Well, it’s probably not exactly 527 but it’s gotta be close by this time, so while I sit here with no power and nothing to distract me but my dying computer and this blinking cursor it seemed like a good time to share some strings of words that have been swirling around my spotted brain in the last several days. But where to begin?

I’ll start here: Patience is a concept that you just don’t get until you have to.

That’s just the damn truth. Prior to this Lemtrada recovery experience, I would have probably told you that the last three years since I was diagnosed with multiple sclerosis have taught me the importance of patience, waiting, solitude and quiet reflection. For three years I’ve sat here and thoughtfully observed the realities of a limited life, telling myself that my finely-honed skills of self-reliance and independence had set me up well for what would end up being the single hardest thing I’ve ever experienced.

Yeh, I was pretty full of shit. Like as full of shit as a person can be, actually.

Nothing could have prepared me for the level of screeching halt that my life suddenly, but not suddenly, has experienced. I’m so sick of the annals of my dark and twisty mind that even I’m over me. I’m so dizzy from the swinging back and forth between Zen-like calm and manic, desperate panic that it makes my MS-related occasional vertigo look like a calm stroll through the quiet woods on a lovely cool spring day. Or what I imagine that kind of thing would feel like because I’m not very good at walking right now and I tend to hate the woods even on a nice cool spring day, but you’re probably much more outdoorsy than me and likely get my meaning.

I write about it and that helps. For a hot minute. Then I post what I write and I feel all proud of myself for a hot minute for not crumbling like a day-old scone in the face of adversity but almost instantly my thoughts veer back to, “Holy shit why is everything so hard and how am I going to do this and what the fuck, who can possibly be expected to live like this and Christ on a cracker, does the world actually end at the threshold of my front stoop like it feels it does to me on a daily basis?” And then all of my deep, soothing words of wisdom feel fraudulent and false.

A wise person with MS, in fact many wise people with many chronic illnesses of many varieties once said, “You don’t get it until you get it.” I’m here to tell you that truer words have never been spoken. I didn’t get it. I still don’t get it and it’s actually happening to me. When you give me optimistic advice like, “Well, you can still do so many things,” and “You’ve always been a loner, you can handle this,” and “You’ve gotten through some really shitty things in the past – this isn’t going to take you down…” or my personal favorite, “I wish I could stay in my living room and hide from the world, that truly sounds like heaven to me right now.”

Right. I get it. You really don’t get it until you get it. Never have trite sayings like “Be careful what you wish for, you just might get it,” hit quite so close to home. I try my best to explain what this degree of solitude and limitation does to a person but I fail. You might think I do a pretty good job but trust me when I tell you that I do not.

How ever it is that you think this level of being cut loose from the fabric of life would feel like, it feels that much worse. Our society, our culture, our very way of life isn’t designed for this level of nothing. Learning to dig deep and somehow be OK with being cast out of the world I used to revel in is a seemingly impossible task for one simple reason: My brain may be broken but it remembers quite vividly what life was like before MS. Yes, it was often hard and annoying and exhausting and totally messed up and scary but it was better than this parallel world where the sheer memory of things you’ve done and places you’ve seen and the person you were swirl around your damaged brain threatening to drive you straight up mad.

I’m sorry. I haven’t found inner peace through chronic illness yet. I know as a blogger who writes about chronic illness, I should be better at those kinds of stories – the stories I want to write so very badly – but those words just aren’t there yet. I don’t know if they ever will be.

Thing the second: Friendships change, they come and go, evolve and disappear, but sometimes the internet puts the right people in your path.

Kate came to visit me this week. Kate is a new friend I met through these very pages – a reader of this ponderously depressing blog who reached out and made a connection. Kate and I chat a good bit. She’s this seemingly impossible combination of pure sunshine and positivity blended up with acerbic wit and a mean knack for saying the right snarky thing at exactly the right time. Kate is like a goddamned chronic-illness-having unicorn. Then, Kate’s husband had a work conference in Pittsburgh bringing her within driving distance of my living room, that place where so much of my life takes place these days. We made a plan to meet in real life.  Then a miracle occurred and neither of us canceled the plan. We had an actual visit!

Kate is so much more and better and perfect in person than she is online. It seems hard to believe. She gets around like a little Energizer bunny and fills me with shock, awe and blatant envy. She recently discovered the wonders of the Rolls Royce of rollator/transport chair combos the Rollz Motion² in a snappy, fashionable matte black. I watched from my big green chair as Kate struggled to get up the steps to my front door with her Rollz and I felt terrible that I couldn’t even attempt to get myself out there to help her. She also had to navigate the stairs to my second-floor bathroom several times because, well, MS is an asshole, and it made me feel like a terrible hostess for the second time in a few hours but Kate simply doesn’t let things like that stop her. Osteoarthritis in both knees made my stairs even more awful for Kate but she just laughed it off, like the trooper she is and got herself back to the first floor for more laughing and bonding and treat eating. (The treat eating was all thanks to my mom…I think I’ve already noted a few times what a shite hostess new-me is, so I’d planned ahead.) My mom came through not only with homemade pepperoni bread but also a pretty impressive cookie tray – because of course she did. Future visitors should note: I’m not a gluten or sugar free household.

Some random things I occurred to me during our visit…The internet gets a bad rap sometimes. We both laughed about how our visit felt like a blind date where the potential new friend’s smiling face could possibly hide the menace of a serial killer so we probably should have set up the usual online dating safeguards like the text from a friend or the emergency phone call an hour into the visit. But our in-person connection was just as instant and real as our online connection. Don’t get me wrong! I’m sure there was just as good a chance that we’d both have been sadly disappointed, like every Match.com date I’ve ever been on, but that didn’t happen. Whew.

We laughed at some very hilarious and incongruent things about the both of us that might have seemed like friendship deal breakers on paper but were anything but. Kate was checking out a fabric store in the city neighborhood on the street where I grew up to get materials for the clothes she makes for her dolls. SCREECH…Wait. Dolls?!? Ask anyone who knows me to state one single thing that scares me more than multiple sclerosis and even the most casual friend will tell you that dolls scare the shit out of me. I told Kate that my fear of dolls wasn’t always such a thing. I mean, my mom used to hand-sew undergarments for my Barbies when I was a kid so those ladies didn’t have to be so naked and slutty. I can clearly remember the names of every one of my beloved childhood baby dolls. I remember being damaged for life when my sister gave my favorite baby doll, Buttercup, an unscheduled haircut. I loved my babies with the ridiculous names (that I gave them, mind you) a whole lot.

Until that fateful movie commercial in 1978 for a movie called Magic. The trailer was a stark close-up shot of a ventriloquist dummy talking to camera. There was a sing-song rhyme about dolls and murder that I could type for you here from memory, but instead you can go be traumatized yourself thanks to the wonders of the internet (again). The first time I saw that commercial it caught me off guard. I was struck dumb with horror and sat there glued to my TV set to watch every tortuous second of horrific freaky talking murder doll. After that, eleven-year-old me got quite savvy at sensing the commercial was about to play and I’d run from the TV room with my ears plugged just to avoid its nightmare inducing sound.

Me and dolls? Not a good match. Me and Kate, though? Such a good match! If any of my Match.com dates had gone half as well as my awesome visit from Kate did, there is a damn good chance I’d be married again right now. I don’t know if I have the words to express how nice it is to talk to someone who just freaking gets it. We’re snowflakes. We’re all different. Kate has upper body challenges I don’t have. I have a degree of mobility challenge that has not been Kate’s number 1 complaint. The woman gets around! She had an itinerary of restaurants, sites and shopping while on this short trip to Pittsburgh that made me tired just hearing about it.

The bottom line, though, is that there is an instant understanding that comes with someone who also has this godforsaken disease that feels so good that you just want to put these friends in a box and keep them in your basement for the next time you are feeling incredibly lonely, sad, invisible and irrelevant in the outside world just so you can conjure back that feeling of being truly seen one more time. But I kid! I’d never keep you in a box in my basement. That was a JOKE.

Thing the third: Sometimes you take drugs because you need the damn drugs.

I take a magic pill called Ampyra that proclaims to help me walk. You might remember me writing about it a few times before. I’ve always been somewhat incredulous that taking a tiny oval white pill twice a day could magically make me walk better but indeed, that’s exactly what it does. The mechanism of the drug smooths out the signals from my CNS to my walking parts – that’s my laywoman’s attempt to explain how the drug works. It only works for about 30% of people who take it. It’s one of those drugs where the FDA notes that nobody is exactly sure how it works or why, but it just does.  That sounds totally hinky, right? So, it should come as no surprise to you that I have a hard time believing this drug is real.

Especially lately! I mean, I can barely stand up for more than ten minutes right now, let alone walk! I take handfuls of prescription drugs twice a day, every day. I take even more supplements and other magic potions just in case. When I’ve been struggling to get myself to an upright position on a daily basis it’s easy to want to toss my many magic pills in the air and stop putting so many evil chemicals in my body.

I mean, go online! If you can’t find an article about the evils of pharmaceutical and even OTC medications within 15 seconds, I will personally write you a check for a million dollars (it won’t be a good check, but whatevs, I’d still write it). Go spend some of your overly abundant alone time surfing Instagram. You will find so many accounts from people who have cured their ills with all manner of diets, exercises, essential oils and natural remedies you will immediately run out to buy a giant head of celery, a juicer, all the weed your money can buy and possibly kick yourself when you realize that celery doesn’t come in heads when you embarrass yourself at the local Whole Foods. You might also start to feel like a failure for your medicine-taking, pill-popping, sugar and gluten-laden lifestyle.

You might start to feel like you even suck at being sick. Then, you might do something drastic like randomly stop taking your magical walking drug that is obviously not working (on top of being another mysterious evil chemical compound wreaking havoc on your supposed leaky gut). I mean, that would be healthy right?

Or not.

Let’s just say that the walking pill is actually working for me. It’s working really well. After two days of not popping my two little white pills I was borderline completely paralyzed. My stairs between the first floor and the second-floor bathroom morphed into Mt. Everest. Transferring from any one position to another position – like getting up from bed, a chair, the couch, the freaking toilet – became a two-person job. I only live with one person. I am, in fact, that person and I was broken, out of order, not able to perform the tasks of one quasi-able-bodied person forget two. I stuck it out in this capacity for 48 hours before I broke down and took the damn pill. By the following morning, I was back to shuffle-dragging all over my house, taking the stairs two at a time. Not really on that last part but I am feeling 100% better and back to my best version of quasi-lameness.

It reminded me of how I was certain a few weeks ago that I no longer needed the medicine I take for bladder urgency and frequency (that one is called Oxybutinin). I think it was the following day that I sneezed and peed through a brand new clean pair of pajama bottoms. Twice. I re-started that drug within a week and lo! No more unexpected waterworks. I’m not sure why I’ve decided all of the sudden to question every little detail about every little drug I take for some very important and troublesome symptoms. They work. The side effects, for me, have not been bad at all. I let the world get in my head, making me feel like there should be some better or more acceptable way for me to help myself with symptom relief than the ways I am managing my symptoms now. It’s like peer pressure that I’m putting on myself. You’re not doing this to me. I’m doing this to me. And it’s dumb.

I have enough shit to deal with right now without trying to second guess every detail of every medical decision I’ve made since my diagnosis. I’m making things worse on myself for no good reason – except for the one where I somehow think I’m to blame for all of the bad things that seem to be happening to me lately. I even blame my body for not responding to cannabis the way I wanted it to. I mean, imagine forcing yourself to get high knowing that every strain, every variety and every form has made me feel worse since I got my damn medical marijuana card! I wanted it to work so badly. I blame myself for making the wrong choice to take the drugs that help my symptoms when those choices are probably pretty damn good for me and my body. For my own version of this damn snowflake disease. This is one of those things I need to write down because I will feel this way again and I need to come back here and read this again before I pee my pants or render myself immobile yet another time.

So that’s what I have to say about all of that!

You can blame this lengthy post on my electric power company who has yet to solve the problem of my lack of power at my house due to a crazy wind storm. I had to ask my nephew to bring me to my mom’s house. Oh. And guess what? Sudden changes in plans also mess up my body, which made getting here super fun. Clara may have blown away with me still holding on so I had to leave her at home. I wasn’t taking that risk but I really hate holding on to people and not my rollator. It drives my nephew nuts! But that’s another post for another day.

 At least I’m watching the red carpet finally, I’m warm and I had a yummy impromptu dinner with my mom and Alex. As is always the case, things could be so much worse. But thanks for listening to me rant about all of it anyway. It’s annoying. But it helps.