|
|---|
My Sister (Sylvie) has MS - A Reflection.
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 attitiude which, thankfully, changed. Getting a mobility scooter which gives more freedom than a wheelchair was important to her attitide 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.
It was not in my opinion even the friends and ideas the net opened up that were crucial in Sylvie starting to cope with MS. The bottom line was the eventual psychological decision she made that she was going to fight this and make the best of it she could for herself.
This included not being ashamed of having MS, a big thing I think for any sufferer the feeling there must be something wrong with them for them to be this way. A feeling, that never totally goes away?
Sylvie's statement that she was not ashamed was to do a parachute jump for charity and publicise this I the local press. Even though I went with Sylvie when she did this I did not realise how important this was for her!
It may not have meant she was confident about the future but I was an important step towards more confidence. It was also was good as it brought her new friends in Sheffield who met her because of MS and brought out the true friends in her previous circle of acquaintances.
Learning more about MS was important for Sylvie, the inter-net being an essential source. Sylvie kept finding new things that might help against her MS and would always experiment to see what worked for her. Sylvie the scientist won't mind me saying that she has probably made herself a human guinea pig in many ways as she has tried many things that have not worked.
To me the most important things seem to have been Sylvie's decision to make the most of her life no matter how difficult, finding the correct diet for herself, meditation and the ability to develop a life of her own for herself. One that is as near as possible to what she would describe as a normal life. One involving family, friends, a partner, interests, a purpose and eventually work.
I think that Sylvie has found a partner in Steve who accepts her for what she is and took her on (as a brother would always say about a sister), even though she had MS has been an important for her self-esteem.
It has been the combination of support from family, friends, a partner, having interests & a purpose that, have been crucial to her progress. The main reason for the progress is still Sylvie herself. If the person with MS will not or does not want to accept it then there is little one can do.
Sylvie has changed her MS from progressive to relapsing remitting due to her stubborn mindedness whilst we have seen others suffering get worse and sometimes die as they have decided they have had enough. I have an idea from Sylvie's experiences that can be tough and that it takes a lot to be pig headed about it. So again I will pass no judgements on others decisions as I have not suffered MS, I just thank god my sister is a stubborn so and so.
As Sylvie has learnt more about MS, so have I, from articles and information she has e-mailed me. My knowledge still is minimal compared with hers as I have not really been pro-active in gathering up information. By reading what she has sent me and listening to her when we chat I think I have picked up enough to be an understanding ear when she needs someone 'independent' to talk to.
I think that is probably the role a brother or sister can take up best being the person who is there to listen. To tell the person with MS that they are right when they are right and not to be silly when they are being tired neurotic and silly but that they should go to sleep or meditate in whatever order is best for them and that. That may sound harsh but the support is usually needed late at night when they do not feel it is right to talk to parents or partner. You as a brother or sister have to listen, agree, discuss and at the end of the conversation tell them to be sensible, as things will not seem half as bad in the morning, whilst realising that as they are so tired they will probably not accept anything you say.You are someone they can talk to as they are making their own decisions, someone neutral (ish) who is not pressurising them. Who lets them be themselves, sensible, neurotic, many stages in between and does not judge.
Thinking about my role it has been to be there, there is not a lot more you can do in my opinion except be there when they nned you. I know the whole experience has brought us much closer together as brother and sister, maybe this woud have happened anyway but i'm not sure about that. Sylvie may say I've done more than be there and offer support but that is for her to say not me because in my opinion anything I have done in the process that has helped Sylvie cope with MS pales into insignificance compared with what she has done herself.
On this I can only say WOW.
Visit her site, be enlightened about MS and find out what a great person Sylvie is.