Wednesday, 27 August 2014

People Should Not Judge Me If They Don't Know I Have Lost Someone Close to Me

A few years back , I got told by someone I'd been a friend with for 16 years that I knew nothing of what it was like to lose someone close to me when his dad died extremely suddenly of a heart attack when he had no symptoms of being unwell. What I post next shows how little he knew. OK, I never met her, but the time around Christmas 1981 was a happy one and a very hard one for my parents: happy as  my identical twin sister and  I were born, albeit 3 months early, unable to breathe on our own and with numerous infections. 3 days after that we both suffered cardiac arrests and the hospital staff and my parents were told to say goodbye to us. We bounced back, until 6 days later, when my sister Natalie passed away due to heart and kidney failure. Then, I was diagnosed with hydrocephalus and spastic quad CP. My parents were told I'd  be a vegetable. 2 weeks after I was born I was extubated, but my parents had had to undergo my sister's funeral before they were even told the extent of my disabilities. 
In 2003, when I was 2 weeks into my final year of university, I got a call from my grandmother. She and I have always been extremely close. This call was different. She told me that my grandad was lying on a gurney at the hospital.  I had to ask her to repeat herself. I asked if she had been to see him, She said it was too late- I asked why. She said he'd passed away that morning. It was their wedding anniversary.  She said the last thing he did was tell her to open her anniversary card. I have never cried so hard. In that moment, nothing mattered, not my studies or degree, nothing. The girls I shared a house with, who by now were my friends, and one was my best friend,  heard me  crying and hugged me and said they were sorry for my loss. I felt empty, and like all I wanted was to be near my family. I couldn't concentrate for the rest of that term, and was prepared to give my degree up, abandon the university I loved. But I didn't, not completely. I went to live back at home with my parents and commuted each day. I graduated in 2004 and was so sad my grandad, Terrence Barton Kelly, was not there to see one of the biggest moments  of my life. 
Just recently, I found out that my PCA from Infant (elementary) school passed away due to cancer. I was numb when I read the email from my mum. Without Avis Rance, I would not have learnt to write, or read or be more confident.   
So, I do have an idea what it is like to lose someone. I may not have lost my parents, but these people were close to me, and it still hurts as much. People who know nothing should keep their mouths  shut. Needless to say, my friend and I are no longer in contact after he told me to get on with my life  in a way that said he did not care about me at all after my parents made me homeless when I was 30. At times, I think back to the good times I had with this friend and mutual friends we have, and I feel sad, I want to have those times again and to let him know what is going on in my life, to let him know I won NaNoWriMo last year as well as Camp NaNoWriMo twice  this year and am fighting to publish my first novel. I want to tell people what I have done and for them to be happy for me. I have other  great friends who I thought would be lifelong but decided to turn their backs and disappear from my life. So, yes, I do know what it is like to lose someone in more ways than one. 

Friday, 22 August 2014

Our Plight to Get Housing

  Hi Readers! 

Today, I got some emails from Trovit, an online property website I am registered with  claiming there were ' hundreds of properties' with my search criteria. Such a  joke, Alfredo and I have been looking for a new flat for 6 years now, and there is nothing. Even when I am registered  on lots of  property websites. I hate living where we are now, (the flat, not the area)  we both do, but have no choice as can't find anything. This is driving me crazy. People close  to us  will tell us not to worry, that we will find somewhere, that we  are not the only ones going through similar stuff, that they want the best for us, want us to be happy etc.  I know this, but I am feeling like other people don't matter too much, what matters is Alfredo and I. When I say this, I am not being self centred or mean, I am speaking the truth.  I am also looking for bungalows, and have looked for hotel rooms, even rooms in a youth hostel, but nada, zero. 

I have asked friends and people I trust along the way,  for advice, but at the end of the day, their experience is their  experience, and will be different to ours. The general consensus from websites is 'keep looking.' Some estate agents have taken our details, and will 'get back to us' if anything comes up.  This is logical and positive and all, but when you have days (often weeks) where you look and look and look for housing  and keep telling yourself not to lose hope as hope is the last thing we lose, you feel hope slipping away anyway as things are so much out of your hands. Sound familiar? Well, yes, that is me right now. 

I dream of the day we will have a home to be proud of and have more stability in our lives on that front. We talk of starting a family too, and I have been taking folic acid  for awhile now. Everything seems like it will be fine as I know the precautions I have to take, and the extremely high level of care I will need. My novels are going well too, but the housing difficulty for us is like me trying to drive my powerchair along the road but the entire road suddenly being blocked by a huge boulder, meaning there is no way to pass it.  

I cannot wait until we can go shopping for furniture and other things for our flat or bungalow. I have various Pinterest boards with what I would buy. That will be the easy part, me being the shopaholic that  I am, LOL. 

 I have been assessed, and  various  occupational therapists  know what I require. Once we find a place, it will be time for various teams to get involved, OT, as well as the Visual Impairment Team to get the level of lighting wired into where we will live that is right for me, and provide more aids for my  physical and sensory (visual)  disabilities. 

I know this is probably REALLY far in advance, and probably not (who knows? I really hope the answer is 'probably not'). We have decided that we will have a party when we are in a place, and those who want to and can come, are invited. 

I will start to blog our progress on this more often, so look out for the next entry :) 

Have a great Friday and a great weekend! 

 

Thursday, 21 August 2014

I Will Never Give up

 Hi friends how are you? I am taking it easy today because I am feeling tired from all the work I am doing on my novels and also still have not recovered from my trouble with my ears, it turns out I have an ear infection  in both ears, and I am on antibiotics.  I hope to send off for my proof copy very soon. Then, I will read through the other proof copies that I have. 
Instead of posting a usual status update, I decided to blog for you. Preparing for publishing is a much longer and harder process than I thought it was going to be, but I know I will get there eventually. I will do anything to make my lifelong dream of being a published author come true. Earlier in the week, I had an unpleasant experience with someone from the critique group that I have joined. She really put down my work and was very rude about it. I do not expect to get great comments all the time, but do not expect people to be as rude as she was. She then saw on my profile that I have the disabilities I do, and e-mailed me via my profile page in the group apologising, and said that if she had 'known that I have disabilities and that it was just under a year since I started writing novels, then her comments would have been different ' . If she had have read my profile on the website, then she would have known that I have the disabilities I do, and also if she had properly read the introduction to my submission that explains which disabilities I have, and the fact that I use dictation software to use the computer, and because of this there might be some typing errors in what I write, then she would have known. But no, she just decided to dive in and criticise me harshly to the point that it seemed she was criticising her worst enemy. Don't get me wrong, I know this is a critique group, and that I should be prepared for whatever comments come my way, but this to me was crossing the line on rudeness, especially as other people could also see the comments.
I have been asking myself since this happened what kind of comments she would have given me, and how the fact that I have disabilities should mean that the comments should be automatically more positive, or condescending, or even pitying. I do not know this person, but I myself absolutely can't stand being pitied by somebody, in a matter whether I know them or not and how well I know them or not.
I mentioned this to Alfredo was very supportive, and said that there are different ways of saying the same thing and that she should have been more diplomatic. I myself, if I had thought this about somebody's work, I either would not have commented at all, all been more diplomatic about the way I put in my opinion across. That said, I know that everyone is different and not a lot of people are like me, and I have been repeatedly told over the years that I am too kind. Maybe that's true, but I tend to treat people as I would like to be treated by them, and I'm not the kind of person to put someone down especially like this. I was very shocked by this when it happened, and what happened occasionally goes around in my head still, but I am determined not to give up my writing just because someone thinks what they do. At the end of the day , if this person doesn't want to buy my book, then they shouldn't but I am sure there're plenty of other people will want to, and that plenty of other people will value my work a lot more. As Alfredo said, only the people who are closest to me for example him, my family and some friends or those possibly with hydrocephalus or cerebral palsy will be able to appreciate what I do, and be able to identify with the effort that it would take a person with these conditions to produce a book. I will never stop saying that I am proud of what I do, and I am striving for success in spite of some spiteful comments that I might find along the way. If people don't like what I do, then they don't have to read excerpts of what I do or even buy the book that is completely up to them but I am not going to stop fighting or trying to sell the book just because of a few people who don't know how to appreciate my work.

Sunday, 3 August 2014

An Odd Day of Good And Bad Things

Today has been odd, positive and negative , a mixture of good and bad, but that's life I suppose. Feeling tired and have a headache and some muscle spasms,  and my body is not interested in moving which is "my"  kind of tired, but I am feeling great about how today has gone. I worked on my second novel in the morning and afternoon for a few hours and managed to see a film too, so got to relax. People are always telling me to relax more, I know I work hard when there is something I feel passionate about and sometimes for hours, but that is just me. I am giving my novels my all. They are all still at a draft stage but are coming along. I want to publish the first one as soon as possible, and my ultimate goal is that it is published before my birthday on december 22nd. For now, I am reading. I had some bad news today too, my 90-year-old grandmother Patricia (Pat to the family) fell on a recent trip to an art gallery and sprained her wrist, I wish her a speedy recovery. I am on my 59th book of the year Ghost Girl by Lesley Thomson. There will be a review coming soon on Goodreads  and my My Reading Paradise (wordpress) blog at myreadingparadise.wordpress.com. 
I hope you are enjoying your day wherever you are in the world. 

Book 59  of 100 For My Goodreads Reading Challenge - And I Don't Plan On Giving Up Anytime Soon! 
 

My Grandmother Patricia Kelly , please get well soon!