What is a time of joy for many women was my darkest hour.
Two weeks after my 30th birthday, I ended up in hospital with my first major incidence of Relapsing Remitting MS.
I lost sensation in my legs. I could still walk with difficulty, but couldn’t feel anything to the touch. And under my skin, I had tight pins and needles that felt like a clamp tightening my bones.
Once I was admitted to the hospital, they wouldn’t let me leave until I had an MRI. It was all pretty conclusive: I had an auto-immune disease, most likely MS, but no one could 100 percent say so until I’d had the obligatory tests.
The lumbar puncture was a particular highlight. It wasn’t as bad as Google said (“You’ll be paralyzed from the waist down”) but it was way more painful than doctors promised. I’ve never sworn so much involuntarily. I even apologized to the doctor doing it, which was stupid in hindsight. He was the one sticking a super-long hollow needle in my spine.
Then there was the waiting. It was five months from my hospital stay until I saw a consultant, and in that time, unmedicated, my body played havoc, having fun attacking my nerves.
I got optic neuritis waiting for an appointment and couldn’t see out of my left eye for weeks. The pain was like a GoT head wound, direct stab to the temple. It wasn’t the best time of my life.
But I went to work for two hours a day (I was teaching writing classes) then went home to bed, ate ice cream and fell asleep with Netflix. I know I wasn’t a joy to be around, but life wasn’t a joy to be in at that point.
I’m not, nor will ever be, one of those positivity people, swearing that the good that’s happened to me is down to having a positive attitude. If that’s how you roll, fine. Everyone deals differently. But I call total bullshit.
Being negative has helped me more. And perseverance, sure. But show me a person diagnosed with MS or an auto-immune disease who didn’t want to quit their life one time. That’s just normal.
And it’s also how you grieve: for what you had, and lost, and won’t have again. You don’t have to be happy about it. And trust me, I wasn’t.
Since finding out I have MS, the worst things in my life ever have happened to me: My marriage broke up, I lost a bundle of friends, I cried more than, like, ever.
I saw a counselor because making any sort of decision when you’ve been dealt a card like MS is so hard. You don’t trust yourself to know what’s best. Your foundations are sandy. You worry that the way you feel now won’t be the way you’ll feel always. That your feelings are a product of your shitty situation.
My counselor helped so much, made me learn to trust myself, that my feelings aren’t silly or stupid, and that anyone saying they know what’s best for me better than I do isn’t acting in my best interests.
Gradually, I found strength in that. But it was bitch-hard-to-do.
My family basically tried to stage an intervention, albeit over the phone. They thought my emotional outbursts and dissatisfaction with life were unfounded. They actually called me up one time and told me to take anti-depressants.
Not that there’s anything wrong with taking them, but there’s absolutely something wrong with family members making sweeping judgements about your mental state and writing magical invisible prescriptions for pills. Especially when they’re not physicians.
The trouble is, when you’ve been diagnosed with something so fucking massive, you’re constantly questioning yourself. It’s a confidence-quaker. Which is why you’ve got to surround yourself with people who completely have your back.
Since finding out I have MS, some of the best things ever have also happened to me. First, I've met a special person who I can communicate with on a purely Facebook stickers level, and I think that’s pretty amazing. (If you’re also a FB whore, you’ll understand).
Second, I've moved across the country; I was living 400 miles away from my friends and family, and that had to change. Now I have people I can call up and see 10 minutes later. And these same people won’t judge a thing I say to them.
It’s not that I didn’t have any friends where I lived before, but a bunch of people gradually moved away because employment prospects were so poor. And the people I thought I could rely on -- well, it wasn’t that simple.
When I tried to open up to them, invest in those friendships, be honest about who I was and what was happening in my life, all I got were platitudes, about things I should and shouldn’t be doing. And I don’t think that’s friendship, at all.
If I tell you a secret, treasure it, especially if it’s about something shitty I did. You’re meant to protect me, not berate me for being a bad person. Fuck people that do that, seriously. Life is problematic enough. There are ways to express concern without making someone feel worse about their life.
Getting MS has forced me to make brutal friendship decisions – who do I have time for and who has time for me? I’ve never felt better blocking so many people on social media.
Even if my body feels like horseshit half the time, my friends don’t judge me, don’t pander to my illness, or define me by my disability. Instead, they joke about it.
Which might not work for everyone, but for me there’s nothing’s better than being called a “whingey cripple cunt” by my besties (the nickname coined by a Taylor Swift fan upset with a review I did of one of her gigs).
Some of my friends work in a diner, and when they count out their tips at the end of the day, they joke that the collection box for the MS Society is where they keep mine. When I’m tired, they tell me I look like shit.
They don’t state the obvious like some people (of course I’m fucking tired – I have a permanent illness!). There’s no explaining to do, and that’s fucking awesome.
I'm also having the kind of sex I thought only people in TV shows had. If you don’t think it exists, I’m here to tell you it does, and I hope it doesn’t take an incurable illness for you to find it.
Being sick has definitely made me more persistent when it comes to sex and coming in general: I want to know that my body can, because there was a time when it couldn’t. And I’ve read that sometimes nerve damage is irreparable and orgasms get lost for good. Which is why I’m fucking as much as possible now.
Do I wish I didn’t have MS? Sometimes, sure. But has it changed my life for the better? Definitely. I’m tougher and time is precious. I’m learning to do what I want for the first time ever. And that's kind of great.