Well. That’s probably going a bit far but I got this in the mail today:
Of course, I have no actual idea how I actually go about getting this fancy new drug, no clue how much it’s gonna cost me or how I actually get the drug into my grubby hands but as you would expect, I’ve already contacted the ever helpful Nurse Carol to ask for her assistance.
Oh. One more thing. I also have no idea if this drug will work or what it will do to me otherwise, such as side effects etc. I suppose I’ll be finding out. Eventually. Once the magical specialty pharmacy elves deposit my new pills in the stocking that is currently hanging by my fireplace (I’m guessing that’s not how it works at all, but wouldn’t that be nice?)
It’s hard for me to get my head around how a drug can help me to walk better. It’s just so…strange. How is it going to do that exactly? It sounds to me suspiciously like some kind of voodoo trick or a magical elixir that one would purchase from the back of a covered wagon. Do they have a specialty drug that will make me fly too? I would find that claim easier to believe than the idea that I will pop a pill (or two) each day that will suddenly make my legs operate more like legs should.
It’s funny to me how this whole thing plays out. It’s like one giant game. First you try to get the drug. Then you wait for the drug to come (I assume the specialty pharmacy delivers?), then you hold your breath waiting to see if it makes you grow facial hair or a second chin while it’s also trying to help you walk a bit better.
I guess we’ll see, then, won’t we? Until then, I will wait with baited breath for some sign of what comes next. I’m becoming an excellent waiter.
I have always paid a great deal of attention to its bedding, its pillows, its mattress quality. I’ve spent more time and money thinking about and outfitting my bed than most people spend on their entire home. Once a long time ago, an ex-boyfriend referred to my bed as the Puffy Village because he said it was so ridiculously comfortable that you could spend your whole life in it and be perfectly happy and content. The name stuck (the boyfriend didn’t, but que sera sera, no?).
This weekend I spent a great deal of time actually in the Puffy. Sleeping. Most of the time blissfully sleeping, some of the time sleeping fitfully experiencing some rather complex, vivid and not-so-fun dreams that sometimes result from my nighttime drug cocktail. I stayed up later than usual both Friday and Saturday watching The Crown and surfing social media – more time spent on social media than is probably healthy, but that’s another post entirely.
I’d fall asleep around midnight or 1AM, wake up around 8AM to feed the hungry creatures who alert me to feeding time by pouncing on my full bladder or my boobs (ouch). Then I drag myself zombie-like back to the Puffy and roll over like I never left and fall happily to sleep again.
Let me talk a little bit more about the Puffy.
I believe in quality sheets. I just do. I think life is too short not to sleep on fantastic sheets. I’ve felt this way well before I had an income to support purchasing quality sheets but I never let that stop me. I have three large steamer trunks on my second floor and they are all full of sheets. I like my sheets to feel good but to also look comforting and peaceful. I like them to match. I also have a fourth cedar chest in my basement that is full of sheets – but those are flannel sheets only used when it gets really, really cold. I realize how horrifying it is to make these admissions here, in virtual public.
I have always loved quilts. I never had a quilt on my bed when I was a kid. I wanted a vintage, sewn-by-some-wise-old-woman-from-scraps-of-precious-material-by-hand quilt. We weren’t a quilt family. We were an afghan family. Italians like to crochet, I guess?
Anyway, when I got my first bed of my own as an adult I also got my first quilt. I now own four. I change them based on the color of my sheets and their weight (some are heavier, some are lighter, it’s kind of an intricate science). I love each one of them. I often wonder who will take them for their own when I die. My quilts should be heirlooms to be treasured.
I’m not entirely right in the head.
I am also a connoisseur of fine down and down-alternative comforters. I have super puffy winter weight comforters (two of them, to be exact) that are cozy and warm no matter how crazy cold it gets in my very old and hard-to-heat, drafty house. I have a lightweight comforter for the spring nights when there is still a little chill in the air when you go to bed at night but the windows are open and you can hear the breeze in the leaves on the tree outside the bedroom window and it feels amazing. I keep those in the closet in the bedroom and I change them out according to my whim.
I used to make a big to-do about clean sheet day. It used to be Clean Sheet Sunday when I would go through the stripping of the bed, the quilt, the comforter and launder what needed laundering but usually just grab the next set of luxurious sheets from the top of one of my sheet trunks and toss the dirty ones down the laundry chute. Don’t ask me how many sets of sheets are currently in the basement waiting to be laundered right now, as we speak. It’s embarrassing.
I really loved Clean Sheet Sunday. I documented it religiously on Instagram. Now it’s not always a Sunday. It’s whenever the MS gods choose to give me the energy to perform the whole operation without killing myself in the process. I don’t document it as often on Instagram. Maybe I’m embarrassed that it’s not happening as often as it used to? Maybe I realized finally that not everyone is as obsessed with my bedding as I am. Either way, I love clean sheets.
When I hear someone say that phrase that people say when they are boasting about their fantastic, adventure-filled lives, “I can sleep when I’m dead” I get a little crazy. Without exception, I want to punch those people. I love my bed. I love sleeping. How dare you act like such a wonderful, blissful experience is not worthy of your precious time? I think of those people in the same way I think of people who boast energetically about ONLY listening to NPR, NEVER watching television and ALWAYS reading only classic literature. Whatever. I love to sleep.
But on both Saturday and Sunday I slept in until 3PM. I went to the neighborhood pharmacy in my pajamas on Friday afternoon, a work-from-home day. On Saturday, I didn’t even bother getting out of my pajamas. I knew I’d not leave the house and I had no desire to waste a perfectly good clean pair of yoga pants on lounging about. So I just didn’t. And no. I don’t do yoga.
I find myself feeling some kind of way about this overwhelming urge to sleep my life away. I want to scold myself for being so lazy and squandering so much time unconscious. I want to scold myself for being a loser for sleeping so much of the weekend away.
I had to talk myself out of that. The thing is, I had a super busy week last week at work. Not physically, mind you, but mentally my job requires a lot of energy, focus and just plain time. I’d be a liar if I said that it doesn’t suck the energy from my body like an invading alien.
All of the planning, thinking, maneuvering, strategizing (and sometimes drama) take it out of me. By the end of the week, I am physically spent. I want to scold myself for devoting so much of my precious energy to something like my work. I should be trying to spend more of that time taking care of my ever-failing body and my ever-diminishing physicality.
But I love my job. I love the people I work with. I love using my brain to solve problems and come up with ideas for how to sell things better. I love my job for making me feel a part of the world out there. I am nowhere near the place in my life where not working is even an option for me. MS has taken a lot from me in this first year of my diagnosis, but I won’t let it take my work from me. My work is a huge part of who I am. It might be sucking me dry right now, but that’s just the way it’s got to be.
So, lost weekends might be the norm for me for awhile. I need to sleep. I want to sleep. I have a freakishly fantastic place in which to sleep. I’m just going to sleep.
I’m constantly judging myself as a person with MS. I try to fight! I try to be the “MS doesn’t have me” girl that the commercials all show! I want to be a MS-achiever! I want to prove the diagnosis wrong and have a life just like the one I used to have before MS.
But that’s idiotic. I have MS and I need to sleep. I need to sleep a lot. On top of that, I actually love sleeping. I love the Puffy Village. And that’s just how it’s gonna be. For now. Who knows how it’s going to be tomorrow? Or next weekend? Or next year? For now I will spend the weekend sleeping when I need to and I will stop judging myself negatively for doing so.
Or I will at least try. Those sheets don’t pay for themselves people.
Who doesn’t want to see Hamilton? I want to meet that person because I’ve been obsessed with the idea of seeing this show on Broadway the second I popped the soundtrack into the CD player in my car. I’ve been singing the songs, reading the books, educating myself on the historical backstory and did I mention singing the songs? Because I’ve been singing some songs! If you’ve had the opportunity to drive with me in my car any distance at all, you heard me sing those songs, too.
I’m especially good on Eliza’s parts, just saying.
A lot of people ask me how we got the tickets. My niece has seen Hamilton three times now (I know. Hello? Spoiled much? The kid is my hero.) After one of her first times, she went online and was one of the first 5,000 people to sign up for the Hamilton mailing list and as a result she got early email alerts when new blocks of tickets went on sale before the general public. One night, about a year ago, I was at my sister’s house having Sunday family dinner when Lani got one of those email alerts and we pounced. It was almost a year ago. The dates for the tickets seemed so far off! Like the show would never come.
I was early in my diagnosis, then. I had very little experience with life with MS. I also was early on in my treatment, and I think it’s safe to say, a lot more optimistic about what my life would be like a year into the future. I remember thinking to myself, “Well, by then my treatment will have kicked in! I’ll be in remission. I will be feeling better and more up for traveling. It will be awesome to have something amazing to look forward to after all of this time feeling like such ass.” So I told Lani to pounce. I was in.
Fast forward to a year later, January 2017 and Hamilton was looming.
I was super excited but also a more than a little bit worried. Those thoughts I had about feeling better and being in remission and all of that happy horse shit felt like the optimistic ramblings of a goddamn unicorn wrangler to me now. I was forced, again, to evaluate the year since my diagnosis and face the fact that things have gone pretty steadily downhill. There’s just no denying it.
I have trouble walking any farther than a block, maybe two. Depending on the day, I might even have trouble walking that far. I am perennially exhausted to the point where I can barely stay awake long enough to get myself to work during the week. You could say my social life has taken somewhat of a turn. I don’t go out much. I drive everywhere. I make strategic plans on the level of what I imagine CIA operatives do for major missions, but for me it’s just to get my through a regular day.
I calculate how to walk as few steps as possible and still somehow get where I need to go. I’ve limited my travel to only the most necessary trips (and with my job, that is a challenge). I have to plan every day around places where I will be faced with unavoidable steps, how close I will be to a bathroom (I pee a whole lot), where I will be too hot (or too cold), where I can have an easy place to sit down when my legs feel like they might give out (you’d be surprised how complicated this can be), not to mention whether or not there will be railings or something for me to hold on to when I feel unsteady. Surprisingly often, there just aren’t.
New York is one of my favorite places in the world. I used to dream about living there when I was younger and job opportunities came up every now and then to head to the big city. For one reason or another, I never took any of those jobs and I stayed in Pittsburgh. Home was always the right place for me but I got to travel to the city for work quite a bit and I fell in love with the energy of Manhattan.
But let’s be honest, here. Manhattan is a walking city. It’s the best way to have the New York experience. For those of us plagued by motion sickness, it can be the only way to have the New York experience. Cabs and Ubers are awesome, except for when a short ride makes you sick as a dog and ruins the whole day. So you walk, you explore, you find yourself in places you didn’t know you wanted to go but are (mostly) glad you did. You walk around and pretend to live in that coolest of cool cities. You soak it in.
I knew I wasn’t going to be able to do that on this trip. I considered renting or buying a transport chair because I was so worried about potentially not being able to walk far enough to get to Hamilton, but after thinking about this more and bringing it up in the infusion room for some opinions from people more experienced than me with this disease, a transport chair didn’t feel all that practical for the crowded, fast-paced streets of Manhattan. Instead, we found a hotel that was four blocks from Hamilton and two blocks from Cats. It wasn’t cheap – but I knew it was the best option for me to make sure I could see the shows. So we booked it.
I gave myself a pretty stern talking to.
Just get to the shows, I told myself. You don’t have to run around the city sight seeing or shopping. You’ve been to New York so many times! And god knows you don’t need to buy a single solitary thing. Just get to both shows and the trip is a win. Anything beyond plopping my ass in two theater seats in two different theaters would be gravy. My sister and my niece would be with me and we were driving to the city, so I wouldn’t have the airport exhaustion to deal with. They would have each other to have fun with during the days when I assumed I’d have to rest in order to be show ready. It could work. It could be fun. It would just be different.
And it was both fun AND different. Some summary thoughts…
I did make it to both shows. Walking to Hamilton on the first night was kind of a drag. My sister noted that I was moving my legs from my hips like my knees wouldn’t bend. I never realized that’s what Frankenlegs is a result of! But it is. Too bad knowing that doesn’t fix it.
I didn’t go out that much otherwise. On night one, my sister had to steal contraband take out from a NYC eatery where a server unceremoniously informed her they do not “do take out.” Well. She did take out for me. She smuggled me some amazing pork buns in her purse wrapped in cloth napkins. They were amazing! (Picture above…does not do them justice.) People should probably learn that telling my sister she can’t do something is pretty much a guarantee that she will do said thing. Lucky for me!
On day two I pretty much slept all day. Who knew sitting in a car for 6 hours made a girl so tired? But I was so tired, so I slept. When I woke up a few times, I thought about taking a short walk outside the hotel to get food. But the thing that sucks about unreliable legs and being alone is that your legs are, well, unreliable. I didn’t want to rely on the kindness of strangers! I didn’t think walking even a short distance alone was a good idea. That sucks because I really like to be alone. I like to explore alone. I had to admit it wasn’t a good idea – so I didn’t do it. But I did eat delicious NY bagels right from my room.
On night two, I rallied and went to dinner with my sister and Lani before Cats at an amazing restaurant called Upland. It was far enough away that I could easily Uber there and back to the show. Lani gets terrible motion sickness (much like me) so she and my sister walked to the restaurant and met me there. I had a short wait alone at the bar where I enjoyed eavesdropping on several super unsavory dates that made me really happy that I don’t do that sort of thing. It was an amazing meal.
I also Uber-ed to Cats, got there a little early and had a really nice usher show me directly to the handi-bathroom on the theater floor that also happened to be right next to our Orchestra seats. Winning!
Cats was…interesting. I love cats. I really do. I mean I really, really love actual felines AND musical theater! But…whoah. At several points during the performance, my sister and I got into crazy laughing fits like we used to get during weekly mass while in Catholic grade school. I cried more than once – but in a very good way. I’m not sorry I saw Cats. But guys. It’s a weird show.
Postmates is a MS-girl’s best friend. Particularly in NYC. God bless the Postmates for bringing me an amazing whole milk ricotta bagel sandwich from Black Seed on Friday morning before we left. I also got a dozen bagels which I am still eating, and damn! There is nothing like a NYC bagel.
If you have any chance, ever, any way possible, to go see Hamilton…GO. Go if you have to crawl to the theater on your hands and knees, go. It was that good. And also the perfect antidote to certain political realities that have made my soul sick as of late. It was an amazing display of talent, diversity and joy. I will go again if ever given the chance.
This weekend, post-trip, has been a blur of sleeping, sleeping and more sleeping – the usual MS recovery experience compounded by the fact that I have some kind of viral illness that hit me a few days before we left for New York (because of course I got sick right before this trip). I read somewhere that getting any ordinary sickness when you have MS is always worse than it would be if you didn’t have MS and I have to tell you, that is irrefutably true! I am hacking like a pack-a-day smoker, I have no voice at all and there’s no end in sight.
But it was worth it. I got to be in the room where it happened.
This trip gave me more things to think about. More things to ponder and consider and figure out related to how I’m going to live any kind of life at all while having this disease at the same time. Doing things like this force you to accept that there is no denying how far reaching the tentacles of multiple sclerosis reach into your life – so much deeper and further than you ever think they will when you first get diagnosed.
I am forced to admit that I am afraid to do things alone that I would have given no thought to pre-disease. I have to figure that part out because I really love to be alone. I love it a lot but I can’t always love it from my living room. I have to find a way to work that part out.
My sister reminded me on this trip that I never loved walking for miles and miles and miles. I used to get annoyed when she would expect me to spend the entire day walking and walking with no end in sight. I just didn’t think that was so much fun. I like to walk to a place – relax and enjoy that place, and then maybe walk back or maybe even hop a cab! I’m notoriously lazy. Always have been. I’m not even remotely ashamed of that.
It wasn’t that I couldn’t walk around with them all day, on this trip that bothered me. I wouldn’t have even wanted to do that. That is their thing, not mine. It was that I was too unsure to walk anywhere alone that really got to me. I have to figure that part out. Or figure out more cities to explore where I can mostly drive and only walk a little bit.
It’s funny how all it takes to make a girl want to do things she’s never wanted to do before is to have that girl realize that now, she couldn’t even if she wanted to.
There’s the rub.
I saw both shows. I had a great dinner. I laughed until I cried more than one time. I’m chalking this up as a major victory regardless of how much money I spent on Postmates deliveries.
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.
The image above gives a fairly accurate representation of what it feels like the day before I head to Allegheny General Hospital for my monthly fill up (it also looks freakishly a lot like my actual hair, which I will never stop being amused by).
It’s funny. I have been convinced that Tysabri wasn’t helping me. I spent some time reading over my journal entries from 2016 and it is flat out undeniable that I took a pretty good downhill plunge over the course of the year after my diagnosis. Friends with MS tell me this is not unusual. Sometimes the downhill plunge lasts years before you get to the new normal – the place where you never really feel great but you don’t always feel like total excrement either and somehow that’s OK after three or four years of feeling like utter shite.
I’m only a year in. Almost 12 months of monthly infusions. Not quite 12, really, since my insurance company made me wait three months for the honor of their approval on my doctor’s treatment of choice, but almost a year.
Pretty soon, because of my JC Virus status, I will likely be kicked off of Tysabri anyway, mostly because feeling generally crappy is so much better than dying of a deadly brain disease which is what could happen if I stay on Tysabri for too long. Being JC positive means my time on the juice is limited.
I was convinced Tysabri was trying to kill me from the start (because he was, he never even tried to hide it). The bitch of it is, he wasn’t even a great match even in the honeymoon period. Tysabri didn’t make me feel good. Some days I thought he made me feel worse. Like the bad boyfriend who you just can’t quit, I struggled with the sense that I was in a bad relationship and just like other bad relationships I’ve been part of in the past, I stayed in this one because I was afraid to walk away.
I told myself to be strong. Call him out for the imposter he is! Tell The Great Scott (TGS), the ultimate yenta matchmaker, that I deserve a better relationship with a better drug – maybe one that will actually help me this time. I worked up the gumption and told TGS at my last appointment that I think I deserve better.
TGS mentioned that he might want to introduce me to a new guy. He lives in another country (meaning, he’s not allowed to help me yet in the United States because he’s still awaiting FDA approval) but he’s on his way here and he is far less likely to kill me. In fact, he seems to be a better partner overall – showing great results in some really stubborn situations (like for example, primary progressive MS which I remain relatively sure I have and nobody, least of all The Great Scott, wants to admit that to me because it’s kind of a hopeless thing to admit).
As luck would have it, the FDA decided to take a little longer to approve my new man, therefore, I find myself running on empty (again) desperately awaiting the date with that old drug that I’m not convinced is even working all that well. I have to admit it probably is working better than I think, because when I’m running on fumes (like I am now on infusion eve) I cannot deny that I’ve felt better than this earlier in the month. Not much better, mind you. But better.
Today I can barely walk. Tomorrow I will show up for my juice injection and then spend the rest of the day sleeping (he really takes it out of me). After that, I will have a few less than crappy days until I start running low again…and the whole cycle repeats itself next month.
We always knew this was just a fling, Tysabri and me. We’re still together even though we know our relationship is doomed and there’s a new beau lurking in the wings. Until the mysterious Mr. O arrives, (his full name, Ocrelizumab, is really hard to say so I’m hoping pet names are established fairly early in our relationship), Tysabri is kind of the best I have to hope for.
The really awesome thing is that once Ocrelizumab is FDA approved I will go down the health insurance rabbit hole, again, as my insurance provider will almost certainly reject me for this potentially revolutionary new treatment and make me wait months for their gracious approval. They just did exactly that already this week for a new drug my doctors think will help me walk better. Insurance said, “Yeah, no. We’re gonna make you guys jump through some hoops again. How important is walking anyway? I mean, seriously, get over it Beth. REJECTED.”
The beauty of the fact that a disease that zaps you of energy takes so damn much of just that in order to fight the fight to get the care you need is a topic for another day. I’m both excited and not excited to go down the health insurance rabbit hole again.
Sometimes a bad relationship feels better than no relationship at all. While I’ve personally learned over the course of many, many years how untrue that is (and have thus avoided this very thing in my personal life rather successfully), the specter of the bad relationship just won’t leave me be.
So I guess I’ll put on my best comfy clothes tomorrow and fix my bedhead up real nice for my date with Tysabri in the morning.
He won’t appreciate it. But, for now, I’m giving it my all. At least until something better comes along.
I’ve been dying to write. Ideas have been popping into my head left and right, topics for discussion, news related to my MS, my life…life in general!
Here’s the thing. I went back to work this week. I’ve been off work since mid-December because I stacked a bunch of unused vacation days to use at the end of the year. I had a nice long break. I needed a nice long break, so it was most welcome this time. I’ve done this before but I usually don’t enjoy it as much. I used to start missing the hustle and bustle of daily life. I start missing the office. I guess I did that this time, too, but looking back on the week, I’m starting to realize some things.
I needed a break from work but I was surprised by how much I needed it. Once it was underway, I realized how much space work takes up not only in my brain but in my body and my soul. It takes a lot of effort to keep things moving like everything is “normal.” All of that pretending takes a lot of concentration and focus.
I was in my bed every single night this week by or before 8PM. I even worked from home one day. I got a ton of things accomplished last week at work, I really did. I enjoyed it. I was excited by it.
I was also completely depleted by it.
So even though I have many things in my mind and on my mind that I want to write about both here and in my journal, I haven’t had the energy to do it. Playing the game called daily life has taken precedence.