Sometimes I think I’m better now, or getting to be better. A better, more interesting person. I feel as though my thoughts, words, and pictures; that they all have validity. Or more validity than they once may have done. Everything is separated into before and after. I’m talking about MS, Multiple Sclerosis, the second black dog in my life. The one that’s impossible to lose, like the first one seems to be sometimes. Too bad neither of these are the fun, fluffy type of dog – I think I could more than come to terms with a dog like that – but neither is something I would wish on other people, or welcome with open arms.
I look at a timeline of pictures and try to figure out whether each was before, or after. It hasn’t been that long so I can pick them out by dates, by months, by where I was mentally in this whole process. I look happy in some. Stupidly so. And I was. I am. But I also look younger in the “before” pictures. Age has hit me rapidly in the last two years – maybe not noticeable to others, but the change is drastic to me. The weight gain, the skin changes – there’s just something about my face that isn’t me anymore. Resting-bitch-face has always been one of my physical attributes, but now it’s more permanent, more of a frown that’s next to impossible to hide.
On my commute, I become incredibly self-aware sometimes. As is usual for any bus trip, or at least how any bus trip seems to me, someone always ends up looking at me, and for a little too long. Call it social anxiety bubbling away and making me overthink, but I swear I feel them looking at me and I think about how I must look to a stranger. Like someone who hates taking public transit, someone who thinks they’re better than everyone, maybe even like someone who hates the world. None of those things are true, but I’m convinced that’s the impression I’m putting out.
It’s on those same commutes where, if I have a seat, I glance up with panic every time we come to another stop. Never wanting to be seen as inconsiderate, I look around and judge others – more-able bodied, less deserving of a seat. I don’t want to give mine up, but I will if I have to. I imagine scenarios where I have to face my biggest fear (at least in this situation) – having to speak up and speak out to justify myself, “I have an invisible illness! I have MS! I have vertigo and vision issues and I’m so tired I just want a seat!”.
Once, before my actual diagnosis, I did it. With my headphones in, people assume I can’t hear them, or I’m not listening, but the paranoia of being judged as non-seat-deserving means that sometimes I’m not even listening to anything except for those around me. A woman standing nearby, seemingly in her mid-60s, said to another (seated) passenger, “The problem with young people these days is they’re so oblivious and so entitled, they aren’t aware of those around them who might need a seat more than them”. My face went red – not because I wasn’t aware, but because I was right in the thick of it – I felt attacked, and like I had to defend myself, so I did.
“Actually, I have MS, so I’m having some balance problems right now, and I’m grateful to have a seat”. Though the balance problems were true, and, though I didn’t know for sure yet, so was the MS, I still felt overwhelming guilt. The woman apologised, instantly, sheepishly, mumbling an apology and something about knowing someone else with MS, how terrible it must be. To be honest, I’m not sure which part of this moment was worse. Was it that I’d told a small white lie (at the time), or that I’d received sympathy from a stranger? Either way, I felt bad enough about the whole situation that I got off the bus five stops early, walked the rest of the way home in my own personal gloomy rain cloud, and never told anyone else about it. Sometimes I even wonder if taking ownership of the disease before being officially diagnosed solidified my eventual diagnosis. This can’t, I know, truly be a possibility, but people do say all sorts of things about the wonders of positive talk, and this was the opposite.
Looking at the bigger picture of the past two years, I know that things haven’t really changed that much, but sometimes it appears they’ve changed infinitely. I am a walking cliché – I am a different person. A new person. Excuses come more easily to me now, and I justify the making of these as effortlessly as breathing. Exercise is difficult, gaining weight is a side effect, I need to be gentle with myself, I’ve had a hard time. Sure, these things are true, in some circumstances and on some days, but there’s also the guilt I feel, knowing that so many others have had a way worse time of it. Other illnesses, cancer, death, poverty, homelessness – even the majority of those with the same disease have probably had a rougher go of it than me. Lengthy hospital stays, years of confusing symptoms, loss of a job, a partner, mobility – how do I even compare to that?
To avoid a rhetorical question, I’ll answer myself with the facts: partial vision loss, a month of pain, occasional vertigo, and flare-ups of those three things from time to time. Then comes the near-relentless fatigue that may or may not even be MS-related, but it’s easier to say it is because it’s a way to excuse the many other explanations for the constant tiredness. I feel like this defines me now, and I’m scared because, other than being good at my job (and am I even really that, truly, anymore?), I don’t have anything to offer in the world. I get by with pep-talks, reminding myself I’m intelligent and sometimes humorous, and that I have a few skills or things I can do a smidgen better than other people, but is it enough?
The question of whether it’s enough, whether I’m enough, can wait for another day. I started writing this as a way to put some feelings on paper, digitally-speaking, of course, and I’m just starting out. I’m not sure if there’s any validity to my words, any point to my musings, or, as I’m typing this, whether anyone else will even end up reading this. I’ve said over and over that I want to write, so I’m writing, and while this isn’t quite what I had in mind, it seems to be all I know. I’ve never written any fiction worthy of a second glance, even by me, and while this current piece of writing isn’t entirely negative, I’m not winning any prizes for positivity or uplifting inspirational prose. In making an account just so I could post this online, WordPress asks you to select a category for your blog, and for some reason, I chose “Lifestyle/Inspiration”. The “Personal/Random Thoughts” category felt too, well, random, and none of the others quite seemed right. So maybe someone out there will find some inspiration or see something of themselves in my openness, and at the very least, maybe someone will appreciate my point of view, and justify my thinking that I’m better now, or getting there.
One Constant 