Ephemeral
Fair warning: This post has more profanity than usual. If that makes you uncomfortable, I'd gently remind you that this blog is not (dramatic pause) ah-f*cking for you! (Oooooo, damnit!)
Ah, social media. My generation's bastard child; a double edged sword; a false reality.
It gives and it takes without regard for the emotional capacity, the present day's to-do list, the general life plan, etc. of its consumer. At the end of the day, Instagram, Twitter, Facebook; they are businesses. They are the products of a waining cultural attention span (and yeah, I recognize this is far from an original thought - which, in itself, seems to be becoming increasingly more difficult to have). They are focused on revenue as much as they are on flooding the product marketplace. But they knows content and they knows it good.
Social media sometimes feel like endlessly scrolling through pixelated broadcasts of someone else's brief joy. It is quick, easy, and simple to consume. A perfect mismatch of energies. My confusion is existential, and the subject's enjoyment is fleeting. It satiates the eyes without soaking the soul and I find I am still dry each time I close my screen.
"There's nothing new under the sun" is perhaps no more evident in our current climate than it is on social media. Now, keeping in mind that I literally work for the internet, by 10 AM, without fail, every one of my peer cohort has seen *that* video, read *the* article, or retweeted *his/her* photo. Social media is so often easy-to-consume, relatable, and even goes so far as to unearth the common bits of us only previously thought to be unique. It is nearly all appropriation; a giant red pen over originality. But, most of the time, we don't care; it is just such a relief to not be alone.
I have met more young people with chronic illness, more transplant recipients, more women age 24 who had their heart (or, in some cases, also their lungs) transplanted (AT Stanford, no less) solely because of social media. I remember begging my clinic-assigned Social Worker to pair me with someone who understood. I just needed someone else to get it. Weeks went by before I was matched. Requests for more; more young women with heart transplants (no), more young people who have had transplants (lol, nope), ok literally anyone who is under 75 and has had a damn organ replaced for Pete's sake (nice try), went largely unattended.
Until one day when I discovered the true wonders of the hashtag. Thus began the search for everything. Every corner of medicine or illness or healing was suddenly between thumb and index. Too much to take in in one sitting (and, sometimes, admittedly too much to handle altogether). All fueled by the devil's supplication: the algorithm. Talk about a double-edged sword. The more I searched, the more I found. The more I searched, the more my Instagram Explore page overflowed with videos of stitching lacerated ankles, boomerangs of G/J tube infections, and pictures of kids with cancer.
But I wouldn't trade it.
Here I have found the pinnacles of humanity side-by-side with the nadirs of life. There is great camaraderie in the chronic illness community. Young adults who would otherwise be labeled "housebound" "too ill to participate" or just "sick" find agency, validation, and true empathy online. Furthermore, the eat-without-chewing nature of the fleeting images and 6 second videos are just palatable enough that those outside the medical bubble have found a way to see inside for, quite often, the very first time.
And yet, though another spoonie's comments on my Instastory serve to connect and corroborate my experience, I still scroll through, never satisfied. Sometimes I stop searching at the end of the day, not because I grew less interested, but because my eyes are so arid from not blinking that it hurts to close them.
It hurts to know that, no matter how many people I find out there, no one will truly know what it was like just for me. It hurts to feel isolated in your own community.
And then it hurts to watch someone struggle to overcome their pain. It aches to watch someone dying through their profile. It wrenches your heart out to see someone disappear altogether.
I think back to who I was before I became a member of this club no one wishes to join. I thought I would be someone different. I thought I would spend my days as if they were my last. I thought I would be doing something that mattered. I don't desire to be a chronic illness warrior and I certainly don't want to be a martyr. I have mixed feelings about being inspiration porn. Though, at the end of the day, it doesn't really matter who I end up being, as long as I know who that is.
I thought I would no longer sweat the small stuff. I scoffed at the idea that I would still be too afraid to approach anyone remotely out of my league. I thought I would be more assertive, less accommodating, and so, so grateful. I thought a lot of things.
But aye, there's the rub, because I still do. I still stew and overthink, snowball into what I did wrong to let this less-than-ideal outcome materialize. I still agonize over the thought of confrontation; particularly when it engages those I care about. I become wound up in the pace of Silicon Valley yo-pro push; the "launch, and iterate!"; the innovate; the drive.
Then I think of the woman whose life was cruelly swept away a week before reaching a year with her new lungs. I remember the girl who is entirely dependent on IV fluids and TPN so she that does not starve. And then deep, down beneath my stomach, in the core of me, I ache for the little boy who was lost to DIPG.
And for them, if not for me: I affirm that I am, now, someone different.
I cared before, but not like this. I fought before, but not like this. I was hurt, but never so deeply. I was betrayed, but never so consequentially. I keep asking, "When? When will I love something (someone?) like I have never loved before?"
I think what I am discovering is that this "second chance"*everyone talks about in no way automatically ascribes new meaning to your life. In fact, I could argue that it doesn't even provide perspective. It provides weight. It provides duration. It both lightens and heavies the load; it both shortens and lengthens time. The meaning or perspective that you then develop is a product of your own interpretation.
*TANGENT ALERT: I just despise that phrase. "Second chance" implies I personally did something that warranted my "losing" the first one. I inherited this disease. It's not my fucking fault. Don't ask me what I am doing with my "new chance at life." That completely negates the struggle I fought to keep the one life I still have. Furthermore, it implies that my "first chance" was not worthy enough; that it didn't deserve to continue. So just stop it. I simply stayed alive. You do not have the right to valuate my experience. kthx rant over.
In the interest of FOAM and empathy (#FOAMempathy? can we trend this?), I'm sharing the voices of some of the most powerful young advocates I've met and discovered through social media. This is by NO means a comprehensive list (though I hope to create one some day) and I have undoubtedly left out people whom I know and love, but I hope that it gives you an insight into how both how broad and how close this community is:
Charlie Blotner: @CBlotner_ Advocate for Trans Health, Brain Tumor Social Media (#btsm), Living with Brain Cancer, co-founder of #btsm, Stanford Medicine X ePatient Student Advisor
Liz Salmi: @TheLizArmy Living with Brain Cancer, TEDMED FrontLine Scholar, co-founder of #btsm, Stanford Medicine X ePatient
Britt Johnson: @thehurtblogger Advocate for Rheumatoid Arthritis, Bechet's Disease. Stanford Medicine X ePatient
Caleigh Sarah Haber: @fighttobreathe Double-lung Transplant, Cystic Fibrosis, DIOS, Tubie, CF/Steroid-Induced Diabetes
@Youngpeople_chronicillnesses: Instagram for young people which hosts "spoonie spotlights"
Aubrey Ahna: @aubreys.lyme.journey Lyme Disease, Bartonella, Babesia, POTS, Epilepsy, Gastroparesis. Instagramer and YouTuber
Ryan Prior: @r_prior Chronic Fatigue Syndrome, produced documentary call "The Forgotten Plague"
Kathleen Sheffer: www.rosecoloredmask.wordpress.com Pulmonary Hypertension, Double-lung and heart en bloc transplant
Anna Legassie: @sixhips Systemic Juvenile Rheumatoid Arthritis, Six hip replacement surgeries, Athlete, Pericarditis
Turia Pitt: @turiapitt Burn survivor, Skin Transplant, IronMan Triathelte
Anthony Carbajal: @carbajalphoto ALS (Lou Gehrig's disease), Street photographer, Stanford Medicine X ePatient Artist in Residence 2017
Andrea Downing: @bravebosom, BRCA Advocate, Breast Cancer Previvor, Mastectomy Survivor, Stanford Medicine X ePatient Advisor
Kristen Terlizzi: @KristenTerlizzi Placenta Accreta Educator, Cesarean Mom
Jessica Melore: @jessicamelore Heart Transplant Recipient, Amputee, LVAD Survivor, 3x Cancer Survivor (PTLD, Endometrial), Disability Advocate
Molly Atwater: @MollyOllyOstomy Chronic constipation caused by functional and anatomical abnormalities of the colon, Ostomy
P.S. Do you have a chronic illness or acute condition and are in need of support/role models/some one who gets it and your condition is not listed above? DM me @leilanirgraham (that's my name on all of the social medias) and I will absolutely find someone for you.
Currently Listening To: "Briony" from Atonement by Dario Marianelli
How on God's Green Earth had I never seen Atonement? This film so quintessentially epitomizes "Mickey Mousing" it should be a crime. Only, it shouldn't because, as we learn in Atonement, crime really does not pay in 1940s warn-torn England.
In short, the film captures the star-crossed romance of a Cambridge-educated aristocrat Cecilia (Keira Knightley) and her Cambridge-educated (but considerably class-divided) peer Robbie (James McAvoy #swoon), the son of the house's groundsman. The trouble begins when younger sister Briony (Saoirse Ronan) is mistakenly handed the wrong love note to deliver from Robbie to sister Cecilia. Unfortunately this note was accidentally swapped; from an acquiescing* apology to a rather see-you-next-tuesday-filled note regarding an adult sleepover and trip to the [Doheny] bookstacks (how many innuendos can she fit into one sentence?). Truthfully, I can't take full credit for this string of euphemisms as Marianelli himself slyly titles this sequence: "Cee, You and Tea."
I'll leave it to you to find it yourself, oh user-of-the-internet, but the library scene might be one of the most eloquently filmed sex scenes I have ever seen. And I watch Outlander.
Segway-ing back onto topic, as we collectively draw our heads out of the gutter, let us move along to why this opening is incredible. It begins in situ with the typing of a typewriter. Note that we can tell this is Briony's typing from the visuals, but we also know that this is the beginning of the story because the number of strokes before the "enter" key are only long enough for a few words (a title or an ending). Though we see that Briony has finished her play in this opening sequence, I believe we as the audience are meant to rather see this as both the beginning and the end. I would, therefore, instead offer to say that the approximate number of key strokes equate rather closely to the following:
ATONEMENT by Briony Tallis
It is during the second line of text that the piano begins to come in, syncopated both against itself and the typewriter, so that it is as if three competing storylines are present (Briony's, Cecelia's and Robbie's). Shortly after this the strings takeover and the piano becomes more hurried, less syncopated, as undertones of oboe and cello hover just below the surface, still pulsing out of time to the flurry of the typewriter.
Then, all at once, the beginning of a resolution in unison halts the progression to a stop. We hear a great swell; violins, violas, the typewriter on beat this time, and then (orchestral) accent (typewriter) "Ding" (orchestral) resolving minor chord, (typewriter) "Enter" key, and then...nothing. The frustratingly powerful finish of an unresolved chord is foretelling as all get out. You should see this film.
*if you got the Pirates reference, then you truly are a member of the elite squad. Good on you.
As always, the piece on its own and then in the context of the film, please.
"Briony"
[youtube https://www.youtube.com/watch?v=InMP9mb3N_I?rel=0&showinfo=0&w=560&h=315]
"Opening of Atonement"
[youtube https://www.youtube.com/watch?v=dMvRPs_mWD4?rel=0&showinfo=0&w=560&h=315]