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My Sister (Sylvie) has MS - A Reflection. (Page 1)

written by Matthew in the early 2000s.

I thought it might be useful for me to reflect on this to see how I might learn from the past. If it is useful to anyone else then that is a useful bi-product but I would expect your experiences to be different for the reason you are not, me and Sylvie is not your sister.

I am not sure what or how I am going to reflect on this so I guess its best to start at the beginning and ramble on from there.

At the beginning Sylvie knew there was something wrong and self-diagnosed herself long before the doctors agreed. I don't know how much it registered with me at that stage as she was at university and I was just finishing university and that as teenagers we drifted apart as brother and sister, as you do.

The main thing I do remember was just before Sylvie went to Germany for a year, whilst my parents went on holiday, I accompanied Sylvie to the doctors. It was a matter of trying to say the right thing to make her feel better, be positive, even though I really didn't know anything or realise how difficult thing would be. I'm not even sure if she knew at this stage.

I would say this was the same for the next few years just saying the right thing and very gradually coming to the understanding that something was not right.

I did not for example realise how bad things were for her when she was in Germany or with hindsight I might have gone over once or twice. But she was just my sister at the time and did not mean as much to me then as she does now, so I will not be to harsh on myself for this.

When she came back our paths did not really cross a lot as I left Sheffield. I think my parents possibly got to see more of what was going on than I did, although this does not mean that they accepted it.

Fortunately she had friends she could turn to and accepted her for what she was and let her cope with it in her own way at that time. Which she will say now was the wrong way, as she now knows the importance of diet, meditation and many other things in her life and this was a time of not giving a damn. But I will never criticise, just thank them ever because they were there for her through a very dark and lonely time.

I know there were occasions during this time when we did chat. I think I took the unconscious decision to accept that things were as they were and we'd work form there. This does not mean I understood the first thing about what she was going through and where this could potentially lead. I don't think I understood that death was a possibility.

I do however remember Sylvie in her dark moments talking about killing herself if she was in a wheelchair as if would not be worth living. An attitude which, thankfully, changed. Getting a mobility scooter which gives more freedom than a wheelchair was important to her attitude change as well. I don't really know how I coped with the statements about her killing herself, I think I probably wrongly, did not believe them and reacted by trying to be positive as possible and saying she would not end up in a wheelchair, not believing she would. So little did I know about MS at the time.

At each stage I think I just tried to help by being there when she was struggling round on a stick, but I never really saw the worst as I lived away, my parents were unfortunate enough to get that, my sister crawling around as she could not walk.

It was this that finally kicked the systems into action, with the social services getting involved which eventually lead to Sylvie getting her own flat appropriate to her needs. It was the stability this gave her that I think helped her come to terms with everything, I may be wrong. I think it helped my parents too finally accept everything.

It was around this time that Sylvie logged on the net and started to read and find out about MS. It was the best thing that could ever happened as it helped give her a network of support in what she was going through, from people who had some understanding of MS through experience. A doctor or relative despite how hard they try to understand cannot and never will really understand.

To Part 2

An Ode to Sylvie

Ramble on Sylvie’s MS 1

Ramble on Sylvie’s MS 2

What helps stabalise MS?

The Wrights Wedding

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05-06

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