Humans can withstand almost anything, but not alone.
I am writing this, monitored by my care worker, who had to save me from asphyxiating because my diaphragm won't work properly. I lost an hour in a haze of pain, moved from position to position with my shoulders and ribs straining as I tried to suck down air like a thick shake through a narrow straw. We, the PWD's, caregivers and friends get used to things that others think are unbearable. Indeed, maybe things we once thought were unbearable. But as hard as these things are to endure, for me, the hardest is to endure them alone.
I did write a great piece yesterday on the idea of how exactly are we to 'fight' that which is part of us (and not in our control either). You can read that essay, called 'Fight or Resist' on my own blog, but instead I'm going to go back to one of the purposes of Ouch: the connection we gain in realizing that we aren't alone. Alone in our fear, in our frustration with paperwork, and assessments and accessibility also the joy of doing something like cooking when you might only have a few “good” hours a day…or week. And in the interest of that, I am going to do two things, first is introduce some different perspectives. Second is to talk about a series of books I want you to get, because if you are reading this post, then you ARE one of the main characters and heroes of this series (and when is the last time you have felt that?).
Different Perspectives: Here are some blogs that cover medical and disability conditions, which I am sure some (many!) of you will find a connection with:
The Seated View: a woman and artist who became a wheelchair user at 16 talks about life and living from the seated view. I highly recommend her post about her growing into her sexuality as a disabled woman, without role models.
Waiting for Rain: a female disabled veteran of the US army with post-traumatic fibromyalgia with fatigue. I recommend her post about the doctor who says the reason she has no pain relief is that she is not taking her pain medication “with the right attitude”.
no day but today: is the blog of a man who after years has finally been diagnosed and is being treated for Lyme Disease, here is his post on getting diagnosed and the drug cycle they are trying, you'll have to read the rest of the story to find out how it is going.
Badgerbag: The pic says it all! I'm having a blog crush of her AND her writing: she also has a rather full bag of disabilities. Her post ranting on her mis-diagnosis specifically and the problem which so many now unfortunately experience, is not to be missed. Personally, it has only been 10 months and the “oops, nope, you don't have that” has already happened to me twice.
Marla Baltes: a woman blogs about raising her daughter who not only has Autism Spectrum Disorder but also a rare Chromosome 6 disorder. After a post of her daughter's transition anxiety in a social setting, she shares a journal entry in a post showing the change from six years ago (it is heart wrenching stuff). If you just want an understanding of one type of ASD, I can think of no better blogger than Marla, as her photojournalism, like this post showing her daughter reacting to a Mariachi Band is more vivid than a 1000 words.
Second part: I beg you, go get the series of books call Translucent. Why? Because this series is about a person with a disability and the people around them as they try to fit in, try to find their place in society, fulfill and work towards their dreams, have problems and setbacks but lean on each other and get back up to try again. I know that is something I can relate to, and I think you can too. Yes, it is a English language manga (Japanese illustrated book) but my partner who dislikes manga, read and loved both of them, partially because she could use them to explain to me why she stays with me, and WANTS to. So here are the links to Book 1 and Book 2 at the US Amazon site; and Book 1 and Book 2 at the UK site (or you MAY find them at a nearby bookstore).
Translucent is about an eighth grade girl named Shiroyama and a guy who likes her named Tadami. Shiroyama has this new chronic disease called translucent syndrome which makes parts of her (sometimes all of her) literally translucent (or invisible). Through book 1 and book 2 she meets adults who have the same condition and by facing and working through situations and through their advice she struggles to find out what a 'normal' life is like with a chronic condition.
So why I am recommending this series so strongly? Because in these books, the disease 'translucent syndrome' is really a metaphor for any chronic condition and narrated from both her view and the view those around her. The series is able to address not just what it is like both physically and mentally to have a chronic condition in today's society, but also the viewpoint of the caregiver, the friend, and the cost to THEM of seeing the person they care about hurt by society (as well as the rewards they get FROM that relationship).
Shiroyama meets Keiko, an older woman who has advanced stages of the syndrome, who tells her not to delude herself, that she must learn to be independent because if she has a partner, she won't be able to support them as much as she needs support (Keiko's ex-boyfriend feels differently and is constantly trying to convince Keiko otherwise). So now Shiroyama fights with the 'disability guilts' (‘I'll just be a burden') as well as the brutal discrimination from her teachers ("we can't include you . . . what if you become . . . you know . . .").
The second book has Tadami and Shiroyama go on a date and includes some kids staring at Shiroyama's disability and the start of public comments. Tadami steps in and turns things around, showing how he views her and how isn't the syndrome cool! But secretly he has been reading everything he can and as defacto caregiver is becoming worried and obsessed not only about his own helplessness at times but at not knowing enough to make sure he can help Shiroyama (strike any chords with caregivers out there?).
The books regularly include the way that medical treatment, examinations and the entire medical system which has become part of Shiroyama's life. In book two it includes an incident of physician discrimination: where he either doesn't believe her and/or isn't comfortable treating her. It is the inclusion of incidents like this, the REAL LIFE aspect of chronic conditions which make me recommend this series so highly.
So whether you are a teen or an adult with a disability; whether a teen or an adult who is a friend, a partner, a boyfriend, a girlfriend or someone significant in the life of a person with a disability, I recommend you buy and share this series of books. What other books reflect the lives of both the person with disability AND the caregiver/partner/friend; what other books can be read by both people and discussed so the person on each side learns a little more about what it is to be the person on the OTHER side.
So that's it, a little reminder that, yeah, things can suck sometimes, like today when it was found that a nerve cluster on my face had died. I sobbed, and when I kept saying, “My face!” my partner was there to squeeze my hand and say softly, “I know.” But, I can endure it, because I'm not alone.
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