Humans can withstand almost anything, but not alone.
- 18 Jan 08, 9:07 AM
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 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 鈥済ood鈥 hours a day鈥r 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:
about her growing into her sexuality as a disabled woman, without role models.
about the doctor who says the reason she has no pain relief is that she is not taking her pain medication 鈥渨ith the right attitude鈥.
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.
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 鈥渙ops, nope, you don't have that鈥 has already happened to me twice.
on her 鈥渞ight to be disabled鈥 so much that I adopted her ideas and then thought they were mine! Oops, sorry Ms. Bond.
of her daughter's transition anxiety in a social setting, she shares a journal entry in a 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 at the US Amazon site; and 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' (鈥業'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, 鈥淢y face!鈥 my partner was there to squeeze my hand and say softly, 鈥淚 know.鈥 But, I can endure it, because I'm not alone.
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Comments
I wnated to thank you for recommending the series "Translucent." I asked for it for my birthday which was this week, got it, and have finished reading the first two installments. I can really see the parallels to the disability experience ... not everything coincides with my own experience (since my own conditions are stable, for example, so there isn't the fluctuations and unpredictability that the girl in the series has to deal with), but even so. The wide range of reactions from other people do very closely parallel the range of reactions that I suppose anyone with any disability probably encounters. From people who love her but are sometimes overprotective (like her Dad), to people who love her and so freak out over some of the possible ramifications (like Tadama who overreacts when the girl gets hurt), to people who envy her, to people like the doctor in the hospital who basically refuse to even examine her thinking there's "no point", to people whose personal discomfort leads them to exclude her (oh, we can't have you going translucent at the wrong time), to people who are basically okay with it (the people who auditioned her for an acting role who did reject her, but based solely on her abilities and not the fact that she was translucent).
Do you know how often future installments in this series are likely to be published in English translation? (Or Spanish translation, for that matter :-) ) I guess that would depend partly on how many are already available in the Japanese original.
Thanks.
My apologies for the double posting. I tried to post this over the weekend and kept getting an error message that made it seem my comment had gone into a black hole. (No, not a "your post will be moderated" type message, a "something got screwy" message). So I made multiple attempts over the course of a few hours, kept getting the same error message, and finally gave up. Er. Apparently two of those multiple attempts actually did succeed ...
The third books was supposed to be out Jan 23rd but is delayed, I suspect you can order it online in the US and UK within a week or two.
I am really happy that a book which seemed so remarkable as a disability book to me was of use and interest to someone else, thank you for letting me know Andrea!