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Book Release: A Voice For Singles With Chronic Illness August 27, 2014

Posted by Onely in book review, Reviews, Single with chronic illness, We like. . ..
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indexA while ago we here at Onely.org gave our dear Copious Readers a heads-up and review about Nika C. Beamon’s book MISDIAGNOSED: THE SEARCH FOR DR. HOUSE.

Now we wanted to announce that it’s available on Amazon.com as a paperback and Kindle book.  It’s also available on Smashwords and as a Nook Book.  Look for the paperback version on Barnes and Noble.com. Congratulations, Nika!

She also wrote a guest post on Psychology Today that ties into the book and talks about how to deal with being sick and single.

Copious Readers, I hope you’re not sick and that no one you love has a serious illness. But even if you are so lucky, check out Nika’s book anyway, just for educational value. You might find a whole new world of weirdness as you enter the seamy, stupid underbelly of the U.S. healthcare system.

–Christina

 

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Misdiagnosed: The Search for Dr. House (A Memoir) May 4, 2014

Posted by Onely in Bad Onely Activities, Honorary Onely Awards, Your Responses Requested!.
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Copious Regarrett33aders, 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 denali17@optonline.net. 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!

–Christina

P.S. Keep up with Nika and Misdiagnosed here:

Blog site: http://nikabeamon.com/
Social Media Sites: https://twitter.com/MCBeamon
https://www.facebook.com/#!/groups/70022821825/
http://www.linkedin.com/pub/nika-c-beamon/4/b02/621

Photo credit: garret_33

 

Help! I Need Somebody! (A guest post) April 11, 2014

Posted by Onely in Bad Onely Activities, Guest Bloggers, Guest Posts, Your Responses Requested!.
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2 comments

friends_forever_by_kr8v-d2eeyt4Copious 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.

–Bea

Hi, Christina here again. If you are a single person with a chronic sickness, feel free to write to us at onely@onely.org 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

Single and Sick: Nika Beamon Takes It On December 12, 2013

Posted by Onely in As If!, Food for Thought, Marital Status Discrimination.
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1 comment so far

Copious Readers,

We at Onely are trying to write more about the issues of being single and sick (health insurance inequalities being one of the main bullsh!t factors creating a more difficult situation for singles with chronic illnesses).

So we were thrilled to see that Bella dePaulo, longtime singles advocate and social scientist, posted a guest article by Nika Beamon about dating and living with a chronic immune disorder.

Read it here.

We also tweeted it, so we request you retweet so that we can get the dialog going!

–CC

 

Film Review: The Aviatrix November 20, 2008

Posted by Onely in As If!, film review, Reviews.
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OH no no no no no no no

I started this video with high hopes. A young woman with cancer draws herself as a body-armour-clad superhero and imagines fighting another woman in bright red body armour, who represents her cancer. Their fights, in a desert, rocky, otherworldly landscape, are interspersed with scenes from the woman’s life in her little suburban cottage. There is true-to-life tension with her mother, a true-to-life assholish doctor.

And then there’s the sensitive, funny lawn mowing guy. (more…)

Sick and Onely August 12, 2008

Posted by Onely in Food for Thought.
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I haven’t posted for a few days because I have been sick and miserable (thanks C for taking up the slack!), and when I emailed Christina to let her know that I wouldn’t be posting yesterday, she reminded me of the Sex and the City episode where Samantha is sick with the flu and, in C’s words, “bemoans not having anyone (man) to take care of her.” C also noted that the episode is “the ONLY time I ever saw Samantha bemoan not having a ‘relationship.'” In my current state of nastiness, I’m almost tempted to agree. (more…)

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