PHONE CALL FROM SHOCK BY FIONA CUMMINGS

Well Bloggets, at last I received the phone call I have been waiting for.

My story begins whereby I received a disturbing letter from someone. More on that in a moment.

 

I went to my main eye hospital almost four years ago. I wanted to know if I could be put on some kind of program for research for my eye disease, Retinitis Pigmentosa.  Well, blood was taken and I hadn’t heard anything for a while so my GP arranged for me to have a second visit. That first hospital visit, was the first time I had been to the eye hospital about my eyes since I went blind 16 years earlier.

 

My second visit was last year. He was a nice man, I was slightly tense about the stupid process one has to go through when we have our eyes looked at.

Basically, a nurse takes you into a room and waves her hand at you. She asks what I can see. I say nothing at all. Then she asks

“How many fingers do I have up?”” I say I am blind. I can’t see. Then she went to the light in her room. Turning it off and on. She asked was the light on or off? I said off. Wow, she said, great you can see? No, I replied, she then asked was it on or off? I answered with a smile in disbelief what was happening. On. Wow, brilliant I must write this down, you can see light. No, I replied. I can’t see it. Well she asked, how do you know if it’s on or off?

Now this is something only some of my Bloggets will know who can’t see, but we learn the sound. A light turning on and off, to me sounds different when it’s getting turned on or off. The sound of my switches makes a higher pitch when I turn it on to what it does if I turn it off.  Now, only some of my lights sound like this and it could be the angle of the switch to your finger, the way we push it? I’m not sure, but her switch had a totally different pitch and I know it would be on when I went in, so her first action would be to turn it off, right? Haha.

 

Then the best bit comes. She shuffled with papers, bringing them to me. Holding them near me. Asking me to read the words.

Oh, my, God. Take me out of here?

Was, my first reaction.

She then held it closer again asking if that helped.

Well, I then went to see the specialist where he looked behind my eye with one of those machines you put your chin on.

Another blood test and on my way. Such a long journey too. Two and a half hours there and back for a ten-minute appointment.

 

Fast forward a year and a half. I called my GP’s office to ask for a call back from my lovely GP.

I had to wait two weeks before that could happen but she called me and she had in fact received a letter from the hospital.

I couldn’t believe what I was hearing. I was sure she had read wrongly, but she did admit to going onto Google so I kind of hoped she had made a mistake and it could be fixed by me receiving that same letter. So, another phone call to the clinic and two days later I went to pick up the letter to only have read to me news I didn’t want to hear.

I tried to use my App on my phone but it only read every few words mixing in loads of coadds and numbers. So, between my Son and Shamrock, they read the letter to me. Whilst Shamrock did her investigation work on her iPhone, and my boy could see I was very upset though I was really trying to act and do well at being the strong Mum I should be. Fighting back tears and the lump in my throat getting bigger as I just wanted to run away! He came and sat next to me, holding my hand. Kind of making it worse, but I managed not to cry thank goodness.

 

Well that night was a long one and the next few days turned into weeks until today. Just half an hour ago in fact. And, now I have my answer, most of it anyway.

 

  The letter said I had Leber congenital amaurosis

No way, for all but four years of my life, that was the first four years, I was told I had Retinitis Pigmentosa.  An eye disease to be honest I have learned to hate, despise and respect, all at once, but a label I have had since I was four years old. In my little four-year-old head, I could see perfectly well. My eyes were lovely as people used to say especially the media. Many times, I used to be in the press only a picture of my eyes which sounds rather odd but in their simple minds, they wanted to show that to be giving news like my Mum was given, still can mean you can have a child with so called normal looking eyes. My eyes were focussed still and looked like any other child’s eyes. What I saw was so clear. But as I got older, I realised that when I moved my head I couldn’t see properly. In the dark I was almost blind but, I still saw lights from houses and cars and shadows of people and trees for example. I could see tiny print right up until the night that was to be the night before the worst day of my life. the day RP finally caught up on me and delivered me with the word blindness. In both eyes at the same time. Overnight. I had 26 years to adjust, but for me personally, blindness wasn’t going to happen. It couldn’t. most of my life was spent travelling all over the world trying to find treatment for RP, every single specialist saying the same thing to my Mum. There is no cure or treatment, your daughter will go blind eventually. The first Doctor, a dreadful nasty man from my home town of Newcastle, told my Mum that I would be blind by the age of 13 and to give me the best Christmas ever as it could be my last one sighted. This was when I was four, I was in the room and what upset me mostly was the fact this horrible cruel man made my Mum cry. There was no help for her in those days. She adopted me when I was four weeks and her and my darling Dad promised each other to give me a better life than what could have been if I had stayed with the person who gave birth to me. She just didn’t understand blindness she was afraid. She didn’t have anyone to talk with. She knew no one who was blind either. So, the travel began and ended up in Moscow, where I lived a life that I wouldn’t wish on anyone. I have written in my blogs before about that experience the first visit to the former USSR. Many years later, in fact I was 22 the last time I went to Moscow, my world was RP. It was my identity.

 

My Mum was asked to set up an RP group as there were none in those days. She said she would help if someone else could run it as she spent all her days reading news papers as that was all that was available back then for research and wrote so many letters and read even more from so many other people who were desperate to find treatment for RP.

 

I was the first foreign person to receive the treatment in Moscow for RP and after me there were 10,000 other foreign people who received the dreadfully painful injections. I also got electric shock treatment and other things that no one else was offered as my face and name was never out of the media, so I think Russia were anxious if anything went wrong.

 

Goodness knows what was in that serum I know high doses of Vitamin A, were in the eye injections but the other needles? Your guess is as good as mine.

 

Our Prime Minister, Mr Wilson at the time signed an agreement with my name on between both countries that the eye treatment I received would be free, but getting there and back was up to my mum. Kind people used to send £5 to my Mum and some places used to try to raise money, but nothing came close to what my parents had to pay. And, because I had to go for treatment every single six months, people got bored and the small help that was kindly received dried up. Now this is where my Mum wasn’t a taker but a giver all her life, the media tried to tell her to sell her stories, but she refused, and it was a joke as many times we were in the press and we were quoted, and we hadn’t even spoke to anyone. Now days it would be all different.

 

So, all the years of me researching RP, writing about it, giving talks and so on, thousands of interviews in the press/magazines, TV reports and weeks of drama like shows going out as well as radio interviews, all added onto the RP badge I have learned to wear. For me to be in so many groups with regards RP, my friends who have RP, would I be a fake now? How would those people feel about me now? Somewhere else I wouldn’t belong?

And to learn that there is hope on the horizon for what could be a debilitating condition, then find out that actually I haven’t even got RP?

 

Well, my RP family, let me tell you, I have never been so upset to be told I haven’t got something like this past few months. And that is how long it has taken to sort this all out. Thanks to my lovely GP I received a phone call from no other than the specialist who put his name to the new diagnosis of, Leber congenital amaurosis

 

Weeks ago, I was told by letter I had this. I of course was upset to learn of my new identity. But as I further investigated this, I learned I had no symptoms at all of LCA.

 

abnormalities include roving eye movements, deep-set eyes, and sensitivity to bright light occur with this disease

I just didn’t understand why I would be sent such a letter? My GP suggested because of my blood test, they may have discovered more information, this doesn’t change the fact I don’t have any of the above symptoms. And what I learned today, they haven’t even received my blood test results back. He was telling me that one man had been waiting two years and his results were not back yet… So, as soon as the hospital receives the results, he said, he will phone me. Then I will learn the type of gene I have. But, to take no notice of the letter, I don’t have LCA, but I have in fact, got RP. Oh, my, seriously, I know that most of you who are reading this right now will not understand what all the fuss is about, but I have been so very upset and worried as firstly I received years of treatment for RP, and I must have spent months if not years writing to people with RP, researching the latest news and working hard to try to make it an eye disease that people newly diagnosed will not fear as I did many years ago. I think I was in shock. But now I’m relieved. I have never heard anyone be happy to be told they have RP before. But today I am.

 

Because LCA is also a genetic disease, I also hope the research that is going on now will benefit those of you, who have it too.

The specialist was really nice and I think was embarrassed by the mistake that had been made. Thank God for my lovely GP who understood how I was feeling through phone calls. But let me tell you, in between my first call with my GP, and my last call with her, I spoke to a horrid man who said he was a GP and I can only be grateful that he wasn’t or isn’t my normal one I see. The lady I have as my GP is kind caring and understanding where as this man, he was rude vulgar and a disgrace to his profession. He reminded me of Doctors in the olden days, thankfully now hospitals seem to have people working for them who are human, but this GP was born with a silver spoon shoved right up his derriere and one day I hope that spoon is forcefully removed, filled with glass, and rammed back up there where it needs to stay. Harsh? Yes, as is being the way, he was to me.

 

Within seconds he told me in little words I was wasting his time and to be honest, it didn’t matter what my eye disease was called, there was nothing that could be done about it. He told me to take a chill pill or stop to have some food for thought. He said that he didn’t have time to talk with me as he had another patient to talk with so, God help that other patient.

 

My Sons 21^st tomorrow and what I have learned will make it into a very interesting day, but more on that in my next blog, the day will be intriguing. I’m really excited about it especially as part of it is out of my hands. It’s a new outlook in my life, and a surprise for sure. Laters and take care if you are experiencing this dreadful weather we are having in the UK. It’s dangerous. And, if you are worrying about a diagnosis right now whether it be your eyes or anything else, don’t give up, call be a nuisance if you have to be, it’s your right to be put at wrest.