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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tales of an elderly shut-in, episode 1

Funny things happen when you spend a lot of time alone. Your brain goes places long ago left behind. You start thinking about every little thing.

I find it odd, specifically because I have always spent a lot of time alone and I have also always enjoyed the crap out of that fact. Maybe it's because I get so much of people in my work? By the time I get home from all of the managing, talking, maneuvering, game-of-thrones-playing and otherwise interacting with my team, my clients and my colleagues I am fairly well talked out. I make a nightly call to my mom on my way home from work so that once I finally walk in the door, I don't need to talk to another single human until the next day. It's kind of glorious.

Even though I've been home for over a week dealing with this vertigo mess, I've had more visitors than I usually have and a lot more social visits – even though most of them occurred in my bedroom with visitors gazing down upon me lying flat on my back, I still got to see people. It was nice. But now that I'm facing down another Monday and likely a week where I will be working from home, it's starting to motivate strange thoughts in my brain. Like…why am I so happy alone?

Am I trying to protect myself? I mean, it's possible. I've not chosen very wisely in my long years of relationships with men. Probably because most of them weren't men so much as boys. My husband and I were as opposite as opposites get. He was fun-loving and happy, the life of every party – I was intense and responsible. Once he was gone, I took it on myself to make up for his absence by being as "fun" as I could be (you can interpret that as you will, but I think you know what I mean). I had a particular weakness for bartenders, ideally under 25.

I had a few bigger relationships, sure I did. None of them were what I would now call very real. I was looking to fill a void, change my own perception of myself, or even just experimenting to learn more about myself. Filling time! Having mindless fun.

The last big fling was such an unmitigated disaster (I was around 43? I think? It's hard to remember) that I haven't gone back to the plate since. I have no idea why I'm using sports metaphors. I literally hate sports. I also literally hate being in relationships, based on my reflections of late.

A friend of mine posted on Facebook tonight about how long she'd been single and how it might be time to head out there again. This is a really good friend, which might seem odd because we've never actually met in person but to say that she has become one of my best friends in such a short time would not be an understatement. She is my MS guru. My sounding board. She makes me laugh. She understands when I cry. That post of hers today made me think how long it's been since I've been in anything even resembling a relationship and it's a damn long time.

Like 8 years???

The funny thing is, even now that I have been diagnosed with a life-long chronic illness that makes living alone a challenge at times, I sincerely believe that the only thing that could make this whole experience worse would be to have to go through it in front of another human.

When I'm so low that I can only crawl up the stairs; When I'm so sad I just lay on the couch and sob while four animals lick my face trying to get my tears before they dry up; When I'm so tired I can only roll over and cling to my body pillow and close my eyes for a few more hours; there is nobody to pressure me. Nobody to urge me to try harder. Nobody who cares if my bedhead is so bad that it's officially become performance art.

When I need help, I've found ways to get it. Friends and family get the nod for being awesome just because they love me and believe me when I tell you, I've needed them. When things happen that aren't practical to bother friends and family for, I do what every single woman of a certain age must do. I HIRE SOMEONE! If it can be delivered, I order it. If it can be hired out, I do it. My current staff includes the following:

  • Cleaning lady
  • Yard guy
  • Window and gutter cleaning lady
  • Tree trimmer guy
  • Bug spraying guy
  • The usuals like plumbers, electricians and other handy people
  • Grocery stores where I can order online that put my groceries in my car for me
  • The people who make me feel better on the outside (hair girl, nail girl, massage guy – I have the general maintenance covered).
  • Various Postmates drivers (who may actually count as long-term relationships now that I think about it).

None of this is cheap, of course, but it makes life so much easier especially when your body seems intent on making life as hard as it can possibly be. Then there are my people at work who I can rely on for just about anything be it food for lunch, delivery of medicine, meetings in my living room while I can't stand up so good, general comradery – it's almost more productive than actually being in the office.

But I've been in this house for more than a week now and my mind wanders to strange places where I find myself wondering…why is it that I'm so happy alone?

I prefer my singular strangeness, quirks, bizarre habits and rituals when they are mine alone. Having so many people in and out all week has proven this to me. It makes me squirmy to explain to people all of the strange things/routines/rituals I have in my house day-to-day. Why everything looks super spiffy on the outside but the drawers are a disorganized mess. Why I put the cat bowls where I put them (in the same positions every single day). How I thoroughly scoop the litter boxes as if I'm being judged by a highly critical board of experts. How I make my bed the way I make it – and make it again before I get into it, if for some off chance I was too tired to do it that morning. How I fluff the pillows on my couch before I go to bed each night. How I only read in bed and how I've seen every episode of Law & Order SVU at least 500 times and can likely recite each one of them for you.

These things don't make me sad. They make me intensely happy. I feel the most me that I ever feel when I am home alone. Sometimes I think it's because of what I've done the minute I've gotten into any kind of relationship throughout my entire life. That would be immediately start trying to change myself into who some guy thought I should be. Or more accurately what I thought some guy wanted me to be. It has never not happened. Wait. That's a lie. It has happened at least once. Maybe twice. But each time there were other reasons so concrete why that dalliance could never go anywhere at all, it was never really that much of threat to my singularity. I knew I'd be back before long. And I'd have the same overwhelmingly familiar feeling when it was over.

Relief.

I know what you're thinking. You're thinking, "Oh Beth, stop, you just haven't met the right person yet! You're putting up walls to keep others out! You aren't really happy you just THINK you are and that's so sad!" But those of you that know me well will definitely understand. You get how being myself, and only myself, is so important to me, so hard-won a battle, that I've just not met the man yet who would be worth the risk of even losing a tiny bit of me in the making of a couple.

I'm not sure that man exists and to be frank, I'm almost glad of it. What the heck would I be doing with him now? Making him carry litter up the stairs? Take out my trash? Fix things that are broken? Make me happy when I feel sad?

Nobody can make me happy when I feel sad. Only I can do that. I learned that a long time ago. I found peace when I stopped looking outside of myself for that thing that would make me whole. I found peace in my solitude.

I guess that's a good thing, too. In my convalescence, I have a new member of my staff this week who I've already fallen in love with. She's my new cat helper, Kathy. I found her through another angel of a friend who knows what it's like to be a crazy cat lady with four cats and temporarily incapacitated.

My new cat sitter comes twice a day to feed and scoop. In the mornings, it's the most amazing thing! She gets here amazingly early (before the kitties have started their morning ritual of pouncing on my sleeping form to wake me for feeding time). I sleep right through it! I've gotten the best sleep of my life these past few days. While I am still dizzy as hell, I am starting to feel a little better. I can see better. I can read! I can sit upright for a few hours and not feel like I'm going to perish. It can't be long before I can leave the house, right? Things are looking up!

Tonight, when she came by for dinner hour, I was gushing all over her about how grateful I am for her help. It eases my mind more than you can imagine to know that I don't have to bend over, use steps and generally take my life in my hands in order to keep up with my rather um, extreme, kitty care standards, I told her. She is a wonderful human. She scoops like it was an Olympic sport! After I got done gushing, she said how happy she was that she hadn't woken me up this morning when she got in to do the morning shift.

"I was trying to be super quiet," she said. "I know how much you need your rest and I would have hated to wake you. I had some trouble with my key this morning and I was worried that it would disturb you but then I got the door open and headed up the stairs and I could hear you snoring, so I knew you were fast asleep! I was so relieved!"

I COULD HEAR YOU SNORING?!?!?!?

So there you have it. I snore. I had no idea. I thought maybe I snored occasionally, and when I did it would be tiny little snorts sort of like an adorable baby piglet would make and they certainly wouldn't be heard all the way from the steps. OH. MY. GOD.

I've added to the list of reasons why I'm happy to wallow in my solitude. My joyful, peaceful, calming solitude. My personal quiet sanctuary where I can be fully myself and nobody else. Maybe when I stumble across the man who can embrace all of that (AND the fact that I snore) I'll be willing to open the door a little. Or maybe not. I mean, unless he happens to stumble into my living room, it's highly unlikely that Mr. Right for Beth is going to make an appearance any time soon.

Unless he's the UPS guy. Who also loves cats. And chicks who snore.

 

 

The most important rule of MS Club

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

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

Strange things are afoot.

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

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

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

Just pump your brakes and take it slow.

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

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

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

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

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

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

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

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

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

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

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

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

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

The problem with “and”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I found myself wondering…Hmmmmm.

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

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

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

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

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

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

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

My Mid-Life Crisis: MS edition

The view from my perch in Giardino delle Rose in Florence, Italy.
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.

My fountain, my wall, my place to have a breakdown.
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.

(PS. If you’d like to read an amazing book that tells the tale of how Lisa Condie came to create her company, and quite literally found her true self in Tuscany, get her book, “I Found Myself in Tuscany!” https://www.amazon.com/Found-Myself-Tuscany-Lisa-Condie/dp/0692812121/ref=sr_1_1?s=books&ie=UTF8&qid=1484530315&sr=1-1&keywords=i+found+myself+in+tuscany It’s a fantastic read. You won’t regret it.)