Random thoughts while waiting for my car to de-ice

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

You know my constant debate…

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

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

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

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

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

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

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

So I did just that.

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

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

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

Where was I?

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

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

Where was I?

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

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

Ever.

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

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

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

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

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

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

Kind of.

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

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

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

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

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

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

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

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

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

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

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

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

We always forget to say “for now.”

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

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

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

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

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

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

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

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

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

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

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

I have to tell you…not me.

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

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

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

Yet. It’s just not true YET.

The effects of being broken

While watching one of my favorite Sunday morning shows, CBS This Morning, I always find something to inspire me, educate me or just widen my mind. We should be clear, right at the get go, that I record this Sunday morning tradition and watch it most often on Sunday afternoons when I finally wake up. Today was no different in many ways but the source of my inspiration this time came from an odd place.

It was an interview with Sharon Stone. Sharon Stone of all people! I think I had an impression of Sharon Stone in my mind that positioned her squarely in the place of noted kook, beautiful older woman, famous mostly for THAT scene in that movie where she showed the world her personal, uh, situation in that particular interrogation scene. I thought of Sharon Stone as a privileged, rich celebrity with an awesome life. This particular interview with Sharon Stone taught me some things and blew me away with how much I relate to this woman who is a movie star and completely unrelated to and entirely removed from anything in my decidedly non-celebrity life.

You can watch the whole segment here. I recommend watching the show in general, really, because today’s segments were so especially good, but we’ll focus on the segment about Sharon Stone. She said something, many things actually, that hit me squarely in my core but mostly this one thing:

“…Others are not that interested in a broken person,” said Stone.

She was referring to the time after she experienced a health crisis, a stroke that rendered her unable to walk, or talk or act in anything at all. She had to re-learn how to live. Then she had to figure out how to re-enter a life that seemed impossible to break into (again) even with all of her obvious advantages. The segment made me think differently about Sharon Stone but it spoke clearly to me of things I understand, now, since diagnosis with multiple sclerosis.

First things first, working in advertising has nothing on Hollywood but you might be surprised how much of what we do when we work in advertising is about appearance, performance and showmanship.

I always tell people that I can tell when I interview someone if they’ll be successful in advertising within five minutes of talking to them. There is something you can’t put your finger on or name really, but you can feel when someone has it. It’s that need to put on a show. It’s the need to command a room or want to be the center of attention. The ad business attracts creative people who revel in creative things but excel in leveraging creative ideas to persuade groups of people to do certain things. Believe something. Do something. Buy something (usually whether one needs that something or not).

But our ability to do all of those things relies on a basic theme: Confidence that you CAN. Confidence that you can do this better than someone else can. You love being the alpha (even if you hide it on the outside). You need to be in the room, have a say, share an opinion. You have to believe that you make a difference to a situation just because you and your brain happen to be sitting in the room. You have to believe in yourself as a problem solver. Someone people want to listen to. Someone people believe knows how to make magic happen.

It’s all a bunch of blowhard foolishness. We all learn that eventually, as we get older and wiser in this industry, that what we do is not quite as noble or cool as we once thought it would be but sometimes, other times? It still feels pretty cool. I’d be a liar if I didn’t admit that. I’m like the quintessential ad guy (girl). I need to be in the room where it happens. I need to be pulling the strings. I love my job even when I hate it.

Once, when I was really young in the business, I had a boss/mentor guy who said lofty things to me that were pithy and generally sounded true most of the time. One of those things that stuck with me was when he said, “You know what kid? The bottom line is, 90% of success in this business is just showing up.”

Christ, how that haunts me now!

Showing up is really hard for me now. It’s not only because of my mobility challenges, it’s the combination of the MS trifecta of challenges including intense general pain, trouble concentrating and crippling fatigue. All of those things contribute, oddly, to my ability to move my legs.

Imagine my anticlimax when I finally figured those things out recently! It’s all inter-related just like my nervous system controls everything in my body from top to bottom, inside and out. It’s all connected! It all keeps me from feeling whole. It leaves me feeling broken much of the time, while also feeling completely frustrated that I know in my literal cells that I am still me and that I can still do what “old me” used to do. I know this. So completely! I just have to figure out how.

I told the ‘showing up’ story to a colleague recently when we were discussing my inability to be physically present at times when I feel that it would be ideal for me to be so. I explained to him how this notion haunts me. It haunts me so much, in fact, that I have movie-like nightmares on the regular about terrible things happening to me in work situations.

I vividly dream about people I trust implicitly betraying me horribly in medication-induced detail and vivid color.

These dreams are so real, I wake up feeling shaken and unsteady. I wake up feeling sick. I can see the rooms, I can feel my legs struggling, I can remember facial expressions and what clothes people wore. On top of making me feel sick at the mere idea of something like my dreams actually happening to me, I also feel sick because I know for certain, 100% certain, that something like what happened in this particular dream would never happen. I am surrounded by people who want me to succeed. People who literally not only respect me but also love me. I am 100% certain about this, as well. So I wake up feeling sick and also guilty! How ironic.

Last night’s dream was a vivid representation of an event that will happen in real life tomorrow night. My boss’s boss (my boss’s title starts with a “P” and my boss’s boss starts with a C and ends with an EO), is coming to town to join me for dinner with clients. Tomorrow is actually a company holiday so I will be off work all day but it was the only day we could find that worked for all parties, so dinner on a day off it shall be.

This dinner only involves minimal effort. I need to get to the hotel where our CEO will be staying, pick him up, drive to the restaurant and eat dinner with people I genuinely like and respect, drive him back to the hotel, drive myself back home. Easy peasy!

In my very vivid dream last night all of this started in a blizzard.

In my dream, I was upset that I had to wear my winter boots to dinner instead of something more snazzy. That was the first sign that things were going awry. The second hit me when we arrived at the restaurant for our reservation to meet a large group of colleagues. I had never been to this restaurant before so I had no idea what to expect. As we approached, I saw what amounted to a multi-level tree house-like structure that had wooden steps, covered in snow mind you, circling all around the structure. Kind of like fire escape stairs? But wooden and running from floor to floor in a five story structure. The stairs had twinkle lights on them.

Our table was in a room at the top of the tree house, because of course it was. In my dream scenario, there weren’t clients at this dinner but people from my team and from our home office. They smirked at me as I clung to the wooden railings, dizzy and weak. I asked where the bathroom was and was told it was on the third floor (I’d have to go back down and back up the stairs again). I remember how painfully cold it was and how afraid I was of falling. I made it back to the table, out of breath and dizzy, and sat down but I couldn’t see anyone. My eyes had gone all blurry. I could hear people snickering. I heard someone say, “Yep, this is what we get now.”

Guys, it was so vivid! Wood grain on the stairs, sparkles in the ice where the twinkle lights hit the snow on the stairs, the numbness in my feet and legs, the tingling in my hands, the fact that my hair was sticking up in the back in the wrong direction and how embarrassed I was that I hadn’t been able to take a shower before my dinner meeting. I remember my panic thinking about driving home in the dark, in the snow, when I couldn’t really see anything.

I woke up shivering. I’d thrown the covers off in the middle of the night and I was actually cold in real life. I actually DID have to go the bathroom so I stumbled down the hall to pee. I shook my head to get the images from that crazy dream out of my mind.

This was the second similar vivid dream I’d had in a week about being “outed” at work for being useless. What is happening in my brain for heaven’s sake? I started to question my additional dose of baclofen that I’m now taking at night because that shit makes me have these crazy, movie-like dreams that freak me out. I know it will stop eventually as the side effects from the increased dose settle down but, damn. Dreams that vivid are scary as hell.

It occurred to me, then, how stressful it is for me to keep trying to figure out new ways to “show up” even when I can’t actually, physically show up. What doesn’t come out in my daytime thoughts finds a way out in my medication-fueled epic intense dreams. It’s me, again, not giving myself a damn break but subconsciously preparing myself to fail.

Here’s the thing. I do show up. I show up now more fully than I ever did before my diagnosis because I have to try harder now than I’ve ever had to try.

I used to do this job effortlessly, with barely a thought. It comes that naturally to me. I’m a born performer (hidden inside of a secret home-body). Now, I can’t always be in the room where it happens physically but I work really hard to be present, to make myself known, in other ways. I work harder. I talk on the phone a LOT (and I truly hate talking on the phone). I do my best to physically show up when I can and when I can’t, I do my best to prepare others to show up in my place.

It’s been working like a dream, to be honest. Things at work are still working. Our office is still successful. We’re still making money. We still do great work. I still show up. And even more gratifying is watching so many people I trust show up in my place and perform like the pros they are. It’s working!

Listening to Sharon Stone talk about how she is coming back to performing after years of working hard to physically come back, but this time in an entirely different time of her life, in an entirely different head space, spoke to me. I relate to that. I also work in an industry that worships youth and appearances. I’ve only been dealing with this come back of mine for a little over two years so I can’t really claim it to be a success. Half the time I sit back in awe wondering who’s life this actually is! But listening to Sharon Stone, of all people, made me believe that coming back is actually possible. Even when you think it’s way too late to even consider such a thing. I mean, Sharon Stone is over 60 and a woman in Hollywood. Those aren’t good odds even for someone that looks like Sharon Stone with all of her obvious financial advantages.

I know my real experience of this dinner meeting I have tomorrow will be nothing like my dream experience.

For one thing, I’ve already showered and we all know that’s half the damn battle. For another, I know exactly where I’m going because I took the time to Google that shit this afternoon, just to be safe. It’s weird to have a client dinner on a day off but even this detail actually works to my advantage! I get to rest all day, giving myself the best chance of holding my shit together for a few hours after dark, when I’m usually safely at home in my jammies.

This might be the best case scenario possible for someone like me to have a client dinner with corporate bigwigs. It’s all going to be fine! I will be fine. I will do what I always do and hold myself together while others are looking. I will show up physically and mentally this time. And it will be good. Nobody but me will know how hard it is. This is also good. It’s part of how I show up, now.

Oddly, the weather is calling for snow showers tomorrow night. I couldn’t get that lucky, could I? But I won’t be alone. I will have a supportive person with me and I will be dining with even more supportive people. I am almost as lucky as Sharon Stone (though I don’t live in her fabulous house with her fabulous wealth, but I do OK for a regular person). I’m pretty fortunate in more ways than those in which I am not.

I will keep showing up in as many creative and unusual ways that I can because I love my job, I love my colleagues and clients, and I need to hang on to as many parts of myself as I can, for as long as I can.

And that’s that.

Here’s an image I relate to right now, maybe more than the one above of the broken thing.

This is a very, very old ceramic tea pot. It belonged to my grandmother, I think, but I can’t really be sure. To be honest, I can’t remember. You might be able to see that it’s been broken several times and glued back together several times, as well. I keep it because I love it. I can’t explain my penchant for tea pots (and salt shakers) shaped like other things. I’m weird that way.

Now I will keep it for another reason.

Tegan & Sara, concentric circles and failed resolutions

One time, quite a while back, I had my heart broken pretty badly. Correction, that one time in particular, I had my heart crushed to smithereens not by being left abruptly (which I was) but by the words uttered to me when I asked my then-boyfriend how he could just leave me for someone new after all we’d been through together.

The begging for an answer went on for weeks! I couldn’t stop myself beating myself up, beating him up even more, with incessant need to know why. “How could you?” I whimpered. “How could you leave me for her?” And then one day he said the fateful words I never needed to hear…

“She was just too good to pass up,” he said.

Wait a minute. I thought I was the one who was too good to pass up but apparently suddenly I’d taken a turn into pass-up-able territory without anyone ever clue-ing me in. I was mistaken. I wasn’t too good to pass up at all! SHE was. Well, shit.

The words don’t pack the same punch they had almost 20 years ago, of course, but they pop into my brain sometimes at the oddest moments to remind me that there are, indeed, some things one can never really forget but that doesn’t make those things right or true.

Sometimes the thing that jogs these words back into my mind is a particular song, that I happen to love, that sums up the flat-out flummoxed feeling I was left with once I was actually, suddenly left:

“Where do you go with your broken heart in tow
What do you do with the left over you
And how do you know when to let go
Where does the good go,
Where does the good go?”

That’s from the song by Tegan and Sara called “Where Does the Good Go” and if you’ve never heard it, check it out. It sounds sad, but for some reason, it always makes me feel happy when I hear it. Perhaps because it’s right in the sweet spot of my vocal range and I can really belt it out in the car when it pops up on shuffle?

Whatever the reason, it keeps popping up on shuffle again and again in these last few weeks and it’s starting to mean something different to me now.

It’s not so much about an age-old heart breaking memory to me anymore. It’s more about life now. My life. Your life. Life in general that is always changing, always knocking us on our collective asses only to surprise us with unexpected joy before it knocks us on our collective asses again, then back to joy and repeat. The stanza that speaks to me now is this one:

“It’s love that breaks the seal of always thinking you would be
Real, happy and healthy, strong and calm
Where does the good go,
Where does the good go?”

I used to believe there was nothing I couldn’t do, nothing that could really ruin me. I knew that even when my heart was broken, I was strong, happy and calm. I was healthy. That thing we tend to take for granted while wishing to be thinner or prettier or stronger or more talented or able to run faster. Health is the thing I never questioned. I believed somewhere way down deep that nothing could break me.

Along the way, these past two years since my diagnosis with MS, I lost that fundamental belief. It threw me for a serious loop because if there is one thing that makes me who I am – not the way I look, what I do, where I’ve been, how much money I make, how successful I’ve been, the car I drive or even how many cats I have – it is my fundamental belief that nothing can break me.

That’s how I used to feel. That unrelenting optimism in my own heart protected me. I would always be happy, healthy, strong and calm, no matter who broke my heart or what might make me feel otherwise for a short period of time.

Lately, I’ve been haunted by the notion of concentric circles.

I guess it’s somewhat obvious but I see my life in a series of concentric circles that once were wide and varied and full of new and exciting colors, lately the circles have gotten smaller and smaller, more focused and built of fewer colors than I’m used to, a lot like my predominantly black wardrobe. I think this notion about life as a series of concentric circles began in 2015 right after my diagnosis when I was freaked the hell out but still not fully aware of what my new life would be like. As my health started to go downhill, the circles started to get smaller, but in tiny increments. Nothing too scary. Then with my first big relapse in mid-2017, the circles were suddenly so small, that sometimes they threaten to suffocate me.

And yet they don’t. I’m still here.

There’s always a time period, a date or line in my mental sand for when I am expecting to feel somehow better. Those dates come and go without feeling better and it gets the better of me. It makes me feel like the good up and went. It makes me wonder, in the great words of Tegan & Sara, “what do you do with the left over you.”

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

I’m going to try a few things with the left over me, and see if any of them stick…This is my honest attempt to kick myself in the ass and start focusing on the center of the circle – I think that might be where the good actually goes.

I’m in the center. The center of my circles is me.

So for this, the last day of 2017 looking ahead into a brand new set of 365 random days, I’ve made some commitments to myself. They’re not complicated:

I will try to remember that some pretty crappy shit has happened to me in this life so far and none of it has killed me yet. This disease is not likely to do it either (not even death by embarrassment).

I will stop judging myself and my abilities (or lack thereof) so harshly. It’s not the world that is ashamed of me, it’s ME that’s ashamed of me. I need to stop doing that. I walk funny. I stay in my house a lot. I wear pajamas a lot. I read a whole lot & go out a whole lot less. So what?

I need to give myself a break from all the judging.

I do need to try walking a little more. I do need to stop thinking of myself as no longer good for anything I used to be good for (I could make a list but some of those things would be pretty embarrassing so I won’t). I’m still good for a lot of things! The good hasn’t gone. It’s just gotten more inwardly focused and to be honest, closer to my center is not a terrible place  to be.

In 2018, I will listen to more music, laugh with more friends (either physically or virtually), try harder to be nicer to myself, stress less about how hard it is and how funny it looks when I walk around…I will allow myself to just be instead of wishing for how I used to be. I will eat more ice cream. (I figured I should give myself one easy resolution just to be safe.)

I will be where the good goes, for me, on good days and bad days.

I wish all good things for you, too, dear readers. My wish for you on this new year’s eve is that you find your good, wrap your arms around it and never let it go.

A very bright and dark Christmas

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

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

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

Yeah. Or not?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I got a new foot for Stanley

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

Stanley is my cane. I dubbed him Stan upon looking upon him for the first time. I use his more formal name when I’m displeased with him. You see, I never use Stanley because he’s kind of frail and not very reliable. But when it arrived, this new more stable foot for Stanley, it changed all that. The new foot for Stan is so much better than the little one I used to have. It feels more stable and more like I will be less likely to kill myself using Stan, so I may use him more. I may actually stop stumbling around without support when there’s no handy friend, family, wall or grocery cart to hang on to. It also makes Stan able to stand on his own without me holding on to him (independence is important to me in a man). It’s a good thing in all ways. Well. In most ways, really.

Such a good thing got me to thinking. As you know, that’s never a good sign. According to my Precious Cheryl, therapist to the stars, I think way too much. Certain old ex-boyfriends might agree. When I get to thinking, there’s not a force in the universe that can get me to stop.

Let’s use an enormous hyperbolic cliche of a sentence starter, here, to describe what my new cane foot got me to thinking about: My descent into a brand new, much smaller life continues. With no end in sight.

I’m not sure how I feel about that. Sometimes I feel completely OK with it. Sometimes I look around my new smallish life and I think, “Well, the truth is, this isn’t half bad at all. I have a nice place to live, I have snuggly cats that I love, family & friends that are crazy awesome and more than enough of most things I need.” None of that can be categorized as anything near bad.

Other days, I look around my new smallish life and I think, “What the mother fuck has happened to me? How can I find any joy in this existence? How can I accept the fact that there is more that I can’t do than I can on most days? How can I become OK with the fact that there are more days than not that I am un-showered, wearing comfy clothes (again) and not a stitch of make up and I truly don’t give a fuck? How can I live a life that is so very antisocial? I will miss people. I will miss laughing and drinking and dressing up to go out. I will miss it all.”

It’s all very dramatic and complicated and lets just face it, not terribly healthy. For once, I have experienced a turn in this life that I have literally no idea how to deal with. That’s also not entirely true since I felt much the same way the day I was told Chuck was taken to the hospital after collapsing at work. We all know what happened after that. I didn’t know what to do with myself after all of that insanity either and I behaved astonishingly badly but somehow life went on and so did I. This experience is so much the same and so much different. It has completely boggled my mind, plain and simple.

I had my two year MS-versary on December 1 and it came and went without much fanfare. I had to actually look back in my journal to see what day it was that my actual diagnosis came and there it was. December 1, 2015. I remember the holidays that year being in a Solumedrol-induced haze. My first time on the ‘roids. How grateful I was earlier that week to hang out, in a hospital, with one of my oldest friends from high school who came with me to the three-day outpatient infusions. I remember laughing, like not a single minute had gone by since last we laughed, when in reality it was more than 25 (closer to 30) years since we’d done so for three days in a row. I remember how she ran around the hospital looking for Lifesavers when the Solumedrol gave me that nasty metal taste in my mouth, also for the very first time. They were butterscotch Lifesavers and they were perfect.

On Christmas Eve a few weeks later, I wore green shoes with kitten heels (Fluevog of course) with a simple, swingy black dress (the harbinger of uniforms to come) and bare legs. It was unseasonably warm in 2015 in December and I remember being grateful that I didn’t have to navigate through snow. I remember putting on makeup before heading out with my giant bags full of gifts and thinking how everything felt the same but also completely different.

I can’t remember last year much at all. I guess I’ll need to go back to ye good old journal to see how I was feeling on Christmas 2016 but I don’t remember feeling very festive. Or maybe I did and I’m just projecting my 2017 melancholy on to that holiday memory.

Lately, I find myself uncomfortable around other people. I find myself wanting to be normal and not coming close. I find myself wanting to enjoy myself and laugh and be with friends and family – and at the same time, I find myself a fish out of water in nearly every one of those situations. Grasping for the strength or will or whatever it is that will make me feel anything like any of these people I used to know so well and at the same time trying not to let anyone see me grasping at anything at all.

In my old life, I could enjoy myself in pretty much any group of people. I loved being around people, being social, doing my social thing. Don’t get me wrong…there were just as many times that I felt outright antisocial back then, too, but I had the uncanny ability to fake it. These days, though, I don’t feel like I could even fake faking it right now. I’ve tried it a couple of times so far this season – like for my office holiday lunch and gift exchange – where I had such a terrible day physically speaking, the pain so intense, that I could barely focus on acting festive.

I felt like a bitter, sad, broken woman sitting in the corning flashing her best fake smile around a room of happy, healthy, festive people. That smile of mine probably looked more like a grimace and I knew it. I could feel it. I kept at the act for most of the party until I sneaked out when I reached the point where I couldn’t even sit without feeling pain. It made me feel like a failure as I stumbled to my car, just across the street to the hotel where I’d valet parked just a couple of hours earlier.

I read a lot this year. Thirty-three books so far. That’s one helluva lot of books. It will probably be 35 or 36 before the year is actually over. I read so much because it keeps my mind busy and away from thoughts about what’s to come. I also read so much because I just love reading. I resent this disease for intruding on my favorite things and somehow making them bad to me now. Things like staying home, being cozy, reading books and writing. I did all of those thing before my diagnosis and they felt good. Now they feel like giving up.

I’m going to tell myself what I usually do at this point in a time of so much discontent and that is simply this: it can’t last forever. It will get better. Things will even out or they won’t and my new cane foot that feels more stable will give me the ability to get out of my house (and my head) even on a bad day so I can accept whatever I need to accept and not give up. A stable cane foot can make all the difference, is what I’m telling myself today. It’s a little thing, but maybe it will help. Maybe something will help. Maybe something will change. Maybe I will change. But for the better, this time.

It’s all so cliche! Major life changes after a cataclysmic diagnosis (this felt at the time and continues to feel cataclysmic though it should probably not feel as such. I mean, there are lots worse things). Events such as this, though, typically create melancholy that runs its course at its own speed until it peters out into some kind of begrudging positive thinking that feels more like lying than anything else. But it’s better than feeling angry all of the time so one tends to give in.

I used to think about how lucky I am that this disease hit me after I had such an amazing time in my earlier life. How this disease hit me after I’d traveled, did impulsive things, lived for decades as an unfettered adult without a care in the world because I had no idea what was to come and I just wanted to enjoy it. That time I took a year off work and just…painted. And sewed and wrote in my journal. Those trips I took with my friends to tropical places. Those trips alone to various other places. Paris and Florence and Denmark and London.

How lucky I am that I had so many drunken happy hours when I laughed with my friends until we peed. The wins (and losses) in my crazy career in advertising. The men, mostly boys, who I allowed into my life, sometimes only to break my heart, until I booted them out again when I started to yearn for solitude once again. Or they booted me out and I thought I’d die then I never did and things went back to normal again. I’ve lived. I’ve lived a lot.

I’m not sure I know how to live now. No! This is not me saying I don’t want to live (I promise you), it’s me saying I don’t know how to live.

I keep trying to figure out how and what will make this new life happy again. Simplify/get rid of unnecessary stuff (check). Change routines (check). Eliminate unnecessary obstacles, (mostly check). Get a uniform (done). Slow down (like I had a choice). Alter perspective (Um…working on it). Ask for help (check). Accept help (check). I’ve done all of the things! I’ve taken all of the advice. Even the advice I didn’t know to ask for.

We used to joke, my friends and I, when I would ghost every now and then and have a weekend or a day where I just caved up, did nothing, and luxuriated in my solitude. They would say, “You’re spending time with your favorite person, aren’t you?”

And I would chuckle. I sure was. And I didn’t even care who knew. It was occasional, after all, a much needed rest from trying to be the happiest, most free, most successful, most full-of-life person I knew. That shit was exhausting. Who wouldn’t need a break every now and then?

So now it’s a disease that’s making my life exhausting. I have no idea why the reason for the exhaustion has such an impact on how I think about how to deal with the exhaustion. I have no idea why it’s so hard for me to accept that this disease has given me the rare opportunity to live the life I thought I wanted to live – the life with unlimited time for my favorite person.

Maybe I haven’t figured out how to allow this new, broken somewhat less shiny person become my favorite again. I’m so busy picking her apart inside and out, I never get the chance to luxuriate. I never get the chance to just be…me. The only way to change any of this is for me to somehow fall in love with this new version of myself, the way I did such a long time ago after having my heart utterly annihilated by the latest guy to let me down. It took time then. And it’s taking it’s good old time now! I’m just as impatient with the process now as I was then.

Everything is the same. Everything is different. Time is the only answer. Fa-la-la-la-la and all of that rot.

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

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

Here’s the thing.

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

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

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

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

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

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

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

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

That’s where you guys come in, really.

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

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

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

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

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

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

Until it is.

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

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

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

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

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

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

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

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

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

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

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

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

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

I’ve got nothing

So let’s try this thankfulness thing…

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

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

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

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

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

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

Things I am thankful for…MS Edition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My expensive Internet slippers tried to kill me

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

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

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

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

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

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

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

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

I actually did this just a few short days ago.

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

The slippers of death.

But I digress. Back to the story at hand…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.”