Diagnosis Day

July 31st and my parents had already travelled to Eastbourne to celebrate their anniversary and I was off to the less picturesque Camberwell and King’s College Hospital. I had been there before but had driven, which of course I can no longer do. In fact I had stopped myself in early May as i no longer felt safe. I had visited the TFL journey planning app to find the best route, which involved a bus, two tubes and another bus. A few months ago this would not have been a problem but during this period I had been finding travel more difficult.

The first bus posed the first problem. Four different buses visit my local stop and two of them go to the tube station but I find it hard to pick out the numbers until they are very close. I have to stop every bus and hope its the right one or apologise. I got the right bus, well I did have a 50/50 chance. Fortunately I get off at the terminus so no problems there. Saying that, these days London buses actually talk to you, announcing the number, destination and next stop, which makes life so much easier.

The first tube was fine, I had been there many times and I was only going 2 stops but the change over was something new, a station I had passed through but never got off at. Where did I need to go now? All the signs dangled from the ceiling. Not a problem a few months ago but with the sight loss I would need to be taller than an NBA basketball player to read it clearly. At 5’8″ I could make out bits so asked someone from the station for directions. I listened for announcements to get on the right tube, as I couldn’t read the digiboards. This tube was similar to the bus as it spoke to you so no problems getting off at the right place.

The last time I visited King’s College I thought the hospital was literally just round the corner from the station, walking distance but the journey planner said I needed a bus, which confused me. I got out of the station and looked around. With what vision I had I did recognise some things around me so decided to ignore the planner and walk. I was right and found the entrance to the hospital just around the corner.

I entered the hospital and felt overwhelmed. There was a lot of movement and I couldn’t see a reception desk but there was a map. I went over to look at it but with my face inches from the wall I could’t decipher what was going on. It was large enough but may as well have been written in hieroglyphics and I couldn’t see the eye department. How ironic! A kind cleaner, well that’s what she looked like, tried to help but she didn’t know where the eye department was. She stopped a passing porter and said I was looking for the eye department. He said it was in another building and to follow him. He took me to an exit and said, ‘Can you see that brown transit van over there?’ Naturally I looked over. I could see something that looked like the shape of a transit but that’s about it so I looked at him blankly and replied, ‘Not really’.
‘Ah that’s why you want the eye department.’ He won’t be a porter for long! He then said it was the building next to the van. I thanked him and hoped the van didn’t move.

I found where I had to go, checked in and took a seat. The waiting area reminded me of an old school hall. The parquet floor, large windows and classrooms that came off the perimeter of the hall, that were now being used as consulting rooms. The only thing that was missing was the PE apparatus clinging to the walls waiting to be used. I got called in and an assistant did more tests. My vision must have got worse as all the letters on the chart were difficult until she brought it closer. Before I could at least do the top row and sometimes the second. Field of vision was done again and I went back to the school hall.

The next time I was called was to see the specialist. We went over my old notes and all the test results. I wish I learned the numbers in the colour blindness test as they were much more difficult than before as well. We discussed the history of LHON in my family and I was sent to have my photo taken. Just as well it was only my eyes, as I hadn’t dressed for a photo shoot.

The next time I saw the specialist I knew he would be delivering the news that could change the rest of my life. How did I feel? Apprehensive and anxious, as after four months I’m finally going to find out what is wrong with me, still hoping that my vision loss would be temporary. I didn’t want to consider the alternative but knew it was a definite possibility and the most likely one.

He confirmed that I had LHON and my heart sank but not for long, as deep down I knew it was coming. Knowing a bit about the condition due to my family history made me better prepared than if I was going in blind, as it were. The specialist also made it quite positive, which I didn’t think possible. He said that my vision shouldn’t get any worse, which was good news within itself as I was fearing the worst. He also said there was a possibility that some vision could return, even better news. There are some clinical trials in Newcastle that include a drug that has shown signs of improving some people’s vision. He’d told me that I’d be visually impaired and not be able to drive but still gave me hope to the extent that I may get behind the wheel again. Seeing is believing for that one though. I would be registered visually impaired, need to be assessed by social services and attend a low vision clinic but first a genetic blood test to confirm which mutation of the gene I have. Questions were answered and I was sent to the other building to have my blood taken.

I did feel that a weight had been lifted as I now knew what was causing my vision loss and was no longer in limbo. I had a new life ahead of me with new challenges that I intend to face head on I thought I might feel upset, as I had in previous hospital visits when I realised I could be facing permanent vision loss but not this time. For some reason I was OK and felt ready to face the challenges ahead. The first of which was getting my blood taken.

Forms in hand, I found where I was to have my blood taken. It was smaller than I thought, with few people around and I couldn’t work out what system they were using. I looked for a reception desk but heard a voice say, ‘You have to take a ticket.’ I looked in the direction of the voice and a porter pointed in the direction of the ticket machine. I took one and expected to wait for a while but my turn came quite quickly. I think the phlebotomist may have been new as he wasn’t sure what to do with some of my forms. If I wasn’t nervous before then I was now. Saying that it was probably the easiest blood taking session I’ve had. Seven little bottles were taken with less problems then I normally have taking one. I was free to go after nearly four hours in the hospital.

There was a nice cafe near the station so I headed there for lunch. I explained to the man at the counter that I couldn’t see very well and asked what sandwiches they had. I stopped him when I heard one I liked and my phone rang. It was my dad from Eastbourne, he’d not heard anything so gave me a call. I’ve said he’s not the most patient person haven’t I? ‘I’ve literally just come out and got to the station.’ I explained and proceeded to offload all the information I had just taken in. I don’t know if it all came out, whether it came out in the right places or if it was comprehensible but dad seemed to take it in . He had words of empathy and advice and to keep my spirits up until they returned. I didn’t want it to affect their time away but I knew it probably would. My dad can put a brave face on it but I knew my mum would feel it more. I knew she would feel guilty as the gene runs along the maternal side. She has not knowingly passed this on to me. I don’t blame her. I don’t feel any differently towards her, she’s my mum. There’s absolutely nothing she, me or anyone could have done to change it. It’s been lying there dormant for years and has only decided to trigger the vision loss now. Don’t know why but life goes on.

Next to be informed has to be my sister, not just because she’s my sister but also because the gene runs through the maternal line. I called her while on an overground section of the tube. This was a very different call to my dad’s. I told her what the specialist told me and answered questions as best I could. We talked about possible implications and I could hear her getting upset. I highlighted the positives, like the maternal family members that haven’t developed vision loss and how slim the chances of developing the sight loss are according to the statistics. She was obviously and understandably worried for the future but I wouldn’t let her get off the phone until I could hear she was OK.

My sister getting upset triggered my waterworks, on the train as well. As much as I tried I couldn’t hold it back. Don’t get me wrong, not all out balling but there was a constant stream down my face. I don’t think many people noticed so whatever street cred I had, remained in tact. I gathered myself together and decided to see my manager at work to give them the news as it was on my way home.

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3 thoughts on “Diagnosis Day

  1. Alan Reed says:

    I am so proud of my son Steven, the way in which he has accepted the condition and looking to the future in a positive manner. I read both blogs after he had written them and I have to say street cred or not I sat there crying my eyes out both times. I would think that he would definitely have a good career as a writer if he put his mind to it. Keep it up Steven, which ever direction you choose in life you know you have your whole family behind you. Dad

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  2. PEN says:

    I thoroughly enjoy reading your blog. But I know from heartbreaking personal experience that life is all about highs and lows. So enjoy the highs and face the lows with the determination and courage that you so obviously possess. Kind regards PJL

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  3. Many thanks for your kind and supportive words. I’m glad you enjoy reading my story and feel a connection with it.

    Before my vision loss I was a positive, upbeat and happy go lucky person. I see no reason to change that. If I didn’t I would only get depressed and I don’t want to go down that route. The blog helps and if it inspires others then I am happy.

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