I recently watched a documentary on YouTube that was called Trust Me, I’m Sick. I seriously loved every second of said documentary; it accurately describes different folks living with assorted chronic health conditions. And one thing in this documentary that stood out to me, was how society doesn’t seem to grasp that when people have chronic health conditions, that that actually means that such people never get breaks from being sick people. This particular thing resonated with me not only because I have multiple debilitating chronic health conditions myself, but also because I find people telling me to ‘get well soon’ is dismissive of my truth. Because there is never going to be a day where I ‘get well’ because chronic illnesses are with folks for life. And personally, I’d like to help as many people understand these facts as I can: because the more this truth about me is understood, the better off my world, and other people’s worlds, will be.
But all that being said, the best those of us who live with any chronic illnesses can do for ourselves, is to not be afraid to speak out about exactly what we regularly deal with. But something else that I’d like to highlight about my chronic illnesses journey, is that I also want folks to understand, or to try to understand, the reason behind why I’m willingly deciding not to ever actively look for a romantic partner again: and that reason is because for anyone to date a sick person like me, is a hellish roller coaster. There are times when I have less chronic pain and other times when I’m in such severe pain that I can’t even put on a new change of clothes or do anything but sit around and play on my phone or with my Echo Dot. And most of those really hard times, are not just physically hard for me but they are emotionally difficult for me too. And so TBH, I’ve seen everyone I’ve dated from the time I was 18 to now, either not want to date me because who I am is just too much for them…or they don’t truly understand what it means to live with multiple chronic health conditions. And so even now, when I think about whether I’ll ever be in a romantic relationship again, the reason I don’t think I will, is because I’ve seen how being my partner hurts my partners deeply, once they see me in the ICU fighting for my life. Not many people want to date someone who has such severe health conditions as I do…and I totally get that. Yet at the same time, if I do ever date someone again, I’d want to make sure that they fully understand what it would mean for them to date me. I’d want them to know that I take care of myself the best that I can and that I don’t want to date someone who is my caretaker. I’d want to date someone who consciously chooses to be with me every day, and who I do the same with.
I recently listened to a Hidden Brain episode about how people can use our imaginations to create different worlds than the ones we may actually live in. Hidden Brain’s host, Shankar Vedantam, first shared a story about a lady who’d found comfort in Cher (a well-known star in the entertainment industry). But before I go any further, I need to talk about this woman’s background, in order for this entire story to make sense. And her background was that as a child, she didn’t know how to read; and she was so ashamed of this truth about herself, that she’d do everything she could during school, to not have to read in front of others. And eventually, one of the teachers at her school who was apparently great at discerning that there was an obvious reason that this kid was disappearing into the bathroom during reading time, got to know this woman who was a young girl at the time.
And then the way this woman told the story about how she’d come to feel confident in herself, was to say that this teacher getting to know her helped the girl learn how to shift things in her brain. More specifically, this teacher told the young girl that there are some people in the entertainment industry like Cher, who have Dyslexia, just as this girl does. And so instead of the girl going to the bathroom whenever it was time for her class to read aloud to each other, she’d stay in class with the other students, mostly because this other teacher at her school, normalized this girl’s reading difficulty, by helping the girl come to an understanding that every human being has struggles in life…even though our struggles are vastly different from one person to the next.
In the next few segments of this Hidden Brain episode, Shankar Vedantam talked with a woman who wanted to see if she could determine what makes people believe such different things from one another. And so one of the things that this woman did on this part of her life journey, was to essentially study folks who are religious and hear them talk about how they view God. And the consistent thing that people Shankar Vedantam interviewed said, was that they believe God is real, even though they can’t see him, nor can they hear him speak. But the thing that Shankar Vedantam correctly points out, is that as human beings, our ability to imagine things can really be vivid, if we train ourselves to be that way. And so people’s believing in God, is a part of their mind that’s telling them things that they think they don’t know…or that they think they can’t know. But really, science tells us in many different ways, that our minds are incredibly powerful things. And I’m definitely on the side of science, myself.
In another episode of Hidden Brain, Shankar Vedantam talks with a woman about how when we human beings are watching movies or shows of some kind, there are actually things that filmmakers and people who write films, movies, screen plays ETC, know about those of us who don’t write plots for a living. And so then Shankar Vedantam and this woman he’s talking to, discuss the movie the 6th Sense and how said movie can be tied in with this particular conversation they’re having with each other.
And one of the very first things that Shankar Vedantam and this woman highlight about this particular movie, is the fact that sometimes the characters don’t all have the same information as one another. But first, I want to give a little bit of background on the movie, so this whole thing is understood by folks. The background is that the little boy in this movie is seeing a psychiatrist because he, the boy, comes from a broken home. And so when the boy in the 6th Sense is talking to said psychiatrist, there comes a point where he (the boy) decides to open up to the doctor. And what the boy tells the psychiatrist, is that he (the boy) sees people who are dead. And it is because of this that the boy totally thinks that the psychiatrist he’s talking to is alive…just like he, the boy, is alive. But the psychiatrist is, in fact, very much dead. And the second thing that’s meant to play a trick on our minds as the viewers, is the fact that this little boy’s mom is sitting with the psychiatrist; and as the viewers, we think that the two of them have probably just had a tough conversation with one another. But in actuality, neither the mom nor the doctor, sees one another…because the mom is alive and the doctor is dead. And in yet another scene in this movie that’s meant to play tricks on the viewers, it’s a scene in which we see someone who’s been a patient of this psychiatrist, shoot the psychiatrist. And upon seeing this particular thing happen, we as the viewers think that because we see said psychiatrist later on in the movie, that that means that he’d actually healed from the earlier gunshot he’d gotten. And because the psychiatrist himself even thinks that he’s alive, that mind trick only helps fuel our brains to think that he is, indeed alive, too. But as Shankar Vedantam tells us in this segment of Hidden Brain, the 6th Sense constantly gives us misinformation about this psychiatrist, in a way. Because there are several scenes in the beginning of said movie that make us think that he’s alive, simply because we take note of the fact that he’s walking around…but again, movie makers want us as the viewers to think that we’re continually being given new information, rather than for us to think that the information that we’re given, may not all necessarily be the truth that we perceive it to be.
I recently listened to an episode of Love Someone with Delilah; the guest on this particular episode was Celine Dion. And TBH, I was quite impressed with the conversation that Delilah and Celine had with each other. First of all, I love both Delilah’s and Celine Dion’s voices; seriously, I even love listening to the commercials that Delilah records (whether that was from my days of actually listening to the radio or listening to Delilah’s podcast). But also, I loved this particular episode because I got to become familiar with who Celine is, in a way I hadn’t known before. And what I mean in saying that, is that while I like many of Celine’s songs, I had no idea about the kind of mom she is to her children. Actually, I take that back: I did watch a YouTube interview of her one time when her then-husband was dying from throat cancer and in that video, she talked openly about how she didn’t make the experience of having to feed her then-husband Rene using a feeding tube, traumatic for her twins who were much smaller children then they are now. In that interview, I remember Celine explaining that she’d educated all of her children on the fact that this particular health change in their father was to be expected, given his situation. And it really moved me to hear her talk about this tough situation that way because it showed that she was normalizing this situation, even though she and her children were pretty scared of it.
Another thing that really affected me in a huge way about this latest episode of Delilah’s podcast, was the part of Delilah’s and Celine Dion’s conversation where the two of them discussed their children and how each of them parents their children. And Celine was talking about how her son who’s a young adult has a girlfriend and how she (Celine Dion) feels that it’s necessary for her son and his girlfriend to explore what it means to be in a romantic relationship with someone. And then Delilah started talking about how she doesn’t let her kids date anyone, when they’re teenagers…and that outlook of Delilah’s was similar to how it was for me, living with my bio mom. And I think that such an outlook is shitty for anyone to have because no one can save their children from things like having sex, knowing about sex or being in romantic relationships with people. And so when I see people display ignorant views like that one that Delilah has, that makes me livid!! Because putting such a strong hold on children in that way, almost guarantees for you as their parent, that they’ll do whatever it was that you’d always advised them not to do. And that particular reaction of theirs would be, and is, great in my opinion; because they are human just like you are…and they want to learn and grow, just like you do. So letting them explore things like their sexuality, means that you’re fully supportive of them forming their individuality. And I love that Celine Dion is open-minded to this kinda thing. I think how she’s raising her children will help how they see themselves in the world as human beings who can be whoever they want to be…but also, that they see themselves as human beings who know that it’s healthy to have romantic relationships with people which of course includes being sexually active if they choose to be. Because TBH, I hate the chokehold that people like Delilah and my bio mom, tried desperately to constantly keep on their kids. It’s damaging, in sooooo many ways.
Yesterday I wrote the following thread on Twitter which reads:
#YouMightBeAblestIf like a new housemate of mine who I’d met last night, you’d be amazed that I, as a blind person, could put a fucking spoon to my fucking mouth to feed myself. But that’s just stupidity. I’m blind, not incapable of such a task. Just cuz my fucking eyes don’t…work the way yours do, doesn’t mean that I cannot function. Of course I have to do many things differently cuz I can’t use my eyes the way many folks can and do use theirs…but your eyesight doesn’t make you a more valuable person than me. And if you think that it does…then I suggest you seek out blind people like myself to correct your misconceptions about us. If you’d rather continue to be ablest then I have no problem saying that you are part of what makes life a zillion times harder for blind/other disabled folks.
I wrote the following comment on FB, in response to a topic someone posted in a group called Adult for Ladies 18+). This person was talking about how they’re currently dating someone that they aren’t actually interested in. And in fact they’re interested in being with someone else. What I wrote in response to this person reads:
Being true to who you are, means that people’s feelings will get hurt from time-to-time. There is no way you can ever avoid that; but it is important that we as individuals, live our truths, whatever those truths happen to be.
As for how to go about breaking up with the person you’re currently with, how you break up with them is totally up to you. I mean, if you aren’t good at having tough conversations with folks face-to-face, then maybe writing a letter about this and then giving it to the person would be best.
I wrote the following comment in response to an FB friend’s status update about losing a loved one. My comment reads:
Grief is a lifelong process and something that will never go away, even though our society tries to tell us that it does and should. It will not get easier either; at least, that’s been my experience for as long as I’ve grieved for loved ones. Hugs!!
In the Blind Bitching FB group, someone created a thread about how said group is going to run nowadays, being that there are now moderators from within the group, who are policing people’s every move. And on this topic, someone brought up that they keep people they call friends in their lives because they think that it will be scarier to have no friends, than it is to have people who call themselves ‘friend’ but are not, in fact, your friend. So that being said, the response I wrote to this particular comment reads:
It’s better to have no friends, or just a couple of friends who treat you well, then having shitty people in your life who call themselves friends…but are not friends at all. You deserve better than that.
In an FB group I’m a member of called Disability Wisdom Discussion Group, I wrote the following response to someone who needed support for what they are going through. My response to them reads:
You are deserving of whatever you feel you need, including using a wheelchair some of the time. In addition to being blind, I also have cerebral palsy and a whole host of other severe health conditions; I use a wheelchair mostly, along with a white cane. It took me lots of time to work through the shame that is probably similar to what you are currently experiencing. But I’m just a message away, if you need/want a friend, validation or anything else. I understand this is difficult to realize and accept that our bodies change…but you are not alone. I’m 32 now, and was just a bit younger than you currently are, when my body started changing drastically. Hugs.
In the FB childfree group I’m in called Childfree by Choice, someone made a topic talking about how they think that people who have kids later in life, claiming they needed to have children, are rediculous. My response to that thread reads:
I will never get tired of my life being about me; I’m 32 years old and literally until two years ago, I let both sides of my biological family abuse me constantly, physically and verbally. And then I realized that the greatest gift that I could actually give myself, would be to cut those people off and essentially go off the grid from them, blocking them on all forms of social media and changing my number. I have been able to find happiness, true happiness, every day since then…and that will never change.
On Saturday morning I wrote the following post on my FB which reads:
OK, so while I made a post the other day about how great CBD oil is, it doesn’t do shit for chronic migraines. So even though I’ve had CBD oil for the past few days that lessens my chronic arthritic pain, I have migraines every day. Because my prescription medication is literally what makes me not have daily migraines. My caretaker was sweet enough to physically go to my doctor’s office today and tell them why I missed my appointment: because I’ve been dealing with the loss of a loved one…and they were at least kind enough to make me an appointment for later this evening. It’s gonna be a long day…but the current thought that’s repeatedly going through my brain, is “I wish that my body didn’t require me to have to take a daily prescription to stay alive and be functional.” But it does require exactly that…and so I need to always go to my primary care doctor appointments, no matter what. I know that for sure now, and I’m logging this here so that I can remind myself of this…or so that one of you lovlies can help remind me if need be…
I wrote another update about this health scare situation of mine on FB which reads:
So I know it’ll be scary to read this health update from me but I am really sick. My doctors always warned me that I should never not have this medication because it would make me deathly ill. Well, deathly ill has been my last few days. I made it to the doctor vomiting profusely and so in addition to my typical prescription, they prescribe me Zofran so I can get better ASAP. I can’t even drink water…and I seriously, want, to, die. If you could please send good thoughts, prayers (whatever you can), I need them really bad. This is awful 😩 😭
I wrote another FB update on this situation which reads:
My organs are shutting down…and I’m fully alert. I lost complete control of my bladder last night and all I can do is sit up and throw up. It’s getting hard for me to speak…but my mind is working and technology AKA my Bluetooth keyboard, is my savior. I still have to wait hours for CVS to open and I’m just getting worse and worse. School starts tomorrow and well, I don’t see myself being able to make it…
Sunday I wrote yet another FB update about this scary health situation of mine; what I wrote reads:
Went to the hospital today and they gave me Zofran, food and water. I was able to keep everything down. I am very much alive and on the mend. I love you all and appreciate your concern. I will never let this happen to myself again. My doctor did literally tell me last night that I was dying, so I had no intention of playing around with this. I won’t make it to school tomorrow but hopefully, I’ll be able to start Wednesday. I just need to rest.
Yesterday mornning I wrote yet another FB update about this recent scary situation which reads:
Sleep, I feel like I hadn’t had you in years, how truly wonderful you are!! And so now that I’m on the mend, I have some reflections about that scary situation I unknowingly put myself through. First, I’m no longer gonna allow myself to feel defective because I’m someone who has severe health issues which require me to visit all of my doctors on a regular basis; I’m no longer gonna allow myself to think unhelpful thoughts like ‘other folks rarely go to the doctor so I should be able to be just like them, in that way. Because the thing is, I’ve been socialized to feel these things because as a woman, I’ve not been taken seriously by medical professionals, when I lived in Texas; like, in 2016 when I was back and forth between hospitals for nearly that entire year, the medical professionals would always tell me that they thought I was faking shit. Well, October 27, 2016 was when some test results told us that I tested positive for Systemic Scleroderma. That was the day before my birthday that year…and I was relieved that they’d found something. But TBH, I just knew that they would because the assorted symptoms I was experiencing (tremors in my hands, similarly to what people who have Parkinson’s Disease have, I had this weird disturbing cough that was unexplainable, I had weird speech difficulty, I didn’t have control of my bladder, nor could I feel my body when I had to poop) and these were just a few things that were not right with me, at the time. And the doctors didn’t take me seriously then, until I’d told them that I couldn’t feel anything that was going on with my rectum.
But that being said, this particular experience was not the only time I’d ever not been believed by medical professionals. And so that is why, when I had this most recent experience due to being off of my medication, I held the bowl I’d been throwing up in when I was at the doctor’s office…because I wanted the doctor to see right away that I was in some serious shit. And thankfully she did; she even told my caretaker and I that I was literally dying. But I was grateful that I was able to think about how I could ensure that this situation was resolved…because I knew that if I could do that, then the doctor wouldn’t have to waste time trying to figure out how sick I was, nor would she have to waste time possibly badgering me about why I’d let myself get into this predicament in the first place. Because I’d told her exactly what’s been happening in my life lately, to cause me to neglect my own self-care. I also made sure that she’d put a note about this in my chart so that the person I usually see would know the scoop as well. Because that’s the thing: I’m usually on the ball when it comes to taking care of myself; and so it’s important to me that my medical team always knows what I’m going through…because keeping them up-to-date on my life is the only way that they can give me the best possible care.
And so all this being said, I’m no longer gonna try to convince myself that I can function alone, without constant medical care. I’m gonna start to believe with my whole heart that I always know my body best…because I don’t think I fully trusted that my medical team would listen to me this time, due to my numerous past shitty experiences with medical professionals. I’m gonna make sure I tell people I love them because I do, whether we’ve known each other for months, days or years. I’m gonna trust that if I’m meant to be in a romantic relationship again someday, that that partner will love and accept me, the full package that is me…and I’m gonna trust that she and I will both take care of ourselves and each other not out of a sense of obligation, but because that’s what people who love each other, do. I’m gonna continue to trust that my friends will literally or figuratively kick my ass, like many of you did on social media yesterday, if need be. And by the way, I totally regretted posting that honest update about exactly what I was going through…but I only regretted it because my thoughts were all dark. Because on one hand, I didn’t care of I died. But on the other hand, there was a small part of me that wanted to live. But that’s what being without this medication does to me: it makes me Eeyore’s twin. Thanks for being my friends and for loving me. I love each and every single one of you with all of my heart 🤗 💖 🏳️🌈 ❤️ 😇 ❣️ 🌈 ✨