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.

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 finally had a massage

That one time a miracle occurred and I got a shot of all four felines in one frame. There from the top are Ivan (14), Owen (12), Fred (14) and Roger (9). My furry matching menagerie.

(READER NOTE: If you are a cat lover, or any kind of animal lover for that matter, this might be a post you want to skip. I’m serious. I can’t bear to think I’ve shared something that would upset anyone reading. Come back next time. Seriously. I won’t be hurt. I wish I didn’t have to write this one. I felt like I had to. Also, to be clear, all four of my beloved felines pictured above are all very much still with us. Happy as little clams. I promise.)

I had a massage yesterday. A very long over due massage.

I’ve been having some super irritating pain in my neck and back. I’m not MS-savvy enough to know if this is disease related or something else related. I’ve been seeing my massage therapist Michael, for over 18 years. I found him when I moved into my neighborhood at a salon very close to my house. He has become a friend and not just my massage guy. He has an awesome wife that I also really like a lot. I am usually an every other week massage customer so he might technically be my longest regular relationship with a male person. (It totally counts!)

But, I haven’t seen Michael since before the relapse in late July. That’s way too long. My back and neck (the area I affectionately refer to as my hump) has been throbbing with pain for weeks now. Of course I have no idea if it’s MS-related pain, or some other pain related to any one of a million different things. Even after the massage I was sore all night and into this morning. Tonight it’s a bit better. It doesn’t feel nearly as bad as it did yesterday but it’s still pretty sore.

I shared my slew of great news while laying face down on the massage table for optimal back and neck access. My news sounded a bit like this…Relapse, hospital, being home bound, more steroids, more steroids again, dead father, funeral, aftermath, finally getting back on my feet, kind of, the end. A veritable slew of fantastic news that I am growing weary of telling. I’m just going to make something cheerier up for the next time I see someone I haven’t seen in a while.

Then Michael showed me a picture of his new kitten Javier.  We always talk about our cats when I visit. Michael has two cats. Max is 0nly 6 years old. I stupidly asked how he was managing with three cats now. He said, “Well, that’s kind of a terrible story.” And I said, “After my litany of terrible news, how bad could it be?” I mean, I’m a realist. I had to know. I think about how I will handle the death of one of my cats all of the time! It’s morbid. And impossible to stop doing. Turns out that was a stupid thing to say. I was thinking to myself, “You need to hear this. You have a house full of old cats. You have to be prepared. It’s inevitable.”

So Michael told me what happened to Max.

Michael woke up one morning and heard his two cats running around the apartment, chasing each other and playing. That wasn’t unusual at all. He laid in bed listening. Then he heard a very strange hissing. He said it surprised him because his cats never hiss at each other. So he got up to look. His cat Max was laying on the floor panting with his tongue laying out the side of his mouth. Something was obviously very wrong. He started making growling and mewing noises as he tried to get to his feet but his entire back end couldn’t get off the ground. He was attempting to drag himself around, moaning and dragging his legs behind him on his belly, propelling himself forward with his front paws. Michael said it was a horrifying sight and the sounds were terrifying.

Our collective vet is literally three minutes from Michael’s apartment (also close to my house). He saw that it was near 8AM and he decided to get to the vet the second they opened so that he could decide if he could make it out to the emergency vet hospital, that is at least 30 minutes away from where we both live. He somehow got Max into a carrier, Max screaming the the entire time. He was biting at the metal bars on the carrier, making his teeth and gums bleed. Michael said he’d never heard those kinds of noises coming from a cat and he was freaked out. He’s a cat person. He’s had many cats. For him to be shaken like that it had to be pretty awful.

When Michael got inside the vet office, the receptionist told him there was no vet there until 8:30AM. The sounds coming from the carrier were getting worse, as was the blood coming out of Max’s mouth from trying to bite on the metal bars of the carrier. Michael opened the door to attempt to comfort Max. But there was nothing he could do to make the wailing and panting slow down. While his hand was in the cage attempting to comfort this poor cat, Max clamped down full force on Michael’s hand and bit his thumb hard. Now, Michael is bleeding too, all over the vet and all over the floor. Thank god he was called back to the examine room more quickly than he thought (thank heavens for early risers).

The vet tech saw what was going on and brought Max to the back immediately to be looked at. Michael just sat in the little exam room all by himself, feeling sick from both the blood and pain from his hand and the condition his cat was in. The vet tech had given him a cloth to hold on his bleeding hand to stop the blood.

The vet came into the exam room. Thank god it was the woman vet we both tend to like most. She explained that Max likely had a pulmonary embolism. He was paralyzed from his waist down and in a great deal of pain. There was only one thing to do. She asked if Michael wanted her to bring Max into the exam room for the injection. He, of course, said please, yes.

She walked back through the door in the exam room to the back of the facility where the procedures happen and was back in the exam room within less than a minute. She said she couldn’t bring Max in. He couldn’t be moved without causing him excruciating pain. She would have to bring him to the exam room once he was gone. By that time, Michael’s wife Mary was there with him. They both sat looking at poor Max wrapped in a soft blanket on the cold steel exam room table, finally quiet. Hearts broken.

I was on the massage table face down as he told me this story and I could feel myself getting anxious. What would I do? How could I ever handle such an event? How could I manage to do all of that if one of my very large cats is ever in such a situation? Would I even be able to manage it? Who would I call? I would probably call my friend Sandy but she’s not at my service at the drop of a hat. Nobody would be or should be. I might call Alex, my nephew who is my go-to helper…I honestly don’t know what I would do. It was making me sick just thinking about it. I was grateful to be face down. I don’t know what my face was doing with all of this running through my head watching tears dropping to the floor from the center of the head rest.

All I could think about all the rest of the day and into that night as I lay in bed still thinking about it incessantly, was what would I do in a similar situation? I tried to send a wish out to the universe to allow my kitties to go quietly in their sleep, when they have to go. Let me just come upon them once it’s over. Let me not have a dramatic final panic (like Michael went through) that I’m not sure I could even begin to handle. Michael is a strong guy – physically and otherwise. He’s not broken. Like me.

I can’t get it out of my head. I thought if I wrote it down it might help. It usually helps. It’s not helping as much as I’d hoped it would. But I had to try. I often feel lately like I have the world’s shittiest luck. You’ve probably read those exact words in previous posts. It’s a problem I have. The thing is, that’s so selfish and ungrateful of me. I have so many things to be grateful for even now. So many things have gone my way in this life that I should never have one day where I am not brimming over with unmitigated gratitude.

I feel like this disease changed everything almost instantly. Now, I’m the “only-bad-things-girl” and it scares the shit out of me. Why would the deaths of my cats be anything but horrific? That’s usually what I get these days. I have this certainty that I can’t shake. Only bad things. Only bad things. Only bad things. That’s not true, is it? It can’t be true.

That’s some major catastrophic thinking right there. I can hear Cheryl, my therapist, in my head and I know she’s right (even virtual Cheryl is usually pretty right on).

I need to shake it. Believe in something good. Believe in good outcomes and you will get good outcomes. It’s so freaking hard after nearly two years of my health going pretty steadily down hill before my very eyes. It’s really, really hard. How can I find my own faith in good things? How can I start believing that good things will start happening to me once more, if I can just get through this part. This shitty part. I need to make a plan. I need to figure out how.

Actually, I’ve done something entirely different. I’ve decided to try not to think about it at all.

Ha! How mature of me. My “plan” consists of this: Deal with that horrifying thing when that horrifying thing happens. Stop anticipating horrible things happening. Start believing that good things will. That’s usually my only and best option. Sounds easy.

It’s not.

(Sincere apologies to all of my cat loving readers…I know this one was painful to read. I wish almost wish I hadn’t written it. But I had to get it out of my head. I hope you will forgive me.)

When words fail the writer

Rest in peace, Daddy. You did good.

We all get there eventually, I guess. We all get to the point where you are just so blind with anger and frustration that you don’t even have words to describe how angry you really are. I’m a word girl. I’ve been struggling with words.

I think I may have taken the expressway to my current state but as of this middle of October, I am personally ready to put a lid on 2017. I know, I know. I hate to curse myself too, but hell, I’ve made a career of it thus far and still I’m here. So, go on, Universe, give it to me. Pour on a load more misery, a tad more challenge, a little more what the eff. Oh wait. You already have because you’re kind of an asshole.

I remember that now.

I hate feeling sorry for myself. I like to be the plucky, looking-always-on-the-bright-side kinda girl you all have been getting to know (or for some of you, who have known me for years and years) but at times, more times than I’d like to admit so far in 2017, even I get to the point where I have had enough. I have had enough.

This disease is a bitch. She lets you get all positive for like 20 minutes then you find yourself calling a friend for an escort to the office from the parking garage just across the street because you get dizzy when you actually try crossing the street (looking both ways…easier said than done for me at present).

You think your relapse has come to an end…but shit keeps going awry and life keeps happening (and eventually death happens too) and whoa. Is it possibly the truest statement ever made by some very wise and sage and learned medical professional that stress can magnify the symptoms of multiple sclerosis? Why, yes. Yes, it is. Stress is the devil.

I laugh in the face of stress! Or, I should say, I used to. Now I am stress’s bitch. Stress turned my legs into tree trunks, my body into a throbbing ball of intense pain, trembling like a rubber band stretched a little too tightly, ready to snap…and on top of that, drugs designed to keep me awake actually made me manic. Manic. At the funeral home where your beloved father is laying at rest in an open casket. Super appropriate. Thanks Provigil. You kept me from falling over but you also made me into a fast-talking, loud-talking, super-energetic ball of obnoxious at my own father’s viewing. Probably not the tone one should have going into such a horrible, sad event.

By the end of the night (it lasted five hours…just five hours where I was mostly able to sit) my entire body was shaking. I fidgeted around up and down, down and up, changing positions in my chair just trying to hide the pain I was in, weird smile plastered on my face. Once it was over and the people were gone, I couldn’t hide my shaking hands and my trembling legs. I barely made it to my car. I knew what was coming.

On top of being incredibly sad, after saying good bye to her husband of 56 years, now my mother would be worried about me on top of it. I thought I could hide it better. I was wrong. I used to be able to fake just about anything! Now I can’t. I had to arrange for help when I finally got home getting to my house from my own driveway (much less than the dreaded 100 feet) because there was nothing to hold on to between my car and my house and I didn’t think I’d make it. I’m very lucky that I have people in my life who come running when I call for emergency help. Who are willing to hug me for a while as I sit in my kitchen and sob, like a crazy person, not because my father was gone but because I couldn’t even not think about MS long enough to realize that my father was gone.

MS is always and will always be hanging around my neck like a fucking anchor, waiting to drag me down to the bottom where I probably won’t be able to get back up once I’m there. Even when everyone tells me it will get better! Stay positive! It won’t be like this forever…I hear the little voice inside of my head saying, “Um…but what if it is? What if it just keeps getting worse?” I see that happening out there too, folks, and this isn’t looking good from where I’m sitting (un-showered) trying to blend into the scenery so nobody notices. What if this is as good as it gets?

The next morning after the viewing, my mother had already texted me before I woke up around 9AM. Mass was at 11AM, the latest our church would allow for a Saturday funeral, and my mother texted that she wanted to talk to me and please call immediately when I woke up. I knew what was coming. She wanted me to know that she didn’t want me to go to the funeral. She said, “You’ve already done what you could do for Daddy, Bethie, and you can’t do any more. That was too much for you last night and nobody would judge you for not coming least of all me. Please go back to bed. Rest. Come to lunch later if you’re feeling up to it, but get your rest now.”

I try to do the right thing, generally speaking. I knew it was going to stress her out if she saw me struggling to walk into the church. I told her I’d gotten a ton of sleep the night before (I didn’t…thanks Provigil) and I was feeling much better. I told her I couldn’t bear to not attend my own father’s funeral. I asked her if she would be OK if I came because I really wanted to go. I didn’t tell her this part though. I didn’t tell her how fucking sick and tired I am of always being someone to worry about! I’m tired of wanting to help, but adding to the stress of others because they clearly know I can’t help (anymore). I’m the help-ee not the help-er and I fucking hate it. Also, if I ever used that kind of language with my mother she would beat my ass and wash my entire mouth out with soap several times, so please don’t tell her I have the language of a truck driver because it’s only getting worse the longer I have this cursed disease.

I didn’t do the right thing this time and it was selfish.

I got to the church uber early so nobody would see me walking in. I got myself into the first row of pews and sat down and tried to look calm and serene. When my family got there, we hugged, we held hands and we went through a ritual none of us are really all that into anymore but our father was a long-time singer in the church choir and would have had it no other way. We all realized at different times how much we missed hearing him on his “parts” of particular songs. We all had our own memories of Daddy singing in church. For me, it was when he sang the Ave Maria at my wedding. For my sister and brother, it was probably something completely different but our Dad loved to sing and he sang like an angel.

The bottom line is, I’m still recovering from that funeral. Something that should not be about me and how I feel, was about me and how I felt because I have this godforsaken disease that makes me needy. I cannot be a helper very often, or at all. If I was a good daughter I would have stayed home and slept more. I decided to be defiant and try anyway. I have allowed this disease to take so many things away from me. It’s been like watching tiny parts of myself erode so subtly that sometimes I don’t even realize that part is gone until weeks or even months have gone by since I last noticed it wasn’t there. I am always trying to get to know who I am now, because it just keeps changing. Little by little. I don’t even recognize myself most of the time. I couldn’t allow this stupid, infuriating disease be more important than my father’s funeral. I needed to be there.

I did my best and I made it through the mass and the after-mass lunch. Then I came home and slept for almost 24 hours. I expected that. It’s the “MS-tax” or so they call it, and I was prepared to pay it. What I wasn’t prepared for was waking up dizzy again. Or throwing up a bit more. Or being thrown back into drunk walking like I’d been doing during my relapse.

That whole scene I described above where I had to call the world’s best friend to be not only my friend but my human walking assistive device, happened the Tuesday after the funeral was over. I’d used my official “bereavement” time off and I felt the need to show my face in the office. I knew when I woke up throwing up that it was probably not the best idea. Goddammit I had showered the day before and I was clean and I would not waste a clean day at home! I drugged up, dressed myself and pushed myself out the door.

That was also NOT the right thing to do. I should have done my afternoon of telephone meetings from home instead of sitting in my office with the door closed where I wouldn’t be seeing or interacting with anyone there anyway. Ever since that Tuesday, I find myself in bed by 6:30PM at the earliest, 8PM at the latest. I’m still super shaky. It’s still too much effort to stay straight. I’m still wobbly and dizzy and sometimes I get sick too (not so much, though, I think that part might be over now). It’s not as bad as it was during peak relapse, not even close, but it’s not good. It’s like relapse-light? Is that a thing?

I’m sure it is. I’m sure this is all very typical and nothing to be alarmed about and not the way things will be forever. Or is it? The bottom line is that I can’t count on being able to fake my way through the hard things anymore. It might not always be this bad, but it will always be just bad enough to be a factor that I need to actively consider. I can never plan to go anywhere, not even to my own father’s funeral, without thinking of my MS and how I am going to deal with that on that particular day. I’m tired of myself. I’m tired of being so high maintenance and needy. I’m tired of having multiple sclerosis.

Believe me. I know. It can (and probably will) get worse. I should be grateful. I am grateful in my own ways. I make sure the Universe knows it, but sometimes? Sometimes I’m too angry to be grateful. I’m just so pissed off I could spit. It had been a few weeks of feeling this way, through my father’s final weeks, and I hated every minute of having to think about ME before I thought about HIM or my mother (or my siblings). I’m a burden before I’m officially a burden. And I’m over it.

What my mother said was true. I had done what I could reasonably do for my father before he died. Admittedly, it wasn’t much. I would pop over and see him. Chat a bit. Help him open up the Werther’s hard candies my sister brought for him. He loved those damn candies.

Even when he was struggling to talk or fighting to find the right words or struggling to breathe, when he saw me the first thing he’d say was, “How you doin’ today kid? You ok today?” He was worried about me and how I was doing knowing I had been struggling lately with my MS. And every single time he asked I lied and told him, “I’m doing OK today, Daddy. I’m doing pretty good. I’m going to be just fine.”

The Darkest Places (So Far)

In other words, when you get a diagnosis of multiple sclerosis that you weren’t expecting late-ish in life and let those words sink in, you understand viscerally that this is definitely not a good development. Things are about to change from top to bottom and every where in between. You pretty much get that from the very beginning (for me, early December 2015). You have to tell people who love you, first. Those are dark days indeed.

As you read and do some early research and find some voices you rely on for reliable information you feel yourself wanting to be hopeful, wanting all of those voices to be true. The voices of the Societies and Foundations and all the rest. This whole MS thing will be bad for a good long while, but it WILL get better. You will find your legs (bad choice of words or the perfect set of words. Depends on how you look at it). Just believe it. Hang in there. MS doesn’t have you!

The lazy writer in me wants to use the eye roll emoji in this post at this particular juncture. You get on that “MS doesn’t have me bus” and you listen to friends tell you stories about their friends (or friends of friends sister’s aunt twice removed) and she runs marathons with MS. Surely you can do that too! Chin up, buttercup. Better days are on the way.

And I do know there are better days on the way. Currently, better days are in speedy delivery mode as I choked down the most bitter giant 10 chalky tablets of prednisone ever made this evening after a command performance today with The Great Scott.

When TGS calls you and says be here at 1:40PM well…you put on your best black yoga pants/tank top combination. You have 75 identical versions of each so it’s a complex decision making process. You run your lint roller over your freshly laundered daily uniform because with four felines running around, and over, every surface of every item in my home that I’ve not left all that much in the last 6 or so weeks, you can’t be too careful. You don’t want TGS thinking you’re that cat lady (even though you are much much worse than that cat lady…he doesn’t need to know that). You pop an antivert and you get your growing behind off the couch to see the wizard.

And that is exactly what I did.

The Great One himself had two new students, Kyle and another Samir but not the same Samir from the last time. This Samir had some shiny and very voluminous black hair styled in a casual, not-over-done hipster doctor pompadour. It was really something. I’m a hair girl! I can’t help it. Kyle didn’t have a chance. I was covetous of Samir’s hair. Samir’s hair should have an Instagram account because MS’ers all over would follow him.

When Samir was doing my visual fields test and I had to stare at his fingertip and at his nose over and over again, I kept finding myself staring at his hair and he would say, “Down here, Maribeth” and I definitely blushed.

But I digress. After we went through the whole visual field song and dance again, twice, with each student, TGS talks to all of us as if we’re buddies. I think I’m officially one of them, now, based purely on the volume of times I’ve had to be in there in the last 6 months. He asked Kyle what we learn from the visual field test (the whole follow my finger, look at my nose routine). It was almost like TGS knew I was about to blurt out the answer and he look at me and silently shook his head ever so subtly, “Don’t.” (So I didn’t.)

Poor Kyle whiffed on both of his quiz questions. The other one was, “Can you tell me what other drugs beyond meclazine we sometimes use to manage vertigo caused by brain lesions Kyle?” I knew! I’ve been a vertigo researching fool these past 6 weeks or so. I KNOW THIS ONE TOO…I got the look again. I kept my mouth shut, again.

TGS is not pleased that his students appear to be dullards on this subject. Kyle actually stuttered. Poor Kyle.

“Sometimes we use benzos for this reason and we’re going to try that here to help Maribeth out. Also, Maribeth, this drug may kill two birds with one stone because I’m putting you on another course of high dose steroids starting today,” deadpanned The Most Great of all Scotts.

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

“Ugh.” I actually said this. “Isn’t there any other option? I mean MORE steroids? I’m kind of tired of the steroid effect TGS. I just am. I know that makes me a shallow asshole but there has to be another option.”

“Well, there’s plasma replacement blah-blahtity-blah but that is an in-patient experience, is not likely to work and is really a terrible idea so we can probably agree not to go there, can’t we? You have an aggressive disease. A lot more aggressive than we thought. You like being aggressive in treatment, right? We need to give you a chance. This should help you over this hump until your next Ocrevus infusion in early November. I’m still hopeful this drug is going to be right for you, Maribeth. But you do have me re-thinking the two month flush for patients like you. I may be changing my mind on the necessity of things getting this bad before they get better.”

He has a point. I’m nothing if not aggressive.

I do the walking tests. He continues to be concerned that I am back to pre-Tysabri levels of impairment (old symptoms have come back with a vengeance). Couple that with the vertigo that just won’t quit and he’s pretty sure I can cancel my appointment with the Hearing & Balance Center. (I’m kind of bummed. I was planning to go in costume since it’s kind of close to Halloween. I was going to dress up as a crazy old woman with a broken brain who’s lost her damn mind.) So, no Halloween fun for BethyBright. Boo.

I look down. I know I am beaten. He’s not called The Great Scott for nothing. I’ll take the fucking steroids.

Here’s the thing. I know some of you get this because you have been there. Hell. You might be there right now. You know what I mean. It’s a period of time so bad that weird shit starts to happen to you inside of your broken brain. You have thoughts that people like you just don’t usually have. You think to yourself, as you consider these random scary thoughts, “Huh. I don’t normally think things like this.” That’s another concerning relapse-associated “symptom” that the docs don’t talk much about.

You find yourself mildly afraid to leave the house. The outside world starts to represent potential injury and/or embarrassment or both, so you find yourself not wanting to go out there. At all. Ever. But staying in here? That’s another story entirely.

Staying in here is where it’s relatively safe (at least you can puke in private?). But staying in here sends a girl down some dark rabbit holes…

  • What did I do to deserve this? What am I being punished for? (I have some ideas, but I thought I was over all of that. Guess I’m not.)
  • Why do I live in this house that means I need help to do the most basic stuff? Why do I deserve to live in this happy place with so much freaking STUFF? I should give away all of this cursed stuff. We’re all under the same evil eye, my stuff and me. It should go, too. It’s cursed. I am cursed. We should all GO.
  • Why do I have so many damn cats? Why do they need so so much? I should never have been optimistic enough to get all of these needy, bitchy creatures. I should have known it would all go to shit! It usually does. Literally. Then I’ll need even MORE help to carry that shit out of the damn cursed house.
  • Why would anyone want to talk to me now? This utter nightmare is the ONLY thing I ever think about, let alone talk about. When I talk about it to my visitors, those kind enough to come to me for human contact, I find myself on my own damn nerves. There just isn’t a way to sugar coat any of this. I know if the tables were turned I’d leave your house feeling sadder than sad because we used to have so many other, more pleasant things to talk about. Now I have this. Only. This.
  • I’m alone. I rely on the graciousness of others. This is my reality. I am blessed (#blessed – few things irritate me more than #blessed I’m not entirely sure why but every time I see it, it sounds ironic to me). I have so many friends, family and buddies who help me in so many ways because they love me. Hell. They even help me by just giving me tiny little happy surprises! Like the card last week that I needed at just the right moment. But really how long can any of this last? People WILL get sick of me not getting better. It’s just inevitable. I’m so needy that there isn’t any realistic number of humans on the planet to fulfill all of my damn needs. It’s just not physically possible. I mean I am with me all of the time and I’m sick of me not getting better. What happens when I get worse? Or when I get MUCH worse…I can’t really think about that for very long or I go to darker places still.
  • Are there darker places than this? Oh I know there are. I have a feeling I might visit them before this is all over

I may have seriously entertained not taking the damn steroids. I definitely considered it, I may have come close to skipping my stop at the pharmacy. I’m so tired of all of the stupid side effects of fucking steroids! Why do I have to have a disease that makes me LOOK bad too. Why couldn’t I get a disease that makes you look scarily thin? Trust me. I know. These are idiotic, stupid pointedly indulgent obnoxious thoughts. I thought these idiotic thoughts the whole way home from seeing TGS.

Then I thought about how I had a virtual anxiety attack over leaving my house today. I have never had a true anxiety problem in my life. Other problems, sure, but not anxiety. And how doing basic chores has me so exhausted that I think my entire life is going to feel this way. For all time. Forever and ever until I just give up and stop, stop doing all the things let it all go to shit and just sleep. Because I am alone I am and will always be…This, my therapy loving friends is what my precious Cheryl would call “catastrophic thinking.”

Then it hit me. Out of the blue in full-on pedal to the medal on my way to Catastrophy USA, I finally got my head straight. Like BOOM.

The disease is talking right now. Not me. The disease is talking stupid because it wants to win. Its only reason to exist is to ruin me. It wants me to be depressed, full of newfound anxiety, falling apart at the seams. It wants me to hate on this body it wants to feed on because it makes the whole process so much easier, more easily digestible. Like tenderizing meat before you cook it. Those are NOT my thoughts.

When I feel better, my thoughts will be my thoughts again.

I took the damn first dose of bitter pills. They won’t be my last. I need to accept this and I have. I’ll eat sensibly and try not to go on an ice cream binge (prednisone needs no assistance in achieving maximum bloat) but I will have a couple of spoonfuls every now and then if it will give me some much needed joy.

It gets really dark in this world. Scary thoughts can kick you right in the gut and have you questioning your sanity. Your fundamental worth. Then you get to that point where you start to realize that maybe a nice gentle marinade would be ever so much more appealing on the meat than all of that beating it with a spiky metal mallet has been.

(I know at least one of my blog followers read that last paragraph and giggled thinking, “She said beat the meat! Hee Hee.” You know who you are!)

I’m going to marinade in some prednisone and some calming benzos and let this thing ride. Cliches are a thing because most of a time, they have more than a little nugget of truth inside.

And you know when they say it’s always the darkest.

A visit with the wizard

I was nervous looking at my calendar and realizing I had an appointment with The Great Scott yesterday.

I always have this irrational fear that I'm not doing my MS quite right. I used to walk out of that office feeling like a failure when TGS would ask me, "When was the last time you walked a mile, Maribeth?" It took everything I had in me not to burst out laughing, not in a good way, and then lunge across his desk and go for his throat. I'd leave feeling like a failure. I should be doing this whole MS thing better. Getting myself checked into the hospital as an in-patient while TGS was off on vacation felt like the ultimate failure.

The thing is, though, without me noticing,  The Great Scott and I have started a more productive phase of our relationship somehow. He has finally gotten to the point where he knows I'm no push over and he also knows that nobody wants me to be better at having MS more than ME.

I think he's pegged me for the chronic over-achiever I am. He seems to finally understand how much I hate this entire thing. I hate it from beginning to end. Being in the same place has allowed us to move on to  a new phase of our relationship. The one where he stops trying to bullshit me about walking a mile and starts talking to me straight about more realistic things.

I got taken into the inner sanctum early by a nurse, and I had left my bag and my phone out in the lobby with my nephew who served as my ride and support for the day since I am not driving-ready just yet. I still get too dizzy when I'm moving around to trust myself behind the wheel of my car. So I just had to sit there, in the sterile room, quietly with my thoughts while I awaited the appearance of TGS.

I steeled myself for the lecture. I wondered how he would react when I freaked the hell out when he asked me when the last time I walked a mile was. That quiet time had me all balled up and anxious. That was probably the longest I've ever been separated from my phone in…years.

A soft tap on the door preceded his grand entrance and the first thing I noticed was that TGS was tan. He was looking all browned up and healthy and I suddenly got a mental image of him wearing madras shorts on some fancy Caribbean beach somewhere sipping a mai tai and I almost giggled.

"Well, there she is," he said while ushering in two other doctors. "I'm running a little behind, Maribeth, so Dr. A and Dr. B here are going to talk through the progression of events that brought you to the hospital and then I'll come back and we can talk next steps."

Dr.'s A and B were very kindly young men. I had to go through the whole progression of events from my first Ocrevus infusion in May…then on to my landslide in June resulting in my short stint on high-dose oral steroids, and my subsequent slide into feeling slightly off balance and thinking maybe I needed a cane and/or physical therapy, to the fateful day when I woke up all wonky and sick that landed me in that hell hole they call a Level One Trauma Center for four very long and miserable days.

Then I had to explain how I was discharged without so much as a strip of paper or any directions on what to do next. I also explained how the three different neurologists that I saw in the clink had three different theories on what landed me there.

Dr. A explained, "The doctors in the hospital checked you for stroke, which this clearly was not. They diagnosed you with vestibular neuronitus not a relapse of your MS. I'm not sure what I think about that, but we will see what Dr. Scott has to say." And as if on cue, after a soft tap-tap on the door, in walked in Malibu TGS looking relaxed and friendly.

They all conferred, all of my many doctors, and The Great Tan Scott looked at me and said quite matter-of-factly, "So the doctors in the hospital who saw you said you have vestibular neuronitus. I disagree one hundred percent. Those doctors were wrong."

I said, "Well, respectfully, my first reaction to hearing that news today was…how dumb. When you hear hoof beats, think horses not zebras. It made zero sense to me."

I actually made TGS laugh!

"I was about to use a similar analogy but yours works just fine. This is obviously an ongoing relapse, Maribeth. You've had a rough time. But I still think the new goo is going to help you," he said.

"I feel like this whole thing is one big blur of really bad timing," I said to him. And he agreed with me again! I am now officially in crazy town. Vacation must agree with The Great Scott.

"I think once you get beyond this vertigo, you'll start getting back to a better place but this is a rough patch. Nearly 40% of my MS patients experience this kind of thing. A lesion the size of a pin prick could be present in your brain stem in the region of the vestibular nerve (since you already have so many lesions in the brain and C-spine, this is the obvious conclusion). The lesion could be the size of a pin prick, not visible on your MRI, but that doesn't mean it's not there. Or as you put it, horses for sure and definitely not zebras," said TGS.

Other little gems he dropped on me during our brief visit (in his words):

To me…"Vertigo can be stubborn. It can last weeks, or months and even years. You can't do anything about it but wait it out. If you're not feeling better in  few weeks we may consider an outpatient stint at the Vestibular Rehabilitation Unit at Allegheny General. But that shouldn't be necessary." (Good christ on a cracker…a few more weeks of this?!?! I am in danger of losing my mind if I cannot get back to my life sooner than that. I think the look on my face conveys this reaction completely, therefore I do not verbalize it.)

To the other doctors… "Maribeth here has progressed a bit more rapidly than is usual for a newly diagnosed MS patient. She's still in the thick of it and is struggling with a higher than normal disability level than is usual for a newly diagnosed patient. Hence our aggressive approach to her therapy." (Yikes. He never said that out loud to me before, but knowing he thinks the same things I've been thinking somehow made me feel validated.)

To me again…"You've had a rough time. I am confident the new goo is going to be great for you. I remain fully optimistic that we did the right thing. Your disease is just a bit more active than usual so it's going to take you a little longer. Usually new patients level off within five years or so. So it's coming for you, the feeling better part, it's just that you have no choice but to wait it out." (FIVE YEARS NOW?!? Jesus. I'm going to feel better when I'm 55 years old?!?? Good lord.)

To the other doctors again… "What is the mechanism that makes Ampyra work Dr.A?" And Dr. A clearly had no idea because he was literally stuttering, so I piped up, "It's a potassium channel blocker. It smooths out the electrical signals between my brain and my legs. It only works for 30% of patients who try it but it clearly works for me since when I don't take it, I cannot walk." The Great Scott looks at me sort of surprised, like, and says, "Well, you're exactly right. Are you looking for a job now, Maribeth?" (He made a joke! A funny! Malibu Scott is a lot more mellow than pasty not-tan Great Scott. Also I think Dr. B may be mute because I've not heard him speak this entire time.)

Back to me again… "There is no reason for us not to continue to be optimistic, here, Maribeth. I know this has been discouraging. Hospital visits are not fun. But if we're patient, I think the new goo is going to get you to a new normal that you can manage. Listen, today, fewer than  10% of newly diagnosed MS patients end up in a wheelchair. The therapies are so much better now than what we had to work with in the past. A wheel chair used to be a forgone conclusion but it's now very unlikely. I know you are discouraged. But I remain optimistic on your behalf." (Well, at least one of us is. I guess I'll take it.)

On the topic of PT…"Let's give you time to heal and get back to your office first. You need to take this slow. Do not prolong the situation by pushing yourself too hard. Rest and time are the only things that are going to help this situation. I suggest you try and give yourself plenty of both." (Wait, WHAT?!? This, from when-did-you-last-walk-a-mile-guy? I am so surprised I am rendered speechless. A rarity for me. TGS seems shocked by this as well.)

And SCENE.

My nephew and I went and had lunch after my appointment. Being a passenger in a car was not great for me. I was super woozy. All of that walking around in the outside world, where I've been absent lately, turned out to be a bit much for me. I realized I had a raging head ache. And I was feeling even more nauseous than usual. After my nephew helped me with a few small chores and many laughs (that kid…he cracks me up), I planted myself in my living room chair – the one that I feel might swallow me whole one day since I've been spending so very much time sitting in it. My chair and me are becoming one. I try to look at my computer to answer a few work email, and I realize it's no good. I am going to be sick.

I drag myself through my kitty chores, get upstairs and put on my jammies and prepare to lay flat on my back until the sick feeling goes away when another more powerful wave of nausea hits me. I dig in my bedside table for the handy puke bags I stole from the hospital, and you know what happened next.

I felt immediately better. I lay down. I read a short three chapters of my next book…and I go to sleep. It was just starting to get dark when I put my book down. I didn't care.

I'm following doctor's orders. When The Great Scott tells you to rest and take it easy, you rest and take it easy. I am going to try and cultivate his infectious optimism and hope that I am back in outside-world-form within a few weeks. I know it seems like a really long time. Because it is a really long time. What MS has taught me this week is that I really have no true notion of what a long time really is. A few weeks that feel like a lifetime? It could be worse. It could always be a whole lot worse.

One more tiny piece of news.

When we got back to my house after our post-doctor appointment lunch, I had a few packages on my front porch. One of them was marked with the words "fashionablecanes.com." My nephew grabbed it up and was like, "Yo, let's see if this cane is really fashionable enough for you, AB." And we laughed. We opened the box and we met my first cane.

I'm calling him Stan. He is rather basic, but reliable. He isn't flashy but he will help me when I'm no longer unable to drive, but I might still need some support to keep from holding on to walls, buildings and random strangers whilst walking around downtown Pittsburgh.

I still need to get the hang of walking with Stan. Somehow, I feel less awkward drunk walking around town grabbing on to random stuff than I do when trying to walk with Stan around my living room. I'm sure I will get used to him.

I'm a loner, we know this, but sometimes you need a little help from a friend named Stan. And Malibu Great Scott. I'm going to miss his tan when I see him again in November.

The tortoise and the hare (guess which one I am)…

I'm working on adjusting my expectations but I have to be honest, it's harder than I want it to be. Listen. I've never been the hare. Even at my best, I've never been what you would call naturally speedy or lithe. I've always been rather clumsy which in turn meant that I did things slower than the average bird. I also might have been described, by people who know me well, as a person who is either all on or all off. I am either 100% dedicated to my task or I want nothing to do with it at all – there was very little middle ground in my life. I believed in black and white. Gray was a shade in which I didn't do so well.

Fast forward to the last 18 months after my diagnosis of multiple sclerosis. I was teaching myself to do life a little differently. I had to learn that my brain might want to do all of the things – but my body probably had other ideas. There was a lot of pain and a lot of feeling like I was running on empty. I was learning – I didn't like it. But I was learning. I was learning that my life would be lived, from now on, in small chunks. In shades of gray.

I used to get frustrated by only being able to do two or three things in a row before I'd crap out. Those typical things might include…going to work, coming home to kitty chores and maybe some writing at night. Or on a weekend they might include going to run errands (one store only), getting a pedi and changing the sheets OR doing laundry (never both). I was learning.

In the weeks since my hospitalization, I've had to start thinking about a whole new level of slow. I'm down to one thing a day. ONE THING.

Yesterday, I took a shower. That depleted me to the level that I could  barely sit up straight while my dear friend trimmed up my hair and waxed my eyebrows in my kitchen last night. The day before that, my one thing was trying to drive to the grocery store to pick up groceries. It was super hot. I got super dizzy. That one thing was almost one thing too many. Lesson learned.

Today's one thing was running the vacuum. My cleaning lady had to call off this week so it will be two weeks until she cleans again. The cat hair situation was becoming a bit much. Every day I come down from my bedroom to plop in my chair to try and amuse myself for a few hours before I fall into bed again to sleep more, I am distracted by the tumbleweeds. Tumbleweeds of cat hair, blowing through my home, now that the windows are gloriously open and the breezes are flowing into my home. I had to do something about the tumbleweeds.

I did it. I vacuumed. I felt better. And I felt worse. This would be my one thing for today.

Today was a glorious day! The dew point is low and the temps are more fall-like than late summer. After my hair cut last night I was so tired, I forgot to eat. I was hungry this morning and even though staying in bed was tempting, I had to eat something. I thought for a hot minute that maybe I'd attempt to go out again today. Maybe I'd walk to the end of the block – see how I did. Maybe I would run to Target to get a non-slip shower mat (my stupid stick-on shower treads were an epic fail…they didn't last through even one shower).

But once I sat in the kitchen with the breeze flowing through the open windows eating a yummy blueberry muffin, I knew what I really wanted to do was to go back to bed. I needed more sleep. The sheers blowing in the wind in my bedroom relax me. The twinkling of the chimes that hang on the porch of my house and my neighbor's porch calm me. When the air is on, and the 17 fans I have running in my bedroom are running and the windows are closed up tight to keep the dreaded heat and humidity outside – I can't hear the chimes. I can't hear much of anything. It's like nothing outside of my room (or my house) even exists.

But today! Today was the kind of weather I live for. And while most people in the world would be outside doing outside things and having fun and traipsing around the city doing perfect weather things, like brunching and window shopping and maybe hitting up a farmer's market or a second hand store…I listened to my body and went back to bed.

I would like to tell you that I didn't feel badly about doing what my body told me I needed to do. I did have the passing feeling of regret that I'd waste this perfect day. I didn't waste it though. I had a lovely sleep. I had lunch with my mom (late lunch of course) on my porch. After lunch, I came inside. I ate a fresh peach and some cherries – my latest obsession since remembering that I love cherries and they were on sale on Thursday when I got my groceries. Of course I didn't know that, but my mom did. She's like a professional bargain shopper. I had forgotten how much I love cherries.

And then I attacked the cat hair tumbleweeds. Only on the first floor, mind you, I'm not a triathlete of home chores or anything. By the time I sat down to wind up the cord, one important chore completed, I realized how doing that one thing felt like working out.

I have to figure out how to do more than one thing soon. I mean, I can't stay home forever. I have to move around in the world. I have to try.

I can accept that I'm the tortoise. I always preferred the tortoise to the hare. The hare was a bit full of himself for my taste and it is the actual moral of the story by Mr. Aesop, isn't it? Slow and steady win the race. I guess I never realized how slow slow could go.

I'm going to try a few more things next week. I'm going to try to get myself to the office. My cat lady helper is only signed on through Monday. After that, I will have to handle the steps at least twice a day to handle the litter boxes. I am already training myself to accept that this might be the extent of what I can accomplish in a single day. If I shower, one or the other of those things will have to give since I'm down to one-a-day status. I can't help but wonder how long this snail's pace can keep up?

I see The Great Scott on Wednesday. I'm actually a little nervous about it. I am wondering what he's going to have to say about my whole stint in the joint and the decrepit condition of my body since then. It's been almost two whole weeks since I got out. I'm not dizzy 100% of the time anymore but I'm nowhere near pre-hospital levels – which in and of themselves were not really that impressive at all, if we're being totally honest.

I'm going to get a name for my PT so I can make an appointment with someone who knows MS and get that started, too. I wonder how I will have energy to do the things I need to do to make myself stronger when I'm in this one-thing-a-day phase. Where does going to physical therapy fit in? What will have to give (besides everything)?

Slow and steady win the race, said Mr. Aesop. I wonder if the tortoise had a chronic autoimmune disorder? I wonder if he resented his inching along the race track, noting every pebble, every twig, every leaf on every bush planted low to the ground while he kept his little tortoise eyes focused right in front of him so as not to get too overwhelmed by the task at hand. I wonder if he knew he would win the race in the end..Or if maybe he learned that the race isn't really meant to be won. It's meant to be experienced and maybe even learned from.

I wonder if he was ever afraid that he was going so slow, he was barely moving at all?

But how about this weather, folks! It's glorious. It's what my mom used to call perfect sleeping weather. I guess it's a good thing then, that I am going to be doing a lot of just that. Very soon. Again. I will lay in bed and read my scary book and remind myself that the tortoise actually wins the race in the story. He just does him (he always looks happy in the illustrations). The other forest animals cheered him on the entire way. He gets there, when he gets there.

I guess I will too.

Don’t call it a comeback

I got cocky again.

I know. Shocker but hear me out. I had a decent day yesterday. I got through the whole 8 or so hours of my work day without taking antivert. I participated in a day long training session that I actually enjoyed and felt included in even though I was on the telephone and all of my colleagues were together in a room. I thought it would suck and it didn't. I had a good day.

I went to bed super early after reading a few more chapters of my super scary book (another distraction technique). I had cranked the thermostat down to my usual nighttime temperature of 60 degrees and I slept like a damn baby.

But I'd gone to bed after putting the chain on the door – which was dumb because I should have remembered that Kathy would be coming in the morning around 5am and she'd not be able to get in the house. Sure enough my phone ringing at 5am alerted me to the problem. I stumbled down the steps to unlock the door and then stumbled right back upstairs to go back to precious sleep. I knew I was going to try day two without antivert and I needed the rest.

But when my feet hit the floor once my eyes opened for the second time today, I knew I wasn't all together steady. I still decided not to take the antivert. I needed to try. I had plans later that afternoon to go pick up some groceries I had ordered online. My mom insisted on coming with me – just to be sure I was ok. All I had to do was drive a few blocks to the grocery store, call the number and wait for the guy to come out and put the groceries in my trunk. Easy peasy!

As soon as I stepped outside I knew it probably wasn't such a good idea. It was muggy and humid today. The air felt thick. As soon as it hit my skin I shifted into super slow mo. I opened my car door, the car that hasn't been driven in over two weeks, and went to sit down when the wave of dizziness came over me.

"Do you want me to drive?" Asked my mom.
"No, I want to see if I can. It's literally like two blocks and we'll be going slow," I said.

She didn't love the idea but we were already in the car so off we went. It took longer than usual for the air to cool off the car that had been sitting in my driveway in the heat for two weeks. I felt like I was suffocating. But we drove super slow. Every time I turned my head to look at traffic or see if I could turn my stomach did a little flip. We got to the grocery store without incident. I drove through McDonalds so my mom could get her favorite treat of late (iced coffee sugar free vanilla) and I got a vanilla ice cream cone. Then we drove trough the ATM so I'd be sure to have some cash if I was gonna be home and taking deliveries and paying off helpers and such.

By the time we got home, I declared myself a failure. The dizzies were back. I felt like I could lie on the floor and sleep for a year. I had another meeting to get through today and a tentative plan to go in the office tomorrow for a quick company meeting I'd planned earlier in the week when I was feeling optimistic. But after my short foray into the outside world, I quickly realized that driving more than a couple of blocks would be idiotic. I'd be doing that meeting by phone. Goddammit.

I've read all the articles and blogs and talked to all the smart friends and experienced MS'ers about how hard it is to come back from any setback when you have this disease.

I knew, intellectually speaking, that this would be the case after my short hospitalization. But in the back of my broken brain, I always seem to think I'm going to be special. It might be hard for other people, I'd think, but not me. I'm pretty stubborn. I can do things. Lots of things. MS is different for everyone! I could be an exception. I assumed I would be an exception.

I'm an idiot. As it turns out, the only thing about me that is exceptional as it relates to my multiple sclerosis is my incredible ability to deny what's happening right in front of my own two eyes. I didn't really believe I'd be going to the hospital in an ambulance (an ambulance for chrissakes!) until we were pulling into the ER ambulance bay and even then I was still in denial. Every night that I was in the hospital, I'd convince myself that tomorrow I HAD to be going home.

The depths of my denial are really difficult to grasp. I can be laying here in bed at 8:30pm, feeling my limbs give out and my back begin to ache and my head slightly spinning and still wonder if maybe I could be a-ok tomorrow and make it into the office for my little meeting anyway…

…yeh. Not gonna happen. I'm not outside-world-compatible just yet. I'm hoping that after (another) weekend of extreme resting and generally doing a whole lotta nothing, maybe I'll be feeling outside world ready by next week? Maybe?

I guess it's firmly in the wait and see camp right now.

Something knocks you down, in this case quite literally, then the ripples emanate outward into your life like rings in a placid lake hit by raindrops. They get bigger and bigger until they finally disappear and the lake is still, like a mirror, reflecting your own image back at you. The question is, what image is it that you finally see once the ripples stop?

Well. That, too, involves a whole lot of wait and see.

I've mentioned to a few people I've been in telephone meetings with this week how much I suck at patience. I'm not so good at the waiting and seeing game. I'm more the make it happen and change it if you don't like it kinda girl. Maybe that's why I'm good at my job? But this is one very clear example of a situation where taking too much action can put you right back where you started…and we've already established how I will not under any circumstances be going back to the hospital any time soon if I can help it.

Even if it kills me, I need to find my inner zen and wait this shit out. Then I need to take baby steps, literally, before I can really walk. Then I will start PT and little by little I will get stronger – but it will be little by little. That's just how this stuff works.

Sometimes I think this is happening to me because the universe is trying to teach me an important lesson. Slow down. Stop trying so goddamn hard. Just be. Just breathe. I wonder how dense I must be for the universe to think she needs to give me a freaking chronic illness with which to teach me these important lessons. Couldn't the universe have just made me like yoga?

Nah. I'm a "learn the hard way" kind of girl. I will be dealing with these particular ripples for as long as they feel like sticking around and I will just have to accept that.

On the upside…I can read a bit easier and also watch television. I bought some new sticky tread things for my death trap of a shower hopefully making getting clean not so much of a feat. I also have mini-hair and eyebrow day in my kitchen tomorrow evening because my beloved friend and hair wizard knows me well enough to know I need to be cleaned up a bit in order to feel closer to normal and going to the salon right now is also pretty low on the list of things I should be doing right now.

It will all work itself out. I will be ok. I just don't know when. And that just has to be ok.

Life on the inside, part deaux

So as most of you already know, I was rudely awakened at 3:45am with the arrival of my first roommate. One of only three such roommates I’ve ever had in my life who were not related to me in some way. 

It was rude. Bright lights. Outside voices asking about symptoms, the ins and outs of advanced directives, the ordering of snacks, the assemblage of various monitors and beeping apparatus. So. Yeah. No sleep again for this girl. My roomie is really nice. But now I have to hate her extra large because she’s getting out of here at 2pm. Today. Why?!? Why not ME?!? And yes. I am a bad person. But at least I admit it. 

I made some progress today, however. I posed what I thought was a perfectly logical and valid point to my neuro attending team. Why in the world would anyone give any human being a mega dose of Solumedrol at midnight? I mean, that practically ensures a sleepless night when sleepless nights are already likely based on my random self inflating bed with a motor located right under where my head lays each night. It’s like a water bed but with air. It gives me straight up motion sickness. But that is neither here nor there. Solumedrol at midnight! I’m no doctor. But that just seems like every kind of bad medical idea anyone’s ever had. 

The answer? Well. Because that’s what time the order went in. Oh. Right. That makes total sense then. 

My answer? So change the mother humping order you fools! I want my mega roids at 6am and 6pm. Period. There will be one day where I’m on a little extra roid juice, admittedly that’s not ideal. But want to know what’s an even worse idea? Getting pumped full of steroids and also expecting to sleep. Want to know what makes all MS symptoms worse? Two things. The horrible relentless heat. And, lack of proper rest. 

Proper rest tonight, in particular, is critical. 

Tomorrow I am being evaluated by the PT team. It’s up to them entirely whether or not I get released after my last Solumedrol infusion tomorrow at 6pm OR if they decide I am a danger to myself, they will keep me here until they can find me a room with an in-patient rehab unit. 

Oh. Hells no. Hell hell hell NO. I am not allowing that to happen. I’m adamantly opposed to in-patient anything after this debacle. No way. I’ll use my roid induced strength to stage a violent coup resulting in me wobble walking to the nearest exit and flagging me down a damn Uber. 

So I’m gonna take as many drugs as I can to help me sleep, even if I have to have family members sneak them in via body cavities, so I am well rested and not quite so wobbly tomorrow for my big test. I’m definitely doing better. I mean I can probably walk to the bathroom myself if they’d just let me. I haven’t thrown up in 24 hours at least. I’m practically an elite athlete right now in MS terms. Maybe ginger ale is some kind of magical life elixir and I just never knew about it before. 

I’m making up a new song. It’s by Beth Street and it’s called “No Wobbly” and it goes a little something like this…

I like the way you work it (no wobbly), girl ya got to walk it out. I like the way you work it (no wobbly) girl ya got to balance out. She’s got dirty hair rolling with the phatness. Solumedrol giving her the head fits. Street knowledge by the pound. Seen ’em close up with her face on the ground. But got to get her home stat so no wobbly’s where it’s at. 

My most sincere apologies to Blackstreet. But shorty’s got to get home before she loses her damn mind and Wobblies stand between me and that goal. All no wobbly vibes coming my way will be graciously accepted. 

I will not be an in-patient anywhere ever again as god is my witness. 

So I have to roll now. I have to plan this going away party for my roomie. Drink ALL the ginger ale. Load up on roids. (I was told I may require a xanax after my short term roid loading that has to happen today to get me on my new schedule. That should be interesting.)

And tonight is turkey dinner. I mean who’s really winning here? Turkeys are great walkers! It’s gotta be a good sign. 

#nowobblies

Sing it with me, folks. The puffy village is calling my name and I must get back to my precious before I go all Gollum on some PT hobbits tomorrow.