I honestly feel like giving up now. What am I to do? According to what I’ve been told, if the operation was successful I should have a pretty much full recovery from my retinal detachment in my right eye by the third to fourth week after the operation. It’s longer than that now, and I have still had no improvement in vision in my right eye in the month and a half since the operation,
beyond that minimal amount previously noted. I want to get back to work as soon as possible, to get on with living my life with my impairment, but I have had no useful advice along the way. The RNIB were the one body I thought I could turn to, but as you’ll discover by reading on they were as much use to me as a chocolate fireguard.
Angie found an online leaflet about the problems I'm going through, entitled
Sight in one eye only (monocular vision) and people with learning disabilities, and although it's partly about learning disabilities (which I don't have), there's a lot in that leaflet which ticks all the boxes for what I'm going through. For example it says:
What visual problems does monocular vision cause?
* People usually find that monocular vision will affect:
* Three-dimensional vision - this will affect how objects are perceived
* All-round vision (peripheral visual field) - it is estimated that something like a fifth of the field of vision is lost
* A partial shadow over the vision caused by the nose (nasal quadrant loss)
* Visual acuity - there is a further effect in that people generally see better with both eyes together than with either eye separately (binocular summation).
What are the effects of these visual problems?
The problems that may be experienced by individuals include:
* balance trouble
* problems with finding the way (orientation)
* difficulties working out where things are in relation to one another (learned spatial awareness)
* bumping into objects
* bumping into people
* problems going up and down stairs
* difficulty with steps, kerbs, rocks, uneven ground and changes in floor level and escalators
* problems manoeuvring a wheelchair
* difficulties in using the eye to direct the hands (eye-hand co-ordination)
* difficulty with picking things up
* clumsiness
* difficulties with carrying out daily life tasks (like pouring water from a jug into a cup)
* overall problems with tasks that demand good near vision (visual acuity) - like reading, finding small objects
* problems with most sports
* overall problems with judging depth (depth perception)
* inability to see three dimensional images - things may seem ‘flat’
* problems judging distance at less than about three feet (just under a metre)
* problems judging speed, such as the oncoming traffic
I pretty much tick all the boxes for that above (but I don't use a wheelchair); it's not an easy ride for me at the moment.
I asked my GP for advice on moving on with my life, making preparations and adaptations to my life and work to return to work, but he said he couldn’t refer me to Social Services or anyone like that until after my next hospital appointment because the hospital I’m currently under would know better. From experience, they don’t, but he happily wrote a sick note to keep me off work until the end of March. Write another sicknote. That’s not going to be the answer for ever, medical practioners, particularly not for my bosses; I want to return to work, but you don’t seem to want to refer me to anyone who can advise returning to work.
Then on Thursday 12 March 2009, I finally plucked up the courage to reach out for help. It was difficult. By making that call, and going to the people who seem to have the reputation for being the numero uno of the visual problems world, it took a lot of courage. Every day I'm scared because of being without information, and being without full sight. I was scared holding the phone, I was like a little lost lamb asking for guidance from a shepherd. (Puke inducing image, isn’t it? All cute, etc. but true and accurate.) I thought I’d contact the people who would know about sight issues, the Royal National Institute for the Blind (RNIB). Surely they’d have some advice for me? I phoned the RNIB helpline. I had been advised that I might look into getting registered as visually impaired, as it might open up possibilities to then maybe getting aids to correct the numerous problems I was encountering and see about getting some assessment to sort out going back to work. I think the person’s name at the advice desk was Sue, but it doesn’t matter now.
My confidence is currently low, and I’m quite emotional at the moment, but in summary I’m far worse after my conversation with the RNIB. I honest feel like I was wasting my time, as she made me feel like a fraud for asking for advice, because as she kept reiterating, I have one good eye. I do, but I also have one bad eye, and that’s pulling my binocular vision down. I’m getting conflicting advice too: Use both eyes, use one? Sue from the RNIB (without having read any of medical case notes or even getting to know my name; that’s just struck me as odd, that she didn’t even take any details from me, not even my name) recommends I go forward with my life with monocular vision.
Use your good eye and close your bad eye. I'd presumably go on with life then by wearing an eye patch like some sort of pirate, or squinting out of one eye like a Peeping Tom at a keyhole. And where (if being monocular is the way forward) am I going to get an eye patch? I have been given no information so far.
It was not stated, but in her repeated questioning of me: “What do you expect to get out of talking to us?” she seemed from the way she led the conversation that I had no right asking the RNIB about registration as having a visual impairment. All the way through I have had sod all in the way of helpful advice from anyone. The only helpful advice I feel I got from Sue was that I should close my bad eye and (reading between the lines) walk around like Popeye the cartoon character. She did however give me a number for a similar organisation which I will attempt to contact today, but she advised that I was not likely to get help from Action to Work (who apparently could fund any necessary adaptations to my work-place) as my problem wouldn’t be likely to last twelve months (how she drew this conclusion, I don’t know), and I’d learn to live with it. That’s the advice from the RNIB then; it felt like she was saying: here’s another number, don’t bother us, close your bad eye and learn to live with it. At the end of the call, she clearly didn’t even know the half of my problem, she didn’t know the problems I didn’t really have chance to explain that there had been sod all in the recovery from retinal detachment.
I honestly feel like giving up now. I am filled with self-doubt, and self-loathing. What am I supposed to do? Nobody professional seems to want to advise on how I try and live my life, get back to work, what I need to adapt to going to work, living with unimproved sight, etc., apart from a few minutes at the local Blind association, as I mentioned previously. They're understandably limited in how they can advise me, and I'm truly grateful for their advice thus far. But I don't know what to do any more. I'm trying to move forward, but the RNIB has essentially told me I’m not entitled to any help, so my self-esteem is even lower, and I honestly would not recommend the RNIB’s advice number to anyone. Their website states it’s for all people with sight problems, but my dodgy eye apparently doesn’t count.
Perhaps it didn’t help in that I did not give a structured formal case report on my vision, but in my fragile state, along with anyone essentially in mourning at the loss of vision, I’m not exactly structured at the moment. Having had no useful information from anyone so far, I’m not exactly sure what advice I should be asking for or am entitled to at the moment. But if the experience with Sue is anything to go by, they’re not trained at the RNIB to extract information from people.
Maybe they indeed don’t help people with one working eye, maybe Sue was desperate to go home early (it was nearly 5pm I called, and the lines are supposed to be open until 6pm), but it doesn’t say anything like that on their website. I found nowhere on their site a notice saying "If you're a Cyclops, fuck off".
Hang on, a thought just struck me: if they aren't interested in people with one working eye and one dodgy eye like me, why did they react as if they did recently after Jeremy Clarkson’s comments about Prime Minister Gordon Brown being a one-eyed Scottish idiot (Gordon Brown by the way has the same eye problem as I have, namely a detached retina in one eye)?
The RNIB rushed to defend Brown then. That's a bit hypocritical, isn't it? So what has Brown got that I haven’t? We’re both in essence one-eyed (I have a bit of distorted and blurred vision in the right eye
as stated previously, but nothing useful). We both live in England. We're both from Celtic countries. And we’ll not comment on whether I’m an idiot or not, but Brown most certainly is. ;) See? I've still got a sense of humour. But even that resource is draining fast.
By the way, I won’t make a complaint to the RNIB about Sue. It would only punish other visually impaired people, as they pull phone-jockeys off the phones to investigate Sue’s unhelpfulness (presuming they have a pro-active complaints process), as she might not have an off-day the next time she’s in work and may actually have a sympathetic ear or might help somebody else.
Again, many many many thanks to my beloved fiancée Angie for helping me to type this.
Addendum (14 March 2009): On reflection, I may perhaps have been a little harsh on the RNIB, as the above text was written while I was still emotional. Unfortunately my impression of the RNIB is based on the actions of one employee/volunteer of theirs named Sue. She gave me a very negative impression of the organisation at a time in my life when a kind word or a sympathetic ear or even rephrasing the information she gave me in a more sympathetic way might have helped better, instead of making me feel like a phony. I'm sure all the work the RNIB does is good, but it is unfortunate that the only encounter I have had with them left me with a sour taste in my mouth. I now have the impression that it's not an organisation for just anyone with sight problems, but rather an exclusive organisation: despite their rallying round for the one-eyed Gordon Brown, a cyclops like me isn't allowed in the gates or allowed any advice. Should anyone else have dealings with the RNIB, I heartily wish you the best of luck.