Life, Transit, and Holding Onto Alysia

Had kind of a harrowing morning – not for me, but for others. Came the closest I think I ever have to watching not one, not two, but three squirrels get mowed down by vehicles while I was out with Brody. One was literally right next to us, but on the street instead of safely on the sidewalk. Luckily all of them escaped, but my heart did not. The drivers didn’t even slow down. There’s zero need to be driving that fast on a residential street, especially with a school right there. You can slow down enough to at least try and avoid taking a life. I mean – it’s life. If you can’t respect a life, then what else is there, really?

Then on the subway a woman next to me collapsed just after we left the station, so we had to wait until we got to the next station before the train could stop and someone could come take a look at her. I feel like that whole system is flawed. Everyone around her reacted appropriately – she was determined to get up so people helped her and got her into a seat while another person activated the emergency alarm after someone else said to. Part of me was thinking that it wasn’t really necessary – the woman insisted she was fine, although they did help her off the train once we got to the next station. And she said she didn’t need medical assistance, which – I don’t know if she ended up getting any, or not. But everyone in that part of the train reacted quickly to take care of her, which was great to witness.

However, there’s also the delay to the entire line every time that alarm is activated. They have to stop and investigate, and the vast majority of the time the person isn’t in need of medical/fire/police intervention, so much as they just need some air. Which – don’t even get me started on how the transit system neglects to take into account the fact that we are all dressed for being outside, and therefore do not need the heat cranked when we step on board the train during the winter months. There’s not enough room for all those people AND their layers of clothing and outerwear once they’ve removed as much as possible to adapt to the sudden heat. It’s ridiculous. Just circulate the damn air, already.

Anyway, what was I trying to say? I know it’s unrealistic to expect people to wait a moment before activating the emergency alarm, to ensure that it’s actually an emergency that requires further intervention and assistance. But at the same time, activating it immediately didn’t make any difference. The train still had to proceed to the next station before anything could be done, and by then the woman was doing much better, and could have just gotten off at the next stop, anyway. I guess I just wish there was a way to alert the train operators to what was going on without having to hold up the whole line longer than necessary. I don’t know. I don’t really have any solutions. I just was thinking about it this morning after everything happened because it didn’t feel quite right to me, while also realizing I didn’t know how it could be better or more efficient.

Yesterday I wrote about the end of my first relationship, and actually still feel pretty good about the process of writing it all down. I wrote most of the words I didn’t want to write, and the few I left out actually weren’t required for getting the point across, so I call that a win. I wouldn’t say it was easy, at all, but it definitely wasn’t as difficult as I feared it would be. I also didn’t feel down after; my different mood and mindset since starting this little project has remained in effect, despite reliving some of the more heart-shattering moments from my little lesbian relationship journey. That process may also be somewhat responsible for the little crush I have going on lately, which I haven’t had for quite some time. Maybe it’s a coincidence and they aren’t at all related, but maybe it’s not. Either way, I intend to continue with both writing and crushing for the next little bit, at least, and see how things go. Like, for me, I mean. I don’t expect anything in my real life to change, but I am thus far noticing a change inside me – in terms of mood and state of mind, mostly – and so far it’s all positive, so I want to see if that continues at all, or if it’s just a temporary high brought on by alcohol and lack of sleep. Haha

Last night and today, I’ve been thinking a lot about Alysia. I realized that I am starting to forget things; about her, and about our friendship. She’s been gone, like, 2 and a half years now. That’s far longer than I knew her. We were friends for months, not years, and while the length of time has zero to do with how much I loved that kid (our connection wasn’t instant, but still pretty close), it came as a shock to realize not only how long it’s been already, but also how much longer there is to go without her being in my life. I’m starting to feel almost disconnected from her now. Not in an “I’m over it” kind of way, but rather in the sense that I can’t feel her as well anymore, her presence in my world. I’m forgetting little details, and I only have a small yet finite number of my own memories to draw from as it is. That I’ve known and loved her mom and brother so much longer than I knew her is…not wrong, exactly, but not right, either.

It’s hurting my heart and pissing me off at the same time.

The only upside is that it makes me want to just sit and hug Brody all the more right now. That much, at least, is never a bad thing.

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!

Crutches

I didn’t drink at all last night.

Well, water, but no alcohol.  And while there have been a handful of similar nights in the past couple of years, since my close friend died, it’s been pretty rare.  Since that day, alcohol has been my nightly companion.

I’d cut way down, too, for quite awhile.  Alcohol doesn’t go well with my MS meds, because both can be hard on the liver, but I’m not a fan of giving up things I love forever and completely, so cutting back was as far as I ever intended to take it.  But then the world changed, and suddenly I was back to an every night beverage again.

I feel like my grieving has changed – it’s become a part of me, instead of something I was doing.  I didn’t go through it so much as absorb it, I think.  I don’t feel like alcohol is as big a part of that process anymore, but instead it’s taken on a different role.  Grief has taken up residence inside me, so now other things – anger, frustration, sadness, fear – my method of handling any of it usually involves taking the edge off with a drink or two.  It’s become a part of me, too.

There’s always been something.  Some kind of crutch.  Nail-biting, gum-chewing, smoking – pretty much all suggestive of oral fixation, really.  Smoking was the hardest to quit.  I loved it. LOVED it.  I’d smoke before getting up in the morning, while walking down the street, watching TV, multiple breaks at work, after every meal, and before bed.  I had zero interest in existing without a cigarette in my hand.  Kicking nicotine was hard.  Kicking the habit was harder. Getting past the idea that I needed a crutch – some kind of barrier between myself and the world – is something I still struggle with.  Struggle and mostly fail, of course.  Especially given that I’m writing this as I polish off tonight’s beverage number two.

But it’s my shield.  Not having it sometimes takes a bit of effort, depending on the day I’ve had, but for the most part, I’m content with knowing I can survive not having it, and that whether I have it or not is my choice.  Maybe that’s denial, but I’m actually pretty impressed with my willpower, and I don’t often feel the need to prove myself to anyone but me.  I hate feeling judged, but at the same time, I recognize that the feeling comes from me.  If someone wants to judge me, that’s their problem.  If the feeling affects me, then the problem is mine.  And I am my own harshest critic, after all.

So, while the way my coping mechanisms manifest has changed over the years – and will continue to – the fact remains that I always have one.  And I am okay with that.  I can recognize it for what it is, realize that I don’t need it, but accept that I like it and choose it.  And when it no longer works for me, I know I can let it go – maybe for awhile, maybe forever – and that I’ll still be okay, even if I don’t pick up another crutch right away.

But I probably will.