Bit of a wobble today

Today, I attended the first of a two day Living With Sight Loss, facilitated by the RNIB.

Right up until last night, I was looking forward to participating on this course, as I seem to have a  hunger to learn all I can about life with diminished sight and develop strategies for making the most of the sight I have left.

However, last night, when thinking about today, I started to feel a little anxious, and this morning, when preparing to set off, I felt quite nervous.  However, convinced myself it was just because its still all new, there would be a group of people there who I didn’t know, and all that this brings with it.

Living with sight loss course – day one of two

When I arrived at the revue, I was early ( I hate being late for anything ).  I was so early, the facilitator hadn’t even arrived – but, that was fine with me.  I walked into reception, and said to the young lad behind the desk that I had come for the Living with Sight Loss course.  he looked a little confused, and turned to a colleague and asked “Do we have a living with sight loss today?”.  This threw me into an internal spin – firstly, because I thought oh, God, I’ve come to the wrong place and now I’m going to be late for the course, if I have to go somewhere else (My lift had now gone) and secondly, I felt embarrassed that I had plucked up the courage to say the words “living with sight loss” to a stranger and the person didn’t recognise it.  I dont really know how to explain it any better, so, I hope t makes sense.

Thankfully, the receptionists colleague immediately responded with, “were do indeed, yes” there was a brief exchange between the two staff members lasting only about 30 seconds, but it felt like hours as I was stood there, feeling vulnerable.  I was asked if I was a member of staff delivering the course, and I said, no, just a. participant.  The chap said that the facilitator hadn’t yet arrived, and would I like to take a seat.  he also asked if I needed help getting to the chair to sit down on – which I didn’t, but the fact he asked seemed to put me a little at ease again.

15 minutes later, and the facilitator arrived and signed in, she was told that I was waiting and immediately came over to me and introduced herself.  She was polite and friendly, and asked if I needed and elbow to hold onto whilst walking to the seminar room.  I did take her arm, as in a new and unfamiliar building, I’m so conscious of trying to  make my way without stumbling or walking into something, like a dork!

We made general chit chat whilst she was getting the room ready, and put me at ease right away.  other people then started to arrive, and in the end there we’re about 16 of us, including people delivering the course, people like. myself with various levels of sight loss and so e of their partners.  Some people walked in with white canes, some with white and red canes (Signalling that they were not only blind/partially sighted, but had a hearing impairment too). One chap arrived with his guide dog, and others like myself with no visible aid.

It was at this point, where my, little wobble began.  Actually seeing, and being in the company of other people in similar situations just brought home the reality of where I was and the reasons for me being there – I have sight loss and am trying to learn how to cope.

There was of course, a structure to the day, but, it was a relaxed atmosphere and everyone had opportunities to participate as and when they wanted to.  People spoke abut their experiences of living with sight loss and shared their stories of how they came to be in the position they are now in.  They spoke about their day to day living and their struggles, but, also the ways in which they have developed coping mechanisms and adaptations to maintain independance.

I have learned myself in the very short space of time that I have suffered with sight loss that it affects not only you, but the people close to you.  The people close to you don’t know what to do, how to cope and they too have to learn.  Its easy for me to take out my frustration out on those close to me, when they perhaps forget that I cant see so well anymore and then it appears that they don’t care.  But, of course they care, this is all new to them as it is to you. A personal example of this is when we go for a meal and the restaurant is quite dimly lit, the waitress leads you to a table, and the person you’re with marches ahead to the table, leaving you there struggling to find your way.  I then get frustrated and upset – however, I have always just walked to countless tables in countless restaurants in the past without issue.  The person I am with of course is doing what they and we always did.  They simply forgot for a second that I could now see very well – Its as new to them as it is to me.

There was a lot of positivity in the room, we shared experiences and various people from different arms of the RNIB and other organisations chipped in with their subject of expertise, all for the same goal, to help us develop coping mechanisms to deal with our loss. To remind us that there is help out there and to take all the help we need.  It wasn’t that many years ago that there was very little help for the visually impaired, so we are in a. better position now than ever.

Benefits and concessions were discussed that may be applicable to us and we were also given. a great talk and demonstration on technology and accessibility.  Whilst the group was a large one, we all had opportunities to say that we were struggling with the most, and to share information and tips to make it easier and provide possible solutions.

However, I cam away feeling quite flat and down about my sight loss and what lies ahead.  I do not fully understand why this should be the case, because everyone in the room had a common goal – to help each other. Everyone in the room could appreciate and understand all the concerns raised.

Whats wrong with me?

So, why on earth did I feel flat?   I have taken things on board so well up to now, and embraced the help offered and thought that I had accepted the situation.  I have challenged myself and was in good spirits.  I have given this lots of thought, and the only reason I can come up with to explain why I feel down about it all now is that I clearly haven’t fully accepted it (However, it is just two months since I was certified as partially sighted). I think that by seeing other people with the same problem, and indeed people with worse sight loss than myself, it has just brought home the reality of it all, the long road ahead and the challenges I have yet to face. It has made me realise that this is now here to stay, and is likely to worsen in due course.  So, whilst I have been researching sight loss issues for the last two months, and absorbed mountains of information I have only touched the very tip of the iceberg.  Basically… Im scared.

I also think that I am at the beginning of a grieving process.  Sight loss is “a loss”, just like any other loss.  Its like a bereavement of what was once there and the realisation it no longer is.

I have come away from this first day with lots of useful and practical information, and I think that in a day or two’s time, once I have had a chance to reflect on the day, I will pick myself up, dust myself down and feel altogether better again, and make use of the information and links that I have gained.

It will be interesting to see how I feel after the next session next week… I will update this post again.