In a choice that is perhaps a bit too on-the-nose for the current coronavirus pandemic, I recently read the book Blindness by José Saramago. In the story, there is a communicable epidemic of blindness (name drop!) that suddenly affects almost everyone in society. The government tries to control the epidemic by locking everyone who becomes blind in a quarantine and offers those in quarantine very little support - basically, they are waiting for them to die. Spoiler alert: it doesn't work, and society crumbles. Disclaimer: I'd like to formally recommend that you not actually read Blindness by José Saramago at the present time. Ionno - the back of the edition that I have says that it's a "powerful portrayal of man's worst appetites and weaknesses - and man's ultimately exhilarating spirit", but I found it pretty heavy on the "worst appetites and weaknesses" and pretty light on the "ultimately exhilarating spirit". In the current climate, out of respect for your probably-already-frayed nerves, I'd recommend something more like this (talk about exhilarating spirit!). While locked in quarantine, the building the newly-blind people are all being held in is eventually taken over by a group of also newly-blind thugs who steal all the food, murder, rape, and basically are the worst. The group of thugs have a superpower - they have a member of their group who did not suddenly go blind due to the mysterious communicable illness, but instead has been blind for years. From page 146 of the book: "So there was a normal blind person amongst these blind delinquents, a blind person just like all those people who were once referred to as being blind... They were certainly lucky, not only had they won a clerk in the raffle, they could also use him as a guide, a blind person with experience as a blind person is something else, he's worth his weight in gold." Obviously, this made me think of the 2012 superhero film "The Dark Knight Rises", starring Tom Hardy as the Batman villain Bane. In this beloved classic piece of cinema, as Batman tries and fails to do his "hide in the shadows" routine, Bane says, "you think darkness is your ally? You merely adopted the dark. I was born in it. Molded by it. I didn't see the light until I was already a man. By then, it was nothing to me but blinding. The shadows betray you because they belong to me." It's basically a mic drop moment, but actually it's a grab-Batman-by-the-throat-and-throw-him-to-the-ground moment. As I think about blindness as a superpower and Bane being born into darkness, I'm also seeing a lot of able-bodied folks on social media struggle with social distancing, because they are finding working from home challenging and finding themselves incredibly isolated and lonely for the people, places, and events they care about - this, of course, isn't addressing people who are struggling due to loss of work, who have an incredibly heavy weight of additional stressors piled upon them. I'm also seeing some people with disabilities being pissed that now that there's a pandemic, able-bodied people are suddenly being given work from home options and opportunities to socialize remotely that would've been life-changing for them. As you know if you've been following this blog, I've been having a pretty crap year. I haven't worked since the end of September due to my chronic pain and other symptoms, and for years now I've been cancelling and limiting what sorts of activities I can do because of my chronic illnesses. I, like other people with disabilities, am a little pissed at how quickly everyone is boarding the work-from-home-and-socialize-remotely train - it feels like, with a little bit of effort, all the able-bodied people could have been extending me these courtesies all along. Of course, I am also frightened - I don't want myself or the people I care about to get sick(er). Mostly though, I've been amazed by how little my life has changed due to the shelter-in-place order in effect in my state. My symptoms mean I hardly can go anywhere or see people anyways - the biggest change to my schedule is that now all my doctor's appointments are through telehealth. I've actually been selfishly delighted by the stay-at-home order. Bands have been live streaming awesome concerts I definitely couldn't have otherwise seen! Museums that I couldn't have otherwise visited are posting video tours! My husband is home with me all weekend instead of partying with his friends! My friends are calling me, and posting in baking groups with me, and remotely playing video games with me! And now I realize... I am the already-blind man. I am Bane. At the end of Blindness, everyone struck by the mysterious blindness-plague suddenly gets their vision back, and the blind people with experience as blind people go back to being regular blind people. At the end of The Dark Knight Rises, Bane is killed and Batman drinks wine with the leading lady in Italy. At the end of this pandemic, I imagine that for the most part, the rest of the world will go back to only socializing in ways that are, frankly, physically daunting and thinking people who work from home are lazy.
But maybe, at the end of this, you could go ahead and visit your friend who has a disability at their home. It's hard for them to leave, and (as you'll know by then) it gets lonely.
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I usually like to humble-brag that it is impossible for me to procrastinate. If I try to avoid doing something, the knowledge that I have to do it will weigh on me, heavier and heavier, until it is easier for me to just do the thing I don't want to do than it is to carry the weight of the guilt about not actually doing the thing I know I should do. I must have been working out my guilt-carrying muscles though, because you lovely folks are overdue for an update about the results of my surgery, and I have been procrastinating writing up this post like a goddamn guilt-powerlifting champion. I'm not 100% certain why I've been avoiding telling you about my surgery results. I've been telling myself that it's because I've been busy - which I have been! I've been going to lots of follow-up appointments, and physical therapy, and doing paperwork for my disability leave, and my husband and I are in the process buying a little house and moving. However, I've also had time to write a detailed account of my poopsplosion and to read the entire Harry Potter series (including the Cursed Child, which is not as bad as I remembered it being), so obviously I could've written this up if I was so inclined. And I didn't. The results of the surgery are as follows:
Instead, the ending I got was something along the lines of, "ok, well, the good news is your uterus looks SPIFFY, but also now you've got ANOTHER incurable chronic pain-causing syndrome and you're going to have to stop eating all your favorite foods like tea and chocolate and alcohol and spices and citrus for probably forever, and also I don't really treat that, so here's a referral to a different doctor, his next opening is in March." This was a less-than-satisfying ending, and I confess that I have been resisting it and still eating my citrus fruits, even though I generally advise people to trust their doctors and to trust scientific consensus. But see, here's the thing: I don't really have the right symptoms for interstitial cystitis. Yea, yea, I pee all the time like a goddamn racehorse, but I also drink a crapton (like 100-120 fluid oz) of liquid a day to keep from feeling dizzy due to POTS. My pelvic pain is located more at the sides of my pelvis, in and around my hip joints - not in my bladder like it is for typical interstitial cystitis. I don't have the burning pain while urinating, or any relief when my bladder is empty. Obviously, my bladder bled with the scope and hydrodistension, which indicates inflammation, but that inflammation could be a response to something else being wrong, rather than being the source of my pain. So I started to fall down that most inadvisable of rabbit-holes - self-diagnosing using the internet. Dr. Lady-Strange had previously remarked that my pelvic floor muscles seemed too tight and that I'd need pelvic floor physical therapy anyways, so I started there. I found something called Pelvic Floor Dysfunction, where the pelvic floor muscles are too tight and can't relax. This causes all sorts of symptoms that I have, such as chronic constipation, bladder inflammation, pelvic pain, hip pain, low back pain, pain with intercourse, and on and on. In fact, Dr. Kenneth Peters (Chair of Urology at Beaumont Hospital in Michigan) has even written this gem: “Only a fraction of patients with the key symptoms of IC/BPS – urinary frequency, urgency, and pelvic pain – have ulcers within the bladder. And many of the patients who are diagnosed with IC/BPS are found not to have bladder pathology as the name implies, but rather pelvic floor dysfunction.” And so, since I had to wait until March to see the new urogynecologist anyways, I decided to take matters into my own hands and find a pelvic floor physical therapist who could examine me and tell me what they thought, and start treating me if they agreed my pelvic floor seemed to be dysfunction-ing. I did me some intense internet searching, and found a group of pelvic floor physical therapists nearby who not only kick ass, but also accept my health insurance. On my first meeting with the pelvic floor physical therapist, the heavens opened and angels sang as the therapist said that pelvic floor dysfunction is common in people with Ehlers-Danlos Syndrome, and that she had seen many patients with exactly my symptoms, and that she was able to help them and that she was certain that she could help me. Thus, I have started going twice a week to the most awkward physical therapy that I can conceive of. And, like a molasses-slow miracle, I am doing a bit better. I have a little less pain, a little more energy, and a lot more hope.
We'll see what the urogynecologist has to say, of course - maybe he won't agree that pelvic floor dysfunction is at the root of so many of my issues. But I hope it is. I really want a satisfying end to this chapter. I also want to eat citrus fruits. I've been feeling very poorly as of late. It seems my endometriosis just keeps getting worse and worse, and I had an incredibly bad flare-within-a-flare over the last three days. Pain so bad that I'm having weird ideas that don't make a lot of sense, crying when nobody's looking, trying not to vomit, fevers, diarrhea - the whole shebang. When I get bad, I am a veritable crudités platter of symptoms. I don't have an entire post for you, but I'm trying to keep this blog going and post at regular intervals. Therefore, I'm sharing some art I did, which is weird for me, because I mostly consider myself shit at art. But it's all I've got to share, and I think it's less bad than my usual art, and anyone who has been reading this blog has already been exposed to my crap art, so here it goes. Above, you can see a truly mediocre painting of two prescription pill bottles, which instead of instructions, read: "But I am very poorly today & very stupid & I hate everybody & everything". This is an actual real quote that Charles Darwin actually really wrote in a letter. I love this quote - Charles Darwin struggled with health issues and was actually a bit of a recluse. The knowledge that Darwin could be angry and miserable and sick but still make such valuable contributions makes me feel a little less bad about how often I am angry and miserable and sick. Here is a less-mediocre-but-still-meh painting of a person wearing a little yellow raincoat rowing a small boat on a stormy sea. Underneath the person is the last two lines of the poem Invictus by William Ernest Henley: "I am the master of my fate, I am the captain of my soul." I've made a reference to this poem before on this blog - I love it and I use it as a sort of "pain mantra". I'm sure I'll devote an entire blog post to it someday.
Anyways, there you have it folks, some amateur art that is at least tangentially chronic illness-related. Enjoy it, and then go look at some better art. Might I recommend an art museum? They're these cool places where you can see art by people who are good at art, thoughtfully curated and displayed by people who understand and appreciate art. Also, the art is actually there, instead of just bad pictures of the art, which is what this blog primarily features. I know, I know, it sounds too good to be true, but I promise, art museums are as real as my chronic illnesses. Which is to say, very real. A few weeks ago, I was talking about some of my symptoms with St. Lisa, my therapist, and explained that there's not much I can do to fix them, so I have to tolerate and manage them as best I can. St. Lisa told me she thought that I was being very brave. I immediately resisted the compliment. Brave? I am not brave. "Brave" is the fireman who rushes into the flames to save a child. "Brave" is the protester fighting injustice and risking arrest, or worse. "Brave" is the knight riding into battle. I think of bravery as almost a precursor to martyrdom - bravery, in all of the stories I've read, means willing to risk yourself for another, or for the greater good. Maybe I used to be a little brave, from time to time. But now I've become so chronically ill and it takes everything I have just to get through a day. I have become too small to be brave. St. Lisa also asked me how often I am afraid. I responded that I was hardly ever afraid - that I just have to do what I am doing, and that I am doing my best. I said I'm sometimes afraid about how my mobility will be impacted when I'm older, but that's about it. ...but the more I consider it, the more I know that that isn't true. This past week, I had a consultation with a highly-specialized, super-fancy gynecologic surgeon. As far as I can tell, this woman is basically Dr. Strange in green scrubs and a sensible ponytail, going around and healing female reproductive organs like a goddamn sorceress. She was attentive, listening to my description of my symptoms closely. She was thorough when describing how she wants to proceed, and how she thinks I may have problems other than just endometriosis. She was confident, explaining that she believes she can effectively excise all my endometriosis lesions, and fix or manage the other issues I may have either surgically or with medications. She was ready to make my pelvic pain her bitch, and crush it under the heel of her very practical shoes. She is, in a word, awesome. ...and I am terrified. I do not want to go to the hospital on New Year's Eve for an intensive test where they'll put me under conscious sedation. I do not want to go to the follow-up appointment after the test with Dr. Lady-Strange to make a surgery plan. I do not want to have an IV put into me so they can put me under for surgery. I do not want to wake up after surgery bleeding, with three new incisions in my stomach and no idea where I am. I do not want to sit at home by myself during recovery, crying quietly, but trying to act sunshiney and for fuck's sake clean this place up just a little bit before Tallboy, my husband, comes home. I do not want to go to the post op appointment a week later and hear my new diagnoses. I do not want to go to pelvic floor physical therapy for a month or two afterwards. I do not want to go through all of this again, and have it all turn out to not have any impact on my symptoms at all, like after my last surgery. I've been lying awake in bed late into the night, curled up, frightened of what will happen to me. Everything seems so out of my control. Everything hurts. I am afraid. I am afraid of needles. I am afraid of pain. I am afraid that every new treatment I try won't work, or will give me horrible side effects, or will somehow damage me even worse, permanently. I am afraid that my friends and Tallboy will get sick of me and leave. I am afraid that the hormonal acne from the IUD I have to have to stop my endometriosis from growing more makes me ugly. I am afraid to leave the house, in case a horrible pain flare strikes. I am afraid to be put under, in case I never wake up. I am afraid to wake up, in case I have to live through another day of horrible pain. I want the ride to stop. I want to get off. I want to hide in my bed for the rest of my life, never setting my feet on the floor ever again. ...but every morning, I eventually put my feet on the floor, and try to make it through the day. Which has me thinking that St. Lisa is onto something. Because if bravery is doing what you have to, even when you're frightened, than maybe it doesn't matter that I'm not saving some innocent child, or saving the entire world. Maybe right now, my bravery can only save myself. Maybe, right now, saving myself is enough.
Content warning: Some mildly graphic descriptions and depictions of pain/violence/blood. I really dislike the "rate your pain on a scale of 1 to 10" question I get every time I encounter a medical professional. I understand the value it adds - the ability to quantify a subjective thing is a powerful tool for tracking improvement and for quickly assessing a feeling that can be difficult to communicate. But it ALWAYS throws me. I remember the first time I had the nerve to ask a medical assistant who told me to "rate my pain" to give me some examples to compare my numbers to. I was having sharp, intense pelvic pain (unidentified at the time, but years later diagnosed as endometriosis - using my current personal pain scale I was probably actually at a 7, and was doing poorly). She gave me a withering stare, as if I was purposely trying to make her day horrible, and said "10 is the most extreme pain you can imagine". This freaked me out! 10 is the WORST pain I can IMAGINE? I have a pretty active imagination, and I've felt some pretty intense pain in my life, so I said, "uh... this is a 3, I guess." Shortly thereafter, when the doctor came into the room, he said he thought I probably just had gas or constipation, and didn't even bother examining me. After all, what sort of hypochondriac comes to the doctor for abdominal pain that's only a 3 on the pain scale??? ...you see how this is not great. Another drawback of the pain scale is that it's not clear if it's a linear or logarithmic or exponential or some other type of curve - is the amount of pain between 1 and 2 different from the amount of pain between 9 and 10? Is a 6 on the pain scale twice as much pain as a 3? I don't know! Also, it's an inherently individualized, subjective measurement, and thus varies dramatically from person-to-person. I'm sure someone without chronic pain would rate their sprained ankle much higher than I do, because for them it's a serious problem, and for me it's a regular Tuesday. And there's no good way to standardize this, especially when the only benchmark given to patients is that "10 is the worst pain you can imagine". Finally, in the pain scale, you don't capture all of the beautiful descriptors of different types of pain that could exist. "It feels like knives covered in sandpaper are filleting my ovaries" turns into a simple 6. "Someone has unscrewed all of my joints, and then screwed them back on incorrectly" is a boring 4. Lying in the fetal position, with tears leaking out of your eyes, while you quietly whisper, "I just don't know how much longer I can bear this" is now a cold, hard 8. There's no art or depth or opportunity for empathy there. So, inspired by Hyperbole and a Half's better pain scale, I have decided to share the pain scale I have come up with for myself below. Bracing Grace's Highly Personalized Better Pain Scale 1 out of 10
2 out of 10
3 out of 10
4 out of 10
5 out of 10
6 out of 10
7 out of 10
8 out of 10
9 out of 10
10 out of 10
There you have it, folks - a better pain scale. I highly encourage you to create your own personal pain scale as well. If you do, please share it with me - I'd love to see some real pain scales that have actual meaning!
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Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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