Tags: chronic illness, I didn't work this hard just to get married, misdiagnosed the search for Dr House, misdiagnosis, Nika Beamon, single and sick
Copious Readers, as you can see from our previous post, we are currently exploring the topic of singles with chronic illness. As we have discussed before, unmarried people face a good deal of discrimination not only socially, but economically as well. Social security, health insurance, retirement savings plans–all of these are governed by laws that can very negatively impact singles. So we asked ourselves, what about unmarried people who have severe health problems? How would all the legal and financial discrimination affect them?
We would love guest posts on these (or other) topics from singles who are battling difficult, ongoing diseases or disabilities. But in the meantime, we are pleased to introduce you to an upcoming new memoir written by Nika Beamon, who is the author of I Didn’t Work This Hard Just to Get Married: Successful Single Black Women Speak Out and a chronic illness survivor herself. She is available for speaking engagements about her books and related topics and can be contacted at firstname.lastname@example.org. For more ways to follow the book, see the end of this post.
Misdiagnosed: The Search for Dr. House
WHO SHOULD READ THIS BOOK:
Anyone who has a chronic illness. (Para 1)
Anyone who has cared for someone with a chronic illness. (Para 2)
Anyone who has treated, or attempted to treat, someone with a chronic illness. (Para 3)
Anyone who has not had a chronic illness. (Para 4)
Anyone who influences health policy in the U.S. or other countries. (Para 5)
WHO SHOULD NOT READ THIS BOOK:
The faint of heart.
SUMMARY: Beamon writes raw. Her memoir chronicles her journey from a hospital-worthy hemorrage on a first date to scorching headaches to intestinal polyps to a 104 degree fever and an ongoing combination of all those symptoms, plus many many more. You the reader make the scary journey along with Beamon. Neither you nor she knows what’s wrong with her, or what freaky thing her body might do the next day. Not until the very end of the book.
1. Anyone who has had a chronic illness–even one that is fairly easily diagnosed and stabilized–has probably experienced at least one Doctor with Attitude who avoids eye contact and only half-answers your questions, especially if he or she can’t figure out what’s wrong with you. Nika meets many such health care professionals. Survivors of mysterious chronic illnesses will recognize themselves in her dogged search for someone, anyone, who can tell her what’s wrong.
2. Anyone who has cared for someone with a chronic illness will identify with Beamon’s boyfriend, Bryce. Beamon paints a stereotype-shattering picture of Bryce as both dedicated caregiver and thoughtless philanderer–at the same time. Bryce is a living metaphor for any long-term caregiver who (hopefully) loves or respects their “patient” but eventually starts to feel the strain of constant medical jargon, pills pills pills, a forlorn attitude by the sick person, and maybe, in extreme cases, the physical stress of helping the ill person move or medicate. This frustration doesn’t mean the caregiver has stopped caring about the sufferer. It just means the caregiver struggles with conflicting emotions, the confusing kind that probably encouraged (but was no excuse for) Bryce’s sleeping with other women (a habit he’d had even before her sickness). Yet he still provided invaluable support to Beamon. . . But what if she had been socially single, you ask? Well, her parents often stepped up to help as well. If she had not had a nuclear family, she would have had to rely on friends, and no matter how much her friends loved her, it might have been harder for Beamon to accept extreme amounts of help (the kind she needed) from them, because we’re just not conditioned to think of friendship that way. (Note I’m speaking my own opinion here, not referencing anything Beamon says in her book.)
3. Anyone who has ever treated, or tried to treat, someone with a chronic illness, especially a mystery chronic illness, will recognize themselves in at least one of the puzzled doctors Beamon seeks out for help–internal medicine practitioners, surgeons, gastroenterologists, neurologists, and more. They give her endoscopies, colonoscopies, pills pills pills, and more than one tube up her nose. Most of the doctors fall somewhere along the scale of mildly assholish to major prick, until. . . but I don’t want to spoil the story for you.
4. Anyone who has NOT had a chronic illness will learn from this book to feel a little less sorry for themselves when they have some dumb cold. Heck, I myself have a fairly serious chronic illness, but even I flip through the Misdiagnosed manuscript whenever I need a mental ladder out of one of my sludgy wells of self-pity.
5. Anyone who influences health care policy will–hopefully–be horrified at how much Beamon had to struggle, as detailed in all the paragraphs above. They will–hopefully–be horrified at how often she had to take her health into her own hands, seek out her own doctors, and research her own condition(s) and symptoms. Fortunately she was able to fight this battle off and on throughout her sickness–but many chronic illness survivors are not so lucky. They can’t work and must rely on disability, or they don’t have insurance, or—or they’re single, and these problems become amplified for them. Look at the crowded rooms of the startling public hospital in which Nika accidentally stays for several days; it is bare-bones, not super hygenic, and even possibly dangerous (for example, her wallet is temporarily stolen). This is where the unluckiest chronic illness victims end up–if they are poor or under-insured. Perhaps, given the legal and financial discrimination against singles, more unmarried people end up in substandard facilities than do coupled people. This study has not been done, but it should be.
Hopefully Beamon’s book will be one step towards opening the dialog about singles with chronic illness. Read it, people, and start talking! Thanks!
P.S. Keep up with Nika and Misdiagnosed here:
Photo credit: garret_33
Help! I Need Somebody! (A guest post) April 11, 2014Posted by Onely in Bad Onely Activities, Guest Bloggers, Guest Posts, Your Responses Requested!.
Tags: friends and family network, single and sick, single with chronic illness, support system, writing about chronic illness
1 comment so far
Copious Readers, welcome to another installment in our latest series about singles with chronic illness. Today we are pleased to introduce a guest post by our reader Bea, who ponders the meaning of “friends and family” and their role in the life of a single person with chronic illness.
Help! I need somebody!
Ever so often I stumble over this one expression that triggers kind of an allergic reaction in me. Like a mental allergy, even though I swear I can nearly feel it physically. It makes me upset and my mind starts to go in never ending circles, consisting of negative thoughts, hopeless thoughts à la „how is this ever gonna change?“. And I stumble over this expression all the time, in conversations, magazine articles, TV shows and…in self-help books, which is the last place where I wanna be confronted with depressing thoughts, seriously.
The expression I’m talking about here is this: „getting support from your family and friends“. Which is supposed to be something good in your life, something soothing, empowering, something to rely on. Especially when you are in a crisis, like losing your job or your home or an emotional crisis or getting sick. Like so sick that it changes your life, temporarily, or in case of a chronic illness, permanently. Which in itself is an enormous challenge, because a chronic illness alters your life in so many ways. It can be compared to a grieving process, accepting changes in your body, maybe restrictions in mobility, maybe constant exhaustion, maybe chronic pain. And if this illness is something totally new in your life, there’s a lot of things that need to be said good-bye to, things that you remember you were able to do before, but now can’t anymore. The good thing is, there’s also a lot of beautiful moments during and after the grieving process and the human psyche is definitely something magical, being able to adapt, to survive and build new things.
But one thing is for sure, dealing with a chronic illness all on your own is not advisable, the one thing you absolutely need to adapt to is the fact that you need help. And not only professional help from doctors or therapists etc., but in your personal life. Which is what brings me back to this expression that I don’t like, this “family and friends” thing. What I mostly don’t like about it is the subtle distinction between the two, the meaning behind the words. Because the conventional understanding of family is a biological – or at least legally adoptive – family, meaning your parents, grandparents, siblings, aunts and uncles etc. The only way to extend this kind of family – in a conventional understanding – is, if you fall in love with somebody, then marry, maybe have kids, and by this way you build a new “family branch”.
But what if you don’t have this? What if you don’t have a family, never had one or lost it or had to cut all contact out of self respect or the will to survive? And what if you don’t have a romantic relationship either, a so-called “life partner”, and your life works quite well without one? But that’s what the “friends” part in “family and friends” is for, isn’t it? Yes, that’s what I thought, too, and I’m a big advocate for families of choice, for people building close-knit ties without a romantic or biological connection behind it. The problem is I still feel quite alone with it most of the time, with this wish of changing the status quo. And I feel even more alone in moments when I am depending on somebody’s support.
Because way too often I experience that people secretly still have this hierarchy in their head, this clear distinction between family – and – friends. And yes, I do understand that people only have a certain amount of energy, that they can’t support everybody, that they have to take care of themselves, too, after all. But it bugs me that there still seems to be this huge self-evidence of who comes first and who second. It bugs me in many ways, if for example I see friends circling their life around each new “life-partner”, no matter for how little time they’ve known this person. And it bugs me, if people don’t even question the fact that they spend their vacation always with their “loved ones”. And it bugs me, of course, to then get pity from those people, because I don’t have this kind of life, not even asking if I want or need it, pressuring me into something that I actually don’t want for myself. Honestly, I love being on my own!
But what I do need is help and support, if I like it or not. And it will become more and more in the upcoming years, since my chronic illness will result in me sitting in a wheel chair at some point. And I admit that right now, I am still in the midst of my grieving process, and maybe I am too pessimistic and bitter and single-minded at this point in my life. But, of course, what’s behind this pessimism is an unfathomable amount of worries and fears. One of those fears is that my lifestyle of choice, being a single and being without my biological family, will not be compatible with this new situation. So I guess what I need the most right now is to know that there’s more people out there who have an allergic reaction to old conventions and who don’t give up working against the status quo.
Hi, Christina here again. If you are a single person with a chronic sickness, feel free to write to us at email@example.com to share your story. We are also looking for good ways to say “singles with chronic illness” with fewer syllables (“sick singles” already having been nixed as a possibility). Some of us brainstormed up Single and Surviving Sickness, Single and Sick Survivors, Single and Sick but Surviving–all of which condense to the handy acronym SaSS. But acronyms aren’t everything so we still need your help to come up with some non-tongue-twisting terminology.
Photo credit: kr8v
The Humor Code: A Book Review April 9, 2014Posted by Onely in book review, Reviews.
Tags: Joel Warner, Peter McGraw, Simon and Schuster, The Humor Code
1 comment so far
Copious Readers, welcome to the second installment in our new series Things That Don’t Have Much To Do With Being Single. Marketing managers at Simon and Schuster kindly provided us with a review copy of The Humor Code–A Global Search for What Makes Things Funny and asked that we write about it on Onely. At first glance, we thought, “Hey, this has nothing to do with singles’ rights!” But we really, really wanted a free book. So we said sure, we’d review it. Plus, we rationalized, single people like to laugh, right?
McGraw, Peter and Joel Warner. The Humor Code–A Global Search for What Makes Things Funny. Simon and Schuster. New York. 2014.
Two guys. 19 experiments. Five continents. 91,000 miles. And a book that will forever change the way you think about humor.
That’s the publisher’s summary. Here’s mine:
An intrepid sweater-vest-wearing university professor (Pete) looking for the grand unified theory of humor and a jaded journalist looking for a fluff story (Joel) quickly find themselves, if not over their heads, at least frighteningly up to their nostrils in a flood of humor, as they try to observe what makes people in different cultures laugh and why. A lot of the laughter they encounter is fun, some is dirty, some is mean, some is unintelligible, some is even dangerous. They make some assessments based on science, such as when they look at various gender bias studies (verdict: no, Adam Corrolla, men are not funnier than women). The authors also form theories based on interpersonal interaction, such as when they compare penis sizes with Japanese actors-slash-game show participants.
The Humor Code has not one, but two, storylines. First, there’s the travelogue, intertwined with expository prose analyzing the results of their adventures. Second, there’s Pete’s struggle to become a standup comic–or at least to develop a standup routine that, based on what he’s learned about humor, cannot fail to entertain. He appears on stage several times, each instance in a sweater vest. I won’t give away the end result, except to say that he gets better with practice.
The Humor Code is, appropriately and necessarily, funny. But the whole time I was reading I kept thinking, A book about what makes me laugh is making me laugh. A book about what makes me laugh is making me laugh. It was a very fractal feeling–not unpleasant, but rather like little meta fingers massaging my brain.
Our heroes go in search of Tanzanians who remember the contagious laughter outbreak, omuneepo. They examine headlines in the satirical newspaper The Onion published right after 9/11 to learn how laughter offsets tragedy (for example, “September 11 Hijackers Surprised to Find Themselves in Hell”). They meet with some of the Danish cartoonists who drew the famous and infamous cartoons of the prophet Muhammad that caused so much uproar around the world.
Speaking of which, here’s one for your next cocktail party: many of the cartoons didn’t even feature the prophet Muhammad; the vast majority of people protesting or defending them hadn’t even seen the drawings; and–this tidbit should be brought out after the canapes when people are well into their martinis and mojitos–the one cartoonist who did draw an actual prophet Muhammad with an actually offensive bomb in his turban was later in his home with a five-year-old daughter of a friend, when presumably a non-fan of his cartoon beat down the door with an ax and chased the cartoonist into his panic room–leaving the ax man alone with the little girl. She may or may not have drawn cartoons of Muhammad at some point in her Crayon career, but fortunately, the ax man hadn’t seen any and left her alone.
This book is full of cocktail party fodder, but it dives deeper than that too. Essentially, when it comes to humor, we humans are more united than divided.
Tags: FROZEN, singles, sisters
FROZEN is mostly just another stupid Disney Princess movie, with one tiny difference. As the film progresses it becomes apparent that our main heroine (a princess) can only be saved from her horrid fate (slowly turning to ice) by an act of True Love. We’re led to believe that this will come in the form of True Love’s Kiss by the bumbling but good-hearted sledgedriver named–something, forget. I’ll call him Burt.
However, in the climactic penultimate action scene, the True Love occurs when–SPOILER ALERT, FOR ALL OUR COPIOUS READERS WHO ARE ALSO DISNEY PRINCESS FANS–the princess selflessly saves her sister’s life. They hug and say “I love you!” Moreover, our princess heroine never even marries Burt. There are no couples riding–or sledging–off into the sunset. Instead, everybody in the kingdom gets together and ice skates. The last “couple” we see up close are the two sisters, skating together.
I grudgingly say “Good for Disney.” Grudgingly, because I loathe Disney, not only for their singlism and marriage mania, but for their sexism and racism. Just some random examples: All the princesses look the same–skinny, with ginormous eyes and tiny or nonexistent ears. They vary only according to hair color or style and–if we’re lucky–skin color. I barely need mention that their fates revolve around men. And in Aladdin, all the Arabs except for Aladdan have accents–meaning that all the bad guys sound like they are actually from the region where the story takes place, whereas Aladdin sounds like he grew up tipping cows in Indiana.
So I look at FROZEN as one small step in a journey of about ten million miles that Disney needs to walk in order to undo all the damage they’ve done to little minds over the years.
Tags: Kindle Direct Publishing, singles chronic illness, Spectre and the Sickness
1 comment so far
Copious Readers, welcome to our very first post that has nothing to do with being single! We have written over 400 posts so far and each and every one has directly pertained to some aspect of being single, either socially or legally (or both). Not today!
I wrote an all-true essay about ghosthunting and Lyme Disease called The Spectre and the Sickness, and I put it up on Kindle Direct Publishing. For only a dollar, you can find out how paranormal investigations and Lyme disease are very much alike. Please check it out. Any feedback is welcome.
Anyone can write something and put it on Kindle Direct Publishing, and I highly recommend you do. Trust me, it’s worth all the trouble of wordsmithing–if only because the Kindle program for making your own cover art is so damn fun.
So do it–write about social or legal discrimination against single people! Write about silly things non-single (or unenlightened singles) have said to you about your single status! Write about being single with a chronic illness (our current favorite topic here at Onely)!
Oops, I guess I have turned this post into one about marital status after all. Quick, undo undo: Write about kittens! Write about hot air balloons! Write about the crisis in Ukraine! Write about intestinal polyps! (A topic we, too, will address soon in an upcoming post–and don’t worry, by then we will be back to writing about singleness again.)
Seeking Sick Singles March 17, 2014Posted by Onely in Your Responses Requested!.
Tags: sick and single, singles blog, singles with chronic illness
We are doing this for two reasons: One, a friend of ours is considering a possible documentary about singles with chronic illness. Two, just because we at Onely are interested in how single people live with chronic illness, and we hope to talk to a range of people meeting these criteria. If you would like to be considered for the (still hypothetical) documentary, or would like to tell your story outside of the documentary, please contact us at firstname.lastname@example.org. (Or leave a comment below.)
We are also seeking another term than “sick singles” (too pathetic and, what’s more, a little pornish-sounding) or “singles with chronic illness” (too unwieldy). Terms that distill into catchy acronyms would be great.
Photo credit: Zoom_Artbrush
Singles (and Seduction?) on Sailboats February 25, 2014Posted by Onely in Food for Thought.
Tags: couples-only, Marital Status Discrimination, married-only, singles blog, singles clubs, singles on sailboats
It’s been a long time since our last post. Sorry if anyone missed us. (We hope someone missed us.) But never fear, even though we weren’t posting, we constantly had our eyes peeled for examples of marital status discrimination against singles. There are examples all over the news (thank you, Google feed), but we prefer to write about incidents we personally experienced. And our favorite kind of personal vignette is when the marital status discrimination is reversed–when married people experience a little bit of what singles live with every day. Mean but true.
You may or may not know my stance on singles’ groups. I personally find them kind of icky (I explained why here) but some people like them, so whatever. My friend Kisha is part of a beautifully-alliterated group, Singles on Sailboats (that also happens to have the unfortunate acronym SOS). But here’s the thing–Kisha is in a relationship. She’s not single.
So what’s she doing in a singles sailing club? Does this mean that Kisha is stepping out on her current man Dean and scanning the sailboats for a smarter, richer, tauter, funnier version of Dean?
First, because Dean owns the boat. You can be single as George Clooney, but you can’t be in SOS unless you have a boat (which is a dumb example, because of course George Clooney has a boat). Second, SOS allows couples like Kisha and Dean to join. Because they are not married.
Did you get that? Unmarried couples ok, married couples not ok. Perhaps SOS thinks that until a couple signs that piece of paper–until they become legally coupled as opposed to merely socially coupled–SOS should not deprive them of the chance that, while attending a SOS function, one of the unmarried pair might find, well, a smarter, richer, tauter, funnier version of Dean.
I would go to SOS myself and try to seduce some socially-but-not-legally coupled men, just to test this theory, except I don’t have a boat. Or any seduction experience or equipment.
I heard about the marital discrimination information straight from Kisha. “We’re trying to get them to allow married couples,” she said, and more power to her. Maybe if they add married couples they can become People on Sailboats, which sounds kind of stupid but at least they’d lose that unlucky SOS acronym.
(Full disclosure: The SOS website, technically you can be married in the club, but you must have joined as a single person. Which pretty much amounts to the same thing I’ve been yapping about above.)
All that said, here are the people that SOS does welcome unconditionally:
single members with all levels of sailing experience, from novice sailors to seasoned skippers. . . all single persons twenty-one years of age or older, regardless of race, color, creed, sex or national origins
Which just shows how discriminatory singlism (or, in this case, marriedism) is ingrained in our society. The club has no qualms about making policy based on marital status, but they go out of their way to advertise their lack of racism, colorism, creedism, sexism, or national originsism.
Until they fix their marital status discrimination, they cannot legitimately say, as they do on their website, “SOS is a sailing club, not a dating club.”
Copious Readers, can you think of better acronyms for this club, either reflecting their current status as a dating club, or their future status as a non-singlist, non-marriedist club for everyone?
Photo credit: Pixabay, Public Domain
Alabama State President–Victim of Singlism January 16, 2014Posted by Onely in Celebrities, Heteronormativity, Take action.
Tags: Alabama State, discriminatory housing, Gwendolyn Boyd, history of singlism, singles blog, singlism in school, valerie strauss
Even the unmarried president of Alabama State, Gwendolyn Boyd, accepts discrimination against single people, aka ‘singlism’. That shows how insidious singlism is in our society. Even a woman with a master’s in mechanical engineering from Yale buys into the myth that couples are better than singles. I must presume she is a highly intelligent, driven, open-minded woman. But then why, Copious Readers, would she end up accepting these terms from the university:
Her contract stipulated that she could not share her prime university housing with anyone except a husband.
And she didn’t fight back.
Check out this Washington Post article by Valerie Strauss to get the whole story, and to read about all Boyd’s *other* accomplishments that make her complacency in this matter even more startling. (more…)
Sillybacy: The Funnier Side of The No-Sex Oath January 10, 2014Posted by Onely in blog reviews, Everyday Happenings, We like. . ..
Tags: Catholic blog, Funny Celibacy, No Sex, Oath of Celibacy, single not looking for partner, singles blog
1 comment so far
For unmarried or uncoupled people who want sex but aren’t having any, this seems like quite the problem. But many people actually choose or swear to be celibate–maybe for a pre-determined period, maybe permanently, or maybe for an indeterminate amount of time after (ahem) a particularly bad first date, involving an argument about ice cream in a public parking lot and also (don’t ask) beansprouts.
But despite all these different kinds of celibacy, when most people hear “celibacy”, our knee-jerk reaction is,
Difficult. Extreme. Embarrassing to discuss, especially with the perpetrator.