I've spent a lot of time yesterday and today wondering about whether or not it is better to know when it comes to certain things.
In terms of my medical history, I know that I was born six weeks early. I know that I spent some time in the SCBU and that I was fed via an NG Tube while in there. I also know that when I was a few days old I got up to my first bit of mischief and pulled out the NG Tube. I know that one day there was really bad snow and they recommended traveling only if you really had too - and that my mum insisted on coming regardless (we live 35 mins or so from the hospital in good weather/traffic). I don't know much more about my time in SCBU but I've always figured that I needed oxygen for a while and had some drips and all that jazz.
And I could tell you that I've had four other admissions to hospital. One when I was pretty tiny and I had a minor chest infection. It wasn't really a big deal if not for the fact that my Mum was also inpatient at a different hospital with suspected TB. So when I became symptomatic they whipped me in quick just in case. What happened to me I don't know in detail, just that my Dad had to bounce between the two hospitals and that my Mum was on contact isolation.
I've also been in three times for surgery - at 2, 5, and 9 (approx ages). No real idea what the first one was but what I do know is that all of my surgeries were tendon releases, with occasional extras added in. My second was alcohol blocks (similar to botox I think) which incidentally, didn't work for me and ankles, the third was hamstrings and ankles. I actually think the first was a release of hip muscles because I seem to remember having a scar on my bikini line. I have several clear memories of my last surgery, some good, some not. The previous ones I don't and the scars on my legs and the stories my parents tell is all I know.
There was also physio, and visits with OT's and wheelchair assessments and all the other exciting stuff that happens when you have CP. Splints and clinic visits, SEN statements, serial casting and walking frames.
I'm sure there's a lot of stuff that I don't know about; I clearly don't remember every single visit to the hospital or physio session or any of the myriad of things that come as added extras with a child with CP. But then I don't remember everything "normal" that happened when I was tiny either. It's never really bothered me and I've always known that if I wanted to know I could talk to my parents about it. I've just never really wondered about it enough to ask. And most of what I've been through has always been pretty obvious to me.
But yesterday I did talk with my mum about my time in SCBU. A good friend who has medical issues of her own (some similar to mine, some not) called me. It was the first time we have spoken in months and one thing that she mentioned was that she had recently read her medical history. She shared that there was a lot in their she hadn't anticipated their being and that reading it had upset her. She also shared that she felt it had been deliberately kept from her. It would be easy to say that the stuff that upset her is run of the mill given the nature of her conditions but that would be unfair to her. But then I have never read my medical history and maybe as obvious as I think most of what happened to me is, there would be things that if I were to read I wouldn't have predicted and that might upset me.
I've never desperately wanted to read my medical history (my friend had a reason to; she didn't read it just because) but I do think it would be interesting. from an academic point of view. Mum and I did talk about it for a while last night because the conversation with my friend got me thinking. She told me a few interesting stories, and told me that she'd always assumed I knew what had happened. Truthfully I knew it all but I didn't know tiny bits of it like being in SCBU for three weeks and that my parents couldn't hold me for the first eight days - obvious both were things I was aware of but not the exact details.
The exact details are very interesting and if I ever had reason to collect my records like my friend did I would read them all. But as for now I don't think the fact I know I could talk about it but we don't really has ever hurt me.
Since talking with my friend however I've been wondering how would my life now/growing up be different if I did know all the ins and outs? Not wondering so much that I would take the time to find out but wondering all the same.
Personally I'm too grateful to have survived my premature birth and all that threw at me and too busy enjoying the here and now to worry too much about what it took to get me to this point.