Hello,

I am new to the community, posting as a guest. I am an AB writer, working on a novel in which my protagonist's older brother suffers a cervical SCI. I am looking to interview people with similar injuries about their life experiences. I would like to hear your stories, and learn. The character in question suffers his SCI as a nine year old boy, in 1975. The story takes place mostly when he and his younger brother are 22 and 20, respectively, in the late 1980s. The ideal interview candidate would be a male who suffered a similar injury at a similar age (9 or so) and year (mid 70s). If you are interested in helping me out, I would greatly appreciate it. If you happen to live in Los Angeles, even better, because an in-person interview, ultimately would be the most helpful and informative.

Thank you!

Holmdel

I'm writing a novel too.

Mine is about a nymphomaniac who is paralyzed.

Her mission in life is to take oral sex to a whole new level.

I too would like to meet members who identify with this character.

Please send photos, videos, etc.

I am ready to travel, if you pay the hotel.

Gordon

How many levels ARE there?

Many


*ahem*

Good luck with the novel Holmdel!

Thanks.

Hi Holmdel

Sorry unable to help, L4 L5.

Sure someone will stop by and help you out.

Hope all goes well for you, Don't give up, your bound to get a few quirkie answers on here!

All the best

Al

Thanks, Al. I have had one member contact me personally offering to discuss, so I am enthused to follow up on that.

Kudos to you for actually doing some research instead of just writting without a clue, like you see all to often

Doesnt matter how much info you get... you'll never get it until it truly impacts your life. Good luck with the book though!

True

I tend to agree. If the character with the SCI was the main character, then I think I'd be fooling myself if I thought that research would be enough to allow me to write a novel that rang true. But because the book is about the younger brother, the big question is, can I "get" what an AB younger brother would experience. My goal will be to "get" the SCI experience well enough to write the supporting character's scenes and moments such that he seems to the reader to be a real 3-D human and to have his experiences be true enough to real experiences that it is not distracting.

Ultimately, the relationship between the younger brother and the older brother will draw upon my own experiences with my older brother who experienced a debilitating psychological condition in our late childhood, and the way this affected our relationship. The focus of the relationship will be on this emotional terrain - the history the two characters share, and how their relationship evolves. The SCI experience will not be the focus - but I still must get it as "right" as i can.

In my experience, the old adage, "Write what you know" seems the practical approach.
But, it's always easier when the novel goes to film to "SEE" the disability.--haha
Good luck to you.

In my experience, the old adage, "Write what you know" seems the practical approach.
But, it's always easier when the novel goes to film to "SEE" the disability.--haha
Good luck to you.
[/quote]

My older brother is struggling with paranoid schizophrenia (that is the debilitating psychological condition I mentioned). Purely from a novel-writing standpoint, it would be better in many ways for me to "write what I know" and have the older brother suffer the same malady. Frankly, it would be more satisfying emotionally for me to tackle it head on like that. But it would strike way too close to home for my brother and frankly would humiliate him. See, like many with paranoid schizophrenia, he doesn't accept that he is ill. In fact, attempts to convince him to seek help are interpreted as sinister threats to his freedom, safety, reputation. If anything, my essentially broadcasting my view that he is mentally ill in a book would confirm his worst paranoid fears that the world is plotting against him.

The idea of using a "physical" disability, rather than a psychological one is that it clearly is not "about" my brother in any way that would humiliate him in the eyes of whomever would read it, and yet at the same time I can explore certain aspects of how my brother's illness affected me without calling it that directly. In theory, this metaphor will allow me to explore the emotional issues I'd like to explore, while sparing my brother harm, and while providing a compelling read. We'll see.

Whew. You're taking your lumps here. Good luck with the novel. I can see where you are coming from. I have an incomplete spinal cord injury from which my body was able to regain most of its abilities. I just briefly lived with what many of these good folks live with for a lifetime. It is a very personal experience. I have found it so incredibly difficult to explain it to people who haven't gone through it that I understand why someone would be apprehensive to try and explain it again. I think the expectation is that you'll probably screw it up. Be patient and be compassionate. I think you've done a good job being honest with where you are trying to come from. I'm hopeful that you'll get some attempts from some to explain this experience. I would advise to take a lot of time in your research. My injury and the experience is constantly evolving. Don't expect to get the entire explanation from anyone in one sit down. I would say that the experiences of many people on this site could could each fill a novel on their own. Take care.

Thanks for the advice and support!

Holmdel,

Ditto the advice to read this site thoroughly. We are typical humans, forever trying to spill our guts in the hope that someone is listening. PM questions to individuals to follow up things that interest you. Most will be flattered.

I too am a novelist. My first effort was about a hermaphrodite black child growing up in the whaling industry, 1840s. Write what you know? I lived it and dreamed it for two years, does that count? Novels can be like true love- there is no explaining the attraction. Secondly, if you take a tangential tack from your own experience it can keep your focus from getting too narrow.

Always let Spirit, or your heart, if you prefer, be your guide.

And look at all the fun info you already got about how huffy chair-riders can be!

Write long, write hard.

Pwuff

My injury is different than what you're looking for. But one thing I would like to point out to you is that you have a specific time line here, & you picked it pre-ADA. I live in So.CA San Diego area; I got hurt in 1990 & when I 1st got hurt we took a lot more driveways because there were not as many curb cuts, & few buses had lifts on them so we had to take a lot more taxis & para-transit. Also I think that the attitudes that someone may have faced in the late 70's & in the 80's was different than what the general attitude towards us is today.......not that there still isn't some improvements that could still be made. And also remember that the technology used to treat a recent accident is not what/how things would have been back in 1975.

Hi Holmdel,

1975, hmmm, I was injured in 1978 at twenty one. As WB75 has pointed out, the attitudes/mindsets, technologies, physical/mental modalities and opportunities for any disabled person, have changed drastically in the last 35yrs.

Your premise is interesting, but given your sibling's paranoia, do you really feel your usage of SCI will in anyway not reveal your true fears, discoveries, own truths about your experiences. And, in avoiding your actual truths, will you not in the end, do a dis-service to those that have or are experiencing your same journey...as well as you, your sibling.

Feel free to contact me regarding my struggles during the 70s/80s and beyond if you feel they might be helpful. BTW, I have a younger AB sister, whose experiences were much different than mine, but no less traumatic in many ways.

Regards,

Jerry

Nice to see that you're making the effort to properly research your character - and apologies for the negatives reactions you've been getting.

Food for thought to fellow members...
When people new to SCI come to this site to do research for a book or whatever, we need to provide them with assistance, information, "education", etc and stop this constant negativity and moaning. What sort of impression are you trying to create?

Is it any wonder why people with SCI's are so poorly represented on TV, books, etc, if this is the sort of treatment writers get when they actually make the effort to get informed?

This isn't the first writer that's come here for information and been treated like this.

Hey,
I just wanted to say 'thank you' to those who brought up the differences in the 70s and 80s. As someone with a more recent SCI, I hadn't even really considered how that would be different. Thanks for broadening the scope. I'm fairly new to the site as well, but I would agree with the person who referred to being open about sharing experiences with the outside world. I had no idea what it was like before I got hurt, and came out relatively unscathed. But it totally opened my eyes, and now I realize that it is hard to even get my friends that are clinicians to understand what it is like! They're baffled at what I describe. They had no idea. I don't want to overstep as someone who most people don't realize had an injury, but I would go with knowledge is power here. If you're interested in people having a greater understanding, then speak up...and don't leave out the details. If people truly knew how hard this is, what amazing people you are for not only getting through it, but for dealing with the challenges only an SCI can know, they would possibly look at it differently. Maybe they would realize how much more they could be doing.

Sorry. I really like typing when I'm baked:)

DaveP,

I'm not sure if you are referencing me in your reply, but if I might, this site and the people here share so much of themselves, openly, in effort to support, get support. When a writer comes to a site such as this, with the plethora of SCI experiences it contains, why do they not look around, take the time to discover on their own, then come back to us with specific questions, so as to fill in the blanks. You speak of the effort to properly research their character, well...is the easy way effort, not in my book, sorry.

Just by looking at the various forum headings, sub headings, you can get an idea of the complexity of SCI, look within each and find the lives, frustrations, joys, of us all. Look in each member's profile, comments made by other members, etc. Even the reference pages Simon has created for all to see upon arrival are filled with amazing bits of information.

This is a magical place, full of treasures. Take the time to learn from it, as we all do each day; there is a search capability here.

I hope my first post did not discourage this writer, or any member for that matter, from contacting me, that was not my intent. Three decades of SCI notched in my belt so far and working/living even more. I am a fairly open book and much of me can be found within these Apparelyzed pages. If there is something of me that is not here...and how could there not be, I've only been here just over a year...please feel free to message me and I will do my best to reveal more of myself, my experiences...in private or public.

Regards,

Jerry

PS. Holmdel, FYI, I and a few other Apparelyzed members are just south of Los Angeles, I would certinly be willing to chat.

Hi Jerry

My comments weren't directed at you, or anyone in particular - more of a general comment.

Often young guys at Uni come here because they've got some "wonderful new bright idea" and want our input. Some ideas aren't new or functional, and they get ripped to shit by the usual moaners that grab any opportunity to complain.

The point I'm making is, we need to think about the bigger picture and try to be more tolerant and understand that some people have little or no knowledge of disability issues, may word things clumsily, or may have a totally mad idea. But should the be shot down in flames when they make the effort to get informed?

And so what if they don't read the entire web site before they post a question? Is this not something we all do or have done - ie post new messages with questions that have alreay been covered?

Instead of grabbing any opportunity to have a go at these guys, let's embrace the fact that they're here and making an effort to learn. So let's help them learn.

Dave

I don't think I or anyone else "ripped in to anyone"........I merely pointed out that things have drastically changed from 1975 to now. My 1st few years SCI were quite different than now; banks & grocery stores didn't have lower counters for us, less curb cuts so if you couldn't make the curb you had to find a driveway, & the technology/equipment has gotten a LOT better since my 1st chair. My 1st chair didn't even have the ability to pop the wheels off without tools......it wasn't til later on that they came up with the wheels popping off using quick release hubs. Yes people can go looking at posts & get a pretty good grasp of a lot of things.....but this was on a time-line........and I think that is where he/she needs to speak with people who were injured before ADA came into effect.

Jerry,

Thanks for the post. I agree that WB75 makes a great point about the timeline. And I will take you up on your offer and PM you re your experiences. Thank you!

Given my brother's paranoia, he can indeed find conspiracies and antagonism just about anywhere. That's true. But if I choose to have the character experience SCI rather than paranoid schizophrenia, then I think there are two important mitigations on the sorts of negative effects it could have on my him: (1) he won't feel that the whole world is whispering that he is mentally ill; and (2) the novel won't amount to a massive assault on his ego by his younger brother.

It has been helpful to me to go online and read about other people's experiences with a family member who suffers from paranoid schizophrenia, and so I agree that by not sharing my story, I do disserve others. But still I can't bring myself to tell that story because I am too certain of the pain it would cause my brother.

Holmdel





Dave P,

Thanks for the support. I appreciate it. But I do not feel like I was getting too poorly treated. It's all good.

I did sense a certain distrust. I trust myself, so I expect everyone trusts me, but that is a naive expectation on my part.

The distrust exists, and until I earn trust I won't have it. That's the reality, it's understandable, and it's cool with me.

Thanks everyone for the posts. I am doing more reading on this great site, and will be PMing some members with specific questions.

Holmdel

I like that this site's members actually do their own policing on stupidity and tolerance (general statement, not specific to this thread) using reason which sparks more reason. There really is such a different atmosphere here to other forums. I like that the issue has come up as it gives us a chance just to keep an eye on why apparelyzed.com exists. Here, I think/hope Holmdel has benefitted and also had to share a little bit.

Humour is always a little harder in text and when new comers don't know the regulars, but the reassuring comments of some do soften the blows of others of the hardened regulars (where is e-dog by the way???) which actually makes their contributions more valid, showing we really are a mixed bag!

Peace & Love, maaaaaan...

I would hope that the psychosis & the paralysis are kept totally separate. After all although there are people with pre-existing mental health issues who become paralyzed but the paralysis doesn't cause mental illness. You just know some idiot would put the 2 conditions together as one otherwise........some "normal" people can be total retards.

[/quote]

I would hope that the psychosis & the paralysis are kept totally separate. After all although there are people with pre-existing mental health issues who become paralyzed but the paralysis doesn't cause mental illness. You just know some idiot would put the 2 conditions together as one otherwise........some "normal" people can be total retards.
[/quote]

Understood. The character in the novel will not suffer psychosis. That's just my real-life brother whom the character is based upon.

I think you can still have both.....I knew a guy who had a spinal cord injury & he had OCD. THAT played havoc with the fact that he has to touch his wheels in order to go out & he was germophobic(sp?). Just make sure that it is clearly stated that he had the mental illness BEFORE hand & you can still use the original premise of your storyline. AND people do sometimes have more than one condition so in some ways it could be a good thing. I'm legally blind & have been my entire life.......but that didn't change the fact that I got a brain & spinal cord injuries.

Homdel,

Funny story saying you cannot really say how your brother will react to your story: I have a brother who is an alcoholic schizophrenic. Oh yeah, plenty paranoid. I once told my Dad that my brother came into the family to make the rest of us look good, and much to my fearful surprise my Dad told this to my brother. i thought that wa horrible. But my Dad knows him better and says Rob thought it was really funny.

I can relate. When my brother is not symptomatic, he has a great sense of humor and great sense of humility about things...and he'd laugh at a comment like the one your Dad relayed to your brother. But when he is symptomatic, paranoid, delusional, suddenly everythhing that was said before gets re-interpreted, he sees new connections, new conspiracies, realizes threats and provocations that he had naively missed before. And then he'd be wondering, hmmm, I wonder just how I'm being manipulated in order to make the rest of the family "look good"...

Wow... this has given me a whole new slant on my relationship with my brother! He's a heavy drinker, aggressive, abbusive, etc and then blames every one else. He's lead a life of heavy drinking and often excessive drug abuse, so I was never sure if he was "naturally this way" or the excessive lifestyle made him this way.

Mmmm - fuel for thought... I wonder how he'll react to the suggestion that he was put on this planet to make us look better! lol He's certainly overly sensitive to being the youngest, something which I never understood. I was always lead to believe that the middle child was the one that was most likely to be f...ked up, and that's me - and I'm perfect! "I'm not crazy, but my brother is and he says I'm OK!" lol

This thread has certainly been thought provoking.