk carrying large purses and toting briefcases. They look happy.

I parked in the lot about a block away. I knew my legs were feeling bad to start with. When I have a bad leg day, one way that presents itself is that my legs feel stiff and heavy, as if they’re made of stone. It makes walking tough. I often trip over my own feet because they’re kind of dragging along because they feel so heavy. I talked myself through it. “Just keep going. Walk slow. Nobody cares if you’re walking funny, it only matters to you. Just go slow.” And I did just that.

People don’t like slow walkers on the sidewalk. I nearly got buzzed by a biker riding on the sidewalk probably because I was sort of taking a not-very-straight path down the street. Sometimes a bad leg day looks a lot like being drunk. Not one, but two, very busy women nearly mowed me down because I was clearly not walking fast enough for them (I knew this based on the very loud and heavy sighs I could hear as they blew past me). But the inner voice said, “Who cares? You will never see either of those very important women again and it doesn’t matter.”

I got two pair of stylish yet sensible shoes and began my short journey back to the car. I took a quick detour to Starbucks because I wanted coffee and because I thought the quick rest would help a bit and justify the tiny little bit of extra distance it took to get there. I got my coffee and began my stumble-walk back to my handicapped parking space.

I sat in the car and felt defeated (even as I stared down at the bag of cool shoes I just scored). I just don’t want to be this person! I just want to be normal. I want to be able to walk super short distances without having to talk myself through it the entire time. I don’t want to be a goddamn marathon runner! I just want to be able to walk from the parking lot to the store. From the parking garage to the office. From point A to point B. I’m not asking for miles (or even meters). I can’t imagine how I would ever go on another vacation where I had to walk around to sight see. I really want to sight see again. There’s a lot of the world I haven’t seen.

My brother had tickets to a concert tonight that I really wanted to go to. He asked me along and I had a brief moment where I told myself I could rally and it would be super fun. Shortly thereafter, I  knew had to be honest. I knew I would crap out probably before the opening act even got done. I knew I wouldn’t be able to stand for longer than ten minutes (this was a concert at a venue where you stand). I knew that I could probably limit my walking but I knew I wouldn’t have fun because I’d be listening to the inner monologue the whole time as it wondered when my legs would actually just give out. Then what? I texted my brother and told him that I really wanted to go – but I knew I wouldn’t be very much fun. He should take someone else.

I’m missing another event that’s happening this week (I had to RSVP and I got pretty sad when I clicked “Will not attend”) but I knew it was another one of those things. I would want to shower. I’d want to look nice. I’d want to socialize and mingle and drink champagne. These are all normal, fairly easy things to do. But not for me. At least not lately.  The simple truth is that the act of showering in and of itself wipes me out to such a degree that going out after doing it is simply not realistic.

I have other voices in my head, too. They’re from the perky MS bloggers. They’re out there…They’re every freaking where. They are fonts of positivity! I am definitely not one of them. They write about MS and talk about how rich and full their lives are. They use the infamous “I have MS – but MS doesn’t have me!” line that makes me want to stick an ice pick into my own temple. They write about their cool shoes and their happy lives with their happy little families and their husbands who pick up the slack on the chores and provide a handy arm to hold on to when their legs get tired. I hate them. I hate how much I hate them.

Then there are well-intended acquaintances. These are the ones who tell me about their friend-cousin-uncle-mother’s-fifth-cousin-once-removed-frat brother-neighbor-lady who also has MS. They are bikers-tri-athletes-aerobics instructors-yogis-competitive mall walkers-world travelers-speed walking-personal trainers! They are in better shape than my well-intended acquaintances (they tell me with a little self-conscious laugh). You’d never know that they have a disease. Don’t give up! You can do this, Beth.

And I walk away feeling even worse because a) I can do none of those things and b) now I’m failing at having MS too. Great.

Maybe tomorrow I will have a better leg day. Maybe some day I’ll be able to do normal things again like a normal girl. But what if I can’t? I can’t bear a life of feeling badly because I have to lay low and I have to be slow. I have to think long and hard about what I choose to do and how I choose to do it. Sometimes? It’s too much. It’s just easier and less stressful to just stay home. Just like my dad. And when I do that? Sometimes I will cry myself to sleep because I’m just not sure how to be OK with doing that so often these days. It’s fun when you choose to do it! It’s something else when you don’t.

I get so overwhelmed sometimes just trying to figure this out. One good day is followed by three bad ones and there’s literally no way to know what each day holds. I tell myself to have zero expectations. I tell myself not to be afraid. I tell myself that it doesn’t matter that I’m not graceful, that I walk funny and that I’m super slow. I tell myself that I’m still me – even if I don’t leave the house that much and even if nobody actually sees me.

Sometimes, I think that’s what this blog is about. It’s about my need to be seen. It’s about a fear that if I’m not out there, not doing, not seeing and not experiencing things…maybe I cease to exist. What then?

I know. Stop thinking like that. Stop imagining forever. Focus on today. This time though? I’m going to focus on tomorrow. Maybe tomorrow will be a better leg day.

Or maybe it won’t and I can just drive around and look at clouds and sing? Or something.

 

 

 

When you’re not quite bright, but not quite dark

I find myself in shades of grey more often than not, these days.

When I decided to call my blog bethybrightanddark.com a few friends told me it sounded more like a blog about bipolar disorder or mental health. While I don’t have bipolar disorder, you very well could say this actually is a blog about mental health. MY mental health. But it also meant more to me than just that. The name of this blog was inspired by how this disease makes me feel like there’s two of me. One that is regular fun, happy me. And one that is old, crippled, useless me.

It wasn’t the first time I’d felt these two me’s take up residence in my life.

I read a novel a very long time ago called “Lisa Bright and Dark,” by John Neufeld. The book was written in 1969 and is a young adult novel about a high school girl who is slowly losing her mind and nobody believes her (not her teachers, counselors or her parents). Nobody believed her but her friends, who decide to help her by performing their own version of crude high-school-girl group therapy that they create based on gut instincts and some scanning of encyclopedias and psychology books.

It’s a short book. Simply written – but when I read it in my early teens it pretty much hit me directly in the gut. I never thought I was losing my mind, per se, but I related to the idea of having two personas battling things out inside one fairly normal looking, relatively socially acceptable body where other folks would probably never guess it was happening at all.

I was in high school when I read “Lisa Bright and Dark” but I read it over and over again throughout the years even as I grew older. The picture above is of my copy – both covers have broken free and the pages are beginning to turn brown. I just read it again this past week. I may need to spring for a new copy.

I never knew it at the time, but much, much later in life I learned that some of this phenomena could probably be attributed to the clinical depression that I was diagnosed with in my twenties. But back then, I didn’t know anything about depression. Nobody I knew suffered from depression. That wasn’t a word we used in our very normal, regular family. I just knew that I felt like there were two of me. The bright girl who was bubbly, social, extroverted, outgoing and loved being at the center of it all, no matter what “it all” was.

And the dark girl.

She was nothing like the other one. She liked rainy, gray days. She preferred to be alone. A lot. She’d go days at a time wishing she didn’t have to leave the house or see any actual other people. She spent a lot of time chastising herself for not being more normal. She hated herself for being a fraud. She ripped herself apart from top to bottom on a fairly regular basis. She was never pretty enough, thin enough, smart enough, stylish enough or happy enough. She knew that she really wasn’t the Bethybright that everyone seemed to love.

Back then, I thought that when people found out what I really was inside, nobody would love me. Nobody would want to be around me. I would wind up old and alone and lonely – and I made myself believe that this outcome would be devastating. I always felt like both bright and dark lived inside of me, but they were in a battle. The bright, socially acceptable me would do practically anything to make sure the real me, the dark one, never got out. At least not in public.

A combination of therapy and medication, writing and time (a whole lot of time) helped me finally get to the point where I finally felt both of us could live in here at the same time and not hate ourselves. We felt OK.

We got through some majorly crappy life stuff, that is for sure. But we were OK. I kept on thinking of myself as Bethy Bright and Dark because I never wanted to forget that it is who I really am. I am both one and the other, all at the same time, and that was just the way it is. I was finally happy. It was finally OK.

Then I got MS.

I was thrust down the rabbit hole, once again, of trying to hide what I was, who I was, what was happening to me. I was freaked the hell out. What if not being graceful, even moderately athletic or even always basically “able,” wasn’t OK? What if I couldn’t do things? Even everyday things, like taking a shower, required major effort and planning. I knew I couldn’t wear my beloved cool high heels anymore, my fashion choices became severely limited as a result, and I found myself sometimes not even wearing makeup. I am a girl who loves makeup, people. I love it a lot.

What if I was not myself anymore once this disease got a hold of me and began ruining basic stuff like walking, talking, thinking, seeing, hell, even sleeping? I sometimes feel like there’s not one shred of my life that this disease hasn’t changed. I often don’t even recognize myself. Bethy Dark has been winning a lot lately. You may have noticed. The lack of makeup is a dead give away.

I go around and around on this every day, these days. I still don’t really know what this disease means. I know intellectually that I have a damaged central nervous system and that interferes with my ability to do things. But I kept hearing of this thing called “remission” and I have been waiting for the remission to happen to me. I just always feel shitty so I assumed I was always in a relapse. Finally last week, it hit me.

I was in the infusion room telling Nurse A about the various symptoms I’d been struggling with. I told her how I felt like I was tanking fast. I had days where walking even across the street was challenging. I had days where I couldn’t even rake leaves or carry groceries. I had days where I was seeing double and having extreme trouble concentrating.

I thought this stuff would stop happening once my drug kicked in. I thought that was what remission meant – no longer having symptoms. That’s why I thought Tysabri wasn’t working for me and why I convinced The Great Scott to consider every-other-month for my treatment (until the new and safer wonder drug is FDA approved in December). I just assumed it wasn’t working because I constantly had new symptoms. That had to mean I was in constant state of relapse.

Nurse A let me ramble a bit, my fellow infusees looking on, until I finally finished my rant and took a breath. And she said, “I don’t know how to tell you this. I don’t want to upset you or make you angry. But all of what you’re describing? That’s just what it’s like having MS. It never goes away.”

She explained to me that a relapse means you are experiencing new disease activity and things are getting much, much worse often times involving hospitalization or immobility or very severe reactions like blindness. Relapse usually requires IV steroids to stop the progress then back you go into “remission” where you get back to your new normal. You go back to a your new normal life where you randomly wake up with new and different MS-related weirdness – like my inability to walk or my random double vision. It only counts as a relapse if these symptoms last longer than 24 hours.

Otherwise, “That’s just your MS.”

Those words came back to me again today in an email from my neurologist’s office responding to my questions about recent labs. I wondered if there was anything in the labs that explained my recent issues – like the vision problems for example. And Carol, the office nurse, used those exact words. “Your labs are relatively stable. That’s just your MS. Nothing to worry about.”

Nothing to worry about, indeed.

The truth is, since infusion I do feel better. I walked pretty well today. I stood on one foot for 10 whole seconds! Each foot! (Seriously guys, my standards are not very high.) I didn’t sleep all day today. I don’t hurt all over – just normal places where every almost-50-something person might hurt. I am planning on finding a way to attend my company holiday party in December in Atlanta because I should go and because I really, really want to go! I’m not even lying. I want to go. Today? I feel like maybe I can. Last week, I was convinced it was impossible.

But tomorrow might be different. And the day after that too. The truth is, all of this is “just my MS.” THIS IS THE WAY MY LIFE IS NOW. I think for the first time since my diagnosis almost a year ago I am finally starting to accept that this is just my life. It’s my new normal. Maybe it’s time I stopped fighting it so hard. Maybe it’s time I just figure out how not to let it ruin me (not all of me, anyway).

I could be entirely full of shit and this Bethy Bright-ish thinking pattern might be completely different tomorrow. But that’s what this blog is really for: To remind me that it’s not every day that is darker than dark. Some are just gray. And I’ve always liked the gray days the best.

Maybe just gray is OK.

(Post Script: Technically, I guess I really did wind up old and alone…but I’m nowhere near lonely and this life, however challenging right now, is full-to-over-flowing with so much love. I wish I could tell the 16 year old me.)

But, really, exactly how far is 100 meters?

The Great Scott (TGS for short, aka my neurologist) likes to ask me about my timed walks. He says taking timed walks is a diagnostic tool for him to help decide how I’m really doing beyond the general crappy feeling I have day-to-day. I’m supposed to take a walk. Preferably outside or in a “normal” situation (i.e. not on a tread mill or on some other device where you can hold on). Preferably several times a week.

I cannot lie. As much as I completely understand why this would be a very handy diagnostic tool, my time or energy for taking these timed walks is really not something to crow about. I’m lucky I make it from my parking garage to my office carrying my laptop on most days. Other days I can push it a little further, some days I might take a longer walk to lunch than others but generally speaking I don’t walk for fun. Walking sucks. Walking is hard for me. Walking is usually a precursor to falling down, and I have to tell you, I haven’t had a black eye in a good long time and I’m kind of hoping to keep it that way.

It always occurs to me, when I’m considering this whole idea of taking a “timed walk,” just what am I supposed to do when I crap out? If this diagnostic tool is meant to measure how far I can go until I tire or feel like I might lose control, how do I make it back to where I started? You might find me sitting on the corner of Brilliant and First Avenue some night just because I thought I could go a little farther but my body thought differently. This is not an appealing prospect to me.

The expanded disability status scale (or EDSS to us MS-ers) is a tool doctors use to determine how bad off you really are – that is my own definition, not the approved medically crafted definition. The more technical definition can be found here: https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss

Once you get above 4.5, the sole determination of your EDSS is walking. Some folks don’t like that, but that’s just the way the disability gods made it work so suck it up. I have literally no idea what TGS has muttered into his dictaphone-thingy about my current EDSS score, but based on the descriptions in the link above, I’m going to guess I am at about a 4 or 4.5. The challenge is, I do force myself to work a full day (whether or not that happens in my office or in my living room is not relevant to me). I do move around without aid – I do laundry, I do minor minor chores like changing my bed, grocery shopping – things like that. I do walk through airports sometimes and I generally make it. I’m just not entirely sure if I’m really at a 4 or 4.5 because that’s all I try to do or if I’m really at a 5 or 6 and should be considering some help.

The EDSS of 5.5 puts your disability at the level where “disability is severe enough to preclude full daily activities. Able to walk without aid or rest for 100m.” I’m beginning to fear that I’m probably a 5.5 in denial. So much so that I actually googled “how far is 100 meters?” today and once I realized how far it actually is, I realized that if I walked that far I would almost certainly need a rest at the other end. No doubt about it. It’s probably a little like my walk to my massage that one Saturday. I did it. But I needed to lay down on that table and rest for 90 minutes before I even thought about walking back home.

(If you, too, find yourself wondering how far 100 meters really is, I found this handy video quite useful https://www.youtube.com/watch?v=ew74X5z3Rgo In fact, I also found it kind of oddly entertaining.)

I feel like I’m grasping at straws. Anything to help me put some parameters around what is happening to me. I’d be a liar if I said I wasn’t really afraid that I’m getting worse. I feel things getting harder every day. Things I did just last year (like raking those damn leaves) are not possible for me barely a year later. I wonder if the difference is that now I KNOW what’s going on and therefore I am more sensitive to it and my negative mind tells me I can’t before I even try. But I call bullshit on that too because I went into that leaf raking full of possibility! I was optimistic and hopeful. I assumed I could do it. I didn’t assume I couldn’t. Then I couldn’t. Plain and simple.

Alas! There is no EDSS ranking for leaf raking and therefore that experience isn’t terribly reliable as a diagnostic tool. The Great Scott would frown at me (and quiet-talk at me sternly) about that one, I’m quite sure.

The other thing I can’t stop thinking about is that I skipped my last infusion. Maybe the Tysbri was really helping me but I just couldn’t tell because I didn’t know how much worse things could really get! I have an infusion coming up on Wednesday and I’m looking forward to it like a 6 year old on Christmas morning looking at a big old pile of presents. I’m looking forward to going to a room and having someone stick me with a needle, that’s how desperate I am to feel even a little bit better right now. I’m wishing on my lucky stars that I feel a bit better after the “golden juice” gets back into my bloodstream, like good old Nurse A likes to say. Maybe we pulled back prematurely? I’ll be emailing TGS about that, you can bet on it.

Honestly, I’m just not capable of not thinking about this stuff. I tell myself to stop. I tell myself not to read the articles that say the disability tends to move more quickly when MS is diagnosed later in life, but I read them anyway. I try not to fixate on exactly how far 100 meters is. How many meters is it to get to my office in the morning? Can we use THAT for the guide (because that is far easier for me to get my head around)?

It’s taken me almost four days to recoup after my last trip. Four. Days. It keeps getting longer every time. I don’t think I could walk 100 meters right now if my life depended on it or even if you told me I could personally change the results of the most recent presidential election if I did walk 101 meters. I would really, really want to! But I’m not sure I could. I might let liberal America down.

The bottom line is I needed to work from home today because I didn’t have even a small walk in me. I think that might count as “Disability severe enough to preclude full daily activities.” I don’t want to be a 5.5! I really don’t want it to happen. It feels like failure, that 5.5.

Maybe that’s why I avoid the timed walk. In addition to being afraid of being stranded somewhere and not being able to make it back to where I started from, maybe I’m afraid that I don’t have 100 meters in me and I don’t want to admit that shit just now. Each and every day of life is full of so many meters!

So. Many. Meters.

I feel compelled to note that today is the 19th anniversary of my husband’s death. Every year at this time (not just at this time, but especially at this time) I remember him for the joy and sheer silliness he brought to my life. He was kind of the epitome of the words “happy-go-lucky.” Not much brought him down.

I also remember what I wrote about him at the time. He seemed like a simple guy on the surface but he understood subtle things. He understood that I was a super independent, very self-sufficient woman who disliked asking for help. I liked to do things myself. I didn’t want to need anybody. I liked to be the one helping not the help-ee.

But he always knew that I was afraid to drive in the snow. He’d come pick me up at work when the roads were snow covered, without me having to ask, because he knew I wouldn’t ask and he liked to take care of me. “But what about my stupid car stuck in the lot? How will I get to work in the morning?” I’d ask him. And he’d smile his crooked smile and say, “I’ll take you, squid-lid. Stop bitching.”

He used to say he wished I “needed” him more than I did. Again, my life is full of more irony right now than I often care to acknowledge.

Also, I have no earthly idea why my husband’s pet name for me was “squid-lid.” No idea what-so-ever.

Chuck and Beth, 1994.
Chuck and Beth, 1994.

Sometimes it gets very real up in here

I have been telling myself to stay in the moment and not think too far ahead so constantly that it’s almost funny how much work it is, this whole staying in the moment thing. The moments are hard. One day, a mere 24 hours, is full of so many moments! Some of those moments are good. Some of them are awful. Some of them are just plain old ordinary moments.

The last few days were both awesome and horrible all at the same time. I let myself knit those many moments together into something that freaked me out a bit. I really try hard not to do it, guys. I really, really do. I don’t write about this to beg for encouragement or uplifting words – you’ve all been amazing at helping me keep on the bright side when the days look dark. It’s just that sometimes, even the words don’t help. Sometimes I get frustrated by the mere fact that I can’t muster enough optimism because I should be able to do that, goddammit, I have so much to be thankful for! But some days all I can think to myself is, “Degenerative…no cure…this will only get worse. Face it.”

An overnight work trip on election day nearly did me in this time. It was the normal stuff. A dinner date with new clients, followed by a 6 hour meeting to kick off our new relationship and get the work started. The debacle that was the presidential election kept me awake throughout the night so I guess I didn’t get my minimum of 8 solid hours. I probably got more like 4 hours of sleep when all was said and done.

I held it together. I felt in the moment. I felt like I was in my zone. I was doing what I do well and it felt good. But throughout the day I could feel myself going downhill. Every time I got up to use the rest room (kind of a walk from our meeting area), I could feel my legs not wanting to move. I did some Franken-walking through new client HQ hoping in my heart that nobody would notice. I tried to ignore it and life went on. I sat when I needed to sit. I got up and moved around when that was what my body needed. Things were going pretty well. I was happy I didn’t have to walk more than I had to but when I did, I told myself it felt worse than it looked and maybe nobody cared anyway.

Later in the day I was talking one-on-one with my new client, the senior client, about budget and legal stuff and details I needed to get in her head so we could talk about them later. As I was looking at her, I noticed that I was seeing two of her. I was seeing double. I tried to ignore it, and kept up with my spiel of things I needed to get on the table, and I believe I did that but the simple fact was that I was talking to two of her at the same time and it was hard to know where to focus. I cannot tell a lie. It shook me up.

When we left the office and headed to the airport, I was pretty much done. Fresh out of spoons. I knew I’d probably have no spoons for days after this trip, but I had to finish up some things. Regroup with the team. Talk next steps, decide on some details before we all went off to our various airline gates. I think that went ok? I mean, when I asked later, the people I was traveling with told me they had no idea I was in the shape I was in. That made me feel both better and worse at the same time! But off I went to my gate, headed to security telling myself that it might have sucked but it was almost over and I’d almost made it.

One of my best traits is that I am an excellent faker. I guess it’s kind of funny to admit here in public and all but when I don’t want to do what I have to do, when I need to show respect when I have none to give, when I have to play along even when that’s the last thing I want to do – I can usually pull that off. I think it might come with the territory of being an account guy in an advertising agency. You learn early on that you play the game or you fail.

The events of the day left me with the realization that even when I could pull it off to the degree that others were fooled into thinking nothing at all was wrong with me, my body was going to find a way to make me pay. The new normal means faking it results in pushing myself physically to the point where my eyeballs stop working properly (or my legs, or my knees or whatever it is on any given day) and my body sends me a clear message, “You will pay for this.”

I also did something I almost never do. I broke down in front of two co-workers while sitting in an airport restaurant gasping and sobbing while I panicked about what the hell was happening to me. Thank god my co-workers are so much more than your run-of-the-mill colleagues (thanks girls). It could have been a whole lot worse. But I was so far from being home and I was completely out of spoons! I was overwhelmed with thinking of all of the things I’d have to fake my way through in the coming months just to get this new account up and running; To keep things moving at work; To get our new office off the ground; To make sure my team has what they need to get the work up and moving; To keep my regular life moving in the direction that it needs to move. What even IS my regular life anymore? My spotted brain was swimming.

I pulled myself together. I made it to the gate. I sat in my seat on my American Airlines non-stop flight to Pittsburgh feeling like every muscle in my body was on fire. The four ibuprofen I took didn’t even take the edge off. I couldn’t see so well to read anything, so I just closed my eyes. I didn’t sleep – I was obsessed with wondering if I’d make it off the plane before I had to pee (again) because the damn seat belt sign was on again and we had already begun the longest ever descent. I couldn’t stop thinking to myself, “Traveling sucks when you don’t have a disease. Traveling sucks even more when you do.”

I got myself home safely even though my vision was a little wonky. I was grateful to the universe for arranging for me to come home to a house without cat pee anywhere where it wasn’t supposed to be (thank god, because I was quite literally on the edge by the time I walked in my door). I fell into bed knowing I had a 10AM conference call but I could still get some good hours in and maybe that would be enough to make me feel normal again.

It wasn’t.

There’s not enough sleep possible to make me feel normal again. I think I need to accept that there is no more normal. Until this thing falls into some kind of rhythm or pattern or routine, nothing will be normal anymore.

I was talking to a friend who also has MS and she said that she was diagnosed at 45 and had three or four really bad years before she felt like it evened out and she stopped feeling like the world was going to end every single day. That made me feel better (and worse…again) because I have to keep reminding myself that this has only been my first official year. I was diagnosed on December 1, 2015. Things started getting shitty about a year or 18 months prior to that. Maybe I’m two years in? Maybe I only have another year of two of this hell? Maybe?

Maybe I loved my life out loud once too many times (again). Maybe it was always going to get hard. Maybe hard is what life just IS. Maybe I’ll be spending a lot of time over the next few days sleeping in my happy place (shown above..the view from the best bed ever), trying to collect as many spoons as possible, so I have enough energy to face it all again. Maybe I’ll be able to fake it long enough to make it.

Maybe.