Tuesday, September 22, 2009

Think about It

I called this post Think about It because I'm going to ask a bunch of real-life questions and I just want people to ponder for a moment. Something that I wonder is what you would do if you were in my situation. Everyone deals with situations and handles things differently. For those of you who have not gone through this ordeal, how would you react to all of the sudden waking up and finding out you were paralyzed? What sort of things would go through your mind? How would you handle it? I know it's hard to imagine unless you're actually in that situation, but try to put yourself there.

Now I want you to imagine a different scenario. What if you knew you were going to become paralyzed before it happened? Again, how would you handle the news? How would you prepare? What things would you do before it happened? I brought this up because there is someone out there who knows they are going to become a quadriplegic on a vent but doesn't know when. It is a very different situation. In my case I just woke up and found out. I didn't get a chance to prepare or figure out what things I needed before hand. Then again I don't know which would be better. It's a lot to think about and imagine.

Don't feel obligated to share your thoughts. This was just to get people thinking. If you'd like to, you can leave a comment. I would love to hear what you have to say. Also, feel free to comment if you have gone through one of these situations.



Anonymous said...

It really is an impossible thing to imagine. I can't even begin to comprehend all the little things I take for granted that being paralyzed would prevent.

As an example, I have a bad lower back. Every once in a while, I'll tweak it in such a way that it's not just painful but it literally limits my ability to do simple things, like stand up normally, pick something up, walk (without a slow hobble) etc.

It goes away in maybe a week, gradually getting better after a few days. But every now and then while it's hurt, I'll kind of forget that it's hurt and go to do something "normal" and ARGH!?!

At that point I realize something I've taken for granted.

I have a question, though: what do you mean that you know someone who knows they are going to become a quad on a vent, but doesn't know when? What type of situation is that?

Matthew Smith said...

I think we can think as long and hard about this as we like, but we won't know how it would affect us unless it actually happens. Personally, having a spinal cord injury has not exactly been one of my greatest fears, as it probably won't happen and has never happened to anyone I know, but it has been one of the things I imagined would distress me the most; besides the loss of independence (assuming it was as at as high a level as yours), there is the matter of whether I'd be able to enjoy intimacy with a woman (not that I've had much of that the last 10 years anyway!), something which is less of a problem for women and particularly those with incomplete SCIs who actually manage to find a partner (I know many don't). I know that sounds petty, but it's important to a man. I also know I would dread the long hospital/rehab stay, the surgery which might make any SCI worse, and the uncertainty about whether I could go home or into "a home", and what I might find there; once I was home, I expect I would end up spending most of my time doing the same two things I do now, with a bit of help: writing and reading stuff on the net, and reading the paper over a coffee in Kingston! That's probably one way of saying I should get out more.

My absolute worst fear in life is nothing to do with any disability; it's being trapped in an abusive situation, and this largely stems from my experience at a 'special' boarding school in the early 1990s. I was quite surprised when I read three different quads compare their situation to prison, and two of them in particular mentioning The Shawshank Redemption, a film I found too distressing to sit through. The guy in that film was getting raped repeatedly and was surrounded by criminals and hostile guards who beat him to a pulp when he complained, rather than people who loved and cared for him.

As for the situation of finding out I was going to become paralysed, I could do with knowing more about this person's situation, such as what medical condition they have and whether they are already disabled to one degree or another. I'm not sure what difference the vent makes - after all, is being an incomplete C1/2 quad on a vent any worse than being a complete C3 quad without one who can't feel anything below their neck? I would certainly be making preparations, such as adapting my home or looking for a suitable alternative; if I could afford to, I'd be making sure I did things I wanted to do and went places I wanted to go while I still could, and meeting old friends and family that I hadn't seen in a while. I do love walking in the hills, and I would make sure I did plenty of that, and not just looking at them from the car window!

One thing I do know is that it's a very unpleasant prospect for many people, particularly those with MS and motor neurone disease and other such conditions. We have had two court cases in which people with those illnesses (Diane Pretty and most recently Debbie Purdy) have tried to get the law changed so that their partners could help them kill themselves if it all got too much. There was even a case a few years ago in the UK where a lady who had been through exactly what you describe took her hospital to court to get her ventilator switched off. The judge agreed with her - of course, the judge has to uphold the law - although said she personally wished the woman wouldn't go through with it, but she did anyway. Personally I'd rather be alive than dead, but to people who don't believe in an afterlife, it's difficult to persuade them of that.

Rai said...

I agree with what matt said. He said it better then i could.

Jenni said...

Definitely true about people taking for granted what they have. That's one reason I did this post. If it hadn't happened to me I don't think I could imagine what it would be like or how I would deal with it. I had a hard enough time figuring that out when it happened.

Finding someone has always been on my mind. I don't know of many people who would choose to be with a quad.

As for the person who knows they are going to become a quad (whose name I will not reveal) they have a benign tumor on their spinal cord from C1 to C6. They will eventually need surgery to remove the tumor which will inevitably damage the spinal cord, most likely leaving them paralyzed on a ventilator.

Matthew Smith said...


Please tell your friend to read this article, by Victoria Brignell. She became paralysed at the age of six from exactly this condition. She is paralysed from the neck down with feeling in most of her body, and was on a ventilator for a while, but came off it within a year.

Crip's Column: Anniversary

I contacted the author through Facebook, and she replied, although after several weeks. Perhaps you should write her and put her in touch with your friend.

Matthew Smith said...

Hi there,

Also, I thought you might like to read a recent blog post I made which touches on some of the issues raised here. It's inspired by a news story last week about the tragic death of a mother and her disabled daughter in England, but diverges into people's attitudes towards disability and the disabled:

Disability and Brutality

Rai said...

I think there's a whole mess of answers out there for both sides of that argument. Some straightforward ones and some weird ones i'm sure but I think one of the best answers for being with a quad would be a soulmate kind of connection thing.

quekjl86 said...

for a normal person, it would be quite impossible to imagine how and what to react when he/she wake up and find themselves paralysed but i think they will feel y must it happen to them, feel is end of the world and what are the things they unable to do anymore... For myself who is a complete C1-2 patient and dependent on a vent like jenni, i have gone through this process... when i woke up and find myself paralysed neck down, i felt like it is the end of the world for me esp i cant move anything from my neck down anymore.. alot of things went through my mind and i was depressed for quite some time. is really something not easy to cope with..

as for the other scenario, if i knew i going to become a quad and depend on vent, i will try to do as much things that i like as possible and prepare myself for the day to come. at least i can have some time to handle the news and accept it.. this is better than waking up 1 day and find yourself suddenly become paralysed


Matthew Smith said...

Talking about anticipating becoming a quad, I thought I might share this article I found in the Guardian on Monday, in which a comedian called Charlie Brooker writes about having a needle stuck into his spinal cord via his neck.

It sort of reminded me of how low-level quads hate being told they're not quads because they can move their arms. This guy pushed the bar even higher, expecting to end up like the guy who wrote The Diving Bell and the Butterfly. I don't know if your friend with the tumour will find this amusing, but I did.

Jackie said...

Gosh, now there's a question and a half!!

I feel absolutely certain I would struggle to cope and accept the situation if I woke up paralyzed. I live a totally independant life right now and to suddenly find myself totally dependant not only on people but on machines as well would be very very difficult. You have no idea how much I admire you Jenni, but I sense it must not have been an easy road for you to get where you are now emotionally.

I think that knowing in advance would be terrifying. As much as I like to think I should use the time I have with an able body to do as much as possible, in reality I would spend so much time in counselling I'd never get anything done! I think if it has to happen to me then sudden would be best, I would never cope with the fear of the unknown and I don't think all the time in the world would be enough to prepare for the inevitable. No, knowing about it would not work for me at all.

As for finding a man, well I'm 37 and I haven't managed that yet so I already know how that feels. As the years tick by and I watch my chances of having my own family disappear, I am experiencing a whole range of emotional issues I never imagined I would feel. It's one miniscule part of life you and I share - knowing it's not impossible but having to accept it may not happen. Me due to my age and you due to your situation. I hope with all my heart that it happens for you.

J xx