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.