I find myself in shades of grey more often than not, these days.
When I decided to call my blog bethybrightanddark.com a few friends told me it sounded more like a blog about bipolar disorder or mental health. While I don’t have bipolar disorder, you very well could say this actually is a blog about mental health. MY mental health. But it also meant more to me than just that. The name of this blog was inspired by how this disease makes me feel like there’s two of me. One that is regular fun, happy me. And one that is old, crippled, useless me.
It wasn’t the first time I’d felt these two me’s take up residence in my life.
I read a novel a very long time ago called “Lisa Bright and Dark,” by John Neufeld. The book was written in 1969 and is a young adult novel about a high school girl who is slowly losing her mind and nobody believes her (not her teachers, counselors or her parents). Nobody believed her but her friends, who decide to help her by performing their own version of crude high-school-girl group therapy that they create based on gut instincts and some scanning of encyclopedias and psychology books.
It’s a short book. Simply written – but when I read it in my early teens it pretty much hit me directly in the gut. I never thought I was losing my mind, per se, but I related to the idea of having two personas battling things out inside one fairly normal looking, relatively socially acceptable body where other folks would probably never guess it was happening at all.
I was in high school when I read “Lisa Bright and Dark” but I read it over and over again throughout the years even as I grew older. The picture above is of my copy – both covers have broken free and the pages are beginning to turn brown. I just read it again this past week. I may need to spring for a new copy.
I never knew it at the time, but much, much later in life I learned that some of this phenomena could probably be attributed to the clinical depression that I was diagnosed with in my twenties. But back then, I didn’t know anything about depression. Nobody I knew suffered from depression. That wasn’t a word we used in our very normal, regular family. I just knew that I felt like there were two of me. The bright girl who was bubbly, social, extroverted, outgoing and loved being at the center of it all, no matter what “it all” was.
And the dark girl.
She was nothing like the other one. She liked rainy, gray days. She preferred to be alone. A lot. She’d go days at a time wishing she didn’t have to leave the house or see any actual other people. She spent a lot of time chastising herself for not being more normal. She hated herself for being a fraud. She ripped herself apart from top to bottom on a fairly regular basis. She was never pretty enough, thin enough, smart enough, stylish enough or happy enough. She knew that she really wasn’t the Bethybright that everyone seemed to love.
Back then, I thought that when people found out what I really was inside, nobody would love me. Nobody would want to be around me. I would wind up old and alone and lonely – and I made myself believe that this outcome would be devastating. I always felt like both bright and dark lived inside of me, but they were in a battle. The bright, socially acceptable me would do practically anything to make sure the real me, the dark one, never got out. At least not in public.
A combination of therapy and medication, writing and time (a whole lot of time) helped me finally get to the point where I finally felt both of us could live in here at the same time and not hate ourselves. We felt OK.
We got through some majorly crappy life stuff, that is for sure. But we were OK. I kept on thinking of myself as Bethy Bright and Dark because I never wanted to forget that it is who I really am. I am both one and the other, all at the same time, and that was just the way it is. I was finally happy. It was finally OK.
Then I got MS.
I was thrust down the rabbit hole, once again, of trying to hide what I was, who I was, what was happening to me. I was freaked the hell out. What if not being graceful, even moderately athletic or even always basically “able,” wasn’t OK? What if I couldn’t do things? Even everyday things, like taking a shower, required major effort and planning. I knew I couldn’t wear my beloved cool high heels anymore, my fashion choices became severely limited as a result, and I found myself sometimes not even wearing makeup. I am a girl who loves makeup, people. I love it a lot.
What if I was not myself anymore once this disease got a hold of me and began ruining basic stuff like walking, talking, thinking, seeing, hell, even sleeping? I sometimes feel like there’s not one shred of my life that this disease hasn’t changed. I often don’t even recognize myself. Bethy Dark has been winning a lot lately. You may have noticed. The lack of makeup is a dead give away.
I go around and around on this every day, these days. I still don’t really know what this disease means. I know intellectually that I have a damaged central nervous system and that interferes with my ability to do things. But I kept hearing of this thing called “remission” and I have been waiting for the remission to happen to me. I just always feel shitty so I assumed I was always in a relapse. Finally last week, it hit me.
I was in the infusion room telling Nurse A about the various symptoms I’d been struggling with. I told her how I felt like I was tanking fast. I had days where walking even across the street was challenging. I had days where I couldn’t even rake leaves or carry groceries. I had days where I was seeing double and having extreme trouble concentrating.
I thought this stuff would stop happening once my drug kicked in. I thought that was what remission meant – no longer having symptoms. That’s why I thought Tysabri wasn’t working for me and why I convinced The Great Scott to consider every-other-month for my treatment (until the new and safer wonder drug is FDA approved in December). I just assumed it wasn’t working because I constantly had new symptoms. That had to mean I was in constant state of relapse.
Nurse A let me ramble a bit, my fellow infusees looking on, until I finally finished my rant and took a breath. And she said, “I don’t know how to tell you this. I don’t want to upset you or make you angry. But all of what you’re describing? That’s just what it’s like having MS. It never goes away.”
She explained to me that a relapse means you are experiencing new disease activity and things are getting much, much worse often times involving hospitalization or immobility or very severe reactions like blindness. Relapse usually requires IV steroids to stop the progress then back you go into “remission” where you get back to your new normal. You go back to a your new normal life where you randomly wake up with new and different MS-related weirdness – like my inability to walk or my random double vision. It only counts as a relapse if these symptoms last longer than 24 hours.
Otherwise, “That’s just your MS.”
Those words came back to me again today in an email from my neurologist’s office responding to my questions about recent labs. I wondered if there was anything in the labs that explained my recent issues – like the vision problems for example. And Carol, the office nurse, used those exact words. “Your labs are relatively stable. That’s just your MS. Nothing to worry about.”
Nothing to worry about, indeed.
The truth is, since infusion I do feel better. I walked pretty well today. I stood on one foot for 10 whole seconds! Each foot! (Seriously guys, my standards are not very high.) I didn’t sleep all day today. I don’t hurt all over – just normal places where every almost-50-something person might hurt. I am planning on finding a way to attend my company holiday party in December in Atlanta because I should go and because I really, really want to go! I’m not even lying. I want to go. Today? I feel like maybe I can. Last week, I was convinced it was impossible.
But tomorrow might be different. And the day after that too. The truth is, all of this is “just my MS.” THIS IS THE WAY MY LIFE IS NOW. I think for the first time since my diagnosis almost a year ago I am finally starting to accept that this is just my life. It’s my new normal. Maybe it’s time I stopped fighting it so hard. Maybe it’s time I just figure out how not to let it ruin me (not all of me, anyway).
I could be entirely full of shit and this Bethy Bright-ish thinking pattern might be completely different tomorrow. But that’s what this blog is really for: To remind me that it’s not every day that is darker than dark. Some are just gray. And I’ve always liked the gray days the best.
Maybe just gray is OK.
(Post Script: Technically, I guess I really did wind up old and alone…but I’m nowhere near lonely and this life, however challenging right now, is full-to-over-flowing with so much love. I wish I could tell the 16 year old me.)