Male

At first, I just couldn’t keep my eyes open. I had incredible tiredness and lost control of my eyes, maybe 20% of the time and mainly when I was tired. I didn’t think much of it until my wife screamed at me one day that I wasn’t interested in what she was saying. It was only then that we thought something deeper might be wrong.

I visited my local GP in Melbourne, lovely lady, but she was convinced my tiredness was to do with diagnosed depression and sleeping disorders (I use a CPAP). Probably a natural thought process but while I trusted her for everything else, it become evident she had no idea what I was going through or where to send me next. She had me booked in for a sleep study and I cancelled and left that clinic. Lesson 1: Local GPS generally know nothing about dystonia.

I was lucky enough to be referred to a Professor of Neurology at Epworth who logically considered brain tumours, and myasthenia gravis (MG) which is a chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles. Both are measurable but he was convinced I had MG so he put me on medication that made me sick while we tested. After both tests cleared me, I was off the medication quick smart.

This professor sent me to two other professors for a BEB test both of which diagnosed me with BEB, a non-provable collection of symptoms that seems to be what you call it when you’re not sure it fits anywhere else. One professor walked into the room and said I had BEB in five seconds and walked out. At least they didn’t charge me. Lesson 2: What we have is not formally diagnosable and you need to learn to live with that. I struggle with this as an engineer.

Once diagnosed I started the dreaded Botox, it didn’t worry me at all that they were going to inject around my eye as they could have done anything to me and I would have tried it. It didn’t hurt much surprisingly but I found no improvement through Botox that others do.
While testing my eyes and getting scans they found a cyst inside my skull, the size of a golf ball. Of course that had to come out, while getting more scans for that they found an impacted wisdom tooth, that had to come out, and then through blood test, they found I was pre diabetic. These are all now resolved but distracted from the original diagnosis in parallel with all of this. I hoped there was somehow a connection but no.

After repeated Botox failures I was referred to a surgeon to remove the muscles around my eyes, and a follow up operation to stop the eye lids flipping painfully inside out. This surgeon was excellent and was clear the surgery would improve things not resolve them. And it did, I went from being blind 90% of the time outdoors I am now less than 40% blind. Lesson 3: Success comes from experienced doctors who regularly treat your diagnosed disease.

After much pain and expense I settled into accepting this is as good as it gets. I briefly tried to leave my Botox Neurologist to get someone closer to do home, but they simply said you don’t have BEB. Three professors said I did, and this idiot thought I needed talk therapy. Lesson 4: There are dickheads out there.

As an analytical type, I thought he was an idiot but I did see a Psychologist for a while who basically said ‘what don’t you want to see’, I was after tactics to manage my disability, and she was convinced I subconsciously did this to myself. I did try many times with this person but eventually gave up. Lesson 5: This is real, no one knows why, but it is.

Returning to Botox post-surgery, it was now painful as they were injecting into scar tissue. I am now considering stopping this treatment after 8 tries.

Now I live in a seaside resort, retired mostly, can’t drive, can’t walk if the sun is low in the sky, or windy, and have lost my independence. The local community is mostly great, some people think I am drunk wandering along the street.

Humour has helped me; I have T-shirts that say ‘Blind or Drunk’ and ‘if you can see me I can’t see you’. They call me Blinky and I like to laugh at this. All the diseases I was tested for, were much worse, so this one is not that bad. I have many more dad jokes now, ‘let me drive’ etc.. I can’t drink drive which is a positive and my wife is always the designated driver. It has affected my wife sometimes I think more than me.

I now play golf with a few people who watch where my ball goes although I remain paranoid that I will walk into a bunker. I can’t run anymore after running first into a pedestrian and then a tree. I have found some glasses that help with the wind called ‘7eye’. I still use power tools but only when my eyes are good, and when I get tired, I rest my eyes. TV and going to the movies are a far less a positive experience.

I suspect a connection between depression medication and being overweight etc..  I now have a local GP who is younger and knows about BEB and what she doesn’t know she reads up on. I trust her and bounce things off her all the time. Each day I accept the things I can do and try to ignore the things I can no longer do. At least I say I do. Lesson 5: Don’t join the international BEB support groups on Facebook, they are depressing.

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