Greetings from the Slog Fest.

I stole that term, Slog Fest, from a very good and reliable internet friend, who I’ve actually met once in real life, who I actually consider one of the most important members of my MS Tribe. I’ve been in a bit of a muddle. A quagmire of lameness. A swirl of dysfunction and bodily chaos. A mountain of “poor pitiful me.” I needed some wisdom from a fellow traveler. It was exactly what I needed this morning and it got me to thinking…

I’ve been wondering lately if all of this writing and sharing and putting it all out there for the world to see isn’t actually working against me in some way. And maybe working against you, too, dear reader who might have come here to be inspired or uplifted or something else lofty and important at which I happen to suck. I’ve tried to convince myself that I need to hop on the positive thinking train and stop wallowing in the mess that has become my psyche. But I find myself with nothing uplifting to say. So I say nothing.

Over the last two plus years since my diagnosis with MS, I’ve collected  pretty amazing group of Internet friends. People often scoff at the idea of “digital friendships” and how social media is the devil. A scourge on “real life” and how we should all be out there LIVING OUR BEST LIVES and not wasting our best selves on the Internets…blah blah blah. I struggle with the amount of time I spend on social media bombarding my brain with ever more arcane knowledge so I did what any intelligent person would do. I tried recently to significantly curtail my mindless scrolling. It had to be a good thing, right? I mean, the WORLD basically tells you it’s a good idea. Even the New York Times tells us so.

It wasn’t a good thing for me. And I’m gonna tell you why. It’s because of you people. Yes, I blame YOU. I blame you for being there for me, for getting me, for understanding my need to not succumb to sunshine and rainbows but my simultaneous need not to succumb to the deep, dark thoughts that are always lurking inside the nooks and crannies of my broken brain. You are my Internet village and you guys are fucking smart and funny and basically a font of free wisdom and support that I had no idea I needed or would find on the EVIL INTERNET.

(Also, as a writer, I feel compelled to note here that I hate the superfluous use of ALL CAPS in any form of writing…it makes me feel like I’m under estimating my readers, like I need to make sure they get how important certain words are by TYPING THEM REALLY BIG and that’s just a sloppy excuse for poor writing…and yet here we are. My writing degree mocks me.)

Back to the important stuff, my Internet village gets me through some deep, dark times (much like my actual real-life village that I literally couldn’t live without) but they do it from a place of deep understanding of what this disease actually does to a person. My Internet village knows what this MS thing is like because they are living it, too. It’s not the same for all of us, I mean, MS is never the same in any two humans, but some of what MS brings into each newly diagnosed life is staggeringly consistent.

The psychological impact is not to be down played. Neurologists and MS specialists are woefully ill-equipped to deal with any of that. Therapists come in handy, but sometimes even they don’t help so much because they’re not living this either! Well, unless you’re my therapist, who also happens to have MS, but that is super rare and more than a little bit odd. It sometimes leads to sessions where we discuss her pathology and the fact that she sometimes feels personally responsible for “giving me MS.” We mutually agree that this is crazy talk coming from a woman with a doctorate in how brains work, but it’s part of our bond. Our mutual craziness works for us.

In lieu of some fake-ass attempt at positivity when I am feeling anything but positive, I’ve decided to give credit where it’s due to some of my digital tribe.

Here are just a few really helpful things my Internet Village brings to my so-called-MS-life attributed to those folks who have been so kind and amazing to go out of their way to be in my life, if only via bits and bytes that live somewhere in the cloud…Also, I should note that any such list would inevitably leave someone important out but here is my best shot (first names/blog names only for privacy):

My Joda (my Facebook friend Jo) – we were mutual friends of a Facebook friend and somehow got to talking about life and things when I found out she also has MS! Um, what? Joda, as I’ve come to call her, is like my own personal MS Yoda. She does a fantastic job of setting me straight without discouraging me. Wisdom she has! Hence her pretend name, but she has one thing in common with many of my Internet village and that is she’s been in the game a lot longer than I have. She encourages without blowing sunshine up my hind-quarters, a skill I value a great deal.

My Sciencey Brainy friend Alicia…I met Alicia, again, through another rando Facebook connection. Her kid needed an iPad for some speech therapy he was about to embark on. I had an extra iPad. Connection made.

To summarize the series of bizarro coincidences inherent in our meeting, I offer you THIS: 1) Alicia lives about 5 minutes from my house, literally 2) she has a background in immunology research, which means she speaks in science and fact, logic and attribution (I am obsessed with her a little bit, as a result, and I’m sure I’m super annoying), and 3) she ALSO has MS!! I mean, what the hell are the chances? Oh, also it is important to note that Alicia is funny. Funny  like only really smart people can be funny. She cracks my shit up on a regular basis.

The short story is that Alicia has become a valued sounding board because not only is she an experienced MS-er further into her journey than I am, but she also satisfies my deep-seated inner science nerd obsession. I not only need to know what the mechanism is behind various treatment options but I need to know why. Ask The Great Scott himself! I’ve done so much research into this disease and its associated medications that I can answer the questions he zings at his residents better than the damn residents. Thanks to Alicia, TGS hasn’t stumped me yet.

The Three Amigos (me, Kara and Adrienne) – we started off meeting online through various MS-related Facebook groups and eventually my blog. We’ve developed into a threesome of critically important mutual support, information and virtual belly laughs that I count on daily (yes, we usually chat daily!) to flat out keep me going.

On the surface, we seem to have little in common. We live in Maine, Pennsylvania and Texas. We all have different lives, different jobs, different challenges and different stages of this godforsaken disease. But we are more the same than we are different. To say I’ve come to rely on these two women to hear me, help me, listen to me and always to make me laugh is an understatement. Thanks to Kara, I’ve seriously upped my GIF game to pro-level (and have learned how to be nicer to myself). Thanks to Adrienne, I’m getting better at remembering how to have hope and give great pep talks without sounding like a sanctimonious asshole. I’ve also learning from Adrienne that having faith is important. For now, I have faith in HER faith, and that’s all I can muster. But sometimes that’s enough?

My go-to bloggers – they inspired me in the first place with their writing. Then some of them inspired me with their invaluable personal advice in more one-on-one ways.

MS Tripping On Air has taught me so many things but very tangibly I have her to thank for my handy new trekking poles (Laurel & Hardy, I call them). I also have her to thank for my dedication to being true to my MS voice and not succumbing to the pressure to sugar coat things. I suck at sugar coating. I excel at realistic/pessimism wrapped in a sarcastic candy coating. MSTOA got that from the very beginning.

BBHwithMS helped me with moving down the path of learning more about the role cannabis can play in this MS life. She’s gone through the darkness and come out the other side (for now, we know to always say “for now”, but still!). She’s funny, smart and a veritable font of knowledge when it comes to MMJ. It inspires me to read about BBH’s early mobility struggles because I am neck deep in my own right now. It can be hard to envision how this phase of my MS life will ever get better! But it’s gotten better for BBH. Not only have I read about it but we’ve actually spoken about it. ON THE TELEPHONE. Like in the old days before the internet came along and ruined all verbal human communication. You guys, brace yourselves. The tiny computer you have in your hand can also be used for talking with your actual mouths and hearing things with your actual ears! I know! You’re welcome. Again.

Then there’s Devin. Though we’ve never met or chatted even on the Internets, I read his writing rabidly on multiplesclerosis.net where he is a regular contributor. I related to his writing from the beginning. I relate to the sense of loss that this disease can leave us with. This disease affects everything! Our relationships. Our careers. Our social lives.  Our very sense of self. I relate to Dev’s dedication to sharing these hard-to-talk-about subjects because they need to be talked about. I read everything he writes and I’m never sad that I did.

There are a bunch of other MS blogs/writers I’ve added to my regular reading lists…you probably have many of your own! But I encourage you to keep reading them. Sometimes they lead to actual real valuable connections that extend well beyond the written word.

There are so many other members of my virtual MS village, there are almost too many to name.

There’s Freddy who writes to me regularly and helps me remember that this thing I do, this writing, isn’t a terrible waste of time. There’s Jill who may actually be my west coast alter-ego and soul sister. There’s the Stumbling Princess who blows my mind on the regular with her adventures and exploration of the world. I have neither the stamina (nor the desire really) to even try to have adventures like the Stumbling Princess has but I freaking love reading about her ability to do so. Vicarious travel, to me, is sometimes the best kind. I was never big on schlepping even when I was “healthy.” I’ve always described myself as decidedly indoorsy but I love reading about other people’s adventures.

Then there’s Stumbling in Flats who helps me understand that this MS life crosses all boundaries (she’s in the UK and I’ve learned a ton about universal healthcare from reading her experiences that have given me a ton to think about…mainly that no health care system is ideal or problem free).

The Instagram world has been great to me too! Again, too many to list here but @blackwidowsleeved_mswarrior, @damselinadress.blog, @laray_ms and so many others have all given me things to think about, consider and expand my perspective.

When one is in a low-down very dark place, it helps to have one’s perspective expanded. Luckily, this machine I’m typing on gives me a super easy, relatively effortless way to start that necessary expansion process. Even if your legs don’t work well enough for you to go out there and find a tribe, your fingers can help you find some support. Or your voice, if your fingers don’t work. You get my meaning. There is a world of support out there. Even when there’s no easy answer, it helps to talk about that fact with someone who gets it. Someone who is also living it.

I’m still neck deep in mentally preparing for my meeting with The Great Scott on April 17. My third Ocrevus infusion is scheduled after that on April 23. After that, the hopes and dreams phase of life begins anew as I will cling to the desperate hope that I can live some kind of meaningful life even as MS seems intent on destroying me.

Hopes and dreams have come into and out of my life so often these past two years post-diagnosis that I’ve come to look upon them warily. I’m regularly giving my hopes and dreams the old side-eye, waiting for them to be dashed again the next time I face-plant while trying to walk or do other normal-person kinds of things.

My internet tribe helps me get through both – the high highs of optimism and the lowest lows when reality insists on being dealt with.

I have this crazy idea that some day I’m going to be able to travel again and when I can, it won’t be just some work meeting I get to go to but maybe I get myself to Maine. Or Texas. Or Seattle or Toronto. I love the idea of my internet village becoming a real-life village. That’s a dream I can get behind.