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.”

Keep Passing the Open Windows

Finally a real top down day.

That’s the best advice I have, after beginning to come out of my very first significant relapse since my MS diagnosis nearly two years ago. Keep passing the open windows. I’ll explain more about that later, but first a few details.

I had two big meetings last week. One you already know about that I got through by the miracle of high dose prednisone. After 1000mg of Vitamin P, you can pretty much do anything.

But I had another big meeting looming the following Wednesday this time a lunch with the CEO of our largest client, someone I consider to be not only an amazing client but a good friend. I was beyond my steroids by almost a week. I know enough by now to know that Vitamin P high only lasts a few days for me, but I hoped with all of my heart the remnants would get me through this next hurdle on an unusually hot September afternoon. I mean really hot. Like 92 degrees record-breaking hot.

It made it. I had a lovely lunch meeting. My client did as I asked and allowed me to walk behind him and not in front as we left the restaurant just in case (I was definitely walking a bit wonky which still makes me feel self-conscious even after all of this time). I made it home, got into bed super early and told myself I would try to make an appearance in the actual office the next day. I was hoping that when I opened my eyes in the morning, the weird wobbliness would finally be gone, even though I wished the same wish every night since July 19 when this whole thing started and it hadn’t really happened yet.

The a-ha moment came as I lie in bed that early evening. I thought to myself, “That’s why this disease sucks so much.” I mean, there are a lot of ways in which having MS sucks but the biggest one is that it can (and does) change from day to day. You try to plan a week, but it’s futile. You think a particularly bad relapse is never going to end, especially when it’s your first. You truly believe with all of your heart that it will only get worse. You hit some pretty low lows. Your house, to which you’ve been confined for over two months now, starts to look shabby to you. You look around at your stuff, your precious comforts and you find them old, worn out and pathetic. You see cracks in walls you never noticed before. You wonder how long you’ll be able to live in this house with all of its stupid steps. You tell yourself it’s probably not very long.

Then you open your eyes some random day and boom. It happens.

You feel different. Not run-a-marathon different but can get out of bed and shower different. You manage to put on clothing and makeup and even actual jewelry. You leave the house feeling mortally afraid, but slightly hopeful that maybe you don’t have to be all that scared all of the time anymore. At least you don’t feel exhausted just by walking to the car. You get to the office and gingerly walk the short distance from the parking garage to the office only slightly terrified by the idea of crossing the street. You have a good day. You go home again and head to bed early (it’s now almost your regular bed time). You think about maybe doing it again the next day. Then you do.

The thing that keeps you off balance (pun intended) is that you never know, literally never will know, how long the good lasts before the bad knocks you on your ass again.

You realize that the days of making plans, any plans at all, are pretty much behind you. You realize that there might be really important things happening on one of those surprise bad days and you will be powerless to do a damn thing about that. You have to listen to your body. You can’t push forward when you haven’t the power to stand. You also realize that you can’t really plan little things either (like laundry, flower planting or social activities) because your ability has been changing hour by hour, sometimes minute by minute for months now.

When it’s over, it’s almost as jarring as it was when the whole relapse thing started!

You’re suspicious of how you feel. You feel good(ish) but are afraid to trust it. You want to feel optimistic and roll with it but what if it goes away before you actually make it to your office in one piece? You can’t trust your own body when it’s fundamentally not trustworthy, when crazy things like the damn weather can turn everything upside down in minutes.

Somehow, one decent day turns into three decent days and before you know it, the weather breaks and it’s almost a week. Is it really over?

Back to the explanation of my headline for this post. One of my favorite books by one of my favorite authors is The Hotel New Hampshire by John Irving. It’s a Dickens-like epic tale about the Berry family and their adventures (mostly maudlin, tragic misadventures) growing up in hotels, following their patriarch Win Berry who is the very embodiment of the word “dreamer.”

According to the New York Times review back in 1981, the major theme of Irving’s book was simple:

”The way the world worked – which was badly – was just a strong incentive to live purposefully, and to be determined about living well.” All the noisy slapstick, then, is Irving’s way of domesticating the malevolent vicissitudes of life.

The book can be read as a tragedy but it has an infectious hope throughout that refuses to let the maudlin, randomness of life ruin the Berry clan. Well. Not all of them anyway.

One of the kids, Lily, is small. She stops growing around 6 years old and never starts again. She is daunted by life as a person so small who feels things so very large. One of her brothers describes the sound of her crying to be the very sound of anguish, pain beyond pain, a gigantic wail that comes from the tiniest of bodies.

The children are told a story about a street clown named the King of Mice, who jumps out a window to his death one day after despair got the best of him. On a box containing his pets that was left behind are the words “Life is serious, but art is fun.”

Win Berry and his brood take the story to heart and remind each other to “keep passing the open windows” when they go through the sad, crazy, painful or unimaginable things that all families go through. They keep passing the open windows. It’s almost a family motto of sorts. Until one day many years later once Lily has grown to be a successful best-selling author, she finds herself in a terrible bout of writer’s block. She feels pressured to live up to her early success. In the end, Lily kills herself by (of course) jumping out a window. Her suicide note reads, “Sorry. Just not big enough.”

I don’t tell you this story to freak you out or to make you think that I’ve ever considered not passing my own open windows throughout life. The thought hadn’t occurred to me ever before. It hasn’t seriously occurred to me even now, but when you’re in the thick of a downward spiral that you’ve never experienced before that seems to have no bottom, you find yourself having some pretty scary thoughts. What if I can’t do this? That might be the scariest one of all.

I think the lesson of this relapse, now that I hope I can firmly say it is in my rear-view mirror, is that you can’t focus on the pain in any day or even any moment – you have to keep passing the open windows. A relapse hits and life is, indeed, suddenly very serious but you have to find the ability – be it from your faith, your loved ones, your optimism or your stubbornness we all have different ways – to know that it will end and you will feel better someday. Maybe not entirely better. Maybe some of the bad sticks around. But maybe it doesn’t too. You just have to have blind faith. There is literally no other option, lest you start to consider not passing the open windows and that’s just not an option for most of us. There has to be good to come. Even if you can’t see it, feel it or even imagine it.

The cool weather is making me very happy for other reasons too. I drive a convertible. Because of my extreme sensitivity to heat and humidity, I hardly ever drop the top in the summer time. Windows up, air conditioner blaring, that’s how I roll when it’s hot. Now that it’s deliciously cool (finally) I put the top down for my errands yesterday. First, I went to lunch with my mom. Took my nephew to Petco for some supplies for his kitties. And then I went to Target to get some essentials that I’d run out of during the long months of dizzy sickness when driving anywhere wasn’t even an option. It wasn’t until I crawled into bed last night that it hit me.

I did ALL of that in one day. For some of you, that probably doesn’t sound like all that much. To me it felt like a goddamn miracle. I know a lot of you understand that all too well. You’re the ones who I came to for encouragement, perspective, words of wisdom or just some much needed laughs. You’d been there before and you were wise to tell me that it wouldn’t always feel this way. I can’t lie. I didn’t really believe you at the time. I thought you were just being nice.

But I do believe now. We all have to keep passing the open windows. I’m going to remember this first relapse, probably first of many, as a concrete reminder that today is what we have. “Life is serious but art is fun!” Thanks to John Irving for helping me remember that.

My next Ocrevus infusion is on November 6. I’m desperately looking forward to it hoping that this is the one that I walk away from beginning to finally feel better for longer. If it’s not, there’s another one after that. And another one after that. And probably new and different drugs and new and different therapies…the point is, assuming that tomorrow will look a lot like today is never a good thing to think whether today was awesome or horrendous.

This relapse reminded me of that. And why I will continue to keep passing the open windows.