One time, quite a while back, I had my heart broken pretty badly. Correction, that one time in particular, I had my heart crushed to smithereens not by being left abruptly (which I was) but by the words uttered to me when I asked my then-boyfriend how he could just leave me for someone new after all we’d been through together.
The begging for an answer went on for weeks! I couldn’t stop myself beating myself up, beating him up even more, with incessant need to know why. “How could you?” I whimpered. “How could you leave me for her?” And then one day he said the fateful words I never needed to hear…
“She was just too good to pass up,” he said.
Wait a minute. I thought I was the one who was too good to pass up but apparently suddenly I’d taken a turn into pass-up-able territory without anyone ever clue-ing me in. I was mistaken. I wasn’t too good to pass up at all! SHE was. Well, shit.
The words don’t pack the same punch they had almost 20 years ago, of course, but they pop into my brain sometimes at the oddest moments to remind me that there are, indeed, some things one can never really forget but that doesn’t make those things right or true.
Sometimes the thing that jogs these words back into my mind is a particular song, that I happen to love, that sums up the flat-out flummoxed feeling I was left with once I was actually, suddenly left:
“Where do you go with your broken heart in tow What do you do with the left over you And how do you know when to let go Where does the good go, Where does the good go?”
That’s from the song by Tegan and Sara called “Where Does the Good Go” and if you’ve never heard it, check it out. It sounds sad, but for some reason, it always makes me feel happy when I hear it. Perhaps because it’s right in the sweet spot of my vocal range and I can really belt it out in the car when it pops up on shuffle?
Whatever the reason, it keeps popping up on shuffle again and again in these last few weeks and it’s starting to mean something different to me now.
It’s not so much about an age-old heart breaking memory to me anymore. It’s more about life now. My life. Your life. Life in general that is always changing, always knocking us on our collective asses only to surprise us with unexpected joy before it knocks us on our collective asses again, then back to joy and repeat. The stanza that speaks to me now is this one:
“It’s love that breaks the seal of always thinking you would be Real, happy and healthy, strong and calm Where does the good go, Where does the good go?”
I used to believe there was nothing I couldn’t do, nothing that could really ruin me. I knew that even when my heart was broken, I was strong, happy and calm. I was healthy. That thing we tend to take for granted while wishing to be thinner or prettier or stronger or more talented or able to run faster. Health is the thing I never questioned. I believed somewhere way down deep that nothing could break me.
Along the way, these past two years since my diagnosis with MS, I lost that fundamental belief. It threw me for a serious loop because if there is one thing that makes me who I am – not the way I look, what I do, where I’ve been, how much money I make, how successful I’ve been, the car I drive or even how many cats I have – it is my fundamental belief that nothing can break me.
That’s how I used to feel. That unrelenting optimism in my own heart protected me. I would always be happy, healthy, strong and calm, no matter who broke my heart or what might make me feel otherwise for a short period of time.
Lately, I’ve been haunted by the notion of concentric circles.
I guess it’s somewhat obvious but I see my life in a series of concentric circles that once were wide and varied and full of new and exciting colors, lately the circles have gotten smaller and smaller, more focused and built of fewer colors than I’m used to, a lot like my predominantly black wardrobe. I think this notion about life as a series of concentric circles began in 2015 right after my diagnosis when I was freaked the hell out but still not fully aware of what my new life would be like. As my health started to go downhill, the circles started to get smaller, but in tiny increments. Nothing too scary. Then with my first big relapse in mid-2017, the circles were suddenly so small, that sometimes they threaten to suffocate me.
And yet they don’t. I’m still here.
There’s always a time period, a date or line in my mental sand for when I am expecting to feel somehow better. Those dates come and go without feeling better and it gets the better of me. It makes me feel like the good up and went. It makes me wonder, in the great words of Tegan & Sara, “what do you do with the left over you.”
I’m going to try a few things with the left over me, and see if any of them stick…This is my honest attempt to kick myself in the ass and start focusing on the center of the circle – I think that might be where the good actually goes.
I’m in the center. The center of my circles is me.
So for this, the last day of 2017 looking ahead into a brand new set of 365 random days, I’ve made some commitments to myself. They’re not complicated:
I will try to remember that some pretty crappy shit has happened to me in this life so far and none of it has killed me yet. This disease is not likely to do it either (not even death by embarrassment).
I will stop judging myself and my abilities (or lack thereof) so harshly. It’s not the world that is ashamed of me, it’s ME that’s ashamed of me. I need to stop doing that. I walk funny. I stay in my house a lot. I wear pajamas a lot. I read a whole lot & go out a whole lot less. So what?
I need to give myself a break from all the judging.
I do need to try walking a little more. I do need to stop thinking of myself as no longer good for anything I used to be good for (I could make a list but some of those things would be pretty embarrassing so I won’t). I’m still good for a lot of things! The good hasn’t gone. It’s just gotten more inwardly focused and to be honest, closer to my center is not a terrible place to be.
In 2018, I will listen to more music, laugh with more friends (either physically or virtually), try harder to be nicer to myself, stress less about how hard it is and how funny it looks when I walk around…I will allow myself to just be instead of wishing for how I used to be. I will eat more ice cream. (I figured I should give myself one easy resolution just to be safe.)
I will be where the good goes, for me, on good days and bad days.
I wish all good things for you, too, dear readers. My wish for you on this new year’s eve is that you find your good, wrap your arms around it and never let it go.
Stanley is my cane. I dubbed him Stan upon looking upon him for the first time. I use his more formal name when I’m displeased with him. You see, I never use Stanley because he’s kind of frail and not very reliable. But when it arrived, this new more stable foot for Stanley, it changed all that. The new foot for Stan is so much better than the little one I used to have. It feels more stable and more like I will be less likely to kill myself using Stan, so I may use him more. I may actually stop stumbling around without support when there’s no handy friend, family, wall or grocery cart to hang on to. It also makes Stan able to stand on his own without me holding on to him (independence is important to me in a man). It’s a good thing in all ways. Well. In most ways, really.
Such a good thing got me to thinking. As you know, that’s never a good sign. According to my Precious Cheryl, therapist to the stars, I think way too much. Certain old ex-boyfriends might agree. When I get to thinking, there’s not a force in the universe that can get me to stop.
Let’s use an enormous hyperbolic cliche of a sentence starter, here, to describe what my new cane foot got me to thinking about: My descent into a brand new, much smaller life continues. With no end in sight.
I’m not sure how I feel about that. Sometimes I feel completely OK with it. Sometimes I look around my new smallish life and I think, “Well, the truth is, this isn’t half bad at all. I have a nice place to live, I have snuggly cats that I love, family & friends that are crazy awesome and more than enough of most things I need.” None of that can be categorized as anything near bad.
Other days, I look around my new smallish life and I think, “What the mother fuck has happened to me? How can I find any joy in this existence? How can I accept the fact that there is more that I can’t do than I can on most days? How can I become OK with the fact that there are more days than not that I am un-showered, wearing comfy clothes (again) and not a stitch of make up and I truly don’t give a fuck? How can I live a life that is so very antisocial? I will miss people. I will miss laughing and drinking and dressing up to go out. I will miss it all.”
It’s all very dramatic and complicated and lets just face it, not terribly healthy. For once, I have experienced a turn in this life that I have literally no idea how to deal with. That’s also not entirely true since I felt much the same way the day I was told Chuck was taken to the hospital after collapsing at work. We all know what happened after that. I didn’t know what to do with myself after all of that insanity either and I behaved astonishingly badly but somehow life went on and so did I. This experience is so much the same and so much different. It has completely boggled my mind, plain and simple.
I had my two year MS-versary on December 1 and it came and went without much fanfare. I had to actually look back in my journal to see what day it was that my actual diagnosis came and there it was. December 1, 2015. I remember the holidays that year being in a Solumedrol-induced haze. My first time on the ‘roids. How grateful I was earlier that week to hang out, in a hospital, with one of my oldest friends from high school who came with me to the three-day outpatient infusions. I remember laughing, like not a single minute had gone by since last we laughed, when in reality it was more than 25 (closer to 30) years since we’d done so for three days in a row. I remember how she ran around the hospital looking for Lifesavers when the Solumedrol gave me that nasty metal taste in my mouth, also for the very first time. They were butterscotch Lifesavers and they were perfect.
On Christmas Eve a few weeks later, I wore green shoes with kitten heels (Fluevog of course) with a simple, swingy black dress (the harbinger of uniforms to come) and bare legs. It was unseasonably warm in 2015 in December and I remember being grateful that I didn’t have to navigate through snow. I remember putting on makeup before heading out with my giant bags full of gifts and thinking how everything felt the same but also completely different.
I can’t remember last year much at all. I guess I’ll need to go back to ye good old journal to see how I was feeling on Christmas 2016 but I don’t remember feeling very festive. Or maybe I did and I’m just projecting my 2017 melancholy on to that holiday memory.
Lately, I find myself uncomfortable around other people. I find myself wanting to be normal and not coming close. I find myself wanting to enjoy myself and laugh and be with friends and family – and at the same time, I find myself a fish out of water in nearly every one of those situations. Grasping for the strength or will or whatever it is that will make me feel anything like any of these people I used to know so well and at the same time trying not to let anyone see me grasping at anything at all.
In my old life, I could enjoy myself in pretty much any group of people. I loved being around people, being social, doing my social thing. Don’t get me wrong…there were just as many times that I felt outright antisocial back then, too, but I had the uncanny ability to fake it. These days, though, I don’t feel like I could even fake faking it right now. I’ve tried it a couple of times so far this season – like for my office holiday lunch and gift exchange – where I had such a terrible day physically speaking, the pain so intense, that I could barely focus on acting festive.
I felt like a bitter, sad, broken woman sitting in the corning flashing her best fake smile around a room of happy, healthy, festive people. That smile of mine probably looked more like a grimace and I knew it. I could feel it. I kept at the act for most of the party until I sneaked out when I reached the point where I couldn’t even sit without feeling pain. It made me feel like a failure as I stumbled to my car, just across the street to the hotel where I’d valet parked just a couple of hours earlier.
I read a lot this year. Thirty-three books so far. That’s one helluva lot of books. It will probably be 35 or 36 before the year is actually over. I read so much because it keeps my mind busy and away from thoughts about what’s to come. I also read so much because I just love reading. I resent this disease for intruding on my favorite things and somehow making them bad to me now. Things like staying home, being cozy, reading books and writing. I did all of those thing before my diagnosis and they felt good. Now they feel like giving up.
I’m going to tell myself what I usually do at this point in a time of so much discontent and that is simply this: it can’t last forever. It will get better. Things will even out or they won’t and my new cane foot that feels more stable will give me the ability to get out of my house (and my head) even on a bad day so I can accept whatever I need to accept and not give up. A stable cane foot can make all the difference, is what I’m telling myself today. It’s a little thing, but maybe it will help. Maybe something will help. Maybe something will change. Maybe I will change. But for the better, this time.
It’s all so cliche! Major life changes after a cataclysmic diagnosis (this felt at the time and continues to feel cataclysmic though it should probably not feel as such. I mean, there are lots worse things). Events such as this, though, typically create melancholy that runs its course at its own speed until it peters out into some kind of begrudging positive thinking that feels more like lying than anything else. But it’s better than feeling angry all of the time so one tends to give in.
I used to think about how lucky I am that this disease hit me after I had such an amazing time in my earlier life. How this disease hit me after I’d traveled, did impulsive things, lived for decades as an unfettered adult without a care in the world because I had no idea what was to come and I just wanted to enjoy it. That time I took a year off work and just…painted. And sewed and wrote in my journal. Those trips I took with my friends to tropical places. Those trips alone to various other places. Paris and Florence and Denmark and London.
How lucky I am that I had so many drunken happy hours when I laughed with my friends until we peed. The wins (and losses) in my crazy career in advertising. The men, mostly boys, who I allowed into my life, sometimes only to break my heart, until I booted them out again when I started to yearn for solitude once again. Or they booted me out and I thought I’d die then I never did and things went back to normal again. I’ve lived. I’ve lived a lot.
I’m not sure I know how to live now. No! This is not me saying I don’t want to live (I promise you), it’s me saying I don’t know how to live.
I keep trying to figure out how and what will make this new life happy again. Simplify/get rid of unnecessary stuff (check). Change routines (check). Eliminate unnecessary obstacles, (mostly check). Get a uniform (done). Slow down (like I had a choice). Alter perspective (Um…working on it). Ask for help (check). Accept help (check). I’ve done all of the things! I’ve taken all of the advice. Even the advice I didn’t know to ask for.
We used to joke, my friends and I, when I would ghost every now and then and have a weekend or a day where I just caved up, did nothing, and luxuriated in my solitude. They would say, “You’re spending time with your favorite person, aren’t you?”
And I would chuckle. I sure was. And I didn’t even care who knew. It was occasional, after all, a much needed rest from trying to be the happiest, most free, most successful, most full-of-life person I knew. That shit was exhausting. Who wouldn’t need a break every now and then?
So now it’s a disease that’s making my life exhausting. I have no idea why the reason for the exhaustion has such an impact on how I think about how to deal with the exhaustion. I have no idea why it’s so hard for me to accept that this disease has given me the rare opportunity to live the life I thought I wanted to live – the life with unlimited time for my favorite person.
Maybe I haven’t figured out how to allow this new, broken somewhat less shiny person become my favorite again. I’m so busy picking her apart inside and out, I never get the chance to luxuriate. I never get the chance to just be…me. The only way to change any of this is for me to somehow fall in love with this new version of myself, the way I did such a long time ago after having my heart utterly annihilated by the latest guy to let me down. It took time then. And it’s taking it’s good old time now! I’m just as impatient with the process now as I was then.
Everything is the same. Everything is different. Time is the only answer. Fa-la-la-la-la and all of that rot.
All of the work to get to the big day was worth it.
Our new office Open House was a great success. All of that pre-party angst was over and things fell into place nicely. The last minute construction issues that had been keeping me up at night, actually got completed. Almost every single thing was done. The office looked fantastic.
People came. Lots of people came! And it looked like they were having fun.
We had many guests in from the home office for the event since we were also having an agency-wide Town Hall meeting live from our new offices earlier in the day. I was the keynote speaker. I worked on my deck for days. I had such a great story to tell! It was a great celebration of everything we’ve done in our little office over the last almost 14 years and I was awash in the glow of finally, finally having the chance to talk about how we did it.
And it was possibly the worst presentation I’ve ever given in my life.
We had technical difficulties. The slides weren’t showing me my notes at all. I kept losing my train of thought. Then more technical difficulties made me lose it again. Even that was ok! People were super nice about it. It sucks to present to people via video conference in the first place let alone when your feed keeps going in and out and you’re not seeing your damn notes. I let myself off the hook (sort of). But I wasn’t happy. I moved on.
At the end of the Town Hall meeting, my boss made an announcement about my recent promotion while a slide on the screen showed a picture of Gal Gidot in Wonder Woman. I was beyond embarrassed. A little touched. And awash in irony.
Wonder Woman, indeed. I could barely stay on my feet. After the presentation debacle, I still had one more goal: Survive the party.
Surviving the party meant the following to me: Stay on my feet. Look like I was having fun. Walk and talk to folks around the office who were in visiting. Sneak out when it was technically over at 7PM without making a scene. Go home. Crash.
But when I woke up Thursday morning, I knew it was going to be one of those days (again). I was struggling. Pain. Unsteady legs. Lots of things going on probably brought on by stress, a long, long day ahead of me and a few too many long days behind me in the last week. There were a few other factors I cannot get into in a public forum but suffice to say I made things extra hard on myself. By accident. But still. I was a mess.
I had a plan. I was wearing something easy and comfortable (black of course) with flat shoes. I showered the day before so I didn’t have to exhaust myself getting clean right before the long day began. I had stacked the invitation list with people I’ve been dying to see but hadn’t seen in a long while because I’ve just not been up to socializing much.
This was one party I wouldn’t be able to cancel out of! I kind of had to be there.
My friends and co-workers took their turns holding me up, walking me to the bathroom, propping me up in handy corners and on available chairs. I didn’t eat much because I was so unsteady I couldn’t eat, socialize and stay vertical all at the same time. I had to pick two, like on the value menu at Panera.
When I have to be somewhere, doing something that looks totally normal to regular people for a perfectly normal amount of time, it’s not normal to me. My body goes into some kind of weird shut down mode. It starts to feel like that second picture above. My legs get super stiff and heavy. My knees ache and my back throbs. The pain tingling throughout my body is almost like a buzzing, like a constant backing track. My eyes go glassy and I start using the wrong words for the wrong thing in casual conversation.
My body doesn’t always feel like this, I promise you. Sometimes it’s merely a mild annoyance. Sometimes I just blow it off and take that day as a work from home day and move on. Sometimes they happen when you have life to live. Like last night. And you can’t avoid trying to play the game.
When this happens, you feel like a failure. You feel pathetic and sad. I mean, what it must have looked like! Me, being dragged around by my elbow, from spot to spot, looking like death warmed over and about to fall over.
People kept telling me how great I looked. I know I don’t look great. I look like a swollen, bloated Ursula the Sea Witch who’s been on steroids for a while and can’t stop eating and bloating like a giant water balloon that it takes parade handlers to keep on the ground. I know I do. I can see the pictures. I have actual mirrors in my home, people. I know what I see.
But someone not very close to me, said something very wise and surprising to me last night. She said…Only to you, Beth. You look sad, pathetic and busted up but ONLY TO YOU. Nobody else looks at you that way. It’s in your head. To the outside world, you’re killing this. Just accept that.
That made me think of cognitive restructuring and my last meeting with my precious therapist, Cheryl.
I was telling her how lately I can barely leave the house. I feel fat. Old. Ugly. I feel like a house frau who only wears yoga pants and baggy tank tops (because most of the time I am a house frau who only wears yoga pants and baggy tank tops). I looked in the mirror last week and thought to myself, “Well, my face being all distorted and puffy actually isn’t so bad because my wrinkles are barely visible! Winning!”
I was telling Cheryl that our decade long attempt to get me to deal with this failing in my sanity, was also failing miserably. My inner voices were louder than ever and even more hatefully aggressive. I had a new therapeutic request! A challenge if she chose to accept it, you might say.
I wanted to walk away from it. I don’t want to rationalize, know why or what for…I want it to be OVER. I don’t have time for it. It’s dumb. It’s wasteful and ungrateful and immature. It’s actually more than a little bit pathetic. How many REAL problems do I need to have, I asked Cheryl, before I can walk away from the imaginary ones? Who the hell cares what I LOOK LIKE? WHY DO I EVEN CARE???
Here’s the reality, folks.
My list of things that mattered in a day was quite long before this whole MS thing started. I had an official Persona. A thing to protect. I had to dress the part, act the part, and expertly play the part. My daily list of things to think about before getting out of bed and unleashing myself upon the world used to include things like:
what kind of mood am I in?
dress or jeans or something fun?
what kind of jewelry?
what shoes? high, higher or really high?
should I do elaborate make-up or keep it simple?
Who am I going to see today?
Am I going out after work?
how hot is it going to be today?
About 18 months ago, my list of things that matter in one day got strangely very short, very fast:
can I move?
am I in pain?
can I walk far enough to leave the house today?
can I get appropriate clothes on my body for going outside?
how hot is it outside?
(some things never change)
As Cheryl and I talked more about Public Beth, my well curated persona perfected over a course of 45 years or so, we started to realize something pretty obvious. I put the pressure on myself to create Public Beth. I thought she was what the world wanted. I thought being Public Beth was the path to happiness and eventual success. People seemed to love Public Beth and I fed off of that positive reinforcement like food from the gods. I really liked Public Beth. The mountains of selfies I used to post are all out there to prove it. I took serious pride in Public Beth.
I used to try really, really hard at all times. I was never not trying. Never. As I got older, I maybe pulled back on some things and simplified some routines, but I was a person who couldn’t not try. It is ingrained into who I am. I think I thought it was who I am, which in and of itself is a bit horrifying. But there you have it.
I felt like I had to adhere to these insane standards. I had to be the prettiest, the most stylish, the most successful and the most creative, the very most fun and delightful at all times. I had to be an “It” girl or I was nothing. Like I said, I did mellow out around 45 but I never really gave it up. I just changed the definition.
It’s too hard, now.
Now, I’m 50. I’m relatively newly diagnosed with a chronic degenerative disease. I often have little control over my limbs, so exercise is tough. I take drugs, many of them not just steroids, that make me bloat and gain weight. I am so tired all of the time that sometimes eating ice cream for dinner is less taxing than making a nice fresh kale salad.
Sometimes, at the end of the day I can’t lift my actual legs to take my pants off. It’s like they’re dead. When I get tired, it feels like lights in the rooms in the house of my body are shutting down one by one, room by room, until the house is totally dark and not a flicker of light can be seen. Maybe a tiny one in the attic. The one for my brain that can never turn completely off.
I know I don’t really look like Ursula the Sea Witch (much), but after years of telling myself horrible things every time I get a glimpse of myself in a plate glass window or god-forbid a photograph, it’s what I see. Sitting in the chair at the hair salon before the cape is on is my very own personal hell.
So after the 5000th discussion about this issue, Cheryl taught me techniques for literally re-wiring my brain. She told me all about cognitive restructuring. I’ve been using my techniques so diligently! I believe they will work. I want to put Public Beth away. Just be regular old me. And worry about important things. Like my health and being happy more of the time and stop being so hateful to my broken, imperfect, not very reliable body.
It made me think of the party again and how having a public persona is what most people do. It’s how you play the game of life. Small talk is bearable for public personas. You laugh and say witty things and your eyes dart around the room looking for the person you’re supposed to be talking to next before you actually walk away from the person you’re currently talking to. I saw so many people’s eyes doing this last evening it almost made me kind of sad. Even when not constantly looking at our phones, human beings still have such a hard time focusing on what they’re actually doing at any given time.
Public Beth isn’t compatible with the real me. I might try to look like her on rare occasions (not all that easy with this moon face but hell, I like a challenge). I still try to use her to protect me even now. But she fails because she quite literally doesn’t matter anymore. She has ceased to exist. I miss her. I can’t lie. But it was probably time for her to move on.
I have more important things to care about. The public clash of Public Beth and Real Beth made it feel like there were actually two of me at the office party. The one outside that was trying so very hard to hold it together, just until 7PM and the one inside, the real one, who needed two friends to walk her to her car, one at each elbow, because at the end of that night I was broken. Legs turned off. Done.
It was a really awesome party. I did enjoy it. But I also hated it. I think I have a bit more time to figure out what I really feel about things that are really important. I have my internal mantra for my program of cognitive restructuring to kill that hateful inner voice I have, but I may need to move on to the physical snap of the rubber band on my wrist.
I wasn’t supposed to refer to myself as Ursula the Sea Witch ever again. I was doing so well! Cognitive restructuring ain’t easy.
Here’s the thing: If you’ve had MS for years and you’ve gone through these early years of highs and lows and more lows and lower lows before and you’ve come out the other side with a more even keeled way of looking at the world and your disease, I envy you. I envy you a lot.
Being on this teeter-totter of symptoms, emotions, life crises, lost days, quasi-hopeful normal days, more frequent ultra shitty-shitty days is not fun. It’s hard to know how to feel from one moment to the next. Because I had a decent couple of days this week (now I am realizing that were very likely caused by my hit of that magical substance Solumedrol and not some fast-acting miracle of the new goo), I decided to try getting back to my old routine.
I went into the office three days in a row. I moved around more than I have been able to do in weeks. I showered and got dressed and went into work with clothes and makeup on. I felt weird, but OK, so I went with it.
I packed up most of my office in preparation for our office move later this week. I took a few walks down memory lane, looking at old pictures and remembering my 14 years so far with this company, fondly. I went home at night tired. I went back in the morning. I managed.
Here I am at the end of the week realizing something pretty obvious. I don’t feel that much better at all. I just fooled myself into thinking I did because I wanted to so badly.
I realized this as a result of two things that happened today that are undeniable evidence that I do, indeed, still have MS:
Evidence the first: I managed to get myself to my MRI appointment at 7:45AM this morning without incident. I had to get this appointment in before my next Ocrevus infusion as ordered by The Great Scott, and Saturday morning at the ass crack of dawn was my only option between now and my next infusion. I did fine. I listened to the banging and the humming and the thrumming of that horrible machine for half an hour and then I was done. I got myself a post-MRI souffle (my favorite early morning treat) and came home to climb back into bed. And then I proceeded to sleep until 4:30PM. I slept all damn day. I struggled to force myself awake because I knew I should. I dragged myself to Target to get a few things I needed but mostly just to get myself out of the house before I fell back to sleep again. Halfway through my trip to Target my legs started to do that thing they do – that shaky, heavy, dragging thing they do – and I was grateful to have the cart to hold on to. I had to rest in my driveway before unloading. I felt defeated.
Evidence the second: A little later, I was emptying the Litter Locker on the second floor because it had gotten too full and I needed to start a fresh bag. I began my descent down the steps carrying my big bag of kitty poo, my bottle of water (always in my hand) and my phone (also always in my hand) and stepped down the first step…and promptly fell on my ass. I fell backward. Back on to the hallway floor. I dropped the bag of kitty waste (thank the good lord above that the bag didn’t break). I dropped my phone and my water bottle and landed flat on my ass on the floor. I just had to sit there for a minute to collect myself. Then I grabbed the bag of kitty waste and proceed down the rest of the steps. I had to go back up for my water and my phone. I couldn’t manage all of those things at once. I did NOT get hurt. I have ample butt padding that I really just sat hard on the floor, not really a fall at all, more like an unexpected sit. I just hadn’t planned on sitting on the floor so hard in that particular spot at that particular time so I guess it surprised me.
I came down to the living room and realized, I don’t have any energy again. I slept all day. I did almost nothing. And I am about to go to bed again. I wanted to paint my nails. I don’t have the energy to paint my nails. Or watch television. Or do any other thing I was going to do on this Saturday night. I am going back to bed and I’ve barely been conscious a total of four hours so far today.
It gets demoralizing, all of the hoping and having the hopes dashed again. It gets exhausting pretending to feel OK when you don’t, and wanting really really badly to get back to your old routine and then realizing that your old routine wears you out to the point of falling flat on your butt out of nowhere sitting, stunned, on the floor beside a giant bag of poop.
I know there is hope. I know I’ve only had half of one dose of the new goo. I know all of it. I just felt good-ish for a couple of days and it made me really happy to feel like that. Going back again, so soon, is kind of crushing. Like I keep getting reminders that I do, indeed, still have MS as much as I would like to pretend I don’t. Nothing works that fast, nothing really works to eliminate existing symptoms at all, really. It’s only going to keep me from getting worse.
I wanted to feel better so badly!
And that’s why I envy you, mature-in-disease-years MS people. I envy your level headedness and your long view. I envy your earned ability to take all of this in stride because you’ve been dealing with it for so very long, it’s just normal to you now. I envy your ability to frankly accept that no good day means ALL good days (just like no bad day means ALL bad days). I envy your ability to manage all of this and not let it get you down. You accept it. It just is.
My old life is too close in the rear-view mirror for me to accept all of this just yet. Objects in mirror are indeed closer than they appear.
I still fight it. I resist it. I don’t want to believe that this is just how it’s going to be now. Forever. It’s just how it’s going to be. No highs will last and no lows will be always. The teeter-totter is life. There is no adjusting. There is only accepting your complete and total lack of control over just about any little thing.
Sometimes I can. Sometimes I look at this and think…Well, we all have to learn this lesson in life somehow. I just have a disease to force me into it. Other people will have to learn it too because all control is an illusion. There is no control. I learned this once before. I am learning it again. They (the normals) will have to learn it too, someday, it just might not be as obvious to them as it’s happening, like it is to me. This is the single lesson of life none of us can avoid.
Taking the high highs and the low lows in stride is the secret to life. It’s definitely the secret to successfully having multiple sclerosis.
I am looking forward to being a sage old MS’er some day. Where I will look fondly at newbies like me and think to myself, “Ah! I remember when this was so hard every day. Thank god those days are over.”
This basic thought has been bothering me all week but it’s such a fundamental “a-ha” moment for me, I feel compelled to record my discovery.
It’s so simple it’s kind of annoying. I’m talking about the simple fact that we live in an “and” society but thanks to multiple sclerosis I am quite firmly becoming an “or” girl. I used to be an And Girl. I was trained from a very young age to do this and that. Go here and there. See that person and this person. Have this job and this social life. I was taught to believe that I could have it all – everything I wanted – if only I worked hard enough and gave my best effort at everything I did.
It worked. I did pretty well for myself being an “and” girl. I worked hard and I had fun. I did chores and I socialized here, there and everywhere, with this person, that person and the other person. I loved my home and I loved exploring the world. The list of places I racked up under my “been there, done that” column got to be pretty impressive. I was living that dream and enjoying (most of) it.
That’s why it’s so hard for me now to realize, like I’ve been hit by a ton of proverbial bricks,that I am now quite literally being forced to become an “or” girl. A wicked combination of a later-in-life diagnosis of multiple sclerosis, and just freaking being later in life in general, combined to create this person I have become who must choose daily, even minute-by-minute this OR that. Very rarely both.
I’ve been living in the land of denial. Complaining to friends about how pathetic it is that I get tired so easily. My daily life takes so much out of me that sometimes I find myself only out of bed an hour or two before I’ve run plum out of spoons. But I still have the rest of a long day to get through. Spoonless. It happens more than I’d like to admit.
My best friend often tells me, “Don’t be so hard on yourself. You have a reason why you feel this way. You can’t help it.”
Yeah. That doesn’t really sit so well with me. I’ve never been a person who does very well with being told I could have this or that, do one thing or the other. I wanted both. I wanted more. And goddammit, I would be the person who proved everyone wrong by doing exactly that thing people told me I couldn’t (or shouldn’t) do. I took joy in it, really. I reveled in having it all, while being on my own, and living my very best life. I felt victorious.
Imagine how I would deal with my own body forcing me to say “uh-uh you can’t do that.” You are probably imagining the very struggle I find myself in each and every day.
I can shower OR get to work before noon. I can be effective at work OR I can put my health first. I can be successful in my career and thus pay my bills OR I can have fun. I can get up early OR have a late afternoon meeting. I can’t do both. Not both of any of those things. I can put on makeup OR I can sleep longer. Guess which things I choose?
My favorite illustration of this concept is my recent experience attempting to take a business trip (and failing). I realized I could shower OR have energy to walk through two airports and get myself to our corporate “campus.” I could do my presentation and put on a good show OR I could have dinner with colleagues later that evening. I could have meetings all day long trying to be my in-charge managing director self – OR I could walk without falling. There were so many ORs that I knew would be ANDs that it overwhelmed me.
Oh wait. There was one more. I could take the drug that helps me be focused and alert for a few hours OR I could be sane and able to function. Turns out, when I take Provigil too consecutively at my full dose it does bad things to my brain. Really bad things. Color me informed.
I am getting better at accepting this. I have two 9AM meetings next week on consecutive days because, well, it should be obvious by now that if there is a god, she pretty much hates me. I know that to make this happen, I will have to be in bed by 8PM or thereabouts the night before to make sure I can be out of the house by 7:15AM (have I mentioned that my body literally doesn’t work in the morning? I need very much extra time built in for pretty much everything).
There will be no showering. I can’t shower AND get to my meetings on time. Something has to give. I have to accept that I can do basically nothing else next week. There’s the OR busting up my plans to live a full life! I can make it to two 9AM meetings on two consecutive days and perform effectively AND have two days (or more) of recovery to get back to basic functionality.
Today I allowed myself to sleep in (pretty much like I always do on weekends) but I knew I had a few chores I wanted to accomplish over this weekend. Nothing too scary! My list of things to do included:
Go to Target for necessary supplies
Get cat food at Petco
Go to Giant Eagle- grocery store- for the things I can’t get at Target
Drop off dry cleaning
Do laundry (most of my favorite clothing, i.e. my pajamas are dirty)
Make myself something not terrible or unhealthy to eat
It’s a reasonable list. Not very taxing. But for me, here’s how my morning went:
Get distracted by overwhelming desire to purge my life of excess stuff. Find myself organizing excess makeup into a bag for giving away. Get even more distracted pulling things out of my closet for the great clothing give away I am planning in the coming weeks. Get through fall/winter dresses and shirts, think about doing spring/summer dresses too – and stop myself knowing I am already worn out.
Brush my teeth. Scoop litter on two different levels of the house. Put on “clothes” – meaning my weekend uniform of black yoga pants and black long sleeve t-shirt. Stumble down the stairs to take morning meds. Realize I left the dry cleaning upstairs – head back up the stairs to get it. Walk out the door realizing I’ve yet to eat actual food or have any coffee. Dammit.
Drop off dry cleaning. Head to Target and spend $300 on things I definitely needed and some I probably didn’t. Drive home. Sit in the driveway for 15 minutes posting on Instagram because my legs are too tired for unloading. Realize I forgot to go to the Petco or Giant Eagle. Tell myself tomorrow is another day and unload my bags from Target. Put away kitchen supplies, begin making food. Realize I cannot stand in front of the stove, so I sit on my kitchen step stool while cooking. Stand for five minutes. Sit for five minutes. Repeat.
I had every intention of doing that laundry. But guess what? Ain’t gonna happen. I’m currently resting after enjoying my delicious (and healthy) concoction that I’m calling “fancy girl hamburger helper*.” I paid my nephew $15 to go down to the basement to scoop my litter boxes. He probably would have done it for free but I like to help a kid out, ya know?
I stand at the kitchen sink long enough to do the dishes and feed the cats when I realize I need to sit down for awhile. I decide to write this blog post while I rest, gathering up the energy required to climb the stairs to my second floor to don my pajamas (please dear god let there be one more clean pair of pajama pants in my drawers). Once that is done, I will go back downstairs to try and watch something on TV before I climb the stairs again to collapse in bed once more. I will lie there, a few minutes, and wonder what things I didn’t do today I will find the energy to do tomorrow.
I will probably read a little before falling asleep, because that is my reward for getting through a basic day. I will sleep in late tomorrow (again) and try to choose between this OR that really basic stupid chore.
I watched a video online this morning where Montel Williams (who also has MS) talked about how he has basically dedicated his life to his health, 100%. He always eats right, he always exercises, he makes sure he is always well rested and he finds the right doctors to help him. He is 100% focused on optimizing his life in such a way that MS will not destroy his happiness. It’s a full time job, said Montel, if you want to live your best life.
I found myself wondering…Hmmmmm.
I guess Montel probably doesn’t have to get himself to work every day like I do. He probably removed the things from his life that got in the way of his 100% focus on his disease. I envy him for exactly one minute then suck up a big dose of reality telling myself that this is simply not possible for a Single Spoonie such as myself. It just isn’t. So I organized more clothes for giving away and went about my daily business (see above).
It’s hard not to resent it. It’s hard not to imagine this getting really old really fast. I want to be an “and” girl again. I really loved that girl. I really loved how she found time, energy and verve to do exactly everything she wanted to do. I love how she would do nothing as often as she wanted to and enjoy it, not resenting it or feeling badly about it. I now have to choose between things that are so basic it doesn’t seem fair that I should have to choose at all! It pisses me right the hell off.
Then I remember the wise words of yet another friend…”It can always be worse.”
Holy crap. It really, really could. It really, really will probably actually BE worse at some point. I better figure out how to stop resenting this shit. I better just suck it the hell up and start choosing between this OR that and getting on with it.
I’m not Montel Williams and I can’t dedicate my life to optimizing my health. So I should probably figure out another way around all of the “ands” in my life.
They just don’t work anymore. That’s all there is to it.
*Here’s how to make Fancy Girl Hamburger Helper…Get yourself a pound of grass fed ground beef from Aldi’s for $5. Saute that in a large skillet with a bit of olive oil. Boil water for some Barilla Plus Protein elbow macaroni (both high protein and high fiber, chick pea pasta). Once ground beef is browned, add in some chopped organic green onions, salt/pepper, a dash of my mom’s secret ingredient (celery seed…sorry, Mom). Add two cans of organic, no-sugar added tomato soup. Marry the pasta with the beef by adding one can of well-salted pasta water to your beef/tomato soup mixture…Simmer for a while. Viola. This is really delicious. Not even a little bit high-brow but so tasty I will have yummy dinner for most of the week AND not kill myself doing it. Winning? Sort of. It can always be worse.
I think it’s the weekends where I find myself with lots of time to do nothing, that I struggle. Sometimes it’s not that I have the time to do nothing, it’s that my body demands that I do nothing. Even though I try to embrace this reality, this physical need for rest, I can’t help but resent it. The best part of this is that I usually/used to/generally live for rest and doing nothing. The struggle against it is what I find so odd. And off putting.
Ideas come into my head randomly that I find myself wanting to blog about but I’m struggling to find the right story, or way to tell the story is probably more accurate. So I don’t write anything. It’s easy to write about the details of my newly diagnosed MS experience. The symptoms, the processes, the frustrations and the health system dysfunction because that shit practically writes itself. And there are so many bloggers out there writing about that very thing, sometimes I feel like just another voice in a sea of voices that really all sound the same.
It’s the other stuff I want to write about but find myself without the words.
Why do I feel so ugly? Why do I hate looking at myself? Why do I have a face full of zits like a 13-year-old-girl going through puberty (all while being a recently turned 50-year-old woman who is looking more wrinkled and more haggard by the minute)? Why do photos of myself make me cringe? Why do I avoid looking at my own reflection in random mirrors or plate glass windows? Why do I just want to hide? Do I feel ugly, so I look ugly? Is this a mind over matter kind of thing? Why can’t I even take a selfie that doesn’t make me want to throw up? I can usually find my beauty in a selfie – but only in a photo I take myself. I can usually feel OK just realizing that what I see in the mirror and what other people see in the actual world are not the same thing (my main motivation for ever taking a selfie at all! Well that and good make up.)…but lately I find myself hitting ‘delete.’ I even loathe the pics I take myself, these days.
Why do I find myself thinking about my single status for the first time in…years? I have lived alone, mainly alone, for almost 15 years. I genuinely love my life, my solitude and mostly my freedom to do exactly as I please. Why do I struggle to admit, (even to myself), how long it’s been since I’ve had sex? Or even kissed a boy? Why do I find myself afraid of growing old alone when I had formerly accepted, more like joyfully embraced, this fact almost ten years ago? Why do I suddenly feel like a freak for preferring my solitude? Why do I struggle to find value in my life lived alone when it was never a problem for me before?
What is even going on up in there, inside my skull? My broken brain shouldn’t be this broken. But it is. Obviously.
The only way I can explain any of it is to explore my old ways of dealing with stress. The Old Me Method you might call it. It was pretty simple (and not entirely rational or even reasonable, but I’ve never claimed to be entirely sane).
In times of extreme stress, or even just regular crappy days, I used to be able to fall back on “pretty”. Pretty was what I was. It was easy. I might not have been able to see it myself when I looked in a mirror but enough people convinced me of it over the course of my life on this planet that at one point I just decided to accept their words as true and ignore my own (apparently broken) eyes. Even when things were falling apart, I still had to be grateful because I was healthy. I was better than healthy: I was pretty. And being pretty meant pretty much everything (pun fully intended).
But I wasn’t thin, which was a struggle for me because my entire life I equated skinny with pretty. You couldn’t be one or the other you had to be both, in my opinion.
How could I be pretty if I wasn’t also thin? The answer was, I couldn’t. Or, worse, I would always be the “such a pretty face” girl. You have such a pretty face! I’ve heard that for as long as I can remember remembering. I loved hearing it even though I never really believed it. I thought people lied to me just to be nice.
My first boyfriend (when I was all of 13 years old) made fun of me for being fat after we broke up. Mutual friends, who were also 13-year-old boys, told me about it so I would stop openly pining over this kid who was obviously acting like a jerk.
My first big “real” love told me more than once that I would be “the prettiest girl on campus” if I lost 20 pounds (yeah, he might not remember saying that but I will never forget it). Many years later, my husband’s parents had many excellent reasons not to like me, in their minds. They thought I was a gold digger. They thought I was too NOT blonde. They knew I was definitely NOT thin enough to fit into their country club lifestyle and they never even attempted to hide thinking any of those things.
My first major relationship after my husband died ended with me being unceremoniously dumped for a skinny girl, who was older than me, and in my opinion not nearly as “pretty.” I had put myself on the line for this guy. I gave him my whole heart, judgement of other people be damned, and believe me, there were a lot of people judging me in those early widow days. Then he abruptly left me – while he was still living in my house rent-free, because he said he needed room. He was feeling like I wanted to “own” him. Whatever that meant. I thought it was because in his mind he found something better. In fact, he actually said these words to me himself, when I once directly asked him tearfully how he could betray me like this. He said, “She was just too good to pass up, I guess.”
The most recent “real” relationship I had was with a guy who told me over and over again that he knew I could be thinner, because he’d seen the pictures where I actually was thinner, and I was in total control over it. I just needed to eat less and work out more. Easy. What a fucking idiot. He told me it was my mother’s fault I was overweight. She solved everything with food, he said. He said these things to me over and over again over the course of three years or so that we were together while also clinging to me like a parasite, trying to change every little thing about me. All while claiming to be crazy “in love” with me. I find it mildly confusing that his current girlfriend of many years isn’t anywhere close to thin. She’s lovely, but she’s also quite normal person sized – kind of like me. Maybe he grew up? All I can say is, better her than me.
Oddly, the only relationship I have ever been in (in my entire life) where I felt beautiful and accepted just as I am, is the one that I wasn’t allowed to tell anyone about.
He was not only much younger than me (way too much by all decent standards), he was also black which would have been frowned upon in my moderately racist Italian family, no way around that. But he wasn’t just black, he was BLACK. An ebony skinned Jamaican boy almost 10 years younger than me and totally inappropriate for me – not for any of these reasons. But because I got involved with him in the process of trying to get him un-involved with another one of my married friends. I inserted myself into a situation with the intent of making something right. It didn’t work, and somehow, we started spending time together. Lots of time. Quality time.
Don’t even ask me how that happened, it was really just twisted. But happen it did. I’m still being ostracized for it by those friends from my old married life. I honestly didn’t care. I knew what I was doing. I was happy. I felt beautiful and accepted for the first time in my life. It was worth being labeled a bad friend! I knew this relationship wouldn’t last (for very many practical reasons) and I was also OK with that. I didn’t really want a long-term relationship. I was mostly happy alone. But I loved it while it lasted and there’s no way around that one. How messed up is that?
What’s stranger to me is why can’t I stop thinking about things I thought I had dealt with years and years ago. I was happy! None of this mattered to me anymore. I worked my way through it. I never tried to run away from it. I faced all of it. I worked through it! Even Cheryl will tell you so. Cheryl has been with me through it all, guiding my work, making sure I wasn’t just playing. I was figuring it out. I won client of the year! More than once. It’s one of the things I am proudest of in my life (even though it’s not really a real thing, and I’m quite sure she says that to all of her patients – she can’t fool me). But I’m still quite proud.
Then suddenly out of nowhere, I get diagnosed with a chronic disease, my whole life changes in the course of a year, and all of the sudden all of this old, messed up shit starts flooding back…along with this hideous acne. My face is so messed up right now that my skin actually hurts.
It’s like I’m the Old Me again (in the bad ways, not the good young and fashionable Old Me) but without the freedom or the advantages Old Me had for disguising myself (those would be things like drinking too much, lots of sex, random dangerous behavior, really expensive and impractical shoes). I didn’t fear being alone because I knew I sincerely preferred it that way. But the truth was that if I decided that I wanted to be with someone, if I ever felt a little like “company,” I could do that any time I wanted. Hell, my cell phone was chock full of willing participants who I could summon with a quick text message (“you home?”) whenever I wanted to not be alone for a few hours at least…then I’d be blissfully happy to see him go.
I don’t feel that way anymore. I actually deleted most of those contacts from my phone. That’s some final shit right there when you hit “delete.”
Being with a man can’t make me feel better anymore. Nothing can make me feel better except for me getting my head right. No movie or TV show or series of amazing books can make me better. No amount of alone time can do it either.
I am going to get through this (alone) just like I’ve gotten through every other thing. Why does this scare me so much, now? And why won’t these fucking zits go away?
Post Script:I almost didn’t post this entry. I felt too…fragile maybe? Vulnerable, definitely. My family reads this blog, some of my young family members. Maybe I’d like to avoid busting up the images in their heads of mostly wholesome Crazy Aunt Beth. People I work with read this blog and that’s even scarier. My entire career, hell the entire advertising agency industry, is based on your ability to project things like uber confidence, control and intelligence. It worried me to think what people would think, reading these things about me. I have to say, I’ve become a freaking expert over the years at mastering the art of the persona. It took effort and it was a full-time job. In some ways, it still is.
So, I decided to not “publicize” this post via social media where those people are likely to see it, click and read it immediately (places where I can’t easily control privacy settings). The reality is I write this blog for me. Part of me writes it in the hopes that I could help another newly diagnosed patient deal with this mess in a better, more informed way. Part of me writes it because I have always wanted to be a “real” writer. No, not even that actual bachelor’s degree I have in actual WRITING makes me feel like I have achieved enough with my writing to call myself a writer.
But mostly, I write this blog for me. I have zero idea why it helps me. I write in a journal every single day of my life and it has always been incredibly helpful to me. I still do it habitually. And it still helps. But knowing that actual people are reading my actual words, on this blog for some strange reason, helps me more. Could it be because I am a terrible narcissist? That might be part of it. It wouldn’t be the first time I’ve been accused of being such.
Another dimension of the phenomena made itself known to me recently, though, in a Facebook message from a friend who I really care about but don’t often see. It touched me so deeply – that someone I never see would not only think of me, but think of me as worthy of giving a very personal and special gift…it hit me like a ton of bricks. In my message reply to him I wrote, “You have no idea how much this means to me… Sometimes I feel like I’m disappearing.”
Or something like that. It hit me hard. I do feel like I’m disappearing. I feel like my edges are getting blurry and the things I believed to be right, true and reliable are just not. Call it growing up, call it a mid-life crisis – call it what you will.
But this blog helps me because it makes me feel visible, in some odd way. So, I am going to hit “post” on this really scary post. Luckily not many people will actually read it! I wish I knew how to get more people (not related to me) to read it. Maybe I should ask one of those digital marketing experts I’m surrounded by every day, about how to get more people to read my blog.
I’m creeping up on kind of a milestone birthday. In a few short weeks, I’m going to be celebrating my 50th birthday. Half a century! It doesn’t even seem possible but barring anything completely unforeseen, it will be happening on February 19.
I’m sure this is the time of life when most people start looking around them, re-evaluating their life decisions, career moves, relationships long ago and more recent, friendships, life choices – all of it. I’m no different. I’m doing the same thing but I have a few rather specific circumstances that are making my half century reflections slightly different than most.
The first circumstance, the less obvious one, is the fact that I became a widow at 30. Now, that in and of itself is life changing any way you look at it, but for me, it ushered in a decade of pure exploration and discovery that was at times overwhelmingly painful, sometimes fun, a little bit scary, more than a little bit exciting and ultimately exhausting until the unexpected happened: I was OK.
At a time in life when most of my friends were settling down, having kids and living the carpool life, I was living alone in a house I bought just for me. I was living my life with energy, excitement and more activity than I could sometimes manage. I was being actively creative, writing or painting most every day. My career had its stumbles (don’t they all) but I made them work for me and somehow I kept moving forward.
I didn’t re-marry like everyone thought I would. I had a few significant relationships but they weren’t what I would call keepers for lots of reasons. I obtained four rescue felines. I settled into things like silence, independence, solitude and lifelong friendships that in many ways saved my life. The journey that most people go on once their kids are grown; their marriages are no longer new (or simply no longer in some cases) and their careers have crested – I went on that journey in my thirties. I traveled alone. I had adventures. I was scared and I cried a bit, but I was also determined to come out of the experience knowing myself better, understanding myself more deeply and knowing myself more intimately.
I’m here to tell you that I did all of that. And then some!
I wrote about it in my journal as I lived it almost every single day. I found myself at 40 feeling like I knew things I would never had known if my life had taken a different path. In some ways, I saw my solitude as a gift. How many women have the time and luxury of spending their thirties in self-discovery instead of raising kids, (or husbands)? A tragedy gave me that freedom and I believed in some crazy way that Chuck, my husband, was guiding me through it all shaking his head at my more outlandish stunts, being my co-pilot when I made stupid decisions and did things that weren’t very safe, laughing along with me when I had fun and exploring the world through my eyes.
My forties, as a result, were pretty damn good. I’d done the work, I made the mistakes and I survived to tell the tale.
I found myself living my life without regrets and without much fear. I had the usual work stresses and crazy dramas, but I felt equipped to work my way through them using the tools I’d cultivated along the way. I felt pretty good about myself – in most ways. I still battled some stubborn demons that had their hooks in me pretty deep, but I had a good life. Around the age of 45, I started to notice some strange things going on with my body. But after exploring a lot of options with a lot of doctors, I was told I was healthy.
I believed whatever was happening to me physically could be conquered by eating better, exercising more (or at all) and giving up the obsession I had with my failing health. I felt lucky. I wanted to do more, things I’d been putting off as I explored the potential health issues. I told myself that now was the time.
I planned another solo trip – this time a trip of a lifetime! A long-time dream. I wanted to go to Italy.
I found the perfect tour for me – a woman who curated a trip for women who wanted to explore Tuscany like a local. I booked immediately! It was like this trip had been sent to me by fate and I knew it was going to be a dream come true. (You can find out more about the trip I went on by visiting www.findyourselfintuscany.com – go there. You won’t regret it.)
I did something I’d never done and booked my trip to Florence first class. I was going to do this trip right. I may have spoiled myself forever by making that decision but it definitely got my trip off on the right foot. I was amazed at how comfortable, stress-free and easy it was to fly first class. “Another reason to dislike rich people,” I remember thinking to myself with a chuckle.
My tour guide, Lisa Condie, was like a travel wizard who had arranged for every detail. She knew when I would be arriving, she was able to help me figure out an issue with my cell phone data service that I found wasn’t working upon my arrival in Florence. Lisa came to meet me at the Hotel Pierre where I’d be staying for the first leg of my trip and we walked to her apartment, while the rain fell on the cobblestone streets around us, where I got to see how actual residents lived. I saw neighborhoods, laundry hanging outside being hastily pulled inside from the rain, women dressed to the nines scurrying around in impossible heels as if the fear of falling was something that other people had.
I remember having a hard time keeping up with Lisa’s pace. She was a fast walker to begin with and it was raining. I did my best but walked at least a step behind her the whole way to her apartment but I stumbled on, pretending it was just me not being used to walking so fast and Lisa being an obvious expert. When we got to her apartment and got about solving my digital difficulties, I was happy for the little rest before we would trudge back through the rain to the Hotel Pierre to await the arrival of the rest of our tour group.
I remember being too excited about the tour and meeting my new friends for the week to feel too concerned about how strange my legs were feeling. We had a walking tour scheduled with one of Lisa’s ex-pat friends who also lived in Florence and was the local art history, Florentine expert extraordinaire who gave the city’s most sought after tours. Alexandra Lawrence was as good as her reputation and then some! She made the tour not only informative, but also fun. I was feeling the fatigue creep up on me by the end of the walking tour, but I pushed it down because there was dinner to look forward to and I wouldn’t miss that for anything. “Ignore it, and it will go away,” I thought. I was the youngest in our group of 8 and I’d be damned if I was going to let being a little tired hold me back.
On another day, with another destination in mind, this time to the Oltrarno or “other side” of Florence to take a walk up a long hill through a rose garden to a church that offered some of the most amazing views of Italy. I’d gone to bed early, to get some extra rest to help make sure I’d be rearing to go the following morning. We were going to see the Church of San Miniato al Monte – at the top of the hillside – where the best view of all of Florence could be seen along with one of the most amazing Romanesque churches in all of Italy. Lisa told us there was a cemetery outside San Miniato that was beyond beautiful. I couldn’t wait to see it. I love cemeteries.
On the way up the hill was when it finally happened.
I had kept up pretty well during the whole long walk across Florence and I was feeling pretty pleased with myself. I was walking up the pathway to the church with the ladies when I could no longer feel my legs. When I looked down, my ankles were turning in on themselves. I remember thinking, “That’s strange. My legs look like they’re made of silly putty.” I let the ladies know something was happening to me. I needed help to sit down. Luckily there was a little fountain nearby with a stone wall around it where I could sit. I barely made it before I was about to fall, but I made it. And I urged the tour group to go on ahead without me. There was no way I could walk any further just then. I’d be there when they came back down and I’d rest and hope to be feeling better. They fussed over me, and kindly offered to sit with me, but I knew I was about to lose it and I needed to be alone when it happened.
I sat on the side of that little fountain and cried. Tourists with selfie sticks (the bane of my existence in Italy, they were everywhere!) cozied up close to me to get their perfect shot with the fountain in the background and I was thinking, “Seriously? You can’t see a nice American girl having a breakdown over here? Back off!” But I didn’t say anything. I just cried. Then I texted my best friend at home and my sister. I snapped a few photos. The view was truly breathtaking. I supposed that if one had to find oneself crippled on a hillside anywhere in the world, this particular hillside was probably one of the best. I gathered myself. And prayed. I’m not sure what I believe, and I hadn’t prayed in a very long time but I needed something to ask for help in that particular situation and it just kind of happened. I prayed I’d be able to walk when my friends came back for me.
And I could walk when my friends came back. We walked slowly and carefully, my new friends all fussed and worried over me. I was scared to death but didn’t want anyone to really know that so we grabbed some gelato at a shop at the bottom of the hill and walked slowly back through Florence to the Hotel Pierre where I would flop on my bed and cry a bit more. I laid on my tiny bed with my legs vertically up the wall (“legs up the wall cures all” I remembered someone telling me once…it’s not true.)
I knew, on that hillside in Florence, that I couldn’t pretend anymore that something terrible wasn’t happening to me. I wasn’t just out of shape, there was something very, very wrong with me. I had trouble walking for the rest of the trip but one of my compatriots, Jeannette from Las Vegas, was recovering from an ankle injury so she had to walk slow too and take frequent breaks. I have never been more grateful for a stranger with an ankle injury in all of my life. She made me feel better about taking things slow.
I missed out on a few things for the remainder of the trip because I knew my body wasn’t behaving normally. I resented it. But I didn’t know what else to do. I will always be grateful for my new friend Cathy, from Florida, who took pictures of the hike the group took at Cinque Terre – one of the things I decided I just wasn’t willing to risk trying. I didn’t want to be stranded on the side of any more hills. I didn’t want to hold up the rest of the group either. Cathy sent me her pictures. The ladies told me afterwards that I probably made the right decision. The hike, though gorgeous, was rigorous and not likely something I would have been able to manage.
You know how the rest goes.
I came home, saw a neurologist who sent me for my first MRIs ever and a few days after that I was informed I probably had multiple sclerosis and I would need to schedule myself for a spinal tap to confirm my diagnosis. That was really fun! (That wasn’t even a little bit fun and I hope to never have to go through that again). I definitely had MS – and this whole crazy journey began.
But now what? How does one have a proper mid-life crisis if one can’t figure out how to have new adventures, see new places, make new plans, or start living an authentic life after 50?
The truth is, I was already living an authentic life. I was enjoying the fruits of my self-discovery. I’d stopped trying to be something I thought people wanted and started being someone I wanted to be. I had a rosy outlook for what 50 would bring. I didn’t fear it or dread it or any of that. Since Chuck’s death my philosophy about getting older became frightfully simple: Any birthday one has the privilege of having is a good birthday to have. Period.
I’m not even experiencing the angst I would have expected from someone like me, who is horribly vain. I don’t care about looking older. I just don’t care anymore. I barely care about any of the things I used to care about – things that I thought, in many ways, defined me. I don’t care about how people perceive me, how old I look, how unfashionable my shoes have become or how often I leave the house without a stitch of makeup. I just don’t care anymore.
What happens when you stop caring about all the things you thought you cared about so much?
How do you have a proper mid-life crisis (or mid-life epiphany – whichever you prefer) when you are consumed with the fear that you might not get any better; you might not ever be able to walk very far (certainly not so far as one would have to walk to properly explore the world); or, you might not want to be awake long enough to have new adventures?
How do you chart a course for the next phase of your so-called life when you can’t DO what people normally DO to make the most of their “golden years?”
My guess is that you just don’t. You don’t try to figure it out and you certainly don’t make plans to explore the great big wide world, walking around Florence until there are holes in your shoes.
My guess is that you have to look inside. Figure out how to be OK with the reality of what life has given you. You have to figure out how to focus on gratitude for all of the obvious advantages, goodness and love the universe has gracefully delivered to your life (along with a few super shitty curve balls) and live the best version of this life that you can, even if it’s not what you imagined it would be.
I learned once before how to treasure a life I didn’t want. I have to believe I will do that again. Maybe that’s my secret super power that I will embrace once again, as I stare down the big 5-0.