I can’t talk to my friend Meg right now. Which is difficult because I also can’t stop thinking about my friend Meg right now as she is ensconced in a hospital room in Omaha after just having gone through a surgery that I am hoping with all of the hope I can muster gets my friend Meg some desperately needed relief.
It’s funny really. I’ve never actually spoken to Meg using my voice. We text. Or DM on Instagram where we discovered each other. But I consider Meg to be one of my best friends. She makes me guffaw with a surprise text message. She makes me teary eyed when I get actual hand written notes from her in the mail using her beautiful penmanship. We’ve never actually talked on the telephone but it’s hard for us to do that because Meg has been very unwell for a very long time and I’ve never wanted to ask more from her than she can give.
Meg is out and quite open about her complex medical situation at her Instagram account @meggieandMS so I won’t even attempt to capture the story here. You should go follow Meg yourself. Meg has faced her bucketful of suck with the grace of a saint and the mouth of a truck driver. She’s the cutest little bundle of horrifically ill human you’re likely to ever find. But this doesn’t make her cave up and hide when her life gets even more difficult. She shares that shit on Instagram – which in turn helps other medically complex people, like me, even when she’s neck deep in the suck with no end in sight.
Meg is often the first person I go to with the, “OMG IS THIS NORMAL OR AM I DYING” text because she is also an atypical MS person but she’s had atypical MS and a host of other chronic medical issues for a very long time. That she puts up with me doing this panic-texting on a semi-regular basis knowing what she goes through on a minute-by-minute level every single day of her life, has undoubtedly earned her a high-ranking spot in a blissful afterlife someday – whatever that afterlife might look like for you if you believe in that kind of thing. Because I’m ridiculous, y’all. And Meg has never bitch slapped me via text with a “girl get your mind right and stop being so self-centered” response. Not even once. And believe me when I tell you I have deserved that kind of response more times than I can even begin to remember.
One of Meg’s IRL besties is manning her usually very active Insta stories with brief updates for those of us out here wishing for all the good things for Meg and that is such an important job because I’m quite certain I’m not the only one out here on pins and needles anxiously checking Instagram every hour or so hoping for some update. Some pic of our adorable little Meg from her hospital room in Omaha where her sweet face is shining through her oversized eyeglass frames with the bright blue eyes staring back at the Insta-world reassuring us with their clear azure reliability that she is somehow going to be ok again. Some day. Maybe not tomorrow or next week or even in a month but you can be sure she’s thinking about all of us out here thinking about HER and that’s just part of what makes Meg such a goddamn exemplary human (she is also ace at digging up the most perfect GIFs for every occasion and TikTok videos about old ladies with MS leaving trails of snacks in baggies all over their houses because they might get hungry when they fall).
So in short, I’m out here having a shit body day where my legs don’t want to move from the ground (weakness is the worst) and where my arms are sore to the touch from having to use them so frequently to compensate for my weak lower body and where the tingles and bursting feelings coming from my swollen feet and ankles are about to drive me straight around the bend, hoping I don’t have to pee again before my useless legs (and really sore arms) are ready to carry me to the john again because I feel too weak and in pain to navigate my super accessible bathroom but I’m doing this while at the same time knowing that what I’m dealing with today ain’t shit when I give half a minute of thought to what Meg is dealing with out there in her Omaha hospital room. Meg. The girl I met on Instagram.
Funny thing that, about Instagram, I mean.
It’s the cesspool of humanity on so many fronts – where trolls go to harass fat-positive content and where folks go to fight about vaccinations or what incredibly strong opinions they have about everything from how you might choose to eat to how you identify from a gender, racial or any other category one can dream up. Sometimes social media feels like the poison that can shoot straight through to my soul and destroy the gossamer threads of mental health I’ve been so painstakingly trying to create for myself with the help of not one, but two, therapists. But in the midst of all of the toxic waste on Instagram there is a thing of such fragile beauty it almost defies the moniker “social media” because it is so powerful and necessary and at times absolutely life-saving, it is hard to believe the Internet can allow such a thing to exist at all and that is the chronic illness/disability community.
You might find folks by searching hashtags like #chronicIllnessAdvocate, #disabiltyAdvocate, #disabledAndProud, #wheelieGirl, #spoonie, #becauseMS and on and on and on. You’ll find amazing creators like @wheelchair_rapunzel, @nina_tame, @thedisabledhippie, @carson_tueller, @catchingbreaths, @damselinadress.blog, @creamcrackeredblog, @thislittlemiggy, @thechroniciconic…it’s hard to know where to stop! Every one of these accounts has affected my life in more meaningful ways than you could probably imagine if you’re one of the many folk out there who identify as able-bodied or as my friend Carlos (@elcaballonegrito) so brilliantly dubbed the abled population, if you happen to be a Temp. You might scoff at the idea that true, real human connection can happen without in-person, face-to-face contact. But you’d be wrong. So very wrong I almost can’t even begin to count the ways that your wrong-headed thinking on this topic might be summarized.
Some of the people I love most in this life are people I’ve never “met.” It might have started as an awkward DM reach out from me, likely asking a far too personal question, but then these weird Instagram direct messages spilled over into the more intimate (and privileged) texting arena and some REALLY special social media relationships actually turn into telephone friends. Yes! Actually talking on a smart phone instead of just typing! I KNOW. It’s uncomfortable for me to even type about talking on the actual phone using my voice. That’s how much Old Me avoided that activity. I’d rather do anything than talk on the phone. I’ll text virtual novellas for hours without ever thinking of dialing someone’s number and hitting that little green circle. But my Crip friends I’ve met on Instagram? I’ll happily dial one of them up and talk and talk for hours (I’m looking at YOU Daana). And I feel 100% hashtag blessed (even though when someone uses that hashtag on the socials it makes me want to poke out both of my eyes with a sharp stick).
But the fact that I found Meg out there in that cesspool of potential trolls on the socials? Color me HASHTAG BLESSED in all caps.
Meg is that special. She lets us share in her life with her husband who has become her sick-chick ride or die. She shares stories of the incredible slightly emotionally challenged Bear, the adorable smiling dog with separation anxiety. She shares the delight that are her parents, Momma and Papa Morgs with their RV and crazy visors and older-folk social media highjinks (it occurs to me here that Momma and Papa Morgs are probably not that much older than me)…another Crip social media community oddity. Age, race, sexuality or gender don’t seem to matter a whole lot when you’ve made that just perfect connection. I mean they matter because they always matter and intersectionality is a real thing. But bonds are made first and foremost based on the shared experience of dealing with a bucketful of sick-person suck each day and still figuring out a way to smile, laugh and get on with it.
This post will inevitably draw out the “inspirational” comments. I can almost feel their good intentions being hurled before the words are even out of the commenter’s fingers on their keyboards. But none of this is really about being inspirational. It’s just about the reality that every person you stumble across on the street or on the virtual streets that are social media has their own mountain of suck to deal with all unique to them. Some of this mountain of suck comes in the form of chronic illness or learning to live with( and maybe eventually celebrate?) their disability. Some comes in the form of invisible family situations that you know nothing about but they’re there anyway. Some of each person’s mountain of suck might come in the form of all manners of dysmorphia, mental illness, anxiety, work stress, not-able-to-work stress, kid stress, not-able-to-have-kids stress…you see where I’m going here.
It’s not about inspiration as much as it is about understanding and empathy. Understanding and empathy then form the basis for making real human connections that become important like my connection with you all has become to me.
Like my connection to Meg.
I’m not a praying girl, I think you all know that about me already. I send my wishes out to something that I assume is bigger than me in the Universe and I hope those wishes find their way into becoming good things for the people I love. If you ARE the praying type, maybe send a few up for my friend Meg? If you’re not the praying type, maybe send her whatever it is that you send when you want good things for a fellow human. Or just close your eyes and send out positive intention to Meg, Grant, Bear and Momma and Papa Morgs. I want to imagine then all awash in love because that’s my selfish wish. I want my friend to be ok. However that translates this time after yet another drastic medical intervention.
It’s the uncertainty that gets in your head and tries to take up residence there that turns things dark. Let’s make sure we gather the power of all that is good about the Internets and bathe Meggie in love so the uncertainty feels a teensy bit less overwhelming. As a dedicated realist this feels like a good wish. Help me make it happen, ok?
Lisa Langford
August 2, 2021 8:43 amBeth, YOU are one of those people for me. We were diagnosed at the around the same time and I have followed you and cheered for you, looked to you for advice and inspiration, and prayed the very same positive vibes and upswing in life for you that you now ask us to give to Meg. I WILL give time and prayers to your friend today because this community does make our challenges seem less daunting. We are all connected. At the end of the day, empathy and understanding, CARE, are all we want and the best we can give.
((((HUGS)))) and prayers for Meg, her family, and for you and yours. <3
Bethy
August 2, 2021 9:14 pmI am honored to be one of your people, Lisa. You made my day. And I’m so grateful for the prayers for Meg. This truly is an amazing community. ♥️
Diane
August 2, 2021 9:48 pmAbsolute prayers for Meg! So glad you found each other!
Bethy
August 4, 2021 7:03 pmThanks Diane! As always…you’re a doll. 😍