This whole thing was bound to catch up to me. Eventually. I knew the day would come when I’d be forced to face the fact that this disease I’m still getting used to would get the best of me and my attempts to limit the impact it has on my life.

The one thing I’ve remain committed to not allowing this disease to ruin for me has been my job. I might have had to be wheeled into meetings or drag my dead legs into the office when they are moving so slow it might not qualify as real forward motion but I did it. I’ve dragged my useless carcass into work or work situations that required my presence regardless of how extreme or ridiculous it might look from the outside. It might have sucked. Ok. It always sucked. But I did it. I made it happen. I paid for it! But I made it happen.

Until now.

I am finally faced with the situation I’ve generally been able to avoid thus far and that is the time when I would be physically unable to participate in something really important at work because the timing that my MS dictates just doesn’t line up with the timing of client life. I finally got the official approval on my Lemtrada. The annoying people at my insurance company have finally given in and accepted that my treatment is “medically necessary.” I’m officially scheduled for Lemtrada Round 1 the week of November 5. This should make me super happy. This is what I wanted! This is what I’ve been waiting for.

Until it’s not.

I won’t get into the reasons why it’s not such a great time because that’s not relevant here and I’m not in a place where that would be appropriate blah blah blah just know point blank that this timing is terrible. On top of the work timing being shitty, I also just realized I am having my treatment during mid-term election voting. I will be dragging my raggedy immuno-suppressed ass to a public polling place to cast a vote before I show up for Round 1 Day 2 infusion day because that’s just the way it is. I need a printer to request an absentee ballot. I don’t have a printer. I thought this was 2018 and most important things that need doing can be done on the internet but no! Apparently the internet makes everything easier except for performing one’s civic duty during a really, really important mid-term election. Why is this not more shocking to me?

But I digress.

I will be hooked up to a mad serious scary juice machine pumping my body full of chemicals that will destroy most of my immune system during this singularly important time in my life whether I like it or not. There are times when MS wins. This is one of those times. This feels like the first real time but that’s a big fat lie because MS has been winning more than I have these last several years no matter how hard I try to pretend it’s not. Regardless of how little I am willing to let it ruin the one thing in my life it hasn’t totally ruined yet, it’s really going to give it the old college try this time. I’m going to do my best to not allow it to happen but I’m not sure how much I can actually control how my body will react to this treatment and its aftermath. It’s just the reality whether I want to accept it or not.

I’m pissed off. I’m irritated. I am openly hating everything about this timing but it is what it is. I’m not in the driver’s seat and I know it. Finally. I know it. The whole idea of doing this hail Mary of treatments is to attempt to get back to a place where my life feels bigger than my MS. That’s the whole idea. Give up a bit more now, to get a bit more later. At least that’s the goal. Give up NOW. Get more LATER. Maybe.

I’m also missing out on other things too. I’m missing out tonight on celebrating a happy day with my family because I wasn’t up for leaving the house this evening to join them. I had to be up early this morning (again). I didn’t get enough sleep last night (again). So my body is telling me to sit the fuck down (again) and pay the MS tax because I have another early morning tomorrow and the tax needs paying.

I have spent the afternoon today being pissed off about what I can’t do and the terrible timing of all of it etc etc but then I read an Instagram post about another MS blogger who found herself with a whole lot more than MS. Her family posted a message to her Instagram account (@dontmswithmorgs) letting her community know that she had gained her angel wings a few days ago. Morgan not only had MS. MS became the least of her worries along the way when she was diagnosed with stage IV cancer, in addition to other rare and serious genetic immuno-deficiency issues. She blogged about the whole experience and inspired many people. She was only 25.

I mean…Jesus.

I chastised myself for not having my head on straight. I gave myself a stern talking to about gratitude and the important things in life. Here’s the thing. Nobody can tell you what those things should be. The things that are important to you  might not be the same things that are important to me. The fact that my work is such a large part of my life probably has a lot of you shaking your heads about now tsk tsk’ing about how I need to re-emphasize what’s really important in life but you know what? Fuck that. I get to say what’s really important to me. I know there is more to my work than my work. I know why it matters so much to me and it’s not about making lots of money for a bunch of mostly middle aged white men I don’t even know who make a lot more money than I ever will. That’s not why it’s important to me. It’s not about my ego. It’s not about accomplishment or title or perceived importance. It’s not about any of that. And you know what? I don’t need to feel bad about what I feel bad about on top of feeling…bad.

Obviously, it’s me I’m trying to convince and not you at all. You have proven yourselves entirely non-judgemental and full of love and grace. I’m the judgemental bitch around here. I’m the one who needs the talk, not you. As usual.

I’ve been told over and over and over again how hard these first years after diagnosis would be. I’ve read your stories and I know there is hope that eventually life won’t feel like all MS all the time. I know there is hope. I believe it. But I’m in the thick of the mess right now and it’s pissing me off. The messier it gets, the more I am forced to acknowledge how little control I actually have, the angrier I get. I am forced to acknowledge, too, that shit could get a whole lot worse before it gets better (if it gets better at all). I mean, Morgan isn’t here anymore and she was 25 years old. It’s just so not fair.

Something happened today that made me remember about what’s important to me in this life. I had to sign a bunch of legal papers today where my actual legal name was required. Apparently, there were a bunch of “otherwise known as” versions of my name that were listed under my legal name and I had to sign each of those names, too, I guess to make sure all of us were legally bound by the rest of what I’d agreed to sign. One of those otherwise-known-as-names was Beth Foley.

Beth Foley was my married name. I changed it back to my maiden name after my husband was gone because to be 100% honest, I didn’t really need to have his family name after he was no longer here. Those people never treated me like family and did even less so after Chuck was gone. I wanted to be my old self again so badly that I went through the courts to get my name changed. I had to go through the courts to get my name changed because there is no precedent in the state of Pennsylvania for how a widow can change her married name. If I had been divorced, I could have paid $7 and filled out a form at the courthouse and BOOM: name change accomplished.

But, no, that would be too easy. Pennsylvania required me to file court papers to change my name in the same way I would have if I wanted to change my legal name from Beth to Beatrice. I had to research online how to do it. I had to get finger printed and run advertising in three local newspapers announcing my intentions (as if anyone actually would see my ads in three local newspapers that nobody actually reads anymore). None of this was cheap, mind you, or convenient but I really wanted my old name back. On top of the the time and expense, I had to act as my own attorney and present a motion in a courtroom in front of a judge. Our exchange went something like this:

JUDGE: You’re filing a motion in my court to return to your maiden name, Nigro, is it? [he pronounces it wrong…I’ll let you guess how] I have to say I’m surprised you’d go to all this trouble to get that particular name back.

BBAD: Um, well, your honor {and I used that term loosely as it turned out} I would like to go back to my maiden name and the process requires me to go through the courts since I’m a widow and not divorced.

JUDGE: Huh? Yes, Mrs. Foley, I suppose you are correct. It kind of makes you wish you had divorced him before he died, doesn’t it? You could have saved yourself a lot of time and money. {He chuckles while looking at me over his glasses.}

BBAD: No, in fact it does not. I believe my paperwork is in order and my motion is complete. I’d appreciate if your honor could approve my motion so I can get back to work. Thanks so much.

You really can’t make this shit up. Men in high places do not always conduct themselves with the dignityy their positions may imply but that’s how it goes. I got my motion approved and I had my (regrettable?) name reinstated and I left the court room victorious.

I haven’t signed my married name since that day until this day. It felt very strange. Like the minute I signed that old name my life screeched into a slow rewind and I sat there at the conference room table stupefied by the enormity of life, man, and how crazy that shit is! Luckily for the other folks in the room this moment of instant reflection was truly an instant. It was like time stopped for my mini-walk down memory lane and I was the only one catapulted into the distant past full of memories of another life for what felt like a really long time. I signed my married name and then signed my own name at least 25 times until it felt right again. Also, I love my name! So screw that judge.

Anyway. I needed an attitude adjustment and I got one thanks to Morgan. Thanks to Beth Foley. Thanks to this blog that allows me to write my way out, just like Alexander Hamilton did on Broadway, to work through my messiest of feelings until I read them over myself and have some kind of epiphany that shouldn’t have been so hard to get to in the first place. Words on a page are my way of seeing through the mess. I always end up writing my way out, even when I don’t really want to. I really wanted to be in bed by now! But this exercise in words on an electronic page needed to get out and now I can go to bed and maybe get some actual sleep.

I remembered my way while I was writing this horribly selfish blog post. Life will be there when I come back to it after this treatment. Whatever it is, however it is, it will be there if I’m lucky and I will be grateful for it. And grateful for health insurance. And people who love me. And all of that important stuff. It will all be there. No matter what. It might be different. But it will be there.

Thanks to you, BBAD readers for giving me the venue, and you, Lin-Manuel Miranda for inspiring me do it. I wrote my way out, again.