I admit it. I took the title of this post from a random song on my Pandora station, because believe it or not, I suck at titles. It’s true. I’m a writer and I suck at titles. We all have our burdens, and that’s one of mine.
It’s not the only one I’ve been chosen to bear, either. More on that in a minute. I’m going to cut here for those who might not want to read this, as it’s personal and highly sensitive in nature. There are things in this post that might be difficult for the more sensitive amongst you to read, so if that’s you and you want to read on, you’ve been warned. Put on your Big Person Underthings and cope. Here we go.
This post is difficult for me to write for a number of reasons, not the least of which is that I truly have no idea why I’m writing it. I just know that it needs to be written. See above about me being a writer. I write. That’s what I do. Special thanks to Andrew Jack, Skyla Dawn Cameron, and He Who Enables My Crazy (the husband) for things they know they’ve done. Onward.
I’m going to do this post in FAQ form in order to cover all the things I think are relevant. Comments on this entry are also going to be closed. You’ll see why. If at the end you feel compelled to contact me, please see my comment policy and possibly rethink that.
So, here’s the thing. I have MS. No, not “manuscript,” though the irony of the letters is not lost on me. MS, the degenerative neurological condition – Multiple Sclerosis.
Go ahead. Take a minute to process that. It’s okay. I needed a minute to take it in when I found out too, ten years ago.
Now over to the Q & A.
Q: Dina! Why didn’t you tell me! I thought I was your friend!
A: Because it’s my issue and none of your business. Any friend of mine knows they’re on a “need to know” basis with me and you clearly didn’t need to know. It has nothing to do with my regard (if any) for you. Also, I rarely talk about my condition even with people who know me. If I haven’t met you in person, you likely haven’t been told. Don’t take it personally.
Q: Well I am taking it personally! You should have said something! I-
A: Yeah, I’m going to stop you right there. This isn’t about you. It’s about me. If you know anything about me, you should know that I don’t say shit to anyone about anything because I don’t want your pity, your concern, or your coddling. If I need your help, I’ll ask for it. Until then, fuck off. Side note: I have very few people I consider friends. It is likely that you thinking you were one of them was purely one-sided. My friends have no doubt of their status in my life.
Q: Can we talk and be friends because I am sick with something too?
A: I’m not “friends” with people with chronic illnesses; I’m friends with people who fucking cope. Further, this is my issue and I’ve been coping for ten years. I suggest you learn to cope too, because I have no sympathy for you or anyone else. Also because I don’t want to hear you whine about your issues.
Q: Dina! I’d have thought you having something like that would have made you more sensitive to the tribulations of others!
A: If anything, my condition has made me less tolerant of whiny little bitches.
Q: I know of a support grou-
A: Stop right there. Turn around. Go back the way you came. What about this post in any way gives you the impression that I would enjoy sitting in a room with a bunch of people whining about how hard they have it? This is MY reality, and I’m not going to make everything MS Hour Featuring Dina. Also, I don’t want to add to the slew of people broadcasting their personal demons of late. It seems as though the trendy thing to do lately is wave your issue flag to show you’re Just Like Real People, and it’s not about that for me. I despise trends and stay as far away from them as possible. I don’t bitch about my tribulations. I’m certainly not going to listen to other people cry about how hard their lives are.
Q: Tribulations? Like what? What are your symptoms? How does your MS affect you?
A: As you’re here reading this, I’m going to go out on a limb and consider for a moment that you actually give a shit about the answer to this, so I’ll give you an honest one. My primary issues are bone-crushing fatigue, cognitive and memory issues, balance and coordination, numbness, vision issues, temperature sensitivity, and some other things I’m not going to go into here because you can read all about things for yourself if you’re so curious. Pretty much everything on the common list, and some of the less common ones, too. And the tertiary ones. It’s interesting. Fortunately pain isn’t very high on it for me yet, but as MS is an ever-evolving, elusive bitch of a condition, things change from day to day. Hour to hour, sometimes. You just have to cope with things as they come and deal with new shit as it presents itself. There’s no constant, no predictability, no guarantees. Shit happens and you cope with it. One day you can walk just fine, the next day you can’t get out of bed. Or you’ll wake up fine and energized, and ten minutes later you’re back in bed because vertigo smacked you upside the head and laughed at your plans.
MS is an incurable, progressive, degenerative condition, which basically translates to “we can’t fix it and it’s going to get worse.” So there’s that. Whining about it isn’t going to change reality. Sitting around crying because you can’t do this or that or your entire world just dropped out from under you is NOT going to change anything. I grew up in a unique environment, and it was drilled into my head that if you sit still and don’t make a decision/adapt, you die. I realize I am uniquely qualified, if there is such a thing, to cope with this unpredictable condition. There’s that irony thing again. Let’s just say that I have every reason in the world to sit on my ass, kick back, and let the world burn down around me while I’m stoned out of my mind on whatever I choose to forget my troubles with and no one would say a fucking word to me about it, but I choose not to do anything like that. I face both reality and my fears head-on because I am no one’s bitch – not even my own mortal form. This disease is here, it’s not going away, and there’s nothing to do about it but cope.
So, that’s what I’ll do. Next question.
Q: Okay. I get it. You have MS and that sucks and I’m sorry. You know, I heard about this experimental treatment–
A: Look, okay, my fucking doctor knows more about treatments than you and Dr. Google. If an actual experimental treatment comes up that could help me, follow Skyla because she’ll be setting up the fundraiser if I need to get to it. Until then, chill the fuck out.
Q: Fine! What about alternative therapies? Are you into that? Can I send you medical advice involving tinfoil and/or cayenne pepper?
A: No, you may not. I am not interested in your magic thinking or Jedi cures, Rebel scum. My treatment is between me and my doctors, one of which is one of the foremost authorities in the entire country on my condition, so until he says something about cayenne pepper and tinfoil, stay the fuck out of it. He is extremely on top of everything alternative/experimental and very open to treatments far and wide. And no, MS is not caused by Lyme disease, despite what your fucking clickbait ads say. Nor is it a conspiracy involving alien experimentation. I’ve had this condition for a decade now, and I’ve heard it all, people. Stay the hell away from me. I didn’t do this post to solicit medical advice from the internet.
Q: Why did you post this, then? What’s this about? If you’ve had this for ten years, why are you only doing this now?
A: Again, NOT about you. This is about me, and this needed to be done for many reasons, some of which I don’t fully understand myself yet.
Part of all this stems from my realization that I am slowing down. Things are getting to be more difficult for me than they used to be, and believe me, that’s saying something. When I say something is “difficult,” that’s MY difficult, not your average little inconvenience. Things are happening now and it’s getting a little harder to roll with the punches. It takes more of my energy and concentration than it used to, and it’s pissing me off. I don’t Twitter nearly as much as I used to, I barely blog, I don’t vlog any longer, I consider 1k a good writing day WHEN I manage to have the spoons to get to my computer, etc.
I’m going to pause here for a second and do something I never do. I’m going to issue a < < TRIGGER WARNING >> right here for those with Feels that might not be able to cope with Difficult Subjects. Still, we’re talking about the reality of me, and this is part of that.
< < TRIGGER WARNING >>
This is grim but another reason for writing all this now is because it was pointed out to me that posting this might be a good idea while I feel I can, while I can still compose what I want to say and how I want to say it. MS is a very pissy disease, and if it feels like it, it can cut off the signal from my brain to my lungs and I won’t remember how to breathe. It’s not likely, but possible. So there’s that.
/< < TRIGGER WARNING >>
You can look now, Sensitive Person.
Q: So, you don’t want advice, or pity, or sympathy, or anything. What can I do then?
A: Again, NOT ABOUT YOU. YOU can’t do anything. I don’t want you to do anything. There’s nothing really you can do, except maybe donate to the MS Society in your country. Skyla Dawn Cameron did the MS Walk in my honor in Canada, and you know what? She’s fucking curing my MS by doing that. THAT’S RIGHT, PEOPLE! You want to help? Give your MS Society money. Sponsor a walker. Here. Skyla is doing it again this year. Go give her some money and cure this shit.
What else can you do? Don’t treat me any differently now than you did before you knew I was dealing with this in the “Oh, Dina, are you up to it?” or “Don’t tell/bother Dina…she has enough to deal with” way. Don’t buy my work out of pity or because you think I could use the money. I want people to buy my books because they enjoy my work/think it’s good. I’m not a pity fuck.
Don’t make special considerations for me unless I ask for them. Which brings me to another issue:
Trust me to judge what and how much I can do. If I can’t come to your convention or house or meet you for coffee or XYZ, trust me to tell you that. I promise, I have learned very well how to say “no.” If I say “yes,” it’s because I believe I can do whatever it is that’s been asked of me. I am honest with myself and others, and don’t take on more than I believe I can handle. I gave up bravado a long time ago. MS is nothing if not humbling. It will make you own up to your shit, I promise you. So don’t coddle me. I know people mean well, but if I need help I will fucking ask for it. Trust me to do that, or I will hurt you. Just because I’m disabled (I can admit it, it’s okay. I’m not ashamed of the word.) doesn’t mean I can’t or won’t kick your ass. Unless you’re my mother, asking me “how are you feeling” will get you punched in the face.
Even my own husband knows better than to ask me how I’m doing. If I’m having an issue, I’ll fucking say something if it’s important. Otherwise, go about your business.
Q: Is MS why you’re evil?
A: No. I was born this way. If anything, MS has made me more tolerant and understanding of fuckheads, which isn’t all that much more than it used to be.
Q: So what now?
A: Now, you go about your life as though nothing has changed, because really, it hasn’t. I’m still the same person I’ve always been, just now you know a little more about me. It’s not what I wanted, but as the great philosopher Jagger once said, “You can’t always get what you want.”
Having said all of the above, if you or someone you care about has been recently diagnosed with MS and you have questions, I’ll be happy to try and answer them, but I don’t tolerate whining well, so don’t whine at me. Curiosity is welcome. Pity is not.
You may now return to your regularly scheduled program.