Dealing With A Diagnosis

I read this thing on FB yesterday, and while the first line was something I could sort of relate to, the majority of the rest of it was not.

The opening line had something to do with there being certain moments in your life you would never forget – when you realized your husband was about to propose, the birth of your child, and being told you had MS.

Now…I don’t know about those first two moments, per se, but I imagine they are fairly unforgettable. And I agree that I probably won’t forget receiving a diagnosis any time soon.

But the whole rest of the post was so different from my experience that it’s almost funny.

Optic neuritis was the writer’s flare up which led to her diagnosis, same as mine.

She received a phone call; I was sitting in my neurologist’s office.

She’d waited a whole four days to find out why she couldn’t quite see out of one eye. I waited the better part of a year, which was still obscenely quick for an MS diagnosis. I lucked out in that all of the specialists had an idea of where my path was leading, and knew what to look for.

She collapsed to the floor sobbing and picturing wheelchairs; I went to work for the rest of the day.

Her husband held her like he’d never held her before; I dealt with it on my own, alone.

Mind you, I’d also done a ton of research. As soon as the possibility of MS came up, I went online and started reading about all of the horrifying things the disease can do to your body, but I also started looking into the 3 first line medications my neurologist told me he’d be considering if MS turned out to be what we were dealing with. I went into various forums and learned first hand what other people experienced with each one, and how they dealt with the side effects.

I even watched a video of someone giving herself an injection, but I was pretty sure I would be going the pre-mixed Pen route instead.

Anyway, there was one appointment when I thought the neurologist was going to call it, and I took the day off work, just so I’d have time to process. He didn’t, though, so I had a decent enough day off from there. The day he DID call it, I actually wasn’t expecting it, so still felt a glimmer of shock roll through me at hearing the actual words.

Then all my research brain stuff kicked in, and I told him which medication I’d decided to try first. He was super impressed that I already knew so much, and we filled out the application form right then, which he faxed in from his office. I was learning to do my first injection within a couple of weeks, I believe.

I asked a friend to come over for the injection training session, in part to help keep the kittens out of the way, and in part to help me remember the steps for when I would do the next one on my own. Probably also just so I wouldn’t be alone. Nurse Billy wasn’t the most comforting presence ever, to be honest. I dealt with the side effects alone, however. And they sucked. But I got better at it once I knew exactly what I was dealing with.

I remember Tim went ahead and set up a brunch/interview/chat with some filmmaker friends for the next morning. I was so mad – I had no idea how my body was going to react to the injection, let alone how I’d feel in the morning. I made it out, but hadn’t slept much and was still feeling many of the flu-like effects the whole time. I got better at managing the immediate and next day side effects, but man. A little consideration after that first injection would have been nice!

Anyway. Mostly I am glad that I can do these things alone, and don’t feel the need to have other people around me all the time. If I ask someone to go to an appointment with me, for example, or any of the tests I have to get done, I tend to focus on them more than on myself. I feel like I have to talk to them, entertain them, do something to make sure they’re not too sorry they came with me. But sometimes I don’t really want to talk. Sometimes I just want to wait until it’s my turn to get it over with and move on with my day.

Sometimes – most times – I’d rather just stay inside my own head for awhile, and not feel like I have to interact and be “on” all the time.

Do I think that makes me better than the lady who wrote the post about being a mess and having a large support system? Yes, yes I do.

Haha

Not really; it’s just different. Part of me is mortified at the thought of not having the time and space to process things on my own. But part of me is jealous of that level of support and help from other people.

Above all, however, is the understanding that I chose my own path, each and every time, for better or for worse.

The fact that I am mostly successful in making it work for me is what makes me awesome. Well…one of the things, at least!

Wednesday Thoughts

Before I woke up this morning, I was dreaming something mundane – I think I was just getting ready to go to work, actually. I’d found a new pair of jeans, which I’d forgotten I even owned (because in real life I actually don’t). They still had those plastic sizing strips on them, but an abundance of them, which I had to peel off first, because it’s just embarrassing to find out you’ve been walking around with tags and the like still on your clothes.

Whoa – I just typed “clothes” as “close” and had to correct it. Sleepy much?

Anyway, it was taking me longer and longer to get ready to leave, and I kept checking the time and getting more and more stressed about how late it was getting. I was excited to wear my new surprise jeans, though. They were still going to be a bit big, but better than most, and not full of holes like my real jeans are. I remember trying to decide which belt I should wear, too. As in, which one is falling apart the least. It’s a real-life dilemma found in even the barest wisp of a dream.

Anyway, the thing is, when I actually woke up, I remained confused about what I had to do with my day in real waking life. That sense of disorientation continued on far too long for my liking. It was actually a struggle to remain focused on getting ready for work without thinking about the new pair of jeans I didn’t really have, if that makes sense. My brain kept going back to the dream life and I’d have to consciously force it back to real life. Weird.

In other news, there was an impromptu puppy party on my street last night! Brody and I were out after work, as usual, and it was not only a nice evening, but also the time of day pretty much everyone is out with their dogs. We ran into one of his treats ladies, and she was already talking to another lady with her dog, and then more people and dogs just kept coming by to join in! We had a good 6 or 7 dogs on the go at one point, all greeting each other and each other’s people and Brody could often be found in the middle, gazing longingly at the treats lady in case more treats came his way! He’s taken to pre-sitting in anticipation of possibly getting a treat now, instead of waiting to be asked to sit for one. Silly puppy. Silly clever puppy. ❤

Tonight is The Mind Reels’ almost-all-girl rendition of a Flash Gordon episode from 1935! And the Reelie award winners announcement! So excited! One girl had to back out, unfortunately, but since it’s because she booked a gig on a new show, it’s not really that unfortunate! We’ll just have to get her back when she’s able! There are still three lovely ladies joining us, however, and I think it’s still going to be pretty epic. Or hilarious. Or both. I’m really looking forward to it!

I’ve been thinking about something Gord said during the Hip concert on Saturday night; about how we’ve been trained our whole lives to ignore Canada’s northern Aboriginal people, and how we’ve learned not to listen to anything that’s happening up there. He said he thinks it’s maybe even worse now than it’s ever been. I got this idea suddenly to maybe do something with The Mind Reels blog page about it, specifically with high school kids, perhaps. It’s a vague notion, and I don’t know if it would really work or be beneficial to anyone in any way, but there’s a seed of a thought I want to talk to Tim about. If it doesn’t work out with Mind Reels, then maybe I could still reach out and make something happen with this blog, or set up something else entirely. I was reminded of a simple exercise I’d done in teacher’s college with the kids in the Grade 7-8 classes I was teaching during my practicum. I hadn’t really expected it to go as well as it did. Not that I thought it would go badly. I just hadn’t anticipated how willingly some of the kids would open up about themselves and their home lives once they knew someone was listening. Not even that, really – I think it’s more that someone asked them. I’m learning that we all generally do like to talk about ourselves and things we are passionate about and the dreams we have for ourselves. Not in an ego way, but rather in a someone-is-interested way. Even the quietest kid in our Grade 8 homeroom – the kid who opted out of pretty much every assignment because he wasn’t feeling the participation vibe ever. That kid filled out a sheet of questions about himself…told a whole story about something that happened when he was living on a reservation up north before coming to the city. Then he actually spoke at length about some of it – out loud – with the whole class listening. We had to listen hard because he was speaking so quietly from his desk at the back of the room, but still. He was talking, and we all were listening. It was probably the only time all year that you could hear a pin drop in that room, because every kid in there knew what a rare occasion it was, and for once no one felt the need to spoil it.

So we’ll see. Maybe there’s a way I can help give kids an outlet; a space in which to discover and share their own voices.

I’ll just, you know, add it to my To Do list.

Seeking Home

I remember the day I realized I really couldn’t go home again.

It had felt at the time like everything had happened pretty much all at once. I mean, my parents had already divorced and sold the house my brother and I grew up in – the house they’d built, in fact – years before, but that still smarted some (she says, as though it doesn’t still).

I’d returned to Toronto as a failure at life, and subletted probably the worst apartment I’ve ever seen, let alone lived in, which I was later forced to sign a year lease on, so I was definitely ready to get out of there once my lease was up. I tried to rent a cute little Jr 1-bedroom in the building I’d lived in before trying to move to the US, but my application was turned down immediately because I’d filed for bankruptcy.

That stung, too, as I’d just been living there less than two years prior, and there had been no problems with my tenancy then. As well, I had virtually no debt, and a full time job, so in that sense, I could have been the perfect tenant. But I get it. Bad credit is bad credit, so I moved on, and tried to quell the fear that I’d have to take something as equally horrible as the space I was trying to escape.

It occurred to me then, that my childhood home was gone, the home I’d created with the person I loved was gone, and the building where I’d first learned to live completely on my own (with Kate the kitten, of course), was also gone.

Well, none of them were gone gone – just inaccessible to me. Which in my mind and heart was pretty much the same thing.

It’s funny, though, because I’ve always had this idea in my head as to what “home” meant to me; what it would feel like when I made it for myself. I don’t think I’ve ever actually lived anywhere which felt like that, though. Some have been close, but so far the best I’ve done is create a protective barrier to keep the outside world at bay when I need it. Haven’t really gotten to the homey feeling I’m looking for yet.

Anyway, all of that, naturally, led to me landing the amazing apartment I have now. It’s far from perfect, especially now with all the construction and such next door, but it’s my space, and I love it. Kate only got to enjoy it for a matter of months before she died, which will also always hurt my heart, because I always wanted her to have a better life than what I was able to provide. Same for the critters in my care now, though I’m able to give them better than I could Kate, and I’m still learning all the time, so that’s something.

Anyway, we’re making it home-like for us, and that’s the important part. Any other home I had are forever out of reach; lost to memory. All we can do is make new ones as we go along.

Maybe someday, one will even stick.

Alone Not Lonely

I read a post this morning online about women alone, as compared to men, in our society. It was interesting, and while some of it I’m not sure I agree with, the majority of it I found quite relatable.

I should probably include a link to the post, in case you want to see what I’m talking about. You can read it here, if you like.

So, there’s some discussion about how men are essentially allowed to be alone – we call them bachelors and they have their bachelor pads and man-caves and the like. There isn’t really a word for women who are alone – at least none that have positive connotations. Spinster, witch, crazy cat lady – it’s treated as an unnatural state for women to be in. Normal women are in relationships and surrounded by family and friends most of the time. It’s what we all aspire to, whether that’s because we were raised to, or society impresses that upon us, or whatever. Women can only lead happy, complete and fulfilled lives if there are other people around, whereas men can either let themselves get “tied down”, or hang out by themselves and enjoy their bachelorhood. They can choose, and both options are seen as perfectly acceptable. Women…not nearly so much.

Which I can kind of see, I guess. I hadn’t really thought about it – perhaps because I never really felt like I fell very squarely into either category, as far as general society is concerned. I think, to me, it’s more been the impression that preferring to spend time alone is often viewed as selfish, or antisocial, or the result of some sort of psychosis. Or some/all of the above. It feels, to me, as though it’s perceived with disdain in some regards. As a child, getting sent to one’s room is meant as a punishment, but I liked being in my room. I’d read, nap, write, play alone with Star Wars action figures, colour, listen to music – tons of things. I had a good imagination, and was very good at entertaining myself. Punishment for me would be to be forced to go outside and play. But technically I enjoyed that, too, so I guess it’d be more like, “go outside and find some friends to play with!”

Noooooo…..

The horror.

I think I’ve mentionned before that I would be an excellent shut-in type personality, if I could work from home. I would probably only leave to walk the dog. And now that I live with a dog again, I don’t really want to spend much time NOT living with a dog, so hopefully I will always be surrounded by animals and unconditional love. And we would go for walks together, because that requires very little effort on my part to be enjoyable for him. I pretty much just have to show up, and Brody is happy. He doesn’t even care what mood I am in – he’s just glad I’m there and that we’re outside together. I never have to, as the article thingy says, “arrange my face in a way that someone else would understand”. That goes for time spent in the company of animals, and time spent in the company of no one. Both are rather liberating, and I enjoy lots of either when I come across it.

But is that selfish? It’s antisocial, I guess, though I would also argue that it’s an excellent way to recharge my batteries so that I have the capacity to be more social as occasion warrants. Being “on” all the time takes a toll, after all. It certainly feels selfish, the idea of telling someone I’d rather be alone than hang out with them. So I try not to do that very often, because I don’t like feeling as though I’m not taking another’s needs into account in favour of catering to my own. Which I’m told would be a totally healthy thing to do, but it doesn’t feel good, so I don’t do it if I can help it!

The flip side, of course, is that I am also painfully aware of my inability to be a good friend or partner to anyone. So much time spent alone means that spending time with anyone else, or a group of anyone elses, is a huge thing for me. It’s stressful, and exhausting and taxing and frightening and overwhelming – along with all the good things it can also be, like fun, hilarious, emotionally-uplifting, creative…time with people you care about is priceless, really. It can take a load off, carry you forward, pick you up, and also recharge your batteries, just in a different way.

For me, so much time alone means that I get all that in theory, but have had very little practice, and am constantly noticing when I screw up, but haven’t quite figured out how to fix it when I do. Sometimes it’s a little like navigating a mine field, in a way. Like, do people actually want to hear what another person thinks? Or would they rather be listened to without judgement? It may seem like that depends on the person, but it also depends on the mood the person is in at that moment. And I’m terrible at picking up cues. Terrible.

I used to joke that I never knew if someone was flirting with me, which is true, but it’s also true for, like, everything. Realizing too late when I’ve pissed someone off, or hurt someone, or just misunderstood something and made another person feel un-heard or under-valued or un-loved. It’s like what’s happening in my mind is either way slow or way off whatever’s happening for the other person, and by the time I figure out what was going on for them, the damage is already done.

I feel like I’m behind and playing catch-up almost all the time. Like everyone else made the jump and I’m still back near the start, only just now realizing that everyone but me has already moved on.

That makes me not easy to be with. I don’t know if I am easy to talk to as a friend – I assume that also depends on the person and the mood and the situation. But I know it’s not as fulfilling as it could be, were I better at it. I’m definitely not an easy person to be in a romantic relationship with. Sometimes I feel like I should apologize to everyone who’s ever dated me, though logically I know that’s ridiculous and that no one is perfect. I do wonder if knowing how much I struggled, and that I did so because I wanted to be with them, would make any difference, though. Sometimes.

I guess the fact that I find it hard to communicate with others, while often preferring my own company to that of other people, makes me at least lazy – if not completely selfish – when I opt to be alone. It’s just easier. But also enjoyable, and rejuvenating in its own way. So there’s that.

And when I do choose to inhabit space and time with other people, it’s because I really want to. Not because I am desperate for companionship, or that I need to be in a relationship in order to feel fulfilled, or that I’m afraid to be alone, or any of the other assumptions that can be made. It’s because I want to be with that person or those people at that time. I love my alone time, I love not having roommates, I love not having to arrange my face. Being around other people means I have to give those things up, and even though I do my best, I know it’s not always what is needed or even wanted by said others.

When I choose to sacrifice those things I love and hang out with other people instead, there are various reasons for doing so. Some aren’t even that flattering or well-intentioned to mention.

Sometimes, though, I forego those things I love simply because I love you more.

Sue’s Big Day Off

This will just be quick because I’ve had a long day and am exhausted.  But a post is a post, even if it’s mostly pictures.

I was up early (for a day off, same time for a work day) to head downtown for some quick Orphan Black interviews.  The show’s 4th season begins tonight (actually I guess it’s over about now) and The Mind Reels is always happy to help promote it in any way we can.  We actually know both cast members pretty well, and between them and the lovely PR ladies taking care of the press, it was a line of hugs all around once we were all in the same room.

On top of that, actually, we talked off-camera about our new ideas for the show and the support we received for it all got me pretty excited again!   I think it would b so fun to get that going, so I hope we can pull it off in the near future!

A lot of day off stuff happened – TV watching, laundry, long walk with Brody in the sunshine – but then it was time to head back downtown to meet Lil Bub!!!

At last!

I managed to get through the whole meet and greet without crying, even as I pet her sweet wee head.  She’s really small.  Bless.  She’s also amazing at meet and greets.  No way would any of my cats put up with being pet by so many strangers!  And while I kept my tears in check, Imdid not managed to escape the area without buying something in the merch area.  In fact, Imrefused to leave until I’d settled on something!  I could have been taking for pics of Bub’s amazing face, but instead, I did mental math to see what I could afford.  Good grief.

Anyway, I got a copy of Lil Bub’s Big Book, finally, and gave it a quick read before the screening.  I laughed out loud a couple of times, and generally just got happier, so yeah- I regret nothing!

Speaking of the screening, I wasn’t really sure what to expect from a cat film festival, but it was completely awesome!  So much laughter.  Such silly cats.  You could tell who in the sold-out crowd could relate to each  video – they were the ones laughing the hardest.  And even though I’d seen some of the clips before, watching them unfold on the big screen was magical.  AND we got to watch the pilot episode of Lil Bub’s Big Show, which is definitely one of my favourites.

Now, however,  I must sleep, as I have another big day planned tomorrow.

I’m going to the zoo.  😀

imageimageimageimage

image