The new Mr. Costanza

This isn’t a picture of Mr. Costanza. But I imagine where ever he is now, he is doing something like this.

Mr. Constanza lived on my street since the day I moved in, about three houses up on the same side of the street.

He and his wife, Mrs. Constanza, were pretty much a fixture on Virginia Avenue, him because he was always out walking around. Up and down the street, in his rumpled beige zip up jacket in the spring and fall, heavier black jacket and plaid scarf in the winter months, head down, walking so slowly it almost looked like he wasn’t even moving at all. But there he was. In the morning when I left the house for work, he’d already be on his way down Virginia Avenue in his super-slow mode, looking like he had everywhere and nowhere to be at the very same time. In the evening when I got home, he’d be coming back up the street toward his house, with Mrs. Constanza sitting on the porch, smiling, her crinkly face sitting atop her perennial black cardigan, over the faded print house dress, the uniform of old Italian ladies the world over. I had no idea how long he’d been out. If he actually went anywhere. If he came home to rest or if he was literally out walking around all day long.

Mr. Costanza used to mutter hello, ask me how I was doing, mention the weather or the latest happening on the street in his broken English, always with a half smile on his face (not a full smile) like he was grateful to you for putting up with his ineffective American talk, after so many years in this country. Mr. Costanza made his own wine, like lots of old Italian guys do, in his garage behind his house. He told me about it one day on his daily constitutional, and told me, “My wine. Is good to drink. You try it sometime when it’s ready. I come get you.” And off he’d go in super slow mo, back down the street like it was his job to be on patrol and he wasn’t the kind of guy who shirks his responsibilities.

One year, it might have been the time of the neighborhood Memorial Day parade when the streets were filled with families setting up lawn chairs on our sidewalks to watch the parade go by on our perfectly situated street and my neighbors across the street at that time, Jon and Rochelle, were over at my house chatting it up with me while we all waited for the parade. It was kind of a neighborhood tradition on parade day.

Mr. Costanza didn’t let the parade stop his daily patrol. But on that one day he stopped to chat with Jon, Rochelle and me, he invited us to his garage to try the wine because it was finally ready! “You come taste.” So, we followed him back to his garage where he had quite the set up of barrels and tubes and such, and he poured us each a glass in a small juice glass, as old Italians tend to do when serving their homemade hooch from the garage winery. We all said, “Salud!” and downed our dark purple liquid. We felt like we’d been given some amazing honor that day, actually trying the wine on that Memorial Day parade day, Mrs. Costanza sat on the porch and smiled and nodded at us as we walked by. “She don’t talk too good,” he explained. But we already knew that.

Until the day he died, I saw Mr. Costanza on his daily constitutionals and I always wondered how he never got bored or tired or just over the whole thing. The same neighborhood. The same houses. The same trees and alley cats and kids on bikes everywhere. I never asked him because that just seemed like a silly thing to ask a guy like Mr. Costanza. In my head, the imagined response he would give me would be something like, “Eh, because what else would I do? Sit around? I like the walk.” Or something simple and obvious like that. After he was gone, I missed seeing him on his daily journey. I also eventually missed seeing his smiling wife in her old-Italian-widow-before-her-time uniform once she also went to be with her ever-walking partner in life for all of eternity.

The Costanzas came to mind for me today because I did something I almost never do. Actually, I did a few things I usually never do and the first of them was to make a New Year’s resolution. I know. Resolutions are doomed to fail. I get it. That’s why I never make them and why I think they are generally overrated and self-defeating and all things hopeless and rather silly.

But here I am. A year after my diagnosis, feeling like life is changing faster than I can keep up with it, while all at the same time slowing down to a screeching grinding halt, with me sitting here looking at it all wondering how that is even possible to have those things happen simultaneously. I feel like what I’m doing, how I’m dealing or managing or whatever you want to call it (or generally waiting for something to feel normal or better or OK), is obviously not working. Something has to give. I’m getting to a point where I feel sad and hopeless more of the time than not and if you know me at all, you know that I have an almost physical repulsion for those feelings when they go on for too long. Enough is enough.

My resolution is so small and simple that it’s almost embarrassing to write it down or make some declaration about it, but today I decided that I need to make small changes to help myself feel better, even if it’s only a tiny bit better, even if it doesn’t really change much at all but my brain and how it works.

I decided that I will go outside every single day and walk for at least ten minutes. I won’t force myself to go far. I won’t force myself to go fast (as if those things are even an option!) but I will go slow, and walk funny and probably not get very far at all, but I will go. I will walk for at least ten minutes every single day.

Pathetic, I know. But you have no idea how enormous this is to me. Just stepping outside of my door and not walking directly to my car feels odd to me. It was cold today and windy and I probably should have worn a hat. But I did my little walk. And then I came home, had my breakfast (yes, it was 2:30PM, but whatever). I felt…better.

I’m picking up Mr. Costanza’s mantle and I’m going to be that lady. You know the one. She’s usually by herself. She walks funny. She barely makes it to Freeport Road before she simply turns around and heads back the way she came. She is always dressed in black (right down to her sneakers). She has that insane hair that always looks like she’s just been scared to death by something or like she just rolled out of bed (both could be true lately). She walks funny without anywhere to go and doesn’t get very far. But she walks.

Maybe she will start making her own wine in her garage some day, too.

To wait for help or not wait for help

Spoons are precious.

That is the question.

I don’t like that I’ve become a person who requires so much help. I struggle with it, the idea that I am no longer the independent do-it-yourself kind of woman I kind of liked being for so much of my life. It always amazes me how many basic daily tasks are impacted by a lack of energy, balance, strength or coordination.

I struggle sometimes over which things are “worth” my spoons, and which are not. (For more info on this whole Spoon thing, go here: http://bethybrightanddark.com/2016/10/28/today-i-learned-about-spoons/)

I have this idea in my head that my energy, my spoons, should be wisely spent and not squandered doing dumb stuff. So if I need to carry a bunch of heavy stuff or do a bunch of banal chores, I tend to batch those things until I know I’m going to have some help around (thanks to my family, usually my nephew, who helps me out on the regular). This spoon conservation method seems like a wise choice, for the most part, but it has it’s downsides. Most of them are mental.

Asking for help, being helped, waiting for help – all of these things change the way you see yourself. They make you feel less than whole, unable, needy. I suppose there is a school of thought that if you are indeed those things (sometimes, I am all three), fighting that reality is a foolish quest. Accepting that you need help is part of being “disabled” and a harsh reality of having a degenerative disease. On the other hand, reminding yourself that you’re still you, the you you were before being slapped with the label “multiple sclerosis,” is pretty important, too.

It’s little things, mental things, things you think don’t matter that matter a lot, that can make the difference in a bright day or a dark day. Sometimes when you let yourself recover a bit by sleeping in until 1PM on a day off, you want to get out and do something normal that makes you feel normal. Just like other people who are…well, normal. (As if anyone actually feels normal! But that’s another post entirely.)

I got up. I threw on my weekend uniform. I gathered my things and ran some errands. Nothing huge. I had to ship something back from the holidays that needed to be returned. I had to get cat food. I was also hungry. So I needed some food.

After treating myself to lunch at Five Guys, I headed to Petco to get the cat food. I knew I could also use litter because, well, four cats pretty much means you always could use more litter. I hesitated…I had this giant bag of cat food. I had the paw friendly ice melter junk (it’s supposed to get snowy here tonight). Could I manage litter on top of all of that? Should I wait for help?

I decided I would get the litter, too. Hell. I was in the store! It seemed silly not to. I told myself I could leave it in the trunk and wait for help to get it into the house, later. There would inevitably be a visit or an opportunity to get my nephew over here this weekend when he could carry the heavy junk for me. I got three boxes of litter, loaded the entire mess into my trunk, walked a little extra back and forth to return my cart and get back to my non-handicapped parking spot. Then I drove myself home.

Sitting in my driveway, thinking about the stuff in my trunk, I was feeling like I needed to try unloading it myself. I needed a mental boost. I needed a bright day after a few that felt decidedly kind of dark-ish.

I took my time. Unloaded the cat food and the ice melt first, and left those on the porch. Then I got the litter – carried two boxes to the side door, went back to the car and got the last one too, and then went inside the house to drag them down the stairs to my basement – which I did, one-by-one, until the task was done.

I filled two giant contractor trash bags full of empty litter boxes and carried those outside to the trash. Then I went back outside to get the big bag of cat food still sitting on my porch.

I realize how boring this sounds. I realize that this isn’t such an interesting post and I’m not even sure why I felt the need to write about it at all. But the truth is, I needed that mental boost. I needed to do it myself.

I had to sit and rest when I was done. I chatted with my mom on the phone a bit. I fixed a chipped nail that had suffered damage from the chores (because it figures!). I took a handful of Ibuprofen. By that time, it was acceptable to me, in my head, to admit that I needed some spoon recovery time and I plan to lay low tonight, maybe snuggle up with my latest book (it’s a new-ish one from John Irving, my favorite all time author, and I am already engrossed).

For some reason, just doing that basic set of tasks, that to me felt anything but basic, gave me the mental boost I needed to allow myself the luxury of not feeling lame for having another rather low-key day. Kind of like changing that damn light bulb, yesterday. I need to push myself sometimes because not doing it kills my spirit more than doing it kills my body.

Oddly, it was my 76-year-old mother who taught me this lesson over this holiday break. We’ve been spending a bit more time together than usual because of the holidays and I’ve been watching her keep going, even when she’s in pain and struggling, because she knows that stopping would be worse. Watching her do things that are simple for many, but hard for her, made me understand this finally.

I know I need to be careful and not push too much. I know I need to be extra focused and diligent to make sure I don’t actually hurt myself. And don’t get me wrong! I’m not over needing help. I will always need help and I know to ask for it no matter how much I hate to do it.

But I’m starting to realize that taking my time, making many trips, slowing down and carefully doing the thing I think I can’t do is something my broken brain really needs. That seems like a good thing to use some spoons on, even if it’s not all that much fun or exciting.

It helps me feel “normal.” That needs to be enough.

Having myself a merry little MS-mas

I’m not kidding. My family gets me. Obviously.

I have always loved the holidays. I know. It’s lame. I have a family that I mostly like. (I used to say “I have a perfect family” but I’m thinking as a grown ass person it’s OK to admit your family isn’t perfect but it’s also OK to say they are also pretty awesome considering.)

I don’t dread the holidays like a lot of people I know. I love them. I love buying gifts. I love spending time with with the fam and watching them open said gifts. I really love that I am that aunt who is the eternal “guest” who never has to work very hard but gets to show up, partake, enjoy and then head home with my bags of thoughtful presents that my family got for me.

I’m horribly spoiled. I know this. And for this I am eternally grateful.

But this holiday is forcing me to admit a few things. As I look back on how this year is different than last year, that activity I’ve spent almost every single day of this entire year indulging myself in, I can’t deny that things have kind of taken a bit of a nose dive in the past twelve months.

Last year at this time was the last time I felt “normal.” That’s because my body was pumped full of that magical substance called Solumedrol and I was still feeling like I was rolling on the ‘roids, full of energy, looking at the holidays like the joyful time of year they are for me and hoping that things were only going to get better from there.

But that’s not how MS works. Or, more specifically, that’s not how my MS seems to be working.

A couple of weeks after Christmas 2015 was when I realized that the effects of the Solumedrol weren’t lasting as long as the docs hoped they would. I remember sitting in Dr. Scott’s office for the very first time on December 29, 2015 and him telling me I’d probably be old and gray before I even needed a cane. I remember listening to him and thinking…Well, OK! This can’t be that bad! It’s going to be OK. Remission is coming and then I just have to figure out how to deal with relapses and I can do that.

But remission isn’t all it’s cracked up to be, or at least it’s not for me. In the course of this year I’ve gotten weaker and weaker. I can still walk, most of the time, but I can’t walk very far without taking a rest (I’d guess just about that 100 meters that haunted me recently, thanks to Google). The problem is the lack of energy more than the lack of ability though my ability sometimes goes wonky too. I thought Provigil helped, but it really only helps me get about 4-5 hours in a day where I feel moderately alive. Moderately. I mean, I feel just OK in those 4-5 hours. The rest of the hours, I just want to stop. Sit. Sleep? Or maybe just do nothing.

The holidays have me feeling a certain kind of way because it’s giving me a year of data to analyze and the top-line results on my qualitative report aren’t super positive. Tysabri hasn’t been the miracle drug I wanted it to be. I’m not sure I can do without it, (based on that one month that I skipped my infusion and I could barely walk), but it’s only keeping me from getting worse. Or more accurately it’s preventing me from getting a lot worse. Because I’m definitely not better. I have fewer and fewer days that I can classify as “good” based on what my old definition of good once was. In the last year, I’ve had to develop a new way to classify what I consider “good” and I can’t say I’m thrilled about the new scale.

This holiday was low key in a really good way. The kids are all old enough now that there’s no fighting, no stress, lots of laughing. They were a delight, to be honest. The food? As usual, my family outdid themselves and everything was delectable. Yummy. Indulgent. I was home in bed by 10:30PM on Christmas Eve and I was pretty happy.

Christmas Day was harder. I didn’t sleep well that night before no matter how happy I felt when I laid my head on my pillow. I think I might have a UTI? Tysabri sometimes causes them, or so I’m told. I’m not sure, but I was up peeing just about every hour on the hour. When I had to leave my house to get to my sister’s for Christmas Day festivities, I was already dragging.

I told myself not to worry about it. I didn’t have to do anything more than get myself there, sit around, open some presents and eat a bunch of delicious stuff. The thing that is killing me to admit is that even that felt like too much for me. I got to my sister’s house around Noon. I put on my happy face and hung around all day. I did the things, ate the food and had the fun. Mostly I just sat around! I mean, how hard is that?

By 6PM I was hitting the wall. I was trying to just last long enough to eat Christmas dinner. But since we ate so much at brunch, nobody was ready for dinner by 6PM, but by 6PM, I was on my sixth hour being vertical and I was ready to eat and go to sleep. Dinner was just starting being made at 8PM – not starting to be eaten – and I literally hit the wall. I knew it would be (just) another hour or so until we ate and cleaned up and everyone went home but I didn’t have another hour in me. I didn’t have another ten minutes in me.

My entire body was throbbing. Pain seems to happen when I am overly tired or sometimes it comes on me more aggressively when I’m on Provigil (again, no idea why) but my entire body was aching. I was dreading getting home and doing the all the steps (the usual routine was ahead of me…litter boxes down the cellar, feed the cats in the kitchen, little boxes on the second floor, then bed) and I was not sure how the steps were going to be possible with how I was feeling.

I knew it would seem ridiculous for me to actually leave half an hour before dinner was served. I didn’t really want to leave because I was actually starving and I really love Christmas dinner but I also knew I was breaking down. I get really crabby when that happens and I knew I should just go home and stop trying to pretend I was OK when I wasn’t.  I wasn’t pretending very well by that time anyway.

The broccoli casserole was just being mixed up and put in the oven when I called it. I said my thank-yous and left. I got home and did my usual (slow down the stairs, one foot at a time, then crawl up the stairs, fall into bed because thank God on Christmas I pretty much stay in comfy clothes all day and there was no makeup removal involved).

Then I experienced that feeling. My most favorite feeling of all! That is the feeling when I am physically done, and my body is on fire with pain and my legs barely move like legs are supposed to move but my brain remembers that I took that drug around 11AM that morning and it’s not anywhere close to being ready for unconsciousness. So I lay in bed, awake. Feeling the pain, but happy to be there all the same.

Holidays are hard, even when they’re not hard, when your body isn’t playing nicely like it used to.

Sitting around, laughing and eating and socializing with people you love is tiring and I keep overestimating how much I can pretend before I hit the wall. Maybe it’s the pretending to be my old self that takes so much out of me? But even when I don’t, even when my bitchy self bursts out and gets super short and obviously irritated, that makes me feel badly, too, so that blows. Who wants to be the big grump on Christmas Day?

Again. I realize the obvious. I need to accept things have changed. I need to accept it and move on. The fear I have on this last week of 2016, the year of total suck, is what happens once I accept it? Then what? How do I live this new life and not resent it 100% of the time? How do I not lose my mind with frustration, loneliness and fear when I spend so much time alone doing nothing but reading and thinking and being quiet (because that’s what my new body can manage)?

What happens once you accept the quiet?

I honestly don’t know because clearly I haven’t accepted anything. I want to be better at this. I want to be the person who sees the silver lining and accepts the hand she’s been dealt gracefully and with a happy little laugh and accepts that all of our lives are changing every minute of every day. That makes my life not very much different than yours. Or yours. Or yours. It might actually look a lot better than yours, on some days. It might be easier than yours, on my worst day. I want to be more grateful for that fact and I want to focus on the positive.

I am alive. I am surrounded by people who love me. Things could be a lot worse. There are worse things than being the grump on Christmas.

I’m going to work harder on remembering that.

You know you have MS when…

I may or may not have gone overboard this Christmas (as usual).

I’m enjoying the crap out of my holiday time off, guys. I mean, not one damn thing has changed. I’m still wondering if Provigil is actually working. I still can’t walk far enough without resting. And my legs still often feel like they’re made of stone. All of it. Not a single thing has changed or gotten one bit better.

But not having to deal with work stress while experiencing all of the above is truly a gift. I always scoff when I read articles that emphasize how stress exacerbates MS symptoms. I mean, who isn’t stressed 24/7? How can you even tell if stress makes things worse?

Here’s how. You take a little time off, slow down, give yourself little room to breathe and leave your days relatively schedule free. And viola! Your broken brain is all of the sudden much better at dealing. Go figure. I haven’t cried in days.

I know, right?

I struggle with the notion that I am so limited physically. I hate asking for help and lately it seems like all I do. So when I have a task that requires doing that can be modified, adjusted or altered to allow me to do it all by myself, I am thrilled like a little girl on Christmas morning who’s been very, very good this year.

Today, I was facing a mountain of presents that required wrapping. As usual, my online shopping led to a situation where I bought a few too many things for my loved ones. I mean, they deserve it. I love giving gifts to people! It’s one of my most favorite things. Finding just the right thing for someone who will love it especially much. There is truly nothing better, in my book. But I overdid it. No doubt about it. The task was daunting. Here is what things looked like before:

No peeking, friends and family. I hate ruined surprises.

But it’s done! I did it. It required some modifications like learning how to wrap large items while sitting, paying extra special attention to what is actually in what I was wrapping so the right people get the right presents (thanks brain fog) and taking a few ibuprofen halfway through because my entire body was on fire. But it’s done! I am victorious.

So you know you have MS when wrapping bunch of presents feels like winning the goddamn NY marathon and leaves your body feeling much the same way (or so I would imagine having never run more than 3 miles at one time ever before in my life). But I imagine one’s body hurts after one completes a marathon? I mean, it must. And so does my body after wrapping all of those presents.

Holy crap. My shoulders are on fire. My legs are shaking. My lower back is aching and my vision is a tad bit blurry. I did the crawl up the steps to pee thing, that I love so much, once the job was complete but you know what? Who cares. Sometimes when I’m worn out I have to crawl up the steps. That’s just the way my life is now. It might hurt, but it also feels good, to know I did this task myself.

Maybe it’s a Christmas miracle or the wonders of what life is like when you have MS and you’re not trying with all of your heart to keep up with your old life…but whatever it is, I’m taking it. I’m really proud of those wrapped presents. That’s when you know you have MS.

One more thing should be noted. I usually keep my wrapped gifts up high to prevent my four cats with four sets of very sharp claws from undoing all of my efforts before Christmas morn. But as I mentioned, I went somewhat overboard and I didn’t have enough room for stacking up high. There is one rather large stack within reach of those nefarious creatures that has me kind of worried.

If there is a feline unwrapping party at my house tonight after I fall blissfully to sleep, my family will be getting some naked gifts cause that wrapping thing can’t happen two days in a row.

You know you have MS when you totally don’t care if you end up giving naked gifts. I did it. And I have proof.

Is drunk therapy a thing?

Bitmoji me’s hair looks freakishly like my real hair

Today is a most special day.

It’s my first ever double-long therapy session with my precious (aka Cheryl). I asked her at my last session if we could plan a longer session because I have so much more to talk about now and I always feel like I’m just getting to the good stuff when the clock strikes 4:10PM and I turn into a pumpkin and she pushes me out the door to the open angry glares of the man who’s after me every Tuesday, who’s sitting in the waiting room wondering if I’m ever going to stop talking.

And as per expectation, today is double-long session day and I’m over here feeling pretty good. I have actual clothes on that aren’t stretchy. I mean, I’m wearing jeans for the first time in months, people. I did a good job with my makeup today too. I’m not wearing sneakers (thanks Fly London). I remembered to put on jewelry. I both showered yesterday AND got my nails did. I could pass for old me. Almost.

I even ate eggs in a bowl before leaving the house. I’m kind of on my game, you might say.

I’m considering stopping at the liquor store on my way there and just asking Cheryl if she wants to share a bottle of champagne instead of talking about my life that’s gone to shit.

I’m really missing champagne.

Changing your mind is hard

I think I wrote on this very blog not that very long ago about my need to change my thinking. I was having one of those rare quasi-positive days when I like to tell myself that my mind is in control and this body only needs to finally get on the bus so we can all roll down the road to Wellville and be ourselves again.

The thing is, it’s not all that easy. I can see Cheryl in my mind’s eye right now shaking her head very slowly and chuckling at me because she’s only been trying to teach me how to change my thinking for over a decade and I resist this lesson most passionately. I hold on to my broken thinking like I’m in the middle of the North Sea and my broken thinking is my only life raft. If I let go, I will drown a cold icy death. So I cling to it with all of my might.

The trick of this disease is that you cannot think your way out of it. And I would know, because it’s officially been a year now since my diagnosis and I’ve spent every conscious second of these last 365 days trying to think my way out of this. Around this time last year, I was feeling human for what felt like the very last time as I was shot full of magical (but dangerous) steroids that made me feel like super woman for a few weeks. God I really loved those few weeks!

In the course of the year since then, things have changed a lot more than I’d like to admit. I am slower for sure. I am far less social. I barely leave the house these days except for the occasional work day (and I do that only to keep myself from losing my mind because I can actually get more done working at home).

My outfits have changed drastically along with the shift to sensible shoes. My days of wearing very intricate, carefully applied makeup have gotten fewer and fewer not just because the cats don’t really appreciate a well executed cat eye or because it’s no fun putting makeup on a face covered in middle-aged acne. It’s mostly because who has the energy to take it off again before falling into bed at night? Or early evening? As the case may be.

A few appointments ago when I went in for hair day, my most favorite day of the month, I said to Dana my hairdresser, “I need handicapped hair. Hair that doesn’t need to be messed with. I want hair that doesn’t give a fuck.” So we did that and because she’s that good, it doesn’t really look like handicapped hair, but I know what it is deep down inside. I also told Dana that day and I think I meant it…I’d shave my entire head if I thought I could get away with it. I’m just over all of it.

I find myself looking in the mirror and not recognizing myself. I look tired. And old – like someone who’s just given up a tiny little bit.

I’m not embracing this new me, I’m hating on her with all I’ve got. I wish her to go away. I want old me back. The one who cared more, liked more, felt better and was up for a good time. I want to want to be her again. I want to have the energy to be her again. The trouble is, I just don’t have her in me anymore. I feel like she’s left on a long sabbatical and all that remains is this new version of me that I’ve definitely not welcomed with open arms. She feels like an unwelcome house guest who arrived for the holidays last year and just won’t leave already.

I’ve been focusing my changed thinking on pretending I don’t feel the effects of this disease. I’ve been telling myself that if I only think positively, and not focus on the obvious, I won’t need to sleep for three days after one night out. I won’t need to rest after running two short Sunday afternoon errands like I did today. I won’t look so tired if I don’t let myself accept that I really am that tired. I’ve been trying to pretend and at the same time beating myself up for failing because the thing is, no matter how positively I think, my goddamn legs are not playing along. And there you have it. There, my friends, is the rub.

Maybe I’m changing the wrong thinking. Maybe the thinking I need to change isn’t about my physical limitations because that shit is just real. Maybe it will get better someday. Maybe there will be a miracle. Maybe this next new drug will be the one that has me dancing and running up steps again (ok…I never ran up steps but I could try in my delusional brain when I think about miracles). But I don’t think I can count on that. It just doesn’t feel all that realistic. It feels like empty hope.

I think I need to figure out how to embrace the new me. Welcome her in. Give her a comfy place to lay her head, maybe some really nice expensive sheets to cozy up in. I need to stop beating her up for spending so much time at home and start teaching her to be more grateful that she has this wonderful home at all. I have to teach her that the face she sees isn’t just old and haggard. It’s been through it’s share and it’s showing it’s wear but it’s survived it all and it will likely survive more because I’ve come to the conclusion that is what life is all about.

I need to figure out how to let the quiet be OK. I did that once before but I’m resisting it hard right now, filling it up with social media and computer games and television all of which is often just plain noise. Maybe I’m resisting it so hard now because it feels like giving up?  It could be because this time, the need for acceptance comes when I’m almost 50, not just-turned-30, and my whole life is no longer in front of me. That’s just a fact.

I want to stop being sad about new me and start liking her. I just don’t know how. I guess that’s why I have Cheryl. She really has her work cut out for her. I need to change my thinking but not about accepting that I have this goddamn cursed disease. It’s here! It’s not going away. Nor, it would appear, am I because no matter how few actual humans see me in the wild I still continue to exist somehow. I need to start figuring out what’s next.

I won’t miss 2016.

I know a lot of us won’t for a lot of really good reasons but I really won’t be sad to see this year pass. This year has chewed me up and spat me out and left me feeling utterly confused and rattled. As it winds to a rather quiet end I am going to try and focus on changing my thinking about the right things this time. I’m going to try and give New Me some space. I’m going to try and teach her to love the slowness, and the quiet and her newfound wrinkles.

She has certainly earned that much.

 

When did I become such a creature of habit?

Off schedule infusion day throws me.

The routine is different. I didn’t get my post-infusion egg souffle from Panera and that just feels wrong. I can’t take my customary post-infusion five hour nap because of several conference calls I scheduled when I THOUGHT infusion day was yesterday, so that sucks since I am struggling currently to stay vertical and conscious. This legal call to discuss client contracts at 3PM is gonna be SUPER fun as a result.

Also, post-infusion provolone sticks were an ingenious idea on my part but the sub-zero temps in Pittsburgh today mean they were no longer hot and gooey when they arrived, so cheese stick FAIL.

There was a new room of “sweet pumpkins” in the Wednesday group, some of them also newly diagnosed. Turns out none of us feels like we’re really getting what we need from our neurologist but since our neurologist is “the best” and all, we all feel the need to stay the course. When looking this disease in the face, none of us are willing to leave “the best” and risk missing out on some cutting edge new treatment that might be coming along. So we all wonder what our options really are, when you come right down to it. And we stay put.

There is an air of concurrent desperation and resignation in the infusion room that is hard to rationalize. Feeling both of those things at the same time is rather unsettling. For all of us.

Today I got a great recommendation from a fellow infusee about a new primary care doctor, so that was a great outcome. She said this doctor listens and cares and helps difficult things (like many diseases) make sense. The woman who gave me the recommendation doesn’t have MS. She has some kind of blood disease that causes neurological impairment, I didn’t catch the name of it. Her infusions are of something different than mine. I got the impression it was pretty hardcore because she wasn’t alone in the infusion room. She had a caretaker.

Sometimes my mind gets overwhelmed by all of the things people have to deal with in this life. Sometimes it quite literally blows my mind.

I’m technically off work now for the rest of the year. I’m sure it won’t be completely quiet but, for the most part, I am free. Maybe it will be a good experiment to see what life is like when work isn’t breathing down my neck or invading my thoughts every minute of every day.

I mean, that probably won’t actually stop so it’s a flawed experiment from the start. But it’s nice to dream.

The funny thing about loneliness

Lonely cat isn’t lonely because he’s alone

I love being alone.

This seems very odd to many people, but I’ve established a sense of comfort in the solitude that I’ve been given. I treasure it. I hardly ever wish for another human to be here, in my home, entertaining me. I cannot remember the last time I had a thought like, “Gee, wouldn’t it be nice if someone else were here? Wouldn’t it be nice if there was someone to do things with?” The simple reason is that I prefer my own company under most circumstances. I find comfort in my solitude. It took me a long time to get to this point where I don’t jump out of my skin thinking about being alone. But I got here, and I am happy I did.

When I’m asked what I like to do, I usually start with how much I love to read, watch good television or movies, write in my journal. Even before I had trouble getting around and walking very far, I still had that same response. I have traveled all over the world for both work and pleasure but the truth is that I really prefer being home. I’ve never gone on a trip where I wasn’t ready to come home at least two days before my trip was over. I force myself to travel because I feel like I should see the world and explore and such. But the real truth is, I like the idea of seeing cool places more than I like the reality of what’s involved in doing it.

The simple truth is, I live a pretty internal life and for 49 years now that’s been enough for me. But lately? I can’t stop thinking about the word lonely. I feel lonely. And it has finally dawned on me that loneliness has nothing to do with a need to not be alone. They are two very different things! I mean, why didn’t someone tell me this before?

I’m most lonely when I’m in the company of others. I struggle with this because it seems like such an oxymoron, but I feel more lonely than I’ve ever felt before when I’m in a roomful of people. This is probably why I avoid parties now. Or socializing in larger groups. It’s not just the physical limitations, though those do certainly make partying a challenge. It’s not about my frustrations with my wardrobe limitations, though that also irritates me more than I like to admit. It’s much more about my inability to feel truly a part of any group no matter how big or small.

This disease makes me feel completely separate from most of the world. I find myself in the company of people I love without anything to say. I don’t have anything of interest to add to many conversations. When people talk about normal-people things – like things they want to do, places they want to go, events they want to attend or exhibitions they want to see – I find myself shrinking into myself thinking, “I probably couldn’t do that. I’d get too tired too fast. I wonder if I could walk that far? I wonder how long it would be until I just lose interest because I’m just so fucking tired?” These generally aren’t fun, upbeat thoughts to contribute to conversation.

Topics that are usually top of mind for me include things like how to describe my latest leg problem. Is it a pain? Or is it a vibration? Is it tingle? I might be thinking about how long it’s going to be until I need some kind of walking aid. Will a cane help? Probably not but what about some kind of walker? Well that won’t keep my legs from getting tired. How do you use a wheelchair when you CAN walk? What do you think?

You probably don’t. You probably don’t think about things like this at all nor do you want to think about things like this. You probably don’t want to hear about my latest bizarro symptom or the fact that I slept for 12 hours last night but I still feel like I could sleep for days and days. You might find it less than entertaining to hear about my greatest fears (not being able to work anymore) because who the hell wants to talk about things like that in polite company? You definitely don’t want to know how many times a day (and night) I pee.

I know I don’t.

I have friends. I guess I have a lot of friends. But I’ve fallen out of touch with some because I’m hardly ever feeling up to going out at night these days. I don’t make many plans. I realized last week when I was out to dinner with clients on Thursday night that I haven’t been out at night in the past 6 months more than a handful of times. My family makes fun of me for my tendency to want to have dinner super early. I’m the queen of the blue plate special. Not only does this allow me to avoid the “scene” wherever I happen to be, it also means I can probably get home before my whole body just gives out. Who wants to go out to dinner at 5PM? Not many people, it turns out. (Some of you do, though, and I love you for it. You know who you are.)

I see people I know doing things with each other that I think I would like to do…eating out, having drinks, going places in public, traveling to places I’ve always wanted to see. I feel sad when I see these things because I wonder if I don’t get asked anymore because people don’t want to make me feel bad or because maybe, just maybe, I’m kind of a downer to be around. Truth be told, I’d probably say no if I were asked. Why do I want to be asked to do things I probably can’t or won’t do?

I’m impossible to placate. I want to be included. But I don’t want to be included. I want to want to do things. I want to be normal. I want to feel like you feel and live like you live. I want to think about fun things and be a fun person. I’m funny! I want to be funny again.

I want to stop being pissed off all of the time. I want to stop envying your ability to walk so gracefully (even when you think you’re not graceful, you look like a goddamn ballerina to me). I envy your ability to make plans. I envy your optimism. I envy your ability to be interested in things. ANY things. Especially things that have absolutely nothing to do with my broken central nervous system.

What I don’t envy is the fact that you aren’t alone. If you aren’t alone, I mean. If you are alone and happy, I envy that most of all because that’s what I used to be.

My discovery about loneliness is this…it’s not about being alone. It’s about feeling separate. Not a part of anything. Not a part of normal life. Because your life isn’t normal anymore. I never felt lonely being alone before because I really wasn’t lonely. I felt like an important part of a very many things.

Now I don’t feel part of anything, really. I still feel a part of work. Maybe that’s why work has become so central to my idea of who I am.  I feel almost normal there. But I feel mostly normal there because I have things to say, issues to resolve, ideas to participate in. I can be useful. Until I have to travel anywhere!  But I can not think about that until it happens.

Being lonely is about feeling separated from the world by a thin translucent film. You can see what’s happening and hear the voices but you don’t feel a part of them anymore. You feel encapsulated in the shell of your circumstance, whatever your circumstance happens to be. Mine is MS. Yours might be chronic pain, or depression, or a million other things. It probably still feels the same.

I resent this disease for ruining so many things but mostly because it’s taken away my ability to be happy alone. It really ruins weekends since weekends seem to be when I have my most uplifting, happy thoughts.

That was a joke. At least I’m still funny.

People are really…nice sometimes

You already know this has been a tough week. I’ve been struggling openly with a myriad of annoying symptoms that are seriously getting me down. Mostly, my walking has been for shit and that just makes a lot of things (mainly everything) harder.

I had to be in the office today for visiting dignitaries. This took planning akin to what I assume must have gone down when taking down Osama bin Laden. Don’t get it twisted. I am wearing what could pass for black pajamas but my hair is mostly clean and I at least attempted to cover my old lady acne covered face with something resembling makeup. I did my best.

I was so excited when I was in the car with time to spare until I realized I had no gas in said car and I was already in town (where there are no gas stations, of course) and it was literally 5 minutes until my first meeting started with new clients…so I couldn’t go get gas. I was on fumes. I should have gotten gas yesterday but when your brain is preoccupied with things like WALKING you forget the little things in life. Like the fact that you are dangerously low on petrol.

I realize when I get to the office that there is practically nobody here. I mean, literally almost everyone is out at meetings or production or vacation or whatnot – but the bottom line is that none of the people who know me well enough to be asked to do something so insane as to go get gas for me while I’m on a two hour conference call were physically present.

The problem is, the visiting dignitary was arriving at 3PM. He had only a short time to chat with me before getting on a call at 4PM. And then we had to leave for dinner by 5:30PM because it takes me so freaking long to get anywhere when my legs are acting so crappy (as they are today, because of course they are) that I have to build in time for very, awkwardly slow-walking to and fro.

There is no time in there to drive to either of the Sides (North or South where I’m guessing the closest gas station is) and we all know I don’t move very fast so add time on either end for me to get TO my car and then back to the office FROM my car. There just wasn’t time for me to get there and back.

I could think of nothing but me driving around with our CEO in the car a little later and running out of gas and then not being able to walk anywhere because I have broken legs and OMG. WHY WHY WHY???

I work with angel-people.

They look like regular old people. But they are angels in disguise. I begged my favorite designer (don’t tell him he’s my favorite) to go get my car, go get gas and then return to the office. I tell him how embarrassed I am. I make sure he’s not too crazy busy to leave the office first (he probably lied to me about that). His only question was “It’s an automatic right?” I would have hugged him but that might be seen as moderately inappropriate so I just gushed about how he was literally saving my life, while my conference call is on mute (in a meeting where other angel-people attended in person, covering for me like pros, so I didn’t have to fly to Charlotte today for another meeting).

I stuffed a bunch of twenties in my favorite designer’s hands along with the car keys making it clear that he was to keep ALL change. This angel, in the form of a scruffy tattoo-covered imp, does ALL of this and then stuffs the change BACK in my hand, refusing to take it.

Sometimes when you are at the end of your rope, people are what save you. This sounds insanely dramatic – but I needed help today and someone helped me. I’m very lucky to work with so many talented and kind angel-people who do more for me than I deserve.

I’m very grateful.

Hi, Rock Bottom? I’ve been waiting to meet you

Cheryl agreed with me yesterday.

This is worse than when Chuck died. It seems almost ludicrous to say that but this is actually, really a lot worse. I could pretend back then. I could act normal and look normal and make people believe I was normal. I was a pro. I had my trusty friends sex and alcohol and off-the-charts sociability to get me through the super rough spots.

I could pretend it all away. Until I couldn’t. But the simple truth of the matter is that by that then, after so many years of self deception, I had accidentally learned some things in spite of myself. And time passed. And it got better. Somehow it got better. It stopped feeling like I was going to die every minute of the day. And I started to be OK. More than OK. I was better. I was happy.

But this? I am failing. I try to pretend. But I inevitably fail. I just get too tired. My body just gives out. It won’t play along. I think I have it in check but then I run out of fake positive thinking and it all comes crashing down on me. I haven’t felt this hopeless in a very long time. I don’t even know what to do with this feeling. I tell myself, let yourself feel it. Don’t try to hide from it. It’s not going away. You have to go through it. But I don’t know how. I don’t know how to go through this.

I’m exhausted from trying to figure it out. I’m exhausted from the effort. I’m exhausted from trying to act like it’s all OK. I’m exhausted from admitting that nothing is OK. I’m exhausted from never, ever feeling normal. I’m exhausted from the sheer effort of doing small things. I’m exhausted by the energy that goes into walking the shortest of distances that really don’t get me anywhere. I’m exhausted from sadness over all of the things I want to do but might not be able to do anymore. I’m exhausted from talking about it. I’m exhausted by writing about it. I’m  exhausted by all of it.

I feel so completely alone but for the first time in a very long time that feeling feels really scary. I can’t even relate to my own best friends. I can’t fit in with people I love. I can’t figure out where this is going. Or how to manage life while it goes there. I want to think this is temporary but what if it isn’t? I want to get used to it, accept it and just move on. But it just keeps changing. I can’t accept what I can’t even begin to understand.

This is so fucking hard. I can’t pretend this away. Or socialize this away. Or drink or do any of those other things I used to do to make bad things go away. It never goes away. And I can’t figure out what to do with my life if this is what my life is going to be like. I can’t get my head around that.

Maybe that’s where blind faith comes in?

Maybe you have to tell yourself that it’s going to be OK even when you know very well that it might not be. Maybe that’s the only way to keep going when something like this happens. If you try to face it, it laughs in your face. If you try to ignore it, it knocks you on your ass. If you try to accept it, it changes into something else and you’re not quite sure what you were accepting in the first place.

Maybe faith is necessary when you run out of good reasons to believe that everything will be OK. I’ve always been bad at optimism. I’m even worse at hope. Maybe I have to get better at both. I can’t imagine life just being like this. I can’t. So maybe I just lie to myself and pretend that it isn’t. Maybe eventually it will get better. Maybe time will work some magic just like it did the last time. Maybe acceptance is bad in this case. Maybe acceptance is giving up.

Maybe that’s what faith is. Believing in the unbelievable. Now, that just sounds ludicrous too. I make fun of people who blindly believe things that are so openly ludicrous. I should probably stop doing that.