"Than to be overlooked." Mae West.
Quoth? I'm not Quoth, just a little quonthused.
Bad puns over with, I had my latest round of meeja contact this week, with a questionnaire on the BBC's disability website Ouch! It is my first real contact with disability oriented media, and over all I think it went well, with a tiny caveat. I said that some people were expecting the book to be a bit 'Jokey Blokey' (c) E.F.L. but that they were surprised when they found the book to be more personal and emotionally open, etc. Unfortunately, this made it into the interview as me having written a Jokey Blokey (hopefully I won't hear that expression again. Ever.) book.
The encounter was also interesting because it brings me into contact with a community of which I am a part, but very much a novice, when compared to people who have been disabled all their lives. It reminds me how I somehow manage to get the nature and date of my accident into the conversation within 5 minutes of meeting someone for the first time. As if I'm saying, "I'm not normally like this, you know."
And then, when I talk to other disabled people, I just feel a bit rubbish, as if I am falling between two stools.
So, the other plug for the book came in a newsletter for Back Up. It's good to get a mention for the book and obviously the blog. (Enough links, already)
Other news... More pain. It's been a bad couple of weeks in this regard, having been reduced to tears on one occasion. I think it's progress from being reduced to whisky, and hopefully will prevent me from being reduced to a jus. The tricky decision to wrestle with is whether to have further surgery, in the form of a cordectomy (complete severing of the spinal cord). The reason for this is that my L1 vertebra wasn't fully re-aligned after my accident, and is therefore trapping my spinal cord, causing it to stretch when I bend, which could be a contributory factor as far as pain is concerned. The compressed cord also increases my risk of developing a syrinx which could in time affect nerve bundles further up the spine, and increase my paralysis. Scary thought. The thing is, as with all of this stuff, there are no guarantees. No guarantee that I will or won't develop a spinal cyst, or that my pain will be improved or worsened. Why are these things never clear cut (bad pun)? Another 'we like to think' moment, I know, but we do think of our bodies as machines and our doctors as mechanics, mainly because the whole messy, organic, inconsistent way that our bodies work is rather too frightening to contemplate.
Quoth? I'm not Quoth, just a little quonthused.
Bad puns over with, I had my latest round of meeja contact this week, with a questionnaire on the BBC's disability website Ouch! It is my first real contact with disability oriented media, and over all I think it went well, with a tiny caveat. I said that some people were expecting the book to be a bit 'Jokey Blokey' (c) E.F.L. but that they were surprised when they found the book to be more personal and emotionally open, etc. Unfortunately, this made it into the interview as me having written a Jokey Blokey (hopefully I won't hear that expression again. Ever.) book.
The encounter was also interesting because it brings me into contact with a community of which I am a part, but very much a novice, when compared to people who have been disabled all their lives. It reminds me how I somehow manage to get the nature and date of my accident into the conversation within 5 minutes of meeting someone for the first time. As if I'm saying, "I'm not normally like this, you know."
And then, when I talk to other disabled people, I just feel a bit rubbish, as if I am falling between two stools.
So, the other plug for the book came in a newsletter for Back Up. It's good to get a mention for the book and obviously the blog. (Enough links, already)
Other news... More pain. It's been a bad couple of weeks in this regard, having been reduced to tears on one occasion. I think it's progress from being reduced to whisky, and hopefully will prevent me from being reduced to a jus. The tricky decision to wrestle with is whether to have further surgery, in the form of a cordectomy (complete severing of the spinal cord). The reason for this is that my L1 vertebra wasn't fully re-aligned after my accident, and is therefore trapping my spinal cord, causing it to stretch when I bend, which could be a contributory factor as far as pain is concerned. The compressed cord also increases my risk of developing a syrinx which could in time affect nerve bundles further up the spine, and increase my paralysis. Scary thought. The thing is, as with all of this stuff, there are no guarantees. No guarantee that I will or won't develop a spinal cyst, or that my pain will be improved or worsened. Why are these things never clear cut (bad pun)? Another 'we like to think' moment, I know, but we do think of our bodies as machines and our doctors as mechanics, mainly because the whole messy, organic, inconsistent way that our bodies work is rather too frightening to contemplate.
Hi
I feel sad when you talk about your pain and I feel that you hold back a lot from talking about it - I wish you wouldn't as I feel it's important for people to know, and I for one would like to know more about what pain relief you're able to take and what else helps you to cope with it.
In my ingnorance, I didn't realise that people suffering from paralysis suffered severe pain. My elderly mother suffers from severe leg pain, but she can't have her knee or hip operated on because she has heart disease and diabetes - the surgeon wouldn't even risk an epidural. She's unable to take pain relief as anything causes er severe nausea, probably because she's on so many other drugs for various things. She really suffers, but no-one seems to take much notice - it's kind of shut up and put up, which seems so cruel. Maybe ageism plays a part? I'm not sure.