Don’t call it a comeback

I got cocky again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was a weird (but amazing) day

I’ve been feeling crappy. I cannot lie. I’m super run down. I would sleep 24 hours a day if that were remotely practical. My walking has been meh, even with the use of my wonder drug. Apparently, even when taking an amazing new drug, you can still have bad walking days. Color me informed.

The season is changing right in front of my eyes and I’m torn about how I feel about this reality, hence my last post about my complicated relationship with the sun.

It makes me think of all of the seemingly easy, basic tasks that come with the change from Winter to Spring. Putting some things away, taking out others. Cleaning off the front porch and maybe planting some flowers. Fighting with the storm windows so I can get the screens to fall down into place. Putting the hose back on the rack outside for watering purposes. Changing the dreaded closet…shoes…coats. Changing out the curtains and slip covers, the blankets and quilts to put away.

All of the stuff. So very much stuff.

All of that stuff used to make me happy, or at least I thought it did. I had fun with clothes. I looked forward to getting dressed each day. I knew it was ludicrous to have seventeen different winter coats in every color of the rainbow but I thought it made getting dressed each day like an art project. I liked to change my color scheme in the house from winter to spring. I have slip covers for certain furniture for different seasons. I used to even change out my area rugs (I don’t do that anymore).

Lately, as I’ve gotten a much needed jolt into the real world by my life circumstances, my relationship to all of that stuff has changed right before my very eyes. I don’t know what hole I was trying to fill in myself, or what deep seated fears of poverty I was fighting. I don’t know when or how money somewhere along the line came to mean security and safety to me, above all other things.

I’m full of shit. I do no know when. It was after Chuck died. But it started before that. It definitely intensified afterwards, but it was in me all along. Hell, it was in both of us. Being married to Chuck was fun, not in small part, because we shared an obsession with cool stuff.

Chuck’s family had money. He liked having money. He lived like he had money even when he (and we) didn’t. When he didn’t like his job, he quit. I was aghast at this reality. I would have never considered quitting a job just because that job sucked. Jobs mostly sucked, I knew, from a lifetime of having them in order to have any money at all. For Chuck, though, not making money wasn’t the biggest fear in his life, like it was for me.

I made sure we were covered financially, no matter what or no matter how much I hated whatever job I was in at the moment, because somewhere in a life where I wasn’t overwhelmed with stuff, I became obsessed with having as much stuff as I could. It made me feel safe. There is probably an entire segment of years in my therapy with Cheryl where we will uncover the reason why I have always been made to feel secure and happy surrounded by stuff. But it’s just a simple fact. We didn’t take money from Chuck’s parents if it could be avoided. We took care of ourselves but we still spent way more money than he or I ever had.

I grew up having everything I needed but we didn’t really have money like Chuck’s family had. I was well cared for. I had things that most kids want. We had Christmas presents and clothes to wear and three new pairs of tennis shoes each spring (red, blue and white for dress) from Sears. My sister and I had matching outfits on holidays and most of the dolls and Barbie’s we wanted. But we were not rich. In fact, I’d say we were sometimes downright tight on money because my dad worked a blue collar job as part of a union. When he worked, he made lots of money, but when he didn’t work (and he didn’t work a lot) we had to scrimp.

I never liked the scrimping part. Maybe I was flawed from birth. Or maybe the feast or famine nature of my growing up years created in me a definite longing for more feast than a tolerance for famine. I wanted much more feast. When my parents couldn’t or wouldn’t give me money for the stuff I wanted, I had jobs for making money that remedied that situation. Well, not entirely, but I could fake it just as well as the next kid.

I went to high school with some rich kids, probably the first really “rich” people I’d ever met. These kids wore clothes with logos on them, brand name jeans and fancy leather shoes from fancy stores in Shadyside or Squirrel Hill. Some of them got cars on their 16th birthdays (some of them got really nice cars). I definitely learned to like things well out of my price range. I always wanted nice things. More things.

I am not proud of any of this but it’s just the truth.

Now, I find all of this stuff to be entirely stupid on one hand, and embarrassingly wasteful on the other hand. My job, and any money I make from it, has become a pretty functional thing to me. It means I can afford my medicine. I can get the care I need. When I need help with something I can usually afford to pay for said help. I take some really expensive drugs. I feel overwhelmed with gratitude that I can even consider doing that. Even when the drugs don’t work, or make me crazy, I’m still grateful.

I don’t need all of this stuff. I don’t really even want (most) of it. I realize, instantly, how privileged I am for being able to make such a statement. I feel like the stuff is in my way, sucking up my energy, wearing me out with its constant need to be moved around, managed or dealt with in some way.

I’ve been trying to pay it forward, you could say. It’s really rather practical. I’ve spent my life acquiring more shit than any human needs, now I want to give it away when somebody might like to have it, might need it or just because I think they’d look cute in something I used to love wearing but really don’t so much anymore.

I’m trying to donate things where I can. I definitely donate more money now than I ever have but if I know someone needs something that I have, but do not need, I want to pass it along. I don’t want to sell it.

This is complicated because it can go wrong really quickly. I don’t want to be seen as some benevolent Mother Theresa wannabe because I am clearly not even close. The vain, selfish, insecure and materialistic parts of me got me to this place. It’s nothing to be proud of. I want to be proud of my success without having to be obsessed with all of the stuff. So I’m working on that.

I never want to make someone feel like I’m giving them something because they are needy or somehow pathetic to me – that is never even close to the truth. It just makes me happy to be useful. Maybe it makes me feel less guilty for being such a mess of a person for so much of my life. I’m sure in many ways, it’s the most selfish act of all.

That won’t make me stop doing it. I like to find a way to help someone, give someone a happy surprise, or a much-needed break.

I was able to do that today for a stranger, and I honestly believe it’s proof that I get more out of these acts than the receivers ever do. Here are the basic facts of what happened to me today:

  • I saw a post on Facebook from someone who needed something for a really important reason and was more than willing to pay for it.
  • I had said thing in my house and never, ever use it. Like never. It was being wasted in my possession.
  • I messaged this person and offered her the thing she needed for free.
  • In the course of our messaging back and forth, I explain that I’m trying to get rid of stuff because of my recent diagnosis of MS and the fact that I have way more shit than any human ever needs.

This is where shit gets weird. She tells me she was diagnosed 13 years ago herself. Wait. WHAT?

She and I have basic human things in common like politics, values, ideas about how life should be. I tell her it would make me very happy to drop off the item to her house because I knew it would be harder for her to get out to pick it up herself (she has kids) and I was kind of looking for an excuse to get out of my house. So that is exactly what I did.

Talking to someone who has MS is like meeting a complete stranger who knows you better than your very best friend or even your mother.

It’s the most difficult thing to describe but it’s a basic knowing of what this is like that is literally impossible to communicate to another human who doesn’t have the disease. Hell, even The Great Scott and his team very clearly have trouble understanding what it’s like to have multiple sclerosis. When you try to describe it to someone who doesn’t have the disease you wind up feeling stupid because, well…everybody gets tired. Everyone has problems. Everyone has aches and pains. All of us are getting older and all of our lives are constantly getting harder. You just can’t describe it well enough to help anyone who doesn’t have a chronic disease even begin to fully understand what it’s like.

But, meet a complete stranger who has MS and it’s like…BOOM.

They just get it. They say things you instantly get and could have said yourself, things like, “Yeah, Provigil did nothing for the physical fatigue it just makes you hyper focused. It was invented for fighter pilots who had to stay alert for extra long missions. So you end up laying in bed physically finished, like you cannot move, but your brain is like POW POW POW.”

OH MY GOD YES! YOU GET ME! THIS IS WHAT’S HAPPENING TO ME HOLY SHIT YOU GET IT! OMG I AM SO RELIEVED!

This incredibly smart, incredibly strong complete stranger manages having this disease whilst taking care of three children on her own. She is basically a super hero to me. We chatted for a bit at her dining room table while her daughter quizzed us on state capitals (neither of us got very many right) and then chemical symbols (my new friend got ALL of those right since she worked in immunology research and has a degree – or many – in biology). I was blown away by this woman. And by this entire experience.

How did this even happen? I was doing something really easy for me to do. I was giving away something I didn’t need. It was selfish, really. But I got out of it so much more than inventory reduction.

I found a new friend with whom I could discuss my questions about the new drug and how it’s awfully like the old drug that she is currently on. She gave me a name for the obsessive practice I have of not running out of my meds (she called it creating “a medication buffer” and holy crap! Yes!) She talked of resources I wasn’t aware of. It was really easy to talk to this woman. Like we’ve known each other our entire lives.

But honestly? I was nice to have a real conversation with a real human that didn’t involve me typing. I guess I don’t realize how rare that is outside of my very close circle of friends, my family and people I work with. It was just beyond nice.

So while I’m on the record for not really believing in any true benevolent god-person who is pulling the strings for all of us from some far off place where people fly around in white robes with fluffy wings…I have to believe the universe is somehow working. Things like this just happen! There is all the proof you need.