Random thoughts while waiting for my car to de-ice

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

You know my constant debate…

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

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

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

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

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

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

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

So I did just that.

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

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

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

Where was I?

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

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

Where was I?

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

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

Ever.

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

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

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

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

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

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

Kind of.

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

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

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

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

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

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

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

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

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

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

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

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

We always forget to say “for now.”

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

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

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

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

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

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

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

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

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

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

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

I have to tell you…not me.

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

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

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

Yet. It’s just not true YET.

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

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

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

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

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

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

Then the pain started.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You totally can!

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

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

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

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

Better was enough for me to dive into more research.

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

New year…new me?

My new/old obsessions.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I finally had a massage

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

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

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

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

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

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

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

So Michael told me what happened to Max.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s not.

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

The blog post that almost wasn’t

Not my real desk. Not my real writing. I actually journal with an app these days. I’m so tech savvy.

By now, if you’ve read anything of this blog you know that I am a daily writer. I’ve written in a journal for over 20 years. I have stacks and stacks of paper books full of my scribbles. These days I use an actual app and I journal on anything – my phone, my computer and my iPad. Along with my Precious (aka my therapist Cheryl), I don’t have much hope of remaining quasi-sane without daily journaling.

Writing is cathartic for me. It’s something I do because I need to do it – not because I want to. I can’t not do it. So imagine how happy it makes me when you guys tell me you like reading something I’ve written. It’s beyond anything I could have ever wished for.

I started putting my personal writings on this blog because I needed a community. I needed to find people like you all that I could learn from. Real people with real MS who were bound to be so much better at managing this disease than I am at present. I have great doctors, I really do, but it shocks me to this day how The Great Scott, while clearly one of the very best among MS specialists out there, still doesn’t quite get it. I know this every time he asks me, “When did you last walk a mile, Maribeth.” I resist throttling him mostly because I like him and I need his big brain.

Unless you have MS, you can’t possibly understand what it feels like to have it. You can empathize and listen and love and help. I’m grateful for all of those around me who do these things consistently every single day. But you also need a community. So I found one. Props to http://www.trippingonair.com/ for being my original inspiration to take my writing public. You should check her out. She wins awards and stuff and is one of my personal favorite MS bloggers out there.

All of that said, I still write in my journal things that I need to deal with in writing first and foremost for myself. Things that are private (believe it or not, I do keep some things private. Not much! But a small few topics). After infusion #2 of the new goo (Ocrevus for the newbies) I found myself struggling to write Musions on My Newest Infusion #2, which would have been the next logical blog post. I went to bed, tired to the bone from the juice, but not able to sleep. So I did what I usually do when that happens. I wrote in my journal.

This morning, when I’d read over what I wrote to myself last night it made me realize that I needed to share it here with you all, as well. It was the best description I could give about how I felt about this infusion #2. So I’m repeating it here (verbatim, no editing so there’s probably a million writer mistakes included).  I should first apologize for this marathon long blog post. Folks that get through the whole thing might just be super human! People generally like short pithy posts, or tips or hacks or whatever. That’s not me. Oh well. Gotta be me.

So here it is:

It was infusion day today. Big number 2.

I haven’t blogged about it yet but wanted to talk about it here, with myself, because I’m already in bed too late for getting maximum rest before attempting to both shower AND get to the office tomorrow but my brain is in overdrive. (Probably that tiny pinch of steroids injected into my bloodstream today is making sleep elusive.)

It would be notable if I accomplished those amazing feats I mention above but I’d been hoping to get the same little boost I got from Ocrevus the last time (really the first time) and when I’m feeling unrealistically optimistic, I do stupid things. Things like emailing my entire staff and telling them I’m going to be focusing on getting into the office more after infusion day number 2 is in the bag. I may or may not have committed to being in the office tomorrow. The very first day after my big nearly 8 hour day at Allegheny General’s infusion center.

Not all that smart, am I? No you aren’t that smart, Beth.

I feel like I need to kick myself in the ass. Hit restart. I gave myself until this day, big infusion day number two, to stop believing this body simply can’t operate in the outside world as a regular, if slightly ability challenged, human. Today will be over in a few hours and I feel like I have to try harder to make it happen, to stop my brain from undermining every single little thing in my life.

The trick is, figuring out how to do that without trying so hard that I kick myself back into relapse again. Or fall (again). Or end up in the hospital (again). It’s really difficult to determine where that line is. My nose is still a bit purple! It’s literally as plain as the nose on my face, one might say, that pushing too far without realizing it can have dire consequences.

How far is too far? I honestly don’t know and that scares me. But there’s a feeling that comes over me. The feeling of a good day. I haven’t had one in quite a while but it hasn’t been so long that I’ve forgotten what it feels like.

It’s not specific to any symptom. It’s not just how I feel when my feet hit the floor in the morning and I walk a little easier. It’s not a sudden burst of energy. It’s not a lightening bolt when you look back on the day and realize you weren’t popping Advil like Skittles. It’s more like a slow realization that the pain suddenly is not quite as painful. It’s a feeling of lightness. A feeling of safety. A feeling of peace. It never lasts very long, at least not lately. But it’s the good place.

Those are the days when my MS is quiet.

The thing I always fail to realize on a good day is that the constant noise in my head is somehow not there. It usually runs on a loop in my brain daily. “I can’t I can’t I can’t I can’t I can’t…what if? what if? what if? what if? always always always always always… it hurts it hurts it hurts it hurts it hurts I won’t I won’t I won’t I won’t I won’t…” Repeat. That voice allows MS to put a veil over life that makes everything slightly less vivid. Slightly less clear. Slightly less appealing. Slightly less possible.

I don’t know how to stop that voice. I’m probably stupid to give myself some kind of clear line in my own personal sand to test myself. To force myself into action. To present myself with an actual date.

Take a shower. Leave the house. ON THE SAME DAY. Believe it works and it will work. Allow yourself not to be scared.

It all sounds so inspirational and like so much bullshit. It could actually BE too hard. I might get out of the shower tomorrow and feel like my limbs are suddenly made of over cooked pasta. I might fall down when my feet hit the floor when I get out of bed. The world around me could suddenly be spinning like a crazed whirly bird. I might throw up again. I might have something entirely brand fucking new like not being able to see right or one or the other side of my entire body suddenly going completely numb.

Any of that could happen. That’s what this crazy ass messed up disease actually does to our bodies. And it’s entirely unique and different for each of us. We can relate to each other (us who are in this strange club called multiple sclerosis most of whom are my digital friends, but not all). It helps to know that someone else had a similar thing happen to them that one time…but that only goes so far. Your MS is your MS and until you look it in the face and make some kind of friends with it, every day will be a complete and utter surprise. I literally have no idea from minute to minute, second to second, moment to moment what my central nervous system has cooked up for me with her girl Friday (my immune system). I have to just accept it. I am almost two years into this mess and I’m shocked that I still haven’t accepted it.

Listen. Here’s the bottom line. Every day is a complete and utter surprise even for people that don’t have MS. My unpredictability is almost better than theirs, all of those normals I mean, because mine has a name.

Theirs is just called “life” and holy shit that’s the scariest disease of all because it also changes moment by moment. I used to be one of them (a normal) and i know how I felt. I thought I knew how my life would change for a million different reasons…I had a plan. I was reasonably smart and I worked so very hard and made such important plans. I would tell myself that by being a good, kind, loving human being I would have my happy little place in the world. Things would go my way. They had, for the most part, so it was an easy myth to believe…But I didn’t know. None of us has the first fucking clue what’s going to happen on any day of the week. We just think we do. I know!

Maybe when I look my named disease in the face and accept all of that chaos I will begin to accept that disease isn’t always ugly. It has facets and eccentricities just like we all do. I think I know what it’s going to do. It’s going to destroy me. It simply has to. That’s why it exists! But maybe there’s more to it than that. Maybe disease can be a teacher. Maybe I can learn how to stop thinking the teacher is a mindless dolt, and start listening to her.

Or maybe I can’t. I honestly don’t know at this point in my own personal evolution. I have no idea what’s going to happen next. And neither does anyone else. This might sound crazy but that’s the part that makes me feel better. That I know that fact to be gospel-according-to-beth-truth. We never know. We never have known. It’s always been a complete crap shoot. And it still is.

Will I shower and go to work in the office tomorrow to triumph over the gauntlet I threw down for myself?

The truth is, I don’t know. I know I will try that’s all I know for certain.

Post Script:

My original plan was overly ambitious, after all. My day started today with phone calls at 7:30AM and then call after call after call until it was 3PM and I still hadn’t showered or brushed my teeth. I did make some important things happen with all of those calls so it didn’t feel like a failure to me. I just had to suck it up an accept that I was being overly ambitious.

It’s a good thing too. Because I did finally shower around 3:30 PM and that shower kicked my MS-having ass. I never would have been able to get done what I got done today had I attempted to go into the office after an early shower, as I so foolishly planned for the day after a rough infusion experience.

I know it will take some time before the new goo makes it’s magic. I’m there in my head now. But now that I’m finally physically clean? I’m going to the office tomorrow. Baby steps are still steps in the right direction. I’m giving myself a much needed pass on not holding to my commitment to be there today. In the end, I’m trying. I’m trying so very hard! That has to be enough.

Twas the night before infusion #2

Tomorrow, merely one sleep away, is my second full dose of the new goo (Ocrevus for new readers).

I feel like a kid before the first day of school. My lunch is packed. I have an extra water bottle ready. Speaking of water, I’ve been chugging it all day in order to have plump and juicy veins with which to infuse that magical elixir…I’ve laid out my clothes. I’ll be in bed before 9:15PM since I have to be at the hospital by 7:45AM.

It will never stop being a mystery to me why they tend to schedule appointments for people who have MS so early in the morning. They KNOW how mornings work when you have MS (i.e. they do not work at all) and yet, here I am. Stressed out about the mere idea of a 6AM wake up call. But I’ll be there with bells on at 7:45 AM sharp because I’m more than ready to feel even a bit better.

I think my hopes are irrationally high.

We all know that it was only a month or so after my first Ocrevus infusion when all hell broke loose. The Great Scott has done what he could do to assuage my fears that maybe the new goo wasn’t the right goo for me…he insists on clinging to the notion of “just bad timing, Maribeth” and I’m kind of clinging right along side of him. We’re buds that way now.

I just want to be able to do more things. I just want to feel better so that I can stop spending so much time at home. So I can be interested in other things. Life things. People things. Thing that exist outside the realm of my home address. I want to feel happy again and not afraid of falling every minute of every day. I want the pain to stop haunting me every single freaking day. I want to go back to normal bad (which was actually good) instead of relapse bad (which wasn’t any good at all).

I want to shower more than once a week.

All of these things seem so greedy to me now. Now that I’ve gotten my first glimpse of that relapse life, I’ve finally remembered to be grateful for the regular bad (good) my life used to be. I’ll even take the 5 minute Solumedrol energy bump I’ll get with my Ocrevus tomorrow. I won’t even care if I turn into the woman on the moon again around the facial area! I just want to feel a teeny, tiny, smidgen of better. Even for a little while.

So I’m putting it out there in the universe properly this time.

I will feel better. Things won’t be so terrible anymore. The new goo is wonderful and the bad timing is a thing of the past. Tomorrow, my timing will be perfect. Right time. Right drug. Right as rain.

Gotta go drink two more liters of water before bedtime. Don’t want to have dried up invisible veins for my big day. I’ll have the best veins ever.

Are you listening, Universe? I said I’LL HAVE THE BEST VEINS EVER. This is gonna work. Got that?

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.”