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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As a general rule, I think prejudice is bad - I am greatly opposed to sexism, racism, ableism (duh), homophobia, etc. Go ahead and think of any sort of negative preconceived notion someone could have against a group of people, and it's a good bet that I'm going to think that having that negative preconceived notion is bad, and I'm going to search for it in myself and do my best to destroy it so I can be a more loving, accepting, understanding person. Except for male gynecologists. For the last seven years, I've thought male gynecologists could all go fuck themselves. I've had pretty bad experiences with three different male gynecologists in my life, which were:
With these experiences in mind, when Dr. Lady-Strange referred me to see a male urogynecologist who she said she trusted and thought was the best, I was skeptical. My skepticism grew when I saw his name and picture. Dr. Norbert Owen Body*. Dr. N. O. Body. Dr. Nobody. In his picture, his eyes seemed to bore through my skin, my organs, my bones, and into my soul, and then out through my back so ultimately he was looking at the wall behind me. That is some Batman villain shit. I had a follow-up appointment with Saint Claudia (my primary care provider who I literally trust with my life) anyway, so before scheduling with Dr. Nobody, I went to talk with her. She confirmed what Dr. Lady-Strange said: that Dr. Nobody was an expert and very well-respected and well-liked by his patients, and the best urogynecologist for me to see in the area. ...fuck. Fine. I'll schedule the appointment. As I mentioned in my last post, I've been going to pelvic floor physical therapy, which has been helping, and I've been hoping that the root issue I'm facing is Pelvic Floor Dysfunction rather than Interstitial Cystitis. I don't want to have to restrict my diet, and also I feel like I'll have more power to treat Pelvic Floor Dysfunction than Interstitial Cystitis. Also, I'm frightened of catheters. All of this adds up to me walking into this appointment with a lot of anxiety. ...which was refreshingly, blessedly, unneeded. When Dr. Nobody walked into the room, I was relieved to see that his photo was very unflattering because he had regular human eyes. The first thing he said was something like, "I understand that you're a complicated case, so I've made sure to clear extra time on my schedule to talk with you." He then allowed me to tell him, in my own words, what my symptoms are and their impact on my life, and what treatments I've tried. He did a great job of not interrupting me except to ask important clarifying questions, and really seemed to believe me and take everything I said at face value. Best of all, he knew a lot about hypermobile Ehlers-Danlos Syndrome. And I mean A LOT. Not in the "I saw that you have hEDS on your chart so I googled it before I walked in here" way. Not even in the "I watched a short lecture on youtube from a medical conference on hEDS" way. In the "I have actually studied this and understand it on a deep level" way. His nurse later mentioned to me that he has a particular fondness for complicated patients and enjoys the challenge, and that she could tell he was excited to be the doctor treating me and would definitely be researching my case on his own time. What a gift. And, the most delightful gift of all, he believes that my hEDS is at the root of these issues and that I do have Pelvic Floor Dysfunction. He explained that though I do have a diagnosis of Interstitial Cystitis, that there are different subtypes, and the subtype I have is called the "Pelvic Floor/Myofascial Pain Phenotype", which walks hand in hand with Pelvic Floor Dysfunction. This subtype shows less bladder inflammation than the other subtypes, and usually treatments involving bladder instillations don't work well (so, no catheters!). Also, usually patients with this subtype don't have many diet sensitivities (so, there is a very low likelihood that I'll have to restrict my diet!). Treatment involves a lot of pelvic floor physical therapy and controlling pain effectively to help calm down overactive nerves and muscles. Well, I'm always down for physical therapy and for feeling less pain. Sign me up, Dr. Nobody. The tall thin doctor and the glamourous primary care provider shake hands, while the glamorous primary care provider says, "Welcome to the club, Dr. Nobody." They are standing near a sign which reads "Grace's Healthcare Team Bi-Monthly Mixer", under which several other healthcare providers are gathered and chatting. Ultimately, the conclusion I've drawn from this experience is that prejudices are bad. Maybe Dr. Nobody will even defy the odds and get "canonized" one of these days. The other conclusion is to ask medical professionals you already trust to give you recommendations whenever possible, so that weird men don't tell you that your vagina is as snug as a bug in a rug. *Dr. Norbert Owen Body (Dr. Nobody) is not his real name. Out of respect, I try to avoid identifying anyone too specifically on this blog. I do assure you, though, that Dr. Nobody's real name is incredibly Batman-villain-esque.
Normally this blog features (hopefully) humorous drawings, stories, and perspectives regarding my experiences living with a chronic illness. However, I'm breaking from tradition today with a call to action that I think has the potential to work very well to help slow the spread of coronavirus, and also to help lots of low-income people. I think slowing the spread of coronavirus will be beneficial to everyone, including people with disabilities, so I've decided that it's okay to break theme. I'm also going to try to keep this post more swear-word-free than usual, in the hopes that it (or at least my plan) get shared. Unless you've been living in a hole, I'm sure you've heard the recommendations that everyone who can should work from home and socially distance themselves in an attempt to slow the spread of the coronavirus. Crucially, these measures won't prevent everyone from getting the coronavirus - most of us are probably going to get it eventually. These measures are important because it will slow the rate of the virus's spread, and will allow hospitals and healthcare providers to not be overwhelmed. Following these measures will dramatically reduce the death toll (here's an article that, in my opinion, breaks this down in an easy-to-understand way). I've also seen a fair number of posts of social media that are addressing that directives to try to stay home and socially isolate are difficult/impossible for low-income people (here's an example), and that often only upper-class people can do things like this. These posts are making an important point - in the USA, there is no guaranteed paid time off for illness, and just about all workers in the service industry will not get paid and risk losing their jobs if they don't work when they're ill. Since so many people in America live paycheck-to-paycheck (according to a 2019 survey conducted by Charles Schwab, that number is 59%), this is terrifying. If these people contract coronavirus, they will either lose money they desperately need, or they will continue going to work and spread the virus. It's my opinion that now would be the time for government to step in and find a way to guarantee that employees who are sick or who are non-essential to a functioning society practice social distancing. However, we're not there yet - the quick passage of a paid sick leave bill was blocked because the funding for sick leave was expected to come from employers, and the Sen. Lamar Alexander (the senator who blocked the bill) believed that the government should fund this sick leave. So, while we're waiting for a better solution, what can everyday people like you and me do, other than the obvious things like wash our hands and socially distance ourselves as much as possible? Well, if you're reading this blog post, you probably have access to the internet. And if you have access to the internet and sometimes buy things, I've got an idea - I think we should vote with our dollars (and I don't mean by donating to Bernie Sanders's campaign, though please also do that). My plan is based on one surprising fact I learned in my five-ish years working for for-profit corporations: these corporations really care about your complaints and about what you write in those customer surveys. They care A LOT. I have been in meetings where the contents of one negative review are discussed by highly-paid professionals for over 45 minutes. I worked for one company where a customer service representative getting 4 star reviews instead of 5 star reviews was grounds for termination. They care that much, folks, which seems insane to me, but the fact is that our messages, sent directly to these corporations, are one of the best ways the corporations have to learn about how we choose to spend our money. And they want us to spend our money on their products and services. Oh, do they ever want that, so, so very muchly. So here's what I've been doing:
Here's a sample email I sent: Obviously me doing this by myself won't make much of a difference. But if we could get lots of people contacting lots of corporations, encouraging them to make the right choice, I think we could actually make a difference and make corporations realize that there is real economic value in giving their employees paid sick leave. Come with me on this magical *swear word redacted* journey. UPDATE March 14, 2020: I got a response from eShakti's CEO promising that all employees had paid sick leave! Success! If you need a new dress or skirt, I know who you should order it from!
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. |
Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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