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A Long Long Time Ago


Guest sharondale
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Guest sharondale

Hello everyone,

I only recently learned about this site. I had a SAH way back in 1967, when I was 12 years old. I notice that everyone on this site so far seems to have had their SAH not too long ago, so I thought you might like to know that from my perspective, life with the consequences is just life!

My bleed was in the brainstem and as a result I have right-sided weakness, a very slight aphasia, and I am easily fatigued. But no one notices these things about me, which at times can be aggravating because I'm often aware of being unable to meet the expectations of others.

To make a long story short, I finished school, went on to get my Ph.D., and settled down to become a Sociology professor at a university, where I teach disability studies and research methods.

For many many years I felt very isolated in my experience, and then I decided to do something about it. I got a grant to collect the narratives of other women who survived a hemorrhagic stroke at a relatively young age. It was fascinating to travel to many places and meet others who've been through similar things. I'm pleased to say that the first book based on my research was just published earlier this year. It's called A Change of Plans, and it's based on 11 of the women I interviewed. It's a very readable book, as I intended it for other stroke survivors.

So that's me.

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Hi Sharon and welcome,

I only started this website in Aug 2006, so we haven't been around for very long. :)

I also took part in Alison Wertheimer's book, as at that point there didn't seem to be very much info (if anything) on patients experiences of SAH.

Thanks very much for letting us know about the publication of your book..... I'm sure that there will be quite a few members who will be interested in reading it. I shall certainly be picking up a copy and will also pass the book title onto the SAH support group at Southampton General Hospital.

Here's a couple of links if any of you guys are interested in purchasing Sharon's book....

http://www.sumachpress.com/change.htm

http://www.tesco.com/books/search.aspx? ... 2Bmatchall

I shall look forward to reading it! :D .....

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Hi Sharon and welcome to the forum. (I'm a newbie and everyone here seems to be so lovely and welcoming)! :D

Well done you for doing so well and writing this book and sharing yours (and other's) experiences with everyone.

I look forward to reading it.

Should make very interesting reading.

Tgc,

L x

(thanks for the links Karen :D )

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Hi Sharon

Welcome to the site, it is indeed great to hear from an old hand at this game, We have Linzi as well. I look forward to reading your book and am inspired already that you have gone on to become a lecturer. I've currently being toying with the idea that I may have to retrain, but will maybe hold back for another while.

Look forward to hearing from you.

Aine xox

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Hi Sharon

Welcome to the site. I'm looking forward to reading your book - Aine's right, your achievements are inspirational. Though admittedly, I do feel we all deserve a pat on the back for being here... ;)

That sounds exciting Aine, do you have any thoughts about what you'd like to do?

Looking forward to hearing more,

take good care, Blondie

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Hi Sharon,

Good on you gal, like the others I shall be reading your book.

Appreciate your honesty about still being fatigued etc but I admire your guts and determination. :)

Thank you and take care,

Mollyx

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Hello Sharon, WOW

Lovely to see you posting here.

I hope you don't mind but I'd already told Behind The Gray about you, after you sent me a copy of your book, which I read and re-read and found very useful. Thank You!!!

I'd been watching Behind The Gray since its birth and had joined a while ago (several times) but I kept forgetting my password. I really wish I had'nt left it so long, they've been lovely to me and Mark (my husband) and I are going to meet some of them at a meal in December, I can't wait.

My stroke isolated my from my friends then I made new friends who'd had strokes, but I always felt different, because I had a bleed, I feel like "I've come home" here.

I hope you are well and happy.

Julie

x x x

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HI BLONDIE

Sorry I forgot I hadn't replied to this. I'm not really sure what to do. 4 Weeks ago I was despairing and thought I really can't go back into Social Work. My Memory's terrible, I blab what I'm thinking. I've lost the sensitive soul that I was. However 4 weeks on. I'm now thinking maybe I should hold on. I have always been a people person no head for business. I was inspired by Sharondale, especially doing her Phd. Also I had that Neuro P appointment. Were to me my memory is appalling they said its "average" I was so chuffed. And to top it last night I was playing the Wii (I will admit to having had a nap and the guys were all drunk) But I was fantastic (just a bit) at the baseball. Donald was torn between applauding me and being totally scundered that I was thrasing them :lol:

All in all not going to rush things. I am continually amazed at my progress. I've lots of Hobbies but no real job that I'm passionate to do. Whilst I liked the money in my old job I'm now learning that whilst its a struggle I can downsize. And I soooo don't miss the stress. What a long winded answer. Had flirted with the idea of Nursery Teaching but think that could be influenced my the fact that I'm extremely broody and the moment. :D

Take Care

Aine xox

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Guest sharondale

Hi all,

Just want to say thanks to all of you for welcoming me to the site. It's a good one, and I hope that membership continues to grow. There's an American stroke site that's set up similarly to this one, but it's for all types of strokes rather than specific to SAH. And most of us with SAH tend to be young when it happens.

I do hope, though, that my own experiences, particularly my experience of having now lived 40 years with this and thriving, will encourage all of you to not only know that you are not alone but also, that life with SAH can be wonderful, even if you have significant disabilities. Life, I believe, is what you make of it, and each of us has to figure out how to live with what we've got.

A lot of you, being such recent survivors (relative that is to my 40 years of survival) are likely quite concerned about rehab and wondering how much more you'll recover. From my perspective, and I'm not a medical doctor but I know a lot about this, recovery never ends. Which is not to say that you should hope to one day be 100% back to what you were pre-SAH - that won't happen - but if you're patient and don't give up, you're likely to amaze your doctors! It is my firm belief that doctors and physiotherapists don't know very much at all about stroke recovery, and because each person is different, each will have a different recovery experience.

I also want to say about recovery that my advice would be to get used to thinking of yourself as disabled, but don't think of disability as limiting you. While there may be things you can no longer do - and perhaps might not ever do - absolutely everyone has things they can no longer do that they used to. But there's still lot's of stuff you CAN do, and that's what you need to focus on. I hope I don't sound preachy here, but this is one of the things I have learned in my life and it has helped me tremendously to take this attitude. So I offer the advice hoping that it helps someone else too.

To all of you: thanks for your enthusiastic comments about my book. :D I truly hope that others find it both inspiring and helpful. And to Julie: thanks for your message. I'm doing well, though far too busy for my liking these days.

Cheers, :D:D

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Thanks Sharon,

Good advice .... I remember myself and Scott (Rince) having a chat at our first social meet and we both considered that we classed ourselves as "disabled" "brain injured" or whatever (think that it was a shock to others listening!).... I don't worry too much about the labels .... I've just found it harder convincing others that I'm not the same as I once used to be, that's fact .... :) I'm okay with the person that I am now ....

I'm still making recovery ( 2 years and 2 months in) and I believe that I will continue to do so.... I haven't particularly changed from the person that I was (apart from the physical stuff) .... and to be honest, I've always "liked" me .... which probably helps .... I've had times when I've lost feeling "positive" and still have personal relationship issues to deal with, but the SAH won't get in my way.

It's not been an easy road to go down ... but I still like "me" and I know that I'm okay......

Love to all xxx

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