Random thoughts while waiting for my car to de-ice

My actual face after sitting in my actual car for literally 43 minutes.

You know my constant debate…

Go to the outside world, play the Old Me (who walks really funny but I don’t walk that much or that far, so it’s cool) and visit with some of my favorite normals in my downtown office? Or stay home and be uber productive in the relative safety of my home.

It’s never easy, this whole game I play with should I stay or should I go now, but the benefits are huge so I keep myself motivated to keep on keeping on and walk out the damn door when I physically can to get myself to the office. It’s important to me.

The weather hasn’t been on my side lately. I discovered this winter that the cold messes me up nearly as badly as intense heat. Color me informed. The extreme cold turns me (and some others from what I’ve been told) into what I like to call the Tin Man. The Tin Man before Dorothy came along with her trusty oil can, I mean. My whole body feels solid. Stiff. It becomes hard to move. Like, at all. You feel frozen in space which is fine except for you feel this way while out in the world full of fast-moving, often impatient people.

So lately when it’s single digit cold, I stick by the home office connected to the world by a bunch of letters (VPN, WWW, IM, ATT…) I could go on, but I won’t. It’s warm at the home office. But not too warm! Because we all know what happens when we get too warm…liquid squid body. Everything feels liquid, melty, fluid. Again, not bad things to be unless you’re out in the world full of fast-moving, often impatient people. People have substance. They like to move their substances quickly.

Anyway. I’ve spent a few long days at home doing meeting after meeting on the phone or via webex or whatever and I really needed to get out of the house. I have an amazing office to go to! I really wanted to be in that office, talking to actual people’s actual faces. I was determined to get my butt out there and do the things. All of the things involved in getting out of the house (all completely necessary). Plans must be made.

It had snowed the day before. But before the snow started, it sleeted. Then it snowed, again. Then it got really, really cold. Ergo, the entire outside world full of surfaces and steps and other sneaky hazards is now covered with a thick layer of ice, covered by a twinkly white layer of snow. Oh. And look at that! My snow shoveler-guy used up the last of my ice melt and didn’t tell me. I have nothing with which to melt the icy world outside.

I think to myself…”Self,” I say, “Just drink that bullet-proof cup o’ joe, put on some clothes, douse your head in dry shampoo and slap on something that looks like makeup and see how you feel when that’s all done. You can wear Uggs! Nobody will judge.”

So I did just that.

I sat, rested, vaped a bit more and lo! My anxiety decreased and I thought I was ready to go…I would just walk really, really slowly and I would hang on for dear life to anything nearby be it a railing or my beloved cane, Stanley. I’ve grown to love him, reluctantly. He matches all of my clothes (he’s also black like my soul) and he doesn’t get mad when I forget and leave him behind in strange places. Who could resist that?

A couple of things I learned today (in no particular order):

  • Uggs – while flat, warm and oh so very basic – are not very good on slippery surfaces. Like steps. Like the cement steps down from my porch. The more you know.
  • While I have always been terribly ungraceful, uncoordinated, un-anything that means I have any locomotive skills for doing anything physical at all…It doesn’t really matter that I now have an excuse to be such a klutz. When faced with certain cement-filled death, miracles do happen! That expensive wrought iron railing I bought oh so long ago…totally worth every penny.
  • I walked gingerly across my snow covered grass to the driveway, clutching Stanley for my very life.
  • Freezing rain must pool around vehicles, or something, because my car was encased in ice and surrounded by what looked like small speed bumps made of ice.
  • Clinging to your brick house, your car, your cane and your backpack are all very reasonable when faced with speed bumps made of ice.
  • A miracle occurs. The car doors will open.
  • The entire car is caked in snow on top of ice on top of snow. I can’t brave the icy speed bumps to go back outside to scrape the car clean. I could easily perish by falling and sliding UNDER the car. I could run my own self over.
  • Sitting in the car with heat blaring at 82 degrees for 43 minutes may or may not be what one does when one is facing the reality of possibly running ones self over.
  • The ice eventually melts. EVENTUALLY. While it’s melting, one might sing the entire score of Jesus Christ Superstar while sweating off the makeup one took five precious minutes to apply.
  • As I am driving into town, it starts snowing. Again. Because of course it does.
My view from the red light as I drive into town on a gorgeous, balmy Thursday. The bridge. It looks ominous, doesn’t it? It might just be me.

Where was I?

  • I arrive in town and prepare to disembark at the valet at the hotel across the street from my office. We have an arrangement. Thank sweet baby Jesus, we have an arrangement. At the hotel across the street.
  • There is ice all over the place where it probably wouldn’t be an issue for even the average MS’er but it may or may not have required the assistance of two valets and an old woman to get me out of my car and into my office building…across the street. Yes. You read that right. ACROSS THE STREET. Wanted to make sure you got that.
  • I had a pretty great day in the office. I remember people! People are so awesome. Someone ordered Vietnamese food for lunch and got me some and…wow, I had no idea how much I’d love Vietnamese food. I’ve never had it before. How have I never had this before? So good.
  • I’m loving today!
  • I may or may not have vaped CBD in my office when the reliable MS back burning pain kicks in. Nobody cares, right? Right.
  • I had such a great day being with actual real people, I forgot to take my 4PM meds.
  • Two of my 4pM meds are pretty much required for any amount of locomotion. Ampyra (the walking drug). Baclofen (the muscle relaxer drug that lets my body actually move around a little).
  • I am stumbling out of the office clinging to Stanley and Sandy around 6PM. Sandy is a real person, and not a walking device. She’s my best friend and we work together. How lucky am I?
  • Sandy allows me to cling to her when we’re walking together in the outside world. It reminds of that thing that happens at every single Italian wedding you’ve ever been to. That thing where two old ladies dance with each other on the dance floor because their husbands are long gone but they straight up have the music in them so they dance with each other.
  • I’m not a big toucher. Neither is Sandy. But we’ve come to call this odd clinging behavior of mine cuddling. Clutching would probably be a better description, but whatevs. We cuddle all over town.
  • I actually have to lift my left leg with my arms to get it (and me) into the damn car. Sandy pays the valet for me. THANK GOD because those extra five steps would have put me on the sidewalk as sure as god made little green apples.

(As an aside, this is a very god-filled post for someone on the fence about the actual big guy himself…go figure. Nothing brings out the god in a girl like a degenerative disease. Amirite?)

Where was I?

  • I get home. By a miracle of the lord, again, and via my nephew Alex, all of the icebergs have been melted by the time I get out of my car in the driveway again.
  • I stumble to the front door thanking god (again) that I hadn’t forgotten Stanley in the office again. I am stymied by how badly I am walking. I mean, I walk funny! This is not in dispute. But I don’t walk THIS funny. Usually.
  • It is at that moment, I remember…my 4PM meds!!! I forgot my 4PM meds.

One tiny adjustment to my schedule (leaving the house) threw me for such a loop that I plum forgot the actual magical beans that try to turn me into a real girl. OK. I mixed up a bunch of Disney movie imagery there but you get me. I shouldn’t skip my 4PM meds.

Ever.

Tomorrow is supposed to be 43 degrees. The ice will melt for real this time. At least for a little while. Forty-three is almost within my range of workable environmental temps for ultimate body operation. I have determined, via a very scientific method (not) that ideal temperature to be between 45 and 55 degree Fahrenheit.

I will set myself an alarm on my phone as a reminder to never, ever again forget my 4PM meds.

I survived the icy, cold outside world on this day by the (sheep) skin of my damn black Uggs! But, it was worth it. I love Vietnamese food.

Remembering to say…for now, for today, for the moment

Sometimes, I forget to make the best of (sh)it.

I think I’ve had my first bout of actual writer’s block. It’s been almost two weeks since my last post and while this bothers me intensely, I think it might also mean that I’ve found some new ways of coping. So, yay me?

Kind of.

The thing that keeps occurring to me, this past week, is how hard it is to roll with whatever is happening in this moment. Right now. At THIS time.

For example, as I wrote in my last post, I’d discovered a new way to manage my pain. That’s been a huge change for me, an astronomical shift in how I can get through the pain of every day life with MS. Here’s the thing, though.

You still have shitty days. I still have shitty days.

I literally can’t rely on myself from day-to-day. And by myself, I mean my body. For the most part, my mind seems to remain mostly intact so there’s that. Thank the universe for that. But my body? My body is fickle.

Some days I feel so good it’s almost like I’m inching closer to pre-MS me. I am talkative. I find myself laughing. I sleep soundly and wake up feeling almost ok. When those days happen (and they don’t happen that often), I have to force myself to not go flying over the rainbow on my glitter unicorn singing, “IT’S OVER! IT’S OVER! I’M GONNA BE OK!” Because chances are within 24 hours, or even less, I’m going to feel completely differently and wonder where the good went again (I’m a bit obsessed with Tegan & Sara, but you guys already knew that).

Some days, I am halfway up the stairs to my second floor before I remember to hold on. Other times I go to stand up from sitting and my body literally won’t budge. Some days I wake up in the morning before my alarm and I don’t feel like I need 10 more hours of sleep. Other days I wake up and feel like sleep was a big fat freaking lie and I cannot conceive of getting out of bed. Some days my legs operate as legs should, for the most part, and I find myself feeling silly for walking with Stan (my cane, my one and only man) because he’s become somewhat irrelevant (kind of like some of my last boyfriends). Other days, I lean on him like my life depends on him. And sometimes it does.

Sometimes these changes don’t even take an entire day. Sometimes things change moment to moment.

When I was diagnosed with relapsing/remitting multiple sclerosis, I thought the spans of times when I would be either relapsing or remitting would be big long times. Weeks at least. Months even! I was led to believe that I’d have symptoms at times, at other times they would be worse, but I’d eventually level off again and get back to “normal.” Remitting means “cancel or refrain from exacting or inflicting (a debt or punishment).” Canceling or refraining is not what I’m experiencing. Waxing and waning maybe? Always on until it’s off? Firmly off before it snaps back on again without warning?

“Relapsing and remitting” might be the most deceptive term I’ve ever come across related to a medical diagnosis. It should be called “Constantly Changing and Keeping You Completely Off Balance MS” but I think CCAKYCOBMS doesn’t roll off the tongue so well, so they voted against it when choosing MS names.

The thing is, there is no normal anymore. One cannot become “accustomed” to having multiple sclerosis because one cannot ever get used to any one thing.

I’ve been thinking about this a lot lately because my MS friends and I have been riding the roller coaster together. We text. We message. We talk online. We talk a lot and thank god for that because damn, it feels good to be 100% understood.

The day usually starts with “what kind of day is it for you today?”  Sometimes the answer is, “eh, not so bad.” Other times, the answer is, “Woke up with non-functioning legs.” Or, “Took a fall, feeling crappy, here we go again.” Or something similar.

We always forget to say “for now.”

Because it could be hours, days or weeks until your current state changes again or it could be minutes. This works in both directions, good and bad. Some days I wake up thinking I can’t. I just can’t do anything. Hours later, I’m grocery shopping and things don’t feel all that bad with a cart to hang on to. Other days I wake up thinking, I can and wind up flat on my face with dishes flying through the air and a purple-ish bruise blooming across my nose. You just never freaking know!

It’s a challenging way to live. My entire life is supposed to follow a schedule of some kind. I’m employed full time running a business. Meetings are a perfect example.

I used to plan meetings and feel nearly 100% confident that I’d be able to be where I needed to be when I needed to be there. I’m a reliable kind of gal. I like to do what I say I’m going to do. Consistently. Period. Now? Chances are 50/50 at best. I’ve nearly killed myself trying to keep to some kind of regular work schedule, in some kind of reliable way (either in the office or not in the office) but the fact is, I have to roll with what my body can handle on any given day and that’s just how life is now.

I might want to be there in person, but you might also get my tinny voice on a conference line instead. I might want to plan a trip to the home office to spend some much needed time with my colleagues down south – but I can’t tell the airlines I may or may not be able to make my flight and I won’t know until I’m walking out the door which it will be! I can’t tell my colleagues I may or may not be coming to see them in person, so just hang tight and free up some time for me just in case, because that’s not how the business world works!

But it’s how my world works. Thank the universe, once again, that I’ve somehow had two of the best years of my professional life these past two years since I was diagnosed with MS. The universe has a perverse sense of humor. But the constant threat of “what if I can’t?” takes a toll on us. Being a person with MS means never getting to really plan a goddamn thing.

The obvious up side to all of this is that we have to constantly remember, or rely on one of those trusty fellow MS buddies to remind you that whatever it is that feels so horrible now probably won’t always feel so horrible. It might last months (like after my first big relapse) and you might even start to get used to your new limitations, when all of the sudden something changes. You feel better. Or you just feel different. You will never see it coming but you can rely on one thing. It will change.

Sometimes I laugh to myself and think that MS is trying to teach me the secret to inner peace by proving to me that all we ever have in life is right  now.

Just as I type those words I got another right now but I might not have. I, of all people, should know that fact from my experience with young widowhood. But you forget! Time passes by and you start to feel normal again and you allow yourself to believe that there is such a thing as normal! You find yourself falling into a new routine and thinking it’s real but it never really is.

It is all about to change (or not) at any given second of any given hour in any given day (and so on and so on and so on). Or not.

It’s a universal truth and it’s universally ignored because there is truly no easy way to live without holding on to the delusion of control and remain a functioning member of our society that is built on plans, expectations, commitments and other silly things that are absolutely meaningless to me now.

I try to remind my friends (and at the same time myself), when we’re having shitty horrible terrible MS days that we have to remember to say to ourselves, “This really sucks balls…for now.” Or, “Fuck this…at this moment.” Or, “I love feeling so awesome…today.” Because good or bad, you kind of can’t count on any of it. And you have to be ok with that. Otherwise, you will straight up be in misery every day of your life and who the heck wants to live in misery?

I have to tell you…not me.

I’ve nearly gotten to the limits of my ability to wallow in misery. I’m sure you’ve all been waiting for me to reach that place, finally, and stop bitching constantly about how much I hate this entire experience! I was beginning to be concerned it would never happen myself. But there is a limit on how long you can feel hopeless and still find the energy to wake up each morning and play along. There is for me, anyway.

Reminding myself to put a shiny pink bow on a shit sandwich is important. It’s all gonna change! It’s not worth the energy it takes to believe any of it will last forever – now that could be your crappy legs, the rainy day or the month of January that seems without end. But it always comes to an end. And something new begins.

Now I’m not going so far into my commitment to misery-free living as to think I’m going to have more good moments than bad ones from now on. My experience of the last 24 months has not proven that to be the case. It’s just not true.

Yet. It’s just not true YET.

The search for peace (or pain relief…I’m not picky)

It’s been a little more than two full years since I was officially diagnosed with multiple sclerosis on December 1, 2015.

The contents of this entire blog are a summation of my struggle to accept or even understand what that information actually meant for me and serve as a kind of proof that this crazy shit is actually really happening. Let’s face it. These have been two rather shitty years. I got my diagnosis. I began to go downhill. It made me wonder if the mere function of knowing somehow made my body kick into disability mode. Like ignorance was my friend, and now that I was enlightened, my body was throwing a disease party and my entire central nervous system was invited.

Limbs were useless. Fatigue made me a living zombie. I learned, for the first time in my life, what real anxiety feels like. I changed into a completely different person almost over night. I stopped recognizing myself when I looked in the mirror. I stopped going out at night almost entirely. It was just all too hard. All of it. All of the life I had before December 1, 2015 became too fucking hard.

You guys already know all of that, but it’s important to understand the mental affects this disease unleashed on me to understand why these last few weeks have felt so downright amazing.

Formerly outgoing, see-and-be-seen Beth, the girl who could handle anything turned into home-bound, never-want-to-be-seen Beth who lived in mortal fear of somehow not being able to think let alone walk. Sometimes this was a physical thing. Most of the time if was a physical thing but I’d been ignoring the entire mental side of what was happening. I tried and failed to look at the bright side. I swung back and forth between dire despair and insane denial. Cheryl, my therapist, and me just keep reassuring each other that we just had to believe it would get better. We just had to.

Then the pain started.

I was just getting back on my feet after the Great Relapse of Summer 2017 (I call it that in my mind, like a title of a movie), when I was trying to get back into some kind of routine with my life. Getting myself to the office at least a few days a week. Trying to function. Trying to try harder. In the middle of all of that, I started to feel this intense fire in my body. I’d never felt anything like it before. I think I have a fairly high tolerance for pain, but this was something different.

I would feel it creeping up my spine around 3PM while I was sitting at my desk. I would begin to feel desperate knowing where it was heading. I knew I could rely on Sandy, my BFF who also happens to work with me, to help me get to my car but then I had to get in my house, do my daily cat chores. Get myself to bed. The mere physical effort it took to get me out of my house and to another location rendered me basically useless because my body was riddled with fire. I got a fancy new ergonomic chair! It’s amazingly comfortable but it didn’t help with this newfound pain.

I’d drag myself home. Drag myself up and down and down and up a bunch of stairs. I’d lay in bed in tears, my entire body on fire from the base of my skull to the bottoms of my feet to my fingertips. I was eating 800mg of Ibruprofen every four hours or so (way too much). It didn’t help me even a little bit. I’d start to think about how the next day was likely going to be more of the same. It was becoming pretty consistent. Sometimes I woke up in the morning with the pain already in full force.

I was starting to feel desperate. If living any kind of “normal” life led to this kind of pain, I was beginning to panic. How could I do this? I do pretty well acting normal in the real world, but I’m not that great of a pretender! I was toying with the idea of asking The Great Scott if there was something I could take for pain.

The minute that thought crossed my mind I shuddered. NO MORE DRUGS. Those words echoed in my head. I cannot take a single additional prescription medication. I mean, there has to be some point of diminishing returns, right? I take so, so many meds. I’d list them here but you’d probably have a hard time believing it. Also, pain medication just scares me. I’m definitely the type of person who would be inclined to abuse medication like that. If one pill helps, I bet two pills help so much more! I just know myself. It’s not a good idea.

I started to feel pretty dark. I think you could probably tell from the posts throughout 2017. I tried to keep my humor about me. I always reminded myself that there are people who have it so much worse than I do. That I should be grateful every minute of every day. Thinking those very true things didn’t really help much. Knowing other people are suffering doesn’t make your pain go away when your pain is a physical, menacing presence like a fire burning inside your skin that nobody can see but it feels like it might consume you. It just doesn’t help.

Friends I’d made online suggested to me that I consider trying cannabis for my pain.

I mean, I’ve read and researched a ton about this possibility and I truly believed it had merit. I already used some homemade cannabis edibles to help me sleep at night (I will never reveal where I get them but suffice to say, the person who makes them for me is a literal angel on earth).

Then there’s that one small detail I couldn’t get around. Cannabis isn’t legal here in Pennsylvania. I know we’re in the process of legalizing medical cannabis but that’s a process that takes a lot of time. I’d heard a bit about how hard it was to not only get the card you need to become a patient but then to get supplies from a very limited number of dispensaries. Oh. Also, as you might suspect, The Great Scott (my MS specialist) is 100% against medical MMJ across the board. Shocker.

But there is more to this struggle than those very factual, legal hurdles.

There is the fact, proven over 50+ years of life, that I freaking hate weed. I hate how it makes me feel. I hate how it smells. I hate smoking anything (except for that very short spurt with menthol ultra lights in my thirties when I was drinking my face off five nights a week…that was fun). I found weed basically repellent. It had a terrible effect on me.

It used to be a thing between my husband and I, when he was alive, because he smoked pot every day of his life. He knew I hated it but not because of any ethical or moral reason but simply for the fact that as soon as he took one hit of a joint he instantly became repellent to me. I can remember telling him, “You know, they call that shit dope for a reason. Gross.” And he would laugh and laugh. But I digress. Suffice to say, me and marijuana are not friends. I couldn’t really see it becoming a fundamental part of my life.

I watched how much it was helping some of my MS’er friends. Meg, in particular, inspired me. Watching her joyful face as she chronicled her daily walks on Instagram – noting that this new found joy for walking had been something she feared she lost forever! But not anymore. Meg credits cannabis with giving her her life back. You should read Meg’s blog. She knows so much more about medical MMJ and MS than I could ever share here. Check it out. But the smile on Meg’s face was making me really happy and haunting me all at the same time. I wanted to smile again. I wanted to smile again without the smile feeling like an internal grimace.

I remember telling some of my MS friends, “I wish I could get the benefit of the relief without the high! I’d do that in an instant.” Um. Guess what?

You totally can!

We’ll stop here and I’ll admit that I’m not entirely comfortable writing about this. I haven’t told many non-MS friends about this. It makes me feel funny – even though I’m doing something completely legal and non-psychoactive, it still bothers me. I haven’t broken this news to my mom or members of my family. I’ve told my closest friends, the ones I trust the most, but I’m not sure why this feels like such a dirty little secret.

I’ve been using CBD to relieve my pain and it’s hard for me to admit this in writing but it’s starting to really change me in all the very best ways. I started this whole exploration looking for relief from the pain and I indeed found that relief.

But I got a lot more too. Let’s start at the beginning.

I started with CBD oil from CW Hemp in Colorado. I had seen a story about these guys on CBS Sunday Morning years ago. Here’s a link to an excerpt from a CNN documentary that tells the story of Charlotte. This kid was having 300 seizures a week. The story is heartbreaking but it had a very interesting and happy ending. The CBD oil made by the Stanley Brothers in Colorado changed Charlotte’s life (hence the name of their company in her honor). It was worth squirting some pricey, nasty tasting oil under my tongue a few times a day to see if it could help my pain. AND IT DID. It took a while to come over me, but about a half hour after taking the oil, I felt the pain get quiet. It didn’t disappear immediately, but it got better. I started with their “everyday” product but it wasn’t strong enough for me. I progressed quickly to “everyday advanced” and that was much better.

Better was enough for me to dive into more research.

I discovered that for my kind of pain, the degree and severity, ingesting CBD oil is not the most effective way to get the Cannabidiol into your blood stream. By the time the oil is ingested and processed in your digestive system, through your liver etc. it’s down to something like 15% CBD. I’m fudging numbers here a bit but the reduction in concentration was distinct. I had to find another way to get the cannabidiols into my system without using the oil as the mechanism so the cannabidiol concentration would be higher.

This led me to another (100% legal) product called CBD shatter. Shatter is crumbly. A clear solid that breaks up into little pieces. To get the CBD into your blood stream most directly, I had to get a vape pen to use with it. Here was another hurdle! I know I had that short stint as a smoker in my thirties but it sucked. Literally. I hate smoking anything. I know I’m vaping (not technically smoking) but it feels essentially the same to me. I inhale vapor that comes from heating the CBD shatter in my vape pen. It looks very much like “dabbing” weed concentrates – but this is devoid of THC so there’s no psychotropic effect. I had been really skeptical about that so when it turned out not to get me high, I was super relieved. I found another form of even more highly concentrated CBD in the form of a wax.

Here’s the thing…I will share info with anyone that wants it in messages or emails, but I don’t want to do that here. I’m obviously  not a doctor nor an expert on anything related to CBD vaping. But I am here to tell you that I’ve felt happy for the first time in a months these past few weeks. I haven’t thought about taking a pain medication of any kind in over a month. I was buying Advil liqui-gels in bulk! Not anymore.

There was an even better after-effect of my new practice. That constant churn in my head. The fear that nothing will ever be the same. The constant “what ifs” that fly around my head quite literally 24 hours a day, even finding their way into my dreams. The ever present and sometimes crippling anxiety about what my future could hold…it’s quiet. It’s so very quiet.

That anxiety voice is still there, I know it is. It will probably never go away completely. I mean, when you have a disease that is chronic and degenerative that’s kind of the deal. Especially one as unpredictable as MS where literally things can change from day-to-day, even minute-to-minute. Having that yoke hanging around your very unstylish neck is a difficult business. Things that make that voice quiet have eluded me completely. And I’m a therapy expert! Ask Cheryl.

CBD vaping is helping me. It’s helping me a lot. I hate doing it. It still feels wrong to me even though I know it’s not. I hate how it tastes (some people actually love it! Go figure.). But I’m doing it three to four times a day to help me maintain my calm, quiet mind. To help me keep the fire in my body at bay. Even to help me loosen up these ridiculously spastic muscles that prevent me from moving around in a more natural way. It helps…nearly everything.

So there you have it. My dirty little secret. It’s really not dirty at all! I wish I knew why I’m so judgey! Mostly of myself. Maybe Cheryl will cure me of that some day but until then, I’m just trying to learn to accept things as they are.

And yes, I will be discussing this entire development with The Great Scott and I am already steeling myself for the medical debate that will surely ensue.

But here’s the thing. I’m on the mac daddy of MS drugs right now (Ocrevus). It’s not been the life changing experience I had been told it would be. It’s been just…meh. If something else helps me want to open my eyes every day, maybe leave the house a bit more, embrace the damn cane (sorry Stanley) and perhaps shower a little more often? I’m down with that. In all of my research I can find very little down side to vaping CBD. I’ve experienced exactly zero side effects. None.

It might not work forever. So I’m going to enjoy it while it lasts. I’m going to deal with the fact that I can’t really carry it around with me – it might be legal but it doesn’t LOOK legal – so I can only be pain free for several hour intervals but hell, that’s more than I had before! I’ll take it.

I feel like that little tree, up there in the picture, a lot of the time.

I try to keep things light and airy but I don’t often feel light or airy. I make the jokes and brush off the badness. But I feel dark and alone so much more of the time (even while surrounded by people who love me, both near and far).

A little ray of light seeping in is most welcome! Even if I have to suck it in through my lungs. I’d eat rocks right now if someone told me they’d make me feel better. You can bet on that.

New year…new me?

My new/old obsessions.

I’ve had a lot of time to think this holiday season since I took some left-over vacation days at the end of the year to allow myself to actually rest instead of just “pretend resting” which is what happens when I am working. When I’m working, I never turn off even after actual work hours because I’m too afraid of falling behind. When I’m really and truly off work, my constantly churning brain allows itself to slow down a bit. This only happens on those rare occasions when I’m off and my entire company and most of my clients are off too. Our offices close the week between Christmas and New Year’s Day. It’s like the best gift anyone could give us. Time off when everyone else is off too! Brilliant.

It’s all over now, the holidays are past and life goes back to normal for normals and back to something else for us non-normals. But while I was in that holiday limbo, I got to thinking about lots of things. One of those things I thought about was putting some serious effort toward finding my lost joy.

You guys won’t be surprised to hear that I’ve had a hard time this year thinking about anything but how horrid this disease is and how it was more or less ruining my life. It crept into every corner of my life, every hidden nook and cranny, before I knew it, it had become everything. Everything in my life was tainted by MS. I let it happen, sure, but I think we all find ourselves there sometime when the lows get really low, lower than you thought they could go.

Your ever shrinking list of goals gets smaller and smaller. At one point, my only goal was pretty simple. REMAIN EMPLOYED. All efforts were focused on that goal because it is the foundation of everything else in my newly complicated life. My first goal was to function with limited travel (my HQ is in Atlanta, my job often requires in person meetings with clients not in Pittsburgh). I told myself it was no big deal and I could make things happen from my office in Pittsburgh no matter what it took. Then that stopped working – my new office created new problems. I had to cross the street (harder than one would think while dizzy). I had to get myself to the office but then once I was there I was good for nothing because I was so exhausted by the time I arrived, it felt sometimes like my brain stopped working (to say nothing of my body). That isn’t good. I get paid for my brain. I had to think of another plan. Again.

I decided to do my best to keep things moving, rolling and functioning but I would try to do that from my home office instead of my actual office. My body didn’t work so well but my brain still does! I could do what I do without putting my life at risk crossing the damn street. The only way this would work is for me to make 150% more effort to make sure I stay involved, relevant, impactful and useful. I had to build relationships over the phone – not as easy as actual face-to-face interaction. I had to support behind the scenes (direct, tweak, re-focus, support) to enable others to do what I couldn’t do. It works, it really works, but holy crap is it tiring. By the time I got to the extensive holiday time off I had planned (a little over two weeks off) I was depleted. I looked back at the last six months and felt very demoralized.

This didn’t leave much time for joy. I couldn’t remember what made me happy. I couldn’t remember the last time I felt actual happiness. I didn’t want to admit it to myself. I thought surely, this too, is normal and I just need to ride it out until happiness comes back some day! But maybe that wasn’t right. Maybe they were right.

“They” were two people, primarily, that I interacted with over holiday break.

The first was a woman on the internet. She read my Christmas blog and took the time to comment on the post. Her approach was new to me – I haven’t gotten much negative push back on my writing so far, mainly because I think I attract like-minded MS’ers. I try to find people who aren’t motivated by what I call the “sunshine and roses” blogs – “the MS-doesn’t-have-me” crowd. I know that whole thing works wonders for many people, but I think it’s obvious that this disease took me to some places where thinking on the bright side became impossible.

The woman commented on my blog and said (I’m paraphrasing here) that my real problem was that I always think negatively and I feel sorry for myself. She told me, with all good intentions I believe, to always remember that there is someone out there who has it worse than me. Huh. OK. I thought on that a minute or two, debating a few snappy come backs, and eventually decided to leave it be. Her intentions were good. I knew that. This is the price I pay for putting so much of my emotional baggage out there for the world to read! I let it go.

But it nagged at me. I wanted to explain to her that I knew what she said was probably true, and yet focusing on people much worse off than myself as a means to make myself feel more positive didn’t really work for me. It gives me no joy to think about how bad other people have it. In fact, it makes me even more sad. I want to fix things for all of those people. I want to make them better. And I can’t. So it’s just not that easy for me. Not yet anyway.

Later in the week, another interaction, this time a positive one, got me thinking about my approach to my lost joy again.

We had a post-Christmas get together with some dear, dear family friends. My mother’s friend Norma from childhood has two daughters and a son who have been part of my life for literally my entire life. As we got older we got closer and our moms remain dear friends to this day. We have an annual holiday get together that we call MMDDSS (or “mother mother daughter daughter sister sister) usually hosted at one of our homes, usually involving much laughter and a most excellent white elephant gift exchange. You may remember it as the night I stayed out past midnight! Of course I had to post that accomplishment on Facebook based on it’s sheer remarkable wonder.

My sister is a fan of tradition. She has always been the one that holds all of our family traditions together to the point where I jokingly refer to her as Tevya (Fiddler on the Roof? Anyone?). This year at MMDDSS, my sister wanted to start a new tradition. The thing is, we’ve all had some pretty shitty things go down in our lives this year. Our mothers both lost their husbands. We’ve all had relationship challenges, health challenges, challenges on challenges you could say and we all felt kind of over 2017.

My sister’s new tradition idea was inspired by the notion of people using sage to rid their environments and their lives of bad juju. Saging, or smudging, is a way to remove negative energy from your space and essentially your life. My sister’s plan was that each of us would write down the things that sucked about our 2017 on a sheet of paper. We would sprinkle our sheets with sage, fold them up and toss them in the raging fire in my sister’s living room. By doing this, we would ensure more positive energy for 2018.

I loved the idea but it stumped me too. My struggle was showing on my face…My mom’s friend looked at me and said, “You could probably write just two letters on your sheet to cover a whole lot of things, right?” And she was right. I was stumped because throwing my saged sheet into the fire couldn’t really change a goddamn thing about me having MS. I got a little twisted up trying to generate some actual positive thinking but I wrote my list and I sprinkled my list like everyone else. Actually, we sprinkled our lists with oregano since my sister didn’t have any sage, but as Italians we talked ourselves into the idea that oregano is probably good enough to erase our negative Italian juju. So oregano it would be!

I had a great night that night. Not physically. I felt like crap physically and I was worried I’d put a downer on the entire gathering by having to bust out early or sitting in a corner scowling like I usually do at holiday parties. But I did neither. I rode the wave of the laughter surrounded by people I love and I had a really good time. I felt happy. I thought I was just playing along, throwing my list into the fire, but it worked. I found myself vowing to try harder to feel happy more often. I vowed to try harder. I might not be able to rid my life of negative energy with a bit of oregano on a list thrown in the fire but I could try to change the way I think.

I’ve tried a couple of things to make it happen, some of them (photo above) are presents to me. Little things that make my life easier or that give me some kind of small happiness – whether big or small. I procured myself a little pile of happiness in the mail (presents for me! hooray!) and I remembered what it was that I used to love about my quiet, rather solitary life…

First, a new pillow. I am physically not able to resist advertising for the perfect pillow. I’ve tried them all. I’ve bought them, slept on them and subsequently stacked them in a closet when I eventually hated them. And yet, I still succumb to the idea of the perfect pillow that will lead to pain-free sleep.

This time, I bought myself a Talalay pillow. I would make 2018 the year of comfort, just like the ad said! You might think that I would be immune to outrageous claims in ads, what with being an advertising professional myself, but you would be wrong. I am the ideal target for these kinds of claims. I cannot resist them. The pile of supposed perfect pillows in my linen closet are proof of that! Talalay was going to be my ticket to a year of comfort delivered directly to my front porch.

Next…I might not dress fancy or work very hard on my “look” like I used to with glamorous makeup and high-effort fashion but I love to smell good. Smells make me happy. One in particular is as close to perfect to me as a smell can get. A small whiff makes me feel happy. People ask me all of the time what scent I’m wearing. Sometimes, in elevators, people tell me I smell like cookies. I mean, this might mean I use way too much perfume on the one hand but on the other hand, who doesn’t want to smell like cookies? Exactly.

Vanilla-based perfumes make me happy. I scour the web to find the best of the best. I use perfume every day – even when I don’t leave the house. It’s not for anyone else. It just makes me happy. I got myself two new ones to try, pictured above, at my favorite perfumery Lucky Scent. They sent me a bunch of little new vanilla perfume samples in the box, too, so it’s like a double dose of happy.

My next love to come in a box was from Barnes & Noble. You guys know I’m a huge reader. When I was dizzy all of the time late in 2017, watching TV made me nauseous. I was stuck in the house. A lot. But TV and computer work made my head swim so I dove into books even heavier than usual. In 2016, when I started to spend a lot more time at home after diagnosis, I challenged myself to see how many books I could read in a year. I read 30 books that year.

My goal in 2017 was to beat that total and with the health year I’ve had, it was pretty easy. I read a LOT. My grand total for 2017 was 35 books. I’m looking to beat that again in 2018. Since I’m a lover of actual books, a new stack like this gives me actual joy. Reading can go back to making me happy now, if I let it. It’s not going to be that thing I do because I can’t do anything else…it’s gonna be the thing I do because I freaking love to read. Thinking = changed. Boom.

The little item in the front, the magnetic mirror tag for my handicapped car placard was inspired by my friend Kara’s post on one of the MS Facebook pages I follow. I’m always worrying about ripping my placard. It’s crazy! I know. I pull it off and put it on a bunch of times in a day and it gives me actual anxiety. I can’t stop thinking about what I would have to do to get a new one should mine get destroyed. Yeah. This is a good example of my over-active brain over-thinking every little thing about every single action in every single day. A magnetic, plastic handi-capped placard holder? Why, yes, yes I will thank you. One less anxiety in my life for a mere $11.95!  It totally counts. Not all joys are big joys. They still count.

Next, there is my begrudging acceptance of the Ugg boot. The poster-shoe of basic bitches everywhere (those pumpkin spice latte loving, velour sweat pants with a word across the ass wearing girls with bouncy pony tails in colorful scrunchies and big hoop earrings). The Ugg short boot, is an eternal and likely permanent force in my life. I have denigrated the Ugg boot every time I wear them. They’re so…ugly. They’re so…NOT fashiony. They are so…for people who’ve given up on life and don’t care enough about their footwear, thinks Old Me. (I also love sweat pants and hoop earrings so I’m a total hypocrite, too.)

Guess what? Uggs are horrid but they are also comfortable, flat, furry and freaking warm as hell during a bomb cyclone. My black Uggs have seen better days so I got myself a new pair. I still don’t have a slogan across my ass, but I wear the crap out of my Uggs so I got myself a pair with bows on them. Bows make me happy! Even if nobody ever sees them. I see them.

I know you can’t buy happiness. I know that joy cannot come in a box. What this is really about is me giving myself permission to stop being so judgemental about what and how I should be living my life. I’m going to try and stop beating the joy out of every aspect of my existence.

I will smell good. Be comfortable. Read many books and protect my placard. It’s not much. But it’s a start.

P.S. I didn’t love the damn pillow. My eternal quest for the perfect pillow goes on! I will not be thwarted.

Tegan & Sara, concentric circles and failed resolutions

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.”

Like everyone else in the world at this particular time on this particular night of the year, I’m sitting here on this last night of 2017 wondering which resolution I will fail to achieve this year (last year’s was so good! And also a dismal failure…it made for a great blog post, but it never did stick).

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.

A very bright and dark Christmas

Some of my favorite memories of this very bright and dark Christmas holiday.

I’m sure it will come as no surprise to any of my readers that I was not looking forward to the Christmas holidays this year.

I mean, I’m not terribly subtle for one thing. I’ve been quite outspoken about the open struggle that has been my 2017. It seems like this year, that was supposed to have the promise of a new miracle treatment and a new lease on life for Bethybright, has been one disaster after another. I’ve gone downhill so fast, its left me dizzy. I can count on one hand the number of truly good days I’ve had since going off of Tysabri in January 2017. This Christmas was going to be the one when I could look back on the time that has passed since I was diagnosed just before Christmas in 2015 and say to myself, “Wow, these past few years have really sucked but it was all worth it because now I feel so much better and I feel hopeful for the first time in a really long time!”

Yeah. Or not?

Christmas is usually one of my most favorite things. But like many of my reliable favorite things of the past, it’s complicated now. Just like everything is complicated now.  I want to feel festive. I want to help with preparations. I want to enjoy time with those I love most but the simple truth is that just the act of leaving my damn house is a major issue these days and it’s really starting to get old.

It snowed on Christmas eve. I woke up to a white Christmas morning and it was beautiful and lovely and quiet. I lay in bed snuggly warm enjoying the simple pleasure of the overnight snow outside, the warmth inside, a cozy bed warmed by four furry creatures who are generous enough to share their body warmth with me. It was early, really early because that’s when those furballs wake me to be fed so I got myself out of bed, down the stairs and fed the kitties. Scooped litter downstairs and before heading back up to bed for a little longer to rest up for the festivities ahead, I peeked out the front door to look at the pretty snow.

I noticed, the lid had flown off of my tub of ice melt on the front porch. I  opened the door thinking I better get out there and put the lid back on before the thing blew away when I noticed that my front porch looked shiny. It was a solid sheet of ice, rippled, like tiny frozen waves, made by wind that blew through the night. I gingerly stepped outside in my outside slippers, carefully grabbed the ice melt bucket lid, very slowly tossing some ice melt across the porch and down the steps to my sidewalk below, shivering all the while because I’m still in my pajamas. I crunched back to the front door being a little less in mortal fear for my life and went back to bed.

It dawned on me, though, that I wasn’t going to be able to drive myself and my mom’s to my sister’s house where Christmas day brunch was to take place. My sister lives high atop the world’s steepest driveway, affectionately dubbed Mt. Doom. Any snow at all makes the approach to my sister’s house nearly impossible without 4-wheel drive. I was supposed to pick up my mother and head up to my sister’s but I knew if it was icy at my house, it was definitely icy at my mother’s house. I realized that I’d be basically of no help whatsoever for getting my 77 year old mother from her house to my car while also carrying the homemade danish pastry she had to bring to the brunch, across sidewalks made of ice. The truth is, my mother is almost more capable than I am but neither of us should be out traipsing around on icy sidewalks.

Change of plans. We needed transport. My sister has a Suburu that would have no trouble getting us up Mt. Doom, safely and with the precious danish pastries intact. Alex, my nephew, came to pick us up and get us safely to the Christmas feast. All good! Disaster averted. Having an amazing family willing to drop everything to make things easy for you is kind of awesome. And yet, there I was sitting in my funk, thinking to myself how much I hated the entire situation.

Something as simple as the weather can fuck up my entire day. I’m so unsteady on my feet that even a little snow or ice renders me basically useless. When it’s too hot, I can’t function. When it’s too cold, I can’t function. Low-key stress-free holiday fun all delivered without my help or support should have been perfect (and in many ways it was) but it bugged me that I wasn’t able to help with any preparations at all. I didn’t hang one single ornament or bake a single cookie. I didn’t do more than wash a few dishes, and barely a few. I did nothing. Nobody asked me to do anything, of course, because they all know that it will probably be too much for me whatever the ask might be. Hell. My only job was to get my mother to the brunch and I couldn’t even do that because I needed help my damn self.

Earlier in the week, I had a hair cut appointment in a busy part of town during the holidays. I was feeling ok that day, not great but not terrible (otherwise known as my general state of being), so I headed out not at all worried about the task. How much easier can it get? Drive to the salon. Park. Get into the salon. Sit. The end.

But it was the Friday before Christmas so people were everywhere  scurrying about getting last minute gifts or meeting friends for festive holiday drinks, doing what normal people do during the holidays. I couldn’t get a parking spot in front of the salon like I normally do. The only handicapped spot on the street was an entire block away but it was my only option. I hadn’t brought Stanley, my cane, because I’m still not accustomed to the fact that I’m likely to need him if I have to walk any distance at all. I stumbled the one block to the salon. I was dizzy and shaky. I could see people looking at me drunk walking down Butler Street trying to pass me because I was moving so slow I was barely moving at all, feet occasionally dragging. I made it to the salon but I was on my last legs. I knew I had to repeat the whole thing in the opposite direction again once my haircut was over. I sat there wishing my hair cut could take longer. I didn’t want to go back out there again. I felt so far away from safety. It was unnerving. Safety was literally less than a block away.

I love that people make things easy for me. From work colleagues to family members to friends and neighbors – I am surrounded by people who want to help make things easier for me. I am truly #blessed (and I’m not even being remotely ironic this time). I just want so badly to go back to being useful, a helpful, fixer of problems, solver of challenges, someone my people can count on. Not someone who my people need to worry about, cater to, work around.

It strikes me over and over again over this holiday break how my mother and I are oddly in the same boat though we are nearly 30 years apart in age. Neither of us can do what we want to do all of the time. Both of us move pretty slow because both of us are likely in some kind of pain. Both of us want to be able to do more and we’re both pissed off at the world about our current circumstances. My mother, a new widow learning to live on her own for the first time in almost 60 years and me, the 50 year old woman who woke up one morning feeling more like 75, has been consumed with anger every minute of every day since.

I want to have an answer when someone I love asks me, “What’s new?” My answer this year was probably better kept to myself but instead when my niece asked me that very question yesterday at Christmas brunch my answer came spewing out of it’s own accord, “Oh, you know. Not leaving my house a whole lot. Different body parts stop working every day. I haven’t showered in almost a week and I haven’t been around actual human people in weeks. I didn’t bother putting on makeup today because I knew I’d be too tired when I finally got home later to take it off. I look like a fatter, older, uglier version of who I used to be…so. I guess that’s what’s new.”

Geez. That was a lot. Nobody deserves that but there you have it. It’s very possible I should keep those kinds of responses to myself. They slip out. As if they demand to be heard and acknowledged. As if doing that might take their power away. Saying things out loud makes them not as scary, right? Not always, as it turns out.

Every year on Christmas morning before I head out to my family’s annual brunch, I watch A Christmas Carol alone at home in my jammies with a cup of coffee. I like the George C. Scott Scrooge the best. I cued up the movie on demand and enjoyed it again this year. It hit me about halfway through. I’ve been visited nightly by my ghosts of Christmases past, present and future and I want to be a changed woman much like Ebeneezer. Alas, I just keep being visited by the very same ghosts over and over and over again. Like they’re lost or caught in some kind of loop where everything bad is on repeat. And I keep waking up broken, slow, pained and angry.

My family went out of their way to make this first Christmas after my father’s death as good and happy as it could be. I am literally in awe of what my sister is capable of doing. She puts up like 5 Christmas trees! Thank goodness because I haven’t put one up in almost 14 years. My mom kicked butt too with her cooking, preparing, and generally doing more than any recently widowed woman should. My nephew Alex continues to be amazingly helpful and a source of actual joy. That kid is hilarious. Everyone was a joy to be around. I am so very lucky I am ashamed by how much I hate this entire experience. I want it to be over. It will never be over.

My mom had a tough time this holiday season. It broke my heart. It broke my heart even more to know that I am yet another thing she will continue to worry about. I am another reason why her mind can’t be at peace.

I had a wonderful Christmas. I really did and I am deeply grateful for all that I have and for the wonderful people I am surrounded by (including all of you, my readers). Yet, I am simultaneously also grieving. I’m grieving for my mother but I’m also grieving for myself. I’m grieving for what I lost, which feels like most of me, things I can never get back. I’m not sure what to do with that reality.

So, yeah. I’m a big holiday downer with a side of desperation. I have a trip to make for work in late January. I have literally no idea in the world how I’m going to make it happen. It’s lurking back there in my mind taunting me, telling me I can’t expect people to be patient with me forever. Hell, I’m not even patient with me! When am I going to finally wake up and laugh about this horrible dream I’ve been having?

When will I finally stop being so angry? 2018…you’re facing a lot of pressure. 2017 set the bar pretty damn low. Don’t let a girl down, 2018, ok? Don’t let a girl down.

I got a new foot for Stanley

That’s me. Doing what I do best. Thinking too much.

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.

Been there, done that (and I’m so grateful)

You have. Not me. And I’m so grateful for the wisdom.

Here’s the thing.

We call multiple sclerosis a snowflake disease and with good reason. MS is never the same for any two people. Things that are major issues for me, may not affect your friend who has MS at all. And I will be the first one to tell you to shut your damn pie hole when you tell me about your cousin’s friend’s grandmother who runs marathons with MS because…just shut it. We can still be friends that way. But I digress.

Things that have never gone wonky for me, may drive you crazy on the daily. There are many symptoms I haven’t yet had the pleasure to meet. And no. I’m not stupid enough to actually write down a symptom I do NOT have. That’s terrible MS karma and I’ve fallen victim to it before. Fool me once! You know how that goes.

The thing that amazes me lately, though, is not how unique and special my disease might be but how utterly normal and mundane my MS is in almost every way. The problem is that nobody of the medical professional variety has ever told me, warned me, or talked to me at all about some of the weirder things that can happen, therefore I spend a lot of time with this soundtrack flying around in my mind…

“Is it MS if I’m in pain all of the time? Is it a muscle pain or a nerve pain? When I put my head down and get that tingly feeling down my spine, is that my MS? It’s not a pain, it’s more like a tingle, but people call it pain and I don’t call it pain, so maybe it’s something else entirely…Is it crazy that (fill in the blank) is happening to me or is it just my MS? WHY WON’T ANYBODY TELL ME ABOUT THESE THINGS?!?!? WHY MUST I GUESS AND GOOGLE UNTIL I THINK I MAY GO MAD?!?!?

This soundtrack is the background music to my life. It started even before I was diagnosed.

My ever-patient BFF and fave sidekick in life had to listen to me say things things like this out loud constantly in the year leading up to my official diagnosis. The one instance that is most vivid to me was when we’d be getting out of my car to walk into our bar for what we called “happy time.” I started to notice that when I stood up after sitting for any period of time, my legs would do a little shake thing. Like a tremble. Before I took a step toward the bar.

In fact, I know I said something really close to this because my BFF does this awesome thing where she writes down crazy things I say over the coarse of a year and then prints me up a book full of them each year on my birthday. I guess I say a lot of crazy things? Go figure. But one day as we went to walk into our bar I actually said something to her like, “I wonder why my legs do this little shake thing when I want to walk anywhere. I’m like a shimmy waiting to happen.” Or something to that affect. A quote something like that went into the book that year among other equally weird things I might have said in that 12 month span. It was like a foreshadowing of shimmies yet to come.

I suppose the doctors don’t tell you what to expect because they don’t want you looking for things to “blame” on MS. It’s kind of a mind-screw (to be polite) really. They make you guess what might be your MS until you can’t stand it anymore and you ask then they say, “Well, Maribeth, that can be very normal for people with MS that presents like yours with lesions in the blah blah blah area and blah blah blah…” I actually hear the blah blah blahs because I’ve gone mad with rage just thinking of the time I could have spent not agonizing about the symptom du jour.

That’s where you guys come in, really.

I knew this blog was helping me, mentally speaking, just to have a venue for the overwhelming feelings that bang around in my head, bouncing into each other growing larger like molecules turning into evil compounds along the pathways of  my broken central nervous system. Those thoughts have to be released somewhere if anyone is even remotely capable of dealing with the hot mess that MS turns our lives into sometimes. But there’s been a surprising and awesome upside I never predicted.

As it turns out, you guys are much better at the advice giving and symptom checking than Google or The Great Scott (all due respect to the Big G, and the TGS). You guys knit together random posts and thoughts and things I share, then you come up with a pretty damn good explanation and send it to me via IM or on a Facebook post and I feel instantly more calm knowing that I’m not actually losing my mind.

The most recent example was when one of my personal MS-gurus, I call her Joda (the Yoda of my MS). Joda and I have never met in real life. We didn’t even meet in one of the many MS-related forums and groups. We met completely randomly through a mutual friend on Facebook. The serendipity inherent in this “meeting” kind of blows my mind more than a little.

So, Joda knit together a few things that led to a place I’d never even considered before related to how my body functions (or doesn’t) in the outside world. Those seemingly unrelated but probably related things are as follows:

  • When I make it to work, I now require a special chair for supporting my head and neck because I’m in so much pain at my desk I can barely function. This chair has a neck piece and makes me feel like I’m the commander of the Starship Enterprise (or “just like that really smart guy in the wheelchair? What’s his name?” said my friend at work. “That would be Stephen Hawking and probably not the best comparison to make to the sometimes crippled girl.” And we laughed and laughed).
  • The new chair helps, quite a bit, but it still doesn’t alleviate the phenomena that occurs where by at the end of any day (even a good leg day!) when after a few hours in my office, I’m practically dragging my legs across the street to the valet, praying I don’t fall down before I make it there. Like clockwork. Weird.
  • Then there was the day I posted about how my trip to Target nearly killed me, as I pretty much became Frankenstein about 1/2 way through the store. I couldn’t keep up with my mom (who was with me and getting more and more concerned the longer she watched me lurching around). And again, by the time we were walking back to my car, dragging my legs behind me like big stupid wooden logs instead of my formerly functioning legs. It was a good leg day or I wouldn’t have even considered a trip to Target in the first place!

These things can’t possibly be related. I clearly am trying to make connections between random things that have nothing to do with each other, I tell myself. Not everything is about my MS!

Until it is.

Joda, amazing font of MS wisdom that she is, happens to mention very casually that there could be one thing connecting these phenomena that I never knew was even a thing! This one thing that might explain why my home is usually the place where my body feels the best (which isn’t saying a whole lot lately but you get me).

It’s the lighting! Joda tipped me off to the one thing all of these places have in common. The lighting. The damn bright, jarring, previously unpleasant but never energy zapping, light that is pervasive in all public places.

This artificial lighting, fluorescent and otherwise, in public locations can cause symptoms to flare up temporarily. Well shut my mouth and get me to Google…and lo, there were stories among the thousands from people who have similar experiences. People who are forced to wear tinted lenses or actual sunglasses at all times in artificial light. People who suddenly can’t walk halfway through Target (they actually refer to it as “the Target effect!”). People who have trouble with bright lights when driving after dark (ahem). This isn’t something new! People have been talking about the Target effect for years and years all over the interwebs and yet nobody thought to mention that to me at any of my visits to The Great Scott. I guess they don’t want to “suggest” symptoms you might never have?

Whatever the reason, every little bit of time that I can save trying to puzzle out if I’m crazy or if it’s my MS, every little bit of that time is critical because feeling like you might be losing your mind while you’re simultaneously losing some pretty important physical functions is a shitty, horrible place to live. Feeling like you might be losing your mind is one of the worst things about having a disease that is such a snowflake, sometimes, but at other times, not very snowflake-like at all!

Just tell me I’m not crazy and things get instantly better.

I know this is a big ask. Clearly, if you know me at all either digitally or in real life, you are well aware that my sanity has been pushed to all new levels of delicacy. I nearly lost my damn mind during my first relapse. I literally thought if I stayed one more day in that hospital bed, I could be certified insane and put into another, entirely different, kind of hospital. I can go a little batty trying to figure out what time to shower is the safest for me on a particular day because there are so many goddamn variables that my mind bends a little just trying to think through how to take a damn shower.

Telling me I’m not crazy, and not lying, is a stretch on pretty much every single day. But as soon as Joda shined the light, Kara jumped in and corroborated and then Google verified the masses and masses of people with MS who struggle with the very same thing, I felt a million times better. I know that’s also not saying much lately, but any better is still better.

On the downside, I’ve discovered yet another thing that I have to plan around. Maybe I don’t go to Target so much anymore. I’ve got Amazon Prime for most things anyway, right? I sat in my office in my Stephen Hawking chair in the dark last week and you know what? Even though there is bright glaring light all over that place, sitting in the dark with just the glow of a desk lamp actually helped my pain. It does bring up concerns, of course, that I’m now not only going to be the girl who looks funny and walks funny but now I’m also going to be THAT person. The one wearing sunglasses indoors.

Maybe it’s not entirely out of the realm of possibility that part of the reason I love being home so much of the time is not only that I can hide from the outside world of normal and very fast walkers. It is also because home is where I feel, physically, the best. I am in control of nearly every aspect of my home. Except the damn steps, of course, but I refer to those steps as my daily workout, so there’s that.

I mean, I keep wondering when it will be that I can entertain the idea of air travel again what with it involving so much of every little thing that is bad for my MS. I think sunglasses will be a must for travel to occur. Also, at my super brightly-lit giant corporate campus in Atlanta I will now likely have to be Sunglasses Girl with the Draggy Legs, but hey. My brain still works pretty damn well and I have always enjoyed being the center of attention before it was a medical thing, so maybe it’s OK?

Nah. I will hate everything about that scenario. But I can force myself to remember the many times one or a bunch of you proved to me that I am not entirely crazy after all, and I will feel a tiny bit better.

I’ll take any kind of better I can get these days. I’m so amazingly grateful for this network of wise MS friends I’ve made over the past two years since my diagnosis in December of 2015. I get kind of misty just thinking about it.

The Great Scott may be great, indeed, but you guys are the real miracle workers.

I’ve got nothing

So let’s try this thankfulness thing…

Usually my blog posts start as thoughts that I can’t get out of my head. I noodle and I roll them around until I virtually have to sit down and get it out before it drives me insane. Lately, though, my mind has been a bit dark. The truth is, I’ve got very little to say lately about my MS and how it’s generally screwing up my life, continuing to do so well past the deadlines I’ve imposed on myself like so many fake lines in the sand. The deadlines come. Then the deadlines go. Nothing seems to change. And the world keeps turning. Who wants to read about that?

I don’t even want to write about that (even though this blog would indicate otherwise).

I discovered recently at my second full dose infusion of Ocrevus that The Great Scott told my infusion room friend Marci that the magical superhero of DMTs that is supposedly the new goo can often take longer to “take” for those of us over 40. Well. I’m staring down 51 and I’m here to tell you, that shit is true. I actually felt worse after my last  infusion. It seems to be lifting this week but I had a weird bout of Frankenlegs today as I attempted to get myself to my first manicure in…months? I think it’s been months. So, there’s that.

I’m terrible at the gratefulness thing in the middle of this hot mess that my life has become. I chastise myself constantly. I tell myself it could be so much worse. I know this to be a fact and yet it doesn’t help me get all full of hope and light like it should. It just doesn’t. Maybe I’ve sunk a bit too low but the funny thing is, I don’t feel depressed. I feel some kind of weird apathy starting to grow that maybe I just need to stop fighting it so hard and start realizing that this is my life now. It just is! It’s mine and I should learn to love it, not be resigned to it, as I often feel I am.

In the spirit of the Thanksgiving holiday (where we celebrate the false story of pilgrims sitting down with the Indians all friendly like when in fact there was a whole lot of pillaging and killing native peoples by the thousands going on), I’ve decided to try harder at being less apathetic.

I like turkey. I like getting together with my family. I’m going to focus on this impending day as a chance to focus on my own little twisted form of gratitude.

Things I am thankful for…MS Edition

1. My amazing family, friends, co-workers, neigbors and various others who help me to actually live some kind of life that includes laughing, love and kindness. Without these various people…I’d be sunk. Thanks for keeping me afloat.

2. Nothing fills me with more gratitude than things being handled and thus no longer something for me to think about. Something for me to do. One example of this is the giant package of toilet paper that my wonderful sister got for me at Sam’s Club recently (even the thought of going to Sam’s Club makes my legs feel funny). She delivered it to my house. Every time I look in the upstairs linen closet I feel an intense sense of calm. Yes, you read that right. Massive amounts of toilet paper represent one tiny thing I do not have to deal with for a very very long time. Toilet paper has given me peace.

3. I’m grateful for my grocery store that delivers. I almost kissed the woman who dropped my bags inside of my door with nary an ounce of effort on my part. She was frightened. She was wise to be frightened.

4. I’m grateful for great health insurance and a great job that allow me to fund this insanely expensive disease. Drugs and doctors costs money, people. MS drugs and specialists cost even more. Thank god I am generally able to deal with that web of crazy as a result of this very important fact – I remain employed in a job I love. That’s huge.

5. I’m incredibly thankful for Cheryl my therapist who is attempting to keep me sane through this whole thing. Sometimes that takes the form of just giving it to me straight, like this past Tuesday when I said, “I’m trying really hard to see the silver lining here.” She replied, “Well, you should stop that because there isn’t one. This sucks. If anyone says it doesn’t I will fight that person.” And I instantly felt peaceful for the first time since toilet paper delivery day.

6. Dana B. my incredible hair girl is a gift in my life. I get an appointment with her, and I immediately feel better. I know that I will feel human again once she does her magic to my short-haired head. She will spin the chair away from the giant full length mirror that the chair sits in front of, when she notices me squirming at the mere thought of having to look at myself in my current condition for even five more minutes. Growing my hair, even a little bit, created a situation where my unwashed bedhead looked exactly like unwashed bedhead. This could not stand. Dana cleans me up and makes everything right again. I have workable bed-head hair again that some people even think is (dare I say it) cool! For that, I am incredibly grateful. Somehow, Dana makes even bedhead look amazing. Also her salon is one of my happy places. She just gets me.

7. I am thankful that I finally found the perfect pair of black leggings (thanks Universal Standard) as well as the perfect slippers that won’t kill me (thanks Glerups…yep that’s a thing). Also, since I spend a lot of time in slippers, I’m grateful for my Halfinger kitty slippers too (also not deadly). I can never have too many non-deadly slippers with kitties on them.

8. I’m grateful for Old Navy for making my favorite fold-over-waist yoga pants for years and years and years. Now that I wear them almost daily, and laundry involves many steps, I was most relieved to make this discovery. While we’re thanking clothing stores a big thank you shout out to American Eagle for my favorite uniform top the “soft and sexy t.” I do feel very soft (but not very sexy) every time I wear one of the 8 or 9 long sleeve black t’s I now proudly own.

9. I’m grateful that people write amazing books that I can read and forget about things for just a little while. I’ve read 32 such books so far this year and there’s still time for more.

10. I’m really grateful for the lovely woman who did my microbladed eyebrows. If not for this talented wizard, I’d be walking around eyebrow-less on days I don’t wear makeup which is most days these days. Nobody wants to be a picture without a frame. Some days, those eyebrows give me actual joy…I am shallow. And vain. This has long ago been firmly established but that was the best money I’ve ever spent.

11. I’m really grateful for all of you, out there, my digital MS family who are sometimes the only reason I don’t lose my ever loving mind on a daily basis. Your guidance, your stories, your advice and life hacks – your mere existence makes me feel less crazy. Someone else out there has pretty much experienced everything I have, often times all at the same time, and survived it. That is the only thing that can make me feel better sometimes. Plus, you guys are funny as hell.

12. I woke up this morning (already a win). I spent the day making yummy things with my mother, my most favorite person in the entire world (and I have a lot of favorites). She never fails to make me laugh. And we move at about the same speed these days though she is much more ballsy than I am. Nothing holds that woman back. I need as much of that in my life as I can get right now.

13. People that love me, enough of pretty much everything (too much of most things), a home I love, a bunch of kitty cats to keep me busy and calm all at the same time…

Ok. As it turn out, I am incredibly grateful for a whole lot of things. My life is awesome. Even with MS. Even with my funky walk, dirty hair and random dramatic falls. I am incredibly fortunate. I will try to remember that more often.

Happy Thanksgiving, y’all. May tomorrow be a good leg day, a great food day and full of all of the things that you’re grateful for.

My expensive Internet slippers tried to kill me

Um…I’m a tad bit bruised around the nose area you might say.

It’s been a good long time since I took a good tumble.

I haven’t bragged about it much. Especially whilst suffering from the dizzies and woozies during this last relapse because it felt a little like tempting fate. I’m brave. I tempt fate a lot. But I hate to fall, so call me conservative on tempting the falling god, I wasn’t gonna brag about it. I’m sure wherever she is, God of Dramatic Falls would love to look down upon me and smite me something good.

And lo! So it was that I was visited by the God of Dramatic Falls earlier in the week, in front of not one, but three guests (one was a baby and she barely noticed, bless her heart). Since one of those guests was my mother, this was not the most convenient time to have such a dramatic battle with gravity as I think I nearly gave her a heart attack from the panic.

The thing is, it wasn’t entirely because of my MS that I took this expertly choreographed nose dive into pointy corner of the wooden post that supports my stairs and railing. It was only partially because of my MS but mostly it was because of my formerly favorite slippers.

You may have heard of them. They are advertised all over the internets just waiting for suckers like me to spend much too much money on a pair of slippers. I mean, why buy regular old cheap slippers when you can spend way too much on these! They’re called Mahabis.

What lured me in to buying Mahabis (not once, but twice I might add) was this awesome rubber bottom that attached to the wool slipper with a nifty little snap at the back of the slipper essentially making these slippers indoor/outdoor friendly.

I wear them a lot when I’m home since many slippers are deadly to me because they are too slippery on my mostly hardwood floors so I liked the rubber sole option. Also, as you might be aware, I spend a lot of time in lounge wear. It’s kind of nice to be able to run out to, say, the pharmacy, the grocery store, to the trash bins outside – or even to a restaurant for early-bird special sushi dinner (hypothetically).

I actually did this just a few short days ago.

I went out in my lounge wear, covered in cat hair, sporting epic bed head and wearing my snazzy indoor/outdoor slippers. The sushi was wonderful. My dinner companion unfazed by my obvious lack of cleanliness. My psyche only slightly damaged by being in public among the people after actual dark. I mean, it was 7PM when we left the restaurant but to me it felt like midnight. The miracle slippers look like this and they come to your house in a fancy box:

The slippers of death.

But I digress. Back to the story at hand…

I was picking up a dish that I had set out with some cakes for my guest to nibble with her tea while she sat on my couch feeding tiny adorable little baby Stella. I wanted to get the dish out of her way and carry it into the kitchen. Easy, right? Sure. Definitely. No biggie. My mom was in a chair across the room chatting with my friend about her formula that she has shipped in from Germany and how different it was back when my mom had her babies etc etc. In other words, she was distracted or she would have never allowed me to attempt to clean up the table all by myself.

I had the dish of cakes in one hand, absolutely nothing in the other and began to walk toward my kitchen completely unaware that the tiny snap that holds the rubber bottom to the top of the slipper had come unsnapped. The rubber bottom was unattached from the top of the slipper like a giant floppy tongue. It caught on the area rug runner I have going from the front door toward the kitchen and sent me and my dish of cakes flying forward.

As I was going down, because as I explained earlier my damn foot was stuck (flappy rubber bottom thingy was stuck between my slipper top and the rug), I was thinking omg, omg, omg, omg, no, no, no, no, not now, not here, NOT in front of my mother (she’ll never stop worrying about me now)…When BOOM. My face hit the corner of the wooden post of my stair railing, the dish went flying and the cakes spewed every which way.

Falling is both horrible and terrifying. It also feels like it’s not actually happening because in your mind, you had absolutely zero intention of doing the worm on your belly like you were attending a super crazy frat party. But somehow you are now lying face down in your living room on the hard wood floor absolutely stunned.

My first reaction was to feel my nose to see if I’d broken it because I hit that point on the wooden post face first and I hit it hard. To be honest, it hurt like I broke it but there was no blood which seemed like a good sign to me. It was throbbing, however, and that felt like a very bad sign. It felt bigger than usual on one side.

Whilst I was falling to the floor in a violent, messy, manner my mother jumped up from her chair and practically sprinted across the living room toward where I lay, to see if I’d survived. All I can say is thank the goddess that she wasn’t holding that 6-week old baby at the time because she just may have tossed her in the air in her frantic adrenaline powered panic to get across the room to me, still on the floor face down.

Falling is also surreal. When you sit yourself up you are in utter amazement, astonished that your body just did what your body just did. It just feels so wrong! As if things like that shouldn’t be possible in a decent world. I was dazed and in pain looking at cake strewn all over the floor and assuming shards of plate scattered over the hardwood floor. My mom had my face in her hands as she examined me to make sure I was actually and truly OK. I looked a little forward and saw the plate the cakes were on sitting under the leg of a small stool, unbroken. I gestured for my mom to get it before we pushed down on the stool and shattered it into a million pieces. I remember thinking…how the hell did the plate get UNDER the leg of that stool without getting broken? It didn’t seem possible in a sensible universe but this universe I live in is anything but sensible, so OK sure, I’ll accept the unbroken plate as a good outcome of an unpleasant, unplanned bit of acrobatics.

I did try to get up to get the plate myself, but my mother firmly told me to sit the hell down and stay still. She had already picked up the cakes, got my cordless vacuum from the kitchen and was cleaning the mess. Every time I tried to offer to get up and help, she gave me a look and I immediately stopped trying and sat the hell down. I’ve seen that look many times before over the course of my 50+ years.

It was the same look she has given me all of my life when I knew I was about to experience the full wrath of the powerful force that is the quintessential fully-in-charge-of-the-situation mother who loves you but is not having your crap right now. Whether it was for telling a lie and getting caught (“Tell the truth and shame the devil, Bethie”) or whether it was for taking a loan and not paying it back (“I should have named you crime because you don’t like to pay”) or whether it was for upsetting her in any of a hundred of ways…I got the look. I stopped. Did as I was told. The end. It was that same look she gave me each time I tried to get up.

I should emphasize the “trying” part of that sentence. That’s where the MS thing comes in. I was shaking, my legs no longer operational, my body aflame in pain pretty much all over. I had to crawl to the carpeted steps on my hands and knees (attractive) to get a good hold in order to hoist myself up. All the while, my friend is still feeding her beautiful baby telling me it was no big deal, don’t be embarrassed, everyone falls etc etc etc (and me feeling every one of those things was very far from the truth but grateful to her for saying them).

I couldn’t walk completely upright because of searing pain in my lower back. I fell on my face and somehow hurt my back? Even I’m impressed with that feat. My legs shook and felt inoperable as I stood up. My face throbbed. Today, two days post-fall, my nose has reached new levels of purple, it looks to be spreading to my eyes a bit and my shoulders and upper arms are sore like I lifted weights yesterday during a good, long workout. I didn’t do that. Obviously.

So, there you have it. My no-falling streak starts over as of last Friday. I made it almost 18 months on my feet the last time. I’m gonna try for two years this time. You know I like a good challenge. I’ll try to achieve this goal because my body didn’t really need the additional pain that comes with falling, on top of the regular old pain I’m always feeling. Nor did my face need redecoration of this particular sort.

Only 8 more days until Ocrevus infusion number 2. Let’s hope it does some magic and gives this body a little boost.

My body could use a damn break. And I’m not talking about my nose.